That’s my latest CD4 count, less than half the count from six weeks ago.
That’s it. I have tried as many alternative treatments as I can think of to reverse the decline. I will be starting my third round of pharmaceutical ARVs as soon as I can get a prescription and fill it.
This decision has been a long time coming, and in hindsight, I probably should have restarted a few months ago. There’s nothing magical about 97, or being below 100, but it’s as good a breaking point as any. I’ve long argued that there are two things to keep in mind about CD4 counts: one is the long-term trend; the other is single- or low double-digit counts.
No bounce left in CD4 count
For years, my CD4 count has bounced like a ping-pong ball, but that changed a few months ago. It’s been more of a straight line decline since last October, and a drop from nearly 500 in December 2010. Eight of the last nine tests have reported a decline. The CD4% (percentage), which is another way this marker is measured, has dropped from 20% last October to only 9% several days ago. I know some people who dismiss flow cytometry—the procedure used to measure t-cells like CD4—as unreliable, and I plan to debunk that notion in an upcoming post.
My counts have been decling much more quickly for more than two years now.
Look folks, I’m not willing to wait for a serious infection to hit me before taking action. I have unquestionably performed above and beyond due diligence and I have tried many of the most promising alternative therapies. While those treatments may have been beneficial, and may have even slowed the decline, they haven’t managed to halt it, let alone reversed it.
To those who might be disappointed in my decision to restart ARVs: trust me, no one is more disappointed than I am. I might even be a bit discouraged… for about 5 minutes. Then I remind myself that when I first quit these drugs 13 years ago, I didn’t know how long I could go without them… Weeks? Months? I had 2 1/2 years free from them then. The second time I quit the drugs in 2003, I didn’t know how long I could go without them. I never imagined I would have more than nine years of freedom, and I don’t regret a day of it. In fact, I am very, very grateful.
I can anticipate one question from certain AIDS Rethinkers: “Aren’t you making a treatment decision based on laboratory markers alone?” Yep, I am. The alternative is to wait until I get PCP or KS or some other weird infection that people with more robust levels of these cells are not likely to get. We AIDS questioners have seen what happens to those people who insist on avoiding the drugs at all costs and I don’t like the odds I’ve seen.
I don’t know what these drugs do, and I seriously doubt that they are truly “antiviral”, but they do have some effect on specific immune markers, such as CD4 cells, and their ability to rescue some extremely ill Affected people from the brink of death is indisputable. I freely acknowledge that taking them solely based on CD4 count is a far less certain choice; in fact it’s little better than a crap shoot. There are potential risks, regardless of the decision and I’ve just chosen to cast my dice on another round of the drugs. I pass no judgement on those in a similar boat who choose a different course.
Return of Intermittent Therapy
I don’t plan to take ARVs for the rest of my life. I don’t plan to take them any longer than I feel necessary to achieve an as-yet-undefined point of restoration of laboratory markers. In the early 2000s, I was attracted to the notion that a poz patient might be able to cycle on and off of the drugs. This theory was coming from the AIDS mainstream shortly after combination treatments became popular, and though it didn’t last very long with the orthodox AIDS folks, I have not yet completely dismissed it as a possible option. The concept wore different names: Structured Intermittent Treatment/Therapy (SIT), or Structured Treatment Interruption (STI). I am just picking up where I left off. How long will I need to take these drugs to increase my CD4 count to a level I’m comfortable with? That’s what these drugs are designed to do.
I am re-evaluating my goals and objectives. I want to minimize my risk of adverse effects. I don’t know yet what that means, exactly, but I’ll keep everyone informed. I may do some other crazy things, like reduce the dosage, or take them less frequently.
There are a not insignificant number of people who are playing with variations of STI/SIT. I’ve corresponded with people who are taking their drugs at half dose, for example. Others have told me they quit their drugs altogether, but take them for a week before doctor visits, just to make sure the drugs will show up in their blood tests. And they’re getting away with it. Unfortunately, it’s impossible to draw any meaningful or useful conclusions from such haphazard occurrences.
Don’t blame the AIDS dissidents
[pullquote]
AIDS dissidence did not convince me to quit my ARVs… it was my own decision to quit AIDS drugs that led me to dissidence.
[/pullquote]I had never even heard of “AIDS dissidence” when I quit the ARVs in 2003. I quit ARVs twice since my diagnosis in 1998; first in 2000, and again in 2003, before I had even heard of “AIDS dissidence”. It was only after I had decided on my own that the drugs were too risky for me personally, that I started looking for information and trying to meet others who had made the same choice and of course, I stumbled onto the so-called AIDS denialists. AIDS dissidence did not convince me to quit my ARVs… it was my own decision to quit AIDS drugs that led me to dissidence.
I never intended to be as involved in the community of AIDS dissidence as I’ve found myself to be. I was asked to be a moderator at the forums then known as AIDS Myth Exposed, which has been renamed Questioning AIDS. A good name, if you ask me. Just like many of the folks on the orthodox side of AIDS, we admit that there is much we do not yet understand about immune dysfunction.
The role of role models:
I chose to tell my personal story as a form of journaling and therapy. It was never my intention to become a role model for others who are Affected with a HIV-positive diagnosis, but I can tell from the emails and messages I get that some people see me and others who are resisting lifetime ARV use as exactly that: role models. Too many of the role models in AIDS dissidence are gone, and not necessarily because they did not take their drugs: Christine Maggiore; Emery Taylor; David Collins; Karri Stokely; and most recently Maria Papagiannidou are some I know of personally. There are others.
David and Maria did take ARVs. What we don’t know is whether they waited until it was too late, or whether they had a disease process that not only did not respond to the drugs, but was actually hastened by them.
Yes, the ARVs can also kill people, and they do. When my friend Mark Cheney died several years ago, his doctor confessed to me that he had never seen such a case of simultaneous multiple organ failure, and that the cause was undoubtedly the so-called “salvage therapy” attempted with AIDS drugs.
The main reason I intend to continue to tell my story is in hopes that someone can find a way to put the pieces together. I’m pretty sure that there is a way to manage “AIDS” that does not require a lifetime regimen of toxic drugs, but may require intervention with them at some point. I don’t expect to discover “the answer” on my own, or even in my lifetime. I do know that the AIDS establishment is not going to discover the answer as long as they are so beholden to the profit-driven, “free-enterprise” pharmaceutical industry.
That means it’s up to us, the Affected, and the only way we are going to learn is for more of us to share our stories and our experiences. What good are role models who don’t inspire others to share their own stories?
Hit it hard, hit it early?
As I review my own expectations around SIT, I realize that I first started ARVs within weeks of seroconverting (testing HIV-positive). I know because I have a negative test result that preceded the positive one by just a couple of months. This may be one critically important factor in the success or failure of structured treatment therapies. In an article written for TheBody.com in 2000 (which now carries a disclaimer warning of out-of-date information), Dr. Mark Dybul, MD discusses this: (.pdf version also archived here for posterity.)
There may be a difference in the impact of STI as immunotherapy based on when a person initiates effective HAART, i.e., during the earliest stages of disease (primary infection) or during later stages (chronic infection). HIV-specific CD4 cells may be important to mount and maintain an effective CD8 cell response. Unfortunately, except in a minority of individuals, HIV-specific CD4 cells do not seem to be functional after primary infection. But if HAART is initiated prior to seroconversion (i.e., a positive HIV antibody test), CD4 cell responses to HIV seem to be preserved. Therefore, people who begin HAART in the earliest stages of infection may have more potent boosting of CTL with STI.
