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Author Topic: HIV meds, and the fallacy of "no big deal"  (Read 19173 times)

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Offline Dachshund

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #50 on: December 04, 2010, 04:01:04 PM »
Well my battery is running down and there's no electricity here.
Will look forward to reading this thread.
Let's here the argments:    listening to Doctors, HIV specialists, research scientists, etc. say there's lots of optimism.  That leads to AIDS denialism and new infections.  Let's here the arguments.  They could be intellectual or researched based. I don't care.  Put them out there and we'll debate.

It doesn't matter if I don't practice safe sex. Even if I do get infected I can just take a pill.

Offline woodshere

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #51 on: December 04, 2010, 04:20:24 PM »
Quote
It's great to have these forums and access to people with knowledge that's based on experience that one can turn to when those issues arise. But, sheesh, couldn't those issues be addressed when they arise as opposed to before?

So until then we look at the world through rose colored glasses, singing happy songs and giving the impression all is well.  Have you ever thought that this mentality might be a contributing factor that its ok not to worry about HIV, lead guys to bareback any ass or cock that comes along, because all they hear from guys who have "it" is "It's no big deal, when I need to I will start taking a pill a day and everything will be fine".  Please understand that I could be the poster boy for the "HIV: It's No Big Deal" ad campaign.  I am  an excellent example of how HIV in the big scheme of things has had very little impact on my life at this point.  I have made a few adjustments here and there, but other than that my life is not much different than before testing positive.  I could be out there saying it's no big deal, but i don't because i know that it gives a false sense of security.  Things change in a second as they have done with me just this past week as my my financial security and how I pay for my future health care has gone to hell in a hand basket.  So you go on promoting how all is well and we'll talk about problems when they arise.  I am going to side with those who are being realistic in how HIV effects our lives.
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline ElZorro

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #52 on: December 04, 2010, 04:37:45 PM »
So until then we look at the world through rose colored glasses, singing happy songs and giving the impression all is well.  Have you ever thought that this mentality might be a contributing factor that its ok not to worry about HIV, lead guys to bareback any ass or cock that comes along, because all they hear from guys who have "it" is "It's no big deal, when I need to I will start taking a pill a day and everything will be fine".  Please understand that I could be the poster boy for the "HIV: It's No Big Deal" ad campaign.  I am  an excellent example of how HIV in the big scheme of things has had very little impact on my life at this point.  I have made a few adjustments here and there, but other than that my life is not much different than before testing positive.  I could be out there saying it's no big deal, but i don't because i know that it gives a false sense of security.  Things change in a second as they have done with me just this past week as my my financial security and how I pay for my future health care has gone to hell in a hand basket.  So you go on promoting how all is well and we'll talk about problems when they arise.  I am going to side with those who are being realistic in how HIV effects our lives.

Excellent points, Wood, and I don't disagree. I was very concerned that no one I was around on Wednesday seemd to know nor acknowledged that it was World AIDS Day.

Do you care to comment on the rationale, though, for people quashing any optimism about the research that is ongoing, or just focus on those two particular sentences of my post? Is it possible to achieve a balance? It's a serious question.

I've never said HIV was no big deal. It's a HUGE deal to me personally.

Offline Miss Philicia

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #53 on: December 04, 2010, 04:41:10 PM »

Do you care to comment on the rationale, though, for people quashing any optimism about the research that is ongoing, or just focus on those two particular sentences of my post? Is it possible to achieve a balance? It's a serious question.

I'm not sure if people quash optimism on research, they just try and put it in context for someone new to the disease, such as yourself, certainly in light of your first post on this board that stated "I still spend countless hours every week typing "HIV Cure 2010" into the Google search box hoping to come across a miracle."

Fixating on a cure to that extent is, to put it simply, not healthy.

ps: sorry to single out an old post like this, but it illustrates something and it's prevalent among (some, not all) posters in the Research section.  Additionally, if this phenomena is pointed out we're accused of being "negative" instead of offering constructive criticism on the intersection of acute anxiety and someone's new(ish) diagnosis.
« Last Edit: December 04, 2010, 04:44:39 PM by Miss Philicia »
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Offline Andy Velez

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #54 on: December 04, 2010, 04:47:24 PM »


"Guns" are unnecessary to have a conversation. This thread is dealing with a serious and complex subject.

If you have something to add to the dialogue, please do it without attacking, snarking and otherwise snotnosing others. Otherwise just don't participate.

I don't want to see a worthy subject shut down just because people can't behave decently with each other. Thanks for your cooperation.
Andy Velez

Offline ElZorro

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #55 on: December 04, 2010, 05:02:10 PM »
I'm not sure if people quash optimism on research, they just try and put it in context for someone new to the disease, such as yourself, certainly in light of your first post on this board that stated "I still spend countless hours every week typing "HIV Cure 2010" into the Google search box hoping to come across a miracle."

Fixating on a cure to that extent is, to put it simply, not healthy.

ps: sorry to single out an old post like this, but it illustrates something and it's prevalent among (some, not all) posters in the Research section. 

No harm, no foul, Miss P. I don't take that personally. In fact, I remember that post and the advice I was given at the time was spot on: namely, time is a great healer. And, now, although I do still try to stay abreast of what's going on with research, I don't obssess as much as I used to. I still remain hopeful, though.

I respect the experiences of those who have been through the worst of this and am (selfishly) relieved that I wasn't one of them; I'm not sure I would have had the strength to survive what many of you have survived. I was on active duty at the height of AIDS. I've never been surrounded by friends that I loved dropping dead around me and having to deal with the helplessness that must go with such experiences. And, my heart goes out to everyone who has gone through that.

However, I also hope that I never lose the hope and optimism that I have today. I spend a lot of time reading the original posts of the members out here; it helps to provide some perspective about these virtual people. It's interesting (?) to see how their optimism has changed over time and the tone of their posts. You used to be an absolute sweetheart!  ;)  (and I'm not slamming you, either, just noting that the tone of your posts have changed over time and I'm sure that's probably got a lot to do with the battles you've had to fight)

This particular poster seems to be a very pragmatic, educated person, but, years ago on this forum, was not accused of wearing rose colored glasses for being optimistic:

Compared to 10-25 years ago look where we are.  Perhaps I am a little optimistic, but I have no reason to think that my life will be cut short due to HIV.  Sure we have side effects to meds and there is still much to learn, but can't that be said from women who have breast cancer, those who suffer kidney disorders, or have heart conditions.  I would say many of them could say the same thing about their meds and about the changes that have occurred in their lives.  Perhaps the biggest thing holding us back from calling this a manageable illness is the stigma that is attached especially in middle America.





