Hi Mike,

Yes, those reporting their progress on the MP study site are a diverse group from all over the world but English (at this time) is a requirement. However, there is some effort to translate the protocol into other languages. The latest being the Chinese who have asked Marshall to train the doctors at Western China Hospital how to conduct the protocol. Once again, you must find a doctor to support you if you plan to do the MP. That can be problematic because doctors are a skeptical lot when you try to tell them what to do. Especially to follow a protocol discovered on the internet (grin)
.
Are you familiar with the ACCESS study? It was conducted by the government to study sarcoidosis between the years 1995 – 2001. Ten major university medical centers participated and studied 215 newly diagnosed sarc cases.

Some of the study unexpected results (among others) were:
There were no cases of documented spontaneous remission,
The use of corticosteroids made some sarc patients worse and others who showed improvement relapsed when it was discontinued,
There were 5 husband and wife combinations where both had sarc. Sarc is so rare that there shouldn’t have been any. May indicate the disease is communicable.
Sarc does not discriminate; it shares its disease equally among all races and ages.
Over the study period, 50 in the study reported additional organ involvement.

Check it out on the internet.

Gene

Dear MsL,

Thanks for your most recent post. There is so much to look at and think about; and I can't wait until I have the time to sit down and really check it out.

Your thinking regarding RSD is very wise and healthy. Modern medicine does not know where to begin to help; and I totally agree that a common sense approach and research are the answers. This is not a hopeless illness, with alternative medicine and therapies providing lots of hope.

Some may think that I should change my name to Pollyanna. (Pollyanna –noun 1. an excessively or blindly optimistic person). Actually, it is a name that I would find to be quite endearing because throughout my daughter Sarah’s 5-year struggles with RSD … hope, optimism, and God’s promise that He will provide have been the essence of what keeps us moving forward.

This thread is evidence that there is so much we can learn from each other -- no longer being left to feel quite so blind in our quest for help. Again, I thank you for sharing your research.

Jeanne

Dear Jeanne and Gene -

No wonder I'm getting confused about names around here.

Jeanne - Thank you very much for your concern. Just out of curiousity, are you aware of chronic edemic in the effected limbs showing up in CHRONIC FATIGUE, FIBROMYALGIA, AND LYMES? If you or anyone is, let me know. Txs.

Gene - Not only did I check the Internet for the ACCESS Study, but I read the free full text version, or much of it. Turns out that my treating physician and source for the information about spontaneous remission, Prof. (Emeritus) Om P. Sharma at U.S.C., was not only one of the named committee members on the report, but an author of a study the report cited for the proposition I asserted. Here's what it has to say about spontaneous remission:

“Statement on Sarcoidosis [ACCESS Study],” Am. J. Respir. Crit. Care Med., Volume 160, Number 2, August 1999, 736-755; 745:

Spontaneous remissions occur in nearly two-thirds of patients, but the course is chronic or progressive in 10 to 30% (23, 25,
28–30, 62, 179, 234).
__________________

23. Scadding, J. 1961. Prognosis of intrathoracic sarcoidosis in England:
a review of 136 cases after 5 years’ observations. Br. Med. J. 2:1165–1172.

25. Siltzbach, L. E., D. G. James, E. Neville, J. Turiaf, J. P. Battesti, O. P.
Sharma, Y. Hosoda, R. Mikami, and M. Odaka. 1974. Course and
prognosis of sarcoidosis around the world. Am. J. Med. 57:847–852.

28. Neville, E., A. N. Walker, and D. G. James. 1983. Prognostic factors
predicting the outcome of sarcoidosis: an analysis of 818 patients. Q.
J. Med. 52:525–533.

29. Romer, F. K. 1982. Presentation of sarcoidosis and outcome of pulmonary
changes. Dan. Bull. Med. 29:27–32.

30. Hillerdal, G., E. Nou, K. Osterman, and B. Schmekel. 1984. Sarcoidosis:
epidemiology and prognosis. A 15-year European study. Am. Rev.
Respir. Dis. 130:29–32.

62. Henke, C. E., G. Henke, L. R. Elveback, C. M. Beard, D. J. Ballard,
and L. T. Kurland. 1986. The epidemiology of sarcoidosis in Rochester,
Minnesota: a population-based study of incidence and survival.
Am. J. Epidemiol. 123:840–845.

