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Starting Raltegravir

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

  1. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    Received my first shipment of Ral today, enough for 3 months with 3 refills to follow. Starting at midnight with first pill. If it does anything, i'll post. Im not able to get on computer as much as i'd like, but i'll make sure to update as much as possible. Here's hoping!
     
  2. vdt33

    vdt33

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    Hi jimbob,

    I want to try Raltegravir. Where did you get it? You must have a very cooperative doctor.

    Thanks for any information.

    vdt
     
  3. Noro

    Noro

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    Hope it goes well Jimbob, you re brave to give it a go!!
     
  4. ukxmrv

    ukxmrv Senior Member

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    Good luck Jimbob!

    Will be hoping it goes well for you.
     
  5. omerbasket

    omerbasket Senior Member

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    Good luck jimbob. I'm not a doctor nor a scientist, but I do want to say to you, that I think you shouldn't expect a quick improvement (it would probably take few months or more), and even if you do have some improvement and it stops it might continue after a few months or more on which you are on the drug.
    Also, and although you must be aware of any side effects that you might experience - I do guess that you'll experience some and it might not be easy, it might even be difficult. Again, be aware of the side effects and decide wisely what to do with them, but don't be surprised that there are side effects.
     
  6. MaryAnn

    MaryAnn

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    Jimbob

    Good Luck! The individuals that have tried drugs and posted, seemed to start with AZT and then add Raltegravir. Will you be adding another drug? I hope it goes well for you.
     
  7. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    no, I'm doing just the Ral. went to www.needymeds.com and went to issentris and printed application. My dr. and I filled out the forms which are very short and mailed them back about 2 wks ago. there is no charge for these drugs!
     
  8. Knackered

    Knackered Guest

    I really hope everything goes well jimbob, keep us updated.
     
  9. bluebonnet

    bluebonnet

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    Good luck jimbob.... keeping fingers crossed for you!
     
  10. subtr4ct

    subtr4ct Senior Member

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  11. Cort

    Cort Phoenix Rising Founder

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    Good for you to be so pro-active. Good luck with the drug! Was your Dr. against AZT for did he/she just think Raltegavir was the way to go?
     
  12. garcia

    garcia Aristocrat Extraordinaire

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    Oh to live in the US!

    Good luck Jimbob. Will watch your progress closely.

    When I spoke to Dr Judy at InvestinME in London on Monday, she was against the use of monotherapy (due to possibility of resistance).
     
  13. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    I just couldn't get myself on board with AZT and all the side effects. Ral a whole lot less scary and we'll see where it goes from here. Thanks for all the encouraging words.
     
  14. BEG

    BEG Senior Member

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    Good luck, Jimbob. What do you mean by "issentris"? Looked on the website for it. Thanks.
     
  15. jimbob

    jimbob ME/CFS84-XMRV+

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    sorry b.e.g., I spelled it wrong, it's Isentress, that's the brand name for Raltegravir.
     
  16. mojoey

    mojoey Senior Member

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    Jimob,

    not sure if you read dr jones' blog at treatingxmrv.blogspot.com, but she said raltegravir was the one out of the three that caused the most adverse (but also potentially positive, as she is now reporting) reaction, although she thinks this is possibly due to all the unintegrated viral DNA. For some reason it caused the highest inflammatory response. She thinks it's because it's such a potent inhibitor of XMRV integrase, but who really knows at this point. She did say those that tried raltegravir alone have had the worst response.

    I know energetic testing does that resonate with many people, but personally I would not take a drug unless I tested well for it. Out of the threes I tested well for azt and tenofovir, in that order, whereas raltegravir collapsed me. This muscle testng was done before I ever heard from dr jones about her experience with the drugs. Eventually I decided to put off the azt for now and seek another option that I can't post about publically yet (but it has been mentioned as a potential therapy at some XMRV conferences). I just hope you use all the accumulated knowledge at your disposal before doing this. What are common side effects for AIDS patients may not occur for CFS patients and vice versa. Talk with dr jones if you haven't already. If you're willing to take a leap of faith, get some type of autonomic response testing (ART testing, muscle testing, biomeridian testing, other electrodermal testing) to see what type of overall effect the drug has on your body.
     
  17. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    thanks for the tips m0joey
     
  18. ladybugmandy

    ladybugmandy *****

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    autonomic response testing?? joey..i tried to google this but imy fog is really bad. how can they determine which drugs will be better for you? do they give you the drug and then test certain things?

    thank you
    sue
     
  19. redo

    redo Senior Member

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    Here's a quote from drugs.com about raltegravir:

    Seems like a good drug with regards to side effects.
     
  20. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    redo, I new that going in. one list on side effects showed every drug except Ral with side effects. Still scary though, I've never taken large doses of anything!
     

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