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Downloaded from
YTS.MX

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Official YIFY movies site:
YTS.MX

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[ambient nature sounds]

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[serene music]

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♪ ♪

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[bird squawking]

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[bird squawking]

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[birds squawking]

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- [blowing softly]

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[blows]

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There's a bunch of 'em
on this bird.

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Several of 'em right here
on the top of the head.

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There's another one
just loose.

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And just dropped.

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[chuckles]

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We may not see that one again.

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This is really quite unusual.

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Two of 'em just fell off here.

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They're all apparently
completely engorged,

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and ready just to fall off.

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[music builds]

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- Here's one.
Here's one.

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Here.

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Here. Here.

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So that's 81 larvae
in one 30-meter drag.

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- We have this project

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where we're testing ticks

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from all over the country.

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These are ticks that are coming
into contact with people.

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- Texas, New York,

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Virginia, Florida,
Pennsylvania, Missouri,

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Oklahoma, Wyoming, California,

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Georgia, Ohio,
Indiana, Nevada,

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Alabama, North Carolina.

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- Ticks are not just
in the Northeast,

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where we classically
think they are.

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They're in the South.
They're in the far West.

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And that means that
these things are everywhere.

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[suspenseful music]

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♪ ♪

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- There is an epidemic

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disease spreading across

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the United States.

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It's called Lyme disease.

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It's serious and can be fatal.

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- As it digs in
for a meal of blood,

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it can inject
the germ it carries

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right into your bloodstream.

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Shaped like a corkscrew
and called a spirochete,

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first cousin of the spirochete
that causes syphilis,

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and equally elusive.

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- The disease causes symptoms
that look like dementia,

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Alzheimer's disease,

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multiple sclerosis, ALS.

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- Meanwhile, debate is growing
over the proper treatment

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for Lyme disease.

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all: Lyme is spreading!

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- Most cases respond

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to treatment with antibiotics,

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but others do not.

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Whether they suffer from
a chronic form of the disease

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is a hotly contested debate
among doctors,

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patients,
and insurance companies.

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- There is a public perception
that Lyme disease

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can routinely present
in a myriad of ways.

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That is incorrect.

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- Right now,
my hands are burning.

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My feet are burning.

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Every joint in my body

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hurts all day.

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That's Lyme disease.

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- You brought a tick.

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- The Lyme disease, the ticks,
they're everywhere.

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- Last year, there were cases
reported in 24 states.

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- 37 states.
- 43 states.

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- 45 states.

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- And it may be as close
as your backyard.

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[suspenseful music]

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♪ ♪

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[ambient noises]

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- [sighs]

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I get a really guilty feeling
when I come down here.

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Because, uh, you know,

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I guess it's
about starting something

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that I was never able
to finish.

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And it kind of just reminds me

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of when life used
to be normal.

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[soft dramatic music]

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♪ ♪

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It's really hard to make people
understand what's at stake.

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It's so much more than
just suffering and disease.

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[kids vocalizing]

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It's like an atomic bomb
drops down on your life

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and just turns everything
upside down.

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Tons of medications.

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These are pill organizers.

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Oxygen.

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Empty meds.

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Those are all full.

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This is what life became.

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I--I would let it all burn

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just to see Julia walk.

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Let's see you go. Do it.
Let's see you go.

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- As a kid, I was very eager.

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I was very active.

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I loved to dance.

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And I used to love
to ride my bike.

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- Feeling good?
- Fine.

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But those things about me
started to change.

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Even though I knew
something was wrong,

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I never imagined
it would be this.

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Like a week before I started

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to get seriously ill,

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well, I started
to notice it was hard

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to get out of bed
in the morning.

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And you know,
everybody has those days

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where they can't imagine
waking up.

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But it was every day,
and it took me, like,

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an hour to get out of bed.

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The second week
that I was sick,

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I was just sitting in class,

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and my legs went numb.

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- The school called me,
and they said,

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"Something is seriously wrong
with Julia.

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You need to get here
right away."

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When I got there,

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I found Julia
in the nurse's office,

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and she was just lifeless

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across two chairs.

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And I went to go nudge Julia,
and I'm like, "Julia. Julia.

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What's the matter?
What happened?"

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She's like,
"Dad, I can't see."

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And she said,
"I can't feel my arms,

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and I can't feel my legs."

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So I took her straight
to the hospital.

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Julia was tested
for everything several times,

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not just once, and everything
comes back negative.

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It was a very confusing time.

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I felt like Julia was dying.

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So I spent a lot of time
researching all her symptoms.

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Julia's doctor would come
to me and say,

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"Did you find anything else
that we could test for?"

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So I would give her a list,

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and she would run tests
for everything I gave her.

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Again, I put in the search
with Julia's symptoms,

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and Lyme disease comes up.

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And I said,
"I have to read this."

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And then I started
researching the area

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that we vacationed in,

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the area around our house.

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There's Lyme disease
in these areas.

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The story is told very clearly

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just looking
at her medical records.

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You know,
Julia got bit by a tick

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when she was nine years old.

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She went undiagnosed
for the next two years.

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I felt like somebody
threw a bucket

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of ice water over my head.

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I called Josephine.
I called the kids.

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I--I tell them,
"I know what she's got.

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She's got Lyme."

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And when the doctor came in,
it was like night and day.

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She went from being this
wonderful, supporting doctor,

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willing to try anything,

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to adamant, "No, impossible.
This is not it."

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[inquisitive music]

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♪ ♪

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I mean, it was almost like
as if we were using profanity,

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like "Lyme disease"
was a bad word.

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They saw nothing wrong
in the laboratory test,

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and they figured
she must be faking it.

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- I remember just hearing that
and, like,

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I--I couldn't believe it.

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Like, I'm having
real symptoms.

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I was comatose.
I was losing my hair.

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- Fever, flaccid paralysis.

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How could she be faking fever?

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The color blue.
She was blue in color.

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The doctor insisted that this
had to be conversion syndrome.

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I felt like we were
being attacked.

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And I felt like I had to start
recording what was going on.

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- [sniffles]

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She was only 11 years old.

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You know, and she had a--

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she had to put up
an argument like that.

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The first thing I think of is,

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how many people
go through this

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and then just go home
and suffer in silence?

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[birds singing]

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- I came to the Lyme disease
controversy as an outsider,

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as an investigative reporter

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who wanted to find out

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what was going on.

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I went into it intending

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to look at the trend
in Lyme disease cases.

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Was government doing enough
to control ticks?

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I also wanted to know
why I could get a vaccine

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for my dog but there was none

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for my children
and grandchildren.

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[tense music]

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♪ ♪

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The main question is whether
Lyme disease is chronic.

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Does it respond
to the short courses

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00:13:12,167 --> 00:13:14,545
of antibiotics
that are recommended?

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00:13:16,421 --> 00:13:18,841
By and large, a small group

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00:13:18,882 --> 00:13:22,052
of researchers
and government officials

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00:13:22,094 --> 00:13:26,598
basically say short courses
of antibiotics cure.

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00:13:30,018 --> 00:13:32,479
There was another side,
though.

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I found patients who had been

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to 10, 15, 20 doctors,

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and they still had lingering,
serious symptoms,

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and were tired
of being ignored.

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What I found
after two or three stories

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00:13:53,165 --> 00:13:58,463
was that I had waded into one
of the most controversial,

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00:13:58,505 --> 00:14:04,636
divisive, and vicious medical
debates in medicine today.

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00:14:05,804 --> 00:14:08,765
[sweeping music]

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00:14:08,807 --> 00:14:12,895
♪ ♪

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00:14:12,936 --> 00:14:15,355
- There is a medical detection
story in the making.

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00:14:15,397 --> 00:14:18,066
It deals with arthritis
and the possibility

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00:14:18,108 --> 00:14:20,861
that a type of arthritis
may have been uncovered

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00:14:20,903 --> 00:14:23,488
which is caused
by an insect bite.

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00:14:24,573 --> 00:14:26,241
The outbreak
of arthritis is centered

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00:14:26,283 --> 00:14:28,368
in Lyme, Connecticut,
a small town located

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on the Connecticut River.

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00:14:30,204 --> 00:14:32,289
In the past three years,
there have been 51

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00:14:32,331 --> 00:14:34,750
reported cases
of the mysterious arthritis.

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00:14:34,790 --> 00:14:36,877
Several adults
have been treated,

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00:14:36,919 --> 00:14:39,671
but most of the victims
are children.

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00:14:39,713 --> 00:14:42,007
- So in the early 1970s,

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00:14:42,049 --> 00:14:45,385
Allen Steere is
a newly minted rheumatologist

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00:14:45,427 --> 00:14:48,931
who has also studied
epidemiology, namely,

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00:14:48,972 --> 00:14:52,518
"How do we define
and count diseases?"

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00:14:52,559 --> 00:14:54,436
He's the guy from Yale

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00:14:54,478 --> 00:14:57,648
who answers the call
of a young mother

235
00:14:57,689 --> 00:14:59,983
who reports that two
of her children

236
00:15:00,025 --> 00:15:03,403
have been diagnosed
with juvenile arthritis,

237
00:15:03,445 --> 00:15:05,280
as have a number of others.

238
00:15:06,240 --> 00:15:08,700
- Let me ask you, Dr. Steere,
how did you get on the trail

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00:15:08,742 --> 00:15:11,495
of this particular form
of arthritis?

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00:15:11,537 --> 00:15:14,414
- Frank, a number of parents
in this community

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00:15:14,456 --> 00:15:16,625
were concerned
that so many children

242
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seemed to have arthritis.

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00:15:18,669 --> 00:15:21,880
This is where the medical
detective story comes in.

244
00:15:21,922 --> 00:15:24,716
Actually, like a detective,

245
00:15:24,758 --> 00:15:27,511
you try to determine
where the people were

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00:15:27,553 --> 00:15:30,889
when they got their illness,
when it occurred,

247
00:15:30,931 --> 00:15:33,016
where they were
in relation to one another.

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00:15:34,518 --> 00:15:37,813
- In 1977,
he publishes a paper

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on an epidemic of arthritis.

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00:15:41,108 --> 00:15:43,986
Dr. Steere found that 25%

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00:15:44,027 --> 00:15:47,614
of that original Lyme disease group
had something of a rash,

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a bull's-eye rash.

253
00:15:50,158 --> 00:15:53,245
And he also links this illness

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00:15:53,287 --> 00:15:55,247
to the bite of a tick.

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00:15:56,373 --> 00:16:00,002
But as time went on,
his focus changed,

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00:16:00,043 --> 00:16:04,673
and Dr. Steere was recognized
in the Lyme community

257
00:16:04,715 --> 00:16:07,384
as someone
who was not their ally.

258
00:16:07,426 --> 00:16:10,721
all: Lyme is spreading!
Lyme is spreading!

259
00:16:10,762 --> 00:16:14,474
- All we want
is long-term treatment.

260
00:16:15,684 --> 00:16:18,437
- If a patient thinks
that they have Lyme disease,

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00:16:18,478 --> 00:16:20,439
are being treated
with antibiotic therapy,

262
00:16:20,480 --> 00:16:24,568
and are not responding,
the most common reason

263
00:16:24,610 --> 00:16:26,612
is that they actually have
another illness.

264
00:16:26,653 --> 00:16:29,489
[soft dramatic music]

265
00:16:29,531 --> 00:16:31,950
- As Lyme disease evolved,

266
00:16:31,992 --> 00:16:34,328
doctors needed guidance.

267
00:16:34,369 --> 00:16:36,580
So a group got together,

268
00:16:36,622 --> 00:16:40,209
called the Infectious Diseases
Society of America,

269
00:16:40,250 --> 00:16:43,962
and wrote the first guidelines
to treat Lyme disease,

270
00:16:44,004 --> 00:16:46,340
where they staked their claim

271
00:16:46,381 --> 00:16:49,301
that this disease
was not chronic.

272
00:16:49,343 --> 00:16:52,095
♪ ♪

273
00:16:52,137 --> 00:16:55,098
- This is a fairly benign
disease if treated early.

274
00:16:55,140 --> 00:16:57,851
- It has, on occasion,
been life-disruptive,

275
00:16:57,893 --> 00:17:00,479
but I don't want
to overemphasize that fact.

276
00:17:01,980 --> 00:17:05,150
- As hard as the IDSA tried

277
00:17:05,192 --> 00:17:08,904
to solidify treatment
of Lyme disease

278
00:17:08,945 --> 00:17:11,198
in one way only,

279
00:17:11,240 --> 00:17:14,660
there were cracks
that emerged over time.

280
00:17:14,701 --> 00:17:17,162
And these cracks, if you will,

281
00:17:17,204 --> 00:17:20,999
were, you know, a doctor here,
a doctor there,

282
00:17:21,040 --> 00:17:22,166
who discovered

283
00:17:22,209 --> 00:17:25,212
following the guidelines
didn't always work.

284
00:17:25,253 --> 00:17:27,756
[tense music]

285
00:17:27,798 --> 00:17:31,009
- I decided to return
to Westchester County

286
00:17:31,051 --> 00:17:33,846
around 1985.

287
00:17:33,887 --> 00:17:36,598
Unbeknownst to me,
Westchester at that time

288
00:17:36,640 --> 00:17:40,477
was beginning
to be a burgeoning epidemic.

289
00:17:40,519 --> 00:17:41,770
I knew virtually nothing

290
00:17:41,812 --> 00:17:42,938
about Lyme disease

291
00:17:42,980 --> 00:17:44,273
when I went into practice.

292
00:17:44,314 --> 00:17:46,733
I knew the name. That's about it.

293
00:17:46,775 --> 00:17:50,153
What I was observing was,
like, incredible.

294
00:17:50,195 --> 00:17:52,030
People get sick.
You treat them.

295
00:17:52,072 --> 00:17:53,448
They get better.

296
00:17:53,490 --> 00:17:56,743
And then the same symptoms
would start creeping back.

297
00:17:56,785 --> 00:18:00,289
How can a organism survive
these antibiotics?

298
00:18:00,330 --> 00:18:02,165
[phone ringing]

299
00:18:02,207 --> 00:18:03,876
- These were really
in the early days,

300
00:18:03,917 --> 00:18:06,253
when we were all looking
for answers.

301
00:18:06,295 --> 00:18:07,546
I was having a lot of patients

302
00:18:07,588 --> 00:18:08,881
coming into my office

303
00:18:08,922 --> 00:18:10,257
with bull's-eye rashes,

304
00:18:10,299 --> 00:18:13,343
and about 80% would get better
with standard antibiotics,

305
00:18:13,385 --> 00:18:15,804
but 20% would not.

306
00:18:15,846 --> 00:18:17,264
So I would look
at the guidelines,

307
00:18:17,306 --> 00:18:19,516
but unfortunately,
those guidelines were not

308
00:18:19,558 --> 00:18:21,560
specific enough
to deal with the complexity

309
00:18:21,602 --> 00:18:22,603
of what I was seeing.

310
00:18:24,438 --> 00:18:26,648
- So when I first was learning
about Lyme disease,

311
00:18:26,690 --> 00:18:28,734
I was really interested
in an article

312
00:18:28,775 --> 00:18:30,152
that came out in 1989

313
00:18:30,194 --> 00:18:32,321
written by a neurologist,
Andrew Pachner.

314
00:18:32,362 --> 00:18:35,324
His article was called
"Lyme disease, the New 'Great Imitator.'"

315
00:18:35,365 --> 00:18:37,951
And in that article,
he presented six cases

316
00:18:37,993 --> 00:18:39,369
that were fascinating.

317
00:18:39,411 --> 00:18:41,038
There was one case
of an individual

318
00:18:41,079 --> 00:18:42,497
who had aggression outbursts.

319
00:18:42,539 --> 00:18:45,083
A young child, and when he was
treated, the OCD went away.

320
00:18:45,125 --> 00:18:47,211
Here we have
an infectious illness

321
00:18:47,252 --> 00:18:49,046
that's causing
psychiatric problems.

322
00:18:49,087 --> 00:18:51,006
So why was Lyme disease

323
00:18:51,048 --> 00:18:52,424
called
"the new great imitator?"

324
00:18:52,466 --> 00:18:55,135
Because the first
great imitator was syphilis.

325
00:18:55,177 --> 00:18:57,804
Syphilis was caused
by a spiral-shaped organism

326
00:18:57,846 --> 00:18:59,223
called a treponeme,

327
00:18:59,264 --> 00:19:02,935
and Lyme disease is caused
by a spiral-shaped organism.

328
00:19:02,976 --> 00:19:06,438
Syphilis caused a huge variety
of manifestations.

329
00:19:06,480 --> 00:19:09,024
So it mimicked other diseases.

330
00:19:09,066 --> 00:19:11,151
- Lyme disease may
be the great masquerader

331
00:19:11,193 --> 00:19:12,986
of the 1980s and '90s

332
00:19:13,028 --> 00:19:14,696
in that it can do
almost anything.

333
00:19:17,157 --> 00:19:20,118
- The Lyme disease spirochete
is shaped like a corkscrew,

334
00:19:20,160 --> 00:19:23,830
so it drills
through your joint cartilage.

335
00:19:24,957 --> 00:19:27,459
It quickly leaves
the bloodstream.

336
00:19:27,501 --> 00:19:29,378
It goes to organs.

337
00:19:29,419 --> 00:19:32,047
It goes to the heart
and the brain.

338
00:19:33,715 --> 00:19:36,051
- The Lyme disease bacteria,
Borrelia burgdorferi,

339
00:19:36,093 --> 00:19:37,803
is definitely one
of the smartest bacteria

340
00:19:37,845 --> 00:19:39,847
on the planet.

