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[ambient nature sounds]

[serene music]

♪ ♪

[bird squawking]

[bird squawking]

[birds squawking]

- [blowing softly]

[blows]

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

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

There's another one
just loose.

And just dropped.

[chuckles]

We may not see that one again.

This is really quite unusual.

Two of 'em just fell off here.

They're all apparently
completely engorged,

and ready just to fall off.

[music builds]

- Here's one.
Here's one.

Here.

Here. Here.

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

- We have this project

where we're testing ticks

from all over the country.

These are ticks that are coming
into contact with people.

- Texas, New York,

Virginia, Florida,
Pennsylvania, Missouri,

Oklahoma, Wyoming, California,

Georgia, Ohio,
Indiana, Nevada,

Alabama, North Carolina.

- Ticks are not just
in the Northeast,

where we classically
think they are.

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

And that means that
these things are everywhere.

[suspenseful music]

♪ ♪

- There is an epidemic

disease spreading across

the United States.

It's called Lyme disease.

It's serious and can be fatal.

- As it digs in
for a meal of blood,

it can inject
the germ it carries

right into your bloodstream.

Shaped like a corkscrew
and called a spirochete,

first cousin of the spirochete
that causes syphilis,

and equally elusive.

- The disease causes symptoms
that look like dementia,

Alzheimer's disease,

multiple sclerosis, ALS.

- Meanwhile, debate is growing
over the proper treatment

for Lyme disease.

all: Lyme is spreading!

- Most cases respond

to treatment with antibiotics,

but others do not.

Whether they suffer from
a chronic form of the disease

is a hotly contested debate
among doctors,

patients,
and insurance companies.

- There is a public perception
that Lyme disease

can routinely present
in a myriad of ways.

That is incorrect.

- Right now,
my hands are burning.

My feet are burning.

Every joint in my body

hurts all day.

That's Lyme disease.

- You brought a tick.

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

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

- 37 states.
- 43 states.

- 45 states.

- And it may be as close
as your backyard.

[suspenseful music]

♪ ♪

[ambient noises]

- [sighs]

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

Because, uh, you know,

I guess it's
about starting something

that I was never able
to finish.

And it kind of just reminds me

of when life used
to be normal.

[soft dramatic music]

♪ ♪

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

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

[kids vocalizing]

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

and just turns everything
upside down.

Tons of medications.

These are pill organizers.

Oxygen.

Empty meds.

Those are all full.

This is what life became.

I--I would let it all burn

just to see Julia walk.

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

- As a kid, I was very eager.

I was very active.

I loved to dance.

And I used to love
to ride my bike.

- Feeling good?
- Fine.

But those things about me
started to change.

Even though I knew
something was wrong,

I never imagined
it would be this.

Like a week before I started

to get seriously ill,

well, I started
to notice it was hard

to get out of bed
in the morning.

And you know,
everybody has those days

where they can't imagine
waking up.

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

an hour to get out of bed.

The second week
that I was sick,

I was just sitting in class,

and my legs went numb.

- The school called me,
and they said,

"Something is seriously wrong
with Julia.

You need to get here
right away."

When I got there,

I found Julia
in the nurse's office,

and she was just lifeless

across two chairs.

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

What's the matter?
What happened?"

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

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

and I can't feel my legs."

So I took her straight
to the hospital.

Julia was tested
for everything several times,

not just once, and everything
comes back negative.

It was a very confusing time.

I felt like Julia was dying.

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

Julia's doctor would come
to me and say,

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

So I would give her a list,

and she would run tests
for everything I gave her.

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

and Lyme disease comes up.

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

And then I started
researching the area

that we vacationed in,

the area around our house.

There's Lyme disease
in these areas.

The story is told very clearly

just looking
at her medical records.

You know,
Julia got bit by a tick

when she was nine years old.

She went undiagnosed
for the next two years.

I felt like somebody
threw a bucket

of ice water over my head.

I called Josephine.
I called the kids.

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

She's got Lyme."

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

She went from being this
wonderful, supporting doctor,

willing to try anything,

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

[inquisitive music]

♪ ♪

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

like "Lyme disease"
was a bad word.

They saw nothing wrong
in the laboratory test,

and they figured
she must be faking it.

- I remember just hearing that
and, like,

I--I couldn't believe it.

Like, I'm having
real symptoms.

I was comatose.
I was losing my hair.

- Fever, flaccid paralysis.

How could she be faking fever?

The color blue.
She was blue in color.

The doctor insisted that this
had to be conversion syndrome.

I felt like we were
being attacked.

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

- [sniffles]

She was only 11 years old.

You know, and she had a--

she had to put up
an argument like that.

The first thing I think of is,

how many people
go through this

and then just go home
and suffer in silence?

[birds singing]

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

as an investigative reporter

who wanted to find out

what was going on.

I went into it intending

to look at the trend
in Lyme disease cases.

Was government doing enough
to control ticks?

I also wanted to know
why I could get a vaccine

for my dog but there was none

for my children
and grandchildren.

[tense music]

♪ ♪

The main question is whether
Lyme disease is chronic.

Does it respond
to the short courses

of antibiotics
that are recommended?

By and large, a small group

of researchers
and government officials

basically say short courses
of antibiotics cure.

There was another side,
though.

I found patients who had been

to 10, 15, 20 doctors,

and they still had lingering,
serious symptoms,

and were tired
of being ignored.

What I found
after two or three stories

was that I had waded into one
of the most controversial,

divisive, and vicious medical
debates in medicine today.

[sweeping music]

♪ ♪

- There is a medical detection
story in the making.

It deals with arthritis
and the possibility

that a type of arthritis
may have been uncovered

which is caused
by an insect bite.

The outbreak
of arthritis is centered

in Lyme, Connecticut,
a small town located

on the Connecticut River.

In the past three years,
there have been 51

reported cases
of the mysterious arthritis.

Several adults
have been treated,

but most of the victims
are children.

- So in the early 1970s,

Allen Steere is
a newly minted rheumatologist

who has also studied
epidemiology, namely,

"How do we define
and count diseases?"

He's the guy from Yale

who answers the call
of a young mother

who reports that two
of her children

have been diagnosed
with juvenile arthritis,

as have a number of others.

- Let me ask you, Dr. Steere,
how did you get on the trail

of this particular form
of arthritis?

- Frank, a number of parents
in this community

were concerned
that so many children

seemed to have arthritis.

This is where the medical
detective story comes in.

Actually, like a detective,

you try to determine
where the people were

when they got their illness,
when it occurred,

where they were
in relation to one another.

- In 1977,
he publishes a paper

on an epidemic of arthritis.

Dr. Steere found that 25%

of that original Lyme disease group
had something of a rash,

a bull's-eye rash.

And he also links this illness

to the bite of a tick.

But as time went on,
his focus changed,

and Dr. Steere was recognized
in the Lyme community

as someone
who was not their ally.

all: Lyme is spreading!
Lyme is spreading!

- All we want
is long-term treatment.

- If a patient thinks
that they have Lyme disease,

are being treated
with antibiotic therapy,

and are not responding,
the most common reason

is that they actually have
another illness.

[soft dramatic music]

- As Lyme disease evolved,

doctors needed guidance.

So a group got together,

called the Infectious Diseases
Society of America,

and wrote the first guidelines
to treat Lyme disease,

where they staked their claim

that this disease
was not chronic.

