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:
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 Alzheimer’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 Alzheimers 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.
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?