Offline woodshere

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #56 on: December 04, 2010, 05:11:13 PM »
Excellent points, Wood, and I don't disagree. I was very concerned that no one I was around on Wednesday seemed to know nor acknowledged that it was World AIDS Day.
Do you care to comment on the rationale, though, for people quashing any optimism about the research that is ongoing, or just focus on those two particular sentences of my post? Is it possible to achieve a balance? It's a serious question.
I've never said HIV was no big deal. It's a HUGE deal to me personally.

Well, miss p probably did a much better job than I, but I can't resist an opportunity to add my 2 cents worth, especially when asked...:) I really don't view pointing out fact as quashing.  I just read the OP's first post and no where in it was there anything to quash hope, it was pure fact.  For some reason a few people view that as being negative.  There is nothing wrong with being optimistic, but do not use that to enable others to view HIV without regards to the reality.  I don't believe I said you had said HIV was no big deal, but it is the jest of this thread.  I must be honest the part of not dealing with problems until they arise really bothered me.  That thinking is prevalent throughout all aspects of society.  In regards to HIV, "Sure I'll fuck raw if I end up infected I'll deal with it then."
Quote
Compared to 10-25 years ago look where we are.  Perhaps I am a little optimistic, but I have no reason to think that my life will be cut short due to HIV.  Sure we have side effects to meds and there is still much to learn, but can't that be said from women who have breast cancer, those who suffer kidney disorders, or have heart conditions.  I would say many of them could say the same thing about their meds and about the changes that have occurred in their lives.  Perhaps the biggest thing holding us back from calling this a manageable illness is the stigma that is attached especially in middle America.
HMMMM, now I know how politicians feel.  And yes I wasn't accused of wearing rose colored  partially because the discussion was more civil.   I had not just joined the forums recently and start telling everyone who had been poz they weren't welcome in a thread i started or calling them the voice of doom and gloom (no I am not saying you have, but many with your thinking have).  I approached things from the point of trying to understand all aspects of an issue and not push mine as it is the way is should be at the time I joined 2006/7. I have no doubt things I said then may not hold true today.  I can only write about the way I feel now.  I am optimistic as I was then.  Then, as now  I do not gloss over the fact that there are side effects to all aspects of this virus.  I am flawed after living with HIV for going on 5 years I have changed somewhat, I appreciate and am flattered you dug this up for me and pointing out that my thinking as a newbie has somewhat changed over the past 4 1/2 yrs.

edited to make more sense...at least to me...:)
« Last Edit: December 04, 2010, 09:54:25 PM by woodshere »
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline Miss Philicia

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #57 on: December 04, 2010, 05:16:23 PM »
It's interesting (?) to see how their optimism has changed over time and the tone of their posts. You used to be an absolute sweetheart!  ;)  (and I'm not slamming you, either, just noting that the tone of your posts have changed over time and I'm sure that's probably got a lot to do with the battles you've had to fight)

Naw, actually -- in fact my "HIV life" has been much, MUCH, easier the past several years.  Need I remind you that I have 1300 t-cells and a % of 50 my dear, not to mention that I'm not at all closeted with my HIV diagnosis?  That is the sign of The Chosen One, singled out by God to deliver The Good News of HAART and all that is touchy-feely goodness of modern HIV treatment.  All else is useless psychobabble from junior league wannabe psychologists.

Any frustration you sense doesn't have much to do with where I find myself, it's more frustration from some repeated strains of thought that seem to predominate this forum, along with the sprinkling of repeated sock puppets and trolls which appear from time to time, but I digress.  Everything else I blame on the daily Nastyô Enema that Matty gives me when I wake up each morning.
"Iíve slept with enough men to know that Iím not gay"

Offline ElZorro

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #58 on: December 04, 2010, 05:17:42 PM »
I hope you realize I wasn't trying to "call you out", Woody. (Which is why I didn't post the link in the quote)

What you wrote 5 years ago sums up exactly how I and several others out here feel right now, today. I would prefer that no one else ever contract HIV and I don't appreciate it when it's compared to diabetes in that it's manageable; I would take diabete in a heartbeat over HIV.  But, I'd also take HIV over the brain cancer that killed my aunt a few years ago.

However, I hope that in 5 years I am able to still feel this way. If I'm not then it does mean that all of the information I'm being provided by my ID staff is absolute BS.

Offline ElZorro

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #59 on: December 04, 2010, 05:26:28 PM »
...not to mention that I'm not at all closeted with my HIV diagnosis...

I find myself thinking about that a lot. As someone alluded to in this or another post, if it was cancer, it might be easier (for some; me included) to be open about it. I would think that would make acceptance and dealing with it "easier". I'm sure that, on some subconscious level, I'm a bit worried about what would happen in my life if my status came out. I'd also be willing to bet a $1 against a donut that such a concern is relatively common. So, I guess in one respect, having hope that things can and will get better make the prospects of keeping this secret much brighter. Almost rosy;)

Offline woodshere

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #60 on: December 04, 2010, 05:33:30 PM »
I hope you realize I wasn't trying to "call you out", Woody. (Which is why I didn't post the link in the quote)
What you wrote 5 years ago sums up exactly how I and several others out here feel right now, today. I would prefer that no one else ever contract HIV and I don't appreciate it when it's compared to diabetes in that it's manageable; I would take diabete in a heartbeat over HIV.  But, I'd also take HIV over the brain cancer that killed my aunt a few years ago.
However, I hope that in 5 years I am able to still feel this way. If I'm not then it does mean that all of the information I'm being provided by my ID staff is absolute BS.

Have I said anywhere that the current information is BS??? If so I will bow out of these forums for good. What I feel is the biggest difference between where I was then  and where you and several others (your grouping not mine) is that I had and showed respect for individuals that offered a different view point.  A long time survivor, Moffie, jumped my shit one day, did I block him no. As a matter of fact i learned from him and had a great deal of respect for him.  Did I tell someone I disagreed with not to post in my thread no.  Perhaps if some would approach things with a sense of decorum we wouldn't have such a divide between some of us.  But then maybe thats just a southern thing.

Added:  And just for the record I did block someone one time....mtD, but then I missed him to much and unblocked him.  So glad i did too!!!
« Last Edit: December 04, 2010, 05:56:21 PM by woodshere »
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline newt

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #61 on: December 04, 2010, 06:21:05 PM »
HIV can be no big deal and the meds can be boring, if you get your head round HIV being just a virus, and get on the right combination.

It is a great shame the latter is only possibly true of, say, 80-85% or people, and the former for less because of the huge social valuation placed on HIV.

