Life After HIV
Personal Surival Stories
The stories on this page are excerpted from the fourth edition of "What If Everything You Thought You Knew About AIDS Was Wrong?"
They are part of a collection of accounts from healthy, HIV positive men, women and children whose lives defy all that we have been taught to believe about AIDS.
" I tested positive for HIV over Memorial Day weekend 1986. I believe I was infected two years prior to that, so I have been 'living with HIV' for at least 15 years. Four years ago, a.k.a. the ninth year of my death sentence, I finally allowed myself to recognize an undeniable fact of my own life. Without any medical intervention, including 'antiretroviral' medication, I was neither a) sick nor b) dead.
" My path has taken me from a firm belief that HIV causes AIDS, to
believing the immune system could be enhanced with nontoxic alternatives to antiretrovirals, to questioning whether HIV causes AIDS. This progression in thinking about HIV/AIDS is a direct result of my own personal experience. I understand that the notion that HIV might not cause AIDS is upsetting for many. I'm not raising the question merely to be provocative. The possibility that a horrendous mistake has been made is disturbing to me.
" What's really ironic is that my story is a positive one though I'm almost ashamed to admit it. Is it the last taboo: discussing your non-death from AIDS? But I can't resist, I have to say it. These past four years, once I learned to let go of the fear, have been the most positive, life-affirming years of my life.
" As they say at Alive & Well: 'Relax, it's only information.' There is another side to the HIV/AIDS story. I think everybody with HIV or AIDS should be allowed to hear about it and make an informed decision for him or herself. A little free speech, open debate, and civil discourse never hurt anybody. To all doubters, I say take a deep breath, open your mind, and read."
David Fink, San Francisco, CA
"I've been HIV positive for 16 years. I'm a writer and performer, and in my work I emphasize survival and self-determination over the usual death and medical dependency associated with HIV. It's not like I want to second-guess the medical profession, but I have to go with what I know in my heart.
" In the fall of 1996, I came down with PCP pneumonia, one of the hallmark AIDS diseases. I was scared and this was when the cocktails first started coming out, so I decided to try them. I also took drugs for the PCP but when it cleared up, I stopped and just stayed on the cocktail.
" All my numbers were great. My T cells were up, and my viral load was down. But I felt awful. Here I was, a vegetarian who never even took aspirin, and all of a sudden I'm on all these powerful drugs. I had to take pills three or four times a day, some with meals, some without. My whole life revolved around drugs. I was all bloated and kept breaking out into rashes. I had to keep getting up through the night and go to the bathroom, so I was always exhausted. I had horrible neuropathy in my feet to the point where I could hardly walk. I felt my body falling apart, not from HIV, but from the drugs. I was always very aware of my body, and I could feel that I was putting poison into it.
" I finally went to my doctors and told them I didn't want to take the drugs anymore, and they called me a fool. They were very dramatic and told me it was suicide to stop. So instead of stopping, I went on a new combination of drugs. My speech was slurred and I kept losing my equilibrium. When I fell down a flight of stairs at my house, that was the last straw. I just stopped taking them. My T cells went down and my viral load went up, but I felt healthy again. Two years after quitting the treatment, I feel better than ever."
Steven Goldring, Cleveland, OH
" In 1989, when I was 21 years old, I went to the local health department for a pregnancy test. They asked me if they should include an HIV test, and I agreed. About two weeks later, I got a call at work from a health department employee who told me my pregnancy test was negative, but my HIV test was indeterminate, and that I had to test again. A few days after I took a second test, the health department called and said I had to come back in, but this time I couldn't get any information over the phone. Once I was there, I was told that I had tested HIV positive.
"All I remember of that two hour appointment is this counselor drawing circles on a paper. He drew a circle to represent an immune cell and explained that HIV made the circle explode, unleashing all these other little circles of HIV that would infect other immune cells and make those explode. I left the health department in hysterics and called my parents. I went home and told my boyfriend that I had tested positive. He accused me of giving him AIDS.
" I figured I had two years to live at the most. I based this on the famous AIDS victim Kimberly Bergalis, a healthy young woman who lived just two years after testing HIV positive, and my own history of poor health. When I was 13 years old, I was diagnosed with Rheumatoid Arthritis
. When I was 18, I started having stomach problems. After many doctor visits and medications, I had surgery to remove my appendix and a few inches
of my colon. After that, I was diagnosed with Crohn's disease, an incurable intestinal disorder. I was told this disease would compromise my immune system and give me constant stomach pain for the rest of my life. During the next two years, I came down with mononucleosis, chicken pox, stomach ulcers, and chronic fatigue.
" By the time I tested positive, I was already frustrated with the medical treatments I had been on for Crohn's disease and the doctors were pushing me to take steroids, which I was unwilling to do. Instead, I found a book on Crohn's from a health food store and started on an alternative plan. I began taking acidophilus for my stomach and went through a detoxification using blue-green algae. At the same time as the detox, I began to focus on strengthening my immune system, knowing intuitively that this was the way to go. For five years, I made slow but certain progress with my health using a wide range of herbs, vitamins and minerals. For the past three years, despite my dismal medical history and my positive HIV diagnosis, I have wonderful, vibrant energy which makes me feel so fortunate. I have had no stomach pain for about five years. Interestingly, my T cell counts have never varied in sickness and in health, they are always about 700.
