[captionpix align=”left” theme=”photo” width=”225″ imgsrc=”http://www.resistanceisfruitful.com/wp-content/uploads/2012/04/the-look21.jpg” captiontext=”With my brother Gordon, March 2000. The effects of wasting are visible after only about 15 months of ARV use.”]
You might not know it from reading the comments left here on my blog, but there are more than a few AIDS dissidents who really don’t like how I think or what I write about.
There’s a whole thread on a very popular Facebook page called “Rethinking AIDS”, discussing my open letter to Dora. Last I looked, that thread had nearly 100 comments, and very few of those comments were about Dora, Ruggiero or the defense of academic freedom.
No, the gist of the thread was whether or not I am in “the AIDS Zone.” It seems that because I did not use “air quotes” around the term “HIV disease”, I’m not really an AIDS dissident. Others took issue with my post for daring to publish that some AIDS Rethinkers hold a very narrow view about “HIV” and “AIDS”, while others of us are merely “questioning” the whole affair. None of them chose to comment directly to me here.
Some of the most visible and vocal Rethinkers seem intent on imposing their own “beliefs” (another loaded term that deserves quotes) on the entire movement. There has long been a tendency to try to impose a sort of litmus test to determine whether or not one is a true “AIDS dissident”.
Since I first met the AIDS dissident community via the AIDS Myth Exposed forums—since renamed Questioning AIDS—several years ago, I’ve become aware of several of the various factions, distinctive personalities and divisions within that broad group. Now I’m finding it ironic just how guilty some of these people are of practicing their own version of “bone-pointing”.
Before I go any further, regular readers may notice that I’m using a lot “air quotes” in this article. When I write, I think about who my audience is. My last two posts were written for a general audience, as well as some others who consider themselves HIV-positive because of a test result. After all, the title of the first post was… “An open letter to Dora”. It should have been obvious that I was addressing my thoughts to those who believe there is an infectious, exogenous retrovirus that is the sole and sufficient cause of AIDS, and that modern antiretroviral drugs can successfully hold this nasty bug at bay. Putting commonly used terms and words in quotes would only distract from the more important message I was trying to convey.
This post is written for a subset of “AIDS dissidents” who are intent on defining themselves and the movement they are a part of with very specific concepts and constructs that cannot be discussed or shared without the use of quotation marks. Many of them do not believe that “HIV” exists because it has never been properly isolated, and therefore any references to this non-existent entity should be exceptionalized with air quotes.
Because “HIV” does not exist, according to the mind-think police that dominate the discourse at Rethinking AIDS, or at best, the virus exists, but is harmless, it is unacceptable to refer to such things as “HIV tests” or “HIV positives” or “HIV disease”. According to this point of view, antibody tests, commonly referred to as the “HIV tests” are non-specific and can be triggered by many illnesses. Because of this these tests are useless and should be ignored, if not outright banned.
As far as I can tell, nearly all AIDS dissidents do agree that there can be disease of the immune system and other diseases. According to the “orthodox AIDS dissidents” there is no reason to correlate such illness with “HIV” at all, though how one is supposed to diagnose or define immune disease is not entirely clear to me. Flow cytometry, the mechanism used to measure specific populations of cells presumed to be essential in the immune system—specifically CD4 t-cells—is imprecise and subject to wild fluctuations and is therefore useless as well. Such tests are best ignored, or better yet avoided altogether. That goes double, or maybe triple for the polymerase chain reaction (PCR) “viral load” test. Remember, according to mainstream, orthodox AIDS dissidence, since there is no “virus”, anyone failing to put the word in quotes cannot be considered a true AIDS dissident®.
