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Alternatives?
#24618 - 11/14/01 11:00 AM
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Please pardon this simple question but what do you think about infos available at sites like http://www.aidsrealitycheck.org, http://www.actupsf.com/, http://www.healaids.com/ or http://aliveandwell.org/
Any truth to these sites? Who to believe: government sites or activist sites?
The more I research information about HIV and AIDS, the more complicated the relationship between the two seems to be and the more treatments there seems to exist with variable results depending on the patients.
Is it because HIV and AIDS have only been researched and studied for the last 20 years?
Thanks.
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Me Myself and I
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Great question. I've been researching both sides of the issue, and believe there is good and bad to both sides of the debate. You'll notice that this topic often hits a nerve on these boards, probably because of some of the more extreme "dissident" views.
First thing I must say is that I do not agree with any dissident who says that HIV is harmless or does not exist, or that condoms are useless. That's just nutty. HIV may only be a typical retrovirus, but it is definately harmful to the immune system by a process that is currently not well understood. Usually it is a slow process, but for some it is faster.
Also, any so-called cure, like an immune-boosting drink, etc. is most probably a scam. The immune system is too complex to be "boosted" by something like that. It requires maximum health in all organs and body systems, which is more than any one thing can do by itself.
On the other hand, I am in no hurry to take any of the toxic drugs currently offered by mainstream medicine either. They may be able to control HIV for some people, those who are able to tolerate them, but they are far from perfect. I would only start on meds if I was extremely immune suppressed, and had no choice but to control the HIV virus in order to rebuild my immune system. And even after that, I would look into possible methods of going off the meds again.
The reason some dissidents do make some sense, is the long asymptomatic period of HIV before AIDS develops. There are even a few long term slow progressors who live with HIV for a very long time without any HIV meds, and they don't develop AIDS and live a normal lifespan. This makes HIV appear to be something that can be lived with, and seemingly harmless at first glance. The dissident view gives much more hope and encouragement than the conventional HIV=AIDS=death-or-meds paradigm.
It also makes sense that each patient's medical needs should be assesed obvjectively, and they should not be pigeonholed into the HIV treatments for any health problem that comes along. The idea that a healthy lifestyle promotes health (more so than an unhealthy lifestyle) is pretty much universally accepted by both sides.
Even the mainstream agrees that it is up to the patient whether they want to start meds. The quality of life must be weighed against the potential harm from virus and/or toxicity of the meds. Either way it's a gamble, and there are no definite answers.
Does any one have any other ideas? I think the subject is very interesting.
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"Great question. I've been researching both sides of the issue, and believe there is good and bad to both sides of the debate. You'll notice that this topic often hits a nerve on these boards, probably because of some of the more extreme "dissident" views."
Hmmm... besides the conspiracy theorists, the 'dissident views' are merely dissenting from the dominant, conventional pharmaceutically based medical model. Alternative Medicine has long questioned the virus/germ theory. So, what about the opposing view about 'HIV=AIDS' do you find credable then? You didn't say. I have been researching this matter for a long time as well and come to the determination that the dissidents make more sense than the AIDS Apologists extreme views.
"First thing I must say is that I do not agree with any dissident who says that HIV is harmless or does not exist, or that condoms are useless. That's just nutty. HIV may only be a typical retrovirus, but it is definately harmful to the immune system by a process that is currently not well understood. Usually it is a slow process, but for some it is faster."
Hmmm... if it may be a typical retrovirus, then it wouldn't be slow and it wouldn't be harmful, but a harmless passenger virus, activated in the presense of immune dysfunction. So, again, what of the opposing view do you accept? Not clear at all.
"Also, any so-called cure, like an immune-boosting drink, etc. is most probably a scam. The immune system is too complex to be "boosted" by something like that. It requires maximum health in all organs and body systems, which is more than any one thing can do by itself."
I agree here, this is the view of most of Alternative Medicine as well as the 'nutty' Dissidents-- that immune dysfunction has many known causes and cures. Be weary of any cure-all pills or catch-all condition, of 29 previously known illnesses blamed on a passenger virus.
"On the other hand, I am in no hurry to take any of the toxic drugs currently offered by mainstream medicine either. They may be able to control HIV for some people, those who are able to tolerate them, but they are far from perfect. I would only start on meds if I was extremely immune suppressed, and had no choice but to control the HIV virus in order to rebuild my immune system. And even after that, I would look into possible methods of going off the meds again."
Well, I agree with you here to some extent, except that there is no phase three clinical trial showing a significant reduction in mobidity and mortality for any of the new "wonder drugs." One of the designers of PIs, David Rasnik, refuses to market them because he says they are not specific against the putative HI virus which has not fulfilled Koch's Postulates. In fact, the FDA does not license the HIV antibody tests for measurement or detection of actual infection with any virus.
"The reason some dissidents do make some sense, is the long asymptomatic period of HIV before AIDS develops. There are even a few long term slow progressors who live with HIV for a very long time without any HIV meds, and they don't develop AIDS and live a normal lifespan. This makes HIV appear to be something that can be lived with, and seemingly harmless at first glance. The dissident view gives much more hope and encouragement than the conventional HIV=AIDS=death-or-meds paradigm."
Well, okay. But why even give someone a test for a non-specific marker and diagnose them with a "virus" and to expect illness. That is voodoo medicine and creates psychological 'AIDS' or immune dysfunction.
"It also makes sense that each patient's medical needs should be assesed obvjectively, and they should not be pigeonholed into the HIV treatments for any health problem that comes along." You mean pigeonholed into an 'HIV' antibody misdiagnosis? An immune response generally means you are protected, not compromised.
"The idea that a healthy lifestyle promotes health (more so than an unhealthy lifestyle) is pretty much universally accepted by both sides."
And who disputes that? That's not what the controversy is about. It is about whether one should continue to take 'viral load' tests while the Nobel Laureate inventor of the PCR technology used is a Dissident Scientist, Kary Mullis, who says the test measures genetic fragments. And whether viral load tests have ever been done on 'HIV' antibody negative individuals to judge their efficacy. And whether T-cells are normal for Olympic athletes in the 200-400 range.
