(Note: A supplemental autopsy, dated February 11, has been released. Read more here.)
Before opening this particular can of worms, I want to extend my deep appreciation for and condolences to Gos Blank’s wife, Lisa Dugger. No one has been more deeply [glossary_exclude]affected[/glossary_exclude] by his passing, except perhaps his daughter, Libra. Few people I know would be strong enough to comply with Gos’ wishes that his life and his death be an open book. His family and doctors also knew Gos as Charles David Rich, the name his parents gave him.
Gos, who passed away on October 13, 2013, rejected the orthodox view that HIV is the sole and sufficient cause of AIDS, Indeed, he seriously doubted that HIV even exists. Those unfamiliar with AIDS skepticism might find that hard to imagine, but it’s not as crazy a belief as it might first sound. It does require one to have an open mind and be willing to spend considerable time reading and researching the history of HIV and AIDS that isn’t usually presented in the mainstream media or even the medical journals very often. I have written about Gos before here.
I also helped Lisa raise funds to pay for the autopsy that Gos wanted performed, especially if his cause of death was going to be blamed on HIV or AIDS. Thanks to generous donations from his friends, that independent autopsy was performed, the final report has been completed, and it is available here. The only mention of HIV is in the section detailing Gos’ known medical history.
Please bear with me. This is not easy to write about, and if you think I am expending a lot of words trying to make sense of what I’ve learned about Gos, then you haven’t read much of Gos’ writings, have you? Compared to that man’s verbose writing my posts look like tweets.
This is going to be a long slog, so go fetch yourself a cup of tea or coffee, or a beer if you prefer, and settle in. There were more than 500 pages in Gos’ medical records from the hospital to review and his autobiographical book, which has not yet been published, is more than 90,000 words long. I have relied on both to help me write this, and unless otherwise noted, all text in blockquotes are from Gos’ book.
Getting to know Gos
There is more than one reason Gos and I hit it off so well. We had a lot in common, including a shared deep respect for each other’s points of view and opinions, especially those we disagreed about.
We both received our positive HIV-antibody test result within weeks of each other; me in late December 1998, Gos in January 1999. We both had a history of viral and other infections prior to being diagnosed “poz”. Gos had a history of fungal infections going back to the day he was born. He also had Crohn’s disease, allergies and gawd only knows what else. During my own childhood and teen years I had been through bouts of viral illness including mononucleosis (probably caused by EVB, but possibly CMV) and Hepatitis A, as well as undiagnosed intestinal distress. One year in junior high school I missed more days than I attended, and though I can’t say that all of those absences were because I was truly sick, many of them were.
Point being, Gos and I both had a history of multiple infections and illnesses long before we ever tested positive for HIV.
Both of us also started taking ARVs shortly after our diagnoses, and we both quit them pretty quickly thereafter. We shared similar histories of sexual promiscuity with other men, though Gos was more bi that I have ever been. I met Gos on the QA Forums, and we became friends pretty quickly. We spent hours on the phone with each other talking about our personal experiences, and discussing what we saw happening in both the AIDS mainstream as well as the AIDS dissident community.
We agreed more than we disagreed, but we did disagree on some key points. One of those was the significance of CD4 counts. I considered a persistent, long-term decline to extremely low counts—defined as single- or low double-digit numbers—to be a serious warning sign. Gos thought, for the most part, that t-cell markers were so poorly understood as to be meaningless.
Another question we disagreed about was whether there is ever a point at which one should consider resorting to ARVs. Obviously, I had come to the conclusion that there was a time and place for ARVs myself, while Gos was quite adamant that he would never take them again, unless he discovered some compelling evidence he had not yet seen.
What set Gos apart is that he was not a dogmatic AIDS dissident. He always left open the possibility that what he believed about HIV and AIDS and the ARVs might be wrong. For example, when I announced that I had made the controversial (for some dissidents) decision to resume a reduced dose version of ARV monotherapy in the QA Forums, Gos wrote:
I don’t agree that Jon’s falling CD4 counts are necessarily a consequence of anything but a combination of getting older and having had a somewhat checkered health history even prior to seroconversion. And I fail to see how taking drugs that will temporarily cause his immune system to “burn brighter” will prolong the time before it eventually “burns out” and leaves him defenseless (and sooner or later it will in any human being once they reach a certain age.)
But just because I don’t agree with Jon about the need to take ARVs to artificially stimulate CD4 activation doesn’t mean that I don’t hope I’m wrong about what ARVs will ultimately do to his immune system thereby.
Jon, you know I’m critical of your decision, but you also know that I am supportive of your decision even if I don’t agree with it. And for what it’s worth, I honestly hope you benefit, and the only “betrayal” I fear from you is that you might leave us to face the monumental task of filling your shoes.
The most important thing that Gos and I shared, and one of the reasons we stayed so connected was this commitment to always be willing to question what we thought we knew.
