Fecal Microbiota Transplantation Patient Views

Hey guys, me again ha... has anyone had a fecal transplant? If so have you seen improvement of all our any of your symptoms?

Tom Borody talks at the bottom of this article. Fecal transplant for Inflammatory Bowel Disease also mentioned here, scroll down. ScienceDaily (Oct. 31, 2011) Growing evidence for the effectiveness of fecal microbiota transplants as a treatment for patients with recurrent bouts of Clostridium difficile (C.difficile) associated diarrhea is presented in three studies -- including a long-term follow-up of colonoscopic fecal microbiota transplant (FMT) for recurrent C. difficile Infection that included 77 patients from five different states -- unveiled at the American College of Gastroenterology's (ACG) 76th Annual Scientific meeting in Washington, DC.

In a fourth study, investigators from the Centre for Digestive Diseases in Australia explored fecal bacterial transplantation as a treatment for Inflammatory Bowel Disease. While this is a new area of research, results of this study show success in treating IBD when the fecal transplant is done recurrently. The first study, "Long-term Follow-up of Colonoscopic Fecal Microbiota Transplant (FMT) for Recurrent C. difficile Infection (RCDI)," included 77 patients from five different states (RI, NY, OK, CA,WA) who previously had a colonoscopic fecal microbiota transplant at least three months ago for recurrent C. difficile infection, and found that FMT was successful in 70 out of 77 patients (91 percent) who were on average elderly, debilitated and had undergone multiple failed treatments, including antibiotic and probiotic therapies. Additionally, in six of the remaining seven patients, a single two-week course of vancomycin or a two-week vancomycin course plus one further FMT resulted in cure (98 percent). "Many of these patients we followed up with had been ill for a long time, but once they underwent the fecal microbiota transplant their response to the treatment was quick and their symptoms improved on average in about six days," said investigator Mark H. Mellow, MD, FACG, of INTERGRIS Baptist Medical Center in Oklahoma. The average duration of illness for these patients was 11 months, but after the procedure patients continued to improve and --without subsequent antibiotic treatment--did not have a recurrence of C. difficile infection during follow-up (on average , 17 months), according to Dr. Mellow and his team of co-investigators which included a leading pioneer of fecal microbiota transplantation, Lawrence J. Brandt, MD, MACG, of the Albert Einstein College of Medicine in New York. Results from a meta-analysis by researchers at the University of Toledo Medical Center were also unveiled, providing further evidence of the effectiveness of fecal microbiota transplantation. "Fecal Bacteriotherapy Works for Clostridium difficile Infection -A Meta-Analysis," reviewed the cases of 148 patients who had received fecal transplants for C. difficile infection. Follow-up ranged from 10 days to 62 months after the transplant, with an average follow-up of 1 year. Fecal transplant had an overall success rate of 85.4 percent, according to researchers, who also concluded that the procedure was a safe and effective treatment option for C. difficile infection. Clostridium difficile is a bacterium that causes infection leading to diarrhea and is most often related to antibiotic use during medical treatment. A major cause of morbidity and increasing health care costs among hospitalized patients, C. difficile infections have dramatically increased in recent years, with 500,000 cases in the United States annually and approximately 15,000 deaths each year, according to the U.S. Centers for Disease Control & Prevention. Up to 25 percent of patients will have a recurrence of C. difficile infection, and a proportion will be refractory to antibiotics. C. difficile is especially dangerous for patients with weakened immune systems such as the elderly and those with Inflammatory Bowel Disease (IBD). Therapies for this difficult-to-treat subpopulation include antibiotics, probiotics, toxin-binding medications, active vaccination, intravenous immunoglobon, and fecal microbiota transplant, for which the evidence has been mounting as an effective rescue for recurrent and refractory cases of C. difficile associated diarrhea. "While the concept of fecal transplantation may sound unpleasant to some, patient acceptance of this treatment is growing, especially when they have been suffering for months with recurrent C. difficile," said Dr. Mellow. "When we asked patients in our study about their choice of treatment if their infection recurred, 53 percent said fecal transplant would be their first choice for treatment." In a related study also unveiled at the ACG meeting, "Clostridium difficile Infection in Ulcerative Colitis: Increased Risk of Colectomy and Postoperative Infectious Complications," researchers from the University of Calgary found that patients with ulcerative colitis who were diagnosed with C. difficile were significantly less likely to respond to medical treatment and as a result require a colectomy when they diagnosed with C. difficile in the hospital or within 90 days of admission. In addition, patients with ulcerative colitis who had concomitant C. difficile, preoperatively were at a higher risk of infectious complications following a colectomy. Researchers Find Fecal Microbiota Transplantation Effective For Treatment of IBD With the growing success of fecal transplantation for C.Difficile, researchers have started to explore the effectiveness of this procedure for other serious conditions, such as Inflammatory Bowel Disease (IBD). A second study, "Reversal of Inflammatory Bowel Disease (IBD) with Recurrent Fecal Microbiota Transplants (FMT)," reports successful treatment of severe mixed IBD using recurrent fecal microbiota transplants in three patient cases. In Case 1, a 19-year old female with an 11-year history of severe IBD and who presented with worsening symptoms including bloody diarrhea and inflamed, ulcerated mucosa , and was considering a colectomy, experienced symptom improvement within several days after receiving FMT. She underwent FMT initially via colonoscopy in July 2009 then by seven daily rectal FMT and 26 weekly FMT's. Follow-up colonoscopy revealed no gross inflammation or edema, with the patient remaining clinically well. In Case 2, a 23- year old male with a five-year history of steroid and anti-TNF? refractory ulcerative colitis presented with bloody diarrhea more than 20 times per day, anal fissures, severe abdominal pain and joint pain. Pre-FMT colonoscopy -- showed severe disease of the left colon with marked cecal inflammation. He underwent daily rectal FMT for the first month, followed by infusions of lessening frequency until he reached 1 FMT/6 weeks. He reported resolution of bleeding 1-2 weeks post-FMT, and formed stool at 1 month post-FMT, resumed work, study activities and regained weight. Colonoscopy at one year showed no histological inflammation but occasional pseudopolyps in the cecum and ascending colon. In Case 3, a 57-year old female with a nine- year history of 5-ASA antibiotics, probiotics and immunosuppressant refractory ulcerative proctitis in spite of treatment. After training in our clinic, she performed 69, initially daily, then weekly rectal FMT with virtually immediate resolution of diarrhea, bleeding and mucus. Follow-up colonoscopy showed no visible or histological inflammation and she has remained off all therapy for the last four years. FMT may act as an antagonist to etiological infective agent(s) and aid in re-establishing depleted bacterial species, thereby reversing IBD, according to researchers from the Centre for Digestive Diseases in Australia. Commenting on the cases of FMT in IBD, lead researcher Thomas Borody, MD, PhD, FACG, said, "the rapid response of FMT and lack of adverse effects make FMT a viable option for treatment-refractory patients and is certainly an added option for those facing colectomy."

