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XMRV vs HIV and long-term anti-retrovirals

Discussion in 'XMRV Testing, Treatment and Transmission' started by Sasha, Feb 25, 2010.

  1. Gerwyn

    Gerwyn Guest

    People who were diagnosed with aids and then stopped their medicine for two years would almost certainly end up dead.In fact studies have proved beyond doubt that HIV is sexually transmitted.Rethinkers dont know anything they surmise and speculate.Rethinkers should do more thinking then perhaps they would not have to rethink quite so much.AIDS defining diseases is just a made up term with absolutely no scientific meaning.Aids" Rethinking" revsionism and denial(all different labels for the same activity) has been responsible for the needless deaths of hundreds of thousands of people
  2. Knackered

    Knackered Guest

    Are you on Antiretrovials or not?

    I've just watched a video of you saying you won't take them because they're toxic.

    [video=youtube;_Nh-t3LA6e4]http://www.youtube.com/watch?v=_Nh-t3LA6e4[/video]

    You seem to find it upsetting that people tell you you'll die if you don't take those meds, but they're trying to save you life. Thought power won't keep you alive, antiretrovirals will. This video is really shocking to me. I really hope you come around and help yourself.
  3. Gerwyn

    Gerwyn Guest

    yes if they helped so much why stop them for two years.?
  4. Noreen Martin

    Noreen Martin

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    Yes, since last fall. I have to stop them for 3 weeks to have several tests ran at VIPdx, then I will restart them for chronic fatigue and for fibromyalgia. Believe me, if I didn't have these particular diseases, then I would not be on the HAART, as I have found that it is not necessary for HIV.

    Remember, I have had a lifetime of immune diseases that even LDN could not address them all. LDN has certainly helped to keep colds, pneumonia, etc. away from me and I will continue to take it. My husband had strep throat, but I didn't get it. Nevertheless, LDN for me, was not strong enough for the effects of chronic fatigue and fibromyalgia, which from my viewpoint is worse than most AIDS diseases, which when treated go away. One is stuck with these two diseases for life and usually without many treatment options.
  5. Gerwyn

    Gerwyn Guest

    She clearly stated she was HIV negative
  6. Gerwyn

    Gerwyn Guest

    Not really, I have been off my meds for up to 2 years will no AIDS defining diseases. Many others are doing it, it just doesn't make the news. No, most of us off the meds who are rethinkers know that it is not a sexual disease. In fact studies that have been don't prove that it is sexually transmitted. My husband has consistently tested HIV-. Remember, the test is an "antibody" test only.

    IF you have these diseases why did you stop a treatment that you found so effective for up to two years?

    You would be the first aids victim who did not find anti aids treatment neccessary.

    People with AIDS who stop treatment invariably die a quite horrendous death

    If someone is tested and is HIV- they dont have the virus and cant develop AIDS.In short they are a member of the unifected population
  7. Gerwyn

    Gerwyn Guest

    HIV tests and AiDS denialists

    HIV tests have been criticized by AIDS denialists (a fringe group which believes that HIV either does not exist or is harmless). The accuracy of serologic testing has been verified by isolation and culture of HIV and by detection of HIV RNA by PCR, which are widely accepted "gold standards" in microbiology.[22][23] While AIDS denialists focus on individual components of HIV testing, the combination of ELISA and Western Blot used for the diagnosis of HIV is remarkably accurate, with very low false-positive and -negative rates as described above. The views of AIDS denialists are based on highly selective analysis of mostly outdated scientific papers; there is broad scientific consensus that HIV is the cause of AIDS.[34][35][36]
  8. Noreen Martin

    Noreen Martin

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    Many are not on haart and are not sick and dying

    A friend of mine has been HIV+ for 23 years and is not on the HAART nor is he dying. Check out living without HIV drugs. com and hear real life stories: http://www.livingwithouthivdrugs.com/
    I will have my story removed from the site since I take them off-label for other issues.

    Here are more people who are HIV+ and not on the HAART and are alive!
    http://wearelivingproof.org/

    Many are doing this too but are not as vocal. I am in contact with many such persons from all over the world.