341
00:19:39,888 --> 00:19:42,182
This organism knows
how to change forms.

342
00:19:43,642 --> 00:19:46,186
It knows how to hide.

343
00:19:46,228 --> 00:19:48,313
And the way it evades
the immune system--

344
00:19:48,355 --> 00:19:51,817
Lyme is more difficult
to find on the blood tests.

345
00:19:51,859 --> 00:19:54,736
- And many of us clinicians
were observing that.

346
00:19:54,778 --> 00:19:58,073
Patients that we strongly
believed had Lyme disease,

347
00:19:58,115 --> 00:20:01,076
their standard tests
for Lyme disease were negative.

348
00:20:01,118 --> 00:20:04,246
And as a result, it is easy
for people to honestly,

349
00:20:04,288 --> 00:20:07,165
you know, confuse Lyme
for other conditions.

350
00:20:07,207 --> 00:20:09,793
- The most common misdiagnoses
that I see in my practice

351
00:20:09,835 --> 00:20:12,754
are people who've been diagnosed
with chronic fatigue syndrome,

352
00:20:12,796 --> 00:20:16,049
fibromyalgia,
rheumatoid arthritis, lupus,

353
00:20:16,091 --> 00:20:17,885
multiple sclerosis
is a big one,

354
00:20:17,926 --> 00:20:20,220
patients who have dementia,
Alzheimer's.

355
00:20:20,262 --> 00:20:22,973
Lyme can imitate
all of these different diseases.

356
00:20:23,015 --> 00:20:26,268
So it's a very,
very complex organism,

357
00:20:26,310 --> 00:20:28,478
and you really have
to understand the biology

358
00:20:28,520 --> 00:20:30,939
to understand how to treat
these patients effectively.

359
00:20:32,858 --> 00:20:35,986
- We're now up
to almost 500,000 cases

360
00:20:36,028 --> 00:20:38,739
of Lyme disease
in America every year.

361
00:20:39,823 --> 00:20:41,950
There are more cases
of Lyme disease

362
00:20:41,992 --> 00:20:44,953
than HIV
and breast cancer combined.

363
00:20:46,121 --> 00:20:48,624
Of those 500,000,

364
00:20:48,665 --> 00:20:52,711
about 10% to 20% will stay sick

365
00:20:52,753 --> 00:20:55,214
for some period of time.

366
00:20:55,255 --> 00:20:57,508
We now believe
that something on the order

367
00:20:57,549 --> 00:20:59,134
of 2 million people

368
00:20:59,176 --> 00:21:02,471
suffer the aftereffects
of Lyme disease

369
00:21:02,513 --> 00:21:03,764
in the United States.

370
00:21:05,224 --> 00:21:08,685
So 50 years later,
here we are,

371
00:21:08,727 --> 00:21:11,396
and we still haven't
answered many

372
00:21:11,438 --> 00:21:14,858
of the most urgent
and basic questions.

373
00:21:15,901 --> 00:21:19,571
"Chronic Lyme disease"
is a rejected term

374
00:21:19,613 --> 00:21:22,199
in American medicine.

375
00:21:22,241 --> 00:21:25,452
The question is, why?

376
00:21:25,494 --> 00:21:28,497
[ambient nature sounds]

377
00:21:34,586 --> 00:21:38,131
- Home, sweet home
away from home.

378
00:21:38,173 --> 00:21:42,511
And it is...

379
00:21:42,553 --> 00:21:46,348
time to do the ritual ironing.

380
00:21:59,820 --> 00:22:02,739
I feel a little guilty
staying in this place.

381
00:22:02,781 --> 00:22:05,701
Usually, like,
an Embassy Suites person.

382
00:22:08,745 --> 00:22:11,498
I literally just came
from Carlisle, Pennsylvania,

383
00:22:11,540 --> 00:22:14,960
which is, like,
an incredibly endemic area.

384
00:22:15,002 --> 00:22:18,463
And just
to hear the stories there,

385
00:22:18,505 --> 00:22:21,383
with whole towns
and neighborhoods being infected.

386
00:22:22,843 --> 00:22:27,556
The mere fact
that I validate their disease,

387
00:22:27,598 --> 00:22:30,058
you know, and recognize
it's not all in their head,

388
00:22:30,100 --> 00:22:31,643
that they're not just
fabricating everything--

389
00:22:31,685 --> 00:22:34,146
I think that's so important
for people

390
00:22:34,188 --> 00:22:36,398
to have maybe
somebody like me,

391
00:22:36,440 --> 00:22:39,818
who's in the medical
profession, saying,

392
00:22:39,860 --> 00:22:42,237
"I hear you."
You know, "I get it."

393
00:22:43,488 --> 00:22:46,617
- It is my honor to introduce
tonight's keynote speaker,

394
00:22:46,658 --> 00:22:48,535
Dr. Neil Spector.

395
00:22:48,577 --> 00:22:50,037
Dr. Spector is one of the top

396
00:22:50,078 --> 00:22:52,623
breast cancer scientists
in the country.

397
00:22:52,664 --> 00:22:55,375
The Lyme community
is so incredibly fortunate

398
00:22:55,417 --> 00:22:57,794
to have one of the smartest
minds in research,

399
00:22:57,836 --> 00:22:59,421
who is working
towards better treatment

400
00:22:59,463 --> 00:23:02,007
and a cure
for tick-borne illnesses.

401
00:23:05,511 --> 00:23:07,971
- Okay. Lyme disease.

402
00:23:08,013 --> 00:23:09,348
It's everywhere, right?

403
00:23:09,389 --> 00:23:11,308
This isn't just a problem
in Connecticut,

404
00:23:11,350 --> 00:23:12,935
New York, New Jersey.

405
00:23:12,976 --> 00:23:14,728
It's all over the place.

406
00:23:14,770 --> 00:23:16,522
And it's only getting worse.

407
00:23:17,856 --> 00:23:20,108
We've got people
at the prime of their lives

408
00:23:20,150 --> 00:23:22,402
who are taken out of society,

409
00:23:22,444 --> 00:23:26,865
and yet we have no clue
what's going on with them.

410
00:23:28,242 --> 00:23:32,162
I'm coming up on ten years
of a heart transplant recipient.

411
00:23:32,204 --> 00:23:35,749
That was an evening that I'll
never forget, Friday evening.

412
00:23:35,791 --> 00:23:39,044
Surgeon walked into my room,
and he said to me,

413
00:23:39,086 --> 00:23:41,672
"You'll be dead by Monday
without a heart transplant."

414
00:23:41,713 --> 00:23:44,633
[hopeful music]

415
00:23:44,675 --> 00:23:47,094
You can do all
the right things in the world

416
00:23:47,135 --> 00:23:49,012
and get bit by a tick,

417
00:23:49,054 --> 00:23:51,640
and it'll change
your world forever.

418
00:23:52,891 --> 00:23:55,894
[birds singing]

419
00:23:59,565 --> 00:24:01,775
I'd just moved here
to North Carolina.

420
00:24:01,817 --> 00:24:04,570
It was 1998.

421
00:24:04,611 --> 00:24:06,154
Just started a new job.

422
00:24:06,196 --> 00:24:08,490
Our daughter
was a few weeks old.

423
00:24:10,951 --> 00:24:13,203
I had always been
unbelievably healthy.

424
00:24:13,245 --> 00:24:14,705
I mean, I had ran marathons.

425
00:24:14,746 --> 00:24:18,208
I used to run ten miles a day,
six days a week.

426
00:24:18,250 --> 00:24:20,961
So it was a very foreign
experience for me

427
00:24:21,003 --> 00:24:24,047
to go from taking care
of cancer patients

428
00:24:24,089 --> 00:24:27,759
to barely being able
to walk ten yards

429
00:24:27,801 --> 00:24:29,553
without having to stop.

430
00:24:30,846 --> 00:24:33,599
We went through
autoimmune diseases, lupus.

431
00:24:33,640 --> 00:24:35,184
All the tests were negative.

432
00:24:35,225 --> 00:24:37,019
I completely fell
through the cracks

433
00:24:37,060 --> 00:24:39,229
of the medical system.

434
00:24:39,271 --> 00:24:41,690
And it wasn't until four years
into my illness

435
00:24:41,732 --> 00:24:43,901
that I developed arthritis.

436
00:24:43,942 --> 00:24:46,069
And so I started
piecing it together and said,

437
00:24:46,111 --> 00:24:48,697
you know, "I'm convinced
I have Lyme disease."

438
00:24:51,450 --> 00:24:53,869
I got a call in my office,

439
00:24:53,911 --> 00:24:56,788
and the cardiologist said
to me,

440
00:24:56,830 --> 00:24:58,790
"Is there a chair nearby?"

441
00:25:00,751 --> 00:25:03,253
You know, "You've got
a severely damaged heart.

442
00:25:03,295 --> 00:25:05,923
You need to be evaluated
for a heart transplant."

443
00:25:07,382 --> 00:25:09,468
I'm not sure
how I drove home.

444
00:25:09,510 --> 00:25:12,471
Just completely in tears,

445
00:25:12,513 --> 00:25:14,306
thinking, "This is it."

446
00:25:14,348 --> 00:25:17,809
Not gonna live
beyond a certain age.

447
00:25:17,851 --> 00:25:19,937
Never gonna see
my daughter grow older.

448
00:25:19,978 --> 00:25:22,689
I'm not gonna see
any of the milestones.

449
00:25:24,316 --> 00:25:27,194
And then I just realized,
you know,

450
00:25:27,236 --> 00:25:30,572
not gonna just roll over
and let that be the answer.

451
00:25:31,740 --> 00:25:33,659
I'm gonna do
whatever it takes.

452
00:25:35,786 --> 00:25:37,746
"Few minutes after
telephone call

453
00:25:37,788 --> 00:25:40,958
that 'your new heart
has been found.'"

454
00:25:42,793 --> 00:25:45,671
Yep.
Giving the old V sign.

455
00:25:45,712 --> 00:25:47,965
- Moment of victory.

456
00:25:48,006 --> 00:25:50,217
[tense music]

457
00:25:50,259 --> 00:25:51,301
♪ ♪

458
00:25:51,343 --> 00:25:53,428
But then you sit
with all those other feelings

459
00:25:53,470 --> 00:25:56,974
of the person
who lost their life.

460
00:25:57,015 --> 00:25:59,226
That's a whole other side
of things too,

461
00:25:59,268 --> 00:26:04,731
the sitting with "What is
their family going through?"

462
00:26:04,773 --> 00:26:07,943
Those were hard emotions
to sort out.

463
00:26:07,985 --> 00:26:10,487
- They were, yeah.
They're still difficult.

464
00:26:10,529 --> 00:26:12,573
- They are still difficult.

465
00:26:15,826 --> 00:26:18,161
- I think about that a lot.

466
00:26:18,203 --> 00:26:20,789
You know, why me?

467
00:26:20,831 --> 00:26:22,541
Sometimes you feel
the pressure

468
00:26:22,583 --> 00:26:23,917
of having to live your life

469
00:26:23,959 --> 00:26:26,211
in an extraordinary way
for those people

470
00:26:26,253 --> 00:26:29,464
who unfortunately
didn't have the opportunity.

471
00:26:31,091 --> 00:26:33,927
You know, with all these unknowns,
there is one known,

472
00:26:33,969 --> 00:26:36,096
and that's that people
are falling through the cracks

473
00:26:36,138 --> 00:26:37,556
of the medical system.

474
00:26:37,598 --> 00:26:39,892
The burden should not be
on people who are sick

475
00:26:39,933 --> 00:26:41,935
to prove that they're sick.

476
00:26:41,977 --> 00:26:46,356
It should be on us,
as medical professionals,

477
00:26:46,398 --> 00:26:50,235
to better understand what's
going on and to help them.

478
00:26:55,824 --> 00:26:58,827
[TV drones in background]

479
00:27:11,215 --> 00:27:14,343
- It was a very hard time
for all of us.

480
00:27:14,384 --> 00:27:17,012
We felt we were losing Julia.

481
00:27:18,263 --> 00:27:21,517
I had nobody
to take care of Julia.

482
00:27:21,558 --> 00:27:24,478
[soft dramatic music]

483
00:27:24,520 --> 00:27:27,731
So me and my wife
had to make a decision.

484
00:27:27,773 --> 00:27:30,192
One of us had to stay home.

485
00:27:31,151 --> 00:27:34,613
- My dad decided that he
wasn't gonna go back to work.

486
00:27:34,655 --> 00:27:36,990
And I remember it
breaking my heart,

487
00:27:37,032 --> 00:27:39,326
because I was
ruining everybody's life,

488
00:27:39,368 --> 00:27:43,497
and I couldn't control it,
couldn't do anything about it.

489
00:27:43,539 --> 00:27:47,543
- We were struggling.
I was without salary.

490
00:27:47,584 --> 00:27:51,046
It felt like
an unwinnable battle.

491
00:27:51,088 --> 00:27:55,175
And then something
really extraordinary happened.

492
00:27:55,217 --> 00:27:57,886
♪ ♪

493
00:27:57,928 --> 00:28:00,889
- This is the plane
that is bringing Pope Francis

494
00:28:00,931 --> 00:28:03,976
here to New York City
for the very first time.

495
00:28:04,017 --> 00:28:05,894
Tremendous sense
of excitement.

496
00:28:05,936 --> 00:28:07,604
And here he is.

497
00:28:07,646 --> 00:28:09,481
- Holy Father!

498
00:28:09,523 --> 00:28:13,151
- He steps out of the plane,
and it's almost like he makes,

499
00:28:13,193 --> 00:28:15,487
like,
a beeline straight to me.

500
00:28:15,529 --> 00:28:17,698
- Holy Father.

501
00:28:17,739 --> 00:28:19,491
- And, Julia, how come
you're in the wheelchair?

502
00:28:19,533 --> 00:28:21,910
I understand you're fighting
a tough fight, right?

503
00:28:21,952 --> 00:28:24,872
- Well, I've been undiagnosed
for four months,

504
00:28:24,913 --> 00:28:28,000
and I have a clinical diagnosis
of Lyme disease.

505
00:28:28,041 --> 00:28:29,710
- And why did you
come here today?

506
00:28:29,751 --> 00:28:32,212
- I came here 'cause I wanted
to meet the pope,

507
00:28:32,254 --> 00:28:34,548
'cause I believe in a miracle.

508
00:28:34,590 --> 00:28:37,342
- You believe in a miracle.

509
00:28:37,384 --> 00:28:39,845
- She just garnered
a lot of media attention.

510
00:28:39,887 --> 00:28:42,347
We started getting phone calls
from every network.

511
00:28:42,389 --> 00:28:43,765
- This was
the strangest story.

512
00:28:43,807 --> 00:28:46,101
A vibrant,
healthy 12-year-old girl.

513
00:28:46,143 --> 00:28:47,895
- You know, suddenly,
in, like, a second,

514
00:28:47,936 --> 00:28:49,188
my life just changed.

515
00:28:49,229 --> 00:28:50,856
- The mothers at Julia's school,

516
00:28:50,898 --> 00:28:52,608
they started
this GoFundMe page

517
00:28:52,649 --> 00:28:54,568
that was very successful.

518
00:28:54,610 --> 00:28:56,612
- We started getting bombarded
with letters

519
00:28:56,653 --> 00:28:58,614
from all different people
who had Lyme disease

520
00:28:58,655 --> 00:29:00,407
around the world.

521
00:29:00,449 --> 00:29:02,576
- We went from being alone

522
00:29:02,618 --> 00:29:04,995
to being, like, exposed.

523
00:29:05,037 --> 00:29:07,122
And, you know,
we didn't realize it then,

524
00:29:07,164 --> 00:29:10,542
but we were in the middle
of a tremendous controversy.

525
00:29:10,584 --> 00:29:12,669
- Convinced
that Julia had chronic Lyme,

526
00:29:12,711 --> 00:29:14,838
her father decided
to fight back,

527
00:29:14,880 --> 00:29:16,673
only to find himself
right in the middle

528
00:29:16,715 --> 00:29:18,926
of a mind-boggling medical war.

529
00:29:18,967 --> 00:29:20,802
- There's a lot
of misinformation out there

530
00:29:20,844 --> 00:29:22,095
about Lyme disease.

531
00:29:22,137 --> 00:29:23,805
- Wormser was a lead author

532
00:29:23,847 --> 00:29:27,100
of Lyme treatment guidelines
followed by the CDC.

533
00:29:27,142 --> 00:29:28,852
Recently, he equated some

534
00:29:28,894 --> 00:29:31,688
of the chronic Lyme conversation
to fake news.

535
00:29:31,730 --> 00:29:33,273
He never treated Julia,

536
00:29:33,315 --> 00:29:36,235
but he influenced many
who did.

537
00:29:36,276 --> 00:29:39,029
- I'll never forget the day
we got the phone call.

538
00:29:39,071 --> 00:29:42,074
I went outside
to have a cigarette,

539
00:29:42,115 --> 00:29:44,117
and my phone rang.

540
00:29:44,159 --> 00:29:47,371
And I pick up the phone,
and it's somebody from the CDC.

541
00:31:08,994 --> 00:31:10,871
Not too long after that,

542
00:31:10,913 --> 00:31:13,790
Julia was interviewed
by Fox 5,

543
00:31:13,832 --> 00:31:16,585
and I excitedly shared
this information

544
00:31:16,627 --> 00:31:18,504
with a list of my contacts.

