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Aussie Barb
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Posted: Mon Sep 11th, 2006 13:28 |
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LH1953: Lori: w C LYME: MCS IC Asthma ... How grateful am I.
Jan 3rd, 2006
I am Happy to say that the New Year has started off in the right direction for me.
I am now totally off the 4 meds I used to take for Interstitial Cystitis. (After 8 years)
My colonoscopy in Nov., is now normal. (Past 3 showed inflammation through the intestines) My fissure is finally almost gone. Life is good!
Jan 18th, 2006 re Fragrance:
It is now 9:45, and I have been home for 1 1/2 hours, still not in need to shower the fragrance off of me. I spent 2 hours at the Mall, after 3 months of being home. Before I started the MP, I would get so sick from a trip to the Mall. My throat and ears would swell, and my lungs hurt terribly. If I did not immediately shower, I would become worse. I can smell the fragrance, but, my body is not reacting. Thank You MP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I can't believe how lucky I am to be on the MP. I feel like a little kid, a new lease on life, a DO OVER, a second chance!
Forever Grateful:
May 3rd, 2006: Dear Dr. Marshall and Staff. Words can not express how grateful I am, and will ALWAYS be for having discovered the MP.
This weekend, I had the pleasure of being able to not only attend my daughters Bat Mitzvah, BUT, made it through the WHOLE day! I know that you are directly responsible for that. My greatest gift in life outside of my family, is having the opportunity to do the MP.
You have given me the hope of having a better quality of life again. This weekend only proves that the best is yet to come. Dr. Marshall, as I type this, tears are swelling in my eyes because, I have missed SO many family fuctions due to my health these past years, I still can't believe I was actually there. I will never be able to THANK YOU enough! I will continue to spread the word about the MP, and help others as much as possiable. Sending you hugs and kisses. Love, Lori
Sep 12th, 2006: I have more relief in the 1 year on the MP then the 4 years under treatment for the Lyme. I am off of 8 meds, and my light issues have improved. I do stay mostly in the house. I have a quality of life in the house that I have not had anywhere else in years! I can walk a straight line again.
Dec 2006:
Hi All, OK, this is BIG stuff for me, I went food shopping/banking/drove the car today, ALL BY MYSELF . This is huge for me, I know it sounds crazy for most, but I have been unable to do this for years.
Jan 07
My MCS is getting better. Lungs: I used to sleep at an 85 degree angle, almost totally upright, no pillow because I could not stand the pressure of the pillow on my lungs. Now I am able to adjust my bed to about a 40 degree angle with pillow.
My food intolerance to wheat, corn and milk are improving on the MP. My interstitial cystitis limits my food as well, but is improving on the MP. If I eat foods that I can not tolerate, it increases my MCS which in turn exacerbates my Asthma, making for painful lungs. Foods can also make me weak, dizzy and extremely tired, ALL are improving on the MP.
January 5th 07:
The most amazing thing I experienced yesterday was when I hit my elbow - electrical shock from the elbow, down into every finger tip. I have NOT had too much sensation in this arm for years. This is truly incredible!
I have also been able to lay on my left side for brief periods at a time. In the past this was impossible. I would get severe pain in my neck, under my left arm.
THANKS MP!!!!!. Lori
March 2007:
I had the most wonderful weekend last week. We went to Disney. This was the first time I was able to stay OUTSIDE ALL DAY in a year and a half!!!!!. I cut back on the ABX, and it was a very CLOUDY day, took extra Benicar and had the 1% grey/green wraparound Noirs under my 2% spectrashield amber. These were all factors that made it possible.
I have such wonderful memories shared with my family. I know without the MP this would never have been possible.
Remember, every time you think you can't do another Herx, think of the whole picture, and the future of a healthier way of life. I could even breathe in the hotel room!!!!!
April 07:
Very interesting, when walking the dog on Sat, the retractable leash came apart. I did not hook it properly. It was extended 16 ft and hit my ankle straight on with tremendous force. I DID NOT get black and blue! Before the MP, all you needed to do was touch my skin, and I would bruise.
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Lori: C.Lyme (undiagnosed 10 yrs, no success tx 4 yrs) MCS IC Asthma Reflux U.Colitis Osteoporosis Hypothyroid: 8/05: D25=21/D1,25=48--12/05: D25=14/D1,25=26--8/06: D25=9/D1,25=22-- 8/06: Alupent Levothriod PBX Vital 10/ BifidoLife Phase 1: 8/05, Phase 2: 11/30/05, Phase 3:
_____________________________________________
also MCS:
Barney: Multiple Functional IMPROVEMENTS
Sam MCS Insomnia
Sam MCS CFS IBS mini abx vacation was a very encouraging experience.
P.Bear R.N.: LYME: MCS: There is more than a light at the end of the tunnel...
PdeJager/ Peter: MCS CFS: I continue to see signs that I'm getting better
PdeJager/ Peter: MCS CFS improvements
ShrnHml / Sharon CFS MCS EBV MVP TMJ PCOS 28 yrs. Vast Improvements
CFS, MCS, Fibro. 6 months on MP. Katydid
Prugg21 Pam: MCS/CFS/FM 22+yrs: encouraging progress on the MP.