And the people who go round fucking willy nilly cos there's "one pill a day" like it's some simple urethral inflammation are nuts.

But these days, kidneys, heart and bone notwithstanding (and these may well turn out to be overplayed concerns, we don't know yet), HIV and the meds can be no big deal with a little work, or maybe a lot of work, depending on how you take to the whole caboodle you're landed with. It takes time, it takes the right ducks being available to push in a row.

I am reminded daily of my friends who get a diagnosis for which this is life-shattering, fatal even, and who have limited treatment options, even if they can bring themselves to take them up. And this pisses me off, since it can now be a boring and backround extra bit of life detail, HIV. Indeed, should be for everyone. Shame we ain't all there yet.

Nuance, perhaps, is hard. But meds is a huge success, overall. More so for people more recently diagnosed with HIV.

- matt
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Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #62 on: December 04, 2010, 07:22:30 PM »
Well my battery is running down and there's no electricity here.
Will look forward to reading this thread.
Let's here the argments:    listening to Doctors, HIV specialists, research scientists, etc. say there's lots of optimism.  That leads to AIDS denialism and new infections.  Let's here the arguments.  They could be intellectual or researched based. I don't care.  Put them out there and we'll debate.

Um, no, that isn't what I said at all.

I appreciate your desire to debate for its own sake. And in a world where you are assured, more or less, medication and some sort of health monitoring, HIV might be a very different creature.

I do not wish to have an argument, and I am really tired of saying the same thing over and over. Ask me something new, please. Whenever your batteries come back, of course.

I note that several newly diagnosed persons have already had to deal with issues like scrambling for med coverage when jobs evaporated, or maybe/maybe not forgetting to take their meds. This is not a sprint. it's a marathon. You don't run right past the fear and into unlimited sunshine.  It's usually a bit of one, then the other, repeat until you die. Just like life, only a little more complicated.

And can we PLEASE not drag out the diabetes stuff AGAIN? Spend some time with a person without legs, or who has to prick themselves a dozen times a day, or who cannot drive, or cannot see, because of diabetes. And according to studies, the recidivism rate for those who are insulin-dependent is over 90 percent - and THIS is the only long-term chronic/terminal illness to which we have to compare dosing adherence, pre-HIV.

We need Moffie. Goddamn it we need him.


"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

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Offline woodshere

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #63 on: December 04, 2010, 08:38:03 PM »
Thus far the bulk of this thread has been about the meds and their affect on our bodies in fighting HIV,I would like to mention money!!!  This past Oct our agency switched from a PPO to an HSA plan, with 3 days notice.  When a few of us complained about the short notification and the hardship an HSA would cause we were given the option of continuing the PPO one more year and told to be prepared for the HSA next year.  With that in mind, this year I am putting aside enough money to hopefully cover 2011 meds and to meet my HSA $3000 deductable, which the insurance company has said it will cost me the first time I have my meds filled next Dec.  I thought I had everything figured out.  Until this week and it was brought to my attention that our insurance policy is Oct - Sept and the deductable is based on calendar year.  What does this mean?  In Dec 2011 I will pay $3000 and in Feb 2012 another $3000.  For me $6000 spent in 3 months is a great deal of money and it is a big fucking deal.  Now I am all about being hopeful and having a positive outlook on life and I know much can change between now and next year but the reality today is that I have to plan for this.  Of course I guess I could just wait and see what happens and in Feb 2012 when I am asked how would you like to pay your $3000 deductable for the meds that keep you alive I could say "Send the bill to Hope, Optimism and Positive Outlook INC."  This is the reality in which I live.

added:  BTW even after I meet the $3000 deductable I have another $1000 pharmaceutical deductable.  Which means that I will still be paying $100 a month for meds until that is met.  The switch will almost triple my out of pocket health care costs.

edited for punctuation
« Last Edit: December 04, 2010, 09:03:41 PM by woodshere »
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline AlanBama

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #64 on: December 04, 2010, 08:38:13 PM »

And your condescension regarding my perceived fear is noted. It is posts and posters such as yourself that keep me from ever using this forum for personal support. I hope you realize what damage that does to it's intended purpose.


Sadly, this is true for me as well my friend.   We must now find out support in the LTS forum.
I truly do feel like a dinosaur...I don't understand the mentality of some of the newly diagnosed, or their hostility...or unwillingness to "listen and learn".   It all just goes over my head, and therefore I seldom post in this forum anymore.

I agree with you that we sure miss Moffie, and could use some of his good no-nonsense communication.   I am thankful that we have you, and thankful to count you as a friend.
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline buginme2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #65 on: December 04, 2010, 08:53:38 PM »
Woodshed, sorry to hear about the HSA, That is a Big F'ing Deal
Alan, I was diagnosed about a month ago and still reeling.  I totally value your insight.  I want to hear from people who have been through it.  I cant speak for everyone, but I would like some feedback (honest feedback, not just, get over it, everything will be ok..ect) from someone who has "been there"

nychope1

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #66 on: December 04, 2010, 09:11:52 PM »
nyc, I'll say it again - it's a phrase used by many, not just you. I see no crime here. That's not favouritism, that's objectivity.

And even if it weren't, if you don't want to be quoted, don't say it.

Ann, you're alright. That made no sense what so ever but it's all good. You volunteer here and I have a lot of respect for you for doing that. The other two get paid. I think you should start getting compensated for your efforts.  (I am not being sarcastic. I am usually not)

 ;)
« Last Edit: December 04, 2010, 09:22:54 PM by nychope1 »

Offline ElZorro

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #67 on: December 05, 2010, 01:29:59 AM »
Sorry to hear about the financial burden, Woody. I can certainly relate although not HIV related. I recently had to replace my A/C during the hottest part of the summer a couple months back; it's just not practical to wait until you're cash flush when it's 91 degrees in the house. And, you're absolute right. Getting hit with an unexpected $6k is a big deal; regardless of the reason. It seems criminal that the plan you're on would be structured such that you have to straddle two years of deductibles in a single six month period.  :-\

I hope everything works out for you. I really do.

Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #68 on: December 05, 2010, 03:08:00 AM »
Sadly, this is true for me as well my friend.   We must now find out support in the LTS forum.
I truly do feel like a dinosaur...I don't understand the mentality of some of the newly diagnosed, or their hostility...or unwillingness to "listen and learn".   It all just goes over my head, and therefore I seldom post in this forum anymore.

I agree with you that we sure miss Moffie, and could use some of his good no-nonsense communication.   I am thankful that we have you, and thankful to count you as a friend.

Alan, it is for folks like you that I keep the candle it; It is not easy. I am not a strong bearer of that beam. But damnit, so long as it is needed, someone has to struggle to keep it alight, right?

