1
I didn't know what was happening to me.
I thought I was gonna die.
He kept saying to us,
"I have no idea what this is."
"I've never seen this before.
I've never heard
of this before."
"We don't know
what's wrong with you."
Dark and not seeing
any light of recovery.
We have, I think, a horrible epidemic.
When enough people are sick,
it's gonna be, "Who's answering for this?"
What did you know?
When did you know it?"
What kind of a breakdown
or series of breakdowns
in the medical system
can lead to a setting
where you have an illness
and people walking into
their average doctors' offices
may or may not be likely to get
effective treatment for it?
I would never, never have thought
that a bacteriological infection
producing the havoc
that it produces
can become so politicized.
The truth can be so brutally distorted.
When we moved to where we are now,
the people we bought
the house from said to us,
"Be careful of Lyme disease."
And then we met all the neighbors.
Every house, for sure,
had at least one case,
and many houses had...
All of the family had been infected.
All of them were sick.
Are you able to stand up, honey?
All right, I'm gonna shut this off
so we can take you
back in the house, okay?
Okay. Okay.
All the articles basically state
that this really isn't
that big of an epidemic
and that it doesn't really
do that much to your body,
and that it's just
a very easy, quick cure,
a couple weeks of antibiotics,
and you're good to go.
Obviously, those people haven't
actually seen what it does.
Pain, pain, pain, relentless pain.
No one would believe it.
I said to my best friend,
I said, "Look at me right now."
Look at me.
What do I look like?"
And he said, "You look great."
I said, "You cannot imagine
the pain in my body right now."
My case was sort of cut-and-dry.
A, I was a park ranger.
B, I knew exactly when I was bitten,
and I saved the tick
and brought it to my doctor.
C, I had a red rash,
and D, I had a rather classic case
of neurological Lyme disease
with all the usual trimmings,
but I brought all that to the doctors,
and it took five doctors
to figure it out.
"I don't think you're sick.
I don't think there's
anything wrong with you."
Everybody's telling you
it's in your head.
You know it's not in your head.
We don't think
there's anything wrong with you.
"There is nothing wrong."
"We've done your labs.
Your labs are fine.
You're fine."
"There's no medicine
for someone like you.
"You're an attractive girl,
and obviously,
you don't feel like you're
getting enough attention."
This is my adrenaline now.
So if you want to see me get worse,
I'll just do one length,
not even a lap, half a length.
I'll have to be hauled out
like the catch of the day.
She's become very,
very good at hiding symptoms.
It doesn't matter how bad she is.
I mean, the girl cannot get out of bed,
and her catchphrase is,
"I'll do it myself."
- I can do it myself.
- That's right.
I mean, she can do...
I can go grab something in 30 seconds,
or she can take four hours
to crawl across the house,
and she will not let me go get it.
I know what my bad days are like,
and I do my best to try to prevent them,
so to know that I could get worse,
that's not something
I'm looking forward to.
The unknown is pretty scary.
I live on the west side
of the northern Sierra Nevada
in California.
I'm a writer now.
I was a park ranger for 21 years
until I got Lyme disease and had to quit.
It began with profound fatigue.
Then I developed stabbing
and shooting pains.
I started having vision problems,
blurred vision,
and then came the memory loss
and the cognitive problems.
And once, I drove to my office,
a place I'd commuted to for 13 years,
and stopped on the way home
and called my wife on the cell phone
and told her that I wasn't sure
I could find my way home.
I just wasn't
in good enough shape to drive,
couldn't remember how to do it.
If I hadn't had any kids,
I might have killed myself.
My life was so uncomfortable
to be in instead.
I don't know that
I would have wanted to be here
had I not had stronger
family connections, you know?
Kept me here.
I'm an event producer
for U2 shows on tour.
I get to do the VIP parties
for all the band's guests.
I've loved this band since I was a kid.
I mean, I had the freaking
personalized license plate.
Everybody's in survival mode on tour.
It's insane.
It's completely insane.
The hardest thing is,
everybody thinks I'm normal.
At home, I was in bed
and feeling just so sick,
and just searing, searing pain.
It got worse and worse,
and I started having pretty bad
neurological problems.
I got to the point of just do or die,
just go for something
instead of sitting in my room,
rotting in my bed.
Over the last 12 years,
I've been diagnosed
off and on with lupus.
Chronic fatigue syndrome,
Crohn's disease.
- Fibromyalgia.
- Lupus, fibromyalgia, MS.
- Fibromyalgia.
- Rheumatoid arthritis.
Doctors thought I had ADD.
- Chronic fatigue syndrome.
- Chronic fatigue syndrome.
- Parkinson's disease.
- Syphilis.
- Multiple sclerosis.
- MS to ALS to nothing.
They were pulling anything
out of their hat they could think of.
Doctor after doctor
after doctor after doctor
after doctor misdiagnosing her,
putting her on some medication
that didn't work
and just thought we were both nuts.
There's evidence that Lyme disease
has been around for a long time,
but here in the United States,
it was the early 1970s
when a Connecticut mom
looked around her neighborhood
and noticed something
was not quite right.
Well, I was frightened, really,
and doctors, you know, were insinuating
that it was all in my head.
In the '70s, we were all
having strange symptoms,
headaches and stiff neck
and swollen joints.
As I looked around the neighborhood,
I realized that there were others
that were having swollen knees
and rashes.
Finally, when our symptoms
just weren't going away,
I decided to call
the state health department
and report this mysterious disease
that seemed to be coming to our area.
In 1981,
I discovered the causative agent
of Lyme disease.
My discovery was published
in the Science magazine
and considered as a breakthrough.
We didn't know how to treat it.
It was a newly described germ.
It looked like syphilis
under the microscope,
but that's as far as we got.
We also didn't have any idea
how widespread it was,
how much suffering it caused,
and the controversies to come.
Lyme disease is caused by bacteria,
the Borrelia spirochete.
It's spiral-shaped,
so it can drill through tissue
and get into just about any part
of the body.
The most common form of transmission
is through the bite
of several species of tick
commonly known as deer ticks.
There's bacteria inside the tick,
so when it bites you,
it just starts sucking up your blood
like Dracula would do.
While it's, like, sucking in the blood,
the bacteria will be released,
and then it just gets into the blood,
and it gets into your heart,
and then your brain,
and then you have Lyme disease.
It'd seem like for every thing
that I'd read about it
that it was harmful,
there was always something
I'd read about it that said,
"No, no, no.
It's actually
very easy to cure."
Well, when I saw this doctor,
you know, he said,
"You've got
a long road ahead of you."
I, Mandy, take you, Sean...
- To be my husband...
- To be my husband...
- To have and to hold...
- To have and to hold...
- In sickness and in health...
- In sickness and in health...
- To love and to cherish...
- To love and to cherish...
- Until death do us part.
- Until death do us part.
- It's not the pale...
- Husband and wife.
That excites me
There's no difference
in how I feel about her now
and how I felt about her then.
We'll see if he says that
when I'm starting to get treatment
and I'm all...
No
It's just the nearness of you
I think, like a lot of people
who've had Lyme disease,
I've been led to wonder
why it's not being treated
with the kind of seriousness
that it deserves.
This is not a rare disease.
It's thought of as a rare disease,
but in fact, there's nothing
controversial about the fact
that it's the most common
vector-borne disease
in America today.
