 |
| Author | Post |
|---|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 381 |
| Status: |
Offline
|
|
Posted: Wed Apr 9th, 2008 17:23 |
|
Updates:
Scooker48 / Sherry Sarcoidosis: documenting healing on the MP
Lightomni Aspergers & Chronic Fatigue
Julia: Four years on the MP: discussing cure. see also Chris and Robert below.
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 381 |
| Status: |
Offline
|
|
Posted: Thu Apr 10th, 2008 04:07 |
|
Q: So are you completely cured from sarcoidosis? Do you have any sarc related symptoms anymore?
Chris
Member in Phase 3
 Reply:
We have to be careful about the language here, as some medical terms are going to change with acceptance of the Marshall Pathenogenisis.
The doctors who diagnosed my sarcoid at Robert Wood Johnson only looked at a few of my problems as sarcoid related: the fevers, and severe leg pains. The rest of the trouble, from irritable bowel to retinopathy to diabetes were either considered to be totally separate or prednisone related.
The immediate goal when I started the MP was to not die before I got my kids through college. Then, it was to be able go to the last graduation -- missed that, but made the Masters Degree graduation.
The next goal is to be able to do the things I could not do when pinned down by sarcoid. If that requires a long term medication, I'd prefer one that works, rather than something like Vitorin, which does not.
MP is certainly (in my experience) a lot safer and more effective than those flu vaccines I've been avoiding.
I know that all the problems were TH1, whether called sarcoid or not. As far as RWJ is concerned, I'd be cured. As far as I am concerned, I'm not. I've had four medically impossible or improbable cures already - PSA normal without intervention (other than MP), no more sarcoid fevers or pains, no diabetes, and eye trouble stopped. That's ingoring all the subjective things like back pains, depression, mental fog, energy levels and so on.
When things stop getting better, I'll stop the MP. But not until then (God and the government willing.)
This is still in clinical study form. You do have the option of waiting until Doctor Sharma accepts the MP (or hell freezes over) to do this, or the FDA puts it into some list or another of accepted medical practice.
Your choices are:
1. prednisone/methotrexate/remicade forever on a down slope.
2. MP (maybe forever) on an up slope.
3. try alternative therapies ...
4. wait for the MP study final result, and it's promotion by the FDA.
Maybe nobody ever gets off the MP. I can live with that, as all the other choices are in the down slope group. The MP is the only one with a solid record of success.
The reaction I'm getting from the max dose of antibiotics tapered off, and the underlying problem went away. The reaction I got from prednisone tapered off, and the underlying problem was worse and I had to up the prednisone.
If you can't accept the risk of joining a clinical study, then the MP maybe isn't for you right now. Waiting for a final understanding of the MP by the FDA, acceptance of the MP by all and sundry, is a choice. It's not one that was going to be timely enough for me. You are going to have to decide for yourself.
The final note I'd like to say is that there is a huge range between the results of prednisone therapy and a 'miracle cure' (like a few weeks of penicillin for acute syphillis). I would not let the perfect get in the way of the pretty-damn-good MP.
Chris~
Robertrr
Member in Phase 3
 reply:
I doubt if anyone here is going to be able to give you the answer you want to hear. In my case, as described by Julia and Chris, (above), the doctors who diagnosed me with Sarcoidosis would most likely tell me now that I'm currently "cured" or in "remission" or ?? etc. by their narrow view of Sarcoidosis as a TH1 illness.
The symptoms I had when I was diagnosed as Sarc have disappeared for the most part. Any others I occasionally suffer would be easily explained due to other causes.
Now that I know where to "dig", I still can find some slightly enlarged throat lymph lumps but my new Physician told me today that they are well within guidelines for "normal" vs enlarged and he would not consider them enlarged any longer.
However, as I went down the road on the MP, I discovered there are many other TH1 symptoms never related to Sarc (just normal aging is what I thought) that I now want "gone" too. Some have "gone", including brain fog (gone :-)), parasthesia (gone), hip and shoulder pain (better but not totally gone), joint pain (gone), fatigue (much better...able to exercise quite a bit and am actually starting to get a semblence of fitness), etc. One that isn't improved is tinnitus. Although any "regular" doctor could no longer make a sarc diagnosis if he saw me today (for a physical, etc.), I'm know I was "aging" faster than normal for at least several years before I got on the MP ......I want ALL the time back :-). I think I'm going to get it too..time will tell.