You are too valuable. And I need you too damned much.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

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Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #69 on: December 05, 2010, 03:09:17 AM »
Ann, you're alright. That made no sense what so ever but it's all good. You volunteer here and I have a lot of respect for you for doing that. The other two get paid. I think you should start getting compensated for your efforts.  (I am not being sarcastic. I am usually not)

 ;)

Whom do you think gets paid? And why does that change their authority?

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

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Online BT65

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #70 on: December 05, 2010, 05:35:05 AM »
I've been on HIV meds for about as long as I've been positive (21 years), and I can tell you that the meds have caused irrepairable damage.  I have horrible peripheral neuropathy, which causes my feet to feel like numb weights sometimes, and have pains like I stuck them in electrical sockets other times.  Without warning.  So, it can happen while I'm sitting in, say, a training.  And people look at me so strange when I start stomping my feet on the ground, to try to, well, I don't know what I'm trying to do when I do that.

I also am an insulin-dependent diabetic, which was just diagnosed about 12 years agio.  When I was on a combination that included Kaletra, I can tell you my blood sugars ran very high, and I hated having to stick myself with the fast-acting insulin several times a day.  The diabetes also caused me to have diabetic retinopathy in one eye.  And now that I'm on a combination that contains Truvada, I worry about my kidneys.

Also, when I was on the Kaletra/Trizivir combo, my cholesterol and triglycerides were always very, very high.  So, it was another fucking pill.  And I take several pills now to deal with side effects of either the virus, or other meds I take to combat conditions that are a direct result of the virus.  I take about 26 pills a day, and insulin injections.  And it is a big damn deal.  Taking all those pills, and having to take them at certain intervals during the day (even if I'm at work), is totally unenjoyable.  Before I tested poz, I didn't take any meds for anything fuckin' thing.  The result of the virus, and years of infection/taking pills, is a huge damn deal.  So no one should be so tip-toe-through-the-tulips about taking medications. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline sam66

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #71 on: December 05, 2010, 07:07:17 AM »
     
        Just to make my views clear,  HIV is a horrible nasty virus. It has taken millions of lives, and probably
    going to take many more millions. It is the duty of everyone who is positive not pass the virus on.


    On a happy or sad note depending on how you look at it, few weeks ago I made it to the big " 50 "

    Three years ago when I was diagnosed I thought my life was over, emotionally I went through hell.

    Reading this forum has given me immense mental strength.

    A big thank you to aztecan, Ann, Veritas, Inchlingblue, Newt,  BT65, Hellraiser and many others too
    many to mention, for your time and clear and concise supply of information.

    You all have been vital allies in my battle with HIV.  :-*

     sam
 
december 2007 diagnosed +ve ,

nychope1

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #72 on: December 05, 2010, 12:26:11 PM »
jkinatl2 quote: Beyond that, I was disabusing the notion that HIV and the meds used to treat it are no big deal. I was remarking that this complacency leads to new infections and poor med adherence. One of the posters who has just started Atripla, arguably the easiest medication to acquire and tolerate from a dosing and funding standpoint, was ALREADY having issues with remembering whether he did or did not forget a dose. This after less than two months after starting meds. 

 (from NYC: Why didn't you pull that thread as a quote Hateful hobbit?)

That complacency is the very reason we do not thrust drugs that require an unprecedented degree of adherence upon persons regardless of their ability or willingness to take them, on time, every day for the rest of their lives.

That complacency and inaccurate designation of HIV as No Big Deal also leads to new infections, non disclosure/barebacking when one's VL goes undetected, and the rapid disappearance of the very support systems newly diagnosed persons rely upon to continue their healthy lives.


Ya know Hateful Hobbit,

That is exactly what you are my friend. I was out having fun and enjoying life, yes while on my spooky meds, so I missed your wanna be statement. You proved clearly to me over and over again you have nothing positive to add to this or probably anything in your life.
Your only talent when it comes to attempting to make an argument is taking other peoples threads and twisting them around to prove your dark out look on life.
You have convinced your choir that you are such a great writer. Nothing can be further than the truth.
The light has sparkled through here and there around this forum but those members are surely out numbered.

I urge the newly diagnosed to stay clear from people such as yourself. I will go further and urge the newly diagnosed, that besides from the sound advice from the few members here that represent perhaps the original intent of support, there are a number of people who will try and bring you down.

If you are a strong person with a bright life light leave here before it sours. Not from valid information you may not want to hear but from people who's unfortunate purpose in life is the opposite of yours. That is the real downer not HIV.

You should be ashamed of yourself and look at yourself in the mirror, jkinatl2. What a shame.


« Last Edit: December 05, 2010, 12:37:07 PM by nychope1 »

Offline Miss Philicia

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #73 on: December 05, 2010, 12:31:08 PM »
 ::)
"Iíve slept with enough men to know that Iím not gay"

Offline Andy Velez

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #74 on: December 05, 2010, 12:38:11 PM »
NYCHope, this is the last warning before you get a Time Out. In a short time you've managed to get yourself into alley fights and it has to stop. Next time it's going to be a Time Out for you. I'm mentioning you by name in this instance but I want everyone to really think before adding to this thread. And please don't get back to me about being selected out unfairly. Just cut out the snarkiness. Period. 

It seems sort of ridiculous to even feel the need to say this, but a founding principle of this site is the sharing of information and support. It's not about winning or beating someone at some imagined competition.

So let's have no more slugfesting in here. I want to leave this thread open because the basic themes are serious and worthwhile.

Please, cooperate with this request.
Andy Velez

Offline Rev. Moon

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #75 on: December 05, 2010, 12:39:05 PM »
jkinatl2 quote: Beyond that, I was disabusing the notion that HIV and the meds used to treat it are no big deal. I was remarking that this complacency leads to new infections and poor med adherence. One of the posters who has just started Atripla, arguably the easiest medication to acquire and tolerate from a dosing and funding standpoint, was ALREADY having issues with remembering whether he did or did not forget a dose. This after less than two months after starting meds. 

 (from NYC: Why didn't you pull that thread as a quote Hateful hobbit?)

That complacency is the very reason we do not thrust drugs that require an unprecedented degree of adherence upon persons regardless of their ability or willingness to take them, on time, every day for the rest of their lives.

That complacency and inaccurate designation of HIV as No Big Deal also leads to new infections, non disclosure/barebacking when one's VL goes undetected, and the rapid disappearance of the very support systems newly diagnosed persons rely upon to continue their healthy lives.


