Recurrent C.difficile

[beckman]

A year ago I came down with c.difficile and it keeps recurring with all its horrors including abdominal pain that won?t go away ? a really rough year. One Infectious disease doctor essentially said I shouldn?t go on antibiotics again until I?m nearly septic.
I?m working with another Infectious doctor on a fecal transplant, but apparently I need to stay off antibiotics for 6 months to a year if possible. And I also have had a recurrent EBSL ecoli UTI infection that he is also trying to eliminate.
Very discouraging. Anyone here dealt successfully with recurrent c.dif?

[annev308]

I spent 18 months on oral vanco for c diff. It started as a standard six week vanco taper and then every time something happened and I was off the vanco, the c diff recurred - thus the long long course of treatment. Along the way I started taking probiotics - they didn’t really have a chance bc vanco, but I did it anyway. I found them helpful, even if it was placebo effect. I still take probiotics and eat/drink either yogurt or kombucha daily. I test negative for toxin and on PCR. If I get it again they aren’t going to bother with antibiotics - it’s straight to fecal transplant.

[beckman]

thanks, what is PCR? Have you had to take antibiotics since the 18 months on vanco. The pain and anxiety are getting to me, keeping me pretty much housebound.

[annev308]

PCR is Polymerase Chain Reaction - it shows tiny segments of DNA, and is one of the ways they test for c diff and determine what type it is. So my test results mean there is neither c diff toxin nor c diff bacteria in my system.

I have been on antibiotics for other stuff (hello, sepsis!) in the last 5 years but the c diff has never recurred. That much vanco for that long pretty much eradicated the c diff along with all of my intestinal flora.

[xsfxsf]

Do you know how you were first infected with it?

[annev308]

I got it in the ICU after my initial injury. The strain I had had the binary toxin, was resistant to flagyl and moderately susceptible to vanco, which is why I was on the vanco for so long. The timing was particularly bad - it was right after they closed down the fecal transplant study for being too successful and were developing some kind of standardization, and fidoxamicin was wicked expensive so I had to fail vanco multiple times to get it paid for. I never failed vanco completely enough - as long as I was on it toxin levels and population estimates dropped steadily so they just left me on it for a long long time. Oral vanco is comparatively cheap and it did ultimately work.

[triumph]

Had cdiff twice due to antibiotics for medical issues. The first attack was 10 years ago after hospitalization for pneumonia and several antibiotics to treat it. That cdiff lasted almost 5 months until the dose of Vancomycin was doubled by a thoughtful doctor. Once it was doubled to 500mg the cdiff was gone in one week.
This year I had antibiotics for a serious issue and developed cdiff in about 6 days and had to be hospitalized because of severe weakness from the cdiff. After the hospital started Vanco (yes, now they gave me the double dose), I began to respond after 9 days; I went to a rehab center for 3 weeks, continuing on 500mg. I literally had to regain my ADL skills and worked like a dog to do so. (P.S. once a nurse came in to give me my dose and it only contained 250mg - I told her I would not take it as my dose was 500mg. She argued with me and I told her to go back and check my chart. She corrected the dose).

I'm just saying the double dose of Vanco worked for me. You would need to discuss with your doctor. Apparently there are side effects from it.

I now take two probiotics pills daily and plan to continue. By the way there's an interesting book, Gulp, by Mary Roach, in which one chapter deals with the digestive system. I now get the picture that in the gut there's a civil war going on between good flora and bad and my probiotic is my secret weapon to keep the peace.

[SCI-Nurse]

There is a serious problem now days with strains of c. diff. that are resistant to both Flagyl and Vancomycin, which have been used for years. There are a few newer drugs that may be used when these drugs fail to cure c. diff., such as Fidaxomicin (Dificid) . Fecal transplant is now days saved as a last resort, and done most often with oral capsules instead of the old methods of NG tube or enema administration.

https://www.cdc.gov/cdiff/index.html

Be sure your treating physician is following these guidelines for management of any c. diff. infections:

https://www.idsociety.org/practice-g...ium-difficile/

(KLD)

[Brent K]

I read an article recently that recommended what triumph stated, double up on vancomycin. There is a stool bank in Massachusetts that your doctor can order capsules or stool samples to be administered via enema. https://www.openbiome.org/
When you get over it, stay on a good probiotic. I didn't and ended up with it again after being prescribed cipro 6 months later. I have drunk kefir every day since. I was treated for sepsis 4 years back and didn't even experience loose stool.

[Brent K]

I read a blog recently, the lady was dealing with recurrences, too. She got a stool sample from her 11-year-old daughter and did her own enema. She stated that she felt normal the next day. Why they don't use FMT sooner, I don't understand. 70 to 80% of infections treated with antibiotics have recurring infections. 80 to 90 % treated with a FMT don't have recurring infections. That's what I have found online.

You can find videos on youtube of people giving their step-by-step method on how they do their own FMT. The first one that I found, the guy had ulcerative colitis and he used FMT to control it. He found a donor and had his stool screened for any blood-born illnesses and everything else that might be passed on. There is a website, cdiff.org It's a support group, I joined it when I was sick. One member had Crohn's disease along with c-diff. After having a transplant, her Crohn's went into remission

Check out the stool bank's website. They are supposedly doing studies on using FMT to treat almost all autoimmune illnesses. There is an article floating around on the web that stated that FMT reversed 50% of the effects that comes with autism. It stated that a lot of autistic children have gastrointestinal illnesses and that the FMT took care of them.

[SCI-Nurse]

I would caution anyone from attempting self-treatment of c. diff. Having seen a number of SCI/D patients nearly die from fulminating c. diff. infections with ulcerative colitis that could not be controlled, it is important to seek traditional, but updated treatment, under the advice of an infectious disease physician as soon as you are diagnosed.

(KLD)

[beckman]

PCR is Polymerase Chain Reaction - it shows tiny segments of DNA, and is one of the ways they test for c diff and determine what type it is. So my test results mean there is neither c diff toxin nor c diff bacteria in my system. I have been on antibiotics for other stuff (hello, sepsis!) in the last 5 years but the c diff has never recurred. That much vanco for that long pretty much eradicated the c diff along with all of my intestinal flora.

Sounds like you got specialized attention. That’s great it eventually ended for you after all that time, gives me hope.

There is a serious problem now days with strains of c. diff. that are resistant to both Flagyl and Vancomycin, (KLD)

Yes c.diff is a beast. Other than my initial injury time this has been the toughest year of my 46 years dealing with SCI. I’ve lost some 50 pounds. What with the diarrhea (and for me the worry/anxiety of diarrhea happening if I go out) and the constant abdominal pain. I’m also struggling with a recurrent UTI which the treatment of caused the c.diff. Don’t know how they can be treated together.

I really appreciate this forum and the smart people on it who give some hope in what is otherwise a discouraging time.

[Brent K]

I didn't know that links weren't allowed. Openbiome is the business in Massachusetts. It has been at least 12 years since my last infection and I still have stomach problems. I take dicyclomine for spasms and try to stay on a fodmap diet.

[SCI-Nurse]

I didn't know that links weren't allowed. Openbiome is the business in Massachusetts. It has been at least 12 years since my last infection and I still have stomach problems. I take dicyclomine for spasms and try to stay on a fodmap diet.

Who told you links were not allowed? As long as you are not profiting from the business you are linking to, both legitimate and snake-oil links are open game here!

(KLD)