Personally, the only thing I have in common with many of these so-called “dissidents” is that I find that the orthodox explanation of “AIDS” is inadequate, but I can’t prove that it is entirely wrong, either. My observation leads me to think that immune dysfunction has many causes, and is almost always multifactoral and the result of cumulative stressors. “AIDS” in Africa is very different than “AIDS” in the West, but both can result in the collapse of the immune system and subsequent illness. The various risk groups—”fast track” gay men; hemophiliacs; IV drug abusers; people living in poverty—all have unique characteristics that can ultimately result in the failure of one’s immune system.
Just as there are different manifestations of “AIDS”, there are wide differences between those of us skeptics who carry the designation “HIV-positive”, based on a polyreactive antibody test (my term for us is “Affecteds”). Some of us fit the orthodox “AIDS paradigm” (another favored term in dissident-land), while others defy it completely. Some of us are apparently quite healthy, while others present with a variety of health problems. Too many of us have died.
We fail our cause when we try to impose our personal experiences onto others. There is no question whatsoever in my mind that people like Brian Carter may be examples of so-called “false positives” who will never develop immune illness. Others, like Tomas Brewster and cult goddess Christine Maggiore, exemplify the failings of the “HIV-test” by testing “positive”, then “negative” and then “indeterminate”. Who knows what the heck is going on with them, but they have very good justification for distrusting all things “AIDS”.
Some of us Affecteds who have shunned the orthodox treatments have progressed in classical ways: declining CD4 counts, unusual infections or cancers. Emery Taylor and David Collins come to mind.
[captionpix align=”right” theme=”photo” width=”225″ imgsrc=”http://www.resistanceisfruitful.com/wp-content/uploads/2012/04/lookin-good-2001_121.jpg” captiontext=”Lookin’ good twenty months after quitting ARVs in 2000.”]An even earlier blog post that I wrote, arguing that declining trends in CD4+ cells might actually be significant, hasn’t made me very popular in some quarters of the so-called AIDS dissident community either. Indeed, having a dissenting point of view has caused me to be considered something of a heretic. Once again I was castigated by some of the more outspoken folks at the Rethinking AIDS page on Facebook for not being a “real” AIDS dissident, and being stuck in “the AIDS zone,” and some other ridiculous labels in an attempt to disparage me personally.
I was also questioned about that post later in a saner and more friendly venue; an email distribution list managed by Terry Michael, the director of the Washington Center for Politics and Journalism, who asked, among other things, whether I am obsessive and possibly a hypochondriac.
Terry and I share a few things in common: we’re both middle-aged gay white men; we have both worked in journalism (though I have no professional training); and we share an interest in the political process. I have decided to respond to Terry’s questions here, and he can feel free to share it with those people who are on his email distribution list.
On March 30, Terry wrote to several dozen readers on his distribution list:
This has been on Jonathan Barnett’s “www.Resistanceisfruitfall.com” [sic] web site since Dec. 30, 2011, but I just found it, and find it to be a very useful discussion of T-cells.
Who needs t-cells, anyway?
One of the most interesting encounters I have had with someone who fell into the AIDS trap was a 30-something gay man who I engaged in a conversation about my disbelief in the HIV=AIDS theory. I asked him why he had started to take the chemo. He said his doctor advised him to do it. I asked him his T-cell counts when he started the drugs. The answer: 900! Also, I knew this individual to be a heavy user of crystal methamphetamine.
It has always been my understanding that illness can bring with it an INCREASE in T-cells–which seems logical to me, since the body is producing a greater number to deal with health challenges.
I am wondering why Jonathan has had so many T-cell counts. He reports 80 over 13 years, which would be an average of six per year. That just doesn’t seem logical to me. I don’t want to be critical, but it seems kind of obsessive. Perhaps he could clarify that.
Regards, and thanks to Jonathan,
Of course I want to know when readers have questions about anything I write. That’s why my blog offers a place for comments, feedback and questions. I consider this topic of markers to be important, or I wouldn’t raise it as often as I do. When I asked for some time to compose my response, Terry graciously told me to take my time, but then added two more questions:
I would add one more question. I watched your video–recorded, I think, a few weeks ago. You seem to have had a very large number of clinical marker blood and urine tests over the years. A skeptic might say that you are exhibiting signs of hypochondria. <snip>
I said one more question, but I have a second. How much of the health problems you feel you have now could have been caused by your several years on the chemotherapy?
