TigerMilner Posted January 18, 2014 Report Posted January 18, 2014 I remember that overwhelming feeling. And was like RT's friend, I could not stand the thought of this being inside me, working against, and of infecting others. I wanted meds immediately. Just like with any other potentially fatal and highly infectious disease. I was fortunate to have insurance during all of this. And I had the "donut hole" provision in my coverage that some have mentioned. Once I pass $4500 in meds it pays nothing for the next $4500, then it pays 96%. But don't worry about that too much. I use the AHF pharmacy and they handle all of that. And they never ask me for money. They always tell me how much it would be, but they write it off and my Doctor told me not to worry about it because they are still making a fortune just collecting what the insurance pays. You will not go without meds or without seeing your doctor. Thank you for the encouraging words Tiger. This whole thing has me feeling totally sick. I have no appetite and have been hardly eating. I am praying for the day that things start looking up for me.When it comes to the insurance thing with the meds, I know my insurance will cover SOME of the cost, how much I don't know. I'm scared to know. It's a high deductible plan and not the greatest in the world. I am already working two jobs to make ends meet and pay off some debt, the last thing I need (or can afford) is another big monthly expense. So that's one big fear I have right now. As for my location, I am in northern New Jersey, near New York City. I am sure there are plenty of resources there but I would prefer to find them in my area.
bearbandit Posted January 18, 2014 Report Posted January 18, 2014 There's little I can say that the others haven't said here, and besides the American health system confuses the hell out of me. HIV drugs are no longer something you "survive" any longer. There's sufficient choice of drugs that if you do test positive, if one combination turns out not to suit you, you can switch to another combination. I know a guy who's been on one of his three-a-day for eleven years. Plus a number of the newer drugs are coming out of patent, which means generics will be available at a much lower price. One suggestion: keep a piece of paper by your computer and each time someone mentions how long they've had HIV, make a note of how many years they've lived with it. You'll be surprised at how long some of us have been poz. Put me down for 34 years.
hungry_hole Posted January 18, 2014 Report Posted January 18, 2014 I went for a follow up screening after I tested neg at three weeks from a risky encounter I had... I am freaked out, scared out of my wits and don't know what to do right now. I never wanted HIV or chased it. But now that it seems pretty clear that it's on the horizon for me, I am scared, confused and I have no idea what to do. My health insurance is so-so... Although I live in Canada and have a good drug plan, I can totally identify with the panic that poptronic is feeling. I would probably feel the same way because I don't want and I don't chase HIV. It is in cases like this that I start questioning things around barebacking. Sure it's a lot fun and it's been proven that many men will not stop in spite of the risks. And sure, meds are available and either the state or insurance companies pick up the bill and ultimately drug companies make a killing. They don't care who pays. I can't believe there can't be a safer way of enjoying raw sex without taking so much risks. Also, I'm not sure how old poptronic is because I think age determines certain medical and psychological factors. I think that as I age it would be easier to accept being poz. I would have been devastated if I learned I was poz when I was younger.
VersatileBreeder Posted January 18, 2014 Author Report Posted January 18, 2014 Also, I'm not sure how old poptronic is because I think age determines certain medical and psychological factors. I think that as I age it would be easier to accept being poz. I would have been devastated if I learned I was poz when I was younger. Hungry hole, I am 29.
VersatileBreeder Posted January 18, 2014 Author Report Posted January 18, 2014 bearbandit, thank you for the response. I have to figure out how this system works with the healthcare and HIV meds too. It boggles my mind. It seems like some guys pay a fortune, others pay some co-pay to their insurance, some pay very little and others pay nothing. If you don't mind me asking (and this is something that I always wondered)... How did guys like you who had gotten infected in the very early 80's make it to still talk about it today? I always thought that anyone who got it back then when there was little to no knowledge and treatment for it had basically been handed a death sentence.
PissPigBrooklyn Posted January 18, 2014 Report Posted January 18, 2014 Just hang in there poptronic and remember that it isn't a death sentence any longer. There are many options for you to explore and many more helping agencies set up so that you can find ways to afford your meds if that initial copay is too great. But for what it is worth, I had two instances where my tests came back inconclusive and had to take the blot test. It turned out to be negative so an inconclusive result does not necessarily mean that you will be confirmed poz. The advice given here has been good especially from Piercedcock to take a friend with you when you go for the results. If positive take advantage of the counseling offered to you but make your own decisions. If negative and you plan to continue barebacking it might be a good idea to look at some plans with lower deductibles (although $1500 isn't all that bad.) Keep your friends here informed too.
