1
It's almost like I started
building a bridge
to the other side.
Now I'm gonna go walk back into my body
and start again.
It's daunting.
We were told it was
going to be a long road.
It doesn't mean that I don't think
that maybe at some point,
Sean might change his mind.
Push. Here comes
your baby.
There you go.
Jared's test came back positive
for the lyme antibody.
He may end up getting very
sick someday because of it.
My life was so uncomfortable to be in,
that I don't know that I
would've wanted to be here,
had I not had stronger family
connections, you know.
She couldn't hold her head up.
She couldn't sit up.
She couldn't talk anymore.
They insisted that she's making it up.
We allege that Dr. Jones
prescribed that antibiotic
to a patient he did not know
and had never examined.
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.
They decided to suspend my license.
Financially, I've lost everything.
There's a message that's gonna
be sent to the other doctors,
that it's not safe to
take a lyme patient on.
So there's something funny.
I don't know what
that something funny is.
At what point will people say,
the emperor has no clothes?
How many more people are gonna suffer
before the truth comes out?
A common disease
appears to be much more
common than first thought.
About 30,000 cases of lyme disease
are reported each year.
The centers for disease control now say
the real number of cases
is more like 300,000.
The CDC put out a press release,
saying lyme is 10 times more common
than the lyme statistics say it is,
but we kind of already knew that,
and what we would like to have
seen in that press release
is, here's what we're doing about it.
We may be patients, but
we are not patient anymore.
We've had enough.
We didn't have to work outside...
It stopped raining so
you get to work inside?
We were living in Connecticut,
and we had to find a place that was safe,
that was tick-safe.
We were angry, we were fearful,
and here we are in Hawaii, in paradise;
and truly, it is paradise for us
regarding lyme disease.
Last time we met, we were sitting
and watching a healthy little boy.
I didn't like to use
the word lyme disease,
however when he was about three,
it was pretty evident
that he was getting sick.
One day, we got into the city
and we walked 10, maybe 15 minutes,
and my son turned to me,
Jared turned to me
and said, I'm too tired,
mommy, I'm too tired.
I can't walk.
So, I had to use the word,
that my son had lyme disease.
In utero, fetal transmission
of lyme disease to a fetus
is something that has been
of concern to patients.
We've looked carefully at that.
There have been numerous studies.
There's not been one documented case
of congenital lyme disease.
My story proves that it's not anecdotal,
that it is happening probably every day.
Children are being infected in utero,
and that if something isn't done,
we're gonna end up with
very, very sick children.
Good afternoon, everybody.
Continuing hearings on the case
of Dr. Charles Jones.
The two children who were subject
of the initial allegations
are doing well.
They are free of tick-born diseases,
and they're thriving.
In my estimate, I've healed
over 18,000 children.
The main effect of
the licensing board actions
has been financial.
It's been a horrendous expense
and continues to be so.
I think they must be touching
near a million dollars right now.
I'm going into my seventh
year of bankruptcy.
I'm still in litigation
with blue cross blue shield,
and unfortunately, they have really
just no motivation
to bring this to a close.
Dr. Jemsek's license
is suspended for one year
and the conditions to be determined.
After I was forced
to leave north Carolina
and move
to Washington, D.C.
I never really lost my license,
but I wasn't allowed to practice medicine
the way it ought to be practiced.
And then I end up owing
millions of dollars,
and that just wiped me out.
I lost everything.
Sean and I got married in 2005,
and then I guess my
treatment was complicated.
It made me scared for the
future of my relationship,
that my spouse was gonna go
because my spouse
couldn't take it anymore,
or this was just, like, too much.
The last two years of our relationship
weren't doing very well at all,
and so Sean and I ended up
getting a divorce.
He probably wanted something
a little less stressful
than lyme, as did I.
You know, we didn't really know
what we were getting into.
You're like, man, we just
got married, you know.
Bam, I'm in the hospital,
and bam, this is happening,
and bam, that's happening,
and you just feel like
you're in the water,
and it's up to your head.
