By Emma Bouthillette 

Staff Writer

Lyme disease has increased by 66 percent since 2006, a trend reflected throughout New England, according to a state epidemiologist.

Reasons for the increase may include more infections, awareness from doctors testing for the disease or a change in case definition made by the Center for Disease Control to include more diagnoses. 

However, only 59 percent of the 878 people in Maine diagnosed last year with Lyme disease exhibited the telltale rash that often appears after a deer tick bite, according to Dr. Andrew Pelletier, epidemiologist at the Maine Center for Disease Control. 

Caught early, most cases of Lyme disease can be can be effectively treated with antibiotics for 10 days to one month. Undiagnosed, the disease may cause problems that last for years.

 Jessica Platanitis’ Lyme disease diagnosis was caught late.

Platanitis said she felt sick on and off through high school, but she wasn’t diagnosed until she became more sick at age 23. At her worst, the 28-year-old Old Orchard Beach resident experienced extreme fatigue, muscle pain, nerve pain, dizziness, difficulty concentrating, short-term memory loss, and weight loss due to nausea, stiff joints affecting her ability to even walk and seizure-like episodes.

Platanitis said she sought further expertise from Dr. Sam Donta of Boston after she was diagnosed by her primary care physician. 

“There are very [few] people in Maine that know anything to help,” Platanitis said.  She said some doctors she visited in Maine told her “it was all in her head.”

“It made me very frustrated to have everybody telling you it’s in your head. Then you second guess yourself,” Platanitis said. 

Donta was the closest doctor she found who offered intensive treatments for Lyme disease. 

Under his care she received extensive antibiotic treatment, including doses of doxycycline and a 30-day course of intravenous antibiotics the summer she was diagnosed. Platanitis said she has been off all antibiotics for nearly a year, but still has days she is sick or days she cannot get out of bed.

“I walk around, I look normal, and people think I’m fine,” Platanitis said. “But most days I’m in some kind of pain. I’ve just gotten used to living with it. You can carry on your life if you fight through it.”

Pelletier said late-onset symptoms of the disease include joint and muscle pain similar to arthritis, neurological problems or heart problems. Of those diagnosed in 2008, 31 percent experienced arthritic-like symptoms, 14 percent had neurological symptoms and 1 percent had heart complications, Pelletier said.

As her struggle with the disease continues, Platanitis said she has found herself explaining to a lot of people what Lyme disease is and what her symptoms are like. She said she has also realized there is not a support network for Lyme disease patients in Maine.

 “With such an increase in Lyme disease, I wanted to get the word out there and let people know,” Platanitis said. 

She organized the Lyme Disease Awareness Walk in Wells, which marks its third year this September. Since starting the walk, she has met a number of people interested in heightening awareness, including Lynn Quattrochio, who Platanitis said has had Lyme disease for 15 years. 

Platanitis said she has also networked with people who are working on different resources. Constance Dickey, of Hampden, has organized a “MaineLymeDisease” group email list that can be accessed by signing up for the group page through www.yahoo.com. Sharon Hawks, an administrative assistant for the Auburn Public Library, sits on the board of trustees for the Lyme Disease Digital Library, a resource with information on Lyme and other tick-borne diseases that can be accessed by visiting www.lymediseasedigitallibrary.com. Platanitis said another Maine woman, Amie Ayer Levasseur, is developing a support network called “Lyme Buddies,” which is still in the works. 

Platanitis said money raised from the walk in previous years was donated to the Lyme Disease Association. However this year, in an effort to keep the money in Maine, funds will benefit the Lyme Disease Digital Library and the startup of Lyme Buddies. 

“I still feel there needs to be a lot more awareness in Maine,” Platanitis said. She sees the need for more reliable tests and funding to research a cure for patients experiencing long-term symptoms. 

Staff writer Emma Bouthillette can be reached at 282-4337 ext. 237.