You'll have to decide for yourself. Until you try it, you will not know how much you'll have to alter your lifestyle (maybe very little).
I know we've all been brought up in this modern world where we want to go to the doctor, be given 2 "pills" and be "cured". The problem with these th1 disease tho, is that these bacteria built up over a lifetime and killing them that fast would probably kill the host (and be called an allergic reaction vs what it really is, a IP reaction). So, if you decide to do this, recognize that you're probably going to WANT to be on the MP for a long period of time. The issues with antibiotics and long term use is really not something you should have to worry about. But you should really read the papers on the main site about all of that.
So, you'll have to decide what you want to do. No one can "prove" to you that you should be on this protocol. You're not going to get anyone to jump in and say they're cured...for the reasons above (we all want to continue getting better).
I don't know of any other protocol that offers as much as the MP and perhaps if you decide to think of "cure" the way Julia's described in the link above (ALTER vs CURE), it might help with any semantics you may be struggling with.
Good luck on whatever you decide,
Robert ~
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 381 |
| Status: |
Offline
|
|
Posted: Thu Apr 17th, 2008 07:14 |
|
davbrkr
Member in Phase 2
 My list of symptoms now has several “zeros”.
Pre MP: After 5 ½ months on oral antibiotics, IV Hydrogen peroxide, a load of supplements, colloidal silver, and a dozen different herbal tinctures, etc. etc. etc., my symptoms were down by 60-70%. 12 day in Hawaii with 4-6 hours of sun exposure per day, and I was so sick I didn’t know if I would be able to get on the plane to return home.
I saw my GP today, and he confessed that after I returned from Hawaii last year so terribly ill, he thought I was probably terminal.
My doctor has “Lyme Disease” and is still sick after several years of therapy. He currently has more than 500 patients under treatment for what he has diagnosed as “Lyme Disease”. I couldn’t afford IV Rocephin, but many of his patients are on this very expensive IV antibiotic in addition to everything else that I did, and much more. While I was getting my fourth IV hydrogen peroxide treatment nearly a year ago, another patient was receiving his 80th peroxide IV for the year at $125 each. That patient is still sick.
What prompted this very forthright meeting today with my doctor was the way I looked. Taking extra Benicar (Q4H) seems to quell my chronic back pain just like any other symptom flare-up. I walked into his office, without a walker, feeling the best I have since starting the MP. Although only a marginal participant in my MP treatment, my GP had to admit that I not only looked the best I had since I’ve been his patient, but had to agree, somewhat begrudgingly at first, that the MP seemed to be working on what he termed “one of his very sickest patients”. His wife, the head nurse, came into the room, and he said: “Look at Dave. Can you believe how well he looks”?
For the first time my doctor confided in me that some of his patients, despite his best efforts, “crash and burn” - relapse totally even after as much as 4 years. I suspect it’s more than a few! That aside, before his wife left the room he said to her, “I think I’m going on the Marshall Protocol.” Her response was: “I’ve been on the website many times, and I think the MP is wonderful”, so maybe we have a convert who is in a position to help a lot of people.
How to I really feel? Today - great! Three days ago I had 3-4 especially miserable hours, and was just barely walking, so it’s still a war. My doctor just saw me on a good day, but then, not long ago there were no good days. I still think I have a very long way to go, but I’m winning! I think I know enough now to understand that each time I ramp up an antibiotic, or add a new one I’ll probably be in for a “butt whuuping”, but the IP flare-up will pass. If ramping up, or adding a new antibiotic puts me back in bed with intractable back problems or triggers a panic attack, so be it! I won’t like it, but I can’t do anything about it, and I’ll get through it.
I’m getting better at coping - better at knowing how to manage my IP - increasingly confident that I can get past temporary setbacks - even severe ones, and certain now that even the disabling back pain that has made much of my life more like coping than living is linked to my infection.
“I haven’t seen so far because I have stood on the shoulders of giants who came before me”, but there were giants. There are giants still. I’m just not one of them, but with a lot of help, even I am now able to see you, you tiny little CWD “*******s”. I see you even though most physicians, unfortunately, do not. I get it! Thank you Dr. Marshall, and thank all of you who help all of us!
PS: Nothing I’ve experienced on the MP is a bad a being as sick as I USED TO BE.
____________________
Dave: Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 381 |
| Status: |
Offline
|
|
Posted: Sun Apr 20th, 2008 03:16 |
|
grazyna
Member in Phase 2
 It was ONE YEAR on MP on the 12th of April 2008!