The problem with lyme disease
is nobody really knows what it is.
They've heard something
about flu-like symptoms,
and if a person is in bed all day
because they can't stand bright light
and they can't even go outside,
they think that this is malingering.
So there isn't a broad
kind of community support
for the ill family.
There wasn't for us.
This had a tremendous effect
on my wife and on my children,
and this family is no more.
There was a divorce,
and the family has gone
its separate ways.
After "under our skin,"
I was unable to continue
working as a medical doctor.
I was unable to remember
details of my daily work.
I wouldn't be able to remember
medical terminology.
It was very precarious.
It was very difficult.
He wasn't able to be functioning
the way he used to function.
I love you, my love.
See you later.
We were aware that it
was going to be necessary
to have a complete panel of lyme test
because of my exposure over 30 years.
These are the Harvard brain
DNA extracts in this tube.
The tests did not come back
with evidence that I had lyme,
but the doctor who was taking care of me
came to a preliminary conclusion
that it might be frontotemporal dementia,
and that the usual pattern
of survival is 3 to 5 years.
I was thinking about
not continuing practice.
You know, the licensing board
wins, the kids lose,
and while I was making this decision,
a child came into the office,
and he had never talked.
One of the times he was running around,
he came up before me, and
I put my hands on his cheeks
and said, "I hope I have the key"
that can unlock your brain,"
and he's off running,
and I thought, I'd spoken to the air.
He came back four months after
being diagnosed and treated,
walked in the door,
didn't run in the door,
and came right in front of me
and put my hands on his cheeks
and looked me directly in the eyes
and said, "thank you
for giving me the key"
that unlocked my brain."
And I said, that's that.
I'm gonna stay.
When I got out of the wheelchair at Dr.
Jones' office,
it was almost like you have
your life taken away from you,
and then it's like getting
your life back again,
but it's not the same.
You appreciate everything more
and just being able to walk down
the stairs any time you want,
go anywhere you want.
I'm still on medications,
but I'm doing a lot better.
I'm in college.
I'm studying biology,
and I even have a boyfriend,
which I never really
thought was possible.
Right now I'm working
as an e.M.T.,
which is an emergency medical technician.
I drive the ambulance
and take care of patients
in the back of the truck.
At least eight out of 10 times,
a person is, like,
"wait, you can't lift me."
All these moments where
I'm driving the ambulance
on a call or something,
and all of a sudden, I'll be like,
my gosh, I'm driving an ambulance.
How did this happen?
After so many years of being sick,
I was resolved and resigned
to leaving my body.
The idea of coming back into my
body seemed really daunting.
I thought I would either die
or live with this pain forever,
and I'm just so amazed
that I can think clearly again,
and I have pain-free days.
Having the support that I needed
made it all possible.
Really.
It's nice to see you, too.
So, you know, layer by layer,
piece by piece, I came back in.
I'm back.
I'm in my body.
I'm not afraid.
That's not true.
I am afraid.
But I know I can deal with it.
After three years of
treatments in Seattle,
I moved back to the bay area, back home.
I married Tim,
and I've been maintaining my health.
At the clinic, I was recognized often
in the waiting room, and I got to be
an inspiration to people, a hero.
Thanks, guys.
It was a bittersweet time
because, coming home,
everything's the same here,
but I was different.
I miss that community,
and I'm trying to recreate that now.
The comparison between the Mandy
that you saw in the documentary
and the Mandy that's here now,
it's just kind of night
and day difference.
I haven't had to have
any more antibiotics
or drugs or anything.
Drug
that experience just made me
want to go into healthcare
and, you know,
try to change things a little bit.
And I got a job as an
intermediate care nurse,
so I deal with some heavily
compromised patients.
I work 48 to 60 hours a week.
I had one patient, and
they were talking to me,
"yeah, and I was watching
this show on pbs,
and it was about lyme disease,"
and they had no clue
that I was in that documentary.
And so they're talking,
and they're talking,
and then they're kind of like,
"how do you know so much
about lyme disease?"
And I'm like, "saw
the same documentary."
