Is HIV still a death sentence??

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    Aug 23, 2007 4:36 PM GMT
    I thought I'd start a topic to see everyone's thoughts and perceptions on HIV today. Do you see it as a death sentence, or something you can live with well past retirement? It seems that now people can get infected and not worry about it killing them like it used to. I'm not positive myself, but I am involved with HIV research at school so I've met quite a few people who have been positive for 20+ years and are currently asymptomatic. I know there are different strands that affect people in different ways, some stay dormant longer than others, blah blah blah. But is it as dangerous as it was twenty years ago??
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    Aug 23, 2007 5:08 PM GMT
    It certainly is not as deadly as immediately deadly as it was 20 years ago; however, I hate to hear people call it a manageable or cronic disease.

    Freinds of mine who still take multiple pills daily and are run through tests monthly and/or quarterly don't think of it as simply manageable. It interrupts their life daily - like when you can't sleep, or your feet or hands don't work/grip properly from neuropathy, or you diarreah all day and can't go to work, or when you switch jobs and suddenly can't get insurance through your new workplace, or when you get a raise at your job and you suddenly earn too much for ADAP and your personal medical costs go up 5,000%.

    There are numerous ways it affects and effects individuals' lives daily. I'm glad not to have to "manage" any of that. That's why I use condoms.

    (stepping down off of soapbox now; thank you)

    Obviously you hit a nerve with me.
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    Aug 23, 2007 5:15 PM GMT
    don't let all the "good news" about new and more effective treatments fool you or anyone else. Pharmaceutical treatmetns are still "touch and go"... what works for some has no effect for others.

    I used to work with Pharmaceutical clients for many years working on marketing platforms for their new "innovations". I left that field several years ago because it wasn't satisfying. IN the end, the drug mutates and adapts to the new medications.

    Pharmaceuticals have given SOME people a better life (or at least extended it), but with the "relaxation" of safe sex practices, new strains and "sub-super" strains are starting to emerge. But by no means are the new pharmaceuticals fool-proof. and many patients have to constantly change medications to try to get better effectiveness - with all the side effects that that brings.

    But by no means does the effectiveness of these drugs mean that this disease is not life-threatening or deadly. In the end, there is still no "cure" for this disease.

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    Aug 23, 2007 5:21 PM GMT
    No, not a death sentence literally, but sometimes it feels like it might as well be. I am in a wonderful relationship now (this one may be the keeper!), but for many years prior to that, I faced rejection after rejection. So many people, even on this site, proclaim right up front in their profile, "disease free and you must be too." It still creeps people out more than you might realize - either that or guys just want the option of unprotected sex somewhere down the road once things become serious.

    I don't perceive that guys view me as The Grim Reaper or anything, but that I am somehow damaged goods. Odd that, since I am in better shape than guys half my age, and have never felt better in my life. I have been positive for ten years and never had so much as a single symptom the whole time. My doctor thinks I am some sort of freak of nature, because I also take no meds. I think drugs are for sick people, and if I ever get sick, I will start taking them.

    I live my life as though I will die at 90 or so, just like anyone else. Perhaps I have my priorities in a little better order than they might have been otherwise, but that's the only real change in me as a person.
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    Aug 23, 2007 7:34 PM GMT
    My kinda man, jarhead! Its MIND over MATTER...
    Half the guys on the football team couldn't believe I had asthma.(respiratory disease?)
    I cant imagine being HIV+ though... but I've hated the idea of assissted living since I was a little kid on an inhaler. Also, I mean NO OFFENSE to any and all others who are not like-minded.

    I don't wanna be flammed...=P
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    Aug 23, 2007 10:59 PM GMT
    Agree with jc and growingmusc on theis point. While the virus may not be seen by many as the automatic death sentence it was once perceived as being, for those taking meds, life isn't always the picnic that many of the pharma ads would like to depict. Even if taking ony a few pills a day, the side effects are pretty ugly. And sadly, there is still no "cure". Until there is, we cannot be content with the status quo. We have already lost too many great souls.
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    Aug 23, 2007 11:19 PM GMT
    It probably is if you come from poor develop country. Most those people have no mean to buy expensive drug or whatever you call it. (that if it available at all).

    HIV is one word I am so scare off. I growth up in US in the 80'S during the height of AIDS. I dont care if it death sentence or not , I just not gonna do anything to risk my life.

    Greg Louganis is still around, isnt it?. So I guess probably it no longer life treatening.

  • dfrourke

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    Aug 24, 2007 7:55 PM GMT is a chronic condition...and most of us with the disease are likely to suffer long term affects from having it...

    ...however, many people with HIV are actually dying of other more "mainstream" things like cancer, heart disease, being hit by a bus...

