Lyme disease awareness has steadily increased over the last several years, along with the rise in tick populations in Maine.

Paula Jackson Jones and Angele Rice, founders of Midcoast Lyme Disease Support and Education, know what it’s like to deal with the disease first-hand. They both experienced it, and came out of the experience wanting to advocate for others who are going through the same struggle.

“Once we shared our personal experiences, we knew we had to forge an easier path to resources for people,” said Jackson Jones, who was affected by the disease neurologically, and at times was faced with a brain that wouldn’t cooperate and doctors that struggled to tell her what was wrong.

“I was not able to even put sentences together. What I was thinking in my head was crazy and what I was saying was crazier,” she said.

Rice had been sick since she was bitten by a disease-carrying tick at 13 years old. She was finally diagnosed at 30, as a young mother coping with a painful illness.

“I was a young mom with a young child trying to navigate a very complicated illness,” she said. She, too, saw a seemingly never-ending set of doctors before finally getting information and treatment that has improved her life.

“I talk prevention because I don’t want them to go through what I have gone through,” she said.

The formation of MLDSE came out of that desire to inform others and bring together experts in the field to educate both those who suffer from the disease and those who could be exposed to it.
“We’ve been there. We can relate to the pain, frustration, and struggle that they are going through. We understand what’s hard to put into words because we’ve been through it first-hand,” said Jackson Jones.

The disease itself has evolved beyond the classic “red ring around a tick bite” that people know so well, which is another fact that MLDSE strives to spread. Diagnosing Lyme and the many other tick-borne diseases that often accompany it can sometimes require cutting-edge techniques, and Jackson Jones and Rice both work hard to spread information to both doctors and patients.

The pair run all-volunteer, nonprofit support connecting those who believe they might suffer from Lyme disease to the specialists and experts they need. They also run the free annual Midcoast Lyme Disease Support and Education Conference that brings experts – both national and international – to Maine. The fourth annual one will be held from 8 a.m. to 5 p.m. April 28, at the Augusta Civic Center.

The organization, started just four years ago, has already garnered national attention and grown far beyond the wildest dreams of either Jackson Jones or Rice. The most recent development has Jackson Jones sitting on the U.S. Department of Health and Human Services Tick-Borne Disease Working Group, Access to Care Services and Patient Support subcommittee, where she’ll be assisting lawmakers on a national level with the ever-evolving need for awareness and action regarding tick-borne diseases.

The organization is also the Maine partner of the National Lyme Disease Association, members of Maine’s CDC Vector-borne Work Group, active in Maine’s Lyme legislation, and more. They’re busy year round on both a local and national level, advocating for people going through Lyme disease, and their services are available statewide.

Jackson Jones also manages to write a weekly column called Lyme Time that runs in newspapers throughout the state (including, occasionally, the Coastal Journal) in between all the other work she’s doing.

Yet, despite an increasingly busy schedule, the pair still strive to be there 24-7-365 for people who need it.

The goal is to prevent future cases of Lyme disease, and for anyone unlucky enough to contract it, to prevent the kinds of experience that Jackson Jones and Rice went through.

“There is hope, there’s always hope,” said Jackson Jones.

For more information about MLDSE, visit, email [email protected], or call 446-6447.