Just Point Me in the Right Direction
I've always been healthy. I thought hospitals were places to visit other people and was convinced that doctors were merely human. I did not know the difference between vitamins, minerals, enzymes and amino acids; nor did I care. I didn't need dietary supplements. I took my good health for granted. I once said that if I were a diabetic and needed to give myself a shot, I'd die first. When it came to needles, I was Chicken Big. I had a very strong belief that only foods should be sent down the esophageal slide. I wouldn't even take an aspirin.
In November of 1991, the day after Magic Johnson had announced his HIV status, I got a phone call from a friend in LA asking if I knew that my ex-boyfriend was dying. I assumed he had a brain tumor, judging from his behavior at the time I had left the relationship. My friend told me the truth: "Rick has AIDS." How could this be? I had asked about his health status. Rick had told me he was "clean." I had gotten tested. I knew I was negative. This could not be.
But the next day I got an HIV test -- positive. I had no job. I had no insurance. I was scared. Very scared. I began reading and calculating. Calculating how much time I could expect to live.
I immediately entered an early intervention program. I learned that my CD4 cells were 900. Six months later, they had dropped to 500. I'm not altruistic, but I thought that being in a clinical trial might help advance medical science. So in June of 1992, I enrolled in ACTG 175, an early trial to evaluate the benefits of taking two drugs compared to one. The drugs involved were AZT, ddI and ddC and, since this was a double-blind, placebo-controlled trial, I didn't know which drug or drugs I was on. Four months later, I was in a hospital bed with a dangerously low hemoglobin level of 3.8. It was clear that I was on AZT, a drug known to have anemia as a side effect. I was given five units of blood and my AZT dose was cut from 600 to 300 mg per day. On my way home from the hospital the next day, I stopped at the library to read about hemoglobin and what may stimulate the immune system. If I was going to survive this virus, I had to learn what made my body tick.
I remained in the 175 trial for two years, but my blood work continued to decline. My CD4 cells dropped to 300. I had no energy, so I began looking for alternative therapies, and in 1994 I quit the trial, quit the AZT and began IV ozone therapy. The theory was that the virus could be killed if exposed to enough oxygen in the blood. After treatment, my energy level rocketed, but my blood work did not improve much. I learned about Kombucha tea for detoxification of the body. I began drinking a quart a day. It gave me energy, and I remained free of opportunistic infections even though my blood work still did not improve. I stayed off all medications for two years.
In April 1995, I entered a thymopentin trial. Maybe the stuff would help my thymus make more T-cells. This required injections three times a week with an insulin needle. Since it was a blinded trial, I had my product analyzed to determine if it was the real thing. It was. So I bit the bullet and learned to poke holes in my body. It was later determined that this product showed no promise. My CD4 cells dropped more; I had crawled under the 200 mark, so my disease changed its name from HIV to AIDS.
By late 1996, HAART was available. I was basically "drug naïve" (having only taken AZT) and hoped that "the cocktail" would be my salvation. I began triple therapy with Crixivan, Videx, and Epivir in late 1996. My blood work changed little, although my viral load was below detection. So when ACTG 328 opened in April of 1997 to study IL-2, I was the first enrollee. The trial had three arms. Two would get IL-2 (high or low dose) and the third was the "observation" arm -- HAART with no IL-2. Unfortunately, I was assigned to the observation arm, taking Crixivan, Videx and Zerit. I began having body changes almost immediately. First my little breasts began a race to catch up with Dolly Parton's. My arms and legs became veiny. The fat left my limbs as rapidly as my belly grew. As time went on, I called this the Tuskegee arm. Sure, I had given "informed consent," but in the observational arm, I would only be "observed." What if I couldn't last long enough for the trial to be opened up for everyone to get IL-2? I felt like I was sitting on a powder keg, waiting for any bug to wipe me out. I was taking tons of nutritional supplements.
