My AZT + RAL Trial

Kati

Patient in training
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Good luck Sue, let us know how you're doing and am glad you have a doctor that follows you.
 

SunnyGal

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Good luck, Sue, and thanks so much for keeping us posted on how you do. Hope you get significant help from this.

Sunny
 

subtr4ct

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Best of luck. Please do keep up posted not only on your AZT experience but on your XMRV status as well. I'm sure reports of your AZT experience will be greatly appreciated by many here.
 

Navid

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sue:

i hope, hope, hope the azt helps you feel a bit better. all my thoughts are with you. good luck. keep us posted.

lisa
 

Esther12

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Surely you should at least get tested for XMRV first?

This all seems really premature, and I'm sorry you feel so desperate that you're willing to try this. I think it's a bad idea, but I know we all have to make our own decisions. Hopefull you'll feel better soon.
 

Nina

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Sue, I think only the very, very ill might be able to understand. And maybe not even all of them. Different people don't always make them same choices given the same circumstances.

I totally understand what it feels like to try ANYTHING.

I wish you the best of luck that this treatment will help you!! Keeping you in my thoughts.
 

garcia

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the wpi has knowledge of 3 people in the US on azt 300 mg for CFS. they noticed improvement in 2 weeks (i am sure they were XMRV+, though)
Hi Sue,
many thanks for keeping us updated.
Do we have any info on what level of improvement the CFS patients on AZT experienced?
 

omerbasket

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Sue,
Good luck with AZT - hope it will make you feel much better. Your case would not be any kind of a study (because it's a single case), but it will surely be very interesting for me - and moreover, if that drug do works for you, I think it might say that it works against XMRV and that XMRV is the cause of ME/CFS.
 

Hope123

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Sue, my best wishes to you!

AZT, like all drugs, has side effects but if you have someone knowledgeable following you, that makes a big difference. As with everything, risk and benefits must be weighed individually.

If you do get better and feel up to it at some point, please ask your doc to publish a case report in the medical literature. If he doesn't want to do it, ask if someone at the WPI would be interested. One person does not make a study but case reports are what can initiate formal studies.
 

kat0465

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Sue,
Im keeping my fingers crossed also! hope you have an easy time with the med and it does the trick for you.
just remember theres a lot more meds to try if this one isn't right for you. your a tough woman, and i appreciate you putting yourself out there to try that med!
whatever happens, it will benefit all of us! Thank You.
Kat
 

Hope123

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thanks!

hope...i think the reason no one has yet done a formal azt trial is that there isn't money in it....the patent's expired. i could be wrong but it seems that if it was a new drug with potential of huge profit, a trial would have happened last year.

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