FOX 5 NY, Lyme & Reason

can you see that inside of this jar and
organism no larger than the tip of a
ballpoint pen this tick can literally
lead to a world of chronic pain
deep-rooted frustration and feelings of
abandonment
it is also ignited a contentious
national debate over lyme disease over
the next half hour we will peel back the
layers of this controversial illness you
will hear from a doctor who lost his
heart a child who has lost the ability
to walk and his singer on the brink of
stardom who nearly lost her ability to
perform but first climb what is it and
how do you get it here's this column
Lyme disease is an infectious disease
carried by a black legged tick more
commonly known as a deer tick and when
that tick bites you as its bitten it
starts to inject some of its abdominal
contents into the skin and thereby it
brings whatever is in its stomach onto
into the human and so that might contain
microbes that cause Lyme disease dr.
Brian Fallon is the director of Lyme and
tick borne diseases Research Center at
Columbia University he says in most
cases patients develop a rash and
flu-like symptoms fatigue and muscle
pains and joint pains you might feel
like you've been you're totally
exhausted then you feel like you need to
be in bed and your brain is not thinking
clearly enough Fallon says if a tick is
found on your body save it and take it
to the doctor for testing a specialist
can determine a course of treatment
right away if Lyme disease goes
untreated for two weeks there can be
serious side effects mood symptoms
sometimes prominent anxiety attacks and
rarely it might cause some very serious
psychiatric symptoms such as paranoia
sometimes a bipolar like disorder but
with Lyme disease comes controversy
questions over testing and treatment
have triggered a national debate among
health professionals and caught in the
middle the patients
most people don't recall a tick bite
most people don't recall a rash
unfortunately I wish they did because
they did they can get treated earlier
and early treatment is associated a
better prognosis but for even in those
early stages the relapse rates for an
excess of 20% so what's the first
inclination that something's wrong they
have flu-like symptoms they think it's
the flu then the next day it gets better
so typically line comes and goes on its
own so they say oh I'm over it and then
two weeks later there's check again the
unfortunate thing is people will turn
around six months later and it's kind of
this pattern and their functional status
is such declined they go what happened
to my life
but answering that riddle has triggered
endless debate and controversy over how
best to treat the illness the doctors
kind of fight on how long and how
aggressively Lyme disease should be
treated so there are two medical
societies that have very polarizing
views online one's called IDSA which
stands for infectious disease inside of
America and they advocate for a shorter
term treatment that is called eyelas
which stands for international I'm
associate disease Society and they
advocate for a kind of case-by-case
treatment for the people who don't
develop chronic symptoms they advocate
for a shorter treatment is okay after
people with longer-term and recurrent
symptoms they advocate for a longer term
in about therapy but this type of
treatment presents concerns for the
Centers for Disease Control and
Prevention the IGAD guidelines advanced
two basic ideas there really is not any
adequate scientific information about
the management of Lyme disease in the
absence of that health care providers
should be free to do and treat patients
in whatever way they see fit our
concerns are that that misrepresents or
does not give full credit to the amount
of scientific evidence that there is
about management of lung
and perhaps more importantly we are
concerned about patients who are being
treated with unproven therapies the
other issue
testing for Lyme disease the tests that
are used to diagnose line or
forty-year-old tests which are very poor
accuracy so we have a bad test to
diagnose it and once it is diagnosed we
don't have a test to show that it's gone
early in the course of infection the
test may be falsely negative and so
there is a window period early in the
course of infection by which I mean in
the first few weeks when a patient may
be infected and not yet test positive
unfortunately that song all too familiar
to dana parish i was the prime of my
life I'm a songwriter I'm a singer I
just signed a deal with Sony a
three-year deal and right before I sign
the deal I was bitten and my whole body
went haywire we fall duh I had sort of
every manifestation of line my head
heart my joints hurt my limbs my fingers
and my toes were tingling I had anxiety
and depression and insomnia so I was in
pretty bad shape and I had gone to 11 or
12 doctors in New York City I kept going
to infectious disease doctors I kept
asking if it could be Lyme they kept
