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Author Topic: For those of you who might be questioning HAART, or maybe when to start.  (Read 25617 times)

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Offline Hellraiser

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Wow. Don't be insulted, but how offensive and condescending are posters allowed to be here?

That's not even remotely offensive.

Offline griezzel

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That's not even remotely offensive.

No, of course you wouldn't think so.  ::)

On the face of it, Prissy's post makes perfect sense. But it's what he's replying to that makes it objectionable.
« Last Edit: March 08, 2010, 04:12:14 PM by griezzel »

Online Miss Philicia

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Oh good lord.
"I’ve slept with enough men to know that I’m not gay"

Offline Matty the Damned

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Wow. Don't be insulted, but how offensive and condescending are posters allowed to be here?

Depends on how thin-skinned and offended those responding allow themselves to be.

MtD

Offline Joe K

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Wow. Don't be insulted, but how offensive and condescending are posters allowed to be here?
The only one being offensive and condescending is you, by suggesting that you are the arbitrator of how to respond to a thread. The post was on point and relevant. Your comment about Miss P's post, however was nothing short of a cheap shot.

Offline buffaloboy

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No, of course you wouldn't think so.  ::)

On the face of it, Prissy's post makes perfect sense. But it's what he's replying to that makes it objectionable.

Indeed it is.

But Miss Philicia tends to behave rather like a member of a cult when it comes to HIV, so if your views happen to be discordant with her own, she feels it's her duty to patronise you.

Offline Hellraiser

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*facepalm*

Offline Moffie65

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Wow. Don't be insulted, but how offensive and condescending are posters allowed to be here?

Griezzel,

Why do you think some of us dinosaurs stay with this site, and post threads like this one and the one about “HIV infection” from Killfoile?  Seriously, why?

I'll tell you, since you think that posting clear information and often personal opinion about HIV/AIDS is both offensive and condescending.  When we see people who are on here and dabbling with "fear" of treatment, and "fear" about everything connected to HIV, we respond.  I thought about this subject and thread, ever since we recently had some visitation from an HIV/AIDS "denial" site, elsewhere on the web.  Unfortunately, some of you who have been very fearful of the treatment, yet not terribly fearful of the reality of untreated HIV compound the confusion.  We could just as easily go about our daily business and struggles in life without even allowing any of your feelings about HIV treatment and fight bother us, but we don’t, we come day after day, and read of people facing the “wall of HAART” like it was an insurmountable wall of misery.  

New people here answer posts from other new people, (less than two or three years) and often times the information you all exchange is not only false, but grounded on no scientific research, or personal witness to years of experience with this bug.  I would never try to negate such posts, so in the constant struggle here on line for civility; most of us tuck our fingers and just don’t bother to ruffle feathers.  To find that this OP has caused any distress on an HIV/AIDS support site, to me is astounding.  I cannot believe that in this day of “Too Much Information”, people would not only welcome educational posts such as this, but encourage as much participation of those who can speak personally about their experiences and their struggles with therapy.

Lastly, we talk rather glibly currently in this forum about OIs, but if you have bothered to read this thread VERY carefully, you will find that many of us have lost friends and acquaintances to them very recently.  They are still happening, and still happening to people who have been on HAART for some time.  Unfortunately, the reality that treatment failure, resistance and other physical issues can still very much happen is still very much a part of all our lives.

I encourage you to join in the learning and please try to stop being so critical about the reality of HIV/AIDS.  It will only prove to help you in the future.
« Last Edit: March 08, 2010, 04:40:13 PM by Moffie65 »
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Joe K

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Indeed it is.

But Miss Philicia tends to behave rather like a member of a cult when it comes to HIV, so if your views happen to be discordant with her own, she feels it's her duty to patronise you.


*double facepalm*, when words can never adequately express, just how stupid what you just did was.
« Last Edit: March 08, 2010, 04:41:24 PM by killfoile »

Online Miss Philicia

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On the face of it, Prissy's post makes perfect sense. But it's what he's replying to that makes it objectionable.

