Re: Non Progressors

[Guest guest]

You can define "people who take longer than average to die of AIDS" to be "Long-Term Non-Progressors", but this accomplishes very little. They still progressed and died of AIDS.

Most people who believe themselves to be Long-Term Non-Progressors are actually "Normal Progressors". People whose disease pattern follows the normal pattern of untreated HIV disease. Death from untreated HIV takes between one year and 23 years, with 50% of AIDS deaths by year 12.6 after infection.

I have a friend in Sweden who appears to be an REAL Long-Term Non-Progressor.

Whne he was first infected his viral load was 5,000 and his T4 count 550 and 32%.

Today six years later, having taken nothing and done nothing special, his viral load ranges from undetectable to 250 and his T4 count is 950 and 42%.

That's what a Long-Term Non-Progressor actually looks like. The immune system comes back and does a very effective job at bottling up HIV.

There are very few people whose labs look like this. Of course the Doctors in Sweden are doing many genetic and other tests to figure out what is different about my friend.

Many years ago on Prodigy there was a young man Jack Freidlander who claimed he was a long-term non-progressor not using antivirals of any type, lest they "weaken his immune system. I'm sure Barrow remembers him.

But it was difficult to understand his definition of non-progression once we learned his T4 count was 250 and 9%. He claimed to have never had an Opportunistic Infection, but in other posts shared which treatments he used for Thrush, and shared about being hospitalized for PCP - both offical Opportunistic Infections which define AIDS.

It was hardly a surprise when he died a couple of years later. His friends claimed he had been "killed by assasins hired by the drug companies to silence a person not use antivirals."

So you can call a person who is daying of AIDS a non-progressor, but what does it achieve?

Was Jack Friedlander a Long-Term Non-Progressor, as he claimed, or merely a sad lunatic?

> > >The percentage of actual non-progressors is quite small - approximately > >1/2 of 1%. We know this from long-term studies, such as the SF Men's Study > >of Hepatitis-B, which unknowingly monitored HIV+ persons and saved frozen > >blood samples. When HIV tests became available, researchers were able to > >determine who was HIV+ and when they became infected.> >

[Guest guest]

You can define "people who take longer than average to die of AIDS" to be "Long-Term Non-Progressors", but this accomplishes very little. They still progressed and died of AIDS.

Most people who believe themselves to be Long-Term Non-Progressors are actually "Normal Progressors". People whose disease pattern follows the normal pattern of untreated HIV disease. Death from untreated HIV takes between one year and 23 years, with 50% of AIDS deaths by year 12.6 after infection.

I have a friend in Sweden who appears to be an REAL Long-Term Non-Progressor.

Whne he was first infected his viral load was 5,000 and his T4 count 550 and 32%.

Today six years later, having taken nothing and done nothing special, his viral load ranges from undetectable to 250 and his T4 count is 950 and 42%.

That's what a Long-Term Non-Progressor actually looks like. The immune system comes back and does a very effective job at bottling up HIV.

There are very few people whose labs look like this. Of course the Doctors in Sweden are doing many genetic and other tests to figure out what is different about my friend.

Many years ago on Prodigy there was a young man Jack Freidlander who claimed he was a long-term non-progressor not using antivirals of any type, lest they "weaken his immune system. I'm sure Barrow remembers him.

But it was difficult to understand his definition of non-progression once we learned his T4 count was 250 and 9%. He claimed to have never had an Opportunistic Infection, but in other posts shared which treatments he used for Thrush, and shared about being hospitalized for PCP - both offical Opportunistic Infections which define AIDS.

It was hardly a surprise when he died a couple of years later. His friends claimed he had been "killed by assasins hired by the drug companies to silence a person not use antivirals."

So you can call a person who is daying of AIDS a non-progressor, but what does it achieve?

Was Jack Friedlander a Long-Term Non-Progressor, as he claimed, or merely a sad lunatic?

