Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Nov 17, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hello. anyone out there trying AZT for XMRV?

    i heard a rumor that they are recommending low dose AZT for desperate people.

    wonder if i should put "exit" plans on hold and try this drug...? what do you think?

    by the way, i am bedbound and in constant agony after 17 yrs of CFS.

    thank you
  2. TigerLilea

    TigerLilea Active Member

    At this point in time, it would be irresponsible for any doctor to prescribe AZT for XMRV until more is known about it and its 'possible' connection to CFS.
  3. denis321

    denis321 New Member

    but the concern with AZT (not counting side effects) with HIV was that if you gave it alone, without other HIV meds, that HIV would become resistant easily to AZT. Hence the need for a combination of antiretrovirals when treating HIV.

    However, XMRV supposedly doesn't mutate as quickly from the snippets I've heard.
  4. TigerLilea

    TigerLilea Active Member

    Sorry, but I will continue to post my opinions, just as you are free to do also. If this is being judgmental then so be it :)

    We don't know at this time that AZT will help people with CFS; it is pure speculation at this point in time.
  5. AuntTammie

    AuntTammie New Member

    While I am not generally big on meds, I do think they have their place.....and many Drs prescribe all sorts of meds off label. That is basically what this would be....and in a case where someone has tried everything else and is ready to end her life, she has nothing to lose and everything to gain. It's not like she will be worse off if it doesn't work. (Yes, I know the risks of side effects, but I still say they are worth taking a chance on if the only other option she is considering at this point is death.)
  6. TigerLilea

    TigerLilea Active Member

    I think you better look up the definition of the word "judgmental".
  7. TigerLilea

    TigerLilea Active Member

    Must be a slow day for you :)
  8. karynwolfe

    karynwolfe New Member

    ...Ugh, guys, really. REALLY? This woman is on her last bit of sanity and you want to waste space arguing about doctor responsibility? Why not make your OWN thread or something if you want to bicker about the dictionary, my goodness, I'm sure ladybugmandy doesn't care about you two fighting when she's too busy trying to decide if she wants to LIVE or not.

    cfssince1998, it's interesting that olive leaf extract is mentioned there, because it's one of the ONLY things that has helped my M.E.. I've been on it for several years and I know it works, though it's very strong... I guess that's a good thing, though, when you're fighting retroviruses. I'm glad to see other people are taking it into consideration too! It tremendously helps my cognitive functioning and helped me go into remission once. Ha, I feel like I already have half of it beat!

    Granted I'm still bedbound because of Lyme complicating things, but just having something that helps, just a little, is enough to help you hang on.

    So I'm with Tammie, if the only other option is suicide I don't see what you have to lose from asking to try something that AT LEAST has a potential benefit.
  9. TigerLilea

    TigerLilea Active Member

    Even though someone is suicidal, I can't see a doctor prescribing a drug such as AZT for something that is still an unknown at this point in time. I was reading about antiretrovirals and they can be toxic and can have permanent side-effects. They are not the same as antivirals. Low dose naltrexone (LDN) has been shown to work sometimes as well as antiretroviral therapy in AIDS and is already an accepted treatment for CFS. This might be something that ladybugmandy would want to discuss with her doctor. I can understand that she is desparate for some relief, however, a doctor can't just throw out any old prescription med because it "might" help.

    There are always other options than suicide no matter how bad things seem at the time.

    BTW - I'm fed up with being told that I'm not allowed to voice my opinion on the subject of XMRV because someone happens to have a different opinion. As someone mentioned on another group, critical thinking seems to have disappeared from the XMRV conversation.
  10. gapsych

    gapsych New Member

    Ladybugmandy is asking for opinions at least that is my take on all this, but really can not speak for her.

    LB There have to be other options. I know how you feel. Please know that we all want to help even if we have different perspectives.

    Is there any way you can get more symptom relief? I don't know if you have already answered this but will look at your other posts.

    Do you have anyone staying with you?

    I have no idea about what to tell you on the meds. Are you still seeing Dr. Lerner or another doc? Maybe they could give you some advice.

