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Fecal Transplant DIYers

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by SB_1108, Feb 27, 2014.

  1. SB_1108

    SB_1108

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    With all the Lipkin talk these days I thought I would chime in with my experience on DIY fecal transplants. I can understand why people do not want to discuss this topic but I'm a little surprised there aren't more people attempting DIY transplants on this forum. Not that I'm advocating people try it.

    A little history: I developed IBS in high school after about a year of tetracycline use. I had IBS-D for about ten years before I developed CFS (which coincidentally correlates with a reoccurring UTI where antibiotics were repeatedly prescribed). Once I developed CFS the IBS became IBS-A and was more debilitating and severe.

    Considering my stomach pain, food allergies, leaky gut issues, and malabsorption problems - there was no question that my bacteria was out of whack! So back in 2011-2012, I tried 13 rounds of DIY transplants (see link below). Before everyone flips out and says "how dangerous" - please know that I thoroughly researched the topic and procedure prior to attempting it and went through all the necessary precautions (like trying to get my doctor to do it for me and getting my donor tested). In addition, I was at a place in my life that the CFS pain was so severe that suicide frequently crossed my mind and if (for whatever reason) I were to have some unheard of side-effect that resulted in my death - I felt at peace with that and was willing to try anything to have some relief.

    After the first few transplants I developed die-off... Now I've done several cleanses and tried different prescriptions but this die-off did not stop for about 2 weeks straight - It was horrible and severe! So I took a break from the transplants and resumed them several weeks later. The die-off symptoms still remained but became less severe after each transplant. I never did the top-down approach, only bottom up.

    After 13 transplants, my donor and I decided to take an extended break for a while and see how things progressed. I could definitely tell a change in consistency and smell. There was definitely less abdominal pain and bloating. However, although I had experienced improvements, my IBS had not been totally eliminated and my CFS symptoms remained.

    So I decided to move on to try other treatments - I will not bore you with all the things that I tried but basically there was a lot of methylation stuff, adrenal fatigue/HPA axis dysfunction, Myers cocktail IVs and nutritional balancing - the most effective being a copper detox (see my other posts for more information on my copper issues). Reducing my copper levels really reduced my daily pain (but again some of my issues remain).

    Although my leaky gut seems much better, I still have malabsorption issues, food allergies and stomach pain and I had an organic acids test that showed that my benefical bacteria markers are still low so I've recently decided to attempt the transplants again. Especially in light of Dr. Ian Lipkin upcoming work or Dr. Thomas Borody's past CFS work. Also the fact that I've since reduced my copper burden... There are just so many reasons I want to try it again! This time I plan to try both top-down (via capsule) and the bottom-up (enema) approaches and I plan to do them multiple times. But I will use the same donor as before (just more convenient). Also I will update this thread with my results.

    Considering that I've already been down this route before, I'm not really nervous but I'm also not holding out high hopes that I will experience a cure. However I felt like the previous results were promising enough that I would like to attempt it again. In addition, I realize that what works for one PWCFS doesn't necessarily work for another and I believe there are different causes to our illness - so my results may differ from others. But if there are others out there that have gone this route and would like to share their experiences - I would love to hear from you!

    Here is my story from 2011 when I attempted the original transplants: http://www.ei-resource.org/community/groups/viewdiscussion/61-another-cfshpi-discussion?groupid=1
    Last edited: Feb 27, 2014
    Sasha, taniaaust1, Wayne and 2 others like this.
  2. knackers323

    knackers323 Senior Member

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    How does Lipkins work apply to fecal transplants? It sounds like I have missed something.

    Also do you make the capsules yourself for the top down method?

    Thanks
  3. Thinktank

    Thinktank Senior Member

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    Very interesting but quite dangerous without any filtration / testing. Have you tested your donor on parasites / pathogenic bacteria / viruses prior to the DIY fecal transplants?
    The ei-resource page is unfortunately not loading for me so my apologies if my question has been answered on the website mentioned.
  4. globalpilot

    globalpilot Senior Member

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    I hope you get benefit SB. I'm in the process right now of having 3 fecal transplants performed at a gastroenterolgists office. I'm doing them because I've done so many antibiotics over the years, I feel there must be some damage done to my flora. The GI told me that for cases like me, there is 30-60 % improvement.

    I've done a lot of research on this regarding other cases and I'm truly surprised they aren't more helpful than what I'm reading. Lots of people with IBS getting no benefit. I really thought they would be of great benefit given the research implying altered gut flora can result in systemic inflammation and this in turn can cause symptoms of IBS.

