I recently unboxed some of the early media accounts of my life as an openly gay AIDS activist in Kansas City.  The very first words in the very first article ever written about me as an activist proclaim:  “Jon D. Barnett is an angry young man.”

That anger served me well as fuel for many years of social activism, though it ultimately took a toll in burnout and poor health.

Nearly ten years later, when I was diagnosed as HIV-positive, my world tail-spinned and I withdrew socially for nearly a decade.  The anger that once drove me was now directed internally against an invisible—and supposedly invincible—enemy.

It was only after the life-changing experience of quitting all pharmaceutical drugs in 2007 that I began to work my way out of my drug induced, self-imposed exile.

While questioning the wisdom of committing to a lifetime of AIDS drugs may be controversial, it is not crazy and there is definitely no malicious intent in telling my story.  I simply cannot have the life experiences I have had and keep them to myself.

One would think from some of the reactions I’ve gotten from readers, viewers and even personal friends lately that I am trying to hurt people, though nothing could be further from the truth.

A couple of weeks ago, as I sat across the table from a friend I’ve known for decades, I felt his hurt and his anger as he challenged me for suggesting that it may not be necessary for everyone to take ARVs for life to survive a positive HIV diagnosis. There is more to his story. His partner had just been brought back from the brink of death a few months ago after starting HAART.  He was a real-life example of the “Lazarus” effect.

Never mind that it takes HIV ten years or more to cause symptoms, ARVs are credited with restoring health in just a few months! I did not have adequate answers for all of my friends’ questions, nor did I feel that was my job.  What was important was that we discovered that we shared many of the same questions, though getting there took quite a bit of effort to overcome the misdirected anger and hurt first.

On my youtube page I have posted a video about the LOTTI study, which found that many positive people can successfully quit their drugs for long periods of time, and possibly even permanently. (I also blogged about the LOTTI study here). The video has received comments from some people involved in “AIDS education”, including a poz man from Portland, Oregon.

In a comment he has since deleted, youtuber gbfowler was apparently frightened enough by the notion of some people choosing to try a drug-free alternative path to recover their health that he felt compelled to counter the message of hope I had presented, warning others who might stumble upon the video that my views are “extreme” and that “99 percent of HIV docs and researchers disagree with [me].”  Of course, he is right on both accounts, but the question begs:  why did he feel it was so important to warn others of the obvious?

Yes, it made me angry that someone who makes their living pushing drugs onto other gay men would express only fear about any scientific information that offers hope to tens of thousands of gay men—many of them otherwise healthy—who are facing, or have already embraced a lifetime of chemotherapy.

Talk about extreme and dangerous ideas!

The gay community has developed a myopic view of AIDS in the last few decades, thanks in no small part to massive, well-funded marketing and “education” campaigns designed to convince us that we must give up natural sexual intimacy and instead embark on a lifetime of chemotherapy.  Self-funded, actually, as the  largest non-governmental supporters of most AIDS organizations in the U.S.—pharmaceutical companies—invest in these (marketing) agencies with their profits from AIDS patients, the vast majority of whom are gay men.

Why in the world would I want to challenge this image of the modern pill-popping, disease ridden, latex wrapped gay man?! (sarcasm, for those who need to be told).

Talking to a television reporting at an ACT UP/KC demonstration outside the FDA, demanding faster access to AIDS drugs, circa 1989.

Despite what some gay men seem to think, I am not the enemy and if my story or my writing makes some of you feel that I am, it may be a good indication that our communal psyche has been fucked with.  I have a long history of fighting for my community. I will continue to fight for gay men until they put my ashes in the ground, which I hope will be a few more decades yet.

There was a time when I organized die-ins to demand faster access to unproven drugs.  I picketed the Circle K convenience store that denied health insurance to a PWA—by myself—before founding ACT UP in Kansas City. I ran the first campaign as an openly gay candidate for city council.  I co-founded the organization that worked to pass a gay rights law in Kansas City, served as regional editor of one of the largest lesbian and gay news publications in the Midwest, and have received recognition for leadership in my community.

I realize that all of this must sound boastful, and yes, I am proud of my life and my accomplishments.  My point though is that I have a lifetime record of promoting and advancing the gay community, not hurting it.

Covering an ACT UP demonstration for the News-Telegraph, a regional gay newspaper,  in the early 1990s.

