DEADLY LYME SEASON: HILFIGER’S TICK TALE

May 11, 2019 at 5:15 am

The CDC issues a warning that tick-borne illnesses are on the rise, especially in New York. Ally Hilfiger survived Lyme Disease but endured hell before being accurately diagnosed. She shares her story.

Aired on May 10, 2019.

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>>> IMAGINE IF EVERY DAY YOU
THOUGHT YOUR LEGS WERE GOING TO
FALL OFF FROM THE AMOUNT OF PAIN
RUNNING THROUGH THEM.
AND IMAGINE IF YOU STARTED
BLACKING OUT AT VARIOUS POINTS
DURING THE DAY.
>> THAT WAS ALLY HILFIGER, THE
DAUGHTER OF FASHION DESIGNER
TOMMY HILFIGER, REVEALING THE
PAIN SHE SUFFERED FOR YEARS
WHILE BATTLING LYME DISEASE, HER
ORDEAL BEGAN AT AGE OF SEVEN
WHEN SHE WAS BITTING BY A TICK.
HER TESTS WERE INCONCLUSIVE.
SO YEARS OF MISDIAGNOSIS
FOLLOWED.
AT 11:00 IT WAS RHEUMATOID
ARTHRITIS OR MAYBE MULTIPLE
SCLEROSIS, AT 16, IT WAS FIBROMY
AIL GENTLEMAN, WHEN SHE WAS 16
HER DESPERATE FATHER CONVINCED
THAT IT STEMMED FROM A MARIJUANA
HABIT.
HAD HER COMMITTED TO A
PSYCHIATRIC HOSPITAL.
HILFIGER IS TELLING THE ENTIRE
STORY OF HER STRUGGLE IN HER
BOOK "BITE ME: HOW LYME DISEASE
STOLE MY CHILDHOOD."
SHE JOINS ME NOW.
THANK YOU FOR JOINING US.
>> THANK YOU SO MUCH FOR HAVING
ME.
>> THIS IS A WONDERFUL BOOK.
IT'S RIVETING AND HARROWING I
HAVE TO SAY.
BUT ALSO FUNNY.
>> THANK YOU.
>> YOU HAVE A SENSE OF HUMOR IN
BETWEEN ALL THE PAIN.
>> THANK YOU.
>> WHEN YOUR MOTHER FIRST SAW
THAT LITTLE TICK ON YOUR BELLY,
WHEN WERE YOU A LITTLE KID,
ABOUT SEVEN, SHE DID EVERYTHING
SHE WAS SUPPOSED TO DO.
SHE PLUCKED IT OFF WITH A
STERILIZED TWEEZERS, PUT IT IN A
TEST TUBE, BROUGHT IT FOR
TESTING.
BUT IT CAME BACK INCONCLUSIVE ON
THE NEGATIVE SIDE OF THE
SPECTRUM.
HOW COULD THAT BE, SINCE YOU DID
CONTRACT LYME DISEASE?
HOW COULD THEY HAVE MADE SUCH A
MISTAKE?
>> UNFORTUNATELY MY STORY IS NO
DIFFERENT THAN MANY OTHERS.
IN THAT MANY PEOPLE'S BLOOD
TESTS COME BACK INCONCLUSIVE OR
WITH FALSE NEGATIVES.
SOMETIMES EVEN WITH FALSE
POSITIVES.
HOWEVER, MOST OF THE CASES IT'S
FALSE NEGATIVES.
IT'S VERY ARCHAIC TESTING.
>> STILL?
AFTER ALL THESE YEARS?
>> STILL ARCHAIC, WE'RE TRYING
TO FIGURE OUT A BETTER WAY TO
DIAGNOSE AND TEST.
>> GIVE US A SENSE OF HOW YOUR
HEALTH BEGAN TO DETERIORATE.
WHAT HAPPENED TO YOU MENTALLY
AND PHYSICALLY AND HOW IT
AFFECTED YOUR ENTIRE CHILDHOOD?
>> RIGHT.
WELL I STARTED OUT WITH PAIN IN
MY LEGS AND JOINTS AND KNEES AND
MY MUSCLES, STREP THROAT AND
HEADACHES.
