By Shimmy Blum
On Sunday evening, the West Deal Shul in Deal, NJ, hosted a trailblazing event that made a life altering impact for those suffering from Lyme Disease and related diseases, and helped raise awareness that can spare countless others from these debilitating – and enigmatic – diseases.
The event was arranged by the Life for Lyme organization, a division of the Orthodox Jewish Chamber of Commerce’s Health and Medical Alliance, whose chairman Dr. Robert Mozayeni, is the preeminent expert in the field and serves as president of International Lyme and Associated Diseases Society (ILADS). In addition to a strong representation of men and women from the Deal area community, attendees from Brooklyn, Lakewood and other communities in the region flocked to this event as well. It was life altering for all in the room.
Although the term “Lyme Disease” is familiar to all, this disease is shrouded in mystery in misinformation, not only amongst the general public, but also amongst many medical professionals and institutions.
Not everyone afflicted with Lyme or a related disease sees the telltale “bullseye” rash. And there are an incredibly wide array of potential Lyme symptoms that relate to virtually every body function – plus mental illness symptoms – which makes diagnosis incredibly difficult. Furthermore, many of the conventional tests are unreliable, leading to false negatives. And once Lyme disease is missed or misdiagnosed upon onset, it can take years of grueling pain, weakness, treatments and/or serious illness before the body is cleared of the disease – if at all.
Attendees at this event shared their personal experiences with Lyme Disease, or those of their close friends or relatives. They heard from the leaders and volunteers of Life for Lyme, who have delved deeply into this area of medicine and are uniquely familiar with all its intricacies. They heard from others with similar experience. They received a hefty dose of chizuk and, more so, practical guidance on how they can properly diagnose and treat their conditions.
Under the leadership of Dr. Mozayeni, Life for Lyme helps guide patients towards the most competent physicians in the field, as well as towards the most advanced testing – all of which most patients would be unaware of if they followed the conventional medical path. Dr. Alain Mass, a prominent Monsey area physician who is uniquely familiar with Lyme Disease, came to Deal to address the audience. Dr. Mass shed much needed light on the disease and its many misconceptions, offering solid medical guidance to all in the room.
Chamber of Healing
“Over the years, the Orthodox Jewish Chamber of Commerce has built a formidable network in all industries, including the ‘Health and Medical Alliance’ in the healthcare industry,” explained Duvi Honig, Founder and CEO of the Chamber. His wife, Esther Honig, cofounded Life for Lyme as a division of the Alliance along with activist Menachem Resnick. “We are utilizing this powerful network,” Duvi explained, “to change the landscape regarding awareness and understanding of Lyme Disease at all levels – patients, families, doctors, hospitals, insurance companies and the government.”
The Deal event follows a similar event that was held in Brooklyn last month in coordination with Sephardic Bikur Holim (SBH). A powerful audiovisual presentation was shown, where several individual who were previously, or are currently, afflicted with Lyme Diseases shared their experiences. In addition to shedding light on the challenging diagnosis, symptoms and treatment regimens, the speakers shared the emotional toll that often comes along with the saga. Particularly, since the disease’s symptoms and diagnoses are so ambiguous, sufferers are often dismissed, even by their close family members, and told that they’re “imagining things” or faking illness.
Esther Chrem, a Life for Lyme activist, shared her experiences with the disease and spoke of what a difference Life for Lyme is making by providing invaluable guidance and public awareness. She stressed the importance of early diagnosis and treatment when symptoms are first noticed, rather than a “wait and see” approach that some resort to – which significantly complicates treatment options. “Thirty days of antibiotics can be unpleasant but the alternative can be years of suffering,” Esther implored.
On its online and WhatsApp support groups, as well as in one-on-one consultations, Life for Lyme’s counselors and patients network with each other, offering guidance, hope and understanding. Avrumi Safier, who does case work and guidance through Life for Lyme, relates that the Deal event’s incredible impact was evident immediately. In the days following the event, scores of men and women reached out for guidance and are making enormous strides in their diagnosis and treatment paths. Additionally, he has heard from several Lyme patients that, as a result of the awareness at the event, their relatives and friends no longer dismiss their suffering – and are instead offering them sympathy and assistance.
Beyond this event, Life for Lyme distributed over 2,500 brochures in over 125 bungalow colonies this summer, opening the eyes of countless Lyme sufferers and their families.
Lobbying the Government
Adding to the steep challenges of a Lyme Disease patient is the fact that it is very difficult to obtain proper insurance coverage for necessary diagnosis and treatments.
Since conventional testing and treatments are often ineffective, insurers tend to deny claims related to advanced testing and treatment options as “unnecessary” and/or “inconclusive.” Similarly, since symptoms and tests are so difficult to nail down, patients often require frequent and/or lengthy physician visits – beyond what insurers traditionally allow. This unfortunately presents many Lyme patients with staggering out of pocket costs for medically necessary treatment even if they have proper insurance. Even worse, many patients delay or forgo proper treatment as result – causing untold suffering.
Life for Lyme is aggressively lobbying government officials at all levels with awareness about the disease and related insurance challenges, and will not rest until governmental and insurance resources properly cater to the needs of Lyme patients. Shortly after the Deal event, Duvi Honig reached out to New Jersey Governor Phil Murphy to discuss Lyme related issues. Within days, he held a lengthy teleconference with New Jersey Health Commissioner Shereef M. Elnahal, M.D., M.B.A., discussing these issues, and especially the urgent need to mandate insurance coverage. A bill mandating Lyme coverage is currently pending in the State Assembly.
Commissioner Elnahal expressed the respect that he and Governor Murphy have for the Orthodox Jewish Chamber of Commerce and its work. He vowed to work diligently on properly utilizing the State’s healthcare infrastructure on behalf of Lyme patients, as well as working towards passing the crucial pending legislation. The commissioner invited Life for Lyme to the State House in order to coordinate various Lyme related initiatives with the State. An official delegation led by Dr. Mozayeni and Duvi Honig will head to Trenton in the near future.
“We are thankful to Governor Murphy and Commissioner Elnahal for being so attentive to the needs of Lyme patients and dedicated to making a difference,” says Duvi Honig. “We look forward to continue working together with a diverse group of leaders in our powerful network to bring hope and healing to patients across the Garden State and the nation.”