saying no they said unequivocally you do
not have this unequivocally you don't
have it like so many in her shoes after
going through a checklist of symptoms
Dana realized all signs pointed towards
Lyme I was on vacation in California
found a doctor that was a Lyme
specialist agreeing to see me on
vacation was very kind knew immediately
that I had Lyme and then I came back and
started treatment with dr. Phillips how
did that doctor know immediately though
I mean if 12 11 other doctors didn't
know you had this if and how does this
one know immediately because he's a
specialist and because that's what
people need to know is that they should
not be going down this rabbit hole both
patient and doctor have now come
together in a unique effort to raise
awareness about this debilitating
disease when the science backs it up you
have to do what's right in this world at
some point that's all it comes down to
and I encourage the patients like I said
if something doesn't feel right to look
further do not take things at face value
because it's frequently not correct I
think that people should take their
symptoms a little bit more seriously and
not blow them off because time is of the
essence when you have Lyme in a lot of
cases and the longer it goes on the more
difficult and the more painful the
treatment is for a lot of people next
the doctor diagnosed the Lyme battle
that cost one physician his heart stay
tuned the controversy of line begins at
first bite a small mark that can lead to
a very big bill so who pays for it Alice
and Morris investigates insurance
companies generally refused to cover any
kind of treatment beyond 28 days a
startling reality for many people
battling chronic or persistent lyme
disease because the cdc guidelines
characterize Lyme is hard to catch an
easy to cure antibiotics may only be
covered for a matter of weeks paying out
of pocket can be financially devastating
I know families that have been
completely financially ruined trying to
treat themselves or their children Susan
green would know she's the Legislative
Council for the nonprofit the national
capital Lyme disease Association and a
Lyme disease advocate who was
misdiagnosed herself had a seizure in
the middle of a trial I lost my ability
to speak lost use of my limbs and I
found out later that I had passed Lyme
disease to my son in utero dr. Paul need
with the CDC says they want people to be
properly diagnosed and treated but
studies show antibiotics may not be the
solution and that may influence the
insurance companies patients who get
antibiotics improved but they do not
seem to improve substantially faster
better than patients who got placebo so
that may influence some of why they
our choosing to cover or not cover those
costs the effects of lime can be
lifelong and spiral into unforeseen
medical complications for world renowned
oncologist dr. Neil Specter Lyme robbed
him of his heart i sat down with the
doctor turned patient to hear his story
the doctor/patient relationship is all
important especially for Lyme disease a
disease where people often feel very
isolated isolated from the healthcare
community who may not believe that
they're sick often sadly isolated from
their own families I believe it's all in
their head and they're faking it and I
understand from a personal level so it
gives me sure - yeah that's sort of
street credibility it was 1993 I then 37
year old dr. the picture of health with
a bright future ahead became the one in
need of care I figured I was immune to
getting sick right I mean I took care of
people not the other way around so I got
bit by a tick and never saw the tick
just like a lot of people with Lyme
disease don't remember the ticks are
almost like a speck of dust so I went
from running marathons to literally
within a span of months to barely being
able to walk 20 yards without having to
stop for extreme fatigue so I knew
something was wrong and I was having
arrhythmias so my heart would start
racing upwards of you know 100 200 180
beats a minute and every time I'd go to
the emergency room the arrhythmia would
have resolved and they would say you
know you're a physician so you talk to
your physician they knew I was were you
going to your hospital they were you
were practicing or affiliated with I was
going to the medical school that I was
working at and and I had very
compassionate physicians and you know my
blood counts were normal the tracing and
my heart rhythm and be normal and they'd
say you're stressed an eventual
diagnosis of third-degree heart block
and a potentially fatal arrhythmia led
to the installation of a permanent
pacemaker defibrillator so I essentially
had a 911
in my chest that would shock me if I had
a potentially fatal arrhythmia ongoing
heart issues and other symptoms
compelled dr. Spector to solve the
riddle himself a puzzle in which all the
pieces pointed towards Lyme I forced my
doctors to repeat the test they
diagnosed Lyme disease finally I was