It is far, far more common
and much more dangerous
to the average American
than West Nile virus is.
The Centers for Disease Control
reported over 35,000 new cases last year.
Yet because the disease
is so often overlooked,
they admit that the actual number
may be up to 12 times higher,
making Lyme disease
far more prevalent than AIDS.
In the past 15 years,
annual cases have increased fourfold,
and in the past two years alone,
cases have almost doubled.
The number of cases
of Lyme disease went way up
in this country last year,
up by 41% to be exact.
A record number of Lyme disease cases
have been reported in the state
of Maryland this year.
New cases of Lyme disease
are up 50% in Massachusetts.
The CDC admits
there are at least ten times
as many cases out there.
The entire neighborhoods
and whole families
are being debilitated
by this infectious disease.
Health officials
are now calling it an epidemic.
I think there are hundreds
of thousands of people out there
who have Lyme disease who have
no idea they have Lyme disease.
There are doctors out there
who aren't looking for it.
He just kept saying,
"You don't have Lyme."
"You don't have
Lyme disease."
"You don't have Lyme."
He told me there was no such thing
as Lyme disease in North Carolina.
"Lyme disease doesn't
really exist in Tennessee."
"You can't have Lyme disease,
because you haven't been
to these areas in Long Island
or this area in Connecticut."
I've been told it isn't Lyme
hundreds and hundreds of times.
How do you know you have it?
"Why do you say you have it?"
He slammed his fist
on the table and said,
"Don't talk to me
about Lyme anymore."
It is a national health crisis
that is completely and totally
being ignored and squashed.
What is going on?
We have a major problem
with this disease.
We have a major problem
finding out who's got it,
treating them effectively and quickly.
It's far more expensive
to treat in late stages
and less effective than it is early,
and yet we don't respond early enough
with many of the patients,
and many of them get to late stage,
and they're sick
for the rest of their lives.
Okay, quiet.
No barking.
No barking.
Okay.
- Have a good day.
- I love you, my girl.
I'll see you later.
I'm a medical doctor
with a specialty in pathology.
I'm a general pathologist,
but I'm doing molecular studies now
in connection with my 20 years
of researching Lyme disease.
The research is something that I do
after I've done my day's work,
and if I have energy left,
I work into the night,
so I do the research on my own time.
Okay, hi, Travis.
My lab assistant Travis.
This part of the cellar is mine.
The rest of the cellar
is for other things in our life,
like Christmas ornaments.
This is my microscope.
I've owned this for 20 years.
It's a research microscope.
My work is building bridges
between what I can see
under the microscope
and what is going on in the human body.
The orthodox, conventional view
is that the bacteria
that causes Lyme disease
doesn't stay around very long
inside the human body.
That will be disproven,
and we will enter an arena now
where long-term, chronic infections
will be embraced
by the medical community,
and the patient will benefit.
Alan MacDonald is doing frontier research
about the role of Lyme disease,
Borrelia infection
in neurological illnesses,
and he's doing it against
substantial resistance
in the traditional academic community.
I'm one man working alone,
and there is great skepticism
that my work has meaning,
and I'm working hard
to get some evidence to say
that there is some meaning,
and time will tell.
Two groups of doctors
are pitted against each other
over just about every aspect
of Lyme disease,
from the very definition of the illness
to how it should be treated.
At the present time,
the traditional medical community
believes that there is
basically only an acute form
of the disease that is characterized
in a sound byte as "hard to get"
and "easy to treat."
For 10 or 15 years, there's been
a second group of Lyme doctors
that say, "No, that's not true."
"Lyme disease can be
a persistent, chronic illness
with many different symptoms."
So the question that is posed
at the present time is,
"Does chronic Lyme disease
really exist?"
We are driving from Orlando up
to North Carolina.
It's a little over 500 miles,
which is the closest spot
that we have to Florida
that actually has a clue about Lyme.
My biggest fear is that treatments
would be unsuccessful.
She could continue
to have a downward spiral.
Neurologically, she could have
things that are irreversible.
Yeah.
Okay.
While we're optimistic that
Mandy will steadily improve,
I'm skeptical that it's gonna be
smooth sailing.
She's so fragile,
and her central nervous system
is so irritable.
It doesn't take a lot to set her off.
We have to figure out what's the best way
to treat you intermittently
to get you to the best place
so that your immune system
is more in charge,
so that's a tricky business.
He said, "Well, we're gonna
have to do six to eight months"
"of antibiotic therapy.
"We'll have to put a catheter in,
"you know, to your superior vena cava,
and then you're
gonna probably get worse."
So I said,
"Well, by worse, do you mean,
like, emergency room worse?"
And he said, "Yeah."
Let's just do one at a time.
Let's do this one,
and this is as needed, right?
Lorazepam, and then here,
your supplements, that's fine.
These are all fine.
What I sense is that we're
at the beginning of something
that's gonna be huge,
just like I had that feeling
20-some years ago with HIV.
I've been seeing people
from all over the country.
They're sick.
They've got a complex illness.
They're being ignored.
It's gonna be
an explosive area of medicine,
and we're gonna learn
a lot about chronic illness,
and I think that's gonna help health care
in general tremendously.
I have seen probably 30, maybe
more, doctors.
- 30 doctors.
- About 15 doctors.
I've spent over $100,000 out of pocket.
- $150,000.
- $75,000 to $100,000.
I was misdiagnosed for 3 years.
- 5 years.
- 14 years.
15 years.
It's hundreds of thousands of dollars.
I'm guessing that my case,
which could have been
controlled with, probably,
a single bottle of doxycycline
at the time I was bitten,
probably would have cost
something like $25 or $50 total
plus the doctor visit.
As it is, I'm guessing
that my case has now amounted
to $75,000 to $100,000.
My concern is that
the majority of the patients
that I see here in this office,
this very office,
who come to me
because they've been treated
for chronic Lyme disease,
is that they don't have any evidence
of ever having had
Lyme disease once, ever,
not now, not a year ago,
not five years ago.
They didn't have the rash.
They never had a positive blood test.
They never had anything.
You see, class,
my Lyme disease turned out to be...
psychosomatic.
No, that means she was faking it.
No, actually, it was a little of both.
I was originally told
at the very beginning
that I had a very deep
psychological problem.
They were telling me it wasn't real.
They said I needed to see a psychiatrist.
"You need
to see a psychiatrist."
He told me, "No, it's not Lyme."
You don't have the rash.
You are depressed."
"You're faking it.
You need to get mental help."
"You're a teenager.
Get up and walk."
"She doesn't want to go to school.
You know, she's just depressed."
You think you're crazy, but I'm not.
I know I'm not crazy.
This thing screws you up big time.
Tallyho.
Let the drag begin.
Well, where we are now
is a town in Cape Cod,
and Cape Cod is considered to be
endemic for Lyme disease.
I'm good.
This is a male deer tick
that we picked up
from the ground on
our very first 30-second drag.
This is a deer tick nymph.
This is the second stage.
They'll feed on a host
for five days, maybe,
and that's how Lyme disease
is transmitted,
and it just doesn't seem possible
that this poppy seed-size thing
is gonna make you bedridden,
possibly for the rest of your life.
Now we're trying for a deer tick female.