Just quoting the objectionable name calling here so that it can't be edited.  Thanks.
"I’ve slept with enough men to know that I’m not gay"

Offline David_CA

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I'm curious as to what the two dissidents of this thread would like to read.  Perhaps a new thread can be started telling why people don't want to start HAART.  Honestly, several people have posted that they wanted to start meds.  Others, like me, have posted how we're alive because we started.  I like to think of quitting cigarette smoking.  A Dr. can tell one repeatedly that he needs to stop.  Ultimately, it's up to the individual.  Criticizing those who state such (that it's the individual's responsibility) is pointless.  If I'm genuinely afraid of meds or of some other life-saving measure, I know that if I post here and ASK for information, support, hand-holding, whatever that I'd receive it.  I'd have to ask, though.

[edited to add the following]
I probably should say that members here typically have good memories of other member's posts.  I've seen such posts come back to haunt members when they genuinely need help here; they received minimal support.  There are ways to respectfully disagree without being dismissive, insulting, or rude.
« Last Edit: March 08, 2010, 04:52:10 PM by David_NC »
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%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline BT65

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Indeed it is.

But Miss Philicia tends to behave rather like a member of a cult when it comes to HIV, so if your views happen to be discordant with her own, she feels it's her duty to patronise you.

Can't think of anything productive to say, aye?
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Joe K

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Maybe I am splitting hairs, but I do not agree with calling anyone, who disagrees with any post, a dissident or denialist, because both of those words are too emotionally charged and a red flag for this site. I want to remind everyone that we are each entitled to our beliefs and opinions and as such, we are all worthy of respect. That being said, there are constructive ways to disagree that will draw the other posters, whereas insulting members, who are trying to be helpful, is of no use to anyone.

Let me remind everyone here, who the real enemy is... HIV.

Offline buffaloboy

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Can't think of anything productive to say, aye?

It's a valid comment in light of some of Miss Philicia's responses.

Offline David_CA

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Maybe I am splitting hairs, but I do not agree with calling anyone, who disagrees with any post, a dissident or denialist, because both of those words are too emotionally charged and a red flag for this site. I want to remind everyone that we are each entitled to our beliefs and opinions and as such, we are all worthy of respect. That being said, there are constructive ways to disagree that will draw the other posters, whereas insulting members, who are trying to be helpful, is of no use to anyone.

Let me remind everyone here, who the real enemy is... HIV.

It's ok to split hairs and to disagree, but the definition of dissident I'm going by is 'disagreeing or dissenting, as in opinion or attitude'... especially when one considers that there were only two who were disagreeing with pretty much everybody else.  But hey, you disagreed in a respectful fashion, so it's cool.   ;)
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%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline skeebo1969

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   I think some forget that there are those of us here who have went through the very same fear of the meds they are currently having, it's nothing new.  Most of us have faced it and found there was only one way to truly get over it.... and that's to jump when the plane reaches altitude.   It's also hard to get someone to fully understand your fear of taking one pill when they themselves have ventured through the days of having to pop handfulls of pills daily.  

It may just be one of those tough love scenarios me thinks...

   The sad truth is you are going to have to conquer this fear eventually, and it doesn't matter what tone of advice someone used to tell you this.
I despise the song Love is in the Air, you should too.

Offline buffaloboy

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I'm not a regular visitor to the forums and thus don't post regularly, but I did recommend this site to someone I was chatting to online today, who was diagnosed a week ago. But after seeing how this thread has gone, I rather wish I hadn't bothered.

I always thought this was a space for a range of views, rather than what seems to be happening here, which is if you have the audacity to express a different opinion you get shouted down and patronised.

To be absolutely clear, I wasn't suggesting in any way, that people should postpone taking medication but,  rather, trying to drill down and think about and understand all the reasons why this is sometimes the case - not just in my own experience but other peoples too.

Initially, this thread had the potential to influence some of the drug-shy positive people out there, but having degenerated in the manner that it has, I highly doubt that anyone with a low CD4 count reading this will feel encouraged or inspired to start treatment any time soon.

Great work, folks.


Offline Matty the Damned

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I'm not a regular visitor to the forums and thus don't post regularly, but I did recommend this site to someone I was chatting to online today, who was diagnosed a week ago. But after seeing how this thread has gone, I rather wish I hadn't bothered.