    I HAVE NEVER STATED THAT I WAS HIV negative!! I HAVE ALWAYS TESTED HIV POSITIVE+!!!!!

    I have a lot going on in life right now with school and trying to move. Those with sincere questions may contact me via email, mention this site so that I will know that it is not spam, noreenelaine@hotmail.com
  9. Robin

    Robin Guest

    There are people who are genetically protected against HIV progression. On average, it takes 8 to 12 years to progress (see knackered's chart), though many people are HIV+ with no symptoms for much longer. A statistically small group of people may never progress.

    Stories of HIV+ people who do not have AIDS is not sufficient evidence to conclude that HIV does not cause AIDS.
  10. jace

    jace Off the fence

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    Noreen, I'm really confused. Following your linkhttp://wearelivingproof.org I came across the story of Christine Maggiore, who died in 2008. She was HIV+, like you, I believe, and she died of pneumonia. Is the re-thinker's argument that if you have no AIDs defining diseases, you don't ergo have AIDs?

    When I was nursing AIDs patients, in the early '90's (to their death, usually, but that was the way it was, it wasn't my fault) pneumonia was a common opportunistic infection of late stage AIDs. Interestingly, once the anti-retroviral treatment were in place, that work dried up. Thank heavens.

    You take good care of yourself, you hear. Everyone has the right to follow their own road.
  11. Gerwyn

    Gerwyn Guest

    Some of Noreen Martins biopage

    Feeling better, Martin decided to go off the antiviral medicine in early 2005, but soon returned to it after pressure from the doctors and her husband. Last March, she decided that she would get off the medicine and not look back. She is now taking Low Dose Naltrexone, a drug that helps people with immune deficiency diseases, that was prescribed by another physician.

    Though he's not familiar with the rethinkers movement, Robert Cantey, director of infectious diseases with the Medical University of South Carolina, says an AIDS patient ditching their drugs isn't uncommon.

    "That's a typical response when someone has a good response to the medicine," he says, but notes it was more common years ago when the side effects were more severe.

    Martin says she's been in great health since going off her antivirals, but the blood tests paint a different picture as her CD4s, the helper cells that ward off diseases, continue to fall and her viral load climbs from less than 100 to more than 100,000. Cantey says the numbers are now in the range where Martin is susceptible to brain, lung, or bloodstream infections that are common among AIDS victims. He says Martin's late diagnosis likely contributed to her quick drop in CD4s.

    "The worse those numbers are when you go on the medicine, the faster they'll drop when you go off the medicine," he says.

    Meanwhile, Martin's advice for others is to stay healthy and don't get tested for HIV.

    "People's lives are being ruined by this very faulty test," she says. "You get the results and it's downhill from that point on. Doctors need to treat symptoms, but they don't do that. All they care about is if you're positive. If you're positive, you're screwed."


    ll they care about is if you're positive. If you're positive, you're screwed."

    "Denialists"

    Rethinkers have been combated quietly over the last 20 years, but more high profile attention on the movement in the past few years has prompted scientists that support the link between HIV and AIDS to openly refute the rethinkers' claims. Facing the public doubts of the South African government in 2000, 5,000 scientists, doctors, and researchers, including several Nobel Prize winners, signed the Durbin declaration that reaffirms that HIV causes AIDS.

    Earlier this year, after what they saw as a one-sided story on rethinkers in Harpers magazine by a writer immersed in the rethinkers movement, Moore and other HIV scientists and doctors began the website www.aidstruth.org to refute the claims in the article. They have since updated the website to combat other claims by the rethinkers, whom they refer to as "denialists."

    "These people are basically being persuaded to kill themselves," Moore says.

    If drug use causes AIDS, rethinkers then note that the concerns of sexual transmission are moot because it cannot be spread this way. Martin says that she does not use protection during sex with her husband. She points to a study by California scientist Nancy Padian that studied heterosexual couples where one was HIV-positive and one was HIV-negative and found that transmission of the disease was far less than one percent (as low as 1 in 1,000) among heterosexual couples.

    It's Padian herself who refuted these arguments earlier this year on www.aidstruth.org. She notes that her study regarded couples that were counseled to use protection, not avoid it.

