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Author Topic: HIV meds, and the fallacy of "no big deal"  (Read 20964 times)

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Offline jkinatl2

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HIV meds, and the fallacy of "no big deal"
« on: December 03, 2010, 12:59:06 PM »
Why is it the HIV drugs become this spooky thing that is so terrible.


I would like to start this discussion, which might help explain some of our caveats regarding HIV meds as being "no big deal."

I suppose dealing with the common drug(s) known as Atripla is a decent starting point.

Atripla, as I am sure most people are aware, is actually several drugs, pressed into one.

Atripla, which contains efavirenz + tenofovir + emtricitabine, AKA Sustiva, Viread, and EMtriva, is no more or less effective than taking those three drugs individually. Formulated into a single pill, it is (as of this date) the easiest pill to take for HIV.

It is this ease of use that, I fear, creates a mindset who which I refer as "vitamin AIDS."

It is absolutely the easiest regimen to take. HIV meds in general are also considered, still, some of the potentially harshest methods of chemical therapy (called Chemotherapy) used outside of an outpatient hospital setting.

Many people with HIV have pre-existing mental health issues such as depression or anger issues. In these people, the CNS impact of Atripla cannot be dismissed or understated.

It is not unusual for these unwanted effects to manifest after several months on the drug. This is why careful monitoring of the patient is necessary, not only by hsi HIV doctor but also friends and family should take note of changes in behavior. Aggression, paranoia, thoughts of suicide are NOT confined to persons with previously diagnosed mental illness. Often, latent chemical imbalances manifest. Several suicides, and it is suspected, several homicides have occured while under the influence of this drug.

HIV resides in the human brain. Many drugs do not cross the barrier between the bloodstream and the brain. It is not uncommon that, when a drug manages this feat, Central Nervous System effects manifest themselves. For some, these effects are as benign as vivid dreams and dizziness that may subside over a few weeks or months. Sometimes simply taking the pill before bedtime negates any potential problems.

Being honest with one's self, open enough to accept objective critiques regarding changes in mood or behavior, and continuing that honesty with one's doctor can go a long way towards mitigating these effects. Sometimes counseling helps, and sometimes changing medication is warranted.

The unwanted effect from the Viread aspect of Atripla mainly impact persons with pre-existing kidney issues, something that blood work can detect and monitor. Lactic acidosis and severe liver problems have been reported, in enough quantities to necessitate a careful eye insofar as blood work is concerned. Pregnant women are especially susceptible to lactic acidosis, as this manifests in greater numbers when patients are taking NRTI meds like Viread and Emtriva, both components of Atripla.

In addition, osteoporosis and related bone density changes are possible with these meds. People who have a genetic predisposition to those ailments need to have bone density testing at regular intervals. This forum has many stories of broken bones and low bone density manifesting itself as the result of these drugs. Women in particular seem to be prone to that situation, though many men have encountered it as well.

Persons with Hepatitis B need to be carefully monitored when taking (and especially if stopping) Atripla, as the Emtriva component acts as a suppressive force against Hep B, and when stopped suddenly, can actually cause a "flare-up" of the illness. This can be very dangerous to the liver, and while transplants for HIv positive persons are now possible, they are far from common.

And, of course, from AidsMed's own library:

<<HIV drug regimens containing Sustiva, Viread, and Emtriva can cause increased fat levels (cholesterol and triglycerides) in the blood, abnormal body-shape changes (lipodystrophy; including increased fat around the abdomen, breasts, and back of the neck, as well as decreased fat in the face, arms, and legs). These side effects of HIV drug therapy are reviewed in our lessons on Lipodystrophy, Facial Lipoatrophy, and Risks To Your Heart (Hyperlipidemia).>>

These side effects seem far less profound than earlier drugs, and earlier incarnations of these drugs. As time and science progresses, I am certain that these effects will be further minimized. But they are real, and it is not at all unusual for those who have taken HIV meds, including Atripla, for any length of time to need cholesterol medication as well.

Aspirin has side effects as well, and in rare cases can be fatal. This is true of any chemical we introduce into our bodies. People often, and wrongly, assume that Over The Counter meds are harmless, and cannot interact with prescriptions. This is simply not the case (St. John's Wort comes to mind).

However, Atripla is not aspirin. It is one of the mot potent medications prescribed to treat one of the deadliest pathogens in the last seventy years. For many people, taking Atripla presents a brief blip in their routine schedules.

And this is one of the most profound advancements in medical history. The newest meds used to treat HIV are truly modern medical miracles. They work for many people. But are serious enough to be investigated thoroughly, and taken with care. The commitment to taking these meds every day for (currently) the rest of one's life can be daunting, especially during the first year or so of diagnosis when a person might be grappling with depression, stigma (self imposed or external) and other life changes.

In addition, cost is a factor. several members who once touted HIV as a total non-issue have found themselves scrambling to ask assistance (often from the same LTS people they derided) when their jobs downsized, or when they graduated college and tried to get employment in this economy, or when they lost their jobs or income or insurance. It is almost impossible for a non-wealthy individual to pay for these meds out of pocket in the USA. And though many meds are offered in generic form overseas at dramatically reduced prices, ordering and receiving them is often problematic.

HIV drugs are not spooky. But they are not benign. They are extremely effective and extremely powerful drugs, which require a stability of income (or insurance) and commitment to adherence that has few peers in medical treatment.

I was going to post this in Just Tested Positive, because the topic was "Living with HIV." But have decided to start it's own thread in Living With HIV because this really is about THAT, more than about the issues for the newly tested.

"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

Online Miss Philicia

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #1 on: December 03, 2010, 01:12:11 PM »
Thank you for this, Jonathan.  Though (for whatever reason) I've lately been labeled some sort of Negative Nancy when it comes to current HIV treatment, I've been one of the longer standing members that has repeatedly stated that once newer HIV meds (newer than even Atripla) were FDA approved that there was IMO a sea change in treatment optimism (think Prezista, Isentress, Intelence, etc.).  However, making statements that one won't ever get sick, or never have side effects, even from those named meds is simply poppycock, pish posh, etc.

I honestly understand the anxiety that comes with commencing a drug regimen for the rest of your life, as well as the continual drone of doctor appointments even if they've been lessened to 3 a year.  But one can only manage this anxiety with knowledge, not burying one's head in the sand.  If, after a reasonable amount of time, a patient still finds themselves with an overbearing sense of general, daily anxiety no amount of posting on an internet message board will help -- they should seek the counsel of an experienced mental health professional.  For some reason I'm always surprised that this avenue isn't explored, as the mental component of a life-threatening disease is every bit as important as the physical one, totally integral to disease management.
"Iíve slept with enough men to know that Iím not gay"

nychope1

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #2 on: December 03, 2010, 01:17:02 PM »
Thank you for all of that great information provided in one place. At the time before Atrpla I had to really search around to read all about it.

Even my wonderful doc, who I mentioned before, had much much less trepidation about this then what I read around here. He was on the front lines since the beginning of the epidemic.

This information is very valuable to then get comfortable in taking the stuff. It was for me. Things like Lipo and all...well, probably not going to happen from Atripla and a lot of the other drugs for the newly diagnosed.

I read all I could. Everywhere. About every drug available. At the end of the day one probably should do that but not get hung up on what is going to be in 20 or 30 years or side effects. Go listen to the next commercial on TV for a new drug. It is a comedy routine.

As someone so eloquently said here... the best way to find out if a med works for ya is to take it. Great advice.

At the same time, jknati2, (AS YOU MENTONED)  can go into my medicine cabinet and pull out several medicines that have nothing to do with HIV and have as many side effects. Some over the counter drugs have tons of side effects and implications.

So, yes, your doc will naturally monitor you for all of those things mentioned. Every three or four months, if you are lucky every six months.

It is my daily vitamin. That's exactly what it is.

So go on and nit pick about my choice of words using "no big deal" but that's what it is to me. (That's how we talk here in NY I guess) Hopefully the newly diagnosed will find some comfort in that.
« Last Edit: December 03, 2010, 01:30:21 PM by nychope1 »

Offline RapidRod

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #3 on: December 03, 2010, 01:34:52 PM »
Thank you for all of that great information provided in one place. At the time before Atrpla I had to really search around to read all about it.

Even my wonderful doc, who I mentioned before, had much much less trepidation about this then what I read around here. He was on the front lines since the beginning of the epidemic.

This information is very valuable to then get comfortable in taking the stuff. It was for me. Things like Lipo and all...well, probably not going to happen from Atripla and a lot of the other drugs for the newly diagnosed.

I read all I could. Everywhere. About every drug available. At the end of the day one probably should do that but not get hung up on what is going to be in 20 or 30 years or side effects. Go listen to the next commercial on TV for a new drug. It is a comedy routine.

As someone so eloquently said here... the best way to find out if a med works for ya is to take it. Great advice.

At the same time, jknati2, (AS YOU MENTONED)  can go into my medicine cabinet and pull out several medicines that have nothing to do with HIV and have as many side effects. Some over the counter drugs have tons of side effects and implications.

So, yes, your doc will naturally monitor you for all of those things mentioned. Every three or four months, if you are lucky every six months.

It is my daily vitamin. That's exactly what it is.

So go on and nit pick about my choice of words using "no big deal" but that's what it is to me. (That's how we talk here in NY I guess) Hopefully the newly diagnosed will find some comfort in that.
Quoted from an expert that was diagnosed two months ago. You have a lot to learn.

Offline skeebo1969

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #4 on: December 03, 2010, 01:35:28 PM »


   I think you have more fear about this than you let on.  If this is such a cakewalk for you why waste your time here?
I despise the song Love is in the Air, you should too.

nychope1

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #5 on: December 03, 2010, 01:46:07 PM »

   I think you have more fear about this than you let on.  If this is such a cakewalk for you why waste your time here?

I am naturally not a fearful person. About most everything in my life. That can be troublesome sometimes.
I was however very fearful about starting meds even though I spoke with a lot of people who share my sentiments about it. I am here because I am off from work this week and am probably wasting too much time right now.
On a serious note... I care enough to take the time to post this somewhat over zealous positive attitude so that someone here may find comfort from it.
My opinion is not for everyone and one size don't fit all. I wonder why this is so bothersome to some...

Okay got to get going out of here. Good thread... keep it going.
« Last Edit: December 03, 2010, 01:49:58 PM by nychope1 »

Offline woodshere

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #6 on: December 03, 2010, 02:13:51 PM »
"But how can it be a big deal.  All the men I seen in ads are happy, active and really super HOT! I chose my treatment because that blond was really built."  I think in pushing us to choose their drug, pharmaceutical companies have packaged their ads in a way that helps promote this no big deal mentality.  

When I talk about my meds, I always preface what I say with something like "for me" or "from my experience"  because for me at this time I have had no problems.  I then always say that I am not sure what will happen in 10-15 years because there is no telling the damage that is being done to my body.  As a matter of fact in my first appt with my specialist as we discussed meds he said that the odds of me dying from AIDS were not nearly as great as complications from the meds.  Recently I am amazed at how much I remember things Moffie used to say.  I remember somewhere him saying something to the effect that since HIV is always changing, the meds may stop working completely one day because this living virus we have has managed to develop immunity to the drugs we have.  The jury is still out and won't be back in for years.

BTW Jonathan, excellent posting.
"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 jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #7 on: December 03, 2010, 04:36:49 PM »
Thanks for the kind words, and thanks for the measured response, NYC.

One of the things that pops up now and again, most often from newly diagnosed members, is the notion that when one develops resistance to a combination (or class of drugs) it is somehow the "fault" of the person, the patient. Doctors are, sadly, usually the first to accept this.

People who are coerced into starting meds before they are ready are most at risk. And some on this forum have, at times, shown some really judgmental attitudes. The notion that this is a cakewalk makes such judgments easier to pass.

That is, of course, another discussion. But it is directly related to this one, and yet another reason why perhaps the most important medical decision in a person's life deserves gravity and careful consideration.

I honestly think that the way to overcome fear is not to deny it, but face it, push through it, and temper blind faith and hope with the clarity of an open mind and open eyes.

