72 LONGISLANDPRESS.COM • JUNE 2018
LYME DISEASE:
FIGHTING FOR PATIENTS’ RIGHTS
By MICHELLE GABRIELLE CENTAMORE
After being bitten by a tick while
hiking in Connecticut two decades
ago, then-Wesleyan University
student Brad Schwartz visited the
college medical center, getting a
clean bill of health.
After the bite and testing negative
for Lyme disease, Schwartz began
experiencing Lyme symptoms,
several months later: lower back
pain, joint pain and swelling,
headaches, and trigeminal
neuralgia on the side of his face.
One year later, he developed a
limp. Schwartz says that the lack
of advanced and reliable testing,
comprehensive treatment, and
health insurance coverage to
appropriately treat late-stage Lyme,
wreaked havoc physically, mentally
and emotionally and affected his
family financially. He says his
experience is not unique.
“Upon recovery, I became
determined to stand
up for patient rights
and universal access to
affordable healthcare,”
says Schwartz, the
Democratic challenger
to New York State Sen.
Elaine Phillips (R-Flower
Hill).
Schwartz says the odds were
against him because the
only test available when
he was bitten was the
ELISA test.
“The test is susceptible to false
negatives, especially in earlier-stage
Lyme where the body has yet to
produce higher levels of antibodies,
which is what the test looks for,”
says Schwartz.
He sought answers and relief from
rheumatologists, neurologists and
orthopedists. One practitioner
misdiagnosed him with a rare
autoimmune condition and
prescribed immunosuppressants.
“That likely further worsened my
illness,” Schwartz says.
Despite his illness, Schwartz earned
a master’s degree and pursued a
career in film and television.
“By the time I turned 29 my body
crashed,” he recalls. “I lost almost 60
pounds and could barely
get out of bed. My
family took me to
the Mayo Clinic
and Columbia
Presby ter ia n,
which has a
Lyme Disease
clinic.”
D o c t o r s
administered
the new Western
Blot test.
Schwartz tested
positive. While
relieved to have
answers, there
was still much
frustration.
“We ended up spending years and tens
of thousands of dollars going down a
rabbit hole while the illness decimated
my body and finances,” he recalls.
But Schwartz wasn’t out of the
woods. He learned that treating
Lyme so late would take more than
antibiotics.
“Without agreement among the
medical community on how to treat
late-stage Lyme, and insurance
companies unwilling to cover
most treatments, my family and I
began another frustrating journey
going from doctor to doctor and
spending large amounts out-ofpocket,”
he says.
Schwartz says that the protocol for
treating late-stage Lyme needs to be
changed.
“Unfortunately, there are many in the
medical profession who still believe
a two-week protocol of antibiotics
cures late-stage Lyme,” he says. “Of
course, the premise of treating any
disease in a late or advanced stage
with the exact same protocol as
treating early onset is entirely faulty.”
“Lyme is expensive to treat,” he
adds. “So, in addition to battling the
disease, patients are subject to this
battle with healthcare companies–
left to choose between getting better
or going broke.”
Schwartz says that creating
awareness is critical, beginning
with testing.
“Anyone suspected of having
Lyme disease should receive both
available tests—the ELISA and
Western blot,” says Schwartz.
Physicians need to inform their
patients that both tests are not
reliable and false positives are
possible.
“This is a law I would like to see
passed here in New York State and
which I would strongly fight for if
elected to the state Senate.”
PRESS HEALTH
TICK
PREVENTION TIPS
Lyme disease is transmitted
through the bite of an infected
black-legged or “deer” tick.
Between 2013 and 2015, 22,545
cases were reported in New York.
Up to 10 percent go unreported,
according to the Centers for Disease
Control.
Dr. Scott Campbell, director of
Suffolk County’s Arthropod-Borne
Disease Laboratory, offers some
preventative tips:
Dress appropriately. When near
tall grass, bushes, especially, cover
skin with long pants or socks.
Apply tick repellent. It acts as a
chemical barrier.
Do frequent tick checks. Lyme
is transmitted between 24 and 48
hours.
Put clothes in dryer upon removal.
Ten minutes will kill a tick.
Remove ticks carefully. Reach
close to the skin and pull straight
up. Avoid squishing. Put tick in
rubbing alcohol; save it in a dated
container if needed for testing.
Consult a physician following a
bite or if you have symptoms.
Symptoms could include a (bull’s
-eye) rash, headaches, joint pain,
swelling or stiffness, aches, and
fatigue.
Brad Schwartz