I always thought this was a space for a range of views, rather than what seems to be happening here, which is if you have the audacity to express a different opinion you get shouted down and patronised.

To be absolutely clear, I wasn't suggesting in any way, that people should postpone taking medication but,  rather, trying to drill down and think about and understand all the reasons why this is sometimes the case - not just in my own experience but other peoples too.

Initially, this thread had the potential to influence some of the drug-shy positive people out there, but having degenerated in the manner that it has, I highly doubt that anyone with a low CD4 count reading this will feel encouraged or inspired to start treatment any time soon.

Great work, folks.



Look Kiddo,

If people are going to make life and death medical decisions based solely on what they read in some thread on some internet message board, they've got much bigger problems than HIV.

I mean really, let's get things into perspective here.

MtD

Offline griezzel

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The sad truth is you are going to have to conquer this fear eventually, and it doesn't matter what tone of advice someone used to tell you this.

Agree with the first part of the statement but not the second. I think it matters a great deal. Obviously, many here agree with you completely.


Offline Moffie65

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I'm not a regular visitor to the forums and thus don't post regularly, but I did recommend this site to someone I was chatting to online today, who was diagnosed a week ago. But after seeing how this thread has gone, I rather wish I hadn't bothered.

having degenerated in the manner that it has, I highly doubt that anyone with a low CD4 count reading this will feel encouraged or inspired to start treatment any time soon.
Great work, folks.

How dare you negate the very essence of an HIV/AIDS diagnosis.  My God man, DEATH IS THE OTHER OPTION, AND YOUR DECLARATIONS DO NOTHING TO HELP GET THIS POINT ACROSS.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline buffaloboy

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Look Kiddo,

If people are going to make life and death medical decisions based solely on what they read in some thread on some internet message board, they've got much bigger problems than HIV.

I mean really, let's get things into perspective here.

MtD
But the issue at hand is HIV and, for better or worse, people use this site for advice and guidance all the time.

OK, Sunshine?

Offline buffaloboy

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How dare you negate the very essence of an HIV/AIDS diagnosis

And your evidence for this is what precisely?

Offline skeebo1969

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Agree with the first part of the statement but not the second. I think it matters a great deal. Obviously, many here agree with you completely.



You are just hearing it from someone that got told in the very same manner 4 years ago.  Truth is no one here has any magical advice to get over that fear... plain and simple.  We can tell you what that bump on your dick might be, but fuck dude we can't get that other part figured out yet. lol
I despise the song Love is in the Air, you should too.

Offline Joe K

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David, I realize that the use of the word is correct, I am merely suggesting that the particular term "dissident" is really tainted on this forum and it may cast a poster in an "assumed" negative light. Given the power of the terms, I just think it is best that we avoid them unless used in their most extreme context.

Buffaloboy and Griezzel, while I understand your point about the tone of some posts, I disagree that just because a post is forceful, that it is not effective. The whole point of these forums are for us to share our experience with HIV and to hopefully help the newly infected, to have an easier time than we did. HIV is damn scary, as it should be and sometimes you have to react differently, for some posters, for your point to sink in. What you will not find however, is anyone denigrating or insulting a poster, because of the opinions they hold. Can you say, that you are giving all the posters here the same courtesy?

As I have mentioned to other posters, if you have your questions or concerns, please ask and we will try and answer. When you come into a forum, such as this, I ask that you be considerate of the great courage and pain that resides here. We strive to treat everyone as equal and sometimes things get heated, but rarely do they turn mean. If you have constructive criticism, then please share, but please do not assume that you know the ONLY way to reach the newly infected.

We do this for you.

Offline Joe K

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But the issue at hand is HIV and, for better or worse, people use this site for advice and guidance all the time.

OK, Sunshine?

What exactly is your problem? People are trying to be decent here and all you can do is insult. I don't know what you think you KNOW about HIV, but my guess is squat. Further more, while I might like to share your opinions, I am afraid, there is simply not enough room, up your ass, for both of our heads  ;D

Offline griezzel

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i'm sorry, but...
where is the insult????