And Woodshere, not a day goes by when I don't remember the things Moffie said. They are as relevant now as they always were. Sometimes when I find myself outraged, I think I try )in vain) to channel that wise, cranky man.

"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 eric48

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #8 on: December 03, 2010, 07:02:04 PM »
Hi,

I do not really get the point of this thread, but let me side by Miss P on all aspects of her post.

Especially "one can only manage this anxiety with knowledge"

I've come a long long long way in the last 6 months and this forum has been of immense help.

There is a mixed bag of people here... Newly infected (and less anxious because they know science has made great leaps forward)
 people who have been infected 10-15 years ago and have fought the up hill battle losing loved ones on the way. People born with the virus, people taking meds, some not.
Some have a long history with the virus, some not

Some favor disclosure, some not, some can afford treatment, some not.

I agree that "no big deal" is false.

But I hope that we (collectively) can put all this in perspective, nonetheless.

Of all the nasties I see around me (friends fighting colon cancer, parents with Alzheimer, colleagues with type I diabetes, etc.)
Of all the misery for life (unemployment, stress, debts ) that lurk around,
I think the HIV is pulling so many theads and going so deeply in the complexity of science/society/public health/what-have-you

that I am starting to find it absolutely FASCINATING (and my apologies to those who have deeply suffered and may find that statement ludicrous)

I agree that "no big deal" is false.

But if life was easy, it would not be that enjoyable

And life is FUN !

We CAN collectively put things in perspective and help each other gain the momentum to FIGHT

If this is where this thread is heading, then I get the point.

Cheers

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 2 months

Offline Lucky2behere

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #9 on: December 03, 2010, 08:54:51 PM »
These are very honest posts, and as much of a downer as this thread seems to be, it is certainly a wake up call. I'm not afraid of dieing... I'm afraid of being humiliated by people and being sick as hell. This isn't like the MTV Real World where that young Gay boy died years ago and there's all this love and support around me. This is the real world of fear and discrimination and hate and ignorance. I used to think/plan/ to just go quietly into the woods and just starve and die, never to be found.
But that's not the case, so here I go Sunday starting these new meds that kinda scare the ____ out of me but into the void I go, not knowing what a month or a year will bring.
So yea, starting the meds and continuing on the meds are a big deal.
Thanks JKinATL2 for the thread and the very clear description of what this life on meds is all about and to Miss P, I never thought you were anything but honest also. And I do continually thank everybody on here because I do appreciate all of you being around because it would truly suck to do this alone!
And I'm hoping the meds will work for me and not make me sick but I don't want to die this year, so I'm going to give it my best. Cheers to the Long-term Survivors. And you all can be very funny sometimes too. ;)
March 2010 tested HIV Pos
probably infected 2.5 years
Sept.  2010 CD4 520 %24 vl 18,000
Nov.   2010 CD4 560    ?   vl  1,400
Dec. 5 2010 Started Truvada Isentress
Jan.  5 2011 CD4 380   ?    vl      63

Offline buginme2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #10 on: December 03, 2010, 09:05:38 PM »
jk...Awesome post.  Its really quite a head trip being newly diagnosed and facing it all.  I admire NYChope for his optimism but I'm not there.  I'm just not, and Its fine.   Thanks for the post though, I'm kind of tired of people blowing sunshine up my ass , like taking meds is equivellant to flinstones vitamins and HIV is no big deal.  Its a huge deal for me, and im still trying to deal. 

Offline tednlou2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #11 on: December 04, 2010, 01:29:05 AM »
I regularly get private messages from 2 members asking me about HIV and their fear of HIV and meds.  I rarely see these members posting in threads.  I'm not sure why they have sought me out.  I'm definitely no expert and have a lot to learn myself.  Maybe these 2 are contacting several people here.  I keep my responses to my own experiences about becoming poz, learning my diagnosis, and coping.  I avoid answering anything I don't know enough to answer.

Both always talk about reading posts from members here who have medical issues despite being on meds.  I don't know exactly how to answer that.  I've read where many docs/experts say this is due to people infected years ago and started on the older meds that were really toxic.  Many of those docs and experts tell us people starting on today's meds shouldn't have all those issues.  These 2 members will say they've read posts from people who were infected before HAART, but were able to hold off on meds until HAART and still have a lot of medical issues.  Or, they'll talk about people who have been infected less than 10 years, started meds, and now have liver issues or other problems.  They fear the meds are causing those problems.  I respond saying it is hard for me to keep up with who started meds when, who was infected when, or who is having medical problems.  I will just tell them I have the same concerns about what life with HIV is really going to be like. 

I'll read things experts and docs write where they say most people doing great are probably not members of forums like this and that forums like this give a skewed sense of what is really going on.  I believe one compared it to people who write complaints on store websites--you mostly get the people who were dissatisfied with a product and not the people who loved the product.  Another example was political protests-- you usually only see people angry with government and not people happy with the government.  Their words, not mine. 

So, what is the consensus here?  Do many here believe there is a high probability that most with HIV will run into those health issues regardless of starting on those pre-HAART drugs or starting today?  Since HAART hasn't been around all that long, how are experts so certain about lifespan and quality of life living with HIV and the newer meds?  They are going off of studies and mathematical models, and I sucked at statistics, math, and chemistry.  So, as I said, I keep my responses to my own experiences and how I'm not much further ahead of them in coming to terms with HIV and educating myself about HIV and meds.   

Offline sam66

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #12 on: December 04, 2010, 10:03:29 AM »
       This is an excellent Thread
 
                               Well done Jkinatl2 ,Nychope1, Miss P some excellent points very well made. Apart from a couple of posts from members who have totally seemed to have missed the point. To me it's a discussion on living with HIV today, and possibly applying more to those have been relatively recently diagnosed,  ( I say that because LTS may have to deal with long term affects of the virus and or the longterm side effects of Meds, and I can't comment on those issues )
                    
                               May be this is a good place to give a bit of background information on the time of my diagnosis. At the time of my diagnosis I knew very little about the virus, no more than average lay person I guess. Through my own stupidity I believed this was a problem for African and Gay communities ( I blame the media, even now Pope only advocates condom use to homosexual prostitutes, Outrageous !) Why cant the media accept HIV does not discriminate on race gender or sexuality.

                               My first meeting with my Doctor lasted about an hour, It was probably the most important meeting I had with him. He is an African Doctor who was treating Aids patients in Africa from the start, in early 80's , he told me about the days no ARV's very little other kinds of meds only kind words to treat his patients.( I'm sure you can picture the situation) Now he works in London. He has been treating HIV for 30 years, so I take very seriously any thing he has to say about it.
                                He said this virus  can be deadly but modern meds are very good at keeping the VL down, and yes they do have side effects, but  less than meds of 10 years ago. Any way when I finally managed to stop crying it was the last 30 minunites of the conversation that was most interesting, he said in his experience, patients who responded to treatment and coped best (with the virus and  meds ) were those who had a positive attitude and less susceptible to stress and anxiety .  
                                 I say this because to me the underline message of Nyhope's posts are try to stay   with a positive state of mind, I think he ( sorry if you are a she Nyhope ) is absolutely correct and admire his perseverance. Yes HIV is nasty but there are other nasty things people have to deal with all the time. Don't try to tell a kid dying of leukemia how bad your HIV is.
                                  I accept to some it may be very difficult to controll stress and anxiety, but like working out to improve ones fitness, I believe you can train yourself to controll these emotions. First of all accept you have the virus, get over the anger, try to move on. Then deal with each issue as it arises, there are many experts and LTS here who give good advice on many issues one may have to deal with, I thank them for that
 
                          
These are very honest posts, and as much of a downer as this thread seems to be,  ;)
          I disagree with you Lucky,  I dont think thread is at all a downer , I think its quite uplifting, people are saying it as they see it . best way.

      
.  But one can only manage this anxiety with knowledge, not burying ones head in the sand.
     
    So very true Miss P, great advice.

            As a final thought , when ever I feel a bit down about the whole HIV thing I say this to my self,
            Wether HIV +ve or not
            Wether on meds or not
            Prince or Pauper

            Oneday you gonna meet your maker
            ( OK this might not work you )
« Last Edit: December 04, 2010, 12:30:46 PM by sam66 »
december 2007 diagnosed +ve ,

nychope1

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #13 on: December 04, 2010, 12:51:41 PM »
I like the way you think, Sam. Play it again  8)

btw - I'm all man.
« Last Edit: December 04, 2010, 12:55:25 PM by nychope1 »

Offline mecch

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #14 on: December 04, 2010, 01:19:15 PM »
jkinatl2
I do not think it is very polite to start a thread by quoting another member's words from a different thread. If you want to express your opinion, just do so.  Nobody says you can't feel or believe what you wish.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #15 on: December 04, 2010, 01:29:59 PM »
jkinatl2
I do not think it is very polite to start a thread by quoting another member's words from a different thread. If you want to express your opinion, just do so.  Nobody says you can't feel or believe what you wish.

Mecch, I thought it was extremely polite to address the comments, plural, in a thread in the appropriate forum rather than derailing a thread in another forum in which my participation was explicitly not desired.

Moreover, I am not on this forum to be polite regarding HIV, nor do I answer to you regarding my level of civility. I urge you to report my posts that you find offensive, and place me on ignore if you cannot tolerate my tone.

Sad thing about being polite is that it took me five minutes and almost a hundred words to convey what ten seconds and a mere two would have accomplished.


"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

nychope1

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #16 on: December 04, 2010, 01:41:35 PM »
I think this thread should be renamed. It is disrespectful and misleading to say the least.

How does one make a formal request to the moderators?

Offline mecch

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #17 on: December 04, 2010, 01:42:17 PM »
This seems to be a topic that really pushes your buttons.  

Many many people living with HIV are very optimistic about HAART.  So you didn't need to hold out someone specific.  Just state you opinion and let others react to it as they may.  That's all I'm saying.

You can have whatever agenda and politics you want about HIV.

I don't see any reason to report your post as offensive.  I think its not the best way to put forward your personal position on these issues.  

As for the issue itself, I don't think its at all helpful to argue for more worry about the long-term prognosis and consequences of HAART.  Its the best we have for the moment and its pretty good.  Its the glass half full or half empty question.  Both are correct, but one is kinder on the system.  Optimism and peace of mind and a feeling of security are very very important for healthy living.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

nychope1

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #18 on: December 04, 2010, 01:49:05 PM »
Dear Moderators..

For the sake of civility and to avoid a precedence of starting threads by using out of context qoutes by other members I respectfully ask that this thread by renamed.

Thank you...

Online Miss Philicia

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #19 on: December 04, 2010, 01:50:16 PM »
jebus
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Offline Dachshund

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #20 on: December 04, 2010, 01:55:35 PM »
Dear Moderators..

For the sake of civility and to avoid a precedence of starting threads by using out of context qoutes by other members I respectfully ask that this thread by renamed.

Thank you...
 

Shouldn't that apply to your signature?

Offline sam66

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #21 on: December 04, 2010, 02:19:40 PM »
               I think may be you are over reacting slightly Jkinatl2

               Mecch made fair and valid point, I don't think it was rude or impolite.

Many many people living with HIV are very optimistic about HAART.  So you didn't need to hold out someone specific.  Just state you opinion and let others react to it as they may.  That's all I'm saying.

   
                   Agreed
december 2007 diagnosed +ve ,

Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #22 on: December 04, 2010, 02:29:18 PM »
               I think may be you are over reacting slightly Jkinatl2

               Mecch made fair and valid point, I don't think it was rude or impolite.
 
   
                   Agreed

I am absolutely not overreacting to a mindset that directly causes complacency and leads to new infections.

Trust me, when I observe fallacies in HIV ideology, I shall address them openly. They do indeed push my buttons, as they directly lead to complacency and new infections.

The mindset is perilously close to AIDS denialism, which does indeed push my buttons as it has killed many thousands of people.

I believe that this conversation is very important, especially considering the number of similar posts by several newly diagnosed members reflecting the same mindset.

