 |
| Author | Post |
|---|
Chronic Triathlete
Member
| Joined: | Wed Mar 19th, 2008 |
| Location: | New York USA |
| Posts: | 5 |
| Status: |
Offline
|
|
Posted: Wed Mar 19th, 2008 18:45 |
|
Hi. This is my first post 
I've been suffering with CFS-like symptoms for about 6 months now. Been to many doctors who have turned up nothing. I'm very healthy on paper, but my body tells me otherwise. I have pretty heavy and continuous fatigue, brain fog, minor aches and pains, headaches and tingling in my hands, feet and face. This sucks a lot becuase as of 6 months ago I was in the best shape of my life. I am (I was) a competitive long distance runner and triathlete. My exercise level now is about zero.
I've been looking into the MP, talking to current participants and I think I'm ready to try a theaputic probe to see how I react. I have an appointment set up with a new doctor (referred to me by someone who's on the MP) and I'm going to ask him to do the initial tests.
My first question is about suppliments and these first tests. I read somewhere, either here or on marshallprotocol.com, that I need to stop all suppliments before the testing. How long before the testing do I need to be "clean"? Also, I'm currently taking Nystatin for a minor Candida infection. I assume I need to stop that too?
Thanks for your guidance. I look forward to learning more and (very hopefully) improving my health.
|
GeorgeinRollaMO
Advocate
| Joined: | Sat Oct 20th, 2007 |
| Location: | Rolla, Missouri USA |
| Posts: | 331 |
| Status: |
Offline
|
|
Posted: Thu Mar 20th, 2008 04:44 |
|
Hi, C.T.,
Welcome!!!
Numerous CFS folks have improved on the MP. But the result will not come quick and painlessly... as you may have read. But the end result is good. Check out "Ames" posts on the 'study' forum. She is the author of the articles at http://www.bacteriality.com Do read the articles in the right column, too, and the Interviews below them. see also CHRONIC FATIGUE SYNDROME and Th1 inflammation: includes links to individual Member experiences of improving Health
I do not know who knows with a certainty how long one must refrain from supplements before doing the MP. But two weeks should cover the issue. Unless you are taking "rodent poison"... D3, otherwise called "vitamin" D. Then, the sooner the better with quiting D.
If you want to know about D3 as rodent poison, check out "Pleasant Valley Farm Supply" with a Google search, then "Quintox" using that sites search engine at the top of the page. And think that a little arsenic, lead, mercury and thallium will do the job just as well, if given just a little bit over a longer time. Do you think that there could be a correlation between D3 and ostoeporosis and heart failure in people over a long run? And perhaps other problems as well? 
I did Nystatin for numerous months prior to the MP and never had any luck with getting rid of yeast. I now believe it is as Dr. Marshall says, we need our innate immune system to get rid of all invaders.
The 125D and 25D tests will tell the tale of whether you have the Th1 inflammation. I would strongly suggest that you do the tests at Quest Diagnositic Labs. They have shown to be the most reliable with the results. Use their procedure code of # 5678. Other labs are not as reliable with their results. Another popular lab gave me one half of a score that I received from Quest. Quest's result correlated with my IP (herxin) much better that the also-ran lab.
When you are ready, ask for an interpretation here Preliminary test results (for Comment)
And do read, read and read some more, so that you can be your own best advocate. ABC of MP
Wishing you, and all, wellness!!!
Dark Vader...aka, George
____________________
Borreliosis (but really Th1 inflammation). Start D values, July '04, 125D/57, 25D/61...over supplementation with D (fish oil).
|
edj2001
Advocate
| Joined: | Mon Oct 29th, 2007 |
| Location: | Allen, Texas USA |
| Posts: | 160 |
| Status: |
Offline
|
|
Posted: Thu Mar 20th, 2008 06:01 |
|
Hello CT,
I understand your symptoms and the MP is the right place for you.
I was age group competing in marathons and biathlons (run-bike-run) before the sarc took over. During my last biathlon, I did the run and started the bike and my body just shut down. I slowed on the bike and just stalled out falling over unconscious for a few seconds.
I was like that little man on the tricycle on Saturday night live  At the time, no one could explain it, but I now know it was chronic fatigue. Later that year, 1998, I got ill with a virus along with everyone else in the office. They all got better but I didn't. Early 1999 I was diagnosed with lymph node sarc via biopsy.
I now know I have been infected with this bacteria all my life it was just a queston of bacteria load v.s. my immune system that finally tiped in favor of the bacteria.