    You can call a hotline and be able to vent to someone and perhaps get some social services in place or even someone going through what you are and be able to talk on the phone if you are up to it. If you can not post, can someone else post for you?

    I am sure sorry you are feeling this way.

    Take care.
  11. gasolo

    gasolo New Member

    Hi Ladybugmandy,

    Its seems to me you have come to a really critical time in your life. I assuming you have exhausted all your options and see no relief from your suffering.

    From what I can tell, there is no proof that AZT helps XMRV infection or that XMRV is the root cause for cfs. It is certainly possible that it is and it is also possible AZT might help.

    Personally if suicide was my next option, I would try AZT. What do you have to lose?
    If it doesn't work, you,re still alive. You could suffer from some potential side effects from the medication, but that means you are still alive and didn't commit suicide. Maybe that small amount of hope is enough to keep you alive. Just my opinion.

    [This Message was Edited on 11/17/2009]
  12. AuntTammie

    AuntTammie New Member

    I am very aware of the possibility of side effects from AZT - I mentioned that in my previous post & I certainly wouldn't advise everyone with CFS to just try AZT. In fact, at this point I wouldn't advise most people with CFS to try it. I agree that we need to learn more; however, I also believe that when things have reached the point where one is seriously considering suicide and has already tried everything else, it would be more irresponsible to withhold something that might help.

    Like I said before, Drs commonly prescribe meds off label. I do not necessarily think that is always the best idea, and some of the meds that they do this with have been shown to cause some pretty serious, sometimes permanent side effects. AZT also could cause some, and it should not be prescribed lightly. Any time a Dr prescribes something, esp when it is off label, and esp when the risks are high, he/she should make sure that his/her patient is fully aware of those risks. The final decision, though, should be up to the patient. Look at it this way: the "side effect" of going on as she has been could well be death. The side effects of AZT might be bad, or they might not be so bad, but they won't be as bad as death.

    and re your comments about voicing your opinion, I was not part of that argument.....I was simply giving my opinion about AZT as an option
  13. deliarose

    deliarose New Member

    It seems to me that what you need is some relief from the pain you're in and then a period of stability while you consider what to do next.

    I can't help wondering if what you really need right now is a good detoxification expert who can help your body recover from the drug regimen you've been on.

    Of course, I haven't seen your labs, but I suspect that the pain you're in may be due to either drug reactions or a build up of toxins caused by a dysfunctional detox system and some pretty toxic drugs.

    I am not bashing the drugs. Not at all. In fact, I am struck by how well your brain is still working for a long-term PWC, and perhaps that is one of the benefits of antivirals.

    But I know from personal experience that the detoxification systems are not working in long-term PWCs, and I can't help wondering if that's why you feel so awful.

    Perhaps you need to work on opening those up, restoring glutathione levels etc, and getting rid of some of the toxins before you pursue further drugs?

    I hate to make specific suggestions, because I think us long-time PWCs are very tricky cases to treat, but if you can't find anyone to advise you, maybe you could try tiny amounts of non denatured whey or nebulised glutathione. Cheap remedies that you could try at home?

    What about Dr Alison Bested. She's in toronto, isn't she? Maybe she would be willing to see you pro bono.

    Please,take the pressure off yourself. Just for a few weeks, don't stress about the next silver bullet, just try and be kind to your liver and your head and neck.

    I know you need hope that you can recover, but first you just need to feel ok again, and then you can think about the big questions.

    Just my 2 cents.

    [This Message was Edited on 11/18/2009]
  14. deliarose

    deliarose New Member

    I have cut and pasted some info that Jam388 posted about what her doctors had her on to detox. Maybe you could discuss these ideas with a friendly doc?

    I should probably also mention that some people find it helpful to use binders like activated charcoal to bind toxins and prevent them being recirculated.


    My doctors are doing some really interesting things. One of the IVs was a phospholipid exchange thing. It was weird as I could feel something happening in my liver when they did it....felt like a coating thing happening or something.

    Nebulizing glutathione throughout the day, small amounts at .25ml.

