At what point are you "safe" from relapsing?

[NS789]

Hi all,

Is it true that it takes 8 weeks after completing treatment before you can confidently say that you're safe from experiencing a relapse? It seems like such a long time. What are your thoughts/experiences?

Frankly, based on my recent experiences with 4 relapses, I'll be happy just to get past the 2-week mark without a relapse. That seems to be as far as I've gotten since this all started.

I just finished a 5-week Vanco taper on Thursday (July 16th) and I'm trying to figure out what date I should hope to reach before I can consider myself free of this beast! Since finishing the taper, I have had a couple of bad days but I'm trying to stay calm and consider the fact that it may be IBS. Recurrent c diff is so taxing on the mind. Every symptom and every bad day sends me into a tailspin of worry.

[Ali-Mar]

NS789, I know exactly what you mean, it is an awful feeling, I feel I can't get this beast out of my mind and out of my gut...

Based on the following CDC page ( lfie after C Diff) the relapses are 2-8 weeks after treatment.

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

Which is been true in my cases... I relapsed 5 weeks after 10 days of Vanco.. and when I was on Dificid taper I relapsed while on the taper about 4 weeks after I finished my regular dose so I went back on two-pills per day again .. and relapsed again 2 weeks after completing the Deficit.

Now am 8 days post my last Dificid pill which was the day before the FMT, and I feel I might be relapsing, I should know in next few days

[beth22]

It varies for people. I had relapses as late as 4 months later after a vanco taper and Xifaxan chaser years ago.

[Ali-Mar]

is it a relapse of the original infection though? 5 months later? it sounds like more of reinfection, maybe from old spores that were still on surfaces? unless the gut flora was compromised again 5 months later and you relapsed?

[Caligirl]

Different doctors have different time frames that they use. Mine said that a relapse after 3 months is rare, but definitely still possible, and that 6 months is what he considers to be the time that is safe from relapse. It’s true that most relapses happen within the first few weeks, but there are definitely people that have had relapses 3,4,5 months out.

[beth22]

For me it was a relapse. I had low grade c diff for a long time. A doctor up in Canada tested my stool and found that I had 100,000 count per gram if I remember correctly and apparently if you have a million per gram it is an active infection. So, yes, my spores must have seen the opportunity. I am colonized at this point anyway. When I had antibiotics 4 years ago about a month later, I tested positive again, but did not treat as it was mild.

[georgina]

I have relapsed full blown ,6 months after my first FMT done trough nasogastric tube, but during those months i have never felt well so i actually think that i have never been cured . I was tested a few times trough EIA for toxin A/B (PCR not available where i live and GDH available after a few months) and those tests were not very accurate , and was negative but kept having mild symptoms but was getting used to having them so i didn't panic until the day where it came back full blown (frequent D and M,every 15 minutes) and ,as you can imagine test was positive and had to start Vanco. After my colonoscopy FMT was also rough (D , and all that ) but this time i was tested trough GDH (high accuracy) along with toxins and GDH was negative , so clearly Cdiff was out of the question but symptoms were still there so i went to more doctors and finally another condition was found , had surgery and after the surgery the bad IBS had finally settled down.I still get IB attacks ,here and there , depends on what i am eating but nothing like i had before.

[Ali-Mar]

I read the EIA Toxin test has only 75-80% accuracy rate, meaning it is false negative 20-25% of times. My first test was EiA toxin and GDH Antigen and both were negative. 4 weeks later they did the PCR Toxin B Gene test as I sill had all the symptoms and it came back positive.

When I contracted C Diff, only for the first 3 days I had watery d over 15 times per day, after the 3rd day it subsided to 4-6 times bm per day and mushy bm instead of liquid, mucus started 3 week later... it went on untreated for 5 weeks as we didnt know what it was,

[poppy86]

I had no idea relapses could still happen so many months out. That's very eye-opening.

[NS789]

Yikes. I didn't know you could relapse six months out. That's scary but good to know. Thanks everyone for sharing your experiences!

[Bobbie]

All three of my relapses were linked to antibiotics (pneumonia, UIT's) and occurred two months after stopping Vanco. I have taken a Z park several times without a problem- also Macrobid.

C diff is a very individual disease and perimeters often don't work.