I have paid my dues and I have earned my props.  I am not only entitled to share what I’ve discovered since my own HIV-diagnosis in 1998, I am obligated to do so.  I have faced down threats to my safety, to my livelihood and to my health.

I am appalled and distressed by the lemming-like behavior of my own community and wonder why and when did we stop challenging the establishment?  I do not stand in judgment of others, because it is obvious I have been a lemming in the past too.

I will spend the next stage of my life trying to advance a new message to the gay community.  We cannot accept the current terms of the Final Solution, as spelled out by one of the largest segments of the U.S. economy—the pharmaceutical industry and its allies in government and social agencies.

Are we really for sale so cheaply?

I am constantly rethinking my views and my beliefs, and I assume others do so as well. When I was a  teenager, I had a religious experience in the Jesus movement commonly referred to as “born again.” When I came out of the closet as a gay man a few years later, I was born again. Again. Since then I have been reborn more times—mentally, spiritually and emotionally—than I can count, and I hope I continue to be open-minded to new ideas and ways of thinking and believing.

I did not come to this place called AIDS dissidence easily or smoothly.  It is not a particularly fun or easy place to be.  It is not even really a place at all.  It is more like an anti-place… a not-place to be.  It is all of the space that exists outside of the AIDS meme.  (Note:  the link may be irreverent, but it does a good job of capturing just a few of the reasons I refer to a “meme” here.)

Lately I find myself struggling to find ways to break through the (fear of) death culture that has snared the gay community the last few decades. Not since I was a teenager have I felt so alone and lonely in how I think and how I feel. Unlike those years, thanks to the Internet I have managed to make contact with a handful of gay men who walk a similar path.

The anger in my life has never completely subsided, it has just morphed into a different form of energy as I’ve learned to co-exist with it in ways that do not consume me.  I hope I have learned to conserve my energy and to focus it more intensely where it is needed, as I no longer wish to be a flamethrower, preferring to strive instead to be a torch.

That some people find my words and my work to be dangerous and threatening is reason enough for me to keep thinking and writing and speaking out. I am not trying to burn down the house; I am trying to cut the lock off the prison door.

Startling similarities when comparing micrographs of budding HIV and budding HERVs.

Could it be that we are getting closer to a (more) unified alternative explanation for what causes “AIDS”?  There are several recently published articles, as well as conversations between the authors, that just may prove to be the impetus for such a epiphany.

This is not about some startling new discovery.  It is the work of lay people wading through the scientific literature and gleaning and assembling already documented knowledge and information in ways that most orthodox scientists simply seem incapable of doing.

Most recently, Liam Scheff has published another great piece of writing, How AIDS Didn’t Become a Kissing Disease, which further challenges the mainstream explanation for AIDS.

In the article, Scheff presents official government definitions for what retroviruses are as he wanders through the history of “HIV”.  He notes  Matthew Gonda’s discovery of “HIV” in the saliva of healthy and ill gay men in the 1980s, though no self-respecting AIDS risk reduction educator today would suggest that HIV can be transmitted by kissing or even oral sex.  Gonda incidentally co-authored scientific articles with the now discredited discoverer of HTLVIII/LAV/HIV, Robert Gallo.

The article concludes that what Gallo and others were seeing are actually Human endogenous retroviruses, or HERVs; self-made cellular messengers that our bodies create in reaction to stressors and toxins, the same way scientists create them in the lab.  Scheff suggests that nutritional responses can suppress the expression of HERVs.

Other writers have written about issues of gut dysfunction and exposure to toxins that are entirely compatible with the theory that HIV is a HERV.  What remains to be done, in my personal opinion, is to tie these various perspectives together and to present a unified alternative theory of AIDS that can be understood by a fifth grader.

Until that happens, those readers who are struggling to understand the significance of a positive test result owe it to themselves to read the collection of writings by Schell and Cal Crilly at reducetheburden.org, as well as the essential and related information contained in Tony Lance’s paper, Gay Related Intestinal Dysbiosis.  It really isn’t that difficult to make the connections for oneself, but it does take some time and effort and for most people, it also requires some de-programming to allow the mind to accept new information.

As an Affected gay man, I struggle mightily to explain what I’ve learned to friends and others who find themselves in a similar situation.  That job is nigh-impossible as long as people remain uninformed and in the dark.  When I worked for the New-Telegraph in the 1980s and 1990s, the masthead read:  “Knowledge is Power”.  Nothing could be truer today.

ubiquitous western kansas steel grain storage bin

Anyone who has lived or grown up on or near a farm in the midwest, will no doubt recognize one of these steel grain storage bins. They come in various sizes and are used to store grain destined for an area storage elevator or feed for livestock.