JohnP's progress: MCS resolution
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Aussie Barb
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Posted: Mon Sep 11th, 2006 13:30 |
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Paulette wrote: about Brad's experience of doing MP with CFS
Jan 24th, 2006: My husband has been on the full protocol for 1 year and 20 days, he started avoiding vit-d and light 2 months before that.
-He responded remarkably to the light avoidance and even more to the benicar. This is when we knew there was definately something to this. He has been unable to work for 8 years and sick for at least 12 years(probably more), with a diagnosis of CFS.
It is very hard at times to see the progress and at other times it is amazing. There are things he can do at times now that we wouldn't have dreamed of pre-MP.
Progress is slow and we tend to forget to notice the small steps towards recovery, but they are there. Herxing too hard can play on your psyche and let you know what you're made of. A support system is important. Brad at times has a very hard time distinguishing between herx and CFS. It is easier for me to see.
He has not been moving at a very fast pace, but we realize how long and how sick he has been and know that killing the bugs will take a long time. Sometimes it has been a few steps forward and many steps back.
There is a big learning curve with using the antibiotics. Reading the posts and listening to the moderators answers is the best solution. I read on the site every day and am constantly picking up pointers. I haven't posted for a while, but that is only because progress is slow and we feel we have a handle on things right now. We are very glad, however to know that help is just a post away.
Paulette
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Brad: CFS/FM 12years, Oct1/04-cut D-exp Oct25/04 Noirs Jan3/05 Benicar40mg Q6H Jan19-25mg mino July9/05 2nd abx 100mg voltaren Nov17/04 1,25D-33.5, 25D-16.4, D-ratio=2 July/05 25D-2.5ng/ml
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Aussie Barb
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Posted: Mon Sep 11th, 2006 13:32 |
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Ival wrote: RA: I've got my life back
Jan 25th, 2006: The last of Phase 2 has been very well tolerated I can just about work through every hex. The third day and the fifth day are the hardest but still manageable every symptom that I'm having is now dose related. The only joints that have given me any trouble in the last month have been my hips and my toes. I have been doing so good that I decided to go on vacation last week. Everything that me and my family have been through in the last seven months I just needed to get out of the house for a while and I felt like now's a good time before I started phase three.
So I talked one of my friends into going to Phoenix to the Barrett Jackson automobile auction for four days it was great. He knew going in that if I got sick he may be on his own and have to just leave me in the room but I made it fine. We got there early enough to go to Apache trail and tortilla flats on the first day. On the second day we went to Barrett Jackson we also went to two other car shows. The next day we made a speed run to the grand canyon, Montezuma's castle, Sedona, and the painted desert. We put almost a thousand miles on the rental car in four days. Saturday morning I went to the IndyCar museum and finished the afternoon off with lunch and sightseeing of Phoenix with a friend.
Sunday was the hardest day we went out to Phoenix international raceway to the copper world classic. I started out sitting in the shade but it was so cold and windy that I made the mistake of moving out in the sun from ten to noon. I was covered up pretty good really the only skin that was exposed was my head for under my hat but I guess that and all the other sun exposure that I've been having was enough that when I took my noon benicar I had a major sun flair. I had major brain fog for about two or three hours and then it settled down to by 6:00 I was fine but it was exactly like when I started the protocol.
Not bad for somebody that was told three and a half years ago by their rheumatologist that if they did not get on methotrexate and embel that they would be in a wheelchair in three to five years. Once I have made it halfway through the second phase it has just been amazing at how much better I've been doing my chronic fatigue is almost gone when I take the antibiotics it has almost been nonexistent. I sure wish I knew why I've been able to progress so fast I wonder if it's I caught my disease early or by not taking any of the immune supprescents it has helped in my fast recovery. Or maybe it is because I had low D levels to start but for whatever reason I sure am glad. There's no way from what I've been witnessing I feel sure I will make a full recovery.
I've got my life back. Ival
Oct, 06:
-Diet made a big difference in my RA at the beginning of the protocol.
-Volume was important also I did a lot better if I ate small portions all day instead of one or two large meals.
-Things I could eat changed a lot to for some reason most of the time fresh vegetables and salads were fine
-but I had a period where I had to steam everything.
-I went through a period where if I ate a cucumber I would be in bed for a couple days. I think that was the strangest thing that would bring on the RA.
It does get better though I can eat just about anything now and have no symptoms.
Changing the antibiotic dose very slowly would help to keep the big swings of symptoms down most of the time. I always did better doing that than changing them a lot it was still a roller-coaster ride but at least you could see where you were heading.
November 06:
I feel like my brain is being rewired. I haven’t lost any intelligence but I’ve gained so much more room in my brain that it becomes hard to sort it all out at times. As soon as all the pathogens are killed I will be better than ever. Understanding what is going on always makes me feel better.
also:
Ival: RA: Here is my little speech I gave at the Los Angeles conference
Ival: RA improvements..8 months ... 1 year....
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Ival: RA: diag/ RA/2001/ Male/ 46/ Started MP 4/12/05/ Benicar/Q6h/ 4/26/05/mino100/Q48h 25-D 13ng/ml/ 125-D44pg/ml/ Ph2/ june1 Probiotics
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Aussie Barb
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Posted: Mon Sep 11th, 2006 13:35 |
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Grace wrote: re CFS Muscle wasting: Muscles regained and healing.
