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(musical voice:) The Rainbow Show
with... oh, oh wait.. where are you?
with... (screen switch)
John: (laughing) you've got to be quiet.
Here we go. No. There we go.
Resistance is Fruitful.
This is Jonathan Barnett
and today we are going to have
a jolly ol' time.
Jonathan: I've been a member of this community
for three years.
And yesterday was my last day, officially,
on the moderation team at the website
Questioning AIDS.
I do still identify as a
dissident, as that kind of a...
bigger umbrella of people who
are questioning, or skeptical.
And... there are several factions,
or schisms in this community.
I think it's very healthy to question
the mainstream view about AIDS.
I think it's dangerous.
I think it's damaging to gay men.
I think to have advertisements for drugs,
saying, "here take this pill once a day
and you don't have to worry about getting AIDS"
is a mistake, and is avoiding
the conversation that we, as gay men,
need to have about what is and is not healthy.
So, I'm a questioner, I'm going to
self-identify as a dissident, regardless.
I don't like seeing what I see about
this sort of litmus test around ARVs.
I think the drugs are,
and I've made this clear a couple of times,
that they're not... they're a last resort,
but I'm glad they're there.
I took them because... I tell that story elsewhere,
and I don't want to get too far off on that.
What I'm seeing in the dissident community..
I mentioned that I broke away from
the mainstream point of view, because
it wasn't adding up, it wasn't working,
they were being dogmatic, and they still are.
I'm writing a blog post right now about
what I'm doing with the ARVs.
But there's this... and it's not everybody
in the dissident community, at all...
but I see it as sort of a dominant...
um, thinking, that if you don't
totally discount ARVs, if you don't
tell people not to get tested,
you're not a true dissident,
you're not really a questioner.
(John:) That's what I mean, that's what I'm taking about,
where it's gone a little bit too far.
(Jonathan:) I think that's dangerous,
and I think the evidence is pretty overwhelming
that there's some unhealthy things that are
more prevalent among some gay men,
and that we need to go back and...
Here's what I'm unhappy about, or disatisfied
with the dissident community.
They seem to be most interested in "disproving"
the mainstream, rather than going back..
let's go back to 1981, or '78, or
whatever point you want to make it,
and identify what was making gay men sick.
(John:) I like the idea of the half,
meeting the problem halfway,
when it comes to ARVs. In minimizing them.
I like what you're saying about that.
(Jonathan:)Let me go through that, if you
want me to.
(John:) That much is so obvious, I mean
this is where you should really give advice.
(Jonathan:) Well, this isn't advice,
this is telling my story.
And, I wish...
see, this is what I'm frustrated with.
The drug companies control the trials.
The Federal government is not...
you know,they're just... in synch
with them, and nobody is looking at
you know...
The dissidents are dismissing ARVs completely.
They're off the table.
They're off the table.
So, I have been dealing with other
health issues, and I've certainly... I think I've given
a lot of attention to the things
we've been told to do.
I don't just follow my CD4 and viral load.
I do follow them,
they're not the only thing I follow.
I'm not ready to dismiss them.
Let me show a couple of pictures here.
(John:) That's what I like about your approach
you take things (let me just focus the camera on you)
Even though they might not mean anything, you still
take them into acount and get what you can from them..
(Jonathan:) I'm going apologize in advance
if this seems to professorial, I'm sorry.
I'm a data geek, so... (display graphic)
So, I've been tracking my numbers for...
since 1998. (I don't know if I can point here)
This is CD4 counts, for, what... 14 years?
And for most of this time, these numbers
have been up and down. They're crazy.
But, at certain points in 2008, or so...
you know, these numbers are like, maybe 300, or so.
By orthodox standards, those would
be considered low.
I didn't worry about it. I wasn't thinking about them.
They don't bother me.
But if you look at around...
March of 2010 was the starting point...
and that coincided with an episode of Bell's palsy,
and a parotid cyst. Notice what happens
towards the end of this thirteen years.
I'm going to show some other charts.
I'll try to move through them a little more quickly.
Viral load. Again, we're looking
at a big span (of time) here,
and these time frames, the first ten years...
(John:) What year does that start with, on the bottom?
