I mentioned in my last post that I frequently get messages from people, asking about something I’ve shared, or sharing their own story. A few days ago, I received just such an email from a person I’ve never met, but who I’ve come to know fairly well online, and we continued the exchange through yesterday. Unlike so many people, this friend uses his real name, so it’s much easier to validate who I am dealing with and to trust his sincerity. With his permission, I have shared our conversation, verbatim, on the Forums at Questioning AIDS, and I am reposting it here.
The conversation was, and is raw and real. These are the kinds of real life stories we all need to be sharing and discussing more, imho. Joe is not his real name.
I also hope some of my friends who know me personally, will read this, and in the process, perhaps better understand my own struggle with questioning the “HIV=AIDS=Death, unless you take the drugs” paradigm, while not denying that some of us are at high risk of serious illness and cannot afford to be in a Zone of Denial either.
Subject: HIV and my dear friend
JOE: (2/11/13 11:15 AM)
We have barely corresponded, so it’s probably a bit inappropriate to be coming to you with this – but you are always so reasonable, and it seems your history might help put this in perspective.
I’ll try to keep it brief. A dear friend (and ex) tested HIV+ in 2008. I urged him to look closely at alternative ideas about HIV, and he did. And he basically, abandoned the entire concept – went on living his life.
Two weeks ago he got a cold. Then he got Whooping Cough. Then it went into pneumonia. And he is not getting well. The doctors immediately asked about HIV. He refused the test. They have kept him in the hospital where his response to treatment is slow. A new doctor was just assigned to him. This man has told him he’s exhibiting all the symptoms of PCP. They are doing a biopsy – and have basically told him without an HHIV test, they cannot prescribe ARV’s which could save his life.
I just got off the phone with him. He is a wreck and now totally freaking about his decision to “ignore” his HIV+ status. He doesn’t know what to do or to believe.
I told him that I have come to think that HIV+ may, indeed, be a marker of an immune system overload. And he does have a “fast track” history, which he gave up when he got his + diagnosis. I told him he may have done some damage that has lead to this, but that I did not know. And I told him not to let his dissident views get in the way of saving his life – if ARVs are the way to go.
I’m wondering if you have any thoughts / advice. And if this is all just too forward – or irritating….I understand. No need to respond. I’m simply worried about my friend, and I admit I feel a bit responsible for setting him on this path of questioning… which I still do! But I think there is some sort of truth in the middle.
Blah blah – sorry for my incoherence. Emotional morning.
I hope you are well, sir.
ME: (2/11/13 11:04 AM)
Please, never apologize for approaching me, or inquiring. I appreciate your confidence and trust, and I hold you in a similarly esteemed place, called “reasonable”! 🙂
There is, I am convinced, a “middle road” regarding HIV and AIDS and immune dysfunction in gay men. While I am mostly convinced that this illness is not likely to be caused a pathogenic retrovirus, capable of single-handedly destroying the immune system, I am far from convinced that HIV does not exist or is is “meaningless”. It is, in all likelihood, a marker. A messenger. And one worth acknowledging, at the very least.
Any questions about HIV, AIDS, or their relationship to each other is moot at this point for your friend. He is dealing with what sounds like a life-threatening respiratory disease. There is no question in my mind that ARVs are probably the quickest way of dealing with a case of pneumonia serious enough to require hospitalization. Is it possible that other treatments might work? Possibly. Does your friend want to risk the time to find out?
Look. Your friend apparently decided he needed medical help, or he would not have consented to admit to the hospital. That is a risky proposal for anyone to take, considering the track record of allopathic medicine, and one does need to weigh advice received and risks involved. The questioner in me can’t help but wonder what his “markers” might be. Would it not be interesting to know if he has next-to-no CD4 cells, and/or if his “viral load” marker is 7 or 8 digits? It would be even more interesting to discover if neither is the case. Again, I do not accept the orthodox explanation for these markers, any more than I reject them as meaningless. I just want to better understand how and when they do indeed correlate with serious illness.
You asked for my thoughts, and I don’t mind sharing them. The reality is that a dose of HAART for a few months, or even a year, is no more likely to cause irreparable harm to your friend’s liver or other organs than doing nothing (or eating garlic, or drinking colloidal silver, or infusing hydrogen peroxide). The evidence that HAART can knock that shit out fast is so strong that even the most die-hard dissidents will acknowledge ARVs as “last resort”. Those people who have said they would rather die than take ARVs, and found themselves in intensive care, are… well… dead. If your friend is not responding to other treatments, then this seems to be a good time to ponder the definition of “last resort”.