"Even the mainstream agrees that it is up to the patient whether they want to start meds. The quality of life must be weighed against the potential harm from virus and/or toxicity of the meds. Either way it's a gamble, and there are no definite answers."
But they do not inform the consent of the patient by giving them both sides of the issue. So, do you support the witholding of information from those who are treating patients? Cause that is what is happening.
"Does any one have any other ideas? I think the subject is very interesting."
It is more than interesting, it is potentially life-threatening or life-saving depending on who is right. That is why I demand that AIDS, Inc. INFORM CONSENT of their clients/consumers. What some do not consider is the gamble you are taking to bye into the AIDS myth. There is no conspiracy required for popular concensus to be wrong. The medical establishment thought Cancer was caused by a virus for 10 years until the father of Retrovirology, Peter Duesberg proved it was not. He is also the very same member of the National Academy of Sciences who began questioning the viral pathogenesis of 'HIV=AIDS.'
I went off my meds and live in health and love without fear of the phantom virus. I now believe it was the mindset SAME-SEXUAL=SIN=SICKNESS that lead to the unquestioned acceptance of the HIV=AIDS=DEATH mindset.
DISSIDENT and SAINT http://groups.yahoo.com/group/DissidentSaint
AIDS Dissident Scientific and Alternative Health Restoration Faith-based Social Action and Educational Exchange.
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Me myself and I
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Hello Kyle, and thanks for responding to my message with such detail. Since this is a treatment/alternatives forum, I hope our dialogue will not wonder too far off-topic. Also, I hope you understand that I do respect your opinion, and that I am not trying to debate with you, but only hope that our dialogue will be helpful to this forum.
Kyle: "Hmmm... besides the conspiracy theorists, the 'dissident views' are merely dissenting from the dominant, conventional pharmaceutically based medical model. Alternative Medicine has long questioned the virus/germ theory."
Me: Dissenting from the conventional medical model, and exploring alternative medicine is fine. Questioning the virus/germ theory is perhaps going too far. Would you say that measles is not caused by a virus?
"So, what about the opposing view about 'HIV=AIDS' do you find credable then? You didn't say."
I find some credability in the dissidents who seem to be the first people to realize that they could live with HIV for a relatively long time without going on anti-viral medication. Also the idea that you can treat the specific oppostunistic infection, without automatically resorting to drastic chemotherapy.
"I have been researching this matter for a long time as well and come to the determination that the dissidents make more sense than the AIDS Apologists extreme views."
As I said, I believe there is good and bad on both sides of the issue. I am somewhat in the middle.
"Hmmm... if it may be a typical retrovirus, then it wouldn't be slow and it wouldn't be harmful, but a harmless passenger virus, activated in the presense of immune dysfunction. So, again, what of the opposing view do you accept? Not clear at all."
I do not claim to be a retrovirologist, but from my research there are indeed other retroviruses that are slow acting and harmful. If you doubt this is true for humans, then you can at least consider the retroviruses that affect other vertabrates such as SIV and FIV. This link shows that much research has been done into retroviruses. http://www-micro.msb.le.ac.uk/335/Retroviruses.html
"I agree here, this is the view of most of Alternative Medicine as well as the 'nutty' Dissidents-- that immune dysfunction has many known causes and cures. Be weary of any cure-all pills or catch-all condition, of 29 previously known illnesses blamed on a passenger virus."
Essentially, we agree to be weary of unproven "cure-all" treatments. However, I never said that all dissident views are "nutty", I meant the more extreme views, like the baseless claims that condoms are useless & dangerous, etc.
"Well, I agree with you here to some extent, except that there is no phase three clinical trial showing a significant reduction in mobidity and mortality for any of the new "wonder drugs." One of the designers of PIs, David Rasnik, refuses to market them because he says they are not specific against the putative HI virus..."
Basically, we agree again. I would also like to see some studies done on the HAART drugs compared to unmedicated controls. Those who stopped taking meds, or who never took meds could be control groups, since they are already off the meds. I believe we would find that the HAART meds are useful under the right conditions. Of course I would also like to see better medications developed as well.
"(HIV) ...which has not fulfilled Koch's Postulates. In fact, the FDA does not license the HIV antibody tests for measurement or detection of actual infection with any virus."
Koch's posulates are required to prove that a virus causes a disease. However, with HIV it is not the virus that causes the disease, it is immune supression that allows for opportunistic disease. Not all HIV+ will suffer from this immune suppression, so you still have a point regarding the inability of HIV to predict disease. You are also right that the antibody tests only detect antibodies, not actual virus.
"Well, okay. But why even give someone a test for a non-specific marker and diagnose them with a "virus" and to expect illness. That is voodoo medicine and creates psychological 'AIDS' or immune dysfunction."
Antibody detection is an indication that someone has probably been exposed to a virus. It is a good starting point, because the next step would be to find out whether the virus is active, or has been adequately suppressed by the immune system. Viral load tests are supposed to estimate this, but like the meds they are far from perfect. I would like to see an even better indicator of viral load, but they do not have it yet.
"You mean pigeonholed into an 'HIV' antibody misdiagnosis? An immune response generally means you are protected, not compromised."
Antibodies do indicate some degree of protection, and some people have low viral loads without meds.
"And who disputes that? That's not what the controversy is about. It is about whether one should continue to take 'viral load' tests while the Nobel Laureate inventor of the PCR technology used is a Dissident Scientist, Kary Mullis, who says the test measures genetic fragments. And whether viral load tests have ever been done on 'HIV' antibody negative individuals to judge their efficacy. And whether T-cells are normal for Olympic athletes in the 200-400 range."
CD4 cells (t-cells) are approximations used to estimate damage done to the immune system. Like the viral load test, it is not perfect, and is just a tool to help estimate a person's risk for disease.
"But they do not inform the consent of the patient by giving them both sides of the issue. So, do you support the witholding of information from those who are treating patients? Cause that is what is happening."
I have not heard of this kind of suppression of information, but it probably does happen especially with doctors who are quick to prescribe pills. However, mainstream guidelines specifically say that starting medication is up to the patient. There should probably be more information available to them regarding the innacuracies of the tests mentioned above. You and I have found the information, but others might not have the luxury of the internet, etc.