Call me a conspiracy theorist, but I wonder if the promise of STI/SIT got buried under the flawed SMART study and the influence of Pharma, which obviously has no vested interest in patients doing without their drugs. The concept that ARVs, used sparingly and intermittently, might be able to help a patient “train” their own immune system to deal with HIV (yes, yes, assuming HIV really exists), a sort of auto-immunity, is intriguing. This concept was dubbed “auto vaccination” in the late 1990s. Again, I’ll let Dr. Dybul explain (though you might want to read this study from the journal AIDS, too):
It has been proposed that if plasma HIV RNA is allowed to resurface in a structured, sequential manner, it might be possible to augment HIV-specific immune responses. The thought is that with each cycle off drugs there will be a stepwise increase in the immune response as the host is again exposed to a certain amount of plasma HIV RNA and that the immune response will not be diminished with the resumption of HAART since the on-drug period is relatively short. This is called autovaccination, which means using one’s own virus to boost immune responses.
To be fair, these are just some excerpts from the article, which is worthy of a complete read, something you won’t hear me recommend about TheBody very often.
Thank gawd for Cipla Pharmaceuticals and the Internet
Now that I’ve decided to resume ARV treatment for awhile, I am finding that I fall through a gap in the social safety net big enough to swallow my now-defunct 2000 VW Golf! I have been eligible for Medicare since 2004, and thanks to my partner, I have always carried supplemental insurance, as well as prescription drug coverage (Part D). Since quitting nearly all pharmaceutical drugs a few years ago, I have never even met the deductible of my drug plan, and this year I opted for a very inexpensive “Walmart” plan. This plan has four “tiers” of drugs, with each tier evoking a higher copay. To make a complicated tale simple, it looks like I will have to pay 50% of any AIDS-related drug costs.
I won’t know which drugs I will be taking for a few weeks yet, but the most frequently prescribed ARV in the United States is Atripla, a three-drug combo in a once-a-day pill form. Atripla costs $1,600 per month, meaning my share will be $800 per month, or nearly $10,000 per year. My SSDI income last year was $13,100, and that is before paying for my supplemental and Part D premiums. I also receive about $10K of income per year from a private disability plan that I purchased long before I tested HIV-positive. Other combinations are similarly priced, and I cannot afford any of them.
The only way to qualify for my state’s AIDS Drug Assistance Program (ADAP) is to apply for Medicaid, a federally funded assistance program for those in poverty, administered by the states. I would probably qualify for this program, but there’s a catch. Any expenses paid on my behalf by Medicaid are subject to the Medicaid Estate Recovery Program, which attempts to recoup costs from a beneficiary’s estate upon their death. This mean that if Medicaid pays $10K per year for 10 years, they can seize $100K worth of assets in my “estate”. In my case, this includes half the house that my partner lives in (and mostly pays for), as well as my 14-year-old pickup. More seriously the $85K whole life insurance policy that Michael is paying the premiums on is fair game.
Now, I don’t mean to be greedy, but Michael has been supporting me for 13 years. He is paying the life insurance premiums. It doesn’t seem fair for Medicaid to lay claim as the beneficiary. They haven’t even offered to pick up the cost of the premiums!
Our other option is to buy generic versions of the drugs, manufactured by Cipla Pharmaceutical in India, via an Internet pharmacy (probably one in Canada) for about $150 per month, less than 10% of the cost from an American pharmaceutical company. Pretty effing incredible, isn’t it? I have seen the looks on faces of friends who live in more civilized countries when I try to explain this to them.
American health care workers typically respond to me by saying: “but these drugs are not FDA approved”. Like, do you think I’m impressed with that seal of approval? Cipla is the largest manufacturer of ARVs in the world. Do you really think they would put their reputation at risk by producing inferior drugs? And by the way, what has the FDA done to make me feel confident that I can trust them, anyway?
Besides, I kind of like the idea of supporting a country that recently decriminalized homosexuality and builds a decent car for $2,500. That’s considerably less than two months worth of Atripla from Bristol-Meyers Squibb and Gilead Sciences. John Martin, CEO of Gilead, is the 10th highest paid pharma CEO, at $14.2M and thanks in no small part to Atripla sales, Gilead’s net income rose 10% in 2010 to $2.9B.
Heck, just writing about that is enough to twist my gut and make me sick.
83 Responses to “97”
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It is insane to take your CD4 counts seriously and poison yourself with ARVs. I don’t know where your head is at but nothing you say above provides justification for what you are doing.
I couldn’t believe the above comment, so I verified that it really is from THE David Crowe. I’ll respond in another post someday.
Mr. Crowe, have you tested HIV+? If not, then I cannot believe that you feel justified to chastise any HIV+ person about this decision. Mr. Barnett is well aware of the many dissidents who have suffered failing health and/or death under similar circumstances, yet you expect him to IGNORE those examples so that he can follow your dogma?
Mr. Barnett has already tried many alternative techniques. They are not working. He is reluctantly taking ARV’s to level out his health in terms of numbers and with the parotid gland swellings. This is not a decision that he is taking lightly, or without research. He has done his homework.
I’m bothered by the fact that so many prominent dissidents are HIV- and have no real, health-related stake in this issue, yet they continue to badger and attack HIV+ dissidents who are faced with real-time, life and death decisions. I have corresponded with Celia Farber, Peter Duesberg, and many other prominent HIV- dissidents, and they all remain dogmatic and argumentative despite evidence I present that contradicts their beliefs. They have no dog in the fight. They are not going to die an AIDS death, so they have no worries about whether their theories about moldy rooms and depression and AIDS zones are correct.
It’s laughable.
I was in a doctor’s office with a recently diagnosed HIV+ person a year or two ago and the doctor assured him that the CD4 count indicated your CURRENT health status. This is the standard dogma. Therefore, the fact that your CD4 counts have declined so much WITHOUT getting PCP, KS etc. is proof that the CD4 counts are bunk. CD4 counts are supposed to indicate the CURRENT health of your immune system, unlike viral load that is supposed to indicate the amount of virus attacking you, and therefore is a forward looking indicator. In other words, with a CD4 count this low you should, according to the dogma, already have PCP and/or KS. And you don’t. So the dogma must be wrong.
With logic like that, David, it is small wonder that AIDS dissidence hasn’t gained much credibility. Declining/extremely low CD4 counts do not cause disease. Having a distressed/imbalanced immune system could make one more vulnerable to not being able to fight them. CD4 count is but one measure, and it’s the one that is most commonly checked. I have repeatedly reported the other indicators that I am dealing with and also taking into consideration when making this decision.
BTW, you have absolutely NO room to talk about anyone elses dogma! You have just confirmed what I’ve suspected about you and the organization you represent for some time. You are as dogmatic as the AIDS orthodoxy, but you have even less scientific evidence supporting your “beliefs” than they have.
Jonathan, I absolutely get how passionate David is about the toxicities of these drugs, but you already know this yourself very well, both from experience and your own research. You also have witnessed others with low counts suddenly go from OK to death’s door while ARV-free. Me too. You are wise to be alert to the possibilities. I might be more circumspect with another, less educated and experienced person, but I maintain that it is your body, and since your experience of your own health indicates a correlation, however imperfect, between higher CD4 counts and improved quality of life, we all just need to trust you here: You are the only expert on YOU.
Carl,
I’ve always been very grateful for all the support you’ve shown me over the years.
I’m very concerned about the potential risk of taking ARVs again. I also know (and have written about the fact) that the t-cells that result from ARVs are often “puny”, compare to normal t-cells.
I realize that it must seem I’m obsessing only on CD4 count, and that is simply not the case. These latest and lowest number are the straw that broke the camel’s back, but there is a whole lot of history, documentation, research and other factors being considered, and I’ve been quite verbose about sharing them on my blog for more than three years now.
The bottom line is: My quality of life is such that I am willing to do just about anything to get my energy back, and I am at my wit’s end. I’m willing to try a few months (that’s my hope, and perhaps wishful thinking) of ARVs to try to achieve that.
Well, when I discovered the dissident movement 7 years ago, I immediately quit the drugs. It wasn’t long till strange things started happening to me. By the time 2 1/2 years had passed, I was extremely ill. I couldn’t eat without regurgitating, had a terrible cough for no apparent reason (I did not have pneumonia), extreme fatigue, and rapid weight loss due to not being able to eat. My bloodwork, which had been fine on the drugs, got really strange with low RBC. WBC, and platelets. My liver function got seriously bad, which I thought was strange, since I’d been off the drugs so long, and my ferritin level was more than 10 times the upper limit. Clearly there was something very wrong.
