LITTLE ROCK, Ark. (KTHV) -- Lori Lynn Sikes co-founded the Arkansas Lyme Foundation after her personal struggle getting diagnosed with Lyme disease and meeting people with similar struggles.

“People are dying and I’m not exaggerating, people are calling us every week in desperate situations,” said Sikes.

She said she has spoken with numerous people who have been turned away for Lyme disease testing in Arkansas. She said some of the people that did have positives tests, were being told they were false positives. She believes some Arkansas doctors are misinformed by thinking that Lyme cannot happen here in Arkansas and because they think that, they won't test for it or they diagnose it as something else.

“I have over 150 friends that have a positive diagnosis for Lyme in Arkansas that I’ve met just since this fall,” she said.

Her goal is to work with doctors and the Arkansas Department of Health to better educate Arkansans on Lyme disease. The Arkansas Department of Health said they understand concerns, but researchers have classified Arkansas as a low-incident area for Lyme disease. Dr. Dirk Haselow, the Arkansas State Epidemiologist, said the problem is that testing for Lyme disease has never been as definitive as it is other diseases.

“It’s very controversial and there is a lot of research being aimed at testing Lyme disease,” said Haselow.

He said there's a difference on what doctors might diagnose as Lyme disease and what the Department of Health can classify as a reported case of Lyme disease. He said their hands are tied on what to count because they use a national case definition that groups of medical experts came up with. He said classification and diagnostic methods have caused controversy between doctors.

“A different group of people have evolved over time and they call themselves Lyme literate physicians,” he said. “They use a different algorithm and these two groups don’t agree on how Lyme should be diagnosed.”

He said the Arkansas Department of Health is doing what they can to examine each possible case effectively. He also said that representatives from the Centers for Disease Control have been on site helping them with Lyme surveillance efforts, among other things, for the last few days.