Insofar as passive-aggressive posting is concerned, I respectfully submit the following signature line:

Quote
How's that hopey, no big dealy thing workin' for ya?

Perhaps a solution is to start an HIV site, for people who have not, and if my understanding of your posting history is correct, will not develop AIDS. and no, I am not being snarky. It simply seems that we are at an impasse as to what this site should address, and how.

In the meantime, I will continue my mantra of understanding and respecting the power of HIV and the meds used to treat it, while at the same time remaining optimistic that current and future therapies/developments will continue to save and preserve lives.

The logic in these childish rebuttals fails when people assume that I am not optimistic about HAART. I have never said, nor intimated that.  What I am not, is complacent about this disease, nor am I in denial about it's destructive power, or the potency of the drugs used to treat it.

I have absolutely no intention of altering my style of posting, and until medical science proves that HIV is No Big Deal, and the meds used to treat it are no more powerful than children's vitamins, I shall continue to address the fallacies where and when I find them.

It is a fairly large site, and an even larger internet. Feel free to ignore me if you do not like my tone or my opinions. It really is fairly easy to accomplish.

"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 Ann

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #23 on: December 04, 2010, 02:38:05 PM »
Dear Moderators..

For the sake of civility and to avoid a precedence of starting threads by using out of context qoutes by other members I respectfully ask that this thread by renamed.

Thank you...

Nyc, JK wasn't actually using a direct quote. You don't own that phrase, nor did you coin that phrase. I have heard it used many times, by many people, in the context of hiv infection in today's world - at least in the wealthier nations of the world.


 
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline woodshere

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #24 on: December 04, 2010, 02:41:17 PM »
Dear Moderators..

For the sake of civility and to avoid a precedence of starting threads by using out of context qoutes by other members I respectfully ask that this thread by renamed.

Thank you...

Are you really serious?  This thread had a very good discussion going on and then u enter with a post like this.  WHY?  You wrote yesterday in one of your posts that you coined a phrase being used alot here now.  I assume you are referring to "no big deal".  If you search the forums you will find that no big deal has a very lengthy history.  As a matter of fact one of the first threads I ever started was entitled "Whats the Big Deal with taking Meds" or something like that.  It was interesting to see where I was then and where I am now 4 Ĺ yrs later.  The intent of that thread  wasnít to say meds were no big deal but more so for me to understand why others thought it was, because for me I was having not problems.  The thing that struck me was the amount of civility that was present then that seems to have disappeared
"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

nychope1

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #25 on: December 04, 2010, 02:47:06 PM »
Quote by jkinati2: "I have absolutely no intention of altering my style of posting, and until medical science proves that HIV is No Big Deal, and the meds used to treat it are no more powerful than children's vitamins, I shall continue to address the fallacies where and when I find them."

To quote a former President;  "There he goes again"

Qoute by Ann "Nyc, JK wasn't actually using a direct quote. You don't own that phrase, nor did you coin that phrase. I have heard it used many times, by many people, in the context of hiv infection in today's world - at least in the wealthier nations of the world."

Ah, Ann, you moderators obviously have a soft spot for this fella. You are an intelligent person as are most folks here so your statement is beneath you I think. You know very well as most here who have been keeping up JKinati2 was directly quoting me. Be that as it may. Your comment and his speak for themselves.



Offline Jeff G

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #26 on: December 04, 2010, 02:52:00 PM »
I think its possible to give hope and support but still be truthful and realistic at the same time .

Saying starting meds is no big deal is just not true if you are dealing with the facts . Jk brought up some excellent points ... My doctors think atripla is responsible for me developing type 2 diabetes and sever lipid issue . They switched my regimen to Isentress and truvada and despite the fact I have no resistance issues the meds are no longer working . I'm wracking up a huge viral load now as well as huge copays for test to straighten out this mess .

I didn't have the heart to go into a thread some one started seeking support because its time to start meds and be anything but supportive but the truth is it is a big deal .

lots of people wont face the problems and side effects that I have faced ... and that my friends is true hope and support .

« Last Edit: December 04, 2010, 02:53:55 PM by jg1962 »

Offline woodshere

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #27 on: December 04, 2010, 02:55:27 PM »
I think its possible to give hope and support but still be truthful and realistic at the same time .
Saying starting meds is no big deal is just not true if you are dealing with the facts . Jk brought up some excellent points ... My doctors think atripla is responsible for me developing type 2 diabetes and sever lipid issue . They switched my regimen to Isentress and truvada and despite the fact I have no resistance issues the meds are no longer working . I'm wracking up a huge viral load now as well as huge copays for test to straighten out this mess .
I didn't have the heart to go into a thread some one started seeking support because its time to start meds and be anything but supportive but the truth is it is a big deal .
lots of people wont face the problems and side effects that I have faced ... and that my friends is true hope and support .

A true reality check, thanks for sharing!

"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 Ann

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #28 on: December 04, 2010, 02:56:08 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.
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #29 on: December 04, 2010, 03:01:07 PM »
Nyc, JK wasn't actually using a direct quote. You don't own that phrase, nor did you coin that phrase. I have heard it used many times, by many people, in the context of hiv infection in today's world - at least in the wealthier nations of the world.


 

And even in the wealthier nations, especially the USA without Universal healthcare, this mindset is troubling. Many people are testing positive well in their formative years, from a financial point of view. People under 30, who might not have a career in which they intend (or desire) to remain for the rest of their working lives, people without health insurance (or whose insurance is insufficient to deal with an indefinite thousand dollar a month medical treatment).

People who are naive enough to think that their employers will not decipher the cause of a huge spike in the company rates, and will not take measures to eliminate that threat to their overall healthcare costs. People who actually think that employers would willingly hire and insure someone whose healthcare costs will negatively impact their organization (this is particularly true in small companies, which are filled with largely younger employees).

ADAP is no walk in the park. It is a time and energy consuming system to acquire medication. It is also underfunded to the point of waiting lists, and has been for several years now with no real upswing in sight. Moreover, ASO's are struggling to keep and replace case managers, who are often LTS' themselves. These people are aging out, and in some cases, dying out - yes, of AIDS.

Many ASO's are branching out to treat cancer patients and other segments of the population, and are being staffed with incresingly undereducated and underinformed personnel. The gay community itself has once again begun to see AIDS as a disease of the Olds, and the structures on which which young, recently diagnosed people depend are crumbling.

When this site simply tells Klub Kids to throw a Truvada in with their meth and bareback all they want, I will respectfully withdraw from the site, AIDS being officially over.

I might interject that one of the CNS effects of Atripla is sometimes hostility and rage, as well as depression. I will try to be mindful of the various elements that might lurk behind what appear to be simple trolling or flame-baiting. Often people are in pain they cannot articulate, and sometimes i fail to peer behind the words and practice compassion. I will  not,  however, sacrifice facts in that endeavor. I leave that effort to greater, more noble souls than mine.


"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 Theyer

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #30 on: December 04, 2010, 03:01:42 PM »
I am not surprised by the tenions being played out in these,very useful posts.  

I think there is a huge tension in the current medical response to HIV/AIDS , there are plenty off excellent reasons to get people to test and know there status, I think that with the unquestionable progress in treatment coupled with the benefits off testing has lead to only the really glossy easy side off HIV/aids  being concentrated on.

With the lessening off safe sex education added to this mix no wonder we are where we are.

The drugs available reduce the odds on developing OI,s they do not not eliminate it.

They do damage to HIV and the body.

The drugs available have not been around long enough to be able to know there real long term effects.

After 25 years off this I know I will have to deal with things I have not considered fully yet. That's about the one thing that has remained constant that HIV it is a complicated deadly virus with various stages. We are still a long way off Knowing all.
t
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline mecch

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #31 on: December 04, 2010, 03:01:54 PM »
Trust me, when I observe fallacies in HIV ideology, I shall address them openly. They do indeed push my buttons, as they directly lead to complacency and new infections.

The mindset is perilously close to AIDS denialism, which does indeed push my buttons as it has killed many thousands of people.


You have a good vocabulary but you sound like a 19 yo critical studies major.  

Being thankful for HAART and optimistic about a long life living with HIV has nothing whatever to do with AIDS denialism.  And maybe not with new infections. Because really most HIV- people are afraid of AIDS and don't want it, even it they hear HIV is a "chronic condition" and hear good news from their HIV+ friends or the media.  

Sounds to me at the end of the day you have a lot of fear.  Just don't set up a boogyman opponent.  I'll debate you if you want but don't make others debate you if they don't feel inclined.  
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #32 on: December 04, 2010, 03:04:58 PM »
You have a good vocabulary but you sound like a 19 yo critical studies major. 

Being thankful for HAART and optimistic about a long life living with HIV has nothing whatever to do with AIDS denialism.  And maybe not with new infections. Because really most HIV- people are afraid of AIDS and don't want it, even it they hear HIV is a "chronic condition" and here good news from their HIV+ friends. 

Sounds to me at the end of the day you have a lot of fear.  Just don't set up a boogyman opponent.  I'll debate you if you want but don't make others debate you if they don't feel inclined. 

If you have nothing germane to add to the discussion, then please refrain from personal attacks is you can. I have zero interest in debating you or anyone else on this site. I only correct misconceptions and factual errors when I encounter them.

I am very optimistic about living a long life, and thrilled about the success of HAART. I have never indicated otherwise.

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.

"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 Matty the Damned

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #33 on: December 04, 2010, 03:07:19 PM »
I am absolutely not overreacting to a mindset that directly causes complacency and leads to new infections.

Trust me, when I observe fallacies in HIV ideology, I shall address them openly. They do indeed push my buttons, as they directly lead to complacency and new infections.

The mindset is perilously close to AIDS denialism, which does indeed push my buttons as it has killed many thousands of people.

I believe that this conversation is very important, especially considering the number of similar posts by several newly diagnosed members reflecting the same mindset.

Insofar as passive-aggressive posting is concerned, I respectfully submit the following signature line:

Perhaps a solution is to start an HIV site, for people who have not, and if my understanding of your posting history is correct, will not develop AIDS. and no, I am not being snarky. It simply seems that we are at an impasse as to what this site should address, and how.

In the meantime, I will continue my mantra of understanding and respecting the power of HIV and the meds used to treat it, while at the same time remaining optimistic that current and future therapies/developments will continue to save and preserve lives.

The logic in these childish rebuttals fails when people assume that I am not optimistic about HAART. I have never said, nor intimated that.  What I am not, is complacent about this disease, nor am I in denial about it's destructive power, or the potency of the drugs used to treat it.

I have absolutely no intention of altering my style of posting, and until medical science proves that HIV is No Big Deal, and the meds used to treat it are no more powerful than children's vitamins, I shall continue to address the fallacies where and when I find them.

It is a fairly large site, and an even larger internet. Feel free to ignore me if you do not like my tone or my opinions. It really is fairly easy to accomplish.


Just let me quote this for epic truth.

JK is spot on with this stuff. Some people get their feathers ruffled when the unpalatable realities of HIV are pointed out. Full points to you Jonathan for saying (once again) that what needs to be said.

As for the malarkey from Meech and Sam about this thread being "inappropriate". Matty the Damned sez take a pill already, the pair of you.

This seems to be a topic that really pushes your buttons. 

Many many people living with HIV are very optimistic about HAART.  So you didn't need to hold out someone specific.  Just state you opinion and let others react to it as they may.  That's all I'm saying.

You can have whatever agenda and politics you want about HIV.

I don't see any reason to report your post as offensive.  I think its not the best way to put forward your personal position on these issues. 

As for the issue itself, I don't think its at all helpful to argue for more worry about the long-term prognosis and consequences of HAART.  Its the best we have for the moment and its pretty good.  Its the glass half full or half empty question.  Both are correct, but one is kinder on the system.  Optimism and peace of mind and a feeling of security are very very important for healthy living.

Seriously Meechie, JK has shown impeccable forums ettiquette with this. If he had continued the conversation in the other thread I have no doubt you'd be racing around with your undies on your head shrieking about hijacking and demanding we get back on topic.

You have a good vocabulary but you sound like a 19 yo critical studies major. 

