OK. As I said I was diagnosed about 8 years ago. Before that time, I was very active in volunteer work as a "Buddy" for people with AIDS, not only to help people out but I wanted to learn as much as I could about the disease, treatments, and how it all affected people. I went from many years of that kind of volunteer work into activism where I learned about everything from a different point of view. All this time I was getting tested regularly, at least once a year.
At one point I got really sick, like the worst case of the flu you can imagine. Very high fever, vomiting, the runs, rashes. I could barely get out of bed for about a week. I went to the doctor, your run of the mill family practitioner. Did all kinds of tests, he was stumped. Did a HIV test, came back negative. Finally diagnosed me with Scarlet Fever. Yes, Scarlet Fever.
A year later, got another test, came back positive. So much for Scarlet Fever. This, I believe, was actually my infection with HIV. The test came back negative because I was not producing antibodies yet, which is what the test looked for, not for the virus itself. At the time, that was the standard.
Initially, I was kind of shocked but not really devastated. I think because I was armed with a lot of knowledge before hand, there was much less fear. I changed docs and went to who I felt was the best in the city at the time based on everything I knew from all my past experiences. I also had for a short time a really weird calmness - like some sort of enlightment - like life just made sense all of a sudden. I've read about others that have described the same feeling. It didn't last, I wish it had.
My first tests, prior to treatment, were not very bad. Low viral load, low end of the normal tcell range. The theory at that time, was "hit early, hit hard". I was put on a two drug regimen and then added a third a little later. None were protease inhibitors - they were new on the market.
Almost immediately my viral load went to undetectable and my cell numbers shot up to the high end of normal. The doc on several occassions told me he believed he was going to be able to "clear the virus" and I would live happily ever after. Again, standard thiniking at the time.
Almost immediately, I felt sick as a dog. Wanted to vomit all the time, not want to eat, felt weak, very tired. It was what I imagined chemo was like. But I stuck with it, the test numbers were great, my quality of life sucked. I was put on Zofran, a drug given to those on chemo to help with nausea. Sometimes it helped, sometimes it didn't. Over time, I became anemic and was treated with Procrit, which also sometimes worked sometimes didn't.
Over the next couple of years there was a slow change in the thinking and in the activist community, many were raising the issue of the treatment in some cases being more harmful than the disease. I did my home work and decided I wanted to look at alternatives. I was going on year three of good results, feeling like shit. I found a research study that offered the opportunity to come off the meds in a very controlled setting. In return, you took another, less harmful drug that was thought to help prime the immune system. Also started to follow a regimen of mega vitamins, minerals, other supplements that was outlined in a book called "Healing HIV".
I came off the meds and immediately felt better. I was subjected to blood test three times a week for a while, then twice a week, then once a week. My test resluts were very stable over the course of the three years in the study. A low end viral load and high end of normal tcell range. Year two into the study they took me off the other drug. There was no change in the numbers. I was released from the study and have continued to remain off the meds with no change in the test levels. I'm off meds 5 years now, going on year six.
The take aways for those of you interested:
Learn as much as you can, from many different sources and points of view, you never know if you, your friends or someone in your family will need to know.
Test regularly, whether or not you think it could happen to you, I never thought it would.
If you get a really nasty flu like illness, don't let them tell you it's Scarlet fever or some other rare disease. Ask to be tested for the virus, not the anitodies to the virus, but the virus. To be sure, get another test a few weeks later.
If you test positive, take control of your care. Question everybody and everything, especially your doctors. Most doctors do not have the time to keep up with the latest research. You need to do it for them.
Everyone is different, the virus and/or the meds may affect you differently. I have friends who wouldn't think of going without meds for a minute. That's okay, many of them were truly brought back to life with these meds. Some newly diagnosed are much to fearful of having any measurable virus in their blood. That's okay for them too. Make your own choice.
I never once thought from the very beginning that this virus was going to kill me, I still don't. It's something I live with, we have an understanding, this bug and me. It's a stand off at this point. Who knows what time will bring -new approaches, vaccines, eradication, I plan to be here to find out.
So that how it feels, for me, to live with HIV.
Which brings me here now. My new adventure into AAS "therapy". The older I get and the more my body fights this thing on its own, the more help I find I need to keep the energy up and the body in shape. Part vanity sure, part reality yes. A friend, not HIV+, but a competitive bb, enlightened me to the benefits and pointed me to Medibolics and other research. I'm completing my first cycle and feel like a million bucks for the first time in a long time. I get my first blood test results end of the week. Most anxious about any affects from AAS. Keeping my fingers crossed.
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