545
00:31:18,545 --> 00:31:23,425
Somehow, my email was sent
to Dr. Phillip Baker.

546
00:31:23,467 --> 00:31:26,261
Here's another man
who has never met us.

547
00:31:26,303 --> 00:31:27,930
He has never had
the opportunity

548
00:31:27,971 --> 00:31:30,307
to look
at Julia's medical records.

549
00:31:30,349 --> 00:31:34,102
And he writes, "Since the results
of laboratory tests

550
00:31:34,144 --> 00:31:36,772
"for the diagnosis
of Lyme disease were negative,

551
00:31:36,813 --> 00:31:41,026
"were other possibilities considered
to explain such symptoms?

552
00:31:41,068 --> 00:31:44,112
"If not, wasn't this child
denied the opportunity

553
00:31:44,154 --> 00:31:46,406
"to get the medical treatment
she deserved

554
00:31:46,448 --> 00:31:50,118
"by obsessively focusing
on Lyme disease?

555
00:31:50,160 --> 00:31:52,371
"Perhaps this is
the most tragic outcome

556
00:31:52,412 --> 00:31:54,414
of this sad story."

557
00:31:54,456 --> 00:31:58,627
Julia has been tested
for everything under the Sun,

558
00:31:58,669 --> 00:32:00,921
several times.

559
00:32:00,963 --> 00:32:03,340
I guess they have
their own motives

560
00:32:03,382 --> 00:32:05,843
for being interested
in Julia's story.

561
00:32:05,884 --> 00:32:09,471
But I can't imagine
any medical professional

562
00:32:09,513 --> 00:32:13,350
who holds a high position
in the CDC calling a patient

563
00:32:13,392 --> 00:32:17,187
to deter them from treatment
of any disease.

564
00:32:17,229 --> 00:32:19,523
How does that make sense?

565
00:32:19,565 --> 00:32:22,568
[ambient nature sounds]

566
00:32:25,320 --> 00:32:29,741
- Investigate the CDC!
Investigate Lyme disease!

567
00:32:29,783 --> 00:32:35,539
Investigate the CDC!
Investigate Lyme disease!

568
00:32:37,040 --> 00:32:40,961
- Doctors need
to realize it's everywhere.

569
00:32:41,003 --> 00:32:43,881
I mean,
birds fly, animals roam,

570
00:32:43,922 --> 00:32:46,425
people travel
and pack their bags

571
00:32:46,466 --> 00:32:49,428
with clothing that they've
been out in the woods with.

572
00:32:49,469 --> 00:32:50,804
- Every doctor I've been to

573
00:32:50,846 --> 00:32:53,390
is saying, like,
"We don't treat Lyme," or...

574
00:32:53,432 --> 00:32:54,892
- Yeah.
- "It's all in your head…"

575
00:32:54,933 --> 00:32:56,310
- Yeah.
- Or they'll see the strands.

576
00:32:56,351 --> 00:32:58,437
"Oh, is not--
is not the CDC positive?"

577
00:32:58,478 --> 00:33:00,939
- You see, that's--that's--
- "So you're fine."

578
00:33:00,981 --> 00:33:04,735
- Investigate the CDC!
Investigate Lyme disease!

579
00:33:06,612 --> 00:33:10,073
- We understand that patients
who don't feel well

580
00:33:10,115 --> 00:33:12,326
are desperate
and seeking answers.

581
00:33:12,367 --> 00:33:15,287
But we're concerned
that some of them

582
00:33:15,329 --> 00:33:18,040
fall into a trap
of being treated for things

583
00:33:18,081 --> 00:33:21,168
that ultimately
are not helping them.

584
00:33:21,210 --> 00:33:23,837
[tense music]

585
00:33:23,879 --> 00:33:26,423
- There are very powerful
forces standing in the way

586
00:33:26,465 --> 00:33:29,635
of progressive attitudes
towards Lyme,

587
00:33:29,676 --> 00:33:33,597
most notably
Centers for Disease Control

588
00:33:33,639 --> 00:33:37,976
because they are the leader
not just for this country

589
00:33:38,018 --> 00:33:40,479
but for all of the countries
in the world.

590
00:33:40,521 --> 00:33:44,525
And their intransigence
has created just--

591
00:33:44,566 --> 00:33:46,485
just a world of problems.

592
00:33:46,527 --> 00:33:48,028
[music building]

593
00:33:48,070 --> 00:33:49,279
In the early '90s,

594
00:33:49,321 --> 00:33:53,200
I was actually invited out
to CDC Fort Collins.

595
00:33:53,242 --> 00:33:55,160
You know, I gave a talk there.

596
00:33:55,202 --> 00:33:57,913
And afterwards,
we all went out to ski.

597
00:33:59,081 --> 00:34:01,166
I've had very good relations
with many of the folks

598
00:34:01,208 --> 00:34:03,210
at CDC over many years.

599
00:34:03,252 --> 00:34:04,878
It's not the people.

600
00:34:04,920 --> 00:34:06,797
It's the policies.

601
00:34:06,839 --> 00:34:11,134
And the question is,
who sets CDC policies, and why?

602
00:34:11,176 --> 00:34:17,266
♪ ♪

603
00:34:19,518 --> 00:34:23,438
- One of my major stories
for the "Poughkeepsie Journal"

604
00:34:23,480 --> 00:34:27,650
was when I obtained
a sheaf of emails,

605
00:34:27,693 --> 00:34:30,737
2,500 pages, actually.

606
00:34:32,072 --> 00:34:36,827
These emails were between
the major players in Lyme disease

607
00:34:36,869 --> 00:34:41,956
as well as officials
in the CDC and NIH.

608
00:34:41,998 --> 00:34:48,045
The emails belied a sort of
"us against them" mentality.

609
00:34:48,088 --> 00:34:50,841
In one email,
this researcher from Yale

610
00:34:50,882 --> 00:34:53,677
by the name of Durland Fish
was commenting

611
00:34:53,719 --> 00:34:56,263
how Lyme disease groups
were organizing.

612
00:34:56,304 --> 00:34:58,932
They were holding protests.

613
00:34:58,974 --> 00:35:02,561
What he said was,
"This battle cannot be won

614
00:35:02,603 --> 00:35:04,354
"on a scientific front.

615
00:35:04,396 --> 00:35:08,108
"We need to mount
a sociopolitical offensive.

616
00:35:08,150 --> 00:35:10,736
"But we are outnumbered
and outgunned.

617
00:35:10,777 --> 00:35:14,323
We need reinforcements
from outside our field."

618
00:35:18,076 --> 00:35:21,413
There was another
very telling email.

619
00:35:21,455 --> 00:35:25,542
In 2007, Phil Baker was leaving

620
00:35:25,584 --> 00:35:28,212
the National Institutes of Health.

621
00:35:28,253 --> 00:35:32,341
He was the person
who decided on grants

622
00:35:32,382 --> 00:35:34,927
for Lyme disease research.

623
00:35:34,968 --> 00:35:38,180
And what he said was,
"I'll certainly miss

624
00:35:38,222 --> 00:35:40,974
"all of you people--
the scientists--

625
00:35:41,016 --> 00:35:44,311
but not the Lyme loonies."

626
00:35:47,189 --> 00:35:49,816
When I asked him
for a comment,

627
00:35:49,858 --> 00:35:54,488
he said, "That might be
too kind a description."

628
00:35:56,240 --> 00:36:00,953
And one more, from an official
at the National Institutes of Health:

629
00:36:00,994 --> 00:36:03,997
"What we have here is a war,

630
00:36:04,039 --> 00:36:08,627
"an insurgency against
evidence-based medicine.

631
00:36:08,669 --> 00:36:11,296
It's time to start
shooting back."

632
00:36:14,883 --> 00:36:17,886
[birds singing]

633
00:36:27,437 --> 00:36:29,356
- It's such a bad article,
the computer doesn't even

634
00:36:29,398 --> 00:36:31,108
want to open it up.

635
00:36:32,734 --> 00:36:34,111
[laughs]

636
00:36:34,152 --> 00:36:35,779
That happens sometimes.

637
00:36:37,614 --> 00:36:40,784
"Antiscience."
Huh.

638
00:36:41,785 --> 00:36:44,538
Who, like,
publishes this stuff?

639
00:36:44,580 --> 00:36:47,541
[inquisitive music]

640
00:36:47,583 --> 00:36:54,590
♪ ♪

641
00:36:57,426 --> 00:37:01,597
So one of the problems
with these antiscience articles--

642
00:37:01,638 --> 00:37:04,141
they sort of make
these broad claims.

643
00:37:04,183 --> 00:37:06,435
And then they make it,
like, people like me,

644
00:37:06,476 --> 00:37:10,522
who would question
the testing, the treatment,

645
00:37:10,564 --> 00:37:14,359
and try to lump me into people
who believe, you know,

646
00:37:14,401 --> 00:37:17,487
that the Moon doesn't exist
and the world is flat.

647
00:37:17,529 --> 00:37:19,406
And they're deflecting
the real issues.

648
00:37:22,409 --> 00:37:25,829
What kind of a disease is it
that you're ostracized

649
00:37:25,871 --> 00:37:28,790
by the very community
that should be helping you?

650
00:37:28,832 --> 00:37:30,876
I don't think you have
to have an MD to think

651
00:37:30,918 --> 00:37:32,753
there's something wrong here.

652
00:37:32,794 --> 00:37:35,339
What is it that these people
have in common?

653
00:37:35,380 --> 00:37:36,715
And you could either say
they all have in common

654
00:37:36,757 --> 00:37:38,133
that they're crazy,

655
00:37:38,175 --> 00:37:40,385
or you could say there's,
like, something out there

656
00:37:40,427 --> 00:37:41,803
that's causing this.

657
00:37:41,845 --> 00:37:45,098
[bell tolling]

658
00:37:45,140 --> 00:37:47,309
This may be some
of the first Lyme science

659
00:37:47,351 --> 00:37:48,644
being done on this campus.

660
00:37:48,685 --> 00:37:50,604
And in fact,
some of these projects

661
00:37:50,646 --> 00:37:53,023
are really the first
to be done in this country.

662
00:37:54,191 --> 00:37:56,360
These are ideas
that I've been working on

663
00:37:56,401 --> 00:37:57,861
and my colleagues
have been working on

664
00:37:57,903 --> 00:38:00,656
in the cancer field
for, you know, 20-plus years,

665
00:38:00,697 --> 00:38:04,535
and now we're finally gonna be
applying this to Lyme disease.

666
00:38:14,795 --> 00:38:17,756
What if I told you
that we could image

667
00:38:17,798 --> 00:38:19,424
Lyme disease in your body?

668
00:38:19,466 --> 00:38:21,635
[machine whirring]

669
00:38:21,677 --> 00:38:24,638
[inquisitive music]

670
00:38:24,680 --> 00:38:27,140
♪ ♪

671
00:38:27,182 --> 00:38:29,351
Can you imagine going
to a doctor and say,

672
00:38:29,393 --> 00:38:31,395
"Wow, you've got pain
in your left knee.

673
00:38:31,436 --> 00:38:33,188
"That's kind of interesting,
because this scan

674
00:38:33,230 --> 00:38:36,191
is lighting up for Borrelia
in your left knee."

675
00:38:37,651 --> 00:38:42,072
So we could actually show,
on a noninvasive scan,

676
00:38:42,114 --> 00:38:44,533
that you've got the bugs
in your body,

677
00:38:44,575 --> 00:38:47,202
and you've got 'em
where your symptoms are.

678
00:38:48,328 --> 00:38:50,539
We don't have
anything like this.

679
00:38:50,581 --> 00:38:52,332
It's all guesswork.

680
00:38:52,374 --> 00:38:54,168
I mean,
just like it is for cancer,

681
00:38:54,209 --> 00:38:57,087
this would be revolutionary

682
00:38:57,129 --> 00:38:59,590
in the way we diagnose

683
00:38:59,631 --> 00:39:01,717
and then the way we treat.

684
00:39:03,760 --> 00:39:07,514
Since my transplant,
I realized that this field

685
00:39:07,556 --> 00:39:10,517
is sorely lacking,
bad diagnostics.

686
00:39:10,559 --> 00:39:13,145
We need better therapies.
All of you know that.

687
00:39:13,187 --> 00:39:17,024
What I'm saying is that we can
and we will do better.

688
00:39:17,065 --> 00:39:18,817
I'm gonna make you
that promise right here.

689
00:39:22,070 --> 00:39:26,116
The timeline that I promised
to deliver is three years.

690
00:39:26,158 --> 00:39:27,618
I mean, that's,
like, unheard of.

691
00:39:27,659 --> 00:39:29,203
But that's the pressure
I'm putting

692
00:39:29,244 --> 00:39:31,496
on myself and everyone else.

693
00:39:31,538 --> 00:39:33,624
That's, like, a heavy burden,
when I know, like,

694
00:39:33,665 --> 00:39:36,376
what the desperation is,
when people are like,

695
00:39:36,418 --> 00:39:39,671
"Well, Neil, you're it.
You got to deliver for us."

696
00:39:39,713 --> 00:39:42,716
So, um,

697
00:39:42,758 --> 00:39:45,135
I'm gonna deliver for people.

698
00:39:56,813 --> 00:40:01,235
- After the pope, Julia was
taking a turn for the worse.

699
00:40:02,694 --> 00:40:04,404
I knew that I had
to find somebody

700
00:40:04,446 --> 00:40:07,324
that was willing to treat Julia
for Lyme disease.

701
00:40:08,909 --> 00:40:10,911
And I started to realize
that there's such a thing

702
00:40:10,953 --> 00:40:12,871
called Lyme-literate doctors.

703
00:40:15,207 --> 00:40:17,334
Everyone I would call
would have a waiting list

704
00:40:17,376 --> 00:40:19,211
of six to eight months.

705
00:40:20,671 --> 00:40:22,548
You know, all these doctors
are not covered

706
00:40:22,589 --> 00:40:24,132
by insurance companies.

707
00:40:26,885 --> 00:40:29,221
It all seemed
a little sketchy.

708
00:40:36,061 --> 00:40:37,354
- Over here.

709
00:40:39,398 --> 00:40:41,191
Take a nice, deep breath.

710
00:40:41,233 --> 00:40:42,985
Good.

711
00:40:43,026 --> 00:40:44,403
Let me see with your reflexes.

712
00:40:47,739 --> 00:40:49,867
Yeah, they're cold.

713
00:40:49,908 --> 00:40:51,785
Now, if you start
to feel really, really dizzy

714
00:40:51,827 --> 00:40:53,203
with this,
I will sit you down.

715
00:40:53,245 --> 00:40:56,248
I just want to see how fast
your heart rate starts to go up.

716
00:40:56,290 --> 00:40:57,583
- Okay, go ahead.
- All right.

717
00:40:59,042 --> 00:41:00,335
Okay.

718
00:41:00,377 --> 00:41:03,255
I'll try and do this for at least,
if you can, just for one minute,

719
00:41:03,297 --> 00:41:05,382
so I can get a sense
what the pulse rate's running.

720
00:41:05,424 --> 00:41:07,384
- [inaudible]
- Is it already difficult?

721
00:41:07,426 --> 00:41:08,594
- Yeah, yeah.
Down, down, down, down.

722
00:41:08,635 --> 00:41:10,345
- If you have to sit down,
it's okay.

723
00:41:10,387 --> 00:41:11,805
- [inaudible]
- Dad, Dad, Dad.

724
00:41:11,847 --> 00:41:13,182
Just down.
- [inaudible]

725
00:41:13,223 --> 00:41:14,224
- Okay, go ahead. Go ahead.
- Down. Down.

726
00:41:14,266 --> 00:41:15,684
- Go down.

727
00:41:18,353 --> 00:41:19,521
- Let me just
check the pulse now.

728
00:41:20,898 --> 00:41:22,524
[tense music]

729
00:41:22,566 --> 00:41:25,068
I've never seen anyone
have a heart rate of 250.

730
00:41:25,110 --> 00:41:27,779
- Mm-hmm.
- That's--that's off the wall.

731
00:41:29,239 --> 00:41:31,867
When I was looking for answers
for Lyme patients,

732
00:41:31,909 --> 00:41:33,785
I discovered
that there were multiple reasons

733
00:41:33,827 --> 00:41:35,037
why people stayed ill.

734
00:41:35,078 --> 00:41:36,914
It was like going
to a doctor's office

735
00:41:36,955 --> 00:41:40,000
with 16 nails in your foot,
saying you have foot pain.

736
00:41:40,042 --> 00:41:41,502
And the doctor
pulls out one nail

737
00:41:41,543 --> 00:41:42,920
and says,
"Come back in a month."

738
00:41:42,961 --> 00:41:44,630
You still have 15 nails
in your foot.

739
00:41:44,671 --> 00:41:45,881
You're gonna have pain.

740
00:41:45,923 --> 00:41:48,383
Some of it is that the Lyme
organism is persisting,

741
00:41:48,425 --> 00:41:50,761
but part of it
is also other infections.

742
00:41:50,802 --> 00:41:52,721
Right now, there are
at least 18 different

743
00:41:52,763 --> 00:41:54,848
tick-borne diseases
that can be transmitted

744
00:41:54,890 --> 00:41:56,642
by the bite of a tick.

745
00:42:00,521 --> 00:42:02,523
You know, the most common
coinfections that we see

746
00:42:02,564 --> 00:42:05,776
that make people ill is Lyme,
babesia, and bartonella. Right?