Being thankful for HAART and optimistic about a long life living with HIV has nothing whatever to do with AIDS denialism.  And maybe not with new infections. Because really most HIV- people are afraid of AIDS and don't want it, even it they hear HIV is a "chronic condition" and hear good news from their HIV+ friends or the media. 

Sounds to me at the end of the day you have a lot of fear.  Just don't set up a boogyman opponent.  I'll debate you if you want but don't make others debate you if they don't feel inclined. 

Meech, let it go. You couldn't debate your way out of a Methodist Ladies Auxiliary meeting. JK will wipe the floor with you.

MtD

Offline Dachshund

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #34 on: December 04, 2010, 03:13:49 PM »
You have a good vocabulary but you sound like a 19 yo critical studies major.  

Being thankful for HAART and optimistic about a long life living with HIV has nothing whatever to do with AIDS denialism.  And maybe not with new infections. Because really most HIV- people are afraid of AIDS and don't want it, even it they hear HIV is a "chronic condition" and hear good news from their HIV+ friends or the media.  

Sounds to me at the end of the day you have a lot of fear.  Just don't set up a boogyman opponent.  I'll debate you if you want but don't make others debate you if they don't feel inclined.  

So let me get this straight. You can say what you want to say, but Jonathan can't. At the end of the day you come off sanctimonious. I'll be glad to debate you if you want. God I can't believe you're in control of impressionable youth.

Offline phildinftlaudy

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #35 on: December 04, 2010, 03:20:58 PM »
You have a good vocabulary but you sound like a 19 yo critical studies major. 

I didn't think this comment was called for - just because it might not fit into the category of "name calling," it is still meant to degrade someone's character.  I know that you wouldn't appreciate it if this was done to you - so, you make it very difficult for you to call foul about what others may say when you seem to think that it is okay for you to attempt to "slam" a person.
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 wtfimpoz

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #36 on: December 04, 2010, 03:32:46 PM »
I'm curious what exactly the purpose of this post was.  If it was to warn newbies of "things to come", I wonder why exactly one would want to be such a Cassandra.  For a lot of people, a little bit of denial makes life a lot easier.  In a case like HIV, where stress and outlook probably influence long term consequences, a little bit of denial is probably very useful.  There are obviously some rather horiffic long term consequences to HIV.  Those of us who are in a mindset to realize and address this do so with regularity.  Make no mistake though, newbies who understand this aren't going to give anyone the "I'm doing so much better now that I've found aidsmeds and been told I'll live a normal lifespan" line which is so positively received on here.  No normal human being who understands the long term implications of this virus is going to be anything short of despondent upon word of their infection.  People who "get it" are going to react as I have...badly.  The others will accept what this virus means when they're ready, or when they have to.  At this point, you're not doing them any favors by letting them know what their futures might hold.   

If this post was to make us aware of the need for more activism and more research, I wonder where the call to arms was.     

Was it to compel us to balance the long term consequences of HIV chemotherapy against its benefts?, I honestly don't see the nuance in the post that I see from others who've posted against the "hit it early, hit it hard" mentality.

Was it because you're afraid that people will underestimate the problems that come with HIV, and in doing so be more likely to become infected?  Then start telling the "Am I Infected" crowd to stop playing with fire, and leave the issue alone in a forum where most participants are already infected.

Instead, it looks like this was another "you'll learn" post.  As in "You'll learn that all the nice things your doctors told you about HIV are a lie, and your life is going to be shit.  You'll learn that this virus fucks you up, and that all the beautiful poz talking heads are lies.  You'll learn that Regan Hoffman and Jack Mackeroth and Mark S. King are accidents of luck as much as benficiaries of medical science.  You'll learn MY pain".  Absent a constructive reason behind it, this "you'll learn" mentality does nothing to improve the lives of its intended audience, hence it has no redeeming value to anyone but yourself.  It might make you feel better to  cackle like the wicked witch,  "HIV will get you, my pretty", but it doesn't actually help.  In fact, it hurts.

And it hurts those who are least able to handle it.  It hurts those who need hope NOW more than at any time in their life.  It hurts those who have nowhere else to turn.  It hurts those who are scared, and clearly incapable of dealing with what this virus means.  Thats a huge price for them to pay so that you can offload your own feelings.  Its not "a well rounded opinion that needs to be heard", its a selfish expression.



« Last Edit: December 04, 2010, 03:38:02 PM by wtfimpoz »
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline sam66

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #37 on: December 04, 2010, 03:34:43 PM »
   OK Jkinat
              Again you make some very good points regarding HIV, yes it's a nasty terrible virus, I dont think any of us deny that or underestimate it.
         Surely we are discussing best attitude to have with our fight against it. Of course its our responsibility to make sure we do not pass it on to another person.
      
          I do not get the impression NYC ,  Mecch, or Miss P or anybody else here is advocating unprotected free sex here.
                And of course we need better meds or a cure, that's why as i said on a previous post we must keep fighting.
december 2007 diagnosed +ve ,

Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #38 on: December 04, 2010, 03:48:46 PM »
I'm curious what exactly the purpose of this post was. 

Interesting that you asked a question, then answered it for me and then judged it's worth by that answer.

I wrote the post in response to a growing and incorrect notion that HIV is not a serious illness. And you will note that I did not post this in Just Tested Positive. I posted it here. A recent post regarding this very notion was also posted here, in Living With. It was not aimed at people who, as you put it, are unable to handle the information. Had I intended that, I would have posted it in the forum for the Newly Diagnosed. And I imagine that it would have been moved to this forum if asked (and possibly even if not).

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.

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.

I have said this over and over on this thread. I really cannot communicate any more directly than I already have as to why I started this thread and why I feel it is important to address. If you do not understand by now why I have a vested interest in this subject, then I am sorry that I have clearly failed to communicate to you.

This forum is Living With HIV. Not Living In Spite of HIV or Living As If There Is No HIV or even Living In Opposition To HIV. Mainly because those mindsets killed off most of the people who subscribed to them.

I think we do newly diagnosed people a great disservice by withholding the facts about the virus. Moreover, we create shame and guilt for those that cannot tolerate meds, or are not adherent, or get sick despite their efforts.

"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 Matty the Damned

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #39 on: December 04, 2010, 03:52:33 PM »
I'm curious what exactly the purpose of this post was.  If it was to warn newbies of "things to come", I wonder why exactly one would want to be such a Cassandra.  For a lot of people, a little bit of denial makes life a lot easier.  In a case like HIV, where stress and outlook probably influence long term consequences, a little bit of denial is probably very useful.  There are obviously some rather horiffic long term consequences to HIV.  Those of us who are in a mindset to realize and address this do so with regularity.  Make no mistake though, newbies who understand this aren't going to give anyone the "I'm doing so much better now that I've found aidsmeds and been told I'll live a normal lifespan" line which is so positively received on here.  No normal human being who understands the long term implications of this virus is going to be anything short of despondent upon word of their infection.  People who "get it" are going to react as I have...badly.  The others will accept what this virus means when they're ready, or when they have to.  At this point, you're not doing them any favors by letting them know what their futures might hold.   

If this post was to make us aware of the need for more activism and more research, I wonder where the call to arms was.     

Was it to compel us to balance the long term consequences of HIV chemotherapy against its benefts?, I honestly don't see the nuance in the post that I see from others who've posted against the "hit it early, hit it hard" mentality.

Was it because you're afraid that people will underestimate the problems that come with HIV, and in doing so be more likely to become infected?  Then start telling the "Am I Infected" crowd to stop playing with fire, and leave the issue alone in a forum where most participants are already infected.

Instead, it looks like this was another "you'll learn" post.  As in "You'll learn that all the nice things your doctors told you about HIV are a lie, and your life is going to be shit.  You'll learn that this virus fucks you up, and that all the beautiful poz talking heads are lies.  You'll learn that Regan Hoffman and Jack Mackeroth and Mark S. King are accidents of luck as much as benficiaries of medical science.  You'll learn MY pain".  Absent a constructive reason behind it, this "you'll learn" mentality does nothing to improve the lives of its intended audience, hence it has no redeeming value to anyone but yourself.  It might make you feel better to  cackle like the wicked witch,  "HIV will get you, my pretty", but it doesn't actually help.  In fact, it hurts.

And it hurts those who are least able to handle it.  It hurts those who need hope NOW more than at any time in their life.  It hurts those who have nowhere else to turn.  It hurts those who are scared, and clearly incapable of dealing with what this virus means.  Thats a huge price for them to pay so that you can offload your own feelings.  Its not "a well rounded opinion that needs to be heard", its a selfish expression.

Burn, strawman burn!

MtD

Offline mecch

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #40 on: December 04, 2010, 03:52:57 PM »
I didn't think this comment was called for - just because it might not fit into the category of "name calling," it is still meant to degrade someone's character.  I know that you wouldn't appreciate it if this was done to you - so, you make it very difficult for you to call foul about what others may say when you seem to think that it is okay for you to attempt to "slam" a person.

Ha ha. Let's see who's got the guns to debate this more or less cleanly.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline phildinftlaudy

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #41 on: December 04, 2010, 03:55:24 PM »
Ha ha. Let's see who's got the guns to debate this more or less cleanly.

Those with "guns" usually don't tell others

I prefer the ones with a silencer.

It's called humility.
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 ElZorro

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #42 on: December 04, 2010, 03:55:45 PM »
Very well said, WTF.

My uncle, my father's youngest brother dropped dead at the age of 52 last year. About a month after his doctor told him his physical was "perfect". Apparently some sort of aneurism developed. He was a straight, non-smoker, non-drinker, non-drug abuser in good health. Now, he's six feet under.

We're all gonna die. That's an absolute fact. I guess we could start a fallacy thread about that, too.

To continuously remind people of the negative that might happen while at the same time strenously denying the pozitive that also might happen seems a bit ridiculous to me. I try very hard to understand why anyone would choose to be so absolutely negative while trying to masquerade it as absolute reality.  

Some of us are going to die with HIV with CD4 counts over 1000 because some little old lady in Florida forgot to look before she changed lanes.

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?  :-\
« Last Edit: December 04, 2010, 03:57:24 PM by ElZorro »

Offline Dachshund

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #43 on: December 04, 2010, 03:56:01 PM »
Ha ha. Let's see who's got the guns to debate this more or less cleanly.


You're shooting blanks Mary.

Offline mecch

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #44 on: December 04, 2010, 03:57:28 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.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Online Miss Philicia

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #45 on: December 04, 2010, 03:57:35 PM »
There are now a dozen people viewing this thread...
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Offline Dachshund

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #46 on: December 04, 2010, 03:58:10 PM »
Very well said, WTF.

My uncle, my father's youngest brother dropped dead at the age of 52 last year. About a month after his doctor told him his physical was "perfect". Apparently some sort of aneurism developed. He was a straight, non-smoker, non-drinker, non-drug abuser in good health. Now, he's six feet under.

We're all gonna die. That's an absolute fact. I guess we could start a fallacy thread about that, too.

To continuously remind people of the negative that might happen while at the same time to strenously denying the pozitive that also might happen seems a bit ridiculous to me. I try very hard to understand why anyone would choose to be so absolutely negative while trying to masquerade it as absolute reality.  

Some of us are going to die with HIV with CD4 counts over 1000 because some little old lady in Florida forgot to look before she changed lanes.

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?  :-\

Why do you keep bringing it up?

Offline Matty the Damned

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #47 on: December 04, 2010, 03:59:34 PM »
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.

Stickler for the correctiness of the Queen's English that you are Meechie, I know you won't mind me pointing out that it's "hear the arguments." :)

MtD

Offline skeebo1969

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #48 on: December 04, 2010, 04:00:17 PM »
There are now a dozen people viewing this thread...

14 if you include Rodney.
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Offline ElZorro

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #49 on: December 04, 2010, 04:00:23 PM »
Why do you keep bringing it up?

I don't see where I brought it up?  I was just indicating to WTF that I supported his post.

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.

Online 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.
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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

Online 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.
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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
"The object is to be a well patient, not a good patient"

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

Welcome Thread

Offline 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 »

Online 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.