Since nursing school,
I sat for my boards.
I went to Paris.
I went to Italy.
I lived in Costa Rica for a month
helping children.
So, now my next goal is
I have to get really fit.
And that's gonna hurt.
I'm really not looking forward to that,
but...
That's the next goal.
She's used to sharing her life
with the fans of "real
housewives of Beverly Hills,"
but model yolanda foster
has been opening up
and sharing even more lately
about her difficult battle
with chronic lyme disease.
I was struggling for about two years
before I finally was diagnosed.
No joy luck for best-selling
author Amy tan.
Lyme disease nearly killed her career.
Somebody asked me the name
of the book I was working on,
and I couldn't remember.
Another side of Daryl
you might not know about
is he's struggling,
despite all of that money,
with something called lyme disease.
You find out you have it, and suddenly
you're down on the floor.
This is serious stuff.
Angeli vanlaanen.
You probably don't recognize her
without slashing some
serious powder there.
I did battle lyme disease
for over a decade.
I mean, this is unbelievable,
from lyme disease to going to sochi.
I was asked to speak
at a lyme rally in Norway,
and I was invited to stay
with adventurer Lars monsen,
who apparently is one of
the most famous people
in Norway today.
Jordan Fisher Smith, welcome.
You are kind of the equivalent
to Lars monsen in the states, right?
Well, we both had been
working in the outdoors,
in nature all of our lives.
And you have another thing in common,
'cause you also have been
infected by the lyme disease?
Unfortunately.
Now I see the same thing
happening in Norway,
so I'm here to help.
When I got ill, I understood
this is just like a long expedition.
You have to have the same mindset.
- So true.
- Make the same choices.
You know, look ahead
and just choose what thoughts to think.
I think the one thing that being ill,
and, not just with a tick bite,
having a dream and keeping
it through the illness,
that's an important thing.
Don't give up your dream.
I always expected to get better,
meaning that I couldn't imagine
living the way I was living.
The experience of living in a lyme body
is the worst misery I've ever suffered.
It turns your body
into a torture chamber.
I think that I had one attribute
that might have saved me,
that I was trained
as a ranger for 21 years
to recognize a deadly situation
and then being absolutely relentless
in fighting my way out of it.
Everybody's asking me,
why are you better?
What worked for you?
What drug exactly did you take?
The answer I almost always give people
is, pfft, I took all of them.
I was able to stop taking
long-term antibiotics
almost seven years ago now.
The greatest problem that
I see lyme people having
is that they're set in
a public health setting
that is doing its best
to deny them treatment.
You're gonna have to fight for yourself
while feeling awful and not
feeling like doing anything,
and this was certainly
my greatest challenge,
was continuing to fight for myself.
When I shared my story
in "under our skin,"
I sort of became this poster child
for lyme disease, and that frightened me.
Because in some ways,
it kept me in my story,
and people felt like they wanted to share
all their symptoms with me.
And sometimes it would overburden me
when I was still really sick.
So I was resistant to
talking about lyme disease
for about five years
because I didn't want
to talk about this bug
and this hideous illness.
I wanted to talk about
what it means to heal
and what that journey looks like.
I think that's where I get healed,
when I can help people
that have gone through
the same thing that I have.
So, with "lyme less, live more,"
we really wanted to bring
people into our world
and really meet some of the people
that have been so
inspirational in our journey.
We're so lucky and happy
to have Dietrich here today
to answer a lot of your questions.
If you have lyme disease,
by my definition,
it means also you belong
to a tribe here on the planet
that is more conscious
and more sensitive,
and also more likely to do
something once you recover
that will be a benefit for all of us.
I think we need to look
at people with lyme disease
or chronic illness as indicators.
They're indicating the
problems in our environment,
in our world, and this
disconnection we have.
The illnesses that we see now,
almost all chronic illnesses,
including the neurological,
are almost entirely caused by microbes
and their activity in us,
and the microbes are
no longer symbiotic with us
because we are not symbiotic
with the environment.