I drafted an initial response pretty quickly, but have been letting my answers sit for a bit. I found myself getting carried away, and I have ended up writing a rather lengthy treatise. I realize that I’ve gone well beyond the basic questions that Terry asked and I have probably reacted more defensively than he expected or deserves. I hope he and other readers will understand that some of that defensiveness is because I am addressing these separate, but in my opinion, related challenges in a single post.
Finally, a note about the graphic images I’ve chosen to use in this post: Every blog post that I have written includes a graphic. I have even been willing to purchase images that I consider appropriate for a particular message. I was stumped about finding an appropriate image for this post. I found nothing that grabbed me, so I thought I’d caricature myself as a hypochondriac. With my partner of 30+ years looking over my shoulder as I was reviewing some of the images I’ve stored over the years, we were both reminded of how many times my body (and my mind, for that matter, though that is much harder to document with a picture) has manifested some pretty fugly symptoms the last thirteen or so years. I’ve always understood that a hypochondriac was a person who thought they were sick, even when evidence of illness was lacking. These images document some very real and physical symptoms, so I’m including them as part of my story, even if they also support the notion that I’m obsessive. If a picture speaks a thousand words, this will be a very long slog indeed for you, the reader.
Thank you for reading my blog, and asking the questions you asked. It gives me an opportunity to try to address your request for clarity, even though my best guess is that any answers I offer will result in even more questions. Though I’ve written about some of these things before, they bear repeating now, in order to help you and others understand my unique and personal circumstances and how I found myself on the path I’m on.
[captionpix align=”left” theme=”photo” width=”250″ imgsrc=”http://www.resistanceisfruitful.com/wp-content/uploads/2012/04/sunken-cheeks.jpg” captiontext=”‘The look.'”]I can’t disagree with your observation that the number of times I’ve had t-cell counts tested the last 13 years might seem obsessive. When I first got my positive test result in 1998, I was a firm believer in “hit it hard, hit it early”. Then, as now, the typical orthodox pattern of treatment for a HIV-positive patient who is considered stable, would be “routine” labs every three months. The HIV specialist who supported my decision to quit the ARVs was testing monthly when I first went off the drugs in 2000 as part of his commitment to monitor me. We didn’t know how I’d manage, and in hindsight, obsessive is too kind a word. I panicked and went back on the ARVs in 2002, after my CD4 count dropped below 200 for the first time, and then quit the drugs a second time seven months later.
There are also periods of time when I didn’t test at all for several months, almost a year.
I haven’t been an “AIDS dissident” very long. When I tested positive in 1998, I was completely immersed in the belief that the drugs were the only hope for someone newly diagnosed. My personal experience with those drugs is what caused me to again question everything I thought I knew. I’d started seriously questioning the medical care I was getting in 2006/2007, several years after I had quit ARVs. This experience with drug-based medicine is actually what led me back to AIDS dissent (I was a questioner prior to testing positive, back in the days of the New York Native and John Lauritsen).
When I quit the drugs more than 10 years ago, Structured Intermittent Therapy (SIT) was a promising concept, based on the premise that the immune system could learn to cope with “HIV”, if only it was given enough time free from the ruthless virus. I embraced a drug vacation because my tolerance for the so-called cocktail of drugs was very low. I assumed then that I would have to go on them again at some point, and for a long time the only markers I was aware of for making such decisions were CD4 counts and viral load. As I have learned more about alternative health in general, and more specifically the questions surrounding the whole HIV-is-the-sole-and-sufficient-cause-of-AIDS hypothesis, I put less emphasis on those numbers alone, but I do continue to monitor them, and I think the article I wrote, that you linked to, does a fair job of explaining my own rationale, so I won’t repeat it here. I am not writing about those two particular markers solely because I’m fixated on them, so much as that I feel a need to counter and balance what I consider to be a dangerous message being broadcast by the most prominent and vocal quarters of the AIDS dissident community: that these markers are meaningless.