Offline 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

Welcome Thread

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

Offline 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

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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

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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 ,

Online 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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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

Online 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!
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Offline Jeff G

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #100 on: December 07, 2010, 12:58:07 PM »
My doctors asked me all the questions about depression and sleep problems and still put me on Atripla even though I was already having issues .

I'm not doing well on Isentress and must find a new combo to take , despite my CNS , lipid , diabetes and over all crazies in the head I will probably do as my doctors advise and go back on Atripla by the end of this week . I took it for many years and dealt with the side effects so I guess I will have to do it again .

This is one of the reasons I jumped into this thread , starting or changing meds can be complicated ... and in my case expensive .  

Offline woodshere

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #101 on: December 07, 2010, 01:20:32 PM »
Before I started meds shortly after being diagnosed my dr and I discussed various regiments including the use of Sustiva (Atripla was a few months away from being approved).  The number one reason I chose not to use it was what I felt were the very strong possibilities, with my history of depression, the mental side effects.  I am very fortunate to have had an initial dr that really explained each drug and was willing to listen to my concerns and work with me in deciding my meds.
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Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #102 on: December 07, 2010, 02:40:45 PM »
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.

To be totally fair to my doctor (who was, as I mentioned in another thread, a bit of a tool) at the time, Sustiva was brand (ish) new, and the CNS issues, if they were mentioned AT ALL in the literature, were so buried that no one knew their extent.  It was only by telling other people about what was happening that a light bulb went off. Even then, my doc was so dismissive he would rather give me enough Welbutrin to cause a seizure, throw Klonopin at the resulting anxiety, than consider that an HIV drug could do that.

I have no idea what he thinks now or what his protocol is, if anything. But I do know that I was not asked about pre-existing depressive or anxiety issues since, which is a little scary since my file is a foot thick and I am pretty sure it gathers dust unless it is being written in, on my appointment days.

I know that disclosing studies is important. But I also know it comes at a price. And, well, I have paid it a time of two here, and am a little gun-shy about doing it routinely. I agree that I shoot myself in the foot by being a hypocrite regarding the disclosing of information (even personal information) on a site specifically created for such. But to some folks, any weapon in a war of words, and my intellectual.cognitive credibility is about all the currency I have.

We all know it's not my spelling. Or brevity.


 *modified for typing with paws.
« Last Edit: December 07, 2010, 02:43:14 PM by jkinatl2 »
"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."

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Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #103 on: December 07, 2010, 02:47:24 PM »
     
              Jkinaltl
                        I assume you are not on Atripla or Sustiva any more

I am not. Currently on Isentress, Trudava, Prezista, Norvir. Dapsone as a chaser.  And though not achieving anything close to optimal benefits thanks to all the resistance issues, I am one of the lucky ones whose virus has been damaged enough by my flinging medical poop at it that, so long as Wild Strain does not run unopposed, it seems to be doing a much poorer job of finishing me off.

There is a study supporting this, but I just doin't have a Google in me right now :)

"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 elf

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #104 on: December 08, 2010, 01:49:43 AM »
I'm on Kaletra+Kivexa/Epzicom combo which is perfect if you fancy a heart attack.  ::)
My blood lypids are always skyhigh even with Omacor/Lovaza. I'm 28 but my health feels more like 56...
« Last Edit: December 08, 2010, 01:52:06 AM by elf »
Let's have a Kiki!

Offline Cliff

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #105 on: December 08, 2010, 02:20:28 AM »
I'm with Matt.  My own experience and that of my close friends, is that HIV meds nowadays generally work and are generally free of significant side effects.  Not perfect, but good enough.  Enough to make being positive a bit of an afterthought (mostly). 

I understand the resistance issues many face, but for someone relatively recently diagnosed, I wouldn't be offended by the notion that it's (mostly) no big deal.  And this is coming from someone who was on Atripla for about two months, until he told the nurse he ain't taking that shit ever again.

P.S.- Why ain't the drugs in our spell check?  Now that's, a big deal.

Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #106 on: December 08, 2010, 02:51:11 AM »
I'm with Matt.  My own experience and that of my close friends, is that HIV meds nowadays generally work and are generally free of significant side effects.  Not perfect, but good enough.  Enough to make being positive a bit of an afterthought (mostly). 

I understand the resistance issues many face, but for someone relatively recently diagnosed, I wouldn't be offended by the notion that it's (mostly) no big deal.  And this is coming from someone who was on Atripla for about two months, until he told the nurse he ain't taking that shit ever again.

P.S.- Why ain't the drugs in our spell check?  Now that's, a big deal.

I always feel that I am spelling the drugs wrong, thanks tot he spell check. also, meds. Common enough, no?

And I must admit I am hesitant to embrace, in the states the status of HIV as it appears to be becoming in the UK and other places with socialist medicine.  Telling a 25 year old with no serious career notion that he must lock in to an insurance option (and a company that will insure him) for the rest of his working life, or prepare to migrate based largely on coverage, is a pretty big deal.

For a 35 or 40 year old, maybe navigating the miasma of insurance and the expectation of denial is nothing big, combining the "sticker shock" of changing/losing jobs combined with the fast-track of understanding the real, ugly underpinning of the US insurance system (not to mention ADAP, medicare, Cobra and the like) means real drug adherence issues.

And you did note that your first regimen did not work out. Many people do not have the relationship with a doctor that you do - and I suspect you might not have had the same relationship, had this been fifteen years prior to your current state of maturation :)

I know there are serious drawbacks to the UK version of healthcare. I also think that, for those diagnosed with a serious illness (especially while young) the US presents a learning curve that is pretty steep, and is indeed a big deal.

But if the consensus is indeed that it is no big deal, then why use condoms? Why disclose?

"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 mecch

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #107 on: December 08, 2010, 03:20:04 AM »

But if the consensus is indeed that it is no big deal, then why use condoms? Why disclose?


I still think you are using a bogeyman opponent.  It doesn't seem that anyone says there is a "consensus* that it is no big deal.   

This forum shows that HIV AIDS is experienced in so many many different ways. 

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

Offline Cliff

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #108 on: December 08, 2010, 03:30:53 AM »
Experiences of living with HIV will never be uniform.  For many it can be difficult.  But, equally, for others it isn't.  I'm not sure where this leads us, except that if someone were to ask me about my experiences with meds they will likely get a completely different story from your. Each person will have to decide how they will navigate their own maze.

Having said all that, and just to be clear, I didn't find living with HIV in the US to be anymore difficult than living with it in the UK.  That's not to say this isn't the case for everyone, but it is my experience.

Mecch- You beat me to it!  Damn you!

Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #109 on: December 08, 2010, 03:44:38 AM »
I still think you are using a bogeyman opponent.  It doesn't seem that anyone says there is a "consensus* that it is no big deal.   

This forum shows that HIV AIDS is experienced in so many many different ways. 



It is indeed a different journey for different people. But I strongly suspect that if you scratch the surface of some of the folks here who insist that it is No Big Deal you will find that they have encountered and endured some obstacles that are, actually, a Big deal.

And frankly Cliff, I am a little surprised that you would come down on the side of fifty-fifty, considering the struggles you yourself went through only a few years ago. I suppose time does indeed create a filter through which we exist.

And mecch, I am not creating anything. I was pointing out the very real and persistent struggles inherent in an HIv diagnosis that cannot be dismissed like a truant student.

I am actually amazed that you, a teacher of young people, would advocate such an idea. I am nothing BUT optimistic about treatments, present AND future. But I would never suggest to the general public that AIDS is over.

The Boogeyman is not something I have created out of whole cloth, and I have more than demonstrated my rationale for my thoughts. I am glad that you and Cliff have been wealthy enough in spirit and in financial resource to cope with your diagnosis with no real trouble. I certainly wish that I had lived in a socialist-medicine country, or had been a practicing attorney when I tested positive. It certainly would have made that transition a lot more accessible.

I urge you to tell your stories, in the Newly Diagnosed forums, and tell those who are afraid exactly why, from a biological, pharmaceutical, societal, and financial point of view that HIV is no Big deal.

Instead of popping into threads to disparage people with opinions based on some sound factual evidence, I urge the both of you to provide your own, presumably based on your own experiences and your own perspectives. By all means, show us how you represent the majority, and I the dwindling minority.

"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 mecch

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #110 on: December 08, 2010, 04:09:25 AM »
I am not in the "no big deal" camp.  Where did you get that idea?
1) I carried enormous emotional baggage from the 80's and 90's AIDS horror stories and tragedies. 2) I also agree 100% about the economic factors that need to be figured into living with HIV. 

For 1) - I had the chance to be in therapy for a year before I seroconverted, the therapy initiated however cause I was suffering from and not dealing with an HIV related nuclear blast in my life.  So have spent two more years since seroconversion working to a new way of thinking about HIV. 

For 2) Can't say I "lucked out" living in a country with universal care but do definitely see this as lucky.  (One of the reasons among many I left NY was the terrible stress of living in such a capitalistic society with no safety net.  Exciting sometimes, but it had also left scars on my soul - for example, see above - 80's and 90's horror stories. So its not a complete accident that I am in such a country.) Lucky, then - cause HIV treatment was immediate, when it was almost immediately necessary.  Paying for it doesn't stress me too much - but does of course lock me in to this life here - which I like for lots of good reasons anyway, so....

For this one person, its been an emotional/psychological and sexual challenge.  I mention also the possibility that "HIV is a gift" - though that trope seems churlish in this thread and its an equally tricky discussion.

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

Offline Cliff

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #111 on: December 08, 2010, 04:17:23 AM »
Jonathan, no one is disparaging anyone.  I don't think this needs to be a us versus them, as I have no idea where I stand.  I get, and have stated, that our experiences differ.  I get that HIV is difficult for lots of people (even more so, outside of the Western world).  But my experience and that of my friends is that the meds (my original point) largely work for those without significant resistance issues.

I'm not sure what struggles you are referring to and I'm not a practicing attorney. I'd rather we avoid making this personal.

Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #112 on: December 08, 2010, 04:22:28 AM »
HIV as a gift is a difficult conversation, granted. I understand the mind set, but agree that this is a topic for another thread. And I thank  you for being forthcoming with your story.

Many factors go into determining the lay of the land where HIV is concerned. And while I am glad that some of us have had the foresight or the happenstance to find ourselves with the right regimen, paid for with the right resources, given by the right doctors at the right time, I cannot possibly believe that these very important things can happen often enough to give a fifty percent chance of total success.

And of course, there are the variables of mental health, both in terms of services available and services needed (with underlying self esteem issues, depression, bipolar and substance abuse issues) that happen to manifest and resolve themselves in a timely manner.

In a perfect world, HIV is no big deal. But we are not perfect people, and we live, many of us, in different worlds. Seems like you got out of the US in time to resolve many of your problems before diagnosis. I submit that the state of health care in the US is such that people do not do so in that order - that diagnosis comes first, and determining/resolving underlying issues comes later, if at all. And in the meantime, as I am sure Cliff can attest, the first round of treatment is sometimes ill-advised, given a psychological history that often remains undefined until after the fact.

I re-submit that the assertion that this virus is easily controlled and that the surrounding factors are universally supportive is, at best, a flawed assumption. I further submit that it is dangerous in that is advocates complacency and a complicity insofar as new infections are concerned.

We are so very fortunate to be alive during this time of amazing scientific breakthrough. Declaring HIV as "No Big Deal" is a disservice to our fellow newly infected brothers and sisters, and a further disservice to a community already heading towards another spike in infections.

It remains disturbing that people who should know better, who have seen evidence to know better, would advocate such disinformation. I certainly hope that you, along with others, continue to stress the seriousness of this pandemic, even as we lift our positive brethren with the realistic hope of controlling the illness.

"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 edfu

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #113 on: December 08, 2010, 04:44:43 AM »
We are so very fortunate to be alive during this time of amazing scientific breakthrough. Declaring HIV as "No Big Deal" is a disservice to our fellow newly infected brothers and sisters, and a further disservice to a community already heading towards another spike in infections.