Best of luck on the MP,
Gene
____________________
Sarcoidosis 1998| MP Dec 05| Gene's Story| About MP| ABC of MP| Perspectives|
|
Chronic Triathlete
Member
| Joined: | Wed Mar 19th, 2008 |
| Location: | New York USA |
| Posts: | 5 |
| Status: |
Offline
|
|
Posted: Thu Mar 20th, 2008 18:00 |
|
Gene & George,
Thanks for your reply!
I've read "Ames" reports on her CFS and been emailing with her. She connected me with her boyfriend, Paul, who's making great strides in his recovery as well. He's a cyclist like me and we actually talked on the phone the other night. Nice to talk to someone who understands what this illness takes away from you when you're an elite athlete.
I have a couple more questions:
1) I just got some viral test back from my doctor. I've got a high Chlamydia pneumoniae IgG = 1:512 and high HHV6 IgG = 1:320 (as well as EBV and CMV). Though he's receptive to the MP, and has a few other patients on it, he wants me to look into anti-virals (Valcyte) first. This is where I was mentally before I learned about the MP and I'm having a hard time deciding what to do. I understand that the MP goes for the root cause and that treating the viruses doesn't really fix them systemic problem, but I'm still torn. What can you tell me about dealing with viruses and the MP? Should I do that first for 6 months and then the MP?
2) My doctor (who's a very prominent CFS doctor in NYC. He treats celebrities and many, many regular CFS patients) says that CWD bateria are, like the viruses mentioned above, simply just another opportunistic bug taking advantage of a compromised immune system. True? False? Semi-true?
Thanks for your responses. I think the main reason I'm interested in the MP is the way the community empowers its participants to help themselves instead of sitting around waiting on their doctors to figure it all out. That and it's "curative" potential.
BTW... I'm working on setting up my own blog around my issues. The link is in my bio.
Best
CT
|
edj2001
Advocate
| Joined: | Mon Oct 29th, 2007 |
| Location: | Allen, Texas USA |
| Posts: | 160 |
| Status: |
Offline
|
|
Posted: Thu Mar 20th, 2008 19:40 |
|
Hello CT,
Looks like you are getting a good start on your web page.
One of the hardest parts of my illness was convincing anyone I was sick as I was also in excellent shape at the time and, IMHO, looked great at age 57 . I always said once I did all the work to get in excellent physical shape and live healthy to extend life span I would get hit by a truck crossing the street. I never expected the truck would be billions of bugs 
If you want to see what these guys look like, take a look at this link to see some video of the bacteria in live blood. Go to the picture of the microscope slide in the upper right of the first page and dbl click. Your video player software (for me it is real player) should open and the video should play. One of the authors is Dr. Andrew Wright a CFS researcher in the UK. I read he has studied blood from as many as 600 CFS patients who also presented with this infection.
Look for the “string of pearls” that are colonies of bacteria. He lets the blood set for up to 36 hours to cause the bacteria to leave the cells.
http://autoimmunityresearch.org/karolinska-handout.pdf
This is the MP thread on the Karolinska conference you may find interesting reading:
http://www.marshallprotocol.com/forum39/6362.html
Hope this helps,
Gene
____________________
Sarcoidosis 1998| MP Dec 05| Gene's Story| About MP| ABC of MP| Perspectives|
|
GeorgeinRollaMO
Advocate
| Joined: | Sat Oct 20th, 2007 |
| Location: | Rolla, Missouri USA |
| Posts: | 331 |
| Status: |
Offline
|
|
Posted: Fri Mar 21st, 2008 16:05 |
|
CT,
You state and ask, "2) My doctor (who's a very prominent CFS doctor in NYC. He treats celebrities and many, many regular CFS patients) says that CWD bateria are, like the viruses mentioned above, simply just another opportunistic bug taking advantage of a compromised immune system. True? False? Semi-true?"
If you have not read the answer already, what happens is that the CWD form of the bacteria, also called L-forms, get inside of the macrophages of the immune system itself. When there, they produce a product which is called 'capnine' to dysregulate the activity of the VDR, which transcribes the many products that the innate immune system needs. The L-forms are the actual cause of the compromised immune system. They are not just taking advantage of an already compromised immune system. So, the answer to your question is False.
Hoping that this helps.
Wishing you, and all, wellness!!!
Dark Vader...aka, George
____________________
Borreliosis (but really Th1 inflammation). Start D values, July '04, 125D/57, 25D/61...over supplementation with D (fish oil).
|
Chronic Triathlete
Member
| Joined: | Wed Mar 19th, 2008 |
| Location: | New York USA |
| Posts: | 5 |
| Status: |
Offline
|
|
Posted: Sun Mar 23rd, 2008 02:22 |
|
Hey all. Thank for the replys. I'm typing this on my iPhone so please excuse any typos.