treated aggressively with antibiotics
most of my symptoms resolved but the
damage to my heart was permanent and
then in in June actually of 2009 I went
into florid heart failure and was told
by a surgeon that I have 72 hours to
live on a Friday afternoon July 17th
that I would be dead by Monday without a
heart transplant
dr. Spector chronicles his experience in
his new book gone in a heartbeat a
physician search for true healing seven
years after undergoing a successful
heart transplant he now leads an active
life once again but he is determined to
make a difference in the Lyme community
I'm not somebody who's out there you
know on the lunatic fringe that I've
you're not a quack I'm not a quack you
know I've been in academics all my life
I've developed two cancer drugs I
published in the best journals and so if
this is happening to me you know I feel
obligated I need to be out there saying
we need more research we need more
awareness coming up you know her as the
daughter of a fashion icon
Ali Hilfiger bit by a tick now Ali bites
back they're rich they're beautiful and
they appear to be the picture of health
but that's not always the case
Arthur Chan shows us why even some
celebrities aren't immune to line
it may be called the quiet disease but
when Lyme disease hits it's symptoms or
anything but its victims arbitrary like
singer Thalia who in 2007 was pregnant
when this happened I lost my hair I was
like a bone I couldn't move I couldn't
talk I couldn't think I couldn't let my
bed for moms I was having stomach
problems I was nauseous I was very tired
my joints were very achy Marla maples
along with Thalia are just some of the
high-profile faces using their celebrity
status to fight the disease claiming
300,000 new cases each year now for
maples her symptoms linger nearly three
decades after she was diagnosed there's
still some symptoms I have now like
brain fog that I I wonder and sometimes
my joints are a little achy so I'm going
to retest with such a high permanent
cause of Lyme disease the emphasis is
really about the rest of us getting
better about detection and celebrities
are hoping that by publicizing their
personal battles more people will be
paying attention I hope that we can
raise enough men money and you know get
people educated and hopefully find a
cure soon another celebrity fighting
back ally Hilfiger the daughter of a
fashion icon she shares with Linda
Schmidt how one little bug bite nearly
saw her committed I look back and I
think how did I get through that people
die from this yeah I could have died and
Ali Hilfiger still isn't cured Lyme
disease continues to inhabit her body
the life that she's led is not what you
would expect from the daughter of Tommy
Hilfiger one of the most successful
fashion moguls in the world with all of
their resources Ali's parents didn't
know why she was so sick even if you
have privileged as I did we still
couldn't find an answer for 11 years
Ali details her painful struggle in her
new book bite me when she was seven
years old Ali was bitten by a tick she
says her mother sent it to the town hall
where they lived in Connecticut to have
it tested
the test results were inconclusive she
says her mom then went to a specialist
who said that he couldn't help within a
short time Ali started showing symptoms
when I came home saying my legs hurt
mommy my legs hurt when the teachers
would call and say Ali seems really
tired and she keeps stretching her legs
or you know she's out of school a few
few more times than other kids this year
from strep throat she's having a lot of
headaches even the pediatrician said he
know what's his growing pains Ali says
this continued through her teenage years
her symptoms getting worse she was in
constant pain her memory was failing and
she became incapable of reading and Ali
was misdiagnosed over and over again it
might be multiple sclerosis it's
probably fibromyalgia maybe it could be
rheumatoid arthritis as a teenager Ali
had a mental breakdown her father forced
her into a psychiatric hospital in
Connecticut Lyme disease invaded my
brain I literally went crazy had a
nervous breakdown and I wasn't able to
understand how to feed myself take a
shower make a phone call
winding up in that psychiatric hospital
Ali says ended up saving her life it was
her psychiatrist who finally diagnosed
her with Lyme disease it took over 11
years for somebody to connect the dots
after that diagnosis at age 19 Ali went
through years of numerous painful
treatments now at 31 she says her Lyme
disease is manageable she is also a
national spokesperson for Lyme disease
awareness if I could find the silver
lining in my experience it is to use my
experience to benefit others
coming up blessed by the Pope
saved by the kindness of strangers the
little girl putting a spotlight online
stay tuned
when it comes to kids and pets the issue
of Lyme disease cannot be stressed
enough prevention is key