Offline griezzel

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..since you think that posting clear information and often personal opinion about HIV/AIDS is both offensive and condescending.
But I don't! <sigh>

Quote
Unfortunately, some of you who have been very fearful of the treatment, yet not terribly fearful of the reality of untreated HIV compound the confusion.

But, you see, you're forgetting that "we" are not a few. Fear of drugs is very common. Dealing with that fear in people is really more just plain, basic everyday psychology, not necessarily a mental health issue. And you are also making an assumption that everyone these days facing the decision of when to start med therapy is unaware of the consequences of a weakened/damaged immune system and subsequent OI's.

It seems then that the regulars here are in battle mode and need to take a little care who they are attacking and why.

This will be my final post. Since people now seem determined to perpetuate misunderstandings in a most disagreeable manner, I will respectfully withdraw. Have said all I need to. <yikes!>

« Last Edit: March 08, 2010, 06:16:12 PM by griezzel »

Offline buffaloboy

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What exactly is your problem? People are trying to be decent here and all you can do is insult. I don't know what you think you KNOW about HIV, but my guess is squat. Further more, while I might like to share your opinions, I am afraid, there is simply not enough room, up your ass, for both of our heads  ;D

I'm not the one doing the insulting. Take a look in the mirror.
« Last Edit: March 08, 2010, 06:49:46 PM by buffaloboy »

Offline RapidRod

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But I don't! <sigh>

But, you see, you're forgetting that "we" are not a few. Fear of drugs is very common. Dealing with that fear in people is really more just plain, basic everyday psychology, not necessarily a mental health issue. And you are also making an assumption that everyone these days facing the decision of when to start med therapy is unaware of the consequences of a weakened/damaged immune system and subsequent OI's.

It seems then that the regulars here are in battle mode and need to take a little care who they are attacking and why.

This will be my final post. Since people now seem determined to perpetuate misunderstandings in a most disagreeable manner, I will respectfully withdraw. Have said all I need to. <yikes!>


Being uneducated is one thing, but to ignore the facts is a totally different game.

Offline Tim Horn

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Hi Guys (and Gals)...

Listen, it seems as if everyone's getting a little steamed. While that's certainly understandable, I'd hate for this thread to be shut down if things get out of hand. So let's keep the conversation thoughtful and considerate. Name calling and barbs are beneath everyone here -- so please take a couple deep breaths before posting.

Thanks all,

Tim

Offline Moffie65

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Thanks Tim,

I am really enjoying this thread, and I do understand that everyone has a voice and needs to be heard.  I do wish that we can keep this discussion going to its conclusion based not on arguements, but based on the truth and reality of the challenges that face all of us in the victory over this virus.  I want to make sure that those that are troubled about HAART, and living a victorious life with HIV, understand that it is a constant for life; or at least until science claims victory over viral infections.

Some have been uncomfortable with some of the flippant answers and comments from some of the membership, but in reality, when talking about the life and death disease we are all living with, it really doesn't matter just how someone chats here, only the truth of their message.  Please folks, this is too important a discussion to end up being one of "reports to the mods".  We just don't need that.  

Finally, some of us are just a bit tired of the constant need to remind people that this is truly a deadly disease, so sometimes we are not as patient as we should, and if that includes me, I apologise.


P.S.  For those who know and love her; Lis sends her love, and support.  :)
« Last Edit: March 08, 2010, 07:06:22 PM by Moffie65 »
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Assurbanipal

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It's important to remind people of the deadly consequences of untreated HAART. 

But it is not enough.

Because it is not just a matter of getting people to say they will start the meds sometime.  There needs to be a way to persuade them to start when it is medically advised instead of waiting for the first sign of an OI.

And the forums, as a place where people come when they have problems, tend to make people nervous about starting meds.  Because people with side effects are actively asking questions about how to deal with them, while those without are usually silent about their blessings, people reading the forums without any experience of the drugs vastly overrate both the number who develop side effects and the difficulty of dealing with side effects when they do arise.

All right, I know for many of you this is preaching to the choir.  But it is leading up to a suggestion.