I do not envy you, but would urge you not to take too much upon yourself for another person’s choices or decisions. If your friend had accepted the mainstream point of view, and started his Atripla right away five years ago, he might not be in this situation. So what? What other situation might he be in? On a waiting list for a liver transplant? We do ourselves no favor by second-guessing and looking backwards for blame. Hindsight is helpful only for learning how we might be wiser and more informed in the future..
There is much, much more on my mind of course, but I’ll spare you my own rant. LOL. I would be very surprised if you expected to hear anything from me that is much different from what I’ve shared here. I hope your friend manages to find his way through this ordeal safely, whatever path he follows.
Do not hesitate to contact me anytime. I’m also available by phone or Skype.
JOE: (2/11/13 1:23 PM)
Thanks for taking the time to respond so thoroughly and thoughtfully. I am in full agreement with you, and I have basically said all these things to my friend. I think he will listen.
If I find out about any of his markers, I’ll let you know. His history reminds me a lot of the men in Cochrane’s “When AIDS Began.” – though not quite so extreme. But he has a history of drugs, STDs, lots of unprotected sex with radical anal play, douching, and the like. I am very fond of Tony Lance’s views on this.
Anyway, you’re the best. I was in need of a bit of validation/support today. And as you know – who the hell do you talk to about this? My partner is sympathetic, but we’re in quite a bubble with this issue.
ME: (2/13/13 5:21 AM)
How is your friend doing?
JOE: (2/13/13 9:28 AM)
I have had limited access to him, given the hospital situation. Last we left off:
-They told him if they did an HIV test, he would not need a lung biopsy, because if +, it was surely PCP.
-He then took the test, and prior to getting the results, they scheduled the biopsy anyway and basically admitted they tricked him into taking the test – for his own good. He was getting the hospital legal team involved – I’ve never heard him so angry.
-I never heard the results of his test (which I’m sure will be +) or his numbers. I should hear today.
-I do know he’s getting better – just slowly. They say the main marker that his has HIV is his consistent fever.
-And in a more stressful twist for him, his boyfriend tested positive, though they have had no unprotected sex and engaged in “low risk” behavior. I think the boyfriend feels he must have caught it, my friend is more concerned that the boyfriend took the test two weeks after a flu shot – and is on antibiotics for a sinus infection.
Bottom line: cluster fuck for all of them, poor guys…and so much confusion.
Thanks for checking in. How is your health? I know you went back on ARVs, right? You doing okay?
JOE: (2/13/13 12:11 PM)
Just talked to him.
He tested +, of course. They decided against the biopsy and are simply diagnosing him with PCP. They are running his numbers, which they anticipate are “horrendous”. I said he’d seroconverted in 2008 – it was actually late 2009, which would mean his system collapsed in 3 years and 3 months – this is also confusing to him, given the 10-15 year time frame often stated. His boyfriend was negative prior to dating him and so the narrative is now that it spread from one to the other, even though the boyfriend was never exposed to ejaculate.
All he is doing now is trying to get well. He said he will likely take ARVs for a year and then see how he’s feeling and do drug holidays…maybe go off of them entirely.
I feel for them all. And it all just adds to my confusion over this syndrome. I have no idea what to believe or think.
ME: (2/13/13 10:19 AM)
You are in very good company. Please do keep me informed.
FWIW, everything you have reported support any number of theories or postulations, including the orthodox one. How can your friend know he was exposed/seroconverted in 2008? Did he test negative prior to that? The claims about timeframe have always been vague. Few people are completely honest about their sexual activity (including me, and I’m pretty honest!)
All that matters, in the end, is that he gets better. If we insist on understanding all of the mysteries of life, and all of the things that make no sense (drones, anyone?), then… well, it’s too depressing to ponder for long.
Thanks for the update, and feel free to visit anytime.
JOE: (2/13/13 12:38 PM)
Yes – it does support many a theory. It’s amazing how the lens through which people look will determine how they observe a situation such as this. As I have no lens, it’s just one big ball of confusion. And I remain so very perplexed by a few things in terms of HIV.
1. If between 20% and 30% of HIV + people have no idea they are positive (which has been a consistent statistic for nearly 25 years) – where are the hospitals being flooded with PCP, KS, and the other original defining illnesses?
