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Have ME/CFS and just diagnosed with C-Diff....

Discussion in 'Gastrointestinal and Urinary' started by BellaSC, Dec 26, 2014.

  1. BellaSC

    BellaSC

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    On top of my CFS, I've been sick since the end of October....great way to spend the holidays and my birthday I say with complete sarcasm.... No support from my grown daughters who either don't get it or don't want to...very sad and depressing for me.
    So after being sick for the first month, I was given antibiotics (Clindamycin) after running a fever of 102
    and feeling absolutely horrible with what appeared to be a sinus infection and nasty throat (doctor said my throat looked impressive). Several days after I ended the Clindamycin, I began waking up with serious stomach pain - ulcer level pain. I finally went to the doctor and received a diagnosis of C-Diff. Holy Cow !
    Serious and very bad bacterial infection in my digestive system.....
    More antibitotics...this time, the big guns- Metrodinazole (Flagyl). If this doesn't get rid of it, next is Vancomycin...there's not much beyond Vanco.
    I have atypical symptoms of C-Diff- no diarrhea (which is usually the primary symptom). C-Diff is usually all in the intestines causing severe diarrhea and cramps, etc. For me, it's all in my stomach...
    with headaches, no appetite, nausea, mucous in stool, constipated, general very sick feeling in stomach and add several notches to my fatigue level...

    Has anyone else had to deal with c-diff on top of me/cfs?
    I feel so vulnerable already with cfs and a compromised immune system.
    This just puts my overall health at greater risk.

    I also just ordered a special probiotic (SACCHAROMYCES BOULARDII) which is supposed to help with C-diff...

    I'd love to hear if anyone else with me/cfs has had to deal with c-diff...as I'm feeling incredibly alone..
    Thank you!
     
    Gingergrrl and rosie26 like this.
  2. taniaaust1

    taniaaust1

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    Welcome here.
     
  3. halcyon

    halcyon Senior Member

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    Sorry to hear you're dealing with that, C. difficile can be a real bugger. I'm surprised more of us don't have a problem with it given how often we're pumped full of antibiotics. If it makes you feel any better, you're lucky to not have the diarrhea at least, I've heard that part of it can be really horrible. Not that all the pain you're experiencing isn't.

    It sounds like you're on the right track with the Flagyl and S. boulardii. That should hopefully knock it out. You'll probably want to stay on the S. boulardii for a while after you finish the Flagyl, just in case. I wish you luck!
     
  4. acer2000

    acer2000 Senior Member

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    Sorry to hear this. If you get a FMT let us know if your CFS is cured also. :)
     
  5. Ema

    Ema Senior Member

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    I agree that it's odd that more of us don't have c diff...and also that the s boulardii is a great plan along with a high quality probiotic like VSL3.

    Some doctors also recommend pulsing Flagyl for a while after the initial course to make sure everything is killed.

    The people I have known with c diff have all recovered fully, even with other serious health concerns. I wish the same for you!
     
  6. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    There is actually something beyond Vancomycin. One is not really beyond but there is a new, longer, "pulsed", protocol for recurrent infections that your doctor can read on UpToDate.

    I read about a third antibiotic but forgot the name of it.

    And there is fecal transplant, which sounds icky but has actually a better success rate than antibiotics and the recovery is supposed to be shorter.
     
    Last edited: Dec 27, 2014
  7. Gingergrrl

    Gingergrrl Senior Member

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    @BellaSC I am so sorry to hear all that you are dealing with but wanted to let you know that S. Boulardii is a great probiotic and it significantly helped my GI issues (along with a few other products.) I still take it every single day. Best wishes to you and welcome to PR.
     
  8. BellaSC

    BellaSC

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    Thanks Halcyon....It feels like a real bugger..the nausea is really horrible. I'm struggling to find things I can eat that sit okay in my stomach. and yes, good news that I don't have the diarrhea. I'm always trying to find something to be grateful for. :)
     
  9. BellaSC

    BellaSC

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    Thanks Gingergrrl!
     
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  10. BellaSC

    BellaSC

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    Thanks Ema. God to know that others have been fully cured of this. I found a website "c-diff foundation" and of course there were lots of stories of it taking months to get rid of this. Thanks for your encouragement!
     
  11. BellaSC

    BellaSC

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    Hi acer- what's FMT?
     
  12. BellaSC

    BellaSC

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    Thanks for the encouragement WillowJ! I appreciate it....Having CFS is difficult enough and then being sick for 2 months with one thing after another is really trying. Good to know there are options beyond Vanco too.
     
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  13. Art Vandelay

    Art Vandelay Senior Member

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    Last edited: Dec 30, 2014
    WillowJ likes this.
  14. Gondwanaland

    Gondwanaland Senior Member

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  15. Art Vandelay

    Art Vandelay Senior Member

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    @Gondwanaland thank you! :) Seinfeld has consistently made me laugh, even over the course of this illness, so I have to pay homage to it somehow.
     
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  16. Gondwanaland

    Gondwanaland Senior Member

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    Don't you get positive results from S. boulardii?
     
  17. Wayne

    Wayne Senior Member

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    I would consider high doses of liposomal Vit. C (which is anti-bacterial). -- Good luck finding a good solution for yourself!
     
  18. BellaSC

    BellaSC

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  19. Katherine

    Katherine

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    How exactly did they diagnose you with C. diff?
     
  20. BellaSC

    BellaSC

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    They did a stool test...it's VERY unusual though to NOT have diarrhea with c-diff so it's kind of a fluke
    that the doctor had an instinct to test me for it. Plus Clindamycin is notorious for causing C-Diff.
     
    WillowJ likes this.

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