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Fecal Transplant for Autoimmune Disorder - where is this being done?

by (468)
Updated September 16, 2014 at 8:02 PM
Created January 25, 2013 at 3:35 PM

I have Ankylosing Spondylitis that began about 8 years ago with chronic constipation (that I still suffer despite a thousand remedies/treatments). I've read so much about the success of fecal transplants, and this makes tons of sense for spondylitis since the theory is that we have Klebsiella bacteria in our colons.

Who is doing fecal transplants in the U.S.? I would prefer someone in the southeast (I live near Atlanta), but I know I may need to travel for this since it's still so experimental.

Thanks for any advice. I'm wondering if this could be a potential cure for many people suffering from this awful spinal disease.

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5640 · February 09, 2013 at 5:51 PM

lindy, i'm sorry it's been hard. i know how you feel. i'm going through the same thing right now. i've been in the hospital all week with c diff and can't get any doctor to agree to FT. im not responding to flagyl or vanco and they just said "well, you could need to be on them for months." im like uhhhh please no!!!!

B1076248dde479773e75044818e1878c
468 · January 26, 2013 at 1:57 AM

GI docs know nothing about this procedure unfortunately.

B1076248dde479773e75044818e1878c
468 · January 26, 2013 at 1:55 AM

Another response from Mayo Clinic: "We at Mayo are working to develop a protocol to offer FMT for other illnesses where there is some scientific rationale for benefit and no harm in the context of trying to collect clinical and microbiological data in support of these “alternative” approaches but are not there yet."

B1076248dde479773e75044818e1878c
468 · January 26, 2013 at 12:28 AM

It is turning out VERY hard to get this done...despite all the paleo world recommending it. Here's one reply I got today: "I do not think there is anyone who would do a fecal transplant for AS at this time, even though you might be correct in your assumption." This was from a main player in the field in the studies I've been reading. I'm now trying to get in touch with the doctor in Australia, Borody, who has found links with autism, rheumatism, and has a case of Parkinson's that was reversed after FMT. Surely, someone will test this with an autoimmune case? Why not try?

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4 Answers

8ed93bc132d9ce545ae644d6438e6578
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0 · June 13, 2013 at 1:32 PM

There are tutorials on how to do it yourself online. The trick will be getting a donor :-) .

089dd41b18fbb95ebb5347cded708d98
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5640 · January 25, 2013 at 9:56 PM

i think it will be very difficult to find a doctor to do it for AS. the only illness i have seen it being done for is C. Diff.

i have autoimmune ulcerative colitis and i asked multiple doctors about doing FT. i ended up doing it at home with enemas. it didn't help, but i think it would be better if i could get it down with a colonoscopy. the enemas don't reach high enough into the colon so it won't allow you to repopulate your whole gut.

good luck in your search! i'd say if you have a chance of anyone doing it, dr. mark davis in oregon would probably give it a whirl. he charges about $7,000 for enema treatments if you don't want to do it at home. he has not started doing it through colonoscopy yet.

089dd41b18fbb95ebb5347cded708d98
5640 · February 09, 2013 at 5:51 PM

lindy, i'm sorry it's been hard. i know how you feel. i'm going through the same thing right now. i've been in the hospital all week with c diff and can't get any doctor to agree to FT. im not responding to flagyl or vanco and they just said "well, you could need to be on them for months." im like uhhhh please no!!!!

B1076248dde479773e75044818e1878c
468 · January 26, 2013 at 1:55 AM

Another response from Mayo Clinic: "We at Mayo are working to develop a protocol to offer FMT for other illnesses where there is some scientific rationale for benefit and no harm in the context of trying to collect clinical and microbiological data in support of these “alternative” approaches but are not there yet."

B1076248dde479773e75044818e1878c
468 · January 26, 2013 at 12:28 AM

It is turning out VERY hard to get this done...despite all the paleo world recommending it. Here's one reply I got today: "I do not think there is anyone who would do a fecal transplant for AS at this time, even though you might be correct in your assumption." This was from a main player in the field in the studies I've been reading. I'm now trying to get in touch with the doctor in Australia, Borody, who has found links with autism, rheumatism, and has a case of Parkinson's that was reversed after FMT. Surely, someone will test this with an autoimmune case? Why not try?

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2496 · January 25, 2013 at 9:06 PM

Good question! I don't have an answer but you might want to ask a GI doctor. Fecal transplants are used for folks with C. difficile infections, at least when all other options prove ineffective. I should think that fecal transplants are done somewhere in greater Atlanta. But convincing a doctor to give you a transplant is a different matter.

It is a shame fecal transplants are not done more often. Hopefully this will change.

_Lazza

B1076248dde479773e75044818e1878c
468 · January 26, 2013 at 1:57 AM

GI docs know nothing about this procedure unfortunately.

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