That'll complete the trinity.
And here we are.
The trinity is complete.
There are two females.
Let's call them Thelma and Louise,
and they're on the hunt.
There's another male.
There's another nymph.
We got another nymph.
So our odds of getting
Lyme disease here are going up.
Despite years of education,
the incident of Lyme disease
has been raised by 40% from last year.
It's only going up.
This is all tick habitat,
everything we're driving by here.
And Lyme is turning up in states
where it's never been known.
I mean, I grew up
in this part of the world,
and we didn't have a problem
with Lyme disease
that we know about.
I'm convinced that in the long run
that what we're gonna learn is
that we're seeing a process
of ecological change.
We're living in the largest
extinction in 65 million years
of other forms of life.
While many species are dying out,
viruses and bacteria
are finding new opportunities.
Warming climates, jet travel,
and human expansion
into wildlife habitats
are favoring diseases that jump
from animals to people,
diseases we're not prepared for.
It's possible that, years ago,
the patients were only getting
pure Lyme disease,
and this might explain
why the literature,
there's such a disparity,
where some people say, "Oh, no,
Lyme doesn't look like this."
What we're now seeing is,
these ticks are containing
multiple organisms.
They're not just containing
Borrelia burgdorferi,
the organism that causes Lyme,
but they're containing
ehrlichiosis, Babesia microti.
It's a malaria-like organism.
When you get Lyme
and ehrlichia and Babesia
and Bartonella henselae,
cat-scratch fever,
and Mycoplasma fermentans and viruses,
the immune system gets overwhelmed.
I'm not sure, years ago,
all of these co-infections
were present as they are now.
Now the patients
who are coming in to see me
are multiply co-infected.
They're much, much sicker,
and it's because
it's no longer just Lyme.
"Ticks are very sensitive to dryness.
"Their bodies desiccate easily,
and in dry weather,
"they hide deep in mossy
crevices on the barks of trees
"or in the leaf litter
or in wood rat nests.
"Damp weather, however,
makes them more active,
"and they come out and stand
around the tips in branches
"and blades of grass
by trails like hitchhikers
at a freeway on-ramp."
I want us to see clearly
how things are really going with nature.
We have not succeeded in developing
any level of independence from it,
nor, in fact, are our bodies
in any way independent of it.
We've always said,
"Well, you know, sooner or later,
"some of the damage
that we do to the Earth
can come back to people,"
but I think at some visceral level,
we've expected we could evade it,
and I think now
maybe some of that bill is coming due,
and we're beginning to see
some ecological changes
that are capable
of invading people's bodies.
A spirochete is a parasite
like a virus is a parasite.
It has to adapt
to different environments.
So you could have
a very virulent,
disease-producing organism.
You could have one that likes
to go to the joints
and doesn't want to penetrate
and cause injury in the brain.
You could have one that goes to the skin.
One of the hallmarks
of the onset of untreated Lyme
is a multisystem involvement,
different parts of the body,
things changing, moving around.
You might have a few weeks of body aches,
and then you might have
a few weeks of headaches
and a few weeks of real profound fatigue
and few weeks of confusion,
or you'll have pain in the large joints,
and then it'll switch
to the small joints,
and then, you know,
you're going to a neurologist.
Then you're going to a bone doctor.
Then you're going
to a stomach specialist.
Then you're going to a counselor,
and they get labeled as being crazy.
- Severe headaches.
- Cognitive problems.
- Fatigue, headaches.
- Cardiac arrhythmias.
It hurts on my foot.
Joint pain.
I have arthritis.
I'm tired.
I hurt.
- Involuntary movements.
- Brain fog.
I lost the use of my right arm.
- I became dyslexic.
- I had hallucinations.
- Blurred vision.
- Light sensitivity.
It's a long laundry list.
The tests for Lyme disease
were developed more than a decade ago.
They were controversial
back then, and in all this time,
no better tests have been approved
even though almost everyone agrees
there are problems
with the current tests.
About 50% of people
who actually have Lyme disease
are negative in their test results
with existing methods.
If you're unlucky
and you have real disease
but you test negative,
your disease is still real,
and you still require treatment.
When I got diagnosed
with Lyme, I thought, "Great."
"Fantastic.
"Finally, finally, I'm gonna
get rid of this thing.
Course of antibiotics,
I'll be good to go."
I could never have imagined
that it would be this long
with the possibility of being forever.
The more you see, the less you know
The less you find out as you go
I knew much more then than I do now
Go for Dana.
Neon heart, Day-Glo eyes
A city lit by fireflies
We're advertising in the skies
I'm very scared of...
Actually when the tour ends,
because I feel like my body
will collapse.
I'm a little...
You know, I'm definitely going
on adrenaline,
and the pain's getting worse and worse,
and I'm getting, you know,
more twitchy neurological things.
This is a brilliant distraction.
It's so weird, you know?
When you're a kid,
you think of what your life's gonna be,
and I'm 36.
I'm gonna be 37,
and by now, kids and a house
and, you know, it's not what I expected.
Lyme pushes you to the point of,
"What do you want?
What are you living for?"
It's not enough just to be alive.
I mean...
This is the height
of the season for baseball,
summer vacations, and Lyme disease.
The disease is now being
reported in almost every state,
and it's reached epidemic levels
in some parts of the Northeast.
The newest research indicates
the tiny bacteria
pose a special risk during pregnancy,
since an expectant mother
may not know she's infected.
We have examples of the infection
causing miscarriage.
We have examples of infection
causing death of the baby
at the time of birth
or shortly after birth.
I've had four miscarriages,
two of which were positive
for Lyme disease,
and we had an 18-week loss
that at 15 weeks was healthy,
genetically fine, and at 18 weeks,
the loss was proven
to come from the Lyme infection.
Elise came to me with Lyme disease,
and it just so happened
that as she was finishing up
the treatment, she got pregnant,
and we followed her with the pregnancy,
and she was doing fine initially,
and all of a sudden, she miscarried.
Two weeks later,
the OB came back and said,
"You were right.
"It was Lyme disease.
The baby was infected.
The fetus and the placenta
were infected, Elise,"
and concluded that
that's what took the life
of this baby at 18 weeks.
In utero fetal transmission
of Lyme disease to a fetus
is something that has been
of concern to patients
and physicians for many years.
We've looked carefully at that.
There have been numerous studies.
There's not been one documented
case of congenital Lyme disease.
Well, that's nonsense plain and simple,
and it's not only nonsense,
there's significant,
peer-reviewed articles
showing transmission transplacentally
and at autopsies.
It's just nonsense.
How could that not be?
It doesn't even stand up physiologically.
That makes no sense.
Trying to have another baby
has been very frightening.
When I get excited about having a baby,
I squish it.
I don't let myself get excited,
because I'm so afraid
of setting myself up
for that disappointment again.
And a day for me is like a lifetime,
and every visit to the doctor
is filled with fear.
Every time I listen to that
Doppler come down to my belly,
I wonder, "Is there going
to be a heartbeat today?"
At this point, I have had many women
who have gotten pregnant
who've lost the baby
or they give birth to a baby
that has Lyme,
and the babies don't have...
The developmental growth may be off.
Their IQ may be lower.
They may develop seizures
or some other type
of neurological problem,
and it's not picked up
because the mother
was not known to have Lyme.
