BY BARB BERGGOETZ
Susan Coleman’s mysterious health symptoms—headaches, fatigue, joint pain, fever, stiff neck, insomnia—began more than two decades ago. They would come and go, but she knew something was wrong. The difficulty was getting the right diagnosis.
She was eventually diagnosed with Lyme disease, an infection caused by the bacterium Borrelia burgdorferi and transmitted to humans through the bite of infected blacklegged ticks. That was in 2012. In 2014, the lifelong Bloomington resident joined with LeAnne Barta of Indianapolis and started the nonprofit group Indiana Lyme Connect.
The goal of the all-volunteer organization is to make Indiana a “Lyme literate state,” says Coleman, the state organization’s secretary and the Bloomington support group leader. “We discovered a need for educating doctors and people in the community,” she says. That includes offering information on symptoms, early detection, the unreliability of Lyme tests, and the growing threat of Lyme disease. There are 300,000 new cases diagnosed nationally each year. In 2016, the group sponsored Lyme disease courses for 130 medical professionals.
While her symptoms began in 1996, Coleman wasn’t diagnosed with Lyme disease until another tick bite in 2012 was treated as an allergic reaction. Steroids awakened dormant Lyme bacteria, causing seizures and stroke-like symptoms. She’s been taking antibiotics for five years and follows an anti-inflammatory diet. In 2014, as her symptoms got worse, Coleman had to leave a job she loved in University Information Technology Services at Indiana University. “I would be happy with a remission state allowing me to go back to work,” she says.
It’s this kind of struggle that makes the support group helpful. “We wanted to provide support and a place for people to share their experiences and journeys,” says Coleman, whose son, Rowan Morse, 15, was diagnosed with Lyme disease in 2012. “Participants at the meetings share details of their lives and suggestions to help each other. Lyme disease derails lives, interrupts careers. Relationships can be dramatically affected.”
Indiana Lyme Connect meets from 1:30 to 3 p.m. on the third Saturday of each month at the Monroe County Public Library. For more information, visit indianalymeconnect.org.