> > >The percentage of actual non-progressors is quite small - approximately > >1/2 of 1%. We know this from long-term studies, such as the SF Men's Study > >of Hepatitis-B, which unknowingly monitored HIV+ persons and saved frozen > >blood samples. When HIV tests became available, researchers were able to > >determine who was HIV+ and when they became infected.> >

[Guest guest]

You can define "people who take longer than average to die of AIDS" to be "Long-Term Non-Progressors", but this accomplishes very little. They still progressed and died of AIDS.

Most people who believe themselves to be Long-Term Non-Progressors are actually "Normal Progressors". People whose disease pattern follows the normal pattern of untreated HIV disease. Death from untreated HIV takes between one year and 23 years, with 50% of AIDS deaths by year 12.6 after infection.

I have a friend in Sweden who appears to be an REAL Long-Term Non-Progressor.

Whne he was first infected his viral load was 5,000 and his T4 count 550 and 32%.

Today six years later, having taken nothing and done nothing special, his viral load ranges from undetectable to 250 and his T4 count is 950 and 42%.

That's what a Long-Term Non-Progressor actually looks like. The immune system comes back and does a very effective job at bottling up HIV.

There are very few people whose labs look like this. Of course the Doctors in Sweden are doing many genetic and other tests to figure out what is different about my friend.

Many years ago on Prodigy there was a young man Jack Freidlander who claimed he was a long-term non-progressor not using antivirals of any type, lest they "weaken his immune system. I'm sure Barrow remembers him.

But it was difficult to understand his definition of non-progression once we learned his T4 count was 250 and 9%. He claimed to have never had an Opportunistic Infection, but in other posts shared which treatments he used for Thrush, and shared about being hospitalized for PCP - both offical Opportunistic Infections which define AIDS.

It was hardly a surprise when he died a couple of years later. His friends claimed he had been "killed by assasins hired by the drug companies to silence a person not use antivirals."

So you can call a person who is daying of AIDS a non-progressor, but what does it achieve?

Was Jack Friedlander a Long-Term Non-Progressor, as he claimed, or merely a sad lunatic?

> > >The percentage of actual non-progressors is quite small - approximately > >1/2 of 1%. We know this from long-term studies, such as the SF Men's Study > >of Hepatitis-B, which unknowingly monitored HIV+ persons and saved frozen > >blood samples. When HIV tests became available, researchers were able to > >determine who was HIV+ and when they became infected.> >

[Guest guest]

"I think the ONLY difference we have is that you think such folks are only 0.5-1% of HIV+ people and I think it may be as much as 10% and the literature I see suggests around 5%.", I  have to agree with Norm.   The MACS data support the lower figures. Barrowpozbod@...

[Guest guest]

I have a friend who is recently showing disease progression - in his lab

numbers only - after 20 years HIV+, no treatment, no disease. He WAS a

long-term non-progressor. Sorry to say that he has to think about treatment

now. I don't know if it's his viral strain or his own genetics, or maybe

even " superinfection " somewhere along the way. Wish we knew more about this.

I showed sympoms after only 3 years, myself, but have survived it for 21.

Genetics? Treatment? Attitude? All the above...?

BG

Re: Re: Non Progressors

At 10:13 PM 12/4/2006, Norm Stuart wrote:

>snip

>

>So you can call a person who is daying of AIDS a non-progressor, but what

>does it achieve?

If that is a question directed at me, Norm, then it is utterly misplaced. I

would never argue that someone who has a CD4 count of 250 as a

" non-progressor. " That's nonsense and nowhere did I ever suggest such a

thing. Don't conflate your experiences with what I have said or what I

think.

It's partly semantics. Someone who does not progress for over 10 years may

be a long-term non-progressor--to be infected that long and maintain a high

CD4 count is unusual. It does NOT mean that the group will never progress.

If they do at some point, then it is a slow progressor, not a

non-progressor. " Elite controllers " would appear to be a term to use for

those who so far have not progressed and may never progress. This is a

small number of infected individuals....and clearly, one cannot guarantee

that a " label " is protection against morbidity and mortality.

I think the ONLY difference we have is that you think such folks are only

0.5-1% of HIV+ people and I think it may be as much as 10% and the

literature I see suggests around 5%.

