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Honest discussion about poz health


makingwords

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More on Isentriss/raltegravir: A recent study showed that it causes muscle pain in about 40% of people taking it. Makes me wonder how much of my rotator cuff injury is the swollen tendons themselves and how much is raltegravir joining the party. I'm doing the physio exercises appropriate for the injury site and where I feel the pain and frankly the exercises are a doddle, which I didn't expect when I started them. Could be that the rotator cuff injury isn't as serious as I thought and I can get back to the weights sooner :-)

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Good work Josh - never, ever, forget that the meds are there to work for you, not the other way round. And if the combination doesn't work for you, as a newbie (not meant to be insulting: I've been a prescription drug whore since AZT monotherapy!), you've got a hell of a range of drugs to choose from. Just make sure that you have your bloods monitored at least every three months.

btw - sorry to hear about the problems you've had with your blog: FIGHT! Way back when Compuserve tried to close my and John's page down, the problem being a photo of me that showed too much, we fought back and won there. Not so easy when you've got lots of little attackers, I know, but I've avoided getting bashed by telling the drunken idiots that they really, really, did not want contact with my blood. People bully because they're scared: turn it back on them!

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My Immunologist recommended Isentriss for it's ability to lower the VL to undetectable really fast. And it did in 30 days. I originally was to drop it at that point. I did for the next 30 days, and my viral load came back up to a mere 301, but I wanted it undetectable. I chose to go back on it. I want to beat the fuck out of this thing. I'm doing new bloodwork tommorrow, and I am hopeful that I will still be undetectable. I am really hoping at this point that the Complera can hold it in check. I will let you guys know when the numbers come back in .

Saw my Immunologist today and two months after dropping the Issentris from my daily regime, I am happy to report I am still undetectable! The 'one pill a day' Complera is holding me there. CD4 cells are 522 and 42% and VL is Undetectable. I've hestitated to say anything for fear of jinxing it, but I feel like my seroconversion is finally complete. It's been nearly a month since I felt the fatigue lift, the muscle spasms stopped, my thinking cleared, nausea went away and all the weird little side effects went away as if a storm had passed. I feel like myself again. The unexplained anemia that kept getting worse each month as been reversed. I am still slightly anemic, which is a typical HIV reaction, but no longer are the doctors thinking I might have luekemia or lupus or vasculitis.

I've been back to the gym regularly this month, something I love to do but just hadn't had the strength for months, so the endorphins have been good for my mood as well. I remember reading somewhere that the body's adaptation to the meds can take up to a year. I was overwhelmed by the thought of that. But it seems it took nine months in my case. I can tell it is done. I can feel it. I am vampire.

I want to thank you guys for putting up with my rants and my whiny bitchy little attitude. I've never been a sickly person so it was difficult for me to accept. The process has been hard and is not easy to talk about. I even quit talking to most of my closest friends about it because it just got to be too much to talk about. Having this forum helped me to get it off my chest, vent some anger, calm some fears, and most importantly, realize I can do this.

Oh yeah, this was weird. I "came out" to my doctor today, too. Not that he didn't know I am gay. He is also gay (and smokin hot!) so that was one of the first things I liked about him. But I came out to him that I am a bareback whore! lol. I told him about my blog and that I don't plan to stop having sex, raw sex, and that taking the amateur porn thing to next level was still a goal for me. I have an innocent, kind of boyish appeal that is kind of "all american", but is very deceptive. It was somewhat surprising to him, my honesty that is. But he told me "you certainly are not the first person to tell me that"! Then he set me up with some "just in case" prescriptions because I told him I have group situation coming up next month that I am looking forward to and I want to make sure I don't give anybody anything and I don't want to bring anything new home with me. It was an awesome conversation. Every gay man should have a gay doctor. It is really hard to talk about barebacking with a doctor. My first Immunologist asked me "Do you use condoms 100% of the time?" I responded "If I did we wouldn't be having this conversation would we?" I knew she was not going to last long. I like that my HIV Specialist is someone I'd like to bend over and spread my cheeks for some day. Oh wait, I have. Anal pap smears, an annual treat.

But really, thanks guys.

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  • 2 months later...

Well it's been three months since I have been on only the one pill a day Complera regime. I saw the Immunologist last week and my CD4 cells are up to 664 and 46%. I was somewhat disturbed that my undetectable viral load has risen to 25. Doc says it is still undetectable and that undetectable used to mean less than 400, then less than 200, 100, 50 and now 20. He says not to worry. But I do. I want to kill this thing. 25 means some of it is still replicating, right? Am I lying if I say I'm undetectable?

Btw, all other numbers were perfect. No anemia. He was very encouraged and said it means the medicine is working.

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There are so many tests out there now, with varying degrees of accuracy, that undetectable is going to have to carry the rider (according to test manufactured by xxx). The important theing to remember about VL tests is that their results are expressed logarithmically, so VL1000 is only twice VL100, not ten times as you'd expect. At the undetectable end we're talking pretty small numbers and most doctor don't seem to be perturbed until VL reaches 50,000+. I'm not a doctor, but at that level I'd say resistance tests and possible a change of combination are in order (as well as checking the patient's adherence) at that level.

I'd be pleased with those numbers (especially the %). Incidentally my hospital has just changed their VL testing to a lab which returns >70 as undetectable. The lower you want to go the more it's going to cost you...

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