My hope is to help people
to step out of the fear
and the hysteria around lyme disease,
and to show what it means
to treat and heal holistically.
I don't think for me
antibiotics were the answer.
When they were needed,
they were very appropriate,
and they were the answer;
but to get me out of
this chronic illness,
it was gonna take way more
than just a pill to kill off the bug.
Now I understand that healing
happens on all levels,
so taking on your own pain
emotionally and spiritually,
that was the greatest
breakthrough for me.
You know, we talked a long time
about whether or not we should
try for the fifth time.
I'd had four miscarriages,
and we knew that the risk
of him being sick
and the risk of him being born
and dying right there was out there,
but I knew that
I always would have regretted not trying,
and I knew that if he were
born and he were sick,
we could care for him.
Jared was born with lyme disease,
and he started coming here,
and he made it.
You know, he's done
very well. He's made it.
He's a happy little kid.
If I did not have
Dr. Jones in my life,
I probably would not
have had a little boy.
The fact that he was born,
and he was born well enough for me
to hold him and care for him,
and he grew, was amazing.
It's a miracle. I really
think it's a miracle.
I call him my miracle baby all the time.
So I received a diagnosis
of a terminal condition,
and after I received that,
I gave up my medical license,
stopped my medical practice,
stopped my research.
I got rid of about $100,000
worth of laboratory equipment.
I donated it to colleagues
who were doing lyme research.
My medical career had ended.
It was a rough time.
It was definitely a rough time.
When they diagnosed Alan with
the frontotemporal dementia,
a lot of it was based on scans
and psychological testing.
A couple years later,
they redid his testing,
and they tell him he passed
with flying colors.
And then they said, "well,
you don't have the dementia,"
and then we were basically dismissed.
I was lucky that there,
over time, was a healing.
And what caused
the healing, I don't know.
In "under our skin," Alan
MacDonald, Dr. MacDonald,
first exhibited the roll of biofilm.
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.
A biofilm was a hallmark
of a chronic infection.
It is a gelatinous substance
that encases the germs
and protects them from
immune system attack
and protects them from even antibiotics,
rendering the infection more chronic
and more difficult to treat.
Chronic infection is denied
by the infectious disease society
of America at all costs.
Everything that is built into biofilms
is essentially supportive
of chronic lyme infection.
So, that's strong evidence
that the role of borrelia in many cases
is due to chronic borrelia infection
of the biofilm type.
Over the last number of years,
more and more evidence has come out,
including the biofilm
work by Alan MacDonald,
that supports his notion
that chronic lyme exists,
in other words an infection
of borrelia of lyme
that can persist for long periods of time
and even be treatment-resistant.
There was a study that was on monkeys,
a very important, groundbreaking work.
When you treated a rhesus monkey
for the same period of time
that you would treat a human,
they continued to have
persistent spirochetes in their tissues.
And then the last thing they
found, which is also critical,
is they found that monkeys
that were not treated
that had been, you know,
had been given a lyme disease,
that those monkeys, over time,
tested negative on the test, too.
So there's something that
happens in the immune system
so that you can't detect.
Lyme disease was first
identified in the 1970s,
but it now turns out
that it's much more common
than previously estimated,
about 10 times more.
The CDC now estimates there may be
as many as 300,000 new
lyme infections a year.
It's a really important jump.
It's six times the number of HIV cases,
50% higher than the number
of breast cancer cases.
It's a huge problem.
There's conjecture in
the lyme disease community
that the reason the CDC
all of a sudden reannounced
that lyme disease cases
are really 300,000 a year
is to premarket
for an upcoming lyme disease vaccine.
The vaccine is entirely dependent
on antibodies to one
protein, which is ospa.
They've chemically
combined a European ospa
with a United States ospa,
and they believe that this
combination, which is unique,
will provide protection against anything
that a tick can put
into your bloodstream.
But the co-infections and many strains
are not within the job description
of vaccine protection,
so the vaccine's not like
kevlar that stops all bullets.
