Have you ever thought to ask yourself why the drug combos never worked? Are there other factors involved that aren’t expressed by the patient such as alcohol or a diet from McDonalds ? The drugs work for most people and you seem to focus on the failures as though the drugs fail for everyone taking them? I think I asked before, so I’ll ask again just in case you weren’t paying attention. ARE YOU SURE YOU KNOW HOW TO READ ?
> Have you ever thought to ask yourself why the drug > combos never worked?
Indeed. No different than why AZT never worked.
> Are there other factors involved > that aren’t expressed by the patient such as alcohol or a > diet from McDonalds ?
Nope. It seems that those less likely to have success are those with AIDS — the most likely to "improve" are those who don’t have AIDS. See my posting of the Gay Men’s Health Crisis 10/96 Treatment Issues — and read it this time.
Now what good is an AIDS drug if it doesn’t work for most people with AIDS? I’m not the only one asking this question. it is being asked by many researchers in the NIH.
> The drugs work for most people
No — they "work" for most people YOU know.
> and you seem to focus on the failures as though the > drugs fail for everyone taking them?
Eventually they will and they do — this is being seen now. Every person with AIDS that I know who has used these drugs has crashed — about 10 men — 3 died within months — only 1 of the 3 was symptomatic with AIDS — 1 died of kidney failure — 1 died after a MAC/PCP/CMV outbreak due to the immune suppression from your miracle treatment. The rest seem to be considering themselves lucky. I know many others on the cocktails — most of which are non-progressors of 10 years or more — all of which are not AIDS. All report some quality of life issue they didn’t have before the drugs (that is, when they were healthy). In each case, they made their own decisions and — ONLY when they asked me did I provide them the best argument on each side — pro or con. The decision is theirs NOT mine — they have to live with the consequences and I am not going to tell them what to do. I would advise you to do the same.
> I think I asked before, so I’ll ask again > just in case you weren’t paying attention. > ARE YOU SURE YOU KNOW HOW TO READ ?
Already asked and answered. I would ask the same of you, since I have covered these issues in posts that are up on the board right now — so read them — you obviously have a lot of reading ahead for you so don’t get so cocky — you don’t know ANYTHING about this disease, the research or the science — and testimonials just don’t get it.
Meanwhile, if you have compelling research, please advise — I do have an open mind — I love reading the objective science — and I get a big laugh from reading the drug company clinical trial anti-science, nonsense and outright fraud (don’t confuse the latter for the former).
> In each case, they made their >own decisions and — ONLY when they asked me did I provide them the >best argument on each side — pro or con. The decision is theirs >NOT mine — they have to live with the consequences and I am not >going to tell them what to do. I would advise you to do the same.
So what was the pro and con you provided? What evidence is there that anyone around here is telling anybody what to do with regard to use of the combinations of drugs? Seems to me most people here are providing their personal experiences or sharing information. Nobody has said "you must do the drugs." In contrast, some say clearly you must never do the drugs (which used to be your view point and I’m happy to see that it has modified).
> > In each case, they made their > >own decisions and — ONLY when they asked me did I provide them the > >best argument on each side — pro or con. The decision is theirs > >NOT mine — they have to live with the consequences and I am not > >going to tell them what to do. I would advise you to do the same.
> So what was the pro and con you provided?
The cons can be the pros, depending on what you want to do or who you are doing it to. Immune suppression is just that. If you use it to shut down viral replication by suppressing cellular proliferation, then you would have to call prednisone an antiviral, and you would have to stop this ridiculous game of calling these drugs "reverse transcriptase inhibitors" or "protease inhibitors" simply because a truckload of them were dumped in a test tube with some virus and left for 8 hours — the package inserts admit there is no evidence that these drugs work as advertised — why are the drug companies the only ones who seem to be honestly disclosing these facts?
> What evidence is there that anyone around here is telling anybody > what to do with regard to use of the combinations of drugs?
Excuse me? A joke, right?
> Seems to me most people here are providing their personal experiences > or sharing information.
And the purpose for this "sharing" of information is…?????
> Nobody has said "you must do the drugs."
Oh no… how else can you scare the hell out of 100,000 people in the US to jump on this wagon… and nobody told anybody to do AZT… or ddI…. and for that matter, I’m not writing this!
> In contrast, some say clearly you must never do the drugs > (which used to be your view point …)
This was never a "view point" of mine unless you take it out of context, which wouldn’t be the first time and I am certain it won’t be the last. For example, AZT has a valid use — but that use is not in the bodies of healthy people.
However, this crap of grouping everyone as "anti-drug" or "anti-herb" or "anti-whatever" without more qualifying evidence is a typical assassination tactic that has kept the drug activist crowd off the scientific meathooks where they belong.
