Under Our Skin 2: Emergence Page #5

psychiatric problem.

Lyme disease is most commonly treated

with oral antibiotics

for generally 14 days.

Most people respond very quickly,

and by the time they're concluding

their antibiotic therapy,

they're almost 100% improved.

I feel completely well.

I have had no symptoms since

day three of that antibiotic.

Chronic lyme exists!

Chronic lyme exists!

Chronic lyme exists!

Chronic lyme exists!

Chronic lyme exists!

Today I'm just asking and praying

that somebody in that building over there

can develop a trace of skepticism

for what they think they know for sure

because we have this

one group of diseases

for which denial is the cure.

We get 28 days of raw antibiotics,

and then you're done.

And whatever you have,

it must not be lyme.

The infectious disease

society of America guidelines

are effectively being used

to restrict diagnosis,

to restrict treatment,

to have insurance companies

deny treatment,

to deny proper care

to lyme disease patients

across the board.

When we develop guidelines,

we create a panel

that reviews all of the

evidence that's available

to decide what is in the best

interest of patient care.

I want to emphasize one point.

Guidelines are exactly

what they say they are.

They're guidelines.

They're not rules, they're not laws.

They're designed to guide physicians

in the care of patients.

Seven years after the guidelines

were published in 2006,

nothing's changed.

The Attorney General had brought a case

against the infectious

diseases society of America

lyme guidelines authors

and said, "you must reevaluate

those guidelines"

with an unbiased panel

and update them."

Our investigation concerns

whether the anti-trust laws

have been violated,

purposefully or not, by these guidelines.

The Attorney General for Connecticut

was well intentioned but misguided.

No one on the panel

that wrote the guidelines

for lyme disease

stood to benefit

from the recommendations that were made.

So, when he suggested an

independent review, why not?

We have total confidence

in our guidelines.

Well, there was a hearing held,

and they put together a panel

to review the guidelines.

Nobody who was on the previous guidelines

could be on that panel,

but they screened

for conflicts of interest,

but they didn't screen for impartiality.

Everybody who sat on that panel

was a member of the idsa,

so it's sort of like having, you know,

general motors decide whether

Ford's cars aren't good.

It was not impartial.

During a period of several weeks,

we solicited comments

from the general public,

physicians, scientists.

We also looked at any new evidence

that has come to light since 2006.

They listened to all of the evidence,

and then they came to a conclusion.

They weren't going to

revise the guidelines.

Idsa, treat our chronic lyme today.

Idsa, treat our chronic lyme today.

Idsa, treat our chronic lyme today.

I came to listen to Gary wormser,

who's the lead writer of the guidelines,

to try and hear about if they're revising

the lyme disease treatment guidelines.

At the very end of the session,

they said they're just

in the beginning stages

of rewriting the guidelines.

To me, that's a huge tragedy,

because the guidelines

are already seven years old.

Two different areas here

we're trying to help.

So one is to make sure that you're heard.

You were heard in 2009 at the panel,

and you're heard now

and that's why we're here.

Step two is find things where

we have shared interests.

I mean, I think we're all

interested in better

epidemiology. We're all

interested in better tests.

It's interesting because one of

the things they said to me was,

we need to find the area

of things that we agree about,

and we all agree the

diagnostic tests aren't good.

And I was surprised

because they have guidelines

that say you have to have

a positive diagnostic test

in order to be diagnosed and treated.

But there's, you know...

There may be a growing

recognition on their part

that the diagnostic tests aren't good.

The problem with lyme disease

is it's deniability.

When you have a situation

like we have right now,

which is that there really

isn't an effective blood test

that will tell us all the time

whether a person is or is not

infected with borrelia,

you have a situation

of plausible deniability

for health maintenance organizations,

insurance companies, skeptical doctors.

The magic bullet right now

is clearly a good test.

Dr. Burrascano, good luck

in whatever you do.

You're a wonderful doctor.

After I closed my practice,

I went to work for a biotech company,

and one of the contracts I got

was from a lab in Pennsylvania,

and they wanted our advice

on developing a high value blood test.

Under my direction, they assembled a team

to include Dr. MacDonald,

Eva sapi and some others.

The game changed now.

This is a culture test.

It can show whether you still

are infected post-treatment.

It can show whether you

have lyme in the beginning,

even if the standard suralgia tests,

which we know are not very good,

even if those tests don't show lyme.

There is additional work

being done in Oslo, Norway.

All this is direct microscopic

examination of human blood.

Now, if you look on the CDC website,

the gold standard that the CDC

holds up as the gold standard

is growing the bug from body tissue.

Advanced labs has grown

the bug from blood,

which is a body tissue.

What does the CDC do with this?

The CDC wrote a paper

saying that advanced labs

was not to be trusted.

That all of the cultures,

70, were contaminated.

So, it looked almost

like I rushed through

an attempt to try and discredit something

without really thinking it through.

In my 30 years of practice,

I have never seen the CDC

go after one laboratory

and attempt to put it out of business.

It doesn't make sense scientifically,

but it makes sense politically.

The CDC does not want

chronic lyme disease

to have a foothold as a

legitimate medical entity

in the United States or

elsewhere in the world.

There was a rebuttal to the

study of sexual transmission

in "outside" magazine.

Paul lantos, who's from the idsa,

raised some points about

sexual transmission

that he claims make it unlikely.

I think that the people who

hold that point of view

will do pretty much everything

they can to maintain it.

The CDC uses a very restrictive

definition of lyme disease.

It's certainly restricts the, you

know, the criteria for the disease,

so it makes it easier

to get a vaccine approved.

For a vaccine to work,

you have to vaccinate people

who are not infected.

So, if we now find that

there are a lot of people

who've been infected

through sexual transmission,

then that's gonna decrease the market

for the vaccine significantly.

What has happened

in lyme disease, I think,

is really uncommon, in a way.

Research has been very insular.

It's a really tiny group of people.

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