I hope I am the one who is correct as the more people that do not progress,

the more chance of finding out why -- and just to be happy for such folk.

M.

[Guest guest]

I have a friend who is recently showing disease progression - in his lab

numbers only - after 20 years HIV+, no treatment, no disease. He WAS a

long-term non-progressor. Sorry to say that he has to think about treatment

now. I don't know if it's his viral strain or his own genetics, or maybe

even " superinfection " somewhere along the way. Wish we knew more about this.

I showed sympoms after only 3 years, myself, but have survived it for 21.

Genetics? Treatment? Attitude? All the above...?

BG

Re: Re: Non Progressors

At 10:13 PM 12/4/2006, Norm Stuart wrote:

>snip

>

>So you can call a person who is daying of AIDS a non-progressor, but what

>does it achieve?

If that is a question directed at me, Norm, then it is utterly misplaced. I

would never argue that someone who has a CD4 count of 250 as a

" non-progressor. " That's nonsense and nowhere did I ever suggest such a

thing. Don't conflate your experiences with what I have said or what I

think.

It's partly semantics. Someone who does not progress for over 10 years may

be a long-term non-progressor--to be infected that long and maintain a high

CD4 count is unusual. It does NOT mean that the group will never progress.

If they do at some point, then it is a slow progressor, not a

non-progressor. " Elite controllers " would appear to be a term to use for

those who so far have not progressed and may never progress. This is a

small number of infected individuals....and clearly, one cannot guarantee

that a " label " is protection against morbidity and mortality.

I think the ONLY difference we have is that you think such folks are only

0.5-1% of HIV+ people and I think it may be as much as 10% and the

literature I see suggests around 5%.

I hope I am the one who is correct as the more people that do not progress,

the more chance of finding out why -- and just to be happy for such folk.

M.

[Guest guest]

I have a friend who is recently showing disease progression - in his lab

numbers only - after 20 years HIV+, no treatment, no disease. He WAS a

long-term non-progressor. Sorry to say that he has to think about treatment

now. I don't know if it's his viral strain or his own genetics, or maybe

even " superinfection " somewhere along the way. Wish we knew more about this.

I showed sympoms after only 3 years, myself, but have survived it for 21.

Genetics? Treatment? Attitude? All the above...?

BG

Re: Re: Non Progressors

At 10:13 PM 12/4/2006, Norm Stuart wrote:

>snip

>

>So you can call a person who is daying of AIDS a non-progressor, but what

>does it achieve?

If that is a question directed at me, Norm, then it is utterly misplaced. I

would never argue that someone who has a CD4 count of 250 as a

" non-progressor. " That's nonsense and nowhere did I ever suggest such a

thing. Don't conflate your experiences with what I have said or what I

think.

It's partly semantics. Someone who does not progress for over 10 years may

be a long-term non-progressor--to be infected that long and maintain a high

CD4 count is unusual. It does NOT mean that the group will never progress.

If they do at some point, then it is a slow progressor, not a

non-progressor. " Elite controllers " would appear to be a term to use for

those who so far have not progressed and may never progress. This is a

small number of infected individuals....and clearly, one cannot guarantee

that a " label " is protection against morbidity and mortality.

I think the ONLY difference we have is that you think such folks are only

0.5-1% of HIV+ people and I think it may be as much as 10% and the

literature I see suggests around 5%.

I hope I am the one who is correct as the more people that do not progress,

the more chance of finding out why -- and just to be happy for such folk.

M.

[Guest guest]

A "long-term survivor" (a term I don't particularly like) is a completely different cat from a "non-progressor".

Among HIV progressors, some will progress very quickly and some very slowly. The median time until death, when untreated, is 12.6 years after infection. The projected tail end of the curve, when untreated, is most likely 23 years plus or minus a year or so. As with any large population described by a bell curve, there will be a few outliers. But that's the basic distribution.

When you mention a person who did not show progression for 20 years, do you mean to say that their HIV viral load was undetectable for 20 years and is now positive - or do you mean their viral load remained under 60,000 for 20 years and is now higher.