Sorry, that trick doesn’t work. The chickens have come home to roost and its not a pretty picture.
W. Fred Shaw wrote: > > What evidence is there that anyone around here is telling anybody > > what to do with regard to use of the combinations of drugs?
> Excuse me? A joke, right? > > Seems to me most people here are providing their personal experiences > > or sharing information.
Not a joke and you know it, Fred. I have yet to see anyone in this newsgroup say "take the drugs." Recall my long post, "Boulton backs down" ? The whole point was to retract any semblance of having said that "the drugs work." It was, instead, to say "they have worked for me." That is the only concept I see posted here by those of us who are taking one or another combo.
> And the purpose for this "sharing" of information is…?????
Read my lips, and many posts you have perhaps missed here. There are plenty reading here who are scared and feel they need to make a decision — soon. To hear testimony from some who have had success with the combos at least gives them a start for asking questions: "What side effects have you experienced?" "At what stage of disease progression did you start?" And many more. I would never, and have never, advised anyone to take these drugs. Nor would I. It is a case-by-case thing, and every person has to make their own decision. I have had private e-mail from a few about my experiences, side effects, etc. Not even then, and in private, have I advocated more than to get the best medical advice they feel they can trust, then think it over again.
> > Nobody has said "you must do the drugs."
> Oh no… how else can you scare the hell out of 100,000 people > in the US to jump on this wagon… and nobody told anybody to > do AZT… or ddI…. and for that matter, I’m not writing this!
How do you scare the hell out of all those people? Ask "himself" or Ed Liebman. They are masters at terror and the twisting of words. You, at least, deal up front on issues and not skewing the words of others in order to frighten.
Yes, some pro-drug activists are overly enthusiastic. Personally, I would like nothing better than to shitcan the bottles of pills of which I take 40+ per day. But I can’t. Even the improvement I have seen does not mean that my immune system is up and running normally. That’s a vastly different thing than halting, or even slowing, disease progression, and perhaps for those who choose the cocktail and have success, an easily overlooked concept. Yes, I feel better. But believe me, I take care of my precious hide as if, for example, every paper cut I get is still a danger to my life.
I think a big difference between many of us taking combos who write in this group is that many who are extremely anti-drug have never actually stared death in the face (indeed, some of them — not you — can’t even face a thought contrary to their own beliefs) and felt the necessity to reach for the one possibility that held some hope, even if that hope has not yet proved out in the long term. People like me are the living, breathing, undocumented "Phase III" study of the protease inhibitors. Even if these drugs don’t work indefinitely, even if they are in the long run toxic, the perceived improvement, at least in my case, of my sense of well-being, the quality of my life from day to day, is vastly preferable to the certain death I would have faced before the end of 1996, and considerably less toxic than that death would have been. The cocktail has given me more time.
Having said that, I will also add for the record that I don’t particularly agree with the "hit early/hit hard" philosophy. I did not start taking my particular combo until the 11 1/2th hour. At the time, my doctor told me that _any_ additional infection — I was having a big MAC attack and had dropped 30 pounds — would be more than my system could withstand. It is at that point that I made my decision to take a combo. For me it worked. But, had I not been at that point, I would not have started.
>The cons can be the pros, depending on what you want to >do or who you are doing it to. Immune suppression is just that. >If you use it to shut down viral replication by suppressing >cellular proliferation, then you would have to call prednisone >an antiviral, and you would have to stop this ridiculous >game of calling these drugs "reverse transcriptase inhibitors" >or "protease inhibitors" simply because a truckload of them >were dumped in a test tube with some virus and left for 8 >hours — the package inserts admit there is no evidence that >these drugs work as advertised — why are the drug companies >the only ones who seem to be honestly disclosing these >facts?
The above is your opinion. As I said (and you snipped) I don’t entirely disagree. Prednisolone has been used with some success. The inflammatory response I believe to be part of the problem. However, "immune suppressive" is a global term. Neutropenia is not the same, for example as CD4 depletion. It is still a serious problem. Yet, there is evidence that the anti-HIV activity is indeed anti-RT or anti-protease as evidenced by the development of resistant variants (e.g., single amino acid substitutions and increased quasi-species with those resistance-conferring mutations in people with HIV who take the drugs.) Is that the only mechanism of action? Probably not.
>> What evidence is there that anyone around here is telling anybody >> what to do with regard to use of the combinations of drugs? >Excuse me? A joke, right?
No, not at all.
>> Seems to me most people here are providing their personal experiences >> or sharing information. >And the purpose for this "sharing" of information is…?????
To let people know that the combinations have really HELPED some people in significant ways. Would you rather a person with AIDS and OIs should ignore this option?
