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 Presbyterian, which has a Lyme Disease clinic.”
Doctors 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.”
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.