1. Patients launch a $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!
Science to Patients: Talking ME, Exercise and the Mitochondria - with Dr Charles Shepherd
The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014...
Discuss the article on the Forums.

My AZT + RAL Trial

Discussion in 'XMRV Testing, Treatment and Transmission' started by ladybugmandy, Mar 25, 2010.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,536
    Likes:
    3,473
    australia (brisbane)
    hi, my experience with inosine was that it did help. The first time i used it i felt almost recovered was also sleeping without meds, this only lasted a few weeks, another thing was that it did help alot with achey joints, from what i have read this maybe due to increasing uric acid levels which can act like an antioxidant/anti-inflammatory. The next few times i used inosine all i got was the decrease in joint pains. Im not sure if my initial response was a fluke or if it really did help, i did use the same brand and dosages as last time(alternating doses). My advice is to give it a try because its cheap as in $7 dollars for a bottle of 100x500mg tabs. I still havent used imunovir but would like to try it some time, maybe instead of antivirals
  2. Hysterical Woman

    Hysterical Woman Senior Member

    Messages:
    855
    Likes:
    2
    East Coast
    Inosine definitely helped me with energy - don't know if it was helping with immune system.

    Unfortunately I am pretty much off of everything like that until gut settles down.

    HW
  3. goldiland

    goldiland

    Messages:
    39
    Likes:
    2
    South Florida
    Last post on immunovir on Sue's thread...

    Cloud, I would encourage you to google Rivex Pharma, which is the North American distributor of Immunovir. On their website are research studies on the efficacy of immunovir.... if you have already been tested and have high viral titers to Epstein Barr or even HHV-6, I would print the research, take it to your physician and get a script. It is not cheap... it probably cost me $200-$250 a month but probably 85% of Klimas's patients are having positive clincial response. The cost benefit in my opinion is well worth it.
  4. jackie

    jackie Senior Member

    Messages:
    591
    Likes:
    4
    Goldiland (and everyone) this is a perfect time to ask! What would be considered "high viral titers" to EBV?....i've never had this adequately explained to me! (not in all the years of being ill) Anyone good at test interpretations? Ex:
    EBV Ab VCA, IgM 7
    EBV Early Antigen Ab, IgG 190
    EBV Ab VCA, IgG 546
    EBV Nuclear Antigen Ab, IgG 381
    CMV Ab, IgG (cytomegalovirus) 19.1
    HHV-6 IgG Antibodies 1:160 alert

    (i suppose it doesn't make much difference - i've already been on high-dose acyclovir for nearly 4 years. But i'm intrigued by the immunovir info and as i said...my results may not mean anything but id like to understand them) thank you...jackie (sorry sue for ot...with your extensive experience maybe you know my answers!)
  5. Cloud

    Cloud Guest

    Thank you for the great advice all you wonderful people....and, I apologize for hi-jacking the thread.
  6. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    14
    hey Sue
    Did you tell your dr about the neg result?
    Also; please dont expect results over night, that is not realistic. I think it will take months before you feel better. Dont want you to come next week with yet another med for your arsenal ;) Patience is hard I know, but we have had this stupid disease for so long, so we know waiting.
    Also: HOW ARE YOU DOING?
  7. Navid

    Navid Senior Member

    Messages:
    409
    Likes:
    58
    Go Sue Go

    well done sue...why wld u be embarrassed?

    did u have to pay for it or is it covered...you're in canada...if your doc writes a prescription is it covered regardless. here in US some drugs aren't covered and RAL is only covered for HIV+

    anyway can't wait to hear what happens.

    i was on an HIV POS...board yesterday. some long time HIV+ ppl who have been on all different protocols for 20+ years say this drug is great for them...no nasty side effects like most of the others they have taken....azt of course having been one of the worst in the 25 year history of treating HIV.

    Best of Luck my dear Sue.

    All body parts are crossed for good news soon.

    you must be one persuasive chick...can't wait to hear and see the stuff you get done when you are well:D:victory::D

    warmly, lisa
  8. alice1

    alice1 Senior Member

    Messages:
    457
    Likes:
    0
    Toronto
    you really are amazing !!!!!!!!!!!!!
    my fingers are crossed.
    xoxox
  9. cfs since 1998

    cfs since 1998 *****

    Messages:
    577
    Likes:
    4
    What dose of raltegravir are you taking? Congratulations and good luck.
  10. Kati

    Kati Patient in training

    Messages:
    1,718
    Likes:
    673
    LOL @ Pad Thai and Poutine!!! Pepto-Bismol???