The worst thing that could
happen to the patient community
would be for people to come in,
use the patient community to market
a vaccine that harms patients.
The last vaccine that they had out
actually harmed patients.
It harmed people who weren't sick.
If lyme disease responds
to 30 days of treatment across the board,
what's the need for the new lyme vaccine?
One of the problems
is that there hasn't been
a strong interest
in going after treatment options
because most of the treatments
are cheap generic antibiotics.
But with vaccines,
it's a patentable product,
and it's got a large market.
It puts into question
the scientific integrity
of people doing the studies.
Some of the consultants
in connection with this new vaccine
are idsa guideline members.
Members of the CDC, idsa and others
have patents for diagnostic
testing and for vaccines.
They've arrogantly used their
pulpit to deny other patents.
When I was doing research,
it just appeared that
the CDC was a key player
in fanning the flames
of the lyme disease war.
They wouldn't talk to us
directly at conferences
or they wouldn't answer our
questions over the phone.
My impression is that CDC and idsa
was trying to avoid
having information released
in a nationwide documentary film.
July of 2007,
we filed a freedom of information act.
It asked for emails from three employees
and financial disclosures.
By law, the CDC is supposed
to release those documents
in about a month,
but they weren't released
for 5 years, 4 months, and 24 days.
When I finally received the documents,
we got 3,000 pages back.
Over half were censored,
and they never did give us
their financial disclosures.
The big thing is, the CDC
has been collaborating with
the lyme guidelines authors
in a way that's outside
of government rules and regulations.
I think among lyme disease patients,
there's a feeling that
the money has all been
going to the same people
who have a bias against the existence
of chronic lyme disease
and a real disrespect for the patients.
Nih officials call lyme
patients, "lyme loonies."
They call their treating
physicians quacks.
There's one nih official
who says, "this is a war with patients",
and we need to
start shooting back."
Thousands of Americans
come down with lyme disease every year.
The medical system seems unable
to deal with the disease.
If it's untreated, it can trigger
permanent neurological
and physical degeneration.
By the time it strikes
your central nervous system,
it could be too late.
Health insurance companies
won't pay for chronic
lyme disease treatments.
Tens of thousands
of out of pocket dollars...
It's known as lyme disease.
Thousands suffer from it,
and the symptoms are
devastating, often fatal.
In my practice, I've seen
children from all over the world,
from every state in America,
every province in Canada,
every state in Mexico, south America,
central America, China, Japan, India,
Australia, New Zealand,
and every single country in Europe.
We have official data
of around 60,000 cases,
but the unofficial number
is several hundred thousand each year.
1,500 cases every year reported,
and in the last 10, it has doubled.
Officially, there are more or
less 30,000 to 40,000 cases,
new cases each year.
That is not the real situation.
50,000 new cases.
Some of the doctors are threatened
to lose their licenses.
As of last year, 100%
of Canadian doctors now
who have become publicly known
as treating lyme disease
have now been shut down.
In the U.S., people are
debating about the severity,
whether there's chronicity,
whether treatment works.
In Australia, the debate
is it doesn't exist.
Good evening and welcome to the program.
First tonight, the silent
and deadly killer
that's striking down healthy
Australians every day.
This hideous infectious
disease is spread by ticks
and other insects,
such as fleas and mites,
and unless diagnosed
and treated immediately
can have tragic consequences.
A man has died from a disease
he caught from a tick,
but yet again authorities here
refuse to acknowledge
the disease exists in Australia.
Officially, Australia
is not an endemic area
due to a study that
was done 20 years ago.
Some microbiologists
gathered 12,000 ticks,
crushed them up, found
some borrelia-like organisms,
but decided they weren't lyme
and discarded them and then reported
there was no lyme disease in Australia.
However, there is a lyme-like
disease in Australia.
So it's accepted there's a
lyme-like disease in Australia,
but they don't know the causative agent.
Actually one of the problems
in lyme disease
is it's very name, lyme disease.
Lyme is an infection
by the germ called borrelia,
and the reason why that's important
is because there are hundreds,
literally 200 to 300
different kinds of borrelia,
and lyme disease
is from just one of them.
