When Becky Stokes was diagnosed with Lyme disease, it was a life-changing moment. At the time, she was a 21-year-old college student studying to be a nurse. As the years passed, Stokes’s symptoms continued and Lyme disease became just another part of her daily life. Lyme disease, she said, can lead to a slow death if left untreated.
These days Stokes, who lives near Dallas, devotes a great deal of her life fighting Lyme disease through education and outreach. As a member of the Endless Mountains Lyme Disease Support Group, Stokes helps organize programs that raise awareness, providing support for those who have been diagnosed but do not necessarily know where to turn. Recently, the group organized a screening of Under Our Skin, a documentary that explores Lyme disease, at the Dietrich Theater in Tunkhannock.
“It was a very successful event,” Stokes said. “Anything that can help get the word out is good.”
One question- What is the hardest thing about having Lyme disease?- opened an emotional window for Stokes. Some days are fine for her, while others are painful and debilitating. She visits the gym regularly, which seems to mitigate her symptoms, and maintains a healthy diet. Yet, despite her attempts, the effects of Lyme disease often win.
“Some days I can sleep for 15 hours, wake up, and still feel sleep deprived,” she said. “It can ruin every area of your life if it is not managed correctly.”
Lyme disease, a tick-borne condition, is a bacterial infection primarily spread through the bite of a black-legged (deer) tick. Manifesting itself as a multisystem inflammatory disease that affects the skin in its early stage, Lyme disease spreads to the joints, nervous system, and later, to a lesser extent, other organ systems. According to the Centers for Disease Control and Prevention (CDC), it is one of the fastest-growing diseases in the United States. If left untreated, Lyme disease can kill.
With its vast forests and large deer populations, Pennsylvania is an ideal breeding ground for Lyme. Ticks are most prevalent in the spring, but with warmer temperatures and a mild winter, Lyme disease has had a chance to spread unabated in recent months.
Christa Vanderbilt, Ph.D., is a member of the Lyme Disease Association of Southeastern Pennsylvania (LDASP). Founded nearly eight years ago, LDASP’s mission is to educate the public, and it operates a hotline, which received an average of 75 calls each month from January through March of this year – an unusually high number for the winter months.
“The ticks are out unless the temperature is below freezing,” she said. “We didn’t have a lot of that this winter.”
Another problem regarding Lyme disease, which Vanderbilt pointed out, involves politics. The problem is two-fold. First, Lyme disease is not universally recognized as a chronic illness and, as a result, insurance companies are hesitant to pay for long-term care. Second, after being bitten by a tick, a person can develop a “co-infection”, defined as “the simultaneous infection of a host by multiple pathogens.” This phenomenon often leads to misdiagnosis.
“We know that 30 days of treatment does not cure Lyme disease,” Vanderbilt said, “But, that is not what insurance companies would have you believe. Patients need support because many doctors do not know how to treat this disease properly.”
Stokes noted that there is a debate among epidemiologists, medical clinicians, and insurance companies about whether chronic Lyme exists. When asked what she thinks, however, Stokes echoed Vanderbilt with the same passion and intensity.
“Chronic Lyme exists,” she said. “I am absolute proof of that.”
According to the American Lyme Disease Foundation, manifestations of the disease were first reported in medical literature in Europe in 1883. Clinical signs were noted as separate medical conditions until 1975, when an outbreak of apparent juvenile arthritis preceded by a rash was noted among residents of Lyme, Connecticut.
While the medical community continues to debate, Stokes plans to continue her work, telling her story and raising awareness to help fight Lyme disease. As a registered nurse, she hopes to someday establish her own practice, helping others to overcome the disease.
“Anyone can help get the word out,” she said. “But, I believe it is going to take 15-20 years to get where we need to be.”
For more information about Lyme disease, please contact Robin Lynn at the Endless Mountains Lyme Disease Support Group at
or the Lyme Disease Association of Southeastern Pennsylvania at (610) 388-7333.