"It is more than interesting, it is potentially life-threatening or life-saving depending on who is right. That is why I demand that AIDS, Inc. INFORM CONSENT of their clients/consumers. What some do not consider is the gamble you are taking to bye into the AIDS myth. There is no conspiracy required for popular concensus to be wrong." I would like to see better informed patients, but what can you tell them other than what we have discussed here? Do you have any better answers than these? Suppose some poor person gets a very low CD4 count, high viral load, and opportunistic infections that do not respond to conventional treatment - what do the dissidents have to offer them? At least mainstream medicine offers a last resort, complete with tales of the potential side effects of the various HAART drugs, possibility of drug resistance, failed regimines, etc. I would think it would border on malpractice for a doctor to neglect to explain these considerations to their patient before letting them decide whether they want these medicines prescribed or not.
"The medical establishment thought Cancer was caused by a virus for 10 years until the father of Retrovirology, Peter Duesberg proved it was not. He is also the very same member of the National Academy of Sciences who began questioning the viral pathogenesis of 'HIV=AIDS.'"
I've read Duesburg, and found his writing to be very informative. However, when I read that he claimed it was a waste of money to screen blood donations for HIV, I thought he was an extremist. Until it is absolutely proven to be harmless, why not screen the blood donations for it? I do respect him for offering to inject himself with HIV to prove his point, but he would probably respond like everyone else - slowly falling CD4 counts over a long period of time. Not necessarily AIDS, but a higher risk of it after awhile.
"I went off my meds and live in health and love without fear of the phantom virus. I now believe it was the mindset SAME-SEXUAL=SIN=SICKNESS that lead to the unquestioned acceptance of the HIV=AIDS=DEATH mindset."
I support your decision, and all patients decisions, on whether or not to take whatever treatments they choose. I belive there was/is an over-enthusiastic rush to get HIV+ people on medication, and perhaps now there is a more rational approach forming. It is because of dialogs such as ours, and sorting out good information from bad information, that this change is gradually happening. 2001 brought a change in therapy recommendations toward treating HIV later in asymptomatic patients. That was an indication that mainstream medicine is moving closer to your (and my) view. I wish you continued health, and thank you again for this dialogue. No matter how you look at it, HIV is not a death sentence anymore. :)
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shane
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Reged: 12/06/01
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There are certain rules of life, of the universe, that can be applied to anything, anywhere. And the rule of the "middle" applies here.
The truth no doubt is somewhere in the middle, between the dissidents and the scientific AIDS community. If they would only come together and be open to each others ideas, then maybe some real truth and forward progress could come about and end this terrible syndrome.
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You are correct, but it is the scientific AIDS community that has to take a step towards this. This is and will always be the goal of the majority of the dissidents. It is the orthodox that is refusing to end the argument.
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Stay away from those sites! They are nonsensical! Read the following:
On ABC's "20/20" prime-time news program on August 24, 2001, Dr. Mathilde Krim, amfAR's Founding Chairman and Chairman of the Board, offered a clear and compelling response to the small but vocal group of AIDS denialists who argue -- incorrectly -- that HIV does not cause AIDS. Interviewed by Connie Chung, Dr. Krim underscored the danger that AIDS denialists pose to preventing the spread of HIV and to amfAR's work. "To see others on spurious, disingenuous arguments fight us and undermine what we are doing is very, very difficult to accept -- and, frankly, offensive," she said.
"The [AIDS denial] theory has been so thoroughly repudiated by the science that it now resembles more fantasy than hypothesis." -- GQ Magazine The view that HIV does not cause AIDS is rejected by all but a handful of scientists who have done little or no research with AIDS patients and has been repeatedly debunked in scientific journals ranging from Science to the Journal of the American Medical Association. Last year, over 5,000 physicians and scientists from around the world signed a statement known as the Durban Declaration, which was published in the July 6, 2000, issue of Nature and affirmed that the evidence supporting the link between HIV and AIDS is "clear-cut, exhaustive and unambiguous. . . . It is unfortunate that a few vocal people continue to deny the evidence. This position will cost countless lives."
The evidence that HIV causes AIDS is overwhelming:
HIV infection correlates with epidemic AIDS.
Numerous laboratory, clinical research, and epidemiological studies have shown significant correlation between levels of HIV production and viral load and disease prognosis.
Simian immunodeficiency virus, which is quite similar to HIV, causes AIDS in animals (and HIV-1 itself can cause immune deficiency and AIDS in chimpanzees).
Anti-HIV drugs have succeeded in reducing AIDS-related deaths by more than 80% in countries where they are available. Also in July 2000, amfAR placed a full-page statement in The New York Times that took direct aim at those who continue to dispute the fact that HIV causes AIDS. Timed to coincide with the start of the 13th International AIDS Conference in Durban, South Africa, and signed and supported by over 500 researchers and physicians, the amfAR-sponsored statement targeted those who might be persuaded by dissident claims to discontinue HIV/AIDS treatments. Please see the PDF for the full text of the statement that appeared in The New York Times.
"The evidence that HIV causes AIDS is as good as the evidence that polio is caused by a polio virus and measles by a measles virus." -- Dr. Mathilde Krim Ultimately, AIDS denialists are promoting misinformation that encourages people to ignore treatment and prevention messages that can save lives and prevent the further spread of HIV. The number of new HIV infections in this country remains constant at between 40,000 and 50,000 annually, and the recent National HIV Prevention Conference convened in Atlanta by the Centers for Disease Control and Prevention (CDC) highlighted several disturbing trends:
After dropping sharply in the mid-1990s, the number of U.S. AIDS cases and AIDS-related deaths remained stable between mid-1998 and mid-2000, underscoring the need for early HIV testing and expanded access to prevention and treatment services. As CDC director Helene Gayle observes, "The latest data suggest that the era of dramatic declines is over [and] there are a number of signs indicating that our progress in fighting the disease is in serious jeopardy."
There is evidence of continued increases in sexual risk behavior among both HIV-positive and HIV-negative men who have sex with men (MSM) across the U.S. A recent six-city study conducted by the CDC found that young MSM ages 23-29 are becoming HIV infected at annual rates comparable to those seen among some populations of gay men in the mid-1980s. Infection rates are especially high among African American MSM, indicating the need for targeted prevention outreach.
