So here we are… a little more than two months into our “clinical trial”, N=2, of antiretroviral treatment for X+ cultures from VIP Dx. Anything that I mention about any more people than us came to me from email or hearsay, good sources though they may be.
I started AZT alone and added raltegravir a week later. I experienced a significant reduction in malaise after a few weeks. At about six weeks, I had a surge of energy and reduction of many odious symptoms that I consider to be vasospastic in nature, as well as a reduction in air hunger which has been ever present for a long time. I tried to add tenofovir at eight weeks, probably because I felt that I had plateaued. Also that someone had to try it, and I don’t feel particularly afraid of the drugs after where I’ve been. I took tenofovir for five days. From the third day on I experienced escalating neurological symptoms, so discontinued it. At the same time I received a couple of reports of people who had started raltegravir alone and became suddenly worse.
My daughter started treatment a week after I did. She waited to see whether I was going to keel over right away:). I am not comfortable reporting about her except in the most general way. It is too much of an invasion of privacy. However, she also experienced a surge of energy at about six weeks into treatment, then an upsurge of symptoms I consider to be inflammatory and returned to about baseline. Since her inflammatory symptoms were continuing, she decided to stop raltegravir at the same time I did.
We both stopped raltegravir for five days and both experienced an almost immediate worsening of symptoms, in my case all associated with vasospasm, in her case receptor insensitivity (hypoglycemic episodes), both worse than baseline. So a rebound…
We both went back on raltegravir and those symptoms improved again very quickly, about a day. My daughter had four episodes in five days off raltegravir and has had one little one in almost two weeks back on. She started tenofovir five days ago and has so far had no problem with it. Her inflammatory symptoms persist, as do my neurological ones, but it’s not even close to where we’ve been before. I continue to experience much less malaise than before starting. My energy is more potential than kinetic at the moment:), but sitting here writing this, I don’t feel that sick.
My feeling is that if I were starting now, I would probably start with AZT and tenofovir, wait a while and then try to add raltegravir. Raltegravir may turn out to be not the right drug. But for the moment, it’s what we have. And nothing has ever dragged my illness around like raltegravir. I find that completely encouraging for the long haul. I would also like to make clear that the adverse experiences that we have had are not consistent with the very well known direct toxic effects of the drugs. I have heard a few reports of people who have tried AZT/raltegravir in combination and the response is mixed, but it doesn’t seem that anyone has lost much for trying it so far. And it’s not no response, which would actually be the worst response.
My best guess is that AZT alone is not a good enough inhibitor of reverse transcriptase in crucial tissue reservoirs. When raltegravir is added there is potential for it to be too potent. There may be a build-up of unintegrated viral DNA. When the drug was stopped it allowed viral integration and invasion of new cells. X uses XPR1 receptors, present on every cell in the body, to invade new cells. XPR1 binding damage may be involved with disease expression. My daughter’s most trackable symptom is hypoglycemia related to insulin insensitivity. Mine are vasospastic events in various organ systems. My guess is that they are ANS mediated. It may be due to affected enervation of distal blood vessels on the arterial side. Or it may be that there is a viral reservoir in smooth muscle or endothelial cells, vasospasm perhaps mediated by the direct effect of released inflammatory cytokines. Either fits with the episodic nature of the events.
I am being contacted by people who are considering testing for X or starting treatment. It is obviously a self-selected group. But there is one commonality. All are well along on their long, sad journeys and are completely willing to be part of the experiment, hoping that others may benefit, especially all the young people who haven’t had a chance at life yet. Maybe it’s fitting that this is how it is happening given the decades of neglect. We’ll figure it out for ourselves. Some of us simply don’t have the time to wait.