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When I found out my ex was cheating on me, I immediately went to get an HIV test and dumped him. HIV tests were fairly new at the time and we didn't know as much, so when it came back negative, I assumed I dodged the bullet. A few weeks later, I did have a very strange illness which I now know was rife with the classic symptoms of seroconversion illness (it's like a nasty flu bug that clears up on it's own). My ex died in 1990 of AIDS and that should have been a clue and I won't say there weren't clues, but I practiced safe sex ever since and throughout the late 80's and 90's I had no idea I had HIV and it was slowly destroying my immune system. One thing you have to understand is how gradually HIV progresses. You don't notice it. I was in a new job that was really stressful and I assumed the fatigue was mostly a matter of stress. I had also had some issues with swallowing for about a year off and on which I also attributed to stress. That October, I got a cold that wouldn't go away. I literally found myself falling asleep at meetings and eating tylenol to keep a fever down and coming home and going right to sleep. I went to see a doctor who said I just had the "crud" that was going around and although he was concerned about the fever, he assumed it was just a complication and prescribed some Keflex and said I'd feel better in a couple of days. A couple of days later, it hurt so much to breathe that I asked someone for a couple of their Tylenol 3's and then went back to another doctor who took x-rays and diagnosed me with pneumonia and then told me I had a really bad case of candiasis (esophageal thrush) and I only weighed 110lbs. Of course I've always been thin, but I was about 25 pounds lighter than my usual adult weight. And then he popped the really big question: "Have you ever been tested for HIV?"
Psychologically, I was already in a bad place from weeks of being sick, so that made me a basket case for a little while.
We did a battery of tests to determine the type of pneumonia, but never did find out exactly what it was. I was taking two types of antibiotics to try to knock it out and drinking codeine cough syrup and ativan for the anxiety. A week after seeing that doctor, I went to health department (I was paranoid about getting an HIV test in an a setting my insurance company would find out about...silly at the time, I suppose) to get an anonymous HIV test. A week later I got the results back and it was a confirmed positive. The very helpful woman at the health department made a couple of calls for me and by the end of the day, my phone rang and it was the best HIV specialist in my state who told me he wasn't taking new patients, but after a few minutes on the phone said he would take me on as a patient and asked me to come to their lab to have my initial bloodwork done and that he would try to get me in as soon as my bloodwork results came back and that if I wanted to bring my significant other with me, that would be okay with him.
Between pneumonia and recovery and bloodwork and such it was the middle of January by the time I saw my doctor (whom I still see).
During that interminable wait, I took a crash course in HIV. Treatment, side-effects of medications, complications, what the test results for each test meant, etc....
I was hoping for the best and prepared for the worst and the worst is pretty much what I got for my first test results.
The Doc told me I had a viral load of 250,000 per cubic millimeter (a high viral load is considered to be 5000-10000). And of course my immune system was practically non-existant with 22 cd4 cells per cubic millimeter (a healthy individual ranges between 500-1500 cells per cubic millimeter). Given that I spent a month pouring over everything I could learn about HIV and the tests and medications, I knew what the doctor was saying without saying it: I had AIDS (although they call it advanced HIV disease these days).
I told the doctor what MY choice of medications was for HIV. I already knew I was going to be taking Septra (an antibiotic) for prophylaxis against several opportunistic infections, all of which at my level of immune dysfunction I was a prime candidate for. I chose an easy and fairly new regimen of Sustiva and Combivir. Sustiva had been on the market for only a few months, but it showed great promise in clinical trials and had an extremely long serum and intra-cellular half-life which meant I could take it once daily (although some people have reported some very bizarre psychological side-effects). The Combivir is a medication containing 3tc (epivir) and AZT which I would take twice daily. So, 4 pills a day between prophylaxis and antivirals, plus I was addicted to ativan by that time after eating them like candy for 3 months and had to ween myself of them. I replaced that with an SSRI (Paxil in my case) to help with the understandable depression I had. On the plus side, I was negative for syphillis, hepatitis C (which is very common in HIV positive patients), toxoplasmosis (amazing for a person who owns cats). But I wasn't well by any stretch of the imagination.