Aug 11th, 2007: Summary of phase 1.
Hello to all MPiers,
I am officially in modified phase2! It took me seven rounds on 100mg Mino and setback of agonizing lower back pain to take a plunge and add new abx. It took Aussie Barb only few seconds to point me in the right direction and explain what was happening to my body. Thanks Barb and Moxie for coming to the rescue. Another valuable lesson learned! Sudden unexplained onset of pain in any part of the body is most likely herxing everybody! Don't hesitate to ask moderators for help if its happening to you. It is easy to be irrational and stressed in the time of great discomfort.
I would like to take this opportunity to reflect on my journey so far and share my experience and progress with others. What a journey it was! (So far) Looking back, the saying be prepared for anything unexpected is probably the most accurate. I noticed changes the minute I started taking Benicar. My body was responding by eliminating inflammation and generally calming down. Fluid retention went away and I became less irritable. Pains in legs and arms subsided in the first two weeks. Driving a car was no longer painful and requiring resting my arms frequently.
There were however, scary moments of sudden palpitations and strong heart beats, shortness of breath walking upstairs or faster, most however could be controlled with extra 20mg Beni. I am glad I took initially time off work as the changes were dramatic. It took me about 4 weeks on Beni alone to understand my body response before I added Mino.
I entered MP with strong pain in the chest (bone) area moving from left to right without warning and giving me a lot of worries and unnecessary trips to hospital. It has been loosely diagnosed as costochondritis.This pain was quite persistent for some months with various degree of intensity.
Adding Mino to the mixture was another experience. Probably the most difficult was adjustment to 25mg as the reaction was immediate and herxing quite strong.
Understanding my body reaction to sun exposure was the most valuable lesson at that time. As I was progressing on Mino the reaction to the sun was diminishing.
I have learned that my body reacts fast on the first day of taking abxs. I had to stay covered and away from direct light. Any amount of sun exposure would trigger internal trembling which I could happily live without. Fatigue, headache, muscle pains, night sweating and pleasant warmth taking residence in various muscles were my close companions on every first day of taking abxs picking around 8,9 hours after. The most astonishing however were steady and noticeable improvements taking me by surprise almost daily.
Chest pain disappeared completely during 50mg Mino!!! Breathing improved almost immediately and it is only now that I understand I had breathing problem! With improvement of breathing my nostrils opened up and have not been blocked since. I lived with blocked L nostril for at least 5, 6 years. How did I put up with it?! With opened nostrils came improvement of smell and taste.
Another great surprise was a wonderful night sleep which came suddenly sometime during 75mg Mino and gave me a reason to smile in the morning not to mention singing in the shower. After years of dreamless nights I dream again! And I dream HAPPY DREAMS! Another wonderful improvement is my new fast metabolism. I have never in my living memory been so regular and free from bloating. I never knew or experienced regular bowel movement so it is wonderful to observe that body is able to regulate itself so easily, sorry for elaborating but I absolutely love the light feeling it gives me.
I do not understand all the changes that are happening to me but I certainly welcome them. I can go on and I will. I have nails so strong that the only way to enjoy it is to grow it long and paint bright red. Yep! With my new improved memory I remember that nail polish exists and that I used to love music before it started to irritate me. I enjoy it again! I know that there is more work to be done but the direction is clear. To top it off my VitD dropped down from 34 to 20! Phase1 completed in 3.5 month.
Wishing you all the best and thanking moderators and Trevor Marshall
Grazyna
April 2008: 1 Year!!
MP meds: Benicar Q8H
Light exposure: moderate
Symptoms: minimal, tinnitus at night, occasional night sweat
Comments: General improvement on all fronts
Plan: To start Phase 2.
Stopped all abx for the moment after building up Mino to 100mg and experiencing many MS like symptoms which have finally passed. I am feeling so good at the moment that it is hard to remember what it was like just a few weeks ago.
There are days (like today) I am waking up fresh as daisy and ambitiously planning my busy day ahead. The thing is that I am accomplishing my plans . The thought of TH1 is very rare. I am absolutely blown away. I walk every night for about 3km and my body feels strong. My hair stopped falling out and going grey! The new regrowth is my childhood colour!!!!!!!!
______________________
Grazyna: 14y+fatigue, muscle and joints pains muscle weakness tingling ricketsia panic attacks|3/3/07 1.25D-70,25D-34,12/07/07 1.25D-54,25D-20 12/4/07 Beni Q6H| 7/5/07 Mino| have done Mod ph2|
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 381 |
| Status: |
Offline
|
|
Posted: Sun Apr 20th, 2008 07:47 |
|
Update:
Philippa: CFS/severe visual aural sensitivity: improvement to eyes
healingjason: Autism: positive development re play/ interacting.