I saw every kind of alternative practitioner imaginable to no avail. I took all the supplements that were supposed to help. In desperation, I went back to the ID doc at Duke and was put on Atripla, practically kicking and screaming and with no hope it would do any good. But it did–very quickly. I seriously doubt I would be here if I hadn’t taken it. At the time, my CD4 count was 46 and VL over a million. With me, it’s very clear that bad “numbers” closely correlate with ill health. Recent attempts to get off the drugs have not been successful, though I concede I may have given up too soon. I don’t discount the possibility that taking the drugs in the first place could have done something that made it hard to get off them, but I didn’t know there were alternatives at the time.
So in my case, I can state with reasonable certitude that those drugs saved my life. I intend to continue to explore other options, but so far the “poison” is the only thing that really helped me. I understand this could change at any time and am prepared to make changes when necessary.
I wish you the best of luck, Jon. I know you have done everything imaginable to stave off this day, and I support your decision completely. You are not doing this lightly or irrationally and I know it was a very difficult decision.
Linda, your low WBC and platelets (thrombocytopenia) were probably due to some internal bleeding … this bleeding could have been caused by taking antibiotics … and the resulting effect would have been candida, which indicates lots of health issues. TTP and ITP are very common, especially with people who tested positive on an “HIV” antibody test.
Linda
Your first sentence reveals something just as relevant to your subsequent health as anything else. But the follow up implication you make ‘I quit the drugs, then after two and a half years became extremely ill, so, ergo, dropping the drugs was a mistake.’ just does not follow.
First of all, every individual and their personal history are different and so even implying a relevance to a generality is lazy minded. There is no way of knowing what had been going on in your body years, decades even, before and there are a 1001 reasons why you could have been facing ill-health. What we do know with near-certainty is that it had nothing to do with something called ‘HIV’ and yet and yet you insist on buying into it when deciding what kind of treatment you choose, and you still bandy about CD4 markers (not used in any other field of clinical treatment) and ‘Viral Load’ or ‘HIV RNA’ – the two pieces of fiction thought up by the orthodoxy – as if they represented hell-on-earth indicators for your existing or potential health, and ignoring the myriad other indicators with far greater evidence for their usefulness.
Steve,
What part of “I tried everything possible and nothing worked” do you not understand? I just kept getting sicker and sicker, no matter what kind or practitioner I was seeing or what natural means I employed. No, I don’t think it’s likely a virus worthy of the name HIV exists, and I didn’t pay much attention to surrogate markers until they bit me in the ass. I don’t know what these drugs actually do, but I’m still here and that’s a plus. My health very closely correlated with my numbers. Can’t say which came first–I suspect it was illness which caused the markers to get out of whack. I’ve been around and around with this on QA and AME before it am am bone-weary of trying to defend myself. I’m doing what works for me while searching for other answers. That’s it. I’m not discussing it anymore. My eyes are wide open and I’ve carefully weighed my options.
I have to say as someone who believes that David Crowe has dealt massive damage to the international ‘HIV’ dissident movement over the last several years, he is none the less spot on when it comes to the issue of taking extremely toxic chemotherapy for a change in dubious surrogate markers in the absence of actual ill health.
The simple fact that no person who does not reactively test on a so-called ‘HIV’ antibody test would ever have their ‘CD4’ numbers and percentage measured is in itself simple but clear support for the view that it’s bizarre to take such drugs on that basis.
And not one single word of support for such a position either can be found in any of the papers of the Perth Group, or even those clinicians who question the ‘HIV’ theory of AIDS but do believe short term focussed use of certain types of anti-HIV drug can benefit people with specific cases of serious ill-health. That clearly is not the case here. So let’s not have any attempt to pretend their is any clinical or scientific basis for using these drugs in the situation given, which is a prophylactic one and there is a mountain of evidence for the very very serious potential danger in the prophylactic use of such drugs.
Of course, any individual has the right to make such a decision no matter what the underlying emotional or philosophical motivation, and no matter how weak or even non-existent the clinical evidence is to support it. It is a human right. But it is also right that when such a decision is made publicly in a manner suggesting it helps others, that the counter arguments to that position are also publicly aired to help others.
Thanks for using your real name, Steve. As much as we agree upon, I guess this is just one gamble I’m not willing to take and we’ll have to agree to disagree.
BTW, the only thing I’m encouraging others to do is due diligence before making any decision as significant as this one.
The gamble is in your head Jonathan. And I say that in all seriousness. Enough time has passed since the announcement of the ‘HIV’ theory of AIDS to see the ill-health and death caused by the psychological terror it invokes alone, let alone the ill-health and death attributable directly to taking ‘anti-HIV’ drugs.
As much as I have serious disagreements with many dissidents on dissident activism, strategy, leadership and its politics – with people like Brian Carter for example – I also have significant agreement with them on the psychological damage that leads to many cases of ill-health and death arising from being trapped even half-in, if half-out, of this ‘HIV’ Zone (call it what you like ‘AIDS Zone’, the ‘Hex’) because that is what this ‘one gamble’ you aren’t prepared to take represents.
It has no logic and it has no scientific nor clinical basis.
CD4 markers and the flow cytometry associated with it are seriously deficient (and yet they are *exclusive* to ‘HIV/AIDS’!) or they would be used in a host of other cases, and they are NOT.
In your case Jonathan, maybe you should just accept that you have a history of ill-health that precedes ‘AIDS’ by a long way, and probably has nothing whatsoever to do with it; was probably made worse for the long term by your anti-HIV drug use in the past, and maybe you devote far too much head time to it. Your case is far from common in the field of ‘HIV’/AIDS’ and should never be seen as anything but an exceptional one, and that it holds no real relevance for the vast bulk of people affected by the ‘HIV’ theory. There are a handful of other known public cases of people who had ill-health from childhood, as well as ending up with some common lifestyle factors, and just got trawled in by the ‘HIV’ testing net but whose ill-health is not relevant to the ‘HIV’ theory.
I have addressed most of these issues in this and previous posts, and I agree with much of what you write. For example, I do think there are many people who have tested “HIV-positive” who are at little-to-no risk of ill health, barring cofactors or lifestyle risks. You can put “HIV” aside. I’m not doing this to “fight HIV”, and have never said that I was. Please do not put words in my mouth. I get into enough trouble with the words I do write! 🙂
Some people think I should not even consider taking ARVs UNLESS and until I get KS or PCP. I have previously related my extensive history of susceptibility to infections. You consider my judgement to act preemptively to be based on something other than reason and logic, though I have been meticulous about explaining my rationale.
The real argument should be:
a) whether or not I am at risk for one of these original AIDS-defining illnesses.
b) if so, will my odds of recovery be better by waiting until said illness manifests?
c) am I allowing for psychological influence and trauma.
d) and finally, the one issue that is fair game for disagreement: is a long-term decline and/or extremely low CD4 counts predictive of susceptibility to more illness.
What I’m not hearing are suggestions for what I SHOULD do, though I can infer from both you and David Crowe that I should stop these tests and do nothing other than live a normal life.
Do you also recommend psychiatric evaluation and assistance to overcome my irrational fears?
How is it that I am the only person accused of being fixated on “AIDS”, while Crowe is President of an AIDS dissident organization, and you somehow manage to opine on the topic on websites, forums and comment threads all over the web?
Some of your other comments are also sorely lacking scientific proof, or even evidence, but I will keep them in mind for future posts. For now, I’ll just say that the bone-pointing shaman has no power over the educated tribe member who knows better, and that Clark Baker’s treatise on flow cytometry is bollox, to put it mildly, if that is what you are referring to in your comment.
Did you really say flow cytometry is not used in any other disease than “HIV/AIDS”!? I expect much better than that from you, Steve.