It is also a disservice to those who have been saved by HAART but are now beginning to see the ramifications of long-time (and, in some cases, relatively brief) HIV infection and/or antiretroviral use. There has been much recent (but only recent) observation and interest in the hastening of the aging process among HIV-positives:  brain fog, neurocognitive difficulties, cardiovascular problems, bone problems, co-morbidities and cancers (lung, liver, anal, lymphoma, etc.).  We may have been saved from the early epidemic's opportunistic infections, but it is possible that our 30-, 40-, 50-, and 60-year-old bodies are succumbing to the medical  depredations of 80-year-olds.   And that IS a big deal.
« Last Edit: December 08, 2010, 04:48:49 AM by edfu »
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

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Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #114 on: December 08, 2010, 04:58:01 AM »
Jonathan, no one is disparaging anyone.  I don't think this needs to be a us versus them, as I have no idea where I stand.  I get, and have stated, that our experiences differ.  I get that HIV is difficult for lots of people (even more so, outside of the Western world).  But my experience and that of my friends is that the meds (my original point) largely work for those without significant resistance issues.

I'm not sure what struggles you are referring to and I'm not a practicing attorney. I'd rather we avoid making this personal.

I am very sorry, Cliff, but I fail to understand how this cannot be personal when you yourself state, as proof that HIV is No Big Deal, that :

<<But my experience and that of my friends is that the meds (my original point) largely work for those without significant resistance issues.>>

Are you discounting Moffie as your friend? Christine? Alan? Mark? Jody? All the others who so  often helped you through your own struggles? Are they not your friends? Are they not struggling with, and in some cases have they not passed thanks to this virus?

I am afraid that it is indeed personal when you use yourself and yout friends as examples, omitting those of us on this very site for whom it has indeed been, and continues to be a big deal. If indeed you are referencing persons diagnosed and treated past 1996, then I suggest you be more clear. because I assume these people, many of whom were instrumental in your mental and physical preparedness for these drugs, to be counted among your friends.

For those who react well to Atripla (currently the first-line drug therapy) which seems to run around fifty percent, and for those who can afford an unlimited supply of aforementioned drug (whose mileage will vary depending on the country, and in the US, on the state and circumstance) then you are right.

Which makes the caveats to your position a little heavy, no?

I am glad that HIV had been a non-issue for you. That it caused no depression, no long term self esteem issues, no stigma, nothing that would mentally disparage you from seeking proper medical treatment (and in cases here in the USA, from aggressively and persistently pursuing aforementioned treatment) as well as mental health therapy (which is harder to get than medical treatment). You have had a marvelous experience in HIV treatment, with zero substance abuse issues clouding your treatment and no lack of community support.

If your circumstances are indeed the norm, than folks like myself need to relegate themselves to the LTS forum and leave the true assessment of HIV experience to those such as yourself.

I was not aware that these were indeed your circumstances.


"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 Cliff

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #115 on: December 08, 2010, 05:14:14 AM »
If indeed you are referencing persons diagnosed and treated past 1996, then I suggest you be more clear.I

Cliff's original statement

Quote
I understand the resistance issues many face, but for someone relatively recently diagnosed, I wouldn't be offended by the notion that it's (mostly) no big deal.

xxx

Offline Delby

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #116 on: December 08, 2010, 07:29:57 AM »
Why can't newbies and as a matter of fact all people living with HIV be hopeful? I went through hell when I was diagnosed. I was suicidal and very serious about it as well. I didn't believe the Dr's when they said you can have a 'near to normal' life expectancy. I thought there assurances were cynical and sympathetic at best. But why would they lie? I have met with the most senior ID doctor in the UK, Dr Proff Gazzard. He is known round the world. I paid to have a consultation with him and asked him 'please tell me the truth' -  he said the same thing as my ID dr and so many others, that you can live a long time with it and more likely to die from something else than AIDS.

Did anyone pick up 'The Times' in the UK on world aids day. There was a whole pull out about HIV. Nearly every article, written by qualified Dr's, healthcare officials, etc all stated the same thing, that this disease has become chronic and life expectancy is near normal. There were about 10 different articles that said the same thing.

Do you honestly really think anyone on here is trying to fluff over the hardships that this disease causes people???? For g-d sake anyone that lives with it is qualified to talk about it!! We all know what it can do to us. It's horrible. But my brother is a cancer survivor and lives with diabetes type 1. Does he constantly go on about the potential of losing his limbs, going blind, dying from kidney failure?? Does he heck. Does he constantly tell people diabetes can't be lived with?? If he went onto a diabetes forum it would be full of people talking about losing their limbs, going blind. In fact if you go onto any forum for cancer, Ulcerative Colitis or any other disease, it will be full of posts from people that are suffering.

I live with UC and HIV. My life is spent in a toilet in pain, bleeding, colon full of ulcers that burn like hell every time i eat and something passes over them. I take my atripla in the morning and feel dizzy all morning like i've done today at work as i type this! I've been hospitilised with pneunomnia and other things since becoming HIV +, but that doesn't stop me from hoping that the dr's and specialists are telling the truth about this disease.

Why would you want to take the hope away from people? Your mindset is completely wrong? If you care about activism then go and become an activist but don't use this forum to tell the newly diagnosed that their life will not be worth living now they are HIV+. Are you comforting them? Supporting them??

We are not the only one's living with a complicated disease that requires treatment. As someone said..try telling someone dying of cancer that we have HIV and we're upset...they'd bite your arm off to be alive!

Yes this disease is shit...one of the shittest diseases out there..but come on, have some hope and start living your life. Read the article below. What do you think about what was written? More lies????

http://www.aidsmap.com/HIV-in-the-UK-still-cuts-13-years-off-life-expectancy-late-testing-is-the-main-reason/page/1558930/


Offline RapidRod

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #117 on: December 08, 2010, 09:53:51 AM »
Quote
Posted by: Delby 
 
Why would you want to take the hope away from people? Your mindset is completely wrong? If you care about activism then go and become an activist but don't use this forum to tell the newly diagnosed that their life will not be worth living now they are HIV+. Are you comforting them? Supporting them??

Who on this forum has ever said that?

Offline xman

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #118 on: December 08, 2010, 10:53:00 AM »
Who on this forum has ever said that?

well it's a logical conclusion of your posts.

my approach was quite pessimistic some months ago. since i have start haart i changed my mind and i'm quite hopeful. i have no side effects so far and the scientific community is now putting a big effort in finding a cure for the disease. hiv is no more the doom it was a decade ago. there are many disease a lot more disturbing than hiv. on top of the list cancer but also hcv which is curable in a small portion of patients but with a heavier treatment than hiv. a father of a friend has it and there were days he was willing to change his condition with mine!
« Last Edit: December 08, 2010, 10:56:03 AM by xman »
sign the petition launched by the aids policy project addressed to the nih aimed to increase the money needed to find the cure:

http://www.aidspolicyproject.org/petition_for_the_nih

we can make a difference and we need to fight. please support them! it doesn't cost you anything. they need it now more than ever!

Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #119 on: December 08, 2010, 11:13:23 AM »
Cliff's original statement
I understand the resistance issues many face, but for someone relatively recently diagnosed, I wouldn't be offended by the notion that it's (mostly) no big deal.

xxx

I am not offended by this at all. But I am amazed that you would make such a global statement even when newly diagnosed posters are obviously having huge trouble with first line therapy - both in terms of dealing with it from a stigma point of view, paying for it regularly, and enduring the side effects - particularly the CNS ones.

You can be as snarky as you want, but this still remains a big enough deal to take - risk- and disrupt lives. Your own experiences notwithstanding.

I have had wonderful experiences in the last decade or so with affording drugs. As have most oif my friends. Does this mean that they are affordable? Or that having medicare and Ryan White funding is an anomaly I happen to share with others? I would never be so arrogant at to suggest that my experiences are routine, or even enviable. I am certainly not "fighting" for my own perspective here.

I understand that for many of the people arguing this point, it is personal. I only wish that it were personal as regards to the subject.

"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 #120 on: December 08, 2010, 11:33:13 AM »

Why would you want to take the hope away from people?



When have I or any one here done this? When is realism the enemy of optimism? I am appalled that someone would want to turn this thread into that.

Taking this virus seriously and respecting the powerful meds used by many to control it are fundamental to surviving it. That is all.

I am sure your brother does not feel cavalier about diabetes. I am sure you do not feel cavalier about UC. Ignoring the fact that, without proper treatment, HIV is deadly is idiotic. Pretending the meds are benign for everyone is an insult to the people right here for whom they are most assuredly not. And benign or not, the meds are appallingly expensive, and require a dedication to insurance (which in the US means dedication to employment on a rather professional level) that many simply do not have, and/or cannot sustain.

These are facts. I am not trying to take hope away from anyone. I am trying to instill hope, REAL hope instead of smoke-up-your-ass hope that, if these forums are any indication, seems to always evaporate when reality sets in.

I honestly am baffled at the hostility. One used to think knowledge was power. It seems that for many, the lack of knowledge is power, and knowledge is hurtful.

And for the record, this was not posted in JUST TESTED POSITIVE. It was not aimed at hurting newbies or disparaging people. It was simply disabusing the notion of No Big Deal.

Jesus. You mention the harsh realities you and your brother have to live with, then turn around and pretend that this is nothing because you, personally, tolerate the Atripla? Half of the folks who take it don't. And the next line of therapy is more expensive AND more difficult. Hopefully in time this will change. But the reality TODAY is that it is a big deal.

A big deal that can be survived, and a life can even thrive, if the virus is controlled.But not dismissed as irrelevant. Which is the mindset I have seen here quite often recently, especially among the newly diagnosed (but obviously also among the privileged and those in nations who subsidize the meds).

Is there no meeting of the minds to be had? Should those of us who have to fight for the next month supply, who have serious side effects be shunted aside? And should newly diagnosed persons not be told these truths, which will effect many if not most of them?

I think that by being honest with the seriousness of HIV and the meds used to control it, I am offering real hope. I am aghast at how many people take Atripla, yet do not know what medications are in it. I am amazed when people find themselves unable to afford it when they have done zero research into funding and cost. Living with HIV is NOW a decades-long proposition. Knowing what these meds are, what they do, how much they cost, and what one must do in order to insure themselves is the very epitome of hope.

"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 #121 on: December 08, 2010, 11:34:44 AM »
well it's a logical conclusion of your posts.


I disagree.  And I think I have been more than eloquent to that regard.

"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 #122 on: December 08, 2010, 11:37:38 AM »

my approach was quite pessimistic some months ago. since i have start haart i changed my mind and i'm quite hopeful. i have no side effects so far and the scientific community is now putting a big effort in finding a cure for the disease. hiv is no more the doom it was a decade ago. there are many disease a lot more disturbing than hiv. on top of the list cancer but also hcv which is curable in a small portion of patients but with a heavier treatment than hiv. a father of a friend has it and there were days he was willing to change his condition with mine!

Is the effort any greater in searching for a cure or better treatment than in the past?  I agree for those of us diagnosed these days our drs are far more optimistic than those diagnosed 15 - 20 years.  At that time while drs were telling patients they were HIV+ the patient was also being told to begin to get their affairs in order.  But don't forget some LTS face hardships on a daily basis due to HIV that we may never know.  Plus one who has insurance, a job and a good support system are at a much more advantageous position than those without insurance, are unemployed and lack the support the need.  I also think there is a far greater stigma attached to HIV than to cancer, otherwise we wouldn't have such a difficult time disclosing or lying about our status.  Finally in my opinion some of the most pessimistic are the newly infected with their doom and gloom outlook when first diagnosed.  Those of us who have 3 or 4 years under our belt or are LTS aren't pessimistic, but realistic.  We all hope for cures, vaccines, better meds, better health care/insurance, less stigma but we realize that it is what it is today.
"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 sam66

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #123 on: December 08, 2010, 12:19:05 PM »
Is the effort any greater in searching for a cure or better treatment than in the past?  I agree for those of us diagnosed these days our drs are far more optimistic than those diagnosed 15 - 20 years.  At that time while drs were telling patients they were HIV+ the patient was also being told to begin to get their affairs in order.  But don't forget some LTS face hardships on a daily basis due to HIV that we may never know.  Plus one who has insurance, a job and a good support system are at a much more advantageous position than those without insurance, are unemployed and lack the support the need.

