Lyme Patient Champions Tick Tracking, Education

By Libby Smith

LITTLETON, Colo. (CBS4) - Lyme disease is caused by bacteria which is transmitted by a tick. The black-legged tick or deer tick is the tick most associated with Lyme disease. Entomologists say the black-legged tick is found on the East Coast and Upper Midwest, with the western black-legged tick found on the West Coast. Therefore, most of the cases of Lyme disease are tracked in those areas of the country.

"The word on the street is, 'We don't have Lyme in Colorado, so you don't need to worry.' We wanted to change that," said Monica White, a Lyme disease patient.

White, her husband, and two children have been battling Lyme disease for years. Now they're on a mission.

"We as a family have been trying to educate as much as possible to help other people avoid our scenario," White told CBS4.

White is starting an organization called Biting Back to educate and raise awareness about tick-borne illness in Colorado.

LINK: Biting Back

"It's just going to self-perpetuate that process of, 'Well we don't have it, so we don't need to research.' And yet more and more people are getting sick, whether it's originating in Colorado or not. The care in Colorado is not going to get better for patients," White said.

She's now embarked on a research project with the Bird Conservancy of the Rockies.

"Catching a bird is a wonderful opportunity to do a whole variety of research projects," said Meredith McBurney, a bird bander with the Bird Conservancy of the Rockies.

LINK: Bird Conservancy of the Rockies

While McBurney has bird in hand, she bands it, measures the wings, weighs it, checks for fat and now she looks for ticks. She's agreed to capture the ticks for testing.

"Disease carrying ticks are a big problem," McBurney said.

The problem is that as birds and other wildlife migrate across the country, they could be bringing new ticks or new bacteria into the state.

"There's holes of information nationwide, and Colorado is a big black hole," White said.

RELATED: Patients: 'Lyme Disease Is In Colorado'

White has just begun gathering data, but she's also disseminating information too. In May, she put together her first-ever forum on the disease, bringing together experts in an effort to start the conversation.

"We can't think about it like we used to think about it," said Pat Smith, Executive Director of the Lyme Disease Association.

The Lyme Disease Association is a national nonprofit that funds research, education, and patient support. The organization helped pay for the forum and has provided money for White's tick collection efforts.

LINK: Lyme Disease Association

"I think it's premature to say, 'There is no Lyme disease.' We know that there are people here who have it. We know that there are dogs here that have it. We know there are animals that have the bacteria," Smith told CBS4.

Smith said that traditional thinking about Lyme disease can be dangerous.

"Maybe you're not going to get readily diagnosed because your doctor may not even look at that," Smith said.

That's what motivates White. She says it took 7 years for her to get a diagnosis of Lyme disease, and she doesn't want to see other people go through what she did.

"It's really frustrating to know that our life could have taken such a different path," White said.

Libby Smith is a Special Projects Producer at CBS4. If you have a story you'd like to tell CBS4 about, call 303-863-TIPS (8477) or visit the News Tips section.