    I am glad you got access to the Issentress, Sue and that your insurance are covering it. ( I can get Air Miles when I fill up my prescription at Safeway, before the insurance discount).

    Keep us updated!!!
  11. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    14
    Hey Sue,
    lol, yes a big plate of thai food and poutine may have something to do with that nausea ... :)
    How much rategravir and azt do you have at the moment? What if the dr asks you for the test result next month? I'm just worried that you are suddenly cut of from treatment. If you have the xmrv or any other retro virus that would not be a good thing, resistance wise. So better have a plan for the worst case scenario :)
    ok well keep us all posted, and take care!

    xoxo
  12. Cloud

    Cloud Guest

    OK, now I feel much more confident about your treatment Sue. My biggest concern with trying AZT alone was the potential for developing resistance....unlikely, but possible. MY cheers are getting louder!! Trail Blazing Sue.....I hope the best for you. And yes, thank you for sharing freely with us all.

    I have had my eye on Raltegravir for it's low toxicity potential.
  13. omerbasket

    omerbasket Senior Member

    Messages:
    510
    Likes:
    13
    Sue,
    First of all - again, it would be for the best of all of us if you would get better on that drug - Because we care about you, and also because we look anxiously for a treatment for ourselves.

    I hope you would improve during that month - but as people said here, it's very much possible that it would take some more several months for that improvement. I hope your doctor would agree to continue your prescription even when you tell him about your negative serology tes results. I would live one question to the specialists here, and that question is whether or not taking AZT for to months and raltegravir for one of those months, and than stopping, might cause resistance to the drug (definitley hope that it's not possible - and even if it is possible, I guess there are more people that wouldn't develop resistance than people that would). Does it matter, for that issue, that XMRV is a simple retrovirus that seems to not be mutating a lot?

    One more suggestion for you, Sue, similar to what I've said a couple of days ago (before you got your new prescription): You might want to look all over the internet for a doctor who is willing to prescribe antiretrovirals to ME/CFS patients (may be even better if it's a doctor who did so even before the XMRV connection was discovered - because than your serology test should not matter) - And get an appointment to that doctor - perhaps an appointment that you would be able to cancel if your current doctor would continue your prescriptions - and if your current doctor would not agree to give you new prescriptions for antiretrovirals - than maybe that other doctor would agree and you would be able to continue to take your antiretrovirals without stopping (which, I guess, might be critical).
  14. Rrrr

    Rrrr Senior Member

    Messages:
    1,346
    Likes:
    159
    ladybug,

    thank you so much for keeping us updated. WE ARE ROUTING FOR YOU WITH THIS NEW DEVELOPMENT!!!!!

    xxoo
    rrrr
  15. hensue

    hensue Senior Member

    Messages:
    269
    Likes:
    0
    Sue,
    OMG cannot believe you got the other drug! I think when you get well which is soon I hope. You should be in sales lol anykind. If you can talk the doc into giving you azt and Raltegravir. You are awesome and like everyone said I do hope you get well fast.
    Are you feeling any better since you started all this except for the full tummy?
    Do take care and all prayers are with you.
    Thanks so much for the step by step info.
  16. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,129
    Likes:
    1,371
    London
    wow Sue! Great stuff in getting the prescription.

    3 months is usually how long I give a new drug.

    I'm in the UK and going to the Invest in ME conference at the end of May. I hope that by then we might get some hints or clues on how to beat this virus.

    Please let us know how you get and and thank you for being so brave.
  17. Simba

    Simba

    Messages:
    1
    Likes:
    0
    Hi Sue

    Just wanted to wish you all the best and I sooooo hope that you are finally on the right road. You so deserve to get well....your determination is inspirational. I admire you very much.

    Here's to many happy days ahead for you.

    Take care

    Love Simba
  18. jimbob

    jimbob ME/CFS84-XMRV+

    Messages:
    321
    Likes:
    8
    myrtle beach, s.c.
    good luck sue, hope the addition of Raltegravir does the trick. that's what I was going to start soon, but it would cost me $800 a month! maybe when I hit the lottery!
  19. serenity

    serenity Senior Member

    Messages:
    571
    Likes:
    3
    Austin
    i just checken in Sue, i am sorry - i did not know you had tested negative.
    best of luck on the new drug.
  20. alice1

    alice1 Senior Member

    Messages:
    457
    Likes:
    0
    Toronto
    only 2 days and you're feeling something...could be a very good sign.
    xo

See more popular forum discussions.

Share This Page