(Jonathan:) 1998. This is December of '98,
when I sero-converted, and here in 2002,
you see a little blip here?
That was, like 30,000 or 40,000.
You know, that was, "whoa", big number,
you know, back then.
The blue bars represent when I was on the drugs.
But look what starts happening here, around March of 2010.
The numbers really start changing,
and the top number goes to 1.5 million,
which throws the scale of the chart off completely.
I zoomed in a little bit. I'm slicing down.
This is just the last 17 months of CD4 counts.
This is the decline I saw.
The lowest it got to was 70.
Yeah, this was before I started taking the ARVs.
Bear with me. I'm still learning how to drive this thing.
This is the viral load,
in the same time period.
Now, they do not correlate exactly.
However, you know,
they were going from the six digits...
this is where they start talking about log value...
I mean these are changing by a factor of
adding zeros to them, up to 1.3 million
at one time.
Then they started bouncing around,
but it was still... the trend...
(John:)When I was in the hospital,
because I hadn't gotten tested in so long,
I was at ten million, my viral load.
That first six years, when I was equally sick,
not as skinny, but...
I was only at 500,000, so I...
that was another thing that...
Is this test measuring a viral load
of ***, or is it measuring the level
of infection that might be going on in our lives?
Is it a general protein measurement?
Well, let's step aside
and talk about that for a little bit.
I can come back to where I'm going
after the drugs.
Viral load is... you know...
the mainstream view is: this is counting
some segments of the "virus", and
this shows how much of that virus
is in your system.
Dissidents disagree, and say...
there's no one thing that's said.
The inventor of this test actually has dismissed it
for diagnostic purposes himself.
Kary Mullis.
But, it's something, you know.
The most common thing I hear is,
it's cellular debris.
And that seems reasonable to me
I can go for that.
Because I had these other things happening,
just before this.
I got Bell's palsy.
This whole side of my face dropped.
I got a lymph node... a parotid cyst,
that got about the size of a golf ball.
So, those things could be
throwing out a lot of cellular debris.
What's curiousóand this is where, you know,
now I'm questioning dissidents
as much as I question orthodoxy...
The ARVs are, allegedlyó
according to... this is dissident wisdom now...
ARVs are cytotoxic.
They are DNA terminators.
They kill everything, you know.
Yeah, they'll cure the disease,
but they'll kill the patient when they do it.
There's two trains of thought.
In the dissident community,
there's rarely just one train going anywhere,
there's usually a whole bunch of 'em
going everywhere. (chuckling)
So, one side says it's a DNA chain terminator,
I think that's Duesberg's
point of view, primarily,
then the other big camp, The Perth Group,
says, oh no, there's not proof it's
DNA terminator, but they do damage
mitochondria... they do mitochondrial damage.
Either way.
Doesn't matter.
You guys can go ahead and continue to have
your scientific debate.
As a patient. As a person who is dealing with these.
As an Affected person,
my question is: if these drugs are
so damaging to cells, and are just
indiscriminately killing cells,
why does this marker of cellular debris
go down when people start taking ARVs?
Because, that's what we're going to go to next.
(new slide) This is after...
the red line is when I started taking ARVs.
This is viral load.
It was up around 1.5 million.
Those drugs, in less than.. in about a month,
just knocked it down to...
not undetectable, the first number is 4100,
but it knocked it back down.
So, I'm like saying, I know I'm a layperson,
I know I'm not a scientist, but
you're telling me this is a measure
of cellular debris, and these drugs...
(John:) Well, they're not scientists, either..
(Jonathan:) Well, some of them are.
Some of them are.
So, that's a disconnect to me.
I do not know...
Let me make it really, doubly clear here.
(clearing slide)
I do not know what this PCR RNA is.
(John:) I'm still open. It could still be...
it doesn't have to be ***, basically.
It could be something... a measurement
that catches, say my MAC,
that also catches something that's
going on within you.
Something is going on, is the point.
So, I think the great thing about what
you've done... the fulfilling thing,
I don't think it's great, but it's fulfilling,
that you take your own situation,
we take our own situations,
and we try to learn from them.