    "Individuals who cite the 1997 publication ... in an attempt to substantiate the myth that HIV is not transmitted sexually are ill-informed, at best," she stated. "Their misuse of these results is misleading, irresponsible, and potentially injurious to the public."

    Africa's high-profile struggle with AIDS has also received the ire of the rethinkers. People with AIDS in Africa are dying from the same diseases that have always plagued them: wasting, malnutrition, and tuberculosis. Rethinkers claim this is because AIDS is not an epidemic in Africa and that the perceived plight is just a way to pull money to the region and bolster the global fight against AIDS.

    "I've seen commercials of kids starving in Africa," Martin says. "That's nothing new. Now they have something new they can blame it on."

    These and other attempts to refute the claims of the rethinkers have done nothing to quell their continued belief that everything the world has been told about HIV is wrong. Noreen Martin is active daily on a number of rethinker web forums and she has started her own website to further the cause and chart her own progress.

    "Let people make up their own mind," Martin says. "I made up my mind and I'm not turning back."
  12. Hope123

    Hope123 Senior Member

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    I agree with the posts here about "AIDS denialists" from Gerwyn, Knackered, Jace, Robin, etc. As someone who has taken care of HIV+ folks before and after the antiretroviral era and has an HIV+ friend on them, Noreen's views are DANGEROUS to HIV+ people's health. Before I became ill, we were seeing people in their 50s and 60s who had survived 10+ years because of these drugs. Older colleagues commented that they had never thought they would be seeing "geriatric" HIV patients because the death rate was so high in the early 1990s.

    Also, because transmission of HIV to babies by pregnant women can be drastically decreased by antiretrovirals, it is recommended now that physicians screen all pregnant women for HIV. Some women refuse but the majority want to do whatever they can to protect their child's future health. Early treatment means that even some babies born HIV+ become HIV- over time.

    It is Noreen's choice to do what she wants with her health but I suggest people check out mainstream sites about HIV. Here's one:

    http://www.nlm.nih.gov/medlineplus/aids.html

    FYI, clarification on words: HIV+ means you have evidence of HIV infection; AIDS refers to when the illness has progressed to the point where a person gets unusual infections or their immune cell (CD4) count is <200, which puts them at much higher risk for unusual infections. Thus you can be HIV+ early on and not have developed AIDS yet.

    Also, it is still way more common for people not on treatment to develop AIDS once they are HIV+. It is the RARE person (1/500 estimate) who has the genetic quirk that doesn't develop AIDS without treatment and the only way to know this is to follow them for at least a decade as AIDS can develop over years.

    Finally, it isn't automatic that everyone who is HIV+ gets placed on medication right away. The person's medical history as well as lab tests help determine the appropriate time for medication.
  13. bluebell

    bluebell Guest

    No offense to Noreen, but I think this narrative illustrates what Gerwyn is so upset about. Armchair virology is downright dangerous.
  14. CFS-FIBRO-LYME

    CFS-FIBRO-LYME

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    If you've read "Lab 257: Inside Plum Island", "Cure Unknown: Inside the Lyme Epidemic", "Osler's Web", etc. you know that the government, press, doctors, corporations and everyone else lies to you repeatedly and without remorse, regardless of consequences.

    People with CFS arguing about "valid studies" is extremely ironic. Should I start arguing about how all the CFS studies that say we're all sexually abused hysterical women "prove conclusively" that case for CFS? Especially for all of us males, it must be the case!

    The point is very simple: We are all in a "forced trust" relationship in almost every facet of our lives. This is the preferred operational mode for scamsters and crooks of all stripes. The only way to truly "know" something is to be able to verify or do it yourself. This requires each and every one of us to become scientific and medical researchers and verify test results stated in "scientific papers" independently ourselves.

    Examples of forced trust relationships:
    1) All of your levels of government and military (as in we promise not to harm you....much).
    2) All of the scientific, mechanical, engineering communities and their watchdog agencies (why do we need the watchdogs anyways? Can't we just all get along? No.) We award all major construction projects to the lowest bidder and pay them up to a 25% "bonus" to finish the project hastily. Remember that every time you start your "safe" Toyota and drive over a bridge or work in a high-rise.
    3) All corporations and non-gmo's
    4) All financial institutions
    5) Everything you eat, drink and breathe.
    6) Pretty much everything you read.

