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Aussie Barb
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Joined: Sun Sep 10th, 2006
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 Posted: Mon Sep 11th, 2006 03:29
Members' testimonies of their improving health

 

"Remission is not returning to 'normal'. I've been transported somewhere, somewhere I never remember being before. Where my mind is again fully my own, and fully under my control. Where I have no unusual aches and pains. Where I wake up, each day, looking forward to all the stuff I will get done.

Never do I remember any existence like this - it is 'surreal', not 'normal'........."

Dr. Trevor Marshall, Ph.D


Member interviews

Guss Wilkinson (sarcoidosis, psoriasis, insomnia)

Ival Meyer (RA, dyslexia)

Sue Andorn (Lyme, babesia)

Robyn Russell (mother of 15 yo w/Lyme, myoclonus)

Greg Blaney, MD (cardiac arrhythmia, psoriasis, RLS, fatigue)

Shirley J...wytnez (Sarcoidosis)

Amy Proal (CFS)

Carole Morgan (Sarcoidosis, FM, CFS)

Belinda Fenter (Sarcoidosis)

Julia Grier (Sarcoidosis, OCD)

Paul Albert (CFS, depression, food sensitivities)

Mirek Wozga (Sarcoidosis)

Leesa Shanahan (Sarcoidosis/Hedfort syndrome, uveitis)

Sherry Cook (Sarcoidosis, cat scatch fever, restless leg syndrome)

P. Bear, R.N. - Chronic Borreliosis ("Lyme"), MCS (multiple chemical sensitivities, Chronic Spinal Inflammation, Peripheral Neuropathy

Freddie Ash (Sarcoidosis, CAD, atrial fibrillation)

Melinda Stiles- Lyme, irritable bowel syndrome (colitis), radiculitis (inflammation of spinal nerve roots)

JST (Sarcoidosis w/ CNS dysfunction)

Doreen V. - autism, ADHD depression, severe anxiety, CFS

Ken L- PTLDS (post treatment Lyme disease syndrome)

Peter de Jager (CFS, MCS)

Chris Eastlund (Sarcoidosis, diabetes, IBS)

Bonnie B- Lupus, Sjogren's syndrome

Gene Johnson (Sarcoidosis, bladder cancer)


See also:

Alumni Forum

LINKS to Member progress and improving Health

SarcInfo Success Stories

What degree of healing is possible using the Marshall Protocol?



Last edited on Tue Oct 25th, 2011 01:57 by

Aussie Barb
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 Posted: Mon Sep 11th, 2006 03:30
melinda: LYME:  Very Very pleased with my progress. The MP has given me my life back.

 
December 2004

Dec 15 , 04
DAY 105 of MP
DAY 84 of full protocol :D

Wow where did all that time go???? Guess I've been strung up in the Christmas lights. Ive cont to do my Mino qod 32mg. and benicar 40 q6hrs. Ive had some mild herxing.The worst being IBS after the Chrismas party Sat. Where I ate beef and sweets. Find that is a big NO NO but it just was wonderful, and it is the Holidays, so who can belly ache....about a belly ache.?

Yesterday I increased to 50mg. No Herx yet. Ive taken forever to get here it seems ...but who cares. Overall my body feels almost 70% normal. Do notice just slight increase in stiffness today with the Mino. Will see if I get IBS at 36hrs or not. I,m going to Curves Gym and able to walk. My ankles and knees are feeling less fragile. Energy level coming up all the time.

Very Very pleased with my progress. The MP has given me my life back.

Just want to note that I am 56yrs old and have always been in good health other than hx of infections like Hepatitis and parathphoid when younger.Ive not eaten junk food and tried to exercise three times a week. No hx of diabetes, cholesterol etc and the women in my family live to ripe old ages. Other than always fighting a wt problem which seems to be genetic or possibly low thyroid( don't know if thats always been there or came with Lyme) I have been healthy till the Lyme's got me.

Sometime when we read each others stories we don't have a baseline of health to compare. I think my recovery is helped by my history of fairly good health.Plus the fact that I did do some long term bouts of antibiotics that kept my germ load down. I am really staying out of the sun and avoiding D's.

But to anyone who doubts the MP works....trust me.. it WORKS IF YOU WORK IT...but the word is just take it slow and easy.

Happy Me:D melinda wrote:
I really feel I am starting this year with a good grip on life. Looking forward to increased energy and activity in 2006. Feel that my body has finally reached a state of well being and I can accept that  I will cont the MP road even if it's a bit longer than I thought. The bumps are getting further apart and the pits not half as deep.

On On. melinda

also Melinda Progress Report/Lyme
_____________________
melinda: Lyme since 1999 ? before.3rd relapse July 2004.
parathyphoid fever 1986 hepatitis B 1973 D25 32 D125 58. Aug 20th
Started MP Aug 25th Benicar 40 q6hrs Full protocol Mino q48 hrs Sept 20th  2nd Phase Feb12,04

Aussie Barb
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 Posted: Mon Sep 11th, 2006 03:33
carol: RA:
 
December 2004
Hi Lea:

I just started Phase 2 of the MP.  I used to take low dose armour thyroid, but am now totally off supplementation.  My recent lab results for thyroid function look fine.

Carol   << from here

and:
I have completed cycle 1 of phase 2.  Ever since I started the MP, I have struggled to wake up for the 6am dose of B+Q.  I have shuffled into the kitchen with considerable early morning RA stiffness and pain.  I have taken a Vicodin in addition to the B+Q and gone back to bed for a few hours. 

For the last few days I have noticed a significant change in my early morning routine.  It's easier to rouse from sleep at 6am, I have much less pain/stiffness at that hour.  I don't take any pain medication until later in the day.  I go back to bed, but not for as long. 

I am noticing bony prominences on my wrists and ankles that I didn't know were there. 
 
Yes, indeed, the bony prominences are absolutely due to less swelling. 
 
After years of RA (diagnosed in '96), you forget what those wrists and ankles are supposed to look like.  I have damage that I know is irreversible, but I have high hopes for considerable improvement once the active inflammation abates.
 
Best Wishes to all,

Carol  << from here
___________________
Carol RA Started MP 8/11/04|Initial D tests (7/11/04): 25-D 32; 1,25-D 65| after two months (9/10/04): 25-D 35; 1,25-D 31 Topical E1E2E3/P; Vicodin daily
Phase 2 started 12/6/04

Aussie Barb
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 Posted: Mon Sep 11th, 2006 03:55
Marypat: Sarcoidosis:  Multiple Symptom Resolution. those of us who have followed Dr. Marshall's excellent and scientifically well thought out protocol are living lives that we never thought we would again after years of poor to pitiful health.

December 2004
I've been on Phase 3 since September. 
 
I saw my rheumatologist today.  She is pleased [amazed] that I am feeling so well [most of the time]. 
 
She is especially interested in the change in my thyroid function.  It has remained normal since I quit taking synthroid in March [it has been tested twice since then].
 
Marypat

Marypat: Sarcoidosis - biopsy 1977 refused prednisone.
ChronicITP;TypeIIDiabetes;Hashimoto's(no med now)
Began no sun exp. or Vit.D in diet & NoIr glasses May03.Oct.03 - 30mg Benicar tid plus minocycline qod. MP1 December03;MP2 June04;MP3 Sept.04-now

add May 6th 2005: wrote:

I thought I would take time to compare my health pre MP and now after being on the MP since March of 04.

I followed all recommendations re: sunlight/light exposure,
NoIR glasses inside and out and Vitamin D ingestion from late May 03 through Oct. 03(of course till present also) while I searched for a Dr. that would have compassion and prescribe the MP.  Then 20mg Benicar twice a day and mino ramping up to 100mg every other day from October 03 through March 04 when I was able to get a prescription for 40mg Benicar three times/day and was finally on the Marshall Protocol.

Currently on Phase 3 of the MP.

Pre MP Symptoms:  NOTING  Resolution: NOTING Improvement

Allergies/chemical/smells sensitivities: [many and varied]: 30 % improvement by 8/03 : Total resolution at present

Eyes:

-Extreme photosensitivity: 90% improvement 
-Extreme dry eye (eye Doc said he had never seen such dry eyes) : 90% improvement
-Watery eyes (frequently):  rarely now
-Extreme pain in left eye: rare - herx

Ears: 
-Extreme pain in left ear: 90% resolved
-Extreme vertigo: Total resolution
-Dizziness all the time: Total resolution
-Auditory distortion/noise sensitivity: rarely - herx
-Intermittent poor hearing: rarely - herx

Head:

-Migraines : none in 1&1/2 years
-headaches: rarely - herx  
-Major pain in left side of head: 80% improvement 
-Major Sinus problems: only mild rarely - herx

Cognitive Symptoms:
-Extreme confusion/brain fog for months: now mild with herx
-Extreme irritability for 20+ years: rarely - herx
-Weepiness almost all the time since 1988: now rarely - herx
-Strange ‘stutter like’ speech problem: rarely - herx

Mouth: 
-Severe pain in jaw after dentist work: rare - herx
-‘Tumors’ in roof of mouth: resolved
-All but 2 molars cracked/disintegrated : now crowns                                 

Face
-Parenthesia: rarely - herx
-Left side pain/weakness: total resolution

Neck
-Cervical disintegration/pain all the time: now rarely

Back
-Pain in lower back constantly since 1988: rarely - herx                          
-Muscle pain down center of back after standing for a short period of time: rarely - herx

Chest
-Impressive Bihilar adenopathy 1977 – Biopsy- sarcoidosis (resolved without prednisone within a year of finding)
-Dry hacking cough since 1988: occasionally as herx
-Shortness of breath (frequent): now occasionally as herx

Breasts:
-Calcium deposits in breasts in 1987 asymmetrical section removed after biopsy but deposits were back the following year in the same place; now in both breasts
-Pain that went from mild to very painful from the biopsy site up under my left arm that was there all the time: Now pain only occasionally as herx

Hands, wrists, elbows, knees, ankles:
-Extreme-mild pain since 1984: now occasionally as herx
-Left foot drop: resolved
-‘Rubbery’ legs: resolved
-Great toe pain and pain under fingernails:rarely - herx

Muscles/tissues (see following): are 50% or more resolved
-I had extreme pain from touch...
It was so bad that a small fold in my nightgown would create pain so great that it would wake me up from a sound sleep. 
My husband couldn’t even put his arm around me at night for more than a few seconds it hurt so much. ) 
-My left ankle was so sensitive it hurt to be touched by the sheets.
-Extreme Muscle fatigue/exhaustion: occasionally as herx 

Digestive System:
-Reflux, daily (25 years) : 30% better
-Throwing up ~3x’s/week : resolved
-Slow GI passage  2-3x’s/month: resolved
-Diarrhea, mild constantly : resolved                                                
-Gall stones: gall bladder taken out 1999

Sleep
-Wide awake 3-4 hours/night : total resolution
-Night sweats, frequently: rarely- herx

Heart
-Irregular/fast heartbeat/chest pain 2-3 x’s/month: now as herx

Hashimoto’s Thyroiditis: RESOLVED  [I've had three blood tests in the last year and it is still getting better]

Type II Diabetes (dx’ed 10/04) : still

In retrospect, both my husband and I realize the above complaints were especially bad after vacations [sun exposure] and in the fall/early winter [after summers of increased sunlight exposure]. 

Since 1985 I had self selected to stay out of the sun as much as possible because sun exposure always made me feel so much sicker.  Friends would plan ‘get-togethers’ so that I wouldn’t have sun exposure. 

Driving in the sun even with prescription sunglasses outfitted with the highest degree of protection would result in migraines and all the awful affects of migraines.   In 1988 after a summer of extreme sun exposure due to taking my daughter to swim lessons, tennis lessons and other outside things I had a horrible sarc experience.  It was over a year and a half before I could take care of the home/family again. 


Then in January of 2003 my family went on a cruise in the Caribbean.  Within a week of coming home all the above symptoms plus others were so bad that I began searching for a reason. 

By April the debilitating effects of this newest sarc exacerbation were so bad that I found it hard to remember my children’s names and was unable to remember things long enough to complete the credits necessary to maintain my RD status [had maintained it since 1977].

Thank God for the internet, Dr. Marshall’s hard work and a compassionate Dr. who ‘went out on a limb’ to help!   

I am no longer ‘limping through life.’  This last year for the first time in 6 years I went Christmas shopping. 


Beginning last October [for the first time in about 8 years] I have been able to do grocery shopping again.  Before, if I went shopping I would find it hard to make it through the store and the family had to carry everything in and up the stairs while I ‘dragged’ myself up the stairs and then rested from the effort.  I can now walk upstairs carrying grocery bags in both hands.  No longer do I have to plan a grocery trip to coincide with people being home.  

Still herxing and improving, thank God!

Marypat


From SarcInfo: Aug 11th, 2005

.......those of us who have followed Dr. Marshall's excellent and scientifically
well thought out protocol are living lives that we never thought we would
again after years of poor to pitiful health.

Please read the Success Stories on this site and on the Marshall Protocol.
com to see what an invaluable resource this site is! My health/life is
better now than for the last 20 years.
I thank God for getting me to this site before I was wheelchair bound. My 13 year old son doesn't remember me
being able to do the things I can now do this year. Our whole family thanks
God for Dr. Marshall and the selfless volunteers that serve on these sites.

Marypat
____________________
Marypat: Sarc-biopsy1977no pred.ITP;TypeIIDiabetes
Hashimoto's(no med now)5/03no sun exp./Vit.D-diet&NoIr 6/03: 25-D 17, 1,25-D 44; 12/03: 25-D 10, 1,25-D 23; 12/04: 25-D 12, 1,25-D 32.10/03-30mgBen.tid mino.qod.Ph.1-3/04-6/04 Ph.2-6/04-9/04Ph.3-9/04

Aussie Barb
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 Posted: Mon Sep 11th, 2006 03:57


Meg Mangin R.N.    

Sarcoidosis with unilateral tibial neuropathy (nerve dysfunction) muscle atrophy, fatigue, joint pain, depression, acne, scalp lesions and many other minor symptoms

My illness presented with unilateral tibial nerve damage including altered sensation, severe calf muscle cramps and severe atrophy of my left foot extending up to my midcalf.  I walked 2 miles every day in an effort to improve the strength in those muscles to no avail. The atrophy was gradually getting worse due to continued inflammation along the tibial nerve.

Numerous doctors at the Mayo Clinic in Rochester, MN found no cause for the tibial neuropathy noted on MRI, EMG and nerve conduction tests. But my neurologist suspected sarcoidosis. If I hadn't had some tiny nodules on chest CT scan, he would never have made the connection. Even so, all my systemic symptoms were completely discounted as being irrelevant.

I began MP in December 2002. The Marshall Protocol provided the therapeutic probe that evidenced bacteria-induced inflammation of the nerve with an increase in symptoms due to the immune system reactions. The waxing and waning of symptoms reassured me that something was happening even before I could notice any improvement. This was a slow and painful process as the nerves and muscles reawakened.

As the inflammation has very slowly subsided, the muscle mass has increased and the toes that were immobile now have almost normal movement. My left foot and leg are still slowly improving in strength and my left toes are no longer clawed. They are still weak but pre-MP I couldn't move them at all because the muscles were so atrophied.

Leg cramps that were severe and nightly occurences are now rare. Leg strength still waxes and wanes: sometimes they feel fine but other times they feel either like 'jello' legs or lead legs. The numbness in my foot no longer feels like I'm walking on a rock. Now, it's more like a pebble or just feels like my sock is bunched up when it isn't.

These improvements can only be the result of decreased inflammation in my tibial nerve.

As nerve function returned I experienced various intensities of muscle cramps in all affected muscles, increased numbness and shooting pain in my foot. But I celebrated each pain and ache as they waxed and waned. And when it became evident that function was returning, I became convinced that I would eventually get 100% function back even if it took several years. My Mayo neurologist acknowledged improvement but would not support the MP.

It's taking a long time for my nerve damage to completely resolve. Nerves are also poorly perfused by blood and I suspect that this inflammation has been there many years. With that in mind, it isn't surprising or discouraging to me that it may take years to completely eliminate the inflammation and resolve all symptoms. Some people are satisfied with less and that is okay too.

I have every expectation for a full recovery but I expect it will take awhile longer. My foot was numb for years, so some of the damage may be permanent. Time will tell. 

Many other symptoms such as depression, fatigue, photosensitivity and joint pain have completely resolved. Some resolved quickly and some took a bit longer. All other symptoms are significantly improved and do not interfere with function.

Far from being discouraged that I still get mild immune system reactions, I consider it a stroke of luck to be able to tell where previously undiagnosed inflammation was hidden.
 
When you consider the fact that I had symptoms for decades, a few years is a blip in time as my medical condition slowly improves instead of slowly deteriorates.


I check my blood pressure occasionally. It has been as low as 70/52 while I was working and I felt fine. The dizziness experienced early in the protocol has resolved completely while B/P remains low.

January 2007: About five years ago a massage therapist pointed out to me that my cervical spine felt very odd. When I asked my PCP, she said it appeared to be a 'curvature'. I had no symptoms at that time and I don't believe I've had this curvature all my life.

A few months ago, I had a period of severe spasms involving my left, anterior neck muscles. Lately, I've had intermittant muscle pain (sometimes severe), involving the muscles of my left upper back, neck and shoulder. Both these symptoms did not occur pre-MP.

I believe these muscle spasms indicate that the curvature in my cervical spine is slowly being resolved. And the bones in the back of my neck do feel less odd to me. :)


February 2007I've not had a clear complexion since pre-teen days. The news is good though. I'm happy to report that after years of waxing and waning with immunopathology, my acne and scalp lesions are now almost totally resolved. Because it took so long, it was sometimes difficult to believe that the MP was the answer, especially when my face looked like a teenagers with wrinkles. :X So hang in there and don't give up during the rough times. These CWD bacteria have been with us a long time but they can be defeated. :D

August 07: A couple years ago, I was positive I needed a new desk chair for computer work because my tailbone was so sore. Frugality caused me to delay this purchase long enough to realize it was immunopathology. I am still using the same chair with no problems now. :)

You can add me to the list of people who have experienced resolution of depression. I had suffered from mild to moderate clinical depression for years. I was flabbergasted when it resolved after about six months on the MP. This was completely unexpected and continues to this day despite a few emotional situations that have tested this 'cure'.

Last edited on Tue Oct 23rd, 2007 00:18 by

Aussie Barb
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 Posted: Mon Sep 11th, 2006 04:08
Reenie: Psoriasis Skin Success Story
 
in December 2004.

I would like to add a Skin Success Story, although I have a long way to go to full recovery.

I was at the point that I had to be on heavy duty systemic treatment for my psoriasis.  I was unable to keep it under control with topical meds. 

The last med I had been on was Enbrel, which I discontinued this past May, due to an incident I had which mimicked MS.  I had been on Enbrel for one year at the time. 

When I discontinued the med, I had a severe rebound effect, which lasted several months, where I was unable to put clothing on, without much pain and discomfort due to the lack of normal skin on contact points, such as knees, ankles, elbows, and even my crotch.  The crotch was the most difficult, since I couldn't even wear under garments.

Whenever I would get dressed, I'd hurt and bleed.  :(

I was scared to go back on the Enbrel, due to the possibility of further immune system damage and MS, but I didn't know what to do.  I was sunbathing as advised by my dermatologist and given a prescription for double the strength of Enbrel that I had been on, since the rebounding didn't seem to improve with time.  It just appeared my skin was in a sicker state than ever. :( 

There seemed to be no other option at that point.  Methotrexate no longer worked and I would have had to have a liver biopsy if I chose to use that alternative.  Oral steroids had caused my adrenals to malfunction, landing me in the hospital and only added to the rebound effect as well, whenever I would stop. 

In addition, I had used Cyclosporine, grentz ray tx, UV light box tx, Dovonex, (topical syn D crm) dozens of brands of Rx strength topical steroid creams, Tegison, (oral syn A) which caused me to lose my hair and nails.  My Dr prescribed a wig since I had lost more than 60% of my hair! :shock: 

Then, I stumbled across the MP!  So far, my skin has FINALLY improved, more than it has in over a decade, without exposure to sun and without the use of ANY meds, (topical or systemic) other than Benicar and the MP abx.

Although reducing D, sun and Benicar alone caused about 80-85% improvement, I've experienced some flaring during herx, but as I've progressed to Phase 2, (started on Dec 8) I'm now experiencing addtional improvement in between herxing. 

Thank you so much, Dr Trevor Marshall.  I am FINALLY getting my skin back, and SAFELY, without the use of toxic drugs!  :cool::cool::cool:

_____________________
Psoriasis PA CFIDS FMS Osteopenia EndocrineDisorders Tinnitus//Synthroid Estradiol TestCrm BP-76/46
7.04 Avoid D,Sun/8.04 Beni q6h/9.04 Full MP/5.06 P3//7.04 1,25-82,25-57/4.05 54,43/2.06 35,15/6.06 64,14

Aussie Barb
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 Posted: Mon Sep 11th, 2006 04:15
Pippit: Neurosarcoidosis: re resolved respiratory problems in Sarcoidosis:

in December 2004:

I have Sarcoidosis too, and was having respiratory problems before I started the MP.
 
It is really scarey when you can't breathe, but the Benicar really helped me a lot.
 
I was about to need oxygen, but once I got enough Benicar built up in my system and the blockade reached a therapeutic level my respiratory symptoms subsided and went away within two weeks. I was amazed at how quickly this happened. This may or may not happen as quickly for you, but it almost always does get better.
 
Many Sarc patients have been through this and survived.
 
My doctor wasn't that knowledgeable either; I knew more about the MP than he did, but I just continued to stay in close contact with the people here and found that the help I received got me through it.
 
When you get scared it's important to keep in mind that herx is only temporary, and that it will pass. It's necessary in order to get better, but Trevor's recommendation re asking your Dr to Rx Oxygen is a good one, take it slowly. I think if you have your doctor call him so they can work together on this you won't need to stop the treatment. Bear with us and we'll help you over the hump.

I can tell you from experience that I'm glad I hung in there, because I'm so much better than I was a year ago.

 
It was well worth it. My lung symptoms have never returned.
 
I am currently on Phase II and working on other symptoms now. This treatment chips away at one symptom after another.
 
Feel free to post on the Board anytime you need to clarify symptoms you are having. That's what we're here for. :D

Hang in there and stay in touch,
    


Pippit
Diagnosis: Neurosarcoidosis

Aussie Barb
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 Posted: Mon Sep 11th, 2006 04:20
Caroline wrote re resolved cardiac symptoms: Neurosarcoidosis

  

I have had chest pain, sometimes severe.  Palpitations and pressure also accompanied this pain. 
All cardiac symptoms have completely resolved following the Marshall Protocol. The sooner you begin the sooner you will have relief of your symptoms. 
Caroline
 
________________

Caroline: Sx.95, iritis 96. Pred. to 3-01. dx. as sarc./bronc. Pred., IV Medrol, MTX,neoral until 9-02. Dx. Neurosarc. Cardiac sx, hip and hand pain. M, 9-02, benicar 12-02. Full Phase I Jan. 03. 1,25 D 58. Phase II Feb. 04. October 04, 25D=10, 1,25D=34

Aussie Barb
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 Posted: Mon Sep 11th, 2006 04:22
Semper Fi wrote re LYME:  I feel great 100%. 

January 2005 
........... when working out, playing handball I hit the wall sooner, and need to take a time out, more. But, doing 50 pushups and feeling great.
 
My sun sensitivity is much better, but still try and stay out of sun. I have no light sensitivity, anymore, but still wear my glasses, when possible.  

This MP does work, for lyme, I was negative on my last Igenex test for lyme. Prior to MP was positive PCR and western blot. I will be retested again in a month or two. I had lyme before starting the MP.  
 
I feel 100%. Anyways, I feel cured, in 8 months on the MP. 
 
Thanks guys....Semper Fi: Phase 3. Lyme

Aussie Barb
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 Posted: Mon Sep 11th, 2006 04:24
Belinda wrote re memory and concentration problems and depression: sensitivities

 
in January 2005
Dave W said: " I am most troubled by the memory and concentration problems and depression. I often wonder if the MP will ever be able to address these symptoms."

Dave,

I understand what you are saying, because I used to wonder that myself. Now, at the other end of the tunnel, I have better memory and concentration than I've had in about 20 years and I never think about depression.

I would add that I often wondered whether I would "ever get my brain back!" long before I started the treatment. MP Phase Two worked on my mental clarity and mood, and then Phase Three brought me to an even higher level of clarity.

Hang in there,
Belinda

Exposure to paint, varnish and other fumes or odors used to do horrible things to me. I couldn't put fuel in my car or even be in the car when it was fueled. Cigarette smoke yards away would send me into coughing spasms that seemed to have no end.

It's all gone now. I even use hairspray myself.. except when I go to the doctor's office. I never thought I would see the day...

Reports of energy level improvement with the MP
__________________
Belinda: DX: sarcoidosis April 2001, with systemic symptoms +decade. Prior DXs: fibromyalgia, pneumonia, TMJ, 12 dental fractures, nasal polyps, chronic sinusitis. Benign growths removed prior to DX. Currently, 2+ years on MP, no symptoms, but still Herxing

Aussie Barb
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 Posted: Mon Sep 11th, 2006 04:30
Mirek wrote re general well being (physical and emotional) is far beyond what I had expected compared to 14 months ago when I started the Marshall Protocol:
 
January 2005
Hello to all Phase 2 and 3 people,

At present I am having problems controlling my GI pain and because of that I had to remind myself how far I have come along.
 
My general well being (physical and emotional) is far beyond what I had expected compared to 14 months ago when I started the Marshal Protocol.
 
At present I am seeing what third ABX works best for my situation and time will tell if the GI problems become resolved. 

My family and I strongly believe that without Trevor’s research and assistance from his dedicated team the near future was looking grim. Now there’s no looking back.

Mirek :D

Mirek: Phase 3 Member
Sarcoidosis Oct 2001, 09/03 1,25-D 55 & 25-D 20, 09/04 1,25-D 55 & 25-D 14

Aussie Barb
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 Posted: Mon Sep 11th, 2006 04:35
mort wrote: all anxiety and panic have left me:

in January 2005
I have been off of Xanax for two months and all anxiety and panic have left me. 
 
If nothing else occurs, thank-you all for this amazing result, as anxiety and panic attacks in the middle of the night interrupt living during the day and can make life miserable, not to mention the burden of enduring them while they occur. The attacks ceased after I began eliminating Vit D from my diet and lifestyle. Only after reading the above reference did I make the connection. Free at last. :)
 
Looking back at my past posts, I did comment on dropping Xanax and the cessation of panic attacks, but at the time, I thought all this was due to Benicar.
 
The significant point of my post is that decreasing levels of Vit D is actually responsible. Most importantly, I have some control in all of this.

Anxiety, panic, depression, etc., did not occur in my life until my early 30s at about the same time I began having the first symptoms of Sarcoidosis, namely fever, involuntary anorexia, and overwhelming fatigue.
 
Seventeen years later I have the answer to the bewildering symptoms beginning back then. :( Though I must say, better knowing now than never. I feel sorry for those who never learn the answer.
Once again, I find my experiences with the MP, which tend to mirror the experiences of others on MP, to be quite intriguing.

I feel quite emotional as I write, feeling the burden of panic attacks being lifted from my shoulders--quite unexpectedly, I would like to add. Thank-you, Dr. Marshall and all the others who have aided and supported you, for your valuable contribution to our lives and well-being.
_________________________
Mort: 09/22/04: MP STARTED. Sarcoidosis : Lungs Skin Heart Sinus Mouth & Throat Aortic Regurgitation. D,1,25=50; D,25=18.1 10/01/04: MEDS: Benicar40mg/6hr; Minocyclin 100mg; Advair; Effexor; Nexium.

Aussie Barb
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 Posted: Mon Sep 11th, 2006 04:39
Tobi wrote: re resolved High blood pressure and improved echocardiogram
January 2005

High blood pressure has been a problem for me since I became ill. 
 
I have tried a number of BP medications, even combining them with a diuretic. Even high doses of Beta-blocker, while helping with heart rhythm irregularities, made no difference. 
 
To my dismay, on starting the MP my BP would often be as high as 146/122 - on Benicar plus Betaloc - higher than ever. 
 
I became anxious about taking my BP and just didn't for a month or so, but decided I'd better look at it yesterday, since I have a doctor's visit coming up.
 
And, NORMAL for the first time - 115/72. 
 
This has got to mean something - I repeated it a number of times, all results around that level.
 
I'm going to reduce the Betaloc and see how I do. It took 4 months on Benicar (3 on mino) to normalize.
 
I'm really pleased.  I used to be able to "feel" the high BP in my head, like a tight bathing cap - no more. ..............

Tobi

wrote July 15th 2005: 
I've just returned from having an echocardiogram (which looked better than that done 6 years ago, which can only be good news). Left ventricular insufficiency no longer there.
_____________________
Tobi: CFS Rickettsia Conoori-Micro-Agglutination test Dr.Jadin,HHV6,Ureaplasma(all 3 culture,PCR) Misdiagnoses incl. Parkinson's disease. ,HHV6,Ureaplasma(all 3 culture,PCR) 25D 16.4ng/ml,1.25D 26pg/ml.Ratio 1,3 Blood probably NOT frozen Benicar 9/18/04  Phase 2 01/26/05 Mino 100mg 10/18/04

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 Posted: Mon Sep 11th, 2006 04:43
Dave Schlesinger wrote I am still healing and getting stronger and thinner
Date: 01-14-05

Hi Meg,
Usually I write when I reach a crisis, however now its mostly to say how great life is. Ms. Dale and you guys came through and I will be doing my first dose at 5 mg. on the pred. this week. Lost 28 of my 40 lbs I gained on the pred and really never thought life would ever be so fine. I am still majorly covering up from the sun, but as I get lower on the pred and feeling better does that mean that the effects of the sun will not be so bad and I can look forward to resuming a presarc life again? Besides the lost weight my lungs have increased capacity, my muscle tone is returning , etc. It is quite unbelievable, especially as my G.P. figured I was a goner and so did I a little over a year ago when I started this protocol. Thanks again, David

(posted by Meg from SarcInfo with David's permission) He also adds: "I will say that since than almost all the pain has gone out of my chest and I am still healing and getting stronger and thinner, although my eye pressures are good I can not deviate a little bit from the M.P. or I get in trouble with eye pressures, and the terramycin ointment in the right eye is still a necessity every night."

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 Posted: Mon Sep 11th, 2006 04:47
John D: Sarcoidosis: wrote: @ Does the MP work for CFS/FM? 

 
I am a sarc patient,  so I am not familiar with the how the MP differs for CFS patients.  However,  my understanding is we all have bacteria causing inflammation and this is fed by unusually high levels of hormone Vit D. 

It appears you do not understand yet that most of us experience significant resurfacing of past symptoms and perhaps new symptoms in the form of Herxheimer effect,  soon  after we start the MP.  It usually means most of us actually feel worse for the duration of the MP,   that means a long time....maybe 12-24 months.  Since the herx effects tell us the bacteria are dieing,  it is confirmation the MP is working for us and despite the discomfort,  it is something we want to experience as it tells us we are making progress.  For me,  it is the investment we must make to have hope for a better life for our remaining years.

Your interest in knowing how many MP patients are feeling better may not actually tell you what you are hoping to know.  Some folks do report some immediate improvements,  and I suspect these are typically people who had more severe ongoing symptoms.  However,  I think it is more common folks report worsening symptoms caused by herxing, and we are supposed to welcome that. In my case,  the last year on the MP has probably been the most debilitating year since I was first diagnosed with sarc in the mid 80s.  I have much more fatigue, dizziness, aches and pains than I experienced prior to the MP,  to the point I would be hard pressed to work full time. 

Again,  this might be different for CFS patients, but I thought you should be aware of what you might expect when you start the MP.  Perhaps the only useful statistics you should ask for are the results for those that have finished the MP,  and very few have reached that point yet.  Best wishes,  John Dresser

 After further consideration,  I thought I should mention there certainly have been some improvements for me since starting the MP.  The problem is in recognizing improvement changes, as this is a very slow progression.  We must remember the accumulation of all these bacteria causing us trouble was very likely a long slow process affecting tissues throughout our bodies.

For me,  the slow deterioration in my health was hard to notice, as I believe many of us learn to adapt to our pains and new limitations almost as fast as the problems build.  (Plus........my docs kept telling me there was nothing wrong and my complaints are normal for adults in my age bracket! I am now 53)

-Improvements I can think of now...... 
-much reduced jaw inflamation,
-better breathing (and I've thrown away my inhalers),
-no further strong heart arrhythmia episodes,  
-notable reduction in sleep apnea type episodes (although they seem to be coming back as a new herx in phase 3) 
-and the biggest and very welcome surprise is elimination of a periodic severe headache that would wake me up about 4 am. 
_________________________
John D: Sarcoidosis- Lungs dx (biopsy) 1985, 3 yrs on pred, joint/ muscle problems. 90's: teeth,jaw, asthma(?), ankle, dizzy. Stopped Zocor 4/03 w/good results. Started MP 2/04 1,25D=58.1 , 25D=18.1 --1/05 phase 3, strong herxing with abx changes

EDIT to Add: Mar 17/05 Conversation re: MP & CFS .....

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 Posted: Mon Sep 11th, 2006 05:27
CelticLadee wrote re chronic headaches, ear pressure, teeth pain and brain fog

Feb 3rd, 2005

Hello Wrotek,

When I read your story I felt your pain both physically and emotionally. You see I too had chronic headaches, ear pressure, teeth pain and brain fog that made my life almost unbearable at times. Of course this would make anyone depressed suffering for such an extended time!

Doctors, dentists & oral surgeons did many exams and tests and found nothing wrong with me. I even had a MRI of my brain! :shock: Nothing wrong there either.

Well, I just wanted to testify that Benicar changed everything for me. Dr. Marshall is spot on! When I started Benicar my sinuses drained for days. I could not believe it and wondered where all the drainage came from since it didn't show up on x-rays, etc.  But as my sinuses drained and my ears popped frequently my headaches, ear pressure & toothaches began to go away. I was and am so grateful and relieved.

I am still on the Marshall Protocol and am taking antibiotics but I never have the levels of pain I use to have in my head and teeth.

I know personally what an awful deep frustration it causes a person. I hope someday you will be able to try the Marshall Protocol and find similar relief.

My best to you,

CelticLadee
____________________
4/2001: Shingles then daily chronic headaches/malaise/chronic fatigue
7/2002: Pericarditis 9/2002: Dx: FMS  7/15/04: 25D=27.9 1,25D=63.9
01/13/05: 25D=14 1,25D=43 8/03/04:Beni.40mg.q6h 8/17/04:Full MP 10/26/04:Quer.400mg.prn 01/21/05: Phase2

Aussie Barb
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 Posted: Mon Sep 11th, 2006 05:39
BARNEY wrote re Multiple Functional IMPROVEMENTS, MCS etc.. 

 
Feb 9th, 2005
DAY 40  BP 123/74    P80

I am so thankful for what Marshall Protocol has done so far...... 

I have not had the severe headaches and neckaches I had before I started Marshall Protocol. They were horrendous and I did not think they would ever stop.
 
I have not even had to go back to the Chiropractor all of January and none of February so far.  I used to cry myself to sleep, my neck and shoulders hurt so bad. I can actually feel what my neck really should feel like, that's been a long time ago since I felt that. 
 
I also have had such a drastic reduction in smell sensitivites, it is unreal. I can handle almost any scent I come in contact with and some of them actually smell 'normal' and good. WHAT A BLESSING.
 
IF I GOT NOTHING ELSE FROM THE Marshall Protocol, IT WOULD BE WELL WORTH ANYTHING I HAVE GONE THRU.
 
2 days later says: Not needing a nebulizer any more, just realized I have not touched my nebulizer  in quite a while. This is getting better daily.  I have improved so much in just 42 days on Marshall Protocol.
 

BARNEY 
_______________________

Barney: 64jointsarc,77dxskinsarc,80dxlungsarc, 81dxasthma/migranes,95 r kidney removed(cyst)/ dxdiabetic/gallb removed,96totalhyst(cysts & endrom)01 dxfibm,04 I,25D53=25D25/Marshall Protocol/altuterol, finocet,Benicarq3hrs1/1/05,Mino 2/2/05,Quer 2/6/05

March 18th 05: wrote:

BP 103/67, P 81, BENICAR 20MG Q3H, BENICAR 40MG BEDTIME, MINO AT 9PM, 1 ACIDOP, 1 PAIN PILL

A lot of people are emailing me after the trip to our Chicago Conference wanting to know my improvements so here goes:

-All eye pressure is gone.  
-Have not had to use nebulizer or inhalers since I started MP 1/1/05.  
-No longer 'tripping' over my tongue to talk.  
-No steriod nose sprays or Zyrtec.  
-Hearing is better in right ear, can hear on phone now.
-No more pain in large toe.   
-No vertigo problems,
-no more 'bouncing off walls' or 'falling into walls'.  
-No more night sweats.  
-No more chest pain or irregular heart beats.   
-No more obnoxious urine odor.  
-No more Migraines.  
-No more restless leg syndrome.
-and BEST of all no more smell sensitivities, able to be around perfume without having a breathing (asthma) problem.

Had I not have achieved the last improvement, I would not have been able to attend the conference, it would have been impossible.

I handed out a list of these improvements to anyone who would take one at the conference. I even gave one to the lady from the FDA, not knowing who she was.

Everyday on Marshall Protocol is such a blessing to me. Yes, it is hard to stay in the house out of the sun and not eat some of my favorite foods, but, it is worth every minute of it. Nothing in the herxheimer reactions in Marshall Protocol is as bad to deal with as a lifetime of sarcoidosis is.

Thank you to everyone who made it possible for me to attend the Conference. Loved meeting other MPers. They are all sweethearts.

I can only speak for myself. I had lung sarc that left a lot of scar tissue and I had asthma. I never went anywhere without a portable nebulizer in my purse. If I got around gasoline, motor oil, PERFUME, soaps, you name it. I was so bad I could smell the other persons soap the minute I walked in their door. I would have to get on the nebulizer just to breathe.

I always came home, took my clothes off and put them in the washer with baking soda and fragrance free soap and go directly to the shower and take a shower. I was so bad the only thing I could use for shampoo and body soap was a generic lemon dishwashing soap. (I have very soft hair too)

I had gotten to the point I had refused to go to anyone's house because I could not breathe. My attitude was to become a hermit so I did not have to deal with anything.

Then 1/1/05, I started MP. The very best thing in 40 years of sarc that has come along. I have not touched a nebulizer, steriod nose spray, Zyrtec or any other breathing aids and I can take in a deep breath now. This was almost right away.

If you have any doubts as to improvement from MP, please don't. It does work so well, I am in awe.

Try it, if it does not satisfy you, then stop. It really is your choice, no one on this site twists any arms.

Hope this will help your decision. A VERY SATISFIED SARC PATIENT.

HANG IN THERE, WE WILL MAKE IT!!!!! Barney @
HER REPORT & also  MORE BARNEY STORY HERE

DAY 132, 5/12/05,
PHASE 2, DAY 3, CYCLE 4, BP 83/67 P85, BENICAR 20MG Q3HRS, BENICAR 40MG MIDNIGHT, 1 ACIDOP, 100 MINO, NO 2ND ANTIB., NO PAIN PILLS, ALL TOLLERABLE

I REMEMBER WHEN I FIRST DECIDED/STARTED MP, HOW SCARED I WAS TO START. AFRAID THAT I COULD NOT TOLLERATE THE ANTIBIOTICS NEEDED. I WAS SO ALLERGIC/INTOLLERANT TO ALMOST ALL MEDS. WORRIED ABOUT HOW LOW THE BENICAR WOULD TAKE MY BP. SCARED IT WOULD 'BOTTOM' OUT. BUT NO MATTER HOW LOW I SEE IT NOW, IT DOES NOT ALARM ME AT ALL.

I FEEL SO SAFE DOING MP. I HAVE HAD NO PROBLEMS OF CONCERN EVEN WITH JUST ONE KIDNEY. PHASE ONE WAS THE HARDEST FOR ME. LEARNING TO STAY INSIDE OUT OF THE SUN, FINDING THINGS TO DO INSIDE, LEARNING TO REST, SLEEP ETC. WHEN I WAS FATIGUED. I REALLY BELIEVE WE NEED THIS REST. YES, I AM ANXIOUS WHEN I WILL REACH THE POINT TREVOR IS AT BUT I WILL MAKE IT.

WHEN I DECIDED I WAS GOING TO DO MP, I JUMPED IN WITH BOTH FEET, PRINTED OUT PHASE 1, READ AND REREAD IT AND BELIEVED TOTALLY IN DR. MARSHALL THAT HE WAS WISE AND KNEW WHAT HE WAS DOING AND SAYING. I HAVE FOLLOWED HIS INSTRUCTIONS (ALMOST) TO A TEE. ALL HAS BEEN WELL AND I AM SO GRATEFUL FOR NO MIGRAINES AND NECK ACHES, LET ALONE ALL THE OTHER NUMEROUS GIFTS MP HAS GIVEN ME.

I AM ON MY 2ND ANTIB AND I HAVE HAD NO PROBLEMS WITH TAKING AN ANTIBIOTIC OR WITH THE BENICAR. THE HERX HAS BEEN OKAY, BETTER THAN THE PAIN BEFORE MP. I MUST ADMIT, I PRAYED BEFORE I STARTED MP AND I HAVE BEEN TRULY BLESSED.

i HAVE HAD NO HERX TODAY EXCEPT FOR BEING SLEEPY NOT FATIGUED, JUST LAZY. DOZED A LOT IN THE RECLINER.

IF YOU ARE READING MY POSTS, THINKING OF STARTING MP, PLEASE DO AND DON'T WORRY, IT WORKS FANTASTIC.

THANK YOU TREVOR MARSHALL.

HANG IN THERE, WE WILL MAKE IT!!! BARNEY @ HERE

November 2006:
I am making all of my Christmas presents this year. Me - with the most intense MCS in the world is making something with scent in it. Of course I am doing it outside and then getting a 'lid' on it before I bring it into the house to decorate it. My friend's remark was 'You and scent'....wow...thanks to MP I am able to do this....plus walk down the soap aisle of the store and go almost anyplace without a problem other than the cigarette smoke still bothers me but no more asthma attacks from any of the MCS. I love you MP.

January 2007:
I can not believe the difference in my health now from just 6 months ago...I feel so very human...if that is how to describe it. I am not running around saying that I am hot all the time...I did not even wear winter clothing in the winter before MP as I was so hot I could not stand it. Now I am wearing sweatshirts and am not overly hot at all...what a blessing.

Also, the MCS (multiple chemical sensitivites) are almost totally gone. No one who has not had this problem will ever understand how difficult all those smells were and how ever strong they appeared to me....it even blows my mind now that I don't even smell any of what I used to.

September 2008:
Thanks to MP, I am a wife again.......got married on 08/08/08. A wonderful fairy tale wedding which was outside but in the shade as the sun went over the horizon.  This marriage would not have been possible without the help of MP because he uses aftershave and all the things that a man uses that would have driven my asthma crazy.... no problems....he understands how my MP works and knows that we could not be together without the MP....so he always sees that I take my Benicar....and all other meds that I need....and rest and staying out of the sun as much as possible.

Light exposure: more since I am married again....grocery store, doctors (for him and me), scrips, etc and I still look after Granny. Much more outside activity than there used to be but I still wear long pants, long sleeve shirt or jacket, hat, shoes and socks and, of course, my Noirs.

also: Barney turned the corner
______________________
BARNEY: 64jointsarc, 77dxskinsarc, 80dxlungsarc, 81dxasthma/migranes, 95 r kidney removed (cyst) / dxdiabetic / gallb removed, 96totalhyst (cysts & endrom) 01 dxfibm, 04 I,25D53=25D25/MP/, finocet,Benicarq3hrs1/1/05,Mino 2/2/05,Quer 2/6/05

Aussie Barb
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 Posted: Mon Sep 11th, 2006 05:44
Carole writes: celebrating my most recent test and CT scan results:

Feb 10th, 2005
Hello to all--

I'm very pleased to report that I have reached another positive milestone in
my plight to overcome this disease!  One year ago I was so toxic (actually
near death) when I found this site, and now I am celebrating my most recent
test results:

January 2004--
1,25 D--85; 25-D--41; ACE--68
July 2004--
1,25 D--50; 25-D--33.48; ACE--45
January 2005--
1,25 D--25; 25-D--22.56; ACE--37

All other blood tests are within "normal range" and the CT scan of my chest
compared with previous scans during the past year) shows continued decrease
in size of the mediastinal and hilar lymph nodes, with only small carinal
right hilar lymph nodes remaining.
I have recently begun Phase II (again) and am not suffering the excrutiatingly painful herx as in the past.

THANK YOU!  I look forward to seeing you at the conference!

Carole

From ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Carole
sarcinfo

see also:
Carole: MY MP Story
Carole Living Proof of MP
Carole: Edema resolved and Muscle strength and tone return.
Carole: History and Improvements...

______________________
Carole: PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc  |1/04 1/06: 125D=85,34; 25D=41,14| ACE=68,43|

Aussie Barb
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 Posted: Mon Sep 11th, 2006 05:57
Marianne L. wrote re walking, balance, fine motor skills, swallowing, talking, strength, weight: Improvements....

Feb 18th, 2005
here... in Progress Report: a sign of things going in the right direction..

I’m 6 months into the MP and am on the 6th day of my 7th Phase 2 cycle. I remain on the second level of Z and have been on that dose for five cycles now. I still herx noticeably on B + M + Z (e.g. strong chills, night sweats, dizziness, occasional headaches, occasional shooting pains in foot soles, aches in shoulders, arms, neck and back, and fatigue). All the herxing makes it difficult to identify progress, still upon reflection I’ve come up with the following status:


now have the fine motor skills of a 6-year-old. Hardly a cause for celebration when you’re 38 and not where I want to be by a long shot, but considering they HAVE been like a 2-year-old’s, it’s a move in the right direction

  • my speech remains painfully slow, unclear and monotonous, but still it must have improved some because now I find myself actively engaging in conversation – before I would only reluctantly answer when spoken directly to, I just couldn’t face the agony of repeating myself five times before people got the gist of what I was trying to say. Being understood doesn't seem so much of a problem anymore 
  • people have commented that I seem more like my former self now, that my eyes are less ”glazed over” and I’m more “there”
  • I’m slowly regaining the inclination to LIVE and not just be alive. After falling ill and becoming seriously disabled in the space of a few months I became completely withdrawn and didn’t want to participate in anything. Now I find I actually (occasionally :) ) FEEL like leaving the house. The other day I even went out to vote in the Danish general election. And I’ve been to the hairdresser for the first time in over two years. And am now considering getting highlights and a perm. Which wouldn’t matter at all, except that for ages I couldn’t care less how I appeared, so it tells me I’m beginning to see myself in some sort of social context again. If I’m not careful people will actually soon see me wearing my NoIRs…..it wasn’t so difficult to comply when all I wanted to do was stay in my cave - alone - anyway……
  • Marianne

    March 17th 05: wrote: 7 months update
     
    I continue to see slow improvement in my fine motor skills – especially in my right hand which is worst affected by ataxia (and unfortunately I’m right handed).
     
    It no longer requires ALL my concentration to control and drink from a glass with one hand only without spilling.
     
    And I can now hold on to and use a spoon more normally (like holding on more loosely and move it about with my hand and fingers as opposed to clutching on tightly and using my wrist and lower arm to generate any sort of controllable movement).

    Marianne @
    Progress Report


    added May 16th 05: further improvement: 

    9 months on MP, just over 5 months on Phase 2, 40 mg Benicar q6h, 100 mg mino q48h, 4th level of zithromax every ten days.

    It’s been two months since my last update so I think it’s about time I did one:

    Since I last wrote, improvement has continued to be really slow but it has been there all the same. For a few weeks progress (and herxing) stood completely still which was disheartening even though I KNEW I had too much light exposure for a short while (I’ve been given a three-wheeled scooter by the local authority and had to prove I used it – it has a timer – in order to be allowed to keep it. As it is my only means of leaving the house independently and I don’t expect to get out of my wheelchair for a few years – if ever – I decided to do my bit to meet the requirements for minimum usage, i.e. drive, drive, drive, even in daylight, to get the timer up……good news is I won’t have that problem again as I’ve now gotten the local authority to acknowledge my situation so they’ll leave me alone to only use the scooter as much – or little – as I require in future).

    Anyway, my herx symptoms have been: Chills, night sweats, headaches, muscle ache, fatigue, infrequent shooting pains, infrequently increased ataxia, various itches on feet, chest and back.

    Improvements since my last update:

    • Increased ability to walk with zimmer frame (am nowhere near having the balance to walk unaided). When my physiotherapist is here I now manage to stagger a distance of about 15 metres, which is at least 10 metres more than I did at any point in the previous 1½ years
    • Improved balance in standing so I’m now able to e.g. pull a t-shirt over my head without having to sit down first to avoid falling
    • Continued improvement in fine motor skills in hands, witnessed e.g. by
      • Ability to cut nails without being complete liability to myself with nail scissors (a dangerous weapon indeed in the hands of the ataxic!) :)
      • Ability to move my finger from stretched arm position to touch the tip of my nose. This is commonly used in neurological examinations and I’ve performed this exercise numerous times since falling ill, first for various doctors, then just to see where I’m at. Just a few months ago, somewhere on my finger would hit somewhere on my nose. Now I can do tip to tip on most days
      • Ability to now pour myself a drink with one hand only (if container is not too full) as opposed to having to hold on with two hands for control
    None of my improvements so far change how disabled I basically am, still they motivate me to continue because I can tell that, however painfully slowly, things ARE happening.

    Marianne

    Added August 16th /05

    New improvements (or rather things I’ve noticed in the past month, I’m sure it’s been a gradual process):
    • Improved swallowing function – when I fell ill I could only drink absolutely miniscule sips of water at a time and even then I would often choke and cough violently. The other day I suddenly noticed I’d just drunk half a glass of water in one go, without choking or coughing or even thinking about it
    • Stronger voice – friends recently commented that I’m again able to raise my voice to tell my children off  :), a year ago, they said, they could hardly hear me when I spoke
    • Improved strength/coordination in hands – when I had a pizza the other day I could cut it myself. The last time I had one (about two months ago) my husband had to cut it for me
    • Normalization of weight/metabolism - when I fell ill just over 3 years ago I lost 10 kgs (about 20 pounds, sorry can't remember the exact conversion) in the first 4 months. There was no particular reason or explanation for it but as I didn’t lose any more weight, it wasn’t really a problem. But no matter what I ate I didn’t gain weight after that. I could eat all the cakes, crisps, chocolate etc. I wanted, it didn’t make any difference whatever to my weight. Until the last few months. I’m definitely filling out again (not more than what is in keeping with what I eat) and that indicates to me that my metabolism is returning to normal
      So, onwards and upwards!

      Marianne
    ____________________
    Marianne: DX: Cerebellitis, Borreliosis (Lyme) MAIN SX: Ataxia, dysarthria, nystagmus June 04: 25-D=26.4; 1,25-D=40 (frozen?) MP: 16-Aug-04
    Phase 2: 12-Dec-04 Phase 3 (3 abx): 15-Dec-05

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 06:01
    Mic wrote:  changing sleep Meds

    Mar 16th, 2005
    Just a line to thank Trevor for the heads up on changing sleep Meds. Changing from Clonazapam to Diazepam is proving to be difficult but I am starting to sleep better. This is very encouraging as I hope to start Benicar again and be able to sleep through the adjustments. I should post this in success stories but since I am already here I'll just pop it in.

     I have been off of Vitamin D for 3 months now and following all of the lifestyle changes for the MP. In that time painful ulcers that started appearing on top of my head about 5 years ago, which I thought were allergy related have completely disappeared. Thank You!

    I was having severe pain in my neck/back area that would come and go to different degrees. I was using Darvon for the pain. It is almost completely gone now and I have full range of motion pain free from side to side. Thank you!

    Lymph Node under my left arm continues to diminish in size. Almost undetectable by touch at this time. 
    I do realize however that I will need the antibiotic therapy along with the Benicar to completely cure these conditions. I was overdosing on Vitamin D to the extreme. I am starting to feel better as you guys have said by making these changes alone.

    I had to quit doing stained glass work because my hands kept flaring. So I am in the process of trying to find work in a less brightly lit area. As soon as I make these changes I look forward to getting started on the MP again and I am hoping I will be able to get at least some sleep throughout treatment. Anyway just the knowledge that you guys have given me thus far has made my life a more comfortable experience. 


    Thanks Mic @ First day with Ben 
    _____________________
    Mic: Lymph,Lung,Neuro,Jnt,Sarc/Dx1977/CFS,Fibromyalgia(PLMS,Remeron,Klonopin)BWrk1-28-05/EBVact Ace59,1,25D=40.3/25hyd=22.9/MP/Ben/st3-14-05 40mg/Q6H/Pre.MP=JntInflam/Fatig/Second try on Ben Tremors/Twitchs/SwlenLmphs/SlpFrags/MentFog/RLS

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     Posted: Mon Sep 11th, 2006 06:05
    Belinda: wrote: re The journey to recovery

    Research Team
    Mar 17th, 2005
    Fiona,
    Congratulations on the successes you've noted on the MP. One of the things we talked about at the conference last weekend was the journey to recovery. It's a slow, insidious process, much like our original descent into disease and debilitation -- only in reverse.

    What happens is that success comes in small victories that have a cumulative effect. Patients have continued "eureka moments" where they notice they are doing and are able to do things they couldn't do prior to the MP. In the end, though, patients arrive at a level of functioning that they never had before the MP or their diagnosis.

    This journey to recovery likely is affected by several factors, including the patient's bacterial load, compliance with the treatment and tolerance to Herxing, for example. My guess would be that it could take one to two years for major symptoms to resolve, but recovery may still ongoing after that time. For example, it took two years to get normal feeling back in my three numb toes. This was a small thing, and resolution of that symptom was NOT a high priority for me. I would have been quite happy with all my other progress to health and symptom resolution.

    All the best,

    Belinda
    __________________
    Belinda:DX: sarcoidosis April 2001, with systemic symptoms +decade. Prior DXs: fibromyalgia, pneumonia, TMJ, 12 dental fractures, nasal polyps, chronic sinusitis. Benign growths removed prior to DX.
    Currently, 2+ years on MP, no symptoms, but still Herxing

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     Posted: Mon Sep 11th, 2006 06:10
    Chris wrote:  sleep apnea, energy levels, muscles improvements.

    Mar 21st, 2005
    Status:

    Just prior to starting the MP, I was directed to a sleep clinic for possible sleep apnea. This has gone away. While most nights I wake up after 6 hours to take the Benicar, I usually can go right back to sleep.

    My energy levels are up, and the sand=in-the-works feelings I used to have in all major muscles has backed off to a once-in-a-while thing. I am still very susceptible to tendonitis type troubles if I go bowling or shovel snow, or other non-daily exertions. 

    see also Chris Sarcoidosis: 20 months later ... and 20 months better
    _________________________
    Chris: sarcoid diagnosed 1991, probably started 1983 D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue

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     Posted: Mon Sep 11th, 2006 06:13
    John D wrote:  condition and stamina improved

    Mar 22nd, 2005

    Just to log my progress a little here:  Today was my first real venture out to test my current condition and stamina ( since starting the MP one year ago). 

    I was able to do some downhill skiing for about a half day.  It was mostly thick fog with clear patches moving through and varying all day,  so I did not get a huge dose of unfiltered sunlight.  I was pretty well covered up,  had my bolle glasses and Keto cream on what little of my  face was exposed. 

    The top of Big Mountain is 7000 ft asl,  so this was a nice test of my lung condition.  Lungs showed definite improvement under stress at this altitude,  which makes me very happy!  My legs also surprised me as they held up about as well as I could ever expect,  since they have been given almost no exercise in the last year,  and even without sarc,  would expect to be burning after  a little bit of skiing.  Started to feel myself crashing a little bit at noon, so took a time out to get a snack and my Benicar dose and water.  I managed to ski a bit more after the break, but decided to be prudent and head down the mountain after about an hour after lunch.  Good thing, as I was pretty tired by the time I finished up.  Legs did get pretty wobbly by the end.

    I started the day feeling about as good as I get since starting the MP,  but that is probably due to the fact I am probably on the tale end of the current abx combo cycle,  in phase three.  I headed home for a nap, and now feel ok at 6 pm,  just a little eye soreness for the first time today.  It was great to get some fresh air and exercise which seemed to help loosen me up some.  I still sense much more fatigue than would be normal, so I guess I still have a way to go.    John Dresser 
    __________________
    John D: Sarc- Lungs dx (biopsy) 1985, 3 yrs on pred, joint/ muscle problems. 90's: teeth,jaw, asthma(?), ankle, dizzy. Stopped Zocor 4/03 w/good results. Started MP 2/04 1,25D=58.1 , 25D=18.1 --1/05 phase 3, strong herxing with abx changes

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     Posted: Mon Sep 11th, 2006 06:18
    Julia wrote: ACE level has come within the normal range!

    Mar 25th, 2005
    For the first time since August 2003 when I was first tested, my ACE level
    has come within the normal range!

    8/03    234 (27-100)
    9/03    211
    10/03  189
    1/04    209  Ca 2.23 (2.22 - 2.66)
    6/04    162  Ca 2.31
    10/04  117
    2/05     66   Ca 2.33

    Other liver and kidney function tests I was told were normal.

    Good old MP!

    Julia @ sarcinfo 
    ________________
    Julia: Sarc dx Spring '03. No D tests. uveitis, hypercalcaemia. No Pred. MP via GP. Light/D restriction 8/03; Mino 2/04; +Beni 5/04. Phase2 8/04, Phase3 11/04. Beni40mg q8hrs. 25D 6/06: 9.2

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     Posted: Mon Sep 11th, 2006 06:22
    Freddie Ash wrote re pulmonary response to the MP.


    March 23, 2005
    "I too have good news about me. I have been on the benicar since June 23, 2004 and wearing the sunglasses since first week of Jan 2005 and today at the lung doctor they did an x-ray on my lungs.  They had done one back on Oct 6, 2004 and at that time said my lungs were better, to not come back for 6 months. 


    Today the x-ray said that the lungs were even better than the last time.  Also my B/P was 120/58, my temp 96.9(has been 92-96), my breathing test(by blowing into a tube) was up from 490 to 530 and my 02 was 99(had been 92-94).  I credit the benicar and cutting out the vit D to all of this, thanks to Trevor Marshall.
    Remember we are all in this together and I am pulling for US. "

    Your friend in sarcoidosis 
    Freddie j
    sarcinfo

    January 2007:
    I am now 67 and have had problems with sarc since when I first went to doc with symptoms in Aug 1972 just before my 33rd birthday.  I have been fighting sarc for over 34 years now. 
    Remember we are all in this together and I am pulling for US.


    March 2007:
    Lately I have noticed that my sore elbows (that I have had since the late 1980s) is gone, NO MORE.  I was at my doctor (not the MP doc) and I weighed 154 (same since my last bypasses Nov 2003), B/P 104/58, heart rate 74, these all the same since I have been on the Marshall Protocol.

    see also
    Freddie: great eye report 18 months of MP
    ___________________

    Fred: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, plavix, protonix, oxaprozin, furosemide, beni(4xday), mino(myrac)25mgQOD, O2night, 1/8/04 vitD7, 1,25D43; 5/30/03, 25D-11.7, 1,25D-32

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     Posted: Mon Sep 11th, 2006 06:27
    Belinda wrote re Sun & Light avoidance

    Research Team
    Mar 25th, 2005

    I wear my brimmed hat, NoIRs, long sleeves, slacks, and gloves and walk outdoors for *an hour* every day, in the sun. I run whatever errands must be done in daytime, and travel as needed, taking the same precautions. As a result, I've had no problems as a result of traveling in the past few months, whether in an automobile or airplane.

    Before the MP, I would get sick on vacation, when I always experienced more sun exposure. I just didn't know why I had more headache, nausea, fatigue, increasing pain, headaches, dizziness, etc.

    Today I received a new sharp-looking pair of Bolle sunglasses, and I am thrilled to have another great tool. Does taking precautions against sun/lights bother me? No! I was never a person who could well tolerate even an hour in the sun, and I am happy to now know how to deal with it and remain able, strong and well. 
    ___________________
    Belinda: DX: sarcoidosis April 2001, with systemic symptoms +decade. Prior DXs: fibromyalgia, pneumonia, TMJ, 12 dental fractures, nasal polyps, chronic sinusitis. Benign growths removed prior to DX.
    CURRENTLY: 3 years on MP, no symptoms, some Herxing. Got my life back!!

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     Posted: Mon Sep 11th, 2006 08:03
    DON wrote: CFS symptom report card.
    Apr 20th, 2005
    I feel as though I still have a ways to go before satisfactory remission which will require a continued shifting and mixing of the medications I have previously consumed, but the situation is looking good and I plan to progress.......Don 

    -Brain fog= complete remmission
    -Concentration= 75 percent improvement coinciding with brain fog recovery
    -Fatigue recovery= 75 percent improvement, usually 24 hour turn around compared to 48-72 hour pre-MP
    -Stress fatigue= 50 percent improvement
    -Exertional fatigue= 25 percent improvement, still not ready for routine exercise
    -Tinnitus= no change, very pronounced, increases with consumption of abx, leading herx indicator
    -Excessive perspiration/heat intolerance= 25 percent improvement, still very pronounced during exertional/stress periods
    -IBS= 50 percent improvement, still experience 1-2 times monthly
    -Weight gain= no change, may not change until I recover enough for routine exercise
    -Hand pain heel areas intermitent= no change
    -Cold/numb feet intermittent= 50 percent improvement
    -Skin rash/lupus like disk shape = 50 percent improvement, only visable on shoulder areas after hot showers
    -Mouth blistering= no change
    -Irritability= 50 percent improvement, still prone to infrequent occurances of road rage with certain L.A. drivers
    -Headaches= 75 percent improvement, once every few months, resolves within hours
    -Sleep= 75 percent improvement, but varies with herx activity
    -Fermented alcohol intolerance= dont know, havnt consumed since on MP medications
    __________________________
    DON: Phase 3: Long term CFS patient, Benicar probe for MP, Start MP 7/04, 125/75/68 bp/hr avg. 25D=34,125D=44, 9/23/04 test before phase 2 start, ACE1=50, ACE2=73 HIGH, CRP=1.3 HIGH phase 2- 9/04, phase 3- 11/04

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     Posted: Mon Sep 11th, 2006 08:08
    Gary wrote:  out late: now at work, no fatigue, functioning and productive, mentally and physically.

    May 9th, 2005

    Well I'm going to consider today a milestone.  In Phase Three.   Last night I was out late, and I only had 4 hours sleep before time to get up for work.  Well here I am, at work, functioning, no fatigue, and I keep being productive, doing either mental or physical work.   WOW.    Several months ago, if I deviated at all from my sleep schedule.. even got up one hour early, I was pretty useless for the day.

    So thats a milestone for me.   I'm still getting noticable herx on this combo - so still more bugs to kill, but so far this is great.
    ______________________
    Gary: Phase 3: dx sarc 4/00- biopsy. Neuro, lymph, eyes, fatigue, liver, kidney. Benicar 5/04. Currently full dose all meds, w/Benicar 4x/day. Moderate herx, mostly days 3 and 5. Still some symptoms, but reduced.

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     Posted: Mon Sep 11th, 2006 08:14
    roo wrote: I am feeling soooo much better.

    May 13th, 2005

    I am more than happy to discuss the Marshall Protocol with anyone who wants the info.  After being on the protocol for almost two years, I am feeling soooo much better.

    Thanks again, Peggy

    see Peggy's 3 year progress report Apr 8th, 2006
    _____________________

    Peggy: dx: lung sarcoid by biopsy 5/03 125D-97;25D-33. 9/2003 125D-57; 25D-19. on protocol for 2 1/2 yrs. Stg 3. finished 3rd abx. bolle100 lens. Benicar 3xday at 40mg. mino100mg every other day. feeling very good.

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     Posted: Mon Sep 11th, 2006 08:20
    Moxie wrote: CFS FMS review of improvements

    May 20th, 2005

    A review of the past 10 weeks on Phase 1 before starting Phase 2

    -Definite improvement in FM pain. Now only slightly tender trigger points but all over "body fire" has gone.

    -Definite improvement in right hip pain which I have had for the past 3 years.
    -Pain radiating down from liver area was constant all day every day and night. Most nights took 1/2 Mersyndol Forte ( or more) for pain relief and sleep. Have not had any pain medication for past 3 weeks.

    -Have been able to come off Citrus Seed Extract (tastes just like paint stripper) which I have been on for the past 4 years. Was never able to get off it as I always descended into dreadful fatigue and depression. I believe it just kept my critters at a manageable level but that has changed for the better now.

    -My breathlessness is improving. Some days I actually breathe normally all day!! I tend to get more breathless when herxing in that area, but other days are much improved.

    -My sleep problems that occurred when I first commenced MP have improved as well. They settled down after about 4 weeks.

    All in all, not a bad report for a few weeks of treatment - onwards and upwards.....
    ___________________
    Moxie: CFS 24 years - FMS. Benicar 4 daily - Phase 2 started 16/5/05 - Phase 3 started 10/5/06 Metformin 500mg 1/2 bd. Vit D 100nmol/L (41.6) 1,25 D 61nmol

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     Posted: Mon Sep 11th, 2006 08:24
    grace wrote: CFS improvements

    May 20th, 2005

    day 101 100mg mino qod x2

    I have finished 7 cycles of 75mg and went ok. I had 5 pj days herx, and was able to sit up most of the time.This came with a real temp etc, [I hate the cfs days when I am to sick to sit up] . Mother's day was in the middle, but I and the family was alright about it. I have bump up to 100mg mino 
    The last week or so has been real EXCITING.

    I will explain...I have a moon face and am overweight with a chin or two, no not three. Several years ago I had my wisdom teeth removed while in the chair. He was a bit brutal. My jaw was never the same, but it was no big deal.

    Since cfs my jaw has been getting worse and weak but what doesn't for pwc.

    Over the last week or so when I have been looking in the mirror I notice my face was flatter and slowly getting a bit hollow on long the jaw in front of my ears. I never realize it was swollen there.

    After a few days I ask the family if my face look different-well they all couldn't believe it. We could SEE MP working. I am  still getting herx with right ear/jaw. The strength I have to chew food -meat has never been so enjoyable, [still not as good as fish]. I can't stop thinking what it would be for my whole body to be this strong .....
    my sleep pattern has been like a 'difficult baby', but i just go with the herxs

    Jul 27th, 2005
    Grace wrote: on the better days it is hard not to over do things. I keep rediscovering limits.

    I can't remember my last 'crash', last couch, last bed, last can't sit up day. nor last time had to sit to dress after shower.

    Grace....

    see further
    Grace: Now - I never lay on the couch or recline: March 07
    GRACE being able to do things..
    Grace All the things I can do
    Grace Muscle wasting Muscles regained and healing
    ______________________
    Grace: CFS CFS, Oct04| D25=26 D1,25=48/ feb05 D25=22 D1,25=52 / Jun05D25=9, aug06 D25=9 D1,25=48, feb06 D25=10 D1, 25=41 NoIR endep/ MP PHI Feb05/ Beni Q6H/ Phase II JULY05 /Phase III June06

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     Posted: Mon Sep 11th, 2006 08:28
    KFaucher wrote: CFS: CWD and back pain

    May 23rd, 2005

    Re DaveW writing "I have just recently viewed the Chicago Conference DVDs and was quite amazed to see that the strong association that Dr Greg Blaney perceived between the CWD and back pain."

    I have had lower back pain off and on for 30 years. As a teen, I had scoliosis and my spine moved about 15 degrees out of alignment. If anyone had suggested that my back pain was related to my CFS, I would have considered them nuts.

    Last year my back began hurting in july and just kept getting worse. I began benicar in december and the pain went away in less than 2 days! The only back pain I have had since has been during very strong herxing. The benicar relieving pain showed me that it really does reduce inflammation. The return of pain during herx shows me that the back pain was indeed due the infection.

    5 1/2 months into the protocol, my back feels better than it has in years!

    Ken @ Back Pain

    see also
    Ken Faucher: Phase 3 update - 2 year progress
    KFaucher/ Ken: CFS: camping trip
    KFaucher/ Ken:  CFS 20 years: how much better I can get.
    KFaucher: CFS: the MP does work! 6 months on the Marshall Protocol!!!!
    ___________________
    Ken:  "good days & bad days & going half mad days" J.B.
    CFS 20 years 25D=30 1,25D=57 8/2/04; 25D=19 1,25D=48 12/2/04; Avoid Sun 9/12/04, NoIR 10/1/04; Benicar 12/2/04, phase 1 12/10/04, phase 2 4/5/05

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     Posted: Mon Sep 11th, 2006 08:34
    Guss Wilkinson wrote:  My Marshall Protocol Experience..
      

    May 25th, 2005

    When I first heard of the Marshall Protocol, I was very sceptical – it sounded too good. Having had psoriasis all of my life (I am 41-years old now), there has been no end of people almost queuing up to offer me advice, or point me in the direction of a hitherto little known cure – some stranger than others, believe me. 

    Of course, none of them worked. I have been prodded with acupuncture needles; basted from head to foot in all sorts of creams and ointments, some very foul smelling, some quite nice; put on weird and wonderful diets (each one contradicting the last); I have been hypnotised (at least, she said I was – I didn’t feel a thing apart from the pain of parting with another $100 note); I have been prayed for (I’m not religious); I have had colloidal minerals, fish oils, potions, herbal poultices and I have been told to wear crystals, stare at coloured lights, have caffeine enemas, meditate and rearrange my room to let in the positive Chi from the north. 

    And then there were the real doctors. They gave me stuff too. Sometimes it was creams (sweet smelling and foul) – the only difference from the ones advocated by the snake oil peddlers mentioned previously was that some of these ones really hurt. I have also been injected; given pills that made me feel ill and forced to sunbathe (I have been burned more times than I like to reflect upon). With the real doctors, some of what they did worked – with the fake ones, nothing worked – ever. The problem was the psoriasis always came back. 

    I have always been blessed with self confidence – one that has been boosted by the fact that from a very young age, I have been married to a beautiful and adorable wife who truly regarded beauty as being more than skin deep – and, believe me, there has always been lots of skin. In fact, we always joked that the only way to get me truly out of bed was with a vacuum cleaner!! 

    One day, I just threw my hands in the air and said: enough is enough. No more treatment for psoriasis. From now on, it would not be my problem – it would be other people’s problem!! 

    Then in 2002, I was diagnosed with Sarcoidosis. By the time I was eventually diagnosed, I was sure that the end was neigh. I was exhausted: I couldn’t breathe; the coughing; my once superb fitness was gone; I had not had a good night’s sleep in 15-years; the kidney stones – they say that pain is character building. 20 stones in one year – I must be one hell of a guy!! I was also finding it hard to concentrate on anything and my memory was shot. Was I going mad as well? 

    With the Sarc, the psoriasis was long forgotten – it was the least of my problems. 

    It didn’t help that the doctors didn’t have any answers. They threw prednisone at it twice (two 9-month courses). Each time, it turned me into a fat and very bad tempered monster. That my wife and kids stuck it out is beyond me – they are heroes!!

    And the damned Sarc came back each time – and worse than before. And to add insult to injury, the psoriasis flair after the prednisone courses was wicked. Not only was I ill, but I also looked awful! 

    And then, out of the blue came an e-mail from Meg. She had read a cry for help on the World Sarc message board and decided to inform me of the Marshall Protocol.

    I nearly deleted it on sight – another snake oil peddler. I hope that hell has a very special spot for those parasites!! 

    I have no idea why I didn’t delete the message. It must have been a Sunday morning and I must have had some time to kill because I clicked on the link she provided and started reading. I have enough medical and scientific knowledge to know that what they were saying looked and sounded ok. I was now a little interested, but I knew that I needed help to evaluate the science in detail. 

    One of my best friends is a doctor – an Accident and Emergency Physician. He and I took a couple of weeks to look through all of the articles and his response was that he didn’t believe any of it, but the science was sound. 

    I asked him if it was worth a shot and he replied that given the alternatives, it would do no harm. He warned me very seriously not to get my hopes up. I didn’t. I had been down that road too many times before – I would give it three months and no more. 

    So, in the middle of October 2003, after enormous difficulty and having to import the medication privately, I started the Marshall Protocol. 

    I know that compared to others that I have come across in real life, and in cyberspace, I must have seemed mildly afflicted. I still worked full-time, I studied part-time, I ran a martial arts club (all be it from the side-lines); I was on the board of trustees of our local school; I was a father to my children, a friend to my friends and a husband to my wife. But I was running on fumes and something had to give. The MP was actually my last hope before I would have to start dismantling my life – and in my heart, I knew it was a load of rubbish!! 

    Looking back on it, I herxed big time. I felt really crap. I was dizzy, I found it hard to think, I couldn’t move without coughing till I puked, my sinuses were flooding me and I was in pain – everywhere. I was feeling worse and they were telling me that this was good because it meant that everything was working. How did I know that it wasn’t my Sarc that was getting worse? I was getting worse, but it was claimed that I was actually getting better – do you know why I believed it – sceptical me?  

    It was because from day 1 of the MP, I slept like a baby – for the first time in 15-years. It was heaven, it was blissful, it was ecstasy and it was one huge problem less. It was worth all the hassle and expense for that one reason alone!!! From that moment, guys, you had my full attention!! 

    I stuck at it. I had real problems telling when I was herxing – I was so used to feeling bad that when a new symptom came along, I didn’t notice. I could not tell the difference between the Sarc and the herx. I decided that everything was herx, even hangovers! 

    But ever so slowly, I started to emerge out into a world without hurt, without brain-fog and with hints of more energy – and guess what? My Psoriasis started to clear. What a bonus!! I was not expecting it and this time, it was not coming back. I went from 70% coverage to 90% clear – very little remains. 

    Yes, I am still herxing but it is waning. Yes there are set backs as I try new combinations of antibiotics – but nothing like it was. The mind is a strange thing - I now have to struggle to remember how bad I felt. 

    For those who want to read my full story, go to my website on
    http://www.bugeikan.com and scroll down on the table of contents until you see a link called Sarcoidosis. Please excuse the martial arts slant to the articles I have written there. 

    Get well people and thanks Trevor, Meg and team.  

    Stay tuned! 

    Guss


    Guss Wilkinson: Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. Started MP: Oct 2003; Phase III since July 2004; BP 100/60. Pretty herxy at the moment! Wife also Dx with Sarc May 1995 - symptom free.

    June 13th, 2005 Guss wrote:
    Hi All
     
    I recently re-read some poetry that I wrote back in the middle of 2003, before I had even heard of the Marshall Protocol. I was ramping down from my 2nd failed course of Prednisone. I was feeling absolutely terrible and the speed of my decline convinced me that I actually didn't have long left to live.
     
    It is very easy to forget just how bad you felt when you start to feel well again and I have been feeling fairly good for some time now (with the odd herxy interuption - but nothing more than an irritation).
     
    I had never written poetry in my life and I haven't written anything since. Reading it now brought all the emotions back to me - memories of how bad I felt.
     
    I'll share them with you here.
     
    Hang on in there folks - it does get better!!
     
    Cheers
     
    Guss
     
    Random thoughts
    (Dedicated to all suffers of Sarcoidosis: by Guss Wilkinson)



    Who the hell is that fat guy in the mirror?
    His face is all swollen and puffy!
    Oh yes, ‘tis me and Mr Prednisone!
    No, it can’t be me: I’m fit and lean and full of energy?
    But that was before...

    ...Dad, please come and play football with me?
    Sorry mate, I’m just so tired.
    Dad, will you bike with us?
    Sorry guys, not just now.
    Dad, we’re playing monopoly – do you want to join?
    I’d love to son, but I’m just going to have a lie down.
    Dad, can we play black jack?
    Maybe tomorrow boys, I’ve had such a hard day.
    Dad, can you read us a story?
    Ask your mum, I’m busy.
    Dad, do you want to join us for a walk?
    I really have to rest guys.
    Dad, how about some chess?
    Not right now Jake – thanks for asking.
    Dad, will you take us swimming?
    I’m not feeling to good Sam.
    Dad, this is a great film, will you watch it with us?
    I’ve seen it before.
    Dad, can I borrow your computer?
    No!
    Dad, can you make us your pancakes?
    Mum’s cooking you fish tonight.
    Dad, can you build us some Lego?
    I will, but not just now.

    Dad, will you talk to us before we turn off the light?
    No, it’s getting lat…….Ok, what do you want to talk about?...
    …When are you going to get better?
    I don’t know, but real soon I hope!
    Dad, when are you coming off your medication?
    As soon as I can, mate.
    We love you Dad!
    I love you too, guys – more than anything.
    You’re the best dad in the world!
    ….swallow….Note to self: I must remember to stop saying no!
    Good night, sleep well – I’ll see you in the morning!...

     
    Dad, please come and play football with me?
    OK.
    You’re the best dad in the world!
    Dad, will you bike with us?
    Sure thing boys.
    You’re the best dad in the world!
    Dad, we’re playing monopoly – do you want to join?
    OK then, set it up.
    You’re the best dad in the world!
    Dad, can we play black jack?
    Yep, let's do it.
    You’re the best dad in the world!
    Dad, can you read us a story?
    Of course I will.
    You’re the best dad in the world!
    Dad, do you want to join us for a walk?
    Great.
    You’re the best dad in the world!
    Dad, how about some chess?
    Go for it.
    You’re the best dad in the world!
    Dad, will you take us swimming?
    Why not.
    You’re the best dad in the world!
    Dad, this is a great film, will you watch it with us?
    Make room for me then.
    You’re the best dad in the world!
    Dad, can I borrow your computer?
    Yes, but be careful.
    You’re the best dad in the world!
    Dad, can you make us your pancakes?
    That's a good idea.
    You’re the best dad in the world!
    Dad, can you build us some Lego?
    OK.
    You’re the best dad in the world!

    DEEP INSIDE – THERE IS A RESERVE: IT CAN BE VERY HARD TO FIND, BUT IT’S THERE – FIND IT, BEFORE YOU ARE FORGOTTEN!

    A Piece of Cake: by Guss Wilkinson

    Pour 1-cup of insomnia, 1-cup of fatigue,
    And 1-cup of irritability into a bowl,
    Pour in 1 full pint of frustration,
    Stir in some pain, breathlessness and confusion,
    Add some pills, anything you like – it makes no difference,
    Bake in an oven of self-pity until firm,
    Sprinkle on a pinch of hope before serving.
     
    See! With Sarc, life really is a piece of cake!
    (Inspired by Bryce Courtney)

     
    The Book: More for Sarcoidosis people - by Guss Wilkinson

    Lying in bed turning the pages of the book,
    That book, the story of my life,
    How many pages has this monster already written?
    I certainly can’t tell,
    I look at the pages as they write themselves,
    The words are all blurred,
    That damned fog in my head,
    The lead weighing down my limbs,
    The open sores of my soul,
    Out of which my strength runs,
    Forever gone?
    Let’s turn back the pages,
    I need to remember,
    But surely this is fiction,
    You can’t believe everything that you read,
    Who is the person in this story?
    What boundless energy, what resolve, what strength, what joy,
    Slim and fit, the smile, the eyes that sparkle,
    It can’t be me,
    The monster rules now,
    The past is soon forgotten,
    The mirror sneers at me,
    Fat, grumpy, sad, exhausted, mean, hopeless,
    Who would want that as a lover, a father, a brother, a son or a friend?
    Flicking forward to where the words continue to appear,
    They cannot be stopped,
    How many blank pages are there left,
    The thickness is elusive,
    Can this monster be beaten?
    Can I poison it with this poison?
    Three times a day, every other day, every day,
    If so, what then,
    Who is waiting at the other end?
    A shell or a man,
    I suppose it is up to me,
    Get up you Norseman,
    One foot in front of the other,
    The ending must be,
    They lived happily ever after,
    Valhalla will have to wait,
    I have a book to write!



    Guss doing well
    Guss Insomnia
    Guss exercise questions
    Guss Sarcoidosis Update
    Guss summary of MP
    Guss psoriasis
    Guss Sarcoidosis Psoriasis:3 years progress
    ___________________
    Guss: Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. Started MP: Oct 2003; Phase III since July 2004; BP 100/60. Ony mild herx at the moment! Wife also Dx with Sarc May 1995 - symptom free.

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     Posted: Mon Sep 11th, 2006 09:04
    GeorgeinRollaMO wrote: re Libido
     
    May 31st, 2005

    I wrote a few weeks ago...

    "Why is air like sex?  No big deal until you are not getting any."

    Well, this will be a Memorable Memorial Day for me, and DW!!!!!  :D:D:D:D:D:D:D:D:D:D:D:D:D:D:D

    Trevor has said that the 125D hormone affects all other hormones.  In April of two years ago, I did a 24-hour hormone panel that showed that my hormones were all out of kilter, and that my testesterone was sub-basement.  I knew it!!!  :X  I considered Viagra, but I really do not like such.  I thought that there must be an another answer than that.

    Well, it sure does appear that Trevor is correct about the 125D affecting all other hormones!!!!! for at least two years.:D

    Would you allow me to count this as another SUCCESS!?!? of the MP.  All indications are that it is the reason. :D

    Dark Vader   (aka, George, the Smiling One!) :D:D:D:D
    ____________________
    George: 125D = 57, 25D = 61 on 7/14/04. ACE = Normal. Benicar 9/1/04. Mino 10/5/04. Borreliosis, infected 3-31-00. New 125D = 66, 25D = 43 on 10/25/04.

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 09:08
    GeorgeinRollaMO wrote: Borreliosis does respond to the Marshall Protocol safely!!!

       
     June 17th 2005 George wrote: LeAnne,

    A long time ago, penicillin was discovered.  How it worked was not known fully.  Penicillin did not have a doubleblind-placebo-controlled study.  Penicilin did not have a peer-reviewed medical journal appraisal.

    But it worked!  It was used!  And mankind benefited immensely!   And is still benefiting!

    There are a fair number of hundreds of people who have used the MP ahead of you.  I am one that is still using it.  I did not fully understand every detail of how it worked... just a Readers' Digest version.

    I saw most of my symptoms as being the same as people before me that had success.  And I wondered why their trouble was being called, sarcoidosis.  I had never in all of my life, before reading the sarcinfo site had heard of sarcoidosis.  I had borreliosis because I knew I had borrelia bacteria in my body.  The overall logic sounded correct, or at least, good!  Even for my borreliosis.

    I was hurting!  I had tried almost everything else that sounded logical, and, it all failed, including two surgical operations on my spine that was "guaranteed" to resolve my pain, but did not in almost two years of waiting after the operations.  I only had my life to lose, and I was already losing it, in a very painful way.  I truly thought that I would be in a wheel chair within two years time, and worse, thereafter.  So, what the hell! I thought.  What have I really got to lose?  I am not going to be the first experiment, or, even the second.  There must have been two hundred ahead of me that had success.

    I gambled.  I am winning!  I am having small successes that will one day add up to be one big success!  Something the orthodox medical community did not... could not give me.

    You may never know all of the details of how it works.  I do not!  I doubt that Dr. Marshall knows ALL of the details.  Who can crawl into all of those microscopic spaces to see and validate exactly what is going on.  The LORD, no doubt!

    But the MP does work!  Well, I can vouch for it working for me, is what I know for a fact. In the six and a half months of doing mino, and then doing a Bowen RIBb test, my test dilution ratio went from 128 to 32.  I had done the long, strong and varied abx of the LLMD's protocol, and my Bowen test result stayed at the highest dilution ratio of 128.  The MP works!! for borrelia, at least.

    Just as penicillin was able to work without being explained how, without placebo-doubleblind-controlled studies.

    Try it!  You'll love it, somewhere along the route. :D You may also hate the Body Snatchers within you, along the route, also, because they will put up a good fight to stay in and control your body. :)  It is not an easy two-pills-twice-a-day-treatment! :X

    You will not be making a mistake!
     
    Borreliosis will, and does, respond to the Marshall Protocol...safely!!!  Provided that one does THE Marshall Protocol, and not something else, such as, even using the same meds, but in a different way.


             Dark Vader   (aka, George)
    ___________________ 
    George: 125D = 57, 25D = 61 on 7/14/04. ACE = Normal. Benicar 9/1/04. Mino 10/5/04. Borreliosis, infected 3-31-00. New 125D = 66, 25D = 43 on 10/25/04.

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 09:13
    Huey wrote:  CFS symptoms improving

    June 5 2005
    day 304 ben, day 298 mino, day 205 phase 2
    Report on cycle 22.  This was a shorter cycle, as was previous, which might explain why the herx set in both soon and strong. 

    The increase in herx symptoms were evident by day two, and peaked by day 4.  Days 4 and 5 were difficult…hard herxing fatigue, muscle weakness, more wobbly knee, poor bowels, cold/numb feet and fingers, flushed/burning skin, and a neural buzzing sensation on the back of the hands, which is new. 

    -Days 6 through 8 were out of the ordinary.  All the above symptoms became mild, and I found myself feeling somewhat hyper…I have never before felt hyper. I even sought out my neighbors for a friendly chat – something I generally try to avoid – and found myself doing most of the talking.

    -Additionally, I seemed to be developing endurance.  PWC's do not have endurance.  They start the day sick, exhausted, and sludge like, and go downhill from there.  But as I slowly muddled through my home chores, yard work, etc, hour after hour, I did not predictably weaken with the usual cfs post exertional crud...quite the opposite.  I maintained my stamina throughout the day.  If I became overly tired, I needed only a short break for my strength to rebound.  This is very significant.  With cfs, one never rebounds…one weakens and perhaps collapses. 

    The above terms (stamina, strength, rebound) should be taken with the most modest meaning  possible. 
    -Nonetheless, I can feel my body, ever so slowly, ever so very slowly, changing.  
    -The light sensitivity continues to lessen. 
    -The strange lung phlegm herx has become very mild. 
    -The malodorous skin dampness is rare. 
    -Muscle cramps have vanished, though wobbly knee continues to plague in an on again off again manner. 

    -The pots/nmh/dizzyness, which was cfs common pre-mp, and acute to the point of nearly blacking out during mp phase 1, has now become very both mild and rare.
    -The symptoms, from cycle to cycle, are now predictable, and clearly diminishing.
    ____________________
    Huey 1990--sudden onset CFS Jul 04, d test 25d-29 1,25d-34 Aug 6,04--Started phase 1 Nov 16,04--Started phase 2 Sep 28,05--Started phase 3

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 09:18
    catlady wrote: CFIDS Concentration improvements ....

    I had this type of concentration problem for the past few years before starting the MP. It was a factor in my becoming unable to work. Basically what you described about your friend sounds exactly what I experienced when in exacerbation periods of my CFIDS. ...............

    ...............   At any rate, on the MP, currently in my 6th month and in Phase 2 on the "alternate" combo, I find that my biggest improvements have been in my mental functioning. At the start of the MP I could only read for short periods of time and now I can read for hours most days, except maybe not when in a bad herx. And I have virtually no anxiety. I continue to have lots of fatigue, pain, and have to spend most of the time lying down. However, regaining my intellectual functioning has been one of my biggest goals and I already count that a great success. Friends have been commenting on my sharpness, as well:cool:

    I think also my problems were HPA-axis related, as did my doctor. Of course now we know the treatment!

    Best wishes,

    Catlady
    ________________
    Catlady: CFIDS 25 yrs, worsened 1992,diagnosed 2001; seizure disorder 1992, myofascial pain syndrome, migraines 11/04 25D 21, 12/04 1,25 D 48;5/05 25D 23 1,25D 54 Benicar 12/22/05,Mino 1/4/05, now at 100 mg. PHASE 2 5/05 Neurontin Tylenol Benadryl K-creme

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     Posted: Mon Sep 11th, 2006 09:24
    KFaucher wrote:  CFS: the MP does work! 6 months on the Marshall Protocol!!!!


    Jun 10th, 2005
    Phase 2 Report
    6 months on full Marshall Protocol!!!!!!!!!!!

    Wow! How time flies! Although this has been a rough 6 months, I have had many months that were worse. The 7 months prior to the MP were much worse.
    -Now that I am in phase 2 I get as many, or more, good days than bad ones. Even when I get a really nasty herx I know it won’t last, and that makes it much more bearable.
    -My light sensitivity has reduced greatly over the last 2 months. My energy is better.
    -Mind is clearer.


    The MP does work! I feel bad for the people that are having a difficult time, but I am cruising along as predicted. I am thinking that 2006 is going to be a very good year!

    Tight lines, Ken

    "Believe one who has proved it. Believe an expert
    ." Virgil, Aeneid
    Roman epic poet (70 BC - 19 BC)

    "Knowledge must come through action; you can have no test which is not fanciful, save by trial"
    Sophocles.
    , Trachiniae, Greek tragic dramatist (496 BC - 406 BC)
    "Little by little, one travels far."
    J.R.R. Tolkien

    "Life is either a daring adventure or nothing. Security does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than exposure."
    Helen Keller US blind & deaf educator (1880 – 1968)

    "Those are my principles, and if you don't like them... well, I have others."
    Groucho Marx 


    see also
    Ken Faucher: Phase 3 update - 2 year progress
    KFaucher/ Ken: CFS: camping trip
    KFaucher/ Ken:  CFS 20 years: how much better I can get.
    KFaucher: CFS: CWD and back pain
    ____________________
    Ken:  "good days & bad days & going half mad days" J.B.
    CFS 20 years 25D=30 1,25D=57 8/2/04; 25D=19 1,25D=48 12/2/04; Avoid Sun 9/12/04, NoIR 10/1/04; Benicar 12/2/04, phase 1 12/10/04, phase 2 4/5/05 Phase 3 Sept 06

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     Posted: Mon Sep 11th, 2006 09:32
    Big John wrote My MP Experience, improvements listed.


    Jun 14th, 2005

    Back months ago when I was first researching the MP I was quite skeptical. Fact is if you read some of my early posts you can tell that I was quite skeptical. After a year a lot has changed for me. Some good some bad. When I first started the NP I was in a hurry to get better.. I am sure we all feel this way. I was not however prepared for the trop that I was about to take.

    I will not fool you or lead you to believe that it was a road that was without much turmoil. None the less I was determined to follow through. I have been on the MP (more or less) for almost a year... My how time flies when you are having fun! Or not!

    Like many people out there I had tried many different "cures". All left me with little or no change in my condition.. Fact is, no doctor really could diagnose with certainty what I was afflicted with. I was on 2 very heavy duty pain relievers just to deal with the pain. I was at one time on 14 different medications and was so tired I could not get up to pee. Many of us have been there, some may be there now..

    The protocol that you are researching is not without its own tests.. Attested by many, this path will lead you to get to know yourself very clearly. It will question the very strength within you and will lead you to power that you did not know existed. You will have days that you will not be able to get out of bed, you will have days that you may even give up. Those are the days when this web site becomes most important.

    You see, that guy who was on all those meds and addictive pain killers is now taking Tylenol, nothing more.. The pain still exists and I am far from cured, however there does appear to be a pot of health at the end of my rainbow, and at the very least a quality of life that is much better than when I entered the program. I don't post much anymore because my eyesight is still challenged and I have strayed from the protocol and have had cortisone injections.. I could not read the big "E" on the chart.

    Although I am not quite sure what fate awaits me and I know the return of my sight may only be temporary I live from day to day without much of the pain and discomfort that plagued me for years.

    Many of my issues have alleviated.
    -Prostate discomfort has healed,
    -neck and shoulder pain is gone.
    -Muscle cramping has almost disappeared.
    -pain in my jaw has left.
    -I have not had a gout attack in a year.
    -Chronic sinus infections are practically no existent.
    -Wrist and elbow pain is also dissipated.
    -My mind has times of great focus. (other times I can hardly talk.)
    -Pain in my foot diagnosed as chronic inflamation and arthritic (I have had it for 5 years.) has healed.
    -My back pain in my lower lumbar diagnosed as "degenerative" has stopped hurting.
    -But above all my wife says I am again argumentative......

    Good health! :)
    ____________________
    John: Reiters Syndrome, Reactive arthritis, chronic Retina inflamation, inflamation hips, knees, joints, brain fog. Fatigue,, Scooter Jockey. Benicar 9/23/04. Mdx: Lexapro 10mg, probiotic, fiber, mino 100mg q48, Phase2 12/05. 5/06 60% symptom resolution. Phase3

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 09:36
    Ms. Dale : Ms Dale's moving testimony on the effectiveness of the MP can be seen on our Chicago DVDs. 

    Jun 15th, 2005
    Meg wrote:
    In an email to me, Ms. Dale who has been under considerable stress recently due to her father's sudden poor health related this message:

    "I think back to the condition I was in just a couple years ago and truly there is no way I would be handling and doing what I have accomplished in this current situation. When I read this email regarding the person who posted:
    It would be nice if the board could show us several examples of people that have gotten out of what I percieve to be the most detrimental symptoms (anxiety, brain fog and fatigue).

    Boy - could I give them some FACTS.
    Anxiety? What I have accomplished this past week is truly proof - that without the MP I would have been mentally crippled with the amount of anxiety that has been experienced - and I was not.
    Brain fog? Dealing with Neuro Surgeons - Hospice Consultants - understanding the medical mountain of information thrown at us - and etc - and then being able to explain and make sense to my mom in understanding exactly what they are saying and doing - trust me my brain was working overtime. Being her "rock" - what my mom has used to describe what I have been for her during this entire situation - we all know that pre MP there is No Way that I would have been the woman I am now in helping her.
    Fatigue? Before the MP I would never have been able to be still standing after the days I have put in between the ER - Neuro Surgery Unit - ICU - etc etc

    So does the MP work? - you bet your boots."

    ===============

    July 15th 2005 from Ms Dale wrote:

    re FAQ Will the MP treat paresthesia and neuropathy?

    "The proof is in the pudding that I have had recovery... of these very conditions that gripped me (1993 )

    In whole body...  I would guess-ti-mate - I am at at least 85 % improvement since starting the MP in Nov 2002.
    And I plan to see 100% - as it just keeps getting better and better.

    I remember well the LOOK on my Neuros face as  we both witnessed what
    had improved or resolved ( 2005 ) - after 12 years!!!  He was shocked."
    ___________________

    Ms Dale: Sarc: MP Nov 2002

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     Posted: Mon Sep 11th, 2006 09:41
    Guss Wilkinson wrotere Exercise Questions. Martial Artists.
     

    Hi Thai & Xtian1

    These are very good questions and very good answers. My wife, Helena, and I are both martial artists. Helena has trained karate for just over 20-years, and I for just over 30-years – and we both have run clubs since 1987. The martial arts have been our hobby, our passion and our identity – a significant proportion of our social life has based around our clubs and our students.

    Helena then came down with Sarcoidosis – and it seemed to come all of a sudden after a particularly heavy cold. There was no question of her training – she couldn’t get through the day…she couldn’t eat, she couldn’t think and she definitely couldn’t move.

    I was there supporting her, but it is obvious to me now that I had no idea of what she was really going through. At first I thought…come on, pull yourself together – you’re a martial artist for goodness sake!! Then after a few months, she had gone down to 43 Kg in weight, I began to think that she was dying.

    I moved us out of the flat (at the time I was convinced that she was reacting to something in the flat where we lived) and after a while, her disease started to turn – she started to get better. At first, she just turned up to training to watch and as time went on, she started to join in the lighter stuff. I remember each time that she did anything; she would have to lie down at the side of the hall to recover. This was all back in 1995 and it took her 6-years to feel fit again.

    Then in 2002, I got sick – it sounds sudden, but it wasn’t. I had been going through a steady decline from elite fitness for a number of years without noticing. At first I thought I was getting old…then I thought that I was drinking too much to be an athlete (I like my glass of wine with my evening meals). I continued to decline, and I started sitting out the warm-ups (something I had never done in my life)…or I would cheat when no one was looking…or I would correct students as they warmed up – anything to get out of it – I just didn’t seem to have enough breath.

    Then one day, while sparring, I simply ran out of oxygen, had to stop and threw up. My decline continued and eventually I was diagnosed with Sarc. At first, all I felt was relief – I wasn’t getting old, I wasn’t drinking too much, I wasn’t depressed, I wasn’t letting myself go…there actually was an explanation – I was seriously ill.

    Prednisone helped…briefly…I would bounce around feeling great for a couple of weeks and then I would sink into a very rapid decline as the treatment failed – this happened twice.

    I never stopped training with the MP (which seriously depends on your definition of training). The herx induced cough was wicked – very productive. Any exercise would induce a coughing attack that would end up with me throwing up. It happened every time.

    After the coughing, my lungs would clear somewhat and I would continue – but then my lungs wouldn’t work properly – I would not get sufficient oxygen and I would turn blue – and sometimes to the extent that it would scare people.

    It is not a case of being strong and pushing yourself through it – you have to listen to your body and stop.

    For me, the herx varied (completely unpredictably) in intensity…sometimes I couldn’t walk more than 5-steps without stopping. Sometimes, I felt reasonable and could demonstrate fairly well, before having to stop. Sometimes I was just so tired that going to the club was absolutely the last thing that I wanted to do – but each time my wife booted me out of the sofa and dragged me moaning and swearing to the club – people were waiting for me…I had to go.

    I became very good at conserving my energy and learning to predict (with a couple of minutes notice) how my body would react – and remove myself from the training hall so that I could die in peace. We had had a heart to heart with our other instructors and students about my condition from the very beginning – they were very understanding and very supportive…but, boy was I close to throwing in the towel…many times!!

    Now after 20-months on the MP, I still cough – sometimes (I don’t throw up any more). I still run out of oxygen and turn blue, but I can do far more before it happens. I have far more energy and I don’t moan and swear at Helena before training nearly as much. I am still a long way from being what I would call fit, but I will be able to get there – my wife is my role model…if she can do it, I can.

    Now comes the interesting bits…I realised from very early on that I would need something not constrained by my physical shortcomings to focus on – I focused on my Academic development (working towards my Masters)…which turns out to be one of the very hardest things I have done. But it was/is rewarding – just as much, if not more than my physical achievements. This helped me not to wallow in self-pity as I did when I was on prednisone – it also helped to make time go quickly. Time going quickly was essential for me to notice my improvements on the MP and was one of the factors that helped me to stick with it.

    Also, my illness has made me far more understanding and tolerant of other people’s baggage – I am far less arrogant and have far less of an “if you are tough you can push through it” attitude.

    I have also learned that I will never be as fanatical about anything to the degree that I was fanatical about martial arts. Fanaticism steels time away from other experiences – my social life is also a lot richer as we are no longer locked in to spending time with like minded people. I no longer care if I am not shaped liked a Greek statue – physical attributes are just temporary gifts – intellect is somewhat longer lasting. Our identities are no longer solely reliant on our physical achievements.

    In a way, I am grateful to my illness – it seems to have lifted a number of self imposed burdens. Having said that, I’ll be pleased when its gone!!!!!!!!!!!!!!!!!!!!!!

    Cheers

    Guss
    __________________

    Guss: Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. Started MP: Oct 2003; Phase III since July 2004; BP 100/60. Ony mild herx at the moment! Wife also Dx with Sarc

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     Posted: Mon Sep 11th, 2006 09:46
    scooker48 wrote: Sarcoidosis: CT Scan of chest results: improvement.

    Jun 30th, 2005

    Phase 2 Cycle 1 Day 10

    I had a CT Scan of my chest done today and may I share the results with everyone.  Overall, the studies said there is improvement.

    Findings:  Previously noted scattered ill-defined bilaterial nodular opacities and interstitial pulmonary parenchymal prominenece, primarily in the parahilar distribution, has definitely improved since Febrary 14, 2005.  Currently, there are still numerous vague tiny bileral nodules, but these are much less conspicuous than on the prior study.  A fairly well-defined 9 mm nodule in the lateral portion of the right lower lobe persists without change.  Other smaller well defined right upper lobe nodules also remain unchanged.  No new nodular opacities are seen.  No mass detected.  No pathologically enlarged mediastinal, hilar, or axillary lymph nodes are appreciated.  The pleural (can't read word on fax) are clear.  Cardiovascular structures are stable.  Below the diaphragm, there is no adrenal mass.  Scattered tiny low density lesions throughout the spleen associated with very mild splenomegaly appear unchanged.

    Impression:  Overall improvement with reduction in overall conspicuity of bilateral vague pulmonary nodular opacities.  These findings would be consistent with improved sarcoid.  Scattered tiny low density splenic lensions persist without change.

    The reader should note that I started with Benicar on 2/17 and added mino 2/26. 4 months MP.

    Thank you all very much for your patience to help me get better

    Sherry
    ______________________
    Sherry: Dx 12/04; CT scan Sarcoid liver spleen & lungs. Started MP Benicar q8 hrs 2/17/05&Mino 2/26/05. Benicar q6hrs 3/14/05. 2/2/05: Vit D at 25 & Vit D 1,25 at 62 . 3/30/05 Vit D at 28 & VitD125 48. 4/30/05 Vit D 26. Phase 2: 6/20/05 | Phase 3.

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     Posted: Mon Sep 11th, 2006 09:50
    Lonestartick wrote: neuro-borreliosis (chronic, late-stage Lyme disease) turned the corner..

    Jul 4th, 2005

    Hi All,
    It's almost my MP birthday, or is that re-birthday?

    I sense that I have finally turned the corner. I started the MP almost a year ago, at the end of July, and what a year this has been! Until quite recently, I wasn’t confident I was going to be successful with this protocol. Now, I’m counting on it and I'm planning for a healthy, happy future.

    I just wish that I had read the quote of Trevor’s regarding taking phase 2 really slowly prior to starting the MP, especially prior to starting phase 2. I would have liked to understand this before embarking upon this journey, before I hit the thick of my brain fog of my neuro/depression Herxing. It might have saved me some misery had I known to go much more slowly. I’m so grateful to those who have gone ahead of me, because I can’t imagine overcoming the many doubts they must have if I had been among that first wave.

    At one point I thought that I would make faster progress if I dug in and pushed as hard as I could personally tolerate it. That worked up to a point, but I dug myself in and almost didn’t get back out of it. Slowing down seems to have sped up the healing process considerably, almost unbelievable so. I’m now at the point where I feel that nothing will derail me from my successful MP journey. That’s hard to believe when I was facing serious doubts just a few months ago due to a Herx-related depression.

    I’m so glad to have made it to this point. I think that I am actually going to plan myself an MP birthday and celebrate because getting through this last year was no small task. Of course, as the fates would have it, my MP birthday coincides exactly with my husband’s birthday, which is also the same day we got engaged. This was quite by accident, but fortuitous, I think.

    I sense that in the past at various points in my recovery, I have still never known what recovery really was. If I had to guess then where I was on a recovery scale, I would have guessed myself to be much higher on the recovery scale than I actually was simply because I just couldn’t imagine what real health could feel like.

    I calculated the effects of reaching my late 30s and what I thought was a natural aging process. I became so ill so early in my life that I had nothing to gauge real health by. Naturally, I was confused whenever I enjoyed any significant improvement. Given any small improvements at all, I thought then that I had achieved health.

    It scares me to think that I once thought my improvement on Rocephin was close to real health. I did become considerably more energetic and I recovered some motor skills and neuro function that kept me from an MS diagnosis, but I was so sick when I began Rocephin that any improvement at all was life changing. After Rocephin, I actually expected to live my life with some residual joint pain and swelling.

    My sore throat with red crescents and swollen glands had never ever let up since as far back as I can remember – over 30 years. Without trying to intentionally, I discounted that the fact that my throat and swollen glands always brought me to a complete stop every single time I exceeded my narrow limits and overdid activities in any way.

    I think I had come to expect that I would have to ignore certain symptoms and live with lower expectations of what I could physically do. That was until my symptoms finally resolved entirely. Even the sore throat and glands went away on the MP. I never ever really expected that this would go away because it was ever present, even while on multiple high dose ABX cocktails. If the nuclear assault couldn’t get it, why should a low dose protocol take care of it completely?

    After IV Rocephin, I figured that I was 80-90% recovered and that the rest would come in time. Looking back now, I see that I was relapsing within just a few weeks of being off Rocephin. The orals I transitioned to in order to mop up the rest of Lyme and co-infections merely slowed my gradual descent downward.
    At my highest point on IV Rocephin, it was a real struggle to make it out of the house by eleven or twelve in the morning. I made it out two days a week at 9am, but that was a real task, complete with 2 hours of horizontal wake-up time just so I could ease into the day. I was grateful for that level of improvement, because it was a far cry from being bed bound or home bound. 


    These days I can easily get myself up and out of the house in the EARLY mornings without a struggle, and without needing incredible will power to do it. I wake up and I’m good to go. I almost never need a lengthy time to ease myself into the day and it’s such an easy transition to go from being asleep to being awake.

    This is a true miracle for me because I have struggled to become a morning person for ever and now it’s just happening all on it’s own. I am able to get out of bed and moving without getting side-tracked and lost in fog and fatigue. My 85-90% victory in the past is now looking as if it was only a 55% at best. What a difference a year has made on this protocol!!!

    Now I am feeling so much better than I ever have, but I sense that I am still healing. I don’t know where this journey will take me or how long it’s going to take, but I’m sure I’m on the right course and I’m going to give this protocol all the time in the world to do the job. I have enjoyed so many positive changes that I’ve never experienced on any other treatment, so I’m sure it’s going to take me all the way. I just don’t know where all the way will be because I sense that I can’t imagine that level of real health and energy because I have never experienced it before. I trust that this time I’m going to know the difference between minor improvements versus real health. 

    I guess the MP is like climbing a large mountain. It is a real struggle filled with doubt, oxygen deprivation and confusion. You reach a summit and you think you’re there, then you have to descend before the next ascent. The top of this mountain is above the cloud line so I don’t know really how far away or how near it is. I just know it’s worth climbing all the way. Although I can’t quite see it see the top, my guess is that the view is heavenly.

    I am really looking forward to attaining a level of health that I’ve never seen before, as far back as I can remember. It sense it’s not too far away. What amazes me is that every time I think I’m almost there, things change in little ways that tell me it’s only going to get better.

    It’s so strange that for the most part I fall into bed tired at night, but not exhausted. It’s strange not to rely on sleep meds or even to need natural remedies. My head hits the pillow and I slip easily into sleep. It’s strange to wake up refreshed and rested with hands and arms that function and aren’t numb and asleep for the first 3 hours of the day. My hands used to take forever to wake up, if they did wake up at all. Now I can open jars and forage for food as soon as I pop out of bed. It’s alien to be able to pop out of bed and actually be awake and able to function. 

    I can easily get out of the house and go meet someone for breakfast at 6 or 7am if I want to. I did that several times this last month. I haven’t been able to do that in a million years so it’s strange to be able to plan these fun things.

    It is stranger still to seldom ever need a nap, but to finally be able to feel completely rested on the occasions that I do indulge in one. It’s odd to walk with joints that don’t pop, swell and ache. It’s phenomenal to be able to sit on someone’s hard floor and visit without it flaring my joint pain. (I always felt guilty needing to be seated in a chair when others wondered why I was so rude for sitting.) It’s strange to be able to run a little bit and not get winded.

    Last week I spent 65 minutes walking at a fast pace on the treadmill and I never tired. I actually felt energized by the exertion. It is nice to begin to ease through days without feeling as if I’m pushing no matter how much I set out to do. I feel as if I’m tapped into a slow, steady source of energy and I just don’t tire the way I used to. When I do tire, I recover with one or two nights’ sleep.

    It’s really nice to feel a bit friskier, especially in this summer heat. The downside is that I just don’t want to think about ill health anymore. I want to walk. I want to run. I want to drink in life. I want to tackle things that I haven’t had the focus or energy to accomplish. I want to do anything and everything that is in no way shape or form related to this disease.

    I used to study anything and everything related to Lyme disease because I sensed it was my only way of finding a path out of despair and disease. This was almost a second job for me. Now I find myself thinking that stuff is interesting, but on some level I just don’t care anymore because I sense it’s just not that important.

    The MP seems to be making sure that my body is going to be able to handle this and all it’s co infections without my needing to know how or why. That is a freedom that I cannot describe.

    I sense that this is not too good to be true, but I don’t yet have the hard data to share with others, so I feel that my time is best spent making up for lost time and just enjoying life. It’s good just to enjoy life again. Perhaps enjoying life is my best and highest purpose right now.

    Maybe as time goes by I will enter a few 5 and 10Ks wearing an “MP Beats Bb” or “MP for Lyme” shirt in lime green. The sensitivity to light will be a bigger deterring factor for me than the distance. Maybe no one else will notice or know what it means, but I’ll know and it will be a celebration of my health, as well as a reminder that it was worth going through the doubts and the darkness to get to the other side.

    I don’t intend to preach to patients or to try and convert doubters and disbelievers. I don’t know that this answer will be right for everyone, but I have no doubts that this is a real answer for me and I’m going to enjoy my new life with every ounce of my being. Right now, that is more than enough.

    This was so long long, but this month is my one year anniversary and I cannot believe how good things look from this point forward. I am glad I set a realistic time frame for my own personal evaluation of this protocol. Actually, I should state that more clearly: I'm glad that I had the time frame in which to do this because it is not a quick fix. 

    I am also very grateful that I have had concerned family members around me who were insistent in pointing out that I was indeed making progress, even when I was lost in the depression and doubts. The journal helped, but their reminders and testimonials helped even more. 

    I am also really glad that I had sworn to myself that I would give the MP a full 18 months before I quit. I had so many doubts along the way and there were times when I was really tempted to give up before I started getting to the good stuff.

    At this point, it seems that I have definitely made some real progress. For instance, our air conditioner died in our 98-100F (36 C) degree weather this holiday weekend. Gotta love our Texas heat! The thought of our high daytime temperatures got me out of bed and on top of the chores before 6am, so I won’t have to struggle with them when it’s really hot.

    So far, I’m holding up much better than I expected I would. I’m not sure I could have done this 6 months ago, and I know that I couldn’t have done it during or even after my highest point on Rocephin.

    Back then I still had the toxic, stinging, burning sweat. I kid you not, when it didn’t physically hurt to sweat, it made for a miserable time of pricklies and stinging afterwards. Now I get on the treadmill or do the yard, and my sweat actually feels healthy. My thermo-regulating abilities are much improved now, and temperature extremes don’t seem to wipe me out.

    Ah, if only I could go out in the sun for activities... I guess that’s worth waiting for. I think it will all come in time, maybe on my next MP birthday or the one after that. Of course, I will probably always continue to cover up to protect myself.

    LST

    Many thanks and happy 4th to all!
    _________________________
    LST: F age 40 Began MP 7-26-04 Meds: Thyroid, 40mg Benicar qid, minocin qod + phase-2 med Dx: neuro-borreliosis (chronic, late-stage Lyme disease) confirmed by several labs, with co-infections (Bartonella, mycoplasma, Babesia); 6 yrs prior abx (17mo IV)

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 09:56
    Ames wrote: CFS/FMS positive advances
     
    Jul 11th, 2005
    I'll mention a few of the positive advances I feel I have made so far on the MP.

    1. I think my hormones have done some serious re-balancing. I stopped my hormone and thyroid supplements completely. Nevertheless, last month I got my period naturally for the first time in 3 years.

    2. My sleep meds continue to KNOCK ME OUT, although I have been able to cut back as well and stop one completely. Maybe my body is actually remembering some slight idea of what it is like to go to sleep naturally.

    3. My food sensitivities and digestion problems are GONE, as far as I can tell. Before I couldn't touch dairy. Now I eat yogurt, cheese, cream cheese in large amounts. It's something I couldn't even imagine before.

    4. When I started the MP I was on 4 strong antifungal drugs. I was really nervous to stop them, but I did. I have absolutely no signs of Candida returning, which to me comes close to a small miracle.

    5. When I'm not herxing I can do a small amount of exercise, using muscles, and actually recover in what feels like a normal amount of time rather than 3 weeks. I do about a 30 min yoga routine on good days. The next day, no reprecussions-this NEVER happened in the past.

    6. My insane craving for carbohydrates and sweets are still practically gone from the moment I started taking Benicar until now. Very nice.

    7. My light sensitivity has improved tremendously. I would almost go as far to say that I am fine in all indoor light. When I started, I couldn't stand the small amount of light that came in the top of my glasses from one 30 watt bulb. Also, even normal lighting gave me hyper D symptoms. Now I've been out a few times with no hyper D symptoms.

    Amy
    see more
    Ames: spontaneity and better endurance - yay!
    AMES re MP A CFS patient's experience with the Marshall Protocol
    Ames: Listing improvements: I am thrilled
    _____________
    Amy: 03/05: 1,25D-32 25D-40 (therapeutic probe) Benicar 04/29/05: 20mg q3hrs, Mino: 100mg q48hrs, Phase 2: 06/05/05. Age 23. CFS/FMS, osteopenia Severe symptoms started around 2003. Klonepin, Gabitril, Neurontin for sleep, probiotics

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 10:02
    Guss Wilkinson wrote: re Insomnia!

     
    Jul 19th, 2005
    I thought that I would put finger to keyboard and write about, what I consider to be, absolutely and by far the nastiest symptom, for me, of this horrible and heinous disease.

    Insomnia!

    For as long as I can remember, it has always taken me a while to fall asleep. My parents attributed it to a very active imagination. My brain seemed to have needed a while to process events of the day, upcoming events and even just to work through spontaneous thoughts as they occurred before it finally decided to switch off into the land of nod. Even as a kid, when sharing a room with my brother, I marvelled at how he fell asleep as soon as his head hit the pillow.

    I must have had the bugs even then, as I had psoriasis – even if it was fairly mild as a kid.

    I have always had a pretty full-on life – lots of energy, lots of enthusiasm and lots of fun. I always took on responsibility; was always the person to arrange to socialise and I was never ever bored.

    Nothing changed in that respect as I got older. I married at the age of 21; I continued to learn and educate and ended up with good jobs (an Optometrist back then) and I performed always to the best of my ability.

    Then one Sunday evening, after a team building weekend with my work, back in 1989 (I was 26 years old then) – I went to bed. I was exhausted.

    But my brain went through its normal process of contemplating things as usual – and it didn’t stop. I started to get a little concerned by about 4:00 AM as I knew I had a full day at work the next day. And then the alarm clock went off and I knew that I had not had a wink of sleep. I felt awful, but I shrugged it off as a strange occurrence; showered and got through a day of work.

    On Monday evening, I told my wife that I was going to have an early night as I hadn’t slept. And, hey, guess what…same again. Alarm clock went, up, showered and off to work – decidedly frayed around the edges.

    That night, I thought…right!! Time to share a bottle of wine with Helena and then I’ll have no problem. I went to bed, more than exhausted, but relaxed from the wine. But my damned brain wouldn’t rest. Alarm clock went – not a wink of sleep under my belt; had a shower and off to work, basically on autopilot.

    It was Wednesday evening…this time, I was going to tackle it with Gin – and I did it with style. I went to bed and the bed span! Did I get to sleep – the hell I did! I had this horrible buzzing sensation in my head all the next and I found it very hard to focus on anything at work.

    Next night, no booze – relaxation techniques (I was as tense as piano wire). No good – I looked at my wife snoring next to me and wondered if something was seriously wrong with me – I was feeling very desperate – had I gone mental? I took a couple of pain killers for the buzzing in my head – but really it was in the hope that they would somehow knock me out. Nope! The alarm clock went and I smashed it with a right hook that sent it crashing against the wall, rendering it back into its atomic state. Helena was a bit startled and suggested that I take a day off and go to the doctor.

    The doctor told me that I must have gotten myself out of rhythm and prescribed some sleeping pills. I was desperate and asked him if he was sure that they would work. He was and assured me that what I was going through was very common…but I asked him “what if they don’t work?” He said, “Take another.” What if they still don’t work? “Take a third!” He must have thought I was a fruitcake!!

    My appointment was in the morning and I promised myself that I wouldn’t take the pills until it was time for bed. I wanted to get back into a normal rhythm.

    That evening, at 7:00 PM I took a pill and went to bed. I waited 20-minutes and nothing happened. My head was still buzzing. I took a second pill and waited another 15-minutes. Nothing happened and I was getting very very scared – I just couldn’t take another sleepless night. I took a third pill and waited 5-minutes – nothing. I got up and joined my wife in the kitchen. She was eating cheese and biscuits and I told her with tears streaming down my face that the pills were useless.

    She told me to sit down and have some cheese and biscuits with her – she made one for me and I suddenly fell asleep face down into the garlic cheese. She hooked her arms under my armpits and dragged me off to bed – I slept for 18-hours.

    From that night onwards, it was very rare that I got a full night’s uninterrupted sleep. I actually started to really fear my bed and bed-time as I never knew how it would turn out. On a bad night, I would not get a wink but mostly I would seem to fall asleep between one and four hours before I was due to get up again. If I fell asleep early, I would usually wake up again a couple of hours later. If the phone ever rang once I had fallen asleep; that was it – I knew that I would be awake all night.

    The strange thing is that I felt that I would never have any problem falling asleep at any other time but bed-time. Falling asleep on the sofa during a film was not a problem – but I would always wake up. I could even power nap at lunchtimes! The doctors all thought it was psychological – maybe it was.

    It was a very special kind of torture lying there, clear awake, knowing that I had a full packed day the next day – one that would require my full concentration. I couldn’t let people down – not at work, and not at any of my other pass-time activities.

    But I learned to cope – I learned to function well on the four to five hours of sleep that I managed to scrape together. If I couldn’t fall asleep within a couple of hours, I would get up and do some study until I started to nod off over my keyboard and then drag myself off to bed – usually successfully. This was my strategy for many years and I managed to get myself a second degree, a post graduate diploma and a master’s out of it, studying part-time. I would avoid all sleep medication but would take 5mg of Valium if I had something extra important I had to do the next day.

    This was my reality until I started the MP in 2003. It was then that everything changed. All of a sudden, I could fall asleep immediately after going to bed and it would be a full uninterrupted eight or nine hours sleep – every time. I truly felt like a new person, and it was blissful! Oh, sure, I would have the odd herxy interruptions but nothing major. At first I didn’t trust it – it was too good to be true – I was sure the insomnia would return. But it has now been 20-months of good regular sleep and I believe that it is for keeps.

    I know that everybody reacts differently to MP, but this is how I have reacted and I wonder now how I ever coped. I get tired these days when I don’t get my 8-hours.

    Give me back my coughing; give me back my breathlessness; give me back my memory problems; even give me back my kidney stones - anything rather than letting my Insomnia return. Thank you MP!" <<< .......

    ADD PS: 29th July 05:

    I read a really good article about insomnia written in Swedish. It likened falling asleep to catching a train – a train that takes you to the land of sleep…the sleep train.

    For normal people, the train stops at the station and waits for the passenger to board it – for insomniacs, the train arrives and leaves so fast, that if you are not there at exactly the right time, and if you are not fast enough to board it – you miss it. You have to hang around and wait for the next one – you never know when it will arrive, and sometimes it just doesn’t come. This is why, they say, that establishing a routine that you strictly adhere to before bed (your journey to the station) is very important.

    My only reservation to this analogy is that, in my case, the train didn’t always stick to the time-table – and, very often, even if I did catch the train, the ride would only last a couple of hours. I did like the analogy though.<<

    Guss  My MP experience
    Guss doing well
    Guss exercise questions
    Guss Sarcoidosis Update
    Guss summary of MP
    Guss psoriasis
    Guss Sarcoidosis Psoriasis:3 years progress
    __________________

    GUSS: Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. Started MP: Oct 2003; Phase III since July 2004; BP 100/60. Ony mild herx at the moment! Wife also Dx with Sarc May 1995 - symptom free.
    __________________

    Shamutooth replied:

    Guss, kind of scary how you describe your insomnia, because I can relate to it so well. I have spent countless nights staring at the clock only to fall asleep at 4 or 5 and have to wake at 6. It is a hellish nightmare to have to live this way.Anything even slightly important the next day was enough to to set my mind racing in circles and guaranty a sleepless night.

    MP has helped me dramatically also. I still get the occasional sleepless night, but it is such a blessing to be able to fall asleep without worried thoughts bouncing around in my head; and to get deep, deep restful sleep.I remember having discussions with my wife about how, since my late teen years,I would get about 1 night per year of deep restful sleep.Now I get them regularly.

    I own a home building business that has really prospered in this real eatate boom, and it is just mind boggling that I have been able to run it successfully being sick and sleep deprived for nearly 2 decades.It is much easier to build a house these last few months, not to mention the mental focus I can give to some of my other passions;trading stocks and futures markets, and (most importantly) my wife and children.:D Sam

    see
    previous update
    Sam MCS Insomnia
    __________________
    SAM: MCS CFS IBS,insomnia,anxiety,depression,started Doxy July'04, MP Sept. 04; Benicar 40mg 3/day; Phase 2 started 2/2/05
    _____________________________________

    June 7th 2005 Dr Marshall wrote:

    Healing is subtle, and not something which is easy for us to explain.

    It involves endurance, strength, and quality of rest/sleep. It is profound and unexpected change :)

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 10:45
    Tobi wrote: LISTEN TO THIS! echocardiogram shows no abnormality whatever! I want to let flow a little of my complicated feelings about years of illness and mixed reactions about fabulous outcomes I've had this week.

    Those of you who have been reading my posts will know that I have had some tests done, the last of which being today.

    Now I will report exactly as things occurred, so excuse me if I am longwinded.

    On Friday I had an echocardiogram.  Fridays test shows no abnormality whatever - this was rechecked over a number of minutes. The radiographer said "It is most unusual for things to move in this direction, it usually deteriorates"

    Tobi

    and ....

    I want to let flow a little of my complicated feelings about years of illness and mixed reactions about fabulous outcomes I've had this week.  I am astounded how  a human being (me) is able to survive such a long, discouraging, helpless existence. I don't claim the monopoly - we all know this - I've lost my friends - partly by their volition and largely by mine. Friendship needs energy and the ability to enter into conversation about real-life issues, which now count only as trivia. I think how my friends must feel abandoned by me.  I truly don't care where they went to dinner, where they picnicked last week, or what dress they're having made for their son's wedding. I want to care, I just can't find it within me. 

    I feel diminished and robbed of much needed energy when I'm told - "you really need to find a good neurologist, and stop messing around - you know this is probably MS".
    I have decided from today, that no energy goes into defending my treatment. No more energy goes into describing my symptoms or treatment. I am going to draw in. Very serious business ahead that is not  the material of speculation, advice, comment.

    I don't have any energy to spare. No more "too much information" .  My husband of 35 years is totally with me in ways I always knew but that have stunned me this week. Such kindess, gentleness, practical help and "I'm with you". No words. I'm sure he didn't anticipate this.

    We think we can "pass as normal". I'm done with that. I'm going to do all and everything I have to do to get well.

    THank you my friends for going along with me and listening to news and rejoicing with me - news that irritates and annoys most.  Let me learn a good lesson from this. 

    Tobi
    ______________________
    TOBI: CFS,Rickettsia Conoori-,HHV6,Ureaplasma(all 3 culture,PCR) 25D 16.4ng/ml,1.25D 26pg/ml.Ratio 1,3 Blood probably NOT frozen Benicar 9/18/04 Mino 100mg 10/18/04 Phase 2 01/26/05

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 10:50
    R.Bartley:  Improving health on the Marshall Protocol. The corporate health plan administrators alone, should be beating a path to Dr. Marshall's doorstep, asking how best to make it a part of their corporate benefit plans...

    here: 
    Jul 23rd, 2005
    I combined the recommended escalation letter (re medco) with my own testimony and forwarded it to my company's plan administrator.  If nothing else, a few more people may become aware of the efficacy of the MP...dollar for dollar, the MP is a bargain!  What I spend on on the RX's and blood tests on the MP is a pittance compared to all the bizarre medical tests, cat scans, and pain masking drugs I've received in the past.  I think of the thousands of people worldwide who aren't able to realize their full potential, due to their TH1 disease.  The corporate health plan administrators alone, should be beating a path to Dr. Marshall's doorstep, asking how best to make it a part of their corporate benefit plans...I can see it now, listed right above Weight Watchers! :cool:

    After suffering from a variety of undiagnosed chronic inflammatory symptoms, chronic fatigue, and depression for years, I was formally diagnosed with sarcoidosis in May 2003 through the biopsy of an enlarged lymphnode in my chest. The long term prognosis for sarcoidosis patients is grim, and my overall health and well being continued to decline. Historically, only the chronic symptoms of sarcoidosis are treated to provide some relief to the patient. I sought out these treatments through my pulmonologist and family physician, but realized after being scheduled for one more unnecessary CT, and the offer of narcotic pain relievers (both of which I declined), that I was going to have to take control of my health care if I was going to survive this ordeal.

    In December 2004, while researching additional treatment options for sarcoidosis, my wife happened upon information regarding the Marshall Protocol. We researched the details and case histories of this protocol for a month, and in January 2005 I made the recommended life-style changes for diet and elimination of sun exposure. Within 2 months, I experienced symptomatic relief of some of my chronic pain. I then sought out a local physician for consultation, who had been treating other sarcoidosis patients with the Marshall Protocol with excellent results. Under my physician's care, I could then begin following the full protocol required for the cure.

    Even during the sometimes difficult healing process, my wife continues to remind me that she hasn't seen me this well in years, and she is correct. I've never been the type of employee to take a 'sick day' when I could be at work, even if less productive. I now know and feel like I will be an effective and high-performing employee for as long as I choose to be. I am nearing the completion of Phase 1 of the Marshall Protocol, and will be advancing on to Phase 2, with the introduction of additional antibiotics. Benicar is a critical pharmaceutical component of the Marshall Protocol, and unfortunately there are no formulary substitutes. Until there are, I will need to continue to purchase Benicar until my disease is cured, once and for all.


    ___________________
    Rick: Sarc/Diag'03/Lymphnds,joints,muscle inflam,tinnitus,varicose veins,edema,neck pain,fatigue,GERD,deprssn/ Meds:Nexium 40MG,Benicar 40MG 8hrs 05/25, 07/08 mino. 75mg/No Vit.D diet/NoIRs/6/22/05 D.25=28, D1,25=53

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 10:52
    Debbie wrote: Phase 2. when i am not herxing i feel stronger and filled with more energy than ever before. the white candida coating on my tongue is completely gone. this is progress. although i still have a long way to go and a lot more herxing to go, this is all encouraging.  deb Jul 27th, 2005
    ____________
    DEB: pcrlyme+.d12571.d2531 .mp4/16/05.benicar20q3hrs,noirglasses,
    nosun, noDfood. celexa. 4/23 minoqod. 5/5quer 5/30mp. ph2.6/29 d125-41d25-26

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 11:03
    DNStog  wrote: Yesterday I made a list of improvements since being on MP which are listed and categorized as follows:

     
    Aug 16th, 2005

    ~ ON BENICAR ALONE, THE FOLLOWING NEUROPATHY CHANGES OCCURED:

    Stumbling, Atrophy: GONE

    Light headedness, Brain fog: GONE

    Falls and fear of falling: CEASED

    Balance: NORMAL (can walk down steps w/o holding railing}

    Handwriting: NORMAL

    Tightening of Achilles tendons: GONE

    Arthralgia: GONE

    Paresthesia: GONE

    Neck Pain: GONE

    Sciatic-like Pain in left leg: GONE

    Concentration: BACK

    Decision Making Ability: BACK



     IMPROVEMENTS PHASE I ANTIBIOTICS ADDED:

    ~Periodontal Disease: GONE per recent dental exam" gums look great"

    ~ Granulomas: subcutaneous in both upper arms due to return in May  '05 - GONE

    ~ Granulomas (subcutaneous) in both feet: GONE

    ~ Lung granuloma: DISAPPEARING (all symptoms milder than before MP)

    ~ Weight: STABILIZED

    ~ Neuropathy symptoms: some return with less severity and very short duration during the change of doses and types of antibiotics

    ~ Raynauds Syndrome: attacks are less frequent and shorter in duration 

    ~ Skin Sarcoids: itchy, weeping – disappearing – several months (some
     GONE)

    ~ Mood swings: improved in duration and intensity

    ~ Seasonal Rhino-sinusitis: markedly shorter in duration and intensity

    IMPROVEMENT PHASE II, 2ND  ANTIBIOTIC ADDED:

    ~ Insomnia: GONE

    ~ Sleepiness: GONE


    ~ Fatigue and strength: levels are up significantly  and duration is longer

    ~ Carbohydrates cravings: dissipating

    ~ Dryness, burning and light sensitivity of eyes is remarkably less severe

    ~ Ocular  pressure: both eyes improved for past several months


    ~ Hoarseness in the morning: GONE, after 41 years

    As Barney says, "Hang on, we will make it."

    Donna, still cruising on Phase II

    Added July 2007: Phase III
    I spent several years and purchased numerous types of shoes trying to find inner padding to lessen the "ouchie" of walking. :X  My feet stopped hurting during the Benicar only stage. :)

    Hoarseness welcomed me every day upon my awakening for over 40 years...it left during the Mino only stage
    .:D 


    April 2008:
    UVEITIS: I had my yearly eye exam and after a rather comprehensive check, was told "there is not any sign of Uveitis or Iritis and your occular pressure is 14 in each eye...the lowest it's been in years and years and years." I am so thrilled!!!

    Trevor and ARF staff...I will never be able to thank you enough. Cruising Donna

    DNStog / Donna Phase 3
    ___________________
    Donna: Sarcoidosis, skin, jts, pulm, neur/ RaySyn/ uveitis/ hypoth/ sinusitis/ 65lb gain: trigly-108,D25-20,D1,25-D 40 Aug05; Beni 40Q6h 12/04; MP2 4/27 abx chg 7/8; Prevacid Q48; Loritab; Synthr75mcg; Q 2Xd, MT&Prb

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 14:15
    Lilly wrote: CFIDS Progress, Weight Loss.
    Oct 22nd, 2005

    RE: My MP. I moved and couldn't find a doc right away but found one finally and restarted the MP at Phase 1. It is going along with very little reaction, so far. I am at 75mg mino and will go up to 100mg tomorrow. Before stopping I was about ready to go to Phase 3, having done Phase 2 successfully. After stopping I kept up the lifestyle, without the meds.

    BTW, I had the most marvellous 6 weeks in 10 years while I was off the MP, due, I think, to how successful is has been for me. I am eager to complete the whole MP. I think it is just, maybe, possible that I will be able to get off disability and work again.  I lost 20 pounds, due to MP, too, I think. Feels good. Endocrine rebalancing, I'm sure.

    ____________________
    Lilly: CFIDS since 1982 disabled since 1989/ Start MP July04 / Oct04 25D - 44; 1,25D - 43/ BeniQ6H/ Phase 2 completed - now Repeating Ph1 because moving etc / Prozac Wellbutrin Trazadone

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 14:21
    Betsy G wrote:
    Oct 24th, 2005
    Everything is going OK. I ended up having about 1 1/2-2 days of little to no pain. Most notable was I could move my head/neck freely. It's been at least 10 years since I have been able to move my neck like that. This was such a surprise; I just had fun moving my head back and forth :D The neck has tightened up a bit since then but not too painful. I couldn't get over how easily my head could turn, how freely, like a well-greased joint. I could move my head without my torso following. Such a strange feeling; one that I didn't even recall. Isn't that amazing? Guess I am running on a bit here but this is just so remarkable to me. I had totally forgotten what it feels like to be able to move my head side-to-side. I have lost that movement at this time but am convinced it will come back.

    Thank you, Trevor and all--The MP is truly a blessing! and your time and efforts a gift of a new life!! :D

    ____________________
    Betsy: Dec 03 Pulm sarc by biopsy Muscle joint skin| Wellbutrin Estradiol Vit E| 10/04=ACE42| 10/15/04 1,25/1,25D= 33/40| 10/16/04 Ben40mgQ6 2/13/05| Pred 40mg/No Pred 2/27/05| 7/1/05 25,D/1,25D= 16/27| Mino, NoIRs, avoid D/Sun. 5/25 100mg Mino. 6/27 Phase 2.  Phase 3.

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 14:26
    PatrickBurke wrote: I really am counting my blessings for finding Dr Marshall's sarcinfo.com and thus the MP. I consider myself very lucky to have had a relatively early Sarcoidosis diagnosis, and finding the MP before this disease totally ravaged my body. Oct 24th, 2005


    It would have been even nicer of course if I had had a Borreliosis diagnosis 24 years ago, but that's water under the bridge now. I look forward not backwards.

    I forget who but someone once called the internet "the great leveller" (referring to equality of information not death). Dr Marshall is certainly doing some levelling with it here. One of the "clinchers" for me starting the MP was the quality and professionalism of the support given by this website. My heartfelt thanks go out to all the great staff who make this possible.

    I have re read my last post and I realise that I made it sound as though I am getting my eyes blasted with bright light all the time at work. That is not the case. I have a great boss who is very supportive and indulges all of my MP light restrictions. I have wallpapered my office windows and have no lights in there at all except for my (very turned down) twin monitor PC (I have some great tweaks for lowering the light emissions). I wear my noirs and a baseball cap all the time to cover the gaps at the top. I have insulated my radiator to keep in the IR and I have even blacked out a window in one of the toilet cubicles. It is quite rare that I have to take off my NoIRs but I am a perfectionist and simply don't like compromising the MP (and my health) at all. I also don't like having to compromise my job but it has to take second place. It is my work that I am hoping will benefit from the new lenses not the MP.

    They sometimes jovially call me "Drac" :D at work but they have all seen me in the past doubled up with stomach pain and struggling to breath. And they all see me now improving rapidly. They know that I am getting better.

    Take care all,

    Drac :D

    add Dec 15th, 2005 ...........I will also have to continue with phase 2 for longer to see if the muscle herx continues. All herx is good herx no matter what phase you happen to be in.

    PS I almost forgot to mention the consultant pulmonologist has discharged me. He says that my sarcoidosis lung involvment is totally gone and he can do no more for me. I am now left with just my GP and what is left of any systemic involvement.

    Thanks, thanks and more thanks to the team for all your hard work. In over 20 years of being ill this is the only place that I have found some real help that works.

    see also
    PatrickBurke: return to Life
    PatrickBurke list of improvements to my health since the MP
    ____________________
    Pat: Pulmonary Sarcoidosis dx 5/04; No D tests; Avoiding D/light+noirs since 6/04; Benicar 40mg q6h; Mino q48h; abx2+3.

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 14:33
    Julia wrote: My Story of MP Twenty months on, I’m steadily getting better. Oct 26th, 2005

    When I was first diagnosed with sarcoidosis 2½ years ago, my main problem was uveitis in my eyes.  When four courses of steroid drops only provided temporary relief and my sight was getting rapidly worse, I started to do some internet research. 

    What I discovered amazed me.  Other sarc sufferers described symptoms of health troubles I had had for many years, without realising there might be an underlying cause linking them all.

    The support groups didn’t hold out much hope of permanent recovery however.  They seemed to be full of hurting people desperately trying to encourage each other through the agonies of the standard steroid treatments.  A frequent cry was, “My doctor says my test results are now okay; why do I still feel so awful?”

    http://www.sarcinfo.com was the exception.  Here I learned of a biomedical researcher, Trevor Marshall PhD, who believed he had cured himself of sarc.  The theory that it was a bacterial infection seemed to make sense.  He had experimented with different antibiotics with some measure of success, notably when using the two-day pulsing regime that Thomas McPherson Brown had used for Rheumatoid Arthritis.


    The breakthrough came when Marshall introduced the use of an Angiotensin Receptor Blocker (ARB) (Olmesartan/Benicar), which appeared to potentiate the antibiotics and help the immune system to fight the hidden bacteria. 

    There were enough people trying out his treatment and excitedly reporting positive results to make me think it was worth further investigation.  I soon decided that becoming a guinea-pig for the Marshall Protocol held less risk than the only alternative my endocrinologist could offer, that I should do nothing until I was bad enough (in his eyes!) to need steroids.  There were no costs involved with the MP, as advice is freely given on the website, and the medications are prescribed by your own doctor.

    My endocrinologist read Marshall’s research papers, but felt that the MP was too risky and untried.  (But he did encourage me to try reducing vitamin D and keeping out of the sun, as my kidneys were in danger of packing up with hypercalcaemia.  This worked dramatically within two weeks.)  My GP read them and decided that the ARB Olmesartan was too risky at the high dosage required by the MP.  However, he was willing to give me the first antibiotic, minocycline, as it’s regarded as harmless enough to prescribe for teenagers with acne.

    The first few weeks on low-dose minocycline every other day were just amazing.  My eyes began to heal, and other symptoms began to resolve.  When I went back to my doctor he took one look at my beaming face and said with a smile, “I suppose you want the ARB now?”  How thankful I am for his open-mindedness!

    Twenty months on, I’m steadily getting better.  The treatment is no picnic.  As the bacteria are killed, they release their toxins into the bloodstream, causing an exacerbation of symptoms known as the Jarisch-Herxheimer reaction (herx).  The dose of the antibiotics has to be regulated so that this effect is not disabling.  This means that the MP takes a long time – some have been on it three years now, and while able to live a normal life, are still ‘cleaning up’ the remaining bacteria.

    The list of symptoms I’ve had, and the progress on the MP:

    uveitis                                                  gone
    fatigue                                                  much less frequent
    arthritis & swelling in one ankle                  not yet resolved
    muscle cramps (legs, abdomen, hands)       almost gone
    limb & joint pains                                    almost gone
    insomnia                                               gone
    restless legs                                          somewhat less frequent
    tennis elbow                                          gone
    carpal tunnel syndrome                            much less frequent
    sweats                                                 gone
    cough                                                  almost gone
    dry mouth                                             gone
    tinnitus                                                 gone
    numbness & nerve pains                           gone
    eczema                                                 went & came back
    hay fever                                              gone
    swollen glands                                        gone
    nose bleeds                                           almost gone

    dust mite allergy                                     gone

    The loss of my annual misery with hay fever was an unexpected bonus!  A few months ago I lost all my lifelong atopic eczema as well, but it has come back a bit – probably just with the ‘herx’.

    Julia

    ____________________
    Julia: Sarc dx Spring '03. No D tests. Light/Vit D restriction 8/03, Mino 2/04, +Benicar 5/04. Phase 2 from 8/04, Phase 3 from 11/04. Q from 6/05. Benicar 4x40.

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 14:37
    Wytnez wrote: Progress. I am so happy. no wheezing in 12 minute Presentation: Oct 27th, 2005


    Hello MP family,

    I have another great milestone to report.  I am very happy about this.  Tuesday in a leadership meeting I had to do a 12 minute presentation on our record retention program.  Of course I was very nervous speaking with the spectra shields on in front of the leaders ( CEO, COO, CFO and nursing directors etc ) but the reason I was nervous was because I didn't want to start wheezing.

    I thought "man I have not been wheezing that much at all and this is a lot of talking so I hope that I can make it".  And not only did I make it I got a great compliment from the CEO today stating that it was a awesome presentation! The I.T director complimented my presentation as well and the Business Process Director.

    I am so happy.  Not one time did I wheeze during this presentation nor did I get out of breath when saying long sentences.  I feel so good.  Literally.  My breathing is so much better than it was last year about this time.  In fact, it is getting better every day.  I have been diligent in avoiding the sun and protecting my eyes and I haven't had a MP vacation ever and I think it is paying off for me.  I just wanted to share that with you all and I hope that this testimony will help someone who is having doubts.  Hang in there you will see results.

    Happy MPing.


    Saj 

    and December 11th 2005: Beginning Phase 3

    I am about to start p3 tomorrow.  I am excited to do some HOST cleaning.  P2 was not easy but it was doable.  Thank goodness you can control the amount of herxing you get by following the protocol to the T and listening to your body. 

    My symptoms are still wheezing but it is waaaayyy better than when I first began this protocol.  I no longer hear that wheezy whistly sound when I take a breath in just to say a word.  I continue to work everyday sometimes too long of days but that is the nature of my job sometimes. I continue to avoid the sunlight/bright lights, and watch my D intake.  I live in these darn Noirs.  I am not going to know what to do when it comes time to give them up.  Don't get me wrong I can't wait for that day but I have worn them for so long that they have become a part of me.

    My sleep is still good.  I have had some nights where I woke up and couldn't get back to sleep because of the wheezing but that extra Benicar at 20mg would take care of that.  My energy is still good.  I rest when needed and try to get plenty of sleep.

    It will be 1 year in January since starting the protocol.  And I can say with the upmost honesty, that I am so much better than last year when I was diagnosed.  I will have my D levels tested this coming wednesday and I am hoping to see some good positive results.  But as far as my symptoms go, I am getting better and better every day.  I hope this encourages you all to keep on keeping on. 

    This is a curative therapy so you have to purpose it in your heart to be in it for the long haul.  We are all in this together whether it seems like it or not.  And those of us who are almost to cure want to be there for those of you just starting out.  If any of you needs to PM me for encouragement or just to chat, please do so.  I would love to hear from you.

    January 2007:
    I feel like I am moving more air these days.  I feel like the lymphnodes are getting smaller because that cloggy feeling is not so clogged up anymore. 

    The low back pain is gone. I am eating less and moving around more.  Working more that is for sure. 

    It seems with each cycle, my symptoms increase and then they get better, some are even gone.  I like that.

    Happy MPing.

    saj

    see also:
    Wytnez 2 year Anniversary - Phase 3 update
    ____________________
    Saj: sarc lungs,1,25D=32,D25=10,1/24 phase I, phase II 5/2 100mg mino + 2nd antibiotic + beni q6h, 8/29 125D 33, 25D < 7 Phase III

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 14:44
    Ms Dale wrote @ sarcinfo: If a person were to ask me what was the most important aspect of the last three years...I would tell them "ATTITUDE" Nov 11th, 2005

    I have been making up quality time with my family that I have missed for many many years...

    This month (Nov 2005) is a celebration of 3 years since getting my first Rx to start the Marshall Protocol!

    The road has been the best one traveled EVER in my history with Sarcoidosis and treatments of old. 

    I am doing well and wish to express to everyone that the return of health and quality of life on the Marshall Protocol is amazing!

    Some of you new to this site and the MP, may think...3 years?
    Yes - 3 years - and think of it this way....

    Either you submit yourself to a 'lifetime' of illness and this disease progressing ( believe me it does progress ) - or you decide to... find a doctor who will treat you with the MP, maintain a positive attitude and get through periods of Herx - ask questions and receive help with the MP meds to make the Protocol work for you, moving forward with commitment and fortitude  - and discover a feeling of Health that you have forgotten ever existed for you!

    If a person were to ask me what was the most important aspect of the last three years...I would tell them "ATTITUDE"

    You will/may have days when it is challenging - think to yourself -
    struggle - juggle - keep moving forward" and you will get there!!!

    My wish is for everyone afflicted with the disease of Sarcoidosis - to get to the level of health and non-symptomatic life I am experiencing today!!

    sincerely,
    Ms Dale

    Ms Dale true miracle of healing 
    Ms Dale re her MP Journey 
    Ms Dale re progress on MP managing Family commitments
    : Pics How Do You Define a Hero a pdf with pics of Ms Dale. to print.
    : Pics The Many Faces of Recovery pics of Ms Dale, Meg, Belinda, Lowelle

    __________________
    Sarcoidosis: MP Nov 2002

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 14:49
    Carole wrote: History and Improvements... Nov 13th, 2005

    February 3, 2004 - Began Marshall Protocol

    My first testimonial on 2/28/04 at SarcInfo.com:

    SarcInfo has given my life new direction!  My search began six weeks ago to find answers to my chronic and acute maladies following an ER visit in December 2003 for extreme leg pain and inflammation, which ultimately lasted seven weeks. With an abnormal chest x-ray and blood test results leading to additional CT scans, a PET scan, and a bone marrow test, this website helped me in confirming what I had been living with for a lifetime!

    My symptoms throughout the years have involved prolonged fatigue; unexplained rashes and recently extreme reactions to mosquito bites; intense itching; loss of hair and weight; breathing problems; sinusitis; bronchitis; palpitations; tachycardia; PVC's; elevated blood pressure; hypothyroidism and goiter; migraines; muscle, bone, and joint pain; swollen salivary glands; blurred vision and loss of vision; edema around eyes and in extremities; irritable bowel and polyps; vertigo; bursitis; tendonitis; fungal infections; and sleep problems. I have had many surgeries, including the removal of a pituitary tumor; suffered from Epstein-Barr and mono; fibromyalgia (confirmed at the Mayo Clinic); have had a positive ANA blood test for lupus; and have recently been diagnosed with osteoporosis and severe reverse absorption upon having a root canal. Ironically, through all of these problems, I have led a very active personal and professional life, being a teacher of 32 years.

    With timely responses and support from Trevor, Meg, Belinda, and Pippit, I began my plight to encourage my internist, oncologist, surgeon, and pulmonologist to consider the possibility of sarcoidosis through the research that I found within this website. Even though my elevated D-hormone and ACE levels were convincing, the oncologist insisted that I have the mediastinoscopy to ensure that I did not have lymphoma, since a February CT scan revealed increased lymphadenopathy, as well as slight compression of the trachea and central bronchi.


    Well, now I can happily say that the "Marshall Protocol" has given my life new direction! Today I received the results from the third CT scan since I began the protocol: "Significant interval improvement with decrease in the mediastinal and hilar lymphadenopathy.  Resolution of the right perihilar atelectasis or infiltrates."  It was reported that the largest nodes now only measure 13mm.

    -I no longer have nosebleeds from nasal sores,
    -no longer have chronic headaches/migraines, and
    -no longer have swelling, bloating,
    -or general muscle/joint pain, except for pain behind my knees. 
    -My heart symptoms have been nearly eliminated, and
    -my thyroid function must be improving according to the recent blood test. 
    -My hair is not falling out, and
    -my blood pressure has gone from 180+/115 to 90-115/50-70. 
    -My sinus problems have disappeared, and
    -my sense of smell has returned. 
    -I do not have rashes and
    -do not have severe reactions to insect bites. 
    -My teeth are not as sensitive, and
    -my balance has improved. 
    -My ears do not "ring," and
    -the bouts with blurred vision have decreased. 
    -Finally, my legs are getting stronger.

    My herx usually consists of throat pressure, behind-the-knee pain, scattered muscle pain, hip and leg "bone" pain, and generalized itching.  The palm lesions are still visible, and more lesions seem to be appearing on my face.  I am still plagued with insomnia. (Maybe the Synthroid reduction today to 100 mcg. will help.  I'm to have another thyroid test in six weeks.)  I avoid the sun and food with D.  I no longer take any supplements and try to reduce foods with folic acid/folate.

    Words cannot express my heartfelt appreciation to Trevor and the moderators for their dedication and perseverance toward helping others.  My prayers have been answered, and I have been truly blessed.

    With sincere gratefulness,

    Carole


    see also:
    Carole: MY MP Story
    Carole Living Proof of MP
    Carole: Edema resolved and Muscle strength and tone return.
    Carole: celebrating my most recent test and CT scan results
    ____________________
    Carole: PWC 50+ yrs; 20+: CFS, FM, Pituitary, Thyroid, IBS, Cardiac, OA, Migraines; +ANA; Osteoporosis; 2/04 Mediastinoscopy~Sarc; (1/04, 7/04, 1/05, 7/05) 1,25: 85(wks w/no D), 50, 25, 40; 25-D: 41, 33.48, 22.56, 20.48; ACE: 68, 45, 37, 43; Resolved Chest CT +

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 14:53
    CJ  wrote re: Success requires change to outmoded ways of thinking. Nov 16th, 2005

    I think we all look back and see things that set off light bulbs in our minds - in regards to the past. I do believe we are stronger than we can begin to understand. I have been diagnosed w/ sarc for 15 years and I have been ill since age 18( going on 25 years) I went from doc to doc with no relief and finally completely gave up and lived with my sick body. No one would have wanted to hear that I was sick...because I was managing. Managing to care for husband, Children, home and garden, community involvement. Managed to lose my steroid weight over and over and seem to always be put together hair done, make-up on:)

    The last time I was on steroids I built a Beautiful Christmas float with 7,000 lights for the local Fantasy of lights parade- BY MYSELF!!! It was gorgeous if I say so myself:) It's probably what kept me from harming myself  that winter as I endured my worst steroid induced depression ever. Would anyone have ever believed I was such a state? No. I knew but, at that point I was just doing what I could to stay productive and sane. I look back at my picture taken next to my float, Santa hat on, face roundand ready to pop, my eyes so beady you could barely see them. I remember that when I touched my face,  it was so fat and swollen, I could not feel bone anywhere.

    I remember that there is no cure out there for me...out there. Just more of the same nightmare. I Know what I know...and no one will ever tell me differently.

    Productivity has slipped farther and farther away as the years have passed. Life in general had become one huge effort after another, and I wasn't always able to manage. I was getting by and then I wasn't... It took 4 days to put up my christmas tree last year. I slept most of Christmas day. Managed to open gifts and get dinner ready. I began to rely upon my 20 year old daughter like an assistant( thank God I had her) I couldn't keep anything straight in my head, dates, appointments...you name it. She still says I'm abnormally forgetful and she worries. I assure her I will improve.

     I speak to my doctor of feeling debilitated and disabled. He says "we don't consider you disabled until you have lost 50% if your lung capacity"( or was it function?) I didn't even reply to this. All I could think was Who are YOU to tell me how disabled I am !!  Or that I should be content with any level of disability!!I sure as hell am not going to get that BAD!!. I define my illness myself. No one will tell me differently.

    I behaved for all these years and did what I was told... and became all the more ill because of it. No more of that.

    My sister, who is the  person in the family with the best medical understanding - ( or so it has always SEEMED :) Let me know that she really thought I was grasping at straws with this protocol. I already knew because, she used to ask all kinds of questions trying to trip me up somehow. I always had an answer. She just recently admitted she now believes in my decision, simply because she hears such a huge difference in me over the phone. She, by the way will not give up smoking to save her health. All I can think is if it were only that simple... (I'm smoke free 9 years)

    We are ill, and we have respect for ourselves, our minds and our bodies. We ARE doing ALL THAT WE can to heal. Even though there are people out there who's words and actions would stop weaker folks in their tracks, we percervere. We don't have a choice. We are Strong. 

    I ran into a Major Bacterial die off roughly one week after starting Beni. Bad enough that it had me ready to dump the whole thing. Thankfully, through my fear I could hear a voice of reason saying to trust my decision and hang on. Not to mention Trevor's letting me know I had to change my way of thinking if I was going to get make it through this. It was a major break through for me and my largest hurdle, thus far, thank goodness. Hang on... the ride may get bumpy, but it's worth it!

    Wishing you GOOD HEALTH!

    Send them (cwd) back to Hell is a perfect sentiment!!

    CJ

    February 2007:
    Good news to report. In the past several years going out in the winter air has led to SOB / use of inhalers ( which did little...even when used before going out)

    With the temps being well below zero here in Michigan recently , it occurred to me that I wasn't suffering much. So I have purposely breathed heavily through my mouth  when walking to/from my car. ( in below zero temps) I found it DID NOT DISTRESS MY LUNGS. No Coughing or shortness of breath, no need for inhaler. Even when sitting in my frozen car afterward.  This is very telling for me because It had gotten to the point of cold air being so hard to handle, it caused  quite a bit of anxiety. I am happy for this sign of healing. Will be glad to share the info with my pulmonologist in a few weeks.

    SOB now really only comes from movement/exercise. ( NOT that I exercise...I do not)
    ____________________
    CJ: DX pulm sarc 6/91 w/ bronc. Asthma Avoiding D& sun NoIRs.MP 5/27/05 BenicarQ8H/ now Phase III

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 14:55
    DrVikki wrote: re MP and LYME with co-infection: I have been thrilled with the MP to date.

    Nov 17th, 2005:  EVERYTHING the MP web board said to expect - has been my experience. Everybody's feedback has helped me to identify what I've been going through - from the new hot flashes, chills, body odor, and other symptoms I had not previously had. I have more faith in the MP than anything I've tried in the last 12 years. I thank you so much.

    I HAVE moved on to phase 2.
    Again, what the MP said to expect has come to pass so far. I'm in the beginning stages, but it's so nice to be excited about the herxing and the days of feeling even better in between.

    Vikki ... 

    see also DrVikki: - going out in the world
    ____________________
    Vikki: Lyme/co-infec diag Oct04 /misdiag 16yrs /back & neck pain /diges prob /headaches /fatigue /tachycard /tinnitis /Nov04 1,25D=65 25D=26 /light avoid /Noirs /Beni July17 Q6H /100 Mino/ Phase 2 11/7/05, now Phase 3.

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 15:00
    MicB3x wrote: The quicker you start the sooner you will start healing. I wish I had the year back that I spent researching it to death. Nov 23rd, 2005


    But there are a lot of questions to ask yourself about yourself. It's not the quick fix that we as humans have gotten used to or often demand, but it really is the only game in town.

    I am responding very well to the MP medications, even better than I could have imagined.

    Starting Phase 2:
    Slept fairly well last night. My Head / Brain fog is clear this morning. Breathing is and has been very good. No or minimal neck/back pain today. No chest pressure or pain or heart anomalies. Ringing in the ears is minimal. Nose is still runny.
    I feel good today!

    see Summary of Phase 1: by Mic.. (a recommended read)
    _________________
    Pulm,LymphDx1977/NoPred/NoD+Bolle100=12/04
    Remeron7.5mg/Diazepam10mg/NitesOnly
    BW1/05=ace59,25hyd=22.9/1,25d=40/EBV4.49
    Sleep,Fatigue,MentFog,SwlLmphs,Ben20mgQ6H11/28/05
    Phase2=01/01/06

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 15:03
    CFSGirl wrote: CFS/FMS/MCS Noting Improvements Nov 27th, 2005

    1. I walk around the house at a faster pace than I have in 16 years. Before I walked as slow or slower than someone 90 years old. It is not totally "normal" yet, but a definate improvement.

    2. Tonight while on Internet, noticed there was a lessening of the constant band of tightness around my diaphram/rib cage area. Instead of being a big thick wide band like a belt squeezing me to death, there were areas of tightness and then areas where there were no tightness. This has not happened in the last 16 years either.

    3. Tonight I feel more calm and clear headed, able to focus than I have felt in a long time also. I have been waiting for months to be able to focus enough to go through the new Medicare Rx Program and just could not do it. It seemed too overwhelming, but I was able to go through most of what I need to be able to make a decision.

    What a change from yesterday when I was a total mental/emotional mess. It makes me laugh!:)

    Forgot to mention, another minor change. I had to drive to an unfamiliar place tonight by myself, and of course in the dark which makes it more difficult to find a place. I did get a little lost, but made it to my destination. The positive change is that usually, since CFS, this would have given me major anxiety. I had none whatsoever. I didn't get afraid or worried. It was great. The only "worry" is that it is hard to see dark objects or people walking across the street or riding bikes alongside the road at night with the glasses. Even as I am typing this, I am not having my usual frustration at myself when I misspell words, or type things backwards or with incorrect grammar. If it happens, oh well, big whoop. No biggee. Its nice not to feel irritated at myself.

    Add January 18th 05:

    I just wanted to do a quick post to remind myself of two more symptoms that have gone away (hopefully for good.) One is that I had to stop drinking water out of water bottle a couple years ago because when the water hit the back of my throat, I would choke, so I had started drinking with a straw out of a glass or water bottle. I realized a couple days ago that I had been drinking out of the water bottle for a couple weeks now, and have not had a choking attack from this. I had looked at this as a neurological type symptom, and think it was.

    Also, for the last aprox. 16 years, my right hand would have times when it visibly trembled or shook, and even when it was looked like it wasn't shaking, if you put a piece of paper flat on top of it, it was shaking.
    -Today I noticed that my hand wasn't shaking or having any mild tremble at all. I showed it to a friend who had seen this before and he was surprised to me my hand so steady.

    Yeah! A few more little things to keep me going and give me hope.

    When I have the energy, I need to look at my list of symptoms I had written a year ago, it is at least a page long, and see if any other things I don't remember now, are gone. It is so neat to start writing about symptoms that are gone, instead of always adding new ones to the list!:)

    CFSgirl, still slow and steady.

    ____________________
    CFSGirl: 1989 CFS/FMS/MCS, Sudden Onset, Disabled since 1990. Esophogial Spasms, Horrific Spine pain. Symptoms,too many to list.10/14/05 started D diet & sun avoid. 10/20/05 Blood tests taken 10/24/05 rec'd NoIR glasses. Current Meds, Neurontin, Klonopin, Bentyl

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 15:04
    Marypat wrote: re Anxiety ... I have a life again. Nov 28th, 2005

    For years [about 20] I felt great anxiety [as though I would jump out of my skin] all the time.  Also, I spent a lot of time depressed and teary [for no reason].

    I've been on the MP for 1 & 3/4 years and recently except for the occasional herx in this area, I have none of the previous awful pervasive feeling of anxiety or the overwhelming depression/teariness. 

    Two weeks ago I had 4+ hours of this 'anxious' {herx} [almost like it were part of every cell in my body] feeling. I can't believe I used to live like that all the time.

    Last summer [of 04] I had weeks of {herx} depression so bad that I wanted to quit the MP for at least a few weeks to give myself a break.  I was encouraged to continue the MP and did.  It finally stopped.   Now I have occasional short times of being down that I am sure are herx.

    I know that the loss of these debilitating symptoms is due to the MP.

    :dude: Three Cheers for Dr. Marshall, Meg, Belinda, Barb and all the wonderful selfless volunteers!  I have a life again.

    Marypat

    ____________________
    Marypat: Sarc-biopsy 1977 no pred. ITP; Type II Diabetes
    Hashimoto's (no med now) 5/03 no sun  exp./Vit.D-diet & NoIr 6/03: 25-D 17, 1,25-D 44; 12/03: 25-D 10, 1,25-D 23; 12/04: 25-D 12, 1,25-D 32. 10/03-30mg Ben. tid mino.qod. Ph.1 -3/04-6/04 Ph.2 -6/04-9/04 Ph.3-9/04

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 15:06
    2bonnie wrote: I feel the LIFE returning, yes even through the herxing, I feel the life, my life returning.... Dec 1st, 2005

    greetings,
          I am a real person with a real disease called sarcoidosis. I had my colostomy in 96 prior to my sarc diagnosis.
    I was diagnosed in 1997, put on prednisone, which is the standard for the band aid that big money pharmacological mega companies provide for the relief of this disease in order to breathe.
     
    Because of the misinformation about this disease which you can find on webmd, which includes that only certain ethnic backgrounds get this disease (of which I am none) and the lie that it will BURN ITSELF OUT..
     
    yeah after 2 yrs of prednisone, I could breathe,
    but I also gained 150 lbs,
    became diabetic
    and ended up in a wheelchair
    with a colostomy.
     
    I have been on this protocol for less than a year, and am having dramatic effects.
     
    *I have lost over 100lbs,
    *no longer take glucovance for diabetes
    *nor the high blood pressure meds,
    *oh yeah and I got glaucoma too, which I no longer have.
    *Now I am out of my chair,
    *my lymph glands which are the positioned under the heart/above the kidneys are no longer inflamed,
     
     *this time last year I was on 80 mg oxycontin 3 times a day now I am on 20 mg 2 times a day,
    *my pulmonary Dr. is astonished, as I went from a oxygen 24/7 at a O2 of 84 to 96,
    my Pulmonary specialist says your lungs don't come back from that unless it's a miracle,
     
    There are many patients who are like me that were close to death and now have life,
    My family was picking out the colors of my clothes to bury me in when my son found this site,
     
    I feel the LIFE returning, yes even through the herxing, I feel the life, my life returning....

    sincerely
    Bonnie
    Thanksgiving Letter

    ADD: December 6th:

    am feeling extremely well, 

    am tolerating cigarette smoke of others where before was EXTREMELY intolerable,
    also accidently forgot to put on oxygen and fell asleep on couch, but woke up on my own several hours later, it's absolutely incredible how I am feeling.
     
    p.s Feel that mindset and not dwelling or telling anyone new in my life about my dis-ease is major factor in my seemingly miraculous healing,reaffirming this by having pictures of myself in happy times on frigerator, cabinets, only waqtching positive shows on t.v helps lots as opposed to watching the law & order shows, I now only watch the animal planet,discovery, and the wisdom channel which onlys shows positive healing techniques, book reviews ect.
     
    I hear&see people in my dr.s office,everyone kinda looks at you with this sickness in their eyes, then theres me, smiling talking to those who look the saddest, (excuse me, you really look down today, but the color your wearing really just is beautiful on you, or you know you don't look well today but I can see that you gave the ladies a run for their money when you felt better ,your still quite a looker for a man your age.
     
    It broke my heart when dr. told me that I was so close to death, that seems so long ago.............loving yourself so that you can pass that seed onto others is really a win-win situation,one I am finding can and is saving my life, so don't worry........just be happy :) blessings for your work 2bonnie out

    Poem: Dedicated to those who have learned how to moondance :)
    ____________________
    2Bonnie: Dx: Sarcoid97 / diabetic anxiety weight loss bad pain/ O2 2L sleep
    beni40mgQ6H June05 / NoIR/ avoid light&D/ avinza percoset quinine magnes ambien/ 1,25d-133.3/ 25-16.9/ tested aug16/05 orig.#25-33.7/ 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 15:09
    KenC wrote: Crohn's Disease.. noting improvements on MP. Dec 7th, 2005

    Since beginning the Marshall Protocol I noticed the following conditions disappear:

    1) candida infection on the corners of my mouth
    2) heartburn
    3) arthritis in my hands.

    I used to be able to induce cramps in my hands simply by squeezing hard on something for a minute or two.  No more.

    I'm using the MP to treat Crohn's disease.  I've had Crohn's disease for over 25 years and I have not yet had any surgery.  However, my gastro told me there is nothing he can do at this point other than to remove my colon.  It has inflammation and ulcers throughout. My illeum mysteriously healed itself.  The activity in my illeum is mild.

    The MP has enabled me to get almost totally off steriods (2.5 mg hydrocortisone or 0.5mg prednisone), something I have not been able to due during the last 5 years.  I normally need 15-20mg of prednisone to stay out of the hospital.

    If I were you I'd get on the MP ASAP.

    I recently learned about the value of sleep when following the Marshall Protocol.  I took one week off work.  I slept about 12 hrs each day. What a difference!

    Normally, I get about 7 to 7.5 hours sleep each day. With the extra sleep, I have less brain fog, much more energy and just feel better all around.  With this much sleep the herx has become much more tolerable.

    Now that I'm back to work I try to get 10 hours sleep on weekdays and 12 to 14 hours sleep on weekends. 
    ____________________
    KenC: Crohn's Disease 1984, vit C timed release 2g/day, 2.5mg hydrocortisone/day, 6Sep05:1,25D=27 & 25D=12, avoiding bright light and vit D, NoIR 2%,10%&40% 02Aug05 , Beni 12Jul05 Q6H, Mino 27Sep05 QOD

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 15:10
    smccavanagh wrote: CFS Progress - My GP couldnt get over how well I looked... Dec 8th, 2005

    I have more energy and am able to go to the gym for a light weight work out 3 times a week- that is progress!

    I have filled out the questionnaire about moving to phase 2 and have gone to my GP in preparation.

    My GP hasn't seen me for about 2 and a 1/2 months since the early stages on the MP and he just couldnt get over how well I looked- he wasnt just saying it- he just kept staring and telling me that I better start recording my progress by taking pictures because he says that the changes for the better in my physical appearance are staggering!

    He has gone from a reluctant participant in prescribing for the MP to saying that he is going to go to the website himself and read up!

    Suzanne

    ____________________
    Suzanne: CFS, D tests June 05 25D=32.8 1,2D= . avoiding light and D, wearing NOIRS, Benicar 20mg q4h 26 Aug 05, mino q48h 25 mg 10 Sep 05.
    100 mg 22 Nov 05.

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 15:18
    jillbc wrote regarding her husband the FishermanList of improvementsfeeling so much better.


    Dec 11th, 2005: wrote
    -Last night was the best sleep he has had in months.
    -Overall, he is not as fatigued as he was,
    -he is not coughing as badly and some days very little,
    -his appetite is coming back,
    -his blood pressure is up a little,
    -his skin sarcs are bearly noticable.
    -He spends much more time on 3L of oxygen than before and
    -can move about without having to raise the amount all the time.

    And then there is the biggie.
    -On Friday he felt so good he went outside and drove his tractor. :dude: He has not been able to do that since spring. A buddy came over and they were out for about 3/4 of an hour "putzing" about and doing small jobs, like getting his snow tires and moving some ladders. Did he ever feel great after that. Such a sense of freedom after being confined to the house and car for so many months. Yea !!

    So now we head into new waters and see what he trolls up on this 100mg lure.

    Take care, our thoughts are with everyone as we travel these rough herxy waters, Aren't we so lucky to have such an excellent captain and crew.

    Mar 17th, 2006 wrote: Day 146 on MP,  feeling so much better ..... 

    Milestones this cycle:  He went into the local mall and walked around for about an hour without oxygen; went for lunch without oxygen for 2 hours; inadvertantly, went without O2 for 2 1/2 hours when we went out for dinner (he didn't realize that his tank was turned off); can sit watching TV or on computer for 3 -4 hrs with no O2. 

    Compare this to last October when he was on 4-6L of O2 continually and when he coughed we had to put the output up to 8 of 10 Lpm. That is as much output as you can get from  2 home oxygen concentrators. 

    We reported earlier on his decreased D levels and we were pleased with that.  His sensitivity to light has decreased so much that he sometimes forgets to put on his dark glasses.  Not good but a good sign.

    Along with the decrease O2, his activity level is higher, his interests are broadening and he wants to do more things. He is planning ahead and looking forward to the future.  Yeh, we're gonna have a life again.

    jill:) and the fisherman:cool: 

    see also
    Fisherman Update
    previous improvements post
    1 year update
    TRANSPLANT talk (preMP)

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 15:25
    Ival wrote: re RA improvements..8 months ... I am starting to be able to function ... 1 year....  I can actually feel myself getting better.


    Dec 15th, 2005 wrote:I am starting to be able to function through the herxing. We have a big stock car race the first weekend in December last year I felt so bad I was not even going to go but my friends made me go. All I was able to do was set in my truck with the heater on I think I got out one time and they road me around in a golf cart to look at the cars before the race.

    This year I was able to go to all three days without any problems. I did not get to work on any of the race cars like I used to but that's gonna be one of my goals for next year. I was able to jump up and I do mean jump in the back of my pickup truck and watch the race from the pits with my friends it was great. Looking forward to starting phase three in a few weeks. |

    Apr 12th, 2006: Today is my one year anniversary on the MP and it is already hard to remember what my life was like before I started. I remember how close I came to not going to the conference last year because I felt so bad. I think that will always be the best decision I ever made in my life. I don't see how I can top it.

    It's been a hard year of herxing but it is so much easier than the previous years of seeing myself decline. What makes it easier is you can actually feel yourself getting better. I don't know how many times I had friends and family ask me how can you keep doing this you look worse. The answer was always the same because I can feel it working. Even in some of the worst Herxing you can still feel it working well all right most of the time.

    The hardest part so far was in phase two at the level when I started getting a lot of penetration in my joints. It was hard balancing the penetration on one side and protecting your joints on the other but with a lot of practice on adjusting the abx I made it through. I never could have done it without adjusting that dosage several times. After I made it through that level is when I improve the most.

    Phase three at times have been pretty hard but the abx is a lot easier to control at least it has been for me.  I think I am going to celebrate my one year anniversary by increasing the abx since my herxs have all became manageable. That is after I go out to eat and celebrate tonight.

    Reading all the posts was so important for me at the beginning. There was a lot of days when I would go to bed thinking Carol is feeling better, Robert's doing good it won’t be too much longer and I will get there. Everybody here will never know how much you have all helped me get through this.

    Thanks to everyone involved in this protocol that definitely includes all the people that have taken time to post about their journey to health. This is definitely the biggest breakthrough in medicine.

    Thanks Ival
    see also:
    Ival: RA: Here is my little speech I gave at the Los Angeles conference
    Ival: RA: I've got my life back
    ____________________
    IVAL: RA:Started MP 4/12/05/ Benicar/Q6h/ 4/26/05/mino100/Q48h 25-D 13ng/ml/125-D44pg/ml/Ph2/june1 diag/RA/2001/Male/46/Probiotics/vitamin/C/

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 15:28
    livitup wrote: re improvements.. Lyme, Myasthenia Gravis, Interstitial Cystitis, Diabetes Insipidus, Migraine. I feel myself very slowly coming 'back to life' again.  I have no doubt that the MP has saved my life.

    Dec 19th, 2005
    wrote: For years I used to have so much trouble sleeping--only 3-4 hours at a time, if lucky, sitting up.  When I started MP, I'd tire out by 11 am, then noon, 1 pm and so on, napping in early afternoon.  Now I can't stay awake past 8 pm even if I catch a good nap during the day. I fall asleep, wake up and fall back to sleep until 3 or 4 am.  I am just starting to wake up feeling 'refreshed' for a few hours before the fatigue feeling kicks back in.

    Haven't had a migraine in weeks (used to have them in 4-day blocks every 2-3 days) so this is a great blessing.  I only get mild headaches for 4 days whenever I change any of the meds. 

    Haven't had any multiple yeast/fungal problems which was a major concern being on antiB's since I was plagued with them non-stop for many years no matter what diet, meds or supplements I was put on.  This, too, is a great blessing.

    My extreme light sensitivity and peripheral motion sensitivity isn't as severe, the 'shadow vision' is almost non-existent now. Yeah!

    hope definitely prevails!!!

    Feb 11th, 2006I feel myself very slowly coming 'back to life' again.

    I feel myself very slowly coming 'back to life' again.  I'm still quite fatigued, but no where as bad as I used to be.  

    -I was able for the first time IN YEARS drive myself to the supermarket the other day, shop, drive home and put all the groceries away!  That is an absolute milestone. 


    This is the first time I've upped my meds and not gotten a headache.  That is another absolute milestone.  My joints and muscles are still pretty sore, but I am more active so it's worth it!  Still have bouts of parasthesia with hands and feet, but not as painful as in past.  Even managed to vacation with husband and friends for a few days without suffering too many sunflares or setbacks. 

    Apr 10th, 2006: I have no doubt that the MP has saved my life.  I feel so fortunate to have found this access and to be a part of the MP community.  It is revolutionary.  It is medical history in the making.  It is 21st Century.  Where else can you find free access to such indepth tutorials concerning your own disease processes, to take part in a clinical break-through study, gain some control over your recovery, obtain free access to medical professionals, allow a forum for medical professionals to exchange information, and a forum for fellow patients to share their lives and give hope, strength and moral support to one another?  

    ____________________
    Linda-port implant Dx:Lyme, MG, IC, DI, Migraine, IB/GERD/Bar.Esoph, Osteo, Raynaud's, Sjogren's, chron.yeast Meds: DDAVP, probio, 8/27 Benicar 40mg Q6hr, 9/10 Mino 25mg, 11/13 Mino 100mg, Aug 25D-22,125D-42, Nov 25D-10, 125D-34.3, CutD/ light exp./ NOIR, 12/17-Ph2

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 15:33
    edj2001: Gene: sarc-neuro: Everything is going the way MP said it would.
    Member in Phase 3

    Dec 20th, 2005

    Over the past couple years I have experienced increasing pain in the joints of my hands. About a week after I started benicar (before mino) this pain intensified to the point where i couldn't even take the lid off a jar that had already been opened. This lasted 3 or 4 days but now has cleared up to the point where I may be better than new. Looks like I have both met and said good by to my first herx (Will Rogers said: "I never met a herx leaving I didn't like"). :cool:

    Everything is going the way MP said it would. However, were not done yet, there are still several other inprocess herxes that i have yet to say good-by to.

    more: This PM i took a 2 hour nap and was able to get into a "deep" sleep that i haven't seen for a long time.  One of those that you feel like your are climbing out of a very deep place to wake up.  I always said my biggest problem was not getting restful sleep.  Sooo, glad to see it coming back!  Feel great after it!

    Gene
    _____________________
    Gene: Sarc 98 A Fib uveitis skin cancer basal/melanoma benin colon tmr bph| proscar 5mg q24h digitex 0.125mg q24h propafenone 150mg q12h clarinex 5mg q24h armour 60mg q24h| Dec05 Benicar Q6H; D tests (1,25D/25D)11-05:50/41; 5-06:32/24; 7-06:-/11 avoid lightD

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 15:36
    Guss Wilkinson wrote: Phase 3 doing well.. Dec 20th, 2005

    Hi All

    I’d like to start off by wishing you all a very Merry Christmas and a great and healing New Year to all MP’ers and to all the fantastic life saving and life restoring MP staff.

    I reported last time that I had suffered from a herniated cervical disc. After numerous physiotherapy sessions including neck traction, I am more or less restored to normal. A little numbness in my left hand remains, and a little reduced strength remains – but all the clumsiness in that hand has gone as has all the pain…fantastic!!

    The other interesting thing is that I tried the last phase 3 combo and I really didn’t get much herx at all (except for the herniated disk…if that really was herx related?). I stuck it out for a while, nearly three months in fact – and nothing dramatic happened at all.

    I thought: “Is this it? Am I really done?” But I couldn’t really be done as I still had a few spots of psoriasis left, so some bugs must still be there.

    So about three weeks ago, I started back at the first phase 3 combo and I was quite surprised at the strength of herx that I got from it…

    …now when I say strength of herx, it is all relative of course. It was nothing that cramped my style at all…just a quite noticeable return of chest herx and sinus herx.

    -My fitness is returning regardless and I am able to train harder than I have done in many years. Our karate club continues to thrive and we have just recently graded another five students to black belt – a really satisfying achievement.

    -I have no emotional herx,
    -no fatigue at all and
    -no insomnia
    – in fact my energy levels are very high indeed.
    -I haven’t had a single kidney stone attack since phase 1.

    My family are still holding their breaths for some sort of relapse, but they are finally starting to believe that it is all for keeps this time – fingers crossed.

    I am still a little light sensitive in the eyes, so dark glasses are still a part of my image – but I do venture out into the sun at times to play with the kids with minimal consequence.

    We will be spending Christmas at the beach at the Bay of Plenty this year with lots of good food, drink, family and friends…and to think that in 2002, I thought that my days were numbered.

    Thanks again everyone – stay safe and be happy!

    Cheers

    Guss:):):):cool:

    Guss  My MP experience
    Guss Insomnia
    Guss exercise questions
    Guss Sarcoidosis Update
    Guss summary of MP
    Guss psoriasis
    Guss Sarcoidosis Psoriasis:3 years progress

    ____________________
    Guss: Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. (Started MP: Oct 2003 - D25...31ng/ml, 1-25D...76 pg/ml), Phase III since July 2004; BP 100/60. Ony mild herx at the moment! Wife also Dx

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 15:39
    jillian wrote: Miracles have happened in the past 24 hours: PulmoSarc'79 FMS CFIDS Dec 21st, 2005


    1. I slept 7-1/2 hours, deeply and straight through the night last night without having to get up to urinate! I literally cannot remember that happening ever in my adult life!

    2. My doc THANKED me for bringing the MP to his attention. And he's going to do the MP with my severly-disabled-with-fibromyalgia room-mate! (For those of you who are new, it took me three years and half a dozen docs before I found one who would do the full MP with me.)

    Sigh, life is gettin' better and better. I still marvel at the thought/feeling that I'm actually getting WELL, it's only a matter of time. All that lies between me and sound health is time (and patience :P).

    As mentioned above, yesterday's doc visit went well. Don't seem to have any sun/light flare problems (did Beni q4h yesterday). I did notice that my vision was much clearer--I may be able to renew my driver's license this year after all without needing new glasses. Also I've been able to sleep on my back for a few days. I've only been able to sleep on my sides for years as I had too much spine/muscle pain to sleep on my back.

    'til later,

    Jillian

    ____________________
    Jillian: Primary DX: PulmoSarc'79,FMS,CFIDS,etc; disabled since'93; 10/02:ACE=61, 1,25D=42, 25D=27 NOT FROZEN; D avoidance/Noirs,etc. since 2002; 04/05:ACE=77, 25D=10; 07/05:1,25D=26 FROZEN. MP started 10/10/05: Beni 40mgQ8h; 11/17/05 Mino 100mg q72h.

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 15:43
    Julia wrote: re OCD Six months on from this discussion, I thought I would add an encouraging update.


      In July 05 I wrote

    Although I no longer seem to suffer from OCD, I have in recent years developed a serious phobia about big things overhead - I can't even walk under a heavy chandelier.
    This got worse.  The big things didn't have to be directly overhead, and if I had to go near them I felt really nauseous.

    The worst was a huge 'sculpture' (for want of a better word) like a cross between a massive dunce's cap and a half-furled umbrella, that hangs two floors high beside the stairwell near my endocrinologist's clinic.  I can't avoid passing it to get there, though I always take a route that doesn't go directly underneath it.  It got to the stage where I was slinking along the far side of the corridor with my hand up to my eyes like blinkers.  I wouldn't have been surprised if the 'men in white coats' had come to take me away to the psychiatric ward!

    Dec 21st, 2005:
    The improvement came fairly suddenly over the last month or so.  The Christmas decorations went up in our mall, with a huge Santa sleigh and galloping reindeer hanging from the ceiling.  I found I could go underneath them - I couldn't last year.  My DH was amazed.  "Hey," he said, "you're not meant to be able to do that!"

    The real test was today's appointment with my endocrinologist.  I didn't care about the blood tests - I wanted to see the dunce's cap that I've had nightmares about for two years! 

    I was able to walk past it normally, and even stopped and studied the weird thing.  Still not able to go underneath it yet, but such an improvement!

    I'm more convinced than ever that

    • the phobia is caused by bacterial infection
    • the MP is dealing with it
    • the worsening was herx
    • eventually I'll be completely free from it 
    • :D:D:D:D
      Julia

    December 2006:
    My triumph yesterday was the giant hanging sculpture I pass to get to the endocrinologists department, that used to have me terrified sick.  I walked right underneath it and even looked up under it, and thought to myself, wow, that's big - just the way normal people must do all the time.

    see also:
    Julia: Sarcoidosis:  If I hadn't done MP...
    Julia: Sarcoidosis: MP Twenty months on, steadily getting better
    Julia Sarcoidosis 

    __________________
    Julia: Sarc dx 4/03, uveitis, hypercalcaemia. No Pred. MP via GP. Light/D restriction 8/03; Mino 2/04; +Beni 5/04. Phase2 8/04, Phase3 11/04. Beni40mg q8hrs. 25D 6/06: 9.2

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 15:46
    Catlady wrote:  "If you start now, you will have a degree. otherwise the years will still have gone by and you will not not have achieved a dream that you could have achieved if you had only just started...."  Lately I feel like I am really starting to beat this illnessDec 24th, 2005

    Well :) Right now I am in more of a philosophical mood than a symptom-reporting mood.

    On the philosophical front, I am coming up on one year on the full MP and so have been reflecting on my progress. I have to admit when I started the MP I thought by now all the hard work would be fully behind me, and it would be smooth sailing from here on out. 

    Progress is slow, but I am herxing plenty and know I am getting there. I follow the light and diet recommendations very closely, and have been rewarded by finally getting my 25-D down.

    In the past few months I have had to make changes and lower abx doses because I was herxing hard. I wondered if it was because 25D had finally come down. Turns out it had, whether or not that is the cause of the harder herxing requiring lower doses...

    As my one year anniversary comes closer, I just find myself so happy I decided to start when I did. After all, the time would have gone by regardless. I have spent the time working toward health instead of just treading water.

    I am reminded of an anecdote I first heard some years back:

    ==========================

    A person who has always wanted a college degree says to the admissions counselor “I am already 35 (or however many) years old. If I start working on my degree now I will be 39 by the time I am finished. I am just too old to start!”.

    The counselor says back, “Well, and if you start now, when you are 39 you will have a degree. Or you can not start, and when you are 39, 4 years will still have gone by and you will not not have achieved a dream that you could have achieved if you had only just started”.

    ==========================

    I remember when I first read this, to me it was a very powerful observation, because you so often find people who have this “it’s too late for me” attitude.

    How I feel about the MP is that yes, it takes a “long” time, in comparison to just covering up symptoms as best as I can, with supplements and other treatments, and maybe getting some short-term relief.

    But the time will go by anyway, and at the end of the MP, I can have health! It will take some work, just like getting the degree would, but at the end of the time I will have something very valuable.

    And I have a high degree of confidence that if I stick with it, I will achieve victory, because so far all has proceeded as predicted, and I have had quite a few small victories already.

    Today I printed out what Dr. Marshall said regarding the length of time to recover from CFS (by the way, my current doctor told me I may well actually have Lyme/borreliosis, but since the MP will work for that as well, we have not bothered to test for it):
    Why does the MP appear to be taking longer to resolve Lyme/borreliosis and CFS than sarcoidosis?

    I think that, in general, CFS and Lyme patients have had more long-term intervention from supplements and pharmaceuticals than many of the sarcies. Additionally, their disease is not as apparent as, for example, Lupus or Sarcoidosis, and this means that they generally are more ill before they get help. A sarc patient, for example, may die of pulmonary insufficiency or cardiac arrest before their overall systemic organ status degenerates to that of some of the CFS and Lyme patients.


    And also: "I do think it is important that CFS and Lyme patients do face up to the extent of their illness, however. Think about this - it takes 2 years or more for the bacteria to be killed, at the fastest rate your body can kill them. It is absolutely amazing what that quantity of bacteria must have been doing while they were living in your tissues :X"

    ..Trevor..

    ===========================

    It takes time to kill the intracellular bacteria and neurological inflammation is especially resistant because nervous tissue is poorly perfused by blood. The folks who are the sickest will need to be very patient because their inflammation is so extensive and it isn't possible to kill the bacteria rapidly without intolerable Herxing.
    This quote will be posted at my desk, along with a few others that I use to inspire me. Some may find it depressing, but I find it empowering, as the two or more years will go by anyway, so I might as well make the best use of them!

    Lately I feel like I am really starting to beat this illness.

    Best wishes to all,

    Catlady

    ____________________
    Catlady: CFIDS 25 yrs dx'd 2001; chronic pain migraines; 11/04 25D=21, 12/04 1,25D=48; 5/05 25D=23 1,25D=54;12/05 25D=10 1,25D=37; 12/05 Beni 20mg Q6H; Mino 1/05; Mod PH2 5/05; Q TID K-creme Gabapentin 600 mg TID

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 15:49
    Chris wrote: Your children are more at risk from associating with you and your sarcoid than they are from a few days in the dark.
    in reply to: The MP places some difficult decisions in front of you (as everyone here knows). It says stay out of the sunlight but with two young children it makes it difficult....

     Dec 30th, 2005   My kids were 1 month and 5 years when the fevers hit with sarcoid. They were victims of 1) an often missing-in-action parent and 2) associating with the victim of an infectious disease, though we didn't know about the infectious part at the time.

    It's been almost a year since I entered phase II. People are starting to notice that I'm getting better, but they still only see me on the good days. After twenty years of going downhill, 3 years to get better is ok. If they'd given me the choice of a 3 year recovery back in '83, I'd have turned it down in favor of prednisone, but not if they'd been at all honest about the real effects and prognosis of using prednisone for sarcoidosis.

    ____________________
    Chris: sarcoid diagnosed 1991, probably started 1983
    D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 15:56
    P.Bear R.N. wrote: LYME: MCS: There is more than a light at the end of the tunnel...  Improvements

    Dec 31st, 2005: I believe I have had a Borreliosis since 1963. Before starting the MP I was lucky to drive 20 miles, and then I would have to lie down for 30 min my brain would be so fried.
    I have been on the MP since last Feb and
    -now I can drive a couple hundred miles.
    -I no longer have blurry vision
    -or terrible facial pain, and
    -my other pain in spinal cord and shoulder is improved.
    -My peripheral neuropathy has stopped getting worse,
    -I am less fatigued and
    -my MCS is a bit better.

    There is more than a light at the end of the tunnel, there is a big bon fire with healthy people dancing around it. P.B.


    Mar 16th, 2006: Improvements:

    -In general I feel I am moving along nicely. I have stopped awakening in the middle of the night with my arm asleep or my fingers numb. This has been going on for over twenty years. 

    -I have noticed the burning in the soles of my feet is less, and
    -I have a bit better sensation in my finger tips. Used to be I would sometimes cut my finger and not always know until I saw the blood.


    -I can now sit up longer without lower back pain.
    -I continue to be able to drive without having loss of control of my hands grip strength, before would grip the wheel with both hands grasping so hard it would hurt but I could not stop.


    -Used to have trouble with position sense of hands (proprioception) when driving and could not use radio because of this difficulty. I can now actually sometimes relax in the car not being dizzy and can drive with one hand even much of the time.

    -I went to a movie on a Saturday night and did not have to leave because of perfume and cologne, although I was still bothered by it some. I have not even attempted this for a long time.

    I still feel poorly much of the time with herxing, and miss being outside more; but know I will eventually get out.  all for now, P.B.

    Aug 17th, 2006:
    -I noticed the other day that I was actually having fun driving on curvy country roads like I was a teen-ager in a go-cart. I have dreaded driving for so many years due to its brain scrambling effects and my dizziness that I never thought I would get this back. By next year I may be able to break out my old motorcycle.

    - I have never been able to put my pants on one leg at a time, but have to sit and put both legs on at the same time. Yesterday I actually put my pants on one leg at a time without falling.
    Before long they may declare me to actually be a human :? P.B.


    Dec 06:
    I am back to needing the 10 hours of sleep from the 9; but it still beats 12 hours.
    My light sensitivity is a bit better for my eyes; very slow progress but progress nevertheless.
    I noticed I handle stress much better than I used to, but the stress did dampen my herx as one might expect. My recovery from the stress then took less time than usual.
    My right shoulder has not been bothering me very much at all as of late, and 
    I can actually throw a ball weakly overhand now. Watch out Nolan Ryan, here I come. :cool: P.B.


    January 2007:
    My motion sickness got so bad I had trouble just driving to and from work 15 miles away. Sometimes I would even have to pull over and do it in spurts. Then I needed to lie down for half an hour.

    The MP has been the only thing I have tried that actually worked, and I struggled with every known remedy and med that might help. Now I can drive 300 miles, and I no longer get blurry vision every late afternoon if driving.


    If these two things were the only benefits I got, then the MP would have been more than worth it. Eliminating my facial pain, numb fingers, chronic sinus problems and bronchitis (etc): who on earth could have believed all these were connected to the same root cause? My allergist and neurologist are curious, and now I don't even need to see them any more. best, P.B.

    February 2007:
    MCS improvements.  I can get gasoline without much problem now and go to restaurants and movies with less symptoms.  It has been some time since I have had an acute upper airway reaction to fragrances or VOCs. best, P.B.
    ____________________
    P.Bear R.N.:
    "lyme" Borreliosis/fatigue Tinnitus Neck- Facial-shoulder-lumbarpain. BellsPalsy1980. mono age 10 and 19, MCS/chronic Benicar q8 on 2/5 q6 on phase 2. Mino 25mg2/19 100mg3/23   now only MP meds, 11/30 D,1-25=48 D25=23 4/25 D,1-25=20 D25=7

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 16:05
    DNStog wrote:  Excerpts from my Phase III post: Improvements.. Dec 31st, 2005

    I just passed my one year anniversary on the MP and physically feel so much better this year than last. Mental outlook is much improved. Eyes are so much better...no more fear of going blind. Can look forward to helping daughter plan her wedding in two years.

    Before MP, my energy and strength levels were so low.
    -Walking had become very difficult because of stiff feet with granulomas in soles, sciatic-type nerve pain in left leg, 
    -Paraesthesia in feet and legs, and
    -the beginnings of atrophy in feet. 
    Those symptoms are all gone now.

    -Raynaud's Phenomena in my right arm hasn't bothered me for at least a month. -Brain fog no longer prevalent daily... comes and goes for brief periods.
    -Ability to get words out better, but still have brief periods my tongue gets twisted or the words disappear.
    -I just realized that dizziness and lightheadedness have not bothered me for a couple of weeks. :) 

    Still frequent, but short lived stuffy nose. Mild Tinnitus still here, carb cravings come and go, nails still brittle and dry. 
    -Light sensativity almost gone, 
    -ocular pain and pressure gone, 
    -eye dryness mild and infrequent.
    -All granulomas, bruising and pain in underside of upper arms have been gone for over a year after ten years of twice annually cycles.

    -Sarc lesions on legs much improved, most have gone, seldom have any itching. -Sleep patterns are fairly normal and I feel very rested during the day...first time in over ten years! 

    -Periodontal disease is gone after eight years. 
    -Neck range and flexibility much improved and 
    -aches are less prevalent after 20 plus years.
    -No more morning hoarseness after thirty years. 
    -Digestive system in better shape, less bloating.
    -No more catching or stabbing type pain in left side of chest (lung).  

    -Today I changed the bed linens in a few minutes and felt fine during and after. Last year, it would take me over an hour to change them, having to rest in between sheet applications, cramping legs, sweating profusely, and leaving me exhausted the rest of the day. :P

    Yes, life will be much better in 2006 and my family and I are already planning a summer vacation. May be calling one or two of you MPers when we visit your country, just to wish you well. :dude:

    Wishing all MPers gentle herxing and more healing in 2006!

    Donna, still cruising ~~~~~~~on Phase III  :D

    Donna Updates
    ____________________
    Donna: Sarc, skin, jts, pulm, neur/ RayPhen/ Uveitis/ Hypoth/ Sinus/ 65lb gain: trigly-108,D25-20,D1,25-D 40Aug04; D1,25 30 Aug05,Beni 40Q6h 12/27;MP2 4/27 abx chg 7/8; Prevacid Q48; Loritab; Synthr75mcg;Q 500 2Xd, MT&Prb as needed, Mag 250mg, MP3 11/19/05

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 16:12
    CelticLadee wrote: CF I have great hopes! It feels like I have turned a corner as I feel a greater sense of wellness these days.  Jan 2nd, 2006

    -I am able to sleep more easily at night more often,
    -I have less enduring symptoms and
    -for the most part my symptoms have decreased in their intensity.
    -I have periods of time during the day I almost feel perfectly well and it really
    -just tickles me beyond words to realize I am truly getting well.
    -My activities continue to slowly expand as I am able to function longer hours without any repercussions or only slight ones.

    I believe this is going to be a good year for me!

    Happy New Year everybody!   CL :dude:

    ADD: January 21st 2006:  I feel I have "turned a corner".
    -My stamina and well being is still superior to what I have experienced since becoming ill & starting the MP.
    -I am able to do a multitude of tasks in the house each day which I could not accomplish all in one day previously.
    -The other big changes that impress me are I am sleeping much more soundly these days and also
    -my daily anxiety level has decreased significantly.

    December 2006:
    Changing our audio & video equipment today caused me to get up and down off my knees a great deal. Stretching and moving things around. It is amazing how stiff and sore I am trying to do these things but also equally amazing how much energy I have to do them. Spent all day working on our project without much fatigue. 

    Walked the pom sistas up the easement road both ways and back. Did I ever mention that I can walk briskly both ways without any effort most days? 

    January 2007:
    My skin is becoming softer and smoother for the first time in my life actually. I remember as a girl my mom complaining about the roughness on the back of my arms and no amount of lotions or scrubbing made any difference. Those granules were trapped under the skin as far back as I can remember but no longer there thanks to the MP. :D  It is one of side benefits of the MP ...  being somewhat like a beauty treatment. LOL. 
     ____________________
    Celticladee: 2001-CF/headaches.7/2002=Dx: Pericarditis. 9/2002=Dx:FM. 7/15/04=25D=27.9 1,25D=63.9. 01/13/05=25D=14 1,25D=43 8/03/04=Beni q6h 8/17/04=Full MP. 10/26/04=Quer prn 01/21/05=PH2

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 16:16
    Robertrr: Sarcoidosis: wrote this account re the Marshall Protocol for members of a sarcoidosis support group message board. Sept 05
     
     
    "you wont believe this, but here goes"

    I too, like Fred, am on the Marshall Protocol. It is working for me so far (some noticable improvements since I've been on it for about 3 months) and am optimistic that I will be able to get well. I know that will be another 1-2 years though as the protocol does take some time and it does require one to really focus on "getting well".

     
    The most difficult thing to most people (me included) is protecting oneself from the sun and protecting one's eyes from sunlight and artificial light (light creates vitamin 1,25D which in excess causes our immune system to be unable to locate and kill the bacteria that is causing our problems. In many instances, people just can't do that easily (I could not have done this protocol several years ago, as I was too active in my children's lives. It has worked out well for me that I'm at a point in my life (my kids are in college and I'm no longer in "management" at work).

    I am a S/W Engineer by trade. I've managed several fairly large projects (managed >170 engineers at one time) including projects for the early version of Space Station (not the one in use now).

     
    I have not met Dr. Marshall, but I've known a few (very few) people like him in my work (rocket scientists, etc.). He is one of the very few folks around who can synthesize the important facts from the massive amounts of data out in the world and add his own creative insights and work...and then pull it all together into groundbreaking discoveries.
     
    They say necessity is the mother of invention...and since Dr. Marshall had Sarcoidosis in some of the worst ways, it was in his interest (and ours) to work out the "cause". I believe that he has done so.
     
    His work passes what I call "the sanity test". Other leading scientists have long suspected Sarc was caused by bacteria. Researchers and MDs gave up trying to find this exact cause when they thought they had a "good enough" solution (prednisone).
     
    Since then some researchers have isolated types of bacteria from Sarc and other TH1 diseases like Lyme that are
    1) very hard to detect (small, and similar to the leprosy bacteria, virtually impossible to cultivate in a petri dish),
    2) cell wall deficient (CWD) that live within the immune system (within our bodies own defenses, such as white blood cells) and
    3) are antibiotic resistant.

    What you will find interesting is that Dr. Marshall and other key researchers have found that these "bugs" are very similar (and I couldn't spell the names for the critters....more data from MP.com) in all sorts of diseases (LYME being one of them along with RA, etc).


    Many Lyme patients are trying the MP and from what I can tell online, they are having success like the Sarcies. Many Sarcies have been previously diagnosed with other diseases such as Lyme before they got their Sarc diagnosis. All these diseases have symptoms that are so similar (result of imflammation in various systems in the body) that it is very hard for MDs to make the correct diagnosis.

    Anyway, there are many folks using the MP to get well. Many chart their progress on one of those Boards. For many of us, the MP is really the only option out there in a world where Conventional Medical Wisdom says that is "ok" to not figure out the cause of diseases like Sarc. given the world view that Sarc "rarely" kills people and may even go away on its own. As many of the folks on this board can attest, Sarc isn't that way, it doesn't go away and is very systemic (can attack many/all types of systems in the body).

    The material on the MP board is comprehensive (meaning to the layperson like me, it is not necessarily easy to navigate, as you've found). It takes time but I believe it is worthwhile spending the time to do so, even if you decide this treatment isn't for you.

     
    As a way of getting a bit familiar with whether this might make sense for you, here is a link from an article published by a CFS patient who is currently on the MP. She did a great job explaining what it takes to "go on" the MP:

    If you are still interested after reading that, I'd suggest trying to read the technical papers on the marshallprotocol.com AND sending off for the DVDs 'Recovering from Chronic Disease' of the Autoimmune Conference in Chicago last year.
     
    There were several leading researchers along with Dr. Marshall and other MP.com Board Moderators, other MDs, patients, etc. at the Conference (very full attendance). There were 3 days of discussions focused on Sarcoidosis and other TH1 diseases (of which Sarc is one), the biology/causes and a great deal on the MP (how it works, why it works, what patients are going through on the MP). It was good to hear MP patients there and see a few MDs not only advocating the MP but explaining how their patients were reacting.
     
    Feel free to email me if you'd like and I'd be more than happy to help you.

    Please know that you're not alone with this disease.
    There are people on this Board who've suffered for many years. They are all great people and can help identify how they've made it through some very trying times (as well as provide some comradarie). I've come to know them all pretty well by their posting, although I have to admit I've been a poor "poster" and tend to lurk more than post.


    see also:
    Robertrr Sarcoidosis the good news for me.  
    Robert R's progress  
    _________________________
    Robert: Biopsy Sarcoidosis Feb, 2003. lymph (lung, throat, abdomen); Oral, bone marrow: NOIRs and avoid light; 7/1/2005; Benicar Q6H 7/12/05; Minocycline 7/26; Currently 100 mg q48hr; D 1,25=44; D25=28 as of 7/12/2005; 1,25=25; D25=26 as of 10/06; Phase 2 Sept 20th 05

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     Posted: Mon Sep 11th, 2006 16:19
    jrfoutin wrote: re Motivation and Energy returns. Jan 5th, 2006


    I am not Lyme dx, but I have had a tick bite that never had any treatment and may have had a part in my illness. I don't know.

    But this morning I helped my little grandchildren and daughter move with heavy packing and lifting, then came in the house and moved furniture, vacuumed and picked up many things on the floor (a bend and stand task I have barely been able to start doing recently), got down on my knees (points of pain and weakness earlier in MP) and cleaned under couches and got back up easy enough without anyone having to help me stand, took out the trash, loaded and unloaded dishwasher and was just taking a break with the MP before starting a hefty day of mental pushups with Webmaster tasks and finishing year end reports.

    As I was vacuuming, I recalled this Spring when all I could do or cared to do was sit and stare mostly, as my black hole universe had turned into a slow motion struggle to do anything other than that. How amazing it was to have the energy to do these things this morning, and to be motivated to do them (I cared that there were errant fragments all about of scruffy stuff from moving).

    Motivation and energy will return in time. For some sooner than others, but it will return. Until then, I feel for your circumstance. It was mine not so long ago.

    ____________________
    JRF: Dec99:Sarc lung, Sep00:Weaned Pred, Mar05:No D/light; NoIRs, 8/09:125D=61|25D=12;Beni40Q8H, 8/18/Beni40Q6H, 8/23/M25, 8/31/M50, 9/14/M75, 9/15/Beni40Q8H, 9/26/M100, 10/6/ModPII, 12/31PII

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     Posted: Mon Sep 11th, 2006 16:21
    pdejager wrote MCS CFS improvements so far: Jan 11th, 2006

    Flexibility:  has improved significantly.  It used to be a Herculean effort for me to cut my toenails, I found it difficult to wash my feet in the shower, I would curse under my breath if I dropped something because it would be such an effort to pick it up.  These things are no longer so.

    Muscle strength:  a year ago I would get up out of a chair by using my arms and legs together:  I could not do so using just my legs. Now I just stand up, even from a squatting position.

    Cramps in legs:  Even a few months ago, if I tightly contracted the muscles in my feet and calf the muscles would spasm and give me very painful cramps.  Now they hurt, but no cramps (I speculate that my intake of Magnesium may have contributed, but I'm not inclined to experiment).

    These may seem trivial if you are so seriously ill that you are bed-bound, but I see them as proof that the MP is working and as a promise of better things to come.

    Thank you, Dr Marshall and your team for your untiring work and your gracious and patient guidance.
    ____________________
    Peter: MCS/CFS (1990)1,25-D/25-D 01Jul05: 38/28. 25-D 27Oct05: 16. Benicar started 27Aug05. Mino started 12Sep05. Started Phase 2 01Nov05. Started Phase 3 25Jul06.

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     Posted: Mon Sep 11th, 2006 16:24
    JudyBeauty wrote: CFS Phase 3 Life is good. I love the Marshall Protocol.
    Jan 12th, 2006

    Everything is going well. progressing in phase 2. I welcome the herx because it makes me feel like I'm healing. 
    -In fact I noticed that the heart shakey herx symptom has not surfaced for awhile. 

    -I'm very happy with my progress and I feel like I'm improving all the time. 
    -Walked around in Walgreens for about 20 minutes and then the fruit market for about 20 minutes and did just fine. 
    -Took a nap then mopped kitchen floor, vaccumed, washed dishes, changed cat boxes, and did  some laundry. 

    -My hair hardly falls out at all now. I have long hair and I only wash it once a week. It gets very tangled but hardly any hair comes out when I wash and brush it out.

    -Mood is great.  Life is good. I love the Marshall Protocol.

    Take care all.

    Judy

    Feb 15th, 2006: Phase 2 Things are going well.  

    -Noticed the lymph nodes on the inside of my jaw on each side are much smaller. This is the first time in 30 years they have been this small.

    -Mood is good and I am content to stay home and relax, nap and watch lots of TV. 
    -I can still take care of my family but I do things a little at a time and then rest in between.

    I'm so glad I'm a part of this wonderful group of people.  Hang in there everybody.

    23rd Oct, 2006: Phase 3
    Everything is going well.  My sore left elbow is improving. I don't notice it at all anymore. I don't have any pain there.

    I have not had skipping or extra heartbeats for months now. 

    Tried a few situps and leg raises and some light weights.  I'm amazed at how it seemed effortless.  I got the muscle I just don't have the stamina.  Not planning an exercise regime yet I just wanted to see how my muscles would react.

    November, 2006:
    Elbow pain has gone.  I haven't had any sensation of pain  for at least a month now.  Resolution of symptoms are creeping up on me. 
    I'm very happy with my progress.
    I do see a slight improvement in my stamina for the better but I have a way to go.

    December 2006:
    I've been having more energy lately.  My mood is good.
    So happy I'm on the Marshall Protocol.  I've been watching the LAX conference DVD's.  There is such a positive vibe with our group.  It's great.

    January 2007:
    Things are going well. Overall more energy to do tasks around the house.

    Mental attitude is good and feeling of calmness and contentment prevail.  I've been able to read some books and concentrate on the storyline throughout the whole book so that's progress.   My memory seems to be improving.

    June 2007:
    I'm really getting encouraged because my energy levels are getting better even with the  increases of abx.  Fatigue has always been the problem with me  before the MP and when I started the MP I really got zonked.  My stomach is doing better with bread but I am watching for any signs of discomfort. I'm still getting the mild herx but with less fatigue.

    I've been going out at dusk to weed my garden (15 to 20 minutes tops).  I don't want to push it.  

    Still have a way to go but it sure does feel good not to be so dragged out.

    Tinnitus is much lower and mood is good.  Right elbow not as sore.  Just little twinges here and there of joint pain.  Sleeping well and I actually slept through the phone ringing. 

    Judy:dude:

    May 2008:
    Off antibiotics: -I have more energy without the abx and less IP.  
    -Noting the disappearance of a skin lesion on my nose that has been there for the last ten years.  I asked the dermatologist about it a long time ago and she said it was an enlarged pore and the cause was unknown.  It was raised and red and I was starting to get more of them.  I kept looking at the one on my nose and wondering if the MP would resolve it.  Then a week ago it scabbed over and fell off and there was beautiful smooth skin underneath. Yeah! I hope it doesn't come back. 
    -The lymph nodes under the left side of my jaw are really shrinking up.  I only have two enlarged ones on the right side of my jaw now.  
    -Sleep: Good, Mood: Good


    September 2008:
    -Heart rate normal when going about my house cleaning and that is wonderful. 
    -Overall better energy.  Staying in the house. 
    -Tooth sensitivity is improving. 
    -Mood is very good. 
    -Seasonal allergies to ragweed is very slight. 
    -I know I will have to change my prescription glasses because I'm less myopic now.


    October 08:
    Extra Light Exposure: Twice this month for a few hours to take a ride with my husband to look at the changing leaves and Lake Michigan.  It was nice to get out.

    -A normal  heart rate when active is a welcome developement and lets me get more things done around the house. 
    -My addiction to chocolate has disappeared and I'm able to resist the bags of candy in the house (my husband is eating it all). I have been a candy junkie all my life.


    January 09:
    OK I'm starting to feel better now and energy is increasing. I went to the dentist and had my permanent cap put on and a tooth filled and did the best I have in years as far as anxiety is concerned.  I felt very calm.   So that is a major improvement.  A couple of days ago I went to a party and was amazed at how calm I felt and I didn't even take a Vallium and energy level was pretty good. The only thing I noticed is my heart rate was a little high the next day.

    I can tell my body feels more sluggish when I increase the abx so I drag around for a few days and my knee feels a little stiff.

    Things are going great.

    Judy

    ____________________
    Judy: CFS viral onset 1986 1-25D-53,25D-12 1/5 Noir's/D avoid July04/ Beni 3/22/05 40mg q6h 3/28 Beni 20mg q3h/ Keto2% Stop Benicar 4/23/05 Restart Beni 8/13/05 40mgq6hr Mino 25mg 8/22/05 Phase 2 10/15/05 Phase 3 6/11/06

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 16:28
    LH1953: Lori: w C LYME: MCS IC  Asthma ... How grateful am I. 


    Jan 3rd, 2006
    I am Happy to say that the New Year has started off in the right direction for me.
    I am now totally off the 4 meds I used to take for Interstitial Cystitis. (After 8 years)

    My colonoscopy in Nov., is now normal. (Past 3 showed inflammation through the intestines) My fissure is finally almost gone. Life is good!

    Jan 18th, 2006 re Fragrance:
    It is now 9:45, and I have been home for 1 1/2 hours, still not in need to shower the fragrance off of me. I spent 2 hours at the Mall, after 3 months of being home. Before I started the MP, I would get so sick from a trip to the Mall. My throat and ears would swell, and my lungs hurt terribly. If I did not immediately shower, I would become worse. I can smell the fragrance, but, my body is not reacting. Thank You MP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    I can't believe how lucky I am to be on the MP. I feel like a little kid, a new lease on life, a DO OVER, a second chance!

    Forever Grateful:
    May 3rd, 2006: Dear Dr. Marshall and Staff.   Words can not express how grateful I am, and will ALWAYS be for having discovered the MP. 

    This weekend, I had the pleasure of being able to not only attend my daughters Bat Mitzvah, BUT, made it through the WHOLE day!  I know that you are directly responsible for that.  My greatest gift in life outside of my family, is having the opportunity to do the MP.

    You have given me the hope of having a better quality of life again. This weekend only proves that the best is yet to come.  Dr. Marshall, as I type this, tears are swelling in my eyes because, I have missed SO many family fuctions due to my health these past years, I still can't believe I was actually there.  I will never be able to THANK YOU enough!   I will continue to spread the word about the MP, and help others as much as possiable.  Sending you hugs and kisses.   Love, Lori

    Sep 12th, 2006: I have more relief in the 1 year on the MP then the 4 years under treatment for the Lyme. I am off of 8 meds, and my light issues have improved.  I do stay mostly in the house.  I have a quality of life in the house that I have not had anywhere else in years!  I can walk a straight line again.

    Dec 2006:
    Hi All,  OK, this is BIG stuff for me, I went food shopping/banking/drove the car today, ALL BY MYSELF:cool:.  This is huge for me, I know it sounds crazy for most, but I have been unable to do this for years.

    Jan 07
    My MCS is getting better.  Lungs: I used to sleep at an 85 degree angle, almost totally upright, no pillow because I could not stand the pressure of the pillow on my lungs. Now I am able to adjust my bed to about a 40 degree angle with pillow.

    My food intolerance to wheat, corn and milk are improving on the MP.  My interstitial cystitis limits my food as well, but is improving on the MP.  If I eat foods that I can not tolerate, it increases my MCS which in turn exacerbates my Asthma, making for painful lungs.  Foods can also make me weak, dizzy and extremely tired, ALL are improving on the MP.

    January 5th 07:
    The most amazing thing I experienced yesterday was when I hit my elbow - electrical shock from the elbow, down into every finger tip.  I have NOT had too much sensation in this arm for years.  This is truly incredible!

    I have also been able to lay on my left side for brief periods at a time.  In the past this was impossible.  I would get severe pain in my neck, under my left arm.

    THANKS MP!!!!!. Lori

    March 2007:
    I had the most wonderful weekend last week.  We went to Disney.  This was the first time I was able to stay OUTSIDE ALL DAY in a year and a half!!!!!.  I cut back on the ABX, and it was a very CLOUDY day, took extra Benicar and had the 1% grey/green wraparound Noirs under my 2% spectrashield amber.  These were all factors that made it possible. 

    I have such wonderful memories shared with my family.  I know without the MP this would never have been possible.

    Remember, every time you think you can't do another Herx, think of the whole picture, and the future of a healthier way of life.  I could even breathe in the hotel room!!!!!

    April 07:
    Very interesting, when walking the dog on Sat, the retractable leash came apart.  I did not hook it properly.  It was extended 16 ft and hit my ankle straight on with tremendous force. I DID NOT get black and blue!  Before the MP, all you needed to do was touch my skin, and I would bruise. 

    _______________________
    Lori: C.Lyme (undiagnosed 10 yrs, no success tx 4 yrs) MCS IC Asthma Reflux U.Colitis Osteoporosis Hypothyroid: 8/05: D25=21/D1,25=48--12/05: D25=14/D1,25=26--8/06: D25=9/D1,25=22-- 8/06: Alupent Levothriod PBX Vital 10/ BifidoLife Phase 1: 8/05, Phase 2: 11/30/05, Phase 3:
    _____________________________________________

    also MCS:
    Barney: Multiple Functional IMPROVEMENTS
    Sam MCS Insomnia
    Sam MCS CFS IBS mini abx vacation was a very encouraging experience.
    P.Bear R.N.: LYME: MCS: There is more than a light at the end of the tunnel... 
    PdeJager/ Peter: MCS CFS: I continue to see signs that I'm getting better
    PdeJager/ Peter:  MCS CFS improvements
    ShrnHml / Sharon CFS MCS EBV MVP TMJ PCOS 28 yrs. Vast Improvements
    CFS, MCS, Fibro. 6 months on MP. Katydid
    Prugg21 Pam: MCS/CFS/FM 22+yrs: encouraging progress on the MP.
    JohnP's progress: MCS resolution

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 16:30
    Paulette wrote: about Brad's experience of doing MP with CFS

    Jan 24th, 2006: My husband has been on the full protocol for 1 year and 20 days, he started avoiding vit-d and light 2 months before that.

    -He responded remarkably to the light avoidance and even more to the benicar. This is when we knew there was definately something to this. He has been unable to work for 8 years and sick for at least 12 years(probably more), with a diagnosis of CFS.

    It is very hard at times to see the progress and at other times it is amazing. There are things he can do at times now that we wouldn't have dreamed of pre-MP.

    Progress is slow and we tend to forget to notice the small steps towards recovery, but they are there. Herxing too hard can play on your psyche and let you know what you're made of.  A support system is important. Brad at times has a very hard time distinguishing between herx and CFS. It is easier for me to see.

    He has not been moving at a very fast pace, but we realize how long and how sick he has been and know that killing the bugs will take a long time. Sometimes it has been a few steps forward and many steps back.

    There is a big learning curve with using the antibiotics. Reading the posts and listening to the moderators answers is the best solution. I read on the site every day and am constantly picking up pointers. I haven't posted for a while, but that is only because progress is slow and we feel we have a handle on things right now. We are very glad, however to know that help is just a post away.

    Paulette 
    ____________________
    Brad: CFS/FM 12years, Oct1/04-cut D-exp Oct25/04 Noirs Jan3/05 Benicar40mg Q6H Jan19-25mg mino July9/05 2nd abx 100mg voltaren Nov17/04 1,25D-33.5, 25D-16.4, D-ratio=2 July/05 25D-2.5ng/ml

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 16:32
    Ival wrote: RA: I've got my life back


    Jan 25th, 2006: The last of Phase 2 has been very well tolerated I can just about work through every hex. The third day and the fifth day are the hardest but still manageable every symptom that I'm having is now dose related. The only joints that have given me any trouble in the last month have been my hips and my toes. I have been doing so good that I decided to go on vacation last week. Everything that me and my family have been through in the last seven months I just needed to get out of the house for a while and I felt like now's a good time before I started phase three.

    So I talked one of my friends into going to Phoenix to the Barrett Jackson automobile auction for four days it was great. He knew going in that if I got sick he may be on his own and have to just leave me in the room but I made it fine. We got there early enough to go to Apache trail and tortilla flats on the first day. On the second day we went to Barrett Jackson we also went to two other car shows. The next day we made a speed run to the grand canyon, Montezuma's castle, Sedona, and the painted desert. We put almost a thousand miles on the rental car in four days. Saturday morning I went to the IndyCar museum and finished the afternoon off with lunch and sightseeing of Phoenix with a friend.

    Sunday was the hardest day we went out to Phoenix international raceway to the copper world classic. I started out sitting in the shade but it was so cold and windy that I made the mistake of moving out in the sun from ten to noon. I was covered up pretty good really the only skin that was exposed was my head for under my hat but I guess that and all the other sun exposure that I've been having was enough that when I took my noon benicar I had a major sun flair. I had major brain fog for about two or three hours and then it settled down to by 6:00 I was fine but it was exactly like when I started the protocol.

    Not bad for somebody that was told three and a half years ago by their rheumatologist that if they did not get on methotrexate and embel that they would be in a wheelchair in three to five years. Once I have made it halfway through the second phase it has just been amazing at how much better I've been doing my chronic fatigue is almost gone when I take the antibiotics it has almost been nonexistent. I sure wish I knew why I've been able to progress so fast I wonder if it's I caught my disease early or by not taking any of the immune supprescents it has helped in my fast recovery. Or maybe it is because I had low D levels to start but for whatever reason I sure am glad. There's no way from what I've been witnessing I feel sure I will make a full recovery.

    I've got my life back. Ival

    Oct, 06:
    -Diet made a big difference in my RA at the beginning of the protocol.
    -Volume was important also I did a lot better if I ate small portions all day instead of one or two large meals.
    -Things I could eat changed a lot to for some reason most of the time fresh vegetables and salads were fine
    -but I had a period where I had to steam everything.
    -I went through a period where if I ate a cucumber I would be in bed for a couple days. I think that was the strangest thing that would bring on the RA.

    It does get better though I can eat just about anything now and have no symptoms.

    Changing the antibiotic dose very slowly would help to keep the big swings of symptoms down most of the time. I always did better doing that than changing them a lot it was still a roller-coaster ride but at least you could see where you were heading.


    November 06:
    I feel like my brain is being rewired. I haven’t lost any intelligence but I’ve gained so much more room in my brain that it becomes hard to sort it all out at times.
    As soon as all the pathogens are killed I will be better than ever. Understanding what is going on always makes me feel better.

    also:

    Ival: RA: Here is my little speech I gave at the Los Angeles conference
    Ival: RA improvements..8 months ... 1 year....
    ____________________
    Ival: RA: diag/ RA/2001/ Male/ 46/ Started MP 4/12/05/ Benicar/Q6h/ 4/26/05/mino100/Q48h 25-D 13ng/ml/ 125-D44pg/ml/ Ph2/ june1  Probiotics

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 16:35
    Grace wrote: re CFS Muscle wasting:  Muscles regained and healing.

    Jan 27th, 2006: Phase 2 161 days

    My muscles and flesh all around them were stringy, like one of those roasts that when cooked falls apart in strings.....

    -I am thrilled, as is family, as I can't stop showing them my calf muscles.
    -I also have regain muscles in arms. The thighs still have away to go, but I can feel the healing taking place there.

    -I don't shuffle when walking.
    -I can roll my foot and push off from my toes.
    -I can walk further, Faster and stand longer . I still get pain in these muscle with any exertion.

    Years ago when I had fish, the pain was unbearable in these muscles so I KNEW fish made it worst. No one could explain why until I discovered MP-thanks Trevor

    Add Mar 14th 06: I have past my first MP birthday. I often thought about what level of healing I could be at  on my first MP birthday. Of course we all wish things to heal faster, but I am still very happy with my progress.

    My Doc has fancy scales to measure fat/muscle ratio, so for scientific purposes only, I allowed myself to be weighed. My muscle ratio continues to increase. I have not lost weight nor do I exercise. The increase in muscles has allowed me greater strength in regards to standing and walking. Daughter 2 said I was 'running' with her at the shops:D Most nights I still have to take panadol (tylenol) to go to sleep, because of the pain in legs.

    9th August 2006

    My muscles are getting firmer and more normal all the time. Started at the toes and now the top of me hips are herxing-real strange. I notice I am swinging my legs more from my hips now, a great improvement of my per MP shuffle.

    January 2007:
    The latest muscle improvement has been the top of my neck. At the worse of CFS I could have worn neck brace when been driven, as when my DH drove I couldn't support my head properly  with his braking and accelerating. As he gets better I am sure his driving will too, as mine has.;)

    I know what it's like looking at loss muscle :(. My muscles now just keep getting better. I even had a arm wrestle the other night:D , something I would have been to weak to even contemplate. My fingers  keep getting stronger.

    I had been doing knitting since I become ill, as it was the only thing I was able to do. Often I was too ill to do this. So you may want to think about a activity that you may feel like doing. The muscles I first felt I was able to use, were the first ones to improve.

    'old science' says "exercise your muscles and they will improve". With MP I found it to be the other way round as your muscles get better then you can do/'exercise'

    see further
    Grace: Now - I never lay on the couch or recline: March 07
    Grace improvements
    GRACE being able to do things..
    Grace All the things I can do
    ____________________
    Grace: CFS 5 yrs+: oct04 25D=26 1,25D=48 feb05D=22 1,25D=52 Jun05D=9 NoIR samitriptyline/ MP Feb05 Beni Q6H/ Mino15MAR/100mg Mino QOD/Phase 2 7JULY. Phase 3

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 16:37
    Chubby Chicken wrote: Borrelia: Herxing in atrophied sites. Decrease in inflammatory pain.

    Jan 27th, 2006: I have also experienced muscles wasting. In fact, my muscle atrophy in my scapular region was what prompted me to pursue medical help in the first place, eventually leading to my positive diagnosis for Borrelia and Rickettsia.

    I will be taking my first dose of 100mg mino today and so far virtually all of my "herxing" has taken place at the atrophied sites in the form of sharp pain and tingling sensations.  Though there is no apparent mass increase as of yet I do notice a strong decrease in "inflammatory pain" when putting pressure on my shoulder joints (ex: by pushing open a door with resistance).

    :D CC
    ____________________
    Chubby Chicken: Borrelia, Suprascapular denervation, Phase-1 Dec 9/05, Olmesartan-TR 40mg Q6H, Minocycline 75mg QOD and avoiding dietary D and sun, 04/05:Vit-D:60/40ng/mL

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 16:47
    Jeanne wrote: Crohn's: no meds required 8 months.  Energy etc.. 1 year - List of improvements.

    Jan 28th, 2006: Just wanted to write an update on how I am doing. I have not had to use any meds for Crohns since May 05 and I have no noticable symptoms. This is really rather miraculous.

    I got a virus that was going around and was horribly ill for three weeks, but most of my friends were ill longer. It used to be me that would have a terrible time trying to recover, especially from something like this virus which attacked my respiratory system. However, I recovered in what I felt was record time and am now back to where I was before I become ill. Which is to say with more energy than I could imagine. this time  a year ago I just had trouble trying to get up, shower, eat and do small necessary things for myself. Now I actually look forward to having to run some errands as I have the energy to run them.

    -My cough is basically gone, just a little here and there.
    -The liver pain is almost totally gone and the spleen pain is gone.

    -I am not the person I was before becoming ill, but I am certainly closer to becoming that person than I have been in a number of years.

    -I actually feel well enough that I have made plans for April. A first, Up until just recently I never even made plans a week in  advance as I never managed to keep them.
    -Now I am planning on a 12-hour drive from Seattle to California to attend a wedding.

    If this continues, I may even be back to work soon. How can I possibly thank you all and particularly you Dr. Marshall? I suppose the best I can do is to keep spreading the word to all who will listen.

    Thank you more than I can express.:)

    May 6th, 2006: noting improvements in a year.

    I thought this might be a good time to do an update on my condition.

    Since starting the MP a year ago here is where I currently am:
    -my chronic cough is gone.
    -My crohns disease symtoms are basically gone.
    -So far this year I have not developed any new erythema nodosums.
    -I often have  stamina and can do things I could not do a year ago.
    -Overall I feel better.
    -My head is clearer and
    -my memory has improved dramatically. 
    -for the first time in three years, I am taking walks again. Three days in a row I have walked for a mile and could have done more had my yorkie been more agreeable, but she pooped out and she weighs ten pounds, so I had to carry her.

    -I can't even tell you what a difference this is from this time last year when going from the house to the car had me in a coughing fit. Now I don't cough, at all!!!

    -I even painted my mothers door, again, a feat that could not have been done in the past three years or more.

    I am very grateful for this research and having the opportunity to be part of it. I am so grateful for the MP that I am way beyond words.

    Jeanne
    ____________________
    Jeanne: Sarc, crohns, cf, fm, thalassemia, Phase One MP started 4/9/05 40 mg benicarQ6H.100mg minocycline . No D tests. sulfasalazine stopped, 2 thyroid meds, noIRs worn always, avoid light.Phase 2 started November 7, 2005, Phase 3.

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 16:49
    Carole wrote: Edema resolved and Muscle strength and tone return.

    Jan 29th, 2006: The good news is, as I soon celebrate my two-year anniversary on the MP, the overall edema throughout my body has nearly disappeared, and the muscle strength and tone have returned. :D

    see also:
    Carole: MY MP Story
    Carole Living Proof of MP
    Carole: celebrating my most recent test and CT scan results
    Carole: History and Improvements...
    ____________________
    Carole: PWC 50+ yrs; 20+: CFS, FM, Pituitary, Thyroid, IBS, Cardiac, OA, Migraines; +ANA; Osteoporosis; 2/04 Mediastinoscopy~Sarc; Resolved Chest CT

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 16:51
    Carol wrote: RA: I’m having great success with a new medical treatment for rheumatoid arthritis.

    Feb 3rd, 2006: I’m having great success with a new medical treatment for rheumatoid arthritis. It’s called the Marshall Protocol and it is curative therapy, not just something that addresses the symptoms of autoimmune disease.  The science has been reported in several major medical publications and there is an excellent website that provides support to patients and physicians.  http://www.marshallprotocol.com

    Carol
    ____________________
    Rheumatoid arthritis dx '96, started MP 8/11/04 Initial D tests (7/11/04): 25-D 32; 1,25-D 65 Topical E1E2E3/P, Vicodin, Celebrex/ Phase 2 started 12/6/04; It took a year to get my 25D down in the teens!

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 16:55
    Gary wrote: Sarcoidosis: Phase 3 Progress.

    Feb 7th, 2006: Things are going reasonably well for me.  I have been through phase 1 and 2, and now in Phase 3.

    -Compared to 6 months and especially a year ago, I am doing quite well. 

    -Nearly all of the "feeling drugged" fatigue is gone even when herxing.  
    -Going to work is no longer a major psychological barrier, and I am enjoying work.  
    -I find myself laughing more, singing and whistling (when no one can hear), -and I have a little bounce to my step. 
    -Life is no longer a chore that must be completed because others are depending on me.... its back to being something to enjoy.

    -At times I feel like I want to exercise, but that only lasts until my next herx day.  I've decided that I need to be healthy before I work on becoming fit, so joining the health club can wait another year or so. 
    - I have maintained a weight of 160 for nearly a year since being on the MP which is close enough to ideal for me at 5' 8".    It sure beats the 205 when I was sick. 

    I see my doc in 2 days... all I need is refills.  I haven't seen her in about 7 months, which is a record since I was first diagnosed.  

    Thanks to Barb, Meg, Belinda, Lottie, and any other moderators I've forgotten, and to Dr. Marshall for everything that all of you do.

    Oct, 2006:
    All increases in immune response are no problem .. a couple years ago I would have loved only having symptoms this "bad".  I still have adequate energy for work even with the increased sleepiness.

    March 2007:
    Energy continues to increase - if something needs done I just do it.

    Gary eyesight improvement
    Gary functioning and productive, mentally and physically.
    ____________________
    Gary: dx Sarc 4/00- lymph biopsy. Neuro, lymph, eyes, fatigue, liver, kidney. Benicar 5/04. Mino 6/04, PH2 8/04, PH3 12/04. Sig herx Few non-herx symptoms except stuffy nose.

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 16:59
    RobertTownsend wrote: CFS: Overall progress is great
    Health Professional

    Feb 12th, 2006:
    - my wheelchair has been sold and
    -I have started riding my racing bike ( although unfortunately only at night, and so far only for short distances_

    Thanks for all of the MP teams help and support

    Oct 06 -daytime fatigue almost all gone, eye sensitivity much less,

    November 2006:
    -Tomorrow is my first anniversary of starting Benicar !!!
    - and next week it will be seven months since I sold my wheelchair :):):):):):)
    -My eyes improved and reading became much easier.  I became able to drive out at nighttime.

    Robert Townsend
    ____________________
    RobertTownsend: CFS 4 yrs,crippled knees ,Oct 05 1,25D 90 pMol/L,25D 38 nMol/K; Phase 1 Nov 05,walking freely Jan 06; Phase 2 Feb 06, March 06 1,25D 61 pMol/L, 25D 23 nMol/K ; Phase 3 commenced end July and CFS symptoms almost all gone, but still the herxing !

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 17:02
    KFaucher:  Ken: CFS 20 years: I am still only halfway through phase 2, makes me wonder how much better I can get.

    Feb 14th, 2006: I’ve been thinking about this all day, and chuckling about it. It is amazing how viewpoints and expectations can change with time. If I had gone through a six week course of abx and come out feeling as good as I do now, I would have been saying I was in full remission, damn near a miracle. Now, after 14 months of MP, I realize just how far I still have to go. Sometimes it is too easy to look ahead to a goal and forget to pay attention to where you are.

    When off abx and not herxing: brain fog is gone!!; I have energy; sleep is easy and refreshing; GI tract is working properly; attitude is good, sense of humor returned; I get things done, all those little projects that would normally get put off.

    I am still very much out of shape. Muscles have little tone. But my wind is good. I have one of those elliptical trainers and have not been able to use it much. Pre-MP I would go for about 2 minutes, my pulse would dramatically increase, respiration would be ragged, gulping breaths and I would get very dizzy. Today I hopped on for the first time in probable a year and a half. I stopped after 4 minutes because my legs were burning, but my pulse barely increased and breath was easy, deep, through the nose. I felt like, cardiovascularly, I could have gone a long time. And no after effects. Unbelievable! Even  throughout phase one this would not have been possible.

    Ken

    p.s. I am still only halfway through phase 2, makes me wonder how much better I can get.

    "Maybe it's all too simple / For our brains to figure it out / What if the hokey pokey / Is all it really is about" Jimmy Buffett, Mac McAnally, C. Macak, T. Baker, L. Laprise


    see also
    Ken Faucher: Phase 3 update - 2 year progress
    KFaucher/ Ken: CFS: camping trip
    KFaucher: CFS: the MP does work! 6 months on the Marshall Protocol!!!!
    KFaucher: CFS: CWD and back pain
    ____________________
    Ken: CFS 20 years
    "good days & bad days & going half mad days" J.B.
     25D=30 1,25D=57 8/2/04; 25D=19 1,25D=48 12/2/04; Avoid Sun 9/12/04, NoIR 10/1/04; Benicar 12/2/04, phase 1 12/10/04, phase 2 4/5/05

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 17:08
    Lonestartick wrote: Late-stage Lyme patient with co-infections - MP is the only treatment that has ever handled all of my infections.

    Feb 21st, 2006: I am a late-stage Lyme patient with co-infections. It was decades before I was properly diagnosed and treated. I have been around the block when it comes to treating Lyme and co-infections by the LLMD approved methods. I have done cholestyramine (Questran) with ABX treatment. As a matter of fact, I was one of the early Lyme pioneers with Dr. Shoe's neurotoxin therapy. 

    I recall that it took months for it to help me. Even then, the help was minimal - nothing compared to the MP. Actually, I was in my 3rd box before I noticed any improvement at all. Cholestyramine is not without its own side effects and risks, such as vitamin deficiency as a result of its ability to bind everything. Recently I have begun to wonder whether or not its limited effect was perhaps a result of it interfering with the absorption dietary D. That makes more sense to me now in light of my experiences on the MP.

    Prior to the MP, I was considered a treatment failure after 17 months of IV ABX followed by years of oral combinations that included a variety of ABX, flagyl, tinidazole, Mepron and diflucan. I can tell you, I wasted much time and vast amounts of money before I found the MP. This is the real deal and you don't really need to augment it with anything. Under no circumstances would I try combining it with cholestyramine. Based on my personal experience with both therapies used separately, it is not something I would ever be comfortable doing.

    The MP is not a quick fix, but it really does work just as predicted. It is the only treatment that has ever handled all of my infections. (Lab confirmed: Borrelia, Babesia, Bartonella, mycoplasma, Candida, HHV-6 and EBV.) Prior to this protocol, I bought into the idea of a “carousel of tick-borne infections”, because it seemed that once I knocked one down, another popped up in its place. All of those positive tests and diagnoses I had bought into in the past are finally a thing of the past. These days, I am the proud owner of a fully functioning immune system and it is handling everything quite nicely.

    At this point, I am in my 19th month on the protocol and I am in phase 3.  I have been pretty remiss about posting progress because I am busy enjoying a level of health that I never before could have imagined. The MP meds and lifestyle have made this possible. Having been the LLMD route from 2000-2004, I can assure that they have nothing on TM and the MP. Unfortunately, it seems that our LLMDs are too lost in a quagmire of brain-fogged patients who are seeking quick fixes to recognize the full potential of this discovery.

    Wishing you every success on your MP journey.
    ____________________
    F age 41 Began MP 7-26-04 Dx: neuro-borreliosis (chronic late-stage Lyme disease) conf by several labs, with co-infections (Bartonella, mycoplasma, Babesia); 6 yrs prior abx (17mo IV) Meds: Thyroid, 40mgBeni qid, Phase 3

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 17:10
    jrfoutin wrote: Generally more energy for longer periods of time in my energy budget.


    Feb 22nd, 2006: Monday did 2 quick runs to store, movie with guys, out to dinner with extended family and then I drove a long evening freeway errand to drop off something in another city. That was after doing a full computer day.

    You might say, "these are mostly sitting activities," until you take into account the hustle and bustle of coming and going places that required walking quickly and lots of up and down. This kind of day would have slayed me 6 months ago and I certainly wouldn't have had the mental clarity to carry on a conversation with my mother (she came along while I drove long distance at the end of day) without losing my train of thought or emotional composure. I also wasn't zonked or incapable of working the next day (yesterday), which was also a pleasant surprise!
    ____________________
    Dec99:Sarc lung, Sep00:Weaned Pred, Mar05:No D/light;+NoIRs, 8/09:125D=61|25D=12;Beni40Q8H, 8/18:Beni40Q6H, 8/23:M25, 8/31:M50, 9/14:M75, 9/15:Beni40Q8H, 9/26:M100, 10/6:ModPII, 12/31-PII

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 17:12
    lane wrote:

    Feb 24th, 2006: GOOD NEWS, GOOD NEWS: I received the results of my ct scan. For the first time in three years.

    Old results: my chest scan results were, calcified right hilar lymph nodes, lateral pleural thickening, scattered linear opacities, discord atelectasis and linear scarring. 

    NEW SCAN: minimal scarring, no other abnormality identified.
    Thank God, I knew that I was feeling better, but in the last couple of weeks I felt different. I still rest as much as possible but life is good. 
    Please keep up the good work of saving lives.
    Lane
    ____________________
    sarc dx. 1980 w/ biopsy lungs, body pain, fatigue. started mp june 04 now at phase3, 6/04 d,25- 39, 1,25-d 54. wear noirs, light sensitive

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 17:14
    ElizaH wrote: Healing Progress in Eyes, Shoulder, of old Emotional hurts.


    Mar 5th, 2006: I have reassessed what is a herx and now count anything that can be attributed to unflammation: pain, extra sleep requirement, increased disability, brain fog, increased muck in nose and throat + breathing difficulties, emotional, blood test results, and a whole host of other things.  Initially I thought it was just pain = extra sleep requirements.

    I saw the eye specialist last week and after 7 years have dropped the antiglaucoma medication (Alphagan) and halved the anti inflammatory drops (Flarex).  I see him again on 4 April when we expect to discontinue the Flarex.  That is progress.

    Some time ago I reported muscles relaxing in an old shoulder injury.  I have had a couple of prolonged sessions of muscle twitching associated with the same injury which, because of my experience with acupuncture, I interpret as further healing.  The shoulder was part and parcel of subsequent occupational overuse syndrome and other symptoms of OOS have appeared intermittently.  Inflammation is part of OOS so could it be that this syndrome itself was an indication of Th1 inflammatory disease predating my dx sarcoidosis by about 9 years?

    Another curious and unexpected effect of being on the protocol is the healing of old emotional hurts.  My mother had Parkinsons disease for the last 3 or 4 years of her life and required full time care for the last two.  She was in Melbourne and I was only able to see her about 4 times a year.  Her facial muscles were seriously affected and, like me, her face could be quite forbidding in repose.  Staff at the nursing home woulld assure me how delighted she was at the prospect of my coming down but to me she just looked as if I were a dirty smell under her nose.  This, coupled with her loss of independence, I found very hard to take and was not able to come to terms with it after her death.  It has been parked in the 'too hard basket' for 14 years but lately I have been able to reexamine it and find that I am starting to see beyond the fog of those final two years and rediscover the mother I knew and loved.  I have even revisited and older and deeper emotional hurt and there are signs that even this may heal.  This gives even more significance to 'healing beyond one's wildest imaginings' on the MP.

    I think I will be ready for phase 2 in about two weeks.

    All the best

    ElizaH
    ____________________
    Fatigue/nausea/vision/skin late98 Uveitis + Glaucoma, dx Sarcoidosis 3/99, breathing difficulties 5/05: NOIRS 3/05: Flarex eyes, Somac: 15Mar05 1,25D=80.76, 25D=13.2: Votum 40mg q6h 24Nov05 Mino 25 mg 18Dec05 50 mg 9Jan06 75 mg 6Feb06 100mg 28Feb06

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 17:18
    pdejager: MCS CFS: I continue to see signs that I'm getting better:

    Mar 7th, 2006: I have been very selfish, and have not posted for more than 3 weeks. I apologise, and hope to do better during the next cycle. I've been tied up with work, ... I had to drive, in daylight, for 4.5 hours each day,...

    -That I can now do this is truly remarkable: yes, I hurt quite a bit for a day or so, but months ago I would not have been able to drive for more than 2 hours at a time, and would have needed a week to recover. It doesn't mean that I'm going to do this every weekend (far from it!) but just knowing that I can do so if I must has greatly boosted my confidence.

    I continue to see signs that I'm getting better:
    -muscle strength and mass is increasing, even though I do little exercise and don't "work out",
    -I no longer get bloody spots when I blow my nose,
    -the average size of glands in my neck keeps decreasing,
    -I seem to be getting lots more done (I'm catching up with home maintenance after 15 years of benign neglect!),
    -I can think more clearly and don't avoid making decisions...

    Still cruising...
    ____________________
    Peter: MCS/CFS (1990)1,25-D/25-D 01Jul05: 38/28. 25-D 27Oct05: 16. Benicar started 27Aug05. Mino started 12Sep05. Started Phase 2 01Nov05. Started Phase 3 25Jul05.

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 17:21
    alayne:  CFIDS FM: noting improvements.

    Mar 15th, 2006: good news - my parents, with whom I speak and write to often, have noticed some big improvement. I quote them entirely without their permission here:

    Dad: “We've noticed a significant improvement in memory, mental processing (ability and speed), reading comprehension, articulation, spelling, grammar, etc. I'm sure you're as pleased as we are with this progress.”

    Mom: “We’ve heard and seen such a wonderful difference in your voice and e-mail writing… It has been a huge relief for us to hear you speaking and writing more like your old self again." (Granted, they've not seen my rambling posts here, so their judgement may be a little skewed. :))

    Then they asked me to contact an acquaintance of theirs who has CFS and tell him about the MP. What a good feeling. :D

    ___________________
    Alayne: CFIDS/FM 6/05:25D-34, 1,25D-69 12/05:25D-22 1,25D-44 Sick 6-11 mos/yr for 20+yrs. Sleep dysf (Xyrem), Neuro probs, Pos for EBV, CMV, C Pneu, Myco Pneu. Body totally fell apart 2005. NoIRs, 9/28/05-Avoid Sun/D, 11/17-Beni, 12/02/06-Ph1, 5/8-Mod Ph2

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 17:34
    Carole wrote: MY MP Story. Being on the Marshall Protocol has given me symptom resolution and a very tolerable life.  My family and I are elated about my overall progress.


    Mar 18th, 2006: I have been fortunate and am thankful to have been able to work non-stop (except for surgeries) throughout my 34-year career.  Of course, the school year consists of 185 working days; but, nevertheless, the demands and responsibilities go far beyond the regular workday.

    For over thirty years I have been treated for chronic infections, debilitating pain and symptoms from head to toe, and multi-systemic maladies, with regular visits to specialists and therapists throughout the Midwest.  Chronic fatigue, fibromyalgia, osteoarthritis, stress, etc., were among the diagnosed culprits.

    Being on the Marshall Protocol is very challenging, but has given me "symptom resolution" and a very tolerable life. 

    I no longer have "prolonged" issues with my muscles, joints, bones, heart, lungs, spine, vision (blurred, distorted, or loss of), senses (smell, taste, hearing), sinuses, stomach, bowel, bladder, rashes, nasal sores, loss of hair, sensitive teeth, swollen lymph nodes and spleen, fatigue, blood pressure, fingernails breaking above the cuticle, edema, swallowing, insomnia, stamina, strength, and thought processes.  

    Occasional herx-related headaches (or from too much light) have replaced excrutiating migraines, and most other herx reactions have been short-lived.  My thyroid levels continue to improve, as well as all of my bloodwork.  Also, the chest scans present normal nodes and lungs.  I have been on the protocol since 2/04.

    My family and I are elated about my overall progress, but I admit that the journey on the protocol might have been easier and faster if I would have adhered more diligently to the light issues.  I'm still very dependent on the 4-6 hour Benicar dose and the Noirs for daylight driving. 

    I am "living" proof that the protocol is the only answer to being a Th1 survivor!  I am forever indebted to Trevor and the MP!  :D

    Wishing you the best . . . Carole    
    Interview with Carole Morgan - sarcoidosis, fibromyalgia, CFS
    Carole Living Proof of MP
    Carole: Edema resolved and Muscle strength and tone return.
    Carole: celebrating my most recent test and CT scan results
    Carole: History and Improvements..
    ____________________
    Carole: PWC 50+ yrs; 20+: CFS, FM, Pituitary, Thyroid, IBS, Cardiac, OA, Migraines; +ANA; Osteoporosis; 2/04 Mediastinoscopy~Sarc; (1/04,7/04,1/05,7/05,1/06)1,25: 85(wks w/no D), 50,25,40,34; 25-D: 41,33.48,22.56,20.48,14.4; ACE: 68,45,37,43,43; Resolved Chest CT

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 17:37
    Julia wrote:  If I hadn't done MP.....

    Mar 30th, 2006: If I hadn't done pre-MP light and vit D restriction, my kidneys would have packed up (so my endocrinologist said).  I would be unable to sleep for insomnia, thirst, cramps and sweats.

    If I hadn't done Phase 1, my eyes would have continued to deteriorate and I would have been unable to see enough to drive or work.  But then I would have been too fatigued to work anyway.

    If I hadn't done Phase 2, I would have agonising cramps, shooting nerve pains, 'tennis' elbow, pains in limbs, tinnitus, and a disabling cough when I talked.

    If I hadn't done Phase 3, I would be waking with severe pins and needles (carpal tunnel syndrome), sneezing my way through the hay fever season as usual, sneezing for hours after changing the beds (if I had the energy to change the beds), waking to use the bathroom in the night, suffering from nose-bleeds, swollen glands, tooth pains and morning snuffles.

    Any regrets?  None.  Any bad points?  Herx.  But herx only brings out what's there.  If it's something you didn't know you had, you would find out about it in due time if you let the disease run its course, so you would get it anyway.  You don't escape it by not doing the MP.

    Doubts?  Some, especially early on.  It's only natural, when a treatment is new and relatively untested.  But what's our choice?  Let the disease run its course?  Buy a wheelchair, a coffin and shares in an oxygen company.  Let Prednisone run its course, with all its side-effects?  No thanks.

    February 2007:
    I'm far on with the MP, and still bothered sometimes with RLS.  BUT... when I took a few weeks' break from the MP last July, one of the most noticeable things was the total absence of RLS.  It was such a relief!  Now I know that the MP is dealing with it, and one day I'll be completely free :D:D

    March 2007:
    I used to rub lashings of moisturiser into my dry feet and deeply cracked heels after every shower to make life tolerable.  Now the problem has gone :D.  Isn't it amazing what happens on the MP?

    The agony of carpal tunnel syndrome night after night, that I had pre-MP.  That's gone :D:D

      Julia aka Happy Camper :dude:

    see more:
    Julia: re OCD
    Julia: Twenty months on, steadily getting better
    Julia:
    ____________________
    Sarcoidosis dx 4/03, uveitis, hypercalcaemia. No Pred. MP via GP. Light/D restriction 8/03; Mino 2/04; +Benicar from 5/04. PhaseII 8/04, PhaseIII 11/04. Quercetin as needed. Brewers’ yeast. Benicar 40mg q5-8hrs. 25D 12/05: 8.8

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 17:39
    Debbie y wrote:  My life is important to me and I want to live to be an old woman.

    Mar 31st, 2006: I started my MP on Feb 2 after doing alot of reading, researching and attending the Chicago conference. 

    I, too, have lung and skin sarc and was treated at the Mayo Clinic.  Prednisone was the treatment and yes, the sxs abated.  But, the prednisone affected my joints, ruined the excellent diabetic control that I had had, affected me mentally, and caused me alot of pain.  And, when the drs. at Mayo reduced my prednisone dose, the symptoms returned.  It took me a long time to get off of it completely but I finally did.  And, guess what, the sarcoid symptoms returned within 6 weeks.  They tried me on Plaquenil and it had no effect on it either.  I am a nurse and decided that I was not going to go on the other drugs like Methotrexate, etc. because of the very harmful side effects. 

    So, I decided that the MP was the way to go, especially after meeting Dr. Marshall and his team. 

    You must be committed to doing the MP.  As you know, this site is FULL of information.  If you do not commit yourself to doing the protocol as is, you will not reap the benefits and have nothing but disappointments.  I am halfway through phase I and already, I have more energy, I look better, my lungs remain clear, I have not had any more progression of the rash other than 3 spots which this time, disappeared within 3 days.  My diabetes is good, sleep is good, heart is good.  And I smile, and I feel hopeful. 

    My life is important to me and I want to live to be an old woman.  If I had stayed on prednisone, that would not happen.  Like I said, I am a nurse, I have seen the devasting effects of prednisone.   The drs I have told me to GO FOR IT, because they know that prednisone, etc. is NOT the answer.

    June 2006:
    I have a Dupuytren's contracture on my index finger.  One amazing thing I noticed after my FIRST dose of the new med is that the pain was almost completely gone and my finger which is normally bent, was able to be straightend out completely.  My husband and I stared at this finger for almost 20 minutes before we turned the lights off to go to sleep!  I could bend and straighten it without any problem.  I could not straighten it out at all before.  This finger has been like this since last year and before the MP was started.  I am now fascinated and may be able to cancel the surgeon's appt. and just give this more time as I have just begun Phase 2.    The mino did not affect it, it was after I added the the next antibiotic.  This protocol continues to amaze me!

    May 2008:
    I have had a history of Dupuytren's contracture.  In fact, I have a very long history of trigger finger problems from diabetes, Dequervain's and carpal tunnel. 

    I am now in phase 3 and have been on MP for 2.5 years.  I did have 1 prednisone shot in my finger but that was a very long time ago.  As I have progressed on MP I have no pain in my finger anymore and it is totally functional.  No stiffness either.  Even my erythema in my palms has dramatically improved. 

    It is easier to be further along on MP and look back.  You realize that if you are patient, things will go away, it REALLY is true.  I avoided any more surgeries.  Even my old scars from previous surgeries did some funny things earlier in ph 2 but again, all of it has gone.  And did not last long.  Keep getting things monitored but from what I've been through, carefully waiting and watching prevented me from a whole lot of misery.  Good luck!

    debbie y.:D
    see also DebbieY 44 years of Diabetes
    debbie y ready for ph 3
    ____________________
    Debbie Y: Ph1=2/2/06 SARC lungs,skin,3/04, D.M.1 -insulin pump, celiac sprue, IgA deficient, thyroid, MVP, 2/06 25D, less than 7, 1,25-29, ACE still high. Wearing NOIRS Beni 40mg q8h mino 50mg qod

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     Posted: Mon Sep 11th, 2006 17:43
    wytnez: Sarcoidosis: living through the experience of recovering my health myself. 


    Apr 8th, 2006: I made it through the leadership retreat and I am so glad I went.  I had a great time. 

    Though we did have all day seminars, it was still a great experience.    We had a great time.  I had one glass of red wine.  No ill affects. 

    And I was exposed to the sun walking from my lodge to the conference hall and to the dining hall.  I didn't wear my Noirs at all inside.  I slept like a rock.  No aches or pains, very minimal cloggy feeling and no wheezing. (shrink lymph nodes shrink!)

    My peers were so sweet.  I have been working with the majority of them for almost seven years now and they all said that it was so nice to be able to see my face and to see me look so pretty and peaceful. (smile).

    Today I am having no ill affects from the sunlight exposure.  I did have a oatmeal cookie and a very small piece of italian cream cake to celebrate the quality management directors birthday and no ill affects.  

    I was amazed.  Initally I was worried about trying to go without the Noirs inside and getting some sun exposure since we were spending the night there.  I now have proof that the MP works.  Not just seeing other people get well from being on it but living through the experience of recovering my health myself. 

    So all in all, the last two days went very well.  Happy MPing. 


    Saj 

    ADD: Jun 11th, 2006: The sky is the limit.  Thanks MP!!

    I have had some good energy since beginning this abx combo.  Still pluggin along.  Still unpacking and getting things organized (as best as possible).  We have painted almost every room and now the last two rooms left to paint are the living room and kitchen.  I have been hangin good.  My husband even told me that I sound so much better.  My breathing is better.  We bought a treadmill and I plan to start using that tomorrow.   

    I feel like my symptoms are resolving.  There are times when I don't have that cloggy feeling and when I take a deep deep breath in I don't hear that crackly sound.  That lets me know that something is being cleared.
    I do feel blessed each time I inhale and I don't hear that crackly sound.  And now when I cough it's not that wet sounding cough.  And it feel deeper, like I can get a good cough.

    Activities: When we were moving I was carrying boxes back and forth and I didn't miss a beat.  Both days I had so much energy it was unbelievable.  After work we have been painting and I have felt great!! This weekend I was up at 7am ready to get going.  I am so excited for the future.   I have decided to go back to school to get my degree in healthcare admin.  Will start courses at the end of August.  The sky is the limit.  Thanks MP!!

    ADD: Sep 11th, 2006:
    I am so glad that I didn't listen to my lung doctor and go on steroids.
    -I am seeing so many improvements in my breathing.
    -And my over all health for that matter.
    -My hair is so long and thick and my nails are stronger and longer and
    -the list keeps going on and on.

    I am coming up on my 2 year anniversary in about 4 months and I will stick with the MP for life if I have to.

    Nov 2006:
    - now even though I am I.Ping, when I breath in, no wheeze. Yeee ha!!!! 
    -MP Doctor commented on how fresh I looked and also on my hair.  It is getting really long. 

    I am so happy that Trevor is alive and willing to share his wealth of knowledge to help us recover. And it gets better and better each day. see wytnez here.

    -My symptoms are getting so much better that I am very impressed. 

    January 2007:
    I am better and better everyday.  Energy is good, breathing is better and better, still having bouts of depression from time to time but that goes with the territory.  That gets better as the symptoms decrease.

    Saj
    _______________
    Wytnez Saj: sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7

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     Posted: Mon Sep 11th, 2006 17:57
    Guss Wilkinson:  Sarcoidosis Update

    Apr 17th, 2006 wrote:
    Hi All
    The following is an article that I wrote for my own website - for those of you that might be interested in reading our whole story and progress on the MP, you are welcome to visit my site on
    http://www.bugeikan.com - scroll down in the table of contents to the link that points at Sarcoidosis.

    Hi All

    Time for an update...when I wrote last, I informed you that I had re-started at the beginning of the three ABX combo at full strength. I also reported that I had started to herx again quite strongly.

    I am still on that first combination and I am still herxing. And, the herx is still quite strong. The symptoms of this herx are as follows:

    • Very runny sinuses
    • A continuous cough that is very phlegmy
    • Occasional short term memory problems
    • Increased intolerance to exercise
    • Occasional black moods
    • Back ache
    Having said that I have an intolerance to exercise, I am still running our Martial Arts Club but my ability to join in and lead a full warm up is very hit and miss.

    I would be lying if I said that I am not disappointed that the herx has returned - it would seem that the recovery time is going to be longer than I anticipated.

    Trevor Marshall explained the probable reasons for the return of my herx: the myco-bacteria that reside in the tissues and are not dealt with by the body's immune system become encapsulated as fibrosis. As the immune system returns to normal through the Marshall Protocol, the fibrosis starts to become reabsorbed by the body, thus exposing the previously encapsulated colonies of bacteria to the anti-biotic combinations - and, therefore, the herx returns.

    This is confirmed in my mind by the fact that at the end of the 10-day antibiotic cycle, the herx more or less vanishes and I feel fine, only to return shortly after the beginning of the next cycle.

    So what this actually means is that I really am cleaning up the residual bacteria and my cure is getting closer with every cycle. This pleases me in a way as the last thing I want is to falsely and prematurely believe that I am cured, only to have the symptoms of my illness return over time.

    The herx is still not the show stopper that it was when I first started.

    Also, I think that a mistake that I have made previously is that I was in too much of a hurry to go on to the next antibiotic combination as soon as herx was eliminated. I should have pressed on with the same combinations for a couple of months after the cessation of herx to make sure that I could not have teased out more herx from the combination - I am very sure now that I could have.

    So my advice to people on the Marshall Protocol is not to be in too much a hurry...don't change combinations too quickly.

    I have revised my time line for the protocol to about 3 - 5 years. Don't be daunted by this - the anecdotal evidence of others on the protocol agrees with my own experience:

    • After 3-months, you can expect a significant improvement in symptoms
    • After 12-months a feeling of normality becomes evident
    • After 24-months, you can expect to be feeling pretty good and far more energetic
    • At 30-months now, I feel that herx is not stopping me from doing anything - I can even enjoy long periods in the sun and the occasional fish dish without repercussions.
    Life is pretty good!

    Thanks again everyone – stay safe and be happy!

    Cheers

    Guss

    see further
    Guss Wilkinson Psoriasis
    Guss Wilkinson 3 years progress
    _________________
    Guss: Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. (Started MP: Oct 2003 - D25...31ng/ml, 1-25D...76 pg/ml), Phase III since July 2004; BP 100/60. Feeling pretty good!

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 17:59
    Sam shamutooth:  MCS CFS IBS I took a mini abx vacation last week due to Family illness. It was a very encouraging experience.

    Apr 19th, 2006: This was my first time in NYC, and in the past I probably would have wigged out, but this time was different. My symptoms just vanished, W/O the abx.

    I didn't have any sensitivity to smell, no brain fog,  lots of energy, I even slept very well in the lobbies at the hospitals (only about 3-4 hours per night, for 3 nights). It was a very encouraging experience.

    When I resumed the abx yesterday, my symptoms came roaring back with the herx. I'm still on 3 abx, and probably will be for a long while; I'll be patient before jumping into other Phase 3 combos.
    Sam

    see also Sam MCS Insomnia post
    ____________________
    Sam: MCS CFS IBS,insomnia,anxiety,depression,started Doxy July'04, MP Sept. 04; Benicar 40mg 3/day; Phase 2 started 2/2/05; 6/28/05 D results 25D=29,125D=47;11/13/05 25D=10

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 18:02
    grace: CFS Counting Improvements.... being able to do things..

    Apr 20th, 2006: I started PH 2 july 05 and will take the full year to get through. I am still herxing well enough, but am now able to enjoy some of the benefit of the cost, of past herxing.

    The last few weeks I seem to have broken through a barrier,or the scale of returning health has tipped more in my favour-hard to explain:D. Sure I still crash when I have done too much for this level of returned health:X.This is something that I have had to learn all the time on MP;).

    *Muscles in my thighs are improving.
    *The need to take panadol(tylenol) has really decreased.
    *Energy and strength all improving. 
    *Able to do more and rest less.
    *One of the really interesting improvement is the ability to handle any adrenalin/stress. I notice this when I  hired some new scary movies.

    1. I wanted to watch them.:shock:
    2. I was able to go hire them:D
    3 Really enjoyed them.:dude:
    4 Wasn't until the next day that I realise what had really happen-with me:? not  the movies-I was able to follow the plots etc.

    It is hard to explain the return to be able to do things. They are small but added up, are huge. You just find yourself naturally unconsciously doing them until it become the norm, and then you expect to be able to do more.

    Thanks to all the MP team

    Grace

    see further
    Grace: Now - I never lay on the couch or recline: March 07
    Grace improvements
    Grace All the things I can do
    Grace Muscle wasting Muscles regained and healing
    ____________________
    Grace: CFS oct04 25D=26 1,25D=48 feb05D=22 1,25D=52 Jun05D=9,aug06 25D=9 D1,25=48,feb06 D25=10,D1,25=41 NoIR samitriptyline/ MP Feb05 Beni Q6H/ Mino15MAR/100mg Mino QOD/Phase 2 7JULY

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 18:05
    Lee: becoming ill... and How I am recovering my Health... The MP has got me on my feet.

    Apr 27th, 2006: Just in case anyone is interested I was in perfect health until a brown recluse spider bite in 1986.   This resulted all sorts of maladies from the bite that  began with a small wound and that grew huge and refused to heal .... kidney infections and bleeding!    I had huge swollen glands, sore throats and arthitis. Soon after I was diagnosed with the highest titers of the virus' responsible for EBV and then Lupus!!! 

     After spending several years experimenting with different antibiotics I managed to have a negative ANA test.   I shied away from antivirals as they made me feel worse?!  Maybe my immune sytem kicked in ....Then as I felt better in the late 90's I started  traveling abroad and remarried a man with a virus' load.  Within a year I was bedfast and Dx with Sarc!!!  

    The MP has got me on my feet and and I am hopeful for a complete resolve one day .....:dude:  Lee
    ____________________
    Lee: 1986Lyme /dx/ spider-bite/ 1992ANA-Lupus/ w Hashimotos 2000Ankylo-spond dx Pulmon.SARC w/Lofgrens, Hilar Lymph. Biops5/6/05 necrobiotic granul/dxR/A/Lupus VitD-2.13 Ph1-2/05w Benicar. 4/18 PH2+100mino synthroid

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 18:08
    Mkap2nd: chronic neuro tick illnesses: Physical and Emotional improvements... At the 1 year mark I am told my hair looks great, my skin color is good, and I look strong and happy.

    Apr 30th, 2006: Hi continuing the fight Congrats to all--

    I am now up to 3 antibiotics. 
    -My energy level has increased. I have planted a garden and have done some spring cleaning. A couple of hours of physical work are good. I even desire to walk again.
    My skin is very dry too. Some chest tightening again. Eyes burning, some photosensitivity, and trouble finding words.
    -BUT there is a peace in me a quietude that I enjoy. I actually enjoy the quiet now and darkness is welcome.

    -I really believe that the antibiotics are cleaning out my brain and allowing me a peacefulness I had not had. It has allowed me to regain complete memories of my childhood which had me tortured and at least now I know why I was tortured and repeating patterns. I like myself now.

    The Lyme disease had paralyzed my immune system and I had no hope of healing myself emotionally until this progress had occurred. I am now on a path of healing that means bringing only healthy people in and doing what makes me feel good. I do not know if anyone understands this but The nightmare has ended and now it is just patience that is required to get through the protocol.

    The sun change in April has required some juggling to be sure the covering is good going to work and back. If my body heats up, it causes more flare up. Double glasses are necessary until 6:00pm, then I can go out with 1 pair and without looking like a freak. Otherwise, I continue the freak show.

    At the 1 year mark that is my status. I am told my hair looks great, my skin color is good, and I look strong and happy. Go figure.

    January 2007:
    Have continued through the tunnel and am getting to a point of some really good hours. Am able to do many things. Just when I thought the herxing would get the better of me I got to relief. Meds packing a punch with my nervous system and glasses getting way too dark so pushing through to moments of smiles and laughter. There are moments of complete space cadet brain but they pass.

    June 2007:
    Yes my health has improved.  Overall the symptoms are less than they were in severity.  I am stronger.  Still have space outs and forgetfulness.  Still have lapses of clarity.  It doesn't scare me us much though- I chuckle instead.  Still have physical pain that can make a day hard.  BUT I am smiling now more and laughing more.  I hear myself singing.  I know I must be getting better as people are telling me I am. If they notice then IT MUST BE SO.

    Funny- someone was actually shocked at how old I am.  They say my face doesn't show it. 

    ____________________
    Marisa: chronic neuro tick illnesses, asthma, 125D/27.5 |25D/8.3 | D avoid 4/10/05| Pos proteins in CSF Pos tau protein,  Noir glasses,  BENI40/4-5hrs| Phase 3

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 18:11
    ShrnHml:  CFS MCS EBV MVP TMJ PCOS 28 yrs. Vast Improvements noticable after a break from herxing:

    May 2nd, 2006: My break has lasted 70+ days………way longer than I ever anticipated……it has been an eye-opening experience.  I actually got to the point of feeling great, and the last two weeks were the best of all…..BETTER THAN ANY TIME IN THE LAST 25 YEARS. I did not need naps, and could go literally all day with just a 45 minute rest in the afternoon. I had the exhilarating feeling of dancing or flying. It felt like time travel to a past where I was well and energetic.

    I not only had energy, I had the “inert precursor”, motivation. I did not accomplish all that I had planned; but with the help of my headlamp I did get a minimum garden planted. This will be a source of comfort through the next months of somulence (a made up word), fatigue and stupefaction.  

    The hoarseness left my voice, and I was able to talk without constantly trying to clear my throat. I didn’t even recognize myself when I spoke. 

    I was able to read from first thing in the morning without waiting an hour for my eyes to clear. I was able to do more than one thing at a time. My mind was sharp enough for me to file papers. (Previously, it was impossible for me to figure out what went where.) 

    Sharon

    January 2007: on 2 week break:
    This break is unlike my last one in that I started feeling good right away. Amazing and wonderful! I even listened to some music tonight and played conductor in front of the stereo with all the energy of Leonard Bernstein. Of course I could not do it for long, but it was exhilarating for five minutes. 

    I have delayed reporting a big change until I was sure. About a month ago my pelvic cysts went away. Vanished! I have had them for over 40 years. They caused uncomfortable pressure, bloating, and a change in size of clothes. 

    Over the years my ovaries were removed (three years in between operations) along with the cysts. But the cysts always came back. I would have occasional periods of becoming very thirsty, drinking lots of water, and the cysts would increase in size. Then there were periods of not wanting to drink anything, copious urination, and the cysts would decrease in size. Now they are gone, and I am back to normal size. No discomfort; no bloating. Clothes are comfortable once more. 

    Three cheers for the MP!!!             ...........Sharon

    Sharon: knees improve
    ____________________
    Sharon: CFS/MCS/EBV/MVP/TMJ/PCOS 28 yrs. Neuro-cognitive deficit, endocrine imblance, muscle weakness. START DATES: 11/04 D-avoid & Noirs, 3/05 Benicar, 4/13 mino25mgQ0D. D-tests 10/05 25=44/125=62; 3/06 25=7/125=22. Other meds: Effexor 50mgQ24H. Mod Ph2

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     Posted: Mon Sep 11th, 2006 18:17
    patrickburke: Sarcoidosis:  I have compiled a list of improvements to my health since the MP took over my life.  I am really picking up, I cannot remember the last time I got in from work and dropped on the couch exhausted like I used to. The MP is totally amazing.


    May.04 Dx sarcoid
    Jun.04 Avoiding D and light BIG response. Refused steroids.
    7.Nov.04 Pulsed Mino only
    1.May.05 Phase 1 Mino + Benicar

    May 2nd, 2006 wrote:
    They are short descriptions but when you consider that I spent seven years at the ENT clinic before losing my tonsils and one year of exhaustive tests just on my digestive system (x rays, endoscopies, biopsies, ultrasound, barium meals etc etc) then things are put into perspective.

    This is not the full list.

    Improvements so far.

    My chest x-rays are now clear and I have been discharged by the consultant pulmonologist.(The biggie :)) 

    Itching scalp with red "spots". Gone.
    Painful hair follicles (when combing) on my head and face (when shaving). Gone.
    Sinus congestion and runny nose. Gone.
    Advancing and bleeding gums with gum disease. Gone.
    Persistent dry mouth. Gone.
    Persistent sore throat. Gone.
    Difficulty swallowing food. Gone.
    Frozen left shoulder. Almost gone.
    Great difficulty breathing. Gone.
    Sensation of chest pressure. Almost gone.
    Persistent cough. Gone.
    Persistent abdominal pain (hospitalised with suspected appendicitis once). Gone.
    IBS linked to the above including pain, bloating, gas (especially in the morning) etc. Gone.
    Persistent back pain. Almost gone.
    Suspected developing spondylosis. Almost gone. Posture improving rapidly.
    Sore and tender finger nails. Gone.
    Fordyce spots on lips. Fading.
    Itching skin on back, arms and legs. Gone.
    Profuse sweating. Gone.
    Cramps in legs at night. Gone.
    Life shattering insomnia. Gone.
    Stiff ankles and feet. Gone.
    Painful heels. Gone.
    Painful great toes. Gone.
    Sore knees. Greatly improved.
    EM rash on feet. Gone.
    Soul destroying brain fog and no concentration. Greatly improved.
    Memory. Greatly improved.
    Stuttering and slurred speech. Gone.
    Poor balance. Greatly improved.
    Dizziness. Greatly improved.
    Tinnitus. Greatly improved.

    Phew, thats about it.

    May 6th, 2006: I am very busy at work and have even had some indoor daylight exposure whilst working today.

    I am still covered up, wearing Noirs and I upped the Benicar to 40mg q4h. But light just is not having the same devastating effect on me anymore :). Yes it took its toll and gave me flares in my knees (which is awesome as now I am sure they will heal or at least improve too) both sides of my ribs (which is also awesome) and even made me a little dizzy and weak for a moment or two. But these effects are minor now and I recovered very quickly. My skin seems unaffected by artificial light now.

    I have noticed over the last two months that I am really picking up, I cannot remember the last time I got in from work and dropped on the couch exhausted like I used to.

    The MP is totally amazing.

    Take care all.

    Sep 8th, 2006:
    -My upper spine is creaking, cracking and is noticeably straighter now than it was even a few months ago.
    -I have superb range of motion in both shoulders now. 

    Someone asked me the other day if I had taken up bodybuilding :shock: (I wish) I think that is a result of my new straighter spine and correspondingly better posture.

    Sep 28th, 2006:
    From previously writing everything slowly in block capitals. This week I suddenly realised that I could write joined up handwriting properly again.
    I also found myself running/striding up some stairs without even thinking about it :shock: 

    My light sensitivity is still variable but always steadily lessening.

    My physical strength is returning without any exercise whatsoever which I find quite amazing. I performed an unexpected feat of strength the other day when I braced myself to try and tear apart some tough plastic wrapping, my arms flew apart as it ripped like a tissue, I almost knocked someone behind me over LOL. 

    I can feel my stomach muscles firming up. Awesome!! 

    My short term memory is still steadily improving.

    Take care all.
    PS Thanks to the team for helping me to achieve the all of the above :).

    January 2007:
    I can notice some marked improvements in my health now.
    :The insomnia IP that had been plaguing me for some time is gone and I am now sleeping like a log and waking up earlier and feeling fully refreshed, which for me is a minor miracle that I cannot overstate.
    :My digestive system is great also, and I can now comfortably eat bread again which was one of the worst things for my supposed IBS/food intolerance, which is a great step back to normality.

    :The cracking sternum and chest pressure have also subsided to a very comfortable level too.
    :I am noticing less pain and crunching in my knees on the good days :).
    :Oh yes and the lip spots are fading away on my lower lip which is in an almost constant state of peeling/chapping.

    All in all I am still making good noticeable progress and am very pleased with the results to say the least. I have had some very encouraging glimpses of what I know is to come :D.


    February 2007:
    This evening I took my poor, dear, neglected daughter clothes shopping :). I did not wear Noirs and was OK, only one shop with very bright lights bothered me :). I feel as though my light sensitivity which was once so extreme, even by MP standards, is finally drawing to an end :) I love it. I don't know how long it will take to completely vanish but I can wait, it's started that's the main thing. It's worth noting that prior to the MP I could not stand much shopping as I always used to get terrible lower back ache, I never realised that it was the lights causing that effect.

    Last night me and my one last good friend friend who has stood by me through all of this went out for a beer, we had a great time and as we walked into town I felt so good that I ran, yes I was running like a big kid, through the snow LOL, I felt like I could have run for some time but started to get some sternum twinging so had to stop :X. Still not bad for someone who used to get out of breath talking.

    I get the feeling that my lips will eventually clear. There is also still the right rib IP which is almost gone now on a good day but quite noticeable on a bad day.

    My legs are getting some pounding at times but slowly my painful knees seem to be healing which amazes me as they have hurt since I was about 14.

    All in all, superb progress.

    February 2007:
    I will have been on Phase Three for 1 year in 2 weeks time.

    I had a moment of madness on Friday night and had fish 'n' chips for my tea :X that is the first meal that I have eaten with any known "D" since my very earliest MP days, after I had devoured it (it tasted delicious LOL) I sat back and felt awful, waiting for the after effects to kick in.....the struggling to breath etc :X. But NOTHING happened. NOTHING at all :D. I won't be repeating the experiment in the near future but it showed a big change in my body's metabolism.

    I reported some time ago that I could now lay on my back in bed due to reduced chest pressure well now I am finding myself waking up laying on my stomach :D which is totally amazing as I have not been able to breath in that position for many years.

    Feb 2007:
    I am also getting more of an urge to do some exercise and have done 5 very easy minutes on a cycling machine tonight and a few of the inclined press ups which help to crack my spine back into place. I will see how long this urge lasts :?. I will never force myself to exercise.

    Over the last couple of weeks almost everyone (literally) who sees me has been looking at me strangely and asking what has changed about me :?. I think its the loosing fat/water effect and my generally better posture and higher energy level and spirit :D. If only they knew what we know LOLOL some do of course

    March 2007:
    I have felt pretty good and even got home from work, ran some errands, did some jobs and did some more exercises :shock: I am still going strong as I type and its 22.50 over here I was up at 7.00. I did 15 minutes on the exercise bike, some inclined press ups, some sit ups and some stretches.

    My spine and right ribs are still crackling and at last the right rib/side "stiffness" is starting to fade :).

    Oh, I have also been getting some new IP creeping in every now and again over these last few weeks, a new neuro IP..........euphoria..........I like this one :D.

    April 2007:
    The last time I saw my Opthalmologist he remarked that my eyes were in incredibly good condition, he said it several times.

    I am now three days into my third year on th MP :D.

    see also
    PatrickBurke: return to Life
    PatrickBurke: counting my blessings
    ____________________
    Pat. Pulmonary Sarcoidosis dx 5/04; No D tests; Avoiding D/light+noirs since 6/04; Benicar 40mg q6h; Mino 100mg q48h; abx 3.

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 18:29
    Betty C: Sarcoidosis: I am an early adopter, and the oldest "kid on the block", being now 81 years of age and for the most part enjoying my lifestyle of retirement of many years. 
     

    May 4th, 2006 wrote: Herxing is not a barrel of laughs for anyone and in those early days of MP we did not have the advantage of knowing how to moderate our herx.  I can well remember my first attempt left me prostrate on settee all day, not being able to even make a cup of coffee.  Lucky for me my husband understood (*recipe for a happy marriage is friendly altercations!) .    

    Julia's replies are always worth noting and are "gems" of saying it as it is, and keep going, with faith, trust and the knowledge that we are getting better.  Trevor has also expressed to us that in Phase 3, even tho we are still herxing, we will suddenly realize we feel well, and the sun is shining out there and there is a different ball game awaiting our patient slog.  We can still be taking our abx, still herxing, but life will be lighter and we can stop and smell the roses.   

    I have always done the latter.  To me, that is COMMON SENSE.  When taking those little hols, it gives us a taste of how far we have come.  When taking these times off, I always keep up the tid Benicar (Votum).  It has, on hols, given me quick relief on 2 occasions when I had done the wrong thing that produced a bad effect on my body.  It sort of got me out of trouble pronto.  I carry some Votum in my purse wherever I go, just in case. 

    On my print-out of Hypervitaminosis D symptoms, I have noted 76 items, 62 of which I ticked as sign of pertaining to me, and all have now been cross ticked, signifying some or all extent of relief after herx. 

    These days the creative use of the antibiotics, to me, seems to be old man herx just re-hashing all the old left-over bugs hiding away.  So relief of so many of the ticked items seems to me, to constitute success.  Better than ending up in a wheelchair, which is how I once envisaged my future. 

    I take time off in short spurts, to suit my lifestyle, as at our vast age, it is only fair that I am considerate and not make my husband suffer for me needing a dark cavern. 

    Our home is easy to regulate light, and altho we mediate this regulation when others come to visit, we mostly live in a cosy sort of dimmished glow, even tho our living areas are "open living".  In early days of sarc I would make arrangements which I could not fulfill, as couldn't get off the bed because of severe fatigue.  It would happen about 24 hrs after I had been out enjoying myself, unprotected from light rays.  In summer I go about the house in sleeveless garments, but all is ready for cover up when I go outdoors. 

    My sunnies fit closely everywhere on face..one set for purse, one  in laundry for hanging out washing and a third set being extra delicate and not fiercely closed in for restaurants.  At these times we choose for me, back to windows and light...dark corners if possible and I never get to enjoy the lovely view of our Pt Phillip Bay...  So, I still need sunglasses, hats or colourful sunvisors.  (even have one of these to wear watching TV.)

    Lately I am amazed at my increase in energy..thought those days gone forever.  Also cannot get over my quickness of movement...thought those days gone to glory..could always blame old age for this...but hey, I haven't run since about 72yrs old, but to feel this quick, right now, must be an MP plus. 

        Hopefully my sense of humour is still intact, along with the knowledge that my mind seems to be clear and working o.k.  So, altho I am still herxing and it is mild right now, I know I shall get a shovel full of herx when I return to include the other abx.  

    All I can say is " think about the renewed energy when it comes; the totally different attitude to it all, when that comes, and those things are the signs of being able to continue to live a normal life, even if still taking sensible precautions.

    Cheers and God Bless.    Betty C
    ____________________
    dx Sarc-2 skin biop.3/99; Prednisolone 3 1/2yrs; steroid myopathy 15mths; 8/02=1,25D=36.19; 25D= 14; 3/04 1,25D=15; 25D=14.4; 7/05 1,25D= 25; 25D= 9.76; Votum tid; MP/phase1,Nov'02; phase2,Oct'03; phase3,June'04. Mild herxing.

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     Posted: Mon Sep 11th, 2006 18:38
    jrfoutin: Sarcoidosis:  handling increased workload.


    May 6th, 2006: MP 271 days
    One of the most interesting things that just has happened over the last couple of days is a subtle change in eye sensitivity to light. I just took the darkest blankets and towels down (yes, blankets and thick towels!) off the darker draped windows in my cave so I can see. Wonder how I saw in that before? It's still plenty dark in the cave.

    With the little increase in light, I also noticed cobwebs, dust, and etc. and cleaned for about 2 hours this morning.
    How different from a year ago at this time when I paid someone to come and clean once a week because I was just too sick (Before MP meds, while I was trying to find a doctor). That was a very bleak time for me now I look back on it. 

    The last couple of days I also designed and sewed my son a uniform for his space center birthday celebration and had energy enough to really zing into work tasks yesterday.

    This was after having a pretty loaded schedule for the last week that reduced my 8 hours mandate for quite a few nights in a row.

    Long post, but short version reads: "WOW, THE MP WORKS!"

    see also
    JRFoutin Janet: brain fog cleared and I won my life back.
    JRFoutin Milestone Markers Sarc-Th1, Notes from Phase II and III
    ____________________
    Janet
    : Dec99:Sarc lung, Sep00:No Pred, Mar05:No D/light;+NoIRs, 8/09:125D=61|25D=12;Beni40Q8H, 8/18:Beni40Q6H, 8/23:M25, 8/31:M50, 9/14:M75, 9/15:Beni40Q8H, 9/26:M100, 10/6:ModPII, 12/31-PII avatarhelp

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 18:45
    scooker48 Sherry wrote: I wish to document some healing while on the MP.

    May 8th, 2006: Phase 3.. 

    *In addition to the headaches vanishing upon beginning the MP,
    *and my tremor disappearing with its associated shame of my handwriting, my penmanship is now almost as good as a College student. I now write notes to my patrons, instead of use the typewriter. Because I do not use the typewriter and therefore less electricity, requiring less fossil fuel to be burned, you'd think I'm nuts. *My concentration level is improving, and I've been able to "dig in" and catalog the material on cycle chemistry of boilers. The reader might further conclude this is a qualification for being neurotic,
    *but I will balance it out that I've actually read a few books of late. Pleasure reading. No, not the heavy stuff of Keats or Shakespeare, but "Passage Juneau" is a wonderful non-fiction title.

    *Next I document that I am able to enjoy, and NOT have any noticiable effects, from drinking 1 or even 2 cups of coffee in the morning. I loved the drink as a college student; it was a passion. As I aged into my mid-30's, I would grow testy, emotional, and sorta nuts after drinking coffee. So...I gave it up in favor of tea. "Coffee is too harsh" I would say to my friends. Now, I can drink it with a tablespoon of half & half and I'm very pleased.
    *Life is starting to get really good.

    *I am not bushed with fatigue as in pre MP days.

    June 2007:
    I will document a recovery milestone:  I am reading again.  I loved to read as a child, and devoured books in college.  Then, someplace along the way, I couldn't concentrate in the evenings for recreation reading.  About all I could read  would be the feature articles in the Wall Street Journal.  That was okay, but I sorely missed being able to read.  Ah, the life of the mind.  Then the fog grew denser, and thicker.  As a matter of fact, I would of been a good candidate for brain fog research.  "Look at that, her brain is the foggiest place in the continental United States.  Can't see a darned thing." 

    I've been on the full MP 26 months, and I have read two books in the last week.   My professional reading has improved also:  I can remember reading some dry fact about methane hydrates from a few months back.  I'm looking forward to getting home, making myself comfortable, and reading. 

    I have no doubt the MP is responsible for this improvement in my mental clarity.

    Sherry

    October 07:
    I had a wonderful few days traveling on the Alaskan ferry system, and exploring Kodiak Island.  I felt normal, and far less light sensitive.....

    and drove from the Sacramento Valley to the Bay Area late Saturday afternoon with the 40% NoIRs.  I am in awe of COLOR; the green of the lawns and fields, the blue/violet of the hills as the sun sets, and the wide blue sky.  It is an amazing sensation after years of the heavy NoIRs.  Wow.
    ..... and...
    I feel very good this morning; all my senses seem to be heightened.  I feel a serenity and happiness with my life and situation right now. 

    I am occasionally walking the hallways at work without NoIRs, but still use them infront of the computer. 

    April 2008: on antibiotics break:
    I feel great!  It took longer than 6 weeks from the ABX to work out of my tissues, or maybe I decided to stop thinking about it after about 7 weeks.  It is hard to be objective.  I saw my MP doctor yesterday and mentioned this overall wellness, and she asked if I was "high energy" before in my life.  That was certainly true until October 1988 when I had the diagnosis of "cat scratch disease" and a resulting lab slip of necrotizing granulomas.  Sadly, mainstream medicine did not inform me of the consequences of this damned disease or offer any help, but thanks to the MP I have hope of regaining my life.

    As an example of high energy
    , last Thursday I worked all day at my desk job, then rode the bicycle 22 miles to get a kitchen tool; a lemon squeezer.  I arrived home about 7:00 p.m. and made dinner, cleaned up the kitchen, and then made 6 lemon merangue pies until midnight for the people at work. 

    I am committed to the science and the MP. One of the greatest fans of The Marshall Protocol and ARF.

    April 2008:
    Three years ago I had been given a Sarcoidosis diagnosis based upon chest x-ray, CT Scan, lab work, and gallium scan to the kidney (which I would NEVER consult to today).  They wanted a biopsy.

    The biopsy they suggested was an invasive procedure, and would not of helped me regain my health one iota.  It would of further weakened my system.  I will be forever grateful to the ARF and MP for their counsel.

    I have been on the MP more than 36 months. My Bone Mineral Density Exam has showed far less bone loss while on the MP. 

    June 08:
    I already sleep so much better than pre MP; it's a vast improvement.  My bone mineral density exam showed far less bone loss, and in April 2008 the liver tests from the lab came back NORMAL.  Hooray for MP!
    ____________________
    Sherry: Dx 12/04; Sarcoid liver spleen. 2/2/05: VitD 25/VitD125 62. 3/30/05 VitD 28/ VitD125 48. 4/30/05 VitD25 26/ACE 128. MP2 6/20/05. 8/6/05 VitD25 23/ACE 96. 11/4/05 VitD25 13 and D1,25 21.

    Aussie Barb
    member
     

    Joined: Sun Sep 10th, 2006
    Location:  
    Posts: 386
    Status:  Offline
     Posted: Mon Sep 11th, 2006 18:50
    Robyno: Mother of Matt: LYME symptoms: List of improvements.
    Demise of the TIC

    Matt is continuing on nicely with his modified Phase 2 MP.  

    Reported January 2nd 2006
     
    * nose bleeds have stopped
    * was able to bear to have haircut
    * chest pain has disappeared
    * his tic is starting to feel different and we hope is on the way out. 
    * is starting to read the odd phrase like a label on a box or the time on a clock! 

     
    Reported January 8th 2006 

    * energy levels are increasing slightly
    * he is spending more time out of his room
    * conversation picks up  
    * I am enjoying being able to read to him again and not have him say that he is too tired to listen
    * reading labels and the writing on his T-shirts etc more 
    * constantly telling us the time now that he can read the clock without it hurting too much. out loud of course, so we can see how well he is doing! 
    * He tells us a few times each day that he is getting better so his mood is excellent. 
    * While he is not telling us the time he is admiring his new iPOD speakers
    * eating so much better now.  He said that not having that horrible taste in his mouth any more helps
    * Apparently the metallic taste he had for months has been completely gone for weeks now


    So, while we have a very long way to go, we have come a mile already. 

    Reported February 12th 2006

    * It is interesting that after about his 3rd or 4th dose (at an abx level) we can really see a difference in his energy levels.  He will get up to answer the phone or go to the fridge if he needs anything, things he hasn't done for quite some time. 
    * His normal, strong voice kicks in often as well - he almost seems like he was when he started the Benicar, before he started the antibiotics. 

    * HE has started reading one of his books TO ME, now!  He reads a page at a time without it hurting anymore, so that is real progress. 

    Reported March 26th 2006

    * Matt continues to improve steadily.  This week he noted for the first time that his blurred/double vision of a morning is starting to improve.  Every morning for most of this past year he can't see properly when he wakes up.  Then he goes back to sleep for 45-60 min and when he wakes up again he can see normally.  It is so strange and very predictable (when his vision first began to go blurry it could happen at any time during the day), but now it is definitely starting to improve. 

    * His fatigue is lessening as well and he is still reading well, though he still can't read as much as he would like at any one go.  But that will come.

    Reported April 6th 2006

    Matt is in the middle of his worst herx days after his abx ramp-up, but still pretty cheerful. 

    *  His tic is definitely improving on the inside (ie the sharp pains that produce them have really calmed down a lot) and not as frequent. (by 60%, according to Matt, so the pains that produce the tic have really slowed down). 

    * He can now write pretty well and is working on his school assignment on his better days. 

    * TV is still stuck on 6 minutes (he is watching Carlton's big win last weekend in 6 minute bursts!). 

    *His fatigue is noticeably improved and he spends lots of time on the phone to his friends and a lot less time in his room. 

    It is so lovely to see him getting his life back...

    Reported April 14th 2006

    * A few of Matt's friends called in to see him today and he managed his visitors very well. 

    *Matt started drawing this week so that is something else to add to the list. 

    *He is also sure that his "pulses" (ie tic) are still improving - about 75% better at this stage.  It will be so nice to see the back of those.....

    *Matt has put on a kg in the last two months.

    Reported April 24th 2006

    * Matt and I have spent a bit of time with his English assignment this afternoon, me at the computer and Matt next to me with the book and his notes.  He can last about 20 min or so before saying he needs a break. it is coming along. 

    * Matt has started to write a journal now so that is good practice for his writing skills. 
    * His tic is still improving - today he went for about 20 min without a "pulse", which is a big step forward. 
    * his blurred vision of a morning is still getting better.

    Reported May 2nd 2006

    * His tic still continues to improve and Matt thinks it will be gone for good in a week or so.  I sure hope he is right!  His much less frequent "pulses" are much easier on his head, which is a welcome relief. 
    - He even had one day last week when his background headache felt a bit better - that is a first!

    Reported May 7th 2006

    The exciting news here is that Matt's tic has almost gone!  A couple of weeks ago I wrote in our diary that Matt was excited that he went 15 min without a "pulse", as he calls his tic.  Well, last Thursday he only counted 12 pulses for the entire day, and today the count was down to 6 (and a couple of those were while he was watching his 6 min of TV)!!  So watch this space - once he goes a whole day without a pulse we will tick those off (pardon the pun!) and start celebrating!! 


    Reported May 13th 2006

    It has been a very interesting week, mapping the demise of those horrid "pulses".  It went from 8 last Sunday, to 5 on Monday, 3 on Tuesday to one on Wednesday, and that was on his way to bed in the evening when he was very, very tired.  They have stayed at 1-2 per day since then, but always when Matt has been doing something difficult like watching a little bit of TV or on his way to bed at night.

    So, what the hell, WE HAVE DECLARED THE TIC GONE, FINISHED, KAPUT, WHATEVER.  IT IS NOW TICKED OFF THE SYMPTOM LIST!!!  The odd one or two might keep popping up every now and then, but we have decided that they don't count.

    *Now Matt has been able to determine that his background headache, his other worst symptom, is starting to improve as well.  Not having to put up with those painful pulses will be surely giving his sore head some relief.  So we are on a roll here.

    It is impossible to put into writing just how grateful we are to Trevor and the Board staff (and our MP friends)...........I don't know where we would have been right now without all of you. 

    Reporting May 21st 2006

    * Matt's "pulse" tic count for last week has been just two for the entire week!  and they only happened because Matt was doing something tough like driving in the car. 

    * We all enjoyed our Mothers' Day outing last weekend and no-one gave Matt a second glance.  We were home within an hour and Matt went straight to bed afterwards but he was fine the next day. 

    We have also visited the Hi Fi shop the last two Friday nights.  Matt likes checking out all the lastest electronic devices - junk mail in the flesh, I suppose!  That is another normal thing he can do now even if it is for just 20 min or so. 

    Matt is also asking for some more school work so I am off to school this week to sort out some more work for him. 

    He hasn't made much progress with his Shakespeare play so far but is enjoying keeping a journal (his writing is fine now) and doing a bit of story writing. 

    He can last 15-20 min at tasks like that but that will improve.  It's an awful lot better that where he was at a few months ago.

    reporting June 18th 2006

    *Matt keeps saying that his ever-present headache is definitely improving.  Yesterday he remarked that taking his 6-hr Panadol is actually helping his head now (I suppose that means he has been taking it all this time out of desperation?) so that must be a good sign.  

    *No more pulses/tic this week, either.............they don't even get a mention any more!

    reporting June 26th 2006

    * Matt has completed his English exam so now we are waiting on the results.  He is looking forward to doing more subjects next semester.  It was a wonderful achievement to get even one subject completed in the first semester this year - six months ago I would not have predicted that!

    * Matt looks forward to sitting on the deck each day when it gets dark to get some fresh air.  One night last week I couldn't find him - he was at the back fence talking to the kids next door and their dog.  I don't think the neighbours were getting much of a word in - it was lovely seeing him do kid things again.  It's been a long time....

    We have lots of family visiting at the moment so Matt has lots of company.

    reporting July 2nd 2006

    * Matt said today that his period of blurred vision first thing this morning only lasted 10 min or so, so there's another improvement to report.

    * Matt is extremely pleased with the "A" he received for his English mark this semester.  He figures he can honestly say he received straight A's - I suppose that is true for one out of one??  Next semester will be a bit more of a challenge, but even getting through one subject this semester has been a fantastic achievement.  We are very proud of his efforts.

    * When it gets dark in a little while he is going to walk down to the corner of our street to visit a school friend. 

    Reporting July 10th 2006

    We are still progressing nicely here.  

    Matt's light sensitivity is starting to decrease a little - he has actually noticed how dark his room is now, though he still manages to read in light that I would have trouble finding the book.  He is in great spirits and very much looking forward to his next antibiotic, which he will take for the first time on Thursday.

    Matt only spends about half of his waking hours in bed now. 
    Once his worst herx days are behind him he feels more like doing some school work. 

    reported: Jul 17th, 2006
    Beginning Phase Two: I have been looking back over the records trying to map out when each of Matt's symptoms has dissappeared:

    -3 weeks into Ph. 1 - nose bleeds stopped 
    -10 days into Mod Ph2 (2 mo into MP) - was able to have a haircut 
    -by the end of Mod Ph2 (5 mo into MP) -  was reading again
    -6 weeks into Mod 3 abx (6 mo into MP) - was writing again
    -and noticed that his tic was starting to become less frequent
    -3 mo into Mod 3 abx (8 mo into MP) - we declared his tic gone
    -5 mo into Mod 3 abx (10 mo into MP) - blurred / double vision gone (touch wood!)

    July23, 2006
    has somehow turned a corner:
    Started exercising with weights
    invited a friend over
    Headache is starting to lift a little

    Jul 30th, 2006
    muscle tone coming back
    kicked the footy
    computer first time
    has grown 3 cm, gained 1 kg in 3 months

    Aug 6th, 2006
    light sensitivity improving noticeably
    sleeping much better
    headache continues to improve.
    doing more exercise and schoolwork

    Aug 14th, 2006
    energy levels have risen rather dramatically. says he is "full of beans". unpacked the car for me!  
    staying up longer of an evening as well, going to bed ~8.30 rather than 7.30-8.00.  doing his exercises every day
    some school work as well, even on his herx days.  
    muscles are developing nicely, according to Matt.
    His TV watching is up to about half an hour. 
    This week he will have a tutor for the first time.

    Aug 25th, 2006
    arranged his own Birthday party
    more energy, playing table tennis with himself
    head is nowhere near as bad as it was
    doing more school work

    1 year on MP: Sep 12th, 2006
    Matt said that a year ago he would listen to about 11 hours of audio books in a day (ie in bed) and now it's down to about 4 hrs
    - the rest of the time:
    he is doing homework,
    working with his tutor,
    exercising,
    watching TV (he can manage ~ 45 min now),
    messing around on the computer (~ 25 min at a time),
    playing table tennis after dark,
    drawing,
    eating,
    listening to his MP3 player.......
    I'm sure I have missed a few things.  He plans his day in the morning then goes for it.  Of course, on his herx days he takes it a bit easier, but still manages to be up and about for much of the day. He is less fatigued.

    The best news is
    Going to school for a couple of hours on an afternoon next week, when he is not herxing, for the first time in a year.  
    Definitely growing.
    He has cut out one paracetamol tablet and is down to just 2 per day.

    Sep 24th, 2006
    Exercising and watching TV - up to about 1 1/2 hrs TV now.
    Last night was another first in that Matt went to the video shop to hire some DVDs.
    Matt survived his afternoon at school last Wed. lots of extra walking. 
    Matt has also ditched one of his pillows on his bed so that he doesn't have to sit up so much when he sleeps. 

    Oct 1st, 2006
    He spent ~40 min on the computer at school researching a science assignment.
    Matt is also managing about an hour of exercise (not continuous!) on non-herx days now, and this week that has included 60 sit-ups in a row, without stopping!  It wasn't so long ago that he couldn't even lie flat!

    Regards, Robyn

    further improvements: see
    Robyno: Matt 14 yrs: Rickettsia + Lyme symptoms: 1 year on MP. Holiday at the beach. Back to School.
    Matt Happy New Year 2007
    ____________________
    Mum of Matt 14 yrs 40 kg, Rickettsia+Lyme sympt,paracetamol,Lactobac, Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; 16Jun05:1,25D=22, 25D=27,12Sep05:1,25D=30,25D=21, 7Oct05:1,25D=27, 25D=24; 7Dec05:25D=12.4; 5Apr06:25D=10; Ph1:8Oct05; Ph2:3Dec05

    Aussie Barb
    member
     

    Joined: Sun Sep 10th, 2006
    Location:  
    Posts: 386
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     Posted: Mon Sep 11th, 2006 18:54
    Vicki SA: ME CFS I have growing confidence that the MP is giving me improvements (now!) and that I am moving toward wellness.

    May 19th, 2006:  G’day,
    I thought I would start a post here in the Phase 1 Alumni Forum. I commenced the MP Phase 1 on 27/12/05 and had been avoiding sunlight since October 05. I have been ill with ME/CFS since I had glandular fever and viral hepatitis in July 2000.

    I have growing confidence that the MP is giving me improvements (now!) and that I am moving toward wellness.

    Things that have improved:

    Sleep. I started to sleep more deeply quite early in the protocol and this has continued. I now get to sleep much quicker and generally sleep pretty well.

    Muscle Pain. I feel that this is gradually dropping and I can imagine and even hope for a life without this symptom! At first herxing would produce muscle pain similar to overdoing it or a flare of symptoms but now it is more moderate.

    Post Exertional Malaise. I feel that I get fewer consequences from activity now and they don’t last as long. I just don’t seem to have a week of extra symptoms after overdoing it!

    Energy. I feel this is improving and I am getting big ideas of things to do! This hasn’t translated into ‘much’ at present LOL but I did reorganize the camping gear and can now load and unload the dishwasher.

    Brainfog. My mind is getting clearer and I am having better conversations and finding it much easier to connect to people. I have always been a writer, (personal journals and in the past club newsletters etc) and lately have embarked on some songwriting. Early stages but it is so nice to have the inspiration and capability to start on something new!

    Drooped right eye. I am not sure where this fits into things but it is now gone and my eyes are evenly open. I think this is a significant improvement.

    Racing heart beat. This seems to be happening less often.

    Medication & Supplements. Before I started the MP I had stopped Vitamin D things like fish oil and multi vitamins, and things like folate etc. and since I have started I have gradually stopped things. I have weaned the DHEA, Transfer Factor and stopped the zinc supplement. Previous to the MP I struggled to cope without either the Transfer Factor or DHEA.

    Working. I work 3 days a week and have only missed 2 days since I started the MP.

    The journey:
    I have been resting more in Phase 1 and this seems to have changed just recently and I am not resting so much at present. This might be short lived LOL! The time spent horizontal for January to April was averaging between 15 & 15.5 hours/day. The yearly average for 2005 was 14.24 hours/day.

    Nothing I have experienced so far had been as bad as the illness itself and I feel much more in control of what is happening as I choose to increase or decrease the abx and also have options to moderate symptoms if they are too strong.

    Avoiding the light. I haven’t found this part of the protocol very easy at times especially over the Christmas period where visitors linger outside and aren’t keen to come into a stuffy house. As I reached the end of Phase 1, I felt that friends particularly, felt that I was indulging in self limiting beliefs and I had to reassert myself. I already had growing confidence that I was on a much better path for improved health. Now, a little further down the track, as people are starting to see my improvement they are accepting the light restrictions better. Now that we are in Winter here, my life is a lot easier although I don’t expect that I will be able to relax the light restrictions for a good while yet.

    The amazing thing about the MP is that we have things we can adjust to help. You don’t just have to wait and bear the consequences.

    Reporting MP day 194 (8/07/06)

    G’day all,
    I am so encouraged! The herxing seems much lower this cycle and I am ‘popping’ out into feeling so much better.
    It is amazing to have things re-emerging, like personality, conversation skills, energy and enthusiasm and odd things like neater handwriting.
    I feel like I am regaining some strength in my muscles. It is weird though because it is all so subtle but it isn’t just me noticing these things now.
    My husband is convinced of my improvement and I had a work colleague comment that my quicker recovery rate is noticeable! My pain levels are lower and I have ‘dropped’ 2 Ibuprofen tablets/day. I am almost half way thru in Phase 2.
    I’m on way, uh, uh, cheerio Vicki

    Thanks so much to Dr Marshall and the wonderful volunteers on this site.

    cheerio Vicki
    Vicki SA (ME/CFS)
    ____________________
    ME/CFS 2000, Splenectomy 1980, MP Ph2 13/4/06, Mino100mg qod 16/3/06, Benicar 40mg q8hrs 27/12/05, NoIR/sunlight Oct05, D tests Mar 06: 1,25D=24.23, 25D=12, Sept 05: 1,25D=46.9pg/ml & 25D=16.48ng/ml, Ratio 3, Meds: Zoton, Endep, pain meds. Supps:Magnesium

    Aussie Barb
    member
     

    Joined: Sun Sep 10th, 2006
    Location:  
    Posts: 386
    Status:  Offline
     Posted: Mon Sep 11th, 2006 18:58
    grace: CFS All the things I can do...


    Jun 4th, 2006: I have been able to leave the home several times a day etc,etc.

    I had a birthday and can remember last year's very well [4mths on MP]. Girlfriends took me out to lunch. I was very ill and barely able to sit there, took days to recover.

    I keep thinking last year what I would be like this birthday!!!!.

    Well it went like this......Didn't do the kitchen before I DROVE myself to my friend's house, then she drove me and other into the country to an old pub/guest house, we had a great lunch, lots of laughing and talking. Come back to her house, DROVE myself home.. it was NO effort.

    Then I took daughter to have her blood tests. Husband was struggling , because of birthday he tried to do a bit of house work for me. I COOKED a simple dinner for everyone. Husband then practiced the art of breaking a lot of MP rules (he is on MP). He become quite ill into the evening. Thrill of all that I was able to do.....took only a half the next day to recover!!!!!

    I still have a way to gooooooo, but heading in the right direction

    Grace

    November 2006:
    My POTS was really bad with BP dropping when standing and then the heart and adrenalin pumping madly trying to bring BP up. I have no POTS now, only get a bit light headed if crouching down for a while and stand up too quickly.

    My CFS is becoming more like a bad memory as I just keep getting better!!!!

    January 2007:
    Things are just getting better all the time.:D

    The last few days I have been doing a big clean up around the place. The last 7 years I didn't have the mental, emotionally or physical ability to sort and get rid of stuff. Although I have had enough of it now:X. But it has been fun and productive.

    I have been able to cook the odd meal like the good old days {before cfs}. CFS headache comes and goes, I will be really glad when this finally leaves for good.

    I have been doing some heavy {for me} gardening with lots of breaks. Before MP I would have been flat out lifting the mallet or even going to get it.

    Slowly, slowly I am starting to be able to multitask again and able to think through more complex matters. I notice the car radio doesn't annoy me as much or as often when I am driving. The latest muscle improvement has been the top of my neck. At the worse of CFS I could have worn neck brace when been driven, as when my DH drove I couldn't support my head properly  with his braking and accelerating. As he gets better I am sure his driving will too, as mine has.;)

    see also
    Grace: Now - I never lay on the couch or recline: March 07
    Grace  improvements
    GRACE being able to do things..
    Grace Muscle wasting Muscles regained and healing
    ___________________
    Grace: CFS, oct04 D25=26 D1,25=48/ feb05 D25=22 D1,25=52 /Jun05D25=9,aug06 D25=9 D1,25=48,feb06 D25=10 D1,25=41 NoIR endep/ MP PHI Feb05/ Beni Q6H/ PhaseII JULY05. Phase 3.

    Aussie Barb
    member
     

    Joined: Sun Sep 10th, 2006
    Location:  
    Posts: 386
    Status:  Offline
     Posted: Mon Sep 11th, 2006 19:04
    jillbc and the Fisherman: Sarcoidosis: Things are moving along well for the fisherman.

    Jun 9th, 2006: Hi all you MPers, especially those that are saying "is this for me".

    Things are moving along well for the fisherman. With all the herxes going on it is sometimes difficult to focus on anything else. Last month he got overwhelmed with a herx on a Phase 2 abx. he felt absolutely rotten and coughed continually while his lungs herxed and herxed. It took a while to get that med out of his system and return to some semblence of norm. Looking back-he must have increased the amount of abx too fast. He is now re-approaching that abx with due caution.

    But, what I wanted to talk about was his improvement. Yesterday while cleaning out the glove box in my car, I found our copy of letter his respiratory specialist had written early last November. It said:

          "The patient requires very high flow oxygen. Increase oxygen subsidy to 8lpm for exertion....the resting and nocturnal oxygen requirement(s) of at least 6lpm."

    Well, yesterday we went out for lunch with my sisters and families. We left the house at noon, drove 15km had a nice long lunch until 3.  At the end of the lunch my sister, who hasn't seen him for a few weeks suddenly realized he didn't have his oxygen on and, surprised, commented. He then walked up a flight of stairs in the parkade and we finally got home about 4:30.  Although, he had taken his oxygen tank with him, during the whole outing,  he did not use his oxygen at all.

    Not having the oxygen on for hours gives him such a feeling of freedom.  He has been hooked to an oxygen tube for the past 11 months. In the past he has been able to do some walking or have a snack without the O2, but doing a walk, stairs and eating a full meal, and then not having the O2 is major improvement.

    Also, as long as he has not exhausted himself, he can recover his oxygen sats. more quickly.  By that I mean, he is able to bring up the percentage of oxygen saturation in his blood to normal without having to resort to putting on the oxygen flow to bring it up- he can sit quietly, breath deeply and the oxygen % comes up.

    So that's what is happening in our part of the world.   Take care all.

    jill:) and the fisherman:cool: 

    see also
    Fisherman Update
    1 year update
    TRANSPLANT talk (preMP)
    _________________
    Fisherman: Dx. pulm & skin sarc 1983, viral pneumonia July'05, last prednisone 10/07/05, pantaloc 40mg, & lasix 40mg OD; on O2 0.5-3Lpm; NO sun or D: NoIRs; Began Olmetec 40mg q6h 10/19; Phase 2,12/26. D'd in the 10's

    Aussie Barb
    member
     

    Joined: Sun Sep 10th, 2006
    Location:  
    Posts: 386
    Status:  Offline
     Posted: Mon Sep 11th, 2006 19:19
    DNStog: Sarcoidosis: Since I last posted my major MP progress report on August 15, 2005, I decided it was time for an update and review of then and now...to help me recall how far I've cruised. 



    Jun 12th, 2006: Benicar only vs. NOW

    -Stumbling, Atrophy: GONE - still GONE
    -Light headed, Brain fog: GONE returned during Mino, Phase II & occasionally Phase III, NO LONGER PREVALENT
    -Feelings of falling when descending stairs: GONE - still GONE
    -Balance: NORMAL (can walk down steps w/o holding rails) still NORMAL
    -Handwriting: NORMAL - still unpredictable, more often legible than not
    -Tightening of Achilles tendons: GONE
    still GONE
    -Arthralgia: GONE - still GONE 
    -Paresthesia: GONE - still GONE

    -Neck Pain: GONE - occasional a herx symptom, ache mild & short lived
    -Sciatic-like Pain in left leg: GONE - still GONE

    -Concentration: BACK - herxing symptom, GOOD most days
    -Decision Making Ability: BACK - herxing symptom, GOOD most days


              IMPROVEMENTS PHASE I ANTIBIOTICS ADDED:

    -Periodontal Disease: GONE per dental exam" gums look great" -still GREAT
    -Granulomas: subcutaneous both arms due to return in May  '05 - GONE - returned right arm May 2006, smaller, less achey, seems to pulse
    -Granulomas (subcutaneous) in both feet: GONE - still GONE
    -Lung granuloma: DISAPPEARING (all symptoms milder than before MP) - occasional herx as slight sting/burn feeling- no follow-up x-rays or CT scans
    -Weight (Obese): STABILIZED - gained 20 pounds this past winter :X

    -Raynauds Syndrome: attacks less frequent & shorter in duration - SAME
    -Skin Sarcoids: itchy, weeping, disappearing (some  GONE) - MOST gone and  others improving - peeling & falling off, itching & weeping stopped
    -Mood swings: improved in duration and intensity - still getting better  
    -Seasonal Rhino-sinusitis: markedly shorter in duration & intensity -rare sneeze & stuffy nose


         IMPROVEMENT PHASE II, 2ND  ANTIBIOTIC ADDED:

    -Insomnia: GONE - pulsed for a while, sleep patterns GREAT since end of April '06
    -Sleepiness: GONE - still gone, even when not enough sleep
    -Fatigue & strength: levels up & duration longer - VERY GOOD most days

    -Falls: GONE - still GONE
    -Carbohydrates cravings: dissipating - currently GONE (two weeks)
    -
    Dryness, burning & light sensitivity of eyes is less severe - seldom irritated
    -Ocular  pressure: eyes improved past several months - NORMAL 2 mos.+
    -Hoarseness in the morning: GONE, after 41 years - still GONE


    PHASE III, after several different antibiiotic combos have been completed:

    Wheezing: Occasional short spurts set off by exposure to smoke, instead of every exposure that sometimes required inhaler

    The following herx symptoms occured for short durations for the first time during Phase III: Ache at site of root canal done 8 yrs. ago accompanied by a sore jaw and head-ache for a few hours; Return of cold sore after two years controlled after a few days with MP Board advised supplements, instead of normal strong RX Valtrex.

    Ongoing symptoms; swelling of feet comes and goes every day; Tinnitus in both ears started during Mino stage and currently comes and goes in right ear, constant in left ear, obesity. 
    The biggest unexpected surprise on Phase III, for me, was several weeks of emotional herxing without 3rd abx.:shock: 

    Wishing all of you well, gently! Donna still cruising ________/]_________ :dude:


    see  Donna Update Oct06
    ______________
    Donna: Sarc skin jts pulm neur| Raynauds Phenomenon Uveitis Hypothyroid Sinus 65lb gain| trigly-108 D25-20 D1,25-D 40Aug04; D1,25=30 Aug05| BeniQ6h 12/27|MP2 4/27 abx chg 7/8| Prevacid Q48 Loritab Synthr| Q| MT & Prb as needed Mag| MP3 11/19/05

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 19:23
    jillian: PulmoSarc'79 FMS CFIDS,etc WOW!!!!! WOW!!!!! WOW!!!!!I cannot believe how different I feel--after only nine months on the Marshall Protocol! How WONDERFULLY different.



    Jun 12th, 2006: My head hasn't been this clear in about 20 years. My brain's been clear enough at times that I've been doing a project that's taken phoning organizations for information and/or doing research on the internet, then composing emails to each of these contacts, and keeping track of them all. Been able to do it in fits and starts, but a couple of times have been able to do it for hours. Doing anything for hours with my brain not sludging up or getting physically exhausted is amazing.

    When I spoke with a friend last week she said that I sounded noticeably better. Coming from her it was quite a compliment.

    I've pretty much been living in sweats the past 12 years and haven't given much of a care about what I looked like. Didn't have the energy to care! That's slowly been changing, but now that I'm going to the conference I did dig out some lighter weight clothing and even got into my jewelry box for accessories--that's a VERY good sign. When I used to have a life I wore jewelry, but haven't felt like wearing it. Even decked out my hats for the conference :dude:...

    My posture is even different. For the last 15 years I couldn't sit/stand straight without forcing it for more than a few minutes. Today, I can't even slump to that position! It's amazing. Guess all that mid- and upper- back Herxing really did have a purpose :). (Come to think of it I don't think I wrote much about that in my Progress Report. Funny it all becomes so much a part of normal that I forgot to note it all the time.) And, I don't feel physically heavy. I don't know how to explain it. Remember the ogre in fairy tales, the big lumbering guy, kinda hunched over? That's how I used to feel (and still felt while Herxing). This, this is different. I feel like a dancer. Like a dancer about to go on stage.

    I feel like I just woke out of a coma. Whew, I'm awed.

    No wonder those that have gone before us say we have no idea what health is like and that we have to re-define what our end points are!

    I feel powerful and full of energy.

    Well, gonna take this new me for a spin and see what happens :dude:.

    'til later,
    Jillian
    __________________
    Primary DX: PulmoSarc'79,FMS,CFIDS,etc; disabled since'93; 10/02:ACE=61, 1,25D=42,25D=27 NOT FROZEN; avoidD/Noirs,etc.since 08/2002; 04/05:ACE=77, 25D=10;07/05:1,25D=26 FROZEN. P1 Oct/05-Feb/06: ModP2 started Feb/19/06.

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 19:27
    Jillian said "My posture is different."
     Belinda wrote Jun 12th, 2006:
    Posture and the strength to maintain better posture is another subtle sign of recovery that isn't immediately apparent.

    For a long while I couldn't figure out why people close to me - like my mother, who's several inches shorter than me anyway - seemed to be shrinking. Standing in my husband's arms, it seemed as if I were growing taller over several month's time.

    After some contemplation, I realized two things:
    - I got shorter when I was ill but wouldn't admit to that fact. Somehow I put off resolving the discrepancy between my "old height" and my height when I was ill. The added pounds I carried then also gave me little incentive to face my height.
    - After more than two years on the MP, when I began to work on regaining my muscle strength in my torso and abdomen, I got taller because I had the strength and energy to stand fully upright. It's amazing what a burden this disease is.

    A few weeks ago, I stopped at a garage sale held by a neighbor almost a block away. I hadn't seen her in years, but she knew me. Since we'd both been on oxygen the last time we talked, she went on and on about how I'd improved my health.

    The neighbor told me that a tall woman sort of like me had a habit of sometimes walking in the neighborhood, wearing a hat and gloves. She looked me up and down (I was wearing my hat and had my gloves in hand) and realized the walker was ME! "How did you manage to get well AND grow taller?" she said. I had the right treatment and so that I got rid of the pain, and regained control of my muscles, I told her.

    Life is good.
    Belinda
    ______________
    DX: sarcoidosis 2001, but systemic symptoms decade+. Prior DXs: fibromyalgia, pneumonia, TMJ, 12 dental fractures, nasal polyps, chronic sinusitis, "benign" lumps. CURRENTLY: 3 years on MP, no symptoms, some Herxing. Got my life back!!

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 19:30
    Bill: Sarcoidosis: Improvements impress Dr:

    On the good news front, I just got back from my primary, who was not ready to try the MP with me, you know voodoo INTERNET medicine and all is slowly coming around as she sees a slow weight loss and all of my levels seem to be coming into normal ranges, she wanted to think it was because of the weight loss but we know better. 

    We wanted to check my vitamin D 25 Hydroxy level, it seems I have been a very good boy it is at 7.0 ng/ml, I was so afraid it was going to be over 12. 

    Vitamin D, 25 Hydroxy of 7.0 seemed to concern her also but I explained again to her about the TH1 stuff and she dropped it .  She asked me about bone density testing but I asked her why she was not concerned when my 1,25 D was at 60 she was not worried about calcium leaching and she seemed to drop that one too.

    With the way things seem to be going like clock work as far as treatment and progress, I believe we will turn her around to our side soon, I love her as a doctor she runs any test I want and gives me all drug samples she has in order to help me, I respect her for her understanding of her limits of time and concern about the MP, and most of all what seems to be little bit of change in her feeling about the treatment I am receiving from my MP doctor.  Results seem to do that.

     I feel a good feeling of over all health already, maybe because I know I am getting better, I still have Herx pains and what we refer to here as my "A" hole days but it seems as if I don't care and even look forward to a little herx, lets you know you are doing it right. 
         Just the knowledge of getting better is making everyday a little bit better.  Knowing that I have stopped dieing any more is the best part of all, hope is so good to have it makes the not so good Herx days even seem to be good days. 

    Remember to always surf the Herx

    Bill
    _________________
    Diagnosis, Sarcoid May 2005 lymph biopsy/Phase 1 MP,Started Benicar 40mg q6 1/7/06 started mino 75mg. q48 4/11/06 ,diazepam 5mg tid, D tests 11/05/05:1,25D=60 & 25D=19.8, avoiding light & D, NoIRs 12/13/05

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     Posted: Mon Sep 11th, 2006 19:33
    Desert Marie: LYME: how much better I feel after eight months on the MP -- now more focused on my life than my illness.


    Jun 16th, 2006: I can't believe it has been so long since I last posted. Could be a reflection of how much better I feel after eight months on the MP -- now more focused on my life than my illness.

    As I've mentioned in previous posts, my thinking is much clearer these days; I can barely recall the brain fog that severely limited my thinking only 5 or 6 months ago.

    I've even moved into a more demanding position at work, doing groundwater analysis. No way I could have done that a year ago.

    When I run into people I haven't seen in awhile, they inevitably comment on how much healthier I look now.

    I am so thankful to have found this protocol. I don't even want to think about where I might be today without it.  Seems that I talk to someone at least as often as each week who has Th1 symptoms.  I've learned to temper my MP enthusiasum; most folks don't seem interested in anything that requires sacrifice, even in the face of so much gain.  I can't understand that.

    more Oct 06: Marie's Progress - Lyme 
    ___________________
    Lyme dx 4/04 (1998?)[6/05: 1,25D=66, 25D=30] avoiding D, NoIRs/ Estradiol, Mg / 10-10-05: comm beni 40mg Q6-8H; 1/21: Mod Ph2 [2/06:1,25D=35, 25D=12]

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 19:37
    jolbell69: Chronic Borreliosis & Bartonella ME CFS: I have recovered well from my debilitating illness with the MP. The MP has been a miracle for me!!

    Jun 22nd, 2006:

    Dear All,
    I have been on the MP for exactly 2 years on Saturday. 
    I have recovered well from my debilitating illness with the MP - to the point I go out every day, and am thinking of returning to work later this year.
    The MP has been a miracle for me!!

    Oct 10th, 2006
    I had a fantastic time in Greece with some transitional problems, usually due to too much sun - not intentionally. It was the holiday of a lifetime, and I don't regret a minute of it!!!

    Jo. 
    ________________
    Jolbell: DX:Chronic Borreliosis & Bartonella, ME/CFS, Autoimmune Thyroid & Hypoadrenia. TX: Armour90mg, Cortef12.5mg, Florinef0.1mg, Prozac. StartedMP: 25June04. 25,D=16.7ng/ml, (Jan05) No1,25Ddone. Benicarq6h. Started Phase I:19May05. Started Phase II:16Sept05

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 19:41
    Carole: In Phase 3: I am “living” proof that the Marshall Protocol is the only answer to being a Th1 survivor!

    Jun 26th, 2006: The following is a summation of medical problems and of symptom resolution that was presented for the "Panel on Healing" at the LAX ARF Conference (6/18/06)--
    • Diagnosed with sarcoidosis following a mediastinoscopy in February 2004.
    • Medical/physical problems—Have had a lifetime of medical issues:
    1.)      As a child—kidney inflammation, chronic tonsillitis, sinus problems, and behind-the-knee pain.     

    2.)      As an adult—In 1974, had a normal delivery of our son after late term swelling and elevated blood pressure.  In 1975, my first breast lumpectomy was performed.  I sought medical care for escalating back pain, stiffness, and numbness.  

    In my early thirties, I had back surgery and a pituitary tumor removed.  Thyroid nodules, a goiter, and cardiac problems emerged. My spleen became enlarged, as well as lymph nodes in my groin and neck.  Sun rashes appeared with sickness and weight loss.  Swelling in my toes and feet made it painful to walk, and I suffered extreme exhaustion and breathlessness.  I slept for days and tested positive for mono. 

    In my mid-thirties, I was on a beta-blocker for increased PVCs and tachycardia.  I developed more back problems and received a diagnosis of myofascial pain syndrome with a ticket to rehab. I had lesions on my palms biopsied, took prescriptions for gastritis and gastroduodinitis, and developed transient loss of vision. I was diagnosed with mitral valve prolapse, and migraines became my common headache.

    I began Synthroid in 1989 and abnormal tissue was found in my colon.  The next year began a series of returning cervical polyps, the removal of my gallbladder, and a TMJ diagnosis.  I sought care for cervical and lumbar sprains and scoliosis.

    In my early forties, heel pain began; and elevated blood pressure became a concern.  I faced months of urinary tract infections (strep in my bladder), yeast infections, vertigo, and continued cardiac issues.  

    In 1995, I was referred to a cardiologist.  Prolonged spasms and pain, with decreased mobility, led to a positive ANA test for lupus. 

    Within the last ten years, more symptoms arose: swelling of the salivary glands, substantial hair loss, and breaking of my fingernails just above the cuticle.  Fibroids, excessive bleeding, and pain led to a hysterectomy. Recurring colon polyps (pre-cancerous by 1999) and breast cysts required close monitoring.  Leg pain, teeth sensitivity, tendonitis, bursitis, and what felt like fluttering in my brain were added to my previous escalating complaints.  It became “normal to have an abnormal EKG.”  By the time I had turned 50, I had been examined, monitored, and tested by a multitude of specialists all the way to the Mayo Clinic. 

    By 2003, I was plagued with a recurring chest rash; an intense, all-over body itching; and fractures in my teeth. I agreed to two crowns, then the preparation revealed severe absorption in my jaw and the need for a root canal. I had osteoporosis. Years of overall edema had grown worse with cellulitis of my nose and swollen eyelids.  Near the end of that year, swelling and pain in my legs were becoming unbearable; and I was losing the ability to freely move my legs.

    To make a long story short, my lifetime accumulation of coping skills were no match for the battle I was facing—sarcoidosis.  Upon finding SarcInfo.com and the list of hypervitaminosis-D symptoms, I knew I had found the answers I had been searching for a lifetime.  I immediately stopped all supplements (including vitamin D) and my steady diet of fish and eggs.   

    Moments we knew the MP was working—With the blessing of my internist, I began Benicar.  Simply with Benicar and avoiding D, I was able to bend my knees to an improved angle and attempt to climb the stairs with less pain. Within three months of ramping to Phase I of Benicar and Minocycline, my CT scan indicated a slight decrease in lymph node size.  By six months (one month into Phase II), there was a significant improvement throughout my chest, with resolution of infiltrates.  My blood markers were also improved, and my physician was no longer skeptical about the protocol.

    Further improvements—At six months, I no longer had nosebleeds from nasal sores, nor chronic headaches or migraines. I no longer had swelling, bloating, or general muscle/joint pain except for behind the knees.  My heart symptoms had been nearly eliminated, and my thyroid function was improving. My hair had stopped falling out, and my blood pressure had gone from 180+/115 to normal to high normal.  My lifetime of sinus problems disappeared, and my sense of smell returned.  I no longer had rashes or even severe reactions to insect bites.  My bouts with loss of vision had been eliminated, and my blurred vision was improving.  My teeth were not as sensitive, and I was regaining my balance.  The metallic taste had disappeared, and I was able to swallow food normally.  (All this at six months!) 


    As I speak today after 28 months on the Marshall Protocol, my symptoms appear to be herx-related and are tolerable. 
    - All my blood markers and scans are normal. 
    - My thyroid medication has been reduced now to less than half, at 62.5. 
    - My annual vision test this month was better than last year’s, and my recent EKG has even improved. 
    - I’ve also learned from an echocardiogram within the past few days that no left ventricular hypertrophy remains. 

    In addition to the earlier-mentioned benchmarks, I no longer have any previous “prolonged issues.” 

    - Past fatigue, throat pressure, and insomnia seem to be herx-related and minimal.
    - I’ve regained stamina, strength, and thought processes. 
    - It’s wonderful to be able to lift and carry knowing that I will not suffer from back spasms or pain. 
    - I can climb upon ladders and chairs with confidence from improved agility and balance. 
    - I can finally kneel and sit on my feet to garden or to get into the bottom of my closets. 
    - I no longer have to be on guard when I speak, worried about saying words that have nothing to do with the context of the conversation.  
    - I can turn my head and not lose my vision.  I can see clearer images instead of guessing. 
    - I can take a Benicar or an Advil for a herx-related headache and know that it will not escalate into a migraine that even morphine could not dampen.
    - I feel less tissue swelling and see my muscles becoming more toned and defined.  -And I can feel the presence in my chest, neck, and arms of normal blood pressure.

    Do not be discouraged about the D-levels because healing is possible, slowly but surely.  My D-levels were as follows:

    1/2004 (41)
    7/2004 (33.48)
    1/2005 (22.56)
    7/2005 (20.48)
    1/2006 (14.4)
    7/2006 (14)
    1/2007 (9)

    I am “living” proof that the Marshall Protocol is the only answer to being a Th1 survivor!  I am forever indebted to Dr. Trevor Marshall! 

    see also:
    Carole: MY MP Story
    Carole: Edema resolved and Muscle strength and tone return.
    Carole: celebrating my most recent test and CT scan results
    Carole: History and Improvements...
    ___________________
    Carole: PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc |1/04 1/06: 125D=85,34; 25D=41,14| ACE=68,43|

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     Posted: Mon Sep 11th, 2006 19:47
    Leesa:  Sarcoidosis: Uveitus: What a gift the MP is to me…. it is giving me the gift of getting better, not only for me, but for three little kids that need their mommy. It has been almost 6 months and I am already at the point where I just dropped my eye drops completely (I had terrible uveitus)!!


    Jun 26th, 2006: I am so glad that I attended the conference! Thanks Dr. Marshall for all that you have done for all of us! Although I always thought that I was probably doing the right thing by going on the protocol :shock:, now I know for certain :cool:, 100% that I am doing the right thing!!!! Wow, to feel that way about something that you are doing, it makes it work even better:dude::dude:.  

    YEAH I cannot imagine where I will be next year when you all see me again!  

    I so much enjoyed hearing the success stories that we all shared with each other. Hearing the science behind the protocol was powerful.

    And-most importantly-I am doing and feeling really GREAT. I make a ton of modifications to make what I do MP friendly, but I am living life again and I LOVE IT! 

    I want to shout from a mountaintop at how far I have come because I am sooo happy.

    THIS IS THE ANSWER; THE MP IS THE WAY TO GET BETTER. I AM RECOVERING FROM SARCOIDOSIS. I AM BACK AND I LOVE IT....

    I have my life and my family back thanks to Dr Marshall and those of you who encouraged me after my first post when I was unsure…THANKS to all of you!

    Leesa
    see further re updates :)
    ____________________
    Sarcoidosis(12-04 biopsy):Uveitus-eyes, Swollen- Parotid Glands, Granulomas-arms, some joint pain & fatigue; Started MP 1-06; Started Phase 2 03-06 Phase 3 07/06 NO MORE Eye Drops! D test 11-04:1,25D-70 & 25D-46;(5-06)25D-29

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     Posted: Mon Sep 11th, 2006 19:50
    UshiAad: ME:  La Vita e Bella  - Life is Beautiful - Het Leven is Mooi:
    I have moved to phase 3 since beginning of June. So far eveything smoothly. Body responds very well manageable. Body still improving further, symptoms getting less or disappearing.

    Jun 26th, 2006:
    Last week I caught myself wondering what was missing ….and it was the headache top left which had been there for 13 years :D ! Not to get overexcited but it has not yet disappeared completely. 

    MP seems to be working on my problems with getting over colds !
    MP doesn’t seem to have any sort of impact in whatever concentration. 

    Yesterday went skiing for a couple of hours (yeah down south we only have like 6 hours daylight now) and today I feel ‘normal’ without a relapse, which is a bit strange ……:):)

    The only way is up !!
    ________________
    Diagnosis ME 1993, D free diet and low light since 20/7/5, pulsed mino from 24/8/5 till 19/9/5 and Benicar since 21/9/5; Benicar/Mino since 3/10/5; 25D 4/10/5 6; 1,25D 4/10/5 21, NoIR's since 6/11/5; Phase 2 since 25/12/5; Phase 3 since June 2006

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     Posted: Mon Sep 11th, 2006 19:53
    katydid: CFS, MCS Fibro: Getting My Life Back!

    I started thinking this weekend about which symptoms have completely gone since starting the MP.  Once I started thinking about it, I realized just how profound the changes are.

    I'm currently on a frequent dosing break, and it's giving me a look at the future, and it sure looks good!

    When I started the MP, (Jan.'06), I had essentially been on the couch, or in bed, unless I was taking food out of a box, or can, or bathing.  There wasn't any cooking done, except for the microwave.  Housework was left undone, unless someone came in to help.  I just couldn't do it.  I had been this way since April 2005, when I was forced to leave my part-time job because I just couldn't do it anymore.  As soon as I left, I realized just how bad I felt, and how hard I had really pushed myself, and gone so far past any physical limitations, that I wondered if I would ever make my way back.  I was really getting frightened that I would never have any kind of life again, and would just exist.  I couldn't even listen to music, because I got nothing out of it, and it used to be a large part of my life.

    I herxed really hard for the first couple of months, and the months since have been a little easier since learning how to minimize herxing by moving slowly enough, and using meds.  I was so ill that I have to move very slowly.

    My fatigue, now that I'm taking a break is probably reduced by 60%!!!!  When not on a break, I figure something more like 40, or 50% reduced.  That's really huge, when you can do home improvement projects like painting, and re-organizing storage rooms.  I didn't even have the brain function to do organizing before the MP.  I'm sure I won't be doing projects yet while herxing, but it's coming!

    Brain function is so improved that for the first time in my adult life, I can type faster than 30 wpm.  I've typed for years, but just never got fast, and always made so many errors if I was sick, that I had to slow down to about 10.  I'm now at about 50. I'm even going to drive cross country next month!!!  (I wouldn't do it if I didn't have to, but I can't believe that I'm am able at all!)  I can listen to and enjoy music again.

    My chemical sensitivities are essentially gone!!!  I can now use bleach if necessary, and perfumes no longer bother me.

    Sinus headache that I had for about a year, is almost non-existent. 

    Jaw pain that I've had since an infected tooth in 1996, gone.

    These things were all my baseline daily friends, that I thought I'd have to live with for the rest of my probably shorter than normal life.  I was getting to the point where I realized that CFS was progressive, and at some point fatal.  Now I know that it doesn't have to be that way.

    Many of the other daily friends like swollen glands, and aches and pains, come and go with herxing, but seem to not be as troublesome on a daily basis. I was used to feeling really ill on a daily basis, and that awful feeling of knowing something is really wrong with my body is so much better.

    My light sensitivity is some reduced since starting.  I don't get sick, shaky, or sweaty when going out like I did at first.  I'm good for a few hours covered, if necessary.  At first, an outing of an hour took a day to recover from.  Now I get almost nothing from several hours.  We'll see how the car trip goes!

    My eyes have improved since starting MP, according to my eye doctor.  Last time I had driver's license renewed, I couldn't pass the eye test.  You have to have 20/40 or better to drive without corrective lenses.  I couldn't read the 20/40 line at all.

    Today, I read the 20/30 line with no trouble.  The eye doc was so intrigued by eye improvement that he wrote down information on the MP, and was going to tell his sarc patients about it. 

    I hope that this offers hope to others!  The MP isn't easy, but it's definitely the way to go.  I tried everything else that there was out there, but kept getting worse.  Life really is sweet these days!!!:cool:  I know that there are rough times ahead on different abx combos, but I have faith that it is working.

    Kathy  (happily, at six months on the MP)
    ____________________
    CFS, MCS Fibro,19 yrs.Prof.fatig.,joint/muscle pain.1/13/06 NoIR's & Benicar 40 mg Q4H.6/17/06 Mino 50 mg q24h.D's 12/20/05 25D-7, 1,25D-19.Vicodin 10-325 1/2 PRN.12/27/05 Avoid sun,D.Windows blocked,out avg 6 x wk covd & cream

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     Posted: Mon Sep 11th, 2006 19:56
    Guss Wilkinson: PSORIASIS: The following is an article on my experiences with Psoriasis on the MP.

    Jun 27th, 2006: I have suffered from Psoriasis for as long as I can remember – my mother tells me that I was about 7-years old when I developed symptoms – it started as large rashes on the front of my legs and quite thick lesions in my scalp.

    I was very self conscious about it at the time and refused to wear shorts – not good when shorts were part of my school uniform. I also tried everything in my power to avoid PE at school where I had to wear shorts. When friends asked me what I was suffering from I would always reply that it was eczema – they knew what this was and it was safe, but Psoriasis sounded dangerous and contagious.

    No body in my family had Psoriasis – I now suspect my getting it may have had something to do with the fact that I had a blood transfusion at birth – but that is just speculation on my part.

    I was treated using topical steroids such as Dermovate as well as other stuff such as tar shampoos, Dithronol and a whole host of complementary creams of a pseudo-scientific nature. I was also given topical steroid injections.

    Nothing made it go away, but some of the treatments had a soothing effect. Generally, though, the Psoriasis seemed to have a will of its own – it flared and settled in irregular unpredictable cycles.

    At the age of 13, I also came down with the Arthritis associated with Psoriasis – quite badly at first. I remember that I was continually in excruciation pain and I couldn’t close my hands sufficiently to hold a pen.

    Within a year, the arthritis seemed to vanish. I had been prescribed an anti-inflammatory medication and my parents had put me on a very strict non-refined food diet handed down from a herbalist – I am personally very sceptical if either were a contributory factor to the disappearance of the pain.

    My Psoriasis remained the same until I reached the age of 19 after which it seemed to spread. Over the years it spread to the abdomen, the chest, the arms, the hands and my back until I estimate that I had around 70% coverage: very little in the face, thankfully.

    The Psoriasis didn’t affect my self confidence thanks to a wonderful girlfriend, Helena, who became my wife when I married her at the age of 21 in Feb 1985 – for her, beauty wasn’t skin deep (and there was plenty of that!!). I was also an accomplished martial artist and exercised vigorously – something that may also have contributed to my self confidence.

    I was treated with ultra-violet light, fish liver oils and a multitude of creams which continued on for many years. This treatment did help at first but there was always a backlash after treatment stopped.

    Later on, at the age of about 35, I was prescribed PUVA treatment which had no affect whatsoever apart from making me feel very ill. That was when I gave up – no more treatment again for Psoriasis – ever!! From then on, I considered Psoriasis to be other people’s problem, not mine. This attitude felt like a great weight off my shoulders and I felt really good about myself.

    One of the most unwelcome things about having Psoriasis is the fact that there is no shortage of people that come up to you to volunteer advice: secret cures, supplements, poultices, magnetic therapy, crystals, chi, healing hands, prayer and other complete rubbish. These people are not the ones that have or have had Psoriasis themselves – but they all know of countless anecdotal cases that prove their own brand of quackery. Inside, you want to tell them all to mind their own business, but no, you politely smile and thank them for their concern.

    Then, in 2002, I was finally diagnosed with Saroidosis in the lungs after a period of time of feeling really ill. I was immediately put on Prednisone and the symptoms all disappeared (including the Psoriasis) – but it all returned with a vengeance when treatment stopped. I never felt good when the symptoms stopped as those symptoms were replaced by the nasty side effects of the steroids.

    After the first failed treatment with Prednisone, I was put back on another course and the experience this time was similar to the first except that my original symptoms didn’t vanish completely. And, once again there was a horrendous backlash when I stopped the Prednisone.

    This is the point at which Meg contacted me towards the end of 2003 to inform me about the Martial Protocol (as written in my previous posts). I did not have Psoriasis on my mind when I started the MP – for me, this was purely about fighting the Sarc.

    The first year on the MP was very hard – not as much was known then and I struggled hard to continue training Karate, hold down a job and continue studying. This period in my life seems like a bit of a blur now and I have to concentrate hard to remember how I felt.

    It took about a year before I started to notice that my Psoriasis was also improving and over the course of the next year it started to recede to about 10% coverage. Herx, as far as my skin was concerned, didn’t follow my other herx patterns – the Psoriasis continued to have a mind of its own and it waxed and waned as it had always done. But there was always a direction towards improvement till I reached about 5% coverage – where it remained for some time (all I had left were some lesions on my forearms and my hands).

    I finished all the ABX combos late October last year and Trevor advised me to restart the 3-abx combos at full strength. This I did, and I started herxing quite strongly once again. I knew that I couldn’t have been done with the MP as I still had the 5% Psoriasis coverage left. This new herxing also caused the Psoriasis to flare once again. It flared quite badly – it was very angry, aggressive and painful and my coverage increased to around 30%.

    I felt very disappointed at the time and I started to feel very self conscious again – I had gotten so used to having so little coverage that I must have started to take being without for granted. I really had to concentrate hard to recount to myself all the other symptoms that had vanished through the MP in order to keep faith and carry on.

    It paid off. I remained on the first ABX combo until the beginning of June at which time my coverage was back to its 5%. I changed combo and the last three weeks has seen the Psoriasis vanish to what is now an estimated 1% coverage.

    The only symptom I have left (apart from my 1%) is the phlegmmy cough on exertion.

    So, here is some advice from somebody that has had Psoriasis – start the MP and stick with it. Forget your symptoms and stop monitoring them. Keep yourself distracted and let time and the MP to do its thing.

    I hope this helps.

    Cheers

    Guss


    May 2007:
    My psoriasis remains constant at around 1% - 2% coverage, but those spots are very slowly fading.

    The skin does seem to be the most stubborn, but for me it is a great indicator of how I am progressing. It is funny that the bits that are the most stubborn are those that have been exposed to the sun the most  - the hands and the forearms. The exception there must be the face (which must have had the most sun exposure) and I have no psoriasis left on the face.

    My skin did not seem to clear up until July 2004 - but when it did, it went very fast. I was pretty clear by the beginning of 2005 and progess from there has been much slower...but it is progress!


    Psoriasis is a different beast to eczema - it looks uglier and angrier, but it is far more benign - no itching (in comparison). The only time I really felt the psoriasis was when there was a flare-up and the skin got tight and split...and then there were also some sensitive areas which got irritating.

    I long since gave up treating psoriasis. For me it was other peoples problem, not mine...and now I don't need to treat it - yeeeha!!

    see also:
    Guss Psoriasis: 3 years progress Oct 3rd, 2006
    Guss psoriasis June 2006
    Guss Update  Apr 17th, 2006
    Guss doing well Dec 20th, 2005
    Guss Insomnia Jul 19th, 2005
    Guss exercise questions Jun, 2005
    Guss  My MP experience May 25th, 2005

    _________________
    Guss: Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. (Started MP: Oct 2003 - D25...31ng/ml, 1-25D...76 pg/ml), Phase III since July 2004; Benicar Q8H, BP 100/60. Feeling pretty good!

    Aussie Barb
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     Posted: Mon Sep 11th, 2006 20:01
    RxAngel: FMS Mis-DxLyme:  I have decreased my pain meds & muscle relaxers by over 50%, and in the last couple of weeks have been feeling absolutely the best I've felt since college. It's remarkable to feel my muscles sliding over each other instead of jerking and catching.

    Jun 30th, 2006: Hi - I think I am ready to start Phase II.

    Thanks so much - I am so excited, and for the first time in 10 years have some hope for a future!!!!
    ___________________
    RxAngel: MP 1-6-06; FMS/Mis-DxLyme; Corgard (migr. prev), T3, Norco, Zanaflex, Prilosec, Effexor, Trazodone prn sleep, Imitrex 100mg prn, Garlic, E, B-6, av. light/D; Beni 1-6-06; mino 25mg qod 1-14-06 (now 100mg qod 1-24-06); Vit D=24 5-06

    Aussie Barb
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     Posted: Tue Sep 12th, 2006 01:21
    robertrr: Sarcoidosis:  I think I'm pretty normal as far as what I can and can't do. Enough that if I didn't wear the NOIRs, folks would not know I had Sarc or was on the MP at all just by meeting me.
     
    wrote: Oct 21st, 2005:
    the good news for me.  
    -My lymph glands in my neck (the first sign to me that i had Sarc) are smaller than they've ever been since first dx 3 years ago. 
    I'm sure I had Sarc for years but that particular year I'd done a lot of vit d supplements and it kicked the Sarc into high gear.  

    -Also, for the most part (90% of time), I'm sleeping much better and enjoy a restful night. 
    -This last 10 days or so I have had a lot of energy and having to watch myself to make sure i don't do too much .   Progress has been good and I'm very optimistic. 

    Dec 3rd, 2005:
    -I have not experienced night sweats/hot flashes in a very long time. 
    -For the most part, I sleep very well these days (still have an occasional night of insomnia but much much less). 
    -In general, I have a lot more energy (still comes and goes). 
    -The Lymph glands in my throat continue to decrease in size
    -My light sensitivity is decreasing  All in all, herxing very tolerable and worth while to get well.

    Feb 7th, 2006:
    In looking back at earlier posts,
    -I have not had any night sweats since shortly after starting the MP. 
    -I sleep much better than before and have insomnia very occasionally (prior to MP...this was a fairly regular occurance).  
    - lymph glands have decreased a little  in size
    -I continue to be less sensitive to the light. 
    -I have very few days of "brain fog" and most of the time,
    -I feel mentally "sharp" (not always but more often). 

    Although going slow, I continue to feel I'm moving in the right direction. 

    Mar 1st, 2006:
    A couple of worthwhile items to report. 
    -My Vit D,25 was measured at 12...which is cool. 
    -I do seem to be having more energy. My wife has commented about that (her basis is that I seem to be able to stay up later and watch tv shows with her than before).   I have some periods where I feel very mentally sharp...which is nice.   

    Jun 8th, 2006:
    -The most noticable change is that I've had some increase in energy.
    Enough so that I've been doing some projects around the house and
    periodically doing very light exercise (walking dogs 1.5 miles after dark, 5 min on a low Total Gym setting, etc. no vigorous exercise for sometime yet.
    -My lymph glands in my throat have continue to diminish but very very slowly.

    I realize this MP experience is probably going to be a 3 year experience for me...not an 18 month one as I'd originally hoped.

    -my intolerance to light is decreasing...I've been able to take my glasses off to talk to people at work (in my pretty dark office anyway :-)).
    -I have had less aches in joints and have not had the "stiff" feeling in my legs/calves in quite a while.
    I'm not experiencing as much upper hip/lower back pain either and
    -much less brain fog.

    I think I'm pretty normal as far as what I can and can't do. Enough that if I didn't wear the NOIRs, folks would not know I had Sarc or was on the MP at all just by meeting me.

    Aug 4th, 2006:
    -I have gotten to the point that I will go out a couple times a week for a reasonably fast paced walk (3.5 MPH or so) for about 1.5Miles a couple of times a week (at dusk) with no particular ill effects and maybe 1 time a week on the total gym for about 10 min.

    -I've felt well enough to do a couple of pretty major projects around the house w/o impact.
    -In general, with the exception of still avoiding the Sun Light....I have my life back. 
    -My life is pretty much back except for being able to spend time in the sun and wear "normal" summer clothes (and NOIRs). I plan to do some experiments in Oct (after cooler weather) outside for extended periods (I want to try Golfing again) so I'll know more then.

    -My lymph glands in my neck still are swollen but slowly (not straight line...jumps around) getting smaller over time. I'll go several weeks w/o noticing progress there and then one week I'll notice some are a bit smaller or maybe I can no longer locate a particular node.
    -My dentist said what's left of my gums are in great shape and he is astounded how quickly that turned around (Now if ONLY I had gotten on the MP before I allowed them to cut away most of the gums around lower molars :-().

    Making slow, steady progress and no longer in a hurry!

    Dr. Marshall, Barb, Lottie, Meg, Belinda, et al.  have my greatest appreciation and admiration....this protocol works.  

    Hang in there, it keeps on getting better and better!

    December 2006:
    I did paint the "last" room I'm intending to paint for a month or so and got it all back together again. ..it is nice being able to pretty much act reasonably normal, although my wife claims I never acted normal, even when didn't have TH1 symptoms :).

    I've slowly increased exercising. I'm up to about 25 min on the nordic track 3X per week (slow tho) and about 15-20 min of total gym about 3X per week.

    All in all....excellent progress. 

    Robertrr: MP for 18 months: results just keep getting better and better

    see 
    Robert R's progress  
    Robertrr:  an account of MP for members of a sarcoidosis support group message board
    ___________________
    Robertrr: Biopsy Sarcoidosis Feb,2003. lymph (lung, throat, abdomen); Oral, bone marrow: NOIRs and avoid light; 7/1/2005; Ben Q6H 7/12/05; Mino 7/26; D 1,25=44 & D25=28 as of 7/12/2005; 1,25=25 & D25=26 as of 10/05; D25=12 as of 2/06; d25=12 as of 5/06

    Aussie Barb
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     Posted: Tue Sep 12th, 2006 01:28
    melinda: LYME: Wanted to post a progress report to encourage all newcomers and any of those thinking about beginning the journey to wellness.  I am coming up on the two year Anniversary of MP at the end of Aug.


    Aug 9th, 2006: wrote:
    Hello All

    I got out my original list of complaints and was amazed at how many are gone and how few are left to eradicate. I am in the third phase and am almost at the max of that medication combo. I had Lyme relapses since the 90’s, the most disabling complain was back pain, muscle stiffness and muscle weakness. At one point in the past I felt like I was headed to life in a wheelchair. 

    I am making this a bit detailed but I hope it helps someone. 

    Before: Back pain. MRI showed bulging discs, Docs sure it was not from Lyme. Had trouble putting on my own pants.

    During MP: Herx increased pain at first then slowly disappeared

    Now: Pain gone, slight stiffness when herxing. Need repeat MRI to prove discs are no longer swollen. 

    Before: Muscle weakness and fibrolmyalgia type pain. Many sore points. Muscle spasms.

    During: Herx made some days very achy and uncomfortable. There are areas that became painful and even swollen. Knees, wrists and even fingers. As areas of inflammation were discovered, reactions occurred and then cleared. At times hands very shaky. Feelings of hypoglycemia.

    Now: Strength is almost normal except during a herx . Doing water aerobics.  Some stiffness in muscles and discomfort in shins and ankles still present. One digit on lt hand still stiff. Stamina not 100 percent , but improving. Must be careful to eat regularly as I get low about 4 or 5pm. 

    Before: Frequent headaches, lt earache and wet ear feeling, lt cheek ache.

    During: all worse then cleared. Included increase discomf in jaws and teeth.

    Now: Occ headache during herx, No earache, no cheek ache, tension in upper jaw and teeth gone. 

    Before: Exhausted feeling in my chest for yrs. Like all energy was gone and at times felt like a panic attack. Easily overwhelmed by noise and socializing.

    During: Symptoms increased and occ to the point of pain but no arrhythmias. My GP did order heart exams because I was having real chest discomf , heart tested fine.

    Now: I have not had that feeling during the last few herx cycles. Thank God.  

    Before: Digestive tract. Sensitive gut, irregular, colitis attacks since childhood

    During: I had increased times of distress, gas, bloating, colitis attacks, nausea, indigestion etc etc

    Present:  Better than I can ever remember. I don’t have heartburn and all those other problems. I do occ get more gas with a herx but very minor now.  

    Before: Always had slow metabolism, but tests didn’t show anything.

    During: T3 dropped and took a small amt of thyroid replacement. Then went up a bit like a rebound. Dr Marshall warns of this.

    Present :I am off replacements as tests are normal. I still am over wt but am hopeful as I increase my exercise I will drop the lbs. I was always sensitive to cold and wore socks to bed. Now I am sensitive to heat but can go to a movie or restaurant without a sweater. 

    Before: Sleep disorder, insomnia and then wanting to sleep to late in morning.

    During: Needed help of sleeping med but even that didn’t help some nights of herx. Also had numbness in hands and arms at night

    Now: I don’t sleep as well one or two nights when I herx. Overall huge improvement. 

    Before: Twitching of fingers, toes, cheek and when really ill with a relapse large muscle contractions in abdominal wall and thighs.

    During MP: Brought out some twitches, but mainly contractions of the bowel caused increased motility and diarrhea. And occ herx and abd pain.

    Now: I had one herx a few weeks ago where my thigh muscle was jumping but have not had many twitches lately. I do get increase bowel motility when I herx. No muscle cramps. 

    Before: Eye sight failed when I got Lyme.

    During MP: Increased light sensitivity, at times unable to use computer. Eyes gritty, irritated and in general sensitive. Tearing easily.

    Now: Not very sensitive but still protecting them from light outside. During herx notice tear more easily. 

    Other things I have had at times during herx is low grade fever. Flu like cold symptoms, runny nose. Coughing and mucus attacks.

    Skin: Very red knees, shins and feet after showering. This is slowly fading as I heal. Itching shins. Itching scalp and dandruff. Bad B O 

    During: Neuro dizziness, poor balance, and mood problems.  

    Now: Neuro herxes are more obvious. Now that I don’t have the body  pain to blame for bad moods , I know that a few days after I ingest my combo of meds I have a few days of sleep disturbance and a feeling of irritability that is based on nothing other than a herx. It is very predictable. During those days I also have foggy brain and my balance is poor. My stamina is weaker and overall I don’t feel as well. I still have increased mucos during herx and a runny nose.  

    Well after reading this I realize I sounded like a real mess. But I want you to know that this disease came on slowly over many yrs, getting worse and worse, but my coping mechanisms got better too. I didn’t really know how bad I felt until now that I am getting better. Many of you will think that you  aren’t as sick as you are, because you are still getting around and coping like I did for yrs. I was never bed ridden, I always tried to force myself to function and I didn’t look ill. But I was slowly losing my life to a chronic disease. 

    The MP has saved me from that fate. It is not a quick fix but it is a cure. I think about it like a process of purification. Slowly our body is seeing the pathogens and killing them and then our bodies need time to rid itself of the accumulated toxins. That’s why we feel worse during the Herx. We have to be patient and sometimes it’s frustrating. But if it didn’t work and we didn’t see ourselves recovering we wouldn’t be here doing the MP.  

    During the last few years I did take holidays from the MP at times. I traveled and had a fairly normal life.  You are in control of how much you can handle. If some months you want to have less of a battle that’s OK. Slow and tolerable is OK.  In the end you are a winner, you get your life back. So I am continuing this journey and will keep you posted. 

    Thank you Dr. Marshall with all my heart.
     
    Sincerely, Melinda
    ____________________
    Lyme99/parathyph86/hepB73/lowthyroid 12/04
    Aug D25-32 D125-58.Jan D25-23 D125-58 Mar D25-25,D125-50 Dec05 D25-24 D125 32.Started MP/8/25/04 Benicar40q6/FullMP 9/20/04 2nd Phase Feb12,04 3rd phase 3/6/06 noirs/activella/ambien

    Aussie Barb
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     Posted: Tue Sep 12th, 2006 01:36
    Moxie: CFS 24 years - FMS: ....23 years of illness is slowly slipping into the past and my new life is emerging. Great stuff
     

    wrote Jul 27th, 2006: I have continued to do well on Phase 3.
    -My "air hunger" has really settled in the past 2 weeks and my energy levels are definitely improving. 
    - I have now lost approximately 9kg in the past 16 months and this is truly amazing as I have just not been able to shift any weight in the past few years.

    My D levels are still high but I am not going to stress about them.

    I actually met up with a fellow MPer recently and of course, we instantly recognised each other!! Big hat, glasses and gloves.....it was great to meet with a fellow alien. We had heaps to talk about and will catch up again shortly.

    So all goes well as I hit 60 on Monday. 23 years of illness is slowly slipping into the past and my new life is emerging. Great stuff

    Thanks everyone:cool:

    Aug 10th, 2006:
    In the past couple of weeks have caught up with some friends that I had not seen for quite some time. (60th birthdays do that) Three of these are friends I have only known since my illness (20+ years).

    -Everyone of them commented that I looked "the best I have ever seen you"!!!
    -and the other comment was "your hair looks so healthy"!!

    -So not only do I feel much better, I obviously LOOK much better. Oh what a feeling.....

    -Am certainly doing much more in my life and experiencing much less pain. My air hunger continues to be almost not there - yippee!!
    ___________________
    CFS 24 years - FMS. Benicar 4 daily - Phase 2 started 16/5/05 - Phase 3 started 10/5/06 Metformin 500mg 1/2 bd. Vit D 100nmol/L (41.6) 1,25 D 61nmol/(

    Aussie Barb
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     Posted: Tue Sep 12th, 2006 01:42
    Sydney Chris: Review of the last 15 months and more as follows:

    Jul 24th, 2006: Checkpoint update..:)

    Symptoms / % Resolution

    Headaches: 95%
    Dizziness: 90% (an MP only symptom)
    Light sensitivity: 90%
    Tinnitus: 95%
    Sinus congestion: 100%
    Sore throat: 100%
    Brain fog: 70%
    Unrefreshing sleep: 90%
    Joint stiffness: 100%
    Localised swelling (fingers / feet): 95%
    Muscle weakness: 95%
    Myalga / fibro myalga (legs in particular): 90%
    Flatulence: 80%
    Bloating: 100%
    Heart palpitations: 100%
    Sluggish digestion: 95%
    Sporadic lymph node swelling: 75%
    IgG dependency: 70% (injection interval has increased from a 10 year average of 14 days to 22 days since starting MP)
    Poor energy levels: 75%

    Some of these symptoms had dropped off very quickly after starting MP, most of them have faded as my level of herx has diminished and my underlying health has improved.

    Have been completing up to 30 minutes of very moderate exercise 2 - 3 times a week, regularly for the past 5 weeks. This is highly unusual.

    ATM am feeling as good as I have in over 20 years. I do have a surging energy which is a little confusing, but refreshing after such a long absence.

    Am hoping I will not revert to my former energy levels as the dosages increase and can continue to just get better and better, but am prepared for a temporary reversion if it occurs.

    14th September, 2006:
    Noticing that I am sleeping much deeper over the last couple of months and waking on occassion, very refreshed. This hasn't happened for some 20+ years..:)

    23rd Oct, 2006:
    Exercise tolerance has increased. I would categorise myself at this stage as certainly getting much stronger, but still without any real endurance / stamina. 

    I am immeasurably better than I was 18 months ago when I started MP, and thus far this is a success story that I am happy to share on the basis that it would hopefully give some encouragement to other members...:)

    November 2006:
    Currently I am as well as I have been for 20 years.. without a doubt. I am looking forward to greater things.

    Best to all..:)

    Chris

    July 2007:
    My PSA readings were closer to 8 or 9 (well into the cancerous ranges) early on in MP... and as you do I had the biopsy's and all sorts of alien probes with no adverse findings.

    Over the past year the PSA level has dropped from these 'out of range' readings to well within the safe zone. My Dr while recommending the investigation for safety's sake, was confident it was no more than the prostrate (being just another gland) that was inflamed by CWD's, before MP resolved the issue over time.
    ____________________
    Chris: MP from 16 Mar05. IgG deficiency. VitD ratio 2.8:1 (177/63), Votum Q6h, NoIR's, Vit D, sunlight, PhII-16 Jul. Ph III 27 Nov05. Mod PhII Jan 06, Feb 06: VitD 25OH 6.8ng/ml, 1.25Di 18.8pg/ml. PhIII from Apr 06

    Aussie Barb
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     Posted: Tue Sep 12th, 2006 01:51
    AmyEliz: RA: my 'positives'.... I do feel good, even with two jobs. 


    Aug 18th, 2006: .:)
    -I have been off all medications given to me by my Rheumatologist since Feb '06. -I have never come close to any of the pains prior to starting MP (Very strong sharp pains- pains in the joints so bad that I couldn't sleep - pains) . Just being free of the harsh medicines I was taking is great strives forward. Most of my aches and pains have been tolerable.

    Overall, I am doing well. I wish all the best for everyone.

    Aug 20th, 2006: Good news! I have not had any MVP (chest pains) in a couple weeks.

    AmyEliz


    January 2007:
    I know I am getting better! I still have never come close to the pain I had before starting MP. I know I am killing the bacteria.

    I am working two jobs with one day off a week!!!   :cool: I do feel good, even with two jobs.  I still believe there is definite, swifter results for those who start MP in the early phases of any illness. 

    Carol wrote: "I had lunch with Amy last week.  She looked great!  I couldn't believe it when she told me about her work schedule.  One of those jobs she mentioned is physically demanding and keeps her on her feet.

    But the real piece de resistance was when she playfully jumped up and down before she got into her car to leave.  Wow, was I impressed!"
    <<<


    ___________________
    AmyEliz: RA(3-05 MVP(1981) Age 41. 1-25D=36 25D=33 Avoid light & D NoIRs| comm Beni 4/28| comm mino. Started Phase two 7-3-06

    Aussie Barb
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     Posted: Tue Sep 12th, 2006 01:55
    Chris: Sarcoidosis: 20 months later ... and 20 months better.

    Member in Phase 3


    Aug 15th, 2006:
    More endurance, less fatigue; but it still comes and goes with the abx & herx. I'm taking the stairs a lot just to stay away from the skylight by the elevator at work.

    Intestinal problems are just about gone; downright normal without the abx-caused herx.

    No more blood sugar troubles;

    Joint pains and stiffness just about gone (and I've dropped doing the exercise to keep them loose ... they just don't stiffen up any more.)

    Triglycerides are cut in half. The lab forgot to do the HDL check last time, but that'll get checked before the next dr appt.

    Incipient thyroid problems (Wilson's temperature syndrome(?)) are gone. I can now wake up, get up and move with purpose within a few minutes, rather than taking 30 minutes to an hour before I so much as pour a cup of coffee without spilling.

    The depression & mental fatigue and fog are gone; or mostly gone. Certainly better than I've felt in years. I feel that things are still going to get better for a while, so it's a bit hard to tell where cure ends and hope begins, but I've had so little practice with hope over the years that I'm sure it is 95% cure.

    I'm also sure I've forgotten some of the things I've listed as symptoms along the way. Tinnitus still bothers, but the dry eye and dry mouth are on the way out ... I'm still not good (and never was, likely never will be) at keeping lists.

    December 2006: Latest great news...
    One of the things going bad 3 years ago was a rising PSA value. I don't have the original numbers, but the value is now 1.7 and back in normal range. I know that PSA isn't terribly reliable, but I'm happy with this news.

    Coffee is starting to keep me awake at night. I've no idea what has started working, but I need less caffeine now to keep me working.

    There is a marked qualitative difference in the time between herxes. I'm up, active, and somewhat optimistic. Folks who don't see me often have commented on the dramatic difference in appearance.

    April 2007:
    I've been on the MP for close to 3 years, and it works. Pre MP, my cholesterol, triglycerides and PSA were not good.  The cholesterol and triglycerides actually went up a bit before starting down.  The PSA was in the caution area.
    The diabetes is gone, the eye troubles have stopped, the LDL is down 40 points, PSA is back to normal, thyroid symptoms gone, and the IBS is only there as a faint shadow of it's former self on high herx days. Strength and energy are returning. The MP works.

    see also:
    Chris: sleep apnea, energy levels, muscles improvements.
    Chris: Your children are more at risk from associating with you and your sarcoid than they are from a few days in the dark.
    __________________
    Chris: sarcoid diagnosed 1991, probably started 1983
    D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue

    Aussie Barb
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     Posted: Tue Sep 12th, 2006 02:15
    alayne: CFIDS FM: The following is a mix of improvements experienced since starting the MP as well as those experienced in my month-long semi-hiatus.

    May 15th, 2006:
    Hi All!

    This past month has been a marvelously revelatory one! There is absolutely no possible way in the world that pre-MP I’d have been able to do what I’ve accomplished here at my folks. I could barely walk or think straight when I started the MP process. List of Improvements:
    • Incapacitating fatigue – I still experience varying levels of fatigue, but thus far, haven’t been bed bound for days as I was pre-MP. Over the past month, I’ve accomplished far more than I’ve done in a very long time! Have had some days of unbelievable stamina and energy and the others have been pretty darned good.
    • Severe migraine-like headaches – Haven’t had one since avoiding sunlight and D.
    • Low grade fevers and low basal body temp – Daily fevers stopped with the MP and body temp generally hovers in the 98 range now.
    • Body/joint pains – Hard FM symptoms gone and only manifest themselves as herx now.
    • Dry mouth and eyes – Greatly diminished
    • Daily chills and night sweats – Used to be pretty constant, but have only had one night sweat in the past couple of months.
    • Bruxism – Gone! I wore a super hefty mouth guard after years of clenching so hard my mouth bled. I’ve not worn it for at least two months and all’s well!
    • Dental – Gums have gotten loads better and I’ve not had a toothache or something rotten happen this whole time, which is amazing to me. I keep waiting for some major dental herx to hit, but so far it’s been negligible (have 15 root canals, strong propensity for jawbone infections, etc.)
    • I can breathe through both nostrils for the first time in my life!
    • Post-exertional malaise – I don’t need to rest for days after exerting myself. Granted, I’ve learned to pace myself MUCH better and generally know when to stop, but it used to take me five days to recover from a few hours of teaching (I’d be flat on my back in bed), and a day to recover from showering. I can now often keep busy for a few hours to a day or days and recover quickly (hour to a day!
    • Esophageal spasms – Gone
    • Foot/toe cramping – 90% gone
    • Chronic dandruff and dry facial skin – 99% gone.
    • Feet edema – Started swelling a few years ago. Haven’t swelled much at all since starting the MP, AND they didn’t swell more than a tiny bit on the flight to folks (they’d really balloon from flights, and it’d take a couple of weeks for them to go down).
    • Surprising improvement - Right ear wasn’t painful at all during my flight and adjusted just fine to the pressure changes for the first time in 20 years! Damaged the ear drum about 20 years ago when flying with a head cold. It hurt fantastically after that every time I flew and couldn’t adjust on its own to the pressure changes.
    • Lump in throat – Totally disappeared for Phase 1 and reappeared as a little herx for a couple of days on Mod Ph 2.
    • Weight changes without changes in diet – Dropped from 135 to 112 by December, but since then have gone back to 125 and am holding!
    • Cloudy urine - Gone
    • Sensitivity to heat and cold – The extreme sensitivity to cold has greatly diminished, and I’ll know about the hot weather soon enough. Feet and hands not frozen to the bone any longer.
    • Driving – Had to stop driving completely for two months because I couldn’t handle it. Then slowly worked my way up to three miles maximum for a few months. This last month I drove a couple of hundred miles in unfamiliar areas and did very well!
    • Vision - Don’t need reading glasses or magnifier any longer! Can’t believe it! Don’t have to hold a book at arm’s length, don’t have to tilt my head up to read! I can read straight on, and also print about half this size without even squinting! Seriously!
    • Left shoulder is no longer painful and has full range of movement. It hasn’t herxed since mid-March! This shoulder was never the same after I injured it in a car accident 3.5 years ago.
    • Thyroid, DHEA, Pregnenolone and Progesterone levels back to low normal-normal levels! Stopped thyroid supplementation within a few weeks of starting the MP, DHEA & Preg about 4 mos ago and Progest. & Testost. about 3 mos ago. Menstrual cycles have stabilized for the first time in years.
    • Alcohol sensitivity has diminished greatly. Not that I’m knocking back the booze, but can have a glass or two of wine without any noticeable effect. Not so sure I can be really proud of this one though. :)
      Brain Fog- Still have quite a ways to go, but have definitely improved!
    • Short term memory and focus – They’re still not great, but much improved over the past few months. Am lately beginning to take interest again in world events and can also remember much more of what’s going on!
    • Thought processes, reading and directional comprehension – still cannot read and comprehend heftier academic tomes, but my reading level is greatly improved (from elementary school to some college), I can follow somewhat more complicated plots and conversations, and directions.
    • Vocabulary’s increasing!
    • Speech and writing can still be quite basic at times, but I’ve had definite improvement over the past month.
    • Math abilities still stunted, but better. It takes quite a bit of effort, but I can often add in my head again and remembered how to figure out percentages the other day!
    I am so terribly grateful to Dr. Marshall and his brilliant mind and compassion for others, to the experienced and wise Aussie Barb who’s known exactly how to walk and talk me through some of the major hurdles thus far, plus many of the little ones, to Meg for helping me so wonderfully, and Belinda and Lottie for having spoken to me so brilliantly in the beginning, and to those of you who have PM’d me with such amazing support and kindness. I really want to thank everyone here for showing such courage and determination and helping me and others believe on a daily basis that this is the right way to go.

    We’re all in this together and it’s just amazing to be part of such a group. Hipporay! -Alayne

    November, 2006:
    I've not had a single asthma attack since starting the MP,
    no longer react to most chemical/pollen/mold exposure,
    SOB has greatly diminished,
    and it's seldom anymore that I'm "too tired" to breathe.

    Alayne posture, healing.
    Alayne Summary of Improvements
    Alayne: vitiligo disappeared
    The Panel on Recovery
    ____________________
    Alayne: CFIDS/FM 6/05:25D-34, 1,25D-69 12/05:25D-22 1,25D-44 Sick 6-11 mos/yr for 20+yrs. Sleep dysf (Xyrem), Neuro probs, Pos for EBV, CMV, C Pneu, Myco Pneu. Body totally fell apart 2005. NoIRs, 9/28/05-Avoid Sun/D, 11/17-Beni, 12/02/06-Ph1, 5/8-Mod Ph2

    Aussie Barb
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     Posted: Tue Sep 12th, 2006 02:15
    Ames: CFS FMS: Listing improvements: I am not just happy with the MP...I am thrilled. My body is now strong..it can fight my infection. I will get my health back.


    Aug 4th, 2006:
    If I step back and think about the way I felt closer to the start of the MP and the way I feel now the difference is DRAMATIC. It especially helps that I have recently lowered my dose, and even while I still herx I feel a great deal better..and I'm able to truly realize the progress I have made.

    1. PRACTICALLY NO POST-EXERTIONAL MALAISE: Before the MP I lived in a constant state of fear. Something as simple as walking an extra block could make me feel as though I had just "cracked". My body would collapse..I would end up in bed...for literally 2-3 weeks. Now if I push myself a little too hard I have to lay down and rest...and half an hour later..I get up!! The difference is amazing. My body can actually recover from stressful incidents. I sense that I am SO much stronger and it feels strangely normal!

    2. CLEAR HEAD: I never realized before getting to this point on the MP how clouded my mind used to be. Living in a fog described me well. I have certainly suffered from the herx in my head...but this may be the area where I notice the most dramatic difference. I literally feel as if someone has taken the inside of my brain and scrubbed it. You would never know from my writing on this site..but my thinking feels sharp, my thoughts feel crisp - I think faster. I can memorize things with ease. On several occasions when my herx has not been strong I have felt a sense of mental peace that I have not felt for years.

    3. DREAMS: At the start of the MP and before I started the treatment, my dreams were very negative. I was always sick. Every single night I called out for help and people left me..or I would try climbing a hill with a group of people and get left behind. I contantly told others in my dreams that I was exhausted and that I couldn't keep up. Over this last year on the MP, the "me' I create in my dreams has started to change. I am healthy. I have energy. I do things with friends (and random people!) and I manage just fine. I am no longer sick. I think this reflects the way my body feels at night...it has a new inner core of strength that was never there before.

    4. WHERE"S THE FLU?: At the start of the MP my herx left me feeling as though I had a terrible case of mononucleosis. My throat raged, my nose was constantly runny, my eyes watery. I still have herx in my throat and in my lungs but the pain feels more condensed. The feeling of a raging infection is completely gone. I haven't blown my nose in months and my sinuses feel as though they have been aired out.

    5. LIGHT SENSITIVITY: At the start of the MP I can still remember laying on the same couch I sit on today and hiding under a blanket while wearing my darkest pair of Noirs because there was one 20 WATT light bulb on in the room. Now, in the same apartment I wear my lightest pair of Noirs. When my herx isn't bad I find I have trouble seeing what I'm writing or seeing well enough to make food. The change is incredible.

    6. I HERX BEAUTIFULLY: At the start of the MP, my herx reactions were sluggish. Today my body loves to herx! I so much as touch an antibiotic to my tongue and my immune system starts to put it to use. It feels...like I actually have a functional immune system! This is huge, because I'm not sure it has ever worked during my entire life. In December when my 25D dropped and my herx got much worse it felt like for the first time my body "woke Up" and was able to see the utter devastation that bacteria were/are causing in every organ. Ever since then it has started to fight...and it keeps fighting harder and harder. Cells of the immune system that were once infected have been replaced by new healthy cells ready to attack..and this gives my body a new arsenal to combat infection.

    I think that this might be the greatest improvement: For the first time ever my body feels like it has the power to make me well again.

    There are many more subtle improvements but I'll mention those later. I feel that if I can improve as much in the coming year as I have in this past year the difference in the way I feel will be incredible.

    I do suffer a good deal from herx, but I think everyone realizes that I also fight hard (keep my abx high). i have considered the idea that my abx choices are affected by herx, and maybe they are influced somewhat by an altered state of mind. However I have always been impulsive, fearless, tough...and a risk taker. I love to fight. I don't dwell on the past...I just look towards the future. I know I can put the tough times behind me, and so I am more willing to accept difficult herx when it comes around.

    I am not just happy with the MP...I am thrilled. My body is now strong..it can fight my infection. I will get my health back.

    26th Sept 2006:
    I don't bruise easily anymore. 
    Also I still find I can rebound from exertion MUCH more easily.
    I've been doing some more stretches (very simple)
    walking quite a few stairs every day.
    I do all my own dishes/shopping/cooking

    Oct 1st, 2006
    I have been able to do 2 hrs of online work every day, talk on the phone quite a bit, drive to the supermarket and handle groceries, cook all my meals and wash plates etc. without feeling very run down. I’ve even been doing some streches each morning and also taking hot showers and still feel o.k.

    Over the last four days I have had several moments where I've thought “wow I feel REALLY good!” I can just sense how much my body has healed. I am so happy! I haven’t been able to stop smiling for the last week because right now I feel as if I’m starting to be able to do so much more, think more clearly etc.

    The wonderful part about slowly starting to feel better is that even the smallest events are so exciting. Right now I’m working a data entry job, which in the past I would have found utterly boring. At least for now I can’t wait to start work because it’s great to feel like I am accomplishing something!

    see also
    Ames Progress Phase 3 update Thanksgiving
    Ames: spontaneity and better endurance - yay!
    Ames positive advances
    AMES re MP A CFS patient's experience with the Marshall Protocol
    __________________
    Amy: CFS/FMS/osteopenia/severe insomnia Age 24. 03/05: 1,25D-not accurate 25D-40 07/05 1,25D-60 25D-40. Phase 2: 06/05/05 25D:11/05-29,12/05-49,1/06-37, 1,25D-47 06/06 25D-20 Klonepin, Gabitril, Trazodone, Melatonin (all for sleep)Tramadol for pain

    Aussie Barb
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     Posted: Tue Sep 12th, 2006 02:30
    carol: RA: Summary 22 months into the MP. getting well sneaks up on you.  I have to remind myself that I am off nsaids for the first time in years.

    Jun 9th, 2006: Prior to the MP, I took frequent, high dose antibiotics for many years to treat RA.  Perhaps I killed some bacteria along the way, but now I think the reduction in symptoms I experienced was largely due to the immunomodulating effect that minocycline can produce.  This explains why stopping conventional AP therapy and starting the MP launched me into a dramatic downward spiral of symptoms, symptoms I had never had before and did not associate with RA.  These symptoms included the following:
    • Nausea, abdominal pain and rectal bleeding
    • Episodes of low back pain, dark urine and feverishness
    • One mouth sore, only one, but it was a doozy.  My dentist was very concerned and really wanted a biopsy.  I resisted long enough for it to clear, but it left a scar which I can still feel on the roof of my mouth.
    • Vivid and disturbing dreams.  I woke up crying on several occasions.
    • Tinnitus
    • Profuse sweating brought on by modest physical activity
    • Anxiety
    • Shortness of breath
    • Paralyzing fatigue (I would lay down and literally not be able to move)
    • Gagging/coughing that woke me at night
    • Deep tissue itching, especially over my joints
    • Escalating eye dryness and discomfort, eventually diagnosed as cicatricial (scarring) conjunctivitis and trichiasis (a condition in which the eyelashes turn down upon the eyeball and produce irritation)
    Some of these symptoms lasted just a few weeks, others much longer.  The most serious was the eye problem which persisted for many months and left me with eyelid deformity that required surgery to correct.  All these symptoms have resolved now except for the fatigue and the tinnitus, but both of these are lessening in intensity.

    My light sensitivity continued to escalate well into Phase 2.  At its peak, 20 minutes in the car would result in dizziness, weakness and sweating.  Now, in Phase 3, light sensitivity has dramatically lessened.

    Since starting the MP, I have recovered from “hormone imbalances” brought about by the disease and complicated by supplementation.  I stopped taking cortef and Armour Thyroid in Phase 1 and, very gradually, weaned from bio-identical hormone replacement therapy (estrogens, progesterone and testosterone) in Phase 2.

    I have overcome the effects of “vitamin D poisoning”.  I started the MP with a 25-D in the 30s and it took me a year to get this value down into the teens.  My last three test results were 16 (Aug ’05), 19 (Oct ’05) and 12 (Apr ’06)

    So how am I doing?  At the end of phase 2, after 12 months, I took a few weeks to catch my breath.  For the first time I was able to decrease pain medication because my joints hurt less and I could enjoy walking in the evenings and doing some gentle yoga.  Phase 3 has plunged me back into the thick of things.  None of the systemic symptoms have returned.  My joints are the source of herxing these days.

    I am 22 months into the MP, and a long way from “well”.  This is a hard road.  But my responses have been consistent with the MP model every step of the way and this has given me the will to persevere.  I need to rid my body of this infection to regain my health and I am closer to achieving this objective today then when I started the MP. 

    reported August 26th 2006:
    Yes, getting well sneaks up on you.  I have to remind myself that I am off nsaids for the first time in years, and I'm regularly doing things with my hands (lifting, opening jars, etc) that were not possible just a few weeks ago.  I put my daily alottment of vicodin in my little medicine box each morning and lately there's one left over at bedtime which I just carry over to the next day....another good sign.

    Carol
    from Carol RA summary 

    __________________
    rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin daily for pain...it took a year to get my 25D down in the teens...most recent 25-D=12 (4/06)

    Aussie Barb
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     Posted: Tue Sep 12th, 2006 02:31
    Aunt Diana: LYME: MP for 8 months. I am definitely going in the right direction.



    Aug 16th, 2006: I thought it was time to share some of my experiences on the MP with those of you who are starting out.

    I now wish I had made a list of my symptoms so I could systematically rule them out as they cleared, but alas I did not.

    -I remember one, however, that I haven't had since I started the MP ( that is the right side of my face would droop at least once a week)....(sort of like Bell''s Palsy) that hasn't happened in ages; I am grateful for that.

    -Another improvement that is wonderful is I am reading again. I didn't read for 15 years or so...at least I didn't retain anything. Now I'm reading a book a day and loving it.

    -I am so thankful that there is at last an answer to my health problems. And so grateful to Dr Marshall and his team.....this website is the best part of it all.

    Sep 12th, 2006
    -good news: the area of numbness in my leg is starting to get less numb....it feels like it is starting to feel again....also I have had no creepie crawlies since those bad leg herx days.

    Dec 2006:
    I'm slowly realizing this is a marathon...not a sprint.

    Also, since I feel so much better at this coasting level I am able to "see" and appreciate many of the improvements in my health.

    My brain is really much more capable right now....I've organized and sent out 50 or so Christmas cards and updated and address book that is 10 years old. (I never could have done this, even a few months ago.)

    My eyes were in terrible shape when I commenced the protocol. For years it felt that I had fibers in my eyes....I was always trying to find the culprits and of course, there was never anything there. At one point, my husband plucked some of my eyelashes because I was so uncomfortable....I also started to get small growths on my eyelids and started experiencing floaters. Eye exams revealed nothing but "dry eye".

    The floaters in my eyes are gone and have been for a long time...the grittiness is much less and I only need to use eye drops one or two times a day, I no longer seem to have allergies ( I think they were probably never allergies in the first place).

    I've been talking on the phone and have been able to keep up with lots of different people.. my wit has come back and I'm able to make people laugh again. I'm not crying all the time, which is certainly an improvement. I'm lighthearted again... something I'd forgotten about.

    I'm planning on getting back to painting sometime after Christmas....I've always loved watercolors and oils and can't wait to get back to them....My eyes can see enough now at 30 lux, that I think I can do it. (Colors are all relative anyway)

    All in all, I'm very happy at this moment in time.

    Now that I know what "deep" sleep is, when I look back on my sleeping patterns for the past 40 years I have never slept deeply, and have struggled to stay asleep. Anthing could wake me up and then I would need a miracle to get me back to sleep.

    No wonder I was "wired" and sometimes irritable. I am so grateful for this protocol that I can't say it enough.

    Happy herxing to all.

    - I have many mornings not wanting to get out of bed because I feel so good.....some of them I realize I actually feel something pleasant ....something good.... I had totally forgotten that there were such feelings. When they come along these days I try to "milk" them for all they've got.

    I'm so glad for this protocol...people like us finally have hope again.

    January 2007:
    I have been on the protocol for a year now....have been sick for 18 years. So many of my symptoms have simply gone away and I am feeling stronger and better practically everyday. This protocol is a Godsend....it works because it is based on science.

    August 2007:
    I have had many neurological symptoms disappear (due to antiobotic treatment). I still have a long way to go but have definitely experienced more encouraging improvement since I've been on the MP.

    I have regained my hearing, my eyes are much less inflamed, numbness and creepy crawly sensations in my leg have practically disappeared, and I am sure there are several other things that have improved that are just not coming to my mind right now. (Oh....no more vertigo, balance greatly improved except while herxing, bad taste in mouth gone, etc)

    From this experience I believe the nerves are quite capable of healing once they are given the chance.

    March 2008:
    I had been sick from Chronic Lyme disease for about 17 years when I discovered the MP.
    In the past two months I am really getting excited about my improvements. I am reaching higher ground and feeling better much more frequently....I have days of feeling almost completely normal. I know in the next year or so I will reach total recovery....It is so thrilling. I can't even explain how happy I am.

    see also
    Aunt Diana: healthy teeth and gums after 3-4 months on the MP
    Aunt Diana progress report
    ___________________
    Diana: Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker 2005, 10/1 started light & D avoid 10/12 d-25, D.1,25 32; 11/27 Beni40mg q6h 6/06 D <10; 1,25D 27; 6/11/06 Phase 2

    Aussie Barb
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     Posted: Tue Sep 12th, 2006 03:01
    KFaucher: Ken CFS: camping trip is a better gauge of improvement than a subjective opinion of how one feels at any given moment.

    Aug 12th, 2006: Since I last posted here I have been mostly on break, still on Benicar, sometimes on mino sometimes not. Restarted the second week of July and quickly moved up to where I left off. I then got in one cycle of phase 3 and took a scheduled break for an annual camping trip.

    I had been a little irritated lately that there seemed to be little improvement over the last year. Well, it turns out that an annual event is a better gauge of improvement than a subjective opinion of how one feels at any given moment.

    I have been going camping each year since 1983, with a few exceptions, with a small group of guys that have all been friends since junior high school. For many years now I have felt much older than the others. My physical and mental abilities had decayed much faster than theirs had. Last year I felt better than previous years, but was still significantly worse off than my friends.

    -This year a strange thing happened. They seem to be getting older while I am getting younger! Physically I was able to get through all activities as well as, or better, than they did. I admit I was pretty tired at the end of a 6.5 mile kayak trip, but so was everyone else. (it was against the wind the whole way).
    -Brain fog was non-existent. OK, it did take me a couple hours to get going in the morning, but that was mostly hangover. The sun exposure caused no flares, herxes, or nasty symptoms at all. The bottom line is: "Damn! This was a good trip!"

    A note on sun exposure: I had a lot of sun exposure. Two days of driving. Two days of kayaking, tubing, swimming, hiking, and generally hanging out in the sun. The only noticeable symptom was red eyes. No brain fog, no fatigue, nothing. Wow! >>

    Now when I say exposure, it needs to be qualified somewhat. Although I was out in the full sun, I kept covered up as much as possible. When kayaking for instance, I wore, from the toes up: neoprene boots, upf 50+ full length swim pants with upf 50+ nylon blend fishing pants, a upf 50+ nylon blend long sleeve fishing shirt, a pfd, a SunTamer hat with legionnaires cape. Eyes protected with two pairs of glasses. Face protected with beard and neutrogenea spf 45 with helioplex (good stuff). Oh yeah, sun protective gloves (fingerless). Last year with similar clothing I got slammed with sun reaction.

    So now it’s back to phase 3.

    Ken

    "Do not spoil what you have by desiring what you have not; but remember that what you now have was once among the things you only hoped for." Epicurus Greek philosopher (341 BC - 270 BC)

    "It is difficult to say what is impossible, for the dream of yesterday is the hope of today and the reality of tomorrow." Robert H. Goddard US physicist & pioneer rocket engineer (1882 - 1945)

    see also
    Ken Faucher: Phase 3 update - 2 year progress
    KFaucher/ Ken:  CFS 20 years: how much better I can get.
    KFaucher: CFS: the MP does work! 6 months on the Marshall Protocol!!!!
    KFaucher: CFS: CWD and back pain
    __________________
    Ken: "good days & bad days & going half mad days" J.B.
    CFS 20 years 25D=30 1,25D=57 8/2/04; 25D=19 1,25D=48 12/2/04; Avoid Sun 9/12/04, NoIR 10/1/04; Benicar 12/2/04, phase 1 12/10/04, phase 2 4/5/05

    Aussie Barb
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     Posted: Tue Sep 12th, 2006 03:08
    Ival RA: Member in Phase 3: Here is my little speech I gave at the Los Angeles conference. Let me know if I can help in any way I'll be glad to talk to anyone to explain what you are fixing to go through. It's not all that bad considering the alternative. 

    Aug 30th, 2006: Finding a doctor to help is one of the hardest things at the beginning. I gave up on the rheumatologist and found a general practitioner to help me. I am not cured yet but I feel I am getting very close.

    Hi my name's Ival Meyer

    I
    was diagnosed with rheumatoid arthritis in 2001 with symptoms and a rheumatoid factor of 56. I started down the usual path of going to a rheumatologist where I was first introduced to low dose prednisone, which worked great for about eight months. After eight months my arthritis came back twice as bad. I went on a second around of low dose prednisone which did absolutely nothing.

    My rheumatologist suggested immune suppressing drugs, which could prevent joint damage, like methotrexate and Enbrel. Before starting the immune suppressant drugs my doctor gave me a shot of prednisone.

    The feeling of being insane is the best way to describe that day. Nothing on the marshal protocol has ever been as bad as that day of insanity. That is when I decided to take charge of my disease.

    What I found by researching my disease was depressing. The side effects of the immune suppressing drugs were totally unacceptable to me. Some of the side effects are multiple sclerosis, lymphoma and you are susceptible to tuberculosis and other infections.

    The diseases that run in my family are a carbon copy; my oldest sister has multiple sclerosis; one of my grandmother's died from lymphoma and my father is a tuberculosis carrier. That is why I chose this path of treatment

    In my research; I found many scientists that believe these illnesses were caused by a chronic infection. The Road Back Protocol developed in the seventies and still popular today uses pulse antibiotics for treating rheumatoid arthritis. Sounded good; better than the alternative; so that's where I started. During that time it became obvious to me that this was some kind of infection.

    My results were good on the road back and it slowed it down but it never really brought me to a remission or a cure. During further research I found the Marshall Protocol on the internet and they were going to have a conference in Chicago on autoimmune diseases. Best decision I ever made was going to that conference. This is when I truly learned about my disease.

    The hardest thing about starting the protocol was finding a doctor. After six tries and about an inch thick of paperwork I finally found a doctor that would help.

    The first two weeks on Benicar definitely helped on reducing the inflammation in my joints and muscles. Within the first three months; I was able to stop all of the NSAIDS. For the past six months I have only needed the marshal protocol medications.

    The problem was starting the antibiotics is it does not make you feel better. You have to be ready for a long hard year dedicated to your recovery. When I started the antibiotics my joints were still one of my main problems but I started getting a lot of symptoms like the other auto immune diseases.

    I will not go into details on all the herxs that I've had but I've had just about every one of them to some degree. I definitely had a lot of sub clinical inflammation. Some days I would have lung herx so bad you would think I had Sarcoidosis, yet I've never had anything show up on my chest xray .

    One of the most important things in my recovery is The Marshall Protocol web page. Whenever I started questioning myself if this was the right path to travel. I would read the posts and all the scientific evidence to regain my confidence.

    Your recovery is very slow; a lot slower than one would like but you cannot change the science behind your disease. One day I would be worrying about my hip or my feet hurting and then notice my hands had not hurt for weeks. My ankles were no longer swollen . You just slowly continue to improve.

    My improvements consist of skin, muscles, eyes, brain fog, IBS, neuropathy, lower back pain and Raynauds syndrome. All of my joints have healed or improved dramatically. My rheumatoid factor which started out at 56, is now down to 16, I bet it eventually goes to zero.

    I caught my disease very early and I am very lucky to have found the Marshall Protocol. I am not going to get up here and tell you that I had deformed hands and they are now straight. My feet show signs of arthritis but they do not hurt any more. I can get up in the morning and walk across my tile floor with no problem that is something I thought I would never be able to say again.

    I used to walk like an eighty-year-old man now most of the time I feel like I am eighteen. From what I have witnessed on this protocol. I know this can take me to a full recovery.

    The fourteen months that I have been on the marshal protocol has taken me from not being able to work and planning on going on disability to rejoining the work force by the end of this year. It has not been easy it will probably be the hardest thing you will ever do in your life.

    Everybody has to make up their mind if it is right for them. For me the decision was easy a lifetime of treating symptoms and getting worse or believing in the new science and a possible cure.

    I started in this with an open mind and the termination to find out if this was true. I can honestly say everything that the marshal protocol has predicted in my case has been true. I am well pleased with my recovery.

    At 47, I now have a future of living a normal life without the pain and the deformation of rheumatoid arthritis. Trevor Marshall's research and understanding of these autoimmune diseases have definitely opened the door for a fascinating new treatment. I would like to thank him for sharing his knowledge with me; which was allowed me to be in the first group of people ever to walk through that door.
    Thank you

    see also:
    Ival: RA: I've got my life back
    Ival: RA improvements..8 months ... 1 year....
     ____________________
    Ival: MP 4/12/05/Benicar Q6h Ph1 4/26/05/ 25D13ngml 125D44pgml Ph2/6/1/05 Ph3/1/25/06 diag RA 2001 Male 46 Probiotics

    Aussie Barb
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     Posted: Tue Sep 12th, 2006 03:23
    murcierashley: Maria: Sarcoidosis: I've come a long way from the woman who was about to undergo bilateral lung transplantation.
    Member in Phase 2

    Aug 6th, 2006: Life is Good.

    In July 2005, I was very excited when I "discovered" the MP.  I couldn't wait to start.  

    The Maria prior to the MP felt old, sad, sick, fatigued, hopeless, and weary. 
    - Now, I feel young, energetic, happy, and optimistic.  I don't dread making the bed, walking up the stairs, cooking, or doing the laundry.   All of these things used to completely exhaust me. 
    -At rehab, I work out on the elliptical on level 4 for 30 minutes and I walk/or ride a bike for 30 minutes at 3 mph. 
    -In addition to lifting my 2 year old, I lift weights at rehab.  I'm loving life again.  At one point, just walking across the room was like walking through knee deep mud. 
    -It's as if a weight has been lifted off of my back. 
    -I feel like a whole person, not an invalid.  It's painful to say, but that's what I had become.    

    I can't wait to report my progress to my doctor.  I also plan to visit my former pulmonologist.  According to him, I was beyond any hope and had one foot in the grave.  I don't plan on dying any time soon, at least not from sarcoidosis.   

    A whole lot of people have been praying for a miracle for me to get well.  Well the prayers have been answered.  Thanks Dr. Marshall and thanks to your wonderful team and volunteers.

    Maria

    December 2006:
    I feel better than I've felt in years.  One of my friends asked me to compare how I feel now to how I felt when I was on prednisone.  There is no comparison.  I'm able to do more now.  

    _________________
    Maria: pulm sarc(Dec 2000) 3L-6L O2 24/7; dyspnea (severe) chest pain cough fatigue rash; 8/05 1,25D-43 D25-22; Ben 40mg/q6h 9/12/05) Mod Ph2-2/2/06; Tramadol(50mg)& Guaifen as needed; NoIRs avd D & sunlight; 8/06 25D-10

    Aussie Barb
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     Posted: Tue Sep 12th, 2006 03:45
    Sedona: Sarcoidosis: I am a year past their transplant date and far better than I was when they recommended it. What I luv about the MP site is the support. I need to be told to slow it down cause I'm a speedster by nature.
    Member in Phase 2

    Sep 9th, 2006: I've had some really good days.
    - My energy level has been tremendous. I've been taking advantage of this and took two trips to Atlanta, GA. After I walked at least 15 blocks.

    My breathing only got labored when I had to course a hill but I braved it, braced myself, and stayed the course. I'd stop and take it easy when I experienced dizziness. The next day I could hardly move cause the muscle in my legs haven't seen that much action in a long time. But I didn't care, I walked 15 blocks which I haven't done in three years. The muscle pain felt good; very much like a good workout at the gym.

    -I am really happy and so is my hubby. He kept reminding me to let you guys know how much better I was and all that I was able to do lately. We're both blown aways by my improvement.

    I am going to make an appointment with my previous doctor so that he can see my improvements and possibly offer this treatment to his other patients. I have to at least give him the opportunity to see what the MP has done for my health. I am a year past their transplant date and far better than I was when they recommended it.

    I will keep you guys posted on the outcome.

    Much love and success to you all.

    Sedona - ready to start Phase 3. empowered.
    _________________
    Sedona: Inflam Disease|Neural/Lung Sarc diag via biopsy 9/96|off Mtrex 5/04|off Pred 8/05|off Silver Protein 400ppm 11/05|Cut D:02/14/06| MPh1 2/19/06; 1,25D=60pg/ml:25D=27ng/ml;Ben 40mg/q6hr;2nd week mino 100mg/q48hr

    Aussie Barb
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     Posted: Tue Sep 12th, 2006 03:54
    jillbc wrote regarding her husband the Fisherman: Sarcoidosis: recovering on MP after recommendation of a lung transplant: Member in Phase 2

    Sep 10th, 2006: Very soon my husband 'the fisherman' will have his year's anniversary of the doc's recommendation of a lung transplant too.  They did a full pre-transplant work up and told him his lungs were too scarred for a sucessful transplant.  And kindly told him to go home and put his affairs in order and make some "tough decisions" about what we would do when he went on the ventilator.  He told them "I'm going on the Marshal Protocol, I'm going to get better." That raised an eyebrow or two. 

    Now his recovery is raising eyebrows. Its been almost a year and he is doing well and getting stronger. Lung herxes are the hardest.  We are so pleased another person has been able to forgo that terrible surgery and not-so -promising outcome on the MP.

    For those of you considering the MP and those who are just starting, the fisherman wants you to know that he was "on the way out" a year ago and now he is doing extremely well.

    Cheers and take care
    jill:) and the fisherman:cool: 

    see also
    previous improvements post
    1 year update
    TRANSPLANT talk (preMP)
    __________________
    Fisherman: Dx. Lung & skin sarc 1983, hospitalized with viral pneumonia July'05, Pantaloc 40mg q48h, now off Lasix 40mg OD; Began Olmetec 40mg q6h 10/19; Phase 2,12/26. Mod Ph2 07/02;D's in the 10's. Oxygen prn daytime, 2L at night down from constant10L in Oct.

    Aussie Barb
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     Posted: Tue Sep 12th, 2006 03:57
    John McDonald: RA: Member in Phase 3: My RA "remission" is more secure now. After 1 year I am very happy with the MP and I look forward to more progress and a full cure ahead.

    Sep 11th, 2006: I have been on the MP since mid September last year.  I am amazed again, on phase 3, how a trifling amount of antibiotic can have such a strong impact.  I may be the only MP patient to start this protocol from what was arguably an enviable state of remission.  Road Back AP had substantially given me back my life.  Nevertheless I have had profound herxing on the MP and I have since made some nice gains. 

    I have taken 3 long breaks from herxing this year to accommodate 3 overseas trips.  This has slowed my healing but it has also given me a chance to measure my progress and I am pleased.  My RA "remission" is more secure now.  Before it was unstable and more of a day-to-day thing.  Now if I quit all abx I think I would be symptom free for a long time before the microbes gain ascendancy again. 

    -On the MP I seemed to have cleared up an eye infection that I didn't know I had, and which the Road Back AP didn't seem to touch. 
    -My GI issues cleared up early this year and my cognitive abilities feel sharper and faster, as though I am again in my thirties.

    I started MP from (arguable) remission.  My goal has been to herx my way to a full cure, but without ruining the goodwill and cooperation of my employer or family.  The MP herxing has impacted both, but so far
    -I have been able to manage herxing while working a demanding job and while husbanding and parenting.  I have made some choices.  The outside of our ranch property looks very bad and I have neglected quite a few handyman duties around the house.  Career-wise by now I should have moved on to a better paying and more interesting position, but in my current job I can afford bad days. 

    My gains over the last year have been fantastic, and now I am definitely looking forward to further gains.  A few times I have accidentally taken two Benicar instead of one with zero ill effect.  After a year of this I wouldn't be afraid of the Benicar, I am afraid of leaving any of the microbes that gave me RA.

    After 1 year I am very happy with the MP and I look forward to more progress and a full cure ahead.

    May 2007:
    I have had very little arthralgia on these last cycles; I mean barely detectable.  I have a ways to go yet on phase-3 but it is getting harder to elicit RA herxing.  I am telling friends that I seem to be nearly cured of RA and that I continue with the MP to clean up other bits now, especially the microbes in my brain.  Over the weekend at a soccer tournament I watched Briar (10yo) play 3 games and I refereed 4 games without NOIRs.  This was a real achievement.  I ran hard and kept up with the plays and after all that light exposure I had just a bit of eye irritation which cleared with a dose of Benicar.

    Family: our whole family on the MP. asthma RA ADD schleroderma etc.
    _________________
    John McDonald: RA dx June 2002,Mino only 2-2004 to 8-2005 2004Dec17: 1,25D=38; 25D=22; 2005Nov4: 25D=17; 2006May5: 25D below 7; began phase-1 9/16/05, began phase-2 12/11/05

    Aussie Barb
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     Posted: Tue Sep 12th, 2006 07:35
    MS patient is in Phase 2 of MP: Listing improvements as sensation returns.

    "I have been noticing some very encouraging results since early May.
    -I am experiencing increased sensation in my feet
    -I notice the texture of carpet in my bedroom.
    -I am also more sensitive on the tops of my feet
    -I feel like I can feel the insides of my shoes.

    -In general it is kind of a tingling sensation, like after a limb has fallen asleep and sensation is returning again.

    -This increase in sensitivity has persisted and is now moving up my legs as well - again I'm aware of feeling the insides of my jeans.
    -I'm almost more aware of the numbness in my legs - it's like I can "feel" the numbness which is reminiscent of my sensations when I was first experiencing MS symptoms 15 years ago.

    But I'm not the only one noticing a change!
    My massage therapist sees an increase in muscle mass in my legs and at my last visit she motioned that my muscles are behaving more like muscles should behave
    - they stay in place better than they used to as she is working with them.
    -And I notice more immediate and dramatic results following a massage treatment."
    __________________
    This MS patient is in Phase 2 of MP: Listing improvements as sensation returns.

    Aussie Barb
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     Posted: Tue Sep 12th, 2006 07:47
    CFSgirlCFS FMS MCS: Typical Fibro lumps on the inside of each leg at about knee level are gone! and more...

    Member in Phase 2:
    Aug 22nd, 2006: Wanted to report on a "first".
    -This Monday, I had 6 hours of "normal" energy, at least as much as I can remember "normal".
    -Then I felt "normal" tired, which is still way more energy than my best usual CFS day. I could learn to discipline myself, and hopefully next time this happens, I will have the sense to stop.

    -Also, I was talking to one of my healthy friends on the phone, who has known me since 2nd grade and has seen and heard me almost at my worst with this illness, and she told me that I was speaking at a normal speed and using bigger words and sounded like the old me. She said I used to talk at a snails pace and took very long pauses, which I knew. But I hadn't noticed that my speaking speed had improved enough for a healthy person to tell. Maybe one of my CFS friends might notice, because I would be speaking too fast for them to follow, but i didn't realize it was enough of a difference for healthy people to notice. When I'm really crashed though, I think I'm still speaking the slower pace. I still have to search for words sometimes and don't use the level of vocabulary I used to. 

    ADD: Sep 12th, 2006:
    - Cholesterol now down to 198, a total of 101 points down. Yeah! This is what impresses my Doc the most, he can't believe it.

    -Typical Fibro lumps that I had on the inside of each leg at about knee level are gone! They've been gone a couple of weeks and I keep checking every day to see if they've come back - no, still gone. To find a pain point in this area, I have to dig around alot and there is a small pain point in there still, but prevously, whole lump hurt, it was about a 2-3 inch long by 1 in wide "lump". Wish I had a picture - probably the only visible symptom I had. I had these lumps since 1986, 3 years before getting sick.

    CFSgirl.
    __________________
    CFSgirl: 1989 CFS/FMS/MCS, Sudden Onset, Disabled 1990. Esoph.Spasms,Spine/Back pain. Symptoms,too many to list.10/14/05 started Ddiet/sun avoid. 10/20/05 D-25 19, D 1,25 49 10/24/05 glasses. Start Benicar 11/05/05 Start Mino 11/18/05 Current Benacar 40 mg Q6h, Mino

    Aussie Barb
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     Posted: Tue Sep 12th, 2006 08:08
    Linda Jones LYME: Being able to live without pain, being able to think more clearly than I have in ages, being able to see and move without problems, having some muscle endurance, are HUGE improvements for me. More importantly, I feel motivated to do things, because I have energy that I need to find something to do with.

    Member in Phase 2: Jul 30th, 2006:
    I haven’t posted a progress report in a LONG time. I’ve just been focusing on getting well. But I just wanted to report on something significant that my husband and I realized yesterday. 

    -I haven’t taken any kind of pain killer in months.
    I do have discomfort, and sometimes pain with herxing, but it is insignificant enough that I can just live with it and ignore it for the most part. And it suddenly dawned on me that I no longer have the constant non-stop deep bone pain, day in and day out that I’ve had for years. The pain that I used to have was unbearable unless I took pain killers every day. And at times the pain killers were not enough. So to live relatively pain free like this without pain killersof any kind is a major accomplishment.

    -I have much more energy.
    We got some three little kittens back in May, and I had enough energy to pour myself into building them an elaborate cat tower, a furniture style wood litter box cover and a special counter that we can put their food up on. It took me weeks to do, but I did it, and did a good job. And I was still able to manage to actively play with the kittens every day, add their daily care needs to my list of to-do things, and cope with the normal day to day things I manage to do to survive. I still have to watch my energy, and I still have to take frequent rests. And some days I still have NO energy for anything other than basic survival, but the fact that I was able to accomplish what I have is significant. 

    -I’ve also been able to do more cooking from scratch, which has significantly broadened the variety in my diet. I have the energy to cook regular meals every day now, including food for my family, and not just my own specialty diet, which is a huge improvement.
    -Nobody else has had to cook for me in months. It’s such a relief to have good cooking skills again and to eat descent cooking. Convenience foods are TERRIBLE! And none of my family members are any kind of cook to speak of.

    -I’m about to embark on building a play house for my granddaughter for her birthday several weeks, and I don’t have any doubts that I will be able to accomplish it.
    -I can see well enough to have confidence to use power equipment,
    -I have good small muscle control with my hands and coordination, and
    -I can think through analyzing what steps to take to get to the goal, which is also something I couldn’t do months ago. But more importantly,
    -I have the endurance to be able to manage to control the power equipment safely, and to do the sanding and handling heavy pieces of wood, as long as I pace myself.

    -This spring I planted a garden for the first time in years. I go out after dark to maintain it and harvest things. But I have managed to keep up with the gardening work required. And I have been LOVING the home grown tomatoes that we have been picking. Store bought tomatoes, even the best quality vine ripened tomatoes taste like cardboard in comparison to home grown tomatoes.

    Before I started the MP, I struggled each day just to eat and do limited personal hygiene. I frequently didn’t have the energy to cook meals, and I had to use a lot of no-preparation or limited preparation required kinds of foods if I wanted to be able to eat, unless my family took pity on me. I didn’t have enough small muscle control in my hands, or strength to even eat without difficulty, let alone be able to do anything as demanding as holding and operating wood working power equipment. I was very limited in what I could do. Now I can pretty much do whatever I want, as long as I pace myself, and stay out of the sun and bright lights.

    This doesn’t mean I’m well by any means, and I’m still very definitely disabled in a number of ways, though I'm managing to compensate for the deficits. I still clearly have a lot of other things going on that need to improve  before I will be anywhere near the state of health I had years ago. I’m still not as active as my other family members. But I can see clear improvement that doesn’t disappear, but has been steadily improving for months now, even WITH the herxing.

    January 2008:
    I’ve been working around a lot of dust this week, moving some furniture and things around that haven’t been dusted under for years in order to create more space and get rid of a lot of accumulated junk. And so I’ve been having a lot of irritation in my eyes and sinuses from the dust. I took some extra Benicar and extra Benadryl at bedtime for that and that has helped. Amazingly, normally this kind of dust exposure would have induced hives for sure. And I’ve had none. I’ve had to really pace myself to keep from overdoing it, because the furniture moving is more work than I’m used to. But so far I haven’t felt the kind of rebound fatigue that I used to get from doing extra work that would last for days afterwards. Now it’s just a matter of resting for a bit, and then I can start again. Not that I’m going to make a habit of over-doing it, but it’s so nice to finally get some extra work done that’s needed done for ages.

    ___________________
    Linda Jones: Lyme Thyroiditis IBS MVP Fibrocystic Breast Disease PTSD MCS ill 29+ years/SAM-e Claratin Probiotics Psyllium NoIRs Beni comm 11/23/04 Q6h Mino100mg comm 12/22/ Sept04 25D=19 1,25D=62.8 Sept05 25D=7 1,25D=39

    Aussie Barb
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     Posted: Wed Sep 13th, 2006 19:56
    BARNEY: Sarcoidosis: ATTENTION ATTENTION ATTENTION
    Member in Phase 3


    DAY 619, 9/12/06, NO ACIDOP, NO PAIN PILLS, EVERYTHING NOT ONLY TOLLERABLE BUT 'OUT OF THIS WORLD' EXCELLENT

    Tuesday (yesterday)...I left at 1130am to drive 60miles one way to visit with her...I wore a denim long sleeve shirt, levis, socks/shoes, a sleeveless shirt under denim shirt, my Noirs,  my 5" brim hat (no cream or anything on my face) and my black leather gloves. I wore my gloves all the way down because the sun was on the steering wheel (and my hands) but...did not wear the gloves the rest of the way.

    We went to 4/5 stores shopping a little after I arrived there...walked thru all them and went out for dinner....after arriving back at her house...I took a 1 hr nap before proceeding home after dark. Did not arrive home until 930pm (60 miles home also). I was in a lot of sunlight yesterday and no reactions. WOW.

    That turning point that Trevor talks about...I think I got there....

    My eyes see so clearly it is unbelieveable....the colors are absolutely beautiful and the tv and all else is so clear....my head is so clear I can actually think...the best in my entire life....it is WOW....wonderful.

    I had no herxes or sun flares...I enjoyed myself without being brain fogged at all and clearly knew what I was doing.

    I was and am not any tireder than a normal person would be.

    I knew MP worked but MPers I am here to tell you to hang in there, you will not believe how good this turning point feels....absolutely out of this world. I am really feeling like I can make it as a normal human being and really function as one.

    The last 30 miles I ran into large rain drops, pea sized hail, water so deep on the road that the car wanted to hydroplane, lightning so bright you could not see the road when it flashed......and thru all this......I felt nothing but peace and slowed down to 35mph and just took my time making it home safely to no electric...wow...

    My mind and soul are still rejoicing, I am so overjoyed that I could shout it from the rooftops that MP is the only thing to do.

    I will continue current combo and then complete the rest I have not completed yet, knowing that I am going to enjoy the rest of my life.

    HANG IN THERE MPers, MP REALLY WORKS AND THE TURNING POINT DOES COME!!!!BARNEY:D

    March 07:
    Sugar is the best it has been in months...it is now below 200.
    Out about 4 hrs. in and out of the sun. No apparent problems from sun exposure.
    Here's to you passing that wonderful MP point. You will just be blown away at how great it feels.

    more:
    WHAT A WONDERFUL LIFE!!!!!!!!! I believe that was the name of a movie. Well, anyway, it is the way I am feeling about the past 3 months. MP has treated me well. I am able to almost perform like a 'normal' person. Thank you Trevor for all your hard work....it has certainly paid off for me.

    I am feeling great...out and about whether it sunshines, is cloudy, or rains...you just cannot imagine how elated I am. I feel like I am floating on cloud 9. just so happy.

    more:
    What a trip!!! 14 hrs on the bus, mostly at night but part of it in the day time. I tried to sit on the side where the sun would not shine on me when it reached day time. Stayed with another friend and my son drove me home after a week. Had a great time with absolutely no problems with doing MP. It is a great life now. I would do this forever, if I had to.

    Wow!!!! I just cannot believe how great I feel.

    Hope all of you MPers are proceeding along on MP with great improvements. The first 2 yrs are the hardest.

    HANG IN THERE, WE WILL MAKE IT!!!BARNEY:D
    _____________________
    BARNEY
    : 64 joint sarc 77 skin sarc 80 lung sarc 81 asthma migranes 95 rkidneyremoved(cyst) diabetic gall b removed 96 total hyst(cysts endom) 01fibro 04 D's(53/25)05(52/22) BENICARQ3HRS1/05, MINO2/05, 2NDANTB4/05-6/05, 3RD ANTB 6/05 CURRENTLY PHASE3 3abxcombo

    Aussie Barb
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     Posted: Thu Sep 14th, 2006 22:16
    debbie y: Sarcoidosis, Diabetes 1 -insulin pump, celiac sprue, IgA deficient, thyroid, MVP, Dupuytren's contracture. I am a member in phase 2 and doing very well. I have several autoimmune diseases.  My doc has been impressed with my progress. 

    I started avoiding the vitamin d foods and pretty quickly felt better but really felt better when I avoided the sun.  I noticed that my rash spots stopped spreading, the ones I had were fainter and and did not progress.  And, since I've been on the MP (8 months now), my ACE is normal, blood count normal and I have NOT HAD a spot appear and the ones I did have are so faded away, I am the only one who knows where they were.

    I have a Dupuytren's contracture on my index finger.  One amazing thing I noticed after my FIRST dose of Phase 2 is that the pain was almost completely gone and my finger which is normally bent, was able to be straightend out completely.  My husband and I stared at this finger for almost 20 minutes before we turned the lights off to go to sleep!  I could bend and straighten it without any problem.  I could not straighten it out at all before.  This finger has been like this since last year and before the MP was started.  I am now fascinated and may be able to cancel the surgeon's appt. and just give this more time as I have just begun Phase 2.  Also, the pain in my finger has decreased alot and is straightening out on its own. This protocol continues to amaze me!

    One thing that has been a big change is my blood sugars.  I have been having consistent normal readings 95% of the time. This is an unbelievable change.  Also, I am NOT having any "rebound" high sugar levels if I do have a Hypoglycemic episode. 

    The other change since I started Phase 2 is that I have been able to lower my insulin dosage for the first time since my sarc was dx'd in 2004.  I am very pleased and excited.  After 44 years of diabetes, this is really interesting.

    I have always had severe  palmar redness with spots on both hands since my 20's.  In the middle of both palms I am now having clearing in areas and they are normal colored.  no rashes. 

    Also, my glasses are getting too dark for me so I have had to order the 40% Noirs for indoors.  

    I am very excited about the blood sugars.  I would deduct that the inflammation is lessening. 

    I would like to hear from other diabetics who are on insulin to see if they have noticed any changes in their blood sugar control.

    My Dr. was absolutely surprised with my lab results and so was I.  For the first time since my sarcoid was dx'd in Jan 04, my A1C has returned to normal.  My thyroid has remained STABLE since the MP and I have dropped 2 doses.  My WBC, normal, and for the first time since last June, the ACE is in normal range.  Triglycerides, cholesterol, electrolytes, etc all normal.  The hemoglobin and hematocrit which had strangely dropped alot last time, has returned to normal levels without intervention.  It had to be a herx reaction.  I have also been able to lower my insulin dosage by several units. I haven't had results like these for such a long, long time.

    I am feeling totally euphoric and blessed right now. 

    My stamina has definately improved.  Continue to do well.  No more heart palp. Hanging in there and feeling so much better.

    All my best,

    debbie y:)

    November 2006:
    Saw doc yesterday, my thyroid level remains normal.  I have NEVER had a stable thyroid since diagnosed in 97.  It has remained stable every since I started the MP and I have dropped several dosages.  Even my magnesium is normal, also a first.

    December 2006:
    The biggest change for me is after being on the MP, I do not have those high "rebounds" after a hypoglycemic event.  I haven't had that luxury for years.  

    March 07:
    I had my first bone density scan done since being on the MP and when I got it back, improved was underlined by the dr.  My bone density had increased by 3.5%.  This is post menopausal, no vitamin D and no bone "building" meds.  This is exactly what Dr. M has written about!  I also had my D- 25 checked recently and it is 4.

    May 08:
    I have also noticed that my toenails on both feet are changing.  I have had diabetes for 46 years and I have deep ridges in great toes but, the ridges are disappearing and the nails are becoming smoother.  I think this is SIGNIFICANT for a long time insulin dependent diabetic. 

    see also
    Debbie Y:  My life is important to me and I want to live to be an old woman
    debbie y ready for ph 3
    ____________________
    Debbie Y: Ph1=2/2/06 SARC lungs,skin,3/04, D.M.1 -insulin pump, celiac sprue, IgA deficient, thyroid, MVP, 2/06 25D, less than 7, 1,25-29, Wearing NOIRS Beni 40mg q8h, ph2 6/06 Ph3 Nov 06

    Aussie Barb
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     Posted: Fri Sep 22nd, 2006 20:55
    Gary Member in Phase 3: Eyes:  Yesterday afternoon, before taking my abx, I did notice one symptom getting better that really surprised me

    Starting about 10 years ago - about age 40 - I started using reading glasses, first as weak as they came, but soon up to +2.50 or +2.75.  About 4 years ago I started needing some very mild correction +1.25 for distance.  Even things very far away were clearer with the +1.25, and they were essential within a typical sized room. I still needed the +2.50 for reading.

    Yesterday when leaving work, I noticed some things in the distance weren't clear.   So I took off my glasses, and whoo-hoo!!  things were clearer with just my good old eyeball.   Currently my eyes alone are only clearer than the glasses for objects over about 50' away... but its a  start!.

    Gary  
    Freddie Ash: great eye report 18 months of MP
    Testimonials to improved vision with the MP
    ____________________
    Gary: dx Sarc 4/00- lymph biopsy. Neuro, lymph, eyes, fatigue, liver, kidney. Benicar 5/04. Mino 6/04, PH2 8/04, PH3 12/04. Sig herx Few non-herx symptoms except stuffy nose.

    Aussie Barb
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     Posted: Tue Sep 26th, 2006 01:15
    Ms Dale wrote her story of a true miracle. How do you define a hero?
    Sarcoidosis: MP Nov 2002


    The years had not been easy.
    Three children stood watch over their mum, whose life was slipping away.
    A once vibrant and energetic woman, now physically destroyed from a disease called Sarcoidosis, full of challenges to maintain any sense of "normalcy" from a wheelchair and disease ridden body for these young lives. Simple little things in life, had now become a grueling task, leaving her exhausted and her children frightened.

    The treatments of many that did NOT work, the disease that played by no rules, having no bounds as to where it attacked next, left them with little hope of a mother being there to witness special moments in their lives as they matured. Few people can understand that kind of bravery unless you actually see it in a child's eyes.

    Then...came word of a new treatment for Sarcoidosis, and defying doctor's expectations, the mother and children persevered. The struggles of medical issues in the past, lightened with each phase of this new treatment, and the children's tears were now happy ones as they watched life begin to pour back into their mum!

    On September 9, 2006, the mother proudly walked, yes WALKED, her daughter Jennifer down the aisle to be united in marriage.

    In December 2006, the mother will witness her daughter Jesyca become a mum herself, as she gives birth to her own daughter, Sophie, who is 'angelic' looking on the Ultra Sound!!

    And truly a moment to be treasured, of a wonderful young man and son, Kirk, who took his mothers hand in his, and danced with her at his sister's wedding, leaving not a dry eye in the room. A young man whose childhood recalls no memories of a once vibrant and energetic woman, he is creating his own special memories now...

    His smile said it all, the moment of a true miracle, made possible by the hero in their lives, Dr Trevor Marshall and his development of the Marshall Protocol.

    Sincerely and Thankfully,

    Ms Dale
    and children - Jesyca, Jennifer, and Kirk

    Ms Dale re her MP Journey 

    The Many Faces of Recovery pics of Ms Dale, Meg, Belinda, Lowelle

    Ms Dale re progress on MP managing Family commitments


    How Do You Define a Hero a pdf with pics of Ms Dale. to print.
    __________________
    Ms Dale: Sarcoidosis: MP Nov 2002

    Aussie Barb
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     Posted: Thu Sep 28th, 2006 20:56
    shamutooth: re MCS and Insomnia .. This is the point I have been looking for for the last 20 years, and I consider myself fully functional, and am looking forward to functioning at even higher levels.

    Sam: Member in Phase 3 wrote:

    After taking an abx holiday for a couple of months, and I have changed my antibiotic combination, my MCS,and insomnia are the best yet with no fatigue or any other symptoms. My innate immune system seems to be functioning at a very high level.

    I'm working in an office enviroment with lots of cologne and perfume around,W/O HARDLY ANY SYMPTOMS WHATSOVER!!! I'm able to work inside W/O any glasses, and am able to drink coffee again W/O any side effects whatsoever.


    This is the point I have been looking for :cool:

    May 2007:
    Amazing how good health gives absolute peace to the soul :):) This spring has been the best one of my life, and I just want to thank Trevor and the entire staff for the miracle that you've given to me. May God bless you all.

    Sam

    see
    previous update
    Sam Insomnia
    _________________
    Sam: MCS CFS IBS insomnia anxiety depression started Doxy July'04, MP Sept. 04; Benicar 40mg 3/day; Phase 2 started 2/2/05; 6/28/05 D results 25D=29, 125D=47; 11/13/05 25D=10 Phase 3.

    Aussie Barb
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     Posted: Fri Sep 29th, 2006 14:49
    Betsy G wrote of her recent improvements in Phase 3.

    I am able to think clearer.
    Vocabulary is better. Still much searching for words but not as many instances of the wrong word coming out.
    I have an increase in energy
    I have a new 'do.  I am able to hold a hair dryer again! I have to go for short periods at a time but this is quite an improvement over combing my hair in stages ( a bit at a time).
    Muscle weakness continuing to improve as is walking, coming upstairs. 
    Intestinal difficulties improved. 

    I rode my horse yesterday. Really rode her for about 30 minutes--walk, trot, a bit of canter. WOW. Totally stopped riding over a year ago and it has been at least 18 months since I have cantered her. WOW. I actually had muscle reponse when I asked for something to move (my body, not the horse). What a difference. I could actually feel her beneath me and I could tell my leg(s) to move and it did. WOW. I cannot believe the difference and it is hard to describe. Before, not only would my body not respond but I couldn't even feel the message going through--if that makes sense. Another way--I couldn't even feel my body (whichever part, leg, stomach, etc.) TRY to move. It is like I never even asked a muscle to move. And yesterday, I asked, I "felt" the brain deal with it:D and then I felt my leg respond:D:D Oh, happy day!!!!!!!

    I have seemed so much stronger lately and I have been riding her in my mind for quite some time, I just had to try. I just felt like my body was ready, if that makes sense. This is a giant step forward for me.

    Oct 12th, 2006:
    Just had a thought. When "counting my blessings" yesterday, out of the blue, I thought back to when I was working (now almost four years ago), and how I felt ill all the time. Since I was dealing with the public, I just thought I was being exposed to every "bug" out there. I always felt like I was "coming down with something" and I would fight back with vit C, Sambucol, etc. I thought I was doing OK, thought I was keeping myself well and on my feet.

    So, it was good to recall that I don't have the sore throat, swollen glands, sinus infections, etc., that were so routine then. All good thoughts.

    February 2007:
    The last couple weeks I have been working on paper--trying to catch up the last 5 years or so! Organizing papers for taxes, organizing financial records, etc. No where near finished but I have a start and I feel good about that. I am able to work on these tasks with a clear mind--hooray! I am also reading financial planning books, etc., and I am able to comprehend what I am reading. These same sources I could not read, understand as recently as a year ago. So, progress has been made.

    Physical symptoms: lesions are starting to heal on back, stomach, etc.. One new one. Numbness of hands, feet, lower legs often wakes me at night. Vivid dreaming the last few weeks; very detailed, realistic dreams.  Neck, back, shoulder pain is getting better. More physical energy. Legs are stronger!

    Betsy

    February 2008:
    I am getting more active and doing much much more. So far today--shoveled snow at 5 a.m.(keeping in the dark), 3 loads of laundry completed, balanced checkbook, reading MP articles, posting, etc. Last year I might have done one of the above for the entire day. Unbelievable!

    April 2008:
    About 4 days a week I go out to see my horse. This takes 2-3 hours. I have ridden her twice a week for the last 3 weeks--up from zero a year ago. I use K cream, hat, gloves, NoIRs, etc.
    Mood has been good--hopeful--for the last month plus. This is a significant change for me!
    All the hours of sorting through 30 years of paper paid off. Our home is organized and I don't feel completely buried in the mess! I take this "clean out" as proof of my improving health especially as it relates to all the neurological symptoms. Thank you MP!!


    May 2008:
    My lungs went from 2/3 of each lung being scarred to normal lung x-rays. Quite an improvement!!! SOB sxs are rare at this point. I am also not in bed all day. I am using my increased energy to work around my horse. Just brushing, cleaning her or tacking her up were things I could not do at all 3 years ago.
    __________________
    Betsy: Dec 03 Sarcoidosis by lung biopsy, muscle joint skin 25D-10(Dec07). Nov04 Benicar. Ph1Mar05 Mino,NoIRs, K cream,windows covered. Ph2Jun05. Ph3July06. Wellbutrin Vit E

    Aussie Barb
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     Posted: Tue Oct 3rd, 2006 01:32
    Lowelle Messner: Sarcoidosis: began MP in June 2003. I am able to live my dream of galloping x-country at The Kentucky Horse Park!

    Member in Phase 3.

    Hello Betsy G, from another horse person. I just returned from The Kentucky Horse Park where Tess, my horse, and I took a 7th place in the Recognized Beginner Novice Combined Training Event, which was put on by the Keeneland Pony Club. There were 20 horses in our division, so I was very happy with our experience.

    I, too, never thought that I would be riding, much less jumping fences, again. It is such a wonderful feeling to communicate to your horse with your legs. I understand just how you felt. I remember riding in my mind, too. My appreciation for life and this second chance to live it is never taken for granted. Without the tireless work done by Dr. Marshall, Meg, Belinda and all of the other moderators, I would not have been able to live my dream of galloping x-country at The Kentucky Horse Park!

    Congratulations! The best is yet to come. Lowelle

    ____________________
    Lowelle: Began the MP in June of 2003. Sarc diagnosed from biopsy of lymph nodes. Sarc in liver, spleen, lungs, neuro and lymph. Begin numbers: Vit. D=13; 1,25 D=64. Recent numbers: Vit. D-12; 1,25D=30. Benicar; 100mg-minocylcine-every other day;

    Aussie Barb
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     Posted: Tue Oct 3rd, 2006 01:32
    Guss Wilkinson Sarcoidosis Psoriasis: wrote: I am about three years on MP. time for an update. now in full training for my 5th Dan Black Belt in Karate.

    Member in Phase 3.
    Hi All
    I can’t remember the exact date that I started the MP, I just know that it was in October 2003 – that means that I am at or about three years in.

    Therefore, I think that it is about time for an update.

    I exhausted herx on my second time round of Phase Three antibiotics.

    I reported last time that I was feeling pretty good – my only symptoms left were a little psoriasis, runny sinuses and a phlegmmy cough. I can now report that I still feel really good, my phlegmmy cough has gone and my sinus flow has reduced from the tap being full on to an occasional drip.


    As a result, my tolerance to exercise has increased quite dramatically. I am now in full training for my 5th Dan Black Belt in Karate which should happen in the first couple of months into next year (Helena is taking her 4th Dan). My last grading was just over 7-years ago and I remember that it nearly killed me…the bugs must have been wearing me down then without me knowing – my lack of fitness at the time did surprise me given that I had been training so hard (little did I know!!).

    So what does all this mean for me? Well, I came to the realisation the other day that I don’t really give my Sarc too much thought any more. I glance at the MP website occasionally just out of pure habit and it is interesting to note that most questions that are asked these days have been asked before – i.e. not many aha-feelings on my part any more.

    Does this mean that I’m done? No, not really – I still have a couple of spots of Psoriasis left and I shall push on until these are completely gone. The Psoriasis is my gauge.

    It is spring now in NZ and I am looking forward to having fun with my kids (who are teenagers now) at the beach with some swimming, surfing and barbecues...not that I will be sunbathing to get a tan or anything like that – those days are over for good. I don’t think that I could ever relax again lying in the sun knowing what is going on. If I find that I am reacting negatively to the exposure that I am contemplating then I’ll modify my behaviour again.

    We went on a fantastic family holiday a couple of weeks back to the Gold Coast in Australia.  The holiday was very successful and my energy levels are very high – my family have nearly forgotten my grumpy, sickly and lethargic cocooning days.

    I have a new job which I start in two weeks with another university as a Senior Business Analyst.


    One last interesting thing that I have noticed recently is that my tastes seem to have changed. I have found that I am now able to eat foods that I have never liked previously (such as certain cooked vegetables and mushrooms etc). It is quite a delightful discovery and I have no idea if it has anything to do with my newer wellness.

    That’s all I have to report – if anything changes I’ll keep you posted.


    December 2006:
    – still feeling great and full of energy. The herx I am experiencing now is a very mild case of minutely bumpy skin on the right cheek (the face, that is ;)). I have occasional mild pain in the lungs which radiates across my back – but it barely gets my attention. Sometimes I notice stiff heels when I wake up which makes me walk as if I have flippers on my feet – again, nothing irritating.

    The little psoriasis that I have left is proving stubborn and hasn’t reduced.

    I seem to be losing more weight without really changing my eating habits – I am now down to 76 Kgs – but all is good!

    My fitness is also improving and there is no hint of that annoying phegmmy cough on exertion.

    Off to the beach on Friday, where we plan to spend Christmas and the New Year – we can’t wait to have a good and proper rest.


    Cheers

    Guss


    see also:
    Guss Wilkinson: on Clinical trial
    Guss psoriasis
    Guss Sarcoidosis Update 

    Guss doing well
    Guss Insomnia
    Guss exercise questions
    Guss  My MP experience
    ___________________
    Guss: Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. (Started MP: Oct 2003 - D25...31ng/ml, 1-25D...76 pg/ml), Phase III since July 2004; Benicar Q8H, BP 100/60. Feeling pretty good!

    Aussie Barb
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     Posted: Tue Oct 3rd, 2006 23:23
    John D Sarcoidosis: wrote: Way to go Guss! Great to read about your progress.  I'm just a few months behind you,  and can relate similar observations. 

    Member in Phase 3.

    In recent weeks,  I've been feeling improved endurance and muscle strength in my legs and elsewhere.  My gage is how I feel after 18 holes walking the golf course. 

    Today,  I was comfortable doing chores all afternoon, after spending the morning on the golf course.  No need for my after lunch nap anymore!  I can get by with less sleep,  and do not have much dizziness anymore,  but the temps are cooling as we get into fall now, and that makes things a lot easier for me.  At times, I even find myself sprinting if I need to make a quick pit stop on the golf course.  It has been a long time for that to feel comfortable.  I am thinking I need to start some regular aerobic exercise,  like jogging or biking, so I am ready for the ski season coming up soon. Things are looking up here too!

    Cheers!  John Dresser
    see also:
    JohnD: condition and stamina improved 
    ____________________
    John D: Sarc- Lungs dx (biopsy) 1985, pred 3yrs, Started MP 2/04 1,25D=58.1 , 25D=18.1 -phase 2-6/06 phase 3- 9/04, 4/05--D1,25=13 25-D=6, 6/06 starting final phase3 abx combo- and D1,25=31 25-D=11

    Aussie Barb
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     Posted: Sun Oct 8th, 2006 01:37
    CelticLadee: CF + Headaches, Pericarditis, FM: noting improvements in social situation.


    Member in Phase 3

    My Sis is visiting for a few days. Lots of visiting & laughing, playing card games, went out together in midday sun. I had K cream on and used my NoIRs so was fine. I've said it before but it is still remarkable how well I do under these circumstances now that the chronic fatigue is almost totally gone. A strong contrast to a year or two ago. Life is getting better. Should would be great if the light intolerance would just go away too! :X

    Spent the next day & evening with Sis visiting, baking, doing jigsaw puzzle, playing Yahtzee, making beaded bracelets and cooking meals. Noticed at the end of the day my mental alertness was faltering as I know I had overdone the mental exercises required to keep up with her. Although I have vastly improved I am not 100% yet. Probably somewhere between 80-90% however so is most excellent! This was a wonderful test. She was so happy to see how much better I am now. The last time she was able to visit me was over a year ago and I was ready to lay down with fatigue and brain fog after a couple hours of visiting. Now I do not need to lay down at all. :D
    see also
    CelticLadee: CF I have great hopes!
    CelticLadee: CFS (chronic headaches, ear pressure, teeth pain and brain fog gone) 
    _______________
    CelticLadee: 2001 Shingles/ CF+Headaches. 7/2002=Dx: Pericarditis. 9/2002=Dx: FM. | 8/03/04 BeniQ6H|  8/17/04 Full MP|  01/21/05 PH2| 7/17/06 PH3| magnesium oxide | 25D/1,25D: 7/15/04 (27.9/63.9) 1/13/05 (14/43) 1/23/06(11/21) 5/24/06(6/32) 9/25/06 (8/66)

    Aussie Barb
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     Posted: Sun Oct 8th, 2006 01:48
    Vicki SA: ME/CFS, Splenectomy: better recovery time after trip away this time.

    Member in Phase 2

    I have been home on leave this week and recovering after our trip away over the long weekend. 

    I don’t seem to have been so miserable through the recovery process as I was after the previous trip. I am not sure what the difference was? I haven’t grieved this time. I think there is always difficulty after you go out and pretend you are normal and able to do holiday/social things and then come home and back to the grind of recovery and the reality of your life.

    This last trip I had more sun exposure. I wore the K cream and Megan Gale Invisible Zinc and was well covered with dark clothing and hat and NoIRs. I feel I coped quite well and am unsure if I had any extra symptoms because of the sun exposure.

    Oh well at least I have been out and about before the hotter weather comes and it will be more difficult for me (assuming that I still don’t cope with the heat). I feel really encouraged that I am able to recover from extra exertion much quicker now! I still seem to need 14 hours/day horizontal time but am able to be more ‘active’ when I am up, not that much of what I do would qualify as anything but a sedentary lifestyle :)!

    Onward and upward :D! cheerio Vicki

    May 2008:
    I am finding now after nearly 2½ years on the MP that I have so much more endurance and I recover from any activity so much quicker. The MP isn't a quick fix but it gets to the heart of the problem.

    see also
    Vicki SA (ME/CFS)  Phase One Alumni summary
    ___________________
    Vicki SA: ME/CFS 2000, Splenectomy 1980, MP Ph2 13/4/06, Mino100mg qod 16/3/06, Benicar 40mg q8hrs 27/12/05, NoIR/sunlight Oct05, D tests Mar 06: 1,25D=24.23, 25D=12, Sept 05: 1,25D=46.9pg/ml & 25D=16.48ng/ml, Ratio 3, Meds: Zoton, Endep, pain meds.

    Aussie Barb
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     Posted: Sun Oct 8th, 2006 13:16
    Toni D: Sarcoidosis: wrote: re MCS symptoms/allergies: On this family visit my daughter has pointed out some improvements she's noticed within me.  I'll call it a Good Report. 

    She said I seem to have a little more energy and that I'm walking faster. 

    She purchased the newspaper while we were out and I picked it up and was reading it.  She was shocked and asked if not the ink and smell from the paper bothered me anymore.  It didn't at that time anyway.  Wow.  Is the end of MCS symptoms/allergies in the horizon for me?  I believe so ...thank God.  I'm truly liking the small pieces of the puzzle too!!!

    Hope all is well with everyone.  Feel good and be blessed ...

    Oct, 2006:
    I have noticed I no longer have the symptom of floaters or vision spots within my eyes.

     I seem to be able to coordinate and organize paperwork and get things in order without much effort now.   
    __________________
    Toni D: sarcoid-1970 glaucoma high BP asthma allergies| Meds-Lasix Xopenex Nevanac Cardizem Probiotic| NoIRs No D/sun | 08/04 1,25D=38 25D=26| 07/06 1,25D=71 25D=9| BeniQ6H 09/27/05| Lasix 20 mg M-W-F| ModPh2 07/26
    Since '85, on prednisone. Prednisone-free since March 27, 2006

    Aussie Barb
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     Posted: Wed Oct 11th, 2006 03:13
    Hopeful Jill: CFS / ChronicLyme: restless legs are getting better... one of my first big signs that my body is healing!!!!!! Looking better! and more ...


    Member in Phase 3

    I wrote a few posts ago that my restless legs are getting better. It's been several weeks since they have kept me awake. I've had them a couple of times in the last week, but I was able to fall right asleep. This is one of my first big signs that my body is healing!!!!!!

    When I went to school last week to see my son's speech, a couple of people remarked that I look better than the last time they saw me!

    :cool: Good things are ahead of us!!!!!

    October 25th, 2006:
    : less
    ovary pain,
    Gerd,
    arrhythmia.

    : along with
    thicker hair
    and better sleep overall.

    Hopeful

    January 2007:
    I noticed while reviewing my journal that I haven't had the severe apnea that I used to have awaken me with a need to gasp for air. This symptom has been gone since October 20th. Yahooooooooooooooo!

    Jill
    _____________________
    Jill: CFS/ChronicLyme, Babesia, headaches, fatique, aching, chest pains, arrhythmia, sob, paresthesia, GERD, dizziness, depression,years of amox.for tonsils, 12/04 25D=23,1,25D=77, 8/05 25d=21.6,10/05 25d= 8, probiotics, magnesium, phase I 2/05, phase II 3/06, Phase 3.

    Aussie Barb
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     Posted: Wed Oct 11th, 2006 03:22
    RevDennis:  Sarcoidosis: My Dr said if I didn't do something I would not be alive in a year. My wife says I am leaps and bounds ahead of where I was in January when I started. (see first post)

    Member in Phase 2

    I will retire early tonight because I am listening to a series of books by Clive Cussler. The "Dirk Pitt" books. If you are familiar with these adventure novels, I feel like "Dirk" sometimes. Not brave or handsome or adventurous, just beat up.:D

    My wife and I were talking last night about my progress. Although, I sometimes don't see me getting better, she says I am leaps and bounds ahead of where I was in January when I started.

    I also remember my doctor telling me that if I didn't do something I would not be alive in a year. Here I am still kicking and planning for the future.

    My wife was very skeptical of the protocol when I started, she is not any more, she is a big supporter. Thanks to all who go ahead of me for your faithfulness through the hard times and to Dr Marshall and all who work with him to make this forum possible.

    Have a great night.

    RevDennis
    ____________________
    RevDennis: 01 lung biopsy/ lung, lymphnode, muscle & joint sarcoid; O2 24/7 @2 lpm, avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2

    Aussie Barb
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     Posted: Wed Oct 11th, 2006 15:52
    Lowelle Messner:  I would not be doing this without the MP.



    Thank you.  -Lowelle
    see also
    Lowelle Messner re horse riding
    _________________
    Lowelle: Lymph node biopsy '03. Liver, spleen, lungs, neuro & lymph. '03- Vit. D=13; 1,25 D=64. Recent numbers: Vit. D-12; 1,25D=30. Benicar; Phase3

    Aussie Barb
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     Posted: Sun Oct 15th, 2006 19:39
    TrishOBrien TH1 w/symptoms CFS & lupus: Overall, I am so much improved. 

    New Member in Phase 2

    Hi,
    I had some time to think about my progress on Phase I.  
    -I haven't had canker sores, swollen lymph nodes or sore throat in so long, I can't remember. 
    -Most of this week, I was able to go up and down stairs with almost no pain in my knees and hips. 
    -Brain fog is so much better.  Still getting periodic headaches, but they are responding to ibuprofen fairly easily.  
    -I am able to manage my kids with patience. 
    -I have only a little bit of pain here and there in hands and arms and periferal neuropathy hasn't happened in months. 
    -I've been able to stop taking inderal for blood pressure
    -and I think that change has helped my mood significantly. 

    November, 2006

    -my hair is growing back so much that I have to have it colored more often.  That's a price I don't feel bad about paying.  :)

    ____________________
    Trish OBrien: dx TH1 w/symptoms CFS & lupus. Joint pain, migraine, rest-legs, fatigue., chills w/o fever, canker sores, swollen glands in neck, jaw and underarms, thinning hair, numbness hands, feet and face. 5/06-vit d,125=67, d25=11; Oct06 d25=6| Phase 2 Oct06

    Aussie Barb
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     Posted: Sun Oct 15th, 2006 20:21
    robyno: Mum of Matt 14 yrs 40 kg: Rickettsia + Lyme symptoms: 1 year, 33 days since begin Benicar:   Holiday at the beach. Back to School.

    Phase 2 commenced 13 Jul 06
    see also 
    Matts Record of Improvements in the first year.

    We had a wonderful 9-day holiday at our beach-house.  Matt handled the car trip really well - we stopped 3 times each way but not for as long as I remember having to a year ago.  We went out for dinner twice (Matt just loves the wood-fired pizzas at our favourite Tarthra restaurant) and Matt giggled his way through most of our outings.  As a family it is wonderful to have our trips down the coast re-instated.  It is very relaxing for all of us.

    The wet suit, gloves, booties and hat worked a treat and Matt went swimming twice once his herx days had finished.  they didn't stay in the water for very long.  The invisible zinc cream seemed to work very well as per usual and didn't wash off easily in the water (Matt had to really work at it in the shower afterwards to get it off).

    It is interesting that Matt can go outside now at dusk, about 10 min before it gets really dark.  He doesn't even wear his glasses then - he just looks all around and comments how beautiful the world is.  I really think this illness has changed him forever - there's no way he'll take anything for granted again!

    Next week he has two days of school and two days of tutoring all lined up.  It will be a big week.  He is still doing lots of exercise, even on his herx days. 

    Oct 22nd, 2006
    At school on Friday afternoon he actually joined a couple of his classes rather than spend all his time in Special Ed.   I don't think Matt could believe that he was actually sitting in a class room!

    As if that wasn't enough, yesterday he went to see a movie with his friend for the first time in about two years!  - we can now add movies to the list of things Matt now has back.

    Oct 29th, 2006
    Matt is able to watch TV now and play the playstation so his list of things to do when he is tired has increased considerably. 
    He still loves his audio books but doesn't have to spend so much time in his room.  He'll also manage some exercise but doesn't push himself quite so hard.

    Matt loved his afternoon at school on Friday and will go again Monday afternoon. 

    His background headache (his BIG symptom) is almost 50% better than it used to be. Symptoms improving steadily each cycle.

    November 5th 2006:

    Matt can do so many exercises: sit-ups and stretches - they don't seem to jolt his head and he can handle it.  He occasionally gets a bit dizzy if he over-does the exercises but he won't be talked out of them.  I guess we have to trust his instincts.

    A few weeks ago that we measured his height and he had grown 4 cm since the end of July.  His weight is still about 40 kg though, so it's like he is being stretched!  I think the exercises are his attempt to put on a bit of muscle....

    Last night was another first - we went for a walk around the block all together!  We took the shortest block but Matt managed really well and every block we walk is up hill on the way back.  Those exercises are paying off!  I'm sure we will be doing a lot of walks in the dark as the summer progresses.

    Matt is planning three afternoons at school this week and wants to take his lunch to eat with his mates.  It will be quite a big week. 
    He is determined to get to school as much as possible. 
    He is working pretty well on his assignments at home and is enjoying being able to do them, especially on the computer.
    He has started giving his brother advice on how to make his powerpoint presentations more interesting - eg wouldn't he like Matt to make his words go up in flames or wouldn't he like to fire a cannon in the top righthand corner?  He's beginning to sound more like the Mattie of old.......!

    November 19th, 2006:
    I think Trevor and Liz agreed that Matt doesn't look sick.  Gee, he used to, but not any more.  He is just going from strength to strength
    - he doesn't time his TV watching or computer any more - he just uses them when he wants to.  It is no longer an issue. 
    -He can now lie down flat for minutes at a time, which is another improvement we have only just noticed. 
    -And he is so darn cheerful. 
    -He still has to time his trips to school to fit in with his "immunopathology" (I hate that word!) and can only last a couple of classes, but that will improve quickly from here. 

    For the first time in his life he is not looking forward to the summer holidays - he would much rather be going to school!

    Dec 3rd, 2006
    - Dr measured Matt's height 155 cm, a couple of cm more than the doctor had measured him at the end of July. 

    Matt continues to improve with every antibiotic cycle. 
    He is very busy these days 
    He has a couple of assignments to hand in this week
    and a whole lot of Christmas bon-bons he has been planning to make

    School or no school, we are going to have a great summer this year, even if it just means going to the  movies or watching a movie at home as a family.  It's been quite some time since we have been able to do things like that.  And of course we can go to the beach now that Matt has his wet suit and invisible zinc cream.  So roll on the holidays!

    Regards, Robyn
    see also Matt Happy New Year 2007
    ____________________
    Mum of Matt 14 yrs 40 kg, Rickettsia+Lyme sympt,paracetamol,Lactobac, Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; 16Jun05:1,25D=22, 25D=27,12Sep05:1,25D=30,25D=21, 7Oct05:1,25D=27, 25D=24; 7Dec05:25D=12.4; 5Apr06:25D=10; 18Aug06:25D=8.8 Ph1: 8Oct05; Phase 2. Phase 3 20Nov06:

    Aussie Barb
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     Posted: Mon Oct 16th, 2006 21:57
    Grant wrote:  Sarcoid: summary of Symptoms: Current Conditions and Improvements:

    Member in Phase 3

    Sleep distruptions --- Hugely improved throughout MP
    I now fall asleep easily and experience resorative sleep.
    Even better now on phase 3.

    Nasal blockage --- nasal breathing was about 20% flow before MP;
    Improved immediately with vitD avoidance; during phase 1
    Flow improved to 60-70% on phase 1; now improved to 90%!

    Headaches --- Pre MP was experiencing debilitating headaches several times/month. Headaches resolved immediately on Phase 1.
    Have not had any headaches for over 2 years!

    Brain Fog / Anxiety / Temper flareups --- I am 90% free of these conditions.

    Joint pains --- pre- MP I was sure I would be in line for knee replacement surgery within 5 years.
    Now with three levels and plenty of stairs - no problem!
    I do deep knee bends as required - no pain.

    Left shoulder -- completely 'frozen' by inflammation upon starting MP phase 2.
    Now gradually resolving - can now reach up to scratch my head again :-)

    Restless Legs -- pre MP used to get very uncomfortable in the evenings - 
    Now 90% resolved.

    Muscle achiness and 'malaise' - pre MP I was referring to myself as 'The 100 Year Old Man' -
    Now this is 95% resolved. At some point the continual 'noise' of achiness in my muscles just stopped. 
    This new-found calmness in joints and muscles has aided the quality of sleep tremendously.  Now, I can easily roll over and go back to sleep! I love this!

    Heart and Lungs -- I should also mention that a right bundle branch block (RBBB) originally led to a diagnosis of Sarcoid in the lungs (confirmed by biopsy). My RBBB proves to be stable since then (1986) and my lungs are fully recovered

    November 2006:
    - the good news is that with the MP I turned a gradual downward spiral into a slow steady climb towards good health.

    Patience, perseverence, and learning the medications, with Doc's help and monitoring, is what I consider to be the key to successfully using the MP. This takes a lot more effort than the kind of medicine we've grown used to (take these pills and be better in a week)

    Thanks, Grant
    _________________
    Grant: Sarcoid dx 1986 in lungs; coincidental RBBB; MP since 2003/4 w Valsarten and stops and starts| now Phase 3 w Benicar Q8H; 25D 27 nmol; 1,25D 70 pmol;

    Aussie Barb
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     Posted: Mon Oct 23rd, 2006 20:38
    hrts4me wrote: thank you Benicar!  I haven't had to take ONE nitroglycerine SL tabs since restarting the Benicar!


    Even with a good size dose of Verapamil daily and nitroglycerine, pre-MP, I was experiencing cardiac symptoms and events.  Once I started the Benicar---they stopped:)  I havent had to pop subling. nitroglycerine tabs---since starting!  (Prior to starting the Benicar, I was taking 3 nitro tabs during an event, and then sometimes that wasn't enough).

    -Still no nausea---thank you Benicar! 
    -Cervical spine still hurts but tolerable w/ benicar and pain meds.  
    -Feel good mood wise, sleep better.  
    -UTI gone. 
    -Cardiac symptoms---gone. 
    -IBS much better.
    -I am a happy camper.   Gawd, I love Benicar.

    see also Hrts4me: re cardiac symptoms.
    ____________________
    Hrts: LYME COPD Arterioscl FM/CFS Hypertens Steatosis HiChol 4.2cm Kidney Mass Bosniak Stones Hyper-CaPhUria Angina Neg.T-Waves Short-PR Interval SOB RadNeurop BiPolarI (1/05)25D-14 1,25D-13 Nitroglyc Albuterol 425mgVerapamil Xanax Lortab Phenagren Aspir Blood Thin. had MP break.

    Aussie Barb
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     Posted: Thu Oct 26th, 2006 00:44
    Rico wrote: improvements to Raynaud's problems, and legs, and I have noticed that I'm not waking up at night like I used to, to have to urinate.

    IMPROVEMENT TO REPORT:

    -For a few weeks now, I've been noticing that my Raynaud's-type problems have diminished to the point of having (almost) completely vanished!
    -I'm no longer as cold in the extremeties (fingers and toes) as I used to be!
    -I often bike to work. It's been in the 30's Farenheit in the last couple of weeks or so in the mornings when I bike in so I wear the same gloves I have in past years. When the temperature used to be in the 40's before and I had the same gloves on, my fingers would be ice-cold - so would my toes. Now, in the 30's, my fingers and toes are just fine with the same gloves and shoes.
    -I also find I don't need to wear slippers in the house anymore.
    -I went winter camping a couple of times with a friend over the last few years and my toes would always be ice-cold while he had no problem. Now I know why. Fascinating! Thanks to Dr Marshall, the MP, the staff on this site and the great doctor treating me!

    Another thing I have noticed is that I'm not waking up at night like I used to to have to urinate. For the last couple (or more) of years, lack of sleep has been a problem because of waking up in the middle of almost every night to have to urinate. And I'm drinking more liquids in the evening now, including coffee which I didn't before!

    My legs are still doing great since they got better back in early September! No longer the constant soreness I used to have. Went for a long bike ride and my legs didn't bother me at all. Just incredible.

    July 08:
    -My depression, anxiety and anger levels are better than pre-MP, that's for sure!
    -I've also been sleeping better over the last 2-3 months
    -I'm not waking up every night to have to urinate like I was doing for many months prior.
    -I also don't have the constant eye fatigue and brain fog that I was having.
    -I just feel generally more confident.

    I have to add that I'm really happy I started the MP as early as I did (i.e., before I got really ill). I've had it pretty easy compared to most other people on the MP. I've had no difficulties at all with light exposure - at least none that I'm aware of (perhaps my eye fatigue and brain fog were related but it was never bad enough - perhaps it was immunopathology as they have gotten better). Anyway, I definitely think everyone should start as soon as possible and not wait. I really feel sorry for people who are on their own, really ill and struggling through the MP and having to work. Things are looking up!

    September 08:
    My sciatica has vanished, thankfully.

    ___________________
    Rico: No diagnosis/some symptoms; wife with Sarc on MP; Olm 40mg q6h| avoid D| 1,25D=63 25D=32 (May 2006) 1,25D=44; 25D=10(Dec 2006)PhaseI(May06) PhaseII(Aug06) PhaseIII(Aug07)

    Aussie Barb
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     Posted: Sun Oct 29th, 2006 13:43
    ShrnHml CFS: In the last 10 days I have noticed that my knees operate like well-oiled machines.

    Member in Phase 2

    I previously thought my knees were just getting old. Now, it feels great to stoop down to pet the dog or get something from the bottom of a cabinet.

    December 2006:
    ....the last few years I have managed to send Christmas cards, but it was touch and go as to whether I could get them out in time. This year I mailed them with time to spare!

    I felt well enough to tackle some jobs.. There was energy left over to bathe and “do” my hair. 

    January 2007:
    The last few days have been super. I stopped all abx while waiting for a new scrip. I have started feeling good right away. I feel like a race horse coming out of the gate. 

    On Tuesday I did errands twice.......morning and afternoon……..with rests in between. 
    Wednesday was an at-home day spent mostly phoning to make appointments………….MP doc, optometrist, dog grooming, rug cleaning pick-up…………. and searching for a part for a ’93 car. This may not sound unusual until you know that previously I had hardly been able to make ONE phone call. It was just too much effort. Appointments have been dreaded for fear I could not keep them.  Now I have a secure feeling of being able to keep all the appts I made yesterday. 

    July 2007: A note from an independent observer…..

    On our trip west last month Phil and I stopped in St Louis and had lunch with Sharon.  I met Sharon at the LAX conference in 2006.  But I could tell that it was an effort for her to carry on a conversation, an indication of how much fatique she must have been experiencing.  Last month when we had lunch---what a difference!  She was animated and vibrant and seemed full of energy.  It was a wonderful thing to see. Carol

    see previous:
    ShrnHml / Sharon Vast Improvements
    ____________________
    Sharon: CFS/MCS/EBV/MVP/TMJ/PCOS 28 yrs. Neuro-cognitive deficit, endocrine imblance, muscle weakness. START DATES: 11/04 D-avoid & Noirs, 3/05 Benicar, 4/13 mino25mgQ0D. D-tests 10/05 25=44/125=62; 3/06 25=7/125=22. Other meds: Effexor 50mgQ24H.  ModPh2

    Aussie Barb
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     Posted: Fri Nov 3rd, 2006 03:54
    DrVikki : Lyme with co-infection. - making progress: going out in the world for dinners, brunches, lunches, a wedding and reception. energy to socialize.

    I have to say this vacation was an 8-9 out of 10, probably even felt a little better than my trip in September. I can tell that there's been a little progress even in the month in between.

    Travelled to Georgia. After 6 days in a cabin in northern Georgia, went to Atlanta for a wedding and to see other family members. Went out for dinners, brunches, lunches, a wedding and reception. I have to say I cried at the wedding and reception, because I couldn't believe that I was really out in the world and participating in family events again. Going through the worst of my symptoms in phase 1 and 2, this seemed like such a far off possibility. I feel like I kept looking around like a little kid in wonder and gratitude. I have to say the loud music at the reception did me in a little, but still enjoyed and even danced with my husband.

    This vacation showed me how far I've come since starting the MP - I had energy to be SO interested in other people and to laugh, to play games like Scrabble (I even trounced the other 3 players when last year the tiles looked like greek to me), to visit, to socialize. I did have a lot of moments of being tired, But this trip was also a VERY positive affirmation of how far I've come, and that my health will continue to get better.

    Thanks for letting me share my excitement.
    Take care,

    Vikki

    ADD: My husband says he has noticed a big improvement in my stamina. He says I'm doing more and being more calm about it. I can tell when I start doing things very obsessively or in a hyper state, that I am herxing. I am very excited about the possibility of losing the obsessiveness completely when I have completed the MP, and that it is not just me being a hyper person. I like the calmer feeling.

    see also
    DrVikki: great gall bladder test results
    DrVikki social / cognitive improvements
    DrVikki: thrilled with the MP
    ___________________
    Vikki: Lyme co-infec diag Oct04/ 16yrs back neck pain diges headaches fatigue tachycard tinnitis| Nov04 D1,25=65 D25=26 Sep05 1,25=18 D25=7 Dec05 D1,25=37, D25=8 Apr06 1,25=31 D25=7| light avoid NOIRS Jul05| PH2 11/7/05| Beni20mg Q6H/ PH3 6/8/06

    Aussie Barb
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     Posted: Sun Nov 5th, 2006 04:33
    Carole: PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story - Progress Continues!


    August 2006
    :

    The brownish "age" spots on my stomach seem to be fading. 
    The all-over inflammatory "feeling" is gone most of the time! 

    Physical and cognitive abilities are the best ever! 
    Muscle strength and endurance are normalizing! 
    The achievements and wellness gains on the MP are remarkable! 
    THANK YOU! :D  :D  :D  :D  :D  :D 

    September 2006:

    I took a "mountain climbing" vacation, am returning to a more "normal" state of life, and have significantly increased my involvement in philanthropic activities.

    Yes, we walked and hiked around 10,000 ft. daily.  With not exercising while on the MP, except for walking our dog, I fared very well.  Since I was not "physically fit" as in prior times, I was assuming I would be sore from the exertion.  To my surprise, I only had very minimal muscle soreness that went away quickly.  Even after a fall, I was hardly sore.  I believe the Benicar works in wondrous ways for almost anything! 

    I look forward to soon "being back" to the site and helping others in their journey to wellness. As one's health unfolds to a higher level, taking time to "smell the roses" is a sweet retreat!

    October 2006:

    Nuclear Cardiac Imaging in October (at rest and with exercise) revealed no abnormalities or defects. 

    I am elated to report that the impressions from the recent scan are all normal.  My recent, prolonged symptoms must have been immunopathologically-related, thus the cardiac inflammation appears to be resolving!

    This abx combo has again presented various responses multi-systemically;
    however, another positive marker to share is that I can now bend my little "trigger" finger with no problem.  My new issue is the middle finger on the same hand, but I feel it will follow the course and eventually resolve as well.

    Heartfelt appreciation is expressed to Trevor and to the Board for their dedication, support, and pursuits for all of us!  Trevor's recent AAEM presentation was excellent, and the clinicians' receptiveness was very encouraging.

    Best wishes to all! . . . Carole  :)

    see also:
    Carole:  DEXA scan definitely reveals that the MP is working toward suppressing my bone resorption! 
    Carole: MY MP Story
    Carole Living Proof of MP
    Carole: Edema resolved and Muscle strength and tone return.
    Carole: celebrating my most recent test and CT scan results
    Carole: History and Improvements...
    ____________________
    Carole: PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| ACE=68,43|

    Aussie Barb
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     Posted: Mon Nov 6th, 2006 07:03
    CFSgirl wrote: Some exciting changes have happened in the last month or two.
    Member in Phase 2

    - Dentist told me my gums are in excellent shape. before were in just good shape, and small pockets were being watched.
    -I was also told that my "teeth bones", I guess meaning the roots and jaw bone looked like that of a 19 year old girl. Yeah! Now if other things will start looking that good!:D

    -I went to get my hair cut today, has been 6-9 months since last one, and instead of the usual comments that my hair is very dry and unhealthy, and they always tell me to quit using a blow dryer (when I haven't used one in decades), and today, I was told I had very healthy hair.
    First time I was ever told that in my life.
    -It also  looks like I have more hair. It's still fine, but I have more of it, and I thought i had been losing hair since on the MP.:)

    CFSgirl
    see also:
    CFSGirl -fibro lumps gone
    CFSGirl: CFS/FMS/MCS Noting Improvements
    ____________________
    CFSgirl: 1989 CFS/FMS/MCS, Sudden, Dis. 1990. Esoph. Spasms Spine/ Back pain. Symps, too many to list 10/14/05 Ddiet/sun avoid. 10/20/05 D-25 19, D 1,25 49 10/24/05 NOIRs Start Benacar 11/05/05, Mino 11/18/05 Current Benacar 40 mg Q6h, Mino, Ph2 May06

    Aussie Barb
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     Posted: Wed Nov 8th, 2006 12:06
    Mirek wrote: I'm able to work full time, travel, eat anything I like and be outdoors..


    Member in Phase 3:
    Perth, Australia

    Hi Trevor,

    Would be great to meet you finally in Perth after 4 years on MP?

    Thanks to you my health is exceptional. I don't seem to be spending much time on the MP website these days, as I'm able to work full time, travel, eat anything I like and be outdoors (though forever conscious of the sun. Wearing a hat is part of daily routine). As for the Sarc, as far as I can tell free of it. No more herx felt.:)

    Cheers

    Mirek
    see also:
    Mirek: general well being (physical and emotional)
    ____________________
    Mirek: Sarc Oct01: 09/03 1,25D=55;25D=20/ 12/03 1,25D=60,25D=27/ 02/04 1,25D=50;25D=32/ 09/04 , 1,25D=55;25D=14, CRP1.8mg/L (0-8.0) 9/05, ACE:66U/L new range (8-52)9/05, 25D:20nmol/L 09/05. 1,25:37pmol/L Full Benicar. Feeling Great!

    Foundation Staff.
    .


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     Posted: Fri Nov 10th, 2006 02:37
    Improved PFTs

    I have new spirometry scores, which compare to my old scores as follows for 2001, 2003, 2004 and 2006.
    I started on the MP in 09/2002, so the first score was during diagnosis, and more than a year pre-MP.

    03/22/2001 ______ 8/26/2003 ______ 08/31/2004 _______11/06/2006

    FVC_2.99 liters________2.93 liters_________2.97 liters _____3.113 liters
    ___89% of predicted __85% of predicted__87% of predicted___92% of predicted

    FEV1_2.21 liters________2.2 liters_________2.39 liters__________2.56
      __80% of predicted__79% of predicted __86% of predicted __ 94% of predicted

    FVC/FEV1 _74%      _____82%       _________81%          _______103%

    Reports of energy level improvement with the MP
    Belinda memory and concentration problems and depression

    Aussie Barb
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     Posted: Fri Nov 10th, 2006 02:49
    Claudia wrote: I am so happy to know that I am succeeding in getting my D levels down whilst getting on with my life. 


    Member in Phase 3 

    WHAT I HAVE DONE WHILE de-toxing my body of the Dreaded D

    Since I started my MP journey this year, so far I have accomplished the following activities, all the while dressing like some sort of gothic/witch/bag-lady/freak and avoiding the D-filled foods:
    • completed a 6 month technical college course in Travel & Tourism
    • suffered through a southern hemisphere summer
    • travelled from Australia to California and Florida USA, spent 2 months there (it was SUMMER again!)
    • returned to Australia in time for spring... summer on the way again! argh!:X 3 summers in a row
    • sold house, packed up and moved out
    • travelled regularly - for business, shopping, school, to visit children in distant cities and next up...
    • travelling from Queensland to Tasmania for a working holiday (Tassie will be more bearable weather for me this summer)
    So, you see folks, it can all be done, if you are diligent in dress and diet and for me anyway, the K-cream / Zinc-cream seem to work well protecting my un-covered skin (hands and face) from incidental light. Perhaps I am not so sensitive as others, thank goodness, but I've proven to myself that I can continue my "life" while on the MP.

    More soon.  I'm going out to celebrate! :D:D:D Claudia

    March 2007:
    Looking back to see what's better since I began MP a year ago. My diet certainly is! :D My gums and sinuses seem to be completely healthy, as opposed to pre-MP.  My bladder problem only arises as a "herx"; I hardly ever notice it anymore. My eyes aren't irritated anymore except when I get too much light.

    more:
    I also have Hashimotos. I've been on the MP for a year and my thyroid antibodies numbers are falling steadily although I still need thyroxine.  I expect to get over it completely eventually... But what surprised me, little by little, as I have been on the MP is all the other assorted health problems I've had over the years which have improved or gone completely away.  These things were not even in my mind when I started out on the MP! 

    I had chronic sinus problems - "allergies" and constant infections - for years. But since the first few months on the MP my sinuses are completely fine.

    My gums, which used to bleed, are also completely healthy now. Chronic bowel problems, gone!  ... I have seen so much change in my body in a year.

    If I added up all the money I have spent on supplements in the past 25 years, it would easily pay for my whole MP treatment, I am sure, and I will be getting well in a much shorter time. 

    ____________________
    Claudia: Dx Hashimotos Autoimmune Thyroiditis; arthritis; eye irritation; history of CFS (1988-92); D-levels: 18Feb06 25D=44 1,25D=43.3; June06 25D=38; Nov06 25D=30.4; Daily Thyroxine 50mg; NoIRs| MP Phase 1 begun 23Mar_06 / Phase 2 begun July 10 2006 Phase 3 begun Nov 4 2006

    Aussie Barb
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     Posted: Sat Nov 11th, 2006 02:07
    RevDennis: Sarcoidosis: Note from my Dr visit. - improvements


    Mod Phase 2

    I went to my MP Dr today. It is a 6 hour round trip and I am beat. I started this morning at 6 am and took my 40mg of benicar and then every 2 hours took 20mg of benicar. I drove the whole trip.
    -I do not feel near as bad as I expected. Normally if I am in the car for 30 minutes I am just totaled. So it worked.

    Great news. Normally walking from the Dr's lobby to the exam room puts me to huffing and puffing. Still does but one change.

    The nurse takes my O2 sats when I get back there. Normally when she puts the reader on me It reads that my sats are in the mid to low 70's and only rises to the mid 89's while I sit there catching my breath. It has normally taken 20 minutes at 2 lpm of O2 with me sitting and not moving or talking for it to rise to 92%.

    -Today was different. The nurse put the monitor on me and it read 88 and within a couple of minutes it was at 93%. Hallelujah. That is a major improvement to me and I didn't really think that this combo was doing much to my lungs.

    -I have also lost 10 pounds and my blood pressure looks great. All good news.
    Have a great evening.

    see also:
    RevDennis: My Dr said if I didn't do something I would not be alive in a year. ______________________
    RevDennis: 01lung biopsy/ lung, lymphnode, muscle & joint sarcoid; O2 24/7 @2 lpm,avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2

    Aussie Barb
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     Posted: Thu Nov 16th, 2006 01:25
    edj2001: Gene: Sarcoidosis: more improvements


    Member in Phase 3
    Sep 2006
    -My dizzy spells are under control and almost gone.  
    -Overall, my mood and energy level are better and I am seeing glimpses of “good health”. 
    -My stomach is less bloated.  It is flat now when lying on my back instead of being extended.  Great news.   
    -Sleep is good and energy level better. 
    All in all, good things are happening.

    November, 2006:
    In 1998 I was running marathons and competing (age group) in biathlons (run-bike-run) until during my last race when I passed out on the bike.  Six months later the dx of sarc was made.  I spent several years on prednisone but my condition continued to get worse.  My hip joints hurt so bad I could barely walk. 

    I have been on the MP for almost a year now and have had many symptoms improve/resolve. 
    -My left hip is 100% and the right one is 90%.  I look forward to a complete cure in the near future.  
     

    Seems as long as I can remember I have had sinus congestion and post nasal drip.  Several years ago a Dr. said the back of my throat looked liked Niagara Falls.  This is not a symptom I expected to have improve with the MP. I thought it was allergies and had resigned myself to this condition for the rest of my life.  I took allergy shots as a teenager. The past few years I have been taking Clarinex as I have been avoiding antihistamines due to BPH.  

    -But, the congestion seemed to be slowly getting better and a couple months ago I stopped the Clarinex.  Since then, the condition has continued to improve to the point that I can now breathe through my nose with hardly any effort.     I first noticed this lying in bed on my back and realized something was different.  I was breathing through both nostrils of my nose with almost no effort.  There is still some sinus drainage but I believe it will eventually continue to improve and go away completely.  :cool: 

    -An interesting side effect is that I now have a sense of smell.  I can smell food cooking in the kitchen that I didn’t know existed.  I am sure this will help my appetite. 
     :)

    - I cut the abx in half the past two weeks to help me get through the thanksgiving holiday.  Good results.  I was more alert and didn’t need to sleep all the time so I could spend quality time with family.  I even helped my son install an attic storage ladder in his garage.  Very stiff and sore from all the lifting etc.  I will go back to full dosage and then cut back again for Christmas.   I got some sun light exposure but didn't seem to notice much effect.

    June 2007:
    I plan to start doing some load bearing exercise starting at a low intensity.  

    Thinking back there have been several significant milestones:
    Joint pain (hands and Hips) resolved, (before MP I couldn’t sit in a bucket seat because of hip pain so couldn’t drive my car)

    Shoulder tendons took over 4 months to heal, seems like they healed one at a time (my left frozen shoulder is now 90%)
    Clear sinus 75% of the time, when clear it is 100% (it is such a pleasure to be able to breath freely, never have been able to do that in my life)

    Best regards,  Gene 

    see also
    Gene: Everything is going the way MP said it would
    ____________________
    Gene: Sarc 98 A Fib uveitis skin cancer basal/melanoma benin colon tmr bph| proscar 5mg q24h digitex 0.125mg q24h armour 60mg q24h propafenone 150mg q8h|(p1/p2/p3)(12-05/2-06/5-06)|Benicar Q6H; D tests (1,25D/25D)11-05:50/41; 5-06:32/24; 7-06:-/11 avoid light-D

    Aussie Barb
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     Posted: Fri Nov 17th, 2006 18:11
    jcwat101: Joyce wrote: My Dad is 83 years old. He has Biopsy diagnosed sarc. glaucoma, atrial fibrillation/ pacemaker,  fibromyalgia, osteoarthritis,  prostate. He has been going very slowly on the Marshall Protocol for about a year. 



    Noting Improvements:
    re: Opthamologist visit:  
    My dad has open angle glaucoma. 
    -The pressure in his right eye, the only one with significantly elevated ocular pressure, had decreased.  So, perhaps the MP is helping it.  We will be following the numbers over time. 
    -The vision in his left eye seemed to also have improved some. 

    This follows on
    -improvement in his chest x-ray noted a couple months ago.  x-ray report of 9/30 says:  "Since 6/30/05, there is clearing of bibasilar density and increased pulmonary ventilation"  and under impression it says: "Clearing of bibasilar discoid atelectasis."

    -He also has significantly improved in his tendency to shortness of breath. 
    -He can now climb a flight of stairs and be barely winded, whereas before he had to stop and rest halfway.  
    -has had improvements in his energy level and some of his stiffness and pains.  For instance, he can touch his toes more easily now. 

    Joyce Waterhouse
    _____________________
    Joyce Dad: Biopsy diagnosed sarc. glaucoma, atrial fibrillation/ pacemaker,  fibromyalgia, osteoarthritis.  prostate cancer had radiation treatment about 12 years ago.  He is now on a drug treatment for it (Casodex).  His PSA has stayed low while on the MP. 6/05; 1,25D/25D  2/05: 30/22  3/05: 31/16  10/06: 16/8, Began MP: 9/06  Began mod. Ph. 2: 2/06  Phase 2: 7/06

    Aussie Barb
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     Posted: Fri Nov 17th, 2006 19:02
    jcwat101: Joyce: CFS/FM/Lyme for 18 years: reporting some of the neurological improvements I have noted.



    I find that now I sleep better and feel refreshed when I wake up much more often now, and have less need for sleep medication.  I no longer find my sleep disturbed very much by mild activity in the evening.  This used to be a big problem in that if I ever did anything in the evening besides complete rest, I would have poor sleep that night and feel a lot worse the next day.  And even when I don't sleep as well, it affects how I feel the next day much less than it used to.

    And it used to be that after a nap, I would feel really awful and spacey.  I felt so weird when I woke up that I almost never took naps so I could avoid that feeling.  Now, if I take a nap (which I need on days when my immune reaction is stronger), I feel better afterwards and don't have that awful weird/spacey feeling.

    I also have greater stability in my moods.  I had a lot of immune reactions in modified Phase Two that produced depression and/or anxiety and so clearly I have come along way in killing the bacteria that cause those symptoms.  I also think that on average, my cognitive abilities are improving.

    Other symptoms are also improving, which I mainly notice when I take a break from antibiotics for a week or more.  But, I know I still have a long way to go.  I have had to go very slowly, since I have been so ill for so long.

    Overall, so far, I am very happy with my progress on the Marshall Protocol.

    January 2007:
    Good news -- finally after 2 years on the MP, my food allergies are declining - though I still have quite a few.  I'll report more on it later in my PR, but I can say I finally was able to enjoy holiday foods this year after over 15 years of having to abstain !! :)

    But, I will say that knowing my reactive foods and minimizing my reactions was very important to my being able to do the MP, especially in the first year.  I still had reactions, but I knew what they were and often knew when they would be and could keep the antibiotics lower at those times to keep symptoms tolerable.

    Joyce
    _____________________
    Joyce: 18 yrs with CFS/FM/Lyme/IBS and many food sensitivities; 8/24/04 1,25D:64, 25D:11; 1/10/05 1,25D:22, 25D:6, crushed Benicar q8h; Began modif. Phase II: 2/23/05, 9/05: 1,25D:12

    Aussie Barb
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     Posted: Mon Nov 20th, 2006 23:20
    Sydney Chris wrote: I officially no longer have CFS... after just over 20 years of CFS (in extreme to relatively mild forms) and just over 20 months of MP

    Member in Phase 3

    Got the official diagnosis from my Doc late last week...

    Now I am pretty sure that any expletives I put in here to express my elation will be edited out, suffice to say (in my best Aussie twang), it's a pretty good result, with hopefully more improvement to come..:).

    Thanks Trevor (and Liz for your enduring support of Trevor and his work), Meg, The Board, Barb and my fellow MP'ers for your input, advice and support. It's difficult to actually say enough to express the gratitude I have for all of your efforts.

    Best to all..:)

    Chris

    Sept 2nd 07:
    Saw the Dr this morning.. confirmed my bone density reading was 5% above the population norm for my age after 2.5 years on a low Vit D diet !!

    He was a bit surprised and delighted that the regime of small, regular doses of calcium rich foods each day has avoided any issues in this area.

    That said he has had no bone density issues with his other long term MP'er to this point.
    Best to all.

    Chris

    July08:
    My PSA was through the roof during the first 18 months on the MP (3 - 4 times the safe level). I had a biopsy and a colonoscopy, all were good.

    As the inflamation in my glands settled so did the PSA. It has fallen well within the safe zone and remained there for nearly 2 years.

    September 2008:
    General health is great, not much aerobic capacity, but strenght is very good. I do remain light sensitive with today's lovely spring sunshine bringing on a decent headache.
    A way-point, in a life that is now unrecognisable from the previous 20 years, without doubt.
    An end point for this part of the journey.. well I guess its still one step at a time... :)

    see also:
    SydneyChris: Review of the first 15 months
    ____________________
    Chris: MP Mar 05. IgG deficiency, bacterial infection. VitD ratio 2.8:1 (177/63), Votum Q6h, NoIR's, sunlight, diet. Ph 2 Nov05. Mod PhII Jan 06. Feb 06: 25OH 6.8ng/ml, 1.25D 18.8pg/ml. Ph 3 July 06. Sept 06: 25OH - <7.2ng/ml (not measurable)

    Aussie Barb
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     Posted: Tue Nov 21st, 2006 19:25
    Freddie Ash wrote:  today I went to the eye doctor and received a great report after 18 months on MP.

     Member in Phase 2 on hold looking for a Dr to prescribe MP meds.

    HI ALL

    This is Fred in WV.  Just checking in to let every one know what is going on with me.  I may be on hold of the Marshall Protocol, but today I went to the eye doctor and received a great report.  I was on the Marshall Protocol for 18 months but I am still reaping the benifits of it.

    My eye doctor found:
    1) NO inflammation

    2) NO granulomas

    3) NO macular degenerate

    4) The cataract in right eye was NO worse that last year.

    5) Eye pressure was 7 and 8 in the eyes.  That is even better than some that I have had, some have been 11, 12, 13 at time.

    My eye doctor was well pleased with how the Marshall Protocol had helped my eyes.

    This just adds to my need to get back to the Marshall Protocol as soon as possible.

    Remember, we are all in this together and I am pulling for us.

    Your friend in sarcoidosis

    Freddie

    I want to tell  you the Cleveland Clinic called today to check my pacemaker and I still do not have any atril fib.  It is well over a year now and no atril fib.

    February 2007:
    new good things:
    I can smell things much better, ringing in ears better, no longer need meds for in between toes( I have used meds there since the late 1980s which my doc at that time blamed on my immune system not work correctly).  Also, I have had a dark place on my left arm that has had a different feeling when shower water hit it and some pain but the last 2 nights while showering I did not have any pain when the water hit it. More unusual symptoms leaving with the Marshall Protocol on the seen of the crime of TH1 diseases. I am moving on up with the cure from the Marshall Protocol as the crime fighter.

    see also:
    Freddie Ash pulmonary response to the MP.
    ______________________
    Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide,1/8/04 vitD-7, 1,25D-43; 5/30/03,D-11.7, 1,25D-32

    Aussie Barb
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     Posted: Tue Nov 21st, 2006 20:13
    Ames: CFS/FMS: wrote re spontaneity and better endurance - yay!

    Member in Phase 3

    I am noticing that I am able to be a bit spontaneous again (a personality trait I sorely miss). I’m used to having to plan events days in advance so that I can rest adequately and medicate myself in prep for more activity. However lately I’ve had friends call me right when I wake up and ask If I’d like to go to breakfast etc..and I find myself saying “sure!” without hesitation. This never happened in the past.

    I’m also finding that I can do things on consecutive days. In the past if I would always need at least a day to recover from extra activity . Now I find that I can go out for several days in a row…yay!

    see also:
    Ames: Listing improvements: I am thrilled
    AMES re MP: A CFS patient's experience with the Marshall Protocol
    Ames: positive advances
    _________________
    Ames: CFS/FMS/osteopenia/severe insomnia Age 24. 03/05: 1,25D-not accurate 25D-40 07/05 1,25D-60 25D-40. Phase 2: 06/05/05 25D:11/05-29,12/05-49,1/06-37, 1,25D-47 06/06 25D-20 Klonepin, Gabitril,Trazodone,Melatonin(all for sleep)Tramadol for pain

    Aussie Barb
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     Posted: Thu Nov 23rd, 2006 17:52
    DThomas: Sarcoidosis: Someone told me recently that the "Sparkle" was back.

    Thanks for the links on SAD and depression.  What a wonderful benefit of the MP and a confirmation that something good is going on inside me! I have, over the past 7-8 years been treated for SAD, Seasonal Affective Disorder during the winter months. Now I don't feel depressed at all like I have in years past.  I don't feel the "weight" of depression.  In fact, I feel very positive about life in general. 

    Someone told me recently that the "Sparkle" was back.  It's amazing how you look when you feel happy about life and the future possibilities.

    December 06:
    My biggest improvement so far has been depression.  For years I had SAD, Seasonal Affective Disorder, and took antidepressant meds each winter.  This year, I have no signs or symptoms of SAD.

    April 07:
    Good news, I made it through the entire winter with no depression! Even with he IP's this was one of the best winters in many years. 

    DThomas Debra: Day 54 MP: greatly encouraged by my progress.
    __________________
    Debra: DX Sarcoidosis, 1991, Lungs, skin, throat, sinus, 10/9/06 D25=21; 1D25=41, avoiding light & D;wearing NOIRs; Synthoroid .5mcg, zyrtec, off prednisone 10/20/06, began benicar 40mg q6h 10/22/06, Started Mino 25mgQ48h on 11/4/06, Phase II 1/10/07

    Aussie Barb
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     Posted: Sun Nov 26th, 2006 01:48
    Tom: CFS-18years: I am in a different place, a better place, another level.

    Member in Phase 2

    Well, where do I begin? It’s been an incredible month. All of my strange symptoms lifted and left me with greater strength and focus then I have experienced in years.  I know that I have a long way to go but I could feel the change. I am in a different place, a better place, another level.

    I spent thanksgiving with family and held my own in conversation. I even was inspired enough to visit friends who lived locally. I could never have thought of this even 2 months earlier. This might be one slow train out of the station but it never stops moving. 

    I hope all of you had a much better Thanksgiving.


    The very best to all. 

    Tom :)
    see also Tom: I have been pleasantly surprised at my cognitive improvement.

    ______________
    Tom: CFS-18years,D tests Sept 08:1,25D=50pgml & 25D=32ngml/Dec22: 1,25D=34pgml & 25D=22pgml/Jan 1,06 Light, D, Noirs /Jan 9,06 MP-beni 40mg q6h/Feb 25,06 Mino 100mg QOD.Phase 2-March 17,06

    Aussie Barb
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     Posted: Tue Nov 28th, 2006 03:22
    DianeC wrote: Back in 1998 testing revealed that I was a lupus suspect. My only regret is that I did not start MP sooner!! 


    Member in Phase 3

    Glad to see that you found this site!  Back in 1998 testing revealed that I was a lupus suspect.  Conventional medicine had me on immunosuppressant drugs and after 3 years I was so much worse off because those drugs only suppress the illness and allow it to flourish.  

    Then for the next 3 years I had been prescribed doxycycline. It was evident at that point that I had a bacterial infection because the doxy was somewhat effective.  But after 3 years on doxy, my brain felt like mush, I could not think straight because of the severe brain fog.  I developed osteoporosis and osteoarthritis and I had trouble walking because of severe leg pain which caused me to limp.  The orthopedic surgeon told me that in 2007 I would need a hip replacement! 

    Then in 2004 someone convinced me to try supplements but that failed because I was ingesting so much Vitamin D and folic acid which was feeding the inflammation! 

    I had heard about the Marshall Protocol but wish in retrospect that I had acted sooner and started the protocol earlier because it is truly giving me optimal health and giving me my life back for the first time ever!  I have had absolutely no problem with minocycline.

    I am now in Phase 3 and doing great!  It is the first treatment program where I have more control as to when I will feel good or bad and I can adjust my meds accordingly!
    - I am now practically running up and down the stairs now with no pain, no limping etc and I will not be needing that hip replacement next year!

    So to summarize.........your lupus diagnosis is probably not lupus at all (it is just a label) most probably it is the cell wall deficient bacteria.  When you do take minocycline, you will probably develop immune response symptoms and that is great because that means that it is targeting the problem.  That means that you will feel worse before you get better but you can control the symptoms to the point of being tolerable.  I do hope that you will decide to start MP  My only regret is that I did not start sooner!! 

    Best wishes to you!! :dude::D:cool::)

    DianeC
    ____________________
    DianeC: dx chronic fatigue/ lupus osteoporosis osteoarthritis, hip replacement dx for 2007 9/05 tests: 25-D 40 1,25-D 52 1/10/06 Benicar 40mg Q6H Mino 28Jan @25mg q48h Mino 12Mar @50mg q72h Mino 15April @75mg q72h Mino 1May 100mg 5/06 D-25 18 10/06 Phase3

    Aussie Barb
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     Posted: Tue Nov 28th, 2006 03:38
    ralph Sarcoidosis: wrote: My family have noticed the extra spring in my feet.


    Member in Phase 2

    Hi All,


    In Phase 2: Getting out of bed of a morning appears much better. I don't feel like I have been hit by a bus when I wake up. I seem to have more energy at times in particular at night. It just so happens I have experimented going out a little more recently as I started Phase 2.

    I must say whilst I'm no way near being in the cured comfort zone, I do feel since starting PH II that I definitely got more energy. 

    My family have noticed the extra spring in my feet and have pressured me a few times to go out more than I had planned. To date I have resisted and stood my ground. They understand but they don't. You know what I mean. They think because Im more mobile that its all over and everything can get back to normal. Not quite guys..... After 8 months of hard work not going to throw it down the gurgler.

    With going out using the Quadblock Sensitive I am finding it quite good that not getting much symptoms. I am taking the Benicar  20mg/q2h as well. I do suffer at night after exposure on that day additional tiredness. I can live with that. I will continue to be vigilant in monitoring My Vit D to ensure its at a level where my immune system will be actively killing those bugs.

    regards,

    Ralph
    ___________________
    Ralph: Lungsarc 1/3/05 fatigue, bod/ache, irr/heartbt/ taking no meds| Avoid D, Light/sun, Noirs,24-7-06 25D=8/ 1,25D=39,4-9-06 25D=14, BeniCom 2/4/06 q6h, Start Ph 2 22-6-06 Minimal light sensitivity |indoors. 3/10/06 VitD-6.8,1,25-31.5 progressing well.

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     Posted: Fri Dec 1st, 2006 19:00
    Debbie D. Just wanted everyone to know that my energy is returning and feel much more "normal" since I began Marshall Protocol.... Doing well, Debbie:cool:


    Member in Phase 3
    ___________________
    Debbie D.: Pulmonary Sarcoidosis, Menniers, Thyroid, UTI, Sinus, Cough, Depression Anxiety, herniated disks; 9/26/04 Noir/125D=27 25D=19 Phase 1, (1/05) and Phase 2/3 (3/06)

    Aussie Barb
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     Posted: Sat Dec 2nd, 2006 00:24
    Carolyn FMS/CFS: wrote:  I am feeling somewhat better lately. 


    Member in Phase 2

    The thing that I notice the most is that in the mornings when I awaken I don't feel bad.  All of my life I have felt so bad when I first wake up.  I had to drink at least 2 cups of coffee to be able to get ready for work.  I would finally begin feeling better at noon or even later. 

    The last couple of weeks when I wake up I have felt more human.  I haven't had to struggle and coax myself out of bed. 

    Many thanks, Carolyn
    __________________
    Carolyn: Depression, 1966; Dx2000 FMS/CFS, Psoriasis, Tinnitus, Muscle Joint Pain; tailbone pain; poss Sarcoidosis; RLS; PLMD; MP 8/04;1,25D 59/25D 37;2Abx 1/27/05; 11/05 1,25D 37; 25D 13; 5/06 1,25D 34/25D 6; 3abx 6/06; back to 2abx 7/06/2006;10/06 1,25D 44;25D 7; dysfunctional sacrum

    Aussie Barb
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     Posted: Sat Dec 2nd, 2006 01:38
    VEZ wrote: I have more of a sense of well being than I have had in a long time as well, like feeling grounded..

    Health Professional

    Feeling pretty good overall with tolerable symptoms.

    I do have more energy than I have had in a long time and I am grateful for this. 
    Even though I still have this cough and some wheezing, my lungs feel stronger than they have in a very long time.  I can take some very deep breaths without coughing which is great. 

    I am very grateful for this amazing treatment....though I know I have quite a long road ahead of me... as far as I am concerned this IS the right treatment for me....I can feel the difference already in five months.........thank you is not enough......I will make it.

    VEZ:cool:

    March 2007:
    PROGRESS::D

    I drove about 30 miles one way and did some shopping and had a nice lunch with a friend. It was overcast here but sunny when I arrived as it was south of where I live. I wore zinc oxide, my darkest Noirs while driving.  I did not have to wear glasses shopping or during lunch.  I did not have too much difficulty when I returned home but was tired and did rest for awhile in a dark room.  Thanks for all of your help...

    more March 2007:
    Yesterday was a great day...I could not believe how much energy I had and how good I felt and......it was VERY sunny here with temp around 70 degrees. We had a preview of summer and I did have some time outside, covered and slathered in ZO with NoIRS but outside!!! No problems or ill effects to report.

    I was able to go grocery shopping without using my NoIRS in the store, (used darkest outside), carry in all groceries, walk the property when sun went down a little, cook dinner, wash clothes, and tidy up the home and have a guest over for tea and I did feel quite well.:cool:  Very little coughing and very few aches and pains.  I still have the brain fog but hey, I am not complaining.

    June 2007:
    Prior to the MP whenever I worked physically, either outdoors or doing work indoors after a time my body would literally ache, though I would push myself through it my spine and all my bones would hurt so much I would take Motrin.  I have had some pretty long days lately, planting, and gardening etc and though tired, my body does not hurt.  I find this the most amazing thing as I have lived with aching for so long I began to think it was normal. 

    Overall I am doing well and grateful beyond words for the chance to get my life back and for all of the tireless efforts of this board, staff and the genius of Dr. Marshall. 

    I am approaching my one year mark on June 28th...Amazing!

    see also
    Vez update: I feel stronger than I have felt in years
    _________________
    VEZ: lung granulomas x 13 yrs neuro cardiac symptoms chronic cough joint pain TMJ tinnitis Factor V Leiden| armour|probiotic avoid light/D NoIR| 6/30 Benicar q8+prn 8/28 mino| 6/30 1,25D-58.3 25D-33.6 TSH 10.6

    Aussie Barb
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     Posted: Sat Dec 2nd, 2006 21:32
    UshiAad: Diagnosis ME 1993: things are getting better !! 

    Member in Phase 3

    I went on holiday for a month and I even did some sports (sort of) and it felt great, even have that good old feeling of feeling better after some exercise. Muscle vibration in the upper body is basically absent (only if I exagerate something they remind me) and legs a lot better. I can more or less move around freely, which is a great sensation, sometimes I even forget to plan before I move myself around !!

    Even if I will not improve any further, which I don’t think, the MP is already worth it as I am getting my life back. 

    I like the MP map Wrotek made, although I do feel a bit on my own in Ushuaia, Argentina South America ! Anybody out there !? I think it is also very usefull to convince ‘outsiders’ about the number of people everywhere who took the (right!) decision to start the MP. 

    Although it is still way to go I am getting more hair again !! After getting ill in 1993 within a year I lost most of it … 

    Planning my next antibiotics combinations ahead of time. Having written this down I do realise that planning so far ahead is a very good and positive sign that things are getting better !! 


    June 2007:
    The most interesting nowadays is starting to get some sport acitivty going. It feels for the first time in 15 years that I can do something on a sustainable level (if I don’t overdo it of course). 

    Even the winter time here in southern Argentina doesn’t seem to cause some relapse (typically winter would be the worst period of the year for me). I even could get over a cold which before was quite impossible so my good old immune system seems to relearn some things.

    Allthough sleep has been a problem in the past nowadays fine.


    January 2008
    My energy level is quite good, can even do some sports, to which body responds but more and more in a normal way (exercise still is ‘the’ yardstick to see where I am on my path to recovery), response to alcohol (glass of wine; which has been off-limits for a decade) is another good yardstick and although it is not an on demand test my ‘últimate’ test is to see whether my body can get over a cold (get a fever for the first time in 15 years, sneezing is already nearly normal)

    La Vita e Bella Life is Beautiful 
    La Vita e Bella UshiAad: Alumni Progress
    ______________________
    UshiAad: Diagnosis ME 1993, D free diet and low light since 20/7/5, pulsed mino from 24/8/5 till 19/9/5 and Benicar since 21/9/5; Benicar/Mino since 3/10/5; 25D 4/10/5 6; 1,25D 4/10/5 21, NoIR's since 6/11/5; Phase 2 since 25/12/5; Phase 3 since June 2006

    Aussie Barb
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     Posted: Sun Dec 3rd, 2006 19:45
    rc45guy Type1 Diabetes Jan89, insulin pump, 6.8 HbA1c. Sarc Mar03, CFS: improvements. 

    Member in Phase 2

    I have noticed decreasing amounts of insulin needed since being on the MP (my basal is 31U/day and I average about 60U-70U/day). After I take my mino, then about 30min later my BS falls.

    Anyway
    (1) I have lost about 15% o my body weight over the past 6mo (220 to 190),
    (b)my appetite is decreased,
    (c)I'm exercising quite a bit, and
    (d)I'm eating less carbs (about 50-75/day). Of course, all of these factors play a part in the decreased insulin usage. My basal rate has gone down from about 80U/day to 30U/day.

    I'm playing racquetball 2x/week, which I couldn't have dreamed about doing before the MP, lol.
    _________________
    rc45guy: Dx - Sarc Mar03, CFS, Type1 Diabetes Jan89, insulin pump, 6.8 Hb A1c ; No add'l meds; D tests May05:1,25D=55 & 25D<=5, avoiding light & D, NoIR 207s, Bolle100s, Phase 2

    Aussie Barb
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     Posted: Wed Dec 6th, 2006 21:38
    Ival: RA: This past month has been my most active month ever since starting the Marshall Protocol. I have been able to do something just about every day.

    Member in Phase 3

    The day after thanksgiving I went down to Daytona to the big Rod run car show. The whole infield is full of muscle cars and hot rods. I had to walk a good four or five miles during the two days we were there. It was not pain free but not enough pain to really complain about.

    Last week we had a big stock car race in Pensacola other than a little stiff back and neck from being out in the cold weather I did fine for the four days that I was at the track.


    I missed my gold of working on one of the cars this year which surprisingly got me depressed for a little while. After I sat there and put it all in perspective I started laughing because I sure don’t have anything to get depressed about.

    I’m probably going to miss my goal of going back to work by the end of this year but not by much.  I’m not going to be able to work with all the heavy equipment that I used to use for a while yet.  So I’m going to get an office job for a while doing paperwork and use my brain since it seems to be functioning most of the time.

    Since January will be one year since starting phase three my plan is to switch antibiotics and if all is manageable I will get serious about going back to work.

    I’m still having immunopathology effects but they’re not limiting my activities very much. My spine is having the most die off lately. Some days I walk around like I have Ankylosing Spondlitis. But other than walking like an old man it is really not limiting me very much.

    I believe my improvement of arthritis symptoms this past month has been a direct relationship to the improvement of my GI tract.  My G I track is not 100% yet but it is better than it has ever been in my life. I’ve had very little sun sensitivity this month even though I’ve had a lot of eye immunopathology .

    Thanks to everyone involved in this protocol Ival


    February 2007:

    I’m in the 27 cycle of the full phase three antibiotics.

    All of my immunopathalogy has become very manageable. My upper spine and muscles continue to improve but with a lot of immunopathalogy. Other than my back all of my arthritis pain is pretty much just a nuisance in the background. The last three months have just been unbelievable.

    I’ve had so much energy since the beginning of the year that I have finally been able to go back to work. I still feel the fatigue coming on but it is not bad at all. I wanted to make sure that I was going to be able to continue to work before I posted. I’ve been back working for seven weeks and I’ve been holding up remarkably well. I’ve got a nice little dark office where I play on a computer all day. I was hired to get a couple software programs talking to each other.

    When I started on the Marshal Protocol 21 months ago I already had stop working the year before.  I was just about bedridden with chronic fatigue, arthritis pain and muscles stiffness. I stayed in bed about 60% of the day I pretty much thought my life was over.

    This is definitely the E=MC2 of medicine. The beginning was not too much fun but the endings pretty amazing. There needs to be a new word in the English language to describe what it is like recovering from a Th1 disease. It’s a strange feeling describing what it’s like to regain your health.

    Thanks to everyone involved in this protocol Ival


    see also:
    Interview with Ival Meyer - arthritis, dyslexia
    Ival: MP is the right treatment for RA
    Ival: Here is my little speech I gave at the Los Angeles conference. see DVDs
    Ival: I've got my life back
    Ival: improvements..8 months ... 1 year....
    ___________________

    Ival: diag RA 2001 Male 47: MP 4/12/05/ Benicar Q6h Ph1 4/26/05/ 25D13ngml 125D 44pgml Ph2/6/1/05 Ph3/1/25/06

    Aussie Barb
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     Posted: Thu Dec 7th, 2006 21:06
    Jeanninehope: CFS, FM, Lyme, Morgellons: I feel my old self coming back and it has only been six months on phase 1.



    The last week or two I have been feeling a real difference...It kind of sneaks up on you... I feel less tired and am not irritable...I feel comfortable with myself and even have motivation to do things... which even on antidepressants this level of mental stability was never achieved...(I wish I had know about the MP ten years ago when my symptoms started as depression and panic attacks and sleeping a lot..but I am thankful it is here now...as I learned a lot about life being ill)... I can read and not have to re-read to comprehend. I feel my old self coming back and it has only been six months on phase 1.

    OH yeah my moodiness and brain fog has even lessened do I dare say it is going! WOW I can taste a "NORMAL" life returning....I know it is early and I still have a way to go but I am ready!!!

    I am still at home mostly but am able to get out whenever...I still sleep til noon but feel more refreshed when waking up...I had no idea I would be seeing results this soon!

    I am now thinking about all the things I have always wanted to do and am planning for the future! I am even finding myself wanting children when I have never wanted them due to not being able to even fathom taking care of them because I was so tired and sick I couldnt take care of myself ...well I could but it was a struggle and I needed lots of support...This disease has even affected romantic relationships to the point of not being able to do anything and enjoy it without focusing on the disease. However, I see this as a thing of the past...as I am recovering.

    I also saw the LAX panel discussion. I recommend the DVDs to everyone!  I really liked the family aggregation lecture on the Chicago DVDs! Makes the world of sense! 

    Thank you staff and Dr. Marshall!! Merry Christmas and a Happy New Year! I am getting my life back!!!

    We may endure for a night but JOY comes in the morning...

    Jeannine

    March 2007:
    I was also thinking the other day that when not herxing I can do MATH like never before in my brain!!! This is exciting.....I was never able to do this before no matter how hard I tried and it was embarrassing as well as fustrating...I also have noted awhile back that I can read faster easier and comprehend more...that is when brain is clearer... menses are regular now.

    The MP is amazing...No easy feat but very doable....

    more March 2007:
    OH MY!!! Since I am in Mod Phase Two I have been getting up at dawn the past week or so and I was able to be awake without sleepiness... I use to get so sleepy the Dr's thought I might have a sleeping disorder...I was fatigued but just being awake during the day without sleepiness was AMAZING!!!!!!!

    Well more good news......I am sleeping and feeling like jumping out of bed to do things..I have never felt like this in my life!!!!!!!!!!!:D:D:D:D:D.Today I was able to do five hours of running around in the city before getting fatigued and that was with standing...

    I would have never imagined....  My eyes are not sensitive that much and I am able to go out for long periods with K creme and covering, glasses etc...for shopping and driving....I was able to take my glasses off today in the BRIGHT store without any consequences...I even just now caught my self here on the computer typing without them...

    My six pm med alarm just went off I couldnt believe I have been up all day without crashing or just laying around...I have been active ALL DAY!!!!...This has been the best I have felt in my life!!!!!!!!!

    We may endure for a night but joy comes in the morning:dude:....

    Jeannine
    _____________________
    Jeannine:  30yr/old: CFS FM Lyme Morgellons| pain fatigue depression flulike joints pain| 2/06 1,25D-49 25D-11 9/06 25D-11 2/07 25D- | prozac20mgqd| MPstart 7/14/06 Beni40Q6 P1 8/06| Mod Ph2

    Aussie Barb
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     Posted: Sat Dec 9th, 2006 21:34
    Lori - Lyme
    neuro immunopathology and sensation returning:

    LINKS to Member progress and improving Health
    Resource of individual links to Members recovery experiences

    Aussie Barb
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     Posted: Tue Dec 12th, 2006 03:01
    prugg21: Pam: MCS/CFS/FM 22+yrs: making encouraging progress on the MP.



    Sleep: I love this new ability to sleep! I so want it to last forever. I finally woke up feeling not so badly today, much more energy, 90% and way less weakness in muscles.

    Sleeping adequate amounts recently and if I do wake up, it doesn't take long to fall back to sleep. YAY! I'm so happy with this development, I can't tell you. Was afraid to comment on it before, afraid I'd jinx it. Sometimes my energy is improved from it, sometimes not, brain power is somewhat better too. It just seems to improve the overall quality of life, I'm not so involved with on and off napping and grogginess and exhaustion that goes along with that (similar to having a new baby).

    Light: I'm finding I'm not as affected by fluorescent lighting as I was several months. ago. No longer feel excessively weak and terribly faint as I did then.
    I'm noticing my light sensitivity seems to be declining some. I'm having more trouble with seeing things inside with my 10% Noirs on.

    Migraines: I have not had one migraine since starting the protocol. Still having mild transient headaches, but these are declining lately too. I used to have a migraine at least 2-3 times per month, even with severe food restrictions and extreme chemical, pollen, mold, and dust avoidance.

    MCS: Good things I've noticed are that I tried reading a newspaper this week and didn't react to the ink (used to give me a headache if not a migraine). I also had 2 other 2nd hand exposures (meaning another family member had an exposure) which normally would've given me big problems and while I could notice it, they were not big deals.

    One of these exposures was to spray paint, my daughter came in contact with. She was rendered a total insomniac for a night from it, I had mild tightness in my throat. Normally this would've given me a lot of coughing, mucous production and fibromyalgia pains in muscles. The other exposure was particleboard at the mall. Before, this would cause me to miss most of a night's sleep and be sick with flu-like symptoms for 24 hrs. This time, a somewhat restless night's sleep. Period. Felt fine the next day.

    Ability: Feeling better emotionally today. Energy about 75%, getting some Xmas cards, etc done.

    I was able to attend a party and felt fine even though the host's home was not a "safe" one for me and of course there was lots of perfume in the air. In fact, there were brain teaser games and I actually WON one of them. Wow, imagine that, me with my mush for brains winning something that requires some functional thought processes in a group of healthy people with smells abounding that normally remove my ability to think well?
    What an esteem booster, not to mention encouraging as far as progress on the protocol.

    I did 3 hrs under fluorescents without getting to the fainting stage, that's a huge improvement for me.

    I went to see my chiropractor / reflexologist yesterday for the first time since before starting the MP. He said the only thing he could find wrong was the esoph. reflux and it wasn't nearly as bad as before. He couldn't find anything else out of whack. I was incredulous. He checked several different ways he has of checking and couldn't find anything amiss.  So, needless to say, I am amazed and stunned. It's hard not to be after years of being so messed up in most ways possible.

    My energy is remaining much higher than usual, around 85-95% which makes me really happy especially this time of year. I still do rest a major part of the time, I just have energy to do some of the things I want to do in between.

    December Holidays 06:
    My energy has still been up there, yesterday was SO good, I almost forgot to notice I am sick. It snowed and since it usually only does that every couple of yrs here, I went out and enjoyed it for a little bit, walking and taking pictures. All covered up with zinc lotion on face. I only needed 1 pair of outdoor Noirs on, but it was overcast, so I'll probably still need at least my indoor and outdoor together for our sunny southern AZ days. Just a month or so ago, I needed 2 pairs of outdoors on for daytime. My energy lasted really well most of the day, I finished a skirt I was making for my daughter and only got tired in my shoulders and back at the end of it.

    A quote I ran across recently:

    "Diseases are the crises of purification, of toxic elimination. Symptoms are the natural defenses of the body. We call them diseases, but in fact they are the cure of diseases." Hippocrates

    February 2007:
    ... able to get some things done around the house, actually able to do some cleaning, organizing and paperwork for 2 straight hrs before having to rest.

    I realized that I have not felt faint on standing at all this week or easily out of breath on trying to do anything physical. That feels like a major improvement. It's so nice to be able to just stand up without having to bend over!

    Pam

    see also Phase One Alumni Pam's Progress 
    ________________
    Pam: MCS/CFS/FM 22+yrs, Gerd, migraines, insomnia, avoiding light & D, NoIRS, benicar 3/30/06 20mg Q3H, mino 4/18/06, mod/ph2-10/17/06, probx, estriol, 3/06 1,25D=27pg/ml, 9/15/06-25D=26mg/ml 11/13/06 -25D=21mg/ml

    Aussie Barb
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     Posted: Tue Dec 12th, 2006 17:36
    jrfoutin: Janet wrote brain fog cleared and I won my life back.


    Member Advocate

    I have had very, very serious brain fog. Before the MP I was having trouble remembering much of my life and recent events (long and short term memory). It was very upsetting.

    When I would speak I would forget what I was saying, or even that I was talking. It got to be a trademark conversation frustration in our home culminating when my husband would just say "Finish it!" when I would start a sentence and then... nothing. It bothered both of us deeply. No matter how much I tried, I was bound and gagged with brain fog.

    My father, who suffers from Parkinsonian disorders, was doing about the same thing at about the same time, so I was alarmed. To me, this is one symptom resolution that would have been worth any agony and any difficulty of the MP to resolve.

    It used to take me the better part of a day to make one post. Now I do this and similar things quite quickly.

    Just as all healing on the MP, symptoms follow where the bacteria have invaded. My fog had to be cleaned up. The most challenging part of the MP for me to date was ModPh2 when both physical and mental malaise was profound. There were a couple of times when I felt locked in nothingness. Fortunately, and as per all immunopathology on the MP, brain fog cleared and I won my life back.

    So there you have it. I am an example. When did brain fog end? For me, it generally resolved somewhere around the end of ModPh2, very early in the MP. I was quite light sensitive to about the end of Ph2, about the same time that the last remnants of this particular symptom seemed to go away completely. (I still use NoIRs and keep lights low.)

    Your mileage may vary based on your bacteria complexity and load.

    January 2007:
    I sailed through staying up for New Year better than my husband. That is a lot. I used to fall asleep at 10.

    Choose well, get well--Janet

    see also JRFoutin Milestone Markers Sarc-Th1, Notes from Phase II and III
    ____________________
    Janet: Dec99:Sarc, Sep00:offPred, Mar05:no-D+lo-light+NoIRs, 8/09/05:125D=61|25D=12;P1, 10/6/05ModP2, 12/31/05P2, 6/28/06:125D=40|25D=under4, 7/11/06P3 10/19/06:125D=37|25D=under4

    Aussie Barb
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     Posted: Wed Dec 13th, 2006 23:23
    redsandraven: neurosarcoidosis:  I have noticed some things really getting better.
    Member in Phase 2

    Plugging right along . I herx, but not really bad. Just flu like symptoms. Mine are the worst on the second day of every new dose.

    My eyesight is better.
    My skin tags are disappearing and
    my scars are fading.
    I still have brain fog but only when I get too tired.
    My depression is much better,my anxiety is better but I have to keep a check on my temper. Probably because I am coming out of a very long fog and it's time to get it together. 

    Wishing you all the best Holiday season and a great new year . Redsandraven
    ________________
    Redsandraven: neurosarcoidosis dio th1 fatigue brain fog migraines bells palsey (neurological incident sept 05)|  6/13/06: 25D=20 1,25D=49| mino 100 mgs q48h  ben 40 mgs Ph 2

    Aussie Barb
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     Posted: Sun Dec 17th, 2006 05:40
    Summaries:

    Christina re JRA: personal experience.

    Vez Sarcoidosis: I feel stronger than I have felt in years

    Knochen cruising along Reiter's Syndrome 25+ yrs

    Chris progress: added to Sarcoidosis 20 months later ... and 20 months better.

    Aussie Barb
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     Posted: Sun Dec 17th, 2006 20:31
    DThomas: Sarcoidosis: Started MP 10/22...Day 54 on Benicar...Day 43 Benicar & Mino My family and I are greatly encouraged by my baby stepping progress. :D


    Benicar 40q6h / Mino 100mg q48h / avoiding light and protecting myself outdoors / avoiding D and folic acid / wearing Noirs and sunscreen with zinc oxide outside / Zyrtec as needed / probiotics / Flexeril as needed

    Yesterday I had the stamina to cook for two family parties and attended both and felt really well.  I am comparing the "wellness" to last year.  Last year I was only able to go to one party and I took one small desert for dinner, at that I was too tired to enjoy being with the family.  This year, with a new hope, I enjoyed the family and we were among the last to leave the party. The extreme fatigue I was watching for did not hit me.  I still have a long way to go, but I and my family are greatly encouraged by my baby stepping progress. :D

    Another plus, my weight loss is now 18 pounds...I had no idea I ate so much dairy! I have now lost all of my prednisone weight and a couple of extra pounds too!

    Watching and waiting.

    Debra

    February 2007:
    Proof that the MP is working...last year I couldn't put two thoughts together on paper, everything was a struggle! And now, after 3 1/2 months I feel confident in discussing these issues with anyone. (Medco re Benicar )

    My energy level is high and I still don't have any depression.  Yipee!

    March 07:
    I had the stamina to make deserts and have everyone over too!  Even 6 months ago I wouldn't have dreamed of doing that on the spur of the moment, but I didn't even think twice about it. All the food was ready in about 3 hours and I felt really good playing the hostess for all.  Thanks to the MP of course, otherwise the favorite deserts for future son-in-law Ryan would have turned out to be just a fleeting thought on my part.

    Thanks MP!

    July 07:
    I havent looked forward to weekends for a long time because I hated that brain foggy exhaustion that took over about half-way through a busy Saturday.

    But,  we got 30 kids quilts made at our quilting event and I had so much fun with my niece and nephew.  After sewing for about 6 hours and dealing with a 6 and 1 year old, I had enough energy to take them to see a movie last night.  I was tired, but not the weird brain-foggy kind of tired.  This morning I had no signs of a busy Saturday. My energy level is normal to high for me. In fact, I got up early and got me and the 2 kids ready for church and we got there on time! And, we had to take them home which is about a 5 hour round-trip. And I still feel good. (Sun protected of course!)


    I have no lung pain when I breathe, no pain in either the lower or upper part of my lungs, still SOB at times, but no pain.  Still no signs of depression! And, the bottom of my feet have stopped hurting!

    April 2008:
    Tomorrow will be 18 months for me! So I wanted to list a few things that are better.
    -My right knee doesn't hurt when I walk at all!
    -Finally, after about 6 years of taking sleeping meds I'm sleeping on my own and waking refreshed. Amazing. 
    -Voice is still very coarse, but the ability to talk waxes and wanes fairly predictably with the meds.
    -I don't seem to be as sun sensitive as I have been...but I'm still not pushing things very much.  :?  Taking very small baby steps to see how that goes.  
    -Weight loss is now at about 30 lbs or so.  I didn't keep up with it at the beginning...too much prednisone weight to fret over the numbers. And, I still need to take off about 10lbs. I'm losing about 1 1/2 to 2 lbs a week now. 
    - Prior to starting the MP I had many episodes where my epiglottis blocked my airway  -I have only had that happen once in the last year. (Sarc on the epiglottis has caused it to be malformed - remains the same)
    - I no longer have to borrow from tomorrow's energy for today...only someone who has done that will understand it. 
    -One of the most impressive is the "yeast infections"  I have had what was called a yeast infection more or less for 20 years, haven't had a problem with those kind of symptoms for 6 or 8 months!

    I'm sure there are more improvements that I just can't remember. It seems like the improvements sort of "sneak up" on you.  One day you just realize you don't have that problem any more and can't remember when you had it last.


    July 2008:
    My ENT doc visit last week. My voice is so much better.  I have most of the lower tones back, but I'm still missing some of the high tones. When I try to sing a high note I sound like an adolescent boy. :) It's very comical.


    Per the scope my vocal chords have very little inflammation now and all is "stable." My ENT is watching me very closely, IMO, more so, because I am on the MP.  He has a few sarc patients and I believe that he is comparing our progress. He has been telling his other sarc patients about the MP, so maybe he'll be a full fledged supporter in the future.

    Debra

    DThomas: the "Sparkle" is back. the entire winter with no SAD depression!
    ___________________
    Debra: 1991 Sarcoidosis lungs, skin, throat, sinus, MP10/06, D25 10, Synthroid, Ambien, light r/t working, NoIRs sunscreen, cover up, low lux home

    Aussie Barb
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     Posted: Sun Dec 17th, 2006 22:01
    Saphire: 3 Months 15 days/ 40mg Benicar Q5H - Day 7/100 mg mino
    The past week has seen an improvement in my stamina and in my digestive health.  Headaches and Thyroid meds gone.

    I have begun going out to Church and some Christmas events.  Almost all gifts were purchased on-line this year though. 

    As I'm at the 100mg level of mino, it seems time to start beginning preparations for Phase 2 of the MP.  My husband is going to have his D levels checked next month.  We just want to see what those are.  He has symptoms that would make it a wise thing to do.  The really hard thing to accept are the people around you that have fairly serious symptoms of  Th1 but won't even consider the MP as an option.  I guess just getting my own health back is a very worthwhile goal for now.


    Headaches are no longer a problem and the Dr. has said that I don't need my thyroid meds any more.

    Peace to all, Saphire

    ____________________
    Saphire: CFS, fatigue, digestive issues, brain fog, cold, tinnitus, low stamina, light sensitive, / NoIR's on, windows covered, avoiding D sup (8/06 1,25-D 31pg/mL, 25-D 29ng-nL)(9/29/06 25-D 31ng-nL)

    Aussie Barb
    foundation member


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     Posted: Sun Dec 24th, 2006 21:26
    Phase One Alumni Summary:

    Robertrr: Sarcoidosis: MP for 18 months: results just keep getting better and better.. 



    ____________________
    ♥Barb♥: Dx Inflammation - Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04-Aug2010| barbliv @ hotmail.com | ABC of MP| Barb's Story|
    Aussie Barb
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     Posted: Thu Dec 28th, 2006 05:22
    Christina RA 21 years: I've been very active which has been really great.  I have been totally overdoing it many days but I seem to recover much more quickly than I used to.  All in all I feel better.

    Member in Phase 2

    It's been quite busy this holiday season with all the Christmas shopping and festivities. 

    Yesterday I had a really good day and was very productive with cleaning the house.  I bet I climbed my two flights of stairs 20 times yesterday with only moderate amounts of pain.   Since I overdid it yesterday I was pretty sore today but I could tell it was overuse, not an RA flare-up.

    If I continue my upward trend, I expect to feel pretty good over this next week. 

    My food sensitivities seem to be lessening.  I've been eating pork again lately and also foods with milk in them and I seem to be fine.  Before these foods always made my joints scream.  I still have to be careful with the quantity of food I eat at one time.  If I stuff myself in one sitting I can count on major joint pain the next day.  Although I ate a lot of different foods over the course of the day on Christmas, the day after I was very productive and actually had a good arthritis day.  Weird - that would have NEVER been possible in the past.  So, it was either a Christmas miracle or an MP miracle....and I'm placing my bets on the MP.

    I will post more regularly again, now that the holidays are almost over.  I am expecting my days to become less busy now.

    I hope everyone is having a nice holiday season.

    January 2007:
    I have been noticing the oh so subtle improvements and even though I'm not close to being cured, I certainly realize how far I have come since day #1 on the MP.  I'm glad to have hope for the future.  I look forward to us living the majority of our lives disease free.

    January 31st 07:
    I have been very busy.  I have cleaned out every closet in my house and several cabinets.  I have actually had energy.  Now I need to conquer the storage area in our basement (UGH)!  I am actually looking forward to it BECAUSE I CAN DO IT!  :D  It's funny, even on my bad days I'm still pretty darn productive (relatively speaking).

    I just can't tell you all how happy I am I decided to do this protocol.  I am not well yet but I can tell I am truly moving in that direction.  It will be one year on March 5 and I am pleased with my progress.  It should only get better from here!

    see also:
    Christina re JRA: personal experience.
    Christina RA personal experience
    ___________________
    Christina
    : Age 35; Sero-neg RA 21 years; started MP 3-5-06; On 12-20-05: 25D=28, 125D=28; On 4-12-06: 25D=12, 125D=28; DX osteopenia due to pred overuse (now off); took all DMARDs w/no success; previous usage of Mino for a year, ceased 3/2/06; started Mod Ph2 8-5-06

    Aussie Barb
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     Posted: Sun Dec 31st, 2006 16:49
    captkirk
    Member in Phase 2

    One very important thing that I need to note:

    I am standing and sitting much straighter and taller;
    my breathing is much easier and deeper;
    and my shoulders are MOVING with NO pain, actually able to move my shoulder blades together!!
    This is something that I haven't done in 20 years!

    As of this morning - 5.30am Sunday, Dec. 31st, my Blood Glucose reading is 97mg/dL! and never once in the past week did it ever again get to 158mg/dL. I know that this is thanks to the Dr. Richard Bernstein's diabetic solution book and diet. It has been very successful for me and I hope that by the time I see the nurse again on Feb. 6 that my readings will all be within the normal range.
    ______________________
    Bree: Disabled since 1991; Primary Dx: FMS, muscle spasms, hypothyroidism, hypertension, back injury, MPD/DID. (Feb06-1,25D 34,25D 5) Meds: Vicoprofen, start P1 04/06; modP2 11/01/06

    Aussie Barb
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     Posted: Mon Jan 1st, 2007 03:44
    robyno: Mum of Matt 14 yrs:  A Happy New Year.. Matt continues to improve with each cycle. 

     Phase 3 commenced 20 Nov 06

    Matt's immunopathology has been tolerable. There have been no unwelcome surprises so far (touch wood!). Nothing has stopped him joining in everything over the Christmas period.  In fact, he has had a ball!  He has shopped and made bon bons and stayed up late (for him) and slept in late (for him) and watched lots of TV and wrestled with his brother and he was even the one who played "elf" this year and handed out all the presents from under the tree!  The last couple of years he has just sat there while everyone else rushed around, but not anymore............

    We have had a wonderful Christmas.  Matt got a new LCD TV with built-in DVD player for his room, which is a step up from the audio books that he used to get because listening to those was about all he could manage to do for so long.  He was in the thick of everything and really enjoyed having family visit from Melbourne.

    The really big news as far as Matt's symptoms go is that he can actually feel that his headache is barely there at all as he is falling asleep of a night.  That is big news - his headache is nowhere near as bad anymore, but to have it almost disappear for even a short period is very encouraging.  We are sure that the headache will be the next to go. 

    Matt can also be outside for short periods with his 10% glasses now, so he feels that his light sensitivity is improving markedly.  The invisible zinc is drying his skin out a bit so we nag him to rub sorbelene cream on to his skin as much as possible.

    On Saturday night the four of us went to the movies together for the first time in over two years.

    Regards, Robyn

    January 7th 2007:
    We all went to a friend's place for dinner last night and didn't get home untill after 10.00 pm, but it wasn't a problem for Matt.  We are finding that he is staying up later of a night and sleeping longer of a morning, just like a well teenager (and like he used to do before he got sick).  He is returning to normal more and more with each cycle.

    January 15th 2007:
    Matt had a real treat last night - after dark (~8.30 pm) he went over to a friend's place for a swim in their backyard pool.  He didn't have to worry about glasses so he was able to dive under the water freely.  Matt loves swimming and that is the first real swim he has had in over 2 years. 

    Last year he would have been in bed long before dark and he wouldn't have had the energy to stay in the pool for an hour like he did last night.  He was all smiles when I picked him up. 

    Matt said that it made a difference being able to lie down now - it wasn't that long ago that he couldn't lay down at all.  He seems to be ticking off symptoms
    at a great rate.....

    We are off to the Coast for a couple of weeks..

    February 3rd 2007:
    We had a great couple of weeks holiday at the Coast.  Matt has been able to swim,  dived under the water, eyes shut tight.  He had a ball.  The only time he had a sleep during the day was after his swim or other outings, and that was only for an hour or so.  There were even quite a few days when he did not feel nauseated at all, which makes a real change. We had some long walks along the beach as well.  He can also run a bit now and only needs his 10% glasses when he is outside in the sun.  He just keeps getting better and better.

    February 18th 2007:
    Matt has had another good week and is settling in to the new school year very well.  So far he hasn't missed a day.

    One change to report is that Matt has dropped his paracetamol down to only one 500 mg tablet per day, and often he even forgets to take that.  That must mean that his headache is nowhere near as bad as it used to be. 

    He is keeping up with his classes and homework in the three subjects he is doing (English, Maths and History) - his work load will increase as his fatigue and headache lift over the coming months.

    March 4th 2007:
    Matt has had a good couple of weeks at school.  He seems to go to school regardless of his herx and is taking things in his stride.   He joined in a lunch-time cricket game one day this week- he had a few bats and one of his friends ran between the wickets for him and he said it was lots of fun.  He has started to run himself a bit now so it won't be too long before he is doing his own running between wickets!  His teachers say that he is looking better and better each day.

    On Friday night we had another family over for dinner and Matt stayed up until well after his normal bedtime.  He joined in all the fun and his illness was hardly discussed or noticed.  I saw it as a real turning point for Matt and the rest of the family, to be just about normal again (at least when the sun went down!).

    March 20th, 2007:
    Highlights over the past couple of weeks have been some great games of cricket at school and having a friend over on the weekend.  He kept up with his friend very well, playing table tennis and kicking the footy and watching movies.  Just like a normal kid!  Another big highlight was that a good friend set up the TV in his room to receive pay TV - boy, was Matt pleased about that!  Now when we can't find the remote we know to look in his bed!

    Follow Matt's progress in Matt (15 yr) in phase 3 in the Phase One Alumni forum: improvements continue here.

    Matt (13 yr) starts his MP 13th Sept 2005 - Progress Report
    Matts improvements << January06 to Oct 06
    Matt 14 yrs: 1 year on MP Oct 06
     ________________________
    Mum of Matt 14 yrs 40 kg, Rickettsia+Lyme sympt, paracetamol, Lactobac, Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; 16Jun05:1,25D=22, 25D=27,12Sep05:1,25D=30,25D=21, 7Oct05:1,25D=27, 25D=24; 7Dec05:25D=12.4; 5Apr06:25D=10; 18Aug06:25D=8.8 Ph1:8Oct05;

    Aussie Barb
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     Posted: Tue Jan 2nd, 2007 19:15
    Sandy M: Sarcoidosis: exciting improvements...


    Member in Phase 3

    Something strange is starting!!  We celebrated the end of the year by going to the coast on 12/30/06.  I was able to walk out to each beach we visited, did not stay up on top of the beach!  I did not WALK as far as my husband and son, did not want to exhaust my body, but I was able to get to the water and toodle around.  Here is the strange (and wonderful) thing:  I DID NOT SLEEP ALL THE WAY HOME AS USUAL!  I actually stayed awake and was not fatigued!  I did not even go to bed until my usual time of 8:30pm that night!!  What is this?????  Is it my turn? 

    It might be time to ramp.....or enjoy.  Let's see, which one.....hmmmm, ENJOY!!  I will keep on slow and steady,

    So, Happy New Year to all and I am wishing me an especially Happy NEW year.  Keep on keeping on.  Slow and steady wins the battle AND we are all in this together!!  GO TEAM GO!!
    _______________________
    Sandy: Sarc lung, lymph, skin, suspect heart & kidney. 10/02 Mino only 6 months, off 6 months, 10/03 (D ratio 2.5) MP1, 2/04 MP2,  9/04 MP3 too early!! 9/04 revisited MP1, 11/19/04 MP2 , 2/8/05 mod ph2, 5/23/05 Ph 2 again,  Ph3 12/9/05

    Aussie Barb
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     Posted: Wed Jan 3rd, 2007 09:14
    shadowzone: CFS, LGS/Malabsorption/IBS, Rickettsia: about improvement in my lower back.


    Member in Phase 2 

    I have always slept on my sides because sleeping - or lying - on my back was uncomfortable, so I would need to either put something under my lower back, or put my knees up so that my legs were bent. I have had this mild problem with my lower back for years, but as it wasn't bad or debilitating I learnt to live with it and didn't really give it a thought.

    That is, until a while ago, when suddenly I could sleep on my back without discomfort! The MP has helped my lower back when I didn't even realise that it was much of a problem! Now that it's better I can see the difference.

    August 07:
    Cuts: Around February this year, I sliced my finger while cutting food. It was quite a deep cut, nice fresh blood, and cuts like that usually take forever to heal for me. But, on this occasion, it only took a couple of days. I've never had anything heal so quickly, I was amazed! It closed up so quickly, with barely a scab, and it healed entirely in only 3 days - no faint line or scar or anything. Usually even a scratch will leave a reddish mark on my skin for months, and I have several spots where it looks like I have scratches that haven't quite healed yet, but they have been around for so long, months and years, that I think they're actually scars now. I have a scar on my wrist that is from a cut that wasn't quite as deep, though it was from the edge of a plastic box so it might not have been as 'clean' a cut as this one from a knife. But still, to heal completely from a deep cut in next to no time was a very new experience for me, and it's exciting to get that glimpse into a healthy body's capacity to heal itself.

    _______________________
    Shadowzone: CFS, LGS/Malabsorption/IBS, Rickettsia | NoIRs Feb06, Phase1 Apr06, Phase2 Oct06 | D tests: Mar06 25D=17.6 1,25D=31 Aug06 25D=14 1,25D=29.3| Other meds: T3/T4=12.5/50, Endep 100mg.

    Aussie Barb
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     Posted: Fri Jan 5th, 2007 23:15
    Ames: CFS: the Holidays - my progress and activities..

    Aussie Barb
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     Posted: Sat Jan 6th, 2007 01:20
    Teri K.: Sarc / Lyme: this time last year I actually thought I was going to die from these symptoms... I thank God for you guys every day!!!!

    Member in Phase 2

    I can't believe how quickly time has passed. When I recall this time last year, how bad I felt and that I actually thought I was going to die from these symptoms......I am so much better (just after the first year!) I am so looking forward to seeing what the next year brings. I am still hoping to get my husband and son on MP.

    I don't get the chance to post too often, but I can't thank you all enough for what you are doing for all of us here on this forum. I honestly don't think I would be here today if I had not started MP.

    Thanks again, Teri
    ________________________
    Teri: Sarc/Lyme; Cardio, neuro, gastro, endometriosis, Toprol XL 25mg/day; 12/28/05 NOIR's/NO D; 11/18/05; 1,25=59,25D=26;Beni 2/6/06 @Q6H, Mino 2/17/06 QOD @25mg; Phase II 7/5/06; 6/26/06 1,25D 34,25D 13

    Aussie Barb
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     Posted: Sun Jan 7th, 2007 01:03
    CelticLadee: an edit to add noted skin improvements.. one of side benefits of the MP ...  being somewhat like a beauty treatment..

    AmyEliz: RA: my 'positives'.... an edit to add more good news.

    Matt Happy New Year 2007 better each cycle

    coolbeans tinnitus and other progress

    Guss Wilkinson: on Clinical trial

    Aussie Barb
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     Posted: Mon Jan 8th, 2007 23:05
    Aunt Diana: today my gums are so tight and solid and healthy ... It only took about 3-4 months on the MP for me to notice this change.


    Member in Phase 2

    All my life I have had gum and teeth problems.  ...periodental work galore, itching, bleeding and pockets..

    I had periodental work done in my early 20's and have had to struggle with it ever since.  I am the only person I know who considers a toothbrush the only thing I must have.....I flossed and brushed and used every kind of help I could to make my gums healthier. No avail.

    Along comes the MP....today my gums are so tight and solid and healthy that I can't even believe it. I have been able to give up my obsessive flossing and brushing and I have the healthiest gums of my lifetime. Right before gong on the MP, I had reconciled to the fact that one area of my mouth would always be bleeding, no matter what I did. No more.

    I am very grateful to see this undeniable change. It only took about 3-4 months on the MP for me to notice this change.

    see also
    Aunt Diana progress report
    Aunt Diana: I am definitely going in the right direction.
    _____________________
    Diana: Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker 2005, 10/1 started light & D avoid 10/12 d-25, D.1,25 32; 11/27 Beni40mg q6h 6/06 D <10; 1,25D 27; 6/11/06 Phase 2

    Aussie Barb
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     Posted: Tue Jan 9th, 2007 11:12
    D1: CFS: has been overseas and has graduated with high distinctions.

    Member in Phase 2

    Grace here,

    D1 has just come back from overseas in Laos and Bangkok. She stayed on benicar and mino 50mg x 2 daily. Started few days before she went over.

    Now the fun bit.......We were concerned with MP and light heat etc......She did really well {no herx with extra mino ;) }. She said she was able to cover up -plenty of air con, avoided D foods - wasn't easy, no upset bowels etc - no ice. She said she had much more energy than 2 yrs ago :D. That at times she was more well than some of the well people, and  they had to ask if she was sure she didn't need a rest, as they did.

    She got a head cold just before coming home-they all did 6  people per room staying in at a back packers. The 3 day traditional Lao wedding of her friends was an experience she will always treasure.

    She also graduated from uni with lots of HD - degree in PR. When she started 4 yrs ago I wasn't sure if she would ever be well enough to finish. Although she did drop law. She will be doing a bit of study on line this year so she can really kill lots of bugs before she is well enough to work.

    She has more energy and can see the improvement in her muscles.

    Thanks

    Grace

    March 2007:
    D1 is going OK. She says you  know when you're getting a bit better as you get bored. She is doing more, but this level of combo has slowed her down again. Depending on herxing she does find her study easier because she can do it at longer length of time, and able to think better.

    For many years she has not been able to drink fluoride water as it would make her sick with GI symptoms. For the last 2 months she has been able to drink the tap fluoride water with no ill effects.:D

    July 2007:
    D1 has finished her big project and event. She did really well, and has had a lot of praise from many mental health organizations.:):) She plans to start working part time early next year.

    She is out socializing a least once every day/night.

    __________________
    D1: CFS, MP 03/06, 10/04 D25=25 D1,25=63,3/06 D25=28 D1,25=50,05/06 D25=18 D1,25=51. Benicar 6hrly, Ph2 6/08/06, Noirs

    Aussie Barb
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     Posted: Tue Jan 9th, 2007 19:49
    TRANSPLANT talk (pre MP): Jillbc and the Fisherman

    Periodontal Disease  (pre MP): Robertrr

    Lori - Lyme Edit to add new improvements..

    Aussie Barb
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     Posted: Mon Jan 15th, 2007 01:13
    mike9a: Chronic Lyme, CFS, Stroke: monumental change forward in level of activity.

    I have finally made it to Phase Two. 

    I had no problems getting back onto the MP treatment after my cyst was surgically drained and healed and I was done taking the Cephalexin. My overall health did not regress while I was off the MP meds.  It seems like I have maintained the progress that I have achieved on the MP. I was able to re-establish the Benicar blockade with no problems.  Once that was in place, I went through Phase One with no problems.  I have started Phase 2.

    I have made some more progress in my overall health.  The biggest problem that I have is crushing fatigue.  It has kept me basically bedridden for many years.  My daily activity has been very limited for all these years.  A normal day for me has always been 35 minutes of activity, then 30 minutes of bed rest, 35 minutes of activity, then 30 minutes of bed rest, etc, for the entire day.  The bed rest is complete bed rest, eyes closed, in bed resting.  Not talking, reading, or watching TV; just complete bed rest.

    I have tried for many years to increase my activity times to 40 minutes, but I relapsed every time.  A few months ago, during Phase One of the MP, I was able to increase my activity times to 40 minutes!  A normal day for me became 40 minutes of activity, then 30 minutes of bed rest, 40 minutes of activity, then 30 minutes of bed rest, etc, for the entire day.  This may not sound like much of a change to healthy people, but for me, it was a monumental change forward.

    And now I've done it again!  I have been able to increase my daily activity times to 45 minutes!! Now, a normal day for me is 45 minutes of activity, then 30 minutes of bed rest, 45 minutes of activity, then 30 minutes of bed rest, etc, for the entire day.  This is a major change for me.  The only thing that could have made this possible is the MP treatment.  I was treated for years for Lyme Disease by two different Lyme docs.  The treatments resolved many symptoms and helped me a lot, but they didn't get me all the way back.

    I'm also noticing a positive change in my right leg.  I had mentioned in my Phase One post that "my legs feel better, there is less fatigue in my legs. They seem to have a bit more life in them. I have been able to slowly increase my daily activity."

    My right side was damaged by the stroke.  Now, I'm able to exert more with my right leg, and I can put more weight on my right leg.  The only treatment I'm on is the MP!

    Mike
    ____________________
    Mike: Chronic Lyme/CFS/Stroke; initial D tests Jan 2006 25D=16ng/ml 1,25D=55pg/ml, Sept 2006 25D=less than 4ng/ml 1,25D=40pg/ml; avoiding light & D, wearing NoIR's; Benicar 6/21/06 40mg q8h; Mino 10/5/06 100mg;

    Aussie Barb
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     Posted: Mon Jan 15th, 2007 06:27
    Edit to add more  to
    ShrnHml / Sharon CFS MCS EBV MVP TMJ PCOS 28 yrs.

    Vast Improvements noticable on break..

    Aussie Barb
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     Posted: Tue Jan 16th, 2007 22:45
    Rainbowcatcher: 72yr old: Sarcoidosis: MP has halted further disease progression and given the gift of expanding her life.

    LINKS to Member progress and improving Health
    Resource of individual links to Members recovery experiences

    Mkap2nd chronic neuro tick illnesses: Physical and Emotional improvements: addition today.

    JudyBeauty: CFS Phase 2 Life is good. I love the Marshall Protocol.

    PatrickBurke Sarcoidosis: list of improvements to my health since the MP

    Wytnez Sarcoidosis: 2 year Anniversary - Phase 3 update

    Aussie Barb
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     Posted: Thu Jan 18th, 2007 03:37
    jillian: I wanted to celebrate a major improvement. I'm not cold all the time!


    Member in Phase 2

    Being frigidly cold (not just in winter) has been at least a 20 year issue. In fact, even when I was out of bed, I'd use an electric blanket around me because I just didn't seem to be able to generate heat on my own (even with hooded sweatshirt, couple of shirts, and at least two pairs of pants, one of which was sweatpants). I had to use an electric mattress pad which never got turned off with 12" of down comforters on top of me in order to keep warm enough to sleep.

    I still gently warm my bed with the mattress pad before getting in, and sometimes it gets left on for awhile if my immune response is high, but that's not even one quarter of the time. I'm using only the lightest down comforter, and even have to shed that some nights.

    'til later,
    Jillian

    see also
    Jillian My posture is different
    Jillian Sarcoidosis I cannot believe how different I feel, how wonderfully different.
    Jillian: Sarcoidosis: Miracles have happened
    ______________________
    Jillian: PrimryDX: PulmoSarc'79, FMS, CFIDS, etc; disabled '93; Oct02: 1,25D=42 25D=27 NOTfrozen; Apr05:25D=10; Jul05:1,25D=26 FROZEN. avoidD/ Noirs etc. since Aug02; P1 Oct05-Feb06; ModP2C Feb-Nov/06; P2 Nov14-Dec/06; ModP2 Jan7/07.

    Aussie Barb
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     Posted: Thu Jan 18th, 2007 19:48
    BradW_inGA: ALS: my R index finger will now open almost fully and I can extend it.. This is Great!

    I held off posting this for several days.... just in case it didn't last. I started having involuntary twitchs in my right thumb and index finger.

    MY RIGHT INDEX FINGER WILL NOW OPEN ALMOST FULLY AND I CAN EXTEND IT WITHOUT EXTENDING THE FINGER NEXT TO IT! IT IS RIGID ENOUGH THAT I CAN PRESS BUTTONS AND FLUSH THE TOILET USING ONLY THE RT. INDEX FINGER!

    I have very limited use of my hands... THIS IS GREAT!

    :D :D :D :D :D :D :D :D

    _____________________
    Brad in GA: ALS, On Benicar only, D tests 11/27/06:1,25D="normal?" & 25D=56, avoiding light & D, NoIRs in use / Beni comm 12/08/06 Q6H,
    Mino comm 12/27/06 25mg/48 hr intervals

    Aussie Barb
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     Posted: Mon Jan 22nd, 2007 02:18
    jacque wrote: I AM RECOVERING

    Member in Phase 2

    I was bedridden for four years and have also only been outside in a wheelchair.

    I am now able to care for myself and my three children. Well we care for each other. I don't fall down anymore. My symptoms are much less in severity and even waxing and waning to the point where I know I'm recovering Doc is so impressed.

    I do not need strong painkillers and I don't take sleeping tablets anymore. My test results are also improving with less thyroid drugs needed. I use valium sometimes when I feel neurological problems coming on this only happens if I push myself to far.
    If I rest enough and eat well I even have days where I feel like I did when I started getting sick off colour is how I describe it, I am so happy to feel off colour. I am so grateful to the MP and everyone involved in helping. You are giving me my life back. 7 months ago I was in a wheelchair most days, no amount of rest helped me I just kept on getting worse my family and friends tell me that they missed me, because I did not exist for the last seven years, I could not talk,walk,or think.

    Last week I had a day when I felt so well I was able to take my children to the beach and I even walked along the shoreline. I have been on the Marshall for nearly two years and the recovery is slow but I AM RECOVERING. Moments, Hours,now even DAYS. I sometimes lose heart and wonder if I am ever going to feel well and I beat myself up because I used to be totally self reliant, then I remember how far I have come. When you are in the worst of it you focus on moments then you can't imagine a life without sufffering it becomes normal to you.

    I just wanted you to know recovery is very real thanks to The MP sneaks up on you but its real. I really know that now, and I can say that without theory, I say that with experience. :D

    February 2007:
    I have completely been able to stop my sleeping tablets. I still have some nights when sleep does not come easily but it is wonderful to not rely on tablets.

    ___________________
    Jacque: Rickettsia, CFS, et al: May05 Benicar 8 hrly,  Phase 2 started 8-Nov-05. restarting Jan07.

    Aussie Barb
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     Posted: Thu Jan 25th, 2007 21:27
    doveindian wrote: Being able to see yourself come alive a little at a time, step by step with others holding your hand as you walk this road.

    Member in Phase One

    I went to the Dr's today. I am so surprised that he is behind this. If you knew my Dr. you would understand why I say that.Maybe he always acted the way he did because he could not gave me any hope. Now he can and he is acting so much kinder.I have been going to him for 10 years now and he has never been this nice or gun whole about anything like he is about this. It is so nice to see his human side. Most of us has been through so much when it comes to DR. At less I have.

    Sometimes it was hard to keep my head up and fight because they would make you feel it was in your head, even though the test would say it was not. I hated being a woman at times because they would blame it on that , even thought the test would say it was not. Even though I feel really bad at times, it lifts me up to see the change in my DR. I will be so glad when The MP becomes a standard treatment. I guess we who are on it right now are showing are Drs that it works. When others come into their office with the same thing we have, They will think about putting them on MP. That makes me excited. To think that someone may not have to go through what I have.

    Eyes: I went to read something this morning and I put on my glasses and I could not see, So I took  off my glasses and I could see what I was reading.I hope my eyes stay like this or even gets better.

    and : I know it is a long road but,the little things that you can see change makes it some how a little shorter. Like being able to fix something to eat and eating it at the table instand of eating it in bed.:)Seeing the smile on your children because you are out of bed even if it is only for a little while.:)Being able to see yourself come alive a little at a time, step by step with others holding your hand as you walk this road.

    Dove
    _______________________
    Dove: cfs, fms, RA, neuropathy, Dr thinks MS| neurontin 800q3day percocet5/325q4aday| ph1 avoiding d,sunlight/light started Nov31 Ben40mgq8h, Dec4 min25mq, Dec16 min50mg Jan9 mino75q48h

    Aussie Barb
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     Posted: Sun Jan 28th, 2007 17:52
    Ken Faucher CFS 20 years: Phase 3 update - 2 year progress

    Grace All the things I can do. updated.

    A Journey Towards Complete Recovery From CFS: An UPDATE of My Progress on the Marshall Protocol by Amy Proal (Ames)

    JRFoutin Update to Phase Three - recovery

    CJ new add: I can breathe in the cold air now..

    Freddie Ash: new good things.. I am moving on up with the cure from the Marshall Protocol as the crime fighter.

    Katydid: CFS Update

    Vicki SA: CFS update


    Melinda Lyme Phase 3 recovery update

    Last edited on Wed Feb 7th, 2007 23:07 by

    Aussie Barb
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     Posted: Sat Feb 10th, 2007 02:31
    bookdad: Sarcoidosis: I have done so much the last 2 months that I would never have been able to before. I thought that I would slow down as I got older, but it seems with this protocol, my capacity has increased dramatically.:cool:


    Member in Phase 3

    :D I am currently continuing the 3 abx and joyfully plugging along! as I told a friend at work, its only because of the MP that I am able to work at all.

    I am renovating that room and it has taken from 4:30 every day until 12 or later at night, and all day every saturday. Before, this would have put me in the hospital.

    In case you didn't know, I hate hospitals!!! They have people that look like normal nice folks running around with trays full of sharp things :shock: to stick in you when you aren't looking, and they expect you to let them! Then they give you a bill that puts you back in the hospital!!! Whats wrong with this picture??

    No whistling in the ears (usually right) this morning (YAY!!!) that issue is resolved, at least for today.

    Lastly I am considering going back to school. I want to earn My pHD in physics. I think now that I have a half a brain, I might be able to do it. It's amazing that I graduated (2003) with a 3.8 gpa with this stuff in my head. I can't wait for my memory to return, I have had a little of it come back already. :D Well back to work...

    March 2007:
    Hi all! I spent the week end outside pretty much Friday, and Saturday gardening, cleaning up my yard after these many months of neglect. I used my covering and did okay. Actually it was great! Saturday I had to quit and go in in the afternoon and take a nap, after which I went back out for more work.

    I am trying an experiment to see where my levels of tolerance are now. So far so good. I have had little or no effect even today except tiredness. I was able to attend church and teach class just fine. Contrast this with a year ago when I would have great problems breathing, lots of pain, no brain function, and heart palpitations. What a difference!

    Brain function seems to be on track and the confusion that I took for beginning senility has all but dissapeared rearing its ugly head only breifly from time to time.

    The energy level is way up. I have all but lost the chest pains and my leg cramps are gone. I am so looking forward to getting my life back and although I am not pushing it I am seeing wonderful improvements. slow and steady wins this race. It is wonderful that I can even venture outside and dip my toe in the pool of outsideness now without paying a heavy price. Thanks again Dr. Marshall!:dude:

    April 2008:
    Dr Marshall. I want to say how appreciative I am that your science is real and it works. My gradually elevated level of quality of life, and that I am living, is proof of that.

    Bookdad: Sarcoidosis: I am doing so much work now.
    Bookdad in Phase 3 Listing improvements
    Interview with Bookdad - sarcoidosis, rheumatoid arthritis
    Doing MP and taking care of a Family.

    _____________________
    Bookdad: DX Dec 2000 Pul Sarc & RA: prednisone. Mar 01: off pred| lymph sarc04: mod eyes memory sx| Sep 05: NoIR| 11/05 d-rat 3.2|Ph1 Nov05 Ph2 Ph3 AUG 06

    Aussie Barb
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     Posted: Sat Feb 10th, 2007 05:54
    migsies: Clearly, the field of psychiatry has much to learn from the MP! ... 



    Member in Phase 3

    I had a lot of neurological immunopathology one year into the MP, but then it started to lift. I still have a lot of cognitive immunopathology but the emotional rollercoaster is practically gone.

    I presume a lot of the bugs that over the years gave rise to insurmountable headaches and a myriad of symptoms are falling victim to the MP.

    Until this year, I never would have imagined that what the docs considered to be unrelated "depression" could be cleared with a combination of ARB and antibiotics!

    Clearly, the field of psychiatry has much to learn from the MP! I hope my experience helps you put your journey on the MP into context!;)
    _____________________
    Migsies: fibro, lyme, babesia, insomnia, chronic infections; klonopin, neurontin, trazodone; 7/06 1,25D=28 25D=12; avoid D & sun; NoIRs; Beni q8h; Phase I 8/05, II 10/05, III 6/06

    Aussie Barb
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     Posted: Sun Feb 11th, 2007 00:21
    PatrickBurke Sarcoidosis: list of improvements to my health since the MP - Phase Three Update!

    Betsy G update recent improvements - physically and mentally

    Prugg21 Pam: MCS/CFS/FM 22+yrs: making encouraging progress on the MP.

    Last edited on Sun Feb 18th, 2007 01:51 by

    Aussie Barb
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     Posted: Sun Feb 11th, 2007 22:46
    Andy Sarcoidosis: I think back to how sick I was a year ago, and didn't know what was wrong, or what I was going to do.

    Member in Phase 3

    Dec 06: We had a record snow yesterday, consequently a lot of shoveling and physical exertion the last couple of days.

    Jan 07: I have been working a lot of hours the last few weeks. Fortunately I was able to get a 3 day weekend this week, so I am catching up on rest.

    Been getting quite a bit of exercise on the treadmill and stationary bike.

    Feb 07: Everything really seems to be going fairly well right now. Particularly as I think back to how sick I was a year ago, and didn't know what was wrong, or what I was going to do.

    I was able to go running yesterday first time this year, the weather simply has not permitted it for a while, I ran about 2 miles.

    July 08:
    I am running and lifting weights 5-6 days a week.

    Feeling quite well, have been travelling quite a bit this summer, both personally and on business.

    Thanks MP.
    ___________________
    Andy: Pulomonary Sarc, March 2006, Nasal Allergies, TMJ Myofascial pain/Clarinex Astelin Probiotic/ June 13 D-125 29 pg/ml / August 23 D-25 13 ng/ml/ October 18 D-25 < 7 ng/ml/ Phase 1 comm 13May2006 / Phase 2 comm 5July2006 / Phase 3 comm 12November2006

    Aussie Barb
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     Posted: Thu Feb 15th, 2007 01:06
    eClaire: I have brief periods where my ability to reason, which took a major dive in the last five years, improves and my memory for language improves (something that has always been a bane to my existence). 

    Tonight, at Valentine's dinner, I was able to remember my favorite Irish toast, a toast I have never been able to remember to actually say when toasting.  And so I'll share it with you: 

    Grant me a sense of humor, the saving grace to see a joke.  To win some happiness from life, and pass it on to other folk. 

    There, you see, I remembered it again.  THIS is truly amazing!

    Claire
    ____________________
    Claire: CFS 40+yrs FMS MCS COPD IBS osteopenia tinnitus neuropathy TMJ GERD| Beg: 1,25D-48 25D-26.1 SED 1 Alk Phos 157 chol 299| diet mid-Oct| NoIRs| PRN Hydromorphone Valium Flurbiprophen Milk Thistle | 12/3/06 Beni; Phase 1, 12/26/06 Mino

    Aussie Barb
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     Posted: Sun Feb 18th, 2007 02:04
    D2 CFS: 1 year on MP. enjoys improved health and Life.

    Member in Phase 3

    Grace here. re D2 daughter:

    Before xmas D2's friends at different times, including those who don't see her much and don't know what she has and MP, have all said how much better / healthier she looks:D. She has been able to leave the house more. Her strength has improve-challenge with an arm wrestle. You can see the improvement in her muscles  tone . I notice a while ago when she hugged me that it was too hard. I thought she was just being more sincere, but lately 2 of her close friends have also said she is hurting them when she hugs.;). Her close friends always ask her now if she has her benicar before going out

    D2 was just 15yrs when she got cfs. Her self identity had not yet been fully cemented. Many times she doubted who she was. I always reassured her she was still who she always was, but it was just hidden behind layers of illness. She is now so excited rediscovering this fact as her beautiful identity is revealed as layers of illness are being peeled away.

    Before MP she had struggled with going away with  friends, and of course with sun exposure, her anxiety would greatly increase. She had lost all confidence that she would EVER been able to leave town, which she has been unable to do for 2 1/2 yrs. So I took her a trip to Sydney for holiday.

    She was so excited and concern if she would be well enough. When traveling on the bus she said loudly excitedly{had her Ipod on} that she could see the sea.{she is now 19yrs}. Now I am not the teary sort, but this was one of those moments. We had a ball in Sydney. Standing at lunch time in Pitt St Mall laughing our heads off, lost of course, we didn't care. Yes people still do look at the MP fashion statement, but maybe they though we were on something- we are MP there is no getter High,:D when not herxing :X 

    We got over to Manly and she dip her toe in the water. D2 looked longly at the surfers-she used to surf. Commented that you would have to know that you were strong enough to paddle, but maybe a skin would be OK to wear if she had to. She just shopped and shopped-clothes of course;). For days after when we got back home she keep on thanking me saying "you don't know how much it meant to her". I think I have some idea. ;) She is now planning a snow trip for winter-she used to snow board, and maybe squeeze in another trip to the coast before winter.

    She is also enrolled in one class a week in the evening.The course is a uni prep. She is so excited.

    Herxs come and go here. She has made the connection that her 'anxiety feeling' is worse if she has not been watching tv/ resting during the earlier part of her day.

    Thanks MP team:D

    July 2007:
    D2 has grown 1 to 2 centimeters. Looks stronger and has put on a bit of weight.

    She had her birthday last month and was able to reflect that on her 18th, before MP, she was so sick and anxious. On her 19th, 3mths into MP, she was too ill to go out at all. Her 20th, she has had so much fun had many friends here, and then they all went out and played golf at the driving range.

    She also is out most nights of the week!!!!:D

    She is planning to go to Uni and  study more next year and is looking forward to the experience as she has missed out on so much.

    September 2007:
    D2 is progressing well in Phase 3.

    She has just completed her Uni Prep and got a UAI of 85. She was so thrilled with her self and keep telling us, herself and any one else "see I am not so dumb after all". I become ill when she just started high school and didn't keep on top of her work. She just was winging it, then she started to get serious when she got ill in year 10. She is so looking forward to going to uni next year and have more of a normal life. She will have to start part time, and the disability office there is really great. Only 5 mins down the road from us.

    The other huge news from her is that she got to the snow and was able to do some snow boarding. She has not been there for 4 years since she got sick. This has been a big dream for her to get back up there. She had this biggest grin on her face for days. When she heard me telling some one she just keep looking with this silly happy grin. She was sore and tired,but she did it!!!!!!!!!

    Her sister D1 commented to me how D2 has got much more confident and not so 'paranoid', and more social. I said it was because of  her TH1 and asked if she can't remember what D2 was like before she got ill. She said she couldn't. Just as well, as I could as I had to keep telling D2 it was her disease and not her. It is so nice to see the layers of this TH1 peeled away for ever.

    Thanks everyone

    Grace

    April 2008:
    increase in height: D2 was 15yrs when she got CFS, and we thought had finished growing. She started MP when she was nearly 18yrs, and has grown at least 3 cm / more than an inch since.

    _______________________
    D2: CFS 3yrs.MP3/06, Benicar 6hrs, 2/05  D1,25=62, D25=33, 3/06 D25=13,
    7/06D 1,25=34, D25=.6,  Noirs

    Aussie Barb
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     Posted: Sun Feb 18th, 2007 05:20

    Aussie Barb
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     Posted: Sun Feb 18th, 2007 19:52
    MarkN: My improvements so far, big and small:


    • Blood sugar much better, not crashing in between meals
    • Thyroid better, without a thyroid supplement
    • Knees & joints are improved ..... sometimes .... so I know they are getting better
    • Sleeping like a rock, and I actually have energy sometimes
    __________________
    Mark: ADD, general insanity (or ????), unofficial CFS, minor joint paint ...
    11/06 D Test:1,25D=37 25D=43 ... 12/06 Avoiding D ... 1/07 Benicar q8h, 1/16/07 mino q2d, daily probiotics/minerals

    Aussie Barb
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     Posted: Sun Feb 18th, 2007 21:04
    smccavanagh I am making great progress.
    Member in Phase 3

    No migraines. Not many body pains

    July 2008:
    I am one of the success stories of the MP and although I am not symptom free yet I live an amazingly full life and can hardly contemplate how sick I once was ( when I was at the point where I thought I would have to give up work! ).

    In summary, I have been on the MP since Aug 05 and have made slow but steady progress. At this point I have very little sleep disturbance. I have some aches in my right hip that come and go .

    Thank you so much for the MP which ( despite my lack of posts) has been a breakthrough in my life whan nothing else worked. 

    regards, Suzanne

    __________________
    Suzanne: CFS, D tests June 05 25D=32.8 1,2D= . avoiding light and D, NOIRS Aug 05, Benicar 40mg q8h 26 Aug 05| mino q48h 25 mg 10 sep 05| mino 100mg 22 nov 05| Phase 2 - Feb 06| Phase 3 - 17 feb 07.

    Aussie Barb
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     Posted: Tue Feb 20th, 2007 01:59
    DrVikki Lyme co-infec: Phase 3 update: 19 months on MP. more improvements

    Ival: RA: update: gone back to work. MP 21 months.

    Aussie Barb
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     Posted: Wed Feb 21st, 2007 22:20
    Leesa: Sarcoidosis: Uveitus: I would never be daring enough to travel out of the country by self as sick as I was before.


    Member in Phase 3

    I have to share with you....I am writing this post from my favorite place in the world...Antigua, Guatemala.:D:D  I have dreamed of returning here to visit since I became left two years ago...but was too sick. This place and this trip got me through the months of total darkness my first 6 months....During the start of the MP, I put money away to reward myself with a trip to Antigua to celebrate my recovery....I AM NOW HERE!!! I am not fully recovered, however I know I will be and sooner rather than later. This is where I first noticed my sarc symptoms 2 1/2 years ago, as I lived here in Guatemala while adopting my son.

     Now him and I are returning for a 9 day visit. I am probably getting more sun than normal due to fact that we walk alot....but I promise to be a bit more careful when I get home (not now...I am having too much fun:):):)). I owe this trip to the MP....I would never be daring enough to travel out of the country by self as sick as I was before. THANKS to the MP staff ...I will have a margarita for you all!


    see also
    Leesa Living Life again
    Leesa wants to share progress