Can someone share some input on my first question above? The viruses, should I try to beat them down a bit and thendo the MP or doesn't it matter?
Also... New question... my wife and I are trying to formulate a series of plans for dealing with the first year of the protocol. Its my understanding that the first 12 months are the hardest and we want to be prepared for issues with my working (or not) if it becomes too much to keep my busy day job in the NYC advertising rat race. I'm wondering how many of you have been able to keep working 100% through the protocol?
Thanks!
CT
|
GeorgeinRollaMO
Advocate
| Joined: | Sat Oct 20th, 2007 |
| Location: | Rolla, Missouri USA |
| Posts: | 331 |
| Status: |
Offline
|
|
Posted: Sun Mar 23rd, 2008 03:00 |
|
CT,
Tell me about the thing that would beat viruses? When did it get invented?
Sorry! the last that I knew was that there was NOTHING that could kill viruses, except the immune system. In the sixties, people thought that antibiotics did that, and so doctors misused that remedy for bacteria, but have been told otherwise recently. Correctly, IMO.
Who told you this, "Its my understanding that the first 12 months are the hardest..."? I look back now and realize that was a song and dance.  Maybe, it was the hardest because there was sooo much to learn!
I suggest that you read the posts of member "John McDonald". He is in international sales of very competitive scientific apparatus. He is a physicist.
Just do the MP slowly!!!! Do not ramp as though tomorrow needs to be yesterday. Do not expect an end point fast.
Wishing you, and all, wellness!!!
Dark Vader...aka, George
see Will the Marshall Protocol treat co-infections?
Personal, Family, Relationship Tips
How to use our search feature
ABC of MP
____________________
Borreliosis (but really Th1 inflammation). Start D values, July '04, 125D/57, 25D/61...over supplementation with D (fish oil).
|
Claudia
Member
|
Posted: Sun Mar 23rd, 2008 05:53 |
|
Hi CT,
I've had CFS, with a badly compromised immune system for years. In the past, if I caught a cold (virus) it generally laid me up for weeks and usually involved opportunistic bacterial infections of my sinuses or chest.
Today I have been on the MP for 2 years. The last time I caught a cold was when I was still in Phase I. And that was brief. I have not been bothered by viral colds or influenza in over a year and a half, in spite of two extended overseas trips (with many airplane flights - once a surefire way to catch cold) and a year of domestic travel, taking in the whole of Australia. People around me catch colds & flu, they sneeze away and I just don't catch their viruses. (knock wood!)
Point is, IMHO you should do the MP first and your immune system will be enabled enough to fight off the viruses... it seems they are "easier" than the CWD bugs!!
Claudia
____________________
MP from March 2006; Now in Phase III; Dx Thyroiditis; arthritis; eye irritation & glaucoma; history of CFS (1988-92);Kidney & bladder probs. Making steady progress toward recovery
|
Chronic Triathlete
Member
| Joined: | Wed Mar 19th, 2008 |
| Location: | New York USA |
| Posts: | 5 |
| Status: |
Offline
|
|
Posted: Mon Mar 24th, 2008 15:14 |
|
Hey. Thanks again for the replies.
More iPhone typing. Sorry for typos.
I know that everyones journey through the MP is different but I'm still eager to hear about some general experiences about working while on it. I did read John McDonalds posting in the public area and he certainly seemed to get by but I'm reading so many more from people who don't seem to be working fulltime.
I think this is a pretty fair first question to ask on this site as I would imagine that its a huge concern to so many people. My wife (and I) are very anxious about this aspect of treatment. I am both the stable bread winner (she runs a freelance business) and the health insurance. We have a 3 year old girl and... well, you get the idea.
I'm pretty comitted at this time to doing the MP but I don't want to go into this blindly without a plan for taking care of my responsabilities as a parent and spouse.
I'm methodical in this way. Ducks in a row and all that. Health is my primary concern but i can't abandon my other responsibilites while a achieve it onthe MP.
Thanks!