While representing less than one-quarter of U.S. women, African American and Latina women account for 82% of new HIV infections in this country. Injection drug use has accounted directly or indirectly for between 55% and 60% of all reported AIDS cases among black and Latina women. In addition, a recent finding that 17% of young minority MSMs also engage in sex with women highlights the role that bisexuality may be playing in placing women at risk of HIV.
New research shows that significant numbers of HIV-positive people go undiagnosed for up to a decade, forgoing life-prolonging treatment and potentially infecting others. It is estimated that half of all Americans with HIV have not been tested and do not know they are carrying the virus. Finally, it should be noted that some denialists not only claim that anti-HIV treatment is ineffective, but that it actually causes AIDS. In reality, countless studies have affirmed that highly active antiretroviral therapy (HAART) can improve the health of people with AIDS and delay the progression of HIV disease. Likewise, there is overwhelming evidence that HAART has played a large role in the decline of AIDS-related deaths over the past several years.
Certainly, there are serious toxicities associated with most of the anti-HIV drugs currently in use. But as reported in the September 8, 2000, issue of AIDS Treatment News, by forcing researchers and treatment advocates to expend unnecessary time and energy defending the link between HIV and AIDS (and the efficacy of anti-HIV treatments), the denialist movement "has diverted effort from critical questions regarding what sort of research is needed and how to speed the development of better, less toxic therapies."
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Those sites are not run by doctors, AIDS organizations or anyone who has ever dealt professionally with any patients with HIV! So there is no point even looking at them. It's completely unclear what motivates these people to have such energy to try to spread their completely disproved theories. Read the following: AIDS Treatment News Issue #356 December 1, 2000 phone 800-TREAT-1-2 or 415-255-0588
Answering the AIDS Denialists: Is AIDS Real? by Bruce Mirken
Note: AIDS Treatment News has published a series of articles looking in depth at some of the bizarre ideas about AIDS, theories which are being used to persuade people to change or completely stop their medical treatment, or to ignore precautions for preventing HIV infection. One of the most bizarre is that the epidemic does not exist but is just a new name for a collection of old diseases. AIDS writer Bruce Mirken analyzes this claim and similar theories that have also been widely promoted. -- John S. James
The AIDS denialists, who dispute not only the role of HIV in AIDS but nearly all scientific knowledge about the epidemic, regularly claim that the very notion of AIDS as a distinct medical condition is a mistake. What medicine has identified as a major epidemic, they insist is nothing of the sort.
A number of variations on this theme have been put forth. Some have argued that AIDS is nothing but a "group fantasy" or "epidemic hysteria."(1) Others claim that several separate but real medical problems have been wrongly lumped together. ACT UP San Francisco has repeatedly claimed that "AIDS is over," suggesting that it did exist at one time but has somehow come to an end.
While most in the denialist camp accept some physical cause or causes for the illness we call AIDS, they claim science has fundamentally misunderstood what is going on, leading to faulty conclusions about causation.
"AIDS by definition is not new and is not a disease," the web site of HEAL Toronto declares. "AIDS is a new name for 29 old illnesses and conditions, including yeast infections, diarrhea, pneumonia, cancer and tuberculosis."(2) Christine Maggiore of the Los Angeles group Alive and Well adds that "every AIDS indicator disease occurs among people who test HIV negative," existed prior to AIDS, and has "medically proven causes that do not involve HIV."(3)
AIDS, in this view, is just a new name given to these old diseases when they occur in people who test positive for HIV antibodies. Furthermore, it is claimed that inclusion of a positive HIV test in the criteria for an AIDS diagnosis has created a phony connection between these illnesses and HIV: "Pneumonia + positive HIV test = AIDS," Maggiore writes, but "Pneumonia + negative HIV test = pneumonia," thus creating "the illusion of a perfect correlation."(4)
Though factually wrong, such statements appear regularly in denialist literature.
Another complaint is that the number of AIDS cases has been artificially increased by repeated changes in the official AIDS definition. Adding more conditions to the definition, it is argued, pumps up the number of cases even though those new cases may not even be ill.(2, 4)
What Was New in 1981? The notion that AIDS is simply "a new name for old diseases" requires ignoring years of history and reams of published medical data. The official start of the AIDS epidemic dates from mid-1981, when the U.S. Centers for Disease Control and Prevention's Morbidity and Mortality Weekly Report described cases of Kaposi's sarcoma (KS) and Pneumocystis carinii pneumonia (PCP) in young, previously healthy gay men.(5, 6) Detailed reports of these and other cases, a few involving heterosexual drug injectors, were published in several medical journals later that year.
Prior to 1980 KS and PCP were extraordinarily rare in the U.S. Annual incidence of KS ranged from 2.1 to 6.1 cases for every 10 million people,(7) usually occurring in older men of European descent. The disease generally progressed slowly, with an average survival time of 8-13 years.(7, 8)
PCP was nearly as rare, and the drug used to treat it, pentamidine isothionate, could only be obtained through the CDC's Parasitic Disease Drug Service, which kept detailed statistics. Strictly a disease of people with weakened immunity due to disease, cancer chemotherapy or immune-suppressive treatment for organ transplantation, PCP had "never been convincingly demonstrated to occur in an immunologically normal adult."(9) In one study, 98 percent of patients had known immune defects, and the others were all seriously ill infants. Even though most were quite sick even before their PCP, the disease often responded well to treatment and relapses were rare.(10)
These new PCP and KS cases shattered the pattern. Most patients were young men, often in their 20s and 30s, with no identifiable reason for weakened immunity. Their KS was "fulminant, malignant"(8) and rapidly progressing. Some had both PCP and KS, and most had a cluster of other problems including persistent fever, weight loss, swollen lymph nodes, and other infections usually associated with weakened immunity, including cytomegalovirus and toxoplasmosis. This unremitting barrage set victims on a downward spiral that commonly ended in death within a year.(5, 6, 8, 9, 11, 12, 13, 14)
This onslaught of infections in people with no known reason for being sick was so unusual that the usually reserved British journal The Lancet called it "bizarre" twice in one brief commentary.(15) Patients also showed unexplained weakness in their immune responses, with a consistent pattern of defects in their cellular immunity.(5, 6, 8, 9, 11, 12)
The physicians treating these patients had no doubt they were seeing a new clinical syndrome ("syndrome" is the medical term for a group of signs or symptoms that appear together and indicate a particular condition). And these doctors weren't babes in the woods. Several treated large numbers of gay men living a "fast lane" existence including multiple sex partners and recreational drugs, while others worked at urban hospitals treating many drug addicts, yet none of them had seen anything like this.(16)
The Evolving Definition of AIDS As with any new syndrome, scientists' understanding of AIDS evolved gradually, with the most obvious and severe manifestations noticed first and rarer or subtler ones recognized later. A careful review of how the CDC has defined a case of AIDS contradicts the cartoon version presented by the denialists and shows that the definition has evolved cautiously -- perhaps too cautiously at times. (For simplicity this analysis will focus on the CDC's AIDS case definition. While not followed universally, health authorities in other industrialized countries often use the CDC's work as a starting point. The enormous subject of AIDS in Africa and other third world areas requires a separate article.)