Ya know Hateful Hobbit,

That is exactly what you are my friend. I was out having fun and enjoying life, yes while on my spooky meds, so I missed your wanna be statement. You proved clearly to me over and over again you have nothing positive to add to this or probably anything in your life.
Your only talent when it comes to attempting to make an argument is taking other peoples threads and twisting them around to prove your dark out look on life.
You have convinced your choir that you are such a great writer. Nothing can be further than the truth.
The light has sparkled through here and there around this forum but those members are surely out numbered.

I urge the newly diagnosed to stay clear from people such as yourself. I will go further and urge the newly diagnosed, that besides from the sound advice from the few members here that represent perhaps the original intent of support, there are a number of people who will try and bring you down.

If you are a strong person with a bright life light leave here before it sours. Not from valid information you may not want to hear but from people who's unfortunate purpose in life is the opposite of yours. That is the real downer not HIV.

You should be ashamed of yourself and look at yourself in the mirror, jkinatl2. What a shame.




tsk tsk...
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

nychope1

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #76 on: December 05, 2010, 12:45:09 PM »
I wholeheartedly disagree with you Andy. But this is your forum.

It is my advice that you rethink the ground rules of this forum but you may be part of the problem.

Whether one is direct or craftily indirect in their condescension it is still just that. Although justified in my directness all stated is a fact.

I am leaving this forum as it is a unhealthy place. I again urge the newly diagnose to proceed with caution and don't ever let the few sorry individuals skew your positive life force.

Good luck...

Offline hope_for_a_cure

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #77 on: December 05, 2010, 12:51:56 PM »
I wholeheartedly disagree with you Andy. But this is your forum.

It is my advice that you rethink the ground rules of this forum but you may be part of the problem.

Whether one is direct or craftily indirect in their condescension it is still just that. Although justified in my directness all stated is a fact.

I am leaving this forum as it is a unhealthy place. I again urge the newly diagnose to proceed with caution and don't ever let the few sorry individuals skew your positive life force.

Good luck...


NYC - I usually dont get involved in these little online feuds but the more that I read (stuff you author) the more I think that the provocative nature of your posts is a bit over the top.  Chill out dude! 
« Last Edit: December 05, 2010, 07:32:16 PM by hope_for_a_cure »

Offline skeebo1969

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #78 on: December 05, 2010, 01:03:44 PM »
I wholeheartedly disagree with you Andy. But this is your forum.

It is my advice that you rethink the ground rules of this forum but you may be part of the problem.

Whether one is direct or craftily indirect in their condescension it is still just that. Although justified in my directness all stated is a fact.

I am leaving this forum as it is a unhealthy place. I again urge the newly diagnose to proceed with caution and don't ever let the few sorry individuals skew your positive life force.

Good luck...

I don't know why, but I am beginning to doubt your happiness you keep alluding to in your posts.... is that pink cloud turning gray on you there bub?
I despise the song Love is in the Air, you should too.

Online Jeff G

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #79 on: December 05, 2010, 01:05:58 PM »
I just really have to say this to all the new people and the newly infected . As LTS it has never crossed my mind or been my intention to scare or bully anyone . I play around here allot but its my intention to be truthful and careful with the facts , when I don't know the answer I keep my mouth shut , when I'm wrong I admit it and go on .

Its my opinion that the experienced here will be your best friend when you need them .    

nychope1

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #80 on: December 05, 2010, 01:16:03 PM »

It seems sort of ridiculous to even feel the need to say this, but a founding principle of this site is the sharing of information and support. It's not about winning or beating someone at some imagined competition.


Really Andy,

What in jkinatl2 statement had anything to do with either information or support? Nothing. He is just a bully hiding behind his computer and crafty use of words. And yes here in NYC we no what to do with bully's. You are glazing over this quite often. Have some guide lines about this if you truly want to be an unbiased useful moderator to the future new members.
 

Offline Andy Velez

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #81 on: December 05, 2010, 01:26:31 PM »
NYCHope, I calls 'em like I sees 'em.

Yyou just can't seem to allow your "cause" drop. I'm giving you a Time Out for 7 days to cool off. You can always report someone to the the moderators if you think someone is out of line in how you are being treated rather than getting into the kinds of exchanges you continue to indulge in.

If you come back after the Time Out,  I hope it's in a more benign state of mind because otherwise you're going to find yourself very quickly being banned from the site. 
Andy Velez

Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #82 on: December 05, 2010, 02:14:51 PM »
One of the more serious side effects of Atripla is the CNS side effect. In some people, it manifests as a depression that creeps up after weeks or even months on the drug. In others, It can manifest as hostility and rage. Either/both of these are cause to switch the Atripla for other drug regimen. I urge the poster who seems to have such a profound hostility, if this is indeed a newly emerging character trait and not the result of other drugs or alcohol abuse, to see his doctor about it.

People have killed themselves while on Atripla. I do not know the stats on homicide or rage-induced events. My own experience on Sustiva (the ingredient in Atripla which can cause profound personality changes) was very very troubling.

I really, and no offense to Newt, REALLY doubt the 80 - 85% positive rate that Atripla seems to hold in the positive community. Many of us got here directly due to a chemical imbalance, causing depression, low self-esteem, and often undiagnosed mood disorders. And those people are the worst candidates for Atripla (specifically the Sustiva portion of the drug) because of the strong CNS effects.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

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Offline veritas

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #83 on: December 05, 2010, 04:01:55 PM »

jk,

I don't think Newt meant that 80-85% of the positive community think that Atripla is the "DEAL". I believe he meant (he can correct me if I'm wrong) that in the current era of HIV treatment, 80-85% of people have a response to ART , with full viral suppression and rising CD4 cells. The estimates for long term survival are highest for someone who 'gets it right' with the very first ART regimen, i.e. who maintains good adherence from the start and achieves a positive initial response. There are clinical trials of ART in which the majority of people on ART have done well for seven years, and cohort studies in which patients are well controlled for 10-15 years. I believe the aforementioned is what he was referring to. The treatment of the disease has definitely changed from the time we were first infected. If one must be positive, it's a hellova lot better today rather than 1990. Of course, it's better to be negative (hiv of course).

v

Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #84 on: December 05, 2010, 08:32:15 PM »
Agreed, veritas, to a large degree. ATRIPLA is of course an obvious choice, but other relatively recent drug therapies (I am thinking Isentress, Prezista and the like) have made HUGE inroads in reducing side effects and helping promote adherence.

And I agree about the percentage of the population who has a response to HAART, from rising CD4 counts/percentages to lower viral loads. The estimates for long term survival really DO depend on "getting it right" the first time, as repeated treatment failures (especially those caused by side effects) do nothing to promote drug adherence.

