For Wiscasset resident Tina D’Amore, the first signs of trouble started in 2007 with the worst flu of her life.
“I could barely breathe or get out of bed,” said D’Amore, 43. “It would take me three breaths just to complete a sentence. I had no idea what was going on.”
A healthy, active kindergarten teacher in the tobacco town of Wendell, North Carolina before, what D’Amore thought was a normal case of influenza turned out to be the start of a three-year battle with undiagnosed Lyme disease. The ordeal would test her faith, her physical will, and ultimately her sanity as she sought answers from medical professionals baffled by her condition.
D’Amore believes she was infected while living in Freeport but did not develop erythema migrans, a tell-tale target-shaped rash which occurs in 70-80 percent of people in the early stages of Lyme disease. Despite this, D’Amore was tested for Lyme after her flu-like symptoms worsened in early 2008. It was a classic case of a false negative result and plunged her further into medical limbo.
“I couldn’t find answers no matter where I turned,” she said. “It started to get personal and strange. An infectious disease specialist thought I had syphilis and another thought HIV. Eventually you have to ask yourself; am I going crazy? Is this really happening?”
Despite a myriad of physical ailments making it impossible to live a normal life, D’Amore soldiered on. “I collapsed at the grocery store. I blacked out,” she said. “My hands and lymph nodes were swollen like I had the mumps.”
Months into her ordeal and unable to teach, D’Amore could no longer care for herself and lost her job as an administrative assistant in Yarmouth. “My employer thought I was a burden in the workplace and the department,” she said. “She was sick of hearing me cough. Literally nothing in my life made sense.”
Still baffled by her ailments, D’Amore accepted a severance package and moved to South Bristol to live with her parents. The disease exacted a toll on her personal life as she lost two boyfriends and personal friends.
“In a way I can’t blame them because it was too much and they couldn’t understand,” she said. “I felt like I lost years off my life.”
The darkest point of the self-described personal hell came when her legs stopped working while walking her dog. Trapped in the woods of South Bristol and unable to find help, D’Amore began to pray for divine intervention. Eventually she was able to regain enough strength to make it home and to nearby Miles Memorial Hospital in Damariscotta. Once again, doctors had no answers and the hand wringing continued. At various points D’Amore was diagnosed with non Hodgkins lymphoma, fibromyalgia, arthritis, lupus and even Huntington disease, a wasting disorder which claimed the life of folk music icon Woody Guthrie.
Her story is all too familiar here in Lincoln County where nearly 3,000 residents have been stricken with the tick-borne illness in the past decade, according to the Center for Disease Control. On an annual basis, Maine reports over a thousand new cases of Lyme disease, and the number is actually far greater due to the varied symptoms of the disease, according to the CDC. Lyme is difficult to diagnose as symptoms can include joint pain, chronic fatigue and inflammation that mirror other ailments. Lyme disease is caused by a bacterium, Borrelia burgdorferi, which is transmitted to a person through the bite of an infected deer tick.
Paula Jackson-Jones is the founder of Midcoast Lyme Disease Support and Education, a Damariscotta-based nonprofit dedicated to the prevention, support and awareness of Lyme disease in the Midcoast. Jackson-Jones said D’Amore’s story is the result of a medical community ignorant of tick borne diseases and apathy at both the state and federal level.
“The test to diagnose Lyme was developed in the 1970s,” she said. “We are applying archaic tools to a disease that has evolved.”
Her organization provides everything from advocacy to support groups and has helped nearly 2,000 people in just over two years.
“It’s a 24/7 job,” said Jackson-Jones. “People will call with questions: Have I been exposed? What does the tick look like? They also call when doctors don’t believe them because doctors are not made aware of what to look for.”
Like D’Amore, Jackson-Jones spent years suffering from tick-borne disease before finally receiving a proper diagnosis. At various points her neurological problems led to a diagnosis of ALS — Lou Gehrig disease — and also multiple sclerosis. In two years, she saw 23 specialists in total and felt the social stigma associated with tick-borne diseases, an out of sight, out of mind misconception of what appears to be a healthy adult. She believes part of the problem is rooted in conflicting ideas of what treatments are most effective.
“The medical community and researchers can be at odds,” she said. “The best interests of the patients aren’t always considered. We know with many diseases most people respond differently to certain types of treatment. Those patients still sick are now potentially being misdiagnosed, mistreated, or under-treated.”
The turning point for D’Amore came from a home healthcare worker who suggested guidance from an unlikely source. Desperate to maintain her sanity, D’Amore met with a shamanic healer.
“She told me I have a shamanic illness and that it could be Lyme disease,” said D’Amore. “I felt like if I didn’t go with this, I was going to lose my life.”
Based on the shaman’s intuition, D’Amore finally found a doctor who gave her the diagnosis she had been waiting years to find. Treatment began immediately and D’Amore is three years into her remission. Now able to live an independent life, D’Amore recently joined the Sea Glass Spa in Boothbay as a licensed aesthetician and energy healer. The illness exacted a toll and took years off her life but the journey has led her to a better place, she said.
“It’s validation to know I wasn’t losing my mind,” said D’Amore. “Things will never be the same but opportunities arise.”
Through her organization, Jackson-Jones shares her story with others throughout the state and is a tireless advocate of public awareness. “I don’t want someone to go through what I did,” she said. “The assumption is tick-borne illnesses are hard to catch but easy to cure. They look at you and say ‘Are you really sick at all?’”