CT
|
DonM
Member
| Joined: | Tue Oct 23rd, 2007 |
| Location: | Florida USA |
| Posts: | 6 |
| Status: |
Offline
|
|
Posted: Wed Mar 26th, 2008 16:09 |
|
CT,
I've been on the MP for 28 months now and have continued to work throughout. I have missed work only on days that I have a doctor's appointment since my MP doctor is a two hour drive each way. But I only see him every three months. I write software for a major defense contractor, so I sit in front of a computer all day. When I started the protocol I removed the flourescent light bulbs from the lights above my desk and I would wear my 10% NoIRs while working at the computer. After about one year on the MP I switched to 40% NoIRS because I could no longer see the computer screen well enough with the 10% glasses. My commute to work is only 15 minutes each way and I always wear long sleeved shirts and the 2% NoIRs when driving when the sun is up.
My herxes have been tolerable consisting of various pains that last for minutes to an hour or so, sore throat, rashes, tinitus, coughing, and occasional dizziness. Also, most days when I get home from work I am very fatigued. I have also experienced emotional types of herxes such as depression, feelings of worthlessness, irritability, and rage.
Good Luck!
Don
____________________
Sarcoidosis; MP Phase 3
|
Susan R
Member
| Joined: | Sun Mar 30th, 2008 |
| Location: | Oregon USA |
| Posts: | 19 |
| Status: |
Offline
|
|
Posted: Sun Mar 30th, 2008 22:52 |
|
Hi there,
This is my first post on here, as well.
Thank you, and best wishes.
Moderator Note: Susan, your post has been moved to your own personal thread Susan R's questions. Thank you.
____________________
This won't let me close my profile
|
Alayne
Member
|
Posted: Fri Apr 4th, 2008 20:53 |
|
CT,
I know pretty well what you mean by NY City's advertising rat race. Since you've been such an ardent athlete and have a job like this, it undoubtedly means you're used to pushing yourself to pretty big limits.
I was in your position about seven years ago (executive and athlete). My energy levels had really waned in my last year of work and I couldn't train nearly as much, but then then I "suddenly" hit the wall. I had to stop working - period. Now, had I known about the MP back then, I might have have started it long before my symptoms threw me to the floor and grounded me.
That said, after a year, I was able to go back to school, get some courses under my belt and start teaching. However, because I wasn't taking care of the CFS itself - hadn't yet been diagnosed with it, I relapsed to point of being bed/wheelchair bound and thought I was going to die.
Anyhow, was finally correctly dx'd by a CFS clinic. And yes indeed, they found all the same viruses in me, as in you. It would take me 6-8 weeks to get over a virus before I started the MP, and I was ill 11 months out of the year. Since being on the MP, I've had one cold. My experience has been that as my bacterial load's dropped, the immune system's able to handle the viruses. I was on an anti-viral before the MP and it did zippo to help.
It seems to me that many folks who held full-time jobs before the MP have been able to continue working. Many folks have had to make adjustments to their work load or job specs as well, so they can get through it. Since you are clearly ill, it might be that your company will make certain concessions for you - they should by law, if I'm not mistaken. (I know, however, that you won't want to be a pain in the butt, but sometimes we have to be to get things changed in our favor).
I'd recommend taking some time off when beginning the MP, just so you can get your bearings or footing. Plus, you'll be going through some hormonal changes that might make things "interesting" for a few weeks or more. It takes a while to understand how the meds will affect you, as well as learning how to moderate/modulate the immunopathology. It's best to learn when you're not entirely stressed out by work, although not everyone's been able to do that.
I'm not in your shoes, in that I wasn't able to work before I started the MP. However, after 2.5 years, I'm able to live a much more active life and am slowly getting back into working. Who'd have thunk?
I'm fairly certain that if I'd started the MP seven years ago when I was more at your stage, I would have been able to continue working in some capacity.
I do hope this makes some sense and perhaps helps you a bit. I don't have a wife and child, but I do have a very sick husband who's also on the MP. He was an avid athlete and professional photographer who rapidly went downhill within a six month period before starting the MP. He has neurological tick-borne disease, however, and his brain and body have been pretty fried, so he's not been able to work full-time. In retrospect, he had symptoms for a very long time before this happened.
Take care of yourself CT. I know it's not an easy time now and these decisions and "what if's" are tough. However, in the long run, I do know that if I hadn't done the MP, and if my husband hadn't, we'd either be dead or on the street.
All best,
Alayne
P.S. My husband and I are starting to exercise some again, albeit very slowly. We don't know if we'll reach our hardcore athletic days again, but are hoping to.