DThomas Debra: Sarcoidosis: 18 months. listing improvements.
Matt 15yo: Rickettsia + Lyme symptoms: Matt is pretty much back to normal.
Kas: Sarcoidosis: personal MP summary
Aunt Diana: Lyme: personal MP summary
Peggy Roo: Sarcoidosis: personal MP summary
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 381 |
| Status: |
Offline
|
|
Posted: Mon May 5th, 2008 01:07 |
|
Update
Cheryl B: has started work. "I was crippled and unable to support myself for the last 6 years".
La Vita e Bella: UshiAad: Life is beautiful - Het leven is mooi
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 381 |
| Status: |
Offline
|
|
Posted: Sun May 11th, 2008 19:59 |
|
benk
Member in Phase 3
 This is my 17th month on the MP and this is the best I have felt in 10 years: Nothing hurts!
_________________
Ben: Lyme 125D77 Ph1Dec06 Avodart Cr picolinate vit B12 NoIRs low lux home fully covered if outdoors Ph3Feb07 25D8Mar08
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 381 |
| Status: |
Offline
|
|
Posted: Mon May 12th, 2008 05:04 |
|
rebeckah
Member in Phase 2
Wanted to share that the other day: I took a shower, went grocery shopping, went to the bank(inside it!), and to my brothers for dinner & about 4 hours of socializing.
A year ago I could only manage doing one of those things a day and then being too tired for more. Even a few months ago I was having to shower a day ahead of going out as I didn't have the energy to do both in one day.
3 years ago if I did one of those things I would spend the following 3 days in bed sick and exhausted. So, nobody needs to convince me that the MP & it's science works, I can convince them!
___________________
Rebeckah: Sarcoidosis/lungs 125D39 25D8 Ph1 Jan08 oxygen 24/7 famotidine omeprazole lo lux home NoIRs limited outings covered up
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 381 |
| Status: |
Offline
|
|
Posted: Thu May 15th, 2008 03:39 |
|
Alumni Updates
Gene phase 3 update Sarcoidosis: no bladder cancer
Donna still cruising in Phase 3: Sarcoidosis: a List of No More.. .. .. .. ..
Tom's updates CFS
Jason: Autism: More good reports from Jason’s teachers
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 381 |
| Status: |
Offline
|
|
Posted: Sat May 17th, 2008 18:50 |
|
Izzy
Member in Phase 2 and on a break
I am using no ARBs or antibiotics. As I work full time I have aways had some light exposure but tried to limit it as best as possible.
It has been a good time to take stock of what overall improvements I've had. My level of chronic pain, which I have had for many years has dropped considerably. I used to come home from work exhausted both physically and mentally and I find nowadays I still have energy left for some of the fun things in life so I'm out and about much more. My thinking is more focussed and I'm better organized overall. As a simple example, tasks such as doing the income tax returns are much less daunting and completed more efficiently.
I find very encouraging: My BP was getting steadily higher before I started the MP to the point that it was recommended to go on BP meds. Blood vessels in my eyes frequently erupted and it was quite disconcerting for not only me but also others who got quite a shock when they saw the state of my eyes, When I started the MP I wondered what would happen when I stopped the ARBs. I'm happy to say that my BP has stayed in a very comfortable range even though I have been off ARBs for a while now and I really can't remember when I've last had an eruption of blood vessels in my eyes.
Best wishes to all.
Izzy
_____________________
Izzy: TBD - borreliosis, rickettsia (RMSF), chronic pain, fatigue. Nov '04 25D 28.8, 1,25D 38.5. Sept 05 25D 23, 1,25D 24. Limit light/D Oct '04. Olm. T.R. 40 mg q8h. Have used phase 2 abx. Some short breaks. Occasional Tyl 3, morphine for pain.
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 381 |
| Status: |
Offline
|
|
Posted: Mon May 19th, 2008 04:14 |
|
Alumni Updates
Natalie's Story.. Severe CFS/ME
Deb Grabetz: Sarcoidosis: more news
New interview on Bacteriality.
Peter de Jager is doing very well after suffering from severe CFS and chemical sensitivities (IBS and depression too).
previous:
pdejager: Peter: improvements update, travelling etc.
