UPDATED October 12, 2013:
The roller coaster continues. Five months after quitting the ARVs, my CD4 levels had dropped to the lowest point ever: 76, and 5.4%. I restarted boosted darunavir monotherapy.
UPDATED May 9, 2013:
I quit all HIV-related drugs on May 29, almost exactly one year after re-starting them for the third time since 1998.
UPDATED February 15, 2013:
UPDATED May 23, 2012:
This page was written several years ago and is past due for an update. What is most important to share right now is that I have decided to restart antiretroviral drugs (ARVs), effective today. I explain this difficult decision in this post titled “97”.
I am leaving this page otherwise intact, as there is nothing written here that deserves to be changed. I am immensely grateful for the the last nine years free of ARV drugs, and I do not regret any decision I have made in the past. I hope to be able to quit the drugs again, and I will continue to post about my experience.
Despite the fact that I was at or near ground zero of the “HIV” explosion in Kansas City during the 1980s and had been sexually active since puberty, for years I repeatedly tested negative on the ELISA tests. I went to the local testing site every year or so, certain the results would be “positive”… how could they not be… only to heave a sigh of relief when told I was still “negative”. Eventually I came to believe that I had discovered the elusive secret of “safe sex” and had eliminated all risks… though in hindsight, I really wasn’t being very honest about that even. It was an early lesson about one’s ability to ignore logic and rationality to embrace and believe whatever I was being told by reputable sources and experts.
My gay community and extended family were suddenly being decimated by sickness and death. Early on I had heard and read information challenging the emerging hypothesis about a virus as the cause of this disease. As a budding gay reporter, I recall asking a national leader, Martin Delaney of Project Inform, at the time about the dissident position when he spoke at a forum in KC. I was the only one to raise the issue then, and was shot down with a withering, cursory response that made it clear that no further discussion would even be tolerated. Here was one of the heroes I had come to rely on during this time of crisis, so I took my cue, and my stand on the side of orthodoxy and demanded that “the system” respond ever more quickly.
I know within a matter of weeks when I seroconverted, according to the tests. I had tested negative on August 24, 1998, a couple of months before enrolling in the first clinical trial for an experimental AIDS vaccine. During the enrollment process I was tested again on December 8, 1998 and that result was “positive”. Despite all the previous trial runs and dress rehearsals with HIV testing, I was devastated.
I immediately began ARV therapy—the “anti-AIDS” drug cocktails—using a combination of Viracept, Epivir and Zerit. Those were the days of “hit it hard, hit it early”. I already knew enough to declare that AZT would never enter my body. What I didn’t know was that two of the prescribed drugs I did take are close relatives. That was when my health began to decline dramatically.
Within a few months, even though my cd4 count went up and viral load dropped to undetectable, I was also sicker than I’d ever been before. Diarrhea, nausea, headache… the usual list. The drugs’ effects were intolerable, despite the numerous additional drugs prescribed to treat them. Fifteen months later, I told my doctor I wanted to stop the ARV drugs. She told me she “would not allow that”… because there was too much we still didn’t know about this virus to risk it. That seemed like very odd reasoning then and only more so now. There was too much we didn’t know about the drugs, too.
That was the last visit to that doctor’s office… a pattern that was to become the norm for nearly ten years, rather than the exception, until I eventually had no “primary” care doctor at all.
The notion of “drug vacations” and “intermittent treatment” were the very faintest whispers in 2000, but I was hearing them nonetheless. I even traveled to SF and consulted with Project Inform. They, like my doctor, counseled stridently against me stopping the cocktail… though after an hour or two of discussion and a review of my medical history (which showed no opportunistic infections or other HIV-associated illnesses) even they seemed to soften a bit.
I found another doctor, a HIV specialist who told me he could “give me a half-dozen reasons to stay on them and a half-dozen to quit”, let me make my own decision and offered to monitor me. I thought I’d found God! Not only was he a “specialist”, but his practice emphasized a “whole”istic approach that included nutrition, physical and mental fitness. There was even a workout gym on premises at his clinic!
The first couple of months after stopping the cocktail were quite frightening. My cd4 count dropped and the viral load measurements soared at first. Then the unexpected happened. Both numbers began to “normalize”… at least according to the AIDS hypothesis. For two years my VL averaged about 10K, and my cd4 remained at or above 400, and usually above 500. I was being tested every month.
Other health problems developed or worsened, however. My sense of balance was compromised; I complained of my head “swimming”; severe fatigue; loss of appetite… the list is a long one.
One of the earliest diagnoses was adrenal insufficiency, which I’ve since learned is nearly epidemic in the US, especially among those with jobs in the corporate sector, due to stress. I was also referred to a psychiatrist for depression–dual depression, no less, and ultimately acquired additional diagnoses, and drug prescriptions for anxiety/panic disorder and ADD.
These conditions were treated with powerful and potentially dangerous prescription drugs, such as prednisone and addictive psychotropics. When I protested the side effects, I was prescribed even more medications.