I was impressed by Risred's diary of starting meds.  I've sent people to that diary as an example of how manageable the process can be for someone starting (not to minimize in any way your experience Risred -- just that it is very helpful).  But it keeps falling further and further down the threads...

What if we, as a group, were to ask each person who announces that they are going to start meds to have a similar day by day diary.  Sure there would be some people who had bad experiences starting up that the fearful could point to.  But those stories get posted anyway as people ask for advice.  And we would have an archive of success stories to point people to (and ask them to add to) as they reach the time when they are advised to start treatment.

And because they are day by day, they could provide an immediate, compelling and persuasive set of stories.

Organizationally, there needs to be some way to find these stories., whether a separate forum or some naming convention.  But an archive of people's immediate recent experience of starting meds might
go a long ways to quelling the (irrational) fear of potential side effects.

A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline WillyWump

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Moffie,

Great post and I would like to share my experience with HIv treated with HAART and HIV left untreated.

I couldnt wait to start meds. I couldnt stand going to sleep every night knowing that the virus was having it's way with my body. I was starting to get very fatigued, my numbers were tanking so I knew it was time. I knew of the possible side effects but I enthusiastically embraced starting, because I knew the side effects outweighed the alternative..slowly giving up my body to HIV. I started the meds, had a a few annoying side effects in the beginning but these went away but these eventually faded away. Today I am happy to report I am side effect free. The meds are a non-issue in my day to day life. I dont think I am all that unusual in my experience, I believe the majority of people do not have any severe or crippiling side effects on meds. Yes, at this moment you can probably point to a hundred or so posts regarding severe side effects in these forums. But for every person who reports bad side effects here there may be hundrededs or thousands of people who have no side effects and do not post, or are not members of these Forums.

Regarding Untreated HIv. I lived it, or rather was an observer, to what can happen. My dear friend Scott had HIV. He did not take meds,  we are not sure of the exact reason, but nevertheless he never took 1 HAART pill, ever. He looked good and he felt good for years. Then suddenly one morning he woke up very sick, couldnt stand, couldnt eat, vomitting. He went to the hospital. They kept him for a week. The discovered he had cancer in the liver, pancreas, lungs, bones and his brain. Terminal diagnosis. Apparently he had had the cancer for several years (the whole time feeling great) and it had spread throughout his body. The doctors were sure it was AIDS related. They told him he had 6 weeks, gave him info on hospice and sent him on his way, he asked to start meds, they told him it was too late, the meds would have no effect on his terminal diagnosis. Scott made the rounds and said goodbye to his friends. Two weeks later he became bed ridden, a few days later he went blind.  There he lay in his bed, shitting himself, blind, babbling incoherently and crying. Thank the Lord he didnt linger much longer, he slipped into a coma and died a few days later. Before he slipped into senility he told us he would give anything to turn back the clock and start HAART years ago when his doctor recommended. Scott was 34. Scott had HIV. Scott did not take HAART, and when he decided too it was to late.

I'm of the belief that if Scott had started meds when he should have, the cancer would not have appeared or wouldn't have been allowed to spread like wildfire throughout his body.

So for me, the "potential" for scary side effects did not make me hesitate for one second when faced with starting meds. Because I looked into the face of untreated HIV and it can best be described as Hell right here on Earth.

Call the above a scare tactic, call it what you wish. I call the act of starting HAART self preservation, side affects or not.

-Will
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
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
.

Offline tednlou2

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Actually, I disagree with this -- hence the need for Moffie's original post and the dialog that has ensued in its wake. I don't know if many people living with, or at risk for, HIV really "know what happens" if the virus is goes untreated. The way I see it, AIDS and its sequalae is very much a bogeyman in this day and age... the stuff of legends. Many have heard about it, but haven't seen it or experienced it with their own eyes. Preventing and treating a disease that generally doesn't make people sick, but can eventually lead to serious illness, is often too abstract of a concept for some people to grasp. Then when you factor in treatment side effects, which are much more likely to be a reality than the modern-day threat of AIDS-related OIs, a shift in people's thinking is almost natural. This, of course, brings us to the importance of threads such as this.