♪ ♪

- This is a fairly benign
disease if treated early.

- It has, on occasion,
been life-disruptive,

but I don't want
to overemphasize that fact.

- As hard as the IDSA tried

to solidify treatment
of Lyme disease

in one way only,

there were cracks
that emerged over time.

And these cracks, if you will,

were, you know, a doctor here,
a doctor there,

who discovered

following the guidelines
didn't always work.

[tense music]

- I decided to return
to Westchester County

around 1985.

Unbeknownst to me,
Westchester at that time

was beginning
to be a burgeoning epidemic.

I knew virtually nothing

about Lyme disease

when I went into practice.

I knew the name. That's about it.

What I was observing was,
like, incredible.

People get sick.
You treat them.

They get better.

And then the same symptoms
would start creeping back.

How can a organism survive
these antibiotics?

[phone ringing]

- These were really
in the early days,

when we were all looking
for answers.

I was having a lot of patients

coming into my office

with bull's-eye rashes,

and about 80% would get better
with standard antibiotics,

but 20% would not.

So I would look
at the guidelines,

but unfortunately,
those guidelines were not

specific enough
to deal with the complexity

of what I was seeing.

- So when I first was learning
about Lyme disease,

I was really interested
in an article

that came out in 1989

written by a neurologist,
Andrew Pachner.

His article was called
"Lyme disease, the New 'Great Imitator.'"

And in that article,
he presented six cases

that were fascinating.

There was one case
of an individual

who had aggression outbursts.

A young child, and when he was
treated, the OCD went away.

Here we have
an infectious illness

that's causing
psychiatric problems.

So why was Lyme disease

called
"the new great imitator?"

Because the first
great imitator was syphilis.

Syphilis was caused
by a spiral-shaped organism

called a treponeme,

and Lyme disease is caused
by a spiral-shaped organism.

Syphilis caused a huge variety
of manifestations.

So it mimicked other diseases.

- Lyme disease may
be the great masquerader

of the 1980s and '90s

in that it can do
almost anything.

- The Lyme disease spirochete
is shaped like a corkscrew,

so it drills
through your joint cartilage.

It quickly leaves
the bloodstream.

It goes to organs.

It goes to the heart
and the brain.

- The Lyme disease bacteria,
Borrelia burgdorferi,

is definitely one
of the smartest bacteria

on the planet.

This organism knows
how to change forms.

It knows how to hide.

And the way it evades
the immune system--

Lyme is more difficult
to find on the blood tests.

- And many of us clinicians
were observing that.

Patients that we strongly
believed had Lyme disease,

their standard tests
for Lyme disease were negative.

And as a result, it is easy
for people to honestly,

you know, confuse Lyme
for other conditions.

- The most common misdiagnoses
that I see in my practice

are people who've been diagnosed
with chronic fatigue syndrome,

fibromyalgia,
rheumatoid arthritis, lupus,

multiple sclerosis
is a big one,

patients who have dementia,
Alzheimer's.

Lyme can imitate
all of these different diseases.

So it's a very,
very complex organism,

and you really have
to understand the biology

to understand how to treat
these patients effectively.

- We're now up
to almost 500,000 cases

of Lyme disease
in America every year.

There are more cases
of Lyme disease

than HIV
and breast cancer combined.

Of those 500,000,

about 10% to 20% will stay sick

for some period of time.

We now believe
that something on the order

of 2 million people

suffer the aftereffects
of Lyme disease

in the United States.

So 50 years later,
here we are,

and we still haven't
answered many

of the most urgent
and basic questions.

"Chronic Lyme disease"
is a rejected term

in American medicine.

The question is, why?

[ambient nature sounds]

- Home, sweet home
away from home.

And it is...

time to do the ritual ironing.

I feel a little guilty
staying in this place.

Usually, like,
an Embassy Suites person.

I literally just came
from Carlisle, Pennsylvania,

which is, like,
an incredibly endemic area.

And just
to hear the stories there,

with whole towns
and neighborhoods being infected.

The mere fact
that I validate their disease,

you know, and recognize
it's not all in their head,

that they're not just
fabricating everything--

I think that's so important
for people

to have maybe
somebody like me,

who's in the medical
profession, saying,

"I hear you."
You know, "I get it."

- It is my honor to introduce
tonight's keynote speaker,

Dr. Neil Spector.

Dr. Spector is one of the top

breast cancer scientists
in the country.

The Lyme community
is so incredibly fortunate

to have one of the smartest
minds in research,

who is working
towards better treatment

and a cure
for tick-borne illnesses.

- Okay. Lyme disease.

It's everywhere, right?

This isn't just a problem
in Connecticut,

New York, New Jersey.

It's all over the place.

And it's only getting worse.

We've got people
at the prime of their lives

who are taken out of society,

and yet we have no clue
what's going on with them.

I'm coming up on ten years
of a heart transplant recipient.

That was an evening that I'll
never forget, Friday evening.

Surgeon walked into my room,
and he said to me,

"You'll be dead by Monday
without a heart transplant."

[hopeful music]

You can do all
the right things in the world

and get bit by a tick,

and it'll change
your world forever.

[birds singing]

I'd just moved here
to North Carolina.

It was 1998.

Just started a new job.

Our daughter
was a few weeks old.

I had always been
unbelievably healthy.

I mean, I had ran marathons.

I used to run ten miles a day,
six days a week.

So it was a very foreign
experience for me

to go from taking care
of cancer patients

to barely being able
to walk ten yards

without having to stop.

We went through
autoimmune diseases, lupus.

All the tests were negative.

I completely fell
through the cracks

of the medical system.

And it wasn't until four years
into my illness

that I developed arthritis.

And so I started
piecing it together and said,

you know, "I'm convinced
I have Lyme disease."

I got a call in my office,

and the cardiologist said
to me,

"Is there a chair nearby?"

You know, "You've got
a severely damaged heart.

You need to be evaluated
for a heart transplant."

I'm not sure
how I drove home.

Just completely in tears,

thinking, "This is it."

Not gonna live
beyond a certain age.

Never gonna see
my daughter grow older.

I'm not gonna see
any of the milestones.

And then I just realized,
you know,

not gonna just roll over
and let that be the answer.

I'm gonna do
whatever it takes.

"Few minutes after
telephone call

that 'your new heart
has been found.'"

Yep.
Giving the old V sign.

- Moment of victory.

[tense music]

♪ ♪

But then you sit
with all those other feelings

of the person
who lost their life.

That's a whole other side
of things too,

the sitting with "What is
their family going through?"

Those were hard emotions
to sort out.

- They were, yeah.
They're still difficult.

- They are still difficult.

- I think about that a lot.

You know, why me?

Sometimes you feel
the pressure

of having to live your life

in an extraordinary way
for those people

who unfortunately
didn't have the opportunity.

You know, with all these unknowns,
there is one known,

and that's that people
are falling through the cracks

of the medical system.

The burden should not be
on people who are sick

to prove that they're sick.

It should be on us,
as medical professionals,

to better understand what's
going on and to help them.

[TV drones in background]

- It was a very hard time
for all of us.

We felt we were losing Julia.

I had nobody
to take care of Julia.

[soft dramatic music]

So me and my wife
had to make a decision.

One of us had to stay home.

- My dad decided that he
wasn't gonna go back to work.