AND YOU KNOW, IT WAS -- IT WAS
DIFFICULT BECAUSE I THOUGHT THAT
MAYBE OTHER PEOPLE HAD THIS PAIN
AND WHEN I FOUND OUT THAT THEY
DIDN'T, I FELT DIFFERENT AND
WHEN THEY COULDN'T FIGURE OUT
WHAT IT WAS, THERE WAS NO
SOLUTION, I FELT LIKE I WAS
OVER -- LIKE I WAS A BABY.
AND THEN I HAD A MAJOR
SNOWBOARDING ACCIDENT AT THE AGE
OF 13 AND THE LYME DISEASE OR
WHAT WAS HAPPENING TO ME SEEMED
TO HAVE BEEN EXACERBATED.
AND IT WENT TO MY BRAIN AND I,
STARTED HAVING FAINTING SPELLS.
I, A LOT OF COGNITIVE ISSUES.
I, MY READING SKILLS WENT DOWN
THE DRAIN.
AND MY MEMORY AND RETENTION
SKILLS WENT OUT THE WINDOW.
>> YOU CARRIED A CAMERA AROUND
SO YOU COULD PHOTOGRAPH AND FILM
THINGS SO YOU WOULD REMEMBER
THEM.
>> YES.
>> AS A KID.
>> UNBELIEVABLE.
AND THE WORST PART OF IT, WHAT
WAS SO STRIKING AND SAD TO ME,
THE WORST PART OF IT, WAS NOT
EVEN ALL THIS PAIN FOR YOU.
IT WAS THAT PEOPLE DIDN'T KNOW
WHAT YOU HAD AND YOU, TELL US
ABOUT THAT.
>> IT'S KIND OF LONELY.
BECAUSE YOU FEEL A CERTAIN WAY
AND YOU'RE TOLD, OH, IT'S THIS
OR IT'S THAT.
BUT THERE'S NOTHING WE CAN DO
ABOUT IT.
AND YOU PROBABLY GOING TO BE
OKAY.
AND WHEN THE SYMPTOMS KEEP
GETTING WORSE, AND YOU KNOW, I
DON'T WANT TO SOUND LIKE A
COMPLAINER TO MY PARENTS, WHO
WERE DOING EVERYTHING THAT THEY
POSSIBLY COULD.
BRINGING ME TO ALL THE DOCTORS,
AND YOU KNOW, IT'S REALLY SCARY
NOT HAVING ANSWERS.
AND AT ONE POINT I HAD TO SHUT
MY MOUTH AND KIND OF GAVE UP.
>> YOU PUT UP WITH ALL THE
SYMPTOMS.
WERE YOU KIND OF LIKE YOU WERE
POISONED EVERY DAY.
YOU WERE SUFFERING FROM POISON,
BUT YOU HAD TO PUT UP WITH IT,
BECAUSE YOU SAY WELL, YOU
KNOW --
>> I THOUGHT EVERYONE WAS JUST
AS TIRED AS I WAS.
IT'S BEYOND FATIGUE.
BUT YOU'LL NEVER UNDERSTAND.
AND IT CAME TO A HEAD WHERE THE
SYMPTOMS WERE COMPLETELY
UNBEARABLE.
AND UNIGNORABLE.
IT WAS IMPOSSIBLE TO IGNORE THAT
THERE WAS SOMETHING SERIOUSLY
WRONG.
>> NOW, IT GOT TO A POINT AS I
SAID IN THE INTRODUCTION, WHERE
THE THINGS THAT YOU SAID WERE SO
ODD AND SOME OF THE THINGS THAT
YOU DID, WERE SO BIZARRE, THAT
YOUR FATHER AS I SAID, ASSUMED
THAT YOU HAD A MARIJUANA HABIT,
BECAUSE YOU HAD FACT, HE WENT TO
YOU ONE TIME AND SAID, WHAT CAN
I DO FOR YOU?
AND YOU SAID THE OHM THING CAN
YOU DO FOR ME IS GIVE ME MORE
POT.
WHY WAS IT, BY THE WAY?
>> THE MARIJUANA HELPED MY
NAUSEA, THE CHRONIC DEBILITATING
NAUSEA AND JOINT PAIN AND I WAS
TIRED ALREADY.
SO -- IT DIDN'T MAKE A
DIFFERENCE.
AND YOU KNOW IT GOT ME THROUGH
SOME REALLY PAINFUL TIMES.
>> HE DECIDED THE ONLY THING HE
COULD DO WAS COMMIT TO YOU A
PSYCHIATRIC HOSPITAL.
>> PHYSICALLY.