Gos’ latest and final hospitalization did not just happen out of the blue. In his personal medical updates he reports that 2011 was “an exceptionally good year for me heatlhwise.” Starting in 2012 however, he catalogs an almost monthly litany of various troubling symptoms, starting with a variety of staph infections. A furuncle on his left calf in January; followed in February by staph infections in his right ear, left eye and right forearm; on his nose in March. In April it is what Gos called “shoe allergies”, blisters along the sides, tops and occasionally the soles of both feet. May brought a butterfly shaped rash on his face, not unlike the one his older sister also gets. In her case it is called lupus. By summer Gos was reporting “non-herpetic cold sores” on his mouth; a painful sore on his penis; and an infected lymph node in his groin.
Determining that the infection was system, Gos began taking an antibiotic treatment that included clyndamycin and Bactrim, which resulted in severe diarrhea, which he attributed to a flare-up of his Crohn’s disease. He was taking prednisone. Then thrush developed, which he treated with nystatin.
Later that year Gos also reported having “another large hole in my body, this one about the size of the end of a fat Sharpie, located next to my anus, amid a cluster of smaller, similar lesions” that had been there about as long as the sore on his penis.
It was about this time that Gos learned that his younger sister, who also had unexplained infections and skin sores, had been diagnosed with Chronic Granulomatous Disorder (CGD). I’ll come back to that later.
In June 2013 Gos admitted himself to Memorial Hermann Medical Center in the Woodlands with pneumonia. He posted a detailed description of that encounter on the QA Forums. In short, he experienced some relief from treatment with steroids and antibiotics, but released himself against medical advise after an infectious disease doctor became involved and tried to insist that Gos needed treatment for presumptive PCP, a fungal infection, based solely on a positive HIV antibody test. A test that Gos did not request and did not want performed. That hospital encounter becomes part of the story that plays out during Gos’ final hospitalization four months later.
The autopsy results
Let’s get Gos’ autopsy report out of the way, because the findings are crucial to understanding what was happening to Gos the last few months of his life.
Based on the anatomical findings at the autopsy, reasonable medical probability,
and investigational information available at this time, it is my opinion the decedent,
CHARLES DAVID RICH, died as a result of multiple pulmonary conditions including
CMV bronchopneumonia, centrilobular emphysema, and diffuse alveolar damage
(Adult Respiratory Distress Syndrome). His death was further complicated by CMV
The biggest surprise from the autopsy was the determination that CMV (cytomegalovirus) was the primary contributor to cause of death. There is no mention of CMV prior to Gos’ admission to Cypress Fairbanks Medical Center, the hospital he went to in October 2013, in any of his medical records that I’ve been able to review. The first mention of CMV is the positive PCR test result, drawn October 8 and not reported until October 12, 2013—the day before Gos died.
The hospital records are confusing. In his progress notes of October 12 the attending doctor, Rajendra G Pandya, MD wrote (all bolded emphases are mine):
ASSESSMENT AND PLAN:
1. Patient with acquired immune deficiency syndrome with [glossary_exclude]low CD4[/glossary_exclude] count, now with Cytomegalovirus viremia, possible Cytomegalovirus pneumonia remained [sic] unlikely.
Almost to the end, the doctors at Cy-Fair mistakenly believed that Gos’ terminal path was caused by pneumocystis jiroveci, a fungus, and multiple bacterial infections. At no time prior to the day before Gos died did they suspect, let alone treat a viral cause.
Cy-Fair Medical Center and the treatment plan
Cypress Fairbanks Medical Center is a mid-sized regional hospital in northwest Houston. It appears to rank “fair-to-middlin’”, as far as hospitals in the Houston area go. “Cypress Fairbanks Medical Center is not as highly ranked as many other hospitals because it does not have any nationally ranked specialties,” according to Find the Best, a website that compiles information from a variety of sources. One of the reasons Gos chose to go to Cy-Fair when intestinal pain and breathing difficulty became too severe for him to bear is because he did not trust the doctors at Woodlands Memorial Hospital, where he had been treated for his last bout of pneumonia in June. He checked himself out when they pressured him to take ARVs.
Gos was intent on finding medical care some place that would be least likely to suspect he might be HIV-positive. He was adamant that he be treated for his primary presenting illness without any presumption of a positive HIV-status. “He wants us to think ‘he is hiv-negative’”, a doctor scribbled on one of his hospital chart notes at Cy-Fair after learning of Gos’ status several days after his hospital admission.
While Affecteds often protest—justifiably—that most doctors tend to blame HIV for everything and consequently too often fail to accurately diagnose underlying conditions, it is also true that doctors are trained to include and consider their patients’ medical history as part of their evaluation for any current presentation of symptoms. This conundrum plays out over and over during Gos’ 11-day hospitalization at Cy-Fair.