You can't imagine this.
How could you?
You just can't.
Hi, my name is Jared.
Before my Lyme disease
got so bad, I was able to talk.
Now I have to use a communication device.
I wasn't a real healthy
pregnant mom with him.
Well, in retrospect,
I realize that I was sick.
I had Lyme disease,
and I did not realize
that that's what was going on.
I knew something wasn't right
from the time he was born.
I knew it.
I kept getting pooh-poohed
by the doctors.
They said, "Just let him be,
and it'll all work out,"
and it didn't work out.
At age six, we got the news
that he had brain damage,
and they didn't really know why.
They thought it was something
that happened in utero
and that the damage was done,
and then we were to just keep
moving forward,
but he didn't move forward.
He kept moving backwards.
Need you to bend, bud.
Lyme disease happened to be
everywhere around us by then.
It was as if every neighbor
was coming down with it,
and it was, like,
hitting me from every direction
as if, you know, "Wake up, dummy."
"You're not paying attention, you know?
There's Lyme disease
everywhere."
There's a gentleman that lives
right up on the hill up here,
and his previous wife passed away.
She had Lyme disease,
and now he's remarried,
and his new wife has Lyme disease.
This man here was very ill
from Lyme disease.
And the house over here to your right,
those people had it,
and the same
with the lady that lives here.
She has it.
I had put a lot of faith in the doctors.
I believed them.
I want to just shake them and say,
"How many more kids
"are you going to let go untreated
because you're not recognizing
what's happening here?"
I've never seen a child
who's had late-stage
neurologic Lyme disease.
We just don't see late
neurologic disease in children.
I used to do ballet,
and I was in The Nutcracker
a bunch of times.
That time of year
was always really crazy and...
Running around,
going to rehearsals and stuff,
but I loved it.
Her ankle was bothering her,
then her right knew blew up,
and they tapped into it,
and they found
that she had late-stage Lyme
and it was in her brain.
She just went downhill
very fast all of a sudden.
She couldn't pick up a knife,
pick up a fork,
couldn't write with a pencil,
and this all transpired
in the timeframe of overnight.
They insisted that she's making it up
and that she was gonna have
to go on psychiatric medication
if she didn't stop it.
Rock bottom, to me,
was that summer
before we went to see Dr. Jones.
She couldn't hold her head up.
She couldn't sit up.
She couldn't talk anymore,
and not knowing
if they were gonna keep her
on the medication,
'cause they kept saying to me,
"No, only 28 days,"
and I said,
"Well, I'm going to Connecticut,
and I'm gonna see this other doctor,"
and them fighting me and saying,
"Well, he's controversial,"
and something in me just
kept saying, "No, you're going."
The thing that gives me most joy
in treating
the children with Lyme disease
is seeing them get well and cured.
I don't consider it a job.
I consider it to be, more or less,
like a calling than anything.
My practice consists
of over 9,000 children
from every state in America,
from South America,
from almost every province in Canada,
and from every continent abroad.
The practice is growing
at the rate of five to ten
new encounters per day.
They have very complex,
serious illnesses.
However, it's nice to see them get well.
Some of the Lyme-literate physicians
are practicing medicine
that is widely outside
of the standards of medical care.
The small group of physicians feel
that one can diagnose Lyme disease
on clinical grounds alone,
not necessarily relying
on any laboratory data,
and then, furthermore,
long-term antibiotics
are the right treatment.
That has never been shown
in any double-blind,
controlled, randomized trial.
I've worked here for eight years,
and I've seen many patients come and go,
and I've seen the success he's had
in his treatment regiment.
Yes, we do treat aggressively,
but I think that's what works.
In a way, it's like
the perfect storm of diseases,
because of the timing
of a couple different events
in the history of medicine.
1980, the United States said it was okay
for government institutions
and universities to patent
and profit from live organisms.
So the Lyme disease organism
was discovered in 1981,
and all of a sudden,
there was the equivalent
of an Oklahoma land grab,
people looking under their microscopes,
patenting pieces of the organism,
so the people that are credited
for being the Lyme disease experts
no longer shared information
about a new, really dangerous pathogen.
They hoarded the information
because they wanted
to protect future profits.
You have professors,
especially in the biosciences,
are trying to take their discoveries,
often made on the federal nickel,
and take them private.
They patent them.
They start firms.
What's commercialize-able
is driving the research agenda
in too many cases,
not what's medically necessary
and what's medically useful.
The other thing that happened
was the rise of managed care.
Insurance companies and HMOs realized
that if they can get researchers
in universities
to define diseases and write guidelines
for diseases a certain way,
then they could help manage
the escalating medical costs,
and really, what this means is,
the people who previously
protected public health,
so, like, the CDC,
the Centers for Disease Control,
and the NIH and universities,
who didn't have any commercial interests,
all of a sudden, they were
partners with big pharma,
and their motivations completely changed.
We no longer had oversight
and checks and balances
in our scientific system
in the U.S.
It was rife with conflicts,
and just now, 20 years later,
we're beginning to see what happens
when you have unchecked
conflicts in medical care.
Okay, today is July 5th,
and Mandy's having
a little bit of an episode.
It's a feeling of being
trapped within your own body.
So it's like being wrapped up
real tight like a mummy
so you can't move anything
and then having tape across your mouth
so you can't say anything.
But reality is, you got to kill 'em.
You got to kill the little bugs,
because they're taking over.
No, no, I was okay.
I was adapting my life
to what was going on.
Now I want it back, so it's a war.
It got so bad after the tour,
'cause I really did some damage,
wasn't willing to admit it
to myself or anyone.
I'm in Seattle, Washington,
to seek Dr. Klinghardt,
one of the foremost specialists
on Lyme disease.
This is great.
I feel horrible.
It's perfect.
He's the one that I respect the most.
He's the one that I trust.
I've purposely not let myself
fall into the whole trap
of doctor after doctor
and treatment after treatment,
because I'm waiting for the right one.
Come on back, Dana.
Look at this guy.
- Hi.
- I'm so happy.
It's nice to see you too.
So talk to me first.
Give me all the information, -
- I need to be a better doctor to you.
So how do I explain seven years of...
Okay, so you've been ill for seven years.
Yeah.
What have you done in terms of treatment?
When I found out, I started antibiotics.
I did six months, and I was so ill,
and I just didn't see it as an answer.
Lyme disease is one of the many microbes
that has entered our system,
and I feel, as a physician,
that things are getting
to a degree that's serious.
We're watching other mammals die out,
and kind of think,
"Well, I'm glad that's not me."
However, as our environment
becomes increasingly polluted,
so do our bodies,
and then we'll grow the bugs in us
that are not compatible
with human life anymore.
So you have a tremendous amount
of inflammation in the gut?
The Lyme disease, you know,
leads to a suppression
of the immune system,
and then you grow these things in you
that we're always exposed to.
So I'm just gonna first do just a few
neurological tests on you.
So you have a little bit
borderline Babinski reflex.
That's an upper motor neuron sign.
It means, you know,
sort of that significant levels
of toxicity in the spinal cord or brain.
It is a way for me to stage
how close you are
to possibly developing, like,
a more serious thing,
like MS, you know.
Older people often get Parkinson's
after they've had
undiagnosed Lyme, you know,
or Alzheimer's.