747
00:42:05,817 --> 00:42:07,528
And when you
put them all together,

748
00:42:07,569 --> 00:42:09,947
the people get
much, much sicker.

749
00:42:09,988 --> 00:42:12,157
- The first appointment
with Dr. Horowitz,

750
00:42:12,199 --> 00:42:14,952
when I realized that they
didn't accept insurance,

751
00:42:14,993 --> 00:42:16,286
you know, that was a red flag.

752
00:42:16,328 --> 00:42:20,040
I realize now
that it's not a red flag.

753
00:42:20,082 --> 00:42:22,417
That first visit,
I think it was anywhere

754
00:42:22,459 --> 00:42:24,628
between three and four hours.

755
00:42:24,670 --> 00:42:29,049
And so much was revealed to me
about Julia's situation.

756
00:42:30,759 --> 00:42:32,052
- I was in insurance companies.

757
00:42:32,094 --> 00:42:34,429
I accepted Medicare
for at least 25 years.

758
00:42:34,471 --> 00:42:35,889
There just got to be a point

759
00:42:35,931 --> 00:42:38,308
when the insurance companies
dropped me.

760
00:42:38,350 --> 00:42:40,018
There was just no way
to continue in that way,

761
00:42:40,060 --> 00:42:41,520
and I had to go
outside the system.

762
00:42:41,562 --> 00:42:44,064
[tense music]

763
00:42:44,106 --> 00:42:47,609
I lost about 2,000 patients
within a period of six months

764
00:42:47,651 --> 00:42:48,944
because I was
spending too much

765
00:42:48,986 --> 00:42:50,779
of the insurance
company's money

766
00:42:50,821 --> 00:42:53,323
for a disease
that didn't exist.

767
00:42:53,365 --> 00:42:56,118
It was like,
hear no evil, see no evil.

768
00:42:56,159 --> 00:42:58,579
They just didn't want
to know about it.

769
00:42:58,620 --> 00:43:05,586
♪ ♪

770
00:43:05,627 --> 00:43:10,174
- Lyme disease is the first
disease of epidemic proportion

771
00:43:10,215 --> 00:43:12,593
that came to light
hand in hand

772
00:43:12,634 --> 00:43:15,470
with the development
of managed care.

773
00:43:15,512 --> 00:43:18,223
- When HMO medicine
started taking effect

774
00:43:18,265 --> 00:43:20,350
in the 1980s and '90s,

775
00:43:20,392 --> 00:43:21,977
it was easy
to practice medicine

776
00:43:22,019 --> 00:43:24,062
for people
that had straight diseases

777
00:43:24,104 --> 00:43:26,481
like high blood pressure,
high cholesterol, diabetes.

778
00:43:26,523 --> 00:43:28,400
I could get them in and out
in 10 to 15 minutes.

779
00:43:28,442 --> 00:43:29,484
That was simple.

780
00:43:29,526 --> 00:43:32,821
The problem with Lyme disease is,
they have up to 38 different symptoms.

781
00:43:32,863 --> 00:43:36,325
You can't get that done
in 12 to 15 minutes.

782
00:43:36,366 --> 00:43:39,077
- So here's a disease that's
affecting a lot of people,

783
00:43:39,119 --> 00:43:42,789
can be costly, and there's
been a very active role

784
00:43:42,831 --> 00:43:47,753
of the insurers, their agents,
to define

785
00:43:47,794 --> 00:43:52,007
not Lyme disease away
but chronic Lyme disease away.

786
00:43:52,049 --> 00:43:54,676
[static buzzes]

787
00:43:54,718 --> 00:43:57,846
I want to introduce everybody.
This is Vicki Logan.

788
00:43:57,888 --> 00:44:01,517
And it is June 22, 2001.

789
00:44:01,558 --> 00:44:06,230
You are a former
pediatric ICU nurse, correct?

790
00:44:06,271 --> 00:44:08,565
So you were
a highly skilled professional.

791
00:44:10,025 --> 00:44:11,485
- And highly educated.

792
00:44:11,527 --> 00:44:13,695
[tense music]

793
00:44:13,737 --> 00:44:16,240
Vicki Logan was a fairly early
patient that I saw,

794
00:44:16,281 --> 00:44:18,534
around '88 or '89.

795
00:44:18,575 --> 00:44:22,412
She presented a mystery
that hadn't been solved.

796
00:44:22,454 --> 00:44:25,040
When she came to me, I studied her
very carefully for a year,

797
00:44:25,082 --> 00:44:26,625
did all kinds of testing,

798
00:44:26,667 --> 00:44:28,168
everything that I knew
how to do,

799
00:44:28,210 --> 00:44:29,461
not just for Lyme disease
but for other,

800
00:44:29,503 --> 00:44:32,297
you know, conditions.

801
00:44:32,339 --> 00:44:35,551
I knew that she had grown up
in Westchester County,

802
00:44:35,592 --> 00:44:38,178
and I knew that it was
a very tick-infested area.

803
00:44:38,220 --> 00:44:40,222
Realizing that she was sick
and getting worse,

804
00:44:40,264 --> 00:44:42,766
I felt that it was appropriate
to treat her

805
00:44:42,808 --> 00:44:44,893
for the possibility
that she might have Lyme.

806
00:44:44,935 --> 00:44:46,436
♪ ♪

807
00:44:46,478 --> 00:44:50,190
About a year later,
she begged me for a spinal tap.

808
00:44:50,232 --> 00:44:52,234
I put a couple
of ccs of spinal fluid

809
00:44:52,276 --> 00:44:56,280
in a special culture
and shipped it off to the CDC.

810
00:44:57,698 --> 00:45:00,492
Several weeks later, I got
an excited telephone call

811
00:45:00,534 --> 00:45:03,328
from David Dennis
from CDC Fort Collins

812
00:45:03,370 --> 00:45:05,706
to let me know that spirochetes

813
00:45:05,747 --> 00:45:07,916
were growing
out of her spinal fluid.

814
00:45:09,376 --> 00:45:11,128
He was quite excited about it

815
00:45:11,170 --> 00:45:13,380
and actually
rather incredulous,

816
00:45:13,422 --> 00:45:16,216
because he knew that she had
already been treated

817
00:45:16,258 --> 00:45:18,468
with a regimen
that was supposed

818
00:45:18,510 --> 00:45:20,554
to eradicate Lyme disease.

819
00:45:22,139 --> 00:45:24,474
And at that point,
then I really knew what she had.

820
00:45:24,516 --> 00:45:28,979
And I treated you
for 109 continuous days,

821
00:45:29,021 --> 00:45:31,607
and you progressively
improved.

822
00:45:32,399 --> 00:45:34,193
But at a certain point,

823
00:45:34,234 --> 00:45:37,446
policies changed
at Empire Blue Cross Blue Shield

824
00:45:37,487 --> 00:45:40,616
that made it almost impossible
for people like Vicki

825
00:45:40,657 --> 00:45:42,910
to receive the treatment
that she needed.

826
00:45:44,077 --> 00:45:45,704
There would be
no reimbursement for--

827
00:45:45,746 --> 00:45:47,372
for that kind of care.

828
00:45:50,083 --> 00:45:51,627
In the late 1990s,

829
00:45:51,668 --> 00:45:56,256
Vicki and about a dozen
other patients filed a lawsuit

830
00:45:56,298 --> 00:45:58,759
against Empire Blue Cross Blue Shield.

831
00:45:58,800 --> 00:46:01,887
The litigating attorney was
a gentleman named Ira Maurer.

832
00:46:01,929 --> 00:46:04,223
And he brought suit
against Empire

833
00:46:04,264 --> 00:46:06,642
on behalf of these patients.

834
00:46:06,683 --> 00:46:09,228
- When you've got
lots of disagreement

835
00:46:09,269 --> 00:46:11,730
as to what
is appropriate diagnosis

836
00:46:11,772 --> 00:46:13,357
and treatment
of Lyme disease,

837
00:46:13,398 --> 00:46:15,776
it makes it very hard
for a Lyme disease patient

838
00:46:15,817 --> 00:46:19,821
and a lawyer like myself
to go in there and challenge

839
00:46:19,863 --> 00:46:22,574
when an insurance company
refuses to pay

840
00:46:22,616 --> 00:46:26,036
for very expensive intravenous
antibiotic treatment.

841
00:46:27,788 --> 00:46:30,040
- One of the most revealing

842
00:46:30,082 --> 00:46:33,335
documents in the Lyme annals

843
00:46:33,377 --> 00:46:36,797
emerged from the case
of Vicki Logan.

844
00:46:36,839 --> 00:46:40,175
One of the witnesses
that came on to give testimony

845
00:46:40,217 --> 00:46:41,593
was Richard Sanchez,

846
00:46:41,635 --> 00:46:44,179
who worked
for the insurance company.

847
00:46:44,221 --> 00:46:47,975
He really detailed,
in a disturbing way,

848
00:46:48,016 --> 00:46:51,019
the way in which
insurance companies

849
00:46:51,061 --> 00:46:55,440
red-flagged Lyme disease
and put up roadblocks.

850
00:46:57,192 --> 00:46:59,152
- They raised the bar,
made it harder for people

851
00:46:59,194 --> 00:47:02,573
to qualify for the expensive
IV treatment,

852
00:47:02,614 --> 00:47:04,491
knowing that there were
some people

853
00:47:04,533 --> 00:47:08,829
who still would benefit from it
and wouldn't qualify.

854
00:47:08,871 --> 00:47:13,250
And he considered those people
to be the "low-hanging fruit,"

855
00:47:13,292 --> 00:47:16,920
the easy money to make
for the insurance company.

856
00:47:16,962 --> 00:47:20,924
- In the meantime,
some of the same people who created

857
00:47:20,966 --> 00:47:24,094
the Infectious Diseases Society of America
guidelines

858
00:47:24,136 --> 00:47:26,597
were consulting
with the insurers

859
00:47:26,638 --> 00:47:30,058
on their internal Lyme disease
guidelines policy.

860
00:47:31,894 --> 00:47:34,313
- So they created the guidelines
on the one hand,

861
00:47:34,354 --> 00:47:36,398
and then on the other hand,
they're getting, you know,

862
00:47:36,440 --> 00:47:41,069
$600 an hour in the 1990s
to deny these cases.

863
00:47:42,070 --> 00:47:47,576
Leonard Sigal said his fee
in 1996 was $560 an hour,

864
00:47:47,618 --> 00:47:49,870
and he even quipped
that it was quite helpful

865
00:47:49,912 --> 00:47:52,831
in meeting college tuition for his kids.

866
00:47:52,873 --> 00:47:56,460
- There's good proof that one
can do significant damage

867
00:47:56,502 --> 00:48:00,214
to patients by putting them
on long-term intravenous antibiotics.

868
00:48:00,255 --> 00:48:02,508
- If one side
in this controversy

869
00:48:02,549 --> 00:48:05,719
writes the protocol
and says no one may be treated

870
00:48:05,761 --> 00:48:08,680
beyond 28 days
with intravenous antibiotics,

871
00:48:08,722 --> 00:48:11,475
that's going to be disastrous
for patients with Lyme disease.

872
00:48:13,852 --> 00:48:18,273
- There was a move
by some of the insiders

873
00:48:18,315 --> 00:48:22,069
of the Infectious Diseases Society
to issue guidelines.

874
00:48:23,111 --> 00:48:25,531
I was part
of the original guidelines.

875
00:48:25,572 --> 00:48:27,699
I tried to advise
that we weren't ready

876
00:48:27,741 --> 00:48:29,451
to issue guidelines
about long-term disease.

877
00:48:29,493 --> 00:48:31,161
We didn't have the information.

878
00:48:31,203 --> 00:48:34,957
You have to be really careful
about issuing guidelines,

879
00:48:34,998 --> 00:48:36,375
'cause they get abused.

880
00:48:37,835 --> 00:48:39,711
The overseers said,
"We need to put out

881
00:48:39,753 --> 00:48:41,171
these Lyme disease guidelines."

882
00:48:41,213 --> 00:48:43,131
And there was some urgency
to do something.

883
00:48:43,173 --> 00:48:44,925
I mean, there's
Lyme disease out there.

884
00:48:46,260 --> 00:48:47,719
I said,
"Well, we're not ready,

885
00:48:47,761 --> 00:48:50,389
but I could
provide the language."

886
00:48:50,430 --> 00:48:54,101
"There are patients
who have ongoing symptoms

887
00:48:54,142 --> 00:48:57,437
"for which
the causation is unknown,

888
00:48:57,479 --> 00:49:00,858
"and it's to be left to the judgment
of the physician

889
00:49:00,899 --> 00:49:02,651
as to how to manage this."

890
00:49:03,944 --> 00:49:06,071
But that went too far
for them.

891
00:49:06,113 --> 00:49:10,784
And they removed my draft
and put in their own draft.

892
00:49:10,826 --> 00:49:13,203
It's like chronic Lyme disease
doesn't exist.

893
00:49:14,538 --> 00:49:16,373
That was Dr. Wormser.

894
00:49:16,415 --> 00:49:19,626
He issued a final declaration
as far as,

895
00:49:19,668 --> 00:49:21,503
"You can sign it,
but we're not gonna

896
00:49:21,545 --> 00:49:23,922
have a minority report,"
if you will.

897
00:49:23,964 --> 00:49:25,716
And so you're stuck.

898
00:49:25,757 --> 00:49:27,593
How are you gonna
undo something?

899
00:49:27,634 --> 00:49:29,052
Who's gonna back off?

900
00:49:31,513 --> 00:49:33,098
- Unfortunately,
I've seen people

901
00:49:33,140 --> 00:49:34,766
whose lives were destroyed

902
00:49:34,808 --> 00:49:37,436
because they went years
and years and years

903
00:49:37,477 --> 00:49:41,940
with no treatment
or inadequate treatment.

904
00:49:41,982 --> 00:49:43,942
And it ate away
at their bodies

905
00:49:43,984 --> 00:49:45,527
and their brains,

906
00:49:45,569 --> 00:49:49,156
at their organs,
until they succumbed.

907
00:49:49,198 --> 00:49:52,743
So it's a very complex situation,

908
00:49:52,784 --> 00:49:55,037
and the insurance companies
have made use

909
00:49:55,078 --> 00:49:58,582
of that complexity
to their economic advantage.

910
00:49:59,333 --> 00:50:02,628
- In my opinion, no way
was her care experimental.

911
00:50:02,669 --> 00:50:05,339
Her care was absolutely
medically necessary.

912
00:50:05,380 --> 00:50:07,633
And the necessity of it
was demonstrated--

913
00:50:07,674 --> 00:50:09,343
whenever she stopped
being treated,

914
00:50:09,384 --> 00:50:12,095
she would deteriorate
in objectively measurable ways,

915
00:50:12,137 --> 00:50:14,139
and when she got treated,
she would improve

916
00:50:14,181 --> 00:50:17,267
in objectively measurable ways.

917
00:50:17,309 --> 00:50:19,353
Vicki went for a number of years

918
00:50:19,394 --> 00:50:21,063
without the treatment
that she needed,

919
00:50:21,104 --> 00:50:24,983
and during that time,
her condition deteriorated.

920
00:50:25,025 --> 00:50:27,069
One of her last stays
at Northern Westchester,

921
00:50:27,110 --> 00:50:29,613
I undertook a long interview
with her.

922
00:50:29,655 --> 00:50:32,616
Vicki, you want to take
a couple of minutes

923
00:50:32,658 --> 00:50:35,202
to say anything
from your own heart?

924
00:51:08,443 --> 00:51:11,989
- She experienced a series
of grand mal seizures.

925
00:51:12,030 --> 00:51:14,199
Her friend Rosalyn
said that Vicki, you know,

926
00:51:14,241 --> 00:51:16,118
mouthed to her, "I love you."

927
00:51:16,159 --> 00:51:19,621
And within a few days,
you know,

928
00:51:19,663 --> 00:51:21,123
she was dead.

929
00:51:23,584 --> 00:51:26,545
Vicki's case
was reported in the--

930
00:51:26,587 --> 00:51:28,547
in the "New York Times'"
Science Times,

931
00:51:28,589 --> 00:51:30,924
I think in August of 1993.

932
00:51:30,966 --> 00:51:34,052
I fully expected that,
you know,

933
00:51:34,094 --> 00:51:35,554
that would be a turning point.

934
00:51:35,596 --> 00:51:38,891
And it's just incredible to me
that here we are,

935
00:51:38,932 --> 00:51:40,726
you know,
pushing 30 years later,

936
00:51:40,767 --> 00:51:43,478
and there's still
so much controversy

937
00:51:43,520 --> 00:51:46,815
and so much difficulty
for the patients.

938
00:51:48,066 --> 00:51:50,944
Let me tell you,
the deck was stacked against,

939
00:51:50,986 --> 00:51:53,447
you know, Vicki
and patients like her.

940
00:51:55,616 --> 00:51:57,326
[video static crescendos]

941
00:52:02,956 --> 00:52:04,791
- I need you say,
"When I stand up,

942
00:52:04,833 --> 00:52:06,627
"although maybe I'm weak
and I can't walk,

943
00:52:06,668 --> 00:52:08,212
but I'm not gonna pass out."

944
00:52:08,253 --> 00:52:09,379
And that's
when I'm gonna know.

945
00:52:09,421 --> 00:52:10,923
And that's the thing you have
to understand is,

946
00:52:10,964 --> 00:52:12,508
till the blood pressure
is controlled,

947
00:52:12,549 --> 00:52:14,343
I can't do the physical therapy
for the legs.