>> Nobody has said "you must do the drugs." >Oh no… how else can you scare the hell out of 100,000 people >in the US to jump on this wagon… and nobody told anybody to >do AZT… or ddI…. and for that matter, I’m not writing this!
Neither I nor you scare 100,000 people. AIDS does that just fine. Having CMV, KS, PCP, cryptosporidiosis is enough.
>> In contrast, some say clearly you must never do the drugs >> (which used to be your view point …) >This was never a "view point" of mine unless you take it out >of context, which wouldn’t be the first time and I am certain >it won’t be the last. For example, AZT has a valid use — but that >use is not in the bodies of healthy people.
So what is the valid use? In unhealthy people? Whom?
> >The cons can be the pros, depending on what you want to > >do or who you are doing it to. Immune suppression is just that. > >If you use it to shut down viral replication by suppressing > >cellular proliferation, then you would have to call prednisone > >an antiviral, and you would have to stop this ridiculous > >game of calling these drugs "reverse transcriptase inhibitors" > >or "protease inhibitors" simply because a truckload of them > >were dumped in a test tube with some virus and left for 8 > >hours — the package inserts admit there is no evidence that > >these drugs work as advertised — why are the drug companies > >the only ones who seem to be honestly disclosing these > >facts?
> The above is your opinion.
My opinion, is saturated with specific facts, none of which you have disputed as fact.
> As I said (and you snipped) I don’t entirely disagree.
That’s a firm position.
> Prednisolone has been used with some success.
Success for what? How much success is "some" success?
> The inflammatory response I believe to be part of the problem.
I would certainly say so… kind of a basic fact of immunology.
> However, "immune suppressive" is a global term.
Slippery response, but with an element of truth. Of course, as you know, the "deficiency" of immunity in AIDS — or suppression, as it is called, is that of Th1 (cell-mediated) immunity. You suppress Th1 enough and you break out with OIs. Any disagreement on this point?
When I talk about drugs that are "immunosuppressive" in HIV disease, then I am (generally as you say) talking about Th1 suppression — because for obvious reasons, this should be the primary concern of treatment — of which you will disagree wholeheartedly, correct?
> Neutropenia is not the same, for example as CD4 depletion. > It is still a serious problem.
Apples and oranges. What you don’t seem to understand is that most neutropenia is most commonly found in those using bone marrow-suppressing treatments and is usually caused by the drugs commonly used to treat HIV/AIDS, such as AZT, ganciclovir and Bactrim — and since neutropenia puts people at risk for spontaneous bacterial infections you don’t need to be a rocket scientist to see that these drugs pose a danger for worsening this disease all by themselves. (If you dispute any of this, cite your sources).
> Yet, there is evidence that the anti-HIV activity is indeed anti-RT or > anti-protease as evidenced by the development of resistant variants > (e.g., single amino acid substitutions and increased quasi-species > with those resistance-conferring mutations in people with HIV who take > the drugs.) > Is that the only mechanism of action? Probably not.
Not! The only "evidence" is in the test tube and you have been clear in your dismissal of test tube studies (at least when they provide evidence contrary to one of your treatments, like NAC).
You use the terms "resistant variants" and "mutations" interchangeably which tells me you clearly don’t know the difference between them — and if you don’t know that difference then you obviously don’t know what you’re talking about on this topic.
There is NO conclusive proof for the mutant theory although it is "generally accepted as fact" just like the rest of the science-distorted-for-treatments bullshit, but until they can show with absolute certainty that these strains are NOT normal variants, they are still playing with a VERY shaky theory — and they are using that shaky theory to conduct immoral human experimentation (they represent this bullshit theory as fact and change these drugs on that theoretical basis alone, until we arrive at the cocktails with the protease inhibitors and — lo and behold — they got their hands caught in the PI Mutation Cookie Jar when it was proven that the "mutant" strains they were trying to blame for resistance were normal variants found in frozen serum taken long before the PIs were invented). Indeed, some of the recent research in multidrug resistance is pointing in another direction entirely and a new theory is emerging that makes perfect sense — something the mutation theory never really did.
Of course, need I also remind you that they are using the term "viral suppression" now? Do you understand the implications of that shift in terminology? (Hint: remember they were talking about using these drugs for a limited time to rid the body of the virus — then when people stopped the cocktail after 1.5 years or more on it there was a viral burst within a week — even though the primary goal of undetectable VL was sustained the entire treatment time — of course when I posted the first reported case here, the outcry was "it’s anecdotal!!!" — well, we know its not anymore, don’t we???)
> >> What evidence is there that anyone around here is telling anybody > >> what to do with regard to use of the combinations of drugs?
> >Excuse me? A joke, right?
> No, not at all.