Lyme disease needs to be renamed, period.
I don't care what you call it,
but there's too much of a stigma,
there's too much prejudice
around lyme disease.
The moment those two words
come out of a patient's mouth,
immediately, if you just look
around, you'll see an eye roll,
and that's how you know
that person is no longer open
or really should be treating that.
We now need to divorce ourselves
from the confines of lyme as a word
and as an easy-to-cure,
hard-to-get infection,
and open it up to borrelia complex
as an easy-to-get,
hard-to-treat infection
due to multiple species
and multiple co-infection.
There are no rules
for borreliosis complex
on the CDC website,
and idsa has no rules
for borreliosis complex.
So let them have their lyme,
let the rest of us have borreliosis,
and let's get on with life.
Well, the medical community
seems to be split
by the great lyme disease debate.
Is it sexually transmitted?
Is lyme disease the next
epidemic after aids?
The study that was just
published in abstract form
in the journal of investigative medicine,
described genital secretions
in patients with lyme disease.
What we found was that
you can find live bacteria
that cause lyme disease
and also the same strain
of the spirochete
in married couples.
I think it's really a game changer
that will completely change
the way people look at this disease.
There's things that I'm feeling
that probably happen to everybody.
Like, one of my eyes is blurred out
and I've always had 20/10 vision.
I won't tell you that it's
not in the back of my mind
that it is possible.
Sean had antibodies for lyme,
but they said that he was
not symptomatic to treat.
He's had no issues with it,
and he's had no need for treatment.
If you think about how many
people are probably infected,
it's overwhelming how many people
could actually be very, very sick.
It's scary.
In newtown, Connecticut,
today is a very different
world than it used to be.
It's a different place.
The world knows about it.
For us, newtown is a place
we raised our children.
It was a place we spent eight years.
It was a place we loved but we
feared because of the ticks.
So when newtown happened,
I just sat on this chair
and I cried and I just cried
and I just desperately
tried to get in touch
with the people I knew
because my son Jared
could have been in
that first-grade class.
When it became clear
that there was a teenage boy
who had taken his own life,
killed his mother,
and so violently hurt other children,
there's no doubt it went through
my mind that he was sick,
that he was sick with lyme disease.
There was some information
that perhaps the mother
had been diagnosed with m.S.,
and immediately then I put
the two pieces together.
He very well could have had
congenital pediatric lyme disease.
Doctor, you claim that
it is a possibility here
that lyme disease leading to lyme rage
may have been the reason why the shooter
acted in the manner that he did?
No question about it.
The literature is filled with cases
of lyme disease that affects the brain.
You must consider lyme disease
in this perpetrator.
A common mistake that many doctors make
is they say, "well, that's psychiatrics",
so therefore it's not
related to lyme."
But some of the children,
teenagers, adults,
I can see lyme rage,
and it's hard to believe
unless you've seen it.
A deadly church shooting in Illinois
leaves some local folks in shock.
Prosecutors have now charged
27-year-old Terry sedlacek with murder.
While police are not commenting
on a possible motive,
sedlacek's mother blames her son's
erratic behavior on lyme disease.
It's important to make sure
that there's not lyme disease
that's driving the whole
psychiatric problem.
Lyme disease is most commonly treated
with oral antibiotics
for generally 14 days.
Most people respond very quickly,
and by the time they're concluding
their antibiotic therapy,
they're almost 100% improved.
I feel completely well.
I have had no symptoms since
day three of that antibiotic.
Chronic lyme exists!
Chronic lyme exists!
Chronic lyme exists!
Chronic lyme exists!
Chronic lyme exists!
Today I'm just asking and praying
that somebody in that building over there
can develop a trace of skepticism
for what they think they know for sure
because we have this
one group of diseases
for which denial is the cure.
We get 28 days of raw antibiotics,
and then you're done.
And whatever you have,
it must not be lyme.