[captionpix align=”right” theme=”photo” width=”250″ imgsrc=”http://www.resistanceisfruitful.com/wp-content/uploads/2012/04/bells-palsy.jpg” captiontext=”I have never completely recovered from Bell’s palsy in March 2010.”]Because I suspect that a person with extremely low t-cells—particularly in conjunction with a positive antibody test (which is not evidence of “HIV”, imo)—is at risk of serious illness, I am interested in finding ways other than ARVs to stop the decline that so many of us who test Gallo-positive experience. As part of these various self-directed experiments with alternative treatments, I continue to monitor both t-cell counts and percentages, as well as PCR ‘viral load’, though I’m only slightly less obsessive about also tracking things like my RBC, various markers from Organic Acid Tests, selenium and glutathione levels, intestinal flora and other markers.
Is there a frequency that would be considered more reasonable or rational, or at least less obsessive? Once a year? The trend would still be what it is: a downhill slide that has accelerated the last three years. Now that my CD% has dropped to only 9% (down from 45% in 1999), it is likely I will continue to test frequently, as I also continue to try to find an alternative to reverse what I consider to be a life-threatening trend and level.
I understand that some AIDS dissidents dismiss the value of CD4 counts specifically, and now, flow cytometry in general, but frankly I haven’t read anything that justifies dismissing these markers, or the testing methodology as meaningless. Fickle and problematic, yes, but not meaningless. Indeed, because there can be short-term variations and fluctuations in these numbers, logically, the best way to know what real change, if any, is occurring is with more frequent testing over a longer period of time, not less.
In a subsequent email, you asked me a couple of additional questions, which made this exercise start to feel more like a sort of inquisition, so I hope you’ll pardon me if my response likewise broadens the topic a bit.
Am I a hypochondriac? That is a definitional and subjective term, so I will leave it to you whether or not to apply the label to me. First, you might ask whether or not I have cause to be concerned about my health, and then secondly, whether my decision to publicize and share my own journey should be considered evidence of excessive fixation on it.
[captionpix align=”left” theme=”photo” width=”250″ imgsrc=”http://www.resistanceisfruitful.com/wp-content/uploads/2012/04/surgery_11.jpg” captiontext=”Sliced and diced by the cancer chasers.”]One of the most common refrains of advice heard from AIDS dissidents is to treat the actual illness, if any, not the “HIV”. Unlike you, I have a rather lengthy laundry list of medical diagnoses, and I have had health issues since I was a youth. I missed more school than I attended in 7th grade (I believe), mostly due to illness. I had mononucleosis as a teen, for example, that kept me in bed for weeks, as well as frequent swollen glands, tonsillitis and other common illnesses. What was exceptional was the number and frequency of infections that I experienced. I have been exposed to multiple viral and other infections, including CMV, EBV and HepB. I grew up around chemical pesticides and herbicides on a farm, and later asbestos, VOCs, and other potentially toxic materials doing residential renovations of century-old homes.
I have had my share of exposure to environmental toxins, even before I dabbled with IV drug use as young adult, and before I overcame my own self-hatred as a gay man and discovered the Joy of Gay Sex in the 1970s and 80s. I may not have been on the autobahn of the “fast track” gay lifestyle, but I was definitely on the highway. I am not unfamiliar with The Pines, the brambles, Key West, P-town, San Francisco and the Denver Swim Club. I have my own “personal best” for number of tricks in a single 24-hour period, but I’m not going to declare it in writing. IF exposure to semen from large numbers of men is a risk for oxidative stress disease, as suggested by The Perth Group, I need look no further.
