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dcarson777
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| Joined: | Sat Nov 15th, 2008 |
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Posted: Sat Nov 15th, 2008 18:38 |
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I had posted a message on the Discussion board at the Foundation for Sarcoidosis Research which referenced http://www.sarcinfo.com and I received the following in my inbox from the site coordinator
Good morning. Your post was brought to our attention because you discuss the Marshall Protocol, and there is a community rule in place which specifies that the Marshall Protocol, Mr. Marshall or any of his sites may not be discussed or referenced in the community. They have been removed for this reason.
The site that I got my information from is http://www.sarcinfo.com I did see some of Dr. Marshall's papers on the site, what I don't understand is why this information is being rejected by others in the medical community. Would some one please explain.
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Dr Trevor Marshall
Research Team
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Posted: Sat Nov 15th, 2008 18:59 |
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I don't understand is why this information is being rejected by others in the medical community
Was the letter to you signed by a physician, or just by a sarcoid patient?
There are sarcoidosis patients who are so locked into the concept that their disease is special, is unique, that they try to deny its seriousness until it finally kills them.
Our presentations at the 6th Intl Congress on Autoimmunity did not canvass sarcoidosis, as the pathogenesis and curative therapy is a "done deal," and was reported at the Congress in 2004, published in 2003/2004 'Autoimmunity Reviews'.
See the photo at:
http://www.marshallprotocol.com/forum39/12376.html
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dcarson777
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Posted: Sat Nov 15th, 2008 22:59 |
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The reply was sent to me by the site moderator, her name is Beth and the following is her information from the Foundation on Sarcoidosis Research:
About Beth - http://www.inspire.com/Beth
- 34 years old, Female, Married
- Mc Lean, Virginia
- Joined March 8, 2006
Hello there! My name is Beth, and I am a member of the team that makes sure this site runs smoothly and is a pleasant place for members to visit. I'm sure many of you are here due to serious illness or injury so I hope you find the site useful. Walter and I are here to help with any questions that you ...
Thanks
David L. Carson Sr.
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Dr Trevor Marshall
Research Team
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Posted: Sat Nov 15th, 2008 23:51 |
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I don't know 'Beth' or 'Walter.' I have spoken with Andrea Wilson (The FSR President) several times, most recently at the American Thoracic Society conference in San Diego, 2005. Apparently she feels Sarcies are doing just fine. Here is what Chicago's NBC5 reported about her a few years ago:Andrea Wilson was first diagnosed with sarcoidosis by a doctor who did not know how to treat the disease, she said. "I think the scariest part was when a doctor said, 'You know, we don't know what to do with you, and, basically, you have to get your affairs in order and be ready to go any minute,'" Wilson said.
But instead of giving up, Wilson found doctors who did know how to treat her. Now, seven years later, her only major symptom is fatigue. Wilson takes a number of medications. Blood tests help to determine if the treatments are working.
When sarcoidosis invades the heart, it can weaken the muscle or, more commonly, short-circuit the heart's electrical impulses, Lites said.
"For example, irregular heart rhythms or arrhythmias can develop and be life threatening," Dr. Nancy Sassower, Wilson's physician, said.
Nobody knows the cause of sarcoidosis yet, but there may be a genetic link. That's one reason why Wilson and her husband have formed a foundation to help find a cure -- before their daughter is old enough to be at risk.
"Every time I look at her, I think, 'I've got to go on, I've got to push on,'" Wilson said. "So I think if not in my lifetime, at least in her lifetime we will have a cure."
I guess she still feels she is doing OK  I wonder how her Executive Director Debbie Durrer is doing? She seemed to have a nasty Sarc cough when we met at the ATS conference.
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Rico
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Posted: Sun Nov 16th, 2008 02:58 |
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I, too, met a similar fate at one or two Sarcoidosis forums back some time ago. I was told my message about the MP and it successes were not to be mentioned - shades of Orwell's "1984".
It's incredible how sick, dying, patients are in denial and are so stubborn to not even be willing to seriously read and consider the successes of the MP science. They will one day regret what they've done. It's so tragic as many suffering people appear on those forums and are misled by a few...
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billsarc
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| Joined: | Sat Dec 13th, 2008 |
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Posted: Fri Dec 19th, 2008 22:01 |
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When you say "done deal" does that mean the MP for sarcoidosis will cure the sarcoidosis disease if followed to completion?
Thanks for an answer and all you do.
I have sooooo much more reading to do on this
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Dr Trevor Marshall
Research Team
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Posted: Fri Dec 19th, 2008 22:54 |
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We have not had a significant number of treatment failures in the sarcoidosis patients in our study cohort who have seen the therapy to completion.
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billsarc
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Posted: Fri Dec 19th, 2008 23:13 |
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Thanks Trevor
What would be the cause for the small number of failures?
From my perspective it appears as if I'll develop chronic sarcoidosis in the future.....if I don't already have it
Are any of the participants chronic sarcoidosis patients? How are they doing?
I'm going to be talking to my doctor next week and asking him about the MP and see if he'll monitor me
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billsarc
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Posted: Fri Dec 19th, 2008 23:35 |
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Hi Trever
I'm curious if you've seen this? I'm not exactly sure what it means but I'm sure you do easily.
Does this help us and the MP?
