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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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and it will be several months before it is known which existing HIV drugs will work against XMRV - only a couple Reverse Transcriptase inhibitors, and Raltegravir have shown early promising results.
Before I get excited (which I already am), is this person trustworthy?
My research interests is retroviruses - which was an area of active research at Orchestra Therapeutics. The recent discovery of XMRV as a potential link to Chronic Fatigue Syndrome has become very much of a research interest of mine, as my younger sister is has struggled with the disorder since the age of 19.
Jen, he has a lot more to say, and I'm finding all of it interesting. His most recent article prior today was about Raltegravir...
His blog is well worth reading. He talks some about treatment in today's blog too.
I think that because XMRV is a slow virus, a 2-3 month course of anti-retroviral therapy might allow the immune system to recover enough to keep XMRV in check. That would be an excellent first step. However this is not a cure, and latent XMRV could become re-activated if the immune system is presented with a major challenge ie:: influenza, surgery, major stress.
Thanks, Daisy, I'll look it over. Wish someone would test ticks.
The possibility of an insect vector cannot be ignored. Mice being a reservoir of XMRV, leads to the distinct possibility that blood sucking insects such as mosquitoes, sandflies, horse flies, and ticks could transmit the disease to humans.
AZT is so toxic. The question is can you pulse some relatively nontoxic antiviral (XMRV has a low mutation rate) as a monotherapy--get it down, go off, go back on when it starts to replicate again? Or do you have to be on something toxic, with serious potential side effects of it's own, for good?
Much research to be done.
And where does chronic lyme intersect? How many of us have XMRV? And is it transmitted in ticks.
I still have so many questions...