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.
One year from first cdiff diagnostic
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Re: One year from first cdiff diagnostic
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
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
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Re: One year from first cdiff diagnostic
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.
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Re: One year from first cdiff diagnostic
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.
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Re: One year from first cdiff diagnostic
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.
Thank you.
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Re: One year from first cdiff diagnostic
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.
Lidia.
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