J Immunol. 2008 Dec 15;181(12):8784-96.Click here to read Links T cell responses to mycobacterial catalase-peroxidase profile a pathogenic antigen in systemic sarcoidosis. Chen ES, Wahlström J, Song Z, Willett MH, Wikén M, Yung RC, West EE, McDyer JF, Zhang Y, Eklund A, Grunewald J, Moller DR.
Department of Medicine, Division of Pulmonary and Critical Care Medicine, The Johns Hopkins University School of Medicine, Baltimore, MD 21205, USA.
Sarcoidosis is a systemic granulomatous disease associated with local epithelioid granulomas, CD4(+) T cells, and Th1 cytokines. The tissue Ags that drive this granulomatous inflammation are uncertain. In this study, we used IFN-gamma-ELISPOT assays and flow cytometry to assess lung and blood T cell responses to the candidate pathogenic Ag, Mycobacterium tuberculosis catalase-peroxidase (mKatG) in patients with sarcoidosis from two centers. Despite differences in patient phenotypic, genetic, and prognostic characteristics, we report that T cell responses to mKatG were remarkably similar in these cohorts, with higher frequencies of mKatG-reactive, IFN-gamma-expressing T cells in the blood of sarcoidosis patients compared with nontuberculosis sensitized healthy controls, and (in a subset) in greater numbers than T cells reactive to purified protein derivative. In sarcoidosis, mKatG-reactive CD4(+) Th1 cells preferentially accumulated in the lung, indicating a compartmentalized response. Patients with or without Löfgren syndrome had similar frequencies of mKatG specific IFN-gamma-expressing blood T cells. Circulating mKatG-reactive T cells were found in chronic active sarcoidosis but not in patients with inactive disease. Together, these results demonstrate that T cell responses to mKatG in sarcoidosis fit a profile expected for a pathogenic Ag, supporting an immunotherapeutic approach to this disease
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Deedee
Member
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Posted: Sat Dec 20th, 2008 02:57 |
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I tried to post the above study at the same website being discussed and asked if those who had criticized the MP and Dr. Marshall might rethink their position based on this most recent Moller study, which states that there is a bacterial cause and the disease should be treated with an immunotherapuetic approach. (Gee--doesn't that sound familiar???) You would have thought I shot someone. I received a caustic reply from Paradox, who is a doctor who apparently developed a list of sarcoidosis "myths" of which one is that bacteria has nothing to do with sarcoidosis. I guess all of this research and the good results that MP is producing is shooting holes in his rhetoric, which he is very emotionally attached to and unable to think critically anymore. Also, he had some untrue and disparaging things to say about the MP research team, which I tried to correct but was deleted. It is OK on that site to say bad things about MP but you can not breath "MP, Dr. Marshall or bacterial eitology" without a huge reaction and censorship. I got a "warning" note from the moderator not to "push the line" on their ban of MP. Posts for Amy's site and other totally unrelated to the MP sites that discuss bacteria eitology or even a site that just talks about how bacteria can hide, were deleted. A response to my post by a physician supporting the research for bacterial links and asking if perhaps Gardner would rethink his position on refusing to consider bacterial links was like-wise deleted. The next morning I had about 6 replies to the post that I could not link to and the entire post was deleted. A physician PM'd to me and told me he had 3 posts deleted that had nothing to do with MP.
It seems that the moderators of this site do not want anyone to know anything about the bacterial causes and the crippled immune system that those of us with sarcoidosis have, or any information on how we might restore our immune systems. It is a waste of time to try to have any kind of intelligent conversation on this website. What is sad is all of the people that go to this site and have important information censored.
For a better site, go to http://www.sarcoidosis.ning.com which has a MP group.
Last edited on Sat Dec 20th, 2008 03:13 by Deedee
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Sarcoidosis,lymphopathy. Diagnosed 7/26/08. 8/15/08 started MP; 11/7/08; 11/5/08 VitD24; Lipids: Chol350;LDL220;HDL>350;CRP>4
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edj2001
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| Joined: | Mon Oct 29th, 2007 |
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Posted: Sat Dec 20th, 2008 05:10 |
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Hi Deedee
I know what you mean about some of the sarc sites.  Every now and then I will get the urge to jump in and stir the water a little at these sites. 
Remember Th1 chronic diseases are considered idiopathic by the medical community therefore, there is no FDA approved treatment and all medications prescribed are off label. For example, I can’t imagine anyone using methotrexate to treat these diseases.
However, the ARF has obtained “orphan drug” status for two of the MP abx for use with sarc and the rest are in process.
The MP can be a hard pill to swallow for some because it is counter intuitive to conventional thinking in several ways, some that I can think of off the top of my head are:
1. Low measured 25-Vitamin D being the result of disease not the cause. The Vitamin D lobby is huge, plus there is a ton of epidemiological information the medical community use to encourage supplementation even to the point of supplementing breast fed infants. They call this evidence based medicine and it is very subjective. Molecular biology is science based and very objective.
2. Using a high concentration of Benicar as a VDR agonist based on in silico data and affinity calculations. A new generation of educated scientists will be required to understand this.
3. That benicar has diminishing return as a high pressure blood pressure treatment with increased concentration. Per the manufacturer published curves.
4. Using pulsed, low dose, bacteriostatic abx, to interfere with the bacteria ability to translate protein used as a VDR antagonist.
5. Immunopathology (Herxheimer reaction), “no pain no gain” is the fact here.
6. Not a two week cure, may take several years to cure.
GeneLast edited on Sat Dec 20th, 2008 05:13 by edj2001
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