My AZT + RAL Trial

[Noreen Martin]

I would say yes, since I had the chronic fatigue long before the AIDS, but who knows for sure what I had in the mid 1970's, when my symptoms first appeared, as we didn't know about AIDS then. I personally believe, knowing my entire history, that I progressed into AIDS, after all, it is a immune deficiency disease and over time, my body/immunity was deteiorating. It would be interesting to have others CD4's tested who have chronic immune problems, maybe then, many HIV- cases of AIDS would arise and would have to be addressed.

 

[Ecoclimber]

A Word of Caution:

FYI
Don't want to get into a

but....

I went to one of the top doctors in the country on infectious diseases Dr. Michael R. Cairns immunologists and infectious diseases specialists concerning treatment for XMRV virus. He treats many HIV patients. He says it's too early to determine the connection between XMRV and CFS and the appropriate treatment regime to use. He talked about the early days of HIV out break and how they gave too many and too high of dosages of a very highly toxic treatment protocol to AID patients with very serious side effects and computations. He would not advise anyone taking such treatment until more research is conducted on XMRV to determine whether it is a trigger mechanism or itself is being triggered by something else. He recommends holding off until more data and research is done. It could also put the doctor at risk for malpractice claims if things do not go well since the treatment protocol has not been tested, approve and certified by the CDC for the treatment and use for treating xmrv and CFS. It's in this case where it is being used off label. The science is not there yet but just around the corner. I would wait.

 

[leaves]

i wasnt gonna post this yet cuz its somewhat transient but i think i am experiencing a little improvement already. just a tiny bit of improvement in fog and some improvement in stamina. just a small amount but i think its there. 9 days on azt

I am so glad you are feeling a bit better!! :victory:
take good care, I'll keep my fingers crossed

 

[cfs since 1998]

i wasnt gonna post this yet cuz its somewhat transient but i think i am experiencing a little improvement already. just a tiny bit of improvement in fog and some improvement in stamina. just a small amount but i think its there. 9 days on azt

Thanks for the update. I really hope this is a good sign and that the AZT is working. In my experience it is just hard to tell the difference between day to day waxing and waning of symptoms and real permanent improvement, but I really hope it's the latter. Definitely keep us posted.

How have your side effects been? I remember you complaining of nausea and such when you started. Has that improved?

 

[Hope123]

FYI
It could also put the doctor at risk for malpractice claims if things do not go well since the treatment protocol has not been tested, approve and certified by the CDC for the treatment and use for treating xmrv and CFS. It's in this case where it is being used off label. The science is not there yet but just around the corner. I would wait.

Malpractice claims need a number of factors to be held up legally, including someone to actually sue the physician and proof of harm by the specific medicine vs. other factors. Certainly there are healthcare practitioners who prescribe medicines of questionable value and possible harm for CFS but off-label use is common not just for CFS but for other illnesses. The main thing is for the physician and patient to have an understanding that treatment is experimental and off-label.

Secondly, standard of care is influenced by but not solely determined by the CDC, any governmental agency, universities, or non-profit group. These may be used as references but community standards, what is out there in the medical literature, and medical experts are also used.

I'm not encouraging people to pursue or not pursue AZT for XMRV -- indeed caution should be taken this early out -- but I wanted to clarify the legal parts about this. I don't want people getting the impression that the CDC is the main deteriminant of care even for infectious diseases.

 

[jono_aus]

still noticing definite improvements in CFS symptoms on the AZT...i wonder if doc will make me stop the drug.

That's great to hear you are starting to notice improvements. I am sure there are a lot of people (like me, long time lurker, first time poster) following your thread with great interest (and hope!).

 

[alice1]

How are you feeling today Sue??
xo

 

[aiden424]

I am very drug sensitive too. It always scares me to start new meds. I always start with just a tiny amount and work up. Most of the time I can't get to a full dose. I think if I ever had to take AZT I'd want to start at a childrens dose. I have no functioning thyroid but I only have to take the lowest adult dose of synthroid to get a normal TSH. My thyroid doctor said I was odd. I was on heparin once and could only take about a fourth of an adult dose to get a normal lab count.
Kathy

 

[cfs since 1998]

why isnt anyone reading this thread? isnt it big news that i am recovering on azt?!?

lol

lol I am reading it--at the edge of my seat. You said you had improved but are plataeuing, I didn't interpret that as "recovering". If you are that is exciting news. Could you describe more quantitatively how you are now versus, say, a month ago? Eg, an energy score, improvement percentage, etc.

Good luck and I hope you continue to improve.

 

[Navid]

sue:

i am also at the edge of my "seat"....but so far i didn't get that you were improving...in fact my take away was that the drug was making you feel crummier.:innocent1:

so yes, please more details.

very happy to hear you feel you are recovering.:victory:

warmly, lisa

 

[Doogle]

why isnt anyone reading this thread? isnt it big news that i am recovering on azt?!?

lol

Are you kidding, we're all reading holdng our breath and rooting for you to get better. LOL

 

[heapsreal]

im reading, keeping an eye on ya, keep going. Can you give us a score of lerners out of 10 scale from pre treatment and now, cheers!!!!!!!

 

[MEKoan]

I've been reading, too, but I didn't think you were improving either.

Very happy to hear that you are!!!

 

[alice1]

Hey Sue, we're all sitting on the edge waiting for more info......hopefully you'll notice more improvements in a short time.
Don't add anything unless you speak to your doc..

 

[rebecca1995]

why isnt anyone reading this thread? isnt it big news that i am recovering on azt?!?

lol

Sue, are you really recovering?!? We want to know more! Thanks for being a pioneer!

 

[glenp]

oh wow I am so happy for you Sue.

Do you get blood tests tomorrow?

glen

 

[Hope123]

Sue, see if you can get your doc to order natural killer cell counts and activity on you to monitor. These tests are available through either Quest or Focus in the US. Also, consider having your doc shoot an e-mail to Dr. Klimas for how often to monitor. Even if you had "normal" values before, if there is a big increase in activity especially, this would be something!

 

[ukxmrv]

Sue,

You have a firm following of cheerleaders here, all shouting for you!!

It's the pioneers and the very brave (and desperate) who will light the way for the rest of us.

After over 2 decades of experimental treatments I'd like to finally try something that works. It's been a long wait for many of us and many repeated personal and lonely trials of different medications.

We know what you are going through.

 

[fds66]

I'm following your progress Sue - very interested in how you are doing and so pleased that you are recovering. Keep us posted.

 

[lostinthedesert]

Many watching

Hi Sue, i think many are watching, praying, hoping etc for you. I know i am. This thread has almost seven thousand views so far. I would not be suprised if some among the powers that be are also watching 8) . Peace, S