The Central New York Lyme and Tick-Borne Disease Alliance is on a mission to eradicate increasingly prevalent tick-borne illnesses that have historically gone undetected in Central New York.
CNY Lyme Alliance members tour Thangamani Tick Lab at SUNY Upstate
A year and a half 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, investigating 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.”
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.
Group presentation in Old Forge, New York (Left to Right): Kathy Ruscitto, Vice Chair; Kristopher Paolino, MD, MTM&H, FACP; Anne Messenger, Alliance Board Chair; Brian Leydet, PhD, SUNY ESF; Scott Santarella, CEO, Global Lyme Alliance
“It is clear that delay in diagnosis and initiation of treatment of Lyme disease can result in increased morbidity with increased risk for chronic symptoms. Missing a case of anaplasmosis can have dire consequences.”
— Kristopher Paolino, MD, Assistant Professor in the Department of Medicine at State University of New York Upstate Medical University
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 summer 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 Executive Director 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 with prevention, as well as laboratory and clinical studies.”
Addressing a Growing Concern
Investigating the rapid rise of tick-borne disease is one of the chief objectives of researchers like Brian F. Leydet Jr., MPH, PhD, Assistant Professor of Epidemiology & Disease Ecology in the Department of Environmental and Forest Biology at SUNY College of Environmental Science and Forestry. In his research, Dr. Leydet, who is also on the board of the Central New York Lyme and Tick-Borne Disease Alliance, saw a spike in tick-borne disease in the region in 2008, an uptick that has not slowed.
“If we don’t think about stopping the spread of ticks in this area, then eventually, they are going to be everywhere,” Dr. Leydet says “We will also see increases in cases of tick-borne diseases, like Lyme disease, Babesia and anaplasmosis, unless we can figure out vaccines or some miracle method to wipe out the entire tick population. Once ticks are established, they are very hard to get rid of. We need to stop these ticks from spreading, because that is what is bringing disease into new areas.”
In partnership with area infectious-disease clinicians and scientists also involved with the Alliance, Dr. Leydet is working to advance diagnostics and vaccines for tick-borne diseases.
“I cannot think of a place where this would work better than in Syracuse,” Dr. Leydet says. “All I do is study tick-borne disease. The infectious disease clinicians are doing so many different things with patients and the local university experts have important insight into what is going on in the community. The Alliance will be a source of very unique information for patients and clinicians alike.”
A Resource for the Underserved
Due to lack of access to financial and medical resources, tick-borne disease has historically gone undetected and untreated in underserved communities such as the inner city, another challenge that the Alliance is seeking to address.
“So many families do not have access to the care they need, and when they are finally diagnosed, they are not covered by insurance,” says Kathy Ruscitto, Vice Chair of the Central New York Lyme and Tick-Borne Disease Alliance. “Early treatment is essential.”
Brandiss Pearson, RN, Director of Community Engagement at Saint Joseph’s Health Hospital, was recruited to join the Alliance as a board member and to closely connect with inner-city communities.
“Underserved individuals are often not able to get the support they need,” Pearson says. “My role gives me the opportunity to speak about Lyme in a way that I would not have been able to before.”
One of the earliest initiatives of the Alliance is a grant for outreach to those in the region’s underserved neighborhoods.
“It is perplexing to me that we fight mosquitos, treat EEE, yet we have no strategy for tick control, eradication or treatment,” Ruscitto says. “Our goal in the Alliance is to help connect research, education, and treatment to help the residents of New York.”
To learn more, visit cnylymealliance.org.