Jonathan
No I did not say FC is used exclusively in ‘HIV/AIDS’, I said that CD4 markers are, and you know that. CD4s are not used for any other illness and you know that too. FC, the technology used in CD4 interpretation is full of holes in that specific use. But it is the CD4 marker itself that is mostly useless and was known to be more than two decades ago and has been questioned by 1000s of clinicians. Maybe that’s why it is only used in ‘HIV’ since, alongside the other piece of garbage – ‘Viral Load’ – it is used almost exclusively for prescribing toxic chemotherapy for people deemed to have a killer virus.
No I am not referring to anything by Baker who I have no truck with in general.
You paint yourself as some kind of dissident’s ‘dissident’ (or martyr, I don’t know which really) yet nothing could be further from the truth. Your almost exclusive gripe is around this very question of CD4s and in the context of the ‘HIV’ theory of AIDS it is mostly irrelevant and, dare I say it, self-indulgent in the extreme. You say nothing noticeably different to the general run of ‘RA’ type dissidence, and you are clearly no threat to the current failed dissident leadership, and you engage just like Crowe in bashing the Perth Group supporters such as Anthony Brink, Chris Rawlins, Claus Jensen and myself, notwithstanding that Brink especially, Jensen in the HIV symposium, and Rawlins and Gene Semon and others have provided an analysis of the science of the ‘HIV’ theory and the toxic drugs that leaves your contribution parochial to say the least.
No one has said you are ‘fixated’ with ‘AIDS’ Jonathan – you are simply fixated with your own health and you extrapolate it to some unreal significance in relationship to ‘AIDS’ – that is quite different.
Jonathan, i don’t think you can get KS unless you have had heavy exposure to nitrites and/or semen, right? if infectious diseases don’t discriminate, then why do only men (gay men) get KS?
Evidence and citations, please, Alex. I know this is considered gospel in some AIDS dissident circles… to the point that people who developed KS, despite their insistence that they’ve never used poppers are accused of lying about it.
I use KS and PCP as examples of the most commonly seen illnesses in people with very depressed immune systems. There are many other possible candidates.
JB,
Just as a point of clarity, what Alex provided is flat out fabrication. Magic has been on the cocktail since the clinical trial days of 1994. He also runs an HIV outreach organization and has served as a spokesperson for Glaxo Smith Kline on the benefits of ARV therapy and making it more widely available.
http://www.usatoday.com/money/industries/health/drugs/2003-01-20-magic-glaxo_x.htm
http://www.usatoday.com/news/nation/2006-11-30-magic-aids_x.htm
http://www.huffingtonpost.com/2011/11/08/magic-johnson-hiv-20-years-later_n_1081752.html
Robby: Just because Johnson tells USA Today that he takes the ARVs doesn’t mean he takes them. The fact is: no one but Magic Johnson knows whether or not he is taking the drugs, or whether he is taking them intermittently.
What is pretty apparent is that Johnson is getting a ton of money from the pharamceutical sponsors to deliver a message, and if he doesn’t stay on point, that income is in jeopardy.
It is also obvious that he can afford just about any kind of medical and health care he desires… an advantage most of us do not have.
JB,
One of the few things we can agree upon is that the bioscience and pharmaceutical industries need to make greater efforts to make ARV’s affordable. Either that, or I think the US Government needs to make a greater effort to ensure that people are not driven into poverty to facilitate their treatment.
Since, as you know, I am currently in the employ of GSK, It is probably unwise of me to elaborate on my views further in this public setting, However, I would be happy to do so in private if you wish.
Why should the government (read us taxpayers) subsidize one of the most profitable industries, after military vendors?! Please don’t tell me they need the profits to stimulate R&D. I simply don’t “buy” it.
Why are you and some other AIDS cheerleaders so eager to meet with me privately? Just because I’ve resorted to taking ARVs as an option of last resort does not mean I want to be your friend all of a sudden. You were cruel and obnoxious before I restarted the ARVs, and I don’t know why a personal decision on my part would make you any less so now.
If you’re not willing to criticize and stand up to the abusive profiteering of GSK because your livelihood depends on it, for example, you should hang your head in shame. You’re part of the problem, not the solution.
JB,
I am simply applauding your proactive and objective positioning regarding your treatment and health. Nothing more, and nothing less.
As to why I won’t publicly criticize GSK? That would be fairly unprofessional of me for one. Secondly, since I have only been working there for 3 weeks, It would be presumptuous of me to make sweeping generalizations on how it operates based on what I may have read in the media.
Thus far, my dept head, and most of the other researchers and techs I have met have been very professional and passionate about the work they do. It is very rigid to be sure, but still a positive work environment.
Is it my dream job? Of coure not, but its only an internship and a chance for applied learning with some very bright folks. Considering the job market in science (especially in the KC metro), I feel very fortunate they hired me on. There was over 150 applicants for 12 intern positions.
Aside from pricing that I mentioned above, I do not have a problem with how the company conducts its work.
My decision to restart ARVs should not be applauded as either proactive, or objective, Robby. It’s is an act of desperation and a crap-shoot. What you promote is not a short-term intervention, which is what I’ve undertaken, but rather an official policy and practice of prescribing lifetime therapy, even to people who are not sick, based solely on a poly-reactive antibody test, developed by a known crook.
You are so proud of the “science” you have learned in a field that is heavily influenced by financing from the very profiteering industry you are now effusing over the opportunity to gain “applied learning” from. The system you are reveling in disgusts me.
That you were chosen for paid internship from a large field may speak more about your potential for malleability to the system than either your intelligence, or your ability to achieve greatness as an independent and free-thinking scientist.
I’m just sayin’….
So … Christine Maggiore – a white, wealthy, heterosexual, HIV+ woman with a vegetarian diet and no pharmaceutical use – suddenly dies of pneumonia after 17 years of relative health … was her death also attributable to the “AIDS Zone?”
It’s time for dissidents to wake up. And I’m saying that as one myself.
Maggiore represents the one huge elephant in the room that dissidents refuse to consider. They like to blame her death on depression, not getting enough sunlight, moldy rooms, ANYTHING except a disease process. Why are people so unwilling to look at evidence dropping dead right in front of them?
I’ll tell you this much – Magic Johnson has been taking medications for more than twenty years, and he just bought the Dodgers. Maggiore refused the medications, and she bought a small plot of land six feet under. I’m sorry, but there is much that dissidents do not understand or refuse to see when it comes to this issue.
fyi, magic johnson only took ARVs for the first month or so after he got the positive antibody “HIV” reaction … for the past 2 decades, he has done “alternative” treatments.
Alex,
Please provide some evidence for this statement. I almost didn’t approve it, and I am going to start disapproving blanket statements that are not supported with some documentation and evidence.
With all due respect Steve. The gamble is not all in one’s head. Both Jonathan and I can attest to the many lives lost because some of our friends and associates refused ARV treatment regardless of how severely ill they became. I can say that virtually every single one of my ‘HIV’ positive friends here in Toronto who refused all ARV’s is dead. They were not in the ‘aids zone’ or under some kind of ‘hex. They were thoughtful, informed people from all walks of life who genuinely believed they could restore their health without ARV’s. They all died before they could assemble anything remotely resembling an effective approach. Mostly, only those that have used them judiciously when faced with an unusual decline in health have survived. This is a subjective experience, but it is compelling when these same folk also first exhausted many alternative approaches before dying. This is not to say that ARV’s don’t also kill people. I’ve seen that more often that I can count. But rather than simply judging Jonathan’s approach, find a patient with the similar health history as Jonathan who has overcome similar challenges without using ARVs. Make sure it is documented. This would be helpful. Anything less is not. And this is where AIDS Dissidence INC has failed so miserably. There is no coherent effort to collect and share such data that I know of. As a group we prefer to steer people away from ARV’s and HIV tests, but without considering what we might offer the Jonathans of this world by way of documented, alternative paths to healing.
Carl makes a good point. AIDS dissidents have failed their own movement miserably by neglecting/refusing to document and assess their own health and attempts at natural treatments.
