Questions regarding PCR false positives

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pchopy
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Joined: Tue Aug 15, 2017 5:45 pm

Questions regarding PCR false positives

Postby pchopy » Tue Aug 15, 2017 6:30 pm

Hello there,

A brief introduction, I am a 33 year old male who was diagnosed with CDI on June 29th of this year following approximately 3 weeks of IBS like symptoms initiated by a broad spectrum antibiotic prescribed for a sinus infection. My PCP put me on a 14 day course of flagyl, however, I only lasted 10 (side effects were terrible, I honestly felt worse than before treatment). Four days post flagyl I tested again via PCR (I know, I know, I had not done my research yet) and the results were negative. Subsequently, I relapsed six days later at which time my PCP prescribed a 14 day course of vanc. That course finished on August 2nd. After doing what research I could from home, I opted to wait until the 14th to test again (via PCR) and I received the results today: positive again! My PCP has referred me to a GI she works with and my next appointment is for monday.

Here are some questions I have:

1. My symptoms all began approximately 4 days after completion of the antibiotic prescribed for the sinus infection. I woke up with some cramping and preceded to have diarrhea intermittently for the next 10 or so hours (the frequency tapering off as well as production). Obviously I thought I had ate something disagreeable and gave myself time to recover, however, my stool never returned to normal (loose, but not the same watery diarrhea I experienced the first day). I finally sought medical attention when I noticed mucous (luckily I never experienced blood). Aside from the first day, I never used the restroom more than 4 times a day.
After the round of flagyl, I recognized the recurrence of the infection because of a repeat of symptoms experienced that first day: a return of the watery diarrhea for approximately 10 hours (followed by a tapering off of symptoms). The vanc immediately halted most of my symptoms and I made it to the end of my treatment without any major side effects. In the two weeks I have been off the vanc, I have not had one incidence of the watery diarrhea that was my signal for recurrence; however, I have experienced general unease (anxiety), some bloating, and what I would call "not normal stools". In general, I have two bowel movements per day, and seem to feel better as the day goes on. I tested via PCR yesterday (which would be 12 days post vanc) and was given the positive results today. I am not asking for medical advice, I have an appointment with a GI for monday (earliest I could get in), I am simply trying to clarify my thoughts with the aid of your expertise! Given my symptoms (loose stools, but not diarrhea [with no mucous or blood], 1-2 times per day) am I crazy in thinking this might be a false positive? I know 2 weeks out is a little to soon to disregard the possibility of relapse, but given that each time I undergo antibiotic therapy I am further destroying whatever intestinal ecology I have left I am hesitant to treat again.

2. Has anyone found that they are unable to tolerate any probiotics? I was taking floraster, VSL 3, and culturelle (not all at once, but rotating daily) but I found that my symptoms lessened considerably when i stopped. The same can be said for fermented foods which are recommended (kefir, sauerkraut, kim chi, etc...), I am gassy and bloated after eating them (a common occurrence, I know, but after CDI my anxiety goes through the roof every time i feel any kind of rumble down there).

3. Finally, has anyone had any experience with ECOSPOR (an investigational therapy also known as SER-109)? It is essentially a pharmaceutical grade probiotic chaser (containing a spectrum of benign spore producing bacteria cultured from healthy stool donors) taken after a course of either vanc or difficid aimed at reducing recurrence. The stage 3 clinical trials are currently underway and the information is up on clinicaltrials.gov.

beth22
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Joined: Tue Apr 07, 2009 2:23 pm

Re: Questions regarding PCR false positives

Postby beth22 » Tue Aug 15, 2017 8:34 pm

Hi and welcome to the site. Please read the first forum for more information and posting guidelines. To answer your questions, you could still be positive on PCR , but not have an active infection. Some labs test for toxins if PCR is positive. I have been testing positive on PCR for over a year, but negative for toxins on EIA test. You have to go by symptoms and not test results alone.

I did not tolerate probiotics or kefir well at all. I also became lactose I tolerant and could no longer eat yogurt or other dairy products.

I have read about SER 109 and was going to be in the clinical trials for them, but then they postponed them due to poor results in phase 2 and now they changed the rules and since I had FMT before am no longer eligible. If I were, I would be happy to participate.

pchopy
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Joined: Tue Aug 15, 2017 5:45 pm

Re: Questions regarding PCR false positives

Postby pchopy » Wed Aug 16, 2017 6:16 am

Thanks very much for the response! I went back and checked my test results (my healthcare system has an online portal) to see if I could acertain whether or not a follow up immunoassay test was performed subsequent to the PCR; I`m still not sure, but under the result listing it does say positive for toxin B, however, I checked one of the previous PCR tests (that was not positive) and it contained a disclaimer that the PCR would come up positive in the presence of the exotoxin genetic material but that diagnosis of active infection required examination and assessment of symptoms. Even if the test is correct and I do have a certain amount of active C DIFF bacteria still present in my system, I am still left wondering whether or not I should be proactive in getting treated as soon as possible given my symptoms being so mild (at least compared to the other brave souls who post here).

One of the more depressing consequences of my infection is that I was unable to return to Japan to visit my in-laws with my wife who is Japanese. I didn't want to ruin everyones fun, so I practically forced her to go ahead and have a good time without me (at least I could bleach everything in the damn house while she was gone!). With a little research, she has obtained a couple packages of the Japanese probiotic (clostridium butyricum a.k.a miyairi-588) that is used over there for antibiotic associated diarrhea. I will give it a try, especially if I have to do another round of antibiotics.

If i do go another round, I`m going to try to get enrolled in the ECOSPOR trial as well. If that happens Ill be sure to do a write up for everyone on my experience.

Thanks again

Lisa33
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Joined: Mon Sep 29, 2014 1:45 pm

Re: Questions regarding PCR false positives

Postby Lisa33 » Wed Aug 16, 2017 10:33 am

I think I would also question if you got a false positive with the PCR. It may still be too soon after finishing the vanco. The proper protocol is really to treat based on symptoms alone. 1-2 times seems very normal to me, and is actually pretty good for early recovery. You should definitely discuss your concerns with your GI to see if you should even retest, and perhaps with a follow up EIA toxin test.

I can tell you for me that for several months after finishing vanco, I had very inconsistent BMs. They were mostly loose, and my mornings were usually pretty bad. I would have terrible nausea in the morning, with anywhere from 2-5 BMs that would actually wake me up in the early morning hours. However, they were not watery D - just loose and semi-formed. But then the rest of my day would be completely fine. I remember dreading the next morning though. As time went on, the good days started to outweigh the bad ones and then it went to just bouts of IBS. I definitely had a "new normal" after c-diff. It took me 8 months to have just 1-2 BMs per day. From what you describe, if there is a c-diff infection still present, it's pretty mild. Only you and your doctor can decide on whether or not treatment is necessary, but I definitely would question it as your symptoms do not seem to warrant it.

Good luck at your appt.
Lisa


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