Whoa! How about a trip down memory lane.
Of course, in another item I posted yesterday, on the issue of the drugs you state:
"He’s (fred’s) advocating people do nothing and die."
That certainly looks like an message of advocacy to me! Let’s see: No drugs, you die!
Look at the dictionary definition :
ad·vo·cate (àd¹ve-kât´) verb, transitive To speak, plead, or argue in favor of.
noun (-kît, -kât´) 1. One that argues for a cause; a supporter or defender:
and let’s see:
On 96-07-21 06:41:07 EDT g…@ix.netcom.com (George M. Carter) wrote:
"I do not advocate that people take any treatment (except for nutrition and dietary supplements…"
"For example, ddI plus ddC is a combination I think is very bad since they share a similar toxicity profile (an opinion shared by many physicians). In contrast, AZT+3TC or ddI alone are probably better bets for nukes along with indinavir as a powerful combination therapy."
More non-advocacy, George?
How about this one:
"On Sat, 10 Aug 1996 01:12 in message id <4ugnl1$…@sjx-ixn2.ix.netcom.com> g…@ix.netcom.com George M. Carter) wrote:
"The new combinations are a great stride in my view."
No advocacy here either?
> >> Seems to me most people here are providing their personal experiences > >> or sharing information.
> >And the purpose for this "sharing" of information is…?????
> To let people know that the combinations have really HELPED some > people in significant ways. Would you rather a person with AIDS and > OIs should ignore this option?
Absolutely not! — it is essential to share this information but for some odd reason nobody seems to be talking from a central reference — the drug companies stay quiet and push the drugs and the activists have been strangely quiet of late — even Marty Delaney seems downright depressed these days!
Problem is — all you have talking are the inmates of the asylum — and that is to each other (except when they turn their riot in other directions … like mine). I wish ALL of them the best, regardless of what they think or how angry they are, but they are showing us a psychological profile here (unrelated to HIV, only related to selective survival) it is obvious that most of them are terrified. The reason why? Could be fear of imminent failure because NOBODY seems to have the slightest idea what the profile of a winner or loser in the cocktail game looks like. What makes one person fail and another do rather well? I’m really interested in this and have some insights, but my concern is what happens to those who fail, and what happens downline for those do well now?
Of course, those on their deathbed are the real winners — because the intervention has helped them (immunosuppressive help is fine in salvage intervention). However, there are a LOT of people using early intervention cocktails, and THAT is the group that scares me, since it doesn’t take these drugs very long to drive down the CTLs and it is clear (from Zinkernagel to Fauci) that CTL numbers are predictive of survival. The CTLs are being hammered and they look like one of the key elements (if not THE key element) to predict the course of this disease since these cells offer some redundancy for the loss of CD4 functions (thus, someone with very low CD4s and no symptoms invariably has a high CD8 count). But the garden variety AIDS doctor still thinks that the CD8s are somehow "bad" — and that is stone age immunology.
idea what the profile of someone who is a candidate for being
> >> Nobody has said "you must do the drugs."
> >Oh no… how else can you scare the hell out of 100,000 people > >in the US to jump on this wagon… and nobody told anybody to > >do AZT… or ddI…. and for that matter, I’m not writing this!
> Neither I nor you scare 100,000 people. AIDS does that just fine. > Having CMV, KS, PCP, cryptosporidiosis is enough.
I disagree completely — the viral load test is the gun the doctors use to scares them to get on the bandwagon — or else. Other factors play a role too, But lets face it, the drug activists should have considered the old saying "be careful for what you wish because you may get it"!
What we are seeing now is Panic and Plunge II — the sequel to the 1987 release of P&P I: AZT.
> >> In contrast, some say clearly you must never do the drugs > >> (which used to be your view point …)
> >This was never a "view point" of mine unless you take it out > >of context, which wouldn’t be the first time and I am certain > >it won’t be the last. For example, AZT has a valid use — but that > >use is not in the bodies of healthy people.
> So what is the valid use? In unhealthy people? Whom?
Read the last statement again — it’s pretty clear.
Have you ever thought to ask yourself why the drug
combos never worked? Are there other factors involved
that aren’t expressed by the patient such as alcohol or a
diet from McDonalds ? The drugs work for most people and
you seem to focus on the failures as though the drugs fail for
everyone taking them? I think I asked before, so I’ll ask again
just in case you weren’t paying attention.
ARE YOU SURE YOU KNOW HOW TO READ ?
Fl…@wizvax.net wrote:
> Have you ever thought to ask yourself why the drug
> combos never worked?
Indeed. No different than why AZT never worked.
> Are there other factors involved
> that aren’t expressed by the patient such as alcohol or a
> diet from McDonalds ?
