The only thing more devastating than finding out I was HIV+ was finding out my CD4 count was only 240. It was about a month after testing positive and I had been psyching myself up, willing myself to be healthy, to be an “elite controller” or to find some miraculous nutritional/supplemental regimen so I wouldn’t have to go on meds. My research was constant and always on my mind. I was going through a jar of coconut oil each week and drinking 12 drops of 35% food-grade hydrogen peroxide diluted in distilled water two to three times per day. I assumed I would have a CD4 count of at least 800. I was wrong.
The author is a twenty-something HIV+ gay patient living in Southern California. Last April, “Pete” wrote My Year an an HIV Patient. Readers can contact him through the comments of this blog.
I was reluct to start HAART medications because I had read about the side-effects people have: occasional AIDS-like symptoms, metabolic problems, mitochondrial damage, liver damage, heart damage, general pre-mature aging and things I don’t even remember. And even though I expected to get free meds from the HIV-clinic, I knew that even the cheapest regimen cost about $1,200 per month, which was ridiculous no matter who was paying for it. I just wasn’t interested in being a part of any of it. I had long considered myself a “Whole Foods hippie,” with the (what I believe to be 100% accurate) belief that any ailments can be treated naturally or holistically without a bunch of pharmaceuticals. I wasn’t going to cave in because of some virus.
Especially since there seemed to be such a ridiculous number of substances that killed HIV (most of it in-vitro, of course). Monolaurin. Calcium-spirulan (an extract of spiralina). Oxygen (hence the hydrogen peroxide – a treatment I probably shouldn’t have tried in hindsight). Olive leaf extract. Garlic. Apple cider vinegar. Selenium. I read lab reports in which researchers complained HIV was “too fragile” to study without a great deal of difficulty. For a while, I joked that if you type the name of any vitamin along with HIV in Google, you could find a report about how that substance had been shown to kill HIV in-vitro. Considering how much fear the virus caused in people, it was showing itself ( at least in my research) to be a pathetically vulnerable pathogen.
Which is why I was so frustrated for months with my ability to alter the surrogate markers of the viral load and CD4 count with my holistic regimens. My viral load rose and fell (until I finally got it super low, seeming to correspond with my following the ‘alkaline diet’ protocol). My CD4 count rose and fell as well – usually in opposition to my viral load. But let’s rewind back to those very first test results.
My CD4 count was 240. My viral load was in the forty thousands. The nurse showing my results looked at me sympathetically:
I think we caught this early, but it looks like the virus has decimated your immune system already. We need to start you on meds immediately!
I descended into the same shock I experienced the previous month when I had been told I was positive. But I knew instinctively that the meds were not the right way for me to go… At least not yet. And I knew that “yet” should be something that never comes.
The pressure to take meds is very intense. Even when you get diagnosed they are talking about them. The clinic where I tested positive has some sort of facilitator call you after you get “your diagnosis.” They offer to call to counsel you on any questions you have, acting as a liaison between you and the doctor. The facilitator isn’t an expert either – he’s HIV+ – basically there to tell you that you’ll be okay. “Just take the meds,” he says, echoing the doctor’s concerns when you resist or interrupt the drugs:
Why are you so resistant to taking them? Have you heard horror stories about them?
On two occasions, I replied to my doctor saying, “I’ve read that they cause mitochondrial damage, liver damage, kidney damage, heart damage and mess with your metabolism. I’d like to try to treat this naturally.”
None of my HIV doctors ever mentioned
the doctors I’ve said that too have anything to say about the side effects, but they all say something to the effect that “Only the medication can treat HIV. Natural solutions just aren’t strong enough.” And yet, I haven’t seen any proof of that in my research. My research over the past year has pointed to a lot of dead-end studies on promising natural suppressants to HIV that are never really followed up on. No one has proven that HIV can be treated naturally because no one has ever put enough money and time into it… At least not as much money and time that’s been put into “proving” HAART is effective… But that’s a whole other rant about clinical trials, pharmaceutical bribes and FDA corruption to go on about.
