THE BONUS ROUND PRESENTSDickie's Personal HIV Theory.
Presented in 4 parts.
by Dick Remley, every doctor's nightmare:
A PATIENT WITH AN INFORMED OPINION
PART ONE: A BRIEF HISTORY OF THE THEORY
My theory has its earliest roots in the days when I was coming down with a mysterious series of symptoms and illnesses that could not be explained by my doctors. (The starting time frame would have been late 1980 through late 1982.) All attempts at diagnoses proved to be dead-ends. Through a process of elimination, it appeared that my condition shared many of the characteristics of autoimmune diseases like Lupus, although all autoimmune diseases known at the time had been ruled out diagnostically. Still, I felt my symptoms were immune-based, and probably involved some sort of autoimmune process.
Several years later, I would come to be the co-facilitator of an AIDS support group that was very large, and was attended by many people who were very savvy both medically and pharmaceutically. Facilitating that group also brought me into contact with many providers of services to people with HIV / AIDS, and eventually earned me the label of being an "AIDS Activist", although that was never my intention. I was just trying to survive and to help others. (The term "activist" always held a much more political connotation for me.)
Beyond all of the above, you should know that I was raised a small-town-boy in a forested environment. My observation of nature had taught me that any organism that rapidly and aggressively destroys the environment it requires for life, soon becomes extinct. Also, it seemed to me to be generally true that organisms that produce many multiples of offspring rapidly, do so because the individual offspring have a poor chance of survival. This led to the simple idea that HIV was NOT very effectively infecting its environment; and that some other mechanism must be at work to enable HIV to eventually cause the death of the patient.
The THEORY has some foundation in my own philosophical approach to people: namely that, if a person is ill, it is NOT because there is something "wrong" with them. Stated this way, it seems fairly easy to see, but the following dialog illustrates the principle:
PATIENT: "Doctor, what's wrong with me?"
DOCTOR: "You have AIDS."
PATIENT: "I'd like a second opinion."
DOCTOR: "Okay: You're ugly, too!"
It's an old joke, I know; but it illustrates a certain point. When someone (including ourselves) is sick, we tend to ask: "What is wrong with them?" It's somewhat ingrained in us to look for what is wrong with people. I'm as guilty of it as anyone else. When examining a new disease like AIDS, it is very easy to ask: "What is wrong with these patients?" But if that is your starting point, then you might easily find yourself looking for flaws in the patient that are not there.
The assumption was quickly made that HIV "destroys" the immune system; and that "what is wrong" with AIDS patients is that their immune systems have been crippled. Many - if not most - people assumed that the disease was gradually "wearing out" the immune system; and that people who had been infected for a long time had hopelessly lost their immunities.
But, I asked it the other way around: What if there is NOTHING wrong with the patient? What if the patient's immune system is properly responding to an improper signal (or NOT responding to a LACK of a proper signal) from HIV-infected cells? It threw a different light on the issue, and suggested different avenues to investigate. Moreover, it suggested that chronically infected individuals COULD respond to treatment, and should not be given up for lost. All-in-all, it seemed a more positive approach, and it appealed to me.
After some time observing the pattern of HIV in others, I decided I wanted to try to find ONE known disease or condition that could explain all of what we were seeing. This necessitated the reading (and deciphering) of medical texts and reference books which, in turn, required accumulating SOME knowledge of microbiology.
I want to make it clear that I am NOT a doctor, med student or scientist. I DO want to stress that my knowledge in these areas is incomplete.
I eventually came to the conclusion that the only known condition that was likely to explain most of what we see in the development of AIDS was something called "Polyglandular Deficiency Syndrome"; which, it turned out, is an autoimmune disease.
Polyglandular Deficiency Syndrome is actually not one single condition, but a whole constellation of potential manifestations of disorders that can occur when the body's endocrine (or glandular) system is mistakenly attacked by the immune system. Further investigation convinced me that such a condition - if it played a role in AIDS - had to be occurring at the level of the adrenal glands or higher.
The adrenal glands produce a substance called "cortisol" that has a role in regulating inflammatory processes. I concluded that, if the adrenals were malfunctioning as a result of an autoimmune attack, then the cortisol levels in the body might be too low. (WARNING! This has NOT proved to be the case!)
To understand the next part of this tale, you have to understand the general atmosphere surrounding AIDS back in those days, and what we, as AIDS patients were facing. There was no effective treatment for HIV back then. An AIDS diagnosis was almost certainly a one-way ticket to an ugly death. There were ideas and theories floating around, some of which were well-grounded in fact, and some of which were truly idiotic. Some of the more well-grounded theories were not being investigated, mostly because they were not "fundable". (That is to say, nobody was going to make money off any discoveries that came from investigating them.)
And, some people that I loved very much were dying.
So, knowing that I had a little bit of knowledge that would help me sort out the science from the fiction, I decided to use myself as the guinea pig in a series of experiments designed to test out some of these theories. (What can I say? Love makes you do strange things.)
