We’re about the same as the last times we posted. Much better than when we started, but not quite as good as we were a month ago. It’s so hard to tell, even week to week. Month to month is more useful when thinking about what’s happened. We are not quite as functional as were at one point, but hugely more stable than even a few months ago. The descents into hell aren’t happening, but there have been no very recent great shows of physical activity.
A little discouraged and impatient, Ali and I decided to start a protease inhibitor nine days ago. Feeling that we do not have complete control of the virus, and knowing that a PI is often necessary for control of HIV, we decided that the potential benefit/cost ratio of a trial was good. The two papers to which I linked in my last post, identified amprenavir and indinavir as possible candidates. Postulating that the disease requires active replication of more than one virus, it is possible that a PI that affects MLV’s, might affect the disease process, even if X is not susceptible to it. Another involved HMRV might be. Due mostly to the difficulty of complying with indinavir, which is an every 8 hour drug that should be taken on an empty stomach, we chose Lexiva, fosamprenavir, an every 12 hour drug that can be taken with our other drugs.
As has been her modus operandi with her antiretroviral trial, Ali has had no significant difficulties with the drug. I, however, only tolerated it for a week. The effects were purely neuropsychiatric. Doesn’t happen with HIV. The drug has very little in the way of CNS effect. Two days on, two days off, six days off kilter altogether, definite cause and effect. Intriguing, but away from function, which is my goal. Still, depending upon how Ali does, I may try again at half dose, the way I did with Viread. The effect of Lexiva was not like the inflammatory flare that occurred with the other drugs. It’s very hard to describe in words, but, for me, it is more proof of concept, even if the clinical effect was not immediately acceptable. More evidence of retroviral drugs interacting with retroviruses in novel ways.
I would like to take this opportunity to say something that I think is much needed for all of us to think about. In our need to fight the prevailing medical impression that it is a somatoform disorder, the very real neuropsychiatric manifestations of the disease have been denied, even sometimes to ourselves. The brain is just an organ like any other. When it gets sick, it looks different than when the heart or gut get sick. It is much more threatening, because it touches on who we are at the deepest levels. The need to keep it private is very damaging. Goes hand in hand with the disbelief. Psychiatrists have done more damage to this group patients than almost any other specialty. My own psychiatric care was truly abysmal. Whores all to the drug companies. Paid at least in part, to witness their patients’ pain, they push drugs that are often harmful.
In some ways, I think the choice to start antiretrovirals now is an even tougher one than when we started. Early experience is that it is hard for most people to get on the drugs. There are positive signs that antiretroviral therapy will be the way the disease is treated in the future.
There are patients writing to me who are subjects in a funded clinical trial of XMRV positive patients. My understanding is that there is no antiretroviral arm in this study. It involves Valcyte I believe. While there may be a place for treating activated herpesviruses in this disease, in my opinion, at the end of the day, Valcyte, Valtrex, etc. will be after-thoughts. How pathetic that there’s a chance to study something that could actually control the underlying cause of the disease and instead money is being spent to find out again what we already know. Results I can figure out from my email. While individuals undertake antiretroviral trials on their own. Begging to be lab mice. Voluntary biological experiments, with no assurance at all of success. Forced to try the only real treatment possibility available, in a completely uncontrolled fashion. It’s an outrage.