I was absolutely furious with the cover-up surrounding Maggiore’s death. Christine (with whom I had spoken and argued for a couple of years prior to her death) was meticulous and candid about her own health issues and her lifestyle choices. Until, that is, she became ill. Then, she became mysteriously silent during her last year while Robin Scovill and Celia Farber circled the wagons by failing to get a proper and official autopsy and making up excuses for her death by saying she died of depression. What could’ve been a defining moment scientifically was lost due to fear and paranoia and an ego-driven lust for power in this movement.
I imagine that the last RA convention had to be cancelled because most of its members were not buried in the same place. Given the fact that most of the people featured in it are dead, perhaps Scovill should rename his documentary “AIDS Patients Who Have Passed To The Other Side.”
It is intellectual stupidity for these HIV- people like Rasnick, Farber, Duesberg, Crowe, etc., to continue to ignore the direct correlation between HIV+ status and eventual death from lymphoma/pneumonia without treatment among HIV+ dissidents. In fact, they have ignored/obfuscated this fact so loudly and blindly that I wonder if they aren’t actually insane. Either that, or they have some sort of financial/professional stake in AIDS dissidence.
I wonder how much we could’ve learned from Christine’s last few years if she had (a) properly documented Eliza Jane’s health status, and (b) documented her own health decline. Christine was the perfect model for someone who should’ve lived if the dissident theories were correct, yet she died from pneumonia anyway.
Sad that we will not know.
From The Perth Group’s Q&A on the Questioning AIDS forum, dtd December 21, 2011:
You are cherry-picking Jonathan and it has no relevance to the wider issue of the virtually fraudulent use of CD4 markers for toxic drug prescription. You already know that and Perth do not support such clinical practice. Who knows what possible beneficial effects targeted short-term use of anti-HIV drugs might have? (Perth refuse to call them ‘ARVs’ since they state clearly there is no evidence for a retrovirus called ‘HIV’ and that is the sole reason for those drugs use). Research hasn’t been carried out even remotely sufficiently to measure the benefits against the damage they cause. In those who take them and derive some benefit, all well and good and as Tomas says ‘It’s My Life’ and it’s an individual’s decision.
But Jonathan, please don’t lecture those who have analysed the scientific and clinical data just as much as you (and some much more so than you) and who question their use in the vast majority of situations. You sometimes come off like a big cry baby and it’s the whole world that is wrong bar you.
And now you are nit-picking, Steve. Your personal dislike of me is quite apparent, and we know that is the case from a rather lengthy and unpleasant history of private correspondence. Don’t think I have forgotten the time you referred to me as a “pygmy” of “AIDS dissidence”. I don’t need your lectures or pompous attitude, either, so I hope you’ll forgive me for making this the last post from you that will be approved here. I think you’ve had plenty of opportunity to make your points, and that anything more would not only be unpleasant, but a waste of both of our time.
You have made my point so well Jonathan – you really are an intellectual and moral pygmy and it is seen through your own behaviour here. Your dishonesty, hypocrisy, two-faced shit-stirring and breathtaking censorship tell it all.
Steve: Just to prove that I can change my mind, I am allowing one more post from you. This one. It does a lovely job of putting your other comments here in context.
We could all play that game if we chose. It’s your default setting Jonathan.
Flow cytometers are used in association with other diseases. The reason the CD4 count is so closely monitored in AIDS and not in other diseases, is that the disease causing AIDS targets CD4 cells in preference to other immune ones. So the obvious damage is reflected there.
Conversely, in other diseases B cell count or eosinophil count is monitored. The same technology is used, just with a different marker.
CD4 was discovered before AIDS. It was just observed that AIDS patients had selective declines in CD4 cells.
approved
There is no scientific data to indicate what you are suggesting, other than The Perth Group snippet that JB linked to earlier. The CD4 marker technology was developed at about the same time as illnesses first described as ‘AIDS’ were seen in the west. There are a multitude of immune disorders that should, logically, also be subject to CD4 marker testing – if you believe the rationale for it, but they are NOT.
Outside of the special world of ‘HIV’ medicine – narrow and extremely unskilled in comparison to other disciplines – the CD4 marker testing is looked down on with barely concealed contempt.
Even the most cursory search with Google shows you are pulling information out of…. er, thin air. You’re just making things up, Steve.
Try searching CD4 t cells +:
Crohn’s
Arthritis
Autoimmune
Lyme
Cancer
In fact, I just called my lesbian friend who has Lyme and she confirmed that her doctor tests CD4 and other t cells, among many other markers.
I suggest you do what you have criticised many others for not doing (and threatened, as you are generally prone to do anyway, to censor their posts if they don’t) and provide the actual links. Only then will I believe you JB.
With your new orthodox friends like JTD et al, you are sounding more orthodox as every day passes.
In fact, almost from the moment I came across your posts I found you more orthodox under the skin than you like to project, but perhaps mostly just very confused.
I do genuinely wish you well personally, health wise, but I wouldn’t miss your craven dishonesty and two faced protestations about civility one little bit. With questioners/dissidents like you who needs Gallo?
And all these dissident orthodox drug takers creeping out of the closet – what a difference a day makes when you discover you have no backbone. And just to remember that some of them were the very same who wished to attack and trash the life and memory of someone like Emery Taylor, who did stick clearly to his own view.
Wow. How is anyone supposed to take you seriously, Steve? You don’t know how to compose a 4-word search string into Google?
You’re really showing your true colors tonight.
Let me get this straight. Emery Taylor is to be admired because he refused to take ARVs until it was too late, despite developing Kaposi Sarcoma and other infections?
That is the reason I should also refuse to take them? Keep that superb logic and reasoning coming.
Second thought, please don’t. I’m feeling embarrassed for you and to spare you any more humiliation I’m not going to publicize your next tirade and rant.
I’m finding it interesting, if not humorous, that both AIDS apologists and AIDS dissidents are challenging me on the basis of my sanity.
A politician friend once shared with me that when outspoken advocates on both sides of a controversial issue are tasking you, you’re probably very close to being in the right place.
That comment from David Crowe is pretty shocking. He doesnt seem to have a basic understanding of what a t-cell does and how important it is to have them in good supply. Should you allow your count to get down to 10 or even 1 because you happen to “feel” good at the moment? Lots of people feel good and have good health in the moment and they are dead in a week or even a few days. Ive been a dissident for 15 years, it seems to be more and more narrow minded.
AIDS dissidence—at least as represented by its arguably most prominent and best funded scientific organization—has squandered many opportunities to provide answers. Instead, they are focused on creating a new dogma that cannot exist without the failings of the orthodoxy.
Nothing wrong with pointing out the flaws of the mainstream science, but that does little to help those of us who are actually dealing with failing health that does indeed correlate with things like the imperfect and polyreactive Gallo antibody tests; flaky and imperfect lab markers; and a variety of manifestations that seem to share little in common, but which do seem to cluster, based on risk groups.
You are right: several Affected people “felt fine”, only to discover a week later they had KS or PCP or some other serious illnesses that people with healthy immune systems have no problem dealing with. There is little doubt in my mind that once a person develops one of those serious illnesses, the path to recovery is much more difficult and the odds of their survival are greatly diminished.
Hi Jonathan,
I don’t know your full story … This is my first time to your site … Have you considered the following:
1. Since it seems that cd4 count is mainly or only looking at fatty acids, have you considered increasing your “good” fat consumption? For “good” fats, I mean coconut oil, olive oil, hemp oil, flax oil, oil/fat from animals (ie, beef, pork, fish, etc), and real butter.
2. Have you had issues with candida? Have you taken lots of antibiotics over the years? I’m asking only because they could contribute to your cd4 decline …
3. Do you have internal bleeding issues? How is your WBC and/or platelets?
4. Have you read Tony Lance’s article on intestinal dysbiosis? I think he is spot on when it comes to getting some answers to why people who have never taken drugs or poppers still become very ill … And Roberto Giraldo’s work as well.
