Waiting to see if I have relapsed...

[kck]

Hi - I've been lurking on this site since I was first diagnosed with C.diff in early September (after being on two antibiotics and Prilosec for basically no reason it turns out). I had never heard of C. diff before and neither had anyone I knew (except my RN friend). Sadly now we are well informed. When I was first diagnosed I was given Flagyl 3 times a day for 10 days. I seem to tolerate Flagyl well and really had no side effects. I started feeling more normal just 3 days into it. I finished about 2 1/2 weeks ago and have felt great since. Until this past weekend when I started feeling strange stomach/bowel feelings and slight cramping. No D, but some loose stools. Yesterday I felt pretty good, but today not so much. I am waiting on stool test results right now, which I should have back today. The one thing that scares me is that my doctor uses the GDH and EIA tests, which from what I have read can miss 30% of cases. So I'm just nervous that even if they tell me I am negative, I am not. I really want to nip this in the bud immediately as much as possible so it doesn't drag on forever. I am taking a Culturelle in the AM and a Florastor in the PM and don't plan on stopping for at least 6-12 months. I live in the SF/Bay Area, does anyone know of any good doctors that specialize in C. diff around here? I want to make sure I have options and names in case I need to act fast on anything.
Thanks for listening.

[gm37]

Kck,,
I am sorry you are having ongoing problems.
If you have been reading here, you know that c-diff is one confusing illness for patients....and sometimes doctors as well.
C- diff can cause you to have GI problems afterwards...or you can relapse. You are smart to stay on top of things. As far as I know from my experience, the PCR test is the most accurate. Most hospitals in my area use it. You might ask your doctor about writing a script for that test at the hospital lab.
You don't say if you are seeing a GI or an infectious Disease specialist. They usually have more experience with treating c-diff.
Wait and see what the tests today show and then you can go from there. Let us know.
Anne

[Kathy George]

Your gut may be in the readjustment stage in that the good bacteria needs time to repopulate. However, I don’t blame you for being concern. Perhaps, iIn a firm manner, you could request a PCR test be done. Hopefully, your doctor will cooperate with your request. I’m sure he doesn’t want to hinder the recovery process with either a false negative and/or positive test result. You take care now and please keep us updated!!!
Kathy

[kck]

Thanks both. I haven't seen a GI or Infectious Disease doc yet since my primary doc didn't make a big deal of this when I was diagnosed. I thought it was just some simple thing that would be gone forever once I took meds because she downplayed it so much! However, I think I am going to try and find a GI in this area that specializes in this because I don't really trust a PCP at this point. I will request the PCR test to be done as well. Here's to positive thinking and I'll keep you updated.

[amyc]

You can always go to an urgent care center to see someone and request a PCR test. They send out lab tests and will just have to look up the code in the computer, or you can ask for a test order form and take it to a Quest or other big lab company yourself. If the "old fashioned" test is negative and you still aren't feeling right, that's what I'd do.

[Nancy1]

I live in the SF Bay Area also. I sent you a pm.

[kck]

Nancy1 I didn't get the PM...

[kck]

Whew, well got my results and it was negative. Much relief!

[Kathy George]

That’s great news!!!!! The recovery process begins after the last dose of antibiotic treatment. This is when to good bacteria begins to repopulate. Eventually, the gut flora should become completely reestablished. Bumps and bruises during the recovery process should be expected. As long as post c-diff symptoms do not become increasingly problematic you can rest assure that a complete recovery should occur. Take care and good luck!! As always, my posts are solely my opinion!!!!
Kathy

[Nancy1]

kck, I am not sure what happened to the pm. It is not in my sent file or outbox. Sometimes I have trouble sending pm's. Sorry! What I was trying to do was to give you the name of the ID doc who helped me beat cdiff in 2006. (I don't have her permission to post it on the site.) Since you are negative, you may not need this info now. But if you still want it, please pm me with your email address, and I will email you my doc's info.

[Nancy1]

kck, I got your pm but you didn't give me your email address. So I tried sending you a pm again. Right now I see it in my outbox. If you don't get it soon (within a couple of days) please let me know.