Because, if try to look outwardly
to what's going on in the general public
with ***/AIDS, with the idea of immune
deficiency, it's blurry and it's confusing,
it's going to make it more tough to do it that way.
So it takes brave, somewhat...
somewhat intelligent people to
kind of look at their own situation,
maybe try to unravel and figure out what's wrong,
exactly, and what can be done.
(Jonathan:) I want to find a new community.
I want to find a community of people that's
looking for answers to why these
surrogate markers, that are supposedly
meaningless, change the way they do.
I want to go ahead and quickly show the CD4
(new slide) since the drugs.
Viral load, I don't really care about...
if my CD4 had not declined and the viral load
(had increased), I would not have started the drugs.
I did not start the drugs because of the viral load.
I did because my CD4s were plummeting,
and I don't buy the argument
that they're meaningless.
So, this is the other piece, after the drugs.
The CD4 is not responding quickly,
but it's... the decline has stopped.
This little red dot (pointing) here,
where they dipped, actually that was
the test taken in the hospital when
I was in there with shingles.
I find it kind of interesting,
when I get a viral infection,
that the body is supposed to mount
a response,
the CD4 actually dropped.
So, then... for those who might be watching,
who dismiss those two markers
and say...
I've been accused of being, you know,
you're focusing on meaningless surrogate markers.
These mean nothing.
Okay. Fine
Those are not the only things I follow.
You know?
You are the one who is fixating on them,
I actually do a lot of things. (new slide)
I'm going to try to bring
a whole bunch of information together
in a short.
Organic Acid Tests.
These are tests of your urine.
They don't draw your blood,
you pee in a cup.
And they measure metabolites.
This is an incredibly helpful test.
These is five tests, over a period of,
from the end of 2010.
I get these done at my othomolecular doctor.
There are 72 markers
According to the tests, I had fungal and bacterial
overgrowth in my gut.
I had unbalanced neurotransmitters.
During these first four tests here,
I was doing intravenous vitamin C,
ultraviolet blood irradiation.
I was making a little bit of an effect.
But here (pointing) 23, 19, 21
out of 72.
That's what, a third or so of these markers
are out of range.
And they were sending a strong, loud message:
you've got problems in your gut,
and it's fungal and bacterial...
After the red bar, again is the ARVs,
(shrugging)
(John:) I don't recall having that test, but
I'm pretty sure I had a lot of growth going on.
(Jonathan:) You'd have to find somebody
that's outside the mainstream.
My family doctor, I love her dearly,
because she's extremely accepting,
and she's very curious about these,
but...
And they are covered by Medicare,
so I assume they're covered by most insurance.
They're very revealing and informative
The point being, it changed those numbers,
when none of these other things were.
(John:) I understand the dissidents..
the hard-core dissidents are, you know,
you might seem to be a little too dependent
on those numbers, but again
you're not just looking at those,
you're taking everything into account.
(Jonathan:) I'm trying to.
I mean, I have a whole hard drive...
(John:) As much as you can.
(Jonathan:) I don't just go to AIDS doctors.
I go to an orthomolecular clinic, and...
what's hard for some people to understand...
You know I've been fighting a cough for
two weeks now, and I finally went
to my doctor today.
Because... I could go to a holistic doctor,
a Chinese doctor,
acupunturist, that's going to cost me
$70 to $100.
If I get herbs, that's another $50-60.
I have insurance.
I can't afford to live in this world
without insurance.
So... that sucks.
But it is also a fact of life.
And a lot of people fighting with
poor health are...
poor. (chuckling)
They can't rent cars and drive four hours,
spend the night go to a clinic
and...
Go ahead.
(John:) That's what I was trying to say before.
I kinda' felt like the conversation went
is it a gay or straight world...
was a problem a gay or straight problem..
are they gay or straight problems,
but it's really a have and not-have world.
When you want to look at what's going on,
the cause and effect of everything.
It comes down to that. It's a classist issue.
It has nothing to do with race.
It has nothing to do with *** orientation.
(Jonathan:) Anybody that knows me will know
that resorting to drugs, to ARVs is,
in my mind, last resort, because
I was so messed up by 2006
(new slide)
I had been prescribed 24 prescription drugs.
Look at some of those.