And I remember it
breaking my heart,

because I was
ruining everybody's life,

and I couldn't control it,
couldn't do anything about it.

- We were struggling.
I was without salary.

It felt like
an unwinnable battle.

And then something
really extraordinary happened.

♪ ♪

- This is the plane
that is bringing Pope Francis

here to New York City
for the very first time.

Tremendous sense
of excitement.

And here he is.

- Holy Father!

- He steps out of the plane,
and it's almost like he makes,

like,
a beeline straight to me.

- Holy Father.

- And, Julia, how come
you're in the wheelchair?

I understand you're fighting
a tough fight, right?

- Well, I've been undiagnosed
for four months,

and I have a clinical diagnosis
of Lyme disease.

- And why did you
come here today?

- I came here 'cause I wanted
to meet the pope,

'cause I believe in a miracle.

- You believe in a miracle.

- She just garnered
a lot of media attention.

We started getting phone calls
from every network.

- This was
the strangest story.

A vibrant,
healthy 12-year-old girl.

- You know, suddenly,
in, like, a second,

my life just changed.

- The mothers at Julia's school,

they started
this GoFundMe page

that was very successful.

- We started getting bombarded
with letters

from all different people
who had Lyme disease

around the world.

- We went from being alone

to being, like, exposed.

And, you know,
we didn't realize it then,

but we were in the middle
of a tremendous controversy.

- Convinced
that Julia had chronic Lyme,

her father decided
to fight back,

only to find himself
right in the middle

of a mind-boggling medical war.

- There's a lot
of misinformation out there

about Lyme disease.

- Wormser was a lead author

of Lyme treatment guidelines
followed by the CDC.

Recently, he equated some

of the chronic Lyme conversation
to fake news.

He never treated Julia,

but he influenced many
who did.

- I'll never forget the day
we got the phone call.

I went outside
to have a cigarette,

and my phone rang.

And I pick up the phone,
and it's somebody from the CDC.

Not too long after that,

Julia was interviewed
by Fox 5,

and I excitedly shared
this information

with a list of my contacts.

Somehow, my email was sent
to Dr. Phillip Baker.

Here's another man
who has never met us.

He has never had
the opportunity

to look
at Julia's medical records.

And he writes, "Since the results
of laboratory tests

"for the diagnosis
of Lyme disease were negative,

"were other possibilities considered
to explain such symptoms?

"If not, wasn't this child
denied the opportunity

"to get the medical treatment
she deserved

"by obsessively focusing
on Lyme disease?

"Perhaps this is
the most tragic outcome

of this sad story."

Julia has been tested
for everything under the Sun,

several times.

I guess they have
their own motives

for being interested
in Julia's story.

But I can't imagine
any medical professional

who holds a high position
in the CDC calling a patient

to deter them from treatment
of any disease.

How does that make sense?

[ambient nature sounds]

- Investigate the CDC!
Investigate Lyme disease!

Investigate the CDC!
Investigate Lyme disease!

- Doctors need
to realize it's everywhere.

I mean,
birds fly, animals roam,

people travel
and pack their bags

with clothing that they've
been out in the woods with.

- Every doctor I've been to

is saying, like,
"We don't treat Lyme," or...

- Yeah.
- "It's all in your head…"

- Yeah.
- Or they'll see the strands.

"Oh, is not--
is not the CDC positive?"

- You see, that's--that's--
- "So you're fine."

- Investigate the CDC!
Investigate Lyme disease!

- We understand that patients
who don't feel well

are desperate
and seeking answers.

But we're concerned
that some of them

fall into a trap
of being treated for things

that ultimately
are not helping them.

[tense music]

- There are very powerful
forces standing in the way

of progressive attitudes
towards Lyme,

most notably
Centers for Disease Control

because they are the leader
not just for this country

but for all of the countries
in the world.

And their intransigence
has created just--

just a world of problems.

[music building]

In the early '90s,

I was actually invited out
to CDC Fort Collins.

You know, I gave a talk there.

And afterwards,
we all went out to ski.

I've had very good relations
with many of the folks

at CDC over many years.

It's not the people.

It's the policies.

And the question is,
who sets CDC policies, and why?

♪ ♪

- One of my major stories
for the "Poughkeepsie Journal"

was when I obtained
a sheaf of emails,

2,500 pages, actually.

These emails were between
the major players in Lyme disease

as well as officials
in the CDC and NIH.

The emails belied a sort of
"us against them" mentality.

In one email,
this researcher from Yale

by the name of Durland Fish
was commenting

how Lyme disease groups
were organizing.

They were holding protests.

What he said was,
"This battle cannot be won

"on a scientific front.

"We need to mount
a sociopolitical offensive.

"But we are outnumbered
and outgunned.

We need reinforcements
from outside our field."

There was another
very telling email.

In 2007, Phil Baker was leaving

the National Institutes of Health.

He was the person
who decided on grants

for Lyme disease research.

And what he said was,
"I'll certainly miss

"all of you people--
the scientists--

but not the Lyme loonies."

When I asked him
for a comment,

he said, "That might be
too kind a description."

And one more, from an official
at the National Institutes of Health:

"What we have here is a war,

"an insurgency against
evidence-based medicine.

It's time to start
shooting back."

[birds singing]

- It's such a bad article,
the computer doesn't even

want to open it up.

[laughs]

That happens sometimes.

"Antiscience."
Huh.

Who, like,
publishes this stuff?

[inquisitive music]

♪ ♪

So one of the problems
with these antiscience articles--

they sort of make
these broad claims.

And then they make it,
like, people like me,

who would question
the testing, the treatment,

and try to lump me into people
who believe, you know,

that the Moon doesn't exist
and the world is flat.

And they're deflecting
the real issues.

What kind of a disease is it
that you're ostracized

by the very community
that should be helping you?

I don't think you have
to have an MD to think

there's something wrong here.

What is it that these people
have in common?

And you could either say
they all have in common

that they're crazy,

or you could say there's,
like, something out there

that's causing this.

[bell tolling]

This may be some
of the first Lyme science

being done on this campus.

And in fact,
some of these projects

are really the first
to be done in this country.

These are ideas
that I've been working on

and my colleagues
have been working on

in the cancer field
for, you know, 20-plus years,

and now we're finally gonna be
applying this to Lyme disease.

What if I told you
that we could image

Lyme disease in your body?

[machine whirring]

[inquisitive music]

♪ ♪

Can you imagine going
to a doctor and say,

"Wow, you've got pain
in your left knee.

"That's kind of interesting,
because this scan

is lighting up for Borrelia
in your left knee."

So we could actually show,
on a noninvasive scan,

that you've got the bugs
in your body,

and you've got 'em
where your symptoms are.

We don't have
anything like this.

It's all guesswork.

I mean,
just like it is for cancer,

this would be revolutionary

in the way we diagnose

and then the way we treat.

Since my transplant,
I realized that this field

is sorely lacking,
bad diagnostics.

We need better therapies.
All of you know that.

What I'm saying is that we can
and we will do better.

I'm gonna make you
that promise right here.

The timeline that I promised
to deliver is three years.

I mean, that's,
like, unheard of.

But that's the pressure
I'm putting

on myself and everyone else.

That's, like, a heavy burden,
when I know, like,

what the desperation is,
when people are like,

"Well, Neil, you're it.
You got to deliver for us."

So, um,

I'm gonna deliver for people.

