Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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DIY Fecal Transplant...would you try it?

Discussion in 'General Treatment' started by AdamS, Jun 29, 2017.

  1. AdamS

    AdamS Senior Member

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    Just thinking about fecal microbiota transplants creeps me out a bit, but after reading this story on Reddit of a guy who apparently cured his CFS & IBS by doing a DIY fecal transplant it got me thinking...perhaps it's worth a try.

    https://www.reddit.com/r/cfs/comments/67udpu/fmt_has_completely_cured_my_ibs_and_cfs_could_be/

    Providing one can find a healthy donor, the risk to reward ratio seems relatively good at first glance, but there also seems to be a high chance of relapse...I wonder why that is?

    Perhaps successful transplants can provide some form of short term immunologic, hormonal and metabolic homeostasis in the host which then gets overridden eventually if one overdoes it.

    Anyway...having read the story, would you give it a shot?
     
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  2. Hugo

    Hugo Senior Member

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    Sure why not, but I get the feeling its not the answer for me.
     
  3. Murph

    Murph :)

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    Here's a still more recent reddit thread of a guy who tried one and got a very transient effect

    https://www.reddit.com/r/cfs/comments/6hbt9q/planning_to_try_fmt_this_weekend_any_advice_or/

    which seems more representative of their general usefulness to me.

    Re: FMT probably the world's foremost clinician is Thomas Borody. He did that recent study where FMT reduced autism symptoms in children. His protocol is not just a single infusion one afternoon. He does a long course of antibiotics, followed by fasting and that laxative stuff you get to clear yourself out for a colonoscopy, then regular daily doses of FMT for weeks, delivered orally (it's not raw matter!).

    As far as a home version of that protocol goes, you could certainly replicate the laxatives and the fasting to give any transplant the best chance.
    --
    FULL PROTOCOL from paper:

    The MTT treatment protocol consisted of four key parts: (1) oral vancomycin, (2) MoviPrep, (3) SHGM, and (4) Prilosec. As summarized in Fig. 1, the treatment began with 14 days of oral vancomycin, a non-absorbable broad spectrum antibiotic that stays in the GI tract. A 14-day course of vancomycin was used to ensure that pathogenic bacteria were profoundly suppressed. Prilosec (an acid pump inhibitor) was administered starting on the 12th day of vancomycin, and continued until the end of the lower dosage of SHGM in order to reduce stomach acidity and increase the survival rate of SHGM through the stomach.

    On day 15, parents administered MoviPrep, a drink that flushes the bowels, to remove most remaining gut bacteria and vancomycin. To enhance its effectiveness, a fasting period of 1 day was implemented during which participants were only allowed to consume clear liquids (children under 12 years were allowed a light breakfast), and then at 4 pm and 8 pm, parents administered the two doses of MoviPrep.

    On day 16, the participants began either oral administration of SHGM (2.5 × 1012 cells/day) mixed in a chocolate milk, milk substitute, or juice for 2 days (divided into three daily doses), or a single rectal dose of SHGM (2.5 × 1012 cells), given similar to an enema. The rectal dose was administered slowly over 1 h, and participants remained prone for at least several hours, and delayed defecation for at least several hours.

    The rectal dose was administered under the direct supervision of the study physician, and the first oral dose was similarly administered in the presence of the physician. Participants were randomly assigned to either the oral or rectal route of administration. If one administration route was not tolerated, or if the family preferred the other route, then participants had the option of trying the other route.

    For participants who received the major initial rectal dose, they waited for 1 week (so the effect of the rectal dose could be evaluated by itself) and then received a lower oral maintenance dose (2.5 × 109 cells) for 7 weeks. In contrast, for participants who received major initial oral doses, they received a lower oral maintenance dose (2.5 × 109 cells) for 8 weeks, directly after the major initial oral dose. The lower maintenance SHGM doses were self-administered orally every day up to the end of week 10. After treatment was stopped, participants were monitored for another 8 weeks.
     