    I live in Houston, Texas and have been on-site to "the largest toxic waste incinerator in North America" (their words, not mine) run by Laidlaw, who at the time was in the press for cooking their books. It happens to be situated right on the Houston Ship Channel right at the San Jacinto monument, the one where Texans "celebrate" the victory over Santa Anna and the independence of Texas. The winds typically blow out of the Southeast, blowing this supposedly non-toxic ash directly over the Houston metropolis. I asked about safety measures and the manager said, well, our waste areas are lined with plastic (but visibly open on top - like a dirt mound). I asked what happens when it floods (very common in Houston and the ship channel is the primary outlet for flooding). "It gets washed right into the bay, doesn't it?" I said. "Well, yeah, I suppose so", he answered, continuing "but it's very safe after incineration!"

    I could go on, but I realize everyone is going to believe what they are brainwashed to believe, er, "choose" to believe, based on what they are told over and over again absent actual personal scientific methodology applied by that person.

    In short, most everything in your life is accepted based on blind faith and the real irony is most people will argue otherwise. If you're told the same thing over and over again and given cases that "prove" it to be true, you're going to believe it, whether it is true or not.

    Remember H. Pylori? Doc says ulcers are a bacterial infection, all "respected professionals" say you're crazy, guy infects himself, gets ulcers and cures himself? One case proves it, right? Good science? No, wouldn't even make a scientific journals' bullshit requirements that mean nothing except that you're well funded and therefore, part of the "right to rule" class. Yet, apparently true. Go figure.

    You don't "know" what you know until you personally know it and even then you can't tell anyone because they won't believe you if it goes against the politically accepted position. If faced with death by AIDS or death by slow kidney and liver failure from the treatment of AIDS, that's not really much of a difference is it? You're still dead in a very slow and painful way. As soon as "treatments" that are proven not to cure are "required by force" as is done with cancer radiation treatments (remember radiation kills?) for children, you no longer have freedom but tyranny.

    That said, let's start taking bets on when and what Noreen is going to die from, since we're all experts now. I bet cancer, because radiation causes cancer and doctors don't believe in homeopathy (like cures like), all the while "treating" cancer with the most toxic mutagenic and cancer causing toxic waste substance known to man, radiation!

    In my opinion, if it sounds really stupid or there is a never ending war on it, it's bullshit.

    Examples: "War on Terror" - A war against a military tactic by definition cannot be won until the tactic is no longer useful militarily. "War on Cancer" - no cures, ever. Those that reported to work, quashed and doctors labeled as crooks or quacks or both. Remember when diseases actually were cured? When was that, back in the stone age, right?

    I know, I'm a nut job because I cause your already overstimulated paranoid brains to worry even more than you do on your own, so kill the messenger and settle down, everything is fine. Now go back to sleep, everything is fine and right in the world again because it was printed in a "respected" journal more than once.

    Anyone who has tried long term antibiotics or antivirals or any thing else has gotten really sick of taking them and the side effects to your pocketbook, veins for bloodwork, etc. Not to mention physical side effects.

    Do I think Noreen is crazy? She's just another one of us in this insane asylum prisoner planet trying to find a way out that goes against the system's solution that isn't a solution at all. She is at least trying to use her own awareness of how she feels and what her lab tests say as somewhat of a guide. I would think more of you CFS hysterical women (and men) would get that.

    How many of you have tried "juju juice" or "miracle oil" or "Hydrogen Peroxide IV's" or whatever else trying to get well that someone says helped them? Are you crazy? Or just desperate?

    Who can say that the toxic stew that is our food, water and air aren't the primary causes of everything that ails us?

