I just tested positive for c. diff again for the countless time. I really believe that I may have an infection in my small intestines as FMT's and Vancomycin have not been effective, Dificid has been the only thing that has shown any results. Also, my issues have been more upper GI in nature...still have D but cramps, pain, bloating, are all higher in my abdomen and I get sick almost immediately upon food entering my system.
I was reading an article on treating c. diff infections of the small intestines awhile back and there was some research that pointed to Rifaximin being more effective than Vanco or Dificid in these cases. I can't find the research however and wondered if anyone knew of research that had been done along these lines.
Rifaximin with small intestinal c. diff infections
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Re: Rifaximin with small intestinal c. diff infections
Oh, wow! I am so sorry, skizamii. : ( That is just wild! I think I remember you saying you went to Mayo for the last FMT. Did they say what could've made it start to activate again? You had a negative PCR shortly after, right? Do they have a c diff expert there who can help kick this for you?
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Re: Rifaximin with small intestinal c. diff infections
They put me on Flagyl again and said if that doesn't work then come back for another FMT. I'm not going back for another FMT, I've had 3 and none worked. The definition of insanity is to keep doing the same thing with different results.
I really think I have an infection higher up...they are much more rare but are harder to treat. I just can't find that article on how people are treating c diff infections in the small intestines.
I really think I have an infection higher up...they are much more rare but are harder to treat. I just can't find that article on how people are treating c diff infections in the small intestines.
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Re: Rifaximin with small intestinal c. diff infections
That's interesting since Flagyl is systemic and wipes out more good gut flora than Vanco or Dificid. How are you feeling with your symptoms? I recall a few folks here doing the FMT "top down" via pills or endoscopy - does Mayo think that method will reach the small bowel better than colonoscopy? I think some places (Dr. Shepherd at RDS Infusions in Tampa) does the FMT multiple ways for stubborn infections and has, I believe, only one failure to date.
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Re: Rifaximin with small intestinal c. diff infections
I was thinking of the pills as well. I had terrible SIBO and small intestinal issues after c diff and I always thought mine was in the small intestine as well. I took Xifaxan for the SIBO and it did help me. They used to give it as a chaser to vanco and it helped me a lot more than vanco alone, but I still relapsed. I had to do more than one FMT, but I found when I did home enemas, they helped more than a one time FMT via colonoscopy. The first FMT I had was an NG transfer and it did not help me. I would check into the pills.
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Re: Rifaximin with small intestinal c. diff infections
One of the doctors I talked to about FMT said that he would put part of the transplant into the terminal ileum because "c-diff likes to hide in the small intestine." He did the infusion via colonoscopy. I opted for another doctor who did not put the transplant into the small intestine because of the possibility of it causing SIBO.
I hope the Flagyl works for you, but the Xifaxan might be worth trying if it doesn't.
I hope the Flagyl works for you, but the Xifaxan might be worth trying if it doesn't.
Bea
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Re: Rifaximin with small intestinal c. diff infections
Has your Dr considered the possibility tgat something other than c.diff is causing the ongoing problems?
Something Drs are far too willing to send you away with more meds just because they have put a lable on your problems.
If treatment does not work then it might be time to start at the beginning again and reinvestigate whats wrong.
Flagyl will destroy any good flora that remains after an FMT.
I have never heard of a Dr going back to using flagyl after FMT has been tried.
It should resolve the D as it will still kill off the active bacteria but relapsing is almost a certainty.
Something Drs are far too willing to send you away with more meds just because they have put a lable on your problems.
If treatment does not work then it might be time to start at the beginning again and reinvestigate whats wrong.
Flagyl will destroy any good flora that remains after an FMT.
I have never heard of a Dr going back to using flagyl after FMT has been tried.
It should resolve the D as it will still kill off the active bacteria but relapsing is almost a certainty.
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Re: Rifaximin with small intestinal c. diff infections
A guy I messaged on Facebook had two failed colonoscopy FMTs (the mixture came out almost right away after he woke up from the procedures) but a single round of the FMT pills wiped it out. He is just over a year cleared now and he said he can eat whatever and the result was pretty unbelievable. Might be worth a shot if they think it's the c diff that's causing your symptoms.
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Re: Rifaximin with small intestinal c. diff infections
I have read cases like that too. I know they do the pills in Oregon and in Tampa, Florida. OpenBiome has capsules too, but only for compassionate use or research at the present time.
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Re: Rifaximin with small intestinal c. diff infections
I forgot about Oregon having them too. The guy I talked to had it done at Cleveland VA Medical Center but I think Boston does them too as well as Dr. Hirsch on Long Island and Dr. Shephard at RDS Infusions in Tampa.
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Re: Rifaximin with small intestinal c. diff infections
I'm not sure this is as specific as your case, but...I had a mild case of cdiff about a year ago, and my doc put me on rifaximin and nothing else. The first time was for three days - and, lo and behold, most of the worst symptoms disappeared. Everything was still not exactly right so, after a few weeks, she gave me another three-day round. That did the trick, and I have been free of cdiff ever since. I still have mild gastritis from time to time post cdiff, but I would say I am pretty much 100%. Many people were surprised that she did not follow the usual protocol, but she is - thankfully - also an infectious diseases doc and I think she knows more than the average doc about how this all can work.
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