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  4. gabriella17

    gabriella17 Senior Member

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    I would, I'll try anything. I do wonder though, how it is that the person who posted on reddit was able to get such excellent results after one transplant? Is 8 weeks of daily administration really necessary?
     
    AdamS likes this.
  5. Alvin2

    Alvin2 If humans were rational...

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    My gut tells me this is not a good idea :woot:

    Frankly this is highly risky, it may not seem like it but you could end up with a lot of diseases or weird symptoms like obesity, auto immune reactions that could result in death, personality changes, and so forth.

    I know we are desperate but potentially making ourselves worse can be the result when you try high risk procedures whose mechanism of action is not well understood.
     
  6. Esther12

    Esther12 Senior Member

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    Not read this article, but it made me think of this thread:

    https://www.buzzfeed.com/nidhisubba...nsplant-clinic?utm_term=.fe5kn9Eg4#.awPQnvbDZ
     
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  7. barbc56

    barbc56 Senior Member

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    :jaw-drop::woot::wide-eyed:
     
  8. Alvin2

    Alvin2 If humans were rational...

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    This article raises some interesting points, and it shows a flaw in todays medical research, when a new avenue is identified progress in it is incredibly slow. This happens in other areas like ME/CFS research, in Vitamin K2 research and so forth.
    However i still think the risk is huge and uncharted, but i do support more money for research starting ASAP and more of an open mind. Lets not forget medical research is sometimes a risky business, but there is a huge difference between reasonable risk and reckless, and these DIY people are mostly being reckless and yet again its a new panacea for almost any condition [facepalm]
    I still can't understand how people can't figure out that every new treatment especially in alternative medicine supposedly treats almost any malady and almost none of them pan out. Yet the next miracle treatment gets the same fawning for outlandish claims. Learn from experience people... :bang-head:
     
  9. maybe some day

    maybe some day Senior Member

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    Sounds like a crap shot to me..






    :)
     
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  10. Alvin2

    Alvin2 If humans were rational...

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    I guess head and shoulders shampoo was too cost effective to be a viable contender [facepalm]
     
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  11. Bansaw

    Bansaw Senior Member

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    The donor is important. The Indian guy in the Reddit post took stool from his brother. Seems like a perfect match for him. Same parents, same environment, similar genetics etc. It would have to be someone who is very healthy and preferably not taken many antibiotics themselves.
     
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  12. TiredSam

    TiredSam The wise nematode hibernates

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    I don't take shit from anybody :mad:
     
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  13. arewenearlythereyet

    arewenearlythereyet Senior Member

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    From my point of view ....Definitely not.....we have only just touched the tip of the iceberg on our knowledge on this. we don't even know why things are imbalanced (permanent or temporary) or precisely what organisms by species are involved (even if they are the same for everyone) or what their affect is on our biochemistry or what synergistic reactions take place or the role of opportunistic pathogens. It's very much in the early stages and it's equally likely that shoving someone else's poo up your bum will cause more harm than good. Think we need to wait a good 10 years of solid research before we know a fraction of what we need to know to make this decision.

    I suspect that the poo transplant treatment will turn out to be a flash in the pan.
     
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  14. TrixieStix

    TrixieStix Senior Member

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    Having been hospitalized in the ICU as a result of a life threatening C. Difficle Colitis infection, I learned about fecal transplants as my doctors said it would be the next step if I relapsed (I did not thankfully). From what I've learned about fecal transplants I would NOT consider doing it DIY.
     
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  15. Alvin2

    Alvin2 If humans were rational...