" In 1998, I had an unexpected blessing. I discovered I was pregnant with twins. I found an excellent doctor at a well-known hospital who I thought would help me find the best way to ensure the health of my children. Instead, he said he was unable to advise me about HIV, and sent me to what he described as one of the best HIV specialists in the country. This turned out to be a run-down, dirty hospital where social workers kept me waiting in lines for hours. A social worker gave me coverage for medication costs and told me that I should start medication right away, before I had even seen a doctor or had a viral load test. I walked out completely frustrated.
" In the fifth month of my pregnancy, my whole life changed. I learned of Christine Maggiore and the work that she was doing. She told me everything I needed to hear and followed up with articles, studies, books, videos, and other information. I lost count of all the packages she sent which I carefully read and studied. It became clear that the only way to avoid AZT and a Cesarean section was to have a midwife-assisted home birth. Ironically, after thorough research on home births, I became convinced this was the safest and most pleasing environment to birth my children.
" I had two midwives and two assistants for my home birth. There were no complications or medical interventions. At no point did I question that I had made the right choice. I carried the girls to the 40th week with a high protein nutritional program, and was active until the birth. This is unexpected in a multiple pregnancy handled by medical doctors who often recommend bed rest in the last several weeks. Together the twins weighed in at over 12 pounds. They are healthy, beautiful and gaining weight appropriately. An awesome accomplishment for a pregnancy with so much additional stress. I often wonder where we would be today if I hadn't discovered the many alternatives to the HIV=AIDS=Death views. Don't let a doctor or health officials tell you what you have to do without knowing your options. Life is so precious!"
Lynn C, Lake Tahoe, Nevada
" In May of 1998, I found out that I was pregnant with my first child. I had been seeing the same gynecologist (who is also an obstetrician) for seven years, and she always told me that I had done 'everything right.' I was twenty-nine years old, had been married for six years, took very good care of my health, and had an established career. During a monthly prenatal visit, the nurse said that they would be taking blood. Since I hate needles, I asked why. She told me that they were testing for anemia. A week later I received a frantic phone call from the doctor informing me that I had tested HIV positive. I had no idea that I had even been tested for HIV. I would have never considered myself to be 'at-risk.' "
I was immediately referred to an infectious disease doctor. He tested me again and the result came back positive. He also tested my husband who was inexplicably positive. Although a thorough physical examination failed to show any signs of ill-health we both felt fine and all our other blood tests, including T cells and viral load, did not indicate otherwise, we were both advised to begin drug therapy. I was told to take AZT for the remainder of my pregnancy while he was told to take the cocktails. Nothing seemed to add up, we have been together for many years, completely monogamous, are exceptionally healthy (my husband runs 4-5 miles a day and competes in marathons) and we have no risk factors. Although the doctors kept promising to 'fill us up with data' my husband and I felt neither comfortable nor convinced.
" These should have been the darkest days of my life, but as serendipity would have it, there was a copy of What if Everything You Thought You Knew About AIDS Was Wrong? sitting on our bookshelf that had been sent to us as a gift.
I read the book, called members of HEAL, contacted Christine Maggiore, and with their help, began an immediate plan of action that included leaving my doctor of seven years in order to elude the HIV police.
" The result of my otherwise eventless pregnancy is a healthy, happy, breastfed baby girl. I have found a holistic MD who supports our decisions, and our family leads a totally normal life. Normal except for the fear that we could have our daughter taken away from us because of the choices we've made regarding our health. Just last week, the infectious disease specialist who wanted us on the drugs called our home. Once we got the facts, we left his practice and have not seen him for more than a year. He was calling to make sure our family was receiving 'proper treatment.' I'm thankful we were able to avoid falling into a system that would have left us utterly without knowledge of our options.
" I don't know how long my husband and I have been 'HIV positive' since we met eight years ago? Before that? Since May of 1998? Nothing about our situation makes any sense. The only sense we have found is in the data that shows that most of the ideas we all have about AIDS are wrong."
Stacey Armstrong, Austin, TX
" I have been HIV positive since 1983 and decided even then that I wasn't going to let HIV get the better of me. I declined AZT treatment when it was offered early on because I'd watched so many people die while taking it. Instead, I took vitamins, ate properly and worked out.
" In 1987, my partner died and I was overwhelmed with grief. I spent the next five years fighting a serious problem with alcohol addiction. I finally decided that if I didn't get treatment I would die from the alcohol, and I didn't want to go like that.
" In 1996, the AIDS drug cocktails came out and there was such elation, almost hysteria. The new tests were great, the new drugs were great, and everybody was living longer. It was the first good thing to happen in AIDS in the last 15 years. I bought into all the glowing media reports and decided to take the drugs. For a while, I didn't have any side effects except that my cholesterol was rising. After about nine months on the treatments, I started to gain weight, but I looked thinner because my face was getting gaunt. I developed an extended belly, my cheekbones sunk in, and my arms started to waste away. The first time I'd ever felt sick since testing positive was a direct result of taking the medication.
" I got more information about the drugs through HEAL Toronto, and after speaking with Christine Maggiore, one year into the drugs, I decided to quit them. Since then, I've had no problems at all and everything in my body is back to normal. My doctor was annoyed at first, but ultimately he supported my decision. I feel great these days and haven't looked back. I don't go to the gym, but I have a dog and I walk him to the park every day. I tell myself my body is healthy and I'm going to live a long and happy life at least once a day."
Adam Shane, Toronto, Canada