My belief system was still grounded in the notion that I was infected with a pathogen that would ultimately destroy my health. When I quit the ARV cocktail, I expected that I would have to take it again. The unknown at the time was how long I could go without it. My personal theory/hope was that each time I cycled on and off of HAART, my body would develop its own immunity to “the virus” and I would be able to go longer without the drugs. At the time this theory seemed plausible… to some folks anyway.
It took two years before my cd4 count dropped to below 200, and my VL was bouncing like a ball, up to 40K on one test, and a few months later one single lab came back above 20K. I recall feeling a sense of desperation… of inevitability.
Once again I hopped onto the cocktail wagon in July 2002, replacing Viracept (aka Virashit) with Viread. Once again my VL plummeted to “undetectable” and cd4 improved, though that count has never again been much higher than 400-500. And once again I got terribly sick from the side effects and almost immediately feared I had made a terrible mistake by taking them again.
I believe that my body was getting tired of trying to get my attention. It had been trying to tell me how it was doing and what it needed from me, but I hadn’t been listening. This may have been a significant turning point in what ultimately changed the way I perceive that condition we call health.
I quit the cocktail the second, and final time about eight months later in March 2003. This time I anticipated what would happen. As I had come to expect, my cd4 counts dropped precipitously and my VL shot up… almost as high as it had ever been since the first tests… for a whole month. I gritted my teeth and waited. This is undoubtedly the point where so many poz folk who attempt to stop their ARV cocktail drop the ball.
Watching the very numbers that we’ve been taught are the end-all/be-all markers of our disease state take off can be exceedingly unnerving. There are, however, explanations for erratic changes in these markers that make more sense than that proffered by the AIDS establishment which can support a decision to terminate HAART.
Regardless, the numbers stabilized… again. I can provide a chart of all my labs for the past ten years or so… but what difference would that make? Anyone can create an Excel spreadsheet.
What I share here isn’t to be proved or disproved. It can only be believed or disbelieved… or maybe just skeptically accepted, which is undoubtedly a wiser compromise than simply believing, anyway.
So… how has my health been? I continue to experience a lot of fatigue and weakness as well as intermittent bouts of depression, a problem I had before testing poz. In fact all of my symptoms can be explained without blaming “HIV”. I’ve been diagnosed with multiple endocrine deficiencies. I am hypopituitary; hypothyroid; hypogonadal and have adrenal insufficiency. I have no way of knowing if these conditions predated my alleged seroconversion, or perhaps even created the conditions that triggered a positive test result.
Looking back, it’s easy to see that several years of incapacitating health problems were as likely explained by the the massive amounts of doctor-prescribed drugs, not the supposed “HIV”.
By 2006 I was taking 28 prescription drugs for all my different diagnoses, even though I was taking zero ARVs. Three of these drugs were Class III controlled substances; four of them were injectables; total cost to my insurance company was over $14,000. Not included in that cost was human growth hormone, supplied to me under compassionate use, nor IVIG, which was covered under a different insurance plan. I understand that the cost of those probably exceeded another $1,000 per month.
I was taking one or more each of psychotropic; hormone, steroid, amphetamine, benzoid, antibiotic, antifungal, antidiarrheal, antidepressant, and more. I told my family that if I didn’t have prescriptions and insurance I’d be called a drug addict, and that they would have to talk to me through a very thick plastic window.
The medical complications that I have had that required hospitalization, or other serious treatment include osteoporosis; seizures; neurological problems; a DVT and MRSA (antibiotic resistant staph)… all of which were caused by other medical treatments or drugs. I have also been to the emergency room for sprained ankles, malaise, fatigue and serious injuries, such as cutting my thumb on a table saw, all the result of being so doped up. For years I required the use of a walking stick to help me remain upright and I avoided public places because of the bright lights, noise and crowds.
Though I have never been diagnosed or treated for an “AIDS-defining” disease, my condition does meet the definition of AIDS because my cd4 count was below 200 (twice in eight years).
There was an MRI taken in March, 2006 that showed inflammation in my brain… diagnosed at the time as likely early stage HIV-related dementia. More likely, the inflammation was probably psychotropic drug-induced, as subsequent neuro-psych testing has since ruled out any possible dementia since I’ve quit those drugs.
The DVT blood clot I experienced six months later in September, 2006 was another major defining moment in the evolution of my beliefs about health. It was a sudden, unexpected and very frightening event. It was an immediately life-threatening event. And the doctor’s prescription? Rat Poison!
I researched the Internet and stumbled upon information about nattokinase, a proteolytic enzyme that “eats” dead or diseased tissue, and which is especially fond of blood clots. Natto was developed in Japan, where it is commonly used for a variety of ailments. Even though weeks of treatment with Coumadin/warfarin/d-Con failed to clear the blood clot, the enzymes managed to do so in less than two weeks! I have the MRI to prove it. And another doctor bites the dust.
Early in 2007 I took off for warmer climates to contemplate my situation. The phenomenal success of an “alternative” treatment against the DVT was only the latest experience to make me stop and think about what I believed about medical care. I was reading more information about the various “dissident” positions on health, illness and AIDS. I remembered that these alternative explanations had been around since the ’80s, but that I had dismissed at that time, convinced by the “overwhelming evidence” that HIV causes AIDS and that AIDS destroys t-cells, and that’s why all my friends were dead or dying. Had I made a mistake believing the experts and scientists?
