I think it is definitely a risks/benefits analysis. But I also think anyone who watched AIDS patients dying in droves, then some patients rescued in the eleventh hour by the new cocktail drugs, wouldn't have the illusion that these drugs aren't powerful. I met a teenager with AIDS right before the HAART drugs came out. At that point, his death seemed inevitable. When I saw him a couple of years later, he was jubilant -- his viral load was next to nothing, he had his life back. From HAART therapy. He had previously not thought he would live to see 20.
One thing they do know about AIDS is that certain organ damage -- such as cardiac damage -- is more evident now because the disease has been allowed to progress, thanks to the drugs allowing people to live longer. In other words, there was a lot of potential organ damage happening already, but nobody could see how bad it was because patients were not living long enough for it to play out. We know from Dr. Martin Lerner that ME/CFS patients have various infections in their hearts, including many that are known opportunistic infections in HIV/AIDS. So I think we can certainly conclude that the retrovirus is likely allowing these secondary infections, since they are so varied, and treating them aggressively to prevent heart damage might be wise. Some of us have known heart damage. I have had a secondary bartonella infection for almost six years that became highly opportunistic and almost killed me. Bartonella is linked to cardiac deaths in AIDS patients as well as AIDS dementia complex. And personally, if I don't take toxic bartonella drugs constantly now, I relapse significantly.
Most likely if I treated the retrovirus, I could in time go off of the bartonella drugs, and the antibiotics I'm on for secondary Lyme. But as long as I have a non-functioning immune system, these secondary infections are out of control. So it's a toss-up: do I take liver-toxic Rifampin, which requires ongoing liver testing, which already elevated my liver enzymes once, until I just burn out my liver? Or do I treat the underlying cause, which is likely the retrovirus?
I did not have the phenomenon of opportunistic infections, except for things like candida, until my ME/CFS was very progressed -- but candida alone is a sign in HIV that it is progressing to AIDS. So even secondary signs like that in ME/CFS can't really be taken lightly.
Many of the cognitive problems ME/CFS patients have, if seen in AIDS patients, would be considered precursors to AIDS dementia complex and aggressive therapy with ART drugs would be indicated. These can be symptoms as simple as slowed thinking, which many of us have.
My greatest concern is possible mitochondrial toxicity. Does anyone know about the three potential drugs for XMRV and their mito toxicity profile?
Also, I read that low dose naltrexone might help mitigate some of the dangers/side effects of AIDS drugs, so taking it simultaneously might be a good call. I also read one study about zinc and N-acetyl cysteine being helpful against ART drug toxicity.
I'm not completely sold on the notion that ART drugs are worse than other drugs ME/CFS patients are routinely prescribed. Klonopin lands many non-ME/CFS patients in detox facilities. Antibiotics destroy gut bacteria. Drugs like Valcyte are liver-toxic. Doxepin and other tricyclics which docs used to give out regularly for ME/CFS sleep disorders have cardiac dangers. Yes, many AIDS patients went on HAART therapy because otherwise they had a death sentence. But according to Dr. Leonard Jason's ME/CFS "death" study, and the small studies on cancer in ME/CFS, the chance of dying as much as 25 years earlier from ME/CFS is a real possibility. And many AIDS patients have lived healthy lives for a long time on HAART drugs now. Maybe for a 20-year old, the risk would not be worth it. For someone with life-threatening symptoms and near-death episodes from ME/CFS, the risk seems potentially more worth it. It's not just about patience, but about the physical damage XMRV is already doing, via secondary infections, etc.