Still C-diff possitive, but feel ok?

[WifeMommyNurse]

Hi All,

I finished a second round of vanco on the 3rd of August (14 days) and I waited a full 16 days to do test. I've been on florastor, culturelle and reuteri. I've actually felt fine. Had a couple of days where I wondered (I posted here about it) but I got better on my own. I called doc today and I'm still positive and he wants me to come in. I don't get it. Is it the probiotics keeping it at bay? I really want this gone, and I know you all understand. I have been taking the probiotics pretty religiously and had one day where I lapsed. Now I'm afraid to stop if they are why I'm feeling ok. I haven't had D, no c-diff smell. The color has been changeing over the past few days. I don't know what to do. Should I try pulsing, do nothing? Help!!!

Thanks,

[Allison]

Hi Cherise,

Your situation is exactly why some forward thinking docs don't like to routinely test after treatment unless relapse becomes obvious. The test results are not always a good barometer for gauging active infection....going by clinical symptoms may be better.
They recognize two factors that can really muddle results:
1. high risk of false negatives. Lots of folks can test negative after treatment but are not out of the woods. It's common to test negative, have a doc declare a patient "cdiff free", only to relapse days or weeks later.
2. It is possible to test postive for residual toxins but feel fine and be gaining ground. In other words, cdiff is on the way out and the positive result is not clinically important.

A conservative approach would be to continue what you're doing, but don't start another regimen of antibitoics unless symptoms show up again that strongly signal a relapse.
See what your doc has to say. He may want to see how you're doing clinically before any decision is made about continuing treatment or not.

[cindym]

If it were me I would want to hold off on all antibiotics and hope my body continued to heal on its own! I LIVE FOR THAT DAY!

[diane]

My doc said that if I ever get c diff gone and test positive and all is well other wise he would not want me to go back on antibiotics when my body is doing ok otherwise/

[WifeMommyNurse]

Thanks a lot for responding. Yea, I guess that makes since, although I guess in my profession when we get a + we assume we still need to treat even sometimes even if the person feels better since we tend to kill everything with abx instead of letting the body heal. I'm just wondering if I need to continue with my probiotics and for how long. I am at this point because if it's working I want to continue.

I hope you guys feel better soon. I just find it hard to think I'm on the mend with a + test. It's too weird how I had a negative specimen last time and was already relapsing with active c-diff, now I have a + and I feeling ok. What a crappy (literally I guess) disease. I've been warning folks at work already and telling my story to all who will listen.

Take care and thanks...

[diane]

Cherise,
I know how you mean about telling your story. I think all people should be aware of this dumb disease. HOpe all stays well with you. HOw long off meds again? Continue to get better and I hope there was just some left overs so to speak..lol

[WifeMommyNurse]

Diane,
I've been off meds for 29 days. Had one day that really had me worried on day 11 (think it may have been something I ate), but have been ok since then. I'sm curious to see what my GI doc will say next week. Meanwhile I'll keep up my regimen. I have a big trip coming up next month, want to feel 'normal' on that trip (whatever that now is). Take care and best of health to you!!

(die c-diff die!!)

[Bobbie]

WifeMommyNurse,
I agree -- the medical field tends to treat sometimes when the body can heal itself. I understand why docs. overtreat because some patients demand a pill for anything that ails them -- including antibiotics for viral infections. We need more diagnostic tools -- not more medications.

One of our posters (Amy) tested positive for quite awhile after she no longer had symptoms of C. diff. Amy, isn't that correct? "Don't fix it if it 'ain't broke."

Don't expect to return to "normal" right away --- few people do & some wind up with IBS or post C. diff. colitis.

Glad you are feeling better. Please help us educate the medical profession about C. diff. You've "been there" and know what it is really like -- not some "little" disease. I agree -- "die C. diff. die." And C. diff. is a "crappy" disease -- in every way.

[diane]

Cherise,
well lets hope you get a clean bill of health.. nothing worse than going on a trip with c diff.. I know I did it ... you've come along way and your almost to the point where you will be relieved when its gone!! I wish you the best and hope it stays gone !!!!!!!!!! Good luck.

[Faith]

I finished my 1st round of Flagyl over 2 wks ago now, and have been taking probiotics since then. Things are certainly not "back to normal" yet, but at least I'm quite certain that I no longer have active C-Diff! I too was wondering how long I need to keep taking these, as I find they are quite expensive. I guess we have to get used to a new "normal" now, and take things one day at a time. I know that I've slowly been feeling better each day, it's taken such a long time to get my energy back to where it was before C-Diff. I also work as a nurse, so I've been educating anyone who will listen on this disease, and how serious it is! I was totally shocked when I was dx with this, as I thought before visiting this site that only frail, hospitalized pts could get it. Good luck to you on your recovery!

[Bobbie]

Faith,
People continue to take probiotics for varying lengths of time. Some take them for years later or whenever they have a "bad" day. It's up to you. They are expensive.

Things probably won't go "back to normal" for some time as C. diff. is hard on the GI tract. Expect occasional bad days. If you have more than 3 in a row (see FAQ-The Three Day Rule) or your symptoms return, contact your doc.

Please help educate your fellow health care workers about C. diff. You are the best advocate because you have experienced it, and even though you recovered quickly, many don't & struggle for months or even years. Even with your typical case (which responds with one to two rounds of antibiotics), it wasn't any fun. The most important info. you can pass on to co-workers (incl. docs.) is WASH YOUR HANDS.

[dalamy]

Yes - I tested positive back in June 2005 and have not had any diarrhea ever since (except after my one dose of Biaxin XL).

I really expected a negative at the time - so it confused me too! I still consider myself in remission.

Amy