According to allopathic blood cultures, I am completely free of bacterial, fungal and mycobacterial infections, yet according to organic acid testing, performed at a non-traditional medical laboratory, my body is producing markers that suggest repeated immune overstimulation; bacterial and fungal overgrowth in my gut; and neurological problems.
[captionpix align=”right” theme=”photo” width=”250″ imgsrc=”http://www.resistanceisfruitful.com/wp-content/uploads/2012/04/brain-on-drugs2.jpg” captiontext=”A brain MRI in 2006, when I was taking 24 prescription drugs (none for ‘HIV’), revealed atrophy and inflammation. Diagnosis: Early HIV-Associated Dementia (HAD).”]There is evidence of shrinkage and atrophy of my brain beyond what is expected for a man my age. This was first noted in 2006, based on a MRI. Solely because I’m poz, the diagnosis was early stage HIV-associated dementia. If that were true, I haven’t followed the typical course of progression. I don’t think it was an accurate diagnosis, but a more recent scan confirms evidence of what has been described to me as “advanced aging”.
I have had at least four deep vein thromboses (blood clots) in my left leg. I have a cystic mass in either my parotid gland, or in a nearby lymph gland (depending on which doctor is examining) that has persisted for more than three years now. It may be the single most objective marker of whether or not the alternative treatments I am experimenting with are working or not, as it has been shrinking since I started doing ultraviolet light therapy (blood irradiation) a few months ago. First it was diagnosed as cancer, then when that was ruled out by surgical biopsy, tuberculosis or other mycobacterial infection. Extensive allopathic blood cultures rule out TB, so now they’d like to cut me open again and take another look. Guess what? Not.
This is not meant to be an exhaustive and complete list, but rather to give you and anyone else with similar questions a sense of some of the reasons I have had so much testing done over the years. CD4 and PCR are just two of many indicators of health that I have monitored. There is some objective evidence that my body and my immune system have been and probably still are overworked from dealing with infections, some of which may still not even be identified. If there are means other than a process of elimination to diagnose, I’d welcome any suggestions, as I do from so many others who have expressed concern. It is a challenge to stay out of “the zone” and still try to take responsibility for my own health, and I’ll be the first to acknowledge that more than once I’ve found myself on an out-of-control medical merry-go-round of experts and specialists!
[captionpix align=”left” theme=”photo” width=”250″ imgsrc=”http://www.resistanceisfruitful.com/wp-content/uploads/2012/04/barretts.jpg” captiontext=”Barrett’s esophagus and fungal infection.”]I am trying to restore the balance of healthy microbes in my gut and eliminate the bacterial/fungal overgrowth without using antibiotics (the overuse of which is another risk factor in my past). I take supplements to support my body’s production of glutathione. I’ve tried to put all concern and attention to tests aside for a number of years, but after a series of unusual symptoms in early 2010, I found myself in ERs, and have chosen to try to find a balancing act between the allopathic medical care that is covered by my insurance and alternative, nutrition-based health care that may drive me and my partner into bankruptcy.
Despite all of these efforts, and coincidentally, consistent with the orthodox view of HIV=AIDS, my t-cell counts and % have steadily declined over the 13 years that I’ve been tracking them, and that decline has been consistently increasing since 2010. PCR ‘viral load’ markers have gone through the roof in that same period. I know some AIDS rethinkers who will suggest that this is the result of obsessive compulsion, or stress alone, but that would be their personal opinion, not an evidence-based observation. It is also, from my perspective, a form of victim-blaming and even “bone-pointing”.
It is troubling to have to feel defensive about being asked if I am a hypochondriac for doing exactly what many AIDS dissidents have recommended someone in my situation do: try to address the core illnesses, rather than a mysterious virus, and that is what I have been trying to do while also avoiding becoming over-drugged with pharmaceuticals again. I’ll add that finding non-allopathic healers in the Midwestern U.S. is not as easy to do as it is on the coasts. I have to drive nearly four hours each way to attend an orthomolecular clinic with an exceptional reputation that accepts me as a patient with chronic illness; not a “HIV-positive” patient. They are not treating HIV or AIDS, they are focused on overall health.