Laura1814: CFS
YoKoMo Alumni update CFS
Corey K. ph1 + ph3 update: 13yo son of Teri K: Lyme ADD w/cardiac symptoms: enjoying his new-found energy and health
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 381 |
| Status: |
Offline
|
|
Posted: Tue Jun 3rd, 2008 23:46 |
|
MaBear
Member in Phase 3
I have been on MP since Feb. 2006. I made a flow chart for the last several years listing all my vitals and complaints and showing the great improvement I have made on the MP.
I saw the doctor last week and he was pleased. He has been less than enthusiastic about the MP, but cannot argue with success!!
-My cholesterol is down from a high of 242 to now 176,LdL is down,
-Trig. down, no more need for thyroid meds(which I have taken for years)
-My deca-scan was -2.5 in 2003, -3.27 in 2005,(after actonel, Vit D etc.; now in 2008 it is -3.1 after 2 years on MP.
-I have no more IBS,
-no stress incontinence,
-my COPD has greatly improved.
-I can walk several blocks with no shortness of breath. ( I question if I truly have COPD) I do have Bronchiectiasis from so many pneumonias( due to the Lyme , no doubt.)
I still have much pain and fatigue, but less all the time.
Regards to all MaBear
_____________________
MaBear: MIS-DIAG WITH RA IN 1963 AT ONSET OF illness, DIAG WITH LYME IN 2003 BY WESTERN BLOT,BEGAN MINOCY(PULSE)IN 1992 FOR RA AND CONTINUE-TAKE ALSO VARIOUS OTHER ANTIBIOTICS.D-PANEL MAY 31,05 DPANEL D25=32,D125=67STARTED MP FEB 2006.PHASE 3, OCT 10 2006
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 381 |
| Status: |
Offline
|
|
Posted: Wed Jun 4th, 2008 02:25 |
|
Interview with Bookdad - sarcoidosis, rheumatoid arthritis
Doing MP and taking care of a Family.
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 381 |
| Status: |
Offline
|
|
Posted: Wed Jun 4th, 2008 22:13 |
|
catlady
Member in Phase 3
Hello All,
This is an update to let people know I am still on the MP and doing well, continuing to slowly improve.
So, this will be an overview of the past year+, and later on I plan to give a list of specific symptoms resolved, as well as ones I am still working through, when I get a chance to work on that. I have also agreed to be interviewed by Amy Proal on Bacteriality.com sometime soon, so that will also give people a more detailed look at my life's health journey that is appropriate for this study site.
I started the MP in January 2005 with VERY severe CFS/fibromyalgia/Th1 disease. I had been ill to some degree since childhood, had first bout with CFS at age 15, and before the MP had done already been unable to work for over 5 years, after hanging on to working by a thread for several years before that. I was suffering from severe pain and fatigue, frequent migraines, and all sorts of other symptoms. I had tried very many treatments, both "standard" and "alternative".
Prior to the MP, I had been holding myself barely together with over $1500/month out of pocket IV therapies, acupuncture, trigger point injections, huge loads of supplements, including mass doses of D3 supplements and fish oil. I also ate a lot of fish and eggs. Tests showed low adrenal function and bad thyroid function, among other things.
I have not posted in the past year mostly because I have been so busy. I have felt well enough to start a small home business, and also have had many of those "life happens" events come up, that before the MP I don't think I would have been able to respond to.
So I have been busy living life more and also dealing with family crises, ill pets, lawsuits, and other things that make me very glad I started the MP, because I don't think I could have come through these challenges very successfully at all in my pre-MP state.
I was quite ill, bedbound around 23 hours a day, prior to the MP. Throughout the treatment I have had very significant IP all along the way the first two years or so. Since then things have gradually gotten easier, I have been able to be more flexible with the antibiotics, and I have been getting my life back more and more. It remains SO obvious to me that the MP is the only game in town.
My progess has been so much that both my parents, both in their early 70s, who clearly had major Th1 issues, started the MP after I did because they could see how much better I was getting.
My mother's progress in particular has impressed me. She had severe "fibromyalgia" for years, as well as migraines, a "bad back", endometriosis resulting in a hysterectomy at age 38, allergies, adult-onset asthma, and had been feeling awful with bad function for years. But luckily for her she never got heavily onto the supplementation bandwagon. I think that has enabled to progess to more quickly than I have. She was a real skeptic about the MP to start with, but when she saw my father and I getting better, and she wasn't, she didn't want to be left behind!