Stacy delicate shows us how best to keep
them safe for childish shows up in the
summertime with flu-like symptoms
without cough or cold especially fever
headache joint pain I have to think
about Lyme disease infectious disease
pediatric specialist dr. patricia della
Mora has already seen plenty of cases of
Lyme so far this summer if your child
plays outside in or near a wooded area
she says dress them in light-colored
clothing to easily spot ticks and use
repellent with DEET and she says always
do a thorough check when the kids come
back inside in the hair is a place that
I see children get missed
every single year because they have to
care and the tick is tiniest the size of
a poppy seed so really checking the hair
behind the ears in the ear in the
bellybutton the groin area covered by
underwear for Fido frequent tick checks
are also a must
ticks usually migrate to the front area
of the dog often around the ears or
inside the ears if you're feeling with
your fingers you may find a little
little bump or something feels like a
scab Lauren sputter the medical director
at Lenox Hill veterinarian says many
dogs may be good candidates for a Lyme
vaccine but he also recommends using at
least one other preventative method
there's the collar there's the topical
things they put in the back between the
shoulders monthly and now there's those
of the pill symptoms and dogs include
lameness or limping lethargy loss of
appetite and swollen lymph nodes and
like humans treatment often includes an
antibiotic Lyme disease affects the mind
body and soul but for one little girl in
Brooklyn it has taken a piece of her
childhood and her ability to walk AMG's
ee G's M eyes blood test I had a spinal
tap
they thought it was meningitis and that
I
terminus at the age of 12
Julia Bruce AZ has a medical vocabulary
that would impress even the most
sophisticated adult I started not
feeling my legs like having actual sense
sensory deficit she uses words and
phrases only understood by someone in
the fight of their life they came in and
you know just surrounded my bedside and
told my dad
we think it's conversion disorder hers
is a life sidelined by Lyme you are so
mature for somebody that is so young how
do you stay so strong I learned how to
be strong for this my normal life was
taken away from me Julia's story begins
upstate vacationing with her family she
doesn't remember the tick or even the
rash what is seared in her memory is the
journey that ensued left without the
ability to walk the last three years
have been a blur of hospital rooms and
doctors offices pill bottles and PICC
lines misdiagnosis and misinformation
I remember just laying there and just
saying like why God like I just remember
getting so mad like why me then an
answered prayer from Pope Francis on his
historic visit to New York City he came
over to me and it was like so magical
when you were waiting in that long line
and the Pope put his hand on you is that
the moment that you realized I'm gonna
get better that was the first time that
I knew that you know everything was
going to be okay and I knew that he was
going to make everything better
six days after Pope Francis Blessed
Julia on the tarmac at JFK Airport she
received her first positive Lyme
diagnosis the sign she says she needed
to be treated properly what followed
were the doctors donations and the
intravenous antibiotics needed to fight
this battle I think the Pope brought
this amazing journey that amo
he gave me a new mission in life and a
new goal to look forward to he made my
dreams bigger bigger dreams in the
support of the community who understands
but the burden placed on her family has
been nothing short of tremendous one
Hospital told me I have three other
children who are healthy I should
concentrate on that Julia's dad speaks
candidly about the effect Lyme has had
on the bruise easy family I lose sleep
over this and I dream of Julia walking
again
I see people walking outside and I say
well I can't Julia walk no you know it's
taken over our lives it's estimated
Julia's fight has cost the family one
hundred thousand dollars a year they
nearly lost their home and Enrico was
forced to leave his job he has now
dedicated his life to helping his
daughter I feel like when I say Lyme
disease I feel like a UFO spotter I feel
like people doctors are looking at me
like I'm crazy you know yet I have a
sick daughter who was I mean the
picture-perfect twelve-year-old girl as
for Julia there's no prognosis just yet
only hope that things will continue to
improve
just a symbolist thing of walking up the
stairs and just riding a bike is what I
miss just spending you know walking
around that's what I dream of
the issue of lime is multifaceted and
incredibly controversial for that reason
we have put the full interviews from
this special on our website Fox 5 NY com
thanks for joining us for this in-depth
look at the damage a tick can do I'm
Teresa pre Ola and for all of us at Fox
5 News goodbye