We had several of these bins at various locations on our communal farmstead, three miles north of Colby, Kansas.  There were cousins and siblings within a few years of my age who lived nearby and we would seek out ways to keep ourselves entertained, though not all of our childhood games are fit for public consumption.

The grain bin located nearest our home was unique.  For one thing, it rarely had any grain in it, but what really made this particular grain bin different was its floor… or rather the lack of a conventional flat pad floor.

This bin was set on a concrete lined, cone shaped hole in the ground.  I guess the purpose of this pit was to increase the amount of storage space, as well as to direct the grain to the smaller bottom of  the pit for easier removal by a grain auger.  The tapered sides of the pit would cause the grain to naturally flow to the bottom where the intake end of the auger would suck it up and dump it into an awaiting truck.

the pit looked something like this

The Pit, as we called it, became our very own amusement park ride.  Farm kids are easily entertained, I suppose, but our townie friends were also impressed with it whenever they came to visit or  sleepover.  Townie kids are generally not easy to impress.

We would show one of them this rather intimidating hole in the ground and boast to them that we knew how to get down to the bottom and back up without skinning our elbows or tearing holes in our jeans.  The bottom of the pit was probably 10 feet deep and the sides were sloped like a funnel.  It seemed obvious that there was no way anyone could climb down and back up without assistance or a rope.

I no longer remember who taught me the “secret path” to conquering gravity and The Pit.  All I recall now is that you had to propel yourself from the grain bin door and run like mad around the circumference of the upper level of the pit.

This was my introduction to the useful power of centrifugal force (or was that centripetal force?) to counter the force of gravity.  The faster one ran, the higher one could stay at the top of the cone shaped pit.  Slow down, and your 70 or 80 pound body would gradually move down the sides, until eventually you found yourself at he bottom of the pit!

Find equilibrium and you could circle the pit indefinitely, or so it seemed.

centrifugal force at work on a race track

One can see the same forces of gravity and centrifugal forces at play when watching race cars or motor cycles zoom around the banked curves at the track.  Too fast and they will fly over the top.  Too slow and they end up at the bottom of the slope.

To escape The Pit, all you had to do was start running in circles until you achieved sufficient speed to find yourself being literally pushed back to the top of The Pit.

Put two or more kids screaming with excitement and adventure inside that enclosed metal bin and you had a ride that was tough to top, at least it was until we finally discovered Elitch’s amusement park in Denver a few years later.

Playing in The Pit was just a game when I was a kid.  What I didn’t know then was how that playtime would yield some important lessons about life for my future.

The force and energy generated by movement can keep a person, or idea, or group in a place that defies forces that would otherwise bring them/it down.  Control over that movement can be used to move the person or the group to the open door at the top of The Pit, or bring them to a soft landing at the bottom.  Neither of those places are inherently good or bad, they just are and there are things to do at either place.  What is important to learn is how to control one’s own motion so that you end up where you want to be to do the important work you have to do.

I had to leave the analogy of The Pit to refine this newly learned concept and discover that lethargy and lack of movement ultimately results in inertia:  moving neither forward nor backward, and accomplishing little to nothing.  On the other hand, hyperactivity can result in overshooting the upper rim of the pit, expelling oneself like a rocket, only to land in a crumpled heap some distance away from the objective, covered in skinned elbows if lucky, and broken bones or worse if not so lucky.

These childhood lessons are coming back into my conscience as I struggle to find my equilibrium again.  A few years ago I had lost momentum and found myself slumped at the bottom of The Pit.  In the past year I have increasing gotten involved with tasks and projects that started out as rewarding efforts, but lately have seemed to require me to run faster and faster until I have thrown myself out of the pit and I can feel the effect of the subsequent energies.

Life is clearly not finished with teaching me important lessons.

My partner Michael is taking a class to get his EMS (Emergency Medical Services) certificate. One of the course requirements is that he get a series of Hepatitis B vaccinations.

Because we were concerned that this or one of the other mandatory vaccinations could result in a falsely positive reaction to the Gallo antibody test result (aka HIV test) in the future, Michael made the difficult decision to have that test done before getting any vaccinations.