During the first two years on the MP I did not take any major vacations from the MP as I required continued dosing of the antibiotics in order to keep symptoms tolerable. My "vacations" instead would consist of using frequent mino usually q12 hours to keep symptoms as low as I could. But last November (2007), we had a combination of serious family issues to deal with, as well as a an out-of-state vacation we wanted to take over the New Year's holiday, that would involve several plane flights, as well as car travel, with a fairly tight schedule.
I was able to make the vacation trip, and I found that the longer I was off the meds, the more energy and less pain I had, the fewer IP symptoms, until toward the end of the vacation I felt more like just the "overweight and out of shape" person that I indeed am, but no longer like the severely ill CFS patient that I used to be.
Going back on phase 3 I really felt the difference! Back came more severe aches and pains, digestive issues, and other stuff that had gotten a lot better or even disappeared on the vacation. So the vacation really showed me how much progress I have made. I've rolled well over 10 years off of symptoms. Even ON the combo I definitely feel significantly better than I did OFF of it when I started the MP.
During the last year, at one point I started getting really hot whenever I was moving around, especially getting my coat and hat on to go out of the house, or walking any distance I would be overheating and out of breath.
My doctor tested my thyroid hormones, and guess what: my thyroid was working properly again! Enough that combined with the small dose of thyroid hormone I was taking, my thyroid hormone level was too high. I was able to abruptly stop my thyroid supplmentation and soon was feeling a lot more comfortable.
I'd been prepared for this at the start of the MP, when we're told to watch out for hormonal adjustments. I never did need to change my dose early on, so it goes to show that things will happen when they happen, and you need to keep that in mind. I have over 20 years of medical records showing my thyroid hormone levels, and they have never been this good in all of that time.
To some this might sound disappointing: over 3 years on the MP, but still not all the way cured. But remember, I was VERY ill before I started, and I also had to undo the bad effects of several years of a high "Vitamin D" diet and supplementation, as well as using a light box, and a couple of bouts of steroids. I was not getting any better, only gradually worse, prior to the MP, and it seemed liked any time I found something that helped, it never lasted. The MP has worked, and it is lasting.
In my first year of the MP I wrote a post about the passage of time. Time will pass, and we can choose to DO something to improve ourselves during that passage, or we can just sit back and let the time go by, because taking several years to do something can sound like such a long period of time. It can be easy to forget that NOT doing anything different from what you've been doing is also a choice. Catlady post.
Well, I had nothing to lose, and everything to gain. I suppose that was the one advantage of being as ill as I was, and of trying the things I had already tried. I also have a background in medicine and that helped me to read and evaluate the science.
Ironically, it was my old physiatrist (physical medicine doctor - she did my trigger point injections and so on), who first got me really thinking about the "Vitamin D" supplements I was on. I was not responding to the treatments she was doing in any long term way. She told me "a lot of people with joint pain are turning out to have low vitamin D - we should check you for that". So she checked my 25-D.
At my next visit she told me my 25-D was 20, and that was supposedly the very low end of the normal range. "We should get you on some Vitamin D", she said. I told her that I was already on 800-1600IU per day, PLUS fish oil daily, plus a high sea food diet, AND 30 to 60 minutes per day using a light box. She looked very surprised. It gave me pause. I started doing some research, and found the MP.
I haven't seen her since I started the MP, but I heard she remains big on the Vit D supplementation bandwagon. Fortunately for me, I found the MP, the time has passed, and now I am far better than I was when I started.
My 25-D continues at 7 or less, with my 1,25D varying from 24 to 36 depending on degree of IP at the time of the blood draw.
I still have a ways to go, but I truly have to say that doing the MP is probably the best choice I have ever made.
You Moderators all did such a good job with me in the first two years that I have just been able to follow the guidelines this past year and stay on track. :-)
Best wishes to all,
Catlady
previous: Catlady: Concentration improvements
___________________
Catlady: CFIDS 25+ yrs dx'd 2001; chronic pain, migraines. 25D=7 Beni 40mg Q4-6H; Mino 1/05; Mod PH2 5/05; PH2 1/07 Ph 3
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 381 |
| Status: |
Offline
|
|
Posted: Sun Jun 8th, 2008 20:13 |
|
amypea
Member in Phase 3
I usually no longer qualify as having Chronic Fatigue syndrome or Fibromyalgia. Except for the few days here and there when I plateau on a dose and need to start either a new dose or a new antibiotic, I am virtually pain free with boundless energy. For example, on phase II I felt perfect except for the second week on the highest dose when it was time to add the new antibiotic.