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    Thats the thing few people consider, medication is something that changes the body, the goal is for it to be in favourable ways but almost all medicines have side effects and its always a juggling act of good vs bad effects before a drug is approved. Thats why medical drugs need research and development and testing because its too easy to invent snake oil, its too easy to make outlandish and ridiculous claims, its easy to sell poison, and seemingly billions of gullible people fall for it [facepalm]

    No one wants to admit the risks of a medical treatment, everyone only wants to make claims about how great it is...
    Treating dandruff, thats ridiculous, life threatening infection changes the calculus and even then it should be the last and not first resort. I more or less agree with the FDA, it should not be commonly used yet because we know less then the tip of the iceberg of what it is, what it does or how it works. What we need is research money spent wisely to get up to speed quickly because it is true that serious conditions need treatments developed ASAP.
     
  16. Hugo

    Hugo Senior Member

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    The research is on clostridum difficile and if you have problem with overgrowth with this bacteria it could be an effectice treatment. https://www.ncbi.nlm.nih.gov/pubmed/24440934

    To be honest im not that scared of a fecal transplant. I known about this treatment for ten years now and I followed the research in this field. I also know one who has been treated with fecal transplant. Ofcourse its important that its someone who is tested and dont have medical problems. In karolinska (hospital in sweden) they done research on well tested fecal from one person long time ago (over 20 years) grown in a lab.They deliver the fecal through a probe. Its suppose to be more clinical when its delivered through a probe in the nose (and probably less revolting for clinicans to handle it). Dont know about that ;-). Still ofcourse theres a lot of uknown in fecal bacteria and symbiotic effects between different bacterias, that we dont know anything about.

    But for me to do a fecal transplant I would need to have severe IBS or something of that effect. To just randomly try it against ME or lyme seems illogical and to risky.

    Theres a lot of discussion regarding everything with gut flora. Probiotics is not considerd anything more than hoax from the medicall society where I live. Still it is pretty clear that it saved me when I did an antibiotic course. Even though there are research that shows probiotic have good result for some gut problems there is not any study big enough that it could be considered a viable treatment.
     
    Last edited: Jun 30, 2017
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  17. Alvin2

    Alvin2 If humans were rational...

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    I'm not saying for a life or death situation you should die instead of trying the risky treatment, i am saying dandruff is preferable to the risky treatment, and there is an effective and low cost treatment available that carries none of the fecal transplant risks at all.
    I do think microbiota deserves a lot more research then is presently happening, there is much valuable knowledge to learn and convert to treatments.

    Fear is not the problem, its risk, i can choose to ignore the risk of smoking cigarettes, but it does not change the health effects of smoking them

    This is true, i wrote up a reply about mainstream medicine dismissal in a post recently, this is another example to add to the list :bang-head:
    http://forums.phoenixrising.me/inde...esting-is-it-quakery.48770/page-3#post-868997
     
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  18. Hugo

    Hugo Senior Member

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    True, but I never heard any health reasons to try smoking. And this is more of an uknown than smoking that is very well documented.
     
  19. Alvin2

    Alvin2 If humans were rational...

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    A trip down memory lane :woot:
    [​IMG]
    [​IMG]
    [​IMG]

    I agree which is why i would not be interested in a fecal transplant until more is known and if its actually likely to treat some condition i have.
    Its certainly possible that a bacteria is creating a molecule that ends up in our blood and causes the block Dr Davis found. If it were identified and found susceptible to an already FDA approved drug we would have a reasonable treatment thats already tested, approved and on the market. Another possibility is if a drug is developed for it it would have to be tested and FDA approved before it could be bought. Either way we are treating the cause with something shown by scientific research to be effective and hopefully at low risk.
    Conversely we could try a fecal transplant not yet knowing whats causing our condition at all, it fails because its actually autoimmune or genetic and end up with other problems we never envisioned, and the whole time we were wasting our efforts in the wrong direction. This is why i don't think this is a good idea, though more research could make it a good idea
     
    Last edited: Jun 30, 2017
  20. Hugo

    Hugo Senior Member

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    ;-) Sure but I guess the discussion is now (or recent history) not then, at one time they thought mummypowder was the best treatment for everything. Still it shows how times are changing.

    No I wouldnt try it for something else than gut problems. The one I know that got the treatment had severe IBS and knowing how that was I would try it to.
     

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