VersatileBreeder Posted January 18, 2014 Author Report Posted January 18, 2014 Just hang in there poptronic and remember that it isn't a death sentence any longer. There are many options for you to explore and many more helping agencies set up so that you can find ways to afford your meds if that initial copay is too great. But for what it is worth, I had two instances where my tests came back inconclusive and had to take the blot test. It turned out to be negative so an inconclusive result does not necessarily mean that you will be confirmed poz. The advice given here has been good especially from Piercedcock to take a friend with you when you go for the results. If positive take advantage of the counseling offered to you but make your own decisions. If negative and you plan to continue barebacking it might be a good idea to look at some plans with lower deductibles (although $1500 isn't all that bad.) Keep your friends here informed too. PissPigBrooklyn, thank you for the encouragement. It would be nothing short of a miracle if this Western Blot came back negative, but I am not very hopeful of that. I will go back for the results fully expecting them to be poz. Problem is, I don't have many gay friends and I don't really have anyone to come with me. But it will be fine. I will be fine on my own. All I am hoping for at this point is that whatever strain I have is a treatable one and not a drug resistant or problematic one. I also hope that everything will work out with getting the meds and that it doesn't cost me an arm and a leg. I am kinda broke right now, making ends meet and paying off debts so the last thing I need is are med expenses that will kill me financially.
bearbandit Posted January 18, 2014 Report Posted January 18, 2014 If you don't mind me asking (and this is something that I always wondered)... How did guys like you who had gotten infected in the very early 80's make it to still talk about it today? I always thought that anyone who got it back then when there was little to no knowledge and treatment for it had basically been handed a death sentence. I never talk about something I'm not prepared to discuss further... The basic answer is sheer fucking luck. I tested in 1987 and started low dose AZT monotherapy in 89. After that it was a question of lurching from drug to drug. I went on the nevirapine trial because it was the only way to get 3TC, which meant that at least I'd be taking one extra drug. I had a year or so in the nineties of a double figure CD4 count. That changed when the protease inhibitors started, even though they were prescribed in massive overdoses (how I got diabetes and lost my libido for ten or so years: high dose ritonavir). When my partner died in 2007 I thought that no adherence was safer than bad adherence so went on a drug holiday for seven months. I went from my highest ever CD4 (888) to about 200 in that time. That was about the end of the time when they thought treatment holidays were possible - they aren't. But as others have said, today's drugs are the safest, most effective ever. Thinking back through the people I know I can think of only one guy I know who's had HIV longer than me - again he remembered his seroconversion illness and because of other issues they had frozen blood samples and one from 1979 tested positive.
VersatileBreeder Posted January 18, 2014 Author Report Posted January 18, 2014 I never talk about something I'm not prepared to discuss further... The basic answer is sheer fucking luck. I tested in 1987 and started low dose AZT monotherapy in 89. After that it was a question of lurching from drug to drug. I went on the nevirapine trial because it was the only way to get 3TC, which meant that at least I'd be taking one extra drug. I had a year or so in the nineties of a double figure CD4 count. That changed when the protease inhibitors started, even though they were prescribed in massive overdoses (how I got diabetes and lost my libido for ten or so years: high dose ritonavir). When my partner died in 2007 I thought that no adherence was safer than bad adherence so went on a drug holiday for seven months. I went from my highest ever CD4 (888) to about 200 in that time. That was about the end of the time when they thought treatment holidays were possible - they aren't. But as others have said, today's drugs are the safest, most effective ever. Thinking back through the people I know I can think of only one guy I know who's had HIV longer than me - again he remembered his seroconversion illness and because of other issues they had frozen blood samples and one from 1979 tested positive. Well, bearbandit, you definitely sound like one of the lucky ones. That's not to say that it doesn't sound like you have had some definite struggles along the way, but 34 years later, you're still here. I hope that in 34 years (I'm 29 now), I am still around and healthy. With the right mindset and medications, I should be.
