Since my last post, several people have written to say that I sounded discouraged. I don’t feel discouraged. I feel realistic. It’s too bad that it didn’t turn out to be a fairy tale, but I really didn’t expect it to. We are improved. Relief is relief. For now, I’m thrilled to have a finger in the dyke.
I didn’t report more specifically about responses to treatment other than ours, because the information available to me is spotty and some of it is hearsay. It is really only fair for me to talk about us. But since I did attempt to summarize very generally, I would like to add that when I said that some people on treatment aren’t better, length of time since starting is variable as is the choice of drugs. When I said people hadn’t tolerated the drugs, I was talking about very abortive attempts to get started. Also these people haven’t given up. False starts are to be expected under the circumstances. It was my intention to report only in the most general terms, in an attempt to give an impression of what it is like to get started. It’s ridiculous that we all have to try to figure it out this way. We need a real clinical study!
So I’m not discouraged. I’m angry. My disappointment in my colleagues is profound, with pathetically few exceptions. People write to me asking if they should go to this one or that one, try this protocol or that. To the doctors I say: It’s the virus stupid. You’re not going to stop a retrovirus with the wrong antivirals, ever more sophisticated combinations of antibiotics or any amount of supplements. I understand the reasons why it became this way, but I don’t understand any longer.
We’ve been given the answer and almost nobody is running with it. Why are these doctors still telling their patients that it’s better for them to adhere to the same old half-baked ideas that haven’t worked than try specific treatment for what they have? Better to keep their captive audience. If these drugs work, patients will be able to be treated through normal channels. They won’t have to travel and spend ridiculous amounts of money on uncovered treatments that are often worthless or dangerous. I’ve never seen a group of people so invested in their own ideas as the doctors caring for these patients. It’s like they’ve been in the dark so long, they can’t stand the light.
Why has mainstream medicine abandoned us? It’s because of doctor discomfort with not knowing what to do with a patient that doesn’t fit. Easier to blame the patient. Also the disease makes the patients “crazy”, but still smart enough to read, thus knowing more than the doctors. All worsened by the insurance companies practicing medicine, the loss of the doctor-patient relationship which is essential to the treatment of chronic illness and, of course, the government not doing its job to inform the doctors of what they should have known long ago.
To my colleagues: You are sleeping with the enemy. Here’s your chance to be a hero. There are still people out there who believe that HIV doesn’t cause AIDS. What are you planning to do? Wait for the government to tell you the obvious? Wait for the insurance companies to tell you it’s a good idea to treat? Some of us will be dead by then. Get a clue and help your patients!