         That's true Woods

                                 But some people loves nothing more than wallowing in their own misery and try to
           make others drown in it too,   try to conceal it as some higher intellectual discussion. But too
           delusional to see that they have some serious psychological issues.
december 2007 diagnosed +ve ,

Offline Delby

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #124 on: December 08, 2010, 12:29:59 PM »

Taking this virus seriously and respecting the powerful meds used by many to control it are fundamental to surviving it. That is all.


who said they are not taking the virus seriously? I take it extremely seriously. Hence why I take my meds every day without fail. I know what it does to people. Has there been one post on here from anyone saying HIV isnt serious? Do i respect the meds? I don't respect them, i take them. I know how powerful they are. I know how shit i feel from them...can't think straight, brain fog, impairment, memory loss, dizziness, insomnia..etc..but i take them and get on with it. I don't pay homage to them. They keep me alive and that's that..much in same way insulin keeps a diabetic alive.


I am sure your brother does not feel cavalier about diabetes. I am sure you do not feel cavalier about UC. Ignoring the fact that, without proper treatment, HIV is deadly is idiotic. Pretending the meds are benign for everyone is an insult to the people right here for whom they are most assuredly not. And benign or not, the meds are appallingly expensive, and require a dedication to insurance (which in the US means dedication to employment on a rather professional level) that many simply do not have, and/or cannot sustain.


Again, who said that HIV isnt deadly??? Did I?? Why on earth would anyone say such a thing and more to the point why do you accuse others of saying it? The small minority of people out there (not on these forums) are called denialists. They are marginilised and have a completely distorted view on things. Their view is irrelevant. What we are discussing is the view of the masses, and if the view is 'there is hope to be had'; this isnt the same thing as 'HIV isnt deadly'. Hope is not denialism. I've spent many weeks in hospital..nearly died. I know what it's like believe me. But where are you going with your thread?? If this forum was full of denialists then i'd say go for it, but it's not.

These are facts. I am not trying to take hope away from anyone. I am trying to instill hope, REAL hope instead of smoke-up-your-ass hope that, if these forums are any indication, seems to always evaporate when reality sets in.

Your not installing any facts. Your not quoting facts or statistics, but rather quoting objective personal experiences that may not match someone elses. For every person doing well with HIV there is a person doing badly. Again what facts are you trying to display? That HIV is deadly? We get that? That the meds are powerful? We get that? But what is your point? How are you helping people?


Jesus. You mention the harsh realities you and your brother have to live with, then turn around and pretend that this is nothing because you, personally, tolerate the Atripla? Half of the folks who take it don't. And the next line of therapy is more expensive AND more difficult. Hopefully in time this will change. But the reality TODAY is that it is a big deal.

Where did i say that HIV is nothing? Did you not read my post! I was suicidal. I have been hospitilised. HIV has destroyed me in so many ways. But I have hope for the future. Where did I say that it's nothing??? You are making this up as you go along.

A big deal that can be survived, and a life can even thrive, if the virus is controlled.But not dismissed as irrelevant. Which is the mindset I have seen here quite often recently, especially among the newly diagnosed (but obviously also among the privileged and those in nations who subsidize the meds).

Who said HIV is irrelevant? If someone is getting on with their life and trying the best they can to put it to the back of their mind (as we all do!!) and trying not to let it eat away at every cell of their existence..surely they should be comended? Surely that's a good thing? Or should we wake up and every day say in the mirror 100 times 'HIV IS BAD'. We know it's bad!!! Again what is your point?

I think that by being honest with the seriousness of HIV and the meds used to control it, I am offering real hope. I am aghast at how many people take Atripla, yet do not know what medications are in it. I am amazed when people find themselves unable to afford it when they have done zero research into funding and cost. Living with HIV is NOW a decades-long proposition. Knowing what these meds are, what they do, how much they cost, and what one must do in order to insure themselves is the very epitome of hope.

In my opinion you are not offering hope. You are taking hope away. You are dismissing hope in favour of 'realism'. Believe me, I am a realist. Probably more than you. So much so i have signed up to a Euthanasia clinic in Europe and have spent a lot of time and effort puting my plans in order should things get bad. I know that today I could be good but tomorrow could be terrible. But i still have hope that I may go another 20-30-40 yrs and look back one day and say...'God, i'm glad i stayed around to witness all these years'. Have realism, that's fine, but don't dimish the hope of others.

[/quote]

Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #125 on: December 08, 2010, 12:32:50 PM »
         That's true Woods

                                 But some people loves nothing more than wallowing in their own misery and try to
           make others drown in it too,   try to conceal it as some higher intellectual discussion. But too
           delusional to see that they have some serious psychological issues.

I cannot imagine this is germane to the discussion, unless of course you are planning to outline exactly who you are referencing.

"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 #126 on: December 08, 2010, 12:34:07 PM »
                                        But some people loves nothing more than wallowing in their own misery and try to
           make others drown in it too,   try to conceal it as some higher intellectual discussion. But too
           delusional to see that they have some serious psychological issues.

Fortunately I don't know of anyone on this sight who is that way!  And I don't think any of us here can make qualified statements regarding anothers psychological status based on internet postings.
"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 jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #127 on: December 08, 2010, 12:41:09 PM »
I think that disclosing personal stories, like you just did, is much more helpful and meaningful than a clinical list of possible side effects.

This is why I and others do not disclose personal stories:

         That's true Woods

                                 But some people loves nothing more than wallowing in their own misery and try to
           make others drown in it too,   try to conceal it as some higher intellectual discussion. But too
           delusional to see that they have some serious psychological issues.

They are ammunition and they make those of us who do this thing targets for others.

"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."

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Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #128 on: December 08, 2010, 01:02:26 PM »
Quote
Your not installing any facts. Your not quoting facts or statistics, but rather quoting objective personal experiences that may not match someone elses. For every person doing well with HIV there is a person doing badly. Again what facts are you trying to display? That HIV is deadly? We get that? That the meds are powerful? We get that? But what is your point? How are you helping people?

I actually quoted facts in my very first post on this topic. And have done so several times since.

Throwing these posts in the face of a significant number of persons on this forum who did not wish to know them was considered negativity. I suggest you read the thread.

If "hope" means intentionally downplaying the seriousness of the virus or the meds, then I suggest that you are correct in your assessment. And it is quite possible that for those who cannot find a meeting place between utter blind optimism and suicidal negativity, this level of denial is needed in order to keep a person alive.

And maybe this is why this thread is NOT in JUST TESTED POSITIVE, and is instead in LIVING WITH, where information is considered power, and not punishment.

You know something? It's not my job, nor my desire to instill fear OR hope. HIv is a remarkably unique bug, and the meds often have a unique impact on those who take them.

What pisses me off is when ANYONE comes here and tries to tell the entire group that their outlook and their experiences are the only valid ones, when their own experiences have been minimal. These are the SAME people who don't research the very drugs they shove down their throats, and they are the SAME folks who rush back, breathless, when they have a blip in their viral load or their CD4 count does not rise like they think it should.

We have a WHOLE SITE dedicated to this information. There is NO REASON why someone should join AIDSMEDS and remain ignorant of  - get this - AIDS MEDS. Tim Horn and others have done a fantastic and exhaustive job of putting this info out there. If people want to or need to tell themselves that this info does not exist, or are too overwhelmed to seek it out on this site, then that is their issue - and for those newly infected I know what a daunting learning curve it can be. Each in his or her own time, and all that.

Just don't blame me for copying and pasting this site's OWN INFO as a caveat to "HIV is no big deal." And do not try to analyze me when, an an HIV educator, I find a direct line between the "No Big Deal" mentality and the rise in new infections, the stunning ignorance of the newly infected insofar as medication (it's cost, it's effects, it's limitations) are concerned. I find a direct line between the "No Big Deal" mentality and the complacency as regards medical adherence, because people start meds before they are emotionally capable of making that profound commitment. And I have seen all these things on these boards enough to get tired of it.

You seem to thing that there is nothing but a chasm between total optimism and despair. I understand that. But it is incorrect. There is knowledge. There is the power to understand that your experiences, like mine, may or may not reflect others. And there is the ability to empathize with those who might not have that experience, be it positive or negative or somewhere in between.

You should stave off your personal despair by any means necessary. Just don't beat people like myself with that stick in the process. If you do not like my posting, please place me on ignore. If you think I am doing harm to the poz community, email the mods and get me removed from the site. No one forces you to read this. No one forces you to care.

It is good that you do. It is sad that you cannot see the hope and optimism I try very hard to convey in every post.







"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 sam66

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #129 on: December 08, 2010, 01:17:52 PM »
    I aplogise profoundly  for and withdraw my last statement , as it has caused offence.

    It was a general observation and not aimed at any individual

    Sam
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Offline RapidRod

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #130 on: December 08, 2010, 01:22:07 PM »
    I aplogise profoundly  for and withdraw my last statement , as it has caused offence.

    It was a general observation and not aimed at any individual

    Sam
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Re: HIV meds, and the fallacy of "no big deal"
« Reply #131 on: December 08, 2010, 01:33:42 PM »
I cannot imagine this is germane to the discussion, unless of course you are planning to outline exactly who you are referencing.



I think that's called "bullying" but ya know it's only The Cabalô that does such things.
   
    It was a general observation and not aimed at any individual

    Sam

It's kind of clear that it was aimed at one individual.
« Last Edit: December 08, 2010, 01:35:13 PM by Miss Philicia »
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Offline Matty the Damned

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #132 on: December 08, 2010, 01:49:15 PM »
    I aplogise profoundly  for and withdraw my last statement , as it has caused offence.

    It was a general observation and not aimed at any individual

    Sam

This is utter fucking rubbish.

It is very clear that more than one of your "statements" have been pointed directly at JK and were calculated to cause offence.

Which is fine. The internets is a wild old place and JK is a grown man who can look after himself, but save this sort of passive-aggressive bullshit for your family and loved ones.

MtD

Offline AlanBama

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #133 on: December 08, 2010, 02:47:53 PM »
I just want to chime in here briefly, and state that from PERSONALLY knowing JK, he is a very knowledgeable HIV/AIDS educator, a world-class intellectual, a realist, AND an optimist.   Hell, he wouldn't be here if he didn't have a good attitude about living with AIDS.  Many of us wouldn't, me included.

Most certainly those of us diagnosed in the 80's have a different 'take' on HIV than those diagnosed in the 00's.   Doesn't mean we aren't optimistic, but our experiences have taught us to be first and foremost realisitic in our expectations of a life with AIDS.  HIV has done a number on some of us, over the past 20+ years.  Who's to say what it will be like in 2020-2025?  Time alone will tell.   Hopefully, by then there will be a cure.   If not, the people for whom HIV is "no big deal" today, may be singing a different tune.   This is not to dash hope or optimism, but again, just to be realistic.   We are a 'living study', a work in progress.
No one knows what 20 years of taking Atripla will do to someone.   Hopefully, the impact will not be too severe on the bodies and minds of those currently taking this regimen.

I also have to say that JK is my friend, and one of the sweetest and most humble people I have ever met.
He doesn't need and would never ask for me or anyone else to defend him, or his capabilities and expertise on HIV.  Matty is right; let's cut out this passive-aggressive mess, and between-the-lines finger pointing and name calling.   It's childish and we're all bored with this clowning.

Alan

PS - Cliff, my friend, I am glad to hear that you are doing so well.  Hugs to you.   :-*
"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 newt

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #134 on: December 08, 2010, 02:54:02 PM »
Quote
Half of the folks who take it don't. And the next line of therapy is more expensive AND more difficult.

Now you are being hyperbolic on two points.

The discontinuation rate for efavirenz is between 6-7% and 22%. In the UK, about 20% of people have switch off of efavirenz after two years for any reason, including pregnancy but mainly I guess CNS side effects. This is nowhere near half.