Jan 27th, 2006: Phase 2 161 days
My muscles and flesh all around them were stringy, like one of those roasts that when cooked falls apart in strings.....
-I am thrilled, as is family, as I can't stop showing them my calf muscles.
-I also have regain muscles in arms. The thighs still have away to go, but I can feel the healing taking place there.
-I don't shuffle when walking.
-I can roll my foot and push off from my toes.
-I can walk further, Faster and stand longer . I still get pain in these muscle with any exertion.
Years ago when I had fish, the pain was unbearable in these muscles so I KNEW fish made it worst. No one could explain why until I discovered MP-thanks Trevor
Add Mar 14th 06: I have past my first MP birthday. I often thought about what level of healing I could be at on my first MP birthday. Of course we all wish things to heal faster, but I am still very happy with my progress.
My Doc has fancy scales to measure fat/muscle ratio, so for scientific purposes only, I allowed myself to be weighed. My muscle ratio continues to increase. I have not lost weight nor do I exercise. The increase in muscles has allowed me greater strength in regards to standing and walking. Daughter 2 said I was 'running' with her at the shops Most nights I still have to take panadol (tylenol) to go to sleep, because of the pain in legs.
9th August 2006
My muscles are getting firmer and more normal all the time. Started at the toes and now the top of me hips are herxing-real strange. I notice I am swinging my legs more from my hips now, a great improvement of my per MP shuffle.
January 2007:
The latest muscle improvement has been the top of my neck. At the worse of CFS I could have worn neck brace when been driven, as when my DH drove I couldn't support my head properly with his braking and accelerating. As he gets better I am sure his driving will too, as mine has.
I know what it's like looking at loss muscle  . My muscles now just keep getting better. I even had a arm wrestle the other night , something I would have been to weak to even contemplate. My fingers keep getting stronger.
I had been doing knitting since I become ill, as it was the only thing I was able to do. Often I was too ill to do this. So you may want to think about a activity that you may feel like doing. The muscles I first felt I was able to use, were the first ones to improve.
'old science' says "exercise your muscles and they will improve". With MP I found it to be the other way round as your muscles get better then you can do/'exercise'
see further
Grace: Now - I never lay on the couch or recline: March 07
Grace improvements
GRACE being able to do things..
Grace All the things I can do
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Grace: CFS 5 yrs+: oct04 25D=26 1,25D=48 feb05D=22 1,25D=52 Jun05D=9 NoIR samitriptyline/ MP Feb05 Beni Q6H/ Mino15MAR/100mg Mino QOD/Phase 2 7JULY. Phase 3
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Aussie Barb
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Posted: Mon Sep 11th, 2006 13:37 |
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Chubby Chicken wrote: Borrelia: Herxing in atrophied sites. Decrease in inflammatory pain.
Jan 27th, 2006: I have also experienced muscles wasting. In fact, my muscle atrophy in my scapular region was what prompted me to pursue medical help in the first place, eventually leading to my positive diagnosis for Borrelia and Rickettsia.
I will be taking my first dose of 100mg mino today and so far virtually all of my "herxing" has taken place at the atrophied sites in the form of sharp pain and tingling sensations. Though there is no apparent mass increase as of yet I do notice a strong decrease in "inflammatory pain" when putting pressure on my shoulder joints (ex: by pushing open a door with resistance).
CC
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Chubby Chicken: Borrelia, Suprascapular denervation, Phase-1 Dec 9/05, Olmesartan-TR 40mg Q6H, Minocycline 75mg QOD and avoiding dietary D and sun, 04/05:Vit-D:60/40ng/mL
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Aussie Barb
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Posted: Mon Sep 11th, 2006 13:47 |
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Jeanne wrote: Crohn's: no meds required 8 months. Energy etc.. 1 year - List of improvements.
Jan 28th, 2006: Just wanted to write an update on how I am doing. I have not had to use any meds for Crohns since May 05 and I have no noticable symptoms. This is really rather miraculous.
I got a virus that was going around and was horribly ill for three weeks, but most of my friends were ill longer. It used to be me that would have a terrible time trying to recover, especially from something like this virus which attacked my respiratory system. However, I recovered in what I felt was record time and am now back to where I was before I become ill. Which is to say with more energy than I could imagine. this time a year ago I just had trouble trying to get up, shower, eat and do small necessary things for myself. Now I actually look forward to having to run some errands as I have the energy to run them.
-My cough is basically gone, just a little here and there.
-The liver pain is almost totally gone and the spleen pain is gone.
-I am not the person I was before becoming ill, but I am certainly closer to becoming that person than I have been in a number of years.
-I actually feel well enough that I have made plans for April. A first, Up until just recently I never even made plans a week in advance as I never managed to keep them.
-Now I am planning on a 12-hour drive from Seattle to California to attend a wedding.
If this continues, I may even be back to work soon. How can I possibly thank you all and particularly you Dr. Marshall? I suppose the best I can do is to keep spreading the word to all who will listen.
Thank you more than I can express.
May 6th, 2006: noting improvements in a year.