ON TOP OF THAT I WAS SUFFERING
FROM A NERVOUS BREAKDOWN AND NOT
MAKING SENSE.
I WASN'T ABLE TO PUT SENTENCES
TOGETHER.
I WAS BABBLING AND TALKING TO
MYSELF.
I HAD GONE CRAZY.
>> PSYCHOTIC.
>> THAT WAS PART OF THE LYME
DISEASE.
>> THAT'S CORRECT.
THAT'S CORRECT.
A LOT OF PEOPLE WITH LYME DO
HAVE PSYCHOTIC BREAKS AND
SOMETIMES DON'T RETURN FROM
THEM.
>> REALLY?
>> I'M VERY LUCKY AND VERY
GRATEFUL.
HE PUT ME IN A HOSPITAL.
THANK GOD.
>> YOU'RE GRATEFUL NOW,
SOMETIMES YOU THINK ABOUT IT AND
YOU SAY IT STILL MAKES YOU MAD.
BUT THAT SAVED YOUR LIFE.
>> IT DID.
>> EXPLAIN THAT.
>> WHEN I WENT INTO THE HOSPITAL
I WAS VERY ANGRY AND I HAD NO
IDEA WHY I WAS THERE, WAKING UP
IN A PSYCHIATRIC WARD.
IT WAS NOBODY'S DREAM, IT WAS
QUITE THE OPPOSITE.
IT WAS A NIGHTMARE.
AND AS TIME WENT ON, A WONDERFUL
DOCTOR THERE, DR. ELLEN SHANDER
BASED OUT OF STANFORD, SHE
REALLY LISTENED TO ME AND TOOK
ME SERIOUSLY.
AS A PERSON.
AND ONCE I GOT OUT OF THERE, I
SAT IN HER OFFICE AND I TRUSTED
HER ENOUGH TO SAY LISTEN, WE'VE
GONE TO MANY, MANY DOCTORS AND
NOBODY HAS DONE ANYTHING AND
THERE'S NOTHING, I FEEL
HORRIBLY, THESE ARE ALL OF THE
SYMPTOMS.
AND I'M STILL IN PAIN.
THIS IS WHAT I WAS TRYING TO SAY
BEFORE I ENTERED INTO THE
HOSPITAL.
AND THERE'S STILL NOBODY HAS
DONE ANYTHING ABOUT IT.
AND SHE SAID, I REALLY THINK YOU
HAVE LYME DISEASE.
AND I SAID OH, NO, NO, I'VE BEEN
TESTED FOR THAT THEY THINK IT'S
FIBROMYALGIA.
AND THE TESTS CAME BACK THROUGH
THE ROOF, LYME DISEASE.
>> SO AFTER YOU WERE DIAGNOSED,
YOU GOT THE CORRECT TREATMENT
AND YOU WERE GOOD AS NEW, RIGHT?
>> NO.
>> WHAT HAPPENED THEN?
>> I WISH.
WHEN I FOUND OUT THAT IT WAS IN
FACT LYME DISEASE, HARD-CORE
LYME DISEASE, I WAS LIKE YEAH, I
FEEL LIKE I WON THE LOTTERY.
YES.
YOU GO ON YOUR MERRY WAY TO THE
PHARMACY AND GET THE
ANTIBIOTICS.
AND UNFORTUNATELY, THEY, I MEAN
LISTEN, THEY DID A LOT OF GOOD.
THEY REALLY DID.
BUT AFTER A LONG COURSE OF
ANTIBIOTICS AND FEELING WELL, I
WOULD GO BACK TO WORK AND BACK
TO LIFE.
AND RELAPSE AGAIN.
AND THIS WENT ON, I'D HAVE TO GO
BACK ON ANTIBIOTICS AND ON AND
ON.
AND I TRIED EVERY ANTIBIOTIC,
EVERY TREATMENT.
MIXED WITH THE CO-INFECTION, THE
COUSIN TO MALARIA, IF YOU WILL,
IT IS MORE COMPLICATED THING TO
DEAL WITH.
AND YOU KNOW, SO MANY TIMES I
WAS LIKE -- I CAN'T DO THIS
AGAIN.
I CAN'T DO THIS AGAIN.
AND SO YOU KNOW WE TURNED TO
HOMEO DID THE PATHY AND CLEAN
LIVING AND MEDITATION AND
AYERVEDIC DOCTORS AND DETOXING
WITH DIFFERENT HERBS AND WE
MOVED TO CALIFORNIA AND
ULTIMATELY I THINK IT MADE IT
MORE MANAGEABLE.