I didn’t like my doctor. I hated the pressure to go on the meds. I was disgusted by how transparent the assembly-line treatment nature of the whole operation was, and how little critical thinking was being displayed. Even though the “virus had already decimated” my immune system, my very next test showed my CD4 count had risen to almost 300 and a viral load that also mysteriously rose to almost 400,000. These revelations made my doctor even more intent on getting me on the meds than explaining what was going on with my numbers and how it all worked.
I had made some HIV+ contacts to help me navigate this new world. They all thought I was foolish for not wanting to be on the meds – they all tried to give me advice. One of them confirmed my suspicion that the free HIV clinic I was at did not give the best treatment. Since I had private insurance, I decided to go to a well-known private HIV clinic, which had some of the “best HIV doctors in the world,” ask pertinent questions and possibly get prescribed a regimen that would work for me before taking all the data back to the free HIV-clinic so I wouldn’t go broke. So I scheduled an appointment at the UCLA HIV clinic.
Aside from having a nicer waiting room and older clientele, I discovered that there wasn’t much difference between the two clinics. I first met with an intern who wanted to devote her life to fighting HIV and working in a clinic like this. She asked me questions about my health. She asked what supplements I taking. She let out only a mild amount of skepticism when I told her I was trying to treat my illness naturally. The UCLA doctor echoed the same sentiment as my doctor at the free HIV clinic:
Wow! Tthe virus has damaged your immune system quickly. You need to be on meds immediately!
But what if my CD4 count was usually that low even without HIV infection? Of course, there was no way to answer that question because the only people who ever get CD4 counts done are those with HIV and some immune system cancers. Frustrated, I asked her what medication regimen she would recommend me going on. That’s when that conversation started – including a discussion about the side-effects – which I appreciated… But I was still disappointed by a strange lack of real knowledge about WHY things were the way they were.
For example, when describing side-effects of the HAART drug Susteva, the doctor said it could include really vivid dreams. I asked her why an anti-viral would be messing with brain chemistry and she shook her head and said, “We don’t really know.”
The documentary House of Numbers (2009) was a wake-up call for me. Even when I was first diagnosed at that clinic, things just seemed “off.” I can’t say with any conviction where I stand on the issue of whether or not HIV even exists in the way that mainstream medicine believes it does, but given all the fines that have been levied against Big Pharma in recent years for un-ethical and illegal practices, I can say with certainty that there is a lot of shady, downright evil motives surrounding the diagnosis and “treatment” of HIV – most of which appears to target the gay community.
Over the course of the past year, I’ve learned a lot about how insidiously the pharmaceutical industry markets directly to the gay community, and how much effort is expended in making sure the propaganda is swallowed without any critical thinking.
Earlier this year, I (unknowingly) wound up at a free dinner funded by GlaxoSmithKlein (GSK), which turned out to be nothing more than a pharmaceutical propaganda seminar. Pretty much all the attendees were HIV-positives involved in various Los Angeles-based ASO (AIDS Service Organizations). The topic of the night was about the importance of the provider-patient relationship and how to improve it. The host of the evening was a gay, HIV-positive doctor who runs a highly successful HIV-centered private practice in West Hollywood.
A bunch of things stood out that made me uncomfortable. For starters, everyone was required to go around the room, introduce themselves by First Name, the number of years they had been HIV+, and what medications they were on. It seems like there is such a push by the medical community to get HIV-positives to form a relationship with their virus, and more importantly, to the responsible adherence to their medication regimen. To be HIV+ is to be synonymous with daily medications. It is to be a part of your basic identity, even if you don’t necessarily wear it on your sleeve. And even though a cure is always “just around the corner,” if you’re diagnosed, you need to be prepared to take at least one pill a day for the rest of your life.
Another part of the discussion that really stood out, quoting the doctor:
We’re not allowed to fully admit it yet because there’s some research still pending, but the current thinking is that if you’re adhering to your meds and your viral load is undetectable, you can blow your load in anyone’s ass and you won’t be able to infect them.
Basically, as long as you are taking your medication and you are part of this treatment system, you have permission to keep doing what probably wound you up in this situation to begin with… But ONLY if you’re on our meds.