Younger people tend to, especially women,
tend to get MS.
That really struck me today
how much I've been
in denial of this illness.
I mean, I've been feeling
really twitchy and just shaky,
a lot of neurological stuff that...
It's like I can't deny it anymore.
It's becoming very visible,
so I think I'm just in time.
You know, as a warning sign,
this is not a mild situation.
You know, sort of like... you have to do...
Within the next few months,
you have to resolve the issues
that you can resolve, yeah?
You have to promise that to me.
I'm ready.
Yeah.
It feels like just emergency.
It's just a panic in my body
that I've learned
to just walk around with.
Yeah, this is Dana.
I am moving into 314.
I finally feel like I can let go of it
and give it to somebody else to take.
There's someone to take my hand
and get me through it.
I really felt like that today.
I can't believe I moved to Seattle.
This is so crazy.
The spirochete that causes Lyme disease
is Borrelia burgdorferi
and related Borrelia.
The model that I have used
to try to understand
all of the possible things
that Lyme disease can do
is the syphilis model.
Stokes, Modern Clinical
Syphilology, 1945,
W.B. Saunders, publisher.
It gets into every organ system
of the body,
and there are chapters on
manifestations in the skin,
manifestations in dead babies,
manifestations in the bone,
manifestations in the brain,
and particularly, dementia,
'cause dementia in syphilis
was general paresis,
and general paresis
is as close as you could come
to a carbon copy of Alzheimer's disease.
The diseases are exactly the same.
If a spirochete, syphilis,
could cause dementia,
why couldn't the Borrelia spirochete,
over a long, long, long period of time,
cause Alzheimer's disease?
I extracted DNA from ten
Alzheimer brains that came
from the Harvard University brain bank.
These are the Harvard brain
DNA extracts in this tube.
Using molecular methods,
I was able to find the DNA
of the spirochete
which causes Lyme disease
in seven out of ten
of the Alzheimer brain specimens
that we received from Harvard.
That's incredible.
The results of the experiment
could not have been predicted
in anybody's imagination.
When seven Alzheimer brains
gave me, essentially,
the same thing,
which is part spirochetal,
part human, linked up in one molecule,
I about fell off my chair.
If my dream comes true someday,
that will redefine
the practice of medicine,
and that will redefine the lives
of millions of people.
Since spirochetes are the cause
of neurodegenerative diseases
in syphilis,
could it be
that this spirochetal infection,
Lyme disease,
is partly or wholly responsible
for some of the neurologic
degenerative diseases we face
in this century?
Alzheimer's, Lou Gehrig's disease,
Parkinson's disease, multiple sclerosis,
those are named conditions
for which no cause is now known.
We never had a...
In the last five years,
a single MS patient,
a single ALS patient,
a single Parkinson's patient
who did not test positive
for Borrelia burgdorferi,
not a single one.
About three years ago,
I became ill with a disease
that was ultimately thought
to be ALS or Lou Gehrig disease
and had prepared to die
within about two years' time.
My neurologist tells me
that I was progressing so rapidly that,
without the diagnosis
of Lyme disease and antibiotics,
I would have continued
to decline, losing strength,
eventually becoming bed bound,
eventually unable
to talk or swallow or breathe,
and would have died
in a matter of a couple years
just like anybody else with ALS,
so I was started on high doses
of intravenous antibiotics
only to see what would happen
with no guarantees.
To our amazement, within a month,
my energy improved,
so instead of being exhausted in an hour,
I could be up and about
and active for four or five hours.
We're now two years out,
and I find that if I go off
of the antibiotics,
I lose stamina,
and I'm not yet back to my full self,
but the change is absolutely dramatic.
I said,
"I'm not getting tested."
I said, "There's no way."
"There's no way I have Lyme,
because I've been told
by the best doctors
that I have Parkinson's."
My name is Ben Petrick.
Baseball was kind of, like, my life.
I went from being
a gifted athlete to, you know,
there's times when I...
It's hard to put a shirt on.
I've been out of the game now
for almost two years.
When you're diagnosed
with a disease like Parkinson's,
it's like a slow death sentence.
That's kind of what you feel like.
There's no cure for it.
It's just kind of a slow deterioration
of your former self.
Recently, in the past month,
I have been tested for Lyme disease,
and the test came back positive,
and so I've gone and seen
Dr. Martz in Colorado Springs.
We're scared.
My wife and I are sitting there
going, "Do we want to do this?"
'cause they're talking about
sticking something in my vein
that's gonna go into my big artery
that's gonna go into my heart.
I'm going, "What?"
So, you know,
I said to Dr. Martz...
And Dr. Martz is phenomenal,
and his story is just miraculous...
And I said, "Should I do this?"
And he said, "Ben, if you were
a part of my family",
"I would chain you down
and not let you leave here
until you have this done."
Six months into the Lyme treatment,
it's, without a doubt, better.
There's been no question in my mind.
I feel like I'm getting back
to being myself.
Compared to what I had been
in the past, it's...
It's... I mean, I think it's night and day.
Okay.
What I'm doing right... r-right now
is sitting in my wheelchair.
Sean doesn't like to videotape it.
So we've gotten
in a couple tiffs about that,
'cause I think it's important
for other people to see this.
There are times when I feel
like I need to get away,
not that I'm trying
to run away from her, but that...
It's just too much.
Sometimes I need to go and do the things
that I used to do before this started
just to feel like,
"Okay, that life
is still there."
You know, I mean, just like her...
That feeling's there
for me too, and I just can't.
I know.
We were told it was gonna be a long road.
That doesn't mean that I don't
worry about it driving a wedge.
Doesn't mean that I don't think that,
maybe, at some point,
Sean might change his mind.
Now.
All you've got.
Just all you've got.
Come on.
There you go, and back in.
Come on. Come on. Come on.
Come on. Come on. Come on.
I'm extremely nervous
about having this child.
All of the tests that we have to do,
the fear that he'll come out
and he won't be able to breathe
or there'll be something that's
happened from the Lyme infection
that we don't know about.
It is very, very scary.
Elise, more, more, more, more,
more, more, more, more.
Nice.
Yeah, yeah, okay, okay.
Elise, push.
Here comes your baby.
- It's okay.
- There you go.
Is he breathing?
Look at his hands moving.
Placenta sample.
Here.
Look, I'm right here.
Hi.
My God. Hi.
I can't believe it.
We would like to welcome you
to John F. Kennedy
International Airport, New York.
The local time here
in New York is 9:30 a.m.
Well, here we are
in East Hampton, New York,
a place I probably never would have seen
if I hadn't gotten Lyme disease.
I've come here
all the way from California
to see one of the top
Lyme specialists in the world,
and I've been coming here
for the last four years.
Are you nervous riding with me?
You should be.
As a park ranger before Lyme,
I was a highly confident person.
What Lyme did to me is,
it sort of removed
my ability to multitask.
Now I can sort of do one thing at a time
if I really focus on it.
See, we're not where
we should be right now.
Do you notice this?
That's a really bad sign.
Frustrating, you know?
It's frustrating
to be this far down the road...
Now it's been almost eight years...
And to still be not back to normal.
When did you start
the combination therapy?
Last year, right?
Yeah, I've been on it for a year.
Are you still improving,
or have you hit a plateau?