I won't go into all the experimentation, but I decided to try out the "adrenally-induced low cortisol" theory by supplementing my own cortisol levels. However, just before starting the experiment, evidence emerged that persons infected with HIV actually develop cortisol levels that are too HIGH, so I aborted the experiment. (Many thanks to Dr. Don Kotler.)
I decided to attack the endocrine theory from another direction: If the adrenals are being caused to malfunction in some way, is it because of a direct attack on the adrenals by the HIV virus; or is there an autoimmune process that is causing this malfunction? I looked into the possibility that the body was being "misled" into attacking itself due to false signals being sent by HIV infected cells.
This led me back into microbiology, and the emerging importance of cytokines in cellular communication. Cytokines are bits of proteins that are used as signaling devices between cells. It seemed likely to me that, if the cells of the immune system were attacking the wrong tissues, then cytokines must somehow be involved. If this was a condition that developed as a result of cellular infection by HIV, then, more than simply infecting a cell and highjacking its reproductive system, HIV must be highjacking the cellular communication system as well. This idea, coupled with the observation that HIV infection commonly takes several years to produce clinical disease, led to the theory that T-cell decline and the failure of the body to ultimately control infection was being caused by modifications the virus was making in the cellular communication network.
These ideas taken together led to the creation of The THEORY. (Throughout this dissertation, I am putting the term "theory" in capital letters when referring to my own theory, so as to distinguish it from the theories of others. I suppose I could have just given The THEORY a name - something like "The Dickie Theory" or the "More-Positive-Way-Of-Looking-At-It Theory" or some such nonsense; but capitalizing it seemed simpler, and only slightly less pompous than naming it after myself. It's not meant to be pompous, however. It is merely meant to differentiate it.)
Almost none of the individual ideas in The THEORY are entirely my own creation. I have borrowed heavily from many other sources. The THEORY is, rather, a quilt-work of ideas that form a thematic whole.
My purpose in presenting The THEORY here is to follow the pathway down which a slightly different point of view might lead us.
The THEORY is not intended to be the one-and-only Truth, and should not be regarded as such. It is simply an exercise in listening to a different drumbeat, so to speak.
In an attempt to make The THEORY more readable and more easily understood, I intend to present it in three progressively more detailed and complex formats, which should be read in sequence.
First, we will take "THE NICKEL TOUR" of The THEORY.
Following that will be a very complex discussion of the possible microbiological mechanisms involved. That discussion will be referred to as "THE FULL MONTY".
Bear in mind that each discussion becomes progressively more technical, and each question, as is the want of questions, raises yet more questions.
Also bear in mind that I do not insist that each and every individual element of The THEORY is absolutely correct. In fact, I will pretty much guarantee that parts of it will be proven wrong. But, as a working model to try and predict the behavior of HIV disease, it has worked fairly well in the past; and can hopefully be useful as a starting point for more accurate and comprehensive theories.
ON TO The NICKEL TOUR.
A DISCLAIMER FROM STEVE SCHALCHLIN: Dickie is my friend in Los Angeles who was infected with HIV in 1981. He's been through more near death experiences than anyone I know, including a recent two month delirium where his liver was failing and he was dying. But through a careful balance of some drugs that alternatively dehydrate and then rehydrate him, he is alive yet again.
Dickie, after he got sick, began reading books on microbiology. And when we met earlier this year, he used to sit for hours and just explain for me microbiology and all the sites on the cells and what proteins do, etc. He kept telling me about his theory about the immune system. He had it well thought out and, as far as he could tell, it -- THE THEORY -- can account for all the phenomena that has occurred so far in the strange tale of HIV.
This does not mean he is right. His theory is untested. It is ONLY theory. It came to him as he read book after book on microbiology, so it could be a naive theory or it could be one of a billion theories. So why have I invited him to be a Bonus Round site?
Because when he's hot on the trail of new information and when ideas are popping in his head; when he's making new discoveries through the books and published studies, I see him come back to life the same way Jimmy saw my songs bringing me back to life.
There are scientists who read my page, you know. Even if his theory doesn't pan out, I will learn a lot about my own body and about the thing that almost killed me. (cue song: "at least i know what's killing me").
Dickie is not a doctor nor does he work in the medical field.
He's a Patient. *cue the mannix theme*
So, the reader should note that THIS IS ONLY A THEORY we are using as a jumping off point to ask questions and learn more about HIV and the immune system.
WE ARE NOT SUGGESTING ANY PATIENT TRY ANY METHOD OF TREATMENT WHICH MIGHT BE SUGGESTED OR INFERRED. WE ARE NOT RESPONSIBLE FOR YOU IF YOU DO SOMETHING STUPID -- LIKE TRY ANY TREATMENT WITHOUT THE FULL CONSENT OF A LICENSED MEDICAL DOCTOR.
Tell us what you think. -- The Bonus Round Management. :-)
© 1998 by Richard Remley (deceased)
| A Brief History of the THEORY
| The NICKEL Tour | The
DIME Tour |