    ...when I saw my doctor, I was told I would live my mom's side lives into their 90''s side lives through 50's...hopefully I'll be somewhere in between!

    - David
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    Aug 24, 2007 8:10 PM GMT
    dfrourke said: "...when I saw my doctor, I was told I would live my mom's side lives into their 90''s side lives through 50's...hopefully I'll be somewhere in between!..."

    Only if some Italian guy whose nickname on RJ is fastprof doesn't knock you off before...just because... :-)

    David is so damn healthy, and is such a stud athlete, he will outlive Methusalah...

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    Nov 26, 2007 2:43 PM GMT
    It is really more of a social stigma than a death sentance in the developed world.

    There are other factors involved in HIV/AIDS susceptibility. Methamphetamine and cocaine use only seem to make the infection more refractory to treatment and speeds up the seroconversion rate in the studies I have read. There are known genetic factors that improve suvivability and resiliency to the infection such as the CCR5-delta32 allele, or the newly discovered one for increased production of the VIRIP protein, et al. Plus there is an ever increasing array of antiviral drugs hitting the market. Reverse transcriptase inhibitors like AZT were the first, followed by the protease inhibitors. The combo was considered revolutionary when first approved. Mortality rates started dropping off. But now there are entirely new classes of drugs such as Integrase inhibitors, and CCR5 antagonists. The means that physicians have of inhibiting the virus are increasing.

    Another drug of interest is low dose naltrexone. It is not an antiviral agent specifically, but rather an immunomodulator that not only boosts T cell counts, but it reduces inflammation and it seems to counteract lipodystrophy caused by the HAART coctail. Depakote is showing promise as an agent to treat the the onset of AIDS dementia. All in all, people with HIV have a chance at maintaining a normal healthy life span until the cure is found. This is a virus we are talking about here, and we are in the 21st century now. We aren't completely powerless against this thing.

    MRSA and tuberculosis are probably even more dreadful and menacing foes right now, and people with HIV need to be extremely careful to avoid these infections. No one has developed a new anti-tuberculosis drug in almost 40 years or more. It is coming back, stronger than ever, and you only need to breathe to catch it. You only need a scratch to catch MRSA.

    But complacency towards ANY infectious disease is something that humanity can ill afford.
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    Jan 06, 2008 5:43 AM GMT
    Some people cant tolerate it. I dont understand why but I lived almost 10 years without medication. The only reason I got on was because it is one problem after another when you body can no longer defend itself. One infection after another. It has been 17 years now and I attribute it to Atripla. I went from AIDS to undetectable extremely fast. Went back to work full time, hit the gym a little too many times a week and have energy for more. My friend that is a healthcare worker got mad at me for saying it isnt a death sentence anymore but my doctor says different and that I will live a long, long life. You never know though. Stuff happens.

    I do totally agree with it being more of a different kind of death sentence because now I am basically a leper. I dont blame people for feeling that way. I was freaked out if someone with HIV even kissed me on the cheek before I had it. Nothing worse than having one guy after another walk away. Now, even if I like someone and vice versa, the status thing kills it 99% of the time. I am actually blown away if someone says it doesnt bother them.
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    Jan 06, 2008 5:50 AM GMT
    This was in the New York Times today, and I think it's an emerging issue among long-term HIV treatment that many people don't know much about...
    AIDS Patients Face Downside of Living Longer
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    Jul 14, 2008 7:46 AM GMT
    I remember when I was a in the 4th grade. I learned about AIDS. I didn't completely grasp the concept but I knew it was something serious.

    All I knew emmediately that it was like cancer except you cant cure it but treat it.

    I did a science project on it, the only one to not do one based on a potato generating electricity, and I learned a lot.

    I thought it was nuts that the disease can lay dormant in your body for your entire life.

    Science is interesting
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    Jul 14, 2008 12:55 PM GMT
    HIV can be a death sentence if the person refuses to take the anti-HIV meds or cannot adhere to the drug regime and develops resistance to the drugs.

    Fortuntely there are new classes of drugs that give doctors more options for those that have become drug resistant.