[captionpix align=”right” theme=”photo” width=”250″ imgsrc=”http://www.resistanceisfruitful.com/wp-content/uploads/2012/04/mrsa-head-2.jpg” captiontext=”Hospital-acquired antibiotic staph (MRSA) skin sores from head to toe.”]The message that is too often given by so many AIDS dissidents—both those Affected, and those who are not—to people who are “HIV-positive” is to ignore any signs of immune dysfunction and health issues by sticking one’s head in the sand. That is a classic definition of denialism, if you ask me. I understand that some will probably take offense at that observation, but we must be aware of how our message is coming across to a majority of people who stumble across the concept of AIDS dissidence, as it is currently presented.
Now, ask me if I think that an out-of-control, constantly mutating, infectious retrovirus is responsible for the progression of these markers of immune distress, and I’ll answer: “I don’t know, but I seriously doubt it.” What I do consider plausible, and important, to my way of thinking, is that whatever is being measured is an indicator that all is not normal, let alone well with my body and with my immune system. Personally, at this point in time, I think one of the most plausible explanations is that the PCR is measuring cellular debris, being caused by other problems. I think Janine Roberts’ description of retrotransposons as cellular markers of distress is a far better explanation for the increased VL than any explanation I’ve received from a doctor.
So, maybe whatever got named “HIV” does exist, but it isn’t what the Galloites say it is. “HIV” isn’t the causative factor, but rather it is the messenger, trying desperately to get our attention. Again, I really don’t know, so whatever I think or believe is little more than speculation on my part, and that speculation certainly doesn’t fit well with the definition of “being in the AIDS zone”, as I understand it. Still, I consider such a major change in a marker that I’ve been tracking for 13 years to be significant and suspect that ignoring it may well be perilous. The trick is trying to figure out what it signifies.
Finally, you asked me how many of my health problems were caused by my previous use of ARV chemotherapy. I don’t know how much, but I am certain that the ARVs, as well as the two dozen other prescription drugs I was on for much of eight years, are a huge co-factor in causing some of the problems I am dealing with today, as well as exasperating other pre-existing health problems, just as the excessive antibiotic use I experienced in my pre-Gallo years has damaged my long term health. I know it can be difficult finding a lot of information in a personal blog, but you might find Viruses in the medicine cabinet of interest.
If you were to ask my partner, or any member of my family, what my health was like when I was on the pharmaceutical drugs, they will tell you horror stories. I couldn’t walk without assistance, I could barely talk. My cognitive abilities were practically non-existent. Despite that experience, I cannot say today that no one, including myself, should never take any drug for any reason. Drugs are one option in an arsenal of medical choices, and should never be casually taken off the table for consideration or judicious use in all circumstances. What is important is to be as well informed as possible as a consumer. As a rule, pharma drugs should be the choice of last resort, not the first, and certainly not for prophylaxis. Still, I confess that I take rat poison (warfarin) to prevent new blood clots. I hate it. I denied needing it as long as I thought I could, only to develop new blood clots, and I am now resigned to taking the poison, because nothing else I have tried worked. The risks must be weighed against the benefits, and after four DVTs, I think I’ve taken enough risks already.
[captionpix align=”left” theme=”photo” width=”250″ imgsrc=”http://www.resistanceisfruitful.com/wp-content/uploads/2012/04/parotid-knot.jpg” captiontext=”On a brighter note: the cystic mass in either parotid or lymph gland is finally getting smaller, coincidentally at the same time I am doing ultraviolet blood irradiation.”]Back to your original question about my obsession with the orthodox “AIDS” markers. I honestly don’t know how to add much more to what I’ve already written in the blog post you referenced above. My perception of “AIDS” is based on my life as a gay man. I see evidence that immune systems are starting to break down across wide swaths of the human population for a whole host of reasons. On top of the stressors that everyone else is also dealing with, a group of us gay men heaped an extra-large dose of additional stressors on top of it all and pushed the boundaries of our immune systems to their limits with excess, and yes, obsessive behavior. Because so many of these stressors are cumulative, gay men are basically the canaries in a coal mine. It doesn’t surprise me that “AIDS” is spreading outside the original risk groups as more people find themselves overwhelmed with stressors and toxins in vaccines, our food supply and an increasingly toxic environment and stress-filled world.
