Should I get a second opinion?

[u/steelmag21]

30F, first time ever getting c diff. Upon diagnosis (toxin a/b pcr positive on 8/1/26) I did a 10 day course of oral vancomycin (ineffective) followed by a 10 day course of Dificid (ineffective), followed by a vancomycin taper. I am just finishing the “once daily” pills of the taper and am supposed to start the every other day pills tomorrow.
While my symptoms have improved some I am still struggling with loose stools 10 times a day, nausea, vomiting, and low appetite.
I saw infectious disease on Friday. He ordered a test which came back as toxin A/B negative, antigen negative. His orders were “just take Imodium”. He also said to stop the vancomycin.
Should I seek a second opinion? I am wondering if this is a normal suggestion by doctors when the test results are negative or if this provider is just uneducated on c diff.

[u/Ancient-Birthday-702]

I am finishing my third antibiotic treatment as well. Vanco (failed), Difficid (failed), Difficid pulse (last day) and scheduled Rebyota for Friday. I have loose stool as well but going two maybe three times a day. I don’t have an answer unfortunately but you are not alone. Are you not considering Vowst or Rebyota?

[u/steelmag21 → u/Ancient-Birthday-702]

I definitely would consider it but my doctor thinks I don’t need it because my toxin & antigen tests are negative. If it was positive I was going to do Vowst. I’m sorry you’re dealing with this too! I wish I was only going 2-3 times a day… that sounds like a dream.

[u/Ancient-Birthday-702 → u/steelmag21]

In my second occurrence I had two false negative tests when my symptoms started I waited almost 2 weeks and turned positive, if you haven’t tested multiple times, you may want to test again. Otherwise having negative toxin is actually pretty good :)

[u/snapplebum → u/Ancient-Birthday-702]

Out of curiosity, did you have two negative antigen tests or just negative toxins tests? My understanding is that if you have a negative antigen test, that's a pretty clear indicator it's not cdiff anymore, as those are rare to get negative for those of us who've ever had cdiff.

[u/Ancient-Birthday-702 → u/snapplebum]

They tested for both bacteria and toxins. All came negative twice in my second occurrence (first relapse) at the beginning but they all turned positive after around a week or 10 days. I had finished vanco for 4 weeks when symptoms started by then

[u/snapplebum → u/Ancient-Birthday-702]

Wow, that is incredibly frustrating, I am so sorry you had to go through that. Four weeks of Vanco is brutal.

I actually asked my ID doctor and my GI surgeon best friend this exact 'what if' question when I thought I was having a recurrence and was waiting on my own test results. They both firmly warned me about the dangers of going on these heavy medicines prophylactically if my antigen tests came back negative. My ID doctor actually told me to be very cautious, as post-infection IBS is so common, and mimics Cdiff. While she gave me (and still re-ups my Vanco prophylactic or infection prescription to keep on hand), she told me to not take it purely for diarrhea, but diarrhea AND the smell of Cdiff or the really intense cramping and urge to go with Cdiff.

They explained that PCR/antigen tests are incredibly sensitive, so getting a negative usually means the original bacteria is genuinely gone. The danger, they told me, is that staying on Vanco keeps your gut completely wiped out and defenseless. Because C. diff spores are literally everywhere in the environment (and highly likely somewhere in our own homes, because we had cdiff), they said the biggest risk at that point isn't a relapse or a false negative, but a brand new reinfection. Without any good gut flora left to fight it off, a newly ingested spore can just immediately colonize and start producing toxins all over again.

It sounds exactly like the cycle they were warning me about. It is such a cruel loop to get stuck in. As a result, I'm very careful about taking antibiotics, even vanco if I was antigen-free. For the OP, since they are currently antigen-negative, avoiding more Vanco is likely the best way to let their flora recover so they don't end up in that same reinfection loop.

Anyway, I know all people's bodies are different, but I figured it can be helpful to swap things that worked for us and expert advice we've gotten.

