Newly diagnosed/finished med no change

[TK17]

I was diagnosed with cdiff 2 weeks ago. I am a 60 year old female with autoimmune diseases. Symptoms developed the day after I received my 3rd COVID vaccine. I had 100.5 fever, chills, bad headache like I was hungover (hubby had this after his 2nd vaccine), achy like I had the flu and this horrific lower abdominal pain that literally had me groaning and bent over and diarrhea. All symptoms lasted for 2 days then went away. I was symptom free for 1.5 days then the d started again. I got an appt with my internist and she tested for cdiff (using a clostridium difficile cytotoxicity assay test) and it came back as "detected". She put me on vanco 125 4xday for 2 weeks. My 14th day is tomorrow and I STILL have d. I contacted her and mentioned the dificid and taper that I've read on here. She sent in a prescript for dificid but I don't know what the instructions are yet as I have not picked it up.

I'm thinking I got cdiff several months back and didn't know it. I knew something was wrong but hadn't gone to the doctor. For months now I would pass gas but a ton of mucus would come out. I would literally have to change clothes. It wasn't all the time, just occasionally. I thought maybe it had to do with something I ate or that I had UC. I've taken a lot of antibiotics this Spring; 3 bladder infections, a total hip replacement, plus amoxicillin for dental work because of the hip replacement. The week I was diagnosed with cdiff I had just taken the amoxicillin and a round of antibiotics for a bladder infection back to back.

I'm VERY concerned because it doesn't seem that the vanco did anything to help. I don't want to go round and round with this taking meds and worrying. I'm wondering if I need to go see my GI doctor or have my internist order a more sensitive cdiff test to see what strain it is. Or does it even matter what strain because the meds/protocol are the same? I also keep reading how people lose so much weight with this. I'm not eating much at all, crackers are the most appealing to me, but I haven't lost any weight, however, my stomach seems very bloated (and sore).

Just looking for some feedback and information. Thank you!

[beth22]

Hi TK17 - Welcome to the site. You can find more information for new posters in the first forum.

I'm sorry that you are going through all of this. It does sound as if you got the c diff after all of those antibiotics. While Covid shots can give D, they won't cause c difficile. My husband and I got some looser stools with our shot as well. What is surprising is that you are still having the D even with taking the vanco. Are you still having the mucus too or just loose stools? Some people do get looser stools on vanco. I would probably see a GI to see if there is anything else going on. Sometimes c difficile can make you lactose intolerant or give other food intolerances, but if you are having these symptoms even with just eating crackers it should be checked with a GI. I do know a few people became gluten intolerant for a while.

If you test while on antibiotics, the test won't be accurate anyway. Dificid is taken twice a day as far as I know. I don't think it matters what strain you have because my understanding is that the treatment is the same.

I got SIBO on top of c difficile or because of it. That gives D and bloating as well. As I said, best to make an appt with a GI.

[roy]

Testing positive for c. Diff might just be coincidental although your recent history does indicate your a prime candidate for it.
If vanco does not resolve the symptoms its a strong indication that its not C. Diff that's causing them, or that C. Diff is not the only cause.
Your longer term symptoms and conditions are worrying and Definatly indicate that you need to see a GI.
Testing to indicate what strain is never done (except to provide scientific data) as the treatment is standard for all strains that cause disease.
Don't wait to see if Dificid works, book in with a GI now.

[TK17]

Roy & Beth,

Thank you for the replies and info. I never seemed to have mucus ON my stools (prior to cdiff) just when I thought I was passing gas a TON of mucus would come out. No mucus in diarrhea, first just the pudding type and now it's powdery. I first thought the d was from the vaccine as I read Pfizer could cause d, but after it lasted a week I knew that wasn't it, just a coincidence. I also ate what I think was some bad sashimi the same night (waaay too many possibilities for the issue!). It was mushy instead of firm and I knew better but ate it anyway. I thought I had a reaction to that but dr did some tests and they came back negative. The dr mentioned possibly diverticulitis before the cdiff came back positive.

I will definitely make an appt with the GI. If I've had cdiff all this time (months going back to the mucus), would that be a cause of me not seeing any improvement with vanco (meaning I've had it for so long it's a bad case)? Is it unusual to not have ANY change with vanco?

Also, is this a "disease" meaning I will always have it versus just a virus that goes away with meds? That's a scary thought and the LAST thing I need with my medical history. :( At LEAST I could get some weight loss for all my suffering!! I'm not overweight, just wanting to lose a few lbs. gained from my meds.

[beth22]

The vanco would still work for the c difficile even if you had it for a long time. It does not work on other types of bacterial infections, so if you had some other pathogen, it would not work, but with all the antibiotics you took, I think it is unlikely that you have another bacterial strain. A good GI doctor can sort it all out, but I would make an appointment.

[TK17]

Beth

Thank you for the reply. I have an appt w the GI dr Oct 5. I’m picking up dificid today.