More than a decade before the CDC’s report in MMWR in 1981, gay men were disproportionately getting sick with some unique illnesses. Doctors called it gay bowel syndrome in the 1970s. We were targeted by the public health department’s STD clinic because we had so many diseases. Here in Kansas City, a male nurse in drag, who went by the name of Wanda Lust, toured the gay bars in the VD-mobile, testing gay men for syphilis and gonorrhea. What I would give to have the ability to go back in time and see what was happening in that particular population with the part of our immune systems that our t-cells represent. These cells may not be the “big picture”, and they do not tell a complete story, but they were one of the first pieces of the puzzle that doctors treating gay men noticed, after diarrhea and STDs.
[captionpix align=”right” theme=”photo” width=”250″ imgsrc=”http://www.resistanceisfruitful.com/wp-content/uploads/2012/04/mrsa-elbow.jpg” captiontext=”MRSA sores from 2003 or so. All that remains today are the scars.”]I have many of the same issues with and objections to the terminology and the crap science that has resulted in the “HIV/AIDS” paradigm as many of my dissident brothers and sisters have, but I am forced by my own health to pick and choose my battles. I don’t advise anyone to take an HIV test, and I don’t even think everyone who tests HIV-positive should necessarily track their “counts”. It makes good sense to me why some folks choose not to. It’s a personal decision that will be different for each of us and should be based on a comprehensive and wholistic view of an individual’s history.
The significance of trends and extremely low counts was the main gist of my post about t-cells, and it’s unfortunate that I did not succeed in making that clear. Instead of addressing any concerns with the case I made, some AIDS rethinkers have reacted like high priests who have to deal with a heretic in their midst.
[captionpix align=”left” theme=”photo” width=”250″ imgsrc=”http://www.resistanceisfruitful.com/wp-content/uploads/2012/04/prettyface3_use.jpg” captiontext=”This was not the first, or even most severe herpes outbreak on my face. It was, however, the first case to be blamed on ‘HIV’.”]For the record: I’m an AIDS Questioner, not a Rethinker who claims to have answers, and certainly not a denialist. I have friends who have literally been brought back from the brink of death with ARVs and I have more than one close HIV-positive friend who hasn’t died of AIDS, despite living on ARVs for decades. On the other hand, I’ve also lost dozens, probably hundreds of friends who took the drugs. I probably hate the drugs as much as anyone else does, but there seems to be no single clear-cut point of view that holds true for everyone.
AIDS dissidence—at least the version of it purported by Rethinking AIDS that is most commonly found on the Internet—has failed to acknowledge that there may be correlations between immune markers and the various alternative explanations for the disproportionate illness among sexually active gay men, let alone propose ways to reduce the prevalence of immune dysfunction.
We can claim the virus hasn’t been isolated, or that if it exists it is harmless. We can argue that healthy people should avoid the drugs. We can, and should, emphasize that CD4 counts and viral load marker tests are imperfect and are not sufficient reasons alone for making medical choices. They are but pieces of a puzzle… and probably warning signs that warrant further attention.
However, as a publicly identified, out gay man who has spent nearly all of my adult life trying to create positive social and legal changes for gay and lesbian people, I cannot in good conscience support a movement that crosses the line into incredibility, irresponsibility and yes, denialism, by dismissing all tests as “meaningless” and advising people at risk of immune collapse to ignore their results. I cannot support that, and I will continue to challenge that practice publicly. Such over-simplification is as dangerous for gay men at risk as following the advice of the HIV specialists.