Thanks,
Alex
Alex, I’m an open book. Most of your questions have been answered in my blog. You can also find much more documentation by clicking on the “attachments” tab at the top of this page.
Linda, with all due respect Antiretroviral drugs do not save lives they destroy, even the real problem that made you sick cannot put up a fight with the toxicity and pro long use of the ARV death pills. Keep in mind that your immunity to the poisons will fade and that they disclaim themselves from any antidote as a Black Boxed Drug. Jonathon, bro as I have always said: “It’s My Life” and your decision.
Tomas, I have to beg to differ. While I continue to oppose ARVs for long-term, or lifetime use, let alone as prophylaxis, I have seen people brought back from the edge of death with ARVs, and I have seen others die because they either refused the drugs, or waited too late.
Secondly, there is no single rule-of-thumb about the use of these drugs that apply to all people in all circumstances. If AIDS dissidence, or the leading “scientific” dissident organization wanted to make their mark, they would be funding experiments to help us find more and better answers about the role of ARVs that have obviously helped some people stay alive longer.
I completely understand the concern some of you have about me making my decision prior to developing a clinical “AIDS-defining” illness. That’s fair game. We’re all fucking guinea pigs, and this little piggy isn’t waiting for the KS lesion, or ER visit for PCP before trying a short term round of chemo, along with as many supportive alternatives to minimize the toxicity as I can muster.
Tomas, I understand your position and don’t dispute the toxicity of the drugs. I would like nothing better than to be healthy without them. I tried everything, as I said, and I will not be martyred to the cause like others, especially the high-profile women we have lost. In order to pursue health, I have to still be here, and I can tell you that I came quite close to death twice. The drugs have saved my life twice, which is not to say I won’t continue to pursue other answers. So far, I have not found them and I enjoy quite a good quality of life right now. Having descriptions of “death pills” thrown in my face does nothing to alleviate the stress of the situation. I’ve been dealing with this since 2001 and am not ignorant of all of the ramifications.
Linda: Your clear-headed approach is a inspiration.
Thank you, Carl. It’s nice to finally “meet” you!
I am amazed at the anger directed toward you, Jonathan from people who somewhat share your questioning view. Brian Carter was especially vulgar at RA facebook. You have made it clear that you have been vigilant and methodical about your health and have tried many different avenues and have not come to this decision lightly. Yet most people are not even being supportive. I just wish you the best in keeping up your positive attitude against the vicious onslaught of anger and negativity. Do not absorb the negative vibes but deflect it and keep a positive, happy attitude and surround yourself with people who are supportive. That will serve your health much better than any “advice” from your one time peers.
JTD
Todd: As you well know, there have always been factions within the AIDS dissidence movement. Some schisms have been kept under the radar for some time and issues like t-cell counts and the potential use of ARVs are among them. It looks like my decision is bringing some of these to light, though I too, am kinda’ amazed at the vehemence being displayed. I’m afraid I’m not doing a very good job of letting it roll off of my back.
Oh well, long before disinfectants and antibiotics, the best way to clear out nasty little bugs was fresh air and sunshine.
I don’t get it either. My experiences as an activist in the 1990’s made it abundantly clear that the ‘avoidance’ message of AIDS dissenters: ‘Avoid HIV tests; Avoid ARV’s; Avoid poppers etc’, was absurdly simplistic, and did nothing to help people who were both HIV positive and ill. I always felt that ARV’s were a tool, and it was up to each individual to decide how they best felt they should use them – or not – and that they should be able to do so in an environment of unconditional support and respect. This view is not shared by many dissidents, and I just don’t understand it.
I agree with JTD wholeheartedly.
What I don’t get is that both the Perth Group and Peter Duesberg have both repeatedly argued that there is a time and place for ARVs for certain people. Why is it such a shock that a “dissident” is taking ARVs for a short term health improvement?
S. Som,
The objection seems to be that I’m considering ARVs based on CD4 counts, rather than because I’m in the hospital, at death’s door, with pneumonia or KS. We’ve all seen how effective the ARVs can be for some people in such circumstances. What isn’t acknowledged as easily is that in nearly every such instance, such people also had very low levels of t-cells.
I have chosen to try to avoid such infections, as well as increase my CD4 counts. I am basing my decision, not only on a dramatic decline in my counts, but also on markers from organic acid tests and a history of infections.
It’s a Catch-22 for me. If I can reverse the decline in markers, but never get an AIDS-defining illness, the critics will suggest I was never at risk of an infection in the first place. The only way to please them is to do nothing and hope and pray I don’t get sick.
I don’t know if my choice is the “right” one or not, and it will prove nothing either way. It is simply my own informed gamble, based on the evidence I’ve seen. Or, as I prefer to call it: a crapshoot. 🙂
I have a story to share too. For the last year and a half I’ve dealt with one health challenge after another. I won’t be sharing details publicly—I’m not as comfortable as Jonathan is in that regard—but I will say that some of the conditions I’ve dealt with were quite serious. I tried everything I could and nothing helped; I continued to get worse. It eventually got to the point where the only option available to me was to take the conventional route. So, several months ago I made the choice that Jonathan is about to make and I began taking the meds. We can go ’round and ’round about the dangers and toxicities of ARVs—you won’t be telling me anything I don’t already know—but the bottom line for me is that the difference in my health in the last few months has been dramatic. Within only a few weeks I went from being very sick to feeling almost normal. I don’t know what the future holds, but this is where I am now.
Where does this leave me with respect to my questioning? I still have questions and probably always will. Nothing about my own experience convinces me that “HIV”, whatever you think it is, is the sole and sufficient cause of “AIDS” . Everything about my own experience confirms that being well-informed has been the best course of action. For example, I think my decision to forgo the drugs prescribed to me in 1996 was a good one. I was told at the time that I wouldn’t live to see the year 2000 if I didn’t follow doctor’s orders. Instead, I did my own homework, listened to my own body, and received 16 years of drug-free living. When I began to have health issues I did the same thing and I made my decisions accordingly. In neither case was it easy.At this point in my journey, I have problems with the mainstream AND the dissident points of view. I think the truth and the solutions are somewhere in the middle, and I wish there was a civil dialogue between the two sides. But I don’t expect that to happen any time soon, there are too many egos at stake. In the meantime, I’ll make the best use of the information available to me, taking all POVs into account. That is precisely what Jonathan is doing. And he has my respect for doing so. (For the record, in case anyone is wondering, Jonathan was completely unaware of my own decision until just a few days ago.)
Tony,
I know how hard it was for you to write that, and I’m sorry that you felt my decision required you to divulge such personal and private information.
It is becoming more and more obvious that what is generically called the “AIDS dissidence movement” needs to pay attention to what the outliers are trying to communicate.
I’ve told you privately, and I hope you don’t mind me sharing publicly: getting to know you and a handful of other people is the best thing AIDS dissidence has done for me.
Dear Tony,
You are, like Jonathan, a personification of bravery, integrity and intellectual honesty. Thank you for taking the time to share this very personal account with the community. My thoughts are with you and I am very happy to hear that you are feeling good.
I wouldn’t be myself If I didn’t take a stance–what I’ve been saying all along, that I think it’s awfully worrisome, that anyone should decide to take these specially designed anti-HIV meds. How many are there actually nowadays? For the dissident minded individual, how the hell do you know what your best strategy is if your belief is held in surrogate marker numbers counting? You can’t be embarking on anything more than one big assed experiment–a guess–a game of chance, Jonathan. How do you know? How do you wade through the myriad of pills, combos and cocktails? Who do you consult? “”Oh, I don’t know if this Susteva is working. Maybe I’ll try Truvada, no, maybe I should try Isentress, oh, no-wait, how about Fuzeon!””;
What if you get through the first round of side effects, your numbers are like, wow! Slap you on the back, back up, but you actually feel like f*^king shit? Are you going to keep going-going and going like the Energizer rabbit? I really, really hope not.
Brian,
Tony and I both know of several people who are taking ARVs with minimal, if any side effects. There is no question that the likelihood of such problems increase with the length of time one is taking them, as well as other variables. Some people are just going to have more tolerance. I doubt if I am one of them, so I don’t want or plan to take them any longer than need be.
