One year from first cdiff diagnostic

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Lid49
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Joined: Tue Sep 05, 2017 4:39 pm

One year from first cdiff diagnostic

Postby Lid49 » Mon Apr 09, 2018 2:13 pm

It is been a year with cdiff , all antibiotics taken and 2 Fmt. Last one done 5 month and 2weeks goo. I have one PCR positive 2 months a go and toxin negative last few days done. Mayo recomandation no treatment. I have symtoms like in the beginning of cdiff nausia, pain fatigue 2 3 mushy stool a day. For a week it is a nightmare. I think I'm done. No more solution, no more hope. Nothing is working.
Lidia.

MKW
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Joined: Mon Sep 26, 2016 9:49 am

Re: One year from first cdiff diagnostic

Postby MKW » Mon Apr 09, 2018 7:35 pm

Lidia, did you have a toxin test recently, or an antigen test?
I am not good at understanding testing but I know these are different. Do you have access to a patient portal or printout of your recent test results? Exactly what does it say?
It is my understanding the antigen test tests for all strains of c Diff, the pcr tests for toxigenic strains, and the toxin test for toxins showing active infection (if symptoms occurring also), but the toxin test is only 70% accurarate so is usually done in combination with the antigen test or pcr test. - if I’m wrong please someone correct me.
If you are antigen negative you do not have c Diff.
If you are toxin negative and no other test was run that could be a false negative and wrong.
But... keep in mind, myself included, many of us have a lot of ibs and other GI problems post c Diff that can be fairly severe but not c Diff. I am still struggling with SIBo and ibs and food intolerances over a year after my FMT.
It’s awful, I feel like I will never be ok again. My GI was ruined by all this. I get hopeless a lot, so I understand your frustration at not knowing what is wrong with your body, not knowing how to help yourself, and doctors saying there is nothing else I can do for you. - Melanie

Lid49
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Joined: Tue Sep 05, 2017 4:39 pm

Re: One year from first cdiff diagnostic

Postby Lid49 » Mon Apr 09, 2018 8:49 pm

Mayo they have a protocol they do toxin and if negative no pcr. Per polycy. I ask be for test on friday. Ibs for a week I want to believe. Thank you Mkv you are so nice.

beth22
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Re: One year from first cdiff diagnostic

Postby beth22 » Tue Apr 10, 2018 1:37 am

The hospital where I test has the same policy. If PCR is positive, they send it for an EIA test. My PCR has been positive since June 2016 and I have not treated, but I have not had the types of bms you describe. I would re-test again. If EIA is positive, then you can treat. If it is negative ask about taking something like EnteraGam or cholestyramine to help firm up your stools.

Lid49
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Posts: 143
Joined: Tue Sep 05, 2017 4:39 pm

Re: One year from first cdiff diagnostic

Postby Lid49 » Tue Apr 10, 2018 6:54 am

I do take enteragam, it is very confusing for me way mayo clinic is hendaling test this way way you will test toxin for cdiff with no antigen.
Thank you.

Lid49
Regular Contributor
Posts: 143
Joined: Tue Sep 05, 2017 4:39 pm

Re: One year from first cdiff diagnostic

Postby Lid49 » Tue Apr 10, 2018 3:38 pm

I have to mention I call today and they did run antigen cdiff toxin combo, was negative, I have to make the correction because many people with cdiff looking for answers come to this side like me for info. Thank you.
Lidia.


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