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Old 01-22-2016, 12:39 PM #1
DavidHC DavidHC is offline
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Yes, of course. Thank you. If I do it, I will do extensive testing of any potential donor. FMT has the potential to do great good or bad to the immune system, so great care is essential.

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A lot goes on into clinical trials that you can never read about. There are many preliminary requirements, too many to list, on a case by case basis that are documented privately.

With this particular study, I would ask if I were safe from contracting campylobacter jenjuni or cytomegalovirus, two causes of Guillian Barre Syndrome. SFN is the worst thing until you compare it to large fiber, both sensory and motor, cranial, autonomic all together like in GBS. Please be careful.
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Old 01-22-2016, 11:30 AM #2
DavidHC DavidHC is offline
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Hi SylvieM,


I noted there are other studies and that you need just look for them. Again, these are studies of its use for ulceritive colitis. Here is a very prominent one, but it's not the only one: http://www.ncbi.nlm.nih.gov/pubmed/25857665. The studies have been successful, and it's not at all true that "there is no good data to support positive outcomes" in other conditions, as they leading scientists and physicians would say. If you note, their expert and clinically supported conclusion is: "FMT induces remission in a significantly greater percentage of patients with active UC than placebo, with no difference in adverse events." This is not the only study with positive outcomes like this. And like I said, from what I've heard from out of Europe, studies are being successfully conducted in all sorts of other conditions, primarily IBDs and at least ones study apparently on IBS.

And well, yes, of course the donors should and would be tested, and this is even what DIY enema protocols do, in fact often more thoroughly as long as they're willing to spend the money for additional more thorough testing.

If you have studies for deaths, please cite them. ScienceDaily is incendiary and not particularly open or well researched and supported.

I would think that respect for the complexity of the gut would lead one to show humility and withhold judgment when there is evidence especially to the contrary, or even no evidence at all. That's the position I take, namely, that it may or may not lead to improvement or harm, that it may help or not, etc., rather than claim without evidence that "messing with gut bacteria would not address it."

The use of FMT is 'experimental' for all conditions right now, though it is more advanced in Europe and Asia, and has been in use for longer. In North America even though it's approved for C diff., it's still considered experimental and only done in very specific C diff. cases. There are whispers that it will soon be approved for IBD as well, certainly for UC, given the overwhelmingly positive evidence.

There is no clinical evidence that it works for PN and SFN, sure, but I wasn't claiming that. I also have gut issues and am open to the possibility of it working, since there's no evidence to the contrary, quite the opposite taken generally.



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Originally Posted by SylvieM View Post
Hi,

You cite studies where, as I note, it is used only for a specific bacterial infection: clostrodium difficile (CDI), which can range from causing diarrhea to a bacterial colitis (different than an autoimmune ulcerative colitis). It has been used experimentally for the latter, and other conditions as well. There are as yet no good data to support positive outcomes in experimental runs, though as I said, it may be promising. In any event, a donor must be tested to ensure they are not a carriers that may harm a recipient. Two deaths I read about were in a single, controlled study reported by ScienceDaily. I have read of others.

I know you wish to find effective treatment for your PN, as we all do, but I'll mention again, it is really necessary to know what you are dealing with. I again encourage you to find out if you have an underlying autoimmune disorder. You may then be able consider treatment s that are known to be effective for it, like IVIG.

My statement about "messing up the gut" comes from respect for its complexity and clear importance in health.

Last edited by DavidHC; 01-22-2016 at 12:40 PM.
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