Since announcing my intentions, I’ve also met more people who chose to not take the drugs and went on to develop KS or PCP, in particular. They are now taking ARVs, but are struggling. It’s much harder to regain one’s health after getting one of these conditions.
I strongly suspect that you, and some other outspoken dissidents just might be examples of testing poz, but for whatever reason, not being sick. At least for now. Of course, you don’t check any markers, so you can’t tell me that you’ve been living healthily for several years with fewer than 100 t cells, now can you? I would take that kind of information into consideration.
The reality is that long term declines and very low numbers of CD4 cells correlates very strongly with developing so-called opportunistic infections. The main message I take away from these apparently well-meaning, but rather shrill protestations is that you might change your mind if I was at death’s door, or developed KS, or some other exotic—and dangerous—infection. As you would say: WTF?!
If a new regimen and dosage of drugs makes me sick, I’ll probably quit them. The reality is I feel ilke shit now. You don’t. That makes it easy for you and others like you to second guess my own decision.
I am puzzled beyond words why this decision is being received so negatively by a few of you more zealous AIDS dissidents. You guys can’t even see that you are doing exactly what you accuse the AIDS orthodoxy of doing: practicing religion and basing your opinions on beliefs. Nothing more.
As long as we’ve known each other… as long as we’ve butted heads… I can’t believe you are reacting the way you are. I feel sorry for those of you who would rather die than “take the poison”, just to try to prove a point, especially when that outcome would be evidence to the contrary.
David Crowe has basically called me insane. You have accused me of being nuts and just another zombie. Yours is not a questioning mind; it’s a mind that is firmly made up, and unwilling to consider possibilities that don’t fit some worldview you have developed. It’s called dogma, and it is very much a religion.
As long you and others in the AIDS dissidence movement insist on imposing your own, very narrow, and frankly, unscientific litmus test on Affecteds with health problems, there will continue to be more martyrs for the dead denialists list than need be. I don’t plan to be one of them, no matter how much that distresses you.
BTW, yes, a phone call would have been nice. I returned yours, you know.
You said: “…so you can’t tell me that you’ve been living healthily for several years
with fewer than 100 t cells, now can you? I would take that kind of
information into consideration.”
Of course you would Jonathan, but unlike you, I take ZERO stock in anything designed for, by and around HIV theory and/or western medicine. Therefore my beliefs aren’t set up like you or others like you. I certainly don’t hold any key to longevity for myself or others, but there is more than enough evidence that supports never taking HIV chemo is to be in the category of Long Term Non-Progressor.
a) “Long Term Non-Progressor” is an orthodox AIDS construct, isn’t it?
b) LTNPs, by definition, do not experience a rapid decline, or extremely low CD4 counts.
“Long-term nonprogressors have viral loads under 50, do not take antiretrovirals, and have CD4+ counts within the normal range.” (from that other orthodox source, wikipedia)
Gotta’ love you. And I do. 🙂
Please understand something, Brian.
I’ve said before that I think it is quite likely that people like you may well be at no risk of illness, let alone “AIDS”. You seem healthy, anyway. You may be a living example of a “false positive” (whatever the heck that is).
You have no reason to take ARVs, and I would never suggest you should. Nor have i ever suggested that anyone else do so. Our circumstances are quite different, and you really aren’t in a position to advise me or anyone else about what I should or should not do. Just share your story and let people make their own informed decisions.
I support your decision to not test for the surrogate markers. Hell, it makes as much sense as testing. It’s the difference between following two different paths through the woods. There are differences, but they both lead somewhere unknown.
One difference is that you are not able to categorically state that your example is proof, or even evidence, that CD4 counts are meaningless, because you don’t “believe” in the tests, so you don’t have any record of what yours have been, or are.
Your answer for all of the rest of us is to attend a TCM practitioner, as if that is not “going to a doctor”. Do you think Chinese people don’t get sick? Why are Traditional Chinese Medicine researchers so quick to acknowledge the role of “HIV”, and refer often to “the virus”? 1, or “HIV infection” 2?.
I sincerely hope that you continue to live a vigorous and healthy life for many more decades. That does not change the reality that there are others who carry the Mark of Gallo who learned their counts had declined only after they were hospitalized with a hard-to-treat illness, like KS.
You “believe” you are healthy and free of risk, but you do not “know” what your future holds. Asserting that it is not possible for your current situation could change is, I’m afraid, denialism and dogmatism.
I still think we probably agree about more things than we disagree, and I’m troubled that my choice in this matter is causing such angst among some of the group of people I’ve adopted as my own.
Who said I was a good example of a healthy 50 something male? Please. I’m and ex-smoker of 30 years. I only pay attention to my diet half the time, stress from work, I frequent furniture manufacturing plants–all this I know are contributing to and manifest some quite clear characteristics of oxidative stress from time to time. The difference is I don’t run to or subscribe to doctors of western medicine. It’s deadly.
Forget about me not having a reason to take ARV’s. I have absolutely no reason to believe anything behind mainstream doctrine. Period. If I get sick I get sick–I’ll deal with it when and if the time comes. In the mean time It would be downright ludicrous for me to stir my left ankle in the cesspool stupidity of the AIDS mind-fuck, You know, like the stupidity of each and every F-ing thing about it, i.e., 97 T-cells. Holy Truvada, Batman! – Time to get some of that good old man made chemical down my throat…..
“I have absolutely no reason to believe anything behind mainstream doctrine. Period.”
Want me to show you the emails from Christine and Karri that said essentially the same thing?
Ever notice how many headstrong dissidents say, “I have no reason to believe this AIDS mind-fuck.” Then you present them with examples, and they proceed to repeat the mantra without answering those examples.
When Maggiore died, I seriously wobbled on this issue that I previously defended. I was seriously disheartened by the blatantly false cover-up by dissidents regarding the truth of her death, and the complete lack of scientific support for their claims.
Still, I remained med free despite having an enlarged parotid lymph node/cyst. But now it’s occurred again, and my numbers continue to fall. Brian and other sadomasochists among the dissident community would prefer that we martyr ourselves to the cause, when our deaths would do nothing but support the HIV orthodoxy.
I sincerely hope you don’t find yourself in a hospital with pneumonia or lymphoma or some other bizarre affliction, Brian. Trust me, it’s more of a mind-fuck than anything AIDS, Inc. is doling out.
Calling someone a sadomasochist is just that: name-calling. I’ve gotten to know Brian, and he is not an abusive person, and neither are any of the AIDS dissidents I know. We see things differently, and we really need to find ways to allow each other those differences.
What masked marauders like Raccoon like to do is put words in my mouth–to make up one’s own reality. It’s never bothers me, because it’s not a reflection of me, but a reflection of the other. Or in other words; what one wants to think or actually thinks of me, is none of my God damn business.
Now, as this draws down to an end and people look to find out more about your outcome, next chapter, I just want to wish you well and to please be cautious.
Here’s the part of the argument that, for me, isn’t intellectually satisfying. Jonathan makes a good point when he says, “…so you can’t tell me that you’ve been living healthily for several years with fewer than 100 T-cells, now can you?” And that’s a good question, because MANY high-profile HIV+ dissidents like Brian claim to be healthy without “Big Pharma” and “AIDS voodoo” and all of these other buzzwords. Well, they say they’re healthy until they suddenly develop pneumonia or thrush or CMV or lymphoma like some high-profile examples who are no longer around.
The problem inherent is that, since these dissidents failed to document their own health until it was far too late, we don’t have any SCIENTIFIC DATA about their conditions that could validate the HIV=AIDS (quotations omitted) hypothesis or refute it. Since I’ve discussed this with Brian, Christine Maggiore, Celia Farber, and Peter Duesberg in the past, I already know that they disagree with my assertion that, as disseminators of this information, they have a public responsibility for full disclosure.