    In India today they shit, piss, and throw their dead into the water they drink and we call them ignorant. In Houston, all the toxic waste from petrochemicals, fluoride, residual drugs of all sorts and chlorine are in our water but hidden to the naked eye by science by the use of alum, which binds with particulates making it appear clear to the naked eye when it isn't. Run an electrical current through the water and you'll see what you're really drinking. In Houston's case, there is a layer about 1/3 of the total volume that looks far worse than used motor oil that forms in the water. I know, I've personally done the science. So who really are the ignorant ones - you tell me.
  15. Kati

    Kati Patient in training

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    It sounds like Noreen is shopping for a new diagnosis. Interestingly XMRV is leading us towards antiretrovirals. What is Noreen going to do if and when she tests positive? Argue that she doesn't need ART? What is Noreen going to do if she tests negative? Argue that the tests are wrong?

    Noreen it's one thing to refuse treatments that lead to your own death. It's another thing to risk someone else's life (your husband) or worse to promote cessation of treatments that have proved to control the viral load of HIV + patients. This is plain ridiculous and harmful.
  16. bluebell

    bluebell Guest

    I didn't mean to cause trouble. I personally believe the results of good science (and credit it with the fact that if I were writing this in 1830 I'd be doing it from the grave, since the average lifespan at that time was approx. 30 years), but don't require anyone else to. People can choose any kind of death they want, as long as they don't take other people along for the ride. If I had more energy I'd put in a kind word for the scientific method, which - free from politics and money - is a beautiful and nearly perfect thing, IMO. I grew up with research scientists and - believe it or not - the majority seem to be really smart people who want to know more about the way the world works. It is not that they are immune from greed or mistake, it's just people are drawn to that kind of career out of curiosity and wonder - pretty benign motivations. Again, that is simply my impression, nothing more. I do feel grateful, however, to the researchers and doctors who have never given up on us, and to people like Gerwyn who can explain their work. My post was an (ineffective) attempt to express that gratitude. I wish you peace and health! May they come to all of us in forms we can accept.
  17. zoe.a.m.

    zoe.a.m. Senior Member

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    It's my understanding (and I don't want to speak for her) that Noreen is taking ARTs. But, if I remember correctly, she said she's taking them because her CFS/FM symptoms are much improved on the therapy, not because of her HIV symptoms.

    Now, I don't have a dog in this fight per se, but there are quite a few interesting questions about the connection between HIV and AIDS out there. I had heard of the groups who think that HIV does not cause AIDS and I immediately thought it was ridiculous. I was intrigued though because AIDS and ME/CFS sure look a lot alike so I started doing some reading. I can't say I'm on one side or the other: just that I'm on the side that more research is needed (and it needs to go beyond ARTs).

    The idea that HIV does not cause AIDS is not just a fringe theory (but it's a lot more complicated). Dr. Montagnier (the guy who 'discovered' HIV) has since renounced his original theory and has said that HIV is a basically a passenger virus that is only deadly when combined with mycoplasma coinfections. I think this theory also came about from a Dr. working for the US Army who has studied mycoplasma infections and thinks they are the true culprit. I'm just paraphrasing from things I've read in the past, but hopefully it's fairly accurate.

    Montagnier does not think HIV is harmless, but I believe he changed his thinking that the mycoplasma infections might be the more important to treat of the two. It's actually very interesting stuff and all any of these scientists wanted was to have more research in the area of mycoplasma coinfections and they were shut down, tossed out and called lunatics essentially. I do think there's an issue of frustration within some of the scientific community that, because there is so much money being made/to be made with ARTs, that any challenge to the HIV-only theory has just been silenced. It's really done everyone a disservice because it was quite a hopeful thing that the man who discovered HIV said that there is more to find and more that can be done, but it's had no support. I personally would be very grateful if mycoplasmas were as well known and discussed and treated as bacterial infections. I think it would benefit all of us.

    Anyway, I do get the feeling that some very trusted scientists and virologists question the HIV theory, but are equally curious about why ARTs are helping so many people improve. What is it exactly that they do--and do they only affect HIV? I also don't think the "doubters" are necessarily not taking the ARTs: many people are just asking good questions since a lot of what was purposed about HIV didn't pan out. I don't think Montagnier and others are encouraging people to stop treatment, but there is interest in treatments for mycoplasma that would be less toxic than the HIV drugs and maybe equally effective.