[TK17]

It’s now been 4 weeks of d, one round of vanco and I’m halfway through the dificid-5 more days left. Still have stomach rumblings and d. So frustrated. I have an appt w the GI dr next week. At first when I called they didn’t have appts for 2 months. I told the nurse I was afraid I’d be in the hospital by then and she got me in. In reality, I’m getting around & doing things normally. I just don’t want d for another 2 months!

Has anyone had cdiff and taken a full round of vanco and 5 days of dificid and STILL had d??

[beth22]

Some people get D from vanco and some from Dificid, but the GI needs to see if there is some other reason for it. It wouldn't be c dificile because the meds would kill the bacteria while you are on them. I became lactose intolerant and when I stopped eating yogurt and milk products, the D subsided. Another possibility is if you have another pathogen along with the c difficile. Neither vanco nor Dificid would work on something like e coli for example. Write down your history and questions and take it to the doctor's office so that you don't forget to mention anything.

[roy]

Depends what you are considering D to be.
One poster described c. Diff D perfectly as..
"I have an involuntary waterfall flowing from my butt several times a day".
Is that what your experiencing?
Also you said
"I’m getting around & doing things normally."
Doubt full if anyone could do that with active c. Diff.
Most are too frightened to move more than a few feet from a bathroom.

[TK17]

Thank you Roy & Beth for the replies.

I haven’t had waterfall d since before vanco. I went from waterfall and pudding to where I am now. I have pudding type stools or flat bark looking type stools (about 1x1”) anytime I eat anything or drink more than a few sips at a time. I go probably 8 times a day. If I don’t eat or drink then I don’t seem to have any poopy issues. I’m always scared to eat or drink anything and if I do I make sure there’s a bathroom nearby. At night my stomach is rumbling loudly.

I say I’m getting around fairly normally-that’s if i don’t eat or drink more than a few sips. Within 30 min to an hour after eating, I’m on the toilet.

Just wondering if anyone had any other ideas what this could be so I could bring it up with the Gi dr. I’m going to make a timeline for him to hopefully figure this out sooner than later.

I thought I remembered somewhere that Roy said just because you test positive for cdiff doesn’t mean you have it or something like that. That a lot of people just carry cdiff.

[beth22]

Yes, you can carry c diff. I am considered a carrier now that I have had it, for example. When I was on vanco, I had much more frequent stool than my normal. It's been a while, but 6 or 8 sound about right. Dificid can be rough for some people too. I would ask the GI if you should do a stool culture for other pathogens as neither vanco nor Dificid would work on most of them. Also, see if you have developed gluten intolerance. A few people do. I developed lactose intolerance. I also had elevated pancreatic enzymes and a few low vitamin levels. For me it was vitamin D and A and I was low on B12 as well. Some posters got low potassium. Maybe ask if you could have your levels checked. I know when I started taking vitamin D, my stools firmed up a lot.

[TK17]

I had my appt w the GI dr. 3 days before I finished the difficid. His course of action is:
1. Finish the dificid
2. Take probiotics for a couple weeks ( I’m also adding Lifeway Kifir) to get more good bacteria
3. If I’m still having d then I’ll take Flagyl. I mentioned I heard that it wasn’t being used anymore and his response was that it’s something I haven’t had yet or he’ll try a vanco taper or I’m doing one then the other. I’m not sure
4. If I’m still having issue then he will do a GI test to see if something else is going on and retest for cdiff. He performed my colonoscopy 3 years ago and said everything looked good then. My internist has already tested me for salmonella/shigella, campy eia & shiva toxin w/rfl E. coli. All negative.
5. Lastly, I will have the fecal implant as a last resort. No pill it’s done as a procedure like a colonoscopy.

I’m having small hook like stools 1st thing in morning, & multiple times a day and today, twice, I had d hit me so quick I didn’t make it to the bathroom on time.

My vitamin D, b2, potassium, calcium, magnesium, etc was tested and all is good.

I’m sooo confused. Before at least I could feel it coming and make it to the bathroom on time. Today I couldn’t.

Just looking for some thoughts. Thanks!

[roy]

Personaly I would agree to a vanco taper or preferably a Dificid taper/pulse.
As for flagyl Noooooooooo!

[georgina]

I too would do the taper of Vanco or , even better , of Dificid . Many of our posters have complained that Dificid was very dificult to tolerate but as they finished the course they felt better , and lets not forget that the cure rate is higher because it targets only clostridia species and it doesn't touch the good flora , unlike Vanco or Flagyl. Why on earth would someone want to follow up a course of Dificid with Flagyl , a drug that isn't even approved as a Cdiff treatment , not to mention the side effects and the fact that kills a lot of healthy gut flora! I would definitely NOT take any of that Flagyl and would push for something that has a higher cure rate , like a Dificid taper or the FMT which is the most effective treatment ever.Also , be careful with the amount of probiotic you take per day , they can also give u discomfort and more frequency.

[roy]

I think you finished Dificid 5 days ago.
Your still healing!
If your not having watery D at least 3x3 then all is probably well.
If things get worse see your Dr.
Don't test to see if it's gone but if you have ongoing WATERY D then test again before considering more treatment.
It's best to wait at least 10 days after finishing meds before testing as that allows time for dead c. Diff to clear and active c. Diff to become detectable again.