- After the pope, Julia was
taking a turn for the worse.

I knew that I had
to find somebody

that was willing to treat Julia
for Lyme disease.

And I started to realize
that there's such a thing

called Lyme-literate doctors.

Everyone I would call
would have a waiting list

of six to eight months.

You know, all these doctors
are not covered

by insurance companies.

It all seemed
a little sketchy.

- Over here.

Take a nice, deep breath.

Good.

Let me see with your reflexes.

Yeah, they're cold.

Now, if you start
to feel really, really dizzy

with this,
I will sit you down.

I just want to see how fast
your heart rate starts to go up.

- Okay, go ahead.
- All right.

Okay.

I'll try and do this for at least,
if you can, just for one minute,

so I can get a sense
what the pulse rate's running.

- [inaudible]
- Is it already difficult?

- Yeah, yeah.
Down, down, down, down.

- If you have to sit down,
it's okay.

- [inaudible]
- Dad, Dad, Dad.

Just down.
- [inaudible]

- Okay, go ahead. Go ahead.
- Down. Down.

- Go down.

- Let me just
check the pulse now.

[tense music]

I've never seen anyone
have a heart rate of 250.

- Mm-hmm.
- That's--that's off the wall.

When I was looking for answers
for Lyme patients,

I discovered
that there were multiple reasons

why people stayed ill.

It was like going
to a doctor's office

with 16 nails in your foot,
saying you have foot pain.

And the doctor
pulls out one nail

and says,
"Come back in a month."

You still have 15 nails
in your foot.

You're gonna have pain.

Some of it is that the Lyme
organism is persisting,

but part of it
is also other infections.

Right now, there are
at least 18 different

tick-borne diseases
that can be transmitted

by the bite of a tick.

You know, the most common
coinfections that we see

that make people ill is Lyme,
babesia, and bartonella. Right?

And when you
put them all together,

the people get
much, much sicker.

- The first appointment
with Dr. Horowitz,

when I realized that they
didn't accept insurance,

you know, that was a red flag.

I realize now
that it's not a red flag.

That first visit,
I think it was anywhere

between three and four hours.

And so much was revealed to me
about Julia's situation.

- I was in insurance companies.

I accepted Medicare
for at least 25 years.

There just got to be a point

when the insurance companies
dropped me.

There was just no way
to continue in that way,

and I had to go
outside the system.

[tense music]

I lost about 2,000 patients
within a period of six months

because I was
spending too much

of the insurance
company's money

for a disease
that didn't exist.

It was like,
hear no evil, see no evil.

They just didn't want
to know about it.

♪ ♪

- Lyme disease is the first
disease of epidemic proportion

that came to light
hand in hand

with the development
of managed care.

- When HMO medicine
started taking effect

in the 1980s and '90s,

it was easy
to practice medicine

for people
that had straight diseases

like high blood pressure,
high cholesterol, diabetes.

I could get them in and out
in 10 to 15 minutes.

That was simple.

The problem with Lyme disease is,
they have up to 38 different symptoms.

You can't get that done
in 12 to 15 minutes.

- So here's a disease that's
affecting a lot of people,

can be costly, and there's
been a very active role

of the insurers, their agents,
to define

not Lyme disease away
but chronic Lyme disease away.

[static buzzes]

I want to introduce everybody.
This is Vicki Logan.

And it is June 22, 2001.

You are a former
pediatric ICU nurse, correct?

So you were
a highly skilled professional.

- And highly educated.

[tense music]

Vicki Logan was a fairly early
patient that I saw,

around '88 or '89.

She presented a mystery
that hadn't been solved.

When she came to me, I studied her
very carefully for a year,

did all kinds of testing,

everything that I knew
how to do,

not just for Lyme disease
but for other,

you know, conditions.

I knew that she had grown up
in Westchester County,

and I knew that it was
a very tick-infested area.

Realizing that she was sick
and getting worse,

I felt that it was appropriate
to treat her

for the possibility
that she might have Lyme.

♪ ♪

About a year later,
she begged me for a spinal tap.

I put a couple
of ccs of spinal fluid

in a special culture
and shipped it off to the CDC.

Several weeks later, I got
an excited telephone call

from David Dennis
from CDC Fort Collins

to let me know that spirochetes

were growing
out of her spinal fluid.

He was quite excited about it

and actually
rather incredulous,

because he knew that she had
already been treated

with a regimen
that was supposed

to eradicate Lyme disease.

And at that point,
then I really knew what she had.

And I treated you
for 109 continuous days,

and you progressively
improved.

But at a certain point,

policies changed
at Empire Blue Cross Blue Shield

that made it almost impossible
for people like Vicki

to receive the treatment
that she needed.

There would be
no reimbursement for--

for that kind of care.

In the late 1990s,

Vicki and about a dozen
other patients filed a lawsuit

against Empire Blue Cross Blue Shield.

The litigating attorney was
a gentleman named Ira Maurer.

And he brought suit
against Empire

on behalf of these patients.

- When you've got
lots of disagreement

as to what
is appropriate diagnosis

and treatment
of Lyme disease,

it makes it very hard
for a Lyme disease patient

and a lawyer like myself
to go in there and challenge

when an insurance company
refuses to pay

for very expensive intravenous
antibiotic treatment.

- One of the most revealing

documents in the Lyme annals

emerged from the case
of Vicki Logan.

One of the witnesses
that came on to give testimony

was Richard Sanchez,

who worked
for the insurance company.

He really detailed,
in a disturbing way,

the way in which
insurance companies

red-flagged Lyme disease
and put up roadblocks.

- They raised the bar,
made it harder for people

to qualify for the expensive
IV treatment,

knowing that there were
some people

who still would benefit from it
and wouldn't qualify.

And he considered those people
to be the "low-hanging fruit,"

the easy money to make
for the insurance company.

- In the meantime,
some of the same people who created

the Infectious Diseases Society of America
guidelines

were consulting
with the insurers

on their internal Lyme disease
guidelines policy.

- So they created the guidelines
on the one hand,

and then on the other hand,
they're getting, you know,

$600 an hour in the 1990s
to deny these cases.

Leonard Sigal said his fee
in 1996 was $560 an hour,

and he even quipped
that it was quite helpful

in meeting college tuition for his kids.

- There's good proof that one
can do significant damage

to patients by putting them
on long-term intravenous antibiotics.

- If one side
in this controversy

writes the protocol
and says no one may be treated

beyond 28 days
with intravenous antibiotics,

that's going to be disastrous
for patients with Lyme disease.

- There was a move
by some of the insiders

of the Infectious Diseases Society
to issue guidelines.

I was part
of the original guidelines.

I tried to advise
that we weren't ready

to issue guidelines
about long-term disease.

We didn't have the information.

You have to be really careful
about issuing guidelines,

'cause they get abused.

The overseers said,
"We need to put out

these Lyme disease guidelines."

And there was some urgency
to do something.

I mean, there's
Lyme disease out there.

I said,
"Well, we're not ready,

but I could
provide the language."

"There are patients
who have ongoing symptoms

"for which
the causation is unknown,

"and it's to be left to the judgment
of the physician

as to how to manage this."

But that went too far
for them.

And they removed my draft
and put in their own draft.

It's like chronic Lyme disease
doesn't exist.

That was Dr. Wormser.