On my next bloodwork 3 months later, my t-cells had risen to around 60 or so and my viral load was undetectable (meaning that the amount of viral particles in my blood were below the level of detection which was 50 at the level of the assay used).
By the end of the first year, I was still hovering just below 100 on my t-cells even though my viral load remained undetectable and I had not missed or been late with a single dose of my medication and was working full in my old job still and gained most of my weight back. I wasn't very happy with that. Septra makes me itch. That's all. It causes no other side effects but itching and I was tired of taking prophylaxis.
That spurred me to try something a bit more proactive. There is a bio-engineered cancer treatment called Interleukin-2. It is used to treat kidney cancer. It is a product produced by the body as well and causes multiplication of CD4 cells. It was tested in AIDS patients in early 90's but was an abject failure because HIV infects healthy CD4 cells and without anything to stop viral replication, it most likely made matters worse in people uncontrolled HIV (that's my own opinion...at the time it was tried, AIDS very much was a death sentence and it was worth a try in those times). Anyhow, IL-2 is pretty much a orphan drug. It is made by a single company and is EXTREMELY expensive. The drug is currently being tested in Phase III clinical trials for people who have HIV and are on a successful antiviral regimen.
So, I looked into it, and low and behold, my insurance actually covered the stuff. So I sent all the reference materials I could find including the study parameters to my doctor and he wrote me a sheet of prescriptions for IL-2 (including IL-2, sterile water for reconstitution, syringes for injection, and antiemtics for nausea and vomitting). See, IL-2 is a nasty, nasty drug with awful side effects. I taught myself how to mix the drug to proper strength and inject myself with it twice a day for 5 days every 8 weeks. IL-2 courses generally start on Wednesday so by the time you REALLY start to feel like shit that has been in the sun after being squeezed out of a dead carcass that was hit with a Mack truck, it's the weekend and you can lie around pissing and moaning about how fucking awful you feel (and I don't exaggerate). Around the middle of day 3 of a course, I would begin to start feeling extremely fatigued and the fever would start (another very common side-effect of IL-2). By day 5, it was a real challenge to reconsititute and inject myself with another full dose without chickening out (and on a few courses, I did chicken out on the last dose). Fortunately, the side-effects resolve VERY quickly after a course. By about two days after the last shot, you feel pretty much normal. One 5 day course of IL-2 costs around 5000 dollars at retail, but my insurance company paid for it, luckily, even though I was essentially taking it for off-label indications.
To make a long story short (I know, way too late for that), I did that for a year and my t-cell count rose above the threshold of needing prophylaxis. It is not known how well those t-cells function, so going off prophylaxis was something of a risk, but I figured it was worth the risk.
At any rate, that year of IL-2 therapy seemed to be the kick my body needed, because my t-cell count has not only maintained itself, but continued to climb although still hovering in 350 range (which puts me at very low risk of developing an opportunistic infection, in fact, if I had an undetectable viral load and 350 t-cells, I wouldn't even be considered to have AIDS, just HIV).
Today, I got my test results back after 1 year on the once-a-day regimen that I replaced combivir with: truvada. I am still taking Sustiva with it, which makes up the backbone of my triple antiviral therapy (usually a NNRTI and 2 NRTI drugs or a PI and 2 NRTI drugs is a standard regimen). The convenience of once daily dosing of antivirals is marvelous. Try making sure you take a pill every 12 hours for 5 years straight and you'll know that being able to sleep in on Saturday is luxurious. I missed one dose of my medication in all that time although I am not nearly as anal about timing as I originally was. (The first couple of years, I would start getting anxious if I was 10 or 15 minutes late).
I work full time as pharmacy tech now (all that study came in handy for that) and it's been six and a half years since I got my diagnosis of AIDS. I am working on my weight a little, trying to get up to 150lbs (I'm 5'7") and I am within 5 pounds of my goal, although I am taking an anabolic steroid and marinol to get there.
All in all, life is good. Everyday is gravy. My current partner (who is HIV negative) has been with me for 15 years now and we are still going strong.
And that's pretty much my HIV story.
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