VersatileBreeder Posted January 18, 2014 Author Report Posted January 18, 2014 You don't have to go on meds right away, but I'm guessing you'll be like my best friend and hate the concept that HIV is in your body and want to battle it from day one - but if you can't afford it and you wait a year or two to go on meds chances are that won't be a problem. You just need to make sure you go on meds before your t-cells drop below 300 or 350. The worst case scenario is that you move across the river into New York City where coverage for HIV-related issues is really good. That's not a horrible prospect. So again - take a deep breath - it'll all work out and you'll be fine. RawTop, thank you. And yeah, you got that right, I can't stand the thought of this virus running wild in my system. So I am gonna hit it hard and as fast as possible. I don't want to have my immune system start to fall apart before deciding medication. Paying for the medication at first looks like it would be a lot of money but the deductible is the biggest hit ($1,500), though after that it should be fine ($70 copay for a month of Atripla or Truvada, and I know those are the expensive ones). In September, I am going to be starting a new job that has phenomenal health insurance, along with a prescription reimbursement plan that reimburses out of pocket costs. If I'm correct, you cannot be denied health insurance in the US for pre-existing conditions, right?
fillmyholeftl Posted January 18, 2014 Report Posted January 18, 2014 Correct, You cannot be denied for pre-existing especially HIV... There are some good resources in Northern NJ as well as NYC. Look up "Friends for Life", also, NJ Buddies. I lived in NNJ up til 3 yrs ago. GOOD LUCK> I had a great infectious Disease specialist if you want to PM me. RawTop, thank you. And yeah, you got that right, I can't stand the thought of this virus running wild in my system. So I am gonna hit it hard and as fast as possible. I don't want to have my immune system start to fall apart before deciding medication. Paying for the medication at first looks like it would be a lot of money but the deductible is the biggest hit ($1,500), though after that it should be fine ($70 copay for a month of Atripla or Truvada, and I know those are the expensive ones). In September, I am going to be starting a new job that has phenomenal health insurance, along with a prescription reimbursement plan that reimburses out of pocket costs. If I'm correct, you cannot be denied health insurance in the US for pre-existing conditions, right?
wood Posted January 21, 2014 Report Posted January 21, 2014 Thank you for the encouraging words Tiger. This whole thing has me feeling totally sick. I have no appetite and have been hardly eating. I am praying for the day that things start looking up for me.When it comes to the insurance thing with the meds, I know my insurance will cover SOME of the cost, how much I don't know. I'm scared to know. It's a high deductible plan and not the greatest in the world. I am already working two jobs to make ends meet and pay off some debt, the last thing I need (or can afford) is another big monthly expense. So that's one big fear I have right now. As for my location, I am in northern New Jersey, near New York City. I am sure there are plenty of resources there but I would prefer to find them in my area. Almost all the drug companies have assistance programs that will defray most if not all the cost of medication. Tigers advice is really good. Stop trying to go about this alone, and look for resources in your area. If you are near NYC, I am 100% sure Newark has some kind of health center dedicated to HIV. You will be fine. It will take a while but you will be fine.
VersatileBreeder Posted January 22, 2014 Author Report Posted January 22, 2014 Well, the Planned Parenthood test results came back and they were posted to the online patient portal system that they now have available. It's no surprise that the test results were positive. So, that settles that. I am HIV positive. I need to schedule a date to go in and discuss the results with them. I'll keep you guys posted on what's next. Thank you so much to everyone who has been commenting on this thread and helping to calm me down and offer some advice as to what to do next. 1
PissPigBrooklyn Posted January 22, 2014 Report Posted January 22, 2014 Hang in there! You have friends! Remember that and keep us informed as to how it is going!
wood Posted January 22, 2014 Report Posted January 22, 2014 Well, the Planned Parenthood test results came back and they were posted to the online patient portal system that they now have available. It's no surprise that the test results were positive. So, that settles that. I am HIV positive. I need to schedule a date to go in and discuss the results with them. I'll keep you guys posted on what's next. Thank you so much to everyone who has been commenting on this thread and helping to calm me down and offer some advice as to what to do next. Hang in there dude, everything is gonna be fine. Its a bump in the road, but you are gonna have a normal happy life. As long as you don't let it, HIV wont control you, you will control HIV. Dont even bother with a GP for HIV advice, you said you are close to NYC in northern jersey, so there should be a lot of options for you. A quick search yielded these results. http://www.smithcenternj.org/ http://www.newarkema.org/ one quick hint, go for the places that say ".org" they are non profit, and likely to be free or little cost. Stay away from planned parenthood for this also just because many of the centers dont have as much experience in HIV. Im a big proponent of starting treatment early so I would go see someone as soon as possible. its not a MUST, but current research suggests the quicker you start treatment the better, and the less damage the virus does to your bosy. Any other questions or concerns just ask!
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