I maybe relapsing after FMT?

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Ali-Mar
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Re: I maybe relapsing after FMT?

Postby Ali-Mar » Tue Jul 28, 2020 3:49 pm

My ID dr suggested taking the Stool calprotectin level test, to test if I still have C Diff. He believes a very high level is indicative of CDI and slightly high means my symptoms are IBS. Has anyone heard of this test?

My GI Dr prescribed Bentyl 10 mg for me to take for PI-IBS. for the abdominal pain. Is it safe to take?
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

beth22
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Re: I may be relapsing after FMT?

Postby beth22 » Tue Jul 28, 2020 8:21 pm

Years ago I took Bentyl and it didn't do anything to help me. I don't remember having any side effects, but no help either.

NanciT
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Re: I may be relapsing after FMT?

Postby NanciT » Wed Jul 29, 2020 10:39 am

I tried Bentyl in 2014/15 and found it did not help much. I then went on to Hycosamine which I still use now that I am dealing with Post IBS from my most recent CDIFF. I take it as needed, it works quickly. Side affects are dry mouth

NanciT

Ali-Mar
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Re: I maybe relapsing after FMT?

Postby Ali-Mar » Wed Jul 29, 2020 5:59 pm

I am 15 days post-FMT and 14 days post last pill of Difcid. My bowels are not normal formed, 1-2 bm per day soft/loose ( bristol 5). I don't have an active C Diff, but I am still having a lot of abdominal pain, all day every day. The pain moves around, sometimes is at lower udner navel, sometimes is around the navel and sometimes on the side of body where the colon is, a lot of bloading and pressure. I am still on bland diet and reduced my fiber intake

I know we are not supposed to test for a cure... but I wanted to see the results as a point of reference going forward. This way I can understand the relapses and reinfection better. I dropped off the sample today at 8:00 AM and got some of the results 4 hours later.. I am still waiting for the PCR test rest, but the Antigen and Toxin test were negative, see the following.

Component Results
Component Your Value Standard Range
C. difficile Antigen Negative Negative
C. difficile Toxin Negative Negative
C. Diff Interpretation Negative Negative

Collected on 07/29/2020 7:15 AM from Stool (Stool)
Resulted on 07/29/2020 11:54 AM

I guess they might have changed their form to Spores that is why not detected
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

beth22
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Re: I maybe relapsing after FMT?

Postby beth22 » Thu Jul 30, 2020 1:40 am

I had a lot of PI-IBS after FMt and I got SIBO as well. I think the SIBO gave me most of my symptoms.

Ali-Mar
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Re: I maybe relapsing after FMT?

Postby Ali-Mar » Thu Jul 30, 2020 1:54 am

Thanks, Beth, I looked up SIBO and have some of the symptoms, but I am not losing weight and my appetite is not bad. How did you treat SIBO?
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

poppy86
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Re: I maybe relapsing after FMT?

Postby poppy86 » Thu Jul 30, 2020 6:40 pm

It's encouraging that your test results were negative. I really hope that you start feeling better very soon and the pain and bloating subside.

georgina
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Re: I maybe relapsing after FMT?

Postby georgina » Fri Jul 31, 2020 2:24 am

If the antigen was negative cDiff is out of the question ! Have you submitted the calprotectin stool sample? Also , for SIBO it might be a good ideea to test first . The treatment is with Xifaxin.

Ali-Mar
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Re: I maybe relapsing after FMT?

Postby Ali-Mar » Fri Jul 31, 2020 11:14 am

Thanks, Georgina, if the Antigen is negative is it mean I am not colonized?

Yes, I am still waiting for the calprotectin test result, it is taking longer.

I will talk to my GI on my next appointment about the SIBO. It looks like there is no simple SIBO test, based online there is the breath test not sure if it accurate and there is the other test going into your small intestine and getting samples, which is the golden standard

Is Xifaxin safe to take as far as the C Diff is concerned?
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

beth22
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Re: I maybe relapsing after FMT?

Postby beth22 » Sat Aug 01, 2020 1:08 am

The first time I tested for SIBO, my numbers were off the chart - 150%, one of the highest the specialist had seen. It may have had to do with the fact that my first FMT was top down and that bacteria got into my small intestine. I'll never know for sure, but that is what the doctor thinks. He had one other patient like that. Anyway, my food intolerances were so bad that I did take a round of Xifaxan. My breath test came down to 50%, still positive, but better and my symptoms got much better. I did not relapse with c diff. Xifaxan is used as a chaser to vanco sometimes.

However, I did get c diff again after taking Cipro and this time I had a colonoscopy FMT. I treated the SIBO with diet. The doctor gave me a list of recommended and not recommended foods. It improved.

georgina
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Re: I maybe relapsing after FMT?

Postby georgina » Sat Aug 01, 2020 3:24 am

If GDH is negative you are not colonized!
Xifaxin is a antibiotic designed to get relief from IBS-D symptoms of abdominal pain and diarrhea. It's also designed to reduce SIBO as it stays only in the intestine , it is not absorbed into the bloodstream . It is also used as a chaser for Cdiff main treatment , sometimes , and even though some people have reported that they relapsed because of it most people are doing well while on it and also see improvement after the course. I have taken more then one round of Xifaxin , never relapsed and always had relief , and less food intolerances.

Ali-Mar
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Re: I maybe relapsing after FMT?

Postby Ali-Mar » Sat Aug 01, 2020 2:13 pm

Thanks Beth and Georgina

Having a negative Antigen Test should be little comforting, but because once at peack of my CDI active infection when I had over 10 bowel per day I had an false negtive test of the Antigine and EIA Toxin (the exact same test and same lab, Scripps lab), Few weeks lafter since I still had all the symptoms plus a lof of mucus , we tested again using PCR this time and at Quest lab, it was positive this time . I will test again in few weeks just to make sure this was not a false negative again.

My bowels are having too much foul smell ( like sour) which is concerning.l have not eaten anything new still the same bland diet as last 6 months
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

roy
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Re: I maybe relapsing after FMT?

Postby roy » Sat Aug 01, 2020 2:45 pm

The problem with doing multiple tests is what one is correct!
if you get 4 negatives and one positive then the odds are only 20% (1 in 5) that the positive is the accurate one.

Ali-Mar
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Re: I maybe relapsing after FMT?

Postby Ali-Mar » Sat Aug 01, 2020 3:15 pm

I dont think the formula is that simple and linear. And I don’t think there is such thing as false positive. The EIA has only 25% probability of false negative, so if you test twice or the most 3 times you mitigate the error rate. If you test positive than you have the bug even though you might not have the active CDI... I read the only time you can test false positive is if when the person has IBD... I dont think of being carrier as false positive it is true you dont need treatment but you still carry the C Diff
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

roy
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Re: I maybe relapsing after FMT?

Postby roy » Sat Aug 01, 2020 5:17 pm

Seems you know better than the experts who wrote the guidlines!
Some of your posts are becoming close to being dangerously misguided and might have to be deleted.


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