Tested positive again after 4 years

[ResearchGrandma]

If you and your doctor decide to treat with antibiotics, maybe you could go straight to dificid - targets C. diff better than vancomycin. I am not medical doctor, but it seems that by just treating with home based FT (without pretreatment with vancomycin) you are just preventing the C. diff from overgrowing, but not getting rid of it. So possibly you have a reservoir of C. diff cells/spores that periodically reactivate and cause problems . Since you have had success with home FT, you could perhaps take dificid and then follow-up with the home based FT.

[beth22]

Sorry to hear about the MRI non-authorization. I had that happen on some test before and the doctor appealed it and it was authorized. Hopefully, that will be the case with you. My lower back MRI showed lots of problems, but I can deal with them when the pain gets worse. I never took clindamycin - it was Cipro that got me started with the c diff - twice!

I think I may be colonized with the spores, ResearchGrandma. I have spoken to my ID and he said as much. I'm supposed to call him back on Friday. Yes, I was thinking the same thing about Dificid if I get a full blown infection. I think the reason that I tested negative all of these years is because I was on a small dose of Pepto Bismol and it suppresses the spores, but I can't take that for the rest of my life. I stopped it in August. But in the middle of November my mom was hospitalized and after I am thinking that my time in ER with her and on the floor (she was on a GI floor, I believe for possible intestinal blockage) may have given me a new infection. It is impossible to tell. As Roy said, maybe my body is fighting it off. I sure hope so!

[Dobies#1]

Beth, it stinks you tested positive after all these years. I'm still only familiar with what my doctor's have told me. But doesn't it take antibiotics to reactivate the spores? Do any of the antibiotics for CDiff actually kill the spores? Or do they just "hold off" the infection? Do your doctor's think the antibiotic you took several months ago may be the culprit? It just seems crazy that you may have got it from visiting your mom at the hospital, since I'm sure you were so careful. I hate it for you. Keeping you in my prayers that you don't get worse. HUGS

[megan2]

I got c diff from being in an emergency room . Then 2 weeks later I took a amoxicillin 2 pills having a tooth pulled) and activated it. . Here I am a month later not able to get rid of this horrible c diff which is destroying my life.I am so weak I can hardly walk. I think you can pick up c diff visiting a hospital or a nursing home from what I hear. Its unusual but it happened to me .

[Bobbie]

Megan,
Sorry for your problems. The site is full of rare cases. You will get better - honest. If you aren't already seeing a GI or ID, so so. They are more familiar with C. diff. than "regular" docs.

[beth22]

Saw GI and he said not to treat with antibiotics, but rather to test my donor and do some FMT enemas at home. Stool samples have been sent for testing. Have to do it before January 12th, as donor is going out of the country. Meanwhile, have my husband home with a terrible URI and am hoping and praying not to get it. The doctor gave him a Z pak to take and he started it against my advice. I told him to wait a day to see if he improved. He mostly has laryngitis and that is usually viral. But, any time he gets fever, he gets really nervous. If he had to deal with all the stuff I have had to deal with with c diff, he would think a little harder before jumping to take antibiotics. Hopefully, he will be ok.

I also spoke to my ID. He thinks that I am probably colonized, but as long as I don't get D, he too, would not treat. He is neutral about doing the FMT. Says it won't hurt and do it if I want to. I think all of these symptoms that I have been having for years are because I never got rid of this completely and every time I get run down and my immunity goes down, I get a low grade relapse with spores activating for a few days. When I first had c diff, before a relapse a few times my pancreatic enzymes were high too and I would not be surprised if this is not the cause. H pylori can elevate the lipase levels and I bet c diff can too. I wish more research were done about some of these other effects.

What worries me is that it probably is in my small intestine. I tested positive for SIBO, but the test does not tell you what bacteria it is. I know I have some yeast, but I think some of it is c diff and how do you get rid of it in the small intestine?? FMT only treats the colon, but most of my symptoms are in the small intestine. It is really disturbing. I sure hope someone out there is working on a way to kill those spores.

[getwellsoon]

So glad you don't have to do the ATX for CDiff but are you still considering the Xifaxin? I took this and although I got D the first day, after that I felt much better and my stools were the best they ever were on any med. I would really consider it and maybe it would help the SIBO. You are in my prayers and hopefully feel better soon. My husband takes ATX and never gets any symptoms. He just took Amoxicilin for tooth issue and so far he is fine. He gets mad when I worry so much so I keep it to myself now. Oh what I wouldn't give to be him and go back to blissful ignorance of the damage taking an ATX can do. Happy New Year Liz and hang in there.

[roy]

If you test positive but you don't need treatment that's probably the best possible scenario!
It means your immune system it dealing with it.
Sounds like your Drs have given good advice.
HOORAY for immunity because that's why one day a vaccine will be possible.
Taking another antibiotic is another matter though, that could destroy your natural immunity and allow c.diff to multiply and then it becomes a disease.

[Rane]

So what I'm getting from this is if you aren't having D, you can fight it off without treatment? That's new!

[megan2]

I didn't have D and they gave me meds.

[pinkangel]

Some people can fight it off without antibiotics. The doctor should look at the whole picture. He can check wbc and other symptoms. Sometimes if the offending antibiotic is stopped then our body will fight the infection and get better. There are atypical cases where the other symptoms are severe and a doc will treat if you do not have D.

[beth22]

When I first was diagnosed with c diff, I did not have D, but did have a ton of M and some B. So, I was treated. I always wondered if I had only taken probiotics if it would have resolved because the year before I had the same symptoms except not so much M and it did, but it took a while. I just found out my husband is negative - good because he is on Z pak and so is my daughter. She came over today and I just did the first FMT enema. I'm hoping I only have to do 2 or 3. I did not prep with anything. Gi said not to - not even a bowel laxative. Hopefully, that will be all that is needed.

[seekingcure]

I sure hope the FMT enema will do the trick for you, Beth. Does your husband take probiotics when he is on antibiotics? My husband took them while he was on Z-pack and Levaquin for pneumonia last winter and he was fine.

I just started on Xifaxan today. I have been afraid to try it, but I am desperate for some relief. I had watery diarrhea all through Christmas but tested negative for c-diff the Monday before Christmas. Hopefully the Xifaxan will help me some and won't cause more problems. Carol, did you take probiotics while you were on the Xifaxan? I'm thinking I will leave off the probiotics, but continue with the s. boulardi.

I sure pray that we can all get well in the new year!

[beth22]

When I took Xifaxan, the doctor told me not to take probiotics. It gives me D, but I found if I took a Tums with the pill, it didn't, so that is what I did. But, after I finished, I started on probiotics. I sure hope it helps you. It did help me. I felt worse on it, but when I finished, the stool was better than before I started and I had fewer food intolerances.

Yes, my husband is taking Bio-K plus with his Z pak and will continue for a while after he is done since Z pak stays in your system for so long. But, at least he tested negative for c diff. That is a relief. I wouldn't wish this on anyone.

[getwellsoon]

Yes I took probiotics with the Xifaxin. My GI Dr. has me on them for life. They are just part of my normal routine now. I hope they find out soon if they really do anything because it would be one less pill to take. Hope everyone is feeling better and we all have good health next year. Oh, my MRI was approved and scheduled for Dec. 31. Hope they don't see any surgery in my future.