Introduction & Lucky Recipient Of Recurrent C Diff!!

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jeffsmom
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Introduction & Lucky Recipient Of Recurrent C Diff!!

Postby jeffsmom » Sat Apr 01, 2017 2:37 pm

Hello All!! My name is Jodi and I'm a 50 year old female living in TX. Back in 2012 I had a neurostimulator implant for chronic back pain. Upon leaving the hospital the Doctor gave me a prescription for the antibiotic Omniceff. Sometime later I ended up with horrible diarrhea and vomiting. These symptoms continued for well over a month without going to the Doctor (I have no idea why I didn't go). By the time I did go, I had to be hospitalized and put on IV Flagyl. I was in the hospital for 4 days in Isolation. That was absolute Hell for me. I felt like a leper.

Fast forward to about a month ago when I finally had the courage to tell my Primary Care Provider that I was tired of the horrible diarrhea (I had it since 2012 but other Doctors ignored it). She immediately ordered stool testing and blood work. In the meantime, she put me on Augmentin. Yep...You guessed it....I have C Diff again! But, here's the kicker....my PCP got the results and called to tell me that I had C Diff. So, she took me off of the Augmentin and put me on the Flagyl. 2 days later I was scheduled to see the Infectious Disease Doctor. She said that I did NOT have C Diff as the PCR was negative. Yet, she admitted that she didn't know why the Flagyl was helping diminish the diarrhea. But, I was told to stop taking it.

And now we shall fast forward to the most recent saga....I was also scheduled to see a Gastroenterologist and they scheduled me for a colonoscopy for 6 weeks from now. In the meantime, she wants to do stool testing. I HAVE C DIFF AGAIN!!! I'm back on the Flagyl.

I know I'm not alone when I say that I am just plain sick and tired of this C Diff. This time around I am dealing with fatigue, chills and overall blah-ness. I suppose I should be thankful that I'm not throwing up though. Anyway, I'm trying to avoid the fecal transplant simply because I would have to travel 4 hours to have that done. I just recently stumbled on some info online about Fusidic Acid as a treatment. I'm going to talk to my PCP about it. Sorry for the novel.

Musings
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Re: Introduction & Lucky Recipient Of Recurrent C Diff!!

Postby Musings » Mon Apr 03, 2017 9:27 am

Believe flagyl treats other parasites as well so that is why it might have helped with the diarrhea if you did not have c. diff though it sounds like your doctors can't seem to agree on that conclusion. Have they done a full stool panel to rule out any other possible issues aside from, or in addition to, c.diff?

Also, have they had you stop before the full dose of flagyl and then put you back on? If so, would talk to them about going onto vanco or dficid as they have higher cure rates for c.diff and some strains are resistant to flagyl.

Hope you start feeling better soon.

~Lauren

beth22
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Re: Introduction & Lucky Recipient Of Recurrent C Diff!!

Postby beth22 » Mon Apr 03, 2017 9:55 pm

Hi jeffsmom - I did not see your post before, but welcome to the site. Please read the first forum for more information.

If you have c difficile again, I would ask your doctors if you can take Dificid, which is formulated to specifically target that bacteria and disrupts other flora the least. Flagyl is a harsh drug to take and many get side effects from it. I have had FMT and that is what helped me the most. I had to travel out of state the first time and fly out of town the second. But, I would try the meds first and see if they help you.

georgina
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Re: Introduction & Lucky Recipient Of Recurrent C Diff!!

Postby georgina » Tue Apr 04, 2017 2:59 am

Jeffsmom
Sorry you are dealing with Cdiff again. Your doctor should have considered other treatment for you , not Flagyl especially since you have stated that you have been vomiting alot. Flagyl gives terrible nausea and vomiting. Like Beth said , the best option in Cdiff treatment is the Dificid , it is engineered to target only the clostridia species and is superior to Flagyl and Vanco because it stops the sporing process although 10 days sometimes is not enough to cure the infection . Longer courses of Dificid were successful when everything else was failing , so if you do not want to go trough FMT , that might be the best treatment plan.

amyc
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Re: Introduction & Lucky Recipient Of Recurrent C Diff!!

Postby amyc » Wed Apr 05, 2017 7:31 pm

I'm sorry your medical care has been so poor, and multiple doctors have ignored constant diarrhea, or just blown you off like that. I am stunned an ID told you to stop an antibiotic part way through the course, especially since it was improving your symptoms. It's very strange that your primary care doctor said your test was positive and then the ID said it was negative. I wouldn't trust that ID, and I wish there was a place online where people could post information like that to warn other people without fearing lawsuits.

Anyway, if the flagyl helps you, that's awesome. I would ask your GI if you should take it for longer than the standard time since it appears you have gone untreated for so long. Some people have horrible side effects with flagyl but some don't, so if it works for you that's great! If you have trouble with side effects, you can call the GI to ask for vancomycin or Dificid.

I didn't have much trouble with flagyl side effects, and it knocked my symptoms down very quickly, but I relapsed afterwards. I immediately started vancomycin when I relapsed, and a single course of vanco cured me. That was 2010. In 2012 I had a colonoscopy and relapsed afterwards, but a single course of vanco cured me again, and I have been C diff free since then.

Roxanne
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Re: Introduction & Lucky Recipient Of Recurrent C Diff!!

Postby Roxanne » Tue Apr 25, 2017 12:09 pm

You can get a false negative, I have and was told I was bowel incontinent. Turned out I wasn't, did have C-Diff the whole time.

Vanco can cause hearing loss, I have lost about half my hearing from it. Taking Dificid and going for my 2nd FMT this week. I did feel great for a few weeks after the first FMT. Don't give up, you found the right board and stay proactive.

Many doctors are doing the FMT, but not registered with the stool bank. Easy for them to join, if you don't have a donor.

Read Google reviews on doctors. Talk to them about a taper down dose.

txjoanna
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Re: Introduction & Lucky Recipient Of Recurrent C Diff!!

Postby txjoanna » Sat May 27, 2017 8:39 am

I was told I had post IBS ummmmmm nope relapse

DrMike
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Re: Introduction & Lucky Recipient Of Recurrent C Diff!!

Postby DrMike » Mon Jul 17, 2017 1:56 pm

The trouble with C. diff testing is:
1) False positives and false negatives (with the latter being a bigger problem than the former for most people here)
2) A lack of a >99% gold standard test

Ultimately, it's a clinical diagnosis and the testing only confirms a suspicion.


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