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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Starting Raltegravir

Discussion in 'XMRV Testing, Treatment and Transmission' started by jimbob, May 27, 2010.

  1. redo

    redo Senior Member

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    I know it's only been days. But still: have you noticed anything? (both on the up and downside).

    I guess normal side effects wouldn't be the major problem, but at the same time, temporary worsening of the symptoms could be a indication that the drug is doing something in body...
  2. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    Have noticed increase in stamina and decrease in brain fog. Not a major amount, but it's definately doing something!
  3. leaves

    leaves Senior Member

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    Thats great news! Keep us posted :)

    oh and sorry if you told us this; but do you mind sharing whether you got tested for XMRV?
  4. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    Not tested yet, but i'm classic case with acute onset 3/29/84 and diagnosis 1986. About 99.9% sure I have it. I will do the serology test when it comes out however.
  5. leaves

    leaves Senior Member

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    Thanks! Great you post here, very excited to hear all your experienes and keeping my fingers and toes crossed for you.
  6. Rrrr

    Rrrr Senior Member

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    yes, we are here to support you and to learn from your experience!

    rrrr
  7. grant107

    grant107 Jean

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    Ormond Beach, Fl
    jimbob,
    thank you for letting us know about your experience with Raltegravir. I am getting close to trying it if I can find an infectious disease doctor who will prescribe it. I have had this disease since 1987 so it is time I got a break. Was it hard to find a doctor to treat this virus.
    Hang in there. We are all pulling for you.
    Jean
  8. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    My doc is a rheumatologist, who mainly treats women with fibromyalgia. But she was the best I could do when I moved to myrtle beach over 14 yrs ago. I've educated her somewhat and she pretty much lets me try whatever I want. couldn't find infectious desease doc in the area. Forms to fill out for assistance for Ral were short and quick and enabled me to even try it.
  9. BEG

    BEG Senior Member

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    That's great jimbob. I appreciate you sharing your experience.
  10. One problem, the drug was not tested on people with ME CFS, who are pathologically drug & chemical sensitive.
  11. Cloud

    Cloud Guest

    I have never heard the word "pathologically" used regarding our med intolerance....But it's right on! "Sensitivity" is not the right word and, I have been telling doctors that for years. It's definately a pathological problem, and I think this is true for many of us. Honestly, this is an issue that's been on my mind since the discovery that some of these drugs are effective on xmrv. If I can't handle the smallest dose of most drugs, how in the world would I ever tolerate big gun anti retrovirals, especially in combo. I think this is a very important issue that's being overlooked in this push for the right drug.
    So....I work away on methylation anxiously hoping to improve my med tolerance ability. Maybe they will come up with an anti-retroviral that's entirely dealt with through the kidneys (like Vistide) which would bypass a lot of this problem of intolerance. Sometimes I luck out and get a med that's handled through a different cytochrome enzyme and I do just fine with it. Maybe I can handle Raltegrevir since it does have a low toxicity profile? Probably gonna find out real soon.
  12. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    I know what your saying cloud, I've been that way over the years also, low dose everything! When I started Ral, I had to take it as prescribed and that scared the sh-t out of me! However, so far (been a week) I'm handling very well! Still no significant change since my last update.
  13. Cloud

    Cloud Guest

    I just came back in this thread to ask you that very question. I'm really glad to hear your handling it well Jimbob.....hope that continues. Thanks for keeping us in the loop too.
  14. grant107

    grant107 Jean

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    Ormond Beach, Fl
    cutting the ral

    Is the raltegravir time release? Maybe that is why you had to take the full dose.
    Jean
  15. Gemini

    Gemini Senior Member

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    Cloud,

    Right on. Research shows chronic immune activation & cytokine exposure dysregulates the cytochrome enzyme system which might be one cause of ME/CFS drug intolerance. Aniother might be genetic predisposition and DNA testing is available to check that out before you decide to take a drug.

    Gemini
  16. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    grant107 I just checked with one of the senior members about the dose before I started, so that's why i'm doing 400mg twice a day. Who really knows for sure, this being an HIV drug. I don't seem to be experiencing any side effects, so I guess this is o.k. My Rheumy signed off on the dose also, not that she's an expert or anything. I've had to educate her some!
  17. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    Sorry, I haven't updated in a while, 22nd day on Ral. Able to do more during the day stamina wise. brain power (conversations/searching for the right word) is much better! Also, my mood has improved without the help of antidepressants. Jim
  18. Rrrr

    Rrrr Senior Member

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    jimbob, this is GREAT! keep us posted.

    warmly,
    rrrr
  19. grant107

    grant107 Jean

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    Ormond Beach, Fl
    jimbob, I am so happy for you. I have been anxiously waiting to hear how it is going. I am trying to make myself wait until September after the NIH workshop on xmrv. However, I am convinced Ral is going to help.
  20. glenp

    glenp "and this too shall pass"

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    Vancouver Canada suburbs
    Jimbo gl. I am happy that you have a doctor willing to go along. I sure do hope that you continue to improve.

    glen

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