Vancomycin taper, CDiff, and probiotics - CLL Support

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Vancomycin taper, CDiff, and probiotics

Butitisme profile image
8 Replies

I've had C-Diff two months ago... have waded through Vanco and probiotics... and wondering if any have had recurrance experience of CDiff... so afraid I will get it back after two months of medicating.

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Butitisme profile image
Butitisme
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8 Replies

my wife had it 3 years ago. has not had re-occurance

bigunwill2 profile image
bigunwill2

I had in December after taking 2 rounds of antibiotics. I made sure to clean everything with Clorox wipes.

I have not had any reoccurrence.

narl profile image
narl

My dad got c-diff about 8 years ago, I didn't think they would ever get rid of it, and Vancomycin at 700 a month co pay was ridiculous, he was hospitalized twice, I started reading up on c-diff online and found out it was common in aids patients because of antibiotic use, and they were given Saccharomyces boulardii to get rid of it. I found an organic pharmacy that carried it and he started taking it. I am convinced it is the thing that got rid of it for my dad. He always kept a bottle of it in the refrigerator just in case, but it never came back, he also stopped taking antibiotics every time the nurse practitioner gave them to him.

AussieNeil profile image
AussieNeilAdministrator in reply to narl

Saccharomyces boulardii has been shown to inhibit C-diff in in vitro studies, but unfortunately I couldn't find any papers showing that it did work in vivo. We really do need better proven C-diff treatments.

pubmed.ncbi.nlm.nih.gov/206...

pubmed.ncbi.nlm.nih.gov/197...

I appreciate that your father did not want a repeat C-diff infection, but he also didn't have CLL. For any of our members to not take prescribed antibiotics could be potentially fatal - I've had my life saved several times because I accepted antibiotic treatment.

Neil

narl profile image
narl in reply to AussieNeil

That’s true he didn’t have CLL but had a lot of other problems and every time he had a runny nose the nurse practitioner was giving him antibiotics which he did not need. Too many doctors here wanted to hand out a antibiotic for everything a few years back I think they’ve gotten better on it, but they were terrible for a while.

winterwild profile image
winterwild

I had C-diff 3 weekends in a row. Was taken by ambulance to hospital on the 2nd weekend, where it wasn’t diagnosed. I was given more antibiotics on leaving hospital but they just didn’t feel right so I stopped taking them. I rang a nurse friend that week who suggested C-diff. When I googled it I knew that is what it was. On Saturday night it came back again and I was able to ring my local Dr the next day who happened to have 4 tablets of Flagyl. I had almost instant relief from this medication and continued with Flagyl after having my second stool sample come back positive. The whole experience was truly horrible and I was very cautious of having too many antibiotics again for a while afterwards. I have since had numerous antibiotics and thankfully it has never returned. The only positive thing about it was mentioning in hospital that I had had it got me a single room. No one else in the family contracted it from me. It is something that I never want to experience again.

WW

narl profile image
narl in reply to winterwild

I know that, my sister always worries about it now when she has to take an antibiotic . Previously to my dad getting it we had never heard of c diff. My dad had that so bad I really thought it was going to kill him. The strange thing was in the small town he lived in the closest hospital is small but they always made you get suited up, wash hands and went through a lot of protocols for us to even visit him, discard gowns and masks shoe coverings and wash hands again when leaving , but when we brought him to the city thinking a bigger hospital would be better they took zero precautions. They had a lot of people on the floor with it also and they would not even wash their hands when they left the room they would use alcohol sanitizers, which from online we read would not kill C diff. It was a scary experience. Hope you don’t ever get it again.

Butitisme profile image
Butitisme

Thank you all so much for your comments... I am nearing the end of my vancomycin, which seems to have it in control... but my bowels are tender, and I won't be surprised if it comes back on me... I've taken vanco for 65 days now, and am so wary of ending it... that the C-D will come back...

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