Christine wrote a book that was widely read, made her a decent amount of money, and influenced many people to avoid the AIDS machine and quit their meds. Yet, as an HIV+ spokesperson, she had the ability and the responsibility to prove her views correct. As a white, heterosexual, non-drug-using vegetarian, Christine was the perfect candidate to support or refute all of the various theories about AIDS causality.
Stupidly, she did not take this precaution. She died without the kind of documentation Jonathan has bravely compiled. There is no autopsy. The same kind of irresponsibility is seen in the examples of many other dead dissidents, including Karri Stokely.
You don’t have to believe the CD4 tests to have them done. If you really don’t believe in them, then why are you afraid to have them done – they’re meaningless, right? If you happen to have a T-cell count of 50 and you live to be 80 years old, then we will all have a great, huge laugh at the expense of the AIDS industry and have it disproven altogether.
BUT THESE DISSIDENTS DON’T DO THIS. Instead, they draw the covers over their heads and deny the existence of the thief breaking into their house.
Christine didn’t die of depression. Stokely didn’t die from a moldy room. Over half of the people in Robin Scovill’s now-useless documentary are dead of pneumonia and lymphomas, not poor diet (as Christine once said to me) or secret use of poppers (as Duesberg once accused).
Simple blood tests, autopsies, and other diagnostics would help confirm the dissident position that there is nothing to worry about if it were, in fact, true. That dissidents REFUSE to take the scientific route to their conclusions while chastising people who turn away from dissidence reminds me of the Catholic Church imprisoning Galileo without looking at his irrefutable evidence that the Earth was not the center of the universe.
What I think is missed in this conversation is a simple fact. The vast majority of people who die every year from AIDS, about 18,000 to 20,000 people are on the drugs. So they are either dying from the side effects, or the drugs are not working to increase their cd4 to prevent illness. So drugs should never be your saviour, they arent. I think Jonathan has a balanced approach and a realistic one considering his past use of ARVs.
If they are used sparingly and not used long term, they can be of benefit. Not a cure all, but of some benefit. Jon, I just dont understand how these people could consider a cd4 count of 97 normal. This is biology 101.
Yes, I’ve seen friends die of causes that can only be attributed to ARV adverse effects. I also watched a poz friend die recently of liver failure, who refused to take the drugs. If only it were so simple as do or don’t take the drugs.
At what point one takes low CD4 counts seriously enough to resort to ARVs is truly a mystery as well, and I suspect it would vary from person to person. I don’t think 97 is a death knell, for example. I am also taking into consideration both the long-term and more recent sharp decline in both absolute numbers and percentage, as well as other markers and some crippling and inexplicable fatigue, a lymphatic cyst and some skin infections. It’s not any one thing, but a constellation of factors.
I could have waited until the numbers reached 50, or 5, but from what I’ve seen, there is some pretty good evidence that there is a point at which recovery of these immune cells is much more difficult, if not impossible. In all probability my numbers are lower today than they were more than two weeks ago, based on the trends.
I have no issue with someone thinking I’m “jumping the gun”. It’s a judgement call. What I strongly object to is the suggestion that I should not even consider this decision unless and until I develop a serious AIDS-defining disease. There is plenty of evidence for correlation between these markers and risk of infection to take them seriously.
Glutathione: The “mother” of all antioxidants…
http://www.youtube.com/watch?v=Eh2PYQBICWs
I supplement NAC, selenium and glutamine and my glutathione levels are within normal range, certainly not low.
Hi Jonathan:
I was doing some research on supposed science of how HIV depletes CD4 cells. If you are going on meds and the goal is to raise your CD4 count, here are some things to keep in mind, direct from the AIDS mainstream (as of 2010).
http://www.sciencedaily.com/releases/2010/11/101124124022.htm
“Drugs that blocked viral entry or that prevented reverse transcription
altogether stopped the CD4 T cell killing, they report. Those drugs that
act later in the (HIV) life cycle to prevent reverse transcription only after
it has already begun did not save the cells from their death.”
Thanks, DC… I’ll check it out.
JB,
I know we have had our differences, but I wish to express my sincere hope that the treatment regimen you are beginning will help restore your poor health. I am very relieved that you did not wait any longer than you already have. As you have aptly observed in others, treatment options diminish significantly if you were to wait until you developed an OI or other life threatening condition due to immune suppression. You are a smart, articulate and capable critical thinker, and I would much prefer to keep you around to argue with me.
I am also sorry that some of your fellows have turned their backs on you but since none of them are living life in your shoes, they have no say in the matter. You are indeed the expert on you, and no amount of rationalizing or speculating can take the place of that.
I am back in KC working an Internship over at GSK in KCK until my grad classes resume at the end of August. You ever want to get that beer, just let me know.
This might also interest you. An article about how to get the benefits of IV vitamin C without the hassle of the IV. Apparently it can be done orally. There are recommendations on what products to buy, plus articles on how to make it yourself if you want to do high-dose for a long time.
http://www.naturalnews.com/034646_vitamin_C_encapsulated_mega_dose.html
I haven’t read all comments in this thread, but as far as the dominating consensus seems to be – as inane as it seems to be to David Crowe – I venture to make a proposal myself regarding African immune deficiency, he may also regard as insane: implementing mass CD 4 testing of Africans troubled by persistent immunity problems with a view to prevent and remedy using ARVs.
Can you elaborate, Ricci?
Rancoon. Have we still not agreed that nobody has tested ”’positive”?
Do you mean we don’t know what “positive” means? Your comments are confusing.
JB,
I hope you do not mind me making a new comment thread as that 2 words per line business was getting a tad frustrating. I am curious about a couple of things that you might be able to clarify though:
If you think that modern HIV diagnostic testing is worthless, and that ARV therapy is a crapshoot, then why are you even concered with a high VL and low CD4 count? You seem to support selected research that shows a correlation between low CD4 and the onset of disease, and also acknowledge that ARV therapy has revived patients that are in circumstances similar to you, yet you still seem intent on sticking to your dissident guns that the testing and therapy is flawed. Seems awfully hypocritical to me, but you know what? I don’t really care about your reasons. I care about you getting the treatment you need to preserve your life, and I care about seeing some improvement in your lab work.
As to what I choose to study and do for a living, and your disdain for it? Again, a worthless conversation considering this is not about me, it is about you.
Take care JB.
Please consider that your last comment here, “Robby”, and allow me the right to have the last word on my own, personal blog.
First of all, I have never said that HIV diagnostic testing is worthless. That’s something some dissidents/denialists claim, and I don’t agree and have been ostracized by some of them for my points of view.
Most people put on ARVs today have neither a high viral load, nor a /very low/ CD4 count, which are my concerns for myself. “Low” by orthodox standards is <500. I'd be very happy with anything over 200 or so, and have lived well with CD4 counts below 500 for the better part of seven years. I have never made VL a big issue, either, if you've read my blog, other than note it /has /gone up. I don't know what it is, and if my CD4 wasn't crap, I'd take my chances with a VL of a million or so. The risk of toxicity and adverse effects from the drugs require a very high threshold to justify risking taking them for some perceived benefit. I consider a CD4 count of 70/7%, along with an increase in the rate of decline the last six months, to meet that threshold. Others clearly do not.
If you don't "get" where I'm at, there's not much more I can say to you, other than that you are in good company with several AIDS dissidents who don't get it, either. I am a hypocrite because I do not consider the hypothesis that HIV is the sole and sufficient pathogenic cause of
"AIDS" to be adequately proven to consider it fact? Or am I a hypocrite
because I contend that ARVs should be used as a /last /resort, not the
first, and certainly not prophylactically by healthy, negative gay men?
These views are aggressively promoted by the criminally profit-motivated
pharmaceutical industry, of which you are a part. This conversation
became about /you /the minute you acknowledged GSK as your employer and
stated that having that relationship has a censorious effect on your
ability to speak openly and forthrightly about the company's policy of
profiteering in an area of basic human need: medical care.
Please don't pretend you care about me. I've read what you've written
about AIDS questioners like myself: