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Thread: "Strange Health Issues"

  1. #11
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    Default Re: "Strange Health Issues"

    Quote Originally Posted by John Bleau View Post
    Well, Gos, I for one consider that the deaths of prominent dissidents are sufficiently numerous to give one pause. It could be a statistical anomaly or confirmation bias, but I think it is the result of a number of factors, some of which relate to the positive test result, some to the negative focus those dissidents receive.

    It is in that light that I find The Perth Group's work so compelling - it allows for the possibility of higher mortality among HIV positives while explaining why so-called HIV is so hard to transmit.
    You may well be right, John, but that's at least part of my point. How many HIV-negatives could have survived the sort of stresses that Christine Maggiore lived with for the last 2 1/2 years of her life, and how long could they have survived? How many could have survived as Karri Stokely attempted to do, with a huge rectal abscess that required surgery, while doctors refused to give them the medical attention they needed because they refused to take toxic black-box drugs that had previously caused diarrhea in them, thus making the abscess that much worse?

    These prominent dissidents are exceptional cases to begin with, merely by virtue of their prominence, and yet there are those who would treat them as though they were the rule. Less prominent people like odo survive much longer, but I don't see any page at AIDSTruth or any other AIDS-related site dedicated to "Denialists who have survived for decades", have you? We KNOW they exist -- I've met dozens of people like odo both here and at the RethinkingAIDS Facebook page, and they EASILY outnumber the prominent dissidents who have died.

    Personally, I expect to publish my own autobiographical book about AIDS within a few short months, and if it draws any real attention it will expose the AIDS paradigm for the homophobic/racist pretext for genocide that it is. Don't expect me to live for five years after its publication -- I certainly don't have any such expectations. I've already had a doctor attempt to murder me just within the past three months, and I don't expect them to stop trying until I'm dead, ESPECIALLY after I've published.

    ----
    --- Gos
    --- http://nerosopeningact.bandcamp.com
    It is NOT denial to look Chicken Little right in his beady little eyes and say, "That was an acorn, you idiot!"

  2. #12
    odo is offline Contributing Member (10-99 posts)
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    Default Re: "Strange Health Issues"

    Actually Gos, I am a rather prominent person in my community. Not widely known like Christine or Karri, but known as a community leader. I am a "closeted" or "quiet" dissident. Some people know what I think and how I feel (those I can trust with this information) about this crime/scam. Many do not - because I am an activist drop out. My focus as an advocate/activist was food/nutrition/housing/advocacy/empowerment. NEVER pharmaceuticals. My knowledge and experience is deep and broad.

    I am waiting for the proper moment and venue. It will come, and I will make myself known.

    In the meantime, I am well aware that should I present for emergency care for anything from a broken bone to pneumonia, I will be summarily poisoned and eliminated - since after all these years, there cannot possibly be any red blood left in my vessels. Green pus is what I will exude - and I am therefore a danger to the healthcare workers who need to set that bone or stitch that wound.

    Having worked in healthcare, I am aware that the other thing that will happen is that most of the nurses and doctors will actually begrudge me that care - behind my back. On their way to providing a procedure, they will joke with one another: "Here goes a waste of time on another undeserving miscreant. My dad could have his bypass if we didn't have to provide medical care to this filthy piece of crap..."

    It's true. It's ugly. When I said "marked for termination," I was not joking.

  3. #13
    Snitbo is offline Contributing Member (10-99 posts)
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    Default Re: "Strange Health Issues"

    Quote Originally Posted by odo View Post
    Actually Gos, I am a rather prominent person in my community. Not widely known like Christine or Karri, but known as a community leader. I am a "closeted" or "quiet" dissident. Some people know what I think and how I feel (those I can trust with this information) about this crime/scam. Many do not - because I am an activist drop out. My focus as an advocate/activist was food/nutrition/housing/advocacy/empowerment. NEVER pharmaceuticals. My knowledge and experience is deep and broad.

    I am waiting for the proper moment and venue. It will come, and I will make myself known.

    In the meantime, I am well aware that should I present for emergency care for anything from a broken bone to pneumonia, I will be summarily poisoned and eliminated - since after all these years, there cannot possibly be any red blood left in my vessels. Green pus is what I will exude - and I am therefore a danger to the healthcare workers who need to set that bone or stitch that wound.

    Having worked in healthcare, I am aware that the other thing that will happen is that most of the nurses and doctors will actually begrudge me that care - behind my back. On their way to providing a procedure, they will joke with one another: "Here goes a waste of time on another undeserving miscreant. My dad could have his bypass if we didn't have to provide medical care to this filthy piece of crap..."

    It's true. It's ugly. When I said "marked for termination," I was not joking.
    No! As a nurse I would never begrudge a person care no matter what their underlying clinical diagnosis is. I know nurses that would rather have HIV than say cancer or some other dreaded disease. My guess is that they know you can overcome an HIV diagnosis with proper nutrition etc. Please don't ever think that we as nurses would ever look down upon someone with an HIV diagnosis! I never have and never will.

    I worked in the ER on a gentleman who was dying and was HIV pos. I (we)worked so hard trying to revive him. We brought him back twice after coding both times! He only lived a few weeks longer - he was in the ICU and they did everything they could for him. I only heard positive professional remarks coming from the team! I was proud that I was able to give him a few extra weeks of life!
    Last edited by Snitbo; September 8th, 2013 at 09:32 PM. Reason: Adding:

  4. #14
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    Default Re: "Strange Health Issues"

    odo,

    I know all too well the truth of your words. Earlier this year, I was admitted to a local hospital with allergic pneumonia, where I met a doctor who made an honest attempt at murdering me.

    When I was admitted, I was so weak that I couldn't have gotten out of bed. They did sputum cultures, blood cultures, and all sorts of laboratory tests looking for infection, and couldn't find any evidence of anything infectious, not even a secondary infection (which was actually pretty surprising, since allergic pneumonia typically comes with a side-order of secondary infection, even if it's just a sinus infection.)

    I was started on a regimen which was appropriate for allergic pneumonia: IV antibiotics and IV corticosteroids. On this therapy, I began a spectacularly rapid recovery.

    Day One, Thursday, June 13: I had Lisa (my wife) bring me to Hermann Memorial Hospital in the Woodlands. I told her to bring me there at about 10PM, but it ended up taking me about an hour and a half just to get out of bed and get dressed, so we ended up arriving at the ER shortly after midnight, in the wee hours of Thursday morning.

    Upon arrival, my vitals were taken. I had a fever of 102.8 and my O2 uptake was 82%. My lips and fingernails were the prettiest shade of blue you'd ever seen, and my pecker was a nice shade of dark purple. I was more or less immediately triaged right in and given a private room, where the medical staff began treating me for allergic pneumonia (self-diagnosed at this point), with the standard treatment of IV corticosteroids and IV antibiotics (the antibiotics are given prophylactically to prevent infection, because while allergic pneumonia is not infectious per se, it can make you vulnerable to all sorts of opportunistic lung infections, regardless of your HIV status.)

    At this point, they were completely unaware of my HIV status, and Lisa and I had gone to great lengths to keep them from even SUSPECTING that I might be HIV-positive - however, someone may have overheard me bragging to Mom over the phone about how we'd kept them in the dark and "fooled" them into treating me for allergic pneumonia rather than AIDS pneumonia, and if so then it's my own damn fault that they ended up testing me for HIV anyway. However, the ruse is probably the first reason I am not dead right now, because it bought me at least two days before they could determine my HIV status, and that was just long enough for me to begin to respond QUITE well to a treatment regimen intended for allergic pneumonia.

    Day Two, Friday, June 14: I got up out of bed and walked for the very first time since my admission. I was in no shape to run a marathon, but I was able to sort of amble from by bed out into the elevator lobby, sit down there and rest on a bench for about 5 or 10 minutes, then get up and walk back into my room. I only did this once, and afterwards I felt like I'd just played Game 7 of the NBA finals, but at this point, little more than 24 hours into my treatment, that was an accomplishment.

    Day Three, Saturday, June 15: I got up numerous times, walked out to the elevator lobby, and dragging my IV stand alongside me, I proceeded to walk "laps" around the elevator lobby, then rested up a bit for my return to my room and did some stretching exercises (oxygen deprivation causes lactic acidosis in the muscles, as you're probably already aware, and stretching was as essential for me to walk as it is for an athlete to work out, and for the same reasons.) Then, after "doing laps", I would return to my room and actually SING. Could I have performed at Carnegie Hall? No. Could I keep it up for more than two minutes without getting winded? No. But the idea wasn't to entertain the other patients nor to show off my endurance -- it was for EXERCISE. Singing is by FAR the best workout you'll ever give your lungs.

    That same day, I received a visit from a new doctor -- an infectious disease specialist, who informed me that I'd tested positive for HIV and that I had 80 T-cells.

    However, by the time he came into my room to discuss my HIV status and my T-cell count, I was able to say, "Yes, I'm damn well aware of my HIV status and even that I have AIDS, but you aren't going to change ONE MOTHERFUCKING THING about my treatment in light of this new information, because I'm already responding so well to treatment that there's really no reason to change course, and if you change ANYTHING, I'm calling my wife to come pick me up and I'm getting out of this stretcher and leaving this hospital. I'd rather die at home than let you kill me!"

    And for what it's worth, because I WAS responding so well to treatment by this point, I was able to get ALL of the doctors -- INCLUDING this ID specialist -- to agree that "if it ain't broke, don't fix it", and I extracted a promise from all of them that they would not change anything about my treatment so long as I continued to respond so well to the treatment. By the end of Day Three, every single one of my doctors were openly telling me that I'd be going home that night -- there was really no medical reason to keep me there. My lungs were clear if still a bit weak, there was no infection except a touch of thrush caused by the antibiotics and corticosteroids, and I should be able to easily finish my recovery while sleeping in my own bed.

    ...All of my doctors, that is, except for one: The ID doc. They wanted me to consult with him just one more time before they'd clear me for discharge. Which left me thinking, "Fair enough. I'll talk to the ID doc and then I'll call the wife and have her come get me out of this mausoleum, and I'll finish my recovery in the comfort of my own bed on oral versions of the IV meds that they were giving me, and I'll be out of here about as quickly as Jesus rose from the dead."

    No such luck. Which leads us to...

    Day Four, Sunday June 16: The ID specialist comes into my room, and my first question is, "OK, doc, am I going home today?"

    "I'm afraid not. We need to keep you in the hospital for observation and treatment."

    "Well why not? None of the other doctors seem to think there's any reason for me to be in the hospital -- they all said I should have been gone yesterday! Why do YOU want to keep me here, when being in the hospital is contributing to my increasing stress level and jeopardizing an otherwise beautiful recovery from pneumonia?"

    You'll have to pardon my French here, but his answer, by it's PURELY speculative nature, burns my fucking ASS just to think about it. In his most authoritarian, pompous tone of voice, he said, "Welllll, you MIIIIGHT have pneumocystic pneumonia (AKA AIDS pneumonia), and the steroids MIIIIGHT be masking the symptoms, and you MIIIIGHT have any number of opportunistic infections that we were unable to detect with the pile of cultures we did on your blood and just about every other fluid that came out of any orifice in your body, and if you go home right now these infections MIIIIGHT manifest themselves and kill you."

    "Well Doc, for what it's worth, I have serious doubts about my HIV diagnosis for a number of reasons, I'm too short-winded to give you any long-winded explanations, but here's the basics: Number one, out of 60-some-odd medical conditions that have been linked to false positive HIV tests, at least half a dozen or more have actually been diagnosed in my case, so I have a LOT of reasons to test persistently false-poz. Number two, in the 16 years since I was supposedly infected, I have had WELL over 10,000 unprotected sexual encounters -- both vaginal AND anal -- with a variety of women including my wife (and yes ALL of them were aware of my alleged HIV status), and EVERY SINGLE ONE of these women remains HIV-negative to this day. Number three: Without giving you more information about my sex life than you want, every single time I tell a doctor how I supposedly got HIV, they always say the same thing: 'You can't get HIV that way; it's like getting pregnant from a toilet seat.' By this point I even have a scripted response that I recite from memory: 'Well Doc, that's my ONLY "risk" between my last negative test and my first poz. The ONLY other person whose bodily fluids I was exposed to during that period was my daughter's mother, and she's one of the HIV-negative women I mentioned earlier, so I plainly couldn't have gotten it from her! So take your pick: Either I 'got pregnant from a toilet seat', or your test is wrong and I don't really have HIV in the first place, or you need to call the Pope because I'm a certifiable case of Immaculate Infection and the Antichrist MIIIIGHT spring forth from my butthole at any moment!' At that point, the good doctor ALWAYS decides that I must have 'gotten pregnant from a toilet seat', because the Antichrist and false-positive bisexual males are purely creatures of myth and ignorant superstition, but people get pregnant from toilet seats all the damn time!"

    ...And yes, I said ALL of the above as a single paragraph, without getting winded! Oh yeah, I was REALLY dying from AIDS pneumonia at this point!

    So he asks, "Have you ever gotten a viral load test done? Did you have a viral load?|"

    I answered as honestly and completely as I could. "Yes, I used to monitor my viral load about 13 or 14 years ago. Before I started AIDS COCK-TAIL drugs (WONDERFUL name for them, no?) my VL was 68,000. While I was on ARVs, it dropped to non-detectable. and when my doctor ordered me to stop taking them because they were doing more harm than good, it came back up to about 17,000 and it wasn't long after that that I stopped monitoring. You wouldn't happen to know what my current VL is, would you? Not that I give a shit, but just out of curiosity I'd like that information."

    "I'm sorry, I don't have that information for you, but if you had a viral load at any point, and especially if it went down to non-detectable when you took ARVs, then that's definitive. It doesn't matter whether you believe you have HIV -- you've got it!"

    I replied, "I don't consider that definitive at all, Doc. I've met people who were false-positive at one point and took ARVs because they'd been TOLD that they were infected, and out of about half a dozen or so of these people that I've personally met, EVERY SINGLE ONE told me the same story: When they took ARVs, their viral load dropped and their CD4 counts went up. Now think about that for a second: These people DIDN'T have HIV, so why would they have a viral load in the first place, and why would it become non-detectable when they took drugs that were intended to fight a virus that they'd never had in the first place? Are you familiar with a scientist named Kary B. Mullis?"

    "No I'm afraid I don't know who that is."

    "Nobel Prize in Chemistry, 1993, for inventing the Polymerase Chain Reaction technique, (AKA PCR) which is used, among other things to count so-called 'viral load' in AIDS patients. HE calls it a 'viral load of crap', because the PCR primer that they're using to look for 'HIV particles' don't represent the whole genome, but only less than three percent of the total HIV genome, and NONE of the gene fragments they're looking for are specific to HIV -- ALL of them can be found, in fact, in the human genome itself. In the 1990s a researcher named Piatak published a paper in which he demonstrated from the existing literature that so-called 'viral load tests' overestimate the number of infectious particles by a factor of anywhere from 10,000 to ten MILLION. That means if your 'viral load is 1 million', you MIIIIGHT actually have one TENTH of one viral particle per ml of blood. Or you might have none -- I actually have a copy of one published paper on my computer at home that I could show you in which the researchers actually used a control group of HIV negatives (control groups are NEVER used in HIV research, even when there's no reason not to do it. It's like HIV researchers have decided that the classic Scientific Method that you and I were taught in high school science is quaint and outdated, and when you insist that they adhere to it, they'll actually accuse you of trying to hold them to an impossibly high standard!) But when THESE researchers used a control group of HIV-negatives, they actually had BETTER LUCK finding 'HIV particles' in the control subjects who DIDN'T have HIV than in their HIV-positive experimental group. They found 'HIV particles' in 60% of their control subjects, but only 13% of patients who were SUPPOSEDLY infected! Doc, I don't care what YOU believe, but I can HARDLY accept a PCR viral load as 'definitive'! I will tell you this, 'definitively' -- I MIIIIGHT be about to sprout wings and and turn into a giant purple lizard and fly the fuck right out of here, but I don't see any medical evidence that that's about to happen either. You can't keep me here against my will and unless you can prove to me 'definitively' that I DOOOOO have an opportunistic infection or for that matter ANY infection that requires me to stay here so that you can circle my stretcher like some kind of human vulture and wait for me to die like you think I should, I WILL NOT be here tomorrow morning. Consider THAT 'definitive', from me to you."

    With that, I used the old car salesman trick of making a motion to roll over in my stretcher to turn my back on him, and "Dr. Definitive" shut his fucking mouth about viral loads being definitive, because he KNEW I had him dead to rights. He hadn't read the medical literature and I HAD, and he was being EPICALLY PWNED by a high school dropout who had the additional disadvantage of being short-winded to boot in this VERBAL debate, and he KNEW he couldn't hold his own against this wheezing "AIDS pneumonia patient" with a 10th Grade education and a GED from the State of Louisiana!

    So he gets up and tries to pull the same car-salesman tactic on me (apparently unaware that I'd practically grown up at a dealership), and as he reaches the door, he stops with his hand on the knob, turns back to me and says, "I really think you should stay in the hospital. We can't keep you here against your will, but if you leave today it'll be against medical advice, and I can promise you that if you stay, we will not change your treatment in any way so long as you continue to recover."

    By this point in the conversation, all of my long-winded speeches to this walking God Complex had rendered me pretty weak and short winded, so I wasn't really thinking as critically as I should about what he was saying, so I thanked him for the promise, but assured him that I still didn't want to be in the hospital at the end of the day unless he could show me some definitive proof that there was SOME medical reason for me to stay. But if I'd been getting enough oxygen to my brain, I have to wonder whether I'd have read between the lines and recognized his thinly-veiled threat to sabotage my recovery. What he was REALLY saying was, "If you leave this hospital when I don't think you should, I AM going to order changes to your treatment, and you'll be back here within the week with a colon full of abscesses and/or lungs riddled with pneumonia, and if you come back to this hospital and I get the chance to revisit your case, I'm not going to call your illness 'Crohn's disease' or 'allergic pneumonia' -- I'm going to call it 'AIDS', and you will ONLY get treatment appropriate to an AIDS patient, and you'll get NO treatment for your Crohn's or your allergic pneumonia, and I'm going to motherfucking DANCE around your stretcher like a human vulture and WATCH you die, and as you breathe your last breath, the last thing you're going to hear is my voice saying, 'I told you so!'"

    And he at least made a genuine attempt to back up that veiled threat! He didn't succeed, because I am no fool and my wife is even smarter. If not for her, I'd be a cooled corpse right now.

    When I was discharged, I was sent home with prescriptions for three different antibiotics, and NO corticosteroids.

    If you know anything about corticosteroids, you know that it can be dangerous to suddenly go from a high dose to nothing all at once. You're supposed to taper down, because corticosteroids are a naturally-occurring hormone that your body produces in order to regulate inflammation, and when you take them, your body stops producing its own and if you suddenly stop, then every inflammatory condition you might have -- things like asthma, Crohn's, allergies -- you know, diseases that I actually DO have -- are going to arrive at your house all at once with their unemployed cousins in tow, and they're gonna party on your couch and roll joints on your coffee table for a month of Saturdays.

    Now, I have been advised by no fewer than two different physicians that after only four days, there's really no guarantee that you'll experience withdrawals from corticosteroids, even at the high IV dose that they were giving me in the hospital.

    Here's the thing: I don't need any guarantee of what MIIIIGHT happen, because here's what DID happen:

    Day One at home, Monday, June 17, 2013: I took a SERIOUS turn for the worse. The previous evening, I'd won a debate with an ID specialist over the 'definitiveness' of HIV tests, but by Monday morning, I couldn't have told you my freaking name! I was delirious, and so weak that Lisa practically had to FORCE me to sit up in bed so that I could take my medicine. I was completely oblivious to the fact that they hadn't sent me home with any steroids, but Lisa immediately recognized the symptoms of a steroid crash and she called one of my doctors and had her phone in a prescription for prednisone. That very evening, when she forced me to sit up in bed to take my meds, she included a dose of prednisone.

    As she did so, she actually came right out and said, "Gos, I do believe that this doctor was TRYING to sabotage your recovery!" Lisa is NOT a paranoid woman, so for her to say something like this, I don't have to necessarily take her word as solid gold coin, but I DO have to at least take it seriously. I do believe that this doctor carried out his implied threat by switching me to a treatment regimen more appropriate to AIDS pneumonia than to the allergic pneumonia that I ACTUALLY had. And if he'd succeed in killing me, he'd even have plausible deniability in any potential lawsuit: "The patient had AIDS pneumonia and he insisted on discharging against medical advice, so I prescribed him the appropriate medication for AIDS pneumonia and sent him on his way." Never mind the fact that it was NEVER AIDS pneumonia, because I can guarantee that the hospital's record and particularly HIS case notes will PLAINLY state otherwise. "Open and shut case, the Court rules in favor of the defendant, plaintiff will pay the good doctor's legal fees as required by law. Next case!"

    Day Two at home, Tuesday, June 18: ...and the very next morning, I was strong enough to get out of bed and take charge of my own medication (after asking Lisa, of course, what I was supposed to be taking -- again, I'd been completely out of it all day Monday.)

    Day Three at home, Wednesday June 19: I continued to recover, although I still remained as weak as a kitten.

    Day Four at home, Thursday June 20: Prior to my hospitalization, I'd made an appointment for the 20th with my allergist (who BTW DOESN'T know my HIV status for this very reason), and I kept the appointment, bringing with me the pill bottles for the three different antibiotics I'd been prescribed.

    When I showed him the bottles, his eyes grew to the size of dinner plates. "They prescribed THIS to a Crohn's patient? For ALLERGIC pneumonia??? Why would they DO that?"

    I kind of hemmed and hawed and said that I'd left the hospital against medical advice and they were still concerned about secondary infection yadda yadda yadda, and so that must be why they'd prescribed so many different antibiotics, but I'm not sure he bought it -- this doctor is NO dummy, and you've gotta get up pretty damn early in the morning to slip a fastball past him. He didn't come right out and SAY that he didn't believe my story, but I could sense the wheels turning -- "This isn't a treatment regimen for a Crohn's patient with allergic pneumonia, it's the sort of thing a doctor would prescribe for a patient with AIDS pneumonia!"

    Long story short, I was very nearly murdered by a quack who was too fucking proud to admit that he'd been fairly beaten in a medical debate with a high-school dropout.

    ----
    Last edited by Gos; September 8th, 2013 at 09:46 PM.
    --- Gos
    --- http://nerosopeningact.bandcamp.com
    It is NOT denial to look Chicken Little right in his beady little eyes and say, "That was an acorn, you idiot!"

  5. #15
    odo is offline Contributing Member (10-99 posts)
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    Default Re: "Strange Health Issues"

    Snitbo, There are many wonderful nurses out there, I know. You are probably one of them. Some are my best friends who also know how I feel and acknowledge that the ugliness is there. Perhaps these comments I have heard loom too large! But, I have heard them and they loom. Chances are, you have too....

    Gos, I am so glad you got through that. Me, I'm scared of what might happen to me. I need a "Lisa"! Glad you have one.

  6. #16
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    Default Re: "Strange Health Issues"

    In terms of how doctors and nurses treat patients who are known to have been diagnosed/labelled 'HIV+' (whether or not they are being treated for a suspected 'aids' related condition or not, we know that there are times when there is a lack of care and compassion, and in the 80s to early 90s that was clearly rife.
    Now I really don't see or hear any evidence of that in the UK, at least not in a big city like London. In fact, in my personal experience I couldn't praise nurses, Doctors and health professionals highly enough for the way they have treated me. The moment clinical staff became aware I was diagnosed 'HIV+' they were especially caring and sensitively enquired whether anyone who visited me didn't know about it, and if so did I want to ensure everyone knew not to mention it. As it was everyone who knows me is totally relaxed and aware of my views. But it was professional and kind of those staff to be so careful.
    That brings me to Gos's dreadful experience in June this year. That ID doctor would face being struck off the register of Doctors allowed to practice if he was in the UK. The treatment he got related to steroids was positively criminal. I was on steroids and it was tapered down to a miniscule amount over a few weeks, and I have a steroid treatment card I carry in my wallet and am told I must carry for at least a year *after* steroid use ended.
    I can also say from my personal experience of inpatient care with Pneumonia (that did turn out to be PCP(J)) and that of two people I know, all here in London and the South East of England, in the last 12 months, was frankly admirable. If the experience of myself and the two people I know (all 'diagnosed/labelled' 'HIV+) was representative, then I am grateful to superlative NHS treatment.
    In my specific case, I simply refused to allow testing or divulge my status for over 48 hours after first attending the emergency room of one of the UK's very best Hospitals. I wanted them to do what they did: simply follow standard protocols for testing for numerous causes (various bacterial types, lung blood clot, H1N1 flu related pneumonia and PCP(J)) and they gave me treatment for all of them.
    Indeed they were keen to test for 'HIV' since almost from the beginning they suspected PCP(J) but my oxygen levels were so very very poor within 24-36 hours of admission that carrying out a Bronchoscopy was too dangerous to carry out. I was on a very heavy duty CPAP mask, the next potential stage being put on a ventilator in a coma. I wasn't far from that.
    All the Emergency Room Consultants, and the Intensive Care Consultants (I was placed in a High Dependency Unit within 24 hours, with 6 patients sharing 13 nursing staff and 1 admin staff and 2 intensive care doctors 24 hours a day) were supportive, caring and not in the least pressuring.
    They simply said, they wanted to do a Bronchoscopy at the earliest opportunity, and when results for all forms of pneumonia other than PCP(J) were received, if negative they would stop all drugs except for PCP(J), but it would help them to know if I was 'HIV+' since if so, in their vast experience as me being a person of normal good health the chances of it NOT being PCP(J) were almost zero.
    The senior Respiratory Consultant (an almost totally stereotypical upper middle class rugby-playing Oxbridge-educated late 30s/early 40s smoothie) was very relaxed and told me in detail of his wide experience of PCP(J) cases and that he was 99.99% sure I was a classic case. He was personable and persuasive. I did a few days later have a Bronchoscopy and the result was clear. But because after 48 hours I told them my status, I was spared multiple drugs for other causes of pneumonia, and the sole (dreaded) Co-Trimoxazole did its work and my recovery was rapid.
    At no time was I bullied or pressured, and the issue of anti-HIV drugs was not even mentioned for a week, and was told they were NOT even going to recommend starting them for at least two weeks. After a week I was introduced to the man who is now 'my' 'HIV' Consultant, and we had many in depth discussions about anti-HIV drugs and there toxicities, he was clearly not too experienced with patients with my level of knowledge, and seemed genuinely grateful for smart phone web links I gave him to studies on bone demineralisation, and why I had no intention of taking any of the most common first line drugs. He was happy that I would choose exactly what drugs I would consider taking. There was no need for me to tell him I only intended taking a half-dose of one PI - the same as Jonathan chose - and stopped the co-trimoxazole prophylactic the moment I was discharged - no need to waste energy on that argument with them, and I also insisted on self-medication in the hospital itself so they couldn't actually witness what I was taking.
    My local authority funded me at enormous expense to spend 2.5 weeks in a wonderful rehabilitation unit run by a Christian charity (but with no bible-bashing!) exclusively for us 'lepers' - it was like a 5 star hotel, with wonderful caring staff, great ensuite room with TV and internet, fantastic food, a great Physiotherapist and a gym. After that I had regular visits and phone calls from a lovely community nurse.
    Frankly after 7.5 weeks of the nicest kindest care I had ever experienced I was feeling in better shape than I had in a couple of years.