Michael has not tested in many years and until now has always tested negative when he did.  If his status were to suddenly change after a Hep B vaccination, he wanted to have as reasonable a point of reference as is possible with these flaky and poly-reactive tests.

The medical staff at the suburban clinic he goes to actually tried to discourage Michael from HIV testing, despite knowing he is gay and has been in a long term relationship with a poz man.

The reasons the medical staff gave to not take a HIV test? First, it wasn’t included on the school’s list of required tests and vaccinations and secondly, they cautioned him that a positive result could cause him a lot of problems with his insurance and employment!

Concerns about the possibility of a cross-reaction due to the vaccinations if he was ever tested later in life were summarily dismissed.

When the clinic finally accepted the fact that Michael still wanted the test done, they first made him read and sign several papers, including a 2-page “patient consent form”, initialing 14 points.

Here are the first two points in that form, posed as questions & answers:

WHAT IS AIDS?
Acquired Immune Deficiency Syndrome (AIDS) is caused by a virus(HIV) that destroys the body’s ability to fight infection.

WHAT IS HIV?
HIV is a virus which is the cause of the Acquired Immune Deficiency Syndrome (AIDS).

There is no reason to go further down the list of points in the informed consent form because one cannot escape the circular reasoning of the answers to the first two questions that are the basis for everything that follows.

Circular reasoning is an attempt to support a statement by simply repeating the statement in different or stronger terms.  In this fallacy, the reason given is nothing more than a restatement of the conclusion that poses as the reason for the conclusion.  To say, “You should exercise because it’s good for you” is really saying, “You should exercise because you should exercise.”

It shares much with the false authority fallacy because we accept these statements based solely on the fact that someone else claims it to be so.  Often, we feel we can trust another person so much that we often accept his claims without testing the logic.  This is called blind trust, and it is very dangerous.  We might as well just talk in circles.

None of this is new information to most of us who have been questioning the HIV/AIDS paradigm for any length of time, but I was surprised nonetheless that the AIDS orthodoxy hasn’t done a better job of covering their tracks for sloppy science from the very beginning.  After all, BigPharma’s army of drug pushing sales representatives taking up valuable space in these clinics’ waiting rooms and the doctors’ schedules could be mobilized to provide some straight answers.

If there had any.

You could no longer climb the stairs in your home without dropping to your hands and knees, and could only come back down by crawling backwards?

Do you remember the times you came out of unconsciousness to see the faces of friends and loved ones hovering over you with concern… no, panic in their eyes because you had dropped to the ground, started trembling and speaking in tongues, and your eyeballs rolled up in your head until only the whites of your eyes were visible?  Worse yet was the time you came to, laying in a snow bank in the back yard, staring at the stars in the night sky, with no one else around at all.  You had seized on your way in from the garage.

How can you forget the strange look in people’s faces as you sss—tt—u—tt—ered every word to the point that you were nearly unintelligible?  Other times you struggled to find even the simplest word to express your needs.

You must remember how your hands were unable to guide a fork or a spoon to your mouth as you ate and food ended up on your cheek, or up your nose instead? When they weren’t misguiding your food, your hands would simply rest on the edge of the table and tremble.

Remember the overwhelming sense of panic you would experience upon entering the brightly lit and noisy Costco store?  Sensory overload you called it.  Or “rockin’ and rollin’”.  You wouldn’t stay long at the family holiday gathering either, for fear of stepping on, or tripping over noisy, distracting kids.

Congnitive dysfunction, you were told.  Neurological problems. Advanced aging.  Multiple autoimmune disorder syndrome (MAS, but you called it MAD). These were just some of the general diagnoses you got from medical specialists across the country, from San Francisco to Denver to Chicago and back home to Kansas City.

You only now remember some things about those times, though details are still often difficult to recall. Fortunately, you kept most of your records, though their organization leaves much to be desired.

The neuro-psychiatrist in Chicago ordered an MRI of your brain in April, 2006:

IMPRESSION:

1. There is slight generalized atrophy with nonspecific periventricular signal alteration. The signal can certainly be related to HIV or perhaps CMV. PML can give this appearance as well. There are no obvious enhancing mass lesions of any sort. (emphasis added)

2. There are inflammatory changes in the left maxillary antrum.

“AIDS-related dementia”, the shrink told you, just because one day you tested positive on an antibody test developed using fraudulent research by the now-discredited Dr. Robert Gallo.  A test that can return a positive result for dozens of other reasons.  A test developed from the cellular debris of hundreds of unhealthy gay men in the 1980s, most of whom did not even have symptoms of AIDS.  A test that went through a process that might be compared to making sausage and then sending it to a dry cleaner for a chemical bath.