I began to have terrible pains in my feet and lower legs. I had headaches that were vice-like. I was going days on end without any sleep. I figured it was the toxins from the drugs. I added herbal tinctures, detox tea and increased antioxidants to my daily protocol. Someone made me a second generation Hulda Clark electrical zapper to destroy parasites. By holding negative and positive rods, a small electrical charge circulates through the body. I figured that if a big jolt would kill the host, it stood to reason that a smaller jolt would kill unwanted poachers. I had to do something before it was too late. I didn't want the next memorial service to be mine.
I talked to my doctor and he agreed that if IL-2 would help me, I needed it soon. I asked him point blank about the part of the Hippocratic oath that talks about "doing no harm." I think "observing" disease progression in someone qualifies as harm when something really might help. This was not acne, it was my LIFE. It should be my decision. I asked him, "Whose side are you on? The AMA's or mine? Am I going to stay alive in spite of you or are you going to help me?" I remember telling him that he should do nothing to jeopardize his medical license, but damn it, "I'm a smart cookie; point me in the right direction and I'll get the IL-2 myself."
It was July 1998 when I began injections of high dose IL-2 twice a day. Whatever you have heard about IL-2 side effects is true -- I actually asked a friend to stop by after she finished work each day to see if I was still alive. I did nine cycles, one every eight weeks. By the third cycle, I had figured out ways to mitigate and/or resolve the side effects. I used everything from Kombucha tea, ginger and high dose antioxidants to Reiki and yoga. The final cycle was in late September 1999. My CD4 had increased to 475 over 18 months. I treated myself with a cruise.
At this point, I had been on medications for four years. Being an accountant, I figured that drug dosing should be based on weight. I eventually cut my dose in half. The night pains in my legs, ankles and feet often reached 15 on a 10-point scale. Worse than the pain was my appearance. My legs had lost all their fat and what were once poster quality gams were now veiny twigs. My pencil arms protruded from a reformatted torso. My face became more and more sunken. The facial fat had disappeared so much that a scary mask for Halloween was not needed. One man told me that my face "repulsed" him. How nice! I may be able to live for years looking like a freak.
Studies indicated that Crixivan and Zerit might accelerate lipodystrophy and lipoatrophy, so in January of 2000 I switched from Zerit to Ziagen. Nothing changed. I heard about a small study of people doing treatment cycles -- 7 days on and 7 days off. Sounded good to me. What the heck, it would reduce drug toxicity and maybe slow down whatever was destroying my body. I started slowly, taking a week off every two to three weeks. This reduced the leg pains by half. A year later, I replaced Crixivan with Viread and, with my doctor's approval, began 7 days on and 7 days off, which I'm still doing.
The leg pains got a little better. But the reduction in medications did nothing to reverse the facial atrophy. Believe me, looking like a corpse does nothing to brighten one's spirits. I began researching facial restoration, and nearly got NewFill, but wanted something that would not require constant touch-up. Plus my face was beyond what NewFill could handle. So in December of 2001, I began facial restoration with an Italian product called Bio-Alcamid. If someone had told me 20 years ago that I would pay to have someone stick needles in my face, what do you think I'd have said? I have one more session. In the words of my friend Mike who had the same procedure, "It's the best gift I've ever given myself."
My CD4 cells jumped to 888 -- 1,000, here I come. My goal now is to find the right combination of immune stimulants and nutrients so that I can get off medications completely. I think medications are for acute care, but long-term healing needs to come from within. When I brush my teeth, I don't know who I see in the mirror anymore. Inside and out, different person. But life goes on. I plan on mine going on for years and years. And I hope that as my tomorrows get better, my yesterdays will turn into nothing more than a bad dream.
Ellen Hahn lives in Houston and volunteers at the Houston Buyers Club, which provides low cost supplements and nutritional information. She also serves as Treasurer on the Board of Directors of Montrose Clinic. If Texas had mountains, she'd be skiing.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.