    I still go back to the same hospital's 'HIV' clinic for check ups and blood tests; I've had thorough heart check ups, thorough optical tests, brain MRI, a DEXA Scan (Dual-energy X-ray absorptiometry) before I was discharged on my bone mineral density, which I insisted on as a precondition of taking any anti-HIV drugs and they agreed I could have one every year (rather than every 3 years which is the standard), and they literally 'coo' at my blood markers and lung function tests, thinking I'm on 3 anti-hiv drugs and co-trimoxazole, rather than the half-dose of one I actually take.
    I actually quite like going now - I am in total control of what medication I do take, which is minimal and will be halved from October at my own choice.
    I appreciate that it is not necessarily possible to get that kind of treatment everywhere, or possible for everyone to engage in that level of subterfuge with their doctors to achieve what they want.
    But it is possible.

  7. #17
    Paulrevere2011 is offline Contributing Member (10-99 posts)
    Join Date
    Sep 2011
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    Default Re: "Strange Health Issues"

    Quote Originally Posted by Gos View Post
    odo,
    ........
    Long story short, I was very nearly murdered by a quack who was too fucking proud to admit that he'd been fairly beaten in a medical debate with a high-school dropout.

    ----
    Thanks for your story. So, I assume you continued to recover? On what regiment?

  8. #18
    Join Date
    Apr 2009
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    Houston TX
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    Default Re: "Strange Health Issues"

    Quote Originally Posted by Paulrevere2011 View Post
    Thanks for your story. So, I assume you continued to recover? On what regiment?
    I did. Primarily on prednisone.

    My doctor instructed me to discontinue the Bactrim immediately, but he wanted me to continue taking the other two antibiotics since I only had another 5 days or so on them. I was unable to tolerate the side effects, however, and I discontinued both of them within another 48 hours. (I have Crohn's disease, and oral antibiotics tend to cause a flare-up. To this day I still have diarrhea so bad as a consequence of the medicines that I took months ago, that I have crapped my pants 4 times in the past week.)

    ----
    --- Gos
    --- http://nerosopeningact.bandcamp.com
    It is NOT denial to look Chicken Little right in his beady little eyes and say, "That was an acorn, you idiot!"

  9. #19
    Join Date
    Feb 2009
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    Default Re: "Strange Health Issues"

    Gos, thanks for your story.

  10. #20
    Join Date
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    Default Re: "Strange Health Issues"

    Quote Originally Posted by John Bleau View Post
    Gos, thanks for your story.
    Ditto!

    Thank you Gos for your depth of fortitude and spirit!

    May you receive solace and healing power knowing you are appreciated and adored for who you are and the generosity of your sharing.

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