The CDC first published an AIDS case definition in September, 1982. AIDS was simply defined as "a disease, at least moderately predictive of a defect in cell-mediated immunity, occurring in a person with no known cause for diminished resistance to that disease." Thirteen specific diseases were listed.(17)
HIV (then known as HTLV-III or LAV) was discovered in 1984, but the CDC waited a full year, until after a discussion at the Conference of State and Territorial Epidemiologists, before revising the AIDS definition. This new definition added a small number of conditions which would be considered AIDS-defining if they occurred in a person with a positive HIV test. But the original list of infections still triggered an AIDS diagnosis without an HIV test if they occurred in a person with depleted CD4 (T-helper) cells and no known reason for immune dysfunction.(18)
It was soon clear that patients commonly experienced a much broader array of illnesses than the indicator diseases listed by the CDC. In 1987, the agency noted, "It became apparent that some progressive, seriously disabling, even fatal conditions (e.g. encephalopathy, wasting syndrome) affecting a substantial number of HIV-infected patients were not subject to epidemiological surveillance, as they were not included in the AIDS case definition." So the agency made another cautious revision, with encephalopathy (dementia) and wasting syndrome being the most notable additions to the list of indicator conditions.(19)
But the CDC's AIDS definition was still capturing only a narrow piece of the picture, and not always the most severe piece. "There are very many people who are very ill who don't have AIDS by the CDC definition," said Los Angeles AIDS specialist Scott Hitt, M.D. (who went on to head President Clinton's AIDS Council) in 1990. "There are also people with one KS lesion (qualifying them for an AIDS diagnosis) who are doing very well."(20)
Part of the problem was that the only opportunistic infections that made it into the CDC's database were whatever conditions triggered a patient's initial diagnosis. CDC spokespeople acknowledged they simply didn't have the means to track the rest.(20)
Pressure mounted on the agency to adopt a definition that was more reflective of the real-world clinical experience of the most seriously ill patients, and after a lengthy period of discussion and debate, the current definition went into effect in January, 1993. For the first time it allowed an AIDS diagnosis based purely on an immune system measure: a CD4 cell count below 200 or a CD4 percentage below 14. Based on strong epidemiological evidence, three conditions were also added as AIDS indicator diseases in people with HIV: invasive cervical cancer, pulmonary tuberculosis and recurrent pneumonia (defined as two or more episodes within one year).(21)
One thing did not change: The core list of 12 opportunistic infections -- PCP, toxoplasmosis, etc. -- that dated from the mid-1980s would still trigger an AIDS diagnosis even without a positive HIV test.(21, 22) In other words -- and contrary to the denialists' claims -- a positive HIV test has never been required to diagnose AIDS in people with these otherwise rare illnesses.
At this point it is useful to refer again to Maggiore's version of the AIDS definition, variations of which appear throughout denialist literature: "Pneumonia + positive HIV test = AIDS," but "pneumonia + negative HIV test = pneumonia." In fact, pneumocystis pneumonia triggers an AIDS diagnosis regardless of HIV status, and in HIV-positive persons, more conventional bacterial and viral pneumonias do not automatically trigger an AIDS diagnosis. To qualify as AIDS they must happen at least twice within a year, because only such multiple episodes are strongly associated with immune suppression.(21) Simply put, the "illusory correlation" so harped on by the denialists is an illusion of their own invention.
Another favorite denialist complaint is that some of the toxicities of certain AIDS drugs match items in the list of AIDS-defining conditions. As with the assertions discussed above, this claim is based on a skewed and often blatantly inaccurate reading of the case definition. In any case, the list of toxicities often cited as "AIDS by prescription"(23) consists entirely of conditions whose association with HIV was well established before AZT and other antiretrovirals came into widespread use.
