As summer nears, many Hasidic communities in Brooklyn are beginning to prepare for holidays in New York’s Catskill Mountains, long the preferred destination for religious families looking for a reprieve from urban life.
Yet amid the rolling green hills and low-slung bungalows, live ticks — tiny creatures that have infected many vacationers with Lyme disease, including members of the religious Jewish community.
Several Hasidic women in Brooklyn suffering from Lyme disease have recently formed a support group called Yesh Tickva, a play on the Hebrew phrase for “There’s hope.” The women have met a handful of times to share medical and emotional resources.
They also plan to spread awareness about the disease, ensuring that Hasidic city dwellers understand the danger of tick-borne illness and how best to protect themselves. The group’s plans include placing advertisements in local papers warning about the disease and speaking with doctors, camp mothers and members of Hatzolah — the Hasidic volunteer ambulance service — about symptoms.
“Because I’m on the road to recovery, I felt a responsibility to give back to my people,” said Chumy Klughaupt, the founder of the group. “Who knows how many people are suffering, running from doctor to doctor. With this awareness, we can save their lives.”
“All it takes is one minute,” said Rachel Isaacson, a 54-year-old grandmother from Boro Park and a member of Yesh Tickva. “It doesn’t take weeks or a day. All you need is one nasty tick with a lot of diseases.”
Lyme disease is caused by bacterium carried by ticks, which is then transmitted to humans through a bite. Because of its varied symptoms, the infection can be difficult to diagnose. While some may develop a rash following exposure, the most common symptoms are severe fatigue, poor sleep, trouble with concentration, lightheadedness, irritability, headaches and joint pain. Left untreated, Lyme disease can affect the nervous system.
“Often, if you find that you’ve seen a doctor and you still are ill with some kind of chronic condition, it’s worth looking again at Lyme disease, even if your tests don’t show it,” explained Daniel Cameron, an internist and epidemiologist in Mount Kisco, New York. Cameron has been treating Lyme disease since 1987 and has seen thousands of patients who have become sick from ticks.
Isaacson went to “at least 15 doctors” before a close friend recognized that her symptoms were similar to those of her sister, who suffers from Lyme disease. In the summer of 2003, Isaacson had visited her children in Sullivan County. Two weeks after returning home, she developed flulike symptoms and began having trouble breathing, gastrointestinal distress, and numbness and tingling in her extremities. She described feeling “extreme brain fog” and as though “she was solidified with cement.”
Rachel G., a 37-year-old mother of three from Boro Park, was sick for roughly 15 years before receiving her diagnosis of Lyme disease. (She asked that her last name be omitted for privacy reasons.) After the birth of her first child, she went to Monticello to recover and spend time with her mother. Upon returning to Brooklyn, Rachel G. began having crippling migraines, which persisted for years. She also experienced recurring urinary tract infections, bronchitis and inflammation of multiple joints.
“My life was literally put on hold,” she said. “It came to a point that the headaches were so severe, I used to get seizures from them.” She went to the Mayo Clinic in Rochester, Minn., for her seizures, which by then were occurring almost daily. There, she was diagnosed with nonepileptic seizures. But Rachel G. wasn’t getting better.
“I was a 28-year-old, and I was taking more medication than an 80-year-old grandmother,” she said. Only when Rachel G. read an article in Binah, a weekly magazine for Jewish women, about a young community member afflicted with Lyme disease did she realize that this was likely the culprit. A New York City physician later diagnosed her with Lyme disease; she is now undergoing treatment.
The Catskills, which comprise Sullivan, Ulster, Delaware and Greene counties, is known as “tick central.” According to the Centers for Disease Control and Prevention, between 2007 and 2011 there were 256 reported cases of Lyme disease in Sullivan County. However, Cameron suspects that the vast majority of incidents are not reported, and so the number is likely 10 times this amount. There are no statistics on Lyme disease in the Hasidic community.
“It’s a region for which I would probably use the word hyper-endemic,” said Kenneth Liegner, a physician in private practice who treats Lyme disease. “The lower Hudson Valley is one of the biggest hotspots for Lyme in the country, if not the world.”
In Brooklyn, Yesh Tickva hopes to educate the Jewish community on how Lyme disease can pose a serious threat to one’s health.
Isaacson described last summer as “an epidemic” due to the mild winter, which allows ticks to arise from their dormant state earlier than usual. She recounted how she received phone calls daily from community members worried they may have contracted a tick-borne disease in the mountains.
Rachel G. believes all parents and physicians should be aware of Lyme disease when their children return from camp.
“I think it should become mandatory that a part of the well visits [checkups] after the summer should be Lyme testing, and people can get diagnosed right away,” Rachel G. said.
But primarily, the group provides support to those battling the illness. The first meeting included members of the Orthodox community suffering from Lyme disease, and caregivers of those with the illness.
“In our community, there is so much support for everyday life,” Rachel G. emphasized. “If anyone is diagnosed with cancer, there’s an organization that will set them up with insurance…. There’s a spina bifida support group. There’s an infertility group going through [in vitro fertilization].”
“For most of us in Yesh Tickva, we have been similarly incapacitated as cancer patients, although without the benefit of a support system,” Rachel G. added. “I was lost, and no one understood me. Yesh Tickva is about finally belonging somewhere.”
“We all say, ‘Maybe God will answer our prayers, we will all be healed, help the people the way we needed help,’” Rachel G. said.
Danielle Schlanger is a graduate student at Columbia University. Her freelance work has appeared in The Huffington Post, The New York Daily News, The New York Post, Business Insider and The New York Times’s blog on Fort Greene and Clinton Hill.