179. Lynch, J. P., III, E. A. Kazerooni, and S. E. Gay. 1997. Pulmonary
sarcoidosis. Clin. Chest Med. 18:755–785.

234. Reich, J. M., and R. E. Johnson. 1985. Course and prognosis of
sarcoidosis in a nonreferral setting: analysis of 86 patients observed for
10 years. Am. J. Med. 78:61–67.

[Emphasis added.]

Free full text available at
http://ajrccm.atsjournals.org/cgi/reprint/160/2/736

I didn't address the other assertions you made about the ACCESS Study because they did not appear to be directly germaine to my post, but would strongly enourage you to read the full text of the report.

Mike

[There were 5 husband and wife combinations where both had sarc. Sarc is so rare that there shouldn’t have been any. May indicate the disease is communicable.]

Gene,

I pulled the above from your earlier post, as it is something I have been thinking about. When I posted this tread, this is exactly the kind of information I was searching for.

Interestingly, in my research of Lyme disease I learned that it is also believed by some that it too can be transmitted through semen and from mother to child through the placenta, a theory that most of us have never heard about. As my daughter has had numerous tick bites, and because of the experiences of others like Roz, we are doing all that we can to rule out the possibility that Lyme is a factor in her RSD.

You may recall that I mentioned in an earlier post to you that my Mom had Sarcoidosis; and although I do not want to be paranoid … for my daughter’s sake, I do not want to find out that we have been ignorant (uninformed). Wow, too much to think about! I will definitely be talking to her doctor about this, again in an effort to rule out any unknown factors.

I thank you so very much for taking the time to share your knowledge and experience with us.

Jeanne

Hi Folks,

Lets start taking a real good look at page number 742. If someone could post it, it is a right start. I just got a new lab top and am just learning with it. Thanks, Roz

Dear Roz -

You mean as in "Although lung fields are clear of infiltrates, parenchymal granulomas are often found in lung tissue biopsies?"

And you're right, I wasn't questioning that. What I was addressing was the well meaning posting of incorrect but seemingly authoritative information, where that information apparently came from (at best) second-hand accounts of the ACCESS Study on the Internet. Think of it as an example of a theme I've been focussed on in some of my postings on this thread.

Mike

Hi Jeanne,

I am very concerned that these Th1 diseases are contagious. That goes along with Marshall’s idea that Th1 diseases are caused by intracellular bacterial infection. The variety of bacteria and the sequence of infection determine symptoms for the various Th1 diseases. And, yes it looks like they can be passed with close contact. There are several MP members posting that have spouses and other family members ill and on the MP together. There is one family that I know of where both parents and three children are on the MP.

Now that I know the symptoms, I realize I have been infected all my life (I am 67 years young) and my illness/symptoms have varied through life depending on the condition of my immune system. If this is chronic infection, there won’t be remission until the bacteria are completely eliminated.

Between my father, his sister, their spouses, and their four children we have had a father (not related) & his son both with Parkinson’s disease, Crohn’s disease, Sarcoidosis, Breast Cancer, Cancer, Heart Disease (3), Arthritis, & Dementia. This is a strong case for infection, in my opinion, and it being contagious.

A result of Th1 illness is a dysregulated vitamin D nuclear receptor (VDR). The VDR is dysregulated by the bacteria acting as an antagonist disabling it. It will result in a high 1,25-D blood assay so that this assay is an indicator. Most doctors only test for the 25-D. Three years ago mine measured 50 pg/ml. The Merck manual says anything over 45 pg/ml will leach calcium from bone. My wife just had her 1,25-D tested and it is an alarming 64 pg/ml. We are in the process of starting her on the MP. Her symptoms are CFS, IBS, OCD as the big ones.

Gene

Mike,

You are out of line!!! I didn't come to argue. I don't have time. So I will leave you with you opinions and illness.

Gene

I am requesting everyone take a deep breath and try to get this thread back on track please

It is understandable that people will disagree on things but our guidelines call for you to disagree agreeably please.

here are the guidelines
http://neurotalk.psychcentral.com/showthread.php?t=1293
specifically
I am requesting self edits from members please

thanks

Hi Gene,

Like you, I really believe their is a infection connection as well. I am concerned about my husband as well. We all just need to hang in their. Thanks for hanging in their with us. Roz