Duesberg's Epidemiology and Other Mysteries A related but distinct thesis has been advanced by University of California Berkeley Prof. Peter Duesberg: AIDS is in fact several separate epidemics lumped together. Proof, he and colleague David Rasnick suggest, lies in the fact that members of different risk groups get different diseases. KS, he notes, is seen mostly in gay men, while "weight loss and tuberculosis predominate in intravenous drug users, and pneumonia and candidiasis are almost the only two of the 30 AIDS-defining diseases that are diagnosed in hemophiliacs."(24) These "distinct, subepidemic-specific diseases," Duesberg and Rasnick argue, rule out a common cause, infectious or otherwise. They further insist that AIDS indicator conditions can be divided into those that are immune deficiency-related, like PCP, and those that aren't, such as KS. A significant proportion of AIDS cases, they note, are diagnosed based on these "non immune deficiency diseases."(24)
Duesberg's reading of the literature is, to put it gently, selective. For one thing, despite his repeated assertions to the contrary, an association between KS and weakened immunity had been well established in the medical literature prior to AIDS.(7)
As for his claims about differing opportunistic infections in different risk groups, it is hardly a surprise that populations with widely varying behaviors, lifestyles and health risks would experience severe immune deficiency somewhat differently, and such differences have indeed been noted. But even a cursory glance at the medical literature quickly dynamites Duesberg's claim that these differences are so dramatic as to constitute separate epidemics. For example, five years before Duesberg and Rasnick's assertion that pneumonia and candidiasis are "almost the only two" AIDS-defining conditions seen in hemophiliacs, a European hemophiliac cohort found that of 37 diagnosed with AIDS, 6 had toxoplasmosis, 3 had wasting syndrome, 3 had dementia, 2 had MAC, 1 had CMV and 1 had lymphoma as their AIDS-diagnosing illness.(25)
The same Duesberg/Rasnick article touts both the "drug-AIDS hypothesis" and the "new name for old diseases" theory with an impressive list of references purportedly showing that AIDS-defining illnesses had been widely identified in drug users prior to and without AIDS. Duesberg's chart has at times been borrowed by other denialists.(24, 26)
But again his "evidence" wilts under close examination. For example, one reference he cites repeatedly -- as evidence that immune deficiency, candidiasis, lymphadenopathy and weight loss had been documented in heroin addicts pre-AIDS -- is a 1973 article by Pillari and Narus from the American Journal of Nursing. But the article, it turns out, isn't a study but simply an anecdotal description of patients seen in one treatment program. It gives neither numbers of cases nor occurrence rates for any of the conditions described.(27)
In fact, Pillari and Narus specifically mention just one of the four conditions Duesberg attributes to them, lymphadenopathy. Candidiasis is perhaps implied by nonspecific references to "fungal infections," while immune deficiency and weight loss are implied even more vaguely and indirectly. And although Duesberg's chart lists all four conditions as "AIDS defining," nothing in the article comes remotely close to describing an illness that would meet the criteria for an AIDS diagnosis.(27)
Finally, a different spin has been put out by ACT UP San Francisco. Some of their materials echo the general denialist notion that the whole epidemic is a scam, but their most-repeated phrase in recent years has been, "AIDS is over." Such statements often refer to declining numbers of AIDS cases and deaths.(28)
But extensive evidence links those declines to improved anti-HIV treatment (for more on this see AIDS Treatment News' special issue, "Treatment and Survival," Sept. 8, 2000). And for the families of the 10,198 people who died of AIDS during 1999 according to the most recent CDC figures,(29) AIDS is certainly not over.
References Schmidt, Casper G., "The group-fantasy origins of AIDS," in The AIDS Cult, edited by John Lauritsen and Ian Young, Asklepios USA, 1997.
MacDonald, Robert, "Healthy skepticism about HIV," HEAL Toronto web site, http://www.harmsen.net/heal/healthy_skeptic.html.
Maggiore, Christine, What if Everything You Knew About AIDS Was Wrong? American Foundation For AIDS Alternatives, p. 51.
Maggiore, p. 1.
Gottlieb, MS, and others, "Pneumocystis pneumonia -- Los Angeles," Morbidity and Mortality Weekly Report, 1981: 30: 250-52.
Friedman-Kien, A. and others, "Kaposi's sarcoma and pneumocystis pneumonia among homosexual Men -- New York City and California," Morbidity and Mortality Weekly Report, 1981: 30: 305-08.
Safai, B. and Good, R., "Kaposi's sarcoma, a review and recent developments," Clinical Bulletin, 1980: 10: 62-69.
Friedman-Kien, A., "Disseminated Kaposi's sarcoma syndrome in young homosexual men," Journal of the American Academy of Dermatology. 1981: 5(4) 468-71.
Masur, H. and others, "An outbreak of community-acquired pneumocystis carinii pneumonia," New England Journal of Medicine, 1981: 305: 1431-8.
Walzer, Peter D. and others, "Pneumocystis carinii pneumonia in the United States," Annals of Internal Medicine, 1974: 80: 83-93.
Gottlieb, Michael and others, "Pneumocystis carinii pneumonia and mucosal candidiasis in previously healthy homosexual men," New England Journal of Medicine, 1981: 305: 1425-31.
Siegal, Frederick and others, "Severe acquired immunodeficiencies in male homosexuals, manifested by chronic perianal ulcerative herpes simplex lesions," New England Journal of Medicine, 1981: 305: 1439-44
Durack, David, "Opportunistic infections and Kaposi's sarcoma in homosexual men," New England Journal of Medicine, 1981: 305: 1465-7.
Hymes, Kenneth and others, "Kaposi's sarcoma in homosexual men -- a report of eight cases," The Lancet, 1981; ii: 598-600.
"Immunocompromised homosexuals," The Lancet, 1981, ii: 1325-6.
Shilts, Randy, And the Band Played On, updated edition, Penguin Books, 1988, chapters 2-8.
"Current trends update on acquired immune deficiency syndrome (AIDS) -- United States," Morbidity and Mortality Weekly Report, 1982: 31: 508-08.
"Current trends revision of the case definition of Acquired Immunodeficiency Syndrome for National Reporting -- United States," Morbidity and Mortality Weekly Report, 1985: 34: 373-5.
"Revision of the CDC Surveillance Case Definition for Acquired Immunodeficiency Syndrome," Morbidity and Mortality Weekly Report, 1987: 36(supplement no. 1S).
Mirken, Bruce, "AIDS Name Game: Help or Misery Turns on Obsolete Definition," Los Angeles Reader, May 25, 1990, p. 3-4.
"1993 revised classification system for HIV infection and expanded surveillance case definition for AIDS among adolescents and adults," Morbidity and Mortality Weekly Report, 1992: 41: RR-17.
Kitty Bina and Dr. Richard Selick, CDC, personal communication.
Maggiore, p. 30.
Duesberg, P. and Rasnick, D., "The AIDS dilemma: Drug diseases blamed on a passenger virus," Genetica, 104:85-132, 1998.
Aronstan, A. and others, "HIV infection in haemophilia -- a European cohort," Archives of Disease in Childhood, 1993: 68: 521-24.
Maggiore, p. 56.
Pillari, George, and Narus, June, "Physical effects of heroin addiction," American Journal of Nursing, 1973, 73: 2105-8.
ACT UP San Francisco press release, "ACT UP San Francisco launches survive AIDS campaign," March 27, 2000.
U.S. HIV and AIDS Cases Reported through December 1999, year-end edition, Vol. 11, no. 2.
ISSN # 1052-4207
Copyright 2000 by John S. James. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used.
Back to the AIDS Treatment News December 1, 2000 contents page.
This document was provided by AIDS Treatment News.
