How I’m Beating AIDS Wasting

How I’m Beating AIDS Wasting

Having AIDS-related wasting syndrome is like going to hell. If you get a chance to escape it, you’ll do whatever is necessary to avoid going back.

Unfortunately, though, it takes more than determination for a person with HIV to maintain good health. That ís a lesson I’ve learned over the last seven years. I’ve tried everything from aerobics to acupuncture to avoid wasting syndrome and other AIDS-related disorders. It is only in the last two years, with the help of my doctor and my nutrition/fitness consultant that I have achieved a healthy, if not a “normal”, life.

My battle against wasting syndrome started in 1990, almost immediately after I first tested HIV-positive. I began wasting, losing 50 pounds in a matter of weeks. To complicate the situation, I developed pneumonia and a bad case of shingles all over my body. I was so weak that I was barely cognizant of the world around me. I felt almost certain I would die.

My physician put me on anabolic steroid therapy, 200 mg testosterone and 200 mg nandrolone weekly, and I bounced back dramatically. My weight returned to normal. I had been given a fresh start, and was set on maintaining my health. In 1992, though, I developed a case of chronic peripheral neuropathy, which resulted from taking an antiretroviral.

When I recovered from the neuropathy, I started physical therapy to build up my strength and begin walking again. I used exercise machines, chiropractic adjustments, ultrasound therapy and even mild electroshock therapy. The latter consisted of having electrodes sent down the backs of my legs—from my calves to the tips of my toes—for stimulation.

Physical therapy played a huge role in my fight against neuropathy, as the prescription medications I took to control the condition gave me chronic diarrhea, and led to my needing emergency surgery for hemorrhoids in 1994.

Around that time, the ebb and flow of my health was beginning to take its toll. From 1993 to 1995, I would have a few good months on my medications, and then a few bad.

I decided to expand my health care beyond merely taking the traditional antiretrovirals.

I went to the Emperor College in Santa Monica, CA, to try a 30-day purifying technique of a strict diet and herbal regimen, with no meat or traditional medication therapy—including my AZT—allowed. The results were disastrous. By the time I dropped out of the program, I had lost 20 pounds and felt terrible.

I decided from doing my own research to investigate a complete fitness/nutrition program. Again, I went through a period of trial and error. One trainer I hired wanted me as lean as a Hollywood aerobic queen. That approach didn’t cut it; I lost too much weight. I also met with nutritionists who treated me the same as all of their other patients, not taking into account my special nutritional needs as a person with HIV. To me, that’s a waste of money.

I became convinced antiretrovirals alone weren’t going to keep me healthy, but I still didn’t have the perfect strategy. Then, in early 1996, still fighting to avoid the hell of wasting, two angels came into my life: my doctor, and my fitness/nutrition consultant. Working closely with them, I’ve gained control of my life. Every two weeks they faxed each other my lab work between them and talked on the phone about my condition. This gives me confidence and makes me feel like I’m in good hands.

My diet consists of 7,000 calories daily over the course of eight or nine meals. This is no small task. I started with five small meals a day, and gradually trained my stomach and my mind to consume, even hunger for, a whopping seven to nine daily meals.

I’ve also had to eliminate greasy foods from my diet. My body has gotten so accustomed to healthy foods that I risk a bad case of diarrhea if I have a McDonald’s burger or a Taco Bell entree loaded with cheese that’s been sitting out on the counter all day.

My workouts emphasize heavy weights instead of aerobics. I try and build muscle mass instead of trying to make myself lean. HIV consumes my fat reserves, anyway, so losing fat is the least of my concerns.

I can’t stray from my regimen—and I hope to be following it for the next 10, 20, even 40 years. I am determined not to waste away. I am determined not to look like my neighbor who died recently, or my cousin who is in the hospital seriously ill, all skin and bones. I’m determined not to die like that.

But I have more than determination on my side. I have a knowledge of exercise, nutrition and medicine, plus the help of health care professionals who monitor my status. That may not be salvation, but it’s allowing me to plan for an active life far into the future.

HIV disease Publication