Although we are clearly greatly improved, it still doesn’t feel like solid ground. We are bobbing on the surface. The underwater times are brief, but they are still there. When the illness does rear it’s ugly head, the downhill excursions have been relatively mild and not scary like they used to be. It’s been a while since I considered an intervention for either of us more invasive than herb tea and tincture of time. We haven’t been to the ER for quite a while and it doesn’t feel like the regular visits of the past are in store for us anymore. It’s a great deal, but not everything so far. I’m still searching for adjuncts to strengthen our gains. The knowledge of the underlying cause of the illness and the emerging ideas about what may be happening in terms of pathogenesis allows contemplation of new strategies.
When I first started blogging, it never occurred to me that we might not be representative of the people trying treatment or that the numbers would be so small. It may still turn out that others will respond as we have when more time has passed. It is very early days. I’ve done a lot of soul searching about what it means to give people hope when it might not work. But I think that even if these drugs don’t work, or only work partially, it’s not false hope. I do think that there’s light at the end of the tunnel, though it’s a long, dark tunnel still. The experiment with existing antiretroviral drugs moves us ahead. It puts the government on notice. It puts the drug companies on notice. It puts the ID doctors on notice. There are a phenomenal number of people who need treatment now, not in a few years. The faster that people accept causation, the fewer man-days lost in hell.
It seems so far that most CFS patients feel worse, at least for a while, when they start antiretroviral treatment. In my opinion that has nothing to do with safety of the drugs, but more with an interaction between the drugs and the virus that we don’t understand. We have no idea why people feel worse, but it is almost certainly NOT side effects of the drugs for the majority. HIV patients generally feel fine starting the same drugs. For most, the flare that occurs starting antiretrovirals seems to subside, but no one knows at this time what will happen for any individual. The patients who are writing to me who have started therapy are fully cognizant of what they are doing and why. They feel that they are participating in something bigger than they are, as do Ali and I. The knowledge that others might be helped makes it easier. They know what happens if they do nothing. They have a right to find out now if these drugs will work for them. When formal clinical trials finally start, it will still be these drugs, because that’s all there is for now.
As far as treatment of opportunistic infections is concerned, if an HIV patient gets Pneumocystis pneumonia and is treated with antibiotics, they get over it and feel fine. Does that mean that Pneumocystis is a cause of AIDS? No, the cause is still HIV. It is a silent killer. Treatment of the opportunistic infections and other issues, like low testosterone, will allow the patient to feel better. They will still end up dying if you don’t shut down HIV. This may turn out to be similar in XMRV/HGRV infected people. When their retroviral infection is controlled, treatment for their opportunistic infections, viral, bacterial, protozoan, might actually work.
If we could depend on our governmental agencies to treat this with the urgency it demands, it wouldn’t be necessary for people to experiment on their own. But as it is, some feel they have no choice. Several have written that they are not going to commit suicide yet because of the experiment. That they are going to stick around and see what happens. I submit to you that it’s not all about this protocol. If not these drugs, there will be XMRV/HGRV specific drugs in our future.