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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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Senior Member
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PLEASE check out the link that Dubious posted re the Marshall Protocol, which includes the following:
Dr. Trevor Marshall has two degrees, both in electrical engineering. Before I begin, I want to again remind you that I am a psychiatrist who works at a state mental hospital. In my duty to full disclosure, I must say that I have known a lot of psychiatrists in my life and a few electrical engineers. If I knew nothing else of a disagreement between two people but their professions, I would believe the electrical engineer, not the psychiatrist.The point being, who needs evidence when you've got a compelling theory? Oh yeah, that and there's lots of evidence that Vit. D. deficiencies can be really bad for you. Once more, the link is http://209.85.173.132/search?q=cache...lnk&cd=8&gl=us Mike |
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Junior Member
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Mike, John Cannell is The Vitamin D Council Executive Director an organization he created himself as follows: “…In 2003, he recruited professional colleagues, friends, and family for a board of directors and took the steps necessary to incorporate The Vitamin D Council as a tax exempt, nonprofit, 501(c)(e) corporation...” I suppose that could cause many people to question if he is completely unbiased in his promotion of vitamin D. Look him up on the internet, I can't post links. Note his first sentence: “...Dr. Trevor Marshall has two degrees, both in electrical engineering. Before I begin, I want to again remind you that I am a psychiatrist who works at a state mental hospital. In my duty to full disclosure, I must say that I have known a lot of psychiatrists in my life and a few electrical engineers. If I knew nothing else of a disagreement between two people but their professions, I would believe the electrical engineer, not the psychiatrist..." As a PhD in EE Marshall has the capability to do in-silico studies at the molecular level and this has lead him to identify both agonists and antagonists to the vitamin D nuclear receptor (VDR) and forms the basis of his discussions and the MP science. He has arrived at the molecular pathway that regulates the concentration of the hormone 1,25-D. The Vitamin D council and Crannel rely on subjective epidemiological correlations ripe with confounding factors. Three peer reviewed papers about the MP have been published, three more are to be published in April. Marshall and colleges from the Autoimmunity Research Foundation have presented at science conferences in Sweden, L.A., Portugal, and China, last year. In April, Marshall has been invited to speak in Prague. Not a bad achievement for a protocol presented only 6 years ago. BTW, it has been necessary to close the MP study site to new members because the overwhelming response of over 7000 members (in olny 5 years)was too much for the small group of volunteer staff. Information is still available at a sister site to answer questions but the main site is not taking new members. As I said, neither Marshall nor myself have anything to gain. I am only sharing this information to sort of "pay it forward". I wish someone had alerted me about the MP three years sooner but I had to search for it myself. Gene |
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#3 | ||
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Hi Gene,
Thanks again for additional insight into the Marshall Protocol. As you have indicated, it is not appropriate for everyone ... but how very wonderful that it has helped you. I have read some of the testimonials on the MP website and discovered many encouraging and remarkable results. Obviously there is lots of controversy surrounding this treatment, with some ready to attack both messenger and the message. I for one am thankful you are here and hope you hang around! Thanks! Jeanne |
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Senior Member
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Dear Ed -
I am sorry if I overlooked your comments. As one whose pulmonary sarcoidosis went into spontaneous remission - as I am advised it does with aprox. 2/3 of Northern-European males - I'm wondering if you know of any studies (case-reports, etc.) involving the use of the MP with Afro-American females, for whom pulmonary sarcoidosis is often a death sentence? And I certainly didn't mean to imply that you were supportive of the MP for any financial reason. My comment was directed at doctors whose practices seem to be based largely on providing unproven treatments across a wide range of specialties, without disclosing to their patients that these treatments have yet to be validated in controlled studies. Mike Last edited by fmichael; 03-02-2009 at 02:20 PM. Reason: correcting level of spntaneous remission |
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#5 | ||
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Just a thought, Babesia (several strains) is a malaria like illness. Shortness of breath in the evening is a very common SX. The blood tests for Babesia are not accurate as well, maybe even worse than LYME tests. The M/P will not work for Babesia. Hugs, Roz |
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#6 | ||
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Dear Mike,
Here's your post on quinine, I believe it was from Ada's link. Do you think it might of been possiable that you had a HERX reaction? A herx. reaction can kill someone. If you were well, why on earth do you need a breathing machine at night? Please research Babesia, I beg of you. Much Love, Roz I was given it years ago, and it was essentially useless. 100+ years ago it might have been the best drug available, but now we have far better. There was, however, one interesting moment in which I accidentally aspirated a capsule into my lungs and was sick for weeks. |
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#7 | |||
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Senior Member
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I use the BiPAP machine for obstructive sleep apnea. This has nothing to do with the sarcoidosis, which has been clear for the last 2-3 years on CT lung scans, where it was first picked up, before being confirmed on biopsy. And I'll take a look at Babesia, thanks. Mike |
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#8 | ||
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Junior Member
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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 |
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#9 | ||
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Member
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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 |
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"Thanks for this!" says: | Mslday (03-02-2009) |
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#10 | ||
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Member
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[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 |
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