(Note: the past is written third person for a reason, but now that we’re back in real time I’m going to switch back to first person.)

If my diagnosis of probable early stage HIV-associated dementia in April 2006 was correct, there is no way in hell I would be writing this today.  That’s just not how progressive dementia manifests itself, whether it is HAD, or PML (a lovely condition, google it) or Altzheimer’s.  It’s progressive… that means it gets worse, not better.

These various explanations were given to me by the same physicians who prescribed the two dozen pharmaceutical drugs I took in 2006.  Every one of them received a copy of my then-current med list.  (Regular readers know that I quit all pharmaceutical drugs in 2007 and now take only 1 or two prescription drugs required to manage recurrent DVT blood clots until I find a better solution.)

Now a study from Wash U in Saint Louis and UC San Diego admits that AIDS drugs must be responsible for the “premature aging” of brains in “HIV-positive” patients. Despite this likely cause, study authors perform contortions to try to blame the virus instead.

For one thing, despite this being a study of “long term” effects, which surely means that most of the patients must be on some form of antiretroviral therapy and probably dozens of other drugs for side effects and other symptoms, the authors never specifically address the numbers of patients taking drugs.

Secondly, they dismiss the use of traditional, and therefore comparative means of measuring cognitive function used for Altzheimers studies, claiming that HIV-populations are poorer, have less time on their hands (or brains), and the lack of testing sites.

Huh?  OK. Whatever.

Instead they perform advanced MRI scans on patients brains to study blood flow.  Now, that’s got to save some money, right?

The researchers go on to perpetuate a myth (which is what I call a debunked theory) that the HI virus crosses the blood brain barrier and pisses on the machinery there because the ARVs can’t follow it.

Another report on these symptoms of advanced aging in poz people, published a few months ago in New York magazine, was more honest:

But in many cases of dementia, there are no signs of viral activity around the brain, suggesting other factors may be at play. At the Manhattan HIV Brain Bank at Mount Sinai, researchers have dissected the skull contents of 250 volunteers who agreed to a series of psychological interviews and neurological exams, then promised to hand over their brains at death. (One is the gift of Fred Gormley, a felicitous writer who toiled with me years ago at the now-defunct New York Native; he wrote about his life as a brain donor before his death from AIDS complications in 2002.) According to Dr. Susan Morgello, who directs the lab, most people who showed signs of dementia while alive do not have evidence of HIV in their autopsied brain. What they do have in common, she says, is evidence of persistent inflammation, which alone could account for the cognitive damage.

(Read more: Why a Number of HIV Patients Are Aging Faster — New York Magazine http://nymag.com/health/features/61740/index3.html#ixzz0dNXmDa8o)

So what else might explain the symptoms of advanced aging?  “The inflammation might be caused as much by the patient’s emotional and psychiatric burden as the virus’s pathological course,” says Dr. Susan Morgello, director of the above mentioned brain bank.

Sounds reasonable to me.  I’m a big believer that the cause of most illness and disease is multi-factoral. Looking for a single causative agent can be counterproductive.

How are the effects of environmental toxins factored into this research?

Better yet, what about the effect of pharmaceutical drugs?  More than any other factor, this is the most probable common denominator for people with AIDS and other chronic diseases. Similar brain aberrations are also common in patients with lupus, MS and other auto-immune disorders.

Most problems caused by medication are cumulative.  People can generally handle a week or two of antibiotic treatment and either avoid serious effects, or quickly rebound from them, for example. The fast pace of drug development demanded by AIDS activists (including me) in the 1980s means long term trials have never been conducted and we are only now seeing some of the worst, cumulative effects and interactions.

Regrettably, AIDS research is so entrenched in the theory of HIV causation and the notion that ARVs can control viral replication that other possible (and rather obvious) causes of symptoms are not even examined.

I opened this post with some descriptions of my life a few years ago.  Today I walk without a cane; speak fluently; haven’t fallen since 2008; have had no seizures since 2007; and you would not be embarrassed to sit across the table from me while we ate a meal.  I still avoid Costco, but not just because of the bright lights.