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I think this dialogue is important also...
You said: "Basically, we agree again. I would also like to see some studies done on the HAART drugs compared to unmedicated controls. Those who stopped taking meds, or who never took meds could be control groups, since they are already off the meds. I believe we would find that the HAART meds are useful under the right conditions. Of course I would also like to see better medications developed as well."
I don't believe we could say what we would find. And to suggest that these highly toxic and still really experimental chemotherapy cocktails are effective-- or even specific to 'HIV' instead of addressing the 29 previously known and unrelated 'AIDS' redefined illnesses is at best irresponsible. Do you know that the AIDS Organizations oppose any funding for research, even 1% of the budget, into the Dissident Scientific and Alternative Health paradigms.
"Antibody detection is an indication that someone has probably been exposed to a virus."
There are many anti-bodies, foreign proteins, genetic or celular debris, and most retroviruses are endogenous or part of our genetic make-up and harmless passenger viruses-- so how can the AIDS Apologists be sure a non-specific anti-body response means exposure to a harmfull virus? Especially without Koch's Postulates fulfilling the infectious model hypothesis?
What are the problems with the testing? (There are two tests, by the way, the "ELISA" test and the "Western Blot" test. The latter is said to be more accurate, and is used in this country as a confirmatory measure against two prior ELISA tests.) For starters, it does not test for HIV per se, but for patterns of proteins thought to be specific to HIV. These are specified as ''p'' for protein, followed by a number that represents a molecular weight. HIV is recognized by proteins p24, p17, gp41, gp120, etc. It wasn't until the early '90s that researchers thought to check how ubiquitous these ''HIV proteins'' might actually be.
In 1993, the first major critique of the HIV tests was written by a team of researchers from Perth, Australia, and published in the journal Bio/Technology. Researchers Eleni Papadopulos-Eleopulos, Valendar F. Turner, and John M. Papadimitriou reported that p24 antibodies have been found in a number of people who do not have HIV, including 41 percent of patients with multiple sclerosis and one out of every 150 healthy people with no afflictions. Conversely, they found that p24 is not found in all HIV patients or even all AIDS patients.
If things were right in the world of science, this paper would have been the metaphorical iceberg that sank the Titanic. I recall feeling a palpable sense of shock when I first read it. It's now six years later, and nothing has changed. But listen to what these researchers unveiled about the HIV test.
They made four major points: 1) The tests are not standardized, meaning different labs have different criteria for determining what is negative and what is positive, and 2) not reproducible, meaning the test fails when tested against itself, and repeated tests can alternate between positive and negative; 3) proteins that are thought to be exclusive to HIV might instead be cellular contaminants or debris; and 4) there is no ''gold standard'' for the HIV test, meaning there is no purified isolation of HIV to test against.
They reported on Amazonian Indians who have no contact with anybody outside their tribes and have no AIDS. Somehow, 13 percent of the Indians were HIV-positive, according to the Western Blot test. "The above data,'' the Perth team wrote, ''means either that HIV is not causing AIDS… or the HIV antibody tests are not specific.''
There are at least 70 underlying conditions -- including pregnancy, auto-immune disorders, fever, flu, flu shots and malaria -- that can trigger a false-positive test ressssult. That could account for many of the so-called AIDS cases in Africa, where only the ELISA test -- the more problematic of the two tests -- is used. What if all these Africans are really testing positive for malaria?
The HIV test is a scale, not a "yes" or a "no." Many people fall in the gray zone and are told they are either positive or negative, depending on which country they are in and which lab their blood has been sent to.
The Perth team cites data from a mass screening performed by the U.S. military, in which there were 4,000 people who had two positive ELISAs followed by a negative Western Blot. All 4,000 would have been told they were HIV-positive anywhere in Africa and even in England, but negative in the United States and Scotland. The researchers also found 80 people who had two positive ELISAs and a positive Western Blot, followed by a negative Western Blot. Those 80 people, had they not been part of this particular study in which blood was tested over and over, would have been home with a death sentence -- told they had the AIDS virus. In the United States, the criteria for telling a person they are positive stops with two ELISSSSAs and one positive Western Blot. How many other people, if they had the luxury of an additional Western Blot, might turn up negative?
I have met, over the years, dozens of people who have stories of tests coming back positive, then negative, then indeterminate. In some cities, results have varied from lab to lab, with the difference between thinking you will live and thinking you will die hinging on a minute gradation of color, and perhaps the mood and or belief system of the lab technician. If the blood is known to come from a gay man, for instance, it will be more likely to come back positive. In fact, blood has been tested for this bias, as journalist John Lauritsen has reported. The same sample tested positive when the lab thought it came from a gay man, and negative when the lab thought it was from a low-risk heterosexual. Anonymous testing, including the do-it-yourself blood and oral tests you can find in drugstores, doesn't suffer from similar biases, but it is still flawed in the four ways described above.
Now HIV antibody testing has been dealt an additional blow. Medical researcher Dr. Roberto Giraldo, who for the past six years has been working at a lab of clinical immunology at a large New York hospital, published his findings in Continuum's most recent issue.
When an HIV test is performed, the blood is first diluted. With ELISA, it is diluted 400 times. The dilution is somewhat less with the Western Blot. Most blood tests that look for antibodies against germs use undiluted blood. But to prevent false positive results, some blood tests -- including tests for measles, mumps and cytomegalovirus -- do use diluted blood. However, these are only diluted at a ratio of 1:16 or 1:20.
''What makes HIV so unique that the test serum needs to be diluted 400 times?'' asks Giraldo. ''And what would happen if the individual's serum is not diluted?''
Well, he decided to find out. Giraldo ran about 100 specimens, including his own blood, undiluted. Every single sample tested negative for HIV when diluted to 1:400 and came back positive when tested without dilution. ''… the results presented here,'' he writes, ''suggest that every single human being has HIV antibodies. And this suggests that everybody has been exposed to HIV antigens.''
In other words, HIV, (if, for now, we agree such an endogenous entity exists, which is another whole kettle of fish) is not a thing or a bug or a whole round viral entity that you either have or don't have. It is all a question of degree. If you have been exposed to HIV antigens many, many times, your levels of HIV will eventually rise to the point where you will test positive.
