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Aussie Barb
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Posted: Mon Sep 11th, 2006 18:43 |
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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
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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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Aussie Barb
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Posted: Mon Sep 11th, 2006 18:57 |
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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
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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!
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Aussie Barb
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Posted: Mon Sep 11th, 2006 18:59 |
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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
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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
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Aussie Barb
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Posted: Mon Sep 11th, 2006 19:02 |
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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 . Sure I still crash when I have done too much for this level of returned health .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.
2. I was able to go hire them
3 Really enjoyed them.
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
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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
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Aussie Barb
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Posted: Mon Sep 11th, 2006 19:05 |
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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 ..... Lee
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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
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Aussie Barb
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Posted: Mon Sep 11th, 2006 19:08 |
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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.
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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
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Aussie Barb
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Posted: Mon Sep 11th, 2006 19:11 |
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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
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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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Aussie Barb
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Posted: Mon Sep 11th, 2006 19:17 |
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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 (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
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 .
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 . 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 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 . But NOTHING happened. NOTHING at all . 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 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 . 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 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 .
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 .
see also
PatrickBurke: return to Life
PatrickBurke: counting my blessings
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Pat. Pulmonary Sarcoidosis dx 5/04; No D tests; Avoiding D/light+noirs since 6/04; Benicar 40mg q6h; Mino 100mg q48h; abx 3.
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Aussie Barb
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Posted: Mon Sep 11th, 2006 19:29 |
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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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Aussie Barb
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Posted: Mon Sep 11th, 2006 19:38 |
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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
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Aussie Barb
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Posted: Mon Sep 11th, 2006 19:45 |
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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.
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Aussie Barb
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Posted: Mon Sep 11th, 2006 19:50 |
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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
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Aussie Barb
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Posted: Mon Sep 11th, 2006 19:54 |
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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
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Aussie Barb
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Posted: Mon Sep 11th, 2006 19:58 |
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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.
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. 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.
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Aussie Barb
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Posted: Mon Sep 11th, 2006 20:04 |
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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 
see also
Fisherman Update
1 year update
TRANSPLANT talk (preMP)
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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
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Aussie Barb
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Posted: Mon Sep 11th, 2006 20:19 |
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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
-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.
Wishing all of you well, gently! Donna still cruising ________/]_________
see Donna Update Oct06
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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
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Aussie Barb
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Posted: Mon Sep 11th, 2006 20:23 |
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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 ...
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 .
'til later,
Jillian
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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.
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Aussie Barb
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Posted: Mon Sep 11th, 2006 20:27 |
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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
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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!!
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Aussie Barb
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Posted: Mon Sep 11th, 2006 20:30 |
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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
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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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Aussie Barb
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Posted: Mon Sep 11th, 2006 20:33 |
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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
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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]
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