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[ambient nature sounds]
[serene music]
♪ ♪
[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.