I thought this might be a good time to do an update on my condition.
Since starting the MP a year ago here is where I currently am:
-my chronic cough is gone.
-My crohns disease symtoms are basically gone.
-So far this year I have not developed any new erythema nodosums.
-I often have stamina and can do things I could not do a year ago.
-Overall I feel better.
-My head is clearer and
-my memory has improved dramatically.
-for the first time in three years, I am taking walks again. Three days in a row I have walked for a mile and could have done more had my yorkie been more agreeable, but she pooped out and she weighs ten pounds, so I had to carry her.
-I can't even tell you what a difference this is from this time last year when going from the house to the car had me in a coughing fit. Now I don't cough, at all!!!
-I even painted my mothers door, again, a feat that could not have been done in the past three years or more.
I am very grateful for this research and having the opportunity to be part of it. I am so grateful for the MP that I am way beyond words.
Jeanne
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Jeanne: Sarc, crohns, cf, fm, thalassemia, Phase One MP started 4/9/05 40 mg benicarQ6H.100mg minocycline . No D tests. sulfasalazine stopped, 2 thyroid meds, noIRs worn always, avoid light.Phase 2 started November 7, 2005, Phase 3.
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Aussie Barb
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Posted: Mon Sep 11th, 2006 13:49 |
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Carole wrote: Edema resolved and Muscle strength and tone return.
Jan 29th, 2006: The good news is, as I soon celebrate my two-year anniversary on the MP, the overall edema throughout my body has nearly disappeared, and the muscle strength and tone have returned.
see also:
Carole: MY MP Story
Carole Living Proof of MP
Carole: celebrating my most recent test and CT scan results
Carole: History and Improvements...
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Carole: PWC 50+ yrs; 20+: CFS, FM, Pituitary, Thyroid, IBS, Cardiac, OA, Migraines; +ANA; Osteoporosis; 2/04 Mediastinoscopy~Sarc; Resolved Chest CT
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Aussie Barb
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Posted: Mon Sep 11th, 2006 13:51 |
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Carol wrote: RA: I’m having great success with a new medical treatment for rheumatoid arthritis.
Feb 3rd, 2006: I’m having great success with a new medical treatment for rheumatoid arthritis. It’s called the Marshall Protocol and it is curative therapy, not just something that addresses the symptoms of autoimmune disease. The science has been reported in several major medical publications and there is an excellent website that provides support to patients and physicians. http://www.marshallprotocol.com
Carol
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Rheumatoid arthritis dx '96, started MP 8/11/04 Initial D tests (7/11/04): 25-D 32; 1,25-D 65 Topical E1E2E3/P, Vicodin, Celebrex/ Phase 2 started 12/6/04; It took a year to get my 25D down in the teens!
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Aussie Barb
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Posted: Mon Sep 11th, 2006 13:55 |
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Gary wrote: Sarcoidosis: Phase 3 Progress.
Feb 7th, 2006: Things are going reasonably well for me. I have been through phase 1 and 2, and now in Phase 3.
-Compared to 6 months and especially a year ago, I am doing quite well.
-Nearly all of the "feeling drugged" fatigue is gone even when herxing.
-Going to work is no longer a major psychological barrier, and I am enjoying work.
-I find myself laughing more, singing and whistling (when no one can hear), -and I have a little bounce to my step.
-Life is no longer a chore that must be completed because others are depending on me.... its back to being something to enjoy.
-At times I feel like I want to exercise, but that only lasts until my next herx day. I've decided that I need to be healthy before I work on becoming fit, so joining the health club can wait another year or so.
- I have maintained a weight of 160 for nearly a year since being on the MP which is close enough to ideal for me at 5' 8". It sure beats the 205 when I was sick.
I see my doc in 2 days... all I need is refills. I haven't seen her in about 7 months, which is a record since I was first diagnosed.
Thanks to Barb, Meg, Belinda, Lottie, and any other moderators I've forgotten, and to Dr. Marshall for everything that all of you do.
Oct, 2006:
All increases in immune response are no problem .. a couple years ago I would have loved only having symptoms this "bad". I still have adequate energy for work even with the increased sleepiness.
March 2007:
Energy continues to increase - if something needs done I just do it.
Gary eyesight improvement
Gary functioning and productive, mentally and physically.
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Gary: dx Sarc 4/00- lymph biopsy. Neuro, lymph, eyes, fatigue, liver, kidney. Benicar 5/04. Mino 6/04, PH2 8/04, PH3 12/04. Sig herx Few non-herx symptoms except stuffy nose.
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Aussie Barb
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Posted: Mon Sep 11th, 2006 13:59 |
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RobertTownsend wrote: CFS: Overall progress is great
Health Professional
Feb 12th, 2006:
- my wheelchair has been sold and
-I have started riding my racing bike ( although unfortunately only at night, and so far only for short distances_
Thanks for all of the MP teams help and support
Oct 06 -daytime fatigue almost all gone, eye sensitivity much less,
November 2006:
-Tomorrow is my first anniversary of starting Benicar !!!
- and next week it will be seven months since I sold my wheelchair
-My eyes improved and reading became much easier. I became able to drive out at nighttime.