He issued a final declaration
as far as,

"You can sign it,
but we're not gonna

have a minority report,"
if you will.

And so you're stuck.

How are you gonna
undo something?

Who's gonna back off?

- Unfortunately,
I've seen people

whose lives were destroyed

because they went years
and years and years

with no treatment
or inadequate treatment.

And it ate away
at their bodies

and their brains,

at their organs,
until they succumbed.

So it's a very complex situation,

and the insurance companies
have made use

of that complexity
to their economic advantage.

- In my opinion, no way
was her care experimental.

Her care was absolutely
medically necessary.

And the necessity of it
was demonstrated--

whenever she stopped
being treated,

she would deteriorate
in objectively measurable ways,

and when she got treated,
she would improve

in objectively measurable ways.

Vicki went for a number of years

without the treatment
that she needed,

and during that time,
her condition deteriorated.

One of her last stays
at Northern Westchester,

I undertook a long interview
with her.

Vicki, you want to take
a couple of minutes

to say anything
from your own heart?

- She experienced a series
of grand mal seizures.

Her friend Rosalyn
said that Vicki, you know,

mouthed to her, "I love you."

And within a few days,
you know,

she was dead.

Vicki's case
was reported in the--

in the "New York Times'"
Science Times,

I think in August of 1993.

I fully expected that,
you know,

that would be a turning point.

And it's just incredible to me
that here we are,

you know,
pushing 30 years later,

and there's still
so much controversy

and so much difficulty
for the patients.

Let me tell you,
the deck was stacked against,

you know, Vicki
and patients like her.

[video static crescendos]

- I need you say,
"When I stand up,

"although maybe I'm weak
and I can't walk,

but I'm not gonna pass out."

And that's
when I'm gonna know.

And that's the thing you have
to understand is,

till the blood pressure
is controlled,

I can't do the physical therapy
for the legs.

- Right, right.
- Right?

And that's gonna be essential
to getting this whole thing done.

- Absolutely.
- So that's why I'm trying

to go as fast as I can
but in a safe manner.

- Right, right, right, right.

- Julia, if you could put your arm out
a little bit for me...

- Okay.
[whimpers]

Dad, I don't wanna.
- I know.

Let him do the blood pressure.

- [whines]

- Okay, you can
put her back now.

- Wait, stay here.

- I'm staying. I'm staying.

- Let me just check her pulse.

- She's at 140 beats
per minute.

- [groans]

[tense music]

- When you feel
like you're dying

and there's
nothing else to try,

you reach
for anything you can.

You have to take that risk.

- Even if God came down
and told me,

"You're doing the right thing,"
I'd be scared.

I'm scared till this day,
giving her any medication.

The hospitals wanted us

to go into an in-patient
rehabilitation center

to get physical therapy
and psychiatry.

This is the only option
the hospitals gave me.

They gave me nothing else.

- You just say when, Julia.

I'm starting now.

- [whimpering]
Ow, ow, ow.

- Nine seconds. Ten seconds.

- Down, down.
Down.

- Down? Down? You sure?

- Down. Please go down.

Go down, James.
- Try to get to 30.

Try to get to 30.
- James, go down now.

Please, James.

- I know that Julia's had
plenty of breaks

off of antibiotics
for several months at a time,

and she's gotten sicker
off of medication.

So what do you do?

I can't just let her get worse.

You know,
we have to try to fight

until we feel like
we've exhausted everything.

- Night sweats, hot and cold.

Severe fatigue.
Shortness of breath.

Sore throats
and swollen glands.

Joint pain in the knuckles,
shoulders.

Severe headaches.
Burning, tingling,

and buzzing sensations
of the lower extremities

with loss of sensation.

Blurry vision.
Severe cognitive problems.

This is five months
into this treatment.

- Absolutely.
- The majority

of all these symptoms
are better.

- Don't open your eyes, Stephen,
until I tell you to open them.

Don't touch your eyes!
Don't--

all: ♪ Happy birthday… ♪

- I was forced
to write this appeal

because our insurance company
was calling Julia's condition

"not medically necessary."

I've paid high premiums
to my insurance company for years.

The fact that we were abandoned
by the insurance company

is unacceptable.

We still have people
showing us love

and showing us support.

Unfortunately, though,
the funds aren't there anymore.

Nobody really understands,
when you're dealing

with chronic disease,
you know,

treatment can go on
for a very long time.

[indistinct chatter]

- Hey, Cyclones fans,
direct your attention to the field.

It is time for our charity partner
of the night.

Julia has a long way to go
on her path to wellness,

and we need your help.

Please Google Julia Bruzzese
on GoFundMe,

and be as generous as you can.

- Support Julia Bruzzese
and her fight with Lyme disease!

Spin the wheel for $10
and win a prize.

[building tense music]

♪ ♪

[people screaming distantly]

[fireworks popping and whistling]

- When I'm with my friends,
even though I love my friends,

it's amazing to see
what their priorities are

and what mine are

and what they think about

when they're alone
in their bed at night

and what I think about.

[fireworks whistling]

Looking at a girl
or boy my age,

they kind of know
what their future's like.

That they're gonna
go to college, get a job.

But when I think about mine,
I just--

I know what I want to do,
and I know what my goals are.

And I just don't know
what I'm gonna be capable of.

And I think that's the scary part
of this disease,

that you don't know what
the next day is gonna be like.

[tense music]

♪ ♪

- During the 1990s, there was
all this fighting going on,

and I often wondered,

what is going
to change people's minds?

They didn't believe
that persistent infection

after antibiotic treatment
was possible.

Unless you can prove
the spirochete persists,

repeated antibiotic therapy
makes absolutely no sense.

And I agree with them,
that that is a fundamental thing

that you want
to be able to show.

What totally changed the world
of Lyme disease research

was in 2008, when one
of the world's best researchers

on Lyme disease
published a paper showing that,

despite antibiotic treatment,
the spirochete can persist.

And then Monica Embers
at Tulane published her paper

showing persistent infection
in the monkey model.

So if that happens in the mouse model
and the monkey model,

why wouldn't it happen
in the human?

- I lead the vector-borne
diseases corps here

at the Tulane Primate Center.

I can infect
ten different monkeys

with the same strain
of Borrelli burgdorferi

and see
very different outcomes

after antibiotic treatment.

What we found--some were
infected in the heart.

Some were infected
in the joints.

And probably the most
surprising aspect of it

was that we found
multiple spirochetes in the brains

of two of our
doxycycline-treated monkeys.

We know that they persisted.

- We're dealing
with a very unique situation here.

The current Lyme antibiotic

does not completely eradicate
Borrelli bacteria.

We found
this dandelion phenomenon.

The mower is equivalent
to the antibiotics

that chopped off the top part.

But because the root,
the persister, is still there,

they can grow back.

You need drugs
targeting both parts

in order
to more effectively cure

these persistent form
of the disease.

- I think the future
is good science

engaging top-notch researchers
and getting them excited

about the opportunities
in this field.

I've always stressed
that I think this field

could use people from the outside
taking a fresh look.

Just to be sitting
in one place together,

talking about the issues,
I've got very high hopes,

as do, I think,
everyone on the team,

that we're heading
in a very good direction.

- When I was at Tulane,
sitting in a room with, like,

15 people from all these
major universities,

all top researchers
in their field,

and for the first time ever,

they were all in there in the same room,

saying, "Okay, chronic Lyme,

"we may not have a cure.