For those of us who are LTS folks, it really is a study in cognitive dissonance to maintain drug adherence. A lucky few have the fortitude to do so, and I admire them.

That is another reason I think that pushing people onto Meds before they are prepared to take them can - does - and will lead to trouble down the road. That is yet another reason why sites like this one are SO important, and why ALL perspectives are helpful in making arguably one of the biggest decisions a person is likely to make.

I think we censor or limit discourse regarding this topic at our own peril - our own individual peril, and our collective peril as we try to stop this virus at both levels.



"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline GSOgymrat

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #85 on: December 05, 2010, 08:45:36 PM »
For those of us who are LTS folks, it really is a study in cognitive dissonance to maintain drug adherence. A lucky few have the fortitude to do so, and I admire them.

I don't understand what you mean here.

Offline komnaes

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #86 on: December 05, 2010, 10:40:37 PM »
The effects of Sustiva on CNS are something that keep making me unease to say the least, and despite my good numbers the side effects that pop up regularly are reminder that my pet virus is still a very hard bug is live with no matter what my docs are telling me. For me after the initial period I struggled for months with violent nightmares. They were not something I liked to talk about then except to a few (Jonathan included, and I am thankful). Having found a good therapist helps a lot, but 2 yrs into HAART I can share that there are still constant (though not so regular) spills of, er, moodiness that I fight to control, and I do wonder often how the drugs are changing me mentally..

So thanks for bringing it to the forefront Jonathan..
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline veritas

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #87 on: December 06, 2010, 07:49:35 AM »
I don't understand what you mean here.

GSO,

Cognitive dissonance means  an uncomfortable feeling caused by holding conflicting ideas at the same time.
Thus, LTS's know the problems caused by the early drugs (ie:AZT), so some are hesitant to maintain adherence with the newer drugs expecting the worse (fear).
This is where research comes in. If one knows the probability of a medicine to do you harm (ae's) or not, one can feel a lot more comfortable being adherent with that particular medicine. In some cases, for a LTS, they have no choice, thus the fear increases, leading to bad decisions.


jk,
Overcoming this fear, is another burden that LTS's have to deal with. Newly diagnosed have the options to maintain a "relatively" benign treatment regemin. This is not to minimize the importance of adherence or the fact that they are dealing with a deadly disease. As we all know, if you don't take your meds, you will die. No one should fool around with this disease. However, the newly diagnosed are coming from a different place and will almost assuredly   fair much better in dealing with this disease.

 At this point in time , I'm of the opinion to test and treat. Research is moving at a fast pace, so why not minimize the potential damage the virus can cause to one's body? If some of us LTS's are still around with the horrors of the early meds, the newly infected will be around for a very long time.

v

Online mecch

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #88 on: December 06, 2010, 08:42:10 AM »
For those of us who are LTS folks, it really is a study in cognitive dissonance to maintain drug adherence. A lucky few have the fortitude to do so, and I admire them.

That is another reason I think that pushing people onto Meds before they are prepared to take them can - does - and will lead to trouble down the road. That is yet another reason why sites like this one are SO important, and why ALL perspectives are helpful in making arguably one of the biggest decisions a person is likely to make.

I think we censor or limit discourse regarding this topic at our own peril - our own individual peril, and our collective peril as we try to stop this virus at both levels.


You are saying that LTS have some sort of contradictions that might impede drug adherence.  "Cognitive dissonance is an uncomfortable feeling caused by holding conflicting ideas simultaneously. The theory of cognitive dissonance proposes that people have a motivational drive to reduce dissonance. They do this by changing their attitudes, beliefs, and actions."  http://en.wikipedia.org/wiki/Cognitive_dissonance

I don't get this.

"That is yet another reason why sites like this one are SO important, and why ALL perspectives are helpful in making arguably one of the biggest decisions a person is likely to make."
Taking HAART was a nobrainer for me.  I wasn't fightng HIV and the ID told me to start HAART.  I guess its much much heavier and complicated for many if not most people, for all sorts of reasons.

Taking HAART wasn't really a "decision".  The doc and body said it was time.  Where's the decision.  It was an adjustment but it seems minor compared to my life so far.  

Many big decisions in my life - have been choices like - should I take this job? Should I change careers? Should I move abroad?  Should I get such and such degree.  Should I quit my boyfriend.  Etc etc. etc.




ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline GSOgymrat

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #89 on: December 06, 2010, 10:41:44 AM »
As a LTS I'm here because I took the meds, any meds. I know what it is like to take meds that make you feel bad and don't even make you undetectable. I remember going from medication to medication and my CD4 slowly dropping. It took 10 years before I was undetectable and my CD4 stopped declining. Now that I'm on meds that actually work and don't have immediate side effects life is much easier. These meds may stop being effective, they may kill my liver, they may give me cancer, etc but those outcomes lack the immediacy to make me not want to take my meds. Even if the doctors said "these meds are killing you but we don't have an alternative" I would still be juggling meds and doing whatever I could to stay alive and healthy.

Treatment noncompliance is not specific to HIV. People with diabetes, seizure disorders, mental health problems, cardiac conditions, etc can have demanding medication regimens. People with HIV are not unique in that regard and some of us have multiple conditions.

LTS know first hand what happens if people don't follow their treatment regimen. If a LTS is having trouble maintaining a medication regimen I would recommend counseling to figure out what is going on.  Newly infected may be conflicted and fearful about when to start meds but those of us who have been around the block should know better. Personally I think one reason newly infected and LTS should not segregate themselves is because LTS can hold the newly infected's hand (or kick them in the butt) regarding strategies to deal with meds and HIV and conversely the newly infected can remind LTS that it is not 1989 anymore and people infected now who have access to medical treatment (a big qualifier) have reason to be hopeful.

Also, I have never met anyone in person who didn't think HIV was a big deal. I'm not saying that attitude doesn't exist or isn't a problem but I think it must be primarily a young, urban gay issue. Where I live the bigger problems are stigma and ignorance, not minimizing the condition. For example, at the AIDS Walk yesterday I was listening to a fellow walker who was saying "it's terrible when people with AIDS are treated like lepers because some of them are just innocent victims who could have got it through a blood transfusion." This was a gay man in 2010 walking in an AIDS Walk!
« Last Edit: December 06, 2010, 10:46:58 AM by GSOgymrat »

Offline sam66

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #90 on: December 06, 2010, 02:04:43 PM »


Treatment noncompliance is not specific to HIV. People with diabetes, seizure disorders, mental health problems, cardiac conditions, etc can have demanding medication regimens. People with HIV are not unique in that regard and some of us have multiple conditions.