Gos was admitted there on October 2, presenting with abdominal pain, diarrhea and a history of Crohn disease. The admitting physician also noted “new-onset pulmonary fibrosis”, but that condition was not new. Gos was treated for it at least four months earlier, but the Cy-Fair doctors did not know that yet. The breathing problem was a mystery at that point, and the admission note even remarked that “Interestingly, pulmonary fibrosis could also be an extended spectrum of inflammatory bowel disease.”
Breathing treatments with the bronchodilators Albuterol and Atrovent were started and Gos was administered a cocktail of drugs, that ultimately included steroids, antibiotics, antifungals and eventually, anti-anxiety meds, sedatives and other psychotropics. On October 4, the antibiotic Merrem was added. On the 6th, morphine was added to the drip and on the 7th, the antipsychotic drug Haldol was injected and Antivan—a benzodiazepine prescribed for anxiety and panic attacks—was given to Gos. By the 8th, more antibiotics were being included in the mix, including vancomycin, Cipro and Sulfamethoxazole/Trimethoprim.
The probable diagnoses being considered initially included interstititial lung disease (ILD), congestive heart failure (CHF), and less likely, pulmonary Langerhans cell histiocytosis and lymphangioleiomyomatosis. Cy-Fair doctors were so uncertain that they even suggested (in the records, if not to Gos or the family) that a video-directed surgical biopsy (VATS) be performed and a tissue sample be sent to the Mayo Clinic in Arizona.
In other words, they were throwing almost everything in the hospital pharmacy at Gos, except for drugs that might have treated the infection that apparently killed him: a virus.
In their defense, the doctors at Cy-Fair practically begged Gos to allow them to transfer him to another hospital as early as October 6.
He needs a higher level of care and a close monitoring. There is a potential for worsening and he may eventually need intubation. I want to transfer him to higher level of care. I discussed with other attendings as well as primary care, they are all agreed. I tried to contact Methodist Hospital, but they refused. It was refused because his insurance not on the network so as St. Luke’s Hospital at downtown. We managed to get hold off Memorial Hermann Hospital. I discussed it with the attending on-call, Dr. Doshi. I explained the situation. He kindly accepted to transfer the patient to Memorial Hermann Hospital for further care and he agreed. He needs higher level of management. He suggested HIV test as well as start him on treatment for PCP prophylaxis. I thought about PCP, but he was not taking long-term steroids. He started taking prednisone 2-3 days prior to this admission. He has no history of HIV.
Based on what I’ve read in the hospital records, once the doctors at Cy-Fair realized that Gos was not going to give his consent to being moved to another hospital, they hunkered down and did the best they could, considering their own admitted limitations and inexperience, as well as the restraints they felt Gos had placed upon them.
Lisa, who found herself responsible for all medical decisions after Gos was sedated, was very much aware of Gos’ aversion to nearly all drugs, and knew that he was loathe to take anything “presumptively”.
The Gos strategy
One of the most prominent memes in the AIDS dissident community is to treat any presenting illness just as one would if they were not labeled “HIV-positive”. For many this policy is amended to include: avoid antiretroviral drugs at all cost. Gos not only subscribed to this philosophy, he had honed it and hammered it home in his writings. In the opening chapter of his yet-to-be-published book, Living Proof Vol I – Confessions of an AIDS Survivor, Gos writes:
The “cure” for AIDS is simply this: Pretend that you don’t have HIV. Live, in fact, as though this shape-shifting, hyper-intelligent, time-traveling, teleporting virus simply does not exist. DO NOT let your doctor blame HIV for ANY of your health complaints, and whatever you do, DO NOT let him ignore any health complaint, simply because he cannot blame it on HIV. If you test positive on HIV tests, chances are there’s a reason for it, and that reason is NOT because you harbor this mythical virus in your blood. Chances are, the reason you test positive is that you have real health issues, completely unrelated to HIV, which threaten your health and your life, and if you make an effort to address your health issues, you have a good chance of improving your health and saving your life. Contrariwise, if you choose to allow your doctors to relegate you to the status of “AIDS patient”, then do me a favor: When you see the Grim Reaper, tell him I said “Hi”, and tell him for me that I’ll be along when I’m goddamn good and ready.
While non-disclosure might be considered a reasonable position to hold when one is healthy, or perhaps even only moderately ill; it may have proven to be the downfall of the man who found himself unable to breath, in a hospital intensive care unit, and ultimately intubated, sedated, unable to communicate and no longer able to make decisions for himself.
Withholding information from doctors when one is in critical condition is not only risky, it sets up an adversarial environment. One may as well consider staying at home. While the goal of convincing doctors to stop blaming HIV for everything is an admirable one, until that seemingly impossible task is accomplished, once one finds themself staring at the walls of an ICU unit, other strategies ought to be considered.
Once the medical system has documented a patient’s HIV-status, doctors and hospitals elsewhere are likely to find out, HIPPA be damned. That is only going to become more true in the future. Gos knew this.
