Thoughts on reoccurance statistics?

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sammyp
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Joined: Thu May 24, 2018 2:08 pm

Thoughts on reoccurance statistics?

Postby sammyp » Mon Dec 10, 2018 11:48 pm

Does anyone else wonder how accurate the statistics for reoccurances are? I think the current is 35% for first reoccurance and 60% for second reoccurance.

Seems like there's a trend with over testing and over treating. Is it possible the statistics skew higher because of this? I know a lot of people continue to test positive after treatment and continue to treat based on that result rather than symptoms. Just curious what everyone's thoughts were.

If this isn't considered appropriate general CDiff discussion, mods feel free to lock or delete thread :)

roy
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Re: Thoughts on reoccurance statistics?

Postby roy » Tue Dec 11, 2018 4:36 am

I think it's a very valid point.
I have watched the trends for 11 years and 10 years ago I noticed that relapses on Flagyl were common.
The medics now say the same but it took another 9 years for that to become "official".
During that time c.diff got a lot of press attention and drug companies put more $ into diagnosis than treatments.
PCR tests were introduced as normal routine and became highly sensitive.
What the Drs missed are the specific Instructions not to test formed stool and never to test to prove a cure.
That "rule" is a very important part of the diagnosis and is far more important than the positive test result.
C.diff has many strains but half of them are harmless, some are mild and a few will need treating.
Even having the most virulant strains in your gut does not indicate its causing a disease.
C.diff is NOT a disease, it has the potential to cause disease if the conditions for it to overgrow are introduced but nature has been dealing with that for thousands of years.
I definatly think statistics are being skewed by overtreating and over diagnosing in the community.
The underlying cause of peoples gut problems are being ignored just because of a positive test result and people that say they had c.diff for years before diagnosis are probably still missing the real reason for IBS.

sammyp
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Posts: 90
Joined: Thu May 24, 2018 2:08 pm

Re: Thoughts on reoccurance statistics?

Postby sammyp » Tue Dec 11, 2018 5:22 am

Excellent insight, Roy. Thank you for sharing. With as high as anxiety runs with CDiff, I wish more people talked about overtreating/over testing/etc. Being 4 months out now from active infection, I'll be here encouraging people not to test and not to treat in the absence of symptoms for reasons like the ones you laid out. Google searches are all doom and gloom when you just look at statistics and I think it's important to explore that even statistics can be less than accurate when taking into account that treatment guidelines are often not followed and reported reoccurances may not be reoccurances at all but PI IBS or other gut issues when based on just a positive test result. Thanks for sharing all your knowledge.

beth22
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Re: Thoughts on reoccurance statistics?

Postby beth22 » Wed Dec 12, 2018 2:19 am

I've been testing positive on PCR for over two years now - since I got out of the hospital in 2016. I get IBS symptoms sometimes, but not classic c diff symptoms, so my doctors have advised not to treat and I haven't. The lab that runs the PCR follows up with an EIA toxin test and those have been negative, so despite the positive PCR, they consider the test negative. I think more labs should do this to avoid overtreating.


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