This week I began Phase III. I felt AMAZING. My exercise intolerance is reduced for the first time on the MP. I can lift weights and climb stairs without panting. My periods are normal, I am losing my phase I weight and my boobs have grown one entire size which is reallly exciting. My hunch is that as my hormones are rebalancing my body is changing with it. I also have been able to work out vigorously 4 days a weeek without any body pain and this is the first time since age 19 that I have been able to work out even twice a week without pain. So, I feel better today at 34 on the MP than I have felt since age 19. I feel like I have a new life and I really love it.
So, I guess I have to take Fibro and CFS off my footer right? I also think I have to take Interstitial cystitis off the footer because this is gone also. In fact, the only thing remaining on my footer now really should be the thyroid hormone resistance. Everything else is pretty much gone.
Dr. Marshall,
You are a gift from the heaven above. Three years ago, I laid in bed hoping that I would just die. I could not work and I was just here existing as life was passing me by. The thought of law school was just a fantasy because my brain fog was so bad I could hardly remember what I ate for breakfast that morning.
I have completed my second year of law school and I am number 7 in my class. My mental condition has changed so drastically, I cannot believe I am the same person as three years ago.
I finally feel like I am on the other side of this disease and living a life I never thought I could live. I suffered for so many years with this illness that I forgot what it was like to be normal. I feel like I have a new life, like a rebirth and I am so humble to the idea that the work of great scientists and doctors are to credit for it. My biggest fear now is ever returning to that terrible sick place.
It is wonderful to have a life that is rich, rewarding, fulfilling and full of energy. I have not taken a nap since starting the Marshall Protocol and before I used to sleep my days away. I have not had body pain for more than a day here and there whereas before my body pain was so bad that doctors were giving me pain killers for it.
Thanks!
_____________________
Amypea: CFIDS, FM, Cystitis, Candida, babesiosis, Epstein Barr, Hashimoto, thyroid hormone resistance, MP 10/07 PHI, MP 05/08 PHII 06/08 PHIII
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 381 |
| Status: |
Offline
|
|
Posted: Mon Jun 9th, 2008 00:04 |
|
Dody
Member in Phase 2
Can’t believe how well I survived the camping weekend.
Light Exposure: Much more than usual: Three-day weekend under tents (mostly overcast weather but no complete refuge), then a week later a 3-hour round-trip sunny drive to convention center.
Photosensitivity: noticeably lower than this time last year.
Exercise/Activity: Helped cook for 30 people last weekend in addition to camping & attending classes rest of time. Long nights’ sleeps were my only rests. Lot of walking & standing at statewide convention yesterday. Today officially a rest day, no tasks, but no napping after 12-hour night's sleep (w Beni in middle). Busy weeks at work. Walking in basement on lunch hour.
Comments:
The past two weekends’ activities would have been unthinkable for me last summer & would have brought on acute GI sx & depression had I been forced into similar conditions.
I believe I will be on the MP for many years because I seem to have to take Phase 2 extremely slowly.
But the quality of the life I am getting back is already so much better than when I first discovered I was very sick, or when I started the MP 5 months later, 14 months ago. I feel so fortunate. And so grateful to this amazingly wonderful protocol. 
The nuisance of living covered up, and the endlessly surprising and sometimes very painful results of killing bugs, are NOTHING compared to my memory of being too sick to get out of bed for more than a couple of minutes, too sick to get to doctors' for followups to a week’s hospitalization except in a wheelchair.
I never received a credible diagnosis, or treatment, or instructions on how to ever get well again. I remember believing that I might need to accept that nothing could be done and might simply decline till I died. Thankfully a friend on the MP got word that I was sick. Thankfully many members took the time and effort to reach out. My deepest gratitude.
All best, Dody
_____________________
Dody: Lyme arrhythmia Lithium Valium Tylenol Mucinex NoIRs low lux home lite exp r/t to work cover up outside Mod Ph2Jul07 Ph2Apr08 D25Feb08
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 381 |
| Status: |
Offline
|
|
Posted: Mon Jun 9th, 2008 22:51 |
|
Update
Matt (15 yr) in phase 3 Matt considers himself cured and doesn’t give his illness much thought any more.
Lymabean (16) is almost done with phase 2. Her progress is amazing. It has enabled us to try to start to catch up in the other areas of our life.
