1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

XIFAXAN

Discussion in 'XMRV Testing, Treatment and Transmission' started by Daffodil, Apr 10, 2012.

  1. Helene

    Helene

    Messages:
    78
    Likes:
    22
    Hi Folks: go on www. rxlist.com and read up about xifaximin. If you have loose stools they recommend stopping the drug and notifying the doctor. There were 6 pages of information on that website.

    I am also scheduled to take this and have purchased it. But now I am a bit worried about when to start.
    Best regards, Helene
     
  2. silicon

    silicon Senior Member

    Messages:
    148
    Likes:
    72
    apparently rifaximin is also available (very inexpensively) at alldaychemist.com
     
  3. Whit

    Whit Senior Member

    Messages:
    253
    Likes:
    232
    Bay Area
    I took Xifaxin, or actually I believe it was rifaximin or a generic, can't remember how I got a generic but I don't remember it being difficult. It didn't do anything good or bad. Just another round of useless antibiotics.

    I've heard of people getting better from it though, and bacterial overgrowth (SIBO) can cause very similar symptoms to CFS so if you have any gut issues along with the usual CFS symptoms, its' definitely worth looking into I think. I bet there are quite a few people who think they have CFS but just have an undiagnosed fatigue causing illness.
     
  4. Whit

    Whit Senior Member

    Messages:
    253
    Likes:
    232
    Bay Area
    I'm not sure what this has to do with mythical mouse viruses though....
     
  5. Daffodil

    Daffodil Senior Member

    Messages:
    2,930
    Likes:
    909
    global....could you please tell me about this pancreatic enzyme thing? i am not sure which one to order...


    thank you
     
  6. globalpilot

    globalpilot Senior Member

    Messages:
    594
    Likes:
    214
    Ontario
    Do you see the one that costs $466 ? It is that one.
    Let me know if you find it and if not I'll go to the site and look it up.

     
  7. Daffodil

    Daffodil Senior Member

    Messages:
    2,930
    Likes:
    909
    global.....yes ok i think i know which one. i guess i will order the complete profile too on the off chance they will find something, which they never do!


    thanks a lot
    xoxoxo
     
  8. globalpilot

    globalpilot Senior Member

    Messages:
    594
    Likes:
    214
    Ontario
    I know how you feel. :)
    Let's compare results if you like.
    One nice thing about directlabs is they send you the resutls electronically so you don't have to wait long.
     
  9. Daffodil

    Daffodil Senior Member

    Messages:
    2,930
    Likes:
    909
    thanks global:) feeling very disheartened today. am sending blood off tomorrow for nagalase testing..but its in the afternoon and i feel awful so i am not sure i can fast for the test. have you had this tested? i cannot remember if you are on gcmaf....

    xoxoxo
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,420
    Likes:
    4,820
    australia (brisbane)
    They say the longer you have cfs the more infections you potentially have, so killing possible infections in the gut or elsewhere can help free up the immune system to fight the mythical mouse virus or other infections one might have.

    cheers!!!
     
  11. globalpilot

    globalpilot Senior Member

    Messages:
    594
    Likes:
    214
    Ontario
    I have had nagalase tested. It was 1.9 the 2nd time, 2.1 the first. I"m not on GCMAF . It's on the radar but I'm trying some other things first.
     
  12. Daffodil

    Daffodil Senior Member

    Messages:
    2,930
    Likes:
    909
    thanks all. i have decided not to spent the $500 on the stool test right now. i am just so sick of spending all this money and getting nowhere. even if they find some bacteria, the abx and improvement would only be temporary. i'm also not doing the NK cell function test...i think the nurse at dr. enlander's office said i am supposed to do it every other month or something...but its another $400 for me. i think i will just try to fast and do the nagalase.

    i have a $4000 quest bill i dont know how i am going to pay!
     
  13. Daffodil

    Daffodil Senior Member

    Messages:
    2,930
    Likes:
    909
    hi all. i am doing very badly right now, due to xifaxan.

    i think it helped me a little the last time i took it for 10 days at a low dose. at first, it made me worse. then, 10 days after i stopped it, i had a pretty good week. i told my doctor, who decided i should take a higher dose and for a longer period of time.

    this was a huge mistake. i am insanely worse now, with chest pain, worse head swelling, body aching, just horrible. its been over 2 weeks since i stopped the xifaxan.

    wonder how long this bad period will last. all i can think about is death.
     
  14. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    1,508
    Likes:
    1,484
    Daffodil, are you any better?
     

See more popular forum discussions.

Share This Page