Nope. It seems that those less likely to have success are
those with AIDS — the most likely to "improve" are those
who don’t have AIDS. See my posting of the Gay Men’s Health
Crisis 10/96 Treatment Issues — and read it this time.
Now what good is an AIDS drug if it doesn’t work for most
people with AIDS? I’m not the only one asking this question.
it is being asked by many researchers in the NIH.
> The drugs work for most people
No — they "work" for most people YOU know.
> and you seem to focus on the failures as though the
> drugs fail for everyone taking them?
Eventually they will and they do — this is being seen now.
Every person with AIDS that I know who has used these drugs
has crashed — about 10 men — 3 died within months — only
1 of the 3 was symptomatic with AIDS — 1 died of kidney
failure — 1 died after a MAC/PCP/CMV outbreak due to the
immune suppression from your miracle treatment. The
rest seem to be considering themselves lucky. I know many
others on the cocktails — most of which are non-progressors
of 10 years or more — all of which are not AIDS. All report
some quality of life issue they didn’t have before the drugs
(that is, when they were healthy). In each case, they made their
own decisions and — ONLY when they asked me did I provide them the
best argument on each side — pro or con. The decision is theirs
NOT mine — they have to live with the consequences and I am not
going to tell them what to do. I would advise you to do the same.
> I think I asked before, so I’ll ask again
> just in case you weren’t paying attention.
> ARE YOU SURE YOU KNOW HOW TO READ ?
Already asked and answered. I would ask the same of you, since I
have covered these issues in posts that are up on the board right
now — so read them — you obviously have a lot of reading ahead
for you so don’t get so cocky — you don’t know ANYTHING about
this disease, the research or the science — and testimonials
just don’t get it.
Meanwhile, if you have compelling research, please advise — I do have
an open mind — I love reading the objective science — and I get
a big laugh from reading the drug company clinical trial anti-science,
nonsense and outright fraud (don’t confuse the latter for the former).
good luck,
fred
"W. Fred Shaw" <freds…@primenet.com> wrote:
> In each case, they made their
>own decisions and — ONLY when they asked me did I provide them the
>best argument on each side — pro or con. The decision is theirs
>NOT mine — they have to live with the consequences and I am not
>going to tell them what to do. I would advise you to do the same.
So what was the pro and con you provided? What evidence is there that
anyone around here is telling anybody what to do with regard to use of
the combinations of drugs? Seems to me most people here are providing
their personal experiences or sharing information. Nobody has said
"you must do the drugs." In contrast, some say clearly you must never
do the drugs (which used to be your view point and I’m happy to see
that it has modified).
George M. Carter
George M. Carter wrote:
> "W. Fred Shaw" <freds…@primenet.com> wrote:
> > In each case, they made their
> >own decisions and — ONLY when they asked me did I provide them the
> >best argument on each side — pro or con. The decision is theirs
> >NOT mine — they have to live with the consequences and I am not
> >going to tell them what to do. I would advise you to do the same.
> So what was the pro and con you provided?
The cons can be the pros, depending on what you want to
do or who you are doing it to. Immune suppression is just that.
If you use it to shut down viral replication by suppressing
cellular proliferation, then you would have to call prednisone
an antiviral, and you would have to stop this ridiculous
game of calling these drugs "reverse transcriptase inhibitors"
or "protease inhibitors" simply because a truckload of them
were dumped in a test tube with some virus and left for 8
hours — the package inserts admit there is no evidence that
these drugs work as advertised — why are the drug companies
the only ones who seem to be honestly disclosing these
facts?
> What evidence is there that anyone around here is telling anybody
> what to do with regard to use of the combinations of drugs?
Excuse me? A joke, right?
> Seems to me most people here are providing their personal experiences
> or sharing information.
And the purpose for this "sharing" of information is…?????
> Nobody has said "you must do the drugs."
Oh no… how else can you scare the hell out of 100,000 people
in the US to jump on this wagon… and nobody told anybody to
do AZT… or ddI…. and for that matter, I’m not writing this!
> In contrast, some say clearly you must never do the drugs
> (which used to be your view point …)
This was never a "view point" of mine unless you take it out
of context, which wouldn’t be the first time and I am certain
it won’t be the last. For example, AZT has a valid use — but that
use is not in the bodies of healthy people.
However, this crap of grouping everyone as "anti-drug" or
"anti-herb" or "anti-whatever" without more qualifying evidence
is a typical assassination tactic that has kept the
drug activist crowd off the scientific meathooks where they
belong.
Sorry, that trick doesn’t work. The chickens have
come home to roost and its not a pretty picture.
fred
W. Fred Shaw wrote:
> > What evidence is there that anyone around here is telling anybody
> > what to do with regard to use of the combinations of drugs?
