New and Very Confused- Help!

[AmyL1027]

Hello all. I was diagnosed with CDiff in January after taking antibiotics for Strep that was not actually strep. I took 10 days of Flagyl which in my opinion was worse that the C Diff. I also took a probiotic. After finishing the med, the D came back in three days but no fever or other sickness so I call the doc again. Did 2 more cultures and put me back on Flagyl. Test came back negative, symptoms disapeared and Flagyl discontinued. At this point I bleached everything in my house! 9 days after stopping the Flagyl, the D is back. Not as bad as when I acually had the Cdiff but still have D 6-8 times a day. Lots of stomach cramping and discomfort. I am now seeing a GI doctor who I saw in the 9 day span of wellness and gave me Florastor. Left a message yesterday and he wants to call me in the Vanco.
My confusion is this, if the tests came back negative then I dont have CDiff right? Why does this keep reoccurring? Is my system just totally out of sorts? I am taking Florastor and Aline. I just keep feeling that no one is giving me any informaiton about what I should or shouldnt do and how to get well again. Anyone have any similar issues or can tell me where to get the best information. If the tests are negative what is this and do I need Vanco? Thanks for reading and I look forward to hearing from you all.

[Suezer]

Did 2 more cultures and put me back on Flagyl. Test came back negative, symptoms disapeared and Flagyl discontinued.

Hello Amy. Did you complete the 2nd round of Flagyl? Just wondering how many days you took it before discontinuing.
Sometimes they say you can get a false negative, and perhaps there was a bit of the infection lingering, in which case, completing the 2nd round may have been benefitial. Or it could also be that your system is not yet fully recovered, they say it takes time, and some end up with Irritable bowel as a result of the infection. At any rate I hope you can get some answers and begin to feel better.

[AmyL1027]

The first time I took Flagyle for 10 days. Went 3-4 days symptom free. Then took 2 pills and gave culture and gave another culture the next day. However, when I had the Cdiff and was n the Flagyl for 24 hours and had a culture, I tested positive for it.

Spoke to doc today and they said if culture is negative, it should be gone and my body could still be readjusting to the good/bad bacteria balance. Suggested continuing the florastor, increasing yogurt intake, and taking a Citrucel pill before bed. if that doesnt work, start the Vanco next week. I think I ma going to stick to that after calling the pharmacy about the cost of Vanco. $245!!! Wow! Not taking that unless I have CDiff.

[Nancy1]

Amy Lynn,

Welcome to the group that no one wants to join. Be sure to read All Users Read This First, Dr. Borody's article, Dr. McDonald's article (in the FAQ section under Articles by Experts), and all areas of FAQ that interest you.

You have gotten some good advice. False negative test results are common. I only tested positive once in my 8 months of cdiff. It is best to decide whether to take vanco (or Flagyl) based on symptoms, rather than on test results. FYI, my vanco cost $100/day for 4 pills of 250 mg each.

We don't know why some of us keep relapsing. I wish we did! Good luck. Let us know how it goes.

[feelinghopeful]

Hi,

I agree, that sounds like a lot of going to be IBS. I posted this link before but fyi, so you see the recommendations for testing. If you have a strain that doesn't produce much toxin or if you happen to catch a sample when there isn't a high percentage of toxin (the bacteria don't continually produce toxins in most strains - it's the very scary one that does and I doubt you have it or you wouldn't be here) or if there simply isn't that much toxin present in your sample for any number of reasons (if it's mishandled, even) the assays (it's not a culture, generally) are notoriously inaccurate, hence they recommend the below, taken from a very recent study. "CDT A and B" means the toxins:

"If the prevalence of CDT A and B in stool samples is relatively low (<10%), the positive predictive value of these assays is unacceptably low (eg, <50% in some circumstances) and will vary depending on the assay and number of samples tested. This low positive predictive value impinges on clinical management, outbreaks, and makes epidemiological data unreliable. To improve diagnosis, we suggest a two-stage testing strategy for C difficile toxin with an initial highly sensitive rapid screening test to identify positive samples that are then confirmed by a reference method."

You have to copy and paste the link for some weird reason. It just doesn't work right.

http://www.thelancet.com/journals/lanin ... 73-3099(08)70233-0/abstract

[feelinghopeful]

P.S.

They're refering to testing in a medical environment, I believe, but the bigger point for us is, you can't rely on one test or even two if your symptoms warrant further attention.