____________________
ME/CFS/FM |6/05:25D-34 1,25D-69|11/07:25D-8 1,25-37| Sick 6-11 mos/yr x 20+yrs|NoIRs/Avoid Sun/D/Use Zinc oxide|11.17.05-Ph1|5.06-Mod Ph2| 12.06-MPh2#2|6/07-MPh2#3|NonMP Meds:Sleep-Alternate 2.5mgLorazepam w/OTC med/Milk Thistle/Calc&Mag/Lysine
|
Chronic Triathlete
Member
| Joined: | Wed Mar 19th, 2008 |
| Location: | New York USA |
| Posts: | 5 |
| Status: |
Offline
|
|
Posted: Sat Apr 12th, 2008 22:39 |
|
Hello again. I still haven't started the MP yet. I had a rather surprising diagnosis of Lyme Disease a couple weeks ago and it threw me off track with my desire to do the MP for (what I though was) CFS. I've been reading and researching.
I've since read that the MP is also a treatment for people with Lyme, but I've had a difficult time finding personal accounts from patients. I realize that in the mind of the MP Lyme is just a different variation of the same Th1 disease. Still, I'm even more confused now than I was with the CFS in that there are so many strong camps of LLMDs who believe that high-dose abx are the way to treat it. I'm currently on oral Doxy right now. No talk of IV yet.
I'd really appreciate it if someone could point me to reading on or share their story (or link to it) of Lyme and the MP.
Thanks!
CT
|
Knochen
Advocate
| Joined: | Wed Oct 17th, 2007 |
| Location: | USA |
| Posts: | 224 |
| Status: |
Offline
|
|
Posted: Sat Apr 12th, 2008 22:53 |
|
http://www.marshallprotocol.com/forum37/3139.html
Examples are listed partway down the page.
As for using doxy, please have a look at:
http://www.marshallprotocol.com/forum32/3805.html
Use Google's "advanced" search page and put in http://www.marshallprotocol.com/ as the domain to serch for. The Google search is far better than the one on the forum. Or you can type it in directly to google's search box like this: "doxycycline" site:http://www.marshallprotocol.com/
see Googles Custom Search
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
|
Aunt Diana
Advocate
| Joined: | Fri Oct 26th, 2007 |
| Location: | |
| Posts: | 82 |
| Status: |
Offline
|
|
Posted: Sun Apr 13th, 2008 02:09 |
|
Hi CT,
Well, I am one who has had Lyme for almost twenty years now. I've been on the MP for 2.25 years and am pleased to report that I have seen much progress. Much more than I ever experienced on regular antibiotics (which I was on, every possible combo except I never took cetrafiaxone)....there are many problems with the regular antibiotic therapy: I found that as soon as I stopped taking an antibiotic the symptoms would gradually return. I found it harder and harder to find doctors who would prescribe them to me. I always felt like I was crawling from one doctor to another hoping they would be open minded and give me the antibiotic. Also I never got beyond feeling 80% better and that would vary....I never really felt well. ALso, now that I understand the MP, those antibiotics only force the bacteria to change their form so they convert to L-forms...which is what the MP targets.
The Mp is a really different experience altogether. It is very slow and sometimes the IPs can be very painful and difficult, but little by little I am getting my llife back. Many of the symptoms I used to have have completely disappeared at this point.
____________________
| ABC of MP| MP Stories| Bacteriality|
|
Bridgework
Member
| Joined: | Wed Sep 24th, 2008 |
| Location: | |
| Posts: | 4 |
| Status: |
Offline
|
|
Posted: Wed Sep 24th, 2008 18:50 |
|
CT, hello. Your post struck a chord in me. This is a first time post for me - i have been lurking on the protocol site and otherwise around the internet to learn more of the MP.
About six months back, I did a 6K with the son - he was 9 months old and strollers were welcome. It was a personal best time for me - even without the BOB - in a race. We won the stroller class and while it was not competitive per se, the faces of those other stroller dads were clear; the race was on.
Afterwards at brunch I felt a vague sickness, which led me after a month to a doctor's office. The nurse practicioner suspected Lyme, and I started Doxy. The western Blot came back positive. And began treatment with a couple Lyme doctors with fantastic reputations. But I do not feel better. With the coinfections that tend to travel with Bb, the approach ends up a kin to the "whacking moles game." And I still hear, "you are getting well," a lot. I sure do not feel it on the bike; I ride but it is very different.
One doc told me the other afternoon, "you are too intense; you need to meditate." I think meditation is fine but it is damn hard to relax when bacteria threaten your lifestyle and even life.
As someone who has become very scientific in training, the MP appeals to me. It is based on reason and seems to produce results as it addresses the cause - whether it is CFS or Lyme or whatever. I am still whacking moles for now as i think there is something to be said for due diligence but I am close to a switch to the MP.
Good luck to you in your quest to return to health.
|
Current time is 15:36 | |
|
|
|
|