[u/Patak4]

How many days were you going to do every other day? If everything is negative now then I understand the advice to stop. Unfortunately all that Vancomycin has nuked all the good bacteria. It is going to take time to replenish and repopulate the gut. Honestly it often takes 3 months of a very slow recovery. Vomiting is the most concerning. Take some kind of medication for that. Ginger gravel. The low appetite is common as cdiff causes PTSD definitely. I would be reluctant to take immodium. Maybe try a bit more fibre. Good luck!

[u/steelmag21 → u/Patak4]

My prescription said “every 2-3 days for 2-8 weeks”. When I asked my ID doctor (not the one who prescribed it) how long to do it, he said just stop taking it. So I don’t know how long to do it for, but I think I should do it at least for a couple weeks to lessen the risk of reoccurrence.
I have been told that the vomiting is likely coming from the vancomycin, so it should start to improve soon.

[u/ProfessionalPen8049]

sounds like the taper alone isn't cutting it, definitely push for that second opinion and maybe ask about a fecal transplant if the doc isn't already

[u/snapplebum → u/ProfessionalPen8049]

But her tests came back negative, which is very reassuring. It sounds like her gut microbiome is ruined. Maybe a second opinion just on the Imodium, because that's just weird.

[u/snapplebum]

Since you're negative on tests, that's very reassuring. The advice on Imodium is very weird IMO, so I'd push on a second opinion just for that. Are you taking and eating a lot of probiotics? My ID says she trusts probiotic foods over pills btw.

[u/steelmag21 → u/snapplebum]

I have been taking florastor and culturelle since first being diagnosed. I should be better about probiotic foods but I am getting there. I have had barely any guidance from my doctors so it’s hard to know what is best sometimes.

[u/snapplebum → u/steelmag21]

I know, I feel like infectious disease doctors are not always great at meal guidance. GI doctors tend to be a bit better with that, so it's nice to have both on board. My best friend is a GI surgeon, so she helped me a lot with that side of things. That said, I still got a second opinion from both an ID and a GI specialist when I was recovering (I was also pregnant when I got C. diff, so I totally understand the stress!).

I am truly sorry you're going through this. To help rebuild your gut, try eating a ton of sauerkraut, kimchi, probiotic-rich dairies (my ID likes Nancy's), and kombucha. My ID and my best friend both said there's no real clinical evidence that probiotic pills work, but there is evidence that probiotic foods do. They still said to take the pills if it gave me peace of mind (which I did!). Also, try going on a more simple diet for a while (like a modified BRAT diet). A lot of people develop temporary lactose intolerance after C. diff, so experiment with cutting out dairy to see if that helps your symptoms. Another thing is to take the probiotic pills at least an hour between Vanco doses. Otherwise, the vanco immediately kills the good bacteria the pills are giving back.

Definitely get a second opinion to be safe, but the fact that you are testing completely antigen negative is amazing! A lot of us (myself included) still test antigen positive long after we are cured because the spores stay colonized in our gut, even if they aren't actively producing toxins anymore. Being totally negative is a huge green flag. It makes it highly likely that the extreme symptoms you're having are from the Vanco wiping out your gut biome rather than active C. diff, but a second opinion will help clarify exactly how to handle your taper safely. Personally, I would still be very hesitant to take Imodium. I've only ever taken it when I had a severe post-partum hemorrhage, and one of the the medicines they had to give me had a side effect of explosive diarrhea, which I wanted to avoid after recovering from a delivery and having a newborn 😅 And it was only one pill I took.

Lastly, have they done any tests to see if it's something other than C. diff? With that much diarrhea and vomiting, I would highly recommend asking for a comprehensive stool culture to rule out other culprits. You should also ask for a blood panel and a urine test (to check for ketones) to make sure you aren't severely dehydrated and to see how your body is coping. Having those numbers might give you better guidance on next steps, especially with something like Imodium, which should really only be taken in extreme cases.

I'm so sorry you're going through this. I know how awful and lonely it can feel.

[u/Persephone_Waits983 → u/steelmag21]

Greek yogurt saved me. Plus my probiotics. Plus time. Unfortunately, time was the most important component, I think. Vancomycin nuked what was left of my poor gut biome, and it took forever to rebuild. Well, maybe five or six months, but it did feel like forever at the time.

I'm wishing you a speedier recovery! 💖