    What most people do not realize about HIV is that it seems to increase your risk for cancer and heart attacks. I have blood work taken every month which tracks my kidney and liver enzymes, as well my doctor measures my weight. I am on medication for cholesterol, blood pressure and tryglycerides.
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    Jul 14, 2008 1:13 PM GMT
    my mom beats the fear of aids into my head daily- when i first came out i was told of how her cousin Andy was beloved by the whole family, and was embraced by everyone when he came out... then he went to nyc for film school, got aids, and died in a year quite horrifically- this when i was a toddler. then, i was invited to watch Philadelphia with my mom and dad one night- we all cried together and mom made me swear i'd never put her through that. she's a nurse practitioner, so i hear stories almost weekly from her of the young men that she has to test and then give the news that they're positive. being an empathetic and imaginative person, its easy to put myself in that position, mentally, and wonder how i'd react if it were me in those shoes.

    the growing danger these days is that the kids of my generation don't remember the holocaust of the 80's, and to us, aids has become something you really don't want, and that you know will kill you EVENTUALLY... but that just isn't as scary as it used to be. so many don't use condoms, or require their partner to get tested before sleeping with them. SHOW ME PAPERWORK. no, it doesn't kill quickly as it used to- but i should think that walking around feeling like a time bomb would be worse, because it WILL kill a guy in the end, its just a matter of time- and its not a pretty way to go in the least. i can't stand when ppl try to lessen its seriousness with quoting cases of people who have had it for tens of years- its still ultimately a deadly incurable disease, and lulling people into a false sense of comfort or acceptance of having it is not constructive at all. not to mention, from what i've read from hiv+ guys in here, life can be pretty miserable with the cocktails of heavy duty meds needed to keep the disease at bay. and then there's the social alienation one experiences merely for having it. i have so much respect for the guys in here who live with it daily- its a burden i never want to bear and wouldn't wish on anyone.
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    Jul 14, 2008 3:28 PM GMT
    Well czarodziej I agree it can be a burden. I honestly don't think there has been a day since September 1st, 1995 that I have not thought about it (BTW today is the 13th anniversary of my sickness starting that led to me getting tested). I am glad you have parents that care about you enough to ensure that you are concerned about getting infected.

    I am not sure I agree that it will eventually kill me. I guess I am an optimist, and my health is very good (I just had my check-up last week). A matter of fact I am probably in better shape now then when I was your age.

    The medications can be troublesome, but fortunately they are getting better in terms of side effects and ease of consumption. I used to take protease inhibitors that had irritating side effects (loss of body hair, itchiness, and fatigue) and were difficult to take (on an empty stomach twice a day). The drug I replaced them with (Sustiva) I only take once a day in pill form.

    I would never make light of the HIV disease, it has a lot of insidious impacts that are not obvious. For example, lowering of sex drive, depression, heart disease, inflammation of the muscles and greatly increased risk of some cancers. Fortunately though it is not quite the death sentence it was in the 1980s.

    For those young people on RJ who are concerned about HIV, I would recommend thinking very carefully about what sexual practices you want to engage in, how much risk you want to take (e.g. protected oral vs. unprotected), whether engaging in casual sex is worth it, and what impact alcohol and drug consumption is having on your behaviour. Also it does not hurt to get tested frequently. It helps to remind a person that there is a potentially deadly disease out there that requires vigilance.

    Finally also think about your mental and emotional state of mind. I know I have said this before, but it needs to be reiterated. Loneliness and depression can lead one into behaviour that increases one's risk of getting infected. If anyone on RJ wonders what my life living with HIV is like, send me an e-mail I would be happy to share my experiences.
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    Jul 14, 2008 3:57 PM GMT
    HIV is likely managable in many cases. If if it does not kill, the stigma, cost for yourself and society, and the hassle (in taking many meds) is high. Appears many, if not most gay people have lost this concept. The promicuous sex is worse now than in the early 1980's. Sex parties abound. Anal intercourse is just about a requirement. Barebacking has come back as the norm. Swallowing is back. Because I do not have intercourse (I like body contact, wrestling, JO, etc.), I can not have an relationship and have been called a prude, or even worse, straight. What is going on? People appear to act it is the end of the world is coming and throwing responsibility and long term thought out of the window. A new explosion of HIV cases is already starting to emerge in the homosexual community.

    If irresponsible behavior launches super viruses or even a new disease, it will be even harder for society to accept homosexuality and to do research and treatment. People forget how hard it was during the Reagan years.

    If you care about yourself, and the gay community, avoid dangerous self serving behavior. It is not worth the few minutes of pleasure, might as well smoke crack, at least you will not worry what disease you caught. We actually looked good in the 1990's. Do not throw it away.

    Little John
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    Jul 14, 2008 4:14 PM GMT
    Little John, the gay lifestyle has changed if anal sex has become that popular. It was never a show-stopper when I was single. As for swallowing, that is definitely a bad idea unless you are absolutely sure the guy is HIV-.

    I think it is an unfortunate side-effect of the medical advances in treating HIV. When I first came out in 1986 it was not uncommon to see people in the advance stages of AIDS in Toronto. I remember going to an AIDS hospice in 1989 to visit my bf's close friend who was dying. Once you experience something like that you never take HIV lightly.