I’ve witnessed a lot of cognitive dissidence with people once they begin taking their meds. One friend of mine was “diagnosed” six years ago and was considered an elite controller. During this six-year period, he never got an HIV-related (or unrelated) illness. His CD4 count recently started to fall. Out of fear of developing AIDS, he went on Atripla and was immediately sick for three weeks while he was “adjusting to the meds.” He didn’t see the irony of a medicine used to treat an illness that had never made him ill actually making him sick. But then I know another guy whose been on meds for 17 years whose never been sick or had any side effects from the meds. I get the impression he is lucky and in the minority.
I got a call from one of my “friends” at the ASO who invited me to the GSK dinner. He wanted to check in and see if I had decided to go on meds yet. When I told him no, he said, “You know, I’ve been reading a lot about how toxic HIV is to the body… It’s causing all of these cells to die, and those cells are spilling toxic chemicals into your body. They’re thinking now that letting the virus do that is like subjecting yourself to longterm chemotherapy treatment. It’s not healthy.”
When I heard that, my brain metaphorically exploded, since the HAART regimen these days is pretty similar to chemotherapy. And in the past decade, scientists were researching ways to use chemotherapy drugs to fight the HIV virus – not to mention that the incredibly deadly chemotherapy drug AZT was put back on the market to fight HIV in the 80’s, even though it was deemed too toxic to help cancer patients. I asked him to send me some links to these articles but he never did. A Google search of HIV and cyto-toxicity didn’t return much information either. When some other friends who work for ASO’s expressed some similar sentiment to me, I figured that line about HIV being like chemotherapy is probably a new marketing script people are being trained to say.
In March this year, policy was officially change in the US to immediately prescribe everyone diagnosed as HIV+ with meds, regardless of their viral load and CD4 count, giving patients even less time to think critically in such a shocking, upsetting time. Everything around the diagnosis and treatment of HIV / AIDS has grown into an insanely efficient system in which a person never has to have a thought about what’s happening to them. Critical thinking is greatly dissuaded, and the system has actually evolved into something that rewards adherence. “Look, you can keep having your fun if you do what we say!” This would be a humanitarian triumph if it were all scientifically sound and didn’t reek of profiteering.
Because of my CD4 count, I’ve been officially “diagnosed” with AIDS. The lowest it’s been is 170, and the highest my CD4 count has been has been 297. My CD4 count has, laughably, been mostly over the 200 threshold that defines AIDS, even after that first dip that got me the diagnosis. In conjunction with following the alkaline diet, my viral load has also been consistently low, between 2,000 and 5,000. For almost the entire year I’ve been “HIV+,” doctors have been trying to prescribe prophylactic Bactrim to prevent my inevitable PCP pneumonia infection… I’ve refused to go on Bactrim, and I haven’t developed pneumonia either.
Whether the HIV orthodoxy is right about the HIV=AIDS theory or not, I’ve at least proven that viral load can be suppressed in absence of HAART, though it hasn’t translated to a CD4 rebound in me. Over the past year, especially while being ridiculed by friends and acquaintances for my decisions, I’ve had doubt that I’m doing the right thing and been worried that I will develop some sort of AIDS-defining illness. It’s then that I have to remember this quote from the HIV-orthodoxy website, Avert.org. This quote is from the conclusion section of a very, very long article written to debunk the opinions of HIV dissidents:
People should be encouraged to question scientific orthodoxy. However, the views of AIDS dissidents, which have been well known for many years and thoroughly debated in scientific journals, have failed to win support. The core arguments of the Perth Group (that HIV has not been isolated according to their own particular rules) and Dr Duesberg (that no one fully understands how HIV causes AIDS) do not invalidate the wide range of evidence outlined on this page. The HIV theory is compelling because it provides a simple, unique cause that consistently accounts for all of the observed phenomena.
Right there, it admits that the HIV-model of AIDS is a theory. These pills used to treat “it” have been elevated to a religious idol status, and I cannot conform to a treatment plan that places corporate interests, profits and a cult-like mentality above patient health and wellness.
A doctor once told me, in frustration to my refusal to go on meds, “You know this will kill you, right?”
I’ll believe it when I see it.
See also One Mother’s HIV Nightmare and My Year an an HIV Patient.