"Chronic Bartonella,
we may not have a cure.

Let's work on this problem."

It's super hopeful.

But you still have these doctors

who are digging their heels
in the sand.

They're recognizing that there's--
a tide is turning,

and they're becoming
more vocal.

If you have three major
universities that come out--

Johns Hopkins, Tulane,
and Northeastern--

saying, "We can't kill Lyme
effectively in a test tube,"

then you have a major problem.

You have a major problem,

because your position becomes
increasingly untenable.

We have all this animal data
showing

that we're not curing
the monkeys,

we're not curing the dogs,
we're not curing the mice,

and we're not
curing the horses

with the same
antibiotic regimens

you're supposed to,
you know, cure people.

Of course it's gonna change.
Look, the truth is the truth,

and eventually,
it comes to the surface.

But it's bubbling up
very slowly,

like--like, glacially slowly,

too slow for people
who are desperately ill.

♪ ♪

- For years, the federal government
has spent very little

to look into the problems
of Lyme disease.

Compare that
to private foundations,

which have spent something
on the order of $100 million

in recent years
on research that today

is answering
some of the key questions

that weren't even being asked
by the federal government,

by the traditional
mainstream researchers.

They have written over and over

that Lyme disease
is not chronic.

They have published
in major American journals.

And the journals
are as invested in that view

as are these researchers,
as is the CDC and the NIH.

So to walk away from that now

would be very difficult
for them to do.

- We've come a long way

from when this seemed
like a pipe dream,

like, "Yeah, wow,
wouldn't this be great

if we could actually
image Borrelia?"

And here we are,
you know, two years later,

waiting to see
this all-important experiment.

You know, a year from now,
we'll be looking at a scan

of the first patient
getting this...

hopefully.

The current tests, you know,
only continue to fuel the debate

of whether chronic symptoms
are related

to the persistence
of living bacteria

or whether they're related to,
you know, some other cause.

If you could image this in the body,
I think that removes all doubt.

I'm not sure there's
a controversy anymore.

That, to me,
is pretty definitive evidence

that you've got the bacteria

and you need to be treated
for an active infection.

I should have told these bacteria,
"Don't piss me off."

- Oh. Whoa.
- Oh, wow.

both: Whoa.
- Whoa.

Look at that.
- Okay. [laughs]

- Starry sky.

Look at that.
- Oh, my gosh.

- That is, like,
spirochete city.

- You can see aggregates.
- Oh, my God.

- You can see a little bit
of smearing

and then a bunch of what looks
to be individuals.

- That's, like, unbelievable.
Look at that.

This is in the heart.

- Yup.

- What if you could
attach a toxin

that just wipes
those cells out?

I mean,
that's the magic bullet.

- Yup.
- Right?

Kill the target.
Avoid the normal tissue.

This is it.

This is, like,
proof of concept.

We can actually do this.

[soft dramatic music]

♪ ♪

Appropriate diagnosis
and treatment.

It's gonna save lives.

And you know what,
and vindication for everyone

who has been denied care
and told that they're crazy.

This is, like, for you.

Told, "It's all in your head."

But you know what,
it is all in your head.

It's right there.

It's in your head.
It's in your heart.

It's in your ear.
It's in your joints.

Good science
will trump bad behavior.

And when that change happens,
hopefully it won't just be

at the level
of clinical practice,

but it'll be public policy,
it'll be insurance coverage,

and all the other injustices
that have really been

perpetuated will sort of fall
by the wayside.

I'm very hopeful of the work
that we're doing.

Every day that I come in,
I push our team.

I implore them.
They all know your stories.

- Please join me
in welcoming Neil Spector.

Neil?

[applause]

- I want to tell you,
I think, a hopeful story.

We want to develop
a "theranostic"--

a therapeutic diagnostic
in one molecule.

- Here you are.
You're a physician.

You're connected.
- We need more research in this area.

That's one of my missions
is to raise awareness

that this is not a disease
that's easily diagnosed

and easily cured,
as many believe.

- Here is Dr. Neil Spector.

[applause]

- Thank you.
It's a great pleasure to be here.

This is my ten-year anniversary
of my transplant

from a misdiagnosis
of Lyme disease.

I know what it's like,
in a very tangible, real way,

to face your mortality.

So, you know,
I'm not somebody who doesn't

speak the language
of those suffering.

[cheers and applause]

It's hard, though.
You know, it's hard.

I mean, I get fatigued.
I get tired.

I need, frankly, to figure out
a better balance in my life,

because there are times
when I feel

like I'm heading
in a very bad direction

and losing sort of perspective
on my own life.

I may actually go home
and kind of relax

for a little while
before the next trip.

Hang out with my dog
and my family.

That'll be good.

[ambient sounds]

- It's been very complicated,
as far as treatment goes.

There's just not enough here
for Julia.

Even though we've seen
tremendous improvements

with Dr. Horowitz,

it's been, like, almost impossible
to try to overcome certain things

that I feel are really serious
in Julia's health.

So I've been doing
a lot of research

and looking at a lot
of different treatment options

in other countries.

The most promising thing
I found

was embryonic stem cells
in India.

Julia's been sick
for three years.

I think we've tried
everything.

There's one or two things
we haven't tried,

and this is one of them.

[tense music]

♪ ♪

Her diagnosis
for Lyme was missed.

You know, doesn't seem

like it's gonna be
an easy thing to fix.

- May I start?

Julia is a known case
of Lyme disease.

Is that correct?
- That is correct.

- And, Julia, how old are you?

- 15.
- Are you aware

that the [indistinct]
stem cell treatment

is an experimental treatment

and there are no guarantees
of any medical benefits

it will bear?

- Yes.
- And are you willing to undergo it?

- Yes.
- Thank you.

- You know, reading the consent,
I almost feel guilty.

You know, you always feel like
you're making the wrong decisions.

You don't know.

You know, as sufferers,
we're vulnerable,

so we, you know, are easy
to buy into anything, you know?

[tense music]

♪ ♪

- Okay,
just hold this position.

Can you just hold it there?
Yeah?

- Mm.
- Don't let it fall.

Bring it out.

Hold it.
Hold the position.

Try and hold it.
- There's no sensing.

- Mm-hmm. Mm-hmm.
- Can't sense, so...

Try and hold it.

Try and bring it out
towards me.

Bring it out.

Try and bring it out.

Out.
Try and take it in.

In. No?
- Mm.

- All right.

[soft dramatic music]

- One form of arthritis
may be caused by a germ

or virus that's being
transmitted by ticks,

the insects that thrive
in wooded areas.

The research could,
at the same time,

in the distant future,

lead to the development
of a vaccine

against this one form
of arthritis,

which is being called
Lyme arthritis.

- Around 1980, a law called
Bayh-Dole was passed.

Bayh-Dole changed
the patent law

to make it permissible
for grantees of federal funds

and also some of the federal
agencies themselves

to benefit from patents
that were acquired.

- This set the stage

for people who had,
at one time,

been just pure scientists

to actually make money
from their research.

And it set the stage
for some pretty concerning

conflicts of interest.

- So--okay, this is 1980.

So guess what.

1982, that's when the Borrelia
organism was discovered.

A, the Lyme organism
is arguably one

of the most complex bacteria
known to man,

and, B, arguably
or maybe inarguably,

it is the most heavily patented
bacteria known to man.

