Andre L., 26
Q: “How do you mentally prepare for going on HIV meds?”
Two years ago, I tried Combivir and Sustiva for eight days but experienced horrible side effects. I asked my doctor for them because I was scared—a positive friend had nearly died because he was not being treated. I began having severe drowsiness and even suicidal thoughts, so I stopped taking them. Since my last attempt at meds, I’ve done a lot more research. Though I want to delay taking them as long as I can, I want to be prepared and comfortable when I finally begin.
In 2004, I had a health crisis. I was depressed, started partying with drugs like crystal meth and ended up with a staph infection. My skin broke out in abscesses, and I had trouble breathing. I was in the hospital for four days and was given fluids and antibiotics intravenously because the pills weren’t working. It was frightening because I’ve always feared the stigma associated with being positive and hospitalized.
Although I was very ill, my T-cell count hovered around 400, but after I got better, my T cells plummeted to red-flag levels of 281. My doctor was concerned that the infection had permanently compromised my immune system. I thought I was going to have to start HIV meds immediately—but my doctor respected my decision to see if things would improve.
After my crystal meth and party bingeing, I decided to take better care of myself. I know that working out regularly and eating healthier has helped me delay starting meds, and as long as I can help it, I plan to keep getting stronger. Thankfully, my T cells are up to 484, and my viral load is still around 90,000, but I know that at any given moment that could change and my doctor’s recommendation to start medication could happen at any time. I still fear experiencing those same side effects.
Brenda Lee Curry, 60
New York City
A: “Pursuing spirituality and community involvement helped me.”
I was 40 when I was diagnosed with HIV. At that time, doctors put pressure on HIV patients to take AZT medication. I never trusted that medication because many people were dying from it. I also didn’t think that enough research had been done to understand all the side effects, so I turned to Chinese herbs that were supposed to build the immune system without the toxicity.
For a while, the herbs worked, but I became seriously ill (for more on alternative treatments, see page 44). I was scared and angry at myself. I blamed the doctor who prescribed the herbs, but it was my body that gave up on me. I was hospitalized for three months with blood poisoning, PCP and shingles. I was in such emotional and physical pain that I wanted to commit suicide. I was screaming and praying to Jehovah. There was no choice. I began HIV medications and left the herbs alone. I was convinced that the meds were killing me and the paranoia had me running to the doctor three times a day.
When I was sick, I returned to Kingdom Hall after 16 years of being away. It was my faith that helped to prepare me spiritually and mentally to start HIV medications. I realized I couldn’t fear that the meds would reduce my quality of life; HIV and hepatitis C were already affecting me. I researched the side effects so I could make educated treatment decisions. Getting involved in the community and changing my attitude kept my mind off taking meds. Before I knew it, taking them didn’t interfere with my life.
Sure, side effects can be tough. Neuropathy makes writing my name difficult, but I still take eight pills in the morning and two at night. I take them, and I kick ass! Meds help, but it was God who saved my life.