Well said.

Are we arguing letting HIV go untreated while CD4's are dropping to dangerous levels?  Or, whether everyone with a detectable vl should be on meds?  If I were down to dangerous levels, I would not fear meds.  I'm getting to the point where I don't fear them so much anyway and thinking of starting sooner than later.  It is a huge decision, at least for me, whether to start at my numbers.  Different studies will tell you different things.  Many of the ones I've read have said starting by CD4 500 gives a person a great prognosis.  Then, we read about that unseen damage.  As I've said before, I've had some docs say start and others say no need to start yet.  Dr. Gallant told me a vl near 30,000 is not good.  Others say they don't worry until it gets over 50k and definitely over 100k.  I'm starting to lean toward Dr. Gallant's thinking.

From the original OP's question, is everyone talking about people letting CD4's drop to very dangerous levels and no meds or anyone with HIV and no meds?  
« Last Edit: March 09, 2010, 12:19:08 AM by tednlou2 »

Offline buffaloboy

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I think something that is being overlooked is that people don't always do what they should do. Take unprotected sex - pretty much everyone knows that they should always use a condom and yet some people decide not to and then go on to become infected with HIV. Indeed, it's that sort of behaviour which will have brought many people to this site and, possibly even, to this thread, as both authors and readers.

Perhaps it's just part of the human psyche to take risks and not heed well intentioned advice, and maybe all of our lives would have taken a different path if we'd done the things we should have done. But if anything is going to change, we need to approach it from the perspective of how (some) people actually think and behave, rather than how we would like them to.

Offline Hellraiser

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I think something that is being overlooked is that people don't always do what they should do. Take unprotected sex - pretty much everyone knows that they should always use a condom and yet some people decide not to and then go on to become infected with HIV. Indeed, it's that sort of behaviour which will have brought many people to this site and, possibly even, to this thread, as both authors and readers.

Perhaps it's just part of the human psyche to take risks and not heed well intentioned advice, and maybe all of our lives would have taken a different path if we'd done the things we should have done. But if anything is going to change, we need to approach it from the perspective of how (some) people actually think and behave, rather than how we would like them to.

Every time I read your responses it's like you've only read the portions of replies that in some way may validate or agree with what you want to hear.  I'm done with this.  I hope you live a long and healthy life, but if you continue to go without meds for whatever reason I suggest you familiarize yourself with Tim's original list of OIs so that when they start to come on you can tell your doctor which ones you have.  Over this thread.

Offline Moffie65

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Will,
Read your story last night before I went to bed, with the promise I would answer this morning.  I am truly grateful that you shared your story, including all the emotion and message.  These recounts that many of you have left in this thread are true gems, and remind us, even today with all the advancements, that this disease is still very much an unknown in so many ways.  Thanks for sharing, and now I can wipe the tears off my keyboard. 

Tednlou, 
If you go to the lessons, and read about each one of the diseases, you will find that many can and do occur with CD4s that are higher than once thought.  When to start medications is certainly a personal choice, because all of our bodies are different, all of our immune systems are a result of our lives to this point and all the things we have been exposed to.  For example, I have had malaria, cerebral malaria, hepatitis, sun poisoning, shistosomiasis, (sp?) and many tropical diseases that are not common in the U.S. environment.  This has confused many of the doctors I have dealt with, and some say I have a strong immune system, while others say just the opposite. 

In the end, doctors only know about the effects of HIV/AIDS from their experience, or books.  The science is relatively new, so many of them say things with a certain certitude, but in the end, you will learn a whole lot more here about therapy, OIs and the truth about living with HIV/AIDS far more than reliance on one doctor to give you all the answers.  I know we must trust our doctors, but you know for sure, doctors are only human and my not be the “end all” of accurate and timely information.  Study this site, and then weigh all the facts, and then make up your mind.

