my AZT trial

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Mar 25, 2010.

  1. ladybugmandy

    ladybugmandy Member

    hi all. after much begging, my doctor has agreed to let me try AZT 300 mg for one month. i will report about my experience on phoenix rising under this same name.

  2. victoria

    victoria New Member

    would you come back and post here as well what your experience is? I'm betting many here would like to know; many find it difficult to learn 2 boards. I personally find PR kind of hard.

    good luck!

    all the best,

  3. aftermath

    aftermath New Member

    Please be careful.
  4. ladybugmandy

    ladybugmandy Member

    thanks. sure i will post here when i notice something. i have been on it 2 1/2 days now and i think you are supposed to notice improvement in 2 weeks, if it works.

    i have a prominent infectious disease doctor monitoring me. only problem is, he will not give it to me more than a month (unless i improve i guess)

  5. victoria

    victoria New Member

    Thanks, I hope it gives you improvements. I know some here have talked about trying it but not sure if they have or what happened... so your results will be interesting.

    all the best,

  6. FibroFay

    FibroFay New Member

    I've read your post and know that you are really suffering. I just wanted to say I pray the AZT works for you. I'll keep an eye out for your posts on how you are doing.

  7. AuntTammie

    AuntTammie New Member

    You have continued to be in my thoughts & prayers. I really hope that this helps you.
  8. karynwolfe

    karynwolfe New Member

    Oh my goodness! Go mandy, go! You deserve this chance so much, I hope it does SOMETHING so you know where to invest your energy ((((((hugs!)))))

  9. ladybugmandy

    ladybugmandy Member

    thank you guys so're awesome.

    nothing is happening yet..:-/

  10. SpecialK82

    SpecialK82 New Member

    Hi Sue :)

    It's nice to see you. Good luck with the AZT, I know that you have thought about this a long time and I hope it shows a significant improvement for you. You are a pioneer for us - I know you feel out of options, I understand that.

    I will be so interested in your results -and hopefully your doc will let you continue if you see improvement.

    Fingers crossed - I will say a prayer for your safety and healing.

  11. loto

    loto Member

    I have a terrible memory, and wonder what you're taking the AZT for?
  12. ladybugmandy

    ladybugmandy Member

    specialk..thank you :)

    it is much too soon to post this..its only been 10 days...but if i had to guess, i would say the AZT is helping. slightly more energy and a touch less brainfog. but its still all transient.

    loto..i am taking azt as an experiment, in case i have xmrv (i was negative via PCR and culture but serology is pending) and in case thats whats been causing my CFS.

    i wouldnt have taken the drug had i not been very desperate.

  13. loto

    loto Member

    I wish you the best, and pray that azt helps you.

    I have been trying different meds to help with my FM - some don't work, some do.

    While I'm not as ill as you, I know what you mean about being desperate to find stuff that helps.
  14. ladybugmandy

    ladybugmandy Member

    hi all. just a quick update.

    the AZT helped a little but when i added Raltegravir, i think i really started to feel better quickly. unfortunately, i also developed sinus tachycardia and now am off the drug.

    i see doctor today and will decide what to do. not many options...only raltegravir works very well against XMRV....AZT and Tenofovir do have some effect too, but not nearly as good.

    Sure do not want to go back to that CFS hell!

    For more detailed posts about my trial, please see Phoenix Rising

  15. hollie9

    hollie9 New Member

    Does this mean you felt much better on your treatments?

  16. ladybugmandy

    ladybugmandy Member

    yes, especially raltegravir i think
  17. strawberriblond

    strawberriblond New Member

    Hi to all,, Just wanted to put in my 2 cents worth...I have CFS & Fibro & asthma
    I work in a health food store so have some VERY good suggestions.
    If you want to KILL a virus take Olive LEAF (barleans makes a great liquid from)
    it KILLS amost ALL viruses,,,even POLIO !!!
    Also for pain fish oil 3000 mill a day..GOOD fish oil not target or walmart.
    Nordic naturals is rated the best.
    I also take barley greens for energy and msm for pain.And of course calcium and lots of magnesium. Take extra D,,helps the immune system 1000-5000 a day
    I try to stay away from BIG Pharma,,,but still need stuff to sleep...Everything they give you causes OTHER problems, which we don,t need as CFS is ENOUGH !!!
    God Bless,,,try Olive leaf FIRST !!!
    Sissy in minnesota
  18. aftermath

    aftermath New Member


    Well said. Big pharma is out best hope in the world right now.

    I welcome them with open arms.

    We have had people trying to solve this issue with nutritional supplements for 25 years now. They have gotten NOWHERE.

    If a retrovirus is really turns out to be the cause of this illness, nutritional supplements will be no more helpful than they are for AIDS.

    People attack the pharmaceutical companies ad nauseam. I certainly can't say that I agree with all of their practices.

    Still, the reason people with HIV are now living quite long lives is not vitamins--it's the big drug companies.

    I, for one, have had enough of nutritional supplements. I want to see the drug companies and their piles of cash take interest in this illness and fund some real research.
  19. nikelboi

    nikelboi New Member

    i went to a prominent inf dis specialist, and she says there's no definable test. i sent her the reno lab redlabs website. we'll see what she says.

    i've also worked in the hiv field, and saw and heard eyewitness accounts of many people dying from treatments for hiv.

    so, although there's not one 'magic bullet' for 'curing' cfids/me from a naturopath perspective, perhaps there's a way to manage it (depending on its source(s), which could be variable for a wide cross section of people) with long term use of a combo of natural remedies, instead of trying a whole bunch of remedies for short periods of time out of frustration...compared to retroviral cocktails that killl many good cells and are directly related to further immune dysfunction and possible death.

    fyi, in the early days of hiv epidemic, many gay men were comitted to the healthy lifestyle and supplements, and were able to manage their disease and live a lot longer than their fellows who took AZT first thing. this is not advertized and barely admitted by the pharma industry itself.