Advice please - to treat or not to treat

[NS789]

Hi everyone,

As many posters on here know, I've been battling C diff for the majority of this year. I've tried multiple courses of antibiotics (as summarized in my signature block below) with no success.

Most recently I was prescribed a very long Dificid taper, which was basically my doctor's last resort. I finished the taper and did well for about 2 weeks before I became symptomatic again (which seems to be the pattern). I had WD, nausea, cramps and wicked heartburn for about 4 straight days. I thought, here we go with relapse #6. I called my doctor who recommended yet another stool test.

BUT, strangely, after those bad 4 days, I started to improve. Slowly I returned to 1 BM per day. My doctor still told me to do a stool test so I did. I assumed they would reject it since it was formed but apparently they tested it anyway because my doctor called to say I'm positive again.

I have no idea what to do at this point... I continue to have 1 formed BM per day. My only complaints are heartburn and some minor bloating/cramping at the moment.

I rely so much on the advice on this site and I know that many of you say not to overtreat. What would you do in this case?

My doctor and the infectious disease specialist she is consulting are strongly advising me to do another round of Vanco. But won't that just set me back farther in terms of my gut ever getting back to normal? Vanco is so harsh and it didn't work for me before.

As crazy as it sounds, I feel like ignoring the doctor and the specialist for now and doing nothing... taking a wait and see approach. But do I risk damage to my bowels if there is active C. diff in there and I do nothing about it?

Any thoughts would be appreciated. Thank you so much.

[NS789]

Ps - Here's what my most recent test results say:

Test name: C. diff cytotoxin assay
Result: Positive for C. difficile common antigen. Positive for cytotoxins A and/or B.

Is this a reliable test?

[beth22]

Yes, it is a reliable test, but you can test positive for a long time after completing treatment. I had a positive test and when I got the results, like you, I was having normal bms, although other symptoms like gas, bloating, food intolerances. My doctors (ID and GI) both told me not to treat and to take Pepto Bismol, which I did. I didn't take much, but I took it with my lunch and dinner as needed. I never did have to treat the c diff. At first, I still tested positive, but only on PCR. Later the PCR was followed up by an EIA test and that was negative for active infection, but eventually even the PCR was negative. If your D returns, then that is different. But, I don't think it is a problem to wait and see if your own body can fight this off. You might ask the doctor about taking something like cholestyramine. It is a powder that you mix with water and it binds up toxins and carries them out. Some people have taken this after completing antibiotic treatment for c diff and it has helped. It is a cholesterol lowering medication and needs a prescription.

[NS789]

Thanks for the response, Beth! I definitely don't want to overtreat and set myself back. Especially where the symptoms are so mild. I'm hoping my body can keep the C. diff at bay until my gut flora finally recovers. It amazes me that any C. diff can still be alive after the barrage of antibiotics I've taken! Such a resilient bug.

I am conscious of the fact that you can still test positive for awhile, as you mentioned. But I do worry that the toxins are still there and detectable.

Anyway, I do have some Pepto so I will give that a try in the meantime. Thanks again for your advice!

[Ali-Mar]

NS789 I am so sorry to hear you are still testing positive for C Diff. During my relapses, I would purchase the med but not use it until I was certain it is a relapse and it is an active C Diff infection, which in my case it was seeing mucus in the stool for multiple days. I won't treat it if there are no obvious symptoms of an active C Diff, but purchase the med in case if the symptoms return.

Ali

[NS789]

Thanks Ali! That's exactly what I'm going to do. I picked up the meds that were prescribed (an 11-week Vanco taper!) and I'm just going to hang onto them for now. I will only take them if it's clear that I need them.

Hope you're doing well!