Or do you mean to say they remained fairly healthy for 20 years as their T4 count steadily declined?

I have been HIV+ for eighteen years and my viral load is undetectable with a T4 count of 1,290 and 40%. I'm also very healthy and look quite normal and healthy.

But, I will be the first to admit that this magic would not be possible with antivirals and Interleukin-2. I began treatment within 18 months after becoming infected. In fact, without these magic elixers, I am quite confident I would have been dead five years ago or so. I'm not a long-term survivor. I'm just a person with HIV who is receiving appropriate treatment to control the disease long-term. Perhaps one day we will find a cure, but until that time I need to take my little elixers - just as a diabetic needs to take their insulin.

Is my success genetics? treatment? attitude? Who knows. Maybe all three. But I know from experience that my attitude and genetics are not sufficient to keep me alive without treatments.

I stopped my antivirals for one week in 1999 to prove a point. At the end of one week without antivirals my viral load was 43,200 and my T4 count was 776 and 28%.

That's higher than my worst numbers five years earlier: a viral load of 235,741 and a T4 count of 263 and 15%. But I am quite confident that another few weeks off antivirals could have produced new highs in viral load and new lows in T4 count. My body and HIV simply don't get along together.

> >snip> >> >So you can call a person who is daying of AIDS a non-progressor, but what> >does it achieve?> > If that is a question directed at me, Norm, then it is utterly misplaced. I> would never argue that someone who has a CD4 count of 250 as a> "non-progressor." That's nonsense and nowhere did I ever suggest such a> thing. Don't conflate your experiences with what I have said or what I > think.> > It's partly semantics. Someone who does not progress for over 10 years may> be a long-term non-progressor--to be infected that long and maintain a high> CD4 count is unusual. It does NOT mean that the group will never progress.> If they do at some point, then it is a slow progressor, not a> non-progressor. "Elite controllers" would appear to be a term to use for> those who so far have not progressed and may never progress. This is a> small number of infected individuals....and clearly, one cannot guarantee> that a "label" is protection against morbidity and mortality.> > I think the ONLY difference we have is that you think such folks are only> 0.5-1% of HIV+ people and I think it may be as much as 10% and the> literature I see suggests around 5%.> > I hope I am the one who is correct as the more people that do not progress,> the more chance of finding out why -- and just to be happy for such folk.> M. >

[Guest guest]

A "long-term survivor" (a term I don't particularly like) is a completely different cat from a "non-progressor".

Among HIV progressors, some will progress very quickly and some very slowly. The median time until death, when untreated, is 12.6 years after infection. The projected tail end of the curve, when untreated, is most likely 23 years plus or minus a year or so. As with any large population described by a bell curve, there will be a few outliers. But that's the basic distribution.

When you mention a person who did not show progression for 20 years, do you mean to say that their HIV viral load was undetectable for 20 years and is now positive - or do you mean their viral load remained under 60,000 for 20 years and is now higher.

Or do you mean to say they remained fairly healthy for 20 years as their T4 count steadily declined?

I have been HIV+ for eighteen years and my viral load is undetectable with a T4 count of 1,290 and 40%. I'm also very healthy and look quite normal and healthy.

But, I will be the first to admit that this magic would not be possible with antivirals and Interleukin-2. I began treatment within 18 months after becoming infected. In fact, without these magic elixers, I am quite confident I would have been dead five years ago or so. I'm not a long-term survivor. I'm just a person with HIV who is receiving appropriate treatment to control the disease long-term. Perhaps one day we will find a cure, but until that time I need to take my little elixers - just as a diabetic needs to take their insulin.

Is my success genetics? treatment? attitude? Who knows. Maybe all three. But I know from experience that my attitude and genetics are not sufficient to keep me alive without treatments.

I stopped my antivirals for one week in 1999 to prove a point. At the end of one week without antivirals my viral load was 43,200 and my T4 count was 776 and 28%.

That's higher than my worst numbers five years earlier: a viral load of 235,741 and a T4 count of 263 and 15%. But I am quite confident that another few weeks off antivirals could have produced new highs in viral load and new lows in T4 count. My body and HIV simply don't get along together.