The infectious disease
society of America guidelines
are effectively being used
to restrict diagnosis,
to restrict treatment,
to have insurance companies
deny treatment,
to deny proper care
to lyme disease patients
across the board.
When we develop guidelines,
we create a panel
that reviews all of the
evidence that's available
to decide what is in the best
interest of patient care.
I want to emphasize one point.
Guidelines are exactly
what they say they are.
They're guidelines.
They're not rules, they're not laws.
They're designed to guide physicians
in the care of patients.
Seven years after the guidelines
were published in 2006,
nothing's changed.
The Attorney General had brought a case
against the infectious
diseases society of America
lyme guidelines authors
and said, "you must reevaluate
those guidelines"
with an unbiased panel
and update them."
Our investigation concerns
whether the anti-trust laws
have been violated,
purposefully or not, by these guidelines.
The Attorney General for Connecticut
was well intentioned but misguided.
No one on the panel
that wrote the guidelines
for lyme disease
stood to benefit
from the recommendations that were made.
So, when he suggested an
independent review, why not?
We have total confidence
in our guidelines.
Well, there was a hearing held,
and they put together a panel
to review the guidelines.
Nobody who was on the previous guidelines
could be on that panel,
but they screened
for conflicts of interest,
but they didn't screen for impartiality.
Everybody who sat on that panel
was a member of the idsa,
so it's sort of like having, you know,
general motors decide whether
Ford's cars aren't good.
It was not impartial.
During a period of several weeks,
we solicited comments
from the general public,
physicians, scientists.
We also looked at any new evidence
that has come to light since 2006.
They listened to all of the evidence,
and then they came to a conclusion.
They weren't going to
revise the guidelines.
Idsa, treat our chronic lyme today.
Idsa, treat our chronic lyme today.
Idsa, treat our chronic lyme today.
I came to listen to Gary wormser,
who's the lead writer of the guidelines,
to try and hear about if they're revising
the lyme disease treatment guidelines.
At the very end of the session,
they said they're just
in the beginning stages
of rewriting the guidelines.
To me, that's a huge tragedy,
because the guidelines
are already seven years old.
Two different areas here
we're trying to help.
So one is to make sure that you're heard.
You were heard in 2009 at the panel,
and you're heard now
and that's why we're here.
Step two is find things where
we have shared interests.
I mean, I think we're all
interested in better
epidemiology. We're all
interested in better tests.
It's interesting because one of
the things they said to me was,
we need to find the area
of things that we agree about,
and we all agree the
diagnostic tests aren't good.
And I was surprised
because they have guidelines
that say you have to have
a positive diagnostic test
in order to be diagnosed and treated.
But there's, you know...
There may be a growing
recognition on their part
that the diagnostic tests aren't good.
The problem with lyme disease
is it's deniability.
When you have a situation
like we have right now,
which is that there really
isn't an effective blood test
that will tell us all the time
whether a person is or is not
infected with borrelia,
you have a situation
of plausible deniability
for health maintenance organizations,
insurance companies, skeptical doctors.
The magic bullet right now
is clearly a good test.
Dr. Burrascano, good luck
in whatever you do.
You're a wonderful doctor.
After I closed my practice,
I went to work for a biotech company,
and one of the contracts I got
was from a lab in Pennsylvania,
and they wanted our advice
on developing a high value blood test.
Under my direction, they assembled a team
to include Dr. MacDonald,
Eva sapi and some others.
The game changed now.
This is a culture test.
It can show whether you still
are infected post-treatment.
It can show whether you
have lyme in the beginning,
even if the standard suralgia tests,
which we know are not very good,
even if those tests don't show lyme.
There is additional work
being done in Oslo, Norway.
All this is direct microscopic
examination of human blood.
Now, if you look on the CDC website,
the gold standard that the CDC
holds up as the gold standard
is growing the bug from body tissue.
Advanced labs has grown
the bug from blood,
which is a body tissue.
What does the CDC do with this?
The CDC wrote a paper
saying that advanced labs
was not to be trusted.
That all of the cultures,
70, were contaminated.