LTS know first hand what happens if people don't follow their treatment regimen. If a LTS is having trouble maintaining a medication regimen I would recommend counseling to figure out what is going on.  Newly infected may be conflicted and fearful about when to start meds but those of us who have been around the block should know better. Personally I think one reason newly infected and LTS should not segregate themselves is because LTS can hold the newly infected's hand (or kick them in the butt) regarding strategies to deal with meds and HIV and conversely the newly infected can remind LTS that it is not 1989 anymore and people infected now who have access to medical treatment (a big qualifier) have reason to be hopeful.  

      wise words GSO


  Jkinaltl

           whilst it is perfectly legitimate to address issue of complacency towards HIV   ( and medication) especially amongst the young it must be done without  installing fear and alienating the very group one is concerned about

                      Installing fear about meds can cause Nocebo effect on those who are about to or are allready on medication.  
                    
                   "  when patients taking medications experience adverse side effects unrelated to the specific pharmacological action of the drug. The nocebo effect is associated with the person's prior expectations of adverse effects from treatment as well as with conditioning in which the person learns from prior experiences to associate a medication with certain somatic symptoms. Anxiety and depression predispose to the nocebo effect.
"  

         http://www.medterms.com/script/main/art.asp?articlekey=31482

    
« Last Edit: December 06, 2010, 03:39:24 PM by sam66 »
december 2007 diagnosed +ve ,

Offline RapidRod

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #91 on: December 06, 2010, 05:12:21 PM »
     wise words GSO


  Jkinaltl

           whilst it is perfectly legitimate to address issue of complacency towards HIV   ( and medication) especially amongst the young it must be done without  installing fear and alienating the very group one is concerned about

                      Installing fear about meds can cause Nocebo effect on those who are about to or are allready on medication.  
                    
                   "  when patients taking medications experience adverse side effects unrelated to the specific pharmacological action of the drug. The nocebo effect is associated with the person's prior expectations of adverse effects from treatment as well as with conditioning in which the person learns from prior experiences to associate a medication with certain somatic symptoms. Anxiety and depression predispose to the nocebo effect.
"  

         http://www.medterms.com/script/main/art.asp?articlekey=31482

    
Then you are of the old school. "Let em find out for themselves." Maybe if HIV education had the nocebo effect less people would be contracting HIV.

Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #92 on: December 07, 2010, 10:10:43 AM »

Taking HAART wasn't really a "decision".  The doc and body said it was time.  Where's the decision.  It was an adjustment but it seems minor compared to my life so far. 

Many big decisions in my life - have been choices like - should I take this job? Should I change careers? Should I move abroad?  Should I get such and such degree.  Should I quit my boyfriend.  Etc etc. etc.


As is seen on this site (and many others (also movies and television and in our own lives) these decisions often require excruciating and prolonged examinations, and in many cases do nor resolve until long after the time for a "healthy" transition to  occur.

People stay in bad relationships month, years after identifying them as such. People continue unhealthy habits long after being quite aware of their impact. Change, real and lasting change, happens slowly and with great fortitude.

In the case of HIV med adherence, especially (though not exclusively) for LTS people who have dealt with the often lifelong issues related to drug therapy in addition to permanent damage caused by AIDS, taking the next round, and the next and next, becomes spiritually as well as physically daunting.

Perhaps this subset of the topic more appropriately belongs in the LTS forum, where that rather unique experience can be hashed out with more relevant personal opinions. And where people who are newly diagnosed do not think this is inevitable. Surely as was mentioned earlier, it is FAR less of a consideration now than ever before.

In cases not necessarily related to HIV, but certainly tangentially so, such as depression, the accumulated losses (lovers, careers, personal health and stamina, and the like) I submit it DOES become, for those people, a case of cognitive dissonance in order to avoid (or reverse) "burnout" and embrace yet another round of drug therapy. A therapy which, sadly, gives no real time for long term cognitive behavioral therapy to take real effect.

In emotional disturbances like depression, which often have a chemical base that predates an HIV infection (but in no way can be stood apart from it) the treatment is usually far from a cure. It waxes and wanes. Someone might find themselves kissing doses after the death of a friend, or the loss of income, or a physical problem that manifests despite (even because of) long term use of medication. The changes one must undergo in order to return to adherence is indeed cognitive dissonance.

It is embracing a mindset and having faith in the outcome, despite experience to the contrary. Intellectually, we can comprehend the need for such therapy, and even understand the advancements in medical development that have dramatically reduced the side effect profile. But in order to wrap ourselves around the notion to the degree we must, we have to ignore the things which have passed before and re-re-re-embrace the drugs, even as many of us, disenfranchised and often abandoned by society, to continue.

I am reminded of an author's take on remarriage. He remarked that it was the triumph of hope over experience. Each new combo is a remarriage, and that hope, great as it may be, diminishes whenever that experience is refreshed and renewed. I do not think, with all due respect to GSOGymrat, that it is as simple a matter as seeking therapy and moving past it. Well, I DO think that is an excellent start, and vital to overcoming the adversity from within, but the time that real and lasting personal change takes is often more than the individual has.

Many of us simply do not have the luxury, from a viral and health standpoint, of the long-term therapeutic model when we are facing an illness that easily repossess the "borrowed" immune system many of us have.

Nor of keeping employment during these times of great distress. Nor of maintaining/protecting a world that may have already grown perilous, thanks to external manifestations of depression and "burnout" such as hoarding, substance abuse, withdrawal from society, remaining in bad relationships.

Sometimes the most important and most compassionate thing a person - or a forum - can do, is to remind those in need (and we are all of us in need at some point) that we are truly not alone.

Rather than show disdain or impatience towards those without the fortitude for change, especially for those who have undergone tremendous loss and garnered experiences that preclude the easy embrace of re-attachment (to life, to love, to drug therapy) I think that it is vital to attempt to understand and sympathize, to offer what limited help a medium such as this allows, and when we feel close enough, to reach out in private and simply be a friend.



"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #93 on: December 07, 2010, 10:40:21 AM »
      wise words GSO


  Jkinaltl

           whilst it is perfectly legitimate to address issue of complacency towards HIV   ( and medication) especially amongst the young it must be done without  installing fear and alienating the very group one is concerned about

                      Installing fear about meds can cause Nocebo effect on those who are about to or are allready on medication. 
                     
                   "  when patients taking medications experience adverse side effects unrelated to the specific pharmacological action of the drug. The nocebo effect is associated with the person's prior expectations of adverse effects from treatment as well as with conditioning in which the person learns from prior experiences to associate a medication with certain somatic symptoms. Anxiety and depression predispose to the nocebo effect.
"   

         http://www.medterms.com/script/main/art.asp?articlekey=31482

     

There is certainly a fine line between having and espousing a realistic point of view, warts and all, and instilling fear. But I wholeheartedly reject the Nocebo argument. It is that argument, personally, that nearly cost me my life on several occasions.