You know, the truth is,
I've hit a plateau.
How much antibiotic is enough?
How many symptoms that are still present
reflect an active, ongoing infection
versus just damage
that's gonna be there forever?
Somehow, the spirochete can learn to live
within the body and not be killed.
It can hide from the immune system.
It can hide from the antibiotics,
and both at the same time,
and there are patients who sometimes
are in open-ended years of therapy
because of this very problem.
We have not been able
to demonstrate the persistence
of the bacteria,
so to treat for months and months
is really based on guesswork,
on conjecture,
and not based on any scientific data.
If I had not been able to find doctors
who would soak me
in antibiotics for years,
you wouldn't be talking to the guy
that you're talking to right now.
The folk myth is somehow that
antibiotics are bad for you.
I just have to say,
they're certainly not bad for you
if you've got a fatal infection.
This disease has taken over my
whole life.
It's been a horrible journey.
Every day, driving home,
I would think of driving a car
off the road or something like that.
I said to my mom, "You know,
it would be okay with me"
if I didn't wake up this time."
I said,
"God, take me home tonight."
It was not even a request.
It was a demand.
What's gonna happen to me?
"I don't want to die."
I am scared.
I'm very sad,
'cause I don't know what to do.
I'm going downhill,
gradually down, down, down, down, down.
The worst part is knowing
that you're just not a normal person.
Chronic Lyme disease,
it's kind of the disease du jour.
There's no evidence that I can find
to support the concept
that there is
a chronic Borrelia infection
after treatment.
That kind of situation
has been referred to
as post-Lyme syndrome
or post-Lyme symptoms.
Those symptoms may be due
to the aches and pains
of kind of daily living.
The Infectious Diseases
Society of America
just published
their Lyme disease diagnosis
and treatment guidelines,
and it's been a huge disaster
for the Lyme disease community.
They say that Lyme is easy
to treat and easy to cure.
They're saying that two weeks, typically,
will cure most cases of Lyme,
and they say that chronic Lyme
doesn't exist.
If people have symptoms
beyond one two-to four-week
dose of antibiotics,
they have something else,
and they send them to a psychiatrist
or give them some pain meds
or some steroids
and send them away.
If you look at the new IDSA guidelines,
it's a very threatening document.
It's very restrictive.
So it almost was designed
with a purpose in mind
to restrict the treatment of Lyme.
A handful of people
are pretty much the gatekeepers
for information about this disease.
Out of 400 references
that they posted
at the back of the guidelines,
half of them were based on articles
that the panelists
or people in their labs
had actually written,
so it's not like
they went through and looked at
the whole body of Lyme research
to come up with the best recommendations.
They looked at a small group of articles,
about half of which
were written by themselves.
These guidelines are based
on the best scientific evidence that...
From more than 25 years of study.
It completely ignores
a worldwide body of literature
that is in contradiction
to what they're saying.
We're not gonna ignore good science,
but the science isn't there.
We had begun deliberations,
and we were going to go over
the late and chronic stage.
We never got to discuss late
and chronic Lyme disease.
There seemed to be pressure from the IDSA
to put out something,
even though we couldn't agree,
so what happened was,
Dr. Wormser did take over
the chairmanship on the guidelines
for Lyme disease,
and we never met again.
We just said, "Here are the guidelines",
and you can sign them
and agree or not."
They're written in almost legalese terms,
like this could be a document
used in court cases,
maybe against physicians,
or maybe for insurance companies
to justify cutting off treatment
to their patients
'cause these are the guidelines.
Really, those guidelines
reflected the idea
of one or two people,
but they've been misused
by insurance companies
who don't want to pay
for treatments because
that particular guideline says,
"We don't know
if chronic Lyme disease exists."
Well, the insurance company
has refused to pay
$10,000 worth of bills
having to do with my trips
to see Dr. Burrascano.
They have now required me
to see another doctor.
This particular doctor
apparently is a fella
who works mostly
for the insurance company.
What he'll do will be
to cite the IDSA position
that there's no such thing
as chronic Lyme disease
to support a conclusion
that the insurance company's
already made about me.
They don't want to pay.
Rather than make the assumption
that two to four weeks
of antibiotics is enough...
Where did anybody get that idea
from an infectious disease?
Tuberculosis is not treated
in two to four weeks.
Hepatitis, a year to treat that.
HIV, indefinitely.
So we're not talking about new concepts.
We're talking about concepts
that have not been,
for whatever reason, applied.
This doctor's controversial
diagnosis and treatment
of Lyme disease
with powerful intravenous drugs
could very well cost him
his medical license.
The evidence will show
that Dr. Jemsek believed
the IDSA guidelines
to be flawed, to be wrong.
I respect the IDSA tremendously.
I belong to the IDSA.
The Lyme philosophy
is run by about 12 people
who have been doing...
The same 12 people for the last 15 years,
and they haven't really changed anything.
I tried to influence the IDSA
through a series of letters
with the president and the chairman
of the guidelines committee.
We pleaded with them
to open up the process
about Lyme guidelines.
He has been working
really hard for the last year
to try and get the IDSA board
to listen to his suggestions
for the treatment of chronic Lyme,
and now he's before
a medical board review,
and it makes you wonder,
you know, is this a retaliation?
Furthermore, for each of these patients,
Dr. Jemsek prescribed
a course of not oral
but intravenous antibiotics
to be administered
to the patients for months on end.
Long-term antibiotics
provide no additional benefit,
and it's not that this is safe.
There are many complications
to long-term antibiotic therapy.
I was a patient of his for 7 1/2 years,
diagnosed with Lyme's disease,
wholeheartedly believed him,
and never had Lyme's disease.
My wife did not sign up
to be a test subject.
She was told she could be cured
to the disease that she supposedly had.
Three years ago,
you wouldn't have thought
she'd live another two months.
He literally saved her life.
No question about it.
If I hadn't seen Dr. Jemsek,
if he wasn't available,
I don't know that I'd be here
talking to you.
If Dr. Jemsek
doesn't get cleared,
there's a message that's gonna be sent
to the other doctors in North Carolina
that it's not safe
to take a Lyme patient on
and treat them.
We can't have that happen.
I don't know what we would do.
It is difficult for doctors
who want to stand up
and help these patients
because is it a political disease
and an economic disease
as much as it is
a bacterial-borne infection.
My office was stormed by
the Board of Nurse Examiners.
I got a letter around 2000
saying that I was a subject
of an investigation.
A complaint went in from a physician
to the Virginia Board of Medicine
stating that I was following
unusual practices in treating
Lyme disease patients.
Here we are in Raleigh, North Carolina,
and we're on day two
of the Jemsek trials.
We're going.
Dr. Jemsek's license
is suspended for one year
stayed in the conditions
to be determined.
That concludes the hearing
in this matter.
A Charlotte doctor must
surrender his medical license
for the way he treats Lyme disease.
Less than an hour ago,
the state medical board ruled
that Dr. Joseph Jemsek
acted inappropriately
when treating some patients.
The board suspended
his license for one year.
- I thank you all.
- Well, thank you.
Thank you. Thank you.
Medical boards don't act on their own.
They need a complaint
to initiate an investigation,
and we've been told by the medical boards
that the great majority of complaints
don't come from doctors or patients,
but they come from insurance companies
trying to get rid of doctors
who cost them a lot of money.