But as the poet Tomas Transtromer once put it, perhaps we are seeing these events from the wrong perspective -- a heap of stones instead of the face of the sphinx.
What the Perth team is actually trying to tell us is that HIV is part of all of us. When they say it doesn't ''exist,'' as they notoriously have, they seem to be saying that it does not exist as a foreign invader. It exists as part of our genome, composed of maybe millions, maybe billions, of retroviral particles.
***
Why does this all matter? Because a flaw in a diagnostic test can wreak havoc and tragedy in a human life.
Two weeks ago a 3-year-old child in Winston Salem, North Carolina, was struck by a car and rushed to a nearby hospital. Because the child's skull had been broken and there was a blood spill, the hospital performed an HIV test. (This story was reported by WXII Channel 12 newscaster Tonja Lecklitner.) As the traumatized mother was sitting at her child's bedside, a doctor came in and told her the child was HIV-positive. (Both parents are negative.) The doctor told the horrified mother that she needed to launch an investigation into her entire family and circle of friends because this child has been sexually abused. There was no other way, the doctor said, that the child could be positive.
A few days later, as the hysteria abated, the mother in a moment of clarity demanded a second test. It came back negative. The mother was understandably livid. (Imagine how lives would have been shattered in one moment had she begun accusing family members of sexual abuse!) She asked the doctor to apologize, but in keeping with HIV-related arrogance, he refused. The case was referred to the Culpepper, Virginia-based watchdog group International Coalition for Medical Justice (ICMJ).
''This is very Southern,'' remarked ICMJ's director Deane Collie, herself a Southerner. ''This mother told me she would have been satisfied with an apology. In the South, a man in that situation would be expected to act like a gentleman, to admit he had made a mistake and to apologize. But he refused.''
The mother may sue the hospital. The hospital, meanwhile, held a press conference, where a remarkable admission was made. In her effort to clear the hospital of any wrongdoing, a hospital spokesperson announced that ''… these HIV tests are not reliable; a lot of factors can skew the tests, like fever or pregnancy. Everybody knows that.''
INDEX of ARTICLES on the HIV TEST: www.virusmyth.net/aids/index/hivtests.htm
I said earlier: But they do not inform the consent of the patient by giving them both sides of the issue. So, do you support the witholding of information from patients? Cause that is what is happening.
"I have not heard of this kind of suppression of information, but it probably does happen especially with doctors who are quick to prescribe pills. However, mainstream guidelines specifically say that starting medication is up to the patient."
They are also too quich to diagnosis from socalled 'surrogate markers' which Alternative Medicine and Dissident Scientists do not agree are accurate indicators of health. "There should probably be more information available to them regarding the innacuracies of the tests mentioned above. You and I have found the information, but others might not have the luxury of the internet, etc."
Yes, there should! Why probably? The AIDS, Inc. organizations are the ones receiving all federal and state and most all private funding claiming to serve the diverse interests of all those affected. And yet, they do not respect the diversity of health care philosophy or practise, they do not support a free exchange and exploration of the Dissident Scientific and Alternative Health paradigms. These conflicts in research methodologies and ideologies seriously affects our progress in knowlege about health by thinking inside the virus/germ, dominant, conventional pharmaceutically based, slash/burn box. All consumers or those misdiagnosed 'HIV+' must actively oppose these policies of AIDS, Inc. Our lives and loves depend on learning the truth about 'HIV/AIDS.'
"I would like to see better informed patients, but what can you tell them other than what we have discussed here? Do you have any better answers than these?"
"Suppose some poor person gets a very low CD4 count, high viral load, and opportunistic infections that do not respond to conventional treatment - what do the dissidents have to offer them?"
What's ironic is that the Apologists oppose the research funding of a free exploration and exchange of the dissident scientific and alternative health paradigms and protocols-- and yet use the fact that there is not enough research for opposing the same. Sort of a catch-22 don't you think?
In March of 2001 I was kicked out of LA Shanti's Facilitator Training Program in attempting to create a safe place for those diagnosed "hiv+" wishing to explore ideas raised by aids rethinkers. This even though A number of participants supported my participation. I had discussed previously with staff that I would object at appropriate portions of the presentation, though not raising my voice nor taking longer than anyone else. We then presented literature outside the facility we were being trained at on the last day of at LINN HOUSE, 1001 Martel Ave., West Hollywood, California. This former hospice-- also known as the 'Betty Ford of Protease' and where I stayed while intoxicating my body-- is now a converted office building for the multi-million dollar AIDS Healthcare Foundation.
LA Shanti later postponed their next PLUS seminar till May saying they will not reveal it's location until a week beforehand and only to those registered.
And the Board of Being Alive LA in West Hollywood has voted twice over the last four months to not allow a similiar support group within it's programs, despite a comparitively 'softsell' approach at lobbying, attending board meetings, etc.
Some Dissidents and I attended the Positive Voices event in the City of West Hollywood Park Auditorium organized by many establishment aids organizations. I got a round of applause from the over 100 in attendance when I talked about my difficult solution and how I had been lead by the discovery of certain scientific facts to dissent from conventional, inside-the-box thinking about hiv/aids-- and said those who were interested could contact me. Afterwards, we passed out literature and books to those interested outside the facility. I believe there are many opportunities to participate in the process and not by disrupting it. "At least mainstream medicine offers a last resort, complete with tales of the potential side effects of the various HAART drugs, possibility of drug resistance, failed regimines, etc. I would think it would border on malpractice for a doctor to neglect to explain these considerations to their patient before letting them decide whether they want these medicines prescribed or not."
It should be considered malpractise for them not to inform the consent of their patients regarding Alternative and Dissident approaches. Chronic illness is a multi-factorially influenced set of conditions. There are many known causes and cures of the 29 previously known and unrelated 'AIDS' redefined illnesses.
[please see BOTH SIDES NOW: BEYOND FLAT EARTH MEDICINE]
-Kyle
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Well researched and written Kyle however I think the AIDS Inc. Ship is fast sinking its just that some are still acting like its not and are desperate to hold on to the rails while others are jumping into life rafts. We are witnessing the end of AIDS inc. and the corruption and lies surrounding it. There is progress and the dissent is rising on a daily level.
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