But realistically, how much longer do you think I’ll be able to get away with it, with more and more of our medical records being digitized and posted on digital networks? Sooner or later the day will come when it won’t matter whether I tell my doctor that I’m HIV-positive, because with a few mouse clicks, he’ll know. What then?
Gos knew that the polyreactive HIV antibody test is not meaningless. In his case getting appropriate care would require doctors to do some searching for the underlying immediate cause—CMV—but their training did not suggest they even consider such a diagnosis unless the patient had just had an organ transplant or was otherwise immune depressed (ala HIV-positive), which Gos tried to hide from them. His strategy proved to be a two-edged sword and it came back and hit him. Hard.
Heck, he wrote about this too, when he described conversations he had with another AIDS dissident friend, Kelly Landis. Landis, who died in 2007, was an AIDS dissident who also insisted the HIV test was meaningless, a common enough belief in some quarters of AIDS rethinkers.
As the argument would heat up, his voice over the phone would begin to rise in pitch and volume, “So how do you tell when it’s a wake-up call and when it’s a crank call, HUH?!?” I always answered by saying, “Well, Kelly, maybe for some people it’s a crank call – and maybe you’re one of those people, I don’t know. I know that for me it was a wake-up call, and to answer your question, I think that if you test poz and you look at your life and your health and you really don’t see any health threats or issues that you need to address, then maybe it’s a crank call. On the other hand, if you’re someone like me who had a lot of health challenges that need to be addressed, then maybe it’s a wake-up call.”
If I were able to speak to Kelly today, I’d change my answer to, “Well, dude, if you find yourself dropping dead of a disease that you swore didn’t exist, then maybe it was a wake-up call after all.”
A spiraling decline
As part of the routine hospital admission, Gos was offered (recommended? urged?) an HIV test, which he refused. The hospital ran sputum and blood tests which detected multiple fungal infections, including candida and pseudonomas bacteria.
Despite the broadside of drugs being given—with Gos’ knowledge and consent, as he had not yet been intubated and sedated—on the morning of October 5, Gos “suddenly desaturated” following abdominal cramps. In other words, he was not getting enough oxygen via the cannula in his nose. The change was so sudden that doctors ordered a CT to check for a pulmonary embolism, which proved to be a negative, and Gos was put on an oxygen non-rebreather, or full mask, and was advised for the first time that he may require intubation. Doctors suspected aspiration, but Gos insisted he had not vomited.
On Thursday evening, a PICC line was inserted, allowing long-term intravenous access, as nurses were having trouble hitting Gos’ veins for blood draws and IV injections.
The doctors were still reporting Gos’ breathing difficulties as diffuse interstitial lung disease on his chart October 6, and again urged him to get a higher level of care than they were able to provide.
Gos frequently mentioned his struggle with Crohn’s disease in his writings as well as phone visits we had, and that illness is duly noted in his medical records. In his book, Gos writes that in 2011 “my Crohn’s disease almost seemed cured.” When the diarrhea and intestinal cramps returned in 2013, he blamed it on a Crohn’s flare during one of our phone conversatons, but based on CT scans at the hospital, doctors reported that there were “minimal” signs of Crohn’s, and there was no further mention of it in the autopsy report. What the scans failed to detect was the CMV colitis that was discovered during the autopsy.
The combination of undiagnosed conditions, as well as the cumulative adverse effects of a cocktail of powerful and toxic drugs surely contributed to the declining spiral that Gos found himself in, though he was so heavily sedated after the intubation that only his loved ones were aware of it.
HIV status outed
While trying to find another hospital to provide the higher level of care he needed, doctors at Cy-Fair discovered Gos’ secret: he was HIV-positive, or as Gos would say, false-positive. The first hint is a hand written note by Dr. Chelikan on October 6. “After conversation with critical care specialist at Memorial Hermann, ordered Bactrim and HIV test.”
His status was also documented in the medical records received on or about October 7 from Woodlands Memorial, the hospital Gos walked away from in June. Gos refused both the recommended Bactrim and the HIV test. The doctors at Cy-Fair were in a spot. They knew something they were not supposed to know.
Just as Gos predicted, everything changed. Now the doctors were sure they knew what was wrong with his lungs: PCP, or pneumocystis jirovici pneumonia. What else could it be? Everyone knows that when a poz person gets pneumonia, it must be PCP, even when it isn’t, as the case ultimately proved to be with Gos. Among the notes made October 7 was this: “Acute Respiratory Failure – now noted as ‘likely PCP… now known HIV status.’”
Gos continued to stall for time, unaware of how little time he had left. He admitted to doctors at Cy-Fair that he was HIV+ (though knowing Gos, I’m also sure he told them that the result was a false positive, caused by his other health problems). He also refused to take Bactrim, the standard of care for PCP, and in the end, that may not have been such a bad judgment call, as there is no indication from any tests or the autopsy that Gos ever had PCP, and he was practically overdosed on drugs as it was.