My neurologist called me yesterday to discuss my results and proposed me the fecal transplantation. He said: "First we empty your bowels and then we reintroduce the transplant.' A few questions remain: - My daily headache (since the age of 6) gets worse when I eat something "wrong". I wonder if fecal transplant could solve that problem. - I wanted to start AB to eliminate a chlamydia pneumonia infection (protocol >1 year). Would a healthy gut make AB treatment unnecessary to silence bacterial infection? - What would be the impact on methylation or partial methylation block (as proposed by Rich von Konynenburg) - Gut bacteria have an impact on your personality (introvert - extravert) I read once. Would a fecal transplant be able to change your behavior?

I had an FMT just before my COVID-19 infection due to cdiff and it worked but my diahhrea came back after COVID.

The critical part of that sentence is "my situation". ME is such a variable disease, and what works great for one person doesn't work on another, or even makes their ME worse. You changed your microbiome and noticed a big improvement. I've varied my diet and done other things that should have significantly altered my microbiome, but saw no changes in my symptoms. By your hypothesis, taking antibiotics should make ME symptoms much worse, but that doesn't seem to be the general observation. My guess is that the microbiome will have a strong effect on ME symptoms for some people, but not for the majority. If someone tries something that affects the microbiome and notices an effect, they should pursue that line of experimentation. If they don't notice an effect, they're probably in the group that doesn't have a strong microbiome/ME link. I've reported two treatments that work very well for me, and continue to work reliably...but no one else has reported any significant improvements from them. FMTs might have worked well for you, but there's no guarantee that they'll do much for anyone else's ME. That's just the reality of ME.

i put this below post on it's own thread, too, on this forum. (http://forums.phoenixrising.me/index.php?threads/fecal-transplant-study-58-70-recovery-rate.20430/) but i'll post it here as well. it is an October 2012 study. WHAT AN AMAZING SUCCESS RATE: 58-70%!? -- rrrr​ This is an Australian Fecal Transplant study that had a 58-70% recovery rate for ME/CFS!!! For treating CFS (published oct 2012) http://www.eventscribe.com/2012/acg/ajaxcalls/postersinfo.asp?title=6110 Bacteriotherapy in Chronic Fatigue Syndrome (CFS): A Retrospective Review Conclusion: Bacteriotherapy achieves initial success rate of 70% in CFS and 58% sustained response. This result is favourable when compared with current therapies where fewer than 10% recover fully and a further 10%-20% worsen during follow-up1. Given that manipulation of the colonic microbiota improved CFS symptoms, bacteriotherapy for CFS warrants further investigation. Furthermore, the pathophysiology of CFS could be in part explained by enteric derived toxin-releasing bacteria capable of producing systemic effects.​

It is certainly complicated. I tend to agree with @Wishful that microbiome could have a big effect in some of us, but not be the ultimate answer for others. In this story is described a woman who lives without a large intestine, which is where the majority of the good bacteria resides. Without trying to downplay her serious condition, it looks like she hasn't developed anything like ME/CFS despite having no colon. The second case I think of is the one of a patient, who lost his ability to eat and was first fed intravenously and later by a tube through his stomach, if I understood it correctly. One would think that based on the microbiome changes, he would have improved/worsened after he was fed intravenously and no food was feeding his microbiome, but as far as I understood it, it made no difference to his severe condition. Having said that, undoubtedly there is an incredible upside and potential with FMTs. It is just frustrating that there doesn't seem to be one answer that works for everyone, but on the upside, we have CCI surgeries, FMTs, Rituximab, etc. that seem to help at least some of us.

I've read an article that in one study for Crohn's disease, they found out that most people who got a remission, got the FMT from the same single donor! They should definitely test that in all studies in FMT and keep record of which donor helped which disease, because it could well be that there is just a perfect donor for every disease or just a perfect donor in general. I thought I had a pretty perfect donor, but I haven't felt much effect yet from my FMT, but I'm keeping my fingers crossed!

Hi everyone, fecal transplantation has been used in Australia since the 90s to treat ME/CFS, but I never heard about fantastic results, only moderate results. This was from talking to Aussie ME/CFS docs, so I don't have any references. Does anyone know if any of this was ever published back then? Bye, Jordan

It seems to work very well for C. difficile:

More than 90 per cent of C. difficile patients are cured by fecal transplants, studies suggest

And:

Fecal transplants have become the first-line treatment for chronic recurrent C. difficile in Scandinavia. As well, more and more doctors are using it in the United States.

Calgary physician Dr. Tom Louie, head of infection control at Foothills Hospital, is one of the few physicians in Canada who treats patients with chronic C. difficile with fecal transplants, or fecal therapy. He has done 38 procedures to date.

Another doctor from Canada has published a study about it: http://www.ncbi.nlm.nih.gov/pubmed/20117243. The quotes above are from this article: http://www.cbc.ca/news/health/story/2007/11/13/fecal-transplant.html

Point is: Although not very common, it's a procedure which seems to be at use in various countries. My guess is that this is more harmless than many other experimental CFS treatments. The procedure is being used many places, for Clostridum infections.