Buffalo,
I agree, and having been in prevention education for the last 25 years; I can tell you that many people will only do what they are going to do, even though they have all the information.  However, we must never take this as a reason to give up and not keep telling people about the reality of an HIV infection, and what that really entails.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline buffaloboy

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Every time I read your responses it's like you've only read the portions of replies that in some way may validate or agree with what you want to hear.  I'm done with this.  I hope you live a long and healthy life, but if you continue to go without meds for whatever reason I suggest you familiarize yourself with Tim's original list of OIs so that when they start to come on you can tell your doctor which ones you have.  Over this thread.

This completely misses the point.

Oh well.

Offline skeebo1969

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Every time I read your responses it's like you've only read the portions of replies that in some way may validate or agree with what you want to hear.  I'm done with this.  I hope you live a long and healthy life, but if you continue to go without meds for whatever reason I suggest you familiarize yourself with Tim's original list of OIs so that when they start to come on you can tell your doctor which ones you have.  Over this thread.

 ???

Someone needs a huggy wuggy!
I despise the song Love is in the Air, you should too.

Offline Joe K

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I think something that is being overlooked is that people don't always do what they should do. Take unprotected sex - pretty much everyone knows that they should always use a condom and yet some people decide not to and then go on to become infected with HIV. Indeed, it's that sort of behaviour which will have brought many people to this site and, possibly even, to this thread, as both authors and readers.

Perhaps it's just part of the human psyche to take risks and not heed well intentioned advice, and maybe all of our lives would have taken a different path if we'd done the things we should have done. But if anything is going to change, we need to approach it from the perspective of how (some) people actually think and behave, rather than how we would like them to.

I understand what you are saying, but how do you propose that we change how people think? You also make some very poor assumptions, the most glaring being "pretty much everyone knows that they should always us a condom". Sadly far too many people do not know good HIV/STD prevention skills, because, at least in the States, the prevention messages have been ineffective and sexual education is so dysfunctional after eight years of "abstinence only education". This does not mean that we should stop trying to educate people about HIV, but given the very limited budgets for prevention work, we generally have to use what works for "most" people, to stretch those prevention dollars as far as they will go.

Over the years, a lot of thought has gone into prevention messages and how to present the information to the public. When I visited London, I was really impressed by their STD information racks, which held about 30 or so, small leaflets, covering a range of topics, from prevention to treating HIV. They were in many of the bars and very accessible. How effective they have been, I cannot comment on, however, at least they were accessible for the people who needed such information. That's just an example of how to present information, but even those racks must be paid for and serviced by someone, if they are to remain effective. All of that takes money, usually a lot of it and budgets everywhere are stretched to the breaking point.

When you consider, that successful prevention consists of an effective message, a direct way to disseminate that information and people to keep the project going, you need organizations to run these programs, but they are also scrambling for funding, again due to limited funding for prevention work. Since funding is a real issue, the only programs that seem to be funded, are those that address the largest portion of the population possible, simply to get more bang for the buck.

We know that prevention messages are never enough, but you work with what you have. Fortunately, we have these forums, from which to share our lives and experience, as a form of prevention work. We know it is not perfect, or enough, but you work with what you have. So if some of us are frustrated at your comments, it is not that we disagree per se, it's just that we know there is a problem and you don't have to tell us that. What we all need... are solutions.

Offline buffaloboy

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''I understand what you are saying, but how do you propose that we change how people think?''

By understanding what the issues are in the first place......

People who put off starting treatment often know that something horrendous will happen to their health and yet continue to remain off HIV drugs. So perhaps the focus needs to shift away from the various possible infections and their dire consequences, and on to side effect management.

Offline David_CA

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''I understand what you are saying, but how do you propose that we change how people think?''

By understanding what the issues are in the first place......

People who put off starting treatment often know that something horrendous will happen to their health and yet continue to remain off HIV drugs. So perhaps the focus needs to shift away from the various possible infections and their dire consequences, and on to side effect management.

In the meantime, there are people literally dying waiting for meds.  Like I've said before, nobody made me quit smoking but me.  I did not wait for a Dr. to patiently coax me into it.  I also did not wait until I was having permanent health issues from it.  I quit because I knew of the health risks associated with it.  I daresay that most of us here started HAART because we did not want to die from an AIDS OI.  We want to live.  I guess the question I'd ask you is do you want to live?  If so, in time, you will have to start HAART.  There is no further discussion needed.  

