Email from Klimas

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Nov 25, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i dont understand this. i could have sworn that low dose AZT was suggestd by Klimas (very hypothetically) for desperate patients in a past email...but now i received a reply to another email saying she knows no one on antiretrovirals for XMRV and that low dose of any antiviral is asking for trouble down the road because of resistance.

    now what?

    i want to do something and not just sit here dying when i am sure i have XMRV. i want to take something!
  2. mbofov

    mbofov Active Member

    ladybugmancy - I'm going to be trying low-dose naltrexone (see as soon as I get a prescription from my doctor. I see him in two weeks.

    Read about it - it's supposed to boost the immune system with very minimal side effects. It's helping some AIDS patients, people's Crohn's, MS. I'm hoping it will boost my immune system as I am almost constantly fighting a bug.

    There are a couple of yahoo discussion groups about it too.

  3. TigerLilea

    TigerLilea Active Member

    Hi Sue - We all want something that will take this illness away, or at the very least, lessen the symptoms so that we could lead a somewhat normal life. If it should turn out that XMRV is the smoking gun, I still think it will be some time yet before anyone knows what is going to help us. I don't think this is going to be an easy fix. And as there are subsets of CFS, it could quite well turn out that what will help one group, won't necessarily help the other subsets.
  4. ladybugmandy

    ladybugmandy Member

    thanks guys.

    benzodiazepines help too...does LDN help in the same way? benzos relax my brain fog a little and make me feel a little drunk. its pleasant.

    i guess that instead of AZT, i will ask my local doc for LDN.

    i wish i hadn't spread all over the internet that they are recommending low dose AZT! ugh. i hope no one started taking it.

    i cannot wait another 6-10 yrs. i will get cancer. i know it. i am too far into this mess.

    there has to be something else.

    why do i keep hearing that peterson told a patient to think about trying AZT and that some doctors are experimenting with it????
  5. wldhrt

    wldhrt New Member

    I agree with the others; LDN is definitely worth a shot. I do know someone who started on it a few months ago and she is now back to work! I myself am considering it, doesn't seem like there would be much to lose to try it.
    I would especially be cautious taking something as toxic as AZT in your condition. A last resort, possibly, but there may be other options for you still, like LDN.
    All the best,
  6. ladybugmandy

    ladybugmandy Member

    thanks :)

    i have been reading that LDN helps HIV patients because it increases the effect of the antivirals they take.

    but since so many people like it for CFS, i will try it.

    can someone tell me the dose to ask my doctor for?

    thank you
  7. mbofov

    mbofov Active Member

    ldn actually helps boost the immune system. Go to this website:, and then this page:

    This explains how it works, talks about dosage, etc. And Jam has posted very good information too. You will probably have to print this out for your doctor.

    Yeah, benzos are relaxing, but I don't think they do anything for your immune system.

  8. AuntTammie

    AuntTammie New Member

    a couple of things about cannot take opioid meds while you are on it, and it may decrease your need for thyroid meds, if you are on any of those.....also may cause insomnia

    also, my exp with it was that 4.5 mgs was WAY WAY too high to start.....was causing all sorts of problems for me (partially due to taking with armour, but not entirely from that).....had to go all the way down to .5 mg and stay there for a couple of just now on the first week of 1 far pretty good, but still having sleep issues (and I am taking it when I get up rather than before bed - taking it before bed was keeping me up all night and part of the next morning)

    I do notice less pain and a very slight increase in energy.....also since I started on it, my hair has stopped falling out and my skin is no longer so dry that it is painful.....also I think that it may be helping with weight a little bit (not losing any, but no longer gaining at the drop of a hat....of course I am having stomach issues, so the weight stuff may not have anything to do with the LDN)

    since it boosts endorphins, it could help with your depression, too

    and speaking of depression, I hate to say it, but the benzos could be contributing to that for you (but it definitely would not be good to just stop taking them cold turkey)....oh and the benzos act on gamma something (a neurotransmitter - can't remember the second part of the name rt now).....LDN blocks the opioid receptors and in doing so raises the body's production of endorphins
  9. ladybugmandy

    ladybugmandy Member

    thank you. i appreciate the information and help.

    i take 2 mg of lorazepam at night...not every night but most nights. sometimes i take 1 mg. i don't think it would be difficult for me to stop. i can sleep without it but it relaxes me a little and gives me a little relief.
  10. kat0465

    kat0465 New Member

    thier also giving it to cancer patients, and thier getting better! and like you, im really scared of the cancer thing with CFS.
    i've been on LDN for a couple weeks now, no side effects, its cheap, and i can tell a small difference. i plan on giving it a good 6 months & see what happens.

    give it a try, it can't hurt you, go to you tube & punch in LDN, theres tons of info, its really interesting & gives me some hope!!

    we can all use a lot of that!!Please don't stop the fight yet, i really do feel like were on the edge of something good.
  11. ladybugmandy

    ladybugmandy Member

    thanks guys. i will try the LDN for sure..

    jam...yes it was a blog where i read it too. that guy is a good writer!

    the AZT thing is really weird. i know that i got an email saying "very hypothetically, ...low dose AZT"...and i am 99% sure it was from dr. klimas, but i cannot FIND IT!!! it has disappeared.

    i feel like i am losing my mind.

    anyway, looks like another 3 month wait for any answers.
  12. spacee

    spacee Member

    Dr. Cheney wants his patients to take insoine and dimethylaminoethanol (DMAE) both purchased OTC cause they work like AZT?

    There is a special way he has his patients take them. Like only during the week and not on the weekend. Someone posted it here I do believe cause I don't make it to other boards except Facebook.

    I think that is something I would consider. But my pain level is going up so I am asking for LDN in January.

    We will work through this together!

  13. simonedb

    simonedb Member

    could you post a link to yr blog? or shoot me a note of it?
  14. spacee

    spacee Member

    So, you are the go to person on this site for info of this. Great! What is your blog, please? I have written your moniker down on my page with the OTC's names.

    Ok, I will not pass the word around that Cheney uses on his patients. It is coming back to my
    bad memory that he used it for the immune modulation.

    So we would use these supplements with the AZT if we found a doc to rx it and decided to go that route.

    I'm a bit scared. I already have autoimmune activation. In that 1994 book edited by Stephen E. Straus titled "Chronic Fatigue Syndrome", he puts retrovirus in the middle and circles it with a number of illnesses including "CFS?" and "Sjogren's?". I am now making antibodies for Sjogren's and about 4 others did too on a chitchat messageboard poll. I need a doc who has experience with both. Orlando probably has someone but I am too bad off cognitively to drive that far anymore. Well, sometimes things workout somehow.

    Thanks for answering my query!