The trouble is, if it's good, it's good, if it's bad, it's very bad. Or perhaps troubling in a lingering kind of way. Which personally I think people should do sommat about, if they can. Then their combo can be as near as damn a little deal as possible.

Next line of therapy being more difficult, natch, nada, should be more easy really in most cases, with CNS side effects gone. Okay, their may be alternative issues to handle, but harder, mainly, I think, no, not these days.

I don't like "no big deal" as a phrase, it's begging your own answer.

If you wanna talk about poor access to care, talk about access, if you wanna talk about people's attitudes to the virus, do that. But don't dump all the shit on the meds. They ain't perfect, far from it. They need to be better, easier. But we have a pretty good start, eh?

- matt
« Last Edit: December 08, 2010, 06:12:49 PM by newt »
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Offline aztecan

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #135 on: December 08, 2010, 03:27:31 PM »
. . . We are a 'living study', a work in progress.

I think this is the crux of the issue. We are indeed a work in progress. I remember when AZT was first approved, and people were kicking the bucket because they hadn't worked out all the dosage kinks yet.

I remember when the PIs first came on the scene. I should, they saved my life, and the lives of many others. They also came with a price and I have the buffalo hump, hyperlipidemia and other issues to show for it.

I now see people taking much less toxic meds, doing quite well in many cases, and some seem to have the idea that HIV is just another easily managed and chronic condition.

The problem is, every time we get it all figured out, something new pops up.

We are all guinea pigs.

Knowing that didn't stop me from first taking the less than efficacious Saquinavir in early 96, nor in my switching to Crixivan as soon as could get on the waiting list. (They didn't have enough to go around, so some of us had to wait.)

The lack of historical data regarding long-term effects didn't stop me from switching to Isentress either.

As Alan said, we have no idea what will happen in 10, 15, or 20 years of taking these newer meds. But the bottom line for me is I know where I would be without them - taking a long dirt nap.

So, I tend to look at all the idea of HIV being "no big deal" with a jaundiced eye, not because I am not optimistic, but because I know first hand the realities of living with HIV are more complex and less certain than many seem willing to admit.

HUGS,

Mark
« Last Edit: December 08, 2010, 03:33:25 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline GSOgymrat

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #136 on: December 08, 2010, 03:38:33 PM »


So, I tend to look at all the idea of HIV being "no big deal" with a jaundiced eye, not because I am not optimistic, but because I know first hand the realities of living with HIV are more complex and less certain than many seem willing to admit.

I agree, and I literally look through jaundiced eyes thanks to Reyataz elevating my bilirubin.

Offline sharkdiver

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #137 on: December 08, 2010, 07:06:23 PM »

The problem is, every time we get it all figured out, something new pops up.

We are all guinea pigs.

   I think sums up my experience of taking meds.  I agree that the newer meds are less "toxic" and "easier to manage" and have less immediate side-effects. And that's the issue too. We know nothing of the long term side-effects of the newer drugs.  In fact, during my latest doctor's visit she she that "we are getting pretty good at keeping HIV at bay for longer periods of time, but the medical community is seeing diabetes and heart disease develop 20 years earlier with patients on HAART."
 
    I'm also going to have to add that I admire Jonathan's passion and commitment for these forums. Frequently being compassionate is not always delivering a message we want to hear. I think a lot of the No Big Deal mindset also comes from denial of the situation. It's all a process; stages of acceptance if you will.
   

Offline David_CA

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #138 on: December 09, 2010, 04:02:26 PM »
I will not speak to the experiences of LTS's, as I am thankful that I will (most likely) not have to go through the same hell that they did.  By this I don't only mean their personal health struggles due to HIV / AIDS but also to the loss of friends and partners from the virus and the lack of any real hope.  I think back to my early days (in 2006) after diagnosis and reading story after story of survivors and of those who didn't make it.  I think about reading many panels on the AIDS Quilt online.  I remember the AMG's where people recount their personal losses (Herman's always stick in my mind).  To not learn from these stories and experiences would be stupid, in my opinion.

I'm reminded of HIV and AIDS every time I do anything physical that requires much in the way of deep breathing; I simply cannot breathe deeply.  PCP pneumonia took care of damaging my lungs... lungs that I quit smoking 16 years earlier to protect; lungs that benefited from all the cardio exercises I've done since the mid 90's.  Yet, to me, HIV is in, many ways, 'no big deal'.  It's no big deal that I spent 8 days in the hospital due to pneumonia.  It's no big deal in that I can't take a deep breath.  It's no big deal that I cannot relocate, change jobs, pursue self employment, etc due to the fact that I'd lose my insurance and have made too much to qualify for ADAP.  It's no big deal that I'm having cholesterol issues due, most likely, to Truvada. 

So how can I say that it's 'no big deal'?  Oddly enough, it's because there is no immediacy to most of these problems (yet).  I don't have scores of friends dying; I'm often in relatively large group of guys who are mostly HIV+... and whom I don't expect to die anytime soon.  My returning to school is to enhance my marketability for future employment and avoid some of the work / insurance issues I mentioned.  I still exercise to improve what cardio / lung function I have.  I take better care of myself than I did pre-diagnosis.  I've met a lot of great people due to being HIV+.  I've also had the best sex in my life post-diagnosis. 

In the mean time, I try to remain optimistic that newer treatment regimens will have fewer side effects, that I'll continue to have affordable insurance, that I remain in good health.  Had I experienced what LTS' have, I don't know that I'd feel the same. 

Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
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Offline tednlou2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #139 on: December 14, 2010, 10:56:38 PM »
NYC Ads Show Graphic Content To Fight HIV:

So, what do ya'll think of the ad?  The picture of anal cancer flashes by very quickly that you have to pause just right to see it.  The pic is very graphic!  Is that anal cancer that was left untreated or is that a normal case?

http://www.poz.com/articles/NYC_Graphic_PSA_1_19595.shtml

Offline Matty the Damned

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #140 on: December 15, 2010, 12:20:26 AM »
NYC Ads Show Graphic Content To Fight HIV:

So, what do ya'll think of the ad?  The picture of anal cancer flashes by very quickly that you have to pause just right to see it.  The pic is very graphic!  Is that anal cancer that was left untreated or is that a normal case?

http://www.poz.com/articles/NYC_Graphic_PSA_1_19595.shtml

Dunno Teddy. Do you think you might have it?

MtD

Offline zach

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #141 on: December 15, 2010, 09:08:03 AM »
AIDS is treatable, but still a big deal. My experience has been that nothing about this is easy. I've been very frustrated with that mentality from doctors and family.

I came in late and never knew what it was like in days where it was almost certain death sentence. But I'm not so dense that I don't see that those that came before me, and the LTSs that have supported me, have experienced horrors I will probably never fully comprehend/appreciate. Someone here had a line I love, they blazed the trail, walked it, then went back to pave it, then drive it, and still reach back to help us new to this learn the road. Hopefully the lives and suffering of those that have passed won't have been in vain.

Yeah, pictures of anal cancer are graphic. So was the time photo that brought aids home. But that picture is what gave me the resolve to take my one pill everyday. I don't want to die that way. I don't want others to die that way. If I am part of some experiment, so be it. I hope it benefits those that follow. I'm a lab rat, I get it.
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Offline tednlou2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #142 on: December 15, 2010, 11:55:37 PM »
Dunno Teddy. Do you think you might have it?

MtD

Well, I was recently checking myself out down and inside there.  I felt some mass inside that kinda scared me--I'm serious here.  But I think it was obviously just some poo-- as it wasn't there the next day.  So, I think it was just some Christmas Poo, luckily. 

Online Miss Philicia

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #143 on: December 15, 2010, 11:58:11 PM »
Christmas Poo, eh tedderz.  Is that anything like corn pudding?
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Offline Jeff G

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #144 on: December 16, 2010, 12:00:50 AM »
Well, I was recently checking myself out down and inside there.  I felt some mass inside that kinda scared me--I'm serious here.  But I think it was obviously just some poo-- as it wasn't there the next day.  So, I think it was just some Christmas Poo, luckily. 

Did you call the police and report it missing ? If someone was stealing my shit I would call the police .

Offline Matty the Damned

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #145 on: December 16, 2010, 12:15:22 AM »
Well, I was recently checking myself out down and inside there.  I felt some mass inside that kinda scared me--I'm serious here.  But I think it was obviously just some poo-- as it wasn't there the next day.  So, I think it was just some Christmas Poo, luckily. 

Well masses are one thing. And if it was poo, don't you think some would have come away on your inquisitive little finger? It might have been a haemarrhoid.

Might have been.

Don't discount the presence of lesions. They're different to masses. They can be entirely painless like syphilis but also they can be really painful.

It's a just such a mixed bag.

You can never tell. There could be anything growing down there. Silent and malevolent. By the time you really notice it could be too late.

That said, it's probably nothing.

MtD


Offline jkinatl2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #146 on: December 16, 2010, 12:17:13 AM »
Well, I was recently checking myself out down and inside there.  I felt some mass inside that kinda scared me--I'm serious here.  But I think it was obviously just some poo-- as it wasn't there the next day.  So, I think it was just some Christmas Poo, luckily. 

Lucky indeed. They say that Christmas Poo is the luckiest poo of the year. And holding that poo tightly between your hands and making a wish, that Christmas Poo can - and will - grant that wish. I congratulate you for finding such a treasure.

And with that, I think it is safe to assume that this thread has passed through the collective, been digested and sorted, excrement voided by the moderators, and is now of no use, other than scatological/fetishistic to the body of AIDSMeds.

"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 tednlou2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #147 on: December 16, 2010, 12:25:29 AM »
Christmas Poo, eh tedderz.  Is that anything like corn pudding?

Corn pudding is always a nice surprise.  Mushroom pudding is too.

Did you call the police and report it missing ? If someone was stealing my shit I would call the police .

I know, right.  It was there one day and gone the next.  The only description I could give to police was a round, white figure.  Not a lot to go on, but they said they'd sniff out the perp.

Offline komnaes

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #148 on: December 16, 2010, 05:44:20 AM »
Here you go, the missing Xmas Poo..

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)

Online Miss Philicia

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  • celebrity poster, faker & poser
Re: HIV meds, and the fallacy of "no big deal"
« Reply #149 on: December 16, 2010, 11:11:13 AM »
"Iíve slept with enough men to know that Iím not gay"

Offline tednlou2

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Re: HIV meds, and the fallacy of "no big deal"
« Reply #150 on: December 19, 2010, 01:53:10 AM »
Well masses are one thing. And if it was poo, don't you think some would have come away on your inquisitive little finger? It might have been a haemarrhoid.

Might have been.

Don't discount the presence of lesions. They're different to masses. They can be entirely painless like syphilis but also they can be really painful.

It's a just such a mixed bag.

You can never tell. There could be anything growing down there. Silent and malevolent. By the time you really notice it could be too late.

That said, it's probably nothing.

MtD



Matty, you're right that I shouldn't just dismiss it.  This is why I'm now suppose to see a colorectal doc just to make sure all is okay down there.  Better safe than sorry.  The doc ordered it after I told them 4 people in my family have gotten either colon or rectal cancer.  They were all aunts and uncles and not immediate family members, but I don't think that matters.  A couple of them were just in their 40's--not too far from me.  All but one died from it--let go too long.  My cousin, who is 38, told me he's been getting checked for it for the last decade.  That surprised me as he never seemed too concerned about his health.  So, if he's concerned about it, then I should get checked, too.  I'm sure it is nothing, but better to see where things stand now and get checked again a few years down the road.

Offline WillyWump

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  • Posts: 7,184
  • your ramblings bore Yamaguchi Kitteh
Re: HIV meds, and the fallacy of "no big deal"
« Reply #151 on: December 19, 2010, 10:19:54 AM »
  The picture of anal cancer flashes by very quickly that you have to pause just right to see it.  The pic is very graphic!  Is that anal cancer that was left untreated or is that a normal case?

http://www.poz.com/articles/NYC_Graphic_PSA_1_19595.shtml

That is horrendous! I'm demanding an Anal check next week when I see the doc, I think Im due for a good scraping again anyways.

-W
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

 


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