My AZT + RAL Trial

[leaves]

Hey Sue
I still think AZT is scary stuff, but I would not be worried/ surprised that you see no results yet. xmrv is slowly replicating, and viral load will diminish only slowly, may take a long time (months?) before you see effects. However your body will hopefully adjust to the medicine (as is also the case for hiv patients), so Im NOT saying that you will feel that bad as you feel now for months.
Btw I m really happy you called your DR!! Good stuff! I understand your hesitations, but it is very important to trust him and be honest to him.

Sue please see http://www.avert.org/arv-treatment.htm under "side effects"

 

[leaves]

Uhmmm if you test pos for the virus then you have it now too, so your already living with it. I suggest you just carry on
seriously I wouldn't be too dramatic about it, a lot of people have aids and meaningful lives. Forgive me but I have trouble Understanding your position: you mentioned that your current health state is so bad that you don't think it's worth living, then the potential to improve that state can only mean you are better off no? I just don't see how an increase in information ( I.e. Receiving info on a virus that you carry right now) can make you worse off, if anything it increases your options. Oh well I guess we are all different. I too find it unfortunate that it will be hard for me to find a partner or have children but I would find it e en more unfortunate to not know and infect them.

 

[Noreen Martin]

Also, I would recommend that you talk to those in the AIDS community about their viewpoints with AZT. Check out some of the AIDS rethinking sites such as Alive and Well or Alberta Reappraising AIDS Society and read up on AZT. Many people lost loved one due to this drug.

 

[Noreen Martin]

I am wondering why your doctor didn't give you a combination drug, a protease inhibitor. Do you realize that AZT is on California's list of carcinogenic drugs? AZT was originally designed for cancer patients in the 1960's, but it failed. In the 1980's it was pulled back off the shelf for AIDS patients. Many believe that it killed almost all who were on it. Now, better designed protease inhibitors are given. If given a choice between AZT and nothing, I would choose nothing!

 

[leaves]

i just always think negatively i guess lol

Heheh time to let those Spring feelings in!

 

[leaves]

I am wondering why your doctor didn't give you a combination drug, a protease inhibitor. Do you realize that AZT is on California's list of carcinogenic drugs? AZT was originally designed for cancer patients in the 1960's, but it failed. In the 1980's it was pulled back off the shelf for AIDS patients. Many believe that it killed almost all who were on it. Now, better designed protease inhibitors are given. If given a choice between AZT and nothing, I would choose nothing!

Killed almost all? That seems unlikely. A friend of mine with HIV was on it, he was doing well on it, and is still doing well, almost 20 years later

 

[_Kim_]

I am wondering why your doctor didn't give you a combination drug, a protease inhibitor. Do you realize that AZT is on California's list of carcinogenic drugs? AZT was originally designed for cancer patients in the 1960's, but it failed. In the 1980's it was pulled back off the shelf for AIDS patients. Many believe that it killed almost all who were on it. Now, better designed protease inhibitors are given. If given a choice between AZT and nothing, I would choose nothing!

One of my clients, a GP, was in yesterday for a massage. She pointedly asked me if I would consider trying AZT even without a positive test (like ladybugmandy, I tested XMRV-). I asked her what her experiences with AZT were and she said that the HIV patients she worked with who were on AZT fared well.

I'm not saying that AZT is safe, but I wanted to point out that there is not consensus among medical professionals regarding the risks vs. benefits.

 

[leaves]

I totally agree. I'm sure azt isn't healthy, but so is having a retrovirus.
That's not to say I think we all should start popping azt. If possible I think we should wait or try safer options. However Sue is now treated and under dr supervision, and I think that she and her dr will know what's best.

 

[Navid]

I am wondering why your doctor didn't give you a combination drug, a protease inhibitor. Do you realize that AZT is on California's list of carcinogenic drugs? AZT was originally designed for cancer patients in the 1960's, but it failed. In the 1980's it was pulled back off the shelf for AIDS patients. Many believe that it killed almost all who were on it. Now, better designed protease inhibitors are given. If given a choice between AZT and nothing, I would choose nothing!

noreen:

welcome. you have posted so much interesting information and really offer us some perspective and knowledge that has not been available from other posters experiences. so thank you.

i would like to, however, defend sue's position in trying AZT and point out that your stmt of choosing nothing over azt is somewhat judgemental when you know little to nothing abt sue's situation. i only know sue's situation from reading her posts on various boards over the past several years. she has tried MANY different treatments and has gotten to a point where she would rather be dead than feel as sick as she does....instead of choosing death, she is still fighting and trying to find a treatment that will make her feel better.

your statement is a warning to her based out of concern....but before making such a statement I think you must first understand the place sue is coming from.

right now cfid's patients do not have the option of trying less toxic hiv treatments. azt is the ony hiv drug currently available and even getting a doc to give you that takes a lot of maneuvering.

hope i didn't ruffle your feathers....though i too am worried for sue, i completely understand where she is coming from in her willingness to try anything to feel better....when you feel your only other option is death.

warmest regards, lisa:Retro smile:

 

[Noreen Martin]

Not at all, I know many HIV+'s whose mates were on it and are no longer here. Remember, AZT back then was given alone and in very large doses. As I always say, it is the individual's life, if she wants to take the drug, that's her business. Reread my post, I started that I would not take it. I personally would not take the cancer risk and other risks associated with it. It certainly failed as a cancer drug.