>> HOW ARE YOU DOING NOW?
HOW ARE YOU FEELING NOW?
>> I MANAGED.
I MANAGE TODAY.
I'M ALSO ABLE TO BE HONEST WITH
MYSELF.
IF I'M STARTING TO FEEL UNWELL,
I HAVE A TOOLBOX.
AND I CAN DIVE INTO THAT TOOL
BOX AND CALL DIFFERENT
THERAPISTS OR HEALERS OR DOCTORS
AND DO DIFFERENT MEDITATIONS, GO
ON DIFFERENT DIETS, GO AND YOU
KNOW, SEE PEOPLE WHO MAKE ME
FEEL BETTER OR GO TO A PLACE
THAT MAKES ME FEEL WELL AND SAY
LISTEN, I HAVE TO DO A LITTLE
BIT LESS AND I'M KIND OF AN OX
IN THE CHINESE ZODIAC AND A REAL
WORKER AND I HAVE TO BE HONEST
ABOUT HOW I FEEL AND I HAVE TO
BE ABLE TO SAY LISTEN, I NEED TO
TAKE A LITTLE BIT OF A BREAK AND
TAKE CARE OF MYSELF.
>> AND THIS LYME DISEASE ONLY,
BITE BY A TICK, CAN YOU PASS IT
ON TO YOUR CHILD?
>> THAT'S NOT PROVEN RIGHT NOW.
RESEARCHERS ARE LOOKING INTO ALL
OF THAT.
FORTUNATELY, WHEN I BECAME
PREGNANT, I HAD A LOT OF DOCTORS
TEST ME AND YOU KNOW, THEY SAID
I WAS CLEAR OF ACTIVE LYME.
OF COURSE MY SYSTEM FLARES UP
SOMETIMES BECAUSE IT WAS DAMAGED
FOR SO MANY YEARS.
SO YOU KNOW THERE'S NO PROOF
YET.
THEY'RE LOOKING INTO ALL OF
THAT.
MY BABY GIRL IS HEALTHY AS CAN
BE AND HEALTHY AND SMART THANK
GOODNESS.
AND YOU KNOW, MAYBE OTHER
INSECTS CAN PASS IT ON, I'M
THINKING.
>> YOU KNOW THE THING THAT
SURPRISED ME, ONE OF THE REASONS
YOU WERE MISDIAGNOSED FOR 11
YEARS, AND I WAS SURPRISED TO
READ THIS IN THE BOOK, IS
BECAUSE DOCTORS HAVE A BIAS
AGAINST DIAGNOSING FOR LYME
DISEASE AND IN FACT THERE ARE
SOME DOCTORS STILL DON'T BELIEVE
THAT LYME DISEASE EXIST, HOW IS
THAT POSSIBLE?
>> I DON'T KNOW.
AND MAYBE THE ONLY EXPLANATION
THAT I CAN COME UP WITH, IS THAT
IT'S SO COMPLICATED.
AND SO DIFFICULT TO PINPOINT AND
TO UNDERSTAND, THAT THEY DON'T
UNDERSTAND IT YET.
AND WHEN YOU DON'T UNDERSTAND
SOMETHING, SOMETIMES YOU DON'T
WANT TO GET INVOLVED, YOU DON'T
WANT TO GET BLAMED.
THAT COULD BE IT.
IT'S BEYOND ME.
AND SO SADDENING AND FRUSTRATING
TO KNOW THAT THERE ARE PEOPLE
OUT THERE, SO SICK AND THE
DOCTOR IS LIKE NO, NOT GOING TO
ACKNOWLEDGE THAT.
>> HOPEFULLY SOME OF THOSE
DOCTORS WILL BE READING YOUR
BOOK.
HOW COMMON IS LYME DISEASE?
>> OH, MY GOODNESS, IT'S
SPREADING AT A RAPID PACE, IT'S
A GROWING EPIDEMIC IN OUR
COUNTRY.
IT IS ABOVE PROBABLY WHAT THE
CDC SAYS.
AND YOU KNOW, IT'S HUNDREDS OF
THOUSANDS OF AMERICANS IN 50
STATES AND 80 COUNTRIES.
AND PEOPLE ARE DYING.
PEOPLE ARE DYING FROM LYME
DISEASE AND PEOPLE DON'T KNOW
THAT, EITHER.
