Taking vanco prophylactically with symptoms: Wondering about potential relapse after successful FMT

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CSHF
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Taking vanco prophylactically with symptoms: Wondering about potential relapse after successful FMT

Postby CSHF » Wed May 23, 2018 10:09 am

Hi all. I am a 48 year old female. I suffered with cdiff for over a year, being treated with mostly Vanco but unable to come off of it without symptoms accompanied by positive tests for toxins. I was finally cured with an FMT. Now, approximately a year and a half later, I started Vanco prophylactically a few days after I began a seven-day course of doxycycline for cellulitis. I stopped the doxy over a week ago and am now on schedule to taper off the Vanco, but I’m having symptoms. Compared to my previous experiences, my symptoms don’t seem like full-blown cdiff. There is a bit of the familiar smell, I think, and I’m having frequent bowel movements: 3-6 in the AM and a couple of more later in the day. Stool is soft, w occasional diarrhea.

Around the time I started Vanco (this time around), I felt unwell and was tachycardic. That went away but the changes in my bowl movements continued. I felt a little better only after going to 3x/day Vanco (from 2) and adding more fiber to my diet. I suspected that I might need more fiber when my stool was missing form but was not diarrhea. Then I went down 2x/day, had diarrhea right away, and so went back up to 3x/day yesterday, when I also took a dose of immodium (I don't normally take this). I’m feeling better today. Only one bm so far.

Another background fact that may be relevant: A couple of months after the successful FMT, I underwent a necessary surgery and was given one dose of antibiotic prior to the surgery. Within a week of the surgery I started having diarrhea and tested positive for cdiff toxins. However, during the weekend when I was waiting for the test results the diarrhea cleared on it’s own, and so I never ended up treating and remained fine after that until a few weeks ago.

Does anyone have advice about questions I ought to be asking to sort out whether this is cdiff? And can cdiff be present but in a controlled way while on Vanco (represented by minor symptoms)? In other words, is it possible that cdiff is present and is being partially “held back” by Vanco? My doc hasn’t suggested testing at this point because treatment began prophylactically and now he will continue treating based on symptoms rather than test results.

Thank you. And best wishes to all of you searching for cure and those of you who have been cured.

AllisS
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Re: Taking vanco prophylactically with symptoms: Wondering about potential relapse after successful FMT

Postby AllisS » Thu May 24, 2018 9:27 am

I've never heard of vanco being taken prophylactically and suspect it's not a good idea. (Hopefully, others will weigh in with their perspectives on this.) Meanwhile: it sounds more like you have what's known as post-infectious IBS than C. diff at this point. Many people have these IBS-type symptoms post-C. diff.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

OCmama
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Re: Taking vanco prophylactically with symptoms: Wondering about potential relapse after successful FMT

Postby OCmama » Thu May 24, 2018 11:57 pm

Some doctors do pair vanco with an antibiotic post cdiff. For example if my daughter (age 3.5 during relapsing infection, was to need an antibiotic in the 2 year span from the end of her CDI her infectious disease doctor said she would pair vanco with any necessary antibiotic. However, I have read that this is not a good idea as vancomycin damages the gut flora and can lead to relapses... My ID reccomended I pair any future antibiotics with Dificid, as I am allergic to vancomycin. Too bad my insurance doesn’t think the same.

beth22
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Re: Taking vanco prophylactically with symptoms: Wondering about potential relapse after successful FMT

Postby beth22 » Fri May 25, 2018 1:32 am

The only time I took vanco prophylactically was when I had to take Levaquin for an infection. I had D the entire 10 days that I was on the medication. When I stopped the Levaquin and continued with vanco per doctor's instructions I did not feel well and the c diff smell started to come back. My doctor instructed me to do some home FMT enemas and that helped a lot. About 4 or 5 months later, I got whooping cough which was at first misdiagnosed and was on 10 days of doxycycline. I did not take vanco and felt fine on the doxi. After the doxy, when the tests showed I had whooping cough, I had to take a zpak and I did not relapse either, although that did give me some GI symptoms.

Two years ago I was in the hospital with complications of the flu and given some strong cephalospoin antibiotics (can't recall the names) through IV and then some at home. I did not take vanco. About 6 weeks later I got D and tested positive for c difficile, but by the time the test results came back, I no longer had D. I did not treat and have not treated. However, if I test on PCR, I test positive, but on EIA it is negative, indicating that I am colonized, but do not have an active infection.

Some doctors give vanco with another antibiotic, but in my case, I chose not to do it after the bad experience with Levaquin and vanco. Also, when I took vanco for c diff, I was on a continual relapse and also had to get FMT - actually more than one FMT. I would get another opinion if you are faced with this again. For now, Dificid would be an option as well if you are indeed positive.

CSHF
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Re: Taking vanco prophylactically with symptoms: Wondering about potential relapse after successful FMT

Postby CSHF » Sat May 26, 2018 10:07 am

Thanks very much to all for replying. This is very helpful info.


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