Here is only one article about AZT, there are many.
http://www.oldamericancentury.org/azt.htm

 

[cfs since 1998]

I am wondering why your doctor didn't give you a combination drug, a protease inhibitor. Do you realize that AZT is on California's list of carcinogenic drugs? AZT was originally designed for cancer patients in the 1960's, but it failed. In the 1980's it was pulled back off the shelf for AIDS patients. Many believe that it killed almost all who were on it. Now, better designed protease inhibitors are given. If given a choice between AZT and nothing, I would choose nothing!

Because AZT is one of only 3 approved drugs that can inhibit XMRV. NONE of the protease inhibitors have worked.

 

[Noreen Martin]

Maybe they haven't tested them all. Every set of anti-retrovirals that I ever was on worked for my symptoms and contiune to do so.

 

[Hope123]

Yeah, I agree with the above posters.

Noreen, I've taken care of HIV+ people and had a friend die of AIDS. I saw kids die from AIDS. AZT helped many of them to survive until other drugs were available. AZT continues to be part of some of the medication combinations that some HIV patients continue to be on. AZT is also used to help prevent babies from getting HIV from their HIV+ mothers. Like all drugs, it has possible side effects and needs to be taken under medical supervision which Sue is doing. I'd also advise you to check out the some of the research articles on this site, particularly the one yesterday which tested XMRV against 40+ antiretrovirals.

In terms of getting information about antiretroviral drugs, I would advise people to get it from well-established sites like WebMD or Medline Plus or HIV non-profits and always, always check when the site was last updated. I have come across sites, CFS/HIV or otherwise, that had info that seemed off and when I checked the last time it was updated, it was years ago.

 

[kurt]

hi all my doctor said i can take gravol for the nausea and that all hiv drugs have side effects including tenofovir. he says that i should adjust to azt in a couple of weeks and maybe the nausea would get better. he couldnt really answer how long it would take to feel better on azt for xmrv. i guess no one knows at this point.

definitely no improvements so far for me.

Just a thought - do you have the drug sensitivities common in CFS? Many of us have impaired glucuronidation (ability to detoxify xenobiotics). That is a known interaction problem for AZT (see 'Side Effects' Here). In my own case I know I have P450 problems and often have to take much smaller doses of many drugs than a non-CFS person. Sometimes I find that micro-doses (eighth or even sixteenth) are the same for me as a full dose for a non-CFS person. So maybe given that AZT has known side effects related to glucoronidation maybe much smaller doses would be appropriate.

If a small dose of an ART drug like AZT is just as effective for drug-sensitive CFS patients who harbor retroviral infections as a full dose for a non-CFS person, that might be important to learn.

 

[Noreen Martin]

Maybe some of you folks should read what others doctors and investigators have to say about AZT. Watch the following video. Yes, these people are angry but they have been lied to by the system. How would you react if you had been poisoned? As stated, if any of you want to take a known cancer causing agent and bone marrow suppressor, CD4 reducer, etc. then go for it, its your body!
http://www.youtube.com/watch?v=dkZ6hNp3EMw&feature=related

 

[Noreen Martin]

I want to give you folks one more link with a wealth of info about AZT: http://www.virusmyth.com/aids/index/azt.htm

Then I am moving on, as stated the choice is yours, I am only the messenger and I feel that you should have both sides of the story, when considering this important decision.

 

[MEKoan]

Maybe we should take this conversation off Ladybugmandy's thread. I have followed her story for many years on other boards and know how much desperation she feels. She is an adult and has a right to do what she feels she needs to do. I appreciate others wanting to help and inform her and that has been done.

There is a bigger conversation to be had now: The advisability of AZT as a treatment for ME/CFS if XMRV proves to play the role in our illness that HIV plays in AIDS. So, let's take this really important conversation to its own thread?

yeah?!

 

[Lily]

Maybe we should take this conversation off Ladybugmandy's thread. I have followed her story for many years on other boards and know how much desperation she feels. She is an adult and has a right to do what she feels she needs to do. I appreciate others wanting to help and inform her and that has been done.

There is a bigger conversation to be had now: The advisability of AZT as a treatment for ME/CFS if XMRV proves to play the role in our illness that HIV plays in AIDS. So, let's take this really important conversation to its own thread?

yeah?!

Please do, Koan. And thanks

 

[leaves]

Noreen:I don't think you understand : Sue already made the decision. We already had this discussion, please see the earlier posts in this thread. I think our job is to respect her decision and support her.
Koan: yes, good idea. I want to discuss azt, just not question Sue.

 

[Navid]

There is a bigger conversation to be had now: The advisability of AZT as a treatment for ME/CFS if XMRV proves to play the role in our illness that HIV plays in AIDS. So, let's take this really important conversation to its own thread?

yeah?!

yes. great idea...but should we have an admin move noreen's very interesting and useful info/links to that new thread, so that the info is not lost and or forgotten?

thanks koan.

thanks noreen.