What happens after a Dificid relapse?

[Elvish2]

So last night and continuing into this morning, I started having what seem like unmistakable c-diff symptoms returning (straight m with b, urgency, nausea, bloating, heart pounding, hot flashes - some of this may be anxiety related). It's been just over 4 months since I finished a Dificid taper, so naturally I'm feeling kind of devastated. I had a telehealth appointment with an on-call doctor this morning and will have a stool test ordered, but I know I can't expect those results until probably Tuesday or Wednesday.

If c-diff has come back, what are next steps after a first-line Dificid taper failure? I don't even know if this would be considered a "relapse" four months out? I'm guessing the only choices would be Vanco, or another Dificid taper, perhaps with a chaser. I did fairly well on the Dificid when I took it, I just don't know if a relapse means that Dificid isn't effective in general for me. My GI seems decent, but I don't know if she's that well-versed in the best c-diff treatments, so I want to be prepared.

When I had c-diff in 2011, the treatment was Flagyl with a Questran chaser - which worked in the end, but the Flagyl side effects were horrible.

(I posted last night in the TMI forum, for added context)

[beth22]

I would probably go with a Dificid taper again.

[Ali-Mar]

I highly doubt u can replace after four months, more likely, it is something else besides C Diff, if C diff maybe it is reinfection instead of relapse?

Did you do any tests after the taper?

I relapsed after a long Dificid taper, was Saturday, July 4th, so I called the GI dr on call and he prescribed another 10 days of Dificid, I reachEd out to UCSD on Monday and asked for FMT..

[Ril]

You would not have done any tests after the taper. You don’t test for cure.

One day is premature for c diff. Let us know about the test results if one is ordered. It can still be something else.

I would do Dificid again. I would not rush into a FMT after one round of treatment.

[Elvish2]

Thanks for the feedback, all. Update at this point is that I haven't had an M episode since Saturday morning, so I'm waiting to submit a sample for the c-diff test in the event it happens again. Still not feeling super great (low appetite, exhaustion, had some formed stools on the D-ish side), but hoping this is something that will pass and not turn into a full-blown re-occurrence.

I've been able to be in contact with my GI via online and she agrees with the watch-and-wait to test or treat unless things get worse, and thinks that the M could have been the result of something irritating I ate or a different bug, and may put in an order a Covid test just to check that box off. I know that more normal BMs are definitely a good sign, but my c-diff infection earlier this year started out with several days of ups and downs before turning full-blown, so I don't feel out of the woods yet. All the good vibes/thoughts, please!!

[Elvish2]

Just to bring it up, to my understanding, Dificid is the better medication choice generally, correct? So usually one doesn't do Vanco after failed Dificid? Looking more and more like I am relapsing, unfortunately. Waiting for test results/to talk to the doctor again.

[Ali-Mar]

Sorry to hear you are having a bad day Elvish, I have seen one post on Facebook, that they relapsed after Difcid and cured on the Vanco taper. I was surprised to see that post, as you said, Difcid supposed to be superior.

I am not an expert, but I think all is timing, when you are taking the med, is the bugs in spore state or vegetative state, if it is vegetative form even Flagyl will kill it and cure the person, but if spore nothing can cure it.. My GI said, it changes its form from Spore to vegetative and back and forth every 7 to 8 days.. and takes about 10 hours to become a spore... it seems a very complex bug to kill ... I was relapsing while on the Dificid taper, I don't think taking one Dificid pill per day is enough to keep the bug at the bay. I know few people from facebook groups that took the Dificid regular dose 2 per day for 30 days and they were cured ... total of 60 pills. I wish I know that at the time and did that, instead of taking one per per day and so on ..

[Caligirl]

Oh man I’m so sorry Elvish2.
Hopefully it is a different bug or GI issue. Not saying that there’s no way that it’s Cdiff, but we all have had one GI issue or another during our life before we came down with this nasty infection. I currently have some kind of stomach bug, have had off and on D for a couple of days, I’m just reminding myself that people that have never even heard of c diff get the occasional bout of D, and I’m probably just fighting something else off. If for some reason you do need treatment, I would ask for Difficid again.

[NS789]

Elvish, I actually have been put on Vanco after two failed rounds of Dificid. Both a GI and an infectious disease specialist recommended I try a Vanco taper as a next step. So there are doctors that do prescribe Vanco AFTER Dificid.

[Elvish2]

Quick update that I had a negative antigen/toxin stool test come back the other day, although in my mind I'm concerned about the quality of the sample I submitted (I froze at home before taking to the lab). I had episodes of WD on Tuesday, but nothing since. I had a call with my GI this morning, and she thinks with the negative results and my symptoms as a whole, it's more of an IBS-type flare, and wants me to get a colonoscopy in the not-too-distant future given my history of IBS/colitis that flares up during times of high stress (as lately certainly is for me, for a variety of outside factors).

I'm really trying to mitigate my stress and take things day by day at this point. There's still definitely the nagging fears and what-ifs about c-diff being back or whatever else (haven't gotten my Covid test results back yet). Will have to just see how the coming days/weeks go. Thanks to everyone for the support - I know I'm not alone in my ups and downs and fears. I hate so much the feeling of not being able to trust tests and doctors due to past experiences - I need to jump off the worry carousel for a while if I can :/

[Ali-Mar]

That is great news, the negative Antigen means no chance of relapsing ever again.. I would be latterly celebrating. It is very unlikely the sample was bad specially since you froze it, If you worry too much and can’t overcome the thought of the bad sample etc, just test again for peace of mind, it is worth the trouble if that is what it will take

Moderators note
A negative test, even the antigen test, does NOT mean there no chance of future relapses or infections.

[beth22]

Frozen is fine. Some labs request you to do that anyway. I just read that there is an outbreak of salmonella in 23 states, including mine. I am wondering if that is what I had after eating chicken. Did you test for any other pathogens?

[Elvish2]

Good to be aware of the outbreak - looks like it's in my state, too. They also did a stool culture for me that tested negative for Salmonella, Shigella, & Campylobacter.

[Ali-Mar]

I assume the chicken is cooked, so it would be hard to get it form chicken, isn’t it?

[beth22]

I got campylobacter from chicken before that was undercooked. I got sick both times I had eaten a chicken breast the night before from this same batch. They came 3 to a package. I just threw out the third one. I had them frozen. I tested negative for those pathogens too, but when I had campylobacter the hospital lab did not catch it, but it showed on Quest. Maybe it was just a small amount? I really don't know, but am wondering because I do not usually get D.

They have not determined the source of the salmonella yet, but I was told that 70% of supermarket bought chicken is positive for salmonella, so cook well, clean cutting boards, etc. Maybe it was in the preparation that I did rather than the chicken itself. I don't know, but I tossed the last piece just to be safe. Anyway, just a thought. You may very well have IBS.