I experiences profound personality changes on Sustiva. Personality changes that were not, thanks in part to withholding from the pharmaceutical company (and thanks in part to the newness of the drug) part of the lexicon of potential issues associated with the drug. And these changes, unlike other side effects I had, were slow (months) to manifest fully. It's easy to dismiss a gradually appearing depression as just that, a depressive episode to be dealt with in therapy, to grit one's teeth and surge past.

But my own experiences were some of the most scary I have ever had. I don't feel the need to go into detail, but I will say that my HIV doc at the time was remarkably dismissive of them as being related to the drug, even though they were non-existent to a large degree before the drug therapy began. Even though they had NO logical or event-specific cause. Even though intellectually I knew there was NO reason for these cognitive issues to manifest. he simply recommended therapy, and prescribed a dose of Welbutrin that was roughly  twice the average dose. And then Klonopin to quell the anxiety that followed such a regimen.

How did I get help? How did I even survive? After weeks of suicidal preoccupation, I went to one of the few HIV groups I had ever attended. Even here on AIDSMEDS, CNS effects insofar as the meds were concerned had not been a topic of great discussion, Sustiva being a new drug, and emotional/mental issues still a somewhat taboo topic.

In that group, I encountered over a dozen men and women who were having or had experienced VERY similar issues, and ALL of them after starting Sustiva. For some people, it is simply not a good fit At All.

In course, I found another doctor, who switched my regimen. And the CNS effects disappeared within a week. Placebo effect? Maybe. But the degree of my altered state was so profound, and the experiences of others so similar that I cannot write it off. And of course, within a year, Sustiva's side effect warnings included precisely the CNS issues I had experienced.

It was not evidence of anecdote + time + plurality = data. It was evidence of a known side effect of a drug escaping the public knowledge. I think I am being generous when I attribute this to a misreading of the data, a misinterpretation based on statistical evidence that many people with HIV have cognitive issues ranging from sometimes suicidal depression to rage. The cynical side of me lifts an eyebrow.

But because I was not informed, I was not vigilant. And it is only my own dogged determination that led me to the correct diagnosis, and the correction of the problem.

While I understand (read the AM I INFECTED forum sometimes) the power the human mind has to manifest symptoms when they are expected (even encouraged) I do not think that minimizing the potential effects of these drugs does most people a favor. Especially when dealing with the very dicey issues of mental stability and emotional health. Taboo topics at the very best of times.

I am in no way advocating fear-mongering. Nor do I think that it does any good to spend one's life peering at a list of possible complications from drug therapy and warning others of the minutiae of possibility, however  remote.

If you look at any thread regarding Atripla in which I participate, you will see that while I mention the caveat of possible CNS effects, I do not, as a rule, tell my story. It might scare the hell out of people already afraid. And it is not a relatively common issue (not to the point that my own CNS effects manifested) in persons without a pre-existing history of depression or other mood disorders.

That sort of thing, I grant, would have the potential to cause great harm and minimize the greater good that the drug has proven to accomplish. And i would expect to be privately or publicly cautioned about that. And I would certainly deserve it.

Especially now, as times have indeed changed, and doctors know to take seriously the possibility of profound CNS effects, and respond accordingly.

I use my own experience, reluctantly, as an example. It is not a cautionary tale as regards Atripla It is  a cautionary tale against unduly weighing the "Nocebo" effect over the full disclosure (which, especially as regards the newer/newest drug therapies, is often ignorant of long term impact) when deciding to take, to advocate, to instigate the lifelong process of HIV meds.

I honestly do not think it is an "either-or" situation. You can be honest without being alarmist. You can be truthful and supportive and still be optimistic and filled with hope. Especially for those newly diagnosed, whose first-line of medication may be so benign as to render HIV a total non-issue from a pharmaceutical point of view.



"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline sam66

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #94 on: December 07, 2010, 11:44:29 AM »
     
              Jkinaltl
                        I assume you are not on Atripla or Sustiva any more
december 2007 diagnosed +ve ,

Offline GSOgymrat

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #95 on: December 07, 2010, 11:53:31 AM »
Jkinatl2, that is a disturbing story and I'm glad you were able to identify what was going on and get through it. I think that disclosing personal stories, like you just did, is much more helpful and meaningful than a clinical list of possible side effects. My feeling is the more information the better. Not having information about a condition is scary, only having part of the information can be even worse and the more perspectives we have the better we can understand the complete picture.

Offline sam66

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #96 on: December 07, 2010, 12:31:19 PM »
   
            Jkinaltl
                       Before I was prescribed Atripla ( Sustiva ) I had to complete a thorough questioner on any
                   mental health issues I may have had in the past, including any family history.

                   I wonder if you did any thing similar ?
december 2007 diagnosed +ve ,

Offline Miss Philicia

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #97 on: December 07, 2010, 12:40:29 PM »
   
            Jkinaltl
                       Before I was prescribed Atripla ( Sustiva ) I had to complete a thorough questioner on any
                   mental health issues I may have had in the past, including any family history.

                   I wonder if you did any thing similar ?

IMO this should be routinely done, but from reading this web forum for the past four years I really don't think it is sadly.  In fact, it seems a large portion of doctors don't even advise patients about the distinct possibility of CNS issues, or that for some people they appear in the first several months but that for others they may go several years with no issue and then the problems starts to surface, etc.  And that's what disturbs me most about this medication -- the lack of proper advice and consultation.
"Iíve slept with enough men to know that Iím not gay"

Offline phildinftlaudy

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  • sweet Ann what you think babe...
Re: HIV meds, and the fallacy of "no big deal"
« Reply #98 on: December 07, 2010, 12:44:03 PM »
   
            Jkinaltl
                       Before I was prescribed Atripla ( Sustiva ) I had to complete a thorough questioner on any
                   mental health issues I may have had in the past, including any family history.

                   I wonder if you did any thing similar ?
I've been on it for about a year now and never had any type of questionaire done before it was prescribed, nor has any of the two ID docs I've had since being prescribed it mentioned anything about CNS issues (current or potentially in the future).
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline Miss Philicia

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #99 on: December 07, 2010, 12:54:35 PM »
I've been on it for about a year now and never had any type of questionaire done before it was prescribed, nor has any of the two ID docs I've had since being prescribed it mentioned anything about CNS issues (current or potentially in the future).

You're fired!
"Iíve slept with enough men to know that Iím not gay"

 


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