When I finally listened to what my body had been trying to tell me, I realized that the drugs I was taking were the cause of my illness! My mind had been wrecked. Doctors and the medical establishment had not only tried to coerce me to take toxic ARVs, but I had been prescribed dozens of potent drugs at the same time, many of them with serious side effects of their own, few of them studied for interactions in such combinations.
Supplementing essential hormones with synthetics was sending my body a message that it no longer needed to produce them for itself and those organs became lazy and atrophied.
Monthly sessions of IVIG, an intravenous infusion of components filtered from blood donations of thousands of people, many of them IV drug abusers was infusing my system with untold quantities of foreign particles that were added stressors to my already overwhelmed immune system.
Every complaint… every symptom I reported to any doctor was presumed to be the result of my so-called HIV infection. Once that “cause” was determined, there was no need to search further. Duly noted in my medical records was the family history of autoimmune dysfunction: dad’s myelofibrosis and Reynaud’s syndrome, my brother’s diagnosis of fibromyalgia and my mom’s hypothyroidism and chronic depression. I questioned whether much of what I’m dealing with is the result of some genetic predisposition to autoimmune deficiency. Add some damage from the medical care I’ve received, a history of substance abuse, childhood exposure to pesticides such as Atrazine; living in an increasingly toxic world with diminished nutritional value in our food supply and… tada… maybe I have my answer. The answer to why things are the way they are… not necessarily the answer to what to do about it all.
After spending five warm, sunny winter weeks on the Gulf coast, I sought the advice of an alternative practitioner. A doctor who had taken up non-traditional methods following her own near-death experience from an auto accident, she was also trained as an osteopathic doctor, an added benefit I’ve always appreciated when dealing with allopathic doctors.
We embarked on an overhaul of my regimen, keeping only the best parts that worked. I tapered off the worst drugs (Adderall, klonopin, antidepressant, etc.) and then quit ALL my prescription drugs in March and April of 2007. I began taking lots of nutritional supplements and herbs, under the direction of a pharmacist/nutritionist at the same practice as the doctor I was seeing. I even went so far as having IV nutrients, though I found it odd that I would do such a thing, given my aversion for sticking any more needles into my body.
I changed my diet even more than I already had previously. I quit all dairy products (that is hard to do!) I tried (still do) to eat only organic foods, and drove 70 miles to purchase grass fed meats at an area locker.
Man… I soared. I had so much energy that sleep became problematic. I was writing ecstatic letters to my family and friends. Once again, I had “discovered” the secret to health, vitality and long life and it was imperative that everyone else know about it.
There were/are many other things I have undertaken over the years to improve my sense of well-being… my health.
I quit smoking cigarettes on my father’s birthday in 2001, about a year after he had died after a protracted illness at home. Of course I’d quit many times before that, but this time it has stuck. When others talk to me about their interest in better health, and whether they should take this vitamin or that herb, I am a bit of an old fuck when I tell them that as long as they are smoking cigarettes, or drinking two liters of soda each day that they may as well save their money on supplements.
I also gave up all alcohol for about a year, though I have recently begun to enjoy a glass or two of red wine with dinner a few times a week.
I pursued a wide range of so-called “alternative” care in an attempt to address my health from as many different directions as possible, without the introduction of foreign or toxic substances.
A Native American shamanic hypnotherapist (try finding one of those in your insurance provider directory!), RedCrow taught me how to use self-hypnosis to help me direct my subconscious.
Acupuncture, massage (mmm…) and biofeedback for various conditions—neurological problems in particular proved to be beneficial… without the unwanted side effects of the drugs.
I experimented with “zapping”… using a wavelength generator to kill pathogens and parasites in my body. I was unable to validate its effectiveness to recommend it to anyone else, but at least it caused no harm.
Indeed, most of the therapies I mention above are unlikely to be helpful to anyone who refuses to “believe” that they might be. In just such a manner, I would suggest, does mainstream western medicine work… or not work. The pharmaceutical industry runs a huge mass-hypnosis campaign to impart a belief in their products that is hard to find in objective reviews of their research.
I sincerely believe that if I had been on HAART the past ten years I would not be here to write this message (that doesn’t make it so… it’s just what I believe). On the other hand, my friend Brad has been positive for more than 20 years and he has been on the cocktails since they came out and seems much healthier than me.
I continue to hope as I strive for improvements. I make myself get out for bike rides if the weather is nice. Currently, I want to make changes in my social life… or lack thereof. I’ve become something of an introvert and hermit. I used to really enjoy meeting with and visiting other people and I want to regain some of that.
What matters most is that a person do something… whatever they trust and believe in. Those who listen to the death doctors and believe that they are going to die will do exactly that.
What I hear from so many is that they do not trust the drugs and that they want to believe they can live without them. If you are one of those people, I simply share my story to let you know that is not an unreasonable thing to believe.