> Excuse me? A joke, right?
> > Seems to me most people here are providing their personal experiences
> > or sharing information.
Not a joke and you know it, Fred. I have yet to see anyone in this
newsgroup say "take the drugs." Recall my long post, "Boulton backs
down" ? The whole point was to retract any semblance of having said
that "the drugs work." It was, instead, to say "they have worked for
me." That is the only concept I see posted here by those of us who are
taking one or another combo.
> And the purpose for this "sharing" of information is…?????
Read my lips, and many posts you have perhaps missed here. There are
plenty reading here who are scared and feel they need to make a decision
— soon. To hear testimony from some who have had success with the
combos at least gives them a start for asking questions: "What side
effects have you experienced?" "At what stage of disease progression
did you start?" And many more. I would never, and have never, advised
anyone to take these drugs. Nor would I. It is a case-by-case thing,
and every person has to make their own decision. I have had private
e-mail from a few about my experiences, side effects, etc. Not even
then, and in private, have I advocated more than to get the best medical
advice they feel they can trust, then think it over again.
> > Nobody has said "you must do the drugs."
> Oh no… how else can you scare the hell out of 100,000 people
> in the US to jump on this wagon… and nobody told anybody to
> do AZT… or ddI…. and for that matter, I’m not writing this!
How do you scare the hell out of all those people? Ask "himself" or Ed
Liebman. They are masters at terror and the twisting of words. You, at
least, deal up front on issues and not skewing the words of others in
order to frighten.
Yes, some pro-drug activists are overly enthusiastic. Personally, I
would like nothing better than to shitcan the bottles of pills of which
I take 40+ per day. But I can’t. Even the improvement I have seen does
not mean that my immune system is up and running normally. That’s a
vastly different thing than halting, or even slowing, disease
progression, and perhaps for those who choose the cocktail and have
success, an easily overlooked concept. Yes, I feel better. But believe
me, I take care of my precious hide as if, for example, every paper cut
I get is still a danger to my life.
I think a big difference between many of us taking combos who write in
this group is that many who are extremely anti-drug have never actually
stared death in the face (indeed, some of them — not you — can’t even
face a thought contrary to their own beliefs) and felt the necessity to
reach for the one possibility that held some hope, even if that hope has
not yet proved out in the long term. People like me are the living,
breathing, undocumented "Phase III" study of the protease inhibitors.
Even if these drugs don’t work indefinitely, even if they are in the
long run toxic, the perceived improvement, at least in my case, of my
sense of well-being, the quality of my life from day to day, is vastly
preferable to the certain death I would have faced before the end of
1996, and considerably less toxic than that death would have been. The
cocktail has given me more time.
Having said that, I will also add for the record that I don’t
particularly agree with the "hit early/hit hard" philosophy. I did not
start taking my particular combo until the 11 1/2th hour. At the time,
my doctor told me that _any_ additional infection — I was having a big
MAC attack and had dropped 30 pounds — would be more than my system
could withstand. It is at that point that I made my decision to take a
combo. For me it worked. But, had I not been at that point, I would
not have started.
Best,
Wally
"W. Fred Shaw" <freds…@primenet.com> wrote:
>The cons can be the pros, depending on what you want to
>do or who you are doing it to. Immune suppression is just that.
>If you use it to shut down viral replication by suppressing
>cellular proliferation, then you would have to call prednisone
>an antiviral, and you would have to stop this ridiculous
>game of calling these drugs "reverse transcriptase inhibitors"
>or "protease inhibitors" simply because a truckload of them
>were dumped in a test tube with some virus and left for 8
>hours — the package inserts admit there is no evidence that
>these drugs work as advertised — why are the drug companies
>the only ones who seem to be honestly disclosing these
>facts?
The above is your opinion. As I said (and you snipped) I don’t
entirely disagree. Prednisolone has been used with some success. The
inflammatory response I believe to be part of the problem. However,
"immune suppressive" is a global term. Neutropenia is not the same,
for example as CD4 depletion. It is still a serious problem. Yet,
there is evidence that the anti-HIV activity is indeed anti-RT or
anti-protease as evidenced by the development of resistant variants
(e.g., single amino acid substitutions and increased quasi-species
with those resistance-conferring mutations in people with HIV who take
the drugs.) Is that the only mechanism of action? Probably not.
>> What evidence is there that anyone around here is telling anybody
>> what to do with regard to use of the combinations of drugs?
>Excuse me? A joke, right?
No, not at all.
>> Seems to me most people here are providing their personal experiences
>> or sharing information.
>And the purpose for this "sharing" of information is…?????
