MDNews - Central New York

Targeting Tick-Borne Disease A YEAR AND a ha lf ago, career strategist and coach Anne Messenger was experiencing unusual fatigue, a symptom her provider attributed to sleep apnea when she went in for a routine annual physical. "I yawned all the way through that appointment," Messenger says. "But I also had other symptoms that were affecting my quality of life." In addition to the debilitating exhaustion, Messenger had heart palpitations, pain in her left foot, a strange tickling sensation in the back of her neck and brain fog that interfered with her ability to remember something as simple as the current score during a game of tennis. It would take the counsel of another medical professional whose children were devastatingly impacted by Lyme disease to finally offer a possible explanation — Messenger may have Lyme disease herself. To get to a definitive diagnosis, Messenger consulted Kristopher Paolino, MD, Assistant Professor in the Department of Medicine at State University of New York Upstate Medical University. "Dr. Paolino is Upstate's Lyme person," Messenger says. "He figured out my diagnosis and invited me to a research conference at Cornell University." At that conference, the Central New York Lyme and Tick-Borne Disease Alliance began to take shape in the minds of people who could make a difference. Clinicians, researchers, scientists and higher education executives from Cornell University, Binghamton University, SUNY College of Environmental Science and Forestry and Upstate Medical University were gathered together, investigat- ing opportunities for translational research and collaboration. "Multiple times in multiple ways, I heard scientists in the back of the room say they needed patients to observe," Messenger says. "That happened again and again." CNY Lyme Alliance members tour Thangamani Tick Lab at SUNY Upstate in Central New York BY K ATY MENA-BERKLEY THE CENTR Al NE W YORK lYME AND TICK- BORNE DISE A SE AllIANCE IS ON A MISSION TO ER ADICATE INCRE A SINGlY PRE VAlENT TICK- BORNE IllNESSES THAT HAVE HISTORICAllY GONE UNDE TECTED IN CENTR Al NE W YORK. Syracuse resident Royale Scuderi came to Messenger's mind as she brainstormed about an organization that could effectively address the challenges of tick-borne disease. LIFE WITH LYME DISEASE Diagnosed with late stage Lyme disease in March 2011 and with another tick-borne disease known as Babesia just four months later, Scuderi knew first-hand about the life-changing consequences of not having the right information at a critical time. "I did not see a tick, nor did I have the bull's eye rash," Scuderi says. "Consequently, there is no way to discern how long I was infected with those diseases prior to my diagnosis. I do not remember when the symptoms started, but if I had the typical flu-like symptoms, we dismissed them as just that, flu or a virus. Lyme was not something that I or my doctors even considered." For months before her diagnosis, Scuderi experienced a widening range of debilitating symptoms, among them recurring headaches, nausea, joint pain, severe fatigue, and neck and back pain. She also began to develop fever, chills, shortness of breath, heart palpitations, stiff neck, insomnia, mental fogginess, difficulty concentrating and problems recalling words. "As my health declined, I visited doctor after doctor," she recalls. "I was tested for autoimmune diseases, cardiac conditions, pulmonary complications and allergies, along with an MRI to look for multiple sclerosis or neurological causes. I was misdiagnosed with arthritis and fibromyalgia. I was told repeatedly that the test results all looked normal and they could find nothing wrong with me." A local clinician finally tested Scuderi for Lyme and treated her with doxycycline. But relief of her symptoms was brief, as the Babesia co-infection further compromised Scuderi's health. After consultations with a specialist in Long Island, and another year of treatments, Scuderi finally began to find some relief, but only after the tick-borne diseases cost her significant time, money and wellness. It was three years before Scuderi could return to her normal daily activities. "The toll of this long journey caused enormous hardship and suffering for myself and my family, along with years of lost wages and the end of a career as a freelance writer, as I could no longer form coherent thoughts," Scuderi says. "It took several more years to eliminate the substantial debt incurred as a result of lost wages, treatments not covered by insurance and extensive travel." Scuderi says that when Messenger approached her during sum- mer 2019 with the concept of an organization that would bring together clinicians, patients, researchers and advocates in an effort to solve the mysteries of tick-borne disease, she was eager to get involved. Today, Scuderi has turned her experience into action and serves as Project Manager for the Central New York Lyme and Tick-Borne Disease Alliance. "The hope is that we can help attack the Lyme and tick-borne illnesses in our region through education and outreach to medical providers and to the community at large," says Dr. Paolino, who is one of the founding members of the Central New York Lyme and Tick-Borne Disease Alliance. "We will also approach the problem via research initiatives that target environmental factors to help 2 0

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