I do not claim to be totally free of health problems.  I still experience considerable fatigue, for example, and have a nasty habit of throwing blood clots in my left leg. Considering the likely damage of several years of pharmaceutical abuse, I’m lucky I don’t have worse problems I suppose.

One person’s experience does not make for a clinical trial, but it shouldn’t be ignored either, and there are others who can testify to similar experiences.  Nor is it just about HIV and AIDS research. I remember sharing an IV infusion (vitamins and nutrients) room with a woman several years my senior who has successfully treated her cancer for decades without chemo or radiation.  It does happen.

A sneaky, mutating virus that can evade the electron microscope was not the cause of my cognitive and neurological problems.  Those problems started after I began taking a lot of prescription drugs and greatly resolved after I quit them.

Anyone care to study that proposition?

Wastebasket full of meds

Start memorizing this acronym: LOTTI. It could change your life if you are on one of the AIDS drug cocktails, also known as HAART (highly active anti-retroviral therapy).

LOTTI stands for the LOng Term Treatment Interruption study, which recently reported that those of us who have had success with “treatment interruption” might not be all that unusual.

Although some results from the LOTTI study were first reported back in November, 2008, the complete report wasn’t published in the journal AIDS until April and didn’t hit my radar screen until this month, when it was finally published on Medscape.  In an industry that often falls over itself rushing to trumpet breaking news to the media, this sluggishness to report good news (for people on HAART, if not the pharmaceutical industry) is certainly suspect.

Good News! Drug vacations DO work!

The randomized, controlled, prospective  LOTTI study concludes that those patients who took vacations from their HAART drugs fared as well clinically as those who took their drug cocktail continuously. “The two strategies may be considered clinically equivalent,” stated the study’s authors. Even more importantly (though not emphasized in the report): more than a fourth of those who quit their cocktail of drugs never had to restart them, even though the mean length of time in the study was more than four years!

What is so exciting about this scientifically controlled study is that it offers hope to those who are currently taking anti-retroviral (ARV) drugs, but are concerned about long term effects, or are already experiencing illness because of toxicity. Based on the study’s results, there are not only no good reasons for HAART patients to stay on the drugs continuously and indefinitely, there are several advantages to stopping them:

• Reduced toxicity – Not surprising, the LOTTI trial found that those patients randomized to the  continuous HAART arm of the study experienced more cardiological problems due to the effects of drug toxicity. These problems are well known, and modern clinical practice is to attempt to “manage” them with… yep, more pharmaceutical products. Other known effects of continuous use of HAART include disfiguring body effects called lypodystrophy, liver disease, bone problems, aberrant blood levels such as lipids, enzymes and hormones, and more.
• Drug “resistance” – The boogeyman most frequently used to discourage patients from considering drug interruptions–was also higher in the continuous HAART cohort. Of those in the STI arm who developed resistance, all but one did so after viral suppression was achieved, and while on HAART. In other words, being off the drugs did not cause resistance, but being on them did! This contradicts the “common wisdom” pronounced by most HIV practitioners.
• CD4 counts – While about the same number of patients from each arm reached one of the primary end points (death or disease), those in the continuous arm had a mean CD4 count of 891, compared to 557 in the STI arm. So much for the protective power of higher CD4 counts.
• Cost effectiveness – Daily treatment cost for patients on STI was less than half that of the continuous HAART group. Cost alone should not be the determining factor in treatment, but there never seems to be enough money to fuel the AIDS machine, so this is an important finding.

Are Italians SMART(er)?

The largest study of STI, the SMART study, was sponsored by the U.S. National Institute of Allergy and Infectious Diseases (NIAID) and was terminated early, supposedly because early results showed virologic failure and deaths for those on STI’s. The design (and execution) of SMART has been challenged and the study may serve better as an indication of the tremendous influence of pharmaceutical interests on the U.S. health research industry than on STI itself. Current treatment guidelines are based on lifelong adherence to what might best  be described as chemotherapy.

LOTTI’s Italian researchers felt compelled to take on the SMART study as well, though they are far more diplomatic about it than I need to be, attributing the difference in results to their choice of higher CD4 counts to trigger treatment interruption and resumption.