>> SO WHAT DO YOU SAY TO
SOMEBODY WHO IS SUFFERING FROM
THE SAME KIND OF DESPAIR AND THE
PAIN THAT YOU WERE SUFFERING,
FROM JUST A FEW YEARS AGO?
AND MAYBE LISTENING TO US NOW?
>> I WOULD SAY -- KEEP A GLIMMER
OF LIGHT AND HOPE AT THE END OF
THE TUNNEL.
WHATEVER THAT GOAL MIGHT BE.
MAYBE IT'S TO WRITE YOUR STORY
DOWN.
MAYBE IT'S TO BE ALIVE FOR YOUR
GRANDCHILDREN.
AND TO KEEP YOUR EYE ON THAT.
AND TO WATCH A LOT OF FUNNY
MOVIES IN BETWEEN.
YOU HAVE TO HAVE A SENSE OF
HUMOR AND LIFT YOUR SPIRITS,
BECAUSE YOU KNOW IN ANYTHING IN
THIS BOOK IS NOT ONLY FOR PEOPLE
WITH LYME DISEASE.
THIS IS FOR AWARENESS, IT'S
GREAT AWARENESS, BUT MY STORY
OFFERS A LOT OF HOPE.
WITH ANYTHING THAT ONE MIGHT BE
GOING THROUGH, AND TO KEEP YOUR
EYE ON THAT LIGHT.
MY FATHER TAUGHT ME THIS.
TO KEEP YOUR EYE ON THAT GOAL.
NO MATTER HOW DARK THAT TUNNEL
BECOMES, KEEP YOUR EYE ON THAT
LIGHT.
>> AND WHAT DO YOU SAY?
I MEAN SUMMER IS ALMOST UPON US,
PEOPLE ARE GOING TO BE GOING OUT
TO THE GREAT OUTDOORS, MANY OF
THEM TO WHERE TICKS PREDOMINATE
OR TICKS CARRYING LYME DISEASE
PREDOMINATE AND YOU SAY IT'S
MORE COMMON --
>> IT'S IN CENTRAL PARK.
IT'S IN KENTUCKY.
IT'S IN MISSOURI.
IT'S -- EVERYWHERE.
>> WHAT SHOULD PEOPLE DO?
>> SPRAY YOURSELF DOWN WITH TICK
SPRAY.
TICK SPRAY, TICK SPRAY, WHERE
LIGHT CLOTHING, TUCK YOUR PANTS
INTO YOUR SOCKS, YOU'LL LOOK
LIKE A DORK, BUT WHO CARES.
AND JUST SPRAY YOURSELF DOWN AND
CHECK FOR TICKS.
CHECK FOR TICKS.
THAT'S HOW MY MOTHER FOUND MY
TICK.
>> "BITE ME: HOW LYME DISEASE
STOLE MY CHILDHOOD, MADE ME
CRAZE REQUEST AND ALMOST KILLED
ME."
WHAT DO YOU HOPE TO ACCOMPLISH
WITH THIS BOOK?
>> AWARENESS, RESEARCH AND
EDUCATION.
AND TO FIND A MORE ACCURATE WAY
TO TEST FOR THE DISEASE.
SO THAT PEOPLE, MY DAUGHTER AND
HER GENERATION, NEVER HAVE TO
GET BIT BY A TICK AND GO THROUGH
WHAT I WENT THROUGH.
>> WELL, IT'S HEAROING BOOK, BUT
IT'S HARD TO PUT DOWN.
IT'S REALLY, REALLY WELL DONE
AND THANK YOU SO MUCH FOR
WRITING IT AND THANK YOU SO MUCH
FOR BEING HERE.
>> THANK YOU FOR HAVING ME.
>>> FOR MORE INFORMATION ON LYME
DISEASE, GO TO OUR WEBSITE,
"METROFOCUS".ORG.

Mutual of America PSEG

Funders

MetroFocus is made possible by James and Merryl Tisch, Sue and Edgar Wachenheim III, the Sylvia A. and Simon B. Poyta Programming Endowment to Fight Anti-Semitism, Bernard and Irene Schwartz, Rosalind P. Walter, Barbara Hope Zuckerberg, Jody and John Arnhold, the Cheryl and Philip Milstein Family, Janet Prindle Seidler, Judy and Josh Weston and the Dr. Robert C. and Tina Sohn Foundation.

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