To let people know that the combinations have really HELPED some
people in significant ways. Would you rather a person with AIDS and
OIs should ignore this option?
>> Nobody has said "you must do the drugs."
>Oh no… how else can you scare the hell out of 100,000 people
>in the US to jump on this wagon… and nobody told anybody to
>do AZT… or ddI…. and for that matter, I’m not writing this!
Neither I nor you scare 100,000 people. AIDS does that just fine.
Having CMV, KS, PCP, cryptosporidiosis is enough.
>> In contrast, some say clearly you must never do the drugs
>> (which used to be your view point …)
>This was never a "view point" of mine unless you take it out
>of context, which wouldn’t be the first time and I am certain
>it won’t be the last. For example, AZT has a valid use — but that
>use is not in the bodies of healthy people.
So what is the valid use? In unhealthy people? Whom?
George M. Carter
- Hide quoted text — Show quoted text -
George M. Carter wrote:
> "W. Fred Shaw" <freds…@primenet.com> wrote:
> >The cons can be the pros, depending on what you want to
> >do or who you are doing it to. Immune suppression is just that.
> >If you use it to shut down viral replication by suppressing
> >cellular proliferation, then you would have to call prednisone
> >an antiviral, and you would have to stop this ridiculous
> >game of calling these drugs "reverse transcriptase inhibitors"
> >or "protease inhibitors" simply because a truckload of them
> >were dumped in a test tube with some virus and left for 8
> >hours — the package inserts admit there is no evidence that
> >these drugs work as advertised — why are the drug companies
> >the only ones who seem to be honestly disclosing these
> >facts?
> The above is your opinion.
My opinion, is saturated with specific facts, none of which
you have disputed as fact.
> As I said (and you snipped) I don’t entirely disagree.
That’s a firm position.
> Prednisolone has been used with some success.
Success for what? How much success is "some" success?
> The inflammatory response I believe to be part of the problem.
I would certainly say so… kind of a basic fact of immunology.
> However, "immune suppressive" is a global term.
Slippery response, but with an element of truth. Of course, as you
know, the "deficiency" of immunity in AIDS — or suppression, as it
is called, is that of Th1 (cell-mediated) immunity. You suppress
Th1 enough and you break out with OIs. Any disagreement on this
point?
When I talk about drugs that are "immunosuppressive" in HIV disease,
then I am (generally as you say) talking about Th1 suppression —
because for obvious reasons, this should be the primary concern of
treatment — of which you will disagree wholeheartedly, correct?
> Neutropenia is not the same, for example as CD4 depletion.
> It is still a serious problem.
Apples and oranges. What you don’t seem to understand is that
most neutropenia is most commonly found in those using bone
marrow-suppressing treatments and is usually caused by the
drugs commonly used to treat HIV/AIDS, such as AZT, ganciclovir
and Bactrim — and since neutropenia puts people at risk for
spontaneous bacterial infections you don’t need to be a
rocket scientist to see that these drugs pose a danger for
worsening this disease all by themselves. (If you dispute
any of this, cite your sources).
> Yet, there is evidence that the anti-HIV activity is indeed anti-RT or
> anti-protease as evidenced by the development of resistant variants
> (e.g., single amino acid substitutions and increased quasi-species
> with those resistance-conferring mutations in people with HIV who take
> the drugs.)
> Is that the only mechanism of action? Probably not.
Not! The only "evidence" is in the test tube and you have been
clear in your dismissal of test tube studies (at least when they
provide evidence contrary to one of your treatments, like NAC).
You use the terms "resistant variants" and "mutations"
interchangeably which tells me you clearly don’t know the
difference between them — and if you don’t know that
difference then you obviously don’t know what you’re
talking about on this topic.
There is NO conclusive proof for the mutant theory
although it is "generally accepted as fact" just like the
rest of the science-distorted-for-treatments bullshit,
but until they can show with absolute certainty that these strains
are NOT normal variants, they are still playing with a VERY
shaky theory — and they are using that shaky theory to
conduct immoral human experimentation (they represent this
bullshit theory as fact and change these drugs on that
theoretical basis alone, until we arrive at the cocktails with
the protease inhibitors and — lo and behold — they got their hands
caught in the PI Mutation Cookie Jar when it was proven that
the "mutant" strains they were trying to blame for resistance
were normal variants found in frozen serum taken long before
the PIs were invented). Indeed, some of the recent research in
multidrug resistance is pointing in another direction entirely
and a new theory is emerging that makes perfect sense
— something the mutation theory never really did.