The news about Gos’ HIV status generated a lot of discussion between doctors, Gos, Lisa and other family members. When asked whether he had a DNR (do not resuscitate) order, he informed them that he would like to be resuscitated but ‘refuses endotracheal intubation’ (underlined in hand-written note in records).
The patient must be crazy
Team Cy-Fair was getting exasperated and feeling hamstrung by Gos’ well-informed refusal to follow a medical treatment path that was based solely on the guidelines of the allopathic care model developed for people with “HIV/AIDS”.
The next day, a doctor recommended in his notes that a psychiatric consult be ordered to evaluate this patient for “refusing care”. On October 12, Dr. Dileep K Puppala, MD noted in the hospital records: “Patient’s family had unreasonable expectations and interfering actively in the treatment of the patient.”
If a psych evaluation was ever performed it is not noted in his medical records. For the record, Lisa and the rest of Gos’ family were united in their efforts to respect Gos’ wishes and to protect his rights as a patient.
I don’t remember the exact date that Lisa first called me, at Gos’ request, but it was just a few days before the intubation was performed late at night October 7. By then Gos was worn down from lack of oxygen, as well as the growing tension with the doctors he needed. It was not possible to speak with him by phone, though Lisa did manage to convey messages.
What the doctors apparently failed to inform Gos and family about intubation is that the tube is such an uncomfortable device that placement almost always results in the need to heavily sedate the patient to prevent them from fighting it. That was certainly the case with Gos. Once the tube was in, he was sedated to the point of unconsciousness and was never again able to communicate his wishes. The doctors at Cy-Fair had succeeded at doing something no other human being had been able to do: shut Gos Blank up.
It was, in hindsight, also the day Gos sealed his fate. Though he cannot be blamed for seeking relief from the sensation of being suffocated, I wonder if he would do it again, considering the burden it placed on Lisa’s shoulders. It was now up to her to act in Gos’ behalf, and she took that role seriously. The doctors’ attempts at persuasion now turned to frustration as they tried unsuccessfully to convince Lisa to let them “treat the HIV with antiretroviral drugs”.
Wife reported that if the patient would pull through by any chance and would know that human immunodeficiency virus treatment was started. He will divorce her because that is not what his wishes are.
– Dr. Rajendra G. Pandya, MD
Progress Notes 10/12/2013
Final efforts—too little, too late
More test results were coming in while Gos was unconscious. Most notable was the one reported October 8, the day after Gos was intubated: “No pneumocystis is present.”
Other tests were being ordered that same day, despite specifically being refused by the patient. I doubt that even Lisa is aware that Cy-Fair performed a so-called “Rapid HIV 1/2” test that day; result: POSITIVE. The test was collected at 10:40, the same time that blood was drawn for a confirmatory Western Blot test. Six of seven bands on the WB showed “present”. From what I recall from Gos, his previous WB, performed more than a decade earlier, “lit up all seven bands like a Christmas Tree.”
So now Cy-Fair knew… what? That Gos and the other hospital were not lying to them? That he really does light up the HIV antibody test? The same test that LabCorp has announced it is discontinuing?
Finally—and this is significant—Gos’ care team finally ordered a test for CMV, though they didn’t get the positive test results back until the day before Gos passed. Although it is speculation on my part, I’m willing to bet that any major medical center would have ordered that test within hours of Gos’ admission, had they known he was HIV-positive, and hopefully gotten the results in a day or two.
The missed diagnosis: CMV
Despite everything the doctors tried at Cy-Fair, they did not even consider testing for CMV until after they learned of Gos’ positive HIV status. This is an important piece information that needs to be considered by those of us who question the orthodox AIDS paradigm. This is the kind of challenge to my thinking that would probably prompt me to call Gos to discuss, because the strength in his logic was his refusal to be dogmatic or an absolutist. He held strong opinions, yet he freely admitted that he had changed his mind before and he was willing to change it again, if he was convinced that there was sufficient evidence to do so.
CMV was one of the original “AIDS-defining” opportunistic infections, right up there with PCP and Kaposi’s Sarcoma. CMV is ubiquitous, which means most of us would test positive to antibodies for CMV because we have encountered it. It does not usually cause serious illness, let along death. There is an exception to that assertion, and that is: unless one is immune compromised. There are treatments available that can usually suppress CMV.
I can’t help but travel a ways down the path of “what if”?
What if Gos had gone to a major medical center that had more experience treating respiratory illnesses in patients who also tested “HIV-positive”?
What if Gos had resigned himself to remaining at Woodlands Memorial last June when he was being treated for what he later referred to as “allergic pneumonia”? Could he have found some way to navigate among or around their “AIDSthink” long enough for someone to have wondered if he should be tested for CMV and treated if that test was positive?
What if—since he was already being bombarded with cocktails of antibiotics, antifungals and more at Cy-Fair—Gos had accepted a course of antiviral treatment, or even antiretroviral drugs? Would three months of Atripla have killed him any more quickly than the CMV did?