So, it looked almost
like I rushed through
an attempt to try and discredit something
without really thinking it through.
In my 30 years of practice,
I have never seen the CDC
go after one laboratory
and attempt to put it out of business.
It doesn't make sense scientifically,
but it makes sense politically.
The CDC does not want
chronic lyme disease
to have a foothold as a
legitimate medical entity
in the United States or
elsewhere in the world.
There was a rebuttal to the
study of sexual transmission
in "outside" magazine.
Paul lantos, who's from the idsa,
raised some points about
sexual transmission
that he claims make it unlikely.
I think that the people who
hold that point of view
will do pretty much everything
they can to maintain it.
The CDC uses a very restrictive
definition of lyme disease.
It's certainly restricts the, you
know, the criteria for the disease,
so it makes it easier
to get a vaccine approved.
For a vaccine to work,
you have to vaccinate people
who are not infected.
So, if we now find that
there are a lot of people
who've been infected
through sexual transmission,
then that's gonna decrease the market
for the vaccine significantly.
What has happened
in lyme disease, I think,
is really uncommon, in a way.
Research has been very insular.
It's a really tiny group of people.
The idsa, there's like five people.
They sit on most of the editorial boards,
and they are involved in most
of the Grant-making decisions.
Open science only exists
when you have competing viewpoints
being in the same arena.
It doesn't work when
you exclude other people
who think differently from you.
The story of lyme disease
has been that the public health response
has blown in the direction
of the big money.
Healthcare is seen as an industry,
not as a compassionate
response for ill people.
We believe ourselves to
be a Democratic society,
but the facts are, we're getting less
and less Democratic all the time,
and the wind is blowing more and more
in the direction of the big money.
It's become apparent to me
that the lie is too big to confess.
This is an insidious, progressive,
highly debilitating illness
which robs people of their lives,
their souls, their ability to function.
These sins committed
are so grave and so ugly
and so large
that it can't be negotiated out.
So the lie's too big
to confess at this point.
The world is changing,
and a smart country will do
what the United States did not do.
28 countries right now,
people are doing this
about tick-born disease.
It's our world stage.
We're here to fight lyme disease.
It's said many times
that we have a high standard of care.
What we actually have
is a standard of neglect.
But firstly, I'd like to thank
everybody for coming today.
I know a lot of you are very, very sick.
We need to be counted,
our lives matter,
and I'm asking you not to give up.
I'm asking you to keep going.
I never dreamed that following your heart
and your instincts in medicine
and working very hard
would be met by such
resistance by those in power,
and I've learned.
I used to be a very naive,
hardworking doctor.
Now I'm a very cynical
hardworking doctor.
Knowing everything
that I've been through,
I still wouldn't change it because
of how much I've learned,
all the people I've met.
I know I wouldn't want to go
into a medical field
if this had never happened.
Try not to get discouraged.
If you feel that something
is wrong with your body,
you know your body better than anyone.
You're the only one that lives in it,
so don't let someone
tell you that you're wrong.
You can get better,
and you will get better.
I think with self-care and diligence,
slow and steady, you'll get well.
I believe that each of us
is here for a purpose,
and I believe that if
we have the good fortune
to recover from a health problem...
It may be a very serious problem...
There's a reason for us
to continue to be here
and to do what we're doing.
I can't think of anything more important
to do with your life's work
than to say, all right,
we have 150 million people
with chronic illness in our country,
and we probably got a lot it wrong.
So I feel like I have
to continue the fight.
I think we're going to win the fight.
I think Robert frost had a poem.
"Two paths diverge
in the middle of a wood,"
and I took the one less traveled by,
"and that has made
all the difference."
And that's it.
Dear Jared, it is 5 A.M.,
and I'm sitting on our front porch.
Hopefully today will be
a day of celebration,
as we prepare to go to
the hospital this morning
to bring you into this world.
Your birth is a victory
for many women and families
in this world.
It is the last chapter
in our struggle with this disease.
It is a testament to the hope
that many families with
lyme disease depend upon.
Hope is what created you.
Love, mommy.