You have read of people's success stories (lack of side effects from meds, healthier due to lower viral loads and increased CD4's, absence of OI's, etc).  You have also read of the significantly fewer people who cannot tolerate particular regimens and those who have no options left and have died.  It makes me wonder if you have seen people die from untreated AIDS... more specifically, the numerous illnesses associated with it that Tim took the time to point out in his OP.  Personally, I'm fortunate enough to not have seen anybody close to me die this way, and I hope I never have to.  I also hope to spare my husband, family, friends, and myself from this, too.  That's why I started meds.
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%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline buffaloboy

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''In the meantime, there are people literally dying waiting for meds. ''

I'm not doubting that this is true, but why do you think this is relevant here?

Offline David_CA

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''In the meantime, there are people literally dying waiting for meds. ''

I'm not doubting that this is true, but why do you think this is relevant here?

It's relevant because you're wanting time, energy, and resources spent to convince* people who need to be on HAART that things are gonna be peachy.  In the meantime, people are dying waiting for those same drugs... people whose declining health has convinced them that they need to start meds.

* substitute any other word that you find more suitable
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%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline bear60

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David
You're so right.  There are threads here from people complaining that ADAP funding in SOUTH CAROLINA was so low that there was a waiting list for poeple waiting to get meds.  There had been some deaths among those waiting for meds.  I am not going to look up the thread.

b boy.....what most of here at AIDMEDS dont understand is why some people would put off treatment until its too late for them to regain a healthy immune system. I speak from knowledge as my former life partner (Paul....you can read his obituary in the Memorial forum) tried to treat his HIV with diet and holistic medicine.  He became ill and died after PCP and CMV and a bunch of infections.  Had he started treatment maybe he would have lived longer.. or long enough to reach the year of the COCKTAIL.  He missed the cocktail by only a few months in 1995.  He died just before the cocktail came out.  He was afraid of taking AZT.  My current partner (Kurt) did take the AZT at that time ( 1993 to 95) and he is still here to tell about it.
It hurts me to see people here actually commiting suicide by refusing to take meds.
« Last Edit: March 09, 2010, 01:58:11 PM by bear60 »
Poz Bear Type in Philadelphia

Offline buffaloboy

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In the meantime, people are dying waiting for those same drugs...

Which people? Where?

Offline bear60

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In South Carolina b boy...

Well, here you go:  http://forums.poz.com/index.php?topic=31665.0


Oh...and a big THANK YOU to Moffie for starting this thread.
« Last Edit: March 09, 2010, 01:54:10 PM by bear60 »
Poz Bear Type in Philadelphia

Offline blackwingbear

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    • THE DARK MIND OF BLACKWINGBEAR
In the meantime, people are dying waiting for those same drugs...

Which people? Where?

I think bear60 answered that..
It's all a sham. Politics is a big game, same as the media - and same as religion. The point is to distract & control. If we're looking at what they tell us is the "big issue", we're not looking at what they are doing. In time, there will be different causes and different minorities to pick-on. All in the name of keeping the system going, and the people distracted.

Offline buffaloboy

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In South Carolina b boy...

Government(s) should ensure that treatment is available for all who need and want it. That's a separate issue, though.

Offline Moffie65

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People who put off starting treatment often know that something horrendous will happen to their health and yet continue to remain off HIV drugs. So perhaps the focus needs to shift away from the various possible infections and their dire consequences, and on to side effect management.
I guess for some of you, there is no hope.  The alternative is a mostly gruesome death, that not only affects you, but everyone you leave behind that have to pick up the pieces.

Buffalo, nobody is stating you must start or even take the medications, it is up to you.  However, if you make this choice without knowing the truth about HIV infection, then who is the fool?  My simple reason here is to teach that without meds, you will die.  Period.  Side effects from the drugs are not fatal and a mere inconvenience to a life with HIV.  Having to take drugs daily is to me a no-brainer, and it is sad that the United States, and countries all over the planet, don't have the political guts to supply HIV meds to all who need them.  That is the true meaning of "Chronic Manageable", and leaves out political attitudes.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

 


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