SB_1108
Senior Member
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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
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
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