Of course, need I also remind you that they are using the term
"viral suppression" now? Do you understand the implications
of that shift in terminology? (Hint: remember they were talking
about using these drugs for a limited time to rid the body
of the virus — then when people stopped the cocktail after
1.5 years or more on it there was a viral burst within a week
— even though the primary goal of undetectable VL was sustained
the entire treatment time — of course when I posted the first
reported case here, the outcry was "it’s anecdotal!!!" — well,
we know its not anymore, don’t we???)
> >> What evidence is there that anyone around here is telling anybody
> >> what to do with regard to use of the combinations of drugs?
> >Excuse me? A joke, right?
> No, not at all.
Whoa! How about a trip down memory lane.
Of course, in another item I posted yesterday, on
the issue of the drugs you state:
"He’s (fred’s) advocating people do nothing and die."
That certainly looks like an message of advocacy to me!
Let’s see: No drugs, you die!
Look at the dictionary definition :
ad·vo·cate (àd¹ve-kât´) verb, transitive
To speak, plead, or argue in favor of.
noun (-kît, -kât´)
1. One that argues for a cause; a supporter or defender:
and let’s see:
On 96-07-21 06:41:07 EDT g…@ix.netcom.com
(George M. Carter) wrote:
"I do not advocate that people take any treatment
(except for nutrition and dietary supplements…"
and…
In another post by g…@ix.netcom.com (George M. Carter):
"For example, ddI plus ddC is a combination I think is very bad
since they share a similar toxicity profile (an opinion shared
by many physicians). In contrast, AZT+3TC or ddI alone
are probably better bets for nukes along with indinavir as
a powerful combination therapy."
More non-advocacy, George?
How about this one:
"On Sat, 10 Aug 1996 01:12 in message id
<4ugnl1$…@sjx-ixn2.ix.netcom.com> g…@ix.netcom.com
George M. Carter) wrote:
"The new combinations are a great stride in my view."
No advocacy here either?
> >> Seems to me most people here are providing their personal experiences
> >> or sharing information.
> >And the purpose for this "sharing" of information is…?????
> To let people know that the combinations have really HELPED some
> people in significant ways. Would you rather a person with AIDS and
> OIs should ignore this option?
Absolutely not! — it is essential to share this information but
for some odd reason nobody seems to be talking from a central
reference — the drug companies stay quiet and push the drugs and
the activists have been strangely quiet of late — even Marty
Delaney seems downright depressed these days!
Problem is — all you have talking are the inmates of the asylum
— and that is to each other (except when they turn their riot
in other directions … like mine). I wish ALL of them the best,
regardless of what they think or how angry they are, but they
are showing us a psychological profile here (unrelated to HIV,
only related to selective survival) it is obvious that most of them
are terrified. The reason why? Could be fear of imminent failure
because NOBODY seems to have the slightest idea what the profile
of a winner or loser in the cocktail game looks like. What makes
one person fail and another do rather well? I’m really interested in
this and have some insights, but my concern is what happens to
those who fail, and what happens downline for those do well now?
Of course, those on their deathbed are the real winners — because
the intervention has helped them (immunosuppressive help is fine
in salvage intervention). However, there are a LOT of people using
early intervention cocktails, and THAT is the group that scares
me, since it doesn’t take these drugs very long to drive down
the CTLs and it is clear (from Zinkernagel to Fauci) that CTL
numbers are predictive of survival. The CTLs are being hammered
and they look like one of the key elements (if not THE key
element) to predict the course of this disease since these cells
offer some redundancy for the loss of CD4 functions (thus, someone
with very low CD4s and no symptoms invariably has a high CD8 count).
But the garden variety AIDS doctor still thinks that the CD8s
are somehow "bad" — and that is stone age immunology.
idea what the profile of someone who is a candidate for being
> >> Nobody has said "you must do the drugs."
> >Oh no… how else can you scare the hell out of 100,000 people
> >in the US to jump on this wagon… and nobody told anybody to
> >do AZT… or ddI…. and for that matter, I’m not writing this!
> Neither I nor you scare 100,000 people. AIDS does that just fine.
> Having CMV, KS, PCP, cryptosporidiosis is enough.
I disagree completely — the viral load test is the gun the
doctors use to scares them to get on the bandwagon — or else.
Other factors play a role too, But lets face it, the drug
activists should have considered the old saying "be careful
for what you wish because you may get it"!
What we are seeing now is Panic and Plunge II — the sequel
to the 1987 release of P&P I: AZT.
> >> In contrast, some say clearly you must never do the drugs
> >> (which used to be your view point …)
> >This was never a "view point" of mine unless you take it out
> >of context, which wouldn’t be the first time and I am certain
> >it won’t be the last. For example, AZT has a valid use — but that
> >use is not in the bodies of healthy people.
> So what is the valid use? In unhealthy people? Whom?
Read the last statement again — it’s pretty clear.
By asking this question, I wonder if YOU
…
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