Robert Townsend
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RobertTownsend: CFS 4 yrs,crippled knees ,Oct 05 1,25D 90 pMol/L,25D 38 nMol/K; Phase 1 Nov 05,walking freely Jan 06; Phase 2 Feb 06, March 06 1,25D 61 pMol/L, 25D 23 nMol/K ; Phase 3 commenced end July and CFS symptoms almost all gone, but still the herxing !
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Aussie Barb
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Posted: Mon Sep 11th, 2006 14:02 |
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KFaucher: Ken: CFS 20 years: I am still only halfway through phase 2, makes me wonder how much better I can get.
Feb 14th, 2006: I’ve been thinking about this all day, and chuckling about it. It is amazing how viewpoints and expectations can change with time. If I had gone through a six week course of abx and come out feeling as good as I do now, I would have been saying I was in full remission, damn near a miracle. Now, after 14 months of MP, I realize just how far I still have to go. Sometimes it is too easy to look ahead to a goal and forget to pay attention to where you are.
When off abx and not herxing: brain fog is gone!!; I have energy; sleep is easy and refreshing; GI tract is working properly; attitude is good, sense of humor returned; I get things done, all those little projects that would normally get put off.
I am still very much out of shape. Muscles have little tone. But my wind is good. I have one of those elliptical trainers and have not been able to use it much. Pre-MP I would go for about 2 minutes, my pulse would dramatically increase, respiration would be ragged, gulping breaths and I would get very dizzy. Today I hopped on for the first time in probable a year and a half. I stopped after 4 minutes because my legs were burning, but my pulse barely increased and breath was easy, deep, through the nose. I felt like, cardiovascularly, I could have gone a long time. And no after effects. Unbelievable! Even throughout phase one this would not have been possible.
Ken
p.s. I am still only halfway through phase 2, makes me wonder how much better I can get.
"Maybe it's all too simple / For our brains to figure it out / What if the hokey pokey / Is all it really is about" Jimmy Buffett, Mac McAnally, C. Macak, T. Baker, L. Laprise
see also
Ken Faucher: Phase 3 update - 2 year progress
KFaucher/ Ken: CFS: camping trip
KFaucher: CFS: the MP does work! 6 months on the Marshall Protocol!!!!
KFaucher: CFS: CWD and back pain
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Ken: CFS 20 years "good days & bad days & going half mad days" J.B.
25D=30 1,25D=57 8/2/04; 25D=19 1,25D=48 12/2/04; Avoid Sun 9/12/04, NoIR 10/1/04; Benicar 12/2/04, phase 1 12/10/04, phase 2 4/5/05
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Aussie Barb
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Posted: Mon Sep 11th, 2006 14:08 |
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Lonestartick wrote: Late-stage Lyme patient with co-infections - MP is the only treatment that has ever handled all of my infections.
Feb 21st, 2006: I am a late-stage Lyme patient with co-infections. It was decades before I was properly diagnosed and treated. I have been around the block when it comes to treating Lyme and co-infections by the LLMD approved methods. I have done cholestyramine (Questran) with ABX treatment. As a matter of fact, I was one of the early Lyme pioneers with Dr. Shoe's neurotoxin therapy.
I recall that it took months for it to help me. Even then, the help was minimal - nothing compared to the MP. Actually, I was in my 3rd box before I noticed any improvement at all. Cholestyramine is not without its own side effects and risks, such as vitamin deficiency as a result of its ability to bind everything. Recently I have begun to wonder whether or not its limited effect was perhaps a result of it interfering with the absorption dietary D. That makes more sense to me now in light of my experiences on the MP.
Prior to the MP, I was considered a treatment failure after 17 months of IV ABX followed by years of oral combinations that included a variety of ABX, flagyl, tinidazole, Mepron and diflucan. I can tell you, I wasted much time and vast amounts of money before I found the MP. This is the real deal and you don't really need to augment it with anything. Under no circumstances would I try combining it with cholestyramine. Based on my personal experience with both therapies used separately, it is not something I would ever be comfortable doing.
The MP is not a quick fix, but it really does work just as predicted. It is the only treatment that has ever handled all of my infections. (Lab confirmed: Borrelia, Babesia, Bartonella, mycoplasma, Candida, HHV-6 and EBV.) Prior to this protocol, I bought into the idea of a “carousel of tick-borne infections”, because it seemed that once I knocked one down, another popped up in its place. All of those positive tests and diagnoses I had bought into in the past are finally a thing of the past. These days, I am the proud owner of a fully functioning immune system and it is handling everything quite nicely.
At this point, I am in my 19th month on the protocol and I am in phase 3. I have been pretty remiss about posting progress because I am busy enjoying a level of health that I never before could have imagined. The MP meds and lifestyle have made this possible. Having been the LLMD route from 2000-2004, I can assure that they have nothing on TM and the MP. Unfortunately, it seems that our LLMDs are too lost in a quagmire of brain-fogged patients who are seeking quick fixes to recognize the full potential of this discovery.
Wishing you every success on your MP journey.
