Tuesday, January 3, 2012
Coping With HIV Medicine Side Effects - HIV Center - EverydayHealth
"as many as 1 in 10 people with HIV will experience serious side effects from an HIV medicine."
As more ME/CFS patients are being prescribed anti-retrovirals, it's important to know how they may affect you. For just two examples:
"Liver failure. This is most likely with the HIV medicine nevirapine, though other HIV medicines may also cause damage to your liver"
"Rash. This symptom is often part of a hypersensitivity reaction (allergic reaction) to your HIV medicine. You should always let your doctor know if you have a rash because this can become life threatening."
Pro and con: one person told me to absolutely not take AIDS meds for my CFS "they're toxic and may kill you." Conversely, a PhD virologist pointed out to me that duh, they have to be toxic to kill the virus, and stated flat out that "if it were me, I'd be on AZT in a heartbeat".
At this point, I don't know what virus I have. C-Reactive Protein says there's some infection/inflammation going on in my body, but doesn't identify which one -- for my purposes at the time, it was enough to have a wildly abnormal objective blood test to prove it's not all in my head. Knowing that the first XMRV test was simply preliminary, they were working to improve it, I held off on having that done. And also a bit of concern that if I had an XMRV test and it was negative, the Disability judge who was cherry-picking evidence was likely to say "she doesn't have XMRV, therefore she's not disabled", once again ignoring that the C-RP showed something way out of whack. Now XMRV testing has been discontinued.
So I haven't yet had to make the decision whether to risk my future by taking AZT in the present. My health is slowly improving without it. When the time comes that someone does identify which virus I have, and recommends AIDS meds, I will have to sit down and do some long hard thinking, and debating with my advisors. I came to grips with my own mortality at 29 during my first relapse, and realized that in those short years I'd done and experienced more than many people do before they die; if I never got out of the bed, I'd still be able to point to a lot of things I'd accomplished. In the decades since then, I've accomplished more. There are still things I'd like to do (write that book, for one), but I'm tired of living the life I'm living -- if some drug can give me improved quality of life now at the expense of taking 10 years off the end of my life, it'll probably be a trade I'm willing to make.