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Starting Raltegravir

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

  1. Cloud

    Cloud Guest

    I've been doing Methylation Tx based on RichVK's simplified protocol for about 3 months now. A partially blocked methylation cycle may affect P450 function. I have had definite improvement in symptoms, but can't yet detect any improved med tolerance.
    I remember my very earliest days (16 years ago) of researching trying to find out why I was sick....I kept coming back to a P450 malfunction.
  2. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    Having blood work tomorrow, hoping no adverse findings from the Ral. It's been 5 weeks and I don't really want to stop it until a better treatment is found. ggingues originally from western mass., moved to myrtle beach for my health in 95.
  3. JAH

    JAH Senior Member

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    San Jose
    Major tangent alert-- I am a new england transplant in the bay are and die hard red sox fan. went to my first game in 5 years on fri, when the sox played the giants. a lot of fun, even though the sox lost. felt horrible the next couple of days- but it was worth it!

    JAH

    go sox!
  4. Rrrr

    Rrrr Senior Member

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    good luck with the blood work tomorrow. what will you be tested for?

    and how are you feeling lately?

    remind us: are you on only the raltegravir? not the other antiretrovirals?

    warmly,
    rrrr
  5. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    Not sure what she will check and I'm feeling the same, more stamina and less brain fog. I'm on Raltegravir 400mg twice a day. Go big Poppy!!!
  6. JAH

    JAH Senior Member

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    San Jose
    I just read your post, and a minute later, Big Papi hit a 3 run homer! Go sox!

    JAH
  7. Navid

    Navid Senior Member

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    jimbob: good luck on blood tests....glad you are feeling better on RAL. i grew up in spfld...left for berkeley for college and never went back...where are u from in w.mass : ):D:D
  8. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    I was from Westfield, right next to Springfield! We might have crossed paths once?! I haven't been back since96.
  9. Peggy

    Peggy

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    Hi All,
    I am just getting on to this thread.

    Does anyone know about Ral and mitochondrial damage? I am really concerned in general about the effects of these drugs on the mitos since I have two abnormal mito tests.

    Also, I know an ME/CFS doc in the Boston area used to use a product called UltraClear that was supposed to help with P450 function, and several patients I knew then reported improvement on it.

    JimBob did you get sick in W. Mass? What year??

    Peggy
  10. Rrrr

    Rrrr Senior Member

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    peggy, i have been on ultraclear plus for 15 yrs (1 scoop, not the recommended 2 scoops, per day). when i go off it, i feel worse. also, i got sick in MA and it happened in 1983: bedridden for 1 full yr. then a 7 yr remission. then sick again in Wash DC. -- rrrr

  11. Forebearance

    Forebearance Senior Member

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    Great Plains, US
    Good luck with your blood tests, Jimbob, and thanks for sharing your experiences with us!
    I'm so glad the Ral is helping you.
    Forebearance
  12. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    Peggy, I had acute onset 3/29/84 in Westfield, Mass., diagnosed in late 85 by dr. Nelson Gantz and appeared with him on Nightline in 86. Social Security Disability since spring of 87 and still on it.
  13. Rrrr

    Rrrr Senior Member

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    jim,

    how are you feeling lately?

    rrrr
  14. jimbob

    jimbob ME/CFS84-XMRV+

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    still better than normal with the Ral Rrrr. Don't think it's going to be our cure, but it's better than nothing right now!
  15. Rrrr

    Rrrr Senior Member

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    why do you say it is not our cure? won't it take a while to see if it really works (months or a year or so?)?
  16. gu3vara

    gu3vara Senior Member

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    Hey Jimbob, just curious about your progress on the disability scale before and after RAL.

    Were you like 20% of your old self at first and like 40% now (as an example)

    I also think it could take several months to know if it's a full cure or not
  17. floydguy

    floydguy Senior Member

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    New England

    Is it me or is New England overly represented? I am from the Boston area and went to U Mass Amherst as an undergrad...My original sickness may have occurred in 1985 (suspicious year isn't it?). Had the whole mono type of thing with really high levels of EBV, Hepatitis (?), etc. Appears to have gone into remission till early 2000s.
  18. grant107

    grant107 Jean

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    Ormond Beach, Fl
    Jimbob, are you considering adding any other antiretrovirals?
  19. Rrrr

    Rrrr Senior Member

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    floydguy,

    this sounds like me!! almost exactly. but my remission ended in 1990. i got sick with mono in 1982/83, sick one yr, then remission for 7, then came back with pneumonia. i went to umass, too.

    are you still in the boston area? if so, we hope to protest next week. can you PM me?

    rrrr
  20. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    well I'm probably a little impatient after 26 yrs. I just assume that this one particular drug may not be the perfect cure is all. Disability scale was pretty close to your example, probably 30 before and now 50. Only got approved for free Ral, thought if I got too greedy, might be denied. I'll stick with it for a while, been about 6 wks now. Floydguy, did you know of Gantz and Komarroff at the time? I went to UMASS also, but it was the medical center unfortunately! I'll check back as soon as I can.

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