948
00:52:14,384 --> 00:52:15,344
- Right, right.
- Right?

949
00:52:15,385 --> 00:52:17,304
And that's gonna be essential
to getting this whole thing done.

950
00:52:17,346 --> 00:52:18,764
- Absolutely.
- So that's why I'm trying

951
00:52:18,805 --> 00:52:21,350
to go as fast as I can
but in a safe manner.

952
00:52:21,391 --> 00:52:22,809
- Right, right, right, right.

953
00:52:28,398 --> 00:52:31,193
- Julia, if you could put your arm out
a little bit for me...

954
00:52:36,156 --> 00:52:37,991
- Okay.
[whimpers]

955
00:52:38,033 --> 00:52:39,826
Dad, I don't wanna.
- I know.

956
00:52:39,868 --> 00:52:41,161
Let him do the blood pressure.

957
00:52:41,203 --> 00:52:42,746
- [whines]

958
00:52:42,788 --> 00:52:45,582
- Okay, you can
put her back now.

959
00:52:45,624 --> 00:52:46,792
- Wait, stay here.

960
00:52:46,834 --> 00:52:48,293
- I'm staying. I'm staying.

961
00:52:49,837 --> 00:52:51,505
- Let me just check her pulse.

962
00:53:09,857 --> 00:53:12,568
- She's at 140 beats
per minute.

963
00:53:12,609 --> 00:53:14,486
- [groans]

964
00:53:14,528 --> 00:53:16,530
[tense music]

965
00:53:16,572 --> 00:53:17,823
- When you feel
like you're dying

966
00:53:17,865 --> 00:53:20,367
and there's
nothing else to try,

967
00:53:20,409 --> 00:53:22,369
you reach
for anything you can.

968
00:53:22,411 --> 00:53:23,704
You have to take that risk.

969
00:53:24,663 --> 00:53:26,498
- Even if God came down
and told me,

970
00:53:26,540 --> 00:53:28,834
"You're doing the right thing,"
I'd be scared.

971
00:53:28,876 --> 00:53:32,296
I'm scared till this day,
giving her any medication.

972
00:53:34,840 --> 00:53:36,633
The hospitals wanted us

973
00:53:36,675 --> 00:53:39,678
to go into an in-patient
rehabilitation center

974
00:53:39,720 --> 00:53:43,765
to get physical therapy
and psychiatry.

975
00:53:43,807 --> 00:53:46,810
This is the only option
the hospitals gave me.

976
00:53:46,852 --> 00:53:49,229
They gave me nothing else.

977
00:53:49,271 --> 00:53:50,272
- You just say when, Julia.

978
00:53:52,024 --> 00:53:54,151
I'm starting now.

979
00:53:54,193 --> 00:53:56,403
- [whimpering]
Ow, ow, ow.

980
00:53:56,445 --> 00:53:58,155
- Nine seconds. Ten seconds.

981
00:53:58,197 --> 00:53:59,406
- Down, down.
Down.

982
00:53:59,448 --> 00:54:00,532
- Down? Down? You sure?

983
00:54:00,574 --> 00:54:01,700
- Down. Please go down.

984
00:54:01,742 --> 00:54:02,868
Go down, James.
- Try to get to 30.

985
00:54:02,910 --> 00:54:04,119
Try to get to 30.
- James, go down now.

986
00:54:04,161 --> 00:54:05,537
Please, James.

987
00:54:07,873 --> 00:54:09,499
- I know that Julia's had
plenty of breaks

988
00:54:09,541 --> 00:54:12,836
off of antibiotics
for several months at a time,

989
00:54:12,878 --> 00:54:16,298
and she's gotten sicker
off of medication.

990
00:54:16,340 --> 00:54:18,008
So what do you do?

991
00:54:18,884 --> 00:54:21,637
I can't just let her get worse.

992
00:54:21,678 --> 00:54:23,597
You know,
we have to try to fight

993
00:54:23,639 --> 00:54:26,725
until we feel like
we've exhausted everything.

994
00:54:26,767 --> 00:54:28,477
- Night sweats, hot and cold.

995
00:54:28,519 --> 00:54:30,270
Severe fatigue.
Shortness of breath.

996
00:54:30,312 --> 00:54:31,939
Sore throats
and swollen glands.

997
00:54:31,980 --> 00:54:34,399
Joint pain in the knuckles,
shoulders.

998
00:54:34,441 --> 00:54:36,276
Severe headaches.
Burning, tingling,

999
00:54:36,318 --> 00:54:38,153
and buzzing sensations
of the lower extremities

1000
00:54:38,195 --> 00:54:39,446
with loss of sensation.

1001
00:54:39,488 --> 00:54:41,782
Blurry vision.
Severe cognitive problems.

1002
00:54:41,823 --> 00:54:44,034
This is five months
into this treatment.

1003
00:54:44,076 --> 00:54:45,285
- Absolutely.
- The majority

1004
00:54:45,327 --> 00:54:46,954
of all these symptoms
are better.

1005
00:54:46,995 --> 00:54:49,581
- Don't open your eyes, Stephen,
until I tell you to open them.

1006
00:54:49,623 --> 00:54:52,376
Don't touch your eyes!
Don't--

1007
00:54:52,417 --> 00:54:54,837
all: ♪ Happy birthday… ♪

1008
00:54:54,878 --> 00:54:56,964
- I was forced
to write this appeal

1009
00:54:57,005 --> 00:54:59,800
because our insurance company
was calling Julia's condition

1010
00:54:59,842 --> 00:55:02,094
"not medically necessary."

1011
00:55:02,135 --> 00:55:05,472
I've paid high premiums
to my insurance company for years.

1012
00:55:05,514 --> 00:55:09,226
The fact that we were abandoned
by the insurance company

1013
00:55:09,268 --> 00:55:10,811
is unacceptable.

1014
00:55:12,729 --> 00:55:14,439
We still have people
showing us love

1015
00:55:14,481 --> 00:55:16,984
and showing us support.

1016
00:55:17,025 --> 00:55:20,612
Unfortunately, though,
the funds aren't there anymore.

1017
00:55:20,654 --> 00:55:22,281
Nobody really understands,
when you're dealing

1018
00:55:22,322 --> 00:55:25,033
with chronic disease,
you know,

1019
00:55:25,075 --> 00:55:27,160
treatment can go on
for a very long time.

1020
00:55:27,202 --> 00:55:29,663
[indistinct chatter]

1021
00:55:31,290 --> 00:55:34,209
- Hey, Cyclones fans,
direct your attention to the field.

1022
00:55:34,251 --> 00:55:36,670
It is time for our charity partner
of the night.

1023
00:55:36,712 --> 00:55:39,506
Julia has a long way to go
on her path to wellness,

1024
00:55:39,548 --> 00:55:41,300
and we need your help.

1025
00:55:41,341 --> 00:55:44,928
Please Google Julia Bruzzese
on GoFundMe,

1026
00:55:44,970 --> 00:55:47,139
and be as generous as you can.

1027
00:55:57,107 --> 00:56:00,235
- Support Julia Bruzzese
and her fight with Lyme disease!

1028
00:56:00,277 --> 00:56:03,113
Spin the wheel for $10
and win a prize.

1029
00:56:05,866 --> 00:56:08,827
[building tense music]

1030
00:56:08,869 --> 00:56:15,876
♪ ♪

1031
00:56:22,299 --> 00:56:24,134
[people screaming distantly]

1032
00:56:24,176 --> 00:56:27,137
[fireworks popping and whistling]

1033
00:56:28,472 --> 00:56:32,434
- When I'm with my friends,
even though I love my friends,

1034
00:56:32,476 --> 00:56:34,811
it's amazing to see
what their priorities are

1035
00:56:34,853 --> 00:56:37,523
and what mine are

1036
00:56:37,564 --> 00:56:38,982
and what they think about

1037
00:56:39,024 --> 00:56:42,110
when they're alone
in their bed at night

1038
00:56:42,152 --> 00:56:43,779
and what I think about.

1039
00:56:43,820 --> 00:56:45,989
[fireworks whistling]

1040
00:56:49,284 --> 00:56:52,579
Looking at a girl
or boy my age,

1041
00:56:52,621 --> 00:56:55,332
they kind of know
what their future's like.

1042
00:56:55,374 --> 00:56:59,169
That they're gonna
go to college, get a job.

1043
00:56:59,211 --> 00:57:02,548
But when I think about mine,
I just--

1044
00:57:02,589 --> 00:57:04,842
I know what I want to do,
and I know what my goals are.

1045
00:57:04,883 --> 00:57:08,720
And I just don't know
what I'm gonna be capable of.

1046
00:57:08,762 --> 00:57:12,516
And I think that's the scary part
of this disease,

1047
00:57:12,558 --> 00:57:14,643
that you don't know what
the next day is gonna be like.

1048
00:57:22,901 --> 00:57:25,863
[tense music]

1049
00:57:25,904 --> 00:57:29,741
♪ ♪

1050
00:57:29,783 --> 00:57:33,161
- During the 1990s, there was
all this fighting going on,

1051
00:57:33,203 --> 00:57:34,413
and I often wondered,

1052
00:57:34,454 --> 00:57:37,332
what is going
to change people's minds?

1053
00:57:39,042 --> 00:57:41,795
They didn't believe
that persistent infection

1054
00:57:41,837 --> 00:57:45,048
after antibiotic treatment
was possible.

1055
00:57:45,090 --> 00:57:48,218
Unless you can prove
the spirochete persists,

1056
00:57:48,260 --> 00:57:52,639
repeated antibiotic therapy
makes absolutely no sense.

1057
00:57:52,681 --> 00:57:55,642
And I agree with them,
that that is a fundamental thing

1058
00:57:55,684 --> 00:57:57,769
that you want
to be able to show.

1059
00:57:58,896 --> 00:58:03,275
What totally changed the world
of Lyme disease research

1060
00:58:03,317 --> 00:58:08,113
was in 2008, when one
of the world's best researchers

1061
00:58:08,155 --> 00:58:11,408
on Lyme disease
published a paper showing that,

1062
00:58:11,450 --> 00:58:16,496
despite antibiotic treatment,
the spirochete can persist.

1063
00:58:16,538 --> 00:58:19,124
And then Monica Embers
at Tulane published her paper

1064
00:58:19,166 --> 00:58:22,628
showing persistent infection
in the monkey model.

1065
00:58:22,669 --> 00:58:25,172
So if that happens in the mouse model
and the monkey model,

1066
00:58:25,214 --> 00:58:27,424
why wouldn't it happen
in the human?

1067
00:58:29,218 --> 00:58:32,888
- I lead the vector-borne
diseases corps here

1068
00:58:32,930 --> 00:58:35,474
at the Tulane Primate Center.

1069
00:58:35,516 --> 00:58:38,435
I can infect
ten different monkeys

1070
00:58:38,477 --> 00:58:40,896
with the same strain
of Borrelli burgdorferi

1071
00:58:40,938 --> 00:58:42,814
and see
very different outcomes

1072
00:58:42,856 --> 00:58:44,608
after antibiotic treatment.

1073
00:58:45,943 --> 00:58:48,695
What we found--some were
infected in the heart.

1074
00:58:48,737 --> 00:58:50,822
Some were infected
in the joints.

1075
00:58:50,864 --> 00:58:52,866
And probably the most
surprising aspect of it

1076
00:58:52,908 --> 00:58:56,286
was that we found
multiple spirochetes in the brains

1077
00:58:56,328 --> 00:58:59,831
of two of our
doxycycline-treated monkeys.

1078
00:58:59,873 --> 00:59:02,042
We know that they persisted.

1079
00:59:03,377 --> 00:59:06,755
- We're dealing
with a very unique situation here.

1080
00:59:06,797 --> 00:59:08,382
The current Lyme antibiotic

1081
00:59:08,423 --> 00:59:12,803
does not completely eradicate
Borrelli bacteria.

1082
00:59:12,845 --> 00:59:16,056
We found
this dandelion phenomenon.

1083
00:59:16,098 --> 00:59:19,184
The mower is equivalent
to the antibiotics

1084
00:59:19,226 --> 00:59:21,186
that chopped off the top part.

1085
00:59:21,228 --> 00:59:24,106
But because the root,
the persister, is still there,

1086
00:59:24,147 --> 00:59:25,774
they can grow back.

1087
00:59:25,816 --> 00:59:28,485
You need drugs
targeting both parts

1088
00:59:28,527 --> 00:59:31,363
in order
to more effectively cure

1089
00:59:31,405 --> 00:59:33,907
these persistent form
of the disease.

1090
00:59:35,534 --> 00:59:38,912
- I think the future
is good science

1091
00:59:38,954 --> 00:59:42,666
engaging top-notch researchers
and getting them excited

1092
00:59:42,708 --> 00:59:45,544
about the opportunities
in this field.

1093
00:59:45,586 --> 00:59:49,214
I've always stressed
that I think this field

1094
00:59:49,256 --> 00:59:51,842
could use people from the outside
taking a fresh look.

1095
00:59:52,718 --> 00:59:55,053
Just to be sitting
in one place together,

1096
00:59:55,095 --> 00:59:59,057
talking about the issues,
I've got very high hopes,

1097
00:59:59,099 --> 01:00:01,894
as do, I think,
everyone on the team,

1098
01:00:01,935 --> 01:00:04,521
that we're heading
in a very good direction.

1099
01:00:05,647 --> 01:00:07,941
- When I was at Tulane,
sitting in a room with, like,

1100
01:00:07,983 --> 01:00:09,985
15 people from all these
major universities,

1101
01:00:10,027 --> 01:00:12,654
all top researchers
in their field,

1102
01:00:12,696 --> 01:00:14,615
and for the first time ever,

1103
01:00:14,656 --> 01:00:16,325
they were all in there in the same room,

1104
01:00:16,366 --> 01:00:18,577
saying, "Okay, chronic Lyme,

1105
01:00:18,619 --> 01:00:19,828
"we may not have a cure.

1106
01:00:19,870 --> 01:00:21,872
"Chronic Bartonella,
we may not have a cure.

1107
01:00:21,914 --> 01:00:23,081
Let's work on this problem."

1108
01:00:23,123 --> 01:00:24,917
It's super hopeful.

1109
01:00:24,958 --> 01:00:26,293
But you still have these doctors

1110
01:00:26,335 --> 01:00:28,003
who are digging their heels
in the sand.

1111
01:00:28,045 --> 01:00:30,380
They're recognizing that there's--
a tide is turning,

1112
01:00:30,422 --> 01:00:32,257
and they're becoming
more vocal.

1113
01:00:33,175 --> 01:00:35,427
If you have three major
universities that come out--

1114
01:00:35,469 --> 01:00:37,471
Johns Hopkins, Tulane,
and Northeastern--

1115
01:00:37,513 --> 01:00:40,390
saying, "We can't kill Lyme
effectively in a test tube,"

1116
01:00:40,432 --> 01:00:41,642
then you have a major problem.

1117
01:00:41,683 --> 01:00:42,643
You have a major problem,

1118
01:00:42,684 --> 01:00:44,603
because your position becomes
increasingly untenable.

1119
01:00:44,645 --> 01:00:46,188
We have all this animal data
showing

1120
01:00:46,230 --> 01:00:47,689
that we're not curing
the monkeys,

1121
01:00:47,731 --> 01:00:49,566
we're not curing the dogs,
we're not curing the mice,

1122
01:00:49,608 --> 01:00:51,109
and we're not
curing the horses

1123
01:00:51,151 --> 01:00:52,861
with the same
antibiotic regimens

1124
01:00:52,903 --> 01:00:55,489
you're supposed to,
you know, cure people.

1125
01:00:55,531 --> 01:00:57,741
Of course it's gonna change.
Look, the truth is the truth,

1126
01:00:57,783 --> 01:00:59,660
and eventually,
it comes to the surface.

1127
01:00:59,701 --> 01:01:01,745
But it's bubbling up
very slowly,

1128
01:01:01,787 --> 01:01:04,790
like--like, glacially slowly,

1129
01:01:04,831 --> 01:01:07,793
too slow for people
who are desperately ill.

1130
01:01:07,835 --> 01:01:10,504
♪ ♪

1131
01:01:10,546 --> 01:01:14,341
- For years, the federal government
has spent very little

1132
01:01:14,383 --> 01:01:17,803
to look into the problems
of Lyme disease.

1133
01:01:17,845 --> 01:01:21,098
Compare that
to private foundations,

1134
01:01:21,139 --> 01:01:24,726
which have spent something
on the order of $100 million

1135
01:01:24,768 --> 01:01:28,063
in recent years
on research that today

1136
01:01:28,105 --> 01:01:30,858
is answering
some of the key questions

1137
01:01:30,899 --> 01:01:34,653
that weren't even being asked
by the federal government,

1138
01:01:34,695 --> 01:01:38,282
by the traditional
mainstream researchers.

1139
01:01:39,116 --> 01:01:42,160
They have written over and over

1140
01:01:42,202 --> 01:01:44,997
that Lyme disease
is not chronic.

1141
01:01:45,038 --> 01:01:48,458
They have published
in major American journals.

1142
01:01:48,500 --> 01:01:52,671
And the journals
are as invested in that view

1143
01:01:52,713 --> 01:01:57,759
as are these researchers,
as is the CDC and the NIH.

1144
01:01:59,052 --> 01:02:01,763
So to walk away from that now

1145
01:02:01,805 --> 01:02:05,475
would be very difficult
for them to do.

