Wife recently "beat" c diff but doesn't feel like a victory

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matthew8
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Wife recently "beat" c diff but doesn't feel like a victory

Postby matthew8 » Fri Apr 06, 2018 4:52 pm

My wife (32 years old) was diagnosed with c diff after a month and a half of struggling to figure it out. She had taken antibiotics in January for a sinus thing, then we went on vacation in the Dominican in February and we both got ill (and our daughter) with diarrhea. Although my daughter and I got over it after 2 days, she never did.

It was coming and going but not great so our family doctor prescribed cipro while stool test was being done.

Fevers started and worse BMs so we went to emergency and they did a test there and indicated no cultures or bacterial infections. So she stopped cipro and she was advised to do a c diff test.

Symptoms kind of went away and came back again and she did a c diff test in March and came back positive.

Family physician figured since she had it a while we went right to Vanco 125mg.

After 6 days abdominal cramps were worse, fever was worse, generally overall worse so we went back to emergency. They decided to double her prescription to 250mg. 6 days after that same story so we met the infectious disease specialist and she wrote a prescription for fidaxomicin (difficid).

2 days on Dificid and she developed Erythema Nodosum (lesion bumps) on her shins which might have been caused by the medication (we don't know for sure)

Back to emergency and they ran another c diff test and it was negative! GI specialist checked her out quickly and said she just has a seriously angry bowel and needs time to heal and discharged her.

Great! We can stop the medication! Maybe she just didn't react well to the antibiotics all this time.

Well 5 days later she is still having mild fevers, diarrhea (although less per day), sometimes 3 intense cramps a day, and night sweats!

GI said there isn't much he can check at this time (we've done CT scans, multiple xrays and all blood works, urine works etc) other than if we think it's really bad to go to emergency again and maybe they will decide to do an urgent care colonoscopy.

My wife and I think that's not a great idea at this time to flush her system in order to do a colonoscopy. But my God we are 2 very healthy people and this has certainly drained us completely. Canadian health care (in terms of going through emergency) is an awful experience. I'd drive to the Cleveland Clinic, or we know someone at Lennox Hill Hospital in Manhattan, but I don't think they would be able to do anything different for her unfortunately.

I couldn't find any correlation on Google about Erythema Nodosum with c diff, they usually correlate it with IBD and Crohn's, but she's never had a single stomach problem in her life and we are pretty aware of the environmental cause here... But that combined with mild fevers 5 days after finishing treatment has me slightly concerned.

roy
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Re: Wife recently "beat" c diff but doesn't feel like a victory

Postby roy » Fri Apr 06, 2018 6:30 pm

While she is on treatment a stool test is very likely to come back negative, the meds do kill the active infection quite quickly and it's the "active" (toxin) that the test looks for.
When meds are stopped any remain spores become active and our immune system either deals with them or we relapse.
During that recovery stage mild symptoms might return while our body fights off the infection.
If symptoms develop into watery D 3 or more times a day for 3 days in a row it indicates the natural immunity is not winning the battle and might need the help of meds.

matthew8
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Re: Wife recently "beat" c diff but doesn't feel like a victory

Postby matthew8 » Fri Apr 06, 2018 9:16 pm

roy wrote:
> While she is on treatment a stool test is very likely to come back
> negative, the meds do kill the active infection quite quickly and it's the
> "active" (toxin) that the test looks for.
> When meds are stopped any remain spores become active and our immune system
> either deals with them or we relapse.
> During that recovery stage mild symptoms might return while our body fights
> off the infection.
> If symptoms develop into watery D 3 or more times a day for 3 days in a row
> it indicates the natural immunity is not winning the battle and might need
> the help of meds.


Thank you for your reply. I've inquired to get another test done for her. Because the entire time she took antibiotics her symptoms were horrible we thought the treatment was refractory, but when it came back negative we were relieved. She actually had been off the medication for 12 hours prior to the test but that might not have been enough time.

Im going to suggest we push for fmt under the pretense that the original treatment was refractory. In Canada as I understand it you need to prove 2 reoccurences or a refractory (not working) treatment of antibiotics, in order to do fmt.

OCmama
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Re: Wife recently "beat" c diff but doesn't feel like a victory

Postby OCmama » Fri Apr 06, 2018 11:06 pm

It is best to wait 2 weeks after finishing antibiotics to test for C. diff, it is not surprising that she tested negative.

roy
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Re: Wife recently "beat" c diff but doesn't feel like a victory

Postby roy » Sat Apr 07, 2018 4:38 am

It's possible that c.diff is not the only cause of her illness.
So far there's no c.diff that is resistant to all meds, so if vanco does not controls the symptoms a Dr must assume it's possibly not the reason for the gut issues.
C.diff is a relapsing disease, the meds "cure" it and symptoms resolve but come back after the meds are stopped.
c.diff is also a normal gut flora if its not causing symptoms.
Her recent history of antibiotic use, her symptoms of D and a positive test all indicate c.diff (in other words a classic case) but not responding to meds should prompt a Dr to investigate further, not just throw more treatment at the original diagnosis.
As Ocmama pointed out, testing within 2 weeks of treatment can be inaccurate.
Meds clear the infection but dormant spores might still be present and germinate shortly after the test (false negative) or left over c.diff DNA (dead) can still remain in the gut and be detected by a PCR test (false positive)
No need to use the quote feature when replying. It uses up board space.

mandy988
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Re: Wife recently "beat" c diff but doesn't feel like a victory

Postby mandy988 » Tue Jul 10, 2018 8:55 pm

I hope your wife is feeling better by now. I just joined the site today and stumbled upon this post and felt compelled to share my story:

I am a 29 year old female and was diagnosed with CDiff 11 months ago at the age of 28. I started showing symptoms (diarrhea up to 20 times a day) a few days after my husband and I returned from a vacation in Mexico. He was also sick, but after a few weeks and a round of Cipro, he got better, but I got worse. After about 3 weeks a panel testing for "everything" came back negative (it did not test for CDiff, cryptosporidium, or cyclospora, since those were "rare"). It was 6 weeks of diarrhea on and off (I maintained my health by a BRAT-only diet), 20lbs of weight loss, and demanding more thorough tests from the doctor that finally resulted in a diagnosis of Cdiff, followed a week later by a diagnosis of Cyclospora. The theory was I contracted Cyclospora in Mexico, it destroyed my microbiome, and then I took Cipro on top of Zantac (which I already took for heartburn), and perhaps I'd already come in contact with Cdiff in Mexico or elsewhere but all of that combined allowed the Cdiff to grow. I was treated with Flagyl for 10 days but when I still had residual symptoms doctors followed with Alinia for the Cyclospora which happened to also treat Cdiff. I was symptom free for a few months likely because I stuck to a very mild simple diet, but have had IBS-type issues ever since then once I went back to a normal diet. Nothing like Cdiff, though. Unlike your wife I'd had issues like this prior (hence the Zantac) to Mexico, so I'm kinda back to "normal" now.

Long-story short, I suggest making sure your wife's doctors tested for EVERYTHING. She could have had a double infection and her other infection could be the root of her residual issues. Also FWIW probiotic-rich non-dairy foods / fermented foods and probiotic pills have been the key for me in recovery - kombucha is my go to fave :) Good luck!


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