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F age 41 Began MP 7-26-04 Dx: neuro-borreliosis (chronic late-stage Lyme disease) conf by several labs, with co-infections (Bartonella, mycoplasma, Babesia); 6 yrs prior abx (17mo IV) Meds: Thyroid, 40mgBeni qid, Phase 3
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Aussie Barb
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Posted: Mon Sep 11th, 2006 14:10 |
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jrfoutin wrote: Generally more energy for longer periods of time in my energy budget.
Feb 22nd, 2006: Monday did 2 quick runs to store, movie with guys, out to dinner with extended family and then I drove a long evening freeway errand to drop off something in another city. That was after doing a full computer day.
You might say, "these are mostly sitting activities," until you take into account the hustle and bustle of coming and going places that required walking quickly and lots of up and down. This kind of day would have slayed me 6 months ago and I certainly wouldn't have had the mental clarity to carry on a conversation with my mother (she came along while I drove long distance at the end of day) without losing my train of thought or emotional composure. I also wasn't zonked or incapable of working the next day (yesterday), which was also a pleasant surprise!
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Dec99:Sarc lung, Sep00:Weaned Pred, Mar05:No D/light;+NoIRs, 8/09:125D=61|25D=12;Beni40Q8H, 8/18:Beni40Q6H, 8/23:M25, 8/31:M50, 9/14:M75, 9/15:Beni40Q8H, 9/26:M100, 10/6:ModPII, 12/31-PII
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Aussie Barb
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Posted: Mon Sep 11th, 2006 14:12 |
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lane wrote:
Feb 24th, 2006: GOOD NEWS, GOOD NEWS: I received the results of my ct scan. For the first time in three years.
Old results: my chest scan results were, calcified right hilar lymph nodes, lateral pleural thickening, scattered linear opacities, discord atelectasis and linear scarring.
NEW SCAN: minimal scarring, no other abnormality identified.
Thank God, I knew that I was feeling better, but in the last couple of weeks I felt different. I still rest as much as possible but life is good.
Please keep up the good work of saving lives.
Lane
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sarc dx. 1980 w/ biopsy lungs, body pain, fatigue. started mp june 04 now at phase3, 6/04 d,25- 39, 1,25-d 54. wear noirs, light sensitive
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Aussie Barb
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Posted: Mon Sep 11th, 2006 14:14 |
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ElizaH wrote: Healing Progress in Eyes, Shoulder, of old Emotional hurts.
Mar 5th, 2006: I have reassessed what is a herx and now count anything that can be attributed to unflammation: pain, extra sleep requirement, increased disability, brain fog, increased muck in nose and throat + breathing difficulties, emotional, blood test results, and a whole host of other things. Initially I thought it was just pain = extra sleep requirements.
I saw the eye specialist last week and after 7 years have dropped the antiglaucoma medication (Alphagan) and halved the anti inflammatory drops (Flarex). I see him again on 4 April when we expect to discontinue the Flarex. That is progress.
Some time ago I reported muscles relaxing in an old shoulder injury. I have had a couple of prolonged sessions of muscle twitching associated with the same injury which, because of my experience with acupuncture, I interpret as further healing. The shoulder was part and parcel of subsequent occupational overuse syndrome and other symptoms of OOS have appeared intermittently. Inflammation is part of OOS so could it be that this syndrome itself was an indication of Th1 inflammatory disease predating my dx sarcoidosis by about 9 years?
Another curious and unexpected effect of being on the protocol is the healing of old emotional hurts. My mother had Parkinsons disease for the last 3 or 4 years of her life and required full time care for the last two. She was in Melbourne and I was only able to see her about 4 times a year. Her facial muscles were seriously affected and, like me, her face could be quite forbidding in repose. Staff at the nursing home woulld assure me how delighted she was at the prospect of my coming down but to me she just looked as if I were a dirty smell under her nose. This, coupled with her loss of independence, I found very hard to take and was not able to come to terms with it after her death. It has been parked in the 'too hard basket' for 14 years but lately I have been able to reexamine it and find that I am starting to see beyond the fog of those final two years and rediscover the mother I knew and loved. I have even revisited and older and deeper emotional hurt and there are signs that even this may heal. This gives even more significance to 'healing beyond one's wildest imaginings' on the MP.
I think I will be ready for phase 2 in about two weeks.
All the best
ElizaH
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Fatigue/nausea/vision/skin late98 Uveitis + Glaucoma, dx Sarcoidosis 3/99, breathing difficulties 5/05: NOIRS 3/05: Flarex eyes, Somac: 15Mar05 1,25D=80.76, 25D=13.2: Votum 40mg q6h 24Nov05 Mino 25 mg 18Dec05 50 mg 9Jan06 75 mg 6Feb06 100mg 28Feb06
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Aussie Barb
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Posted: Mon Sep 11th, 2006 14:18 |
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pdejager: MCS CFS: I continue to see signs that I'm getting better:
Mar 7th, 2006: I have been very selfish, and have not posted for more than 3 weeks. I apologise, and hope to do better during the next cycle. I've been tied up with work, ... I had to drive, in daylight, for 4.5 hours each day,...
-That I can now do this is truly remarkable: yes, I hurt quite a bit for a day or so, but months ago I would not have been able to drive for more than 2 hours at a time, and would have needed a week to recover. It doesn't mean that I'm going to do this every weekend (far from it!) but just knowing that I can do so if I must has greatly boosted my confidence.