Human growth hormone,
rHGH is human growth hormone,
I was on compassionate use,
that was $1,000 a month, uh Provigil...
(John:) DAMN!
(Jonathan:) Provigil, which is a,
when I got the generic it said "amphetamines".
Celebrex,
Effexor,
Klonopin,
Vicodin,
Actos
this... (stuttering) I quit all of them in '07,
and that's part of my story.
And none of those were *** drugs, right?
You know?
(John:) That's why I drew the line.
Because the ARVs make your cholesterol
go high, now I need a cholesterol pill.
I said no.
Thanks for telling me my cholesterol is high.
I'll do what I can to balance it out
by avoiding certain foods, and I did.
Yeah, it's going to be one drug leading to another...
I know what's next: your cholesterol pill is
making your sodium level go, you know?
I'm not taking that. Get the hell out of here.
The important thing is we have...
I mean it may not always be easy,
because I was talking about that emotional
weight some of us have,
or some kind of mental block is going on
at certain times of our life,
but it feels good to know that,
maybe there is no magic solution,
no magic potion,
no magic food,
but all around, we do have some say
in our health. So I'm trying to focus on that, at least.
You have to, in your own way, I mean,
I'm glad you tried what you tried,
because I would never have tried the vitamin C...
(Jonathan:) I had help.
I had help.
I had help from... I hope that if they're
listening or watching out there,
they don't take offense...
I have sugar daddies.
(laughing)
I have friends who have been willing to help
contribute financially so I can do this.
And part of what I'm doing,
why I'm doing
what I'm doing,
documenting...
is... I don't know what else I can do.
Maybe somebody can make some sense of this.
And why is our dissident community...
and let me...
I don't want to dis,
but also think people need information.
The leading organization
in the AIDS dissident community
has raised and spent
almost a quarter of a million dollars
over four years.
On what?
You know?
Where is the record tracking for people
doing these things, like I am?
Where is the system for analyzing this data,
and seeing what we can gain from it?
Can I go on to the next, and the last
piece of this, because
I'm trying to write a blog post,
and it's very difficult.
You are getting a coup here,
because this has not been publicized yet.
I have been on these ARVs since May,
and people think,
especially some of my dissident friends,
assume...
Assume that I'm taking
Highly Active Antiretroviral Therapy (HAART).
I'm taking a three or four class cocktail.
That I'm taking Atripla, or Truvada,
or something...
And I'm not.
Because I am so horrified of these drug combos,
I did my own research,
I've been in touch with people in Europe,
(new slide)
I went to the Mayo Clinic,
and on the left is the recommendation
for the HAART cocktail
they recommended for me.
The top one, Prezista...
the first two are protease inhibitors,
I forget what Isentress is called,
it's one of the newer drugs,
the Epzicom is NRTI,
Nucleoside Reverse Transcriptase Inhibitor.
These are the drugs...
lamivudine is a relative to AZT.
This little pill on the bottom
is the killer pill.
This is the one that has everybody
so upset about being a chain terminator
or mitochondrial damage.
And I'm not saying these other drugs
do not have damage, but..
all of these in combination have an effect
other than just reducing the viral load.
On the right is what I'm actually taking.
It's called
reduced dose,
or low dose boosted darunavir monotherapy.
The top pill is darunavir,
it is based on a natural substance found in fungi,
it's a natural protease inhibitor.
The Norvir is also a PI, and it's
not a very good... I mean, it's not
a healthy drug. It's got some bad effects.
But it's a booster.
Notice the dosage on the Norvir,
it's 100 mg.
When it first came out, I believe,
they started at 1600, then 800.
What I'm trying to get across is that
the dosages have been reduced,
and, what I'm trying to accomplish is...
What is the toxicity level of these two regimens?
How much am I reducing my risk of liver damage
and failure by not taking the chain terminator
slash mitochondrial damaging drugs,
and not taking full doses,
I'm taking them half-dose, and...
(new slide) This is what they did.
Half-dose monotherapy knocked the hell
out of that viral load, you know?
It has stopped the decline in the CD4.
Whether you believe in those markers or not
is irrelevant.
What is important, and what I'm going to share...
and please, before anybody does this,
you talked earlier about the control thing.
