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Living with Lyme disease
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Among the participants in St. Jude’s Rock ‘n Roll Half Marathon last Saturday was Warren County resident Erin Scott. The run of 13.1 miles was her way of remembering her struggle with Lyme disease. She is pictured with her husband Justin after finishing the race.

What’s it like to live with Lyme disease? 

Erin Scott says life is nothing like it used to be, but it has taught her to cherish every day like there may not be a healthy tomorrow.

“Before I got sick, I enjoyed running long distances,” said Scott. “I was very independent and active with my three children. Along with being an avid runner, I enjoyed being outside. We were always doing some kind of adventures and fun outings. In the fall of 2012, I ran a half marathon. At the end of that race I knew there was something very wrong with me.” 

She started having an array of symptoms from multiple organs: heart pain, digestive issues, numbness in hands, arms and legs, headaches, extreme fatigue, night sweats, muscle pain and cognitive issues. 

According to the Centers for Disease Control and Prevention (CDC), Lyme disease, transmitted through the bite of an infected tick, is the most common vector-borne illness in the United States. Each year, there are 329,000 new cases of Lyme disease reported. Despite that number, obtaining a proper diagnosis and treatment plan can be difficult. 

It was two years before Scott had her answer.

“I was sent to specialist after specialist without any diagnosis being determined,” she said. “I got down to 89 pounds and struggled daily to get out of bed. Finally in 2014, I was blessed enough to have the opportunity to go to Chicago, Illinois to a facility called Whole Health Chicago where I was under the care of a phenomenal doctor that put me under a scrutiny of tests. I was diagnosed that year in May.”

Ironically, May is Lyme Disease Awareness Month. 

Scott contracted Lyme disease in March 2012. 

Early symptoms within the first 30 days include fever, chills, headache, fatigue, muscle and joint aches, and swollen lymph nodes. A rash on the tick bite site occurs in approximately 70 to 80 percent of infected persons.

If diagnosed in the early stages, Lyme disease can be cured with antibiotics. Without treatment, the symptoms continue to worsen and include:

• Severe headaches and neck stiffness

• Rashes

• Arthritis with severe joint pain and swelling

• Facial palsy, a loss of muscle tone or droop on one or both sides of the face

• Intermittent pain in tendons, muscles, joints and bones

• Heart palpitations or an irregular heartbeat

• Episodes of dizziness or shortness of breath

• Inflammation of the brain and spinal cord

• Nerve pain

• Shooting pain or numbness in the hands or feet

• Problems with short-term memory.

Treatment was almost as bad as the disease’s symptoms, said Scott.

“That was a difficult, long year. I thought I would never feel well again. Being sick became my normal. Unfortunately if Lyme disease isn’t treated in its acute stage, symptoms could persist for years or even a lifetime due to the damage it does while it is actively in your system.”

Scott decided this was a challenge she would win. 

“I decided that I had to fight with everything in me to have daily quality of life. Life is what we make it to be, even with challenges unexpectedly thrown our way. One day at a time, I was determined that I wasn’t going to let anything defeat me. I still had three children that needed their mother, a husband that needed a wife, and a career of dental hygiene that I loved. I was not going to fail at the job God had given me.”

Following the debilitating year of treatment and a conscious decision that giving up would not be an option, Scott’s life has improved. 

“For the last five years, I have had to have a very healthy lifestyle with eating right and exercising daily. I began taking a variety of herbs targeting different ailments I was continually battling. I have definitely slowed down since my Lyme diagnosis, but I have learned to appreciate every feel-good moment of every day. I have to take care of myself by resting a whole lot more and making down time a priority. I also have to have acceptance that I am not what I once was and that has to be OK.”

Scott says her personal recipe for determination and success includes a faith in God, strong willpower, a devoted husband, and children who mean the world to her: Caden, Kylan, and Ashlyn.

She participated in St. Jude’s Rock ‘n Roll Half Marathon in Nashville on April 27 to remember her struggles and honor her accomplishments.

“I haven’t run more than four miles at a time since that day seven years ago. Without training, at 4 a.m. Saturday morning, my supportive son and husband took me to Nashville to run that race. It was a surreal experience as I ran that 13.1 miles as a Lyme disease warrior. I cried tears of joy as I crossed that finish line knowing that it came from my greatest strength ... God.”

Reducing exposure to ticks is the best defense against Lyme disease and other tick-borne infections. Avoid wooded and brushy areas with high grass and leaf litter, walk in the center of trails, and use EPA-registered insect repellents when hiking, camping, gardening, or hunting. Many people get ticks in their own yard or neighborhood. After you come indoors, check your clothing and body for ticks.