[tense music]

♪ ♪

So everybody has a piece
of this bacteria.

- A study out tonight
concludes lab tests

for Lyme disease
are strikingly inaccurate.

Experts say tests made
by more than 30 companies

who jumped into the business
are just not very good.

The government is now pumping money
into developing a better blood test--

a little late, experts say,

but a recognition that what was
once a regional problem

is now a national one.

- So in 1994,

the major players in the NIH,
in the CDC,

and the IDSA
came together for a conference

in Dearborn, Michigan,
to develop a standard test.

But the huge backdrop
was a vaccine.

A vaccine was in development.

And it would affect the way
this test was constructed.

- A Western blot is a test
where they actually take a blotter,

and on this blotter,
they take a drop of your blood

or your serum,
and they put it on the blot,

and it starts to move;
it migrates.

The bacteria has proteins
on the outside of its surface,

and your immune system recognizes
some of these specific proteins.

It's like a lock and a key.

If you have five
of these specific proteins

that show you've been
exposed to Lyme,

you have a CDC positive
Western blot.

- But what these powers
of Lyme disease decided to do

was to eliminate
two of those key markers,

because they were going
to be used

in the development
of a vaccine.

Those two markers
would be used

to spur the antibody response
when you got the vaccine.

So they decided they needed
to remove them from the test

so that if you had been vaccinated,

you would not test positive
for Lyme disease.

- Now, why is that important?

When you take away
the 31 and 34 bands,

which are highly specific
for Lyme,

you're then taking away
the possibility

for those people
who've not had the vaccine

to help diagnose this disease.

So if you come
to a doctor's office,

"Doc, I got a swollen knee.
I can't walk. I'm tired.

My memory's not working.
I've seen 20 doctors,"

and they bring
in their Western blot

and they've got four
out of five bands,

but your fifth band happens
to be the 31 or 34,

they would call that
a CDC negative Western blot,

yet you have Lyme disease.

- There is a vaccine,

but now there are reports
of serious side effects.

- By the late 1990s,
there were two companies

making two competing vaccines
that were almost identical.

One of them got mired
in lawsuits

because people claimed
there were side effects,

and it was pulled from the market,
leaving only LYMErix.

There were a lot of unanswered
questions about LYMErix.

The FDA panel that passed it,

they said that there are
a lot of unknowns here,

but they were passing it
through anyway.

- The safety issue here seems
to me to be very complicated

compared to any vaccine I know
that has been licensed.

Those who did the trial
have unearthed

some very interesting,
sinister possibilities

that may or may not be real.

And as I said earlier,
rare events will become common

when a million people
are vaccinated.

- I might comment that this
is fairly rare for a vaccine

to be voted on
with so much ambivalence.

So that is all
for the formal vote.

- In the years
since it's been on the market,

600,000 people have taken it.

Nearly 300 adverse reactions
have been reported to the FDA.

- Panel of experts
that advises the FDA

found the story so compelling
that it asked the agency

to carry out
a large-scale investigation

of possible harmful effects
of the vaccine.

- There was a meeting at FDA.

I was actually invited
to go to that meeting.

The star witness
at this FDA meeting

was the chief scientist
for the Connaught vaccine.

So you got it? Like--like, there was
Glaxo and Connaught.

Connaught pulled out.

He said, "Since LYMErix
has been given out

"to so many people,

"we can see that there are
some very severe side effects.

"These are not
common side effects,

"but some of them
are very bad,

"and I would never recommend
vaccinating people

with this vaccine."

- There is no such thing
as a perfect vaccine.

What we can say is that
this vaccine is very effective,

and it's very well-tolerated.

- It's been a nightmare.

Prior to this, I was hunting,
fishing, hiking.

- How much has it
changed your life?

- I don't have a life anymore.

- In April, the manufacturer
of a Lyme disease vaccine

took it off the market,
citing poor sales

following unproven allegations
of side effects.

- The vaccine was taken
off the market in 2002.

We have not had a Lyme disease
vaccine for 20 years,

and yet those two markers
were not restored to the test.

If you were bitten
by a tick tomorrow,

this is the test that would be used
to diagnose you.

Many people have
invested their careers

in this model of Lyme disease:

it's easy to diagnose,
it's straightforward to cure.

And that is the story
that prevails today.

But it's far different
from where we started.

[building dramatic music]

♪ ♪

In the beginning,
there was openness.

There was willingness
to consider lots of possibilities.

But over time, doors closed.

When I went back and looked

at some of the early
scientific literature,

I found a sort
of familiar illness.

So I'm just going
to read from a 1994 letter

by Allen Steere.

"It has become
increasingly apparent

"that the Lyme disease
spirochete,

"Borrelia burgdorferi,

"may persist
in some patients for years.

"Of particular concern,
recent studies have shown

"that the spirochete may persist
in the nervous system

and may cause chronic
neurologic involvement."

The word "chronic"
is there a couple of times.

- Some of the authors who have
signed on to those guidelines,

if you look
at their published work

from the late '80s
and early '90s,

their words say exactly
what we say--chronic.

- Once you get Lyme disease,
your body's immune system

doesn't deal with it terribly well.

It doesn't clear
that spirochete from your body,

and you can be infected
for virtually forever.

- And it's
a very scary disease.

- It doesn't really
have to be.

I think it's overemphasized
how bad it can be.

With prompt treatment
and recognition,

it's not a big deal.

- Another concept
that has been more or less

brushed aside
is whether a mother

can pass Lyme disease
on to her unborn baby.

- It was a dramatic
and frightening new development:

the germ that causes Lyme

can also travel
through the placenta.

- On occasion,
a pregnant woman

has been able
to transmit the illness

to the developing child
in the uterus.

This may have
serious complications

for the developing child.

We don't know how frequently
this happens at this point,

but it is something
that we are concerned about.

- They did autopsies
on these babies

and found spirochetes
in their tissues,

in their hearts,
in their lungs.

This was solid science.

But it became something
that was dismissed

in the mainstream literature
and practice.

They used to acknowledge
that chronic Lyme disease was real.

They used to acknowledge
congenital Lyme disease.

- But at a certain point
in time,

that became dogma,
that there's no such thing

as chronic Lyme disease, period.

End of story.

In order to qualify a vaccine,

it's much more helpful to have
a fairly simplistic model,

where you can easily tell
who has the disease

and who doesn't
have the disease.

And furthermore, you banish
the notion that the infection

can persist despite
application of treatment.

If you acknowledge
those biologic realities,

it makes it considerably
more difficult

to qualify a vaccine.

- After years of research,
it begs the question,

why is there still
no vaccine people can get

to prevent Lyme disease?

- I think the time has come

to reconsider the decision.

Lyme disease is the only
infection that I know of

for which
there is an effective vaccine,

but it's not available
to the public.

- And in fact,
the French biotech firm

Valneva
is testing a new vaccine

that is similar to LYMErix.

- Is this vaccine based

on different medicine
than the old one?

- No, actually, it's quite similar
to the old vaccine.

They did change it
a little bit.

They removed a protein
which they thought

may have been causing
some health problems.

But we now know
that the old vaccine

actually doesn't cause
any health problems.

[inquisitive music]

♪ ♪

- There are so many
conspiracy theories

swirling around the public,

like the anti-vaxxers, right?