    It's worth checking out if anyone has the time.
  18. Robin

    Robin Guest

    Hi Zoe,

    I have to disagree with a lot of what you wrote! Sorry!

    It depends on what you consider "fringe". If you're a mainstream medical infectious disease doctor, then, yeah, it's fringe. ;)

    This is not true. Read his nobel lecture (warning, it's a PDF.)

    He goes into great deal about it the virology of HIV and it's very clear that he believes HIV causes AIDS, he even goes into Koch's postulates at great length. Further, his foundation has a working group for a vaccine. Doesn't sound like a man who has renounced his viewpoint!

    The mycoplasma bit is an afterthought:

    His theory about mycoplasma is that it might act as a catalyst (through oxidative stress), not as a cause and he didn't give it more weight than HIV. I think his words have been misconstrued by AIDS denialists. It's always best to go to the source when the subject is politicized or controversial, rather than consult a third party.

    Which scientists?

    ARTs work by inhibiting antiviral replication. Here's a neat little summary.

    In 1991 I was a senior in high school and my friend and I went to see the AIDS quilt. For those of you who may not be familiar, the AIDS quilt was/is a grassroots memorial project. Any person who has died of AIDS can have a little square of quilt, and things about their lives are sewn onto the square.

    The exhibit I went to was only part of the it. It was housed in a large University gymnasium and quilts covered the floor and walls. The sheer number of them was overwhelming. I was determined to look at each one and by the time I was done I was exhausted (and this was when I was healthy!) The number of people there is just a fraction of those who had passed on, and there were so many I couldn't really grasp it.

    This was before ART therapy.

    I don't know why people are denying that HIV causes AIDS but it seems especially tragic to me. I do know that Montagnier isn't one of them! If you read his speech you will see that he is desperate to find a cure.
  19. bluebell

    bluebell Guest

    There has been extensive research into mycoplasma and HIV. That HIV does not cause AIDS is one of the fringiest of fringe theories.

    I think Eliza Maggiore is the best argument one can present that this kind of misinformation is just unacceptable. People can believe what they want, but she was too young to form her own beliefs...

    http://transact.up.seesaa.net/image/elizajane.jpg

    She would be 8 or 9, had she not died of AIDS in 2005.
  20. zoe.a.m.

    zoe.a.m. Senior Member

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    Hi Robin,
    My post was just eaten, but I'll try to recall what I can!

    I look forward to reading the pdf you mention. I'm not sure if that was written before or after the articles I read that quoted him in the 90s.

    I agree that some of what I wrote would be considered fringe to the status quo--it's frustrating that this restricts further research. I always try give a little leeway to unpopular theories, especially those where the MD/scientist lose face for speaking them since that is so similar to what most ME/CFS/FM docs have to face. As this site mentions, the dollars spent on AIDS per year is astronomical in comparison to other illnesses, and you have to do a little research to get past the press that money buys. (I don't in any way mean to condemn ART therapy!)

    The scientists/MDs I've read about are: Montagnier, Shyh-Ching Lo, and Robert Root-Bernstein. I believe it's Shyh-Ching Lo's work on mycoplasma that is considered somewhat groundbreaking and fairly unpopular.

    I understand the premise of ART therapy, I'm just thinking aloud about what other effects they may have on the immune system or other bugs in general. I think I am a couple of years younger based on your age in 91, but I do remember the AIDS quilt project and still how new the illness was at that point.

    I hope I was able to get across that I'm interested in more research that benefits everyone, HIV positive or negative, who is suffering from immune deficiency illnesses. Since the coinfections can be identified and often treated, and because so much is coming out about EBV's potential as a causative agent in many illnesses (not just a benign virus "almost everyone" gets exposed to), I want to see more happen here. There's very little I'm satisfied with in terms of available medical care!

    Again, I want to state that there is no arguing the extended lifespans we've seen for HIV positive people since ARTs, I'm just personally very curious about the possibilities! I also didn't mean to state that HIV doesn't cause AIDS. From what I've read, even the "doubter" scientists are saying that it becomes deadly when a coinfection sets it off, but can lay dormant for close to two decades in some cases until this happens, but I haven't heard anyone call it harmless.

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