1146
01:02:15,611 --> 01:02:17,070
- We've come a long way

1147
01:02:17,112 --> 01:02:19,489
from when this seemed
like a pipe dream,

1148
01:02:19,531 --> 01:02:21,533
like, "Yeah, wow,
wouldn't this be great

1149
01:02:21,575 --> 01:02:23,452
if we could actually
image Borrelia?"

1150
01:02:23,493 --> 01:02:25,412
And here we are,
you know, two years later,

1151
01:02:25,454 --> 01:02:28,290
waiting to see
this all-important experiment.

1152
01:02:28,332 --> 01:02:31,043
You know, a year from now,
we'll be looking at a scan

1153
01:02:31,084 --> 01:02:34,087
of the first patient
getting this...

1154
01:02:34,129 --> 01:02:35,339
hopefully.

1155
01:02:35,380 --> 01:02:39,718
The current tests, you know,
only continue to fuel the debate

1156
01:02:39,760 --> 01:02:42,054
of whether chronic symptoms
are related

1157
01:02:42,095 --> 01:02:46,850
to the persistence
of living bacteria

1158
01:02:46,892 --> 01:02:51,813
or whether they're related to,
you know, some other cause.

1159
01:02:51,855 --> 01:02:55,359
If you could image this in the body,
I think that removes all doubt.

1160
01:02:55,400 --> 01:02:57,569
I'm not sure there's
a controversy anymore.

1161
01:02:57,611 --> 01:03:00,030
That, to me,
is pretty definitive evidence

1162
01:03:00,072 --> 01:03:01,949
that you've got the bacteria

1163
01:03:01,990 --> 01:03:05,077
and you need to be treated
for an active infection.

1164
01:03:05,118 --> 01:03:07,204
I should have told these bacteria,
"Don't piss me off."

1165
01:03:27,391 --> 01:03:29,434
- Oh. Whoa.
- Oh, wow.

1166
01:03:29,476 --> 01:03:31,228
both: Whoa.
- Whoa.

1167
01:03:31,270 --> 01:03:32,855
Look at that.
- Okay. [laughs]

1168
01:03:32,896 --> 01:03:34,231
- Starry sky.

1169
01:03:34,273 --> 01:03:36,358
Look at that.
- Oh, my gosh.

1170
01:03:36,400 --> 01:03:39,736
- That is, like,
spirochete city.

1171
01:03:39,778 --> 01:03:41,405
- You can see aggregates.
- Oh, my God.

1172
01:03:41,446 --> 01:03:43,282
- You can see a little bit
of smearing

1173
01:03:43,323 --> 01:03:45,200
and then a bunch of what looks
to be individuals.

1174
01:03:45,242 --> 01:03:47,244
- That's, like, unbelievable.
Look at that.

1175
01:03:48,161 --> 01:03:49,413
This is in the heart.

1176
01:03:49,454 --> 01:03:50,831
- Yup.

1177
01:03:53,208 --> 01:03:55,460
- What if you could
attach a toxin

1178
01:03:55,502 --> 01:03:57,504
that just wipes
those cells out?

1179
01:03:57,546 --> 01:03:59,381
I mean,
that's the magic bullet.

1180
01:03:59,423 --> 01:04:00,716
- Yup.
- Right?

1181
01:04:00,757 --> 01:04:04,303
Kill the target.
Avoid the normal tissue.

1182
01:04:04,344 --> 01:04:07,097
This is it.

1183
01:04:07,139 --> 01:04:08,974
This is, like,
proof of concept.

1184
01:04:09,016 --> 01:04:11,143
We can actually do this.

1185
01:04:11,185 --> 01:04:14,146
[soft dramatic music]

1186
01:04:14,188 --> 01:04:15,939
♪ ♪

1187
01:04:15,981 --> 01:04:17,441
Appropriate diagnosis
and treatment.

1188
01:04:17,482 --> 01:04:19,067
It's gonna save lives.

1189
01:04:20,944 --> 01:04:23,363
And you know what,
and vindication for everyone

1190
01:04:23,405 --> 01:04:27,868
who has been denied care
and told that they're crazy.

1191
01:04:27,910 --> 01:04:29,369
This is, like, for you.

1192
01:04:30,913 --> 01:04:32,789
Told, "It's all in your head."

1193
01:04:32,831 --> 01:04:34,166
But you know what,
it is all in your head.

1194
01:04:34,208 --> 01:04:35,751
It's right there.

1195
01:04:37,669 --> 01:04:39,254
It's in your head.
It's in your heart.

1196
01:04:39,296 --> 01:04:42,341
It's in your ear.
It's in your joints.

1197
01:04:54,853 --> 01:04:58,649
Good science
will trump bad behavior.

1198
01:05:00,067 --> 01:05:02,903
And when that change happens,
hopefully it won't just be

1199
01:05:02,945 --> 01:05:05,656
at the level
of clinical practice,

1200
01:05:05,697 --> 01:05:09,868
but it'll be public policy,
it'll be insurance coverage,

1201
01:05:09,910 --> 01:05:12,913
and all the other injustices
that have really been

1202
01:05:12,955 --> 01:05:16,875
perpetuated will sort of fall
by the wayside.

1203
01:05:16,917 --> 01:05:20,212
I'm very hopeful of the work
that we're doing.

1204
01:05:20,254 --> 01:05:24,007
Every day that I come in,
I push our team.

1205
01:05:24,049 --> 01:05:28,053
I implore them.
They all know your stories.

1206
01:05:28,095 --> 01:05:30,764
- Please join me
in welcoming Neil Spector.

1207
01:05:30,806 --> 01:05:32,182
Neil?

1208
01:05:32,224 --> 01:05:34,601
[applause]

1209
01:05:34,643 --> 01:05:38,856
- I want to tell you,
I think, a hopeful story.

1210
01:05:38,897 --> 01:05:40,858
We want to develop
a "theranostic"--

1211
01:05:40,899 --> 01:05:43,610
a therapeutic diagnostic
in one molecule.

1212
01:05:43,652 --> 01:05:44,611
- Here you are.
You're a physician.

1213
01:05:44,653 --> 01:05:47,990
You're connected.
- We need more research in this area.

1214
01:05:48,031 --> 01:05:50,701
That's one of my missions
is to raise awareness

1215
01:05:50,742 --> 01:05:53,161
that this is not a disease
that's easily diagnosed

1216
01:05:53,203 --> 01:05:55,622
and easily cured,
as many believe.

1217
01:05:55,664 --> 01:05:57,583
- Here is Dr. Neil Spector.

1218
01:05:57,624 --> 01:05:58,792
[applause]

1219
01:05:58,834 --> 01:06:01,461
- Thank you.
It's a great pleasure to be here.

1220
01:06:01,503 --> 01:06:05,048
This is my ten-year anniversary
of my transplant

1221
01:06:05,090 --> 01:06:08,093
from a misdiagnosis
of Lyme disease.

1222
01:06:10,679 --> 01:06:13,265
I know what it's like,
in a very tangible, real way,

1223
01:06:13,307 --> 01:06:15,642
to face your mortality.

1224
01:06:15,684 --> 01:06:18,937
So, you know,
I'm not somebody who doesn't

1225
01:06:18,979 --> 01:06:21,982
speak the language
of those suffering.

1226
01:06:22,024 --> 01:06:24,026
[cheers and applause]

1227
01:06:24,067 --> 01:06:26,278
It's hard, though.
You know, it's hard.

1228
01:06:26,320 --> 01:06:29,031
I mean, I get fatigued.
I get tired.

1229
01:06:29,072 --> 01:06:32,826
I need, frankly, to figure out
a better balance in my life,

1230
01:06:32,868 --> 01:06:35,162
because there are times
when I feel

1231
01:06:35,204 --> 01:06:37,289
like I'm heading
in a very bad direction

1232
01:06:37,331 --> 01:06:41,960
and losing sort of perspective
on my own life.

1233
01:06:46,507 --> 01:06:49,218
I may actually go home
and kind of relax

1234
01:06:49,259 --> 01:06:52,095
for a little while
before the next trip.

1235
01:06:52,137 --> 01:06:54,556
Hang out with my dog
and my family.

1236
01:06:56,475 --> 01:06:58,685
That'll be good.

1237
01:07:02,814 --> 01:07:05,817
[ambient sounds]

1238
01:07:15,744 --> 01:07:20,958
- It's been very complicated,
as far as treatment goes.

1239
01:07:20,999 --> 01:07:24,044
There's just not enough here
for Julia.

1240
01:07:25,337 --> 01:07:28,048
Even though we've seen
tremendous improvements

1241
01:07:28,090 --> 01:07:30,884
with Dr. Horowitz,

1242
01:07:30,926 --> 01:07:34,346
it's been, like, almost impossible
to try to overcome certain things

1243
01:07:34,388 --> 01:07:38,350
that I feel are really serious
in Julia's health.

1244
01:07:38,392 --> 01:07:40,602
So I've been doing
a lot of research

1245
01:07:40,644 --> 01:07:42,688
and looking at a lot
of different treatment options

1246
01:07:42,729 --> 01:07:45,566
in other countries.

1247
01:07:45,607 --> 01:07:47,359
The most promising thing
I found

1248
01:07:47,401 --> 01:07:49,820
was embryonic stem cells
in India.

1249
01:07:51,280 --> 01:07:53,031
Julia's been sick
for three years.

1250
01:07:53,073 --> 01:07:55,367
I think we've tried
everything.

1251
01:07:55,409 --> 01:07:56,952
There's one or two things
we haven't tried,

1252
01:07:56,994 --> 01:07:58,495
and this is one of them.

1253
01:07:59,788 --> 01:08:02,749
[tense music]

1254
01:08:02,791 --> 01:08:09,631
♪ ♪

1255
01:08:09,673 --> 01:08:12,259
Her diagnosis
for Lyme was missed.

1256
01:08:13,385 --> 01:08:15,387
You know, doesn't seem

1257
01:08:15,429 --> 01:08:17,723
like it's gonna be
an easy thing to fix.

1258
01:08:37,451 --> 01:08:39,077
- May I start?

1259
01:08:39,119 --> 01:08:41,121
Julia is a known case
of Lyme disease.

1260
01:08:41,163 --> 01:08:42,581
Is that correct?
- That is correct.

1261
01:08:42,622 --> 01:08:44,291
- And, Julia, how old are you?

1262
01:08:44,333 --> 01:08:45,834
- 15.
- Are you aware

1263
01:08:45,876 --> 01:08:47,878
that the [indistinct]
stem cell treatment

1264
01:08:47,920 --> 01:08:49,421
is an experimental treatment

1265
01:08:49,462 --> 01:08:51,715
and there are no guarantees
of any medical benefits

1266
01:08:51,756 --> 01:08:53,050
it will bear?

1267
01:08:53,091 --> 01:08:55,426
- Yes.
- And are you willing to undergo it?

1268
01:08:55,469 --> 01:08:57,930
- Yes.
- Thank you.

1269
01:08:57,970 --> 01:09:01,558
- You know, reading the consent,
I almost feel guilty.

1270
01:09:01,600 --> 01:09:04,102
You know, you always feel like
you're making the wrong decisions.

1271
01:09:04,144 --> 01:09:05,437
You don't know.

1272
01:09:05,478 --> 01:09:08,523
You know, as sufferers,
we're vulnerable,

1273
01:09:08,565 --> 01:09:14,530
so we, you know, are easy
to buy into anything, you know?

1274
01:09:14,571 --> 01:09:17,532
[tense music]

1275
01:09:17,574 --> 01:09:24,581
♪ ♪

1276
01:09:43,559 --> 01:09:45,935
- Okay,
just hold this position.

1277
01:09:45,978 --> 01:09:47,020
Can you just hold it there?
Yeah?

1278
01:09:47,062 --> 01:09:49,648
- Mm.
- Don't let it fall.

1279
01:09:49,690 --> 01:09:52,234
Bring it out.

1280
01:09:52,276 --> 01:09:54,236
Hold it.
Hold the position.

1281
01:09:54,278 --> 01:09:56,697
Try and hold it.
- There's no sensing.

1282
01:09:56,737 --> 01:09:58,699
- Mm-hmm. Mm-hmm.
- Can't sense, so...

1283
01:09:58,740 --> 01:10:00,032
Try and hold it.

1284
01:10:00,075 --> 01:10:01,952
Try and bring it out
towards me.

1285
01:10:02,911 --> 01:10:04,204
Bring it out.

1286
01:10:05,621 --> 01:10:07,165
Try and bring it out.

1287
01:10:07,207 --> 01:10:09,585
Out.
Try and take it in.

1288
01:10:11,670 --> 01:10:14,423
In. No?
- Mm.

1289
01:10:14,464 --> 01:10:16,049
- All right.

1290
01:10:25,726 --> 01:10:28,395
[soft dramatic music]

1291
01:10:28,437 --> 01:10:31,648
- One form of arthritis
may be caused by a germ

1292
01:10:31,690 --> 01:10:34,693
or virus that's being
transmitted by ticks,

1293
01:10:34,735 --> 01:10:37,362
the insects that thrive
in wooded areas.

1294
01:10:37,404 --> 01:10:38,864
The research could,
at the same time,

1295
01:10:38,906 --> 01:10:40,407
in the distant future,

1296
01:10:40,449 --> 01:10:42,159
lead to the development
of a vaccine

1297
01:10:42,201 --> 01:10:43,952
against this one form
of arthritis,

1298
01:10:43,994 --> 01:10:45,954
which is being called
Lyme arthritis.

1299
01:10:52,085 --> 01:10:56,340
- Around 1980, a law called
Bayh-Dole was passed.

1300
01:10:57,549 --> 01:10:59,675
Bayh-Dole changed
the patent law

1301
01:10:59,718 --> 01:11:04,306
to make it permissible
for grantees of federal funds

1302
01:11:04,348 --> 01:11:07,601
and also some of the federal
agencies themselves

1303
01:11:07,643 --> 01:11:11,063
to benefit from patents
that were acquired.

1304
01:11:11,980 --> 01:11:13,565
- This set the stage

1305
01:11:13,607 --> 01:11:15,317
for people who had,
at one time,

1306
01:11:15,359 --> 01:11:17,193
been just pure scientists

1307
01:11:17,236 --> 01:11:21,365
to actually make money
from their research.

1308
01:11:21,406 --> 01:11:24,785
And it set the stage
for some pretty concerning

1309
01:11:24,826 --> 01:11:27,079
conflicts of interest.

1310
01:11:27,120 --> 01:11:29,206
- So--okay, this is 1980.

1311
01:11:29,248 --> 01:11:30,541
So guess what.

1312
01:11:30,582 --> 01:11:36,171
1982, that's when the Borrelia
organism was discovered.

1313
01:11:37,464 --> 01:11:40,342
A, the Lyme organism
is arguably one

1314
01:11:40,384 --> 01:11:43,554
of the most complex bacteria
known to man,

1315
01:11:43,594 --> 01:11:47,599
and, B, arguably
or maybe inarguably,

1316
01:11:47,641 --> 01:11:50,769
it is the most heavily patented
bacteria known to man.

1317
01:11:50,811 --> 01:11:53,772
[tense music]

1318
01:11:53,814 --> 01:11:56,733
♪ ♪

1319
01:11:56,775 --> 01:11:59,027
So everybody has a piece
of this bacteria.

1320
01:12:01,697 --> 01:12:03,782
- A study out tonight
concludes lab tests

1321
01:12:03,824 --> 01:12:06,785
for Lyme disease
are strikingly inaccurate.

1322
01:12:06,827 --> 01:12:09,288
Experts say tests made
by more than 30 companies

1323
01:12:09,329 --> 01:12:12,666
who jumped into the business
are just not very good.

1324
01:12:12,708 --> 01:12:16,003
The government is now pumping money
into developing a better blood test--

1325
01:12:16,044 --> 01:12:17,421
a little late, experts say,

1326
01:12:17,462 --> 01:12:20,174
but a recognition that what was
once a regional problem

1327
01:12:20,215 --> 01:12:21,508
is now a national one.

1328
01:12:22,300 --> 01:12:25,304
- So in 1994,

1329
01:12:25,344 --> 01:12:29,516
the major players in the NIH,
in the CDC,

1330
01:12:29,558 --> 01:12:33,103
and the IDSA
came together for a conference

1331
01:12:33,145 --> 01:12:38,150
in Dearborn, Michigan,
to develop a standard test.

1332
01:12:38,192 --> 01:12:41,403
But the huge backdrop
was a vaccine.

1333
01:12:41,445 --> 01:12:44,072
A vaccine was in development.

1334
01:12:44,114 --> 01:12:49,827
And it would affect the way
this test was constructed.

1335
01:12:52,748 --> 01:12:56,126
- A Western blot is a test
where they actually take a blotter,

1336
01:12:56,168 --> 01:12:58,921
and on this blotter,
they take a drop of your blood

1337
01:12:58,962 --> 01:13:00,464
or your serum,
and they put it on the blot,

1338
01:13:00,505 --> 01:13:03,300
and it starts to move;
it migrates.

1339
01:13:03,342 --> 01:13:06,929
The bacteria has proteins
on the outside of its surface,

1340
01:13:06,969 --> 01:13:11,808
and your immune system recognizes
some of these specific proteins.

1341
01:13:11,850 --> 01:13:13,809
It's like a lock and a key.

1342
01:13:13,852 --> 01:13:16,355
If you have five
of these specific proteins

1343
01:13:16,396 --> 01:13:18,357
that show you've been
exposed to Lyme,

1344
01:13:18,398 --> 01:13:21,401
you have a CDC positive
Western blot.