[captionpix align=”right” theme=”photo” width=”250″ imgsrc=”http://www.resistanceisfruitful.com/wp-content/uploads/2012/04/leg2.jpg” captiontext=”After four DVT blood clots in as many years, I’m resigned to taking the pharmaceutical ‘rat poison’ called warfarin because nothing else seems to prevent them.”]I may eventually be proven wrong about the significance of declining trends and extremely low t-cell counts, but dissident science has not yet built a good enough case for dismissing them out-of-hand. The risk is too great. We’ve both lost too many friends and loved ones to not want to know what is and is not good advice regarding our health. As long as there is doubt, I choose to err on the side of caution.
I resent being accused of being in “the AIDS zone” by prominent AIDS Rethinkers simply because they have failed to convince me to embrace their own speculative declarations that these markers are meaningless. Their arguments are no more plausible than the orthodox mainstream’s explanations, as far as I’m concerned. They are no longer skeptics, questioners, or even Rethinkers; they have become dogmatists in their own right. I am particularly appalled and distressed that the arguably preeminent dissident organization, Rethinking AIDS, seems to support this message via its president and spokespeople.
I have spent much of my life trying to find “the truth”, like some narrow, winding path through a very dense forest. I do not claim to have found it. What I have seen is evidence that the most obvious paths advertised by both sides of this dispute often end up going over a cliff. What I am absolutely convinced of is that the markers I’ve shared are a warning sign I dare not ignore. You can disagree with that conclusion. You can grill me about being obsessive… or hypochondriac. I may be both. But I am not a denialist fool, and I intend to do whatever is required of me to live quite a while longer. If the path I choose ends up sending me over a cliff, you and others will have a wealth of documentation to analyze my decisions after I am gone.
[captionpix align=”left” theme=”photo” width=”250″ imgsrc=”http://www.resistanceisfruitful.com/wp-content/uploads/2012/04/SumoJon-01_30_05.jpg” captiontext=”Though I call this photo ‘Crix belly’, it was taken years after I quit the ARVs, and I was never on Crixivan.”]As long as I’m alive, however, let’s keep the conversation and discussion going. I have come to admire your work and your own path through all of this madness. I think we have much in common with our backgrounds and experiences, though it’s also apparent that there are areas where our experiences and our opinions are probably quite different. Hopefully the common ground we share is sufficient to overcome any differences between us.
There are questions we all need to address if we are going to solve this mystery. We cannot count on our government, or orthodox scientists alone. We also need to be vigilant and wary of those who are neither gay, nor Affected, who are leading the AIDS dissident cause and trying to speak for us. Pointing out what is wrong with the orthodox AIDS paradigm is not enough. Regardless of what you want to call “it”, something is disproportionately affecting gay men, and those of us who have peeked behind the curtain at those who are targeting us need to be the voices and faces of the opposition. I am sickened by the subtle and not-so-subtle homophobia and racism I observe in too many corners of the leadership of this movement.
I fear AIDS dissidence is a train wreck waiting to happen, as assuredly as the AIDS orthodoxy is. One big difference is that the orthodoxy has the money, power and access to project a message that will get them off the hook in the public’s mind. AIDS dissidents, by becoming dogmatic without a credible countering hypothesis (The Perth Group excepted, in terms of having a hypothesis, anyway) will be left looking like the primitive denialists we are painted to be. To deny that illness exists; to suggest that there are no tests that can provide some measure of probability (as opposed to infallibility); and to refuse to explore and expose the evidence that hazardous, risky behavior common to too many of us gay men contributes to chronic illness is madness. Why do so many Affected gay AIDS dissidents find it easier to be an ostrich, than to take the initiative to try to examine the real underlying causes of illness? Could it be a fear of being accused of being obsessive and hypochondriacs?
All my best,