Treatment Review #16; January 1995

I have had HIV since 1981. I picked it up from a blood transfusion following a collapsed lung. I know I wouldn't be alive today if it weren't for my determination in directing my own treatment, and my computer for staying on top of things. My T4 cell count is probably around 25 by now, and up until this point I haven't had any major opportunistic infections. I started actively treating my situation about 5 years ago when I found out I was HIV+. Used straight AZT. Was having the runs and no energy. Laying in bed most of the day. Tried levamisol and it cleared up the runs. My count kept dropping and I began to feel after a while that the AZT wasn't really working. I asked my doctor to get me on the ddI trial. He was against it, thinking it caused irreversible neuropathy. I began losing weight and feeling bad.

At my insistence, the doctor reluctantly agreed to put me on ddI. What a big difference. I immediately began to feel better, my weight and energy came back. But after a few months, the neuropathy began to set in, and continued even though I reduced the doses by half. Then I read about the trial results combining ddC with AZT. ddC was available at the buyer's clubs at that time, so I got some and started the combination. That combo worked great for me for years. When my count dropped below 200, my doctor gave me a prescription for aerosolized pentamidine for PCP prevention. I had read that some people felt that pentamadine had caused lung problems in certain individuals. Since I had a collapsed lung earlier, and had a history of asthma, I was hesitant about the use of pentamidine, and delayed using it. Then I read early information indicating that 3 Septra tablets per week was working at least as well as pentamidine, and had the additional benefit of keeping other bugs away from other parts of the body besides the lungs. I started the Septra, never had PCP, and discovered that some peculiar lumps and bumps disappeared when I began taking the Septra.

I also became convinced from what I read of the benefits of taking 800 mg of Zovirax daily, and added that to my daily regimen. For years the combination of AZT/ddC, Zovirax, Septra, and occasional Levamisole kept me feeling fine. Then every once in a while I began feeling tired again, and was getting cramps in my left leg, and I had a tendency to drag it when I walked. I had read about the use of Trental which was thought to be good for PWA's because it supposedly reduced TNF in the blood. I began taking 3 Trentals a day, along with the AZT/ddC combination, and after just 3 or 4 days, I began to feel better again - no leg cramps and more energy. This seemed to work fine, and I would only take the Trental when it seemed necessary.

About 6 months ago I learned that many people were doing very well on d4T, and decided to replace the AZT/ddC/Trental combo with the d4T. d4T made me very hyper and, although I had plenty of energy and was never tired, I began slowly losing weight, and then eventually began to get very tired. I think the d4T affected my whole metabolism, and that I always felt like my whole system was speeded up. I felt like I was tired not due to malabsorption or any intestinal problem, but because my muscles were wasting away so much. I went off the d4T and back to the AZT/ddC/Trental combo, but saw no improvement after a month.

Then I got to thinking that I had read where high TNF levels were thought to cause metabolic changes and wasting. The NY buyers club told me about a German drug, Ketotofin, that was approved over there as an antihistamine, but that was also proven to lower TNF levels in PWA's. Ketotofin also has the additional side-benefit of having high activity in the skin, and helps with itching, etc. I began taking Ketotofin a few months ago.

I also began lifting weights in an effort to increase my lean body-mass. The difference has been simply unbelievable. I am gaining weight - not fat, but muscle. I have tremendous energy, except after strenuous work-outs, feel less hyper etc. I'm 52 and always have been in pretty good shape, swimming and windsurfing up until a couple of years ago, but I was so tired and weak a couple of months ago, that I really didn't think my body would respond to weight training. But it has, to a degree greater than I hoped for. I take a high-protein supplement called Met-Rx ( 3 times the amount of protein than in Ensure at about the same price) along with my weight program. I work out 3 times a week, 1 1/2 hours at a time. I thought I was going to die after my first few workouts, even though I tried to take it easy because of the heart etc.

So here I am, 52, HIV+ since '81, weight training, and actually feeling at least as good as I've ever felt in the past 15 years. The next thing I'm trying to do is get ahold of 3TC. The combination with AZT seems to work far better than anything else to date. I think what I've learned through all of this is the great importance of staying on top of new developments in the field myself and never to place the responsibility for my care totally and blindly in the hands of a doctor. Most everything that really worked for me was not something initiated by a doctor, but by my own knowledge learned by research, and by continually trying new things when old treatments weren't working. I knew too many people who are no longer alive, who did nothing more than AZT and pentamidine until the fatal opportunistic infections set in. I would see them failing little by little, and suggested other treatments besides AZT. They never did, always feeling that the "Doctor knows best, I'll leave it in his hands." All of the PWA's I've known with that attitude are gone. I find some of my best sources of knowledge to be the following:

1. Aids Treatment News, which I get with my computer and modem, and save. I've got all the issues going back a couple of years on computer, so it makes it easy to use a word processing program to go back and search on any particular topic, like "wasting," etc. All of these back issues can be conveniently downloaded from computer server called AEGIS.

2. By calling the buyer's clubs in New York, Atlanta, etc., and just asking what's new and what's working?

3. I keep a folder on Compuserve, another computer service, using the key word "AIDS" so that all the news articles containing the word AIDS are saved for me, and every once in a while I pick up a lead that points to a new direction. I started off just writing you to let you know that yes, there is someone else out there who has been HIV+ for at least 13 years, and things got sort of lengthy. I just figured that maybe I, and probably you, have been doing something right that perhaps could help someone else for the better. Let me know what you've been doing to stay alive all these years. One other thing I forgot to mention - meditation has had a dramatic affect on allowing me to concentrate, relax, and deal with stressful situations.

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