Mel's progress: ME/CFS, auto-immune thyroiditis, endometriosis
Cold Feet: Lyme: I continue to make amazing progress
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 381 |
| Status: |
Offline
|
|
Posted: Wed Jun 11th, 2008 22:14 |
|
Ceredwyn
Member in Phase 3
I have to say thatI didn't beleive that the MP would be any different from any other tx. A short term improvement perhaps,but noreal change
I've been ill since childhood. When I was 3, I had a kidney infection thatnearly killed me and I beleive, now, that this was the first in a long line of immunilogical insults that have stolen a good 20 years of my life. I had several weird learning disabilities when I was growing up that couldn't be diagnosed because they were never constant. As an adult I was diagnosed with ADD. I have sensory integration difficulties. I have sometimes have an almost dyslexic reading problem
When I was 12 I became horribly, at times suicidally depressed and lived like that until I discovered Zoloft when I was 24. Zoloft probably saved my life and bless the drug companies for that, but it didn't help the arthritis, the stomach problems, the fatigue, the cognitive issues or the other myriad of symptoms.
At one point in my 20's I was taking 20 different medications per day to palliate my symptoms. I know this because in a fit of depressionI sat down counted the things and wrote about it in my journals. I now take 2 different meds every day and then 2 abx every other day and 1 abx every 10days Plus pain meds that I only take as needed. Going by those numbers, can I claim to being 75% cured?
My greatest gains have been in the emotional/cognitive area. I have an IQ of 130--and now other people can tell! I was explaing some of the MP stuff to a friend(a nurse) just recently and we were discussing cytokine actions and the effect ofthe VDR etc. She suddenly said to me "I just realized much this disease has screwed you over!" She went on to explain that she always knew I was smart, but she hadno idea *how* smart. I got a happy glow from that.
____________________
Ceredwyn: Lyme FM JRA1985 endometriosis osteopenia 125D79 25D39 Ph1Mar07 ModPh2Aug07 Ph2Dec07 Ph3Apr08 Armour Thyroid, Effexor Motrin Vicoden 25D14 (Aug07) NoIRs lite exp r/t child care
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 381 |
| Status: |
Offline
|
|
Posted: Sat Jun 14th, 2008 18:29 |
|
paulalbert: CFS: I'm super-busy these days
Phase 3
LIGHT: no restriction; no noticeable sensitivity
SYMPTOMS:
-food intolerance-- 0 (no complaints)
-sleep-- 1 (sleep is very steady; still on 100mg Trazodone-- I might taper that in the next few months and see what happens)
-mood-- 1-2 (80-90% of the time I'm happy; every so often I have a bit of an edge, but it's definitely infrequent)
-energy-- 3
The reason why I continue to take antibiotics is because my energy level continues to wax and wane such that a lot of time I'm just not interested in riding my bike. That said my 2004 self would give anything to be at the point I am now.
I did take a break for a month on the antibiotics and I felt really peppy, so I feel really good that I'm continuing to make progress even as I approach my 4th anniversary on the MP (7/7/08).
I'm super-busy these days, doing projects for work and, of course, Bacteriality. It's nice to pair clarity of thought with the stamina to get things done.
Paul
Interview: Paul Albert (CFS, depression, food sensitivities)
_____________________
Paul: Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / MP Gallery
|
Aussie Barb
Research Team
| Joined: | Sun Sep 10th, 2006 |
| Location: | |
| Posts: | 381 |
| Status: |
Offline
|
|
Posted: Sun Jun 15th, 2008 21:41 |
|
Elisabeth: Unexpected Improvements
Member in Phase 2
I've been on the MP for 3 months so far (whoo-hoo!) .
-I've already noticed that my pinkish-red, puffy gums are returning to a nice shade of light pink again and my gum recession (I've been told that I "brushed my gums away" when I had braces) is diminishing.
-My joint aching is gone for the most part, and
-I'm weaning down on one of my anti-depressants.
-Also, my seasonal allergies seem manageable now that I'm off of allergy shots (to be on the MP), even though I couldn't go without them previously for almost 20 yrs. without getting a sinus infection or bronchitis!!
Thanks!
Elisabeth 
_____________________
Elisabeth: CFIDS FM hypothyroidism depression TMJ sinusitis bronchitis Ph1 Mar08 (1/08) 25D10 (3/08)25D24 Effexor Zoloft Armour Thyroid MgOx Colace FiberChoice lactaid NoIRs homebound in lo lux
|
|
|
|
|
|
