Re: Transcript of Today Show on Lyme

[Guest guest]

Thank you so much!

Jacqi

-- [ ] Transcript of Today Show on Lyme

Profile: One woman battles Lyme disease and insurance companies

01 December 2004

NBC News: Today , National Broadcasting Company, Inc. .

KATIE COURIC, co-host: Today, more of our series,

AGAINST THE ODDS,

Americans who overcome powerful challenges. Today national

correspondent

Stark has yet another inspirational story. Hi, .

Good morning.

MELISSA STARK reporting: Hi, . This one reveals how little is

actually known about Lyme disease. Each year doctors estimate that there

are

some 26,000 new cases of Lyme disease diagnosed. However, only 60

percent

of sufferers even realize they have it. Landau battled the

disease

for seven years before she found a cure. Landau was on her way to

achieving the American dream. A recent college graduate, she was working

for a fortune 500 company in New York City. Then one day, she woke up

unable

to move.

Ms. BROOKE LANDAU: I started yelling for my parents and they saw

something

was severely wrong. STARK: Her parents rushed to the emergency

room. Doctors were baffled.

Ms. DIANE LANDAU ('s Mom): As a parent, it was horrible. They did a

spinal tap, her first of seven spinal taps, and they determined that it

was likely that she had Lyme disease. STARK: Lyme disease is

well-publicized,

but poorly understood. The infected person is bitten by a small deer

tick, roughly the size of a poppy seed. Dr. ph Burascano is one of

the

country's leading Lyme physicians.

Dr. JOSEPH BURASCANO: Lyme is the fastest-growing infectious disease in

this country. First of all, you have to think of Lyme as two different

illnesses. The first type you think of is the more common, early Lyme

disease,

which may or may not present with a rash. Lyme disease in the chronic

form

can mimic many other illnesses. That's the problem. That's why

diagnosing

chronic Lyme is difficult.

STARK: Most insurance companies only recognize a positive blood test as

proof of Lyme disease. So despite her positive spinal tap, it was seven

years before she was officially diagnosed. Dr. Burascano estimates blood

tests

are accurate only 50 to 70 percent of the time. And your blood test was

negative? Ms. B. LANDAU: For seven and a half years, I have never had

a

positive blood test.

STARK: As a result, 's insurance company refused to pay for her

treatment. With doctors prescribing medications and running tests, her

legal

bill began to mount. How much did you battle with the insurance

company?

Ms. B. LANDAU: Oh, every day, all the time. The first year of my illness,

I spent $40,000 out of my own pocket.

STARK: That you never got back?

Ms. B. LANDAU: Never got back. And that was just the first year. I mean,

this has been hundreds of thousands of dollars. You kind of throw your

hands in the air and just sort of give up. And you just keep paying and

paying

and paying.

STARK: How frustrating was that?

Ms. B. LANDAU: That was the worst part. Because you're stuck with zero

insurance, a disease that people--the medical community and insurance

companies won't even recognize as necessarily legitimate.

STARK: decided to be pro-active. In an attempt to relieve her

chronic joint pain, doctors suggested she move to a warm climate.

chose

Miami, and began to research alternative methods of treatment.

Ms. B. LANDAU: I had no quality of life. None. I was lying in bed day

after day after day with home-care nurses coming to tend to my needs.

And I

was 27 years old.

Ms. D. LANDAU: It just had this devastating effect, I mean, for years and

years. She hardly smiled. And we would go to family events and

would be in another room just holding her head in her hands.

STARK: Brook finally found a doctor who thought he could help her. The

treatment was risky, so risky that the doctor who provided it is

currently

fighting to keep his medical license, and asked us not to mention his

name.

Ms. B. LANDAU: This treatment was not FDA approved, not covered by

insurance. They put a tube into my heart, and it pumped the antibiotics

directly

into my heart, and had me then get into a hyperbaric oxygen chamber for

30

days.

STARK: How scary was the thought of that?

Ms. B. LANDAU: They said to us that it could kill me, and it clearly

could. You get one infection into your heart, and you're done.

STARK: Despite the risks, elected to go forward.

Ms. D. LANDAU: I went down there, and I was just so devastated. She was

so

networked into the medical community and, the sick community, that it was

just horrible to see. I mean, she was living the life of an 80-year-old.

STARK: At first it didn't seem to be working.

Ms. D. LANDAU: It was supposed to be a 30-day course of treatment. For

29

days it did nothing.

Ms. B. LANDAU: On that 30th day, I got out of the hyperbaric chamber, and

my vision stabilized, my hearing came back, the joint pain, gone. The

muscle burning, gone. I went to bed that night for the first time

without

burning in my body.

STARK: With her Lyme disease gone, decided to pursue a career in

modeling and broadcasting. She moved to Los Angeles, but one of her

symptoms, painful, chronic headaches continued. At the worst point,

how much

medication were you on?

Ms. B. LANDAU: I was taking 27 pills every day. They didn't know how to

get me off all of this medication.

STARK: Dr. Graf-Radford, the head of Cedar Sinai's pain center, is

now 's doctor.

Dr. STEVEN GRAF-RADFORD ('s Physician): You're on a list of

medications this long, OK? These medications are causing your problem.

They just

want to run away immediately. And that's the hard part.

STARK: With his help, began to lessen her doses. How many pills a

day to do you take now?

Ms. B. LANDAU: As of yesterday, just one. So in one month I should be off

of everything forever.

STARK: Did you feel cured at that point?

Ms. B. LANDAU: I am cured in the sense that the Lyme disease is gone.

It's out of my system.

STARK: Brook has begun getting her life back, and is now working for ESPN

Ms. D. LANDAU: This is really is the first time that--that the old

is back. I mean, she laughs and she jokes and she's having fun. And she

just kept fighting to get that life back.

STARK: In addition to returning to work, has also become an

advocate for health care reform in regards to the treatment of Lyme

patients. But

as you can see, it can just be devastating.

COURIC: She went through so much. And I guess a lot of people are

experiencing this, right?

STARK: It is the fastest-growing infectious disease, believe it or not,

in

the US.

COURIC: Wow. All right, Stark. Thanks so much, . And

we'll be back in a moment. This is TODAY on NBC.

****TOIL for Lyme****

T = Teach tolerance

0 = Overcome ignorance

I = Initiate insurance reform

L = Labor for Lyme literacy/advocacy

[Non-text portions of this message have been removed]

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[Guest guest]

you know what? I can't watch these shows, I can't even read books

about other people with Lyme. I'm still in that stage of denial and

anger, it makes me sick to think about it all which is why it's been

so hard for me to write the book I want to write about my own

experience, looking back I just get so infuriated, and sad. I really

thought I was past this, but once in a while I just get set back.

Heh, just like my symptoms, you think you get ahead and the next day

it seems like square one.