There has been for many years
a controversy
within the medical community
about how best to diagnose
and treat Lyme disease.
We allege that Dr. Jones
prescribed an antibiotic
to a patient he did not know
and had never examined.
As a mom, my kids were sick.
I left no stone unturned.
I finally found somebody that recognized
what their problem might be.
It was treated, in my opinion,
appropriately,
and my kids are better now because of it.
This whole thing
is kind of ridiculous, I think.
It was really nothing more
than a witch hunt
on behalf of my ex-husband.
He called me,
and he said he was going
to lodge a complaint
against every doctor
that I took the children to
unless I agreed not to bill him
for half of the medical care.
How could my dad have done this?
He said, "Well, you don't
have Lyme disease."
Dr. Jones is just making it up
so he can get money,"
and I thought,
"You know what? No, he isn't,"
because I was always sick,
and then, when he told me,
my brother, and my family
that we had Lyme disease
and we got treated for Lyme disease,
we got so much better.
Did you testify contrary
to Dr. Jones' opinion
in a criminal case
in the last several years?
Yes.
Did you ever call him a "nut" in public?
Patients develop physical complaints,
but it's got a psychological basis.
Dr. Jones is the best
pediatric Lyme doctor
in the United States,
so the implications for me
is that if my son's Lyme comes back
or if we contract it again,
then what you'll be taking away
is the one person that can truly help us.
What kind of response would you get
if this was a kid with cancer?
Everybody and their mother
would say that this is inhumane.
Dr. Jones is not
the heart of the problem.
I think the opposition,
they're going to use him
as an example if they can,
perhaps to frighten other doctors
so that they won't want
to get involved in care.
I was reviewed by the investigators
for four years.
As long as I'm not too well-known,
it's okay to do what I do,
but if I would become very
well-known or very outspoken,
I think that I would probably
lose my medical license.
It got to the point
where I would tell people,
"Don't tell the office you're
coming in because of Lyme."
Let's leave this alone.
Just let us do our work.
If you don't want to treat that stuff,
that's fine,
but you can't make it go away.
It's not going away.
Dear Lord and Heavenly Father,
thank you for this meal,
and help it nourish our bodies
and help us advance your kingdom
and just let the truth prevail
for Dr. Jones
and help him help others,
in Jesus' name, Christ, amen.
We're here today to remember Brett Paul.
- Doris Grade.
- Robert Baird.
Geri Teitelbaum Fosseen.
I think it really points out
how dangerous this illness is.
We're the heartland of the nation,
and our people are dying here
from Lyme disease.
My son was 31 years old,
and he died from Lyme disease
because no one would treat him.
I keep wondering
what else I could have done.
Should I have taken her to Europe?
Should I have taken her somewhere
where somebody would have done something?
But we don't seem to care
in this country.
They just didn't try to help.
When we tried to get medication for her,
it was almost impossible,
because the medical profession
is afraid to give medication for this.
If I was asked whether
Lyme disease could be fatal,
I would say not in my experience
and not suggested by any
of the existing literature.
My husband died
two months ago of Lyme disease.
It's specifically
on his death certificate.
By the time they
figure it out, it's too late.
The last words my daughter spoke to me,
her last words to us,
"Mommy, they're gonna kill me,"
and they did.
I am one of the many
that will speak for her now.
She shouldn't have had to die.
I'm angry at the fact that
there's nobody there to help me.
I'm angry at the fact that
this disease is being ignored.
I'm angry at the fact
that there's a Hippocratic oath out there
that these doctors
are supposed to heal me,
and they ignored me,
and they put a price on my life,
which was nothing.
Nobody was there to help me, and instead,
they blamed it on me by saying
it was all in my head.
We were having dinner,
just, you know, watching TV,
and she started having a reaction.
It was a mild seizure at first,
and it progressively got worse.
She was having problems breathing,
and then stopped breathing all together.
The first doctor that we met with,
first statement was,
"Lyme doesn't do this.
That's not what you have."
Three of the doctors all asked
if she's seeing a psychiatrist
because they all just assumed
it was in her head.
My body had been
losing ability for a long time,
cognitive function,
physical ability to do things,
and I'd been keeping it down,
you know, working around it,
adjusting my life, so you know what?
I don't want to hear it, and I'm sorry,
but I have been dealing with it,
and now we have been dealing with it.
That's ten years.
That's a long time to be patient.
I mean, it's frustrating
to hear doctor after doctor
after doctor say either,
A, "Lyme doesn't exist,"
or, "Lyme doesn't do this," or, you know,
"Well, what you're experiencing
isn't Lyme."
It's almost like they've been
trained or programmed
that this is what they're
supposed to say.
It's really madness, you know?
There's something wrong.
I don't hear it in any other disease,
never heard it in my life.
So there's something funny.
I don't know what
that something funny is.
Attorney General Blumenthal
of Connecticut
has taken the historic move
of starting an investigation
into the panel members who wrote
the Infectious Diseases
Society of America
Lyme Treatment Guidelines.
He believes that they have conflicts
that may be corrupting their advice.
Our investigation concerns
whether the antitrust laws
have been violated, purposefully or not,
by these guidelines.
They may restrict consumer choice
with tremendous implications,
not only for patient care,
but also the economics
of insurance coverage.
Ideally, authors of medical guidelines
should have no financial conflicts
when they make their recommendations,
but if you look at the current
IDSA guidelines' authors,
6 of 14 of them or their universities
hold patents associated with Lyme disease
or its co-infections.
4 of the 14 have received funding
from Lyme or co-infection
test kit manufacturers.
4 have been paid by insurance companies
to write Lyme policy guidelines
or serve as consultants in legal cases,
and 9 of the 14 authors
or their universities
have received money
from Lyme disease vaccine manufacturers.
The fact that 9 out of 14 authors
have a direct conflict of interest
with somebody who's involved
in manufacturing products
for any aspect of the disease
is completely outrageous.
The Infectious Disease Society of America
should establish a hard-and-fast rule
that the people who serve
on guideline-writing committees
not have any ties to any manufacturer
that has a stake in the outcome
of those guidelines,
period, end of story.
There are a lot of people
in the academic community,
I think, that know
these people are wrong,
but no one will speak up,
so, you know, at what point
will people say
the emperor has no clothes?
You know, when will
the voice of the people
finally reach a level where
the truth will come out?
I mean, I think the truth
will eventually come out,
but how many more people are gonna suffer
before the truth comes out?
As citizens, we ought
to be astonished and alarmed.
Every year,
there's thousands and thousands
of people suffering.
This is a total disgrace.
Write to the IDSA.
Chronic Lyme disease exists.
Good afternoon, everybody.
Continuing hearings on the case
of Dr. Charles Jones.
He had their records,
which did not confirm the history
that the mother had given.
He'd been told that Nevada providers
saw no reason to prescribe an antibiotic.
Nonetheless,
he prescribed for both children.
I hate to sound conspiratorial,
but I think I have a right to be.
I think that it would be
advantageous for me
as a Lyme-literate physician
and as the only pediatrician in the world
who treats Lyme patients
to be out of the picture.
There's no charge
that these patients were harmed.
In fact... how do we get past this
big elephant in the living room
that these patients
were treated successfully
and are now doing very well?