> >snip> >> >So you can call a person who is daying of AIDS a non-progressor, but what> >does it achieve?> > If that is a question directed at me, Norm, then it is utterly misplaced. I> would never argue that someone who has a CD4 count of 250 as a> "non-progressor." That's nonsense and nowhere did I ever suggest such a> thing. Don't conflate your experiences with what I have said or what I > think.> > It's partly semantics. Someone who does not progress for over 10 years may> be a long-term non-progressor--to be infected that long and maintain a high> CD4 count is unusual. It does NOT mean that the group will never progress.> If they do at some point, then it is a slow progressor, not a> non-progressor. "Elite controllers" would appear to be a term to use for> those who so far have not progressed and may never progress. This is a> small number of infected individuals....and clearly, one cannot guarantee> that a "label" is protection against morbidity and mortality.> > I think the ONLY difference we have is that you think such folks are only> 0.5-1% of HIV+ people and I think it may be as much as 10% and the> literature I see suggests around 5%.> > I hope I am the one who is correct as the more people that do not progress,> the more chance of finding out why -- and just to be happy for such folk.> M. >

[Guest guest]

A "long-term survivor" (a term I don't particularly like) is a completely different cat from a "non-progressor".

Among HIV progressors, some will progress very quickly and some very slowly. The median time until death, when untreated, is 12.6 years after infection. The projected tail end of the curve, when untreated, is most likely 23 years plus or minus a year or so. As with any large population described by a bell curve, there will be a few outliers. But that's the basic distribution.

When you mention a person who did not show progression for 20 years, do you mean to say that their HIV viral load was undetectable for 20 years and is now positive - or do you mean their viral load remained under 60,000 for 20 years and is now higher.

Or do you mean to say they remained fairly healthy for 20 years as their T4 count steadily declined?

I have been HIV+ for eighteen years and my viral load is undetectable with a T4 count of 1,290 and 40%. I'm also very healthy and look quite normal and healthy.

But, I will be the first to admit that this magic would not be possible with antivirals and Interleukin-2. I began treatment within 18 months after becoming infected. In fact, without these magic elixers, I am quite confident I would have been dead five years ago or so. I'm not a long-term survivor. I'm just a person with HIV who is receiving appropriate treatment to control the disease long-term. Perhaps one day we will find a cure, but until that time I need to take my little elixers - just as a diabetic needs to take their insulin.

Is my success genetics? treatment? attitude? Who knows. Maybe all three. But I know from experience that my attitude and genetics are not sufficient to keep me alive without treatments.

I stopped my antivirals for one week in 1999 to prove a point. At the end of one week without antivirals my viral load was 43,200 and my T4 count was 776 and 28%.

That's higher than my worst numbers five years earlier: a viral load of 235,741 and a T4 count of 263 and 15%. But I am quite confident that another few weeks off antivirals could have produced new highs in viral load and new lows in T4 count. My body and HIV simply don't get along together.

> >snip> >> >So you can call a person who is daying of AIDS a non-progressor, but what> >does it achieve?> > If that is a question directed at me, Norm, then it is utterly misplaced. I> would never argue that someone who has a CD4 count of 250 as a> "non-progressor." That's nonsense and nowhere did I ever suggest such a> thing. Don't conflate your experiences with what I have said or what I > think.> > It's partly semantics. Someone who does not progress for over 10 years may> be a long-term non-progressor--to be infected that long and maintain a high> CD4 count is unusual. It does NOT mean that the group will never progress.> If they do at some point, then it is a slow progressor, not a> non-progressor. "Elite controllers" would appear to be a term to use for> those who so far have not progressed and may never progress. This is a> small number of infected individuals....and clearly, one cannot guarantee> that a "label" is protection against morbidity and mortality.> > I think the ONLY difference we have is that you think such folks are only> 0.5-1% of HIV+ people and I think it may be as much as 10% and the> literature I see suggests around 5%.> > I hope I am the one who is correct as the more people that do not progress,> the more chance of finding out why -- and just to be happy for such folk.> M. >