My AZT + RAL Trial

[JAH]

I found this website because I googled "azt and cfs". I would absolutely try azt if my doctor were willing. She told me that some doctors tried azt 20 years ago, for cfs, but it didn't work. Still, I think if I test positive for xmrv, she might be willing to prescribe it. (I've thought about getting azt from mexico- but I wouldn't take it without being under a dr. supervision) So I wish you only the best, and please let us know how you are doing.

JAH

 

[cfs since 1998]

Good luck ladybugmandy. I am rooting for you and hope this works! I am glad you will share your experience with us; it's too bad the other three patients on AZT aren't here.

 

[guest]

Good luck ladybugmandy!

 

[subtr4ct]

new info on antiretroviral drugs that may work against XMRV

he refused to give me raltegravir

There is newly published evidence that raltegravir inhibits XMRV in vitro (see my message (#4) in this thread). Maybe that would persuade your doctor to let you try raltegravir?

 

[cfs since 1998]

There is newly published evidence that raltegravir inhibits XMRV in vitro (see my message (#4) in this thread). Maybe that would persuade your doctor to let you try raltegravir?

Yes, please show that info to your doctor Sue. It says XMRV is 2.5-fold more susceptible to raltegravir than HIV. Maybe even if he is hesitant he will be willing to at least prescribe a half-dose based on this new research. It is supposed to be safer anyway.

 

[Hope123]

I found this website because I googled "azt and cfs". I would absolutely try azt if my doctor were willing. She told me that some doctors tried azt 20 years ago, for cfs, but it didn't work. Still, I think if I test positive for xmrv, she might be willing to prescribe it. (I've thought about getting azt from mexico- but I wouldn't take it without being under a dr. supervision) So I wish you only the best, and please let us know how you are doing.

JAH

Yeah, I'd be interested in hearing about it too if there are any published reports or who tried it out. We have intrepid people on this forum who will dig it up if can get a name or institution. Are you sure your doc isn't confusing AZT with acyclovir, where there was an NIH trial about 20 years ago?

http://content.nejm.org/cgi/content/abstract/319/26/1692

(Note that the trial of acyclovir was short - only 30 days - in contrast to the months of antivirals people who have recently benefitted from antivirals take.)

Another issue also is who those folks with CFS actually were as Holmes criteria was just established then.

 

[Esther12]

wow 2.5 more times? very nice.

i just wish i had a positive xmrv test. i keep worrying this wont work either.

thanks all
love
sue

Feel free to ignore me - but I feel I should advise you against taking AZT at this point one more time.

I know we're all in different situations, and that you feel desperate, but I don't think it's the sensible thing for CFS patients to be doing at this point, especially without a positive test result for XMRV. I hope you don't take this the wrong way, and I'm certainly no expert on any of this, but from what I've read AZT is a pretty serious drug to be using speculatively. Take care.

 

[calzy]

:

Well, let's just say I can't say anything right now.

come on Hope!!! dont do that...spill!:Sign Please::Sign Please:

 

[Hope123]

:

come on Hope!!! dont do that...spill!:Sign Please::Sign Please:

Sorry, I don't have anything confirmed yet. But as you probably know from Reno's newspapers, the WPI has had big pharma talking to them since last year so we'll see. I don't know how patent laws work either but sometimes giving a drug a new indication allows pharma to extend their patent so that might be where the interest comes in. (Any lawyers can comment here?)

A quick Google turned this up (from Johns Hopkins):

http://www.techtransfer.jhu.edu/bin...covered Indications of Known Therapeutics.pdf

(Interestingly, note the part where they talk about AZT's re-purposing from cancer to HIV drug!)

 

[jackie]

Hope...thanks for that link to the long-ago acyclovir "trial". As I was unaware of it...I read it and had to laugh at the brevity (30 days) of the NIH study!

I've been on it for 4 years...starting at 1200mg, and titrating up to 3200mg. (the amount of oral acylovir in the trial) at about year 1.5+. I had little improvement until about a year (or so) ago.

Thirty days!What were they thinking?! These protocols take TIME, imo!


jackie:Retro smile:

 

[DavidJ.]

good luck sue!

 

[guest]

Btw. 300mg are not that much. During the beginning when AZT was new, doctors used to presribe around 2g/day and the side effects were pretty strong then.
Side effects with under 500mg are maybe worth taking but I still worry about one special side effect: "A special kind of cellular DNA polymerase that replicates the DNA in mitochondria is relatively more sensitive to inhibition by AZT, and this accounts for certain toxicities such as damage to cardiac and other muscles."
But still, I hope it works.

 

[alice1]

Sue I pray this gives you some relief...I know you're not asking for the moon but to live at a tolerable level.
Your in my thoughts.
love
Al

 

[Doogle]

jah told me that 20 yrs ago, when retroviruses were first suspected in CFS, bay area doctors tried azt with no results. sue

Hi Sue,

I have been ill for 23 years in the SF bay area and very active in following what doctors did or didn't do here, even with the AIDS patients. I was getting Isoprinosine (Immunovir) and AL-721 from contacts in the Healing Alternatives Foundation about then. I was a support group leader in San Jose too, and I can't recall any CFS patients getting azt. That doesn't mean they weren't, but I would be surprised if I missed it.

 

[ukxmrv]

Brilliant news Sue, I have had so little success in drugs that even a short increase in functioning is to be treasured. Hope that it continues!

 

[jimbob]

hopefully this will have better results than the valcyte, were all pulling for you. glad that you have an infectious desease dr. looking after you. you're not alone in your desperation! got my fingers and toes crossed for you!

 

[omerbasket]

hi all. i have taken only 2 doses so far. there has been some nausea but nothing major. i know it is much much too early to say if azt is helping and maybe i am imagining it, but something good MAY be happening. 2 days ago, i had to force myself to help my mom run errands. normally, after a trip like that, i become severely ill and am bedriddein for at least a week. however, yesterday (the day after the trip), i got up and went to the fabric store for 2 hrs. that NEVER happens.

this could be nothing but wanted to report everything.

love
sue

Hi Sue,
As you said, it's probably much too early to know if that says something - but, Me, and I think other as well, would like to hear from you constantly about how the drug effects you - So I was glad that you wrote this, and more glad that these are some good news, even though we just can't say anything yet as to the effectivity of AZT on you.

 

[alice1]

WOW sue...I know it's very early but that outing would of cost you dearly before.
I'll be a little excited for you ok.
Al

 

[Navid]

yay
hip hip hooray
cheers
great news (for now and hopefully for ever after)
keep on improving
fingers crossed
can't wait to here more hopefully good news!!!!
:victory::Retro smile::Green hat::Sign Good one::Sign Good Job::victory:

 

[Hope123]

thanks all. wonder if valcyte and valtrex inhibited the xmrv a little bit (i know valtrex does inhibit HIV a little) but the xmrv quikcly rebounded? who knows...

whenver anything works the fog is supposed to go first. i keep hearing that. so unless there is a major dent in the fog, which is severe, i can't know anything. :-/

Sue, just wanted to remind you to rest up, even if it means not posting for a while. And to try to limit your activities (I know it's hard). If the AZT really does work within a few weeks, a few weeks of restricted activity will be worth it and at least woun't cause you harm.