1345
01:13:21,443 --> 01:13:25,405
- But what these powers
of Lyme disease decided to do

1346
01:13:25,447 --> 01:13:29,034
was to eliminate
two of those key markers,

1347
01:13:29,076 --> 01:13:30,994
because they were going
to be used

1348
01:13:31,036 --> 01:13:34,121
in the development
of a vaccine.

1349
01:13:34,164 --> 01:13:37,000
Those two markers
would be used

1350
01:13:37,041 --> 01:13:41,171
to spur the antibody response
when you got the vaccine.

1351
01:13:41,213 --> 01:13:45,175
So they decided they needed
to remove them from the test

1352
01:13:45,217 --> 01:13:48,136
so that if you had been vaccinated,

1353
01:13:48,178 --> 01:13:51,849
you would not test positive
for Lyme disease.

1354
01:13:51,889 --> 01:13:53,517
- Now, why is that important?

1355
01:13:53,559 --> 01:13:56,562
When you take away
the 31 and 34 bands,

1356
01:13:56,603 --> 01:13:58,897
which are highly specific
for Lyme,

1357
01:13:58,939 --> 01:14:00,816
you're then taking away
the possibility

1358
01:14:00,858 --> 01:14:03,402
for those people
who've not had the vaccine

1359
01:14:03,443 --> 01:14:05,737
to help diagnose this disease.

1360
01:14:05,779 --> 01:14:07,656
So if you come
to a doctor's office,

1361
01:14:07,698 --> 01:14:10,534
"Doc, I got a swollen knee.
I can't walk. I'm tired.

1362
01:14:10,576 --> 01:14:13,161
My memory's not working.
I've seen 20 doctors,"

1363
01:14:13,202 --> 01:14:15,371
and they bring
in their Western blot

1364
01:14:15,414 --> 01:14:17,583
and they've got four
out of five bands,

1365
01:14:17,624 --> 01:14:21,128
but your fifth band happens
to be the 31 or 34,

1366
01:14:21,170 --> 01:14:23,755
they would call that
a CDC negative Western blot,

1367
01:14:23,797 --> 01:14:25,966
yet you have Lyme disease.

1368
01:14:29,303 --> 01:14:30,846
- There is a vaccine,

1369
01:14:30,888 --> 01:14:35,434
but now there are reports
of serious side effects.

1370
01:14:37,477 --> 01:14:40,564
- By the late 1990s,
there were two companies

1371
01:14:40,606 --> 01:14:44,318
making two competing vaccines
that were almost identical.

1372
01:14:44,359 --> 01:14:47,404
One of them got mired
in lawsuits

1373
01:14:47,446 --> 01:14:49,573
because people claimed
there were side effects,

1374
01:14:49,615 --> 01:14:54,870
and it was pulled from the market,
leaving only LYMErix.

1375
01:14:54,912 --> 01:14:57,080
There were a lot of unanswered
questions about LYMErix.

1376
01:14:57,121 --> 01:14:59,666
The FDA panel that passed it,

1377
01:14:59,708 --> 01:15:02,252
they said that there are
a lot of unknowns here,

1378
01:15:02,294 --> 01:15:05,088
but they were passing it
through anyway.

1379
01:15:05,130 --> 01:15:08,675
- The safety issue here seems
to me to be very complicated

1380
01:15:08,717 --> 01:15:11,553
compared to any vaccine I know
that has been licensed.

1381
01:15:11,594 --> 01:15:13,388
Those who did the trial
have unearthed

1382
01:15:13,430 --> 01:15:16,225
some very interesting,
sinister possibilities

1383
01:15:16,266 --> 01:15:18,143
that may or may not be real.

1384
01:15:18,184 --> 01:15:22,147
And as I said earlier,
rare events will become common

1385
01:15:22,189 --> 01:15:25,025
when a million people
are vaccinated.

1386
01:15:25,067 --> 01:15:27,528
- I might comment that this
is fairly rare for a vaccine

1387
01:15:27,568 --> 01:15:30,112
to be voted on
with so much ambivalence.

1388
01:15:30,155 --> 01:15:32,907
So that is all
for the formal vote.

1389
01:15:34,117 --> 01:15:35,869
- In the years
since it's been on the market,

1390
01:15:35,911 --> 01:15:37,621
600,000 people have taken it.

1391
01:15:37,663 --> 01:15:42,501
Nearly 300 adverse reactions
have been reported to the FDA.

1392
01:15:42,543 --> 01:15:45,170
- Panel of experts
that advises the FDA

1393
01:15:45,212 --> 01:15:47,673
found the story so compelling
that it asked the agency

1394
01:15:47,714 --> 01:15:50,008
to carry out
a large-scale investigation

1395
01:15:50,050 --> 01:15:52,344
of possible harmful effects
of the vaccine.

1396
01:15:52,386 --> 01:15:55,681
- There was a meeting at FDA.

1397
01:15:55,722 --> 01:15:59,101
I was actually invited
to go to that meeting.

1398
01:15:59,142 --> 01:16:01,645
The star witness
at this FDA meeting

1399
01:16:01,687 --> 01:16:06,066
was the chief scientist
for the Connaught vaccine.

1400
01:16:06,108 --> 01:16:09,027
So you got it? Like--like, there was
Glaxo and Connaught.

1401
01:16:09,068 --> 01:16:11,029
Connaught pulled out.

1402
01:16:11,071 --> 01:16:14,782
He said, "Since LYMErix
has been given out

1403
01:16:14,825 --> 01:16:17,160
"to so many people,

1404
01:16:17,202 --> 01:16:21,707
"we can see that there are
some very severe side effects.

1405
01:16:21,748 --> 01:16:24,751
"These are not
common side effects,

1406
01:16:24,793 --> 01:16:28,046
"but some of them
are very bad,

1407
01:16:28,088 --> 01:16:31,341
"and I would never recommend
vaccinating people

1408
01:16:31,383 --> 01:16:33,677
with this vaccine."

1409
01:16:33,719 --> 01:16:36,180
- There is no such thing
as a perfect vaccine.

1410
01:16:36,221 --> 01:16:40,017
What we can say is that
this vaccine is very effective,

1411
01:16:40,058 --> 01:16:42,936
and it's very well-tolerated.

1412
01:16:42,978 --> 01:16:44,271
- It's been a nightmare.

1413
01:16:44,313 --> 01:16:48,483
Prior to this, I was hunting,
fishing, hiking.

1414
01:16:48,525 --> 01:16:51,528
- How much has it
changed your life?

1415
01:16:51,570 --> 01:16:54,948
- I don't have a life anymore.

1416
01:16:57,451 --> 01:17:00,579
- In April, the manufacturer
of a Lyme disease vaccine

1417
01:17:00,621 --> 01:17:03,248
took it off the market,
citing poor sales

1418
01:17:03,290 --> 01:17:06,627
following unproven allegations
of side effects.

1419
01:17:07,835 --> 01:17:11,423
- The vaccine was taken
off the market in 2002.

1420
01:17:12,549 --> 01:17:16,553
We have not had a Lyme disease
vaccine for 20 years,

1421
01:17:16,594 --> 01:17:20,557
and yet those two markers
were not restored to the test.

1422
01:17:22,851 --> 01:17:25,812
If you were bitten
by a tick tomorrow,

1423
01:17:25,853 --> 01:17:29,858
this is the test that would be used
to diagnose you.

1424
01:17:33,820 --> 01:17:37,032
Many people have
invested their careers

1425
01:17:37,074 --> 01:17:40,994
in this model of Lyme disease:

1426
01:17:41,036 --> 01:17:46,041
it's easy to diagnose,
it's straightforward to cure.

1427
01:17:46,083 --> 01:17:49,419
And that is the story
that prevails today.

1428
01:17:50,838 --> 01:17:54,007
But it's far different
from where we started.

1429
01:17:54,049 --> 01:17:56,927
[building dramatic music]

1430
01:17:56,969 --> 01:18:03,976
♪ ♪

1431
01:18:08,272 --> 01:18:11,650
In the beginning,
there was openness.

1432
01:18:11,692 --> 01:18:15,279
There was willingness
to consider lots of possibilities.

1433
01:18:16,446 --> 01:18:19,950
But over time, doors closed.

1434
01:18:21,159 --> 01:18:22,702
When I went back and looked

1435
01:18:22,744 --> 01:18:26,582
at some of the early
scientific literature,

1436
01:18:26,623 --> 01:18:30,043
I found a sort
of familiar illness.

1437
01:18:31,962 --> 01:18:35,382
So I'm just going
to read from a 1994 letter

1438
01:18:35,424 --> 01:18:37,925
by Allen Steere.

1439
01:18:37,968 --> 01:18:40,137
"It has become
increasingly apparent

1440
01:18:40,179 --> 01:18:42,014
"that the Lyme disease
spirochete,

1441
01:18:42,055 --> 01:18:43,639
"Borrelia burgdorferi,

1442
01:18:43,682 --> 01:18:47,186
"may persist
in some patients for years.

1443
01:18:47,227 --> 01:18:50,230
"Of particular concern,
recent studies have shown

1444
01:18:50,272 --> 01:18:53,192
"that the spirochete may persist
in the nervous system

1445
01:18:53,233 --> 01:18:57,612
and may cause chronic
neurologic involvement."

1446
01:18:57,654 --> 01:19:01,532
The word "chronic"
is there a couple of times.

1447
01:19:01,575 --> 01:19:05,329
- Some of the authors who have
signed on to those guidelines,

1448
01:19:05,370 --> 01:19:06,996
if you look
at their published work

1449
01:19:07,039 --> 01:19:09,666
from the late '80s
and early '90s,

1450
01:19:09,708 --> 01:19:14,630
their words say exactly
what we say--chronic.

1451
01:19:14,671 --> 01:19:17,216
- Once you get Lyme disease,
your body's immune system

1452
01:19:17,257 --> 01:19:19,092
doesn't deal with it terribly well.

1453
01:19:19,134 --> 01:19:21,719
It doesn't clear
that spirochete from your body,

1454
01:19:21,762 --> 01:19:25,139
and you can be infected
for virtually forever.

1455
01:19:25,182 --> 01:19:27,351
- And it's
a very scary disease.

1456
01:19:27,392 --> 01:19:28,769
- It doesn't really
have to be.

1457
01:19:28,809 --> 01:19:31,980
I think it's overemphasized
how bad it can be.

1458
01:19:32,022 --> 01:19:34,233
With prompt treatment
and recognition,

1459
01:19:34,273 --> 01:19:35,984
it's not a big deal.

1460
01:19:37,443 --> 01:19:40,364
- Another concept
that has been more or less

1461
01:19:40,405 --> 01:19:43,367
brushed aside
is whether a mother

1462
01:19:43,407 --> 01:19:47,037
can pass Lyme disease
on to her unborn baby.

1463
01:19:47,079 --> 01:19:50,040
- It was a dramatic
and frightening new development:

1464
01:19:50,082 --> 01:19:51,875
the germ that causes Lyme

1465
01:19:51,916 --> 01:19:54,169
can also travel
through the placenta.

1466
01:19:54,210 --> 01:19:55,838
- On occasion,
a pregnant woman

1467
01:19:55,879 --> 01:19:57,880
has been able
to transmit the illness

1468
01:19:57,923 --> 01:20:01,635
to the developing child
in the uterus.

1469
01:20:01,677 --> 01:20:03,846
This may have
serious complications

1470
01:20:03,887 --> 01:20:05,806
for the developing child.

1471
01:20:05,848 --> 01:20:08,934
We don't know how frequently
this happens at this point,

1472
01:20:08,976 --> 01:20:11,895
but it is something
that we are concerned about.

1473
01:20:11,937 --> 01:20:14,857
- They did autopsies
on these babies

1474
01:20:14,898 --> 01:20:17,609
and found spirochetes
in their tissues,

1475
01:20:17,651 --> 01:20:20,445
in their hearts,
in their lungs.

1476
01:20:20,487 --> 01:20:23,448
This was solid science.

1477
01:20:23,490 --> 01:20:26,660
But it became something
that was dismissed

1478
01:20:26,702 --> 01:20:29,663
in the mainstream literature
and practice.

1479
01:20:30,789 --> 01:20:34,751
They used to acknowledge
that chronic Lyme disease was real.

1480
01:20:34,793 --> 01:20:37,963
They used to acknowledge
congenital Lyme disease.

1481
01:20:38,755 --> 01:20:40,382
- But at a certain point
in time,

1482
01:20:40,424 --> 01:20:43,218
that became dogma,
that there's no such thing

1483
01:20:43,260 --> 01:20:45,179
as chronic Lyme disease, period.

1484
01:20:45,219 --> 01:20:47,306
End of story.

1485
01:20:47,347 --> 01:20:49,850
In order to qualify a vaccine,

1486
01:20:49,892 --> 01:20:53,478
it's much more helpful to have
a fairly simplistic model,

1487
01:20:53,520 --> 01:20:56,190
where you can easily tell
who has the disease

1488
01:20:56,231 --> 01:20:58,358
and who doesn't
have the disease.

1489
01:20:58,400 --> 01:21:02,612
And furthermore, you banish
the notion that the infection

1490
01:21:02,654 --> 01:21:06,407
can persist despite
application of treatment.

1491
01:21:06,450 --> 01:21:09,912
If you acknowledge
those biologic realities,

1492
01:21:09,952 --> 01:21:12,581
it makes it considerably
more difficult

1493
01:21:12,623 --> 01:21:14,291
to qualify a vaccine.

1494
01:21:23,425 --> 01:21:26,637
- After years of research,
it begs the question,

1495
01:21:26,678 --> 01:21:29,514
why is there still
no vaccine people can get

1496
01:21:29,556 --> 01:21:31,975
to prevent Lyme disease?

1497
01:21:32,017 --> 01:21:33,184
- I think the time has come

1498
01:21:33,227 --> 01:21:36,396
to reconsider the decision.

1499
01:21:36,438 --> 01:21:39,608
Lyme disease is the only
infection that I know of

1500
01:21:39,650 --> 01:21:42,486
for which
there is an effective vaccine,

1501
01:21:42,528 --> 01:21:45,531
but it's not available
to the public.

1502
01:21:46,698 --> 01:21:48,700
- And in fact,
the French biotech firm

1503
01:21:48,742 --> 01:21:52,037
Valneva
is testing a new vaccine

1504
01:21:52,079 --> 01:21:54,248
that is similar to LYMErix.

1505
01:21:54,289 --> 01:21:55,749
- Is this vaccine based

1506
01:21:55,791 --> 01:21:58,043
on different medicine
than the old one?

1507
01:21:58,085 --> 01:22:00,754
- No, actually, it's quite similar
to the old vaccine.

1508
01:22:00,796 --> 01:22:02,339
They did change it
a little bit.

1509
01:22:02,380 --> 01:22:04,550
They removed a protein
which they thought

1510
01:22:04,591 --> 01:22:06,343
may have been causing
some health problems.

1511
01:22:06,385 --> 01:22:09,096
But we now know
that the old vaccine

1512
01:22:09,137 --> 01:22:11,557
actually doesn't cause
any health problems.

1513
01:22:11,598 --> 01:22:14,559
[inquisitive music]

1514
01:22:14,601 --> 01:22:15,894
♪ ♪

1515
01:22:15,936 --> 01:22:17,938
- There are so many
conspiracy theories

1516
01:22:17,980 --> 01:22:19,606
swirling around the public,

1517
01:22:19,648 --> 01:22:21,817
like the anti-vaxxers, right?

1518
01:22:23,360 --> 01:22:26,446
And I think what happens
with Lyme disease

1519
01:22:26,487 --> 01:22:29,867
is that it gets swept up
into all of that,

1520
01:22:29,907 --> 01:22:33,036
when in fact,
in this situation,

1521
01:22:33,077 --> 01:22:36,290
we're not talking
about a conspiracy.

1522
01:22:37,249 --> 01:22:41,420
We're talking
about flawed science,

1523
01:22:41,460 --> 01:22:43,880
science that has
been reinvented

1524
01:22:43,922 --> 01:22:46,633
to facilitate products.

1525
01:22:48,594 --> 01:22:52,097
- It would be great
if we had a vaccine

1526
01:22:52,139 --> 01:22:54,516
that was effective and safe.

1527
01:22:54,558 --> 01:22:58,437
But that's not gonna solve
our problem of ticks.

1528
01:22:58,478 --> 01:23:01,440
And moreover, we can protect
ourselves from Lyme disease,

1529
01:23:01,481 --> 01:23:05,318
but there's other things,
as we know, in ticks.

1530
01:23:05,360 --> 01:23:09,865
We need a vaccine that would
attack all of these illnesses.

1531
01:23:09,907 --> 01:23:15,412
An anti-tick vaccine really
would be the ideal approach.

1532
01:23:15,454 --> 01:23:19,625
But beyond that, we have
this other elephant in the room.

1533
01:23:19,666 --> 01:23:22,544
We have the many, many people,

1534
01:23:22,585 --> 01:23:26,632
year after year,
who remain sick.

1535
01:23:28,467 --> 01:23:31,136
- This is a hard problem.

1536
01:23:31,178 --> 01:23:33,680
The way to resolve it,

1537
01:23:33,722 --> 01:23:37,518
it's not to make everything
so simple and so cut and dry.

1538
01:23:37,559 --> 01:23:41,188
It is to really look
at the nuance.