I continue to see signs that I'm getting better:
-muscle strength and mass is increasing, even though I do little exercise and don't "work out",
-I no longer get bloody spots when I blow my nose,
-the average size of glands in my neck keeps decreasing,
-I seem to be getting lots more done (I'm catching up with home maintenance after 15 years of benign neglect!),
-I can think more clearly and don't avoid making decisions...
Still cruising...
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Peter: MCS/CFS (1990)1,25-D/25-D 01Jul05: 38/28. 25-D 27Oct05: 16. Benicar started 27Aug05. Mino started 12Sep05. Started Phase 2 01Nov05. Started Phase 3 25Jul05.
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Aussie Barb
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Posted: Mon Sep 11th, 2006 14:21 |
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alayne: CFIDS FM: noting improvements.
Mar 15th, 2006: good news - my parents, with whom I speak and write to often, have noticed some big improvement. I quote them entirely without their permission here:
Dad: “We've noticed a significant improvement in memory, mental processing (ability and speed), reading comprehension, articulation, spelling, grammar, etc. I'm sure you're as pleased as we are with this progress.”
Mom: “We’ve heard and seen such a wonderful difference in your voice and e-mail writing… It has been a huge relief for us to hear you speaking and writing more like your old self again." (Granted, they've not seen my rambling posts here, so their judgement may be a little skewed. )
Then they asked me to contact an acquaintance of theirs who has CFS and tell him about the MP. What a good feeling.
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Alayne: CFIDS/FM 6/05:25D-34, 1,25D-69 12/05:25D-22 1,25D-44 Sick 6-11 mos/yr for 20+yrs. Sleep dysf (Xyrem), Neuro probs, Pos for EBV, CMV, C Pneu, Myco Pneu. Body totally fell apart 2005. NoIRs, 9/28/05-Avoid Sun/D, 11/17-Beni, 12/02/06-Ph1, 5/8-Mod Ph2
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Aussie Barb
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Posted: Mon Sep 11th, 2006 14:34 |
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Carole wrote: MY MP Story. Being on the Marshall Protocol has given me symptom resolution and a very tolerable life. My family and I are elated about my overall progress.
Mar 18th, 2006: I have been fortunate and am thankful to have been able to work non-stop (except for surgeries) throughout my 34-year career. Of course, the school year consists of 185 working days; but, nevertheless, the demands and responsibilities go far beyond the regular workday.
For over thirty years I have been treated for chronic infections, debilitating pain and symptoms from head to toe, and multi-systemic maladies, with regular visits to specialists and therapists throughout the Midwest. Chronic fatigue, fibromyalgia, osteoarthritis, stress, etc., were among the diagnosed culprits.
Being on the Marshall Protocol is very challenging, but has given me "symptom resolution" and a very tolerable life.
I no longer have "prolonged" issues with my muscles, joints, bones, heart, lungs, spine, vision (blurred, distorted, or loss of), senses (smell, taste, hearing), sinuses, stomach, bowel, bladder, rashes, nasal sores, loss of hair, sensitive teeth, swollen lymph nodes and spleen, fatigue, blood pressure, fingernails breaking above the cuticle, edema, swallowing, insomnia, stamina, strength, and thought processes.
Occasional herx-related headaches (or from too much light) have replaced excrutiating migraines, and most other herx reactions have been short-lived. My thyroid levels continue to improve, as well as all of my bloodwork. Also, the chest scans present normal nodes and lungs. I have been on the protocol since 2/04.
My family and I are elated about my overall progress, but I admit that the journey on the protocol might have been easier and faster if I would have adhered more diligently to the light issues. I'm still very dependent on the 4-6 hour Benicar dose and the Noirs for daylight driving.
I am "living" proof that the protocol is the only answer to being a Th1 survivor! I am forever indebted to Trevor and the MP!
Wishing you the best . . . Carole
Interview with Carole Morgan - sarcoidosis, fibromyalgia, CFS
Carole Living Proof of MP
Carole: Edema resolved and Muscle strength and tone return.
Carole: celebrating my most recent test and CT scan results
Carole: History and Improvements..
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Carole: PWC 50+ yrs; 20+: CFS, FM, Pituitary, Thyroid, IBS, Cardiac, OA, Migraines; +ANA; Osteoporosis; 2/04 Mediastinoscopy~Sarc; (1/04,7/04,1/05,7/05,1/06)1,25: 85(wks w/no D), 50,25,40,34; 25-D: 41,33.48,22.56,20.48,14.4; ACE: 68,45,37,43,43; Resolved Chest CT
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Aussie Barb
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Posted: Mon Sep 11th, 2006 14:37 |
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Julia wrote: If I hadn't done MP.....
Mar 30th, 2006: If I hadn't done pre-MP light and vit D restriction, my kidneys would have packed up (so my endocrinologist said). I would be unable to sleep for insomnia, thirst, cramps and sweats.
If I hadn't done Phase 1, my eyes would have continued to deteriorate and I would have been unable to see enough to drive or work. But then I would have been too fatigued to work anyway.
If I hadn't done Phase 2, I would have agonising cramps, shooting nerve pains, 'tennis' elbow, pains in limbs, tinnitus, and a disabling cough when I talked.