Let’s talk about t-cells (CD4)

The issue of using CD4 markers to guide treatment is a problematic one, though it’s not likely to be replaced by researchers anytime soon. Based on personal experience, I would urge anyone considering a treatment interruption to be prepared to allow sufficient time for laboratory markers to stabilize. Some of us who have quit HAART have reported a sudden rise in the so-called “viral load”, as well as a dip in CD4 counts that reverses over time (probably months, not days or weeks). It can be very unnerving to watch this drop, especially when we’ve been conditioned to believe they are infallible indicators of health. They are not.

CD4 counts are notorious for their fluctuations and no decision should be made based on a single test result. It is not clear what the VL test is actually measuring, nor what the significance of CD4 count is in terms of general health. Any sudden changes in these numbers after quitting HAART may as easily be a marker of reaction to clearing toxicity from the ARV drugs as any indication of decline in immunity. After an initial bounce from quitting HAART, my counts have remained reasonably steady for the six years I’ve been off of the cocktails.

Secondly, it is important to keep CD4 counts in perspective. The “threshold” for illness is a moving target that lacks consensus from medical experts. It was considered to be 200 in the early years, then raised to 350, and now some are suggesting 500. There is no evidence that having a CD4 count of, say, 300 is, in and of itself, inherently dangerous. My CD4 count hasn’t been above 700 for six years. A typical range for me seems to be 250-500, and I’ve never had any AIDS-defining OIs, or other serious illnesses related to immune deficiency, but what is “normal” for these markers may vary considerably for different individuals. I admit I would be more concerned if my CD4 count was single digit, or perhaps even double digit for any length of time. On the other hand, the evidence for a strategy of striving to maintain a CD4 count of 700+ by subscribing to a lifetime of experimental drugs simply isn’t very well-founded, and is contraindicated, given the dangerous effects of those drugs.

Read my story surviving “aids” without drugs to learn more about my personal experience with quitting HAART.

Answers beget more questions

There are questions raised, but not answered by LOTTI. What about those people who have a “positive” test result, but who have not yet begun HAART? When I was diagnosed in 1998, the buzz phrase for HIV treatment was “hit it hard, hit it early”, in other words, take the drugs as soon as you know you’re poz. That strategy was quickly debunked when otherwise healthy patients got incredibly sick from the drugs. I know, I was one of the biggest advocates for drug treatment at the time. Recently, the AIDS/pharma media machine is once again churning out press releases and announcements pushing for “early intervention”, which is just a repeat of that earlier failed strategy.

I think the results from LOTTI can also be interpreted as supporting a choice to refrain from initiating HAART unless a combination of symptoms and very distressing laboratory markers suggest otherwise.

Why aren’t AIDS groups shouting LOTTI from the rooftops?

So, what is left of the rationale to support early intervention with continuous, lifelong HAART treatment? Why aren’t AIDS service organizations and advocacy groups promoting the information in the LOTTI study and calling for more research on ways to minimize HAART-related deaths and suffering?  Why aren’t doctors talking to their patients about this option?

You won’t hear or read a lot about the LOTTI study on those AIDS sites sponsored by pharmaceutical companies, like thebody, aidsmeds or poz.com, even though these same sites ran dozens of articles, commentary and opinion pieces about the less-promising SMART study.

That organizations supposedly run by and advocating for the well-being of HIV-positive people are withholding their enthusiasm and support for this study, while trumpeting the fear-based, trumped up charges about SMART is disgusting and disgraceful. It is behavior like this that makes dissidents like me suspicious that their dependence on pharmaceutical funding for their salaries and international travel to conventions must be clouding their thinking.

Just to be clear…

Does this mean I’m supporting HAART STIs? Not exactly. I stand by my personal position that well-informed patients should avoid such toxic therapy based solely on polyreactive tests, such as the “HIV test”, or based on questionable laboratory markers such as CD4 counts and “viral load”. That means not starting HAART in the first place, with possible extremely rare exceptions.

However, I know many people who are already on HAART and who believe they will do themselves harm, or perhaps die if they even consider quitting their HAART drugs, or take a vacation from them. I offer this scientific study as supportive evidence that they can consider taking a break from their drugs and see how they fare.

It would be a mistake for anyone to think or suggest that I advocate refusing drugs as a means to good health. That is far too simplistic. It is my experience and my suggestion to others that regaining good health requires a multi-factoral approach that involves recognition of our mind/body/spirit connections; attention to diet, lifestyle, and environment; and proactive strategies that emphasize genuine health, rather than just medical/pharmaceutical intervention.

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