Now, there are some problems with these “what ifs”, and I know it. Gos had a lot of shit going wrong with him at the same time. Multiple infections, and possibly genetic and autoimmune disorders that complicate the picture. Still, the autopsy determined that the CMV was the final straw. Gos wanted the autopsy performed and publicized so the rest of us could learn something, so I’m trying to honor his wish by paying attention and trying to see what might be learned.
There is no way of knowing if ARVs would have been effective against the CMV, but there is certainly some pretty strong anecdotal evidence that they probably would have been if it wasn’t too late, and there are certainly other “non-HIV” antiviral treatments that have been shown to be effective, and are probably no more toxic than the cocktail of drugs Gos had already been subjected to. CMV pneumonitis does not have to be lethal.
I’m just having a hard time understanding how a considered decision to include antiviral drugs, or even ARVs for a limited period of time as part of a broad-based attempt to control an eminent life-threatening unidentified infection can be so bad, whether one actually has “HIV” or not.
Gos anticipated that he would probably die before his time, and that no matter what the cause, it would be blamed on HIV.
That’s just the way it is when you’re HIV-positive, and what’s really fucked up about it is that if I were to get sick and die tomorrow from any of the autoimmune conditions that my doctors have consistently ignored in favor of chasing a nonexistent retrovirus, my death would be blamed on this nonexistent retrovirus by the very doctors who’d allowed the disease to progress so far without appropriate treatment.
But according to the independent autopsy that Gos requested be done, the primary immediate cause of his death was not an autoimmune disorder. It was an out-of-control infection by a ubiquitous virus that most of us carry. Such infections by CMV are found only in severely immune compromised patients, like organ transplant recipients and… dare I say it… people with “AIDS”, or “AIDS-like” conditions of immune system failure.
Despite the many problems with the HIV=AIDS theory, and the current wrong-headed approach of treating healthy people with ARVs, I’m quite willing to swallow my objection to the damned drugs in the event of acute crises if only it meant I could be calling Gos tonight, instead of writing about his last days on this earth.
Those pesky CD4 counts
As I mentioned earlier, Gos and I disagreed about the significance of declining CD4 counts, and I agree that Gos’ story was a fairly unique one. Gos had inordinately high CD4 counts for years. When he tested positive, his count was 1400, and went as high as 1700 while he was on ARVs. He argued that his counts defied the conventional medical wisdom, because he felt sickest when those markers were so high, and better when they dropped. Gos’ lower counts would still be considered quite high for the average healthy person. In his book, he writes that his CD4 count never dropped below 900.
If we take the broader 400-1,200 range as normal range for humans, then my highest count, when I was at my sickest, was nearly 50% higher than the highest normal count. (If we use the more narrow range, then my CD4 count appears at least 70% higher than normal.) At my lowest count, I was in the upper ranges of the normal spectrum. Whether by consequence or coincidence, when my CD4 count was furthest outside the normal range, I was deathly ill, and as my health rebounded, my CD4 count rebounded lower, towards a more normal range, seemingly synchronous with the improvement in my health.
A few days before he died, Gos’ CD4 count was only 5 (4.5%), and all of his other t-lymphocyte counts were extremely low as well. His CD3 count, which normally range about 600-2400 was only 79 and his CD8 was 73 (reference range: 109-897). Ironically, his so-called HIV “viral load” was only 54,890, which is not really high at all, relatively speaking (my own VL has been over a million), and certainly not what one would expect to find in a patient with “full blown AIDS”.
It is not known precisely when or how long this decline in t-cells occurred, because Gos chose not to track them after he quit the ARV drugs more than a decade ago. However, Gos does note that they had dropped to 80 in June, when he was tested against his wishes at Memorial Hermann.
What is known is that this kind of decline in CD4 counts to extremely low number is consistent with what the doctors who first reported gay men were getting sick and dying from illnesses that were rare in healthy people… including CMV, one of the original “AIDS-defining” opportunistic infections.
PCR – it isn’t just for HIV anymore
The diagnosis of CMV that Cy-Fair doctors received too late was performed by PCR, or polymerase chain reaction. This is the same laboratory technology used to produce the so-called “viral load” tests for patients diagnosed HIV-positive. Its use for diagnostic purposes is often disputed by AID dissidents, including the man who discovered the technique, Kary Mullis. It is often dismissed as “meaningless”, because only portions of the HI virus’ genetic material is used for measurements, leading some to speculate that the test may be measuring inflammatory cellular debris rather than a specific pathogen.
There is no quantification of Gos’ CMV viral load; only a qualitative PCR result of positive or negative is offered. That this test, in this case, was validated only a week later by an independent autopsy is worth noting here. I do not have sufficient knowledge or expertise to draw conclusions, but I do consider it significant enough to include in this report.