When you start going to an AIDS doctor,
and you start getting assistance
paying for these drugs,
they control you.
And that is a fact.
That is a problem.
Don't do this unless you are prepared,
you have support,
you know...
I don't know what I'm doing!
I know I'm taking risks.
But, here's what pisses me off
about mainstream AIDS medicine..
the system...
is that they want to insist that we all take
these fistfulls of pills,
when it's not necessary.
And I'm going to stop, and let you talk,
because I get going too far...
Let me say this, though, about what I'm doing
for those who are watching and listening.
Do a search.
Google "darunavir monotherapy".
There have been trials for over three years
on this protocol.
Not on the level I'm doing,but
they know... in Europe...
this is in France, and, um...
I forget now what country in Europe..
no problems with resistance,
extremely good results with this.
They know this, but do you see
poz.com or aidsmeds.com advocating
that maybe, if you feel like you have to do this...
and I said I was going to stop, and I'm not.
This is what I'm doing.
I have other friends who are taking their
Atripla every other day...
every fourth day.
I know people who are, you know,
doing all kinds of intermittent
and interrupted treatment.
And I'm like you, John,
I don't know when...
I don't know how to know when to quit them,
I am going to quit these drugs again.
I don't plan to stay on them.
I'm not going to.
(John:) My first round with them,
I was put on five pills.
This validates what you're saying.
Atripla is a three-in-one pill, and then two more...
no three more on top of that,
Norvir, Reyataz and...
I can't remember what the other one was.
Something else in the mix.
By then I started realizing...
of course, it's a three-drug cocktail at least,
so why am I on five or six pills?
I said, you know, these doctors aren't
going to tell me to stop taking all these pills,
my doctor never said, stop.
I stopped.
And within that two and a half year range,
I continued to test my CD4 levels
and my viral load, and with just taking
Atripla by itself,
my viral load was fine.
My CD4s went up to about 500 something,
and stayed around there.
The second time around,
I was put on a different regimen, of course
even though I was supposed to now be immune to them,
he had me on them anyway. Reyataz and Norvir,
now with Isentress and Truvada.
The Isentress... theTruvada is I think a two-in-one and
Isentress is one pill. But the only thing I
need to really be taking,
according to common sense.
So, after two months of being in the hospital,
when I came home, I stopped taking the Norvir,
and I stopped taking the Reyataz,
and my viral load's continually went down,
and my CD4 had climbed up.
It's about 400-something now.
My viral load is a hundred, which is
like, 80 points from undetectable,
or 50 points from undetectable.
That was back in November when my last test,
which was only four months after me
being really sick and starting the pills.
So it validates what you're saying,
and then it's making me realize, hey...
well, I am going to stop taking them altogether,
I don't know about testing out the minimal damage...
as you know my goal is to figure out
how I can best take care of myself without them.
(Jonathan:) The pharmaceutical companies
fund the research, for the most part,
and there's no incentive for them to find...
to find ways to reduce the number of pills
that a a person is prescribed.
I think they have reacted by lowering doses.
I think it is in their interest
to reduce the toxicity.
They don't get...
it's to their advantage to do that,
so they have been reducing the doses,
but this idea of HAART...
and... the other...
and you said it, but I want to emphasize it, too,
for anybody facing a positive diagnosis.
Don't, don't... oh... how do I say this?
Question! Question whether or not
it really is wise to start taking
these drugs just because you get a
positive test result.
Or, if you're feeling healthy,
there's nothing else wrong with you,
the doctors are going to tell you that
you're better off starting early.
What happened to...
That was what they told us in '98,
when I was tested positive:
"hit it hard, hit it early".
Then the guidelines, quote unquote,
capital "T", capital "G",
The Guidelines
said no, the risk is too great.
What has changed?
They're going to say the drugs are better,
and improved.
Well that is just silly.
The new drugs, so many of them...
all the drug cocktails, for the most part
include two NRTIs, and those are old,
15- or 20-year-old drugs.
They've just been recombined.
So, you know, that's the skepticism
I have about the mainstream.
I've already told you I have skepticism
about some of the dissident memes,
So, I've told you before, I'm finding myself...
(video and audio stream dropped)