I'm 78 years old.
In the worst scenario, I lose my license.
I don't think they're going to let it go.
I know that.
Bye, Dr. Jones.
All I can do to help.
Thank you.
We all love Dr. Jones.
He's like a father to me.
If they succeed
in taking his license away,
I just don't feel that he's gonna feel
like he needs to be here anymore,
and that's very sad to me.
I don't know where my daughter would be
without Dr. Jones.
We call him the Lyme pope.
I was probably the 30th individual
who had been called
before a medical board
for treating persistent Lyme disease.
They decided
to suspend my license with stay,
which means
that I was allowed to practice,
but the damage was done.
Within a few weeks,
Blue Cross Blue Shield of North Carolina
cancelled our contract,
and then they sued me for $100 million.
Financially, I've lost
essentially everything.
I've lost my clinic.
I've sold the building,
and in a couple months,
I'll be closing the practice.
They had the vision loss,
and they were starting
to lose their hearing there.
They were really young
when they were losing it.
Christy, my oldest child,
died 6 1/2 years ago from Lyme's disease.
She was 19 years old.
Courtney is 25 years old.
Can you say "doctor"?
Say "doctor."
Doctor.
I'm glad somebody stepped in
and helped you,
that you found the right people.
Yeah.
Hi, there, sweetie.
How you doing?
You made significant progress.
I'm delighted with the fact
that your multiple neurologic symptoms
are so much better
and that you're...
You have control of your body.
You can live in your own skin.
From someone who came unable to swallow
and in, you know, an altered...
Bedridden.
Bedridden, altered sense of smell,
and uncontrolled tremors and seizures
and couldn't stand up and... gosh.
- I'm looking good.
- You're looking good.
Well, my greatest fear is that, you know,
like some of the couples
out there who have Lyme,
that both of us will be impacted by it,
and that he would have gotten it from me.
You know, he's complained about
a lot of aches and pains.
I'm not old, but I'm getting older,
and there's, like...
There's things that I'm feeling
that probably happen to everybody.
Like, one of my eyes right now...
I got to go to a vision guy,
'cause one of my eyes is blurred out,
and I've always had 20/10 vision.
I mean, all of a sudden, this eye...
And it wasn't... it was, like,
an overnight thing, that suddenly,
I'm having issues with blurry vision
with my eyes, getting headaches,
which I account
towards the blurry vision,
but bottom line...
Mono-like symptoms.
He goes horizontal, he's out.
Just feeling lethargic.
I won't tell you that it's not
in the back of my mind
that it is possible.
Lyme is a distant cousin to syphilis,
which is obviously sexually transmitted.
Now, if Lyme were found to indeed be
a sexually transmitted disease,
that would change the landscape
of the whole argument.
The only way the Lyme disease
is transmitted
is through the bite of an Ixodes tick.
We know about Lyme disease.
It's something
that we have a good handle on.
That's really the bottom line.
Jared is a very happy baby
that just wakes up happy,
laughs all day, giggles.
He just loves life.
Jared's test came back positive
for the Lyme antibody,
which means he may be infected.
He may end up getting very sick
someday because of it,
but we're very lucky right now.
He's doing well.
I don't want to say that.
I don't want to say he has Lyme disease.
I don't like to use that term
right now...
not yet.
The controversy in Lyme
disease is a shameful affair,
because the whole thing
is politically tainted.
Money goes to people that have,
in the past 30 years,
produced the same thing:
nothing.
Lyme disease is a significant disease
we don't have a cure for.
And that we don't have accurate testing,
that should scare people,
'cause how do you know if you have it?
How do you know how to fix it?
How do you know what to do?
And by the time you're
so disabled by the disease,
you're in a panicked state.
You want help.
It doesn't matter.
You'll pay anything
to get your health back,
and the fact that doctors
who are willing to help you
and are legitimate doctors
willing to put their license,
their life, on the line to help you,
and that it even has
to come to that, is scary.
Dr. Burrascano,
good luck in whatever you do.
You're a wonderful doctor.
Well, recently,
I decided to close my practice.
The political climate
for physicians treating Lyme
is very difficult nowadays.
This is a doctor who was hauled before
the New York's medical review board,
I think on two occasions,
and threatened
with removal of his license.
You know, I look at these charts
and I think of the people
who've gone blind.
They've lost their hearing.
They are in wheelchairs.
I mean, it's terrible,
and especially because so many of them,
it could have been prevented
if they were properly treated
in the beginning.
That's what kills me.
Man, such a waste.
Look at all this.
Such a waste of people's lives,
of money, resources, time,
and all it takes is knowledge.
I bet you that if these people,
all of them,
had seen a Lyme-literate doctor
in the very beginning of their illness,
I'm sure more than 1/2,
if not more than 3/4 of them,
would never have gotten
to that stage ever.
Lyme can go in so many directions.
There's the people
that are hit really hard
that are actually crippled
and handicapped.
They're very visibly ill.
And then there's people like myself
that, you know, are invisibly ill,
like the walking dead.
Now there is a possibility
of getting my body back.
I'm feeling the best I've felt,
probably, in years.
I feel like my brain is back.
I have more energy.
You know, I feel much clearer.
This is the first bit of hope I've had...
real hope, in... for this whole time.
It's almost like
I started building a bridge
to the other side,
and I kind of was going that way.
Now I'm looking back like,
"I'm gonna go walk back
into my body and start again."
It's daunting.
I met a lovely gentleman
who's been really supportive,
and... I don't know.
For the first time, it just...
It feels so good
to have someone's support.
I don't have to go it alone anymore.
I can't tell you how excited I am.
This is just a marvelous,
marvelous new concept.
Up until this point, we had a hunch
that the bug had to be
hiding somewhere in the body
in a form which we couldn't really
put our fingers on
and we couldn't really find
with a microscope.
One night, as I was looking
at a culture of Borrelia,
I saw a large colony of organisms
protected by a gel-like substance,
and as I was reviewing the pictures,
it became clear
that this was very reminiscent
of what they call a biofilm.
The idea of a Borrelia biofilm
is very, very powerful,
because biofilm explains in that one word
why some cases
of Lyme disease are chronic,
why they're hard to treat,
and why, after antibiotic treatment,
they may relapse,
because biofilms are, by definition,
chronic, difficult to treat,
and capable of relapse.
It's absolutely revolutionary.
The major medical journals have published
that chronic Lyme disease is not real
and it's a psychosomatic condition.
The biofilm model dismantles
that entire argument.
The patients were right all along.
It's a great opportunity to say,
"Aha, they were right,"
and they were right.
They were right.
Wait up.
This disease nearly destroyed my life.
It got really bad.
It got really bad.
I'm happy to have my family still.
I'm thankful to them for staying with me.
I'm back.
I'm glad to be here.
If I'd stopped treatment
after even the first year,
I never would have made it
anywhere close to where I am now.
Mind you, I had to fight for what I got.
In the current system,
I'd get maybe
a month of treatment, that's it.
Everything you have
is what you're going to have
for the rest of your life,
and yet all the improvement
that I've experienced
happens after the third year
of treatment.
And then there's the phase where
I start to get my life back,
and that's the phase I'm in now,
and it's like magic.
I'm so glad to be here.
I can't even say.