AIDS Community Research Initiative of America (ACRIA) - Summer 2003
Nancy Soto

The city was decorated with holiday glitter. Everywhere you looked there were people smiling and festivities in the air. Christmas was three days away, and I was given the worst news anyone could ever hear. "You are HIV-positive." The words echoed in my head as I left the doctor's office and proceeded back to work to hold the annual holiday party. I was the manager; everyone relied on me to organize the party and mingle with our vendors. I felt like I was having an out of body experience.

It had been almost a year of continuous doctor visits, trying to figure out what was causing my fatigue. I'm a runner. I love to run. When I was healthy, I could run ten miles a day and not feel a thing. But in 1996, I had to muster all my strength just to stay awake. Since I was diagnosed at the end of the year, I wasn't able to start HAART immediately. I only had catastrophic insurance with no prescription plan. I was living a nightmare!!! The cost of the medication was stupendous. My husband was able to apply for insurance coverage through his employer. So on January 13, 1997, I began my treatment. I remember this like it was yesterday, and I am now in my sixth year on treatment. My regimen of Viracept, Epivir, and Zerit worked like magic. My energy slowly returned. My hair loss stopped. The coughing that began when I first started the meds improved. Apparently I was very ill when I was diagnosed, and my doctor felt the prognosis was not good. My CD4 count was 2 and my viral load was in the millions. I chose not to know the details at the time. I wanted to be able to focus on the positive and heal. I had an excellent support system in my immediate family. My mother came in to care for me and provide nutritional meals as only a mom can do.

Years went by and I completely recovered. I was able to resume running. Now I ran to eliminate the toxins from my body. I envisioned all these little viral bugs leaving my body in the form of perspiration. During the first years of my diagnosis, I did whatever the doctor advised without questioning his reasons. I felt that this man had given me back my life. I would go to my appointments and never - not once - did I receive my results. The doctor knew to call my husband or mother with the results. I felt that knowing how sick I was would hinder my physical and mental healing. All I wanted to do was heal.

By 2001, the middle of my fourth year, I felt I needed to know more - my counts, my prognosis, side effects, where I was when I was diagnosed, and where I was now. I was ready to learn. I dove into books, read periodicals, went on line, and absorbed everything I could about this disease that was consuming my body. In December of that year, I decided I needed a drug holiday. Everything I read indicated the potential for toxicity, liver damage and resistance the longer I stayed on the meds. I met all the criteria that indicated I had a strong immune system and I was strong! My viral load had been undetectable for two years and my CD4 count was at 800. I was running ten miles a day and lifting weights. My body was in better health than it ever had been in my 37 years.

My doctor advised against stopping the meds. After numerous office visits and lengthy discussions, I was finally able to convince him. I needed his support! He told me I could stop as long as I knew how he felt about it. I was so excited. I looked forward to a life with no pill consumption. No reminders of my illness. Just to be normal again. I know now that it was an attempt to recapture my life before HIV. I believed that once I stopped my meds, I would discover that I was cured, that my own immune system would resume working, and the virus would be completely gone. My body would be mine once again.

I stopped my cocktail on January 1, 2002. A month later, I was in my doctor's office again, a mere shell of the person I was before my holiday. All the literature I had read hadn't prepared me for the reality of the decision. Immediately after I stopped, I experienced severe aches in my bones, night sweats, chills, fever, loss of appetite and terrible fatigue. I could no longer run. By five o'clock each day I was exhausted. I was no longer able to care for my children. For the first two weeks, I kept telling myself these are just withdrawal symptoms. My body had taken these pills for so long, how could I not be experiencing withdrawal? By the fourth week I had missed nine days of work and was barely able to move.

My blood tests in February showed my CD4 cells to be 99 and my viral load was no longer undetectable. I believe it was around 500,000, but I can't say for sure because I was in such disbelief. As I stared at my doctor, I could see the worry in his eyes. He handed my husband four prescriptions - my HAART regimen and Bactrim. My CD4 count was so low that I was in danger of developing PCP. While I had been positive for four years, I had never had an opportunistic infection. And now I was in danger. I had put myself in this dangerous position. I had read all those wonderful articles and I was certain my body would respond favorably. But it didn't. I was devastated. My body had betrayed me. I couldn't get sick - I needed to get better for my children. I promised God and myself that if I got better I would never go against the advice of my doctor again.

My recuperation wasn't easy. My body reacted differently to my medications this time even though I resumed the same treatment. My doctor advised me that I didn't have time to try a new regimen; I had to go with what worked for me. Thankfully, every month when I went for my check-ups, my CD4 count had increased - some months a 100 at a time, sometimes more. Occasionally, when I caught a bug from my four year old, there would be no increase. I was able to get my CD4 count to 700, my viral load has been undetectable for 14 months now, and my life is back to normal. I've faced some obstacles along the way. My girlish figure is gone - I have lipodystrophy around my mid-section and peripheral wasting. My short-term memory is fading. I developed tumors in my uterus. My face is sunken in, and my cholesterol is very high. With the exception of a thin face, these are all new since my holiday.

Today I think a lot about changing my meds. I have taken them for six years. I am afraid of long-term toxicities and resistance - none of which are present. But when I think back to how ill I became I get scared. Scared that I won't bounce back, scared that resistance might occur. I have been told that my virus is a clean one; I show no resistance to any medication. So I probably won't change. I'll stay with what has proven effective, and I'll remain grateful for their existence. My advice to anyone contemplating a holiday is to do research and find out about how many individuals have tried and failed. It is a gamble we don't need to take. Life with HIV is challenging, but it is life. And everyday I am grateful that I'm here to enjoy it.

Nancy Soto lives in Wayne, New Jersey with her two children and husband.

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