    Those with C difficile only need 1 transplant to effect a cure, but we don't know yet how many are needed to permanently change the microbiome.

    Knackers - the link is that Lipkin is studying the microbiome of CFS patients and transplants are an attempt to rebalance the microbiome.
    taniaaust1 likes this.
  5. shah78

    shah78 Senior Member

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    I love reading about this self experimentation stuff. Rock on.!My question is: unless you're getting your donation from a Kitavan, how good can the sample really be? The donor would have to be vaginally born, breast fed for as long as possible, both from a mother who was vaginally born and breast fed, having taken no antibiotics and eating a post weening diet low in preservatives, Gmo's and high in resistant starch and dirt. Where did you find such a person? Talk about a gold mine. I'll be right over to get me some as well! and believe me, I'm serious.
  6. SB_1108

    SB_1108

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    Knackers - http://phoenixrising.me/archives/21929
    I hate to give such a graphic description of how the capsules are created but basically there is a zip lock bag (that the donor fills with...) then you cut a very small, tiny hole in the corner so that you can squeeze out the... ya know. And you fill a small empty gelatin capsule. Then you take that capsule and put it inside a larger gelatin capsule. That way there is less risk of it being dissolved by your stomach acid and actually making it to your small intestines.

    Thinktank - Yes I had my donor tested. Please see this other link for the specific testing my donor completed: http://curezone.com/forums/fm.asp?i=1879208#i

    Globalpilot - How exciting! Good luck to you, I hope it works! :)
    I've seen all the people that discuss how cipro poisoned them and I honestly believe that may be apart of my problem. But regardless, I think that replacing my good bacteria would be a step in the right direction.

    Shah - Thank you for your support! A Kitavan diet is not a prerequisite for the procedure however, it would be more beneficial to have a donor that had a diet like that! My donor and I live together so her diet is pretty much the same as mine... mostly organic food - she eats pretty healthy. She has had antibiotics in the past (over five years ago) but the point is to find someone that is as healthy as possible and use them. Not sure about her delivery or whether she was breast-feed... I just know she doesn't have any chronic conditions, she feels good every day and she met the lab-work standards mentioned above.
    snowathlete likes this.
  7. SB_1108

    SB_1108

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    I just wanted to give a short update on my transplants...

    About a week or so ago I did 3 capsules and one "bottom-up approach" over the course of about 4-5 days. Its really too soon to tell if it helped or how much it changed anything because it takes at least a week or two for things to calm down. I have experienced significantly more gas/bloating and loose stools but this also happened when I did it the last 13 times I did the transplant. It definitely does feel like a battle of the bugs in my stomach - but I am not having the significant die-off symptoms that I had previously. I took another break for a week to let my system calm down a bit but I plan to resume them again soon (whenever my donor is willing).

    Globalpilot - Just wondering how you are doing? Any die-off? Any improvements?

    Just wondering if anyone has access to this entire article? I would love to read the entire thing, rather than just the abstract: http://www.eventscribe.com/2012/acg/ajaxcalls/postersinfo.asp?title=6110
    snowathlete likes this.
  8. yarnee

    yarnee

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    LOL good point
  9. globalpilot

    globalpilot Senior Member

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    I can't say I noticed any improvements but it's still too early to tell - I just finished a week ago. I was hoping they might address my upper GI problems if they were due to inflammatoin arising from the colon flora. But I have a feeling I have to address that directly - which is proving to be very difficult.


  10. South

    South Senior Member

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    I honestly get tired of hearing how 'dangerous' this is. We are talking about using material from someone who is MORE healthy and giving it to someone who is LESS healthy. If that donor had some kind of terrible parasite, it clearly isn't causing symptoms in them.

    Yes the less healthy person receiving the donation may have a compromised immune system, but how many times have we heard that most of the immune system, in everyone, is in the gut? Well, here we are putting this supposedly "risky" material from someone who is more healthy, has few to no health problems, into the gut of someone who is less healthy. And the immune system is largely based in the gut. Figure it out, mainstream medicine.