Chronic Granulomatous Disorder
In a September 12, 2012 update to his book, Gos wrote about a significant discovery in his quest to understand what might be causing his health problems. Several members of his family have experienced their own immune-related illnesses, and the evidence that a hereditary factor might be involved is strong. In this case, Gos writes about his older sister Cassie who was experiencing some symptoms that closely matched his own.
After many months of trying to figure it out and even a trip to Johns Hopkins Medical Center, ruling out disease after disease, Cassie’s doctors have finally settled on a diagnosis: Chronic Granulomatous Disorder.
CGD is a genetic immunodeficiency syndrome in which the phagocytes (neutrophils) are defective. Healthy phagocytes ingest invading bacteria, then kill it with hydrogen peroxide that they synthesize internally. But in someone with CGD, the phagocytes can’t synthesize the H2O2 molecule, so instead of being killed, the invader is merely encapsulated, trapping the infection within the cell, and this begins the seed of a granuloma, which grows into a granulomatous lesion, often with necrosis. It can happen anywhere in the body, including on internal organs, but most of them occur near the skin, in the lungs, or in the colon.
Symptoms include (get this) atypic pneumonias, abscesses of the skin, tissues, and organs, suppurative arthritis, bacterial and fungal infections of the skin and even the blood, opportunistic infections, including (our old friend) aspergillus, one of the causes of my atypic pneumonia. Also, CGD is known for being misdiagnosed as Crohn’s disease, due to the intestinal lesions that sometimes form.
My sister and I have exchanged photos of our lesions, and she’s showed my pictures to her doctor, and Cassie, her doctors and I are all in agreement that we appear to have the same disease. In addition, I have shown my penis to my doctor, and she agrees that it looks to her like CGD.
But you know something else Cassie turned up in her research? Patients with CGD seem to have something of a predisposition to test positive on HIV tests. Note that I didn’t say they have a predisposition to become infected with HIV (though that seems to be the common assumption); I said that they have a predisposition to test positive. The difference is significant: What if they are predisposed to test false-positive? Many of the things that are known to cause false positives are infections, including fungal infections, viral infections, bacterial infections, respiratory infections, and the like. But we don’t know all of the things that will cause false positives, and CGD is so rare (about 1 in 200,000 people in the US have it, and there are only about 20 diagnoses per year,) that if it causes false positives, there would be lottery odds against there being any documented cases of CGD causing false positive HIV tests in the medical literature. If CGD causes false-positives, in other words, we wouldn’t know it.
What we do know is that CGD can cause severe, chronic, and/or recurrent cases of some of the very infections that are known to cause false positives. Over time, one is virtually guaranteed to have had enough infections and a wide enough variety of these infections, and if one had, say, multiple immune/autoimmune diseases on top of this, then sooner or later one is likely to have enough different reasons for testing false-positive that they would test false-positive and probably continue to consistently test false-positive for the foreseeable future, particularly if their doctor “locked in” their serostatus by vaccinating them for everything under the Sun.
So, did Gos Blank die of AIDS?
That was the original question, was it not? That is what both AIDS dissidents and the AIDS apologist trolls are waiting to hear, isn’t it?
I don’t know how it is possible to come to any conclusion that would satisfy either side, let alone both. Any answer given would only raise more questions, though not many new ones really. Did Gos choose to ignore some very troubling signs the last year of his life? Or did doctors fail to adequately pursue the evidence Gos tried to provide of other possible explanations, such as CGD? I had to use a spreadsheet just to try to keep the list of Gos’ complaints in chronological order. From a distant retrospective that Gos did not have the luxury of having, it appears that he was caroming from one medical crisis to another for more than a year and a half.
There are so many factors other than “HIV” that could explain a decline ending in death. Excessive and sustained use of antibiotics and steroids to “spot treat” symptoms immediately comes to mind, for example. It’s also easy to see that Gos was selective about which tests and diagnoses he was going to pay attention to, while ignoring those that did not fit his own understanding, such as the decline in CD4 counts.
It is bewildering that despite so much medical attention, no one tested Gos for CMV earlier than they did, but there is a reason even for that. Only transplant recipients and people diagnosed with “AIDS-like” conditioned are routinely tested for CMV.
Yes, there are still a lot of questions and before anyone starts dancing on Gos’ grave, let’s examine some of them… in Gos’ own words as much as possible. (all blockquotes from this point on are from Gos’ book)
One thing that I’ve learned over the years about all sorts of chronic disease, be it Crohn’s, asthma, or even this disease that I’ve come to call “AIDS” for lack of a better term, is that chronic disease tends to be cyclical. Self-feeding cycles can establish themselves, resulting in a dramatic worsening of the disease, perhaps to the point of hospitalization or even fatality.
“For lack of a better term”, even Gos called it “AIDS”. Don’t misunderstand. Nothing about Gos’ illnesses or death provides any evidence for HIV as the sole and sufficient cause of his ill health. How can that explain Gos’ history of chronic illness and immune dysfunction from the time of his birth? Why should AIDS be considered a more likely cause than CGD—another “AIDS-like” disease?
