Here's one. Here's
one. Here. Here. Here. So, that's 81 larva
in one 30 metre 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. They're in the south,
they're in the far west, and that means that these
things are everywhere. 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. 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. Last year, there were
cases reported in 24 states. 37 States. 43 states. 45 states. And it may be as
close as your backyard. It's really hard to make people
understand what's at stake. It's so much more than
just suffering and disease. It's like an atomic bomb
drops down on your life and just turns everything
upside down. Tons of medications. These are pill organisers. Oxygen.
Empty meds. Those are all full. This is what life became. I would let
it all burn just to see Julia walk. As a kid, I was
very eager. I was very active, I loved to dance,
and I used to love to ride my bike. 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, 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. And when I got there, I
found Julia in the nurse's office, and she was just
lifeless across two chairs. I went to go nudge Julia, and
I'm, "Julia, Julia, what's the matter? What happened?" She's
like, "Dad, I can't see." 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 this 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. 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 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. They saw nothing wrong
in the laboratory test. Then they figured
she must be faking it. I remember just hearing
that and 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
a fever? The colour blue. She was
blue in colour. The doctor insisted that this
had to be ‘conversion syndrome’. 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? 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 ten, 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. 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
centred in Lyme, Connecticut, a small town located
on the Connecticut River. 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? 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 bullseye 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 recognised in the Lyme community as
someone who was not their ally. 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. As Lyme disease evolved,
doctors needed guidance. So, a group
got together called the Infectious
Diseases Society of America, 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
overemphasise 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. 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 incredible. People would get sick, you'd
treat them, they’d get better, and then the same symptoms
would start creeping back. How can an organism
survive these antibiotics? 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 bullseye 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. It 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 test. 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 two 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? It is my honour 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
tickborne 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." You can do all the
right things in the world and get bit by a tick, and
it'll change your world forever. 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'd 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 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, I cannot
live beyond a certain age. I'm never going to see
my daughter grow older, I'm not going to see
any of the milestones. And then I just
realized, you know, I'm not going to just roll over
and let that be the answer. I'm going to do
whatever it takes. A few minutes after telephone call
that your new heart has been found. 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. 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. It was a very hard time for all of
us. We felt we were losing Julia. I had nobody to
take care of Julia, so me and my wife had to make a
decision; one of us had to stay home. My dad decided that he
wasn't going to 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. Here he is. He steps out
of the plane, and it's almost like he
makes a beeline straight to me. 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 because I
wanted to meet the Pope, because 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.
Vibrant, healthy, 12-year-old girl... You know, suddenly, like a
second, my life just changed. 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 exposed, and, you know, we
didn't realise 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. 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 Philip 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. Anti-Science. Who, like,
publishes this stuff? So one of the problems with
these anti-science 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 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 ostracised 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? Now, you could either say they all
have in common that they're crazy, or you could say there's something
out there that's causing this. 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 20 plus years, and now we're finally going to
be applying this to Lyme disease. What if I told you that we could
image Lyme disease in your body? I mean, just like
it is for cancer, this would be revolutionary in the way
we diagnose and then the way we treat. Over here. Take a nice deep breath.
Good. Let me see what your reflexes... Yeah, they're cold. 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 going to 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 tickborne diseases that can be transmitted
by the bite of a tick. 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. 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 recognises
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 weren't 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 have 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. During the 1990s, there
was all this fighting going on. And I often wondered what is
going to change people's minds. What totally changed the world of
Lyme disease research was in 2008, when one of the world's best
researchers in Lyme disease published a paper showing
that despite antibiotic treatment, the spirochete
can persist. We're dealing with a
very unique situation here. The current
Lyme antibiotic does not completely
eradicate Borrelia bacteria. We found this
dandelion phenomenon. The mower is equivalent
to the antibiotics, that chopped
off the top part. But because the root, the possessor,
is still there, they can grow back. You need drugs
targeting both parts in order to more effectively cure
this persistent form of the disease. 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. 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,
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 only
continue to fuel the debate of whether chronic
symptoms are related to the persistence
of living bacteria, or whether they're related
to 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, wow. Look
at that. Starry sky. Look at that. That
is like spirochete city. You can see aggregates, you
can see a little bit of smearing and then a bunch of what
looks to be individuals. This is unbelievable.
This is in the heart. What if you could attach a toxin
that just wipes those cells out? I mean, that's the
magic bullet, right? Kill the target, avoid the
normal tissue. This is it. This is like proof of concept.
We can actually do this. Proper diagnosis and
treatment, it's going to save lives. And you know what, and
vindication for everyone who has been denied care and told
that they're crazy. This is 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 behaviour.
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. 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. 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. At a certain point in
time, that became dogma. That there is no such thing as chronic
Lyme disease. Period. End of story. And it's a very
scary disease. It doesn't really
have to be. I think it's overemphasised
how bad it can be. With prompt treatment and
recognition, it's not a big deal. 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. 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. 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? 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. You 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. 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. 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. And yet, for too long the
problem has been minimised. 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. We have an early warning
on your health this morning. Scientists predict this could be the
worst Lyme disease season in years.
