LATEST INFO TESTING & RELAPSING - READ

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Bobbie
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LATEST INFO TESTING & RELAPSING - READ

Postby Bobbie » Tue Dec 23, 2014 11:40 pm

I asked a C. diff. expert these questions as many docs. disagree. I trust his answers above all others.

Q. How long to retest after Flagl/vanco/Dificid during active C. diff.?
A. 7 to l4 days and the longer the better. PCR is false positive for up to two weeks as bits of DNA from killed C. diff. are passed out, and if tested too soon gives a false positive result. Culture early is accurate but not easy to get done by labs.

Q. When to have FMT?
A. After two or three rounds of C. diff. meds.

Q. Is PCR most accurate test?
A. Yes, with above condition.

Q. Do the spores/bacteria lie dormant in your system until another antibiotic/or other cause activate them?
A.Yes, spores do lie dormant -- that is the underlying mechanism of the "relapsing" nature of the disease togethre with the damage to the host microbiota.

"BUT after FMT there are no longer any spores left and antibiotics will not cause a relapse. The reason we use FMT is that the incoming new bacteria possess bacteria which secrete 'antibiotics' that kill the spores.

Relapse after successful FMT generally requires antibiotics + exposure to a new source ( generally different strain) of CDI."

Expert said, "...The best test of FMT in CDI is a course of antibiotics without recurrence. Works if well done. I routinely do 2 infusions. First via colonoscopy next day enema. Get close to 99% cure. Then the patient is GENERALLY safe . Exceptionally (3-5%) antibiotics + close exposure to a new strain eg in hospital .. Will give them another CDI infection. ....
So around antibiotic time keep out of hospitals, keep away from sick people, wash hands , no cold meats , pray lol."

So, wash your hands, try to avoid antibiotics (if that is your "trigger"), and know someday soon, with all the new knowledge, treatments, and additional testing, C. diff. will be a disease of the past - like so many others: bubonic plague, polio, small pox, etc - or at least easily treatable. Remember, you aren't necessarily part of this category. Many (the majority) recover from C. diff. easily and never have it again.

Toya donated the following after she called about the results of a PCR.

They had done a PCR for toxinogenic C Diff and a test specifically for the NAP27 strain and both were negative.
Incidentally, just for confirmation and clarification, I asked her (...Director of Clinical Trials,at theUniversity off ...) exactly what the PCR test looked for. She told me it looks for the organism itself - the c diff bacteria and looks for the gene in its DNA that tells the bacteria to produce the toxins. I asked her if the PCR test would detect the spores. She said, "yes." I also asked if it would detect the presence dead bacteria. She said, "yes." She confirmed that it does not test for the toxin itself. The C Diff does not need to be producing any toxin at all to be detected. She further explained that this was why they don't like to test someone with no symptoms...even someone in the 'carrier' state, whose spores are completely dormant, will return a 'positive' test result.

No test is 100 per cent, but the PCR is one of the most accurate so far.


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Snow75
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Re: LATEST INFO TESTING & RELAPSING - READ

Postby Snow75 » Sat Dec 27, 2014 2:05 pm

Regarding the spores lying dormant, do you know if they eventually get flushed out of your system over time if you don't relapse or are you just stuck with them for life and susceptible to c diff every time you need an antibiotic? I honestly feel like I'm getting more in depth info from this forum than I am at my doctor's office, and I want to be prepared for the next time I need an antibiotic. Thanks.

justme
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Re: LATEST INFO TESTING & RELAPSING - READ

Postby justme » Sat Dec 27, 2014 5:11 pm

THANK YOU BOBBIE! You have answered many of the questions I have about the beast. It looks like an FMT is the closest they've come to a cure. It's too bad relapsing is required to get an FMT. Most doctors are so clueless about this disease and why this site is so valuable.
Aloha,
Anne

mjmcgetr
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Re: LATEST INFO TESTING & RELAPSING - READ

Postby mjmcgetr » Tue Dec 30, 2014 6:34 pm

Thanks ! Great advice ! I am looking down the barrel of a FMT and really don't understand why its not first line treatment.

happygolucky
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Re: LATEST INFO TESTING & RELAPSING - READ

Postby happygolucky » Sat Jan 10, 2015 4:04 am

what is "FMT"? I'm new to this...sorry for the questions?

beth22
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Re: LATEST INFO TESTING & RELAPSING - READ

Postby beth22 » Sat Jan 10, 2015 6:09 pm

FMT = stool transfer

GCTrailRunner
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Re: LATEST INFO TESTING & RELAPSING - READ

Postby GCTrailRunner » Sun Jan 11, 2015 12:55 pm

After reading this I wish I could have an ! MY but doctor won't do it unless I relapse again. He said his hands are tied. Insurance will not cover and he can't do it without justification. Really SHOULD be the first line of treatment.
Gloria

Bobbie
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Re: LATEST INFO TESTING & RELAPSING - READ

Postby Bobbie » Sun May 03, 2015 1:04 am

Asked c diff expert if a virus can cause relapse, and he said, "Viruses do not stimulate c diff."

jess2015
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Re: LATEST INFO TESTING & RELAPSING - READ

Postby jess2015 » Tue May 19, 2015 6:22 pm

So PCR tests for c.diff itself but not it's toxins? I was recently re-tested 11 days after treatment and it was positive. I know PCR testing was used but my results also say TOXIN A and TOXIN B detected.

Misscshell24
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Re: LATEST INFO TESTING & RELAPSING - READ

Postby Misscshell24 » Tue May 19, 2015 6:27 pm

It is confusing. There is more discussion on this topic in the 'relapse' post a few posts down in this forum. Also read should I test for cure? In this forum. When you tested positive what were your symptoms?
Michelle

jess2015
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Re: LATEST INFO TESTING & RELAPSING - READ

Postby jess2015 » Wed May 20, 2015 9:09 am

This time when I tested positive my stools were more on the formed side but with mucus and the icky smell, bad stomach cramps, loud stomach noises, a lot of extra gas, nausea, generally feeling run down and not well for no real reason, and proctitis.

skizamii
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Re: LATEST INFO TESTING & RELAPSING - READ

Postby skizamii » Wed Jul 15, 2015 5:02 pm

So if I was tested 3 days after my last Dificid dose and tested NEGATIVE, its pretty encouraging I take it as most likely I'd get a false POSITIVE test?

Bobbie
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Re: LATEST INFO TESTING & RELAPSING - READ

Postby Bobbie » Sat Jul 18, 2015 1:09 pm

skizamil,
You could also get a false negative because you were on meds. recently. Best to wait 7 to 14 days. Encouraging though.

skizamii
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Re: LATEST INFO TESTING & RELAPSING - READ

Postby skizamii » Sat Jul 18, 2015 1:48 pm

I forgot to mention that I also tested negative for lactoferrins, an indicator of infectious D. Hoping that between the 2 negative tests it is really gone, but I am stin Miserable. Lots of D today :(

roy
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Re: LATEST INFO TESTING & RELAPSING - READ

Postby roy » Sun Jul 19, 2015 12:21 pm

I thought lactoferrin was part of a normal healthy immune system.
Are you sure that testing negative for lactoferrin is a good thing?
The testing should give a measure of lactoferrin, low, normal, high etc.
Not negative or positive.


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