I was born in 1968 with the worst case of thrush that our family doctor had ever seen in his long career. For much of my early years, my mother was convinced that there was something medically wrong with me, because I didn’t grow or gain weight quite the same as her other children had — in fact, for most of my childhood, my younger sister and I were roughly the same size and weight (and my sister, two years my junior, was always rail-thin and petite as a child.)
If Gos died of AIDS, or even an “AIDS-like” condition (his term of choice), does that not prove that HIV exists? Hardly.
In any case, I am fairly sure from the cumulative evidence that my AIDS-like disease is not caused by HIV, is not sexually transmissible, that it causes me to test strongly and consistently false positive on HIV tests, and that I don’t actually have HIV (as evidenced by the fact that thousands of unprotected vaginal and anal sexual experiences have not resulted in a single one of my partners becoming infected.)
At this point, one is forced to wonder how many “AIDS” patients are actually people like me who test false positive on HIV tests because they have AIDS-like diseases that cause them to test false positive. How many, like myself, get sicker and perhaps even die after an HIV misdiagnosis because their real health issues are ignored by their doctors while they are given toxic antiretroviral drugs for a virus that they don’t actually have? If this could happen to me, then how many other “AIDS” patients out there are the victims not of a virus, but of a pattern of misdiagnosis and inappropriate medical treatment?
And more importantly, if I’m not the only “AIDS” patient to have the experience of being misdiagnosed HIV-positive because of an AIDS-like illness that actually predated seropositivity, what evidence do we have that even one “AIDS” patient is actually suffering from infection by a “virus that causes AIDS”? What if I’m not the exception, but the rule? Is it possible that no one who tests positive and gets sick actually has this time-traveling, shape-shifting, teleporting, apparently sentient “virus that causes AIDS”? Is it possible that, in fact, there’s no such thing?
I will not pretend to know for a fact that HIV does not exist at all, but I will say that, having examined mountains of peer-reviewed evidence, explored many different hypotheses concerning the relationship (or lack thereof) between HIV and AIDS, and read pretty much everything I could get my grubby little paws on, I remain unconvinced that HIV exists. I’m not 100% convinced that it doesn’t exist, but I have zero conviction that it absolutely does.
However, if we assume that HIV exists, what evidence is there that it’s actually the cause of AIDS, rather than being merely another common opportunistic infector in a subset of patients who are typically riddled with opportunistic infections?
Indeed, in an interview for the film House of Numbers, Dr. Luc Montagnier, (Nobel Prize 2008, for the discovery of HIV,) said, “We can be exposed to HIV many times without being chronically infected. Our immune system will get rid of the virus within a few weeks, if you have a good immune system.” He went on to express the opinion that the immune systems of many HIV-infected Africans could naturally fight off HIV if their nutrition were improved.
Notwithstanding the fact that Montagnier himself (obviously) believes that HIV exists and that it plays a causal role in AIDS (though he believes that co-factors are required,) this statement on his part calls into question the whole concept of causality where HIV is concerned, because the implication is that one has to be immunodeficient already in order to be chronically infected by HIV.
Gos knew something was wrong at least a year before he died. I remember the uneasy feeling I had after phone visits with him, when he would talk about the things he wanted to happen if and when he died. More than once he emphasized that he was experiencing serious health issues (though I did not realize just how serious they were until I met and visited with his wife in person). I’ll never forget him telling me to “hold on”, while he made a dash to the bathroom because of the explosive diarrhea he was experiencing.
As much as I admire and love Gos, I can’t help but think he would hate for his death to be in vain. There are lessons to be learned, and he was a phenomenal teacher and preacher.
For that reason alone, it seems appropriate for Gos to have the final word here:
Today, I hold no delusions of immortality. I have little expectation that I’ll live to be 100, and zero expectation that I’ll live forever. I strongly suspect that in fact when I do die, it may well be of one or more diseases which will fit the profile of AIDS, even if HIV doesn’t exist. Then again, considering the fact that I’ve smoked for roughly a quarter-century of my life (though I’m in the process of trying to quit for the umpteenth time as I type this,) I may just as soon die of “AIDS-related” asthma, “AIDS-related” heart attack, “AIDS-related” lung cancer, “AIDS-related” stroke, “AIDS-related” emphysema, “AIDS-related” pneumonia, or any number of other smoking-related diseases. I strongly suspect that if I don’t die of accidental or other unnatural causes, it will probably be a combination of all of the above factors that ultimately kills me – if nothing else, a combination of smoking with a history of asthma and allergies is a sure recipe for death sooner or later. In many ways, I feel that I have already lived longer than I had any right to expect – I’m certainly not kidding myself about living forever any more.
So you be the judge. Do I sound like someone who’s in denial? How is it denial to say, “I have a potentially fatal disease that (for lack of a better word) could be called ‘AIDS’, I just disagree with the popular consensus about its cause”?