And I think what happens
with Lyme disease

is that it gets swept up
into all of that,

when in fact,
in this situation,

we're not talking
about a conspiracy.

We're talking
about flawed science,

science that has
been reinvented

to facilitate products.

- It would be great
if we had a vaccine

that was effective and safe.

But that's not gonna solve
our problem of ticks.

And moreover, we can protect
ourselves from Lyme disease,

but there's other things,
as we know, in ticks.

We need a vaccine that would
attack all of these illnesses.

An anti-tick vaccine really
would be the ideal approach.

But beyond that, we have
this other elephant in the room.

We have the many, many people,

year after year,
who remain sick.

- This is a hard problem.

The way to resolve it,

it's not to make everything
so simple and so cut and dry.

It is to really look
at the nuance.

I really did come to believe,

after all of this research
and investigation,

that the definition of Lyme disease
had been twisted

to accommodate the passage
of that vaccine.

It was a business interest.

It was a rationalization
in the interest of a product

but not the patient.

[elevator bell dings]

[indistinct chatter]

- I want you to look at that.
- Yeah.

- This is your brain stem.
- Yes.

- This is responsible
for balance,

for swallowing, for breathing,
for heart rate.

This very tip of the brain
right here

is your motor strip.

It starts with your hips
and your legs.

Okay.
So look.

Gray.
- Yeah.

- Orange, purple, white,
that's healthy.

- Okay.
- These colors are damaged.

Number five is black.

- Yeah.
- See the black?

You have a lot
of damage to it.

You can't even see
your brain stem.

Your brain stem
is completely black.

Your motor strip,
sensory, all black.

That's why you can't
move your legs.

That's why you can't
feel your legs.

[choking up]
You have your answer today.

- So I'm not going crazy?

- You're not going crazy.

Dr. Shroff said

that without treatment for Lyme,
this gets worse,

and pretty soon,
you would have lost everything.

Three years of treatment,
and I keep questioning myself

if I'm doing the right thing.

We've been doing
the right thing.

We've been keeping it at bay.

What did you tell me today
during your MRI?

You said, "Why do we have
to do this again?

They're not gonna find anything."

See? You found something.

This is why you have
the issues you have.

Look. They're right there.

That's damage.

You're not going crazy.

[tense music]

♪ ♪

[somber music]

♪ ♪

Julia and I initially were
supposed to be in India

for three months.

But the clinic shut down,
and we were forced to leave.

Unfortunately,
the stem cells really didn't

change that much.

A lot of letdowns.

But if we want
to get Julia better,

we have to give trust.

We have to try.

[hopeful music]

♪ ♪

We long for her to walk.

[indistinct chatter]

I would like to see her dance
with her friends.

I'd like to dance with her.

It's the simplest things that
we take for granted every day

that I pray for with Julia.

- My legs hurt.

- But we'll get there.
[sniffles]

We'll get there slowly.

And I think
when we do get there,

it's gonna be very rewarding.

[indistinct chatter]

- Let's have a round
of applause once again

for Julia Rose.

[cheers and applause]

- The 16th candle,
I've been told,

is for your greatest love,
or even your hero.

When I thought about
who that one person was,

one person came to mind.

And that was you, Dad.

Dad, the greatest doctors
in the world

weren't able to figure out
what was wrong with me,

but you were.

Without you, I'm afraid
I wouldn't be here today,

giving you guys a speech.

[cheers and applause]

Thank you for holding my hand
through every blood test,

every scary procedure,

and every single hard time.

You are my hero,
my greatest love,

and my biggest inspiration.

My idea of a miracle
has definitely changed.

- Holy Father!

- That day,
I asked for a miracle,

and my miracle, in my mind,
was getting up from the chair

and walking
and going back to that life

of normalcy and dancing, and--
and it is still.

That's--you know,
that would be a miracle.

But I think miracles
happen every day.

I think that me sitting here
talking to you is a miracle.

What happened to me
and the reaching out

and the love,
that's a miracle.

[applause]

And I think
we don't even realize it.

The little things every day
that we have are miracles.

all: ♪ Hey, baby, ooh, ah ♪

♪ I want to know ♪

[cheers and applause]

- It's funny, people ask me
all the time,

"Are you angry that you
weren't diagnosed early on

and you could have
avoided all of this?"

And I tell them
I'm actually not angry.

I would certainly never wish
what I went through on anyone.

But, you know, in some sense,

I feel like it was part
of the bigger plan for me.

Wasn't always pleasant,
but you know what?

There's been so many good things
about what I've gone through.

Whether I live five hours,
five days,

50 months, or 50 years,

it's got to be,
like, a fulfilling life.

I mean, I can't look back
and regret not having done things.

[atmospheric music]

♪ ♪

Happy belated New Year.

People have asked me
if everything's okay.

They hadn't heard from me
in a while.

And I just wanted
to send this message.

You know, I may look tired.
I am pretty tired.

I think I need to conserve
my energy for the push ahead.

I made a promise to all of you

that I would continue
to work tirelessly.

I will continue to honor
that promise,

and my thoughts and prayers
are with all of you.

So take care.

[soft dramatic music]

♪ ♪

I've taken care of people
at the prime of their lives,

great jobs,
beautiful families,

devastating cancers.

Like, "Why did this
happen to me?"

I mean,
that's the universal question,

"Why did this happen to me?"

My grandmother used to say to me,
"Why not you?

Why shouldn't it happen
to you?"

The question is not, "Why?"
but, "How do you move beyond it?"

[hopeful music]

- I think about the people
who have died

and that are dying

and the people who are alone,
and I feel very guilty,

because I'm getting
all this help,

and these people
need help too.

I feel like I'm obligated
to do this

and that this needs to happen
in order for there to be a change.

I was a different person
before Lyme,

a normal girl.

Now is the time for action.

We must stand together as one.

For the people
suffering right now,

let us be their voice.

For the people we have lost,

let us grieve them
and fight in their memory.

I'm determined
to bring about change,

and I trust that together,
we can bring hope

to those who have forgotten
the meaning of the word.

My mind is there,
but my body isn't yet.

But I'm determined,
even if I am in a wheelchair

and I am sick,

I want to help more people.

- You can't give up.

Because if it was you,
your family,

you can't just turn people away
and say there's no hope.

People are contacting me
all the time,

from all over the world.

I need to share
this information

because this
is a worldwide epidemic.

- The whole world
is in disastrous situation

because of the position

of a small group of experts

at the IDSA

in the United States
of America,

because they made
recommendations,

and it was imposed
to the whole world.

- So here we are in the midst
of a huge epidemic.

We've all come
to an understanding

of what this can mean
in our everyday lives.

In the case of COVID,
we are accepting

that there is something
called long-haul.

The difference is,
they are being taken seriously.

But Lyme disease has been
this quiet epidemic

for decades.

We all have to realize
that we're at risk.

This is a growing
and common threat.

And yet for too long,

the problem
has been minimized.

Settling this debate is going
to require new researchers,

new science.

We need new ideas
about Lyme disease

and people who are willing...

To challenge the old guard.

- Right by my tweezer,
that's a larva,

and it's fully engorged.

It's probably going
to drop off today.

The fully engorged larvae
look like poppy seeds.

One larva, right ear.
One larva, left ear.

- We have an early warning
in your health this morning.

- Scientists predict this could be
the worst Lyme disease season in years.