    Starting CSM/Glucomman cocktails at 1/4 tsp x3 daily ...1/2 hr before meal with fat and 1 hr away from Meds/Supps. Try managing that with as many things as they have me on....sheeeeeesh. The CSM/Glucomman binds toxins and is timed somehow with when the liver dumps bile into the digestive process. That somehow makes the elimination process more effective if I am understanding it correctly.

    Then, at night time (4 hrs away from protein) they have me taking 10 magnesium oxide tablets which is to produce a huge flush <literally!!!> for 4 hours the next morning. This is so the binded up toxins <above> are not sitting in my intestines for longer time where there is some reabsorption risks (?) I hope I have all this stated correctly. Please understand that I have just started with this.

    So, I do that for 7 days and then have a phone consult to re-evaluate how I am doing. Thusfar I can feel things are shifting. I feel less toxic. Less like I am dieing. My doctor said if this past week went okay she would increase the doseage and add other things.

  15. ladybugmandy

    ladybugmandy Member

    thank you guys. i have read all the posts but remember nothing lol...brain is totally shut now.

    i will contact old doctor...just had blood test after many months...will see how my liver is.

    i had arranged to go to Switzerland in March. i am, so sick i can hardly move now. its really really bad.

    i do not think it is from the drugs. it is intense severe extreme brain swelling from XMRV, i am 100% sure. will take the XMRV test.

    low dose azt is being recommended because i am very desperate - very reliable source from the WPI camp.

    still don't know if i can make it to doc here or if doc will even prescribe azt. but i read azt warnings; they dont seem any worse than valcyte.

    really...i just don't want to take azt. i want to leave 100%...but sister is so sick...and mom is so distraught she hadly eats and is very depressed. sister is so much worse since i told her that her doc is furious with me. so cannot leave in peace.

    very bad place.

    thank you for caring, love you


  16. ladybugmandy

    ladybugmandy Member

    wanted to ask big favor. if anyone out there gets well one day...and things get too much for me to take and i go, wondering if someone can do a very very big favor.

    can someone call my sis from time to time to see if she is ok..if anyone is bothering her, bullying her, etc?..if she is in a good group home?

    i know this is an insanely big favor lol..but thought i would try.

  17. ladybugmandy

    ladybugmandy Member

    thank you very much. you are a kind soul

    my sister has: severe OCD, Tourette's, ODD, maybe pervasive developmental disorder but they are not sure, maybe schizoeffective but they are not sure..they change their minds a lot...maybe some other things. very significant illness....started when she was 7-ish.

  18. jenbooks13

    jenbooks13 New Member

    I guess I will say again even though you didn't seem to consider it, that a mild hyperbaric or a normal clinic chamber will take away those symptoms of brain swelling.
    Then you can re evaluate.
    If you email me at jenbooks13 at hotmail dot com I can find out where you live and try to find out what is available near you.
    Perhaps you don't believe me, but it will work.
  19. ladybugmandy

    ladybugmandy Member

    was reading about AZT. apparently, it was shown to have potent activity against murine retroviruses in the 1980's:

    and its available in generic form

    and it looks less dangerous than valcyte...

    so why not? i've been popping valcyte for over 3 years now.

    i think i shall start it next week.

    wonder how long i should keep taking the other antivirals..or if i should taper them off now...or if i should stop them altogether...i'll ask the NYC doc....i get a little worse when i stop them for some reason. maybe my HHV6 is awake afterall.

    will AZT snatch me from the jaws of death? lol stay tuned....
  20. TigerLilea

    TigerLilea Active Member

    Sue - Please, phone your doctor today and let him/her know how depressed you are. You need to talk to someone. Have you considered checking yourself into the hospital? I know that right now everything looks bleak, but it can get better. In the hospital, in addition to helping you with your depression, they can also do a lot of testing which wouldn't normally happen if you were just going into your doctor's office.

    I don't know what drugs you have been on, but Deliarose is correct in that part of your problem could stem from the toxicity of some of these drugs having built up in your body, especially if you have been on multiple drugs.

    You obviously have people in your life who love you very much and I'm sure you love them just as much. I don't think that you really want to die; you just want the pain to go away. Please - phone your doctor right now! A few weeks from now you could feel completely different.

    ((((Sue)))) If you can't do it for yourself right now, do it for your mom and sister.

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