Under Our Skin Page #7

and both at the same time,

and there are patients who sometimes

are in open-ended years of therapy

because of this very problem.

We have not been able

to demonstrate the persistence

of the bacteria,

so to treat for months and months

is really based on guesswork,

on conjecture,

and not based on any scientific data.

If I had not been able to find doctors

who would soak me

in antibiotics for years,

you wouldn't be talking to the guy

that you're talking to right now.

The folk myth is somehow that

antibiotics are bad for you.

I just have to say,

they're certainly not bad for you

if you've got a fatal infection.

This disease has taken over my

whole life.

It's been a horrible journey.

Every day, driving home,

I would think of driving a car

off the road or something like that.

I said to my mom, "You know,

it would be okay with me"

if I didn't wake up this time."

I said,

"God, take me home tonight."

It was not even a request.

It was a demand.

What's gonna happen to me?

"I don't want to die."

I am scared.

I'm very sad,

'cause I don't know what to do.

I'm going downhill,

gradually down, down, down, down, down.

The worst part is knowing

that you're just not a normal person.

Chronic Lyme disease,

it's kind of the disease du jour.

There's no evidence that I can find

to support the concept

that there is

a chronic Borrelia infection

after treatment.

That kind of situation

has been referred to

as post-Lyme syndrome

or post-Lyme symptoms.

Those symptoms may be due

to the aches and pains

of kind of daily living.

The Infectious Diseases

Society of America

just published

their Lyme disease diagnosis

and treatment guidelines,

and it's been a huge disaster

for the Lyme disease community.

They say that Lyme is easy

to treat and easy to cure.

They're saying that two weeks, typically,

will cure most cases of Lyme,

and they say that chronic Lyme

doesn't exist.

If people have symptoms

beyond one two-to four-week

dose of antibiotics,

they have something else,

and they send them to a psychiatrist

or give them some pain meds

or some steroids

and send them away.

If you look at the new IDSA guidelines,

it's a very threatening document.

It's very restrictive.

So it almost was designed

with a purpose in mind

to restrict the treatment of Lyme.

A handful of people

are pretty much the gatekeepers

for information about this disease.

Out of 400 references

that they posted

at the back of the guidelines,

half of them were based on articles

that the panelists

or people in their labs

had actually written,

so it's not like

they went through and looked at

the whole body of Lyme research

to come up with the best recommendations.

They looked at a small group of articles,

about half of which

were written by themselves.

These guidelines are based

on the best scientific evidence that...

From more than 25 years of study.

It completely ignores

a worldwide body of literature

that is in contradiction

to what they're saying.

We're not gonna ignore good science,

but the science isn't there.

We had begun deliberations,

and we were going to go over

the late and chronic stage.

We never got to discuss late

and chronic Lyme disease.

There seemed to be pressure from the IDSA

to put out something,

even though we couldn't agree,

so what happened was,

Dr. Wormser did take over

the chairmanship on the guidelines

for Lyme disease,

and we never met again.

We just said, "Here are the guidelines",

and you can sign them

and agree or not."

They're written in almost legalese terms,

like this could be a document

used in court cases,

maybe against physicians,

or maybe for insurance companies

to justify cutting off treatment

to their patients

'cause these are the guidelines.

Really, those guidelines

reflected the idea

of one or two people,

but they've been misused

by insurance companies

who don't want to pay

for treatments because

that particular guideline says,

"We don't know

if chronic Lyme disease exists."

Well, the insurance company

has refused to pay

$10,000 worth of bills

having to do with my trips

to see Dr. Burrascano.

They have now required me

to see another doctor.

This particular doctor

apparently is a fella

who works mostly

for the insurance company.

What he'll do will be

to cite the IDSA position

that there's no such thing

as chronic Lyme disease

to support a conclusion

that the insurance company's

already made about me.

They don't want to pay.

Rather than make the assumption

that two to four weeks

of antibiotics is enough...

Where did anybody get that idea

from an infectious disease?

Tuberculosis is not treated

in two to four weeks.

Hepatitis, a year to treat that.

HIV, indefinitely.

So we're not talking about new concepts.

We're talking about concepts

that have not been,

for whatever reason, applied.

This doctor's controversial

diagnosis and treatment

of Lyme disease

with powerful intravenous drugs

could very well cost him

his medical license.

The evidence will show

that Dr. Jemsek believed

the IDSA guidelines

to be flawed, to be wrong.

I respect the IDSA tremendously.

I belong to the IDSA.

The Lyme philosophy

is run by about 12 people

who have been doing...

The same 12 people for the last 15 years,

and they haven't really changed anything.

I tried to influence the IDSA

through a series of letters

with the president and the chairman

of the guidelines committee.

We pleaded with them

to open up the process

about Lyme guidelines.

He has been working

really hard for the last year

to try and get the IDSA board

to listen to his suggestions

for the treatment of chronic Lyme,

and now he's before

a medical board review,

and it makes you wonder,

you know, is this a retaliation?

Furthermore, for each of these patients,

Dr. Jemsek prescribed

a course of not oral

but intravenous antibiotics

to be administered

to the patients for months on end.

Long-term antibiotics

provide no additional benefit,

and it's not that this is safe.

There are many complications

to long-term antibiotic therapy.

I was a patient of his for 7 1/2 years,

diagnosed with Lyme's disease,

wholeheartedly believed him,

and never had Lyme's disease.

My wife did not sign up

to be a test subject.

She was told she could be cured

to the disease that she supposedly had.

Three years ago,

you wouldn't have thought

she'd live another two months.

He literally saved her life.

No question about it.

If I hadn't seen Dr. Jemsek,

if he wasn't available,

I don't know that I'd be here

talking to you.

If Dr. Jemsek

doesn't get cleared,

there's a message that's gonna be sent

to the other doctors in North Carolina

that it's not safe

to take a Lyme patient on

and treat them.

We can't have that happen.

I don't know what we would do.

It is difficult for doctors

who want to stand up

and help these patients

because is it a political disease

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