1539
01:23:41,230 --> 01:23:42,981
I really did come to believe,

1540
01:23:43,023 --> 01:23:45,943
after all of this research
and investigation,

1541
01:23:45,984 --> 01:23:50,656
that the definition of Lyme disease
had been twisted

1542
01:23:50,697 --> 01:23:54,952
to accommodate the passage
of that vaccine.

1543
01:23:54,993 --> 01:23:57,162
It was a business interest.

1544
01:23:57,204 --> 01:24:00,999
It was a rationalization
in the interest of a product

1545
01:24:01,041 --> 01:24:03,043
but not the patient.

1546
01:24:15,931 --> 01:24:17,391
[elevator bell dings]

1547
01:24:19,518 --> 01:24:22,521
[indistinct chatter]

1548
01:24:30,571 --> 01:24:33,866
- I want you to look at that.
- Yeah.

1549
01:24:33,907 --> 01:24:35,951
- This is your brain stem.
- Yes.

1550
01:24:35,993 --> 01:24:39,746
- This is responsible
for balance,

1551
01:24:39,788 --> 01:24:43,541
for swallowing, for breathing,
for heart rate.

1552
01:24:44,751 --> 01:24:47,462
This very tip of the brain
right here

1553
01:24:47,504 --> 01:24:49,255
is your motor strip.

1554
01:24:49,298 --> 01:24:51,758
It starts with your hips
and your legs.

1555
01:24:54,344 --> 01:24:57,139
Okay.
So look.

1556
01:24:59,141 --> 01:25:01,059
Gray.
- Yeah.

1557
01:25:01,101 --> 01:25:03,896
- Orange, purple, white,
that's healthy.

1558
01:25:03,937 --> 01:25:07,773
- Okay.
- These colors are damaged.

1559
01:25:07,816 --> 01:25:09,985
Number five is black.

1560
01:25:10,027 --> 01:25:12,279
- Yeah.
- See the black?

1561
01:25:12,321 --> 01:25:14,615
You have a lot
of damage to it.

1562
01:25:14,656 --> 01:25:17,534
You can't even see
your brain stem.

1563
01:25:17,576 --> 01:25:21,079
Your brain stem
is completely black.

1564
01:25:21,121 --> 01:25:26,710
Your motor strip,
sensory, all black.

1565
01:25:26,752 --> 01:25:28,420
That's why you can't
move your legs.

1566
01:25:28,462 --> 01:25:30,589
That's why you can't
feel your legs.

1567
01:25:32,966 --> 01:25:34,968
[choking up]
You have your answer today.

1568
01:25:36,844 --> 01:25:38,514
- So I'm not going crazy?

1569
01:25:38,555 --> 01:25:40,516
- You're not going crazy.

1570
01:25:44,811 --> 01:25:47,189
Dr. Shroff said

1571
01:25:47,231 --> 01:25:52,736
that without treatment for Lyme,
this gets worse,

1572
01:25:52,778 --> 01:25:56,031
and pretty soon,
you would have lost everything.

1573
01:25:58,075 --> 01:26:01,827
Three years of treatment,
and I keep questioning myself

1574
01:26:01,870 --> 01:26:04,665
if I'm doing the right thing.

1575
01:26:04,706 --> 01:26:06,625
We've been doing
the right thing.

1576
01:26:06,666 --> 01:26:08,460
We've been keeping it at bay.

1577
01:26:08,502 --> 01:26:11,463
What did you tell me today
during your MRI?

1578
01:26:11,505 --> 01:26:13,549
You said, "Why do we have
to do this again?

1579
01:26:13,590 --> 01:26:15,550
They're not gonna find anything."

1580
01:26:15,592 --> 01:26:17,511
See? You found something.

1581
01:26:17,553 --> 01:26:20,514
This is why you have
the issues you have.

1582
01:26:20,556 --> 01:26:22,349
Look. They're right there.

1583
01:26:22,391 --> 01:26:23,392
That's damage.

1584
01:26:25,686 --> 01:26:27,437
You're not going crazy.

1585
01:26:27,478 --> 01:26:30,440
[tense music]

1586
01:26:30,482 --> 01:26:37,489
♪ ♪

1587
01:26:46,331 --> 01:26:49,293
[somber music]

1588
01:26:49,334 --> 01:26:52,087
♪ ♪

1589
01:26:52,129 --> 01:26:54,380
Julia and I initially were
supposed to be in India

1590
01:26:54,423 --> 01:26:55,591
for three months.

1591
01:26:59,178 --> 01:27:02,806
But the clinic shut down,
and we were forced to leave.

1592
01:27:08,853 --> 01:27:10,647
Unfortunately,
the stem cells really didn't

1593
01:27:10,689 --> 01:27:12,773
change that much.

1594
01:27:12,816 --> 01:27:14,359
A lot of letdowns.

1595
01:27:14,401 --> 01:27:16,820
But if we want
to get Julia better,

1596
01:27:16,862 --> 01:27:19,323
we have to give trust.

1597
01:27:19,364 --> 01:27:20,782
We have to try.

1598
01:27:20,824 --> 01:27:23,785
[hopeful music]

1599
01:27:23,827 --> 01:27:26,746
♪ ♪

1600
01:27:26,788 --> 01:27:29,458
We long for her to walk.

1601
01:27:29,499 --> 01:27:31,919
[indistinct chatter]

1602
01:27:31,960 --> 01:27:34,254
I would like to see her dance
with her friends.

1603
01:27:34,296 --> 01:27:35,923
I'd like to dance with her.

1604
01:27:38,133 --> 01:27:42,888
It's the simplest things that
we take for granted every day

1605
01:27:42,930 --> 01:27:45,474
that I pray for with Julia.

1606
01:27:45,516 --> 01:27:47,809
- My legs hurt.

1607
01:27:47,851 --> 01:27:49,686
- But we'll get there.
[sniffles]

1608
01:27:49,728 --> 01:27:51,438
We'll get there slowly.

1609
01:27:51,480 --> 01:27:53,857
And I think
when we do get there,

1610
01:27:53,898 --> 01:27:56,235
it's gonna be very rewarding.

1611
01:28:04,243 --> 01:28:07,246
[indistinct chatter]

1612
01:28:10,749 --> 01:28:12,918
- Let's have a round
of applause once again

1613
01:28:12,960 --> 01:28:14,545
for Julia Rose.

1614
01:28:14,585 --> 01:28:17,965
[cheers and applause]

1615
01:28:18,005 --> 01:28:20,592
- The 16th candle,
I've been told,

1616
01:28:20,634 --> 01:28:24,847
is for your greatest love,
or even your hero.

1617
01:28:24,888 --> 01:28:28,642
When I thought about
who that one person was,

1618
01:28:28,684 --> 01:28:31,019
one person came to mind.

1619
01:28:31,061 --> 01:28:33,230
And that was you, Dad.

1620
01:28:34,898 --> 01:28:38,568
Dad, the greatest doctors
in the world

1621
01:28:38,610 --> 01:28:41,737
weren't able to figure out
what was wrong with me,

1622
01:28:41,780 --> 01:28:44,074
but you were.

1623
01:28:44,116 --> 01:28:47,536
Without you, I'm afraid
I wouldn't be here today,

1624
01:28:47,577 --> 01:28:49,955
giving you guys a speech.

1625
01:28:49,996 --> 01:28:52,583
[cheers and applause]

1626
01:28:52,624 --> 01:28:57,045
Thank you for holding my hand
through every blood test,

1627
01:28:57,087 --> 01:28:58,964
every scary procedure,

1628
01:28:59,005 --> 01:29:01,508
and every single hard time.

1629
01:29:02,759 --> 01:29:05,387
You are my hero,
my greatest love,

1630
01:29:05,429 --> 01:29:07,681
and my biggest inspiration.

1631
01:29:10,726 --> 01:29:13,937
My idea of a miracle
has definitely changed.

1632
01:29:13,978 --> 01:29:16,273
- Holy Father!

1633
01:29:16,315 --> 01:29:18,442
- That day,
I asked for a miracle,

1634
01:29:18,483 --> 01:29:21,904
and my miracle, in my mind,
was getting up from the chair

1635
01:29:21,945 --> 01:29:23,655
and walking
and going back to that life

1636
01:29:23,697 --> 01:29:27,951
of normalcy and dancing, and--
and it is still.

1637
01:29:27,993 --> 01:29:30,495
That's--you know,
that would be a miracle.

1638
01:29:30,537 --> 01:29:32,414
But I think miracles
happen every day.

1639
01:29:32,456 --> 01:29:35,584
I think that me sitting here
talking to you is a miracle.

1640
01:29:36,502 --> 01:29:38,629
What happened to me
and the reaching out

1641
01:29:38,670 --> 01:29:41,130
and the love,
that's a miracle.

1642
01:29:41,173 --> 01:29:43,133
[applause]

1643
01:29:43,175 --> 01:29:45,636
And I think
we don't even realize it.

1644
01:29:45,677 --> 01:29:49,223
The little things every day
that we have are miracles.

1645
01:29:50,516 --> 01:29:53,852
all: ♪ Hey, baby, ooh, ah ♪

1646
01:29:53,894 --> 01:29:55,687
♪ I want to know ♪

1647
01:29:59,900 --> 01:30:02,693
[cheers and applause]

1648
01:30:06,406 --> 01:30:08,700
- It's funny, people ask me
all the time,

1649
01:30:08,742 --> 01:30:13,830
"Are you angry that you
weren't diagnosed early on

1650
01:30:13,871 --> 01:30:16,750
and you could have
avoided all of this?"

1651
01:30:18,710 --> 01:30:22,880
And I tell them
I'm actually not angry.

1652
01:30:28,344 --> 01:30:31,974
I would certainly never wish
what I went through on anyone.

1653
01:30:32,014 --> 01:30:33,517
But, you know, in some sense,

1654
01:30:33,559 --> 01:30:37,103
I feel like it was part
of the bigger plan for me.

1655
01:30:39,940 --> 01:30:43,777
Wasn't always pleasant,
but you know what?

1656
01:30:43,818 --> 01:30:47,155
There's been so many good things
about what I've gone through.

1657
01:30:54,580 --> 01:30:58,375
Whether I live five hours,
five days,

1658
01:30:58,416 --> 01:31:00,835
50 months, or 50 years,

1659
01:31:00,878 --> 01:31:03,213
it's got to be,
like, a fulfilling life.

1660
01:31:04,590 --> 01:31:10,262
I mean, I can't look back
and regret not having done things.

1661
01:31:10,304 --> 01:31:13,264
[atmospheric music]

1662
01:31:13,307 --> 01:31:19,228
♪ ♪

1663
01:31:25,943 --> 01:31:29,156
Happy belated New Year.

1664
01:31:29,198 --> 01:31:30,949
People have asked me
if everything's okay.

1665
01:31:30,991 --> 01:31:32,534
They hadn't heard from me
in a while.

1666
01:31:32,576 --> 01:31:35,996
And I just wanted
to send this message.

1667
01:31:36,038 --> 01:31:38,165
You know, I may look tired.
I am pretty tired.

1668
01:31:38,207 --> 01:31:43,295
I think I need to conserve
my energy for the push ahead.

1669
01:31:45,672 --> 01:31:48,175
I made a promise to all of you

1670
01:31:48,217 --> 01:31:51,929
that I would continue
to work tirelessly.

1671
01:31:51,969 --> 01:31:54,473
I will continue to honor
that promise,

1672
01:31:54,514 --> 01:31:56,558
and my thoughts and prayers
are with all of you.

1673
01:31:56,600 --> 01:31:58,227
So take care.

1674
01:31:58,268 --> 01:32:01,230
[soft dramatic music]

1675
01:32:01,271 --> 01:32:08,278
♪ ♪

1676
01:32:25,212 --> 01:32:28,257
I've taken care of people
at the prime of their lives,

1677
01:32:28,298 --> 01:32:30,425
great jobs,
beautiful families,

1678
01:32:30,467 --> 01:32:32,052
devastating cancers.

1679
01:32:32,094 --> 01:32:34,429
Like, "Why did this
happen to me?"

1680
01:32:34,471 --> 01:32:36,223
I mean,
that's the universal question,

1681
01:32:36,264 --> 01:32:38,100
"Why did this happen to me?"

1682
01:32:40,102 --> 01:32:43,313
My grandmother used to say to me,
"Why not you?

1683
01:32:43,355 --> 01:32:45,023
Why shouldn't it happen
to you?"

1684
01:32:48,110 --> 01:32:51,362
The question is not, "Why?"
but, "How do you move beyond it?"

1685
01:33:22,644 --> 01:33:26,356
[hopeful music]

1686
01:33:26,398 --> 01:33:28,442
- I think about the people
who have died

1687
01:33:28,483 --> 01:33:30,235
and that are dying

1688
01:33:30,277 --> 01:33:34,114
and the people who are alone,
and I feel very guilty,

1689
01:33:34,156 --> 01:33:36,325
because I'm getting
all this help,

1690
01:33:36,366 --> 01:33:38,243
and these people
need help too.

1691
01:33:39,702 --> 01:33:41,830
I feel like I'm obligated
to do this

1692
01:33:41,871 --> 01:33:45,375
and that this needs to happen
in order for there to be a change.

1693
01:33:46,919 --> 01:33:49,546
I was a different person
before Lyme,

1694
01:33:49,588 --> 01:33:51,715
a normal girl.

1695
01:33:51,757 --> 01:33:54,425
Now is the time for action.

1696
01:33:54,468 --> 01:33:57,387
We must stand together as one.

1697
01:33:57,429 --> 01:33:59,889
For the people
suffering right now,

1698
01:33:59,932 --> 01:34:02,643
let us be their voice.

1699
01:34:02,684 --> 01:34:04,978
For the people we have lost,

1700
01:34:05,020 --> 01:34:08,232
let us grieve them
and fight in their memory.

1701
01:34:08,273 --> 01:34:10,234
I'm determined
to bring about change,

1702
01:34:10,275 --> 01:34:13,445
and I trust that together,
we can bring hope

1703
01:34:13,487 --> 01:34:16,031
to those who have forgotten
the meaning of the word.

1704
01:34:19,243 --> 01:34:22,037
My mind is there,
but my body isn't yet.

1705
01:34:22,079 --> 01:34:24,414
But I'm determined,
even if I am in a wheelchair

1706
01:34:24,456 --> 01:34:27,334
and I am sick,

1707
01:34:27,376 --> 01:34:29,837
I want to help more people.

1708
01:34:45,143 --> 01:34:46,687
- You can't give up.

1709
01:34:46,728 --> 01:34:48,897
Because if it was you,
your family,

1710
01:34:48,939 --> 01:34:52,901
you can't just turn people away
and say there's no hope.

1711
01:34:52,943 --> 01:34:54,820
People are contacting me
all the time,

1712
01:34:54,862 --> 01:34:56,822
from all over the world.

1713
01:34:58,657 --> 01:35:00,157
I need to share
this information

1714
01:35:00,200 --> 01:35:02,244
because this
is a worldwide epidemic.

1715
01:35:03,327 --> 01:35:05,664
- The whole world
is in disastrous situation

1716
01:35:05,706 --> 01:35:08,709
because of the position

1717
01:35:08,750 --> 01:35:10,460
of a small group of experts

1718
01:35:10,502 --> 01:35:12,004
at the IDSA

1719
01:35:12,045 --> 01:35:13,255
in the United States
of America,

1720
01:35:13,297 --> 01:35:16,175
because they made
recommendations,

1721
01:35:16,216 --> 01:35:19,594
and it was imposed
to the whole world.

1722
01:35:21,889 --> 01:35:27,186
- So here we are in the midst
of a huge epidemic.

1723
01:35:27,227 --> 01:35:29,688
We've all come
to an understanding

1724
01:35:29,730 --> 01:35:33,066
of what this can mean
in our everyday lives.

1725
01:35:34,318 --> 01:35:37,029
In the case of COVID,
we are accepting

1726
01:35:37,070 --> 01:35:40,157
that there is something
called long-haul.

1727
01:35:40,199 --> 01:35:44,494
The difference is,
they are being taken seriously.

1728
01:35:44,536 --> 01:35:48,457
But Lyme disease has been
this quiet epidemic

1729
01:35:48,498 --> 01:35:50,334
for decades.

1730
01:35:52,710 --> 01:35:57,382
We all have to realize
that we're at risk.

1731
01:35:57,424 --> 01:36:02,387
This is a growing
and common threat.

1732
01:36:03,764 --> 01:36:05,599
And yet for too long,

1733
01:36:05,641 --> 01:36:07,809
the problem
has been minimized.

1734
01:36:09,561 --> 01:36:15,651
Settling this debate is going
to require new researchers,

1735
01:36:15,692 --> 01:36:17,361
new science.

1736
01:36:18,820 --> 01:36:22,115
We need new ideas
about Lyme disease

1737
01:36:22,157 --> 01:36:24,493
and people who are willing...

1738
01:36:26,870 --> 01:36:29,456
To challenge the old guard.

1739
01:37:32,436 --> 01:37:35,272
- Right by my tweezer,
that's a larva,

1740
01:37:35,314 --> 01:37:37,191
and it's fully engorged.

1741
01:37:37,232 --> 01:37:40,027
It's probably going
to drop off today.

1742
01:37:40,068 --> 01:37:42,237
The fully engorged larvae
look like poppy seeds.

1743
01:37:42,279 --> 01:37:44,781
One larva, right ear.
One larva, left ear.

1744
01:37:57,878 --> 01:38:01,048
- We have an early warning
in your health this morning.

1745
01:38:01,089 --> 01:38:06,469
- Scientists predict this could be
the worst Lyme disease season in years.