    I'm of the opinion that any risk is miniscule, even for people with ME. Compare this to the risk of side effects from many prescriptions (thousands of times more likely than any risk of harm from fecal transplant risk), yet people are so willing to pop those prescription pills without question.
    SB_1108 likes this.
  11. Thinktank

    Thinktank Senior Member

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    It's not that black and white.
    A part of CFS/ME is immune dysfunction. While the donors immune system might successfully suppress any pathogens and viruses the recipients might not. It would be a shame if the recipient acquires a new bacterial/viral infection due to the fecal transplantation which his immune system can't clear or suppress by itself.
    I'm all for n=1 and I understand the desperation when having exhausted almost every other option of treatment but the way he's doing it without proper screening is irresponsible. The labwork done is very basic.
    I sincerely hope he will succeed and not get any sicker than he already is.
    Just my 2 cents.
  12. globalpilot

    globalpilot Senior Member

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    Why would you think desperation would lead to this treatment rather than it being a logical treatment after years of antibiotics ?
    SB_1108 and South like this.
  13. SB_1108

    SB_1108

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    I reviewed multiple published, peer-reviewed studies on FMT and performed the identical lab tests they used for my donor testing, which included:

    C Diff - Toxin A and Toxin B (Cytotoxin) detection
    Enteric Bacterial Pathogens - Selective/Standard Stool Culture
    Ova and Parasites - triple test
    Hepatitis A - HAV antibody (IgM and IgG)
    Hepatitis B - HBV (Antibody to hepatitis B surface antigen, antibody to hepatitis B core antigen)
    Hepatitis C - HCV antibody (RIBA-11)
    HIV-1 and HIV-2 - EIA
    Treponema Pallidum - Rapid Plasma Reagin Test (syphilis)
    Human T-lymphotropic Virus

    I also reviewed other DIY protocols just to compare my protocol with others.

    While I'm sure you could perform many other tests, I don't think that qualifies me as "irresponsible" - but regardless, this was not the purpose of my post. I was just hoping to discuss other individual's experiences with the transplants.
  14. SB_1108

    SB_1108

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    snowathlete likes this.
  15. knackers323

    knackers323 Senior Member

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    Last edited: Mar 14, 2014
  16. SB_1108

    SB_1108

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    Knackers - Having the procedure done via colonoscopy would definitely have its benefits if reaching the entire digestive tract is what you need. But researchers (cdiff) have stated:

    The capsule approach has also been proven to be effective:
    Considering that c diff is condition of the colon and the ingestion of the gelatin capsules has cured the infections, it seems like it is capable of traveling the entire length of your intestines, even bypassing stomach acids (if its double-encapsulated).

    Just a status update on my situation - I've only been able to do two more transplants since my last post. So since my initial 13 in 2011, I've had 5 more (3 top down, 2 bottom up) for a grand total of 18. I plan to continue on over the next few months… Its still too soon to report any changes, but no significant die off symptoms from these five.
    Last edited: Mar 15, 2014
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  17. SB_1108

    SB_1108

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    I just wanted to give an update on the DIY transplants. I believe the last one I did was the last time I posted. So I did a total of 18 with 5 being in the last month (and the other 13 being several years ago). After the 13 I did back in 2011, I did notice some improvements. However, after the last 5… I have not noticed any improvements/changes. My donor was disappointed with the lack of progress and doesn't really want to provide me with anymore. So I don't know that I will be doing it again until I convince otherwise or find a new donor.

    I don't want this to deter others that were considering the FMTs because I do feel like it was helpful… And maybe if I had continued on daily for many months, maybe then I would have noticed the improvements I was searching for - but unfortunately I can't continue them at this point.

    I don't regret the FMTs because I honestly believe they were a step in the right direction! Maybe there is another component that I am missing? I know leaky gut treatment with l-glutamine was very helpful for me… so maybe there is something else I am missing in this puzzle.
    taniaaust1 and snowathlete like this.
  18. Hip

    Hip Senior Member

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    I can list a whole set of supplements and drugs that I found very beneficial for my IBS-D, but perhaps one of the most unusual and interesting improvement in my IBS was achieved simply by removing the chloramines (not the same a chlorine) from my tap drinking water. This had a very significant effect on ameliorating my IBS, and other people who tried this also reported the same benefits. Chloramines in drinking water have a bad effect on the gut, but are easily removed using simple chemical neutralizers added the water.

    More info in this thread:

    IBS Improved After Removing Chloramine From My Drinking Water
    Asklipia, taniaaust1 and snowathlete like this.
  19. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I have also had success with this. Not a single case of urgency since I started six months ago. Effects were within 24 hours. I was having the urgency problem every day. No other impacts tho, eg no improvements to fatigue or cognitive problems, although other improvements might be a long time in coming.
    Hip likes this.
  20. Hip

    Hip Senior Member

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    Yes, same with me. Noticable and welcome improvements in my IBS-D, but no apparent improvements in fatigue or cognitive problems. I have been chloramine-free for just over a year now.

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