2. How does HIV jump magically from gay men to black women and skip everyone else? (And the Down Low theory has been thoroughly debunked by the annals of epidemiology… as if black men are the only men to hide homosexual behavior – please)
3. However, why is it that so many people with immunity issues do test positive – and what about HIV negative AIDS?
Anyway…I’m preaching to the choir, I know.
To answer your question…. he was testing consistently and so has a very good idea of when he seroconverted. And it was in November of 2009. I think his previous test was in September of that year. His boyfriend was also testing consistently – has no unusual background of drugs, diseases, and the only sexual partner he’s had in the interim is my friend.
Anyway – thanks for being a sounding board.
And now I must go back to my actual life – [personally identifying information deleted]
JOE: (Valentine’s Day 2/14/13 8:49 AM)
You were curious about his numbers.
CD4 = 24
VL = 3,000,000
He was told they could fairly quickly get his VL to undetectable.
ME: (2/14/13 2:21 PM)
I’m shocked at those numbers. (not)
This is another example of why I’ve become fed up with the very vocal, denialist dogmatic branch of the dissident community. To continue to say that CD4 counts are meaningless is insane. They are flaky and unreliable and suspect, but they are not meaningless, especially when observed over a long period of time. The viral load is obviously correlating in this case, as well. None of this… I repeat: none of this is proof of the existence of an exogenous, pathogenic virus as the sole and sufficient case of AIDS by a long shot. These markers, however, can be a pretty fucking strong case for an immune system that is no longer able to fight off a pathogen that almost everyone else deals with on a daily basis. We’ve known this since the early 1980s, before Gallo’s test or AZT!
Yes. Reducing viral load is what these drugs are designed to do and tested for. The only drug that will ever be approved is one that cuts viral load to undetectable as long as possible. That doesn’t mean they are the only solution, or even the best one. They are what we know works quickly at this point in time, and I’m unaware of any other treatment that can make that claim, including high-dose intravenous vitamin C; ultraviolet blood irradiation; or whole body hyperthermia.
Felix de Fries has compiled some very interesting information about “AIDS” and these markers. He is a gay man from Zurich, about my age, with a history of gay activism. We have been corresponding a lot lately. If I’ve sent this to you before, forgive me, but Felix was on a recent How Positive Are You podcast. I have to hold my nose during the segments when David Crowe is rephrasing “poor Felix’s” information, to assure the rest of us that he complies with David/RA’s PC thinking, and I lost count of how many times Elizabeth Ely felt compelled to explain to the listeners about “gay men”, but I highly recommend the links at the bottom of that page, as well as Felix’s commentary.
Your friend fits a classic case of multiple exposures to infections and treatments with antibiotics. Probably multiple drug resistance going on, and certainly mitochondrial damage. ARVs will knock out antibiotic-resistant infections, but in the process, accelerate/exacerbate the process of even greater resistance and mitochondrial damage.
I’ve yet to hear a good explanation for how/why ARVs reduce “cellular debris”, which is the most common dissident explanation for “viral load”. We’re told that these drugs are cytotoxic. Chain terminators and/or mitochondria destroyers. So… wouldn’t killing cells and mitochondria result in increased cellular debris, not reduction?
It’s mad crazy.
I’m currently in a motel room in Wichita, almost 4 hours from home in Kansas City. I just had a huge panel of labs ordered at the orthomolecular clinic I attend. I go back in the morning to get 75 grams (yes, GRAMS) of ascorbic acid shoved into my veins in one hour! After 9 months of low-dose ARV monotherapy, I’ve pretty much stopped all of the other alternative treatments, though I was doing MAF314 for about 6 or 7 of those months. I’m hoping to stop the ARVs again, but I want to gather baseline information before I restart an alternative protocol that Felix claims is working in Germany, call Cell Sybiosis Therapy, based on work by Dr. Heinrich Krame, who I’ve read and think makes a lot of sense.
I’ve been accused of “fixating” on CD4 and viral load, and that’s so far from the case! The tests ordered today involve my blood, lymph fluid, urine and poop! LOL. Most are repeats of tests done 1-2 years ago, for comparison. The total cost exceeds $2,000, of which Medicare will pay about half, maybe a bit more. Once home, I’ll have my family doctor order the “regular” tests and HIV numbers, which don’t cost me a dime.
Sorry I got onto a soapbox for a bit there. You have your own plate full. If you haven’t already, subscribe to my blog for email updates. I don’t write too often, but hope to start posting at least once a week or so about what I’m doing, as well as some essays on my experience with the dissident community.