 |
| Author | Post |
|---|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 387 |
| Status: |
Offline
|
|
Posted: Mon Sep 11th, 2006 04:29 |
|
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)
Jane Taylor-Aoki (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?
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 387 |
| Status: |
Offline
|
|
Posted: Mon Sep 11th, 2006 04:30 |
|
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 
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 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
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 387 |
| Status: |
Offline
|
|
Posted: Mon Sep 11th, 2006 04:33 |
|
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
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 387 |
| Status: |
Offline
|
|
Posted: Mon Sep 11th, 2006 04:55 |
|
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
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 387 |
| Status: |
Offline
|
|
Posted: Mon Sep 11th, 2006 04:57 |
|
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 2007: I'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.  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.
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 01:18 by
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 387 |
| Status: |
Offline
|
|
Posted: Mon Sep 11th, 2006 05:08 |
|
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! 
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! 
_____________________
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
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 387 |
| Status: |
Offline
|
|
Posted: Mon Sep 11th, 2006 05:15 |
|
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.
Hang in there and stay in touch,
Pippit
Diagnosis: Neurosarcoidosis
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 387 |
| Status: |
Offline
|
|
Posted: Mon Sep 11th, 2006 05:20 |
|
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
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 387 |
| Status: |
Offline
|
|
Posted: Mon Sep 11th, 2006 05:22 |
|
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
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 387 |
| Status: |
Offline
|
|
Posted: Mon Sep 11th, 2006 05:24 |
|
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
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 387 |
| Status: |
Offline
|
|
Posted: Mon Sep 11th, 2006 05:30 |
|
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
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
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 387 |
| Status: |
Offline
|
|
Posted: Mon Sep 11th, 2006 05:35 |
|
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
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 387 |
| Status: |
Offline
|
|
Posted: Mon Sep 11th, 2006 05:39 |
|
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
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 387 |
| Status: |
Offline
|
|
Posted: Mon Sep 11th, 2006 05:43 |
|
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."
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 387 |
| Status: |
Offline
|
|
Posted: Mon Sep 11th, 2006 05:47 |
|
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 .....
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 387 |
| Status: |
Offline
|
|
Posted: Mon Sep 11th, 2006 06:27 |
|
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! 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
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 387 |
| Status: |
Offline
|
|
Posted: Mon Sep 11th, 2006 06:39 |
|
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
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 387 |
| Status: |
Offline
|
|
Posted: Mon Sep 11th, 2006 06:44 |
|
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
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 387 |
| Status: |
Offline
|
|
Posted: Mon Sep 11th, 2006 06:57 |
|
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
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 387 |
| Status: |
Offline
|
|
Posted: Mon Sep 11th, 2006 07:01 |
|
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
|
Current time is 22:52 | Page: 1 2 3 4 5 6 ...   |
|
|
|
|