If I hadn't done Phase 3, I would be waking with severe pins and needles (carpal tunnel syndrome), sneezing my way through the hay fever season as usual, sneezing for hours after changing the beds (if I had the energy to change the beds), waking to use the bathroom in the night, suffering from nose-bleeds, swollen glands, tooth pains and morning snuffles.
Any regrets? None. Any bad points? Herx. But herx only brings out what's there. If it's something you didn't know you had, you would find out about it in due time if you let the disease run its course, so you would get it anyway. You don't escape it by not doing the MP.
Doubts? Some, especially early on. It's only natural, when a treatment is new and relatively untested. But what's our choice? Let the disease run its course? Buy a wheelchair, a coffin and shares in an oxygen company. Let Prednisone run its course, with all its side-effects? No thanks.
February 2007:
I'm far on with the MP, and still bothered sometimes with RLS. BUT... when I took a few weeks' break from the MP last July, one of the most noticeable things was the total absence of RLS. It was such a relief! Now I know that the MP is dealing with it, and one day I'll be completely free
March 2007:
I used to rub lashings of moisturiser into my dry feet and deeply cracked heels after every shower to make life tolerable. Now the problem has gone . Isn't it amazing what happens on the MP?
The agony of carpal tunnel syndrome night after night, that I had pre-MP. That's gone
 Julia aka Happy Camper 
see more:
Julia: re OCD
Julia: Twenty months on, steadily getting better
Julia:
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Sarcoidosis dx 4/03, uveitis, hypercalcaemia. No Pred. MP via GP. Light/D restriction 8/03; Mino 2/04; +Benicar from 5/04. PhaseII 8/04, PhaseIII 11/04. Quercetin as needed. Brewers’ yeast. Benicar 40mg q5-8hrs. 25D 12/05: 8.8
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Aussie Barb
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Posted: Mon Sep 11th, 2006 14:39 |
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Debbie y wrote: My life is important to me and I want to live to be an old woman.
Mar 31st, 2006: I started my MP on Feb 2 after doing alot of reading, researching and attending the Chicago conference.
I, too, have lung and skin sarc and was treated at the Mayo Clinic. Prednisone was the treatment and yes, the sxs abated. But, the prednisone affected my joints, ruined the excellent diabetic control that I had had, affected me mentally, and caused me alot of pain. And, when the drs. at Mayo reduced my prednisone dose, the symptoms returned. It took me a long time to get off of it completely but I finally did. And, guess what, the sarcoid symptoms returned within 6 weeks. They tried me on Plaquenil and it had no effect on it either. I am a nurse and decided that I was not going to go on the other drugs like Methotrexate, etc. because of the very harmful side effects.
So, I decided that the MP was the way to go, especially after meeting Dr. Marshall and his team.
You must be committed to doing the MP. As you know, this site is FULL of information. If you do not commit yourself to doing the protocol as is, you will not reap the benefits and have nothing but disappointments. I am halfway through phase I and already, I have more energy, I look better, my lungs remain clear, I have not had any more progression of the rash other than 3 spots which this time, disappeared within 3 days. My diabetes is good, sleep is good, heart is good. And I smile, and I feel hopeful.
My life is important to me and I want to live to be an old woman. If I had stayed on prednisone, that would not happen. Like I said, I am a nurse, I have seen the devasting effects of prednisone. The drs I have told me to GO FOR IT, because they know that prednisone, etc. is NOT the answer.
June 2006:
I have a Dupuytren's contracture on my index finger. One amazing thing I noticed after my FIRST dose of the new med is that the pain was almost completely gone and my finger which is normally bent, was able to be straightend out completely. My husband and I stared at this finger for almost 20 minutes before we turned the lights off to go to sleep! I could bend and straighten it without any problem. I could not straighten it out at all before. This finger has been like this since last year and before the MP was started. I am now fascinated and may be able to cancel the surgeon's appt. and just give this more time as I have just begun Phase 2. The mino did not affect it, it was after I added the the next antibiotic. This protocol continues to amaze me!
May 2008:
I have had a history of Dupuytren's contracture. In fact, I have a very long history of trigger finger problems from diabetes, Dequervain's and carpal tunnel.
I am now in phase 3 and have been on MP for 2.5 years. I did have 1 prednisone shot in my finger but that was a very long time ago. As I have progressed on MP I have no pain in my finger anymore and it is totally functional. No stiffness either. Even my erythema in my palms has dramatically improved.
It is easier to be further along on MP and look back. You realize that if you are patient, things will go away, it REALLY is true. I avoided any more surgeries. Even my old scars from previous surgeries did some funny things earlier in ph 2 but again, all of it has gone. And did not last long. Keep getting things monitored but from what I've been through, carefully waiting and watching prevented me from a whole lot of misery. Good luck!
debbie y.
see also DebbieY 44 years of Diabetes
debbie y ready for ph 3
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Debbie Y: Ph1=2/2/06 SARC lungs,skin,3/04, D.M.1 -insulin pump, celiac sprue, IgA deficient, thyroid, MVP, 2/06 25D, less than 7, 1,25-29, ACE still high. Wearing NOIRS Beni 40mg q8h mino 50mg qod
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