By Libby Smith
PONCHA SPRINGS, Colo. (CBS4) - Lyme disease is a bacterial infection transmitted by the bite of a tick. The tick that is known to carry Lyme disease is not usually associated with Colorado, and conventional wisdom has been that Lyme disease isn't in the state. But patients who have the disease say that that is a misnomer and it's hurting patient care.
Monica White of Poncha Springs is among the patients who say they've been suffering with Lyme disease for years.
"I was dying. I was dying and I had zero quality of life," White told CBS4.
She was bed-ridden with extreme fatigue, abdominal pain, shooting nerve pain, and neurological problems. She was treated for everything from depression to pelvic inflammatory disease -- nothing worked.
"I just didn't understand what was going on. And yet I wanted so much to be a part of my children's lives … my husband's life," White recalled.
White wasn't the only one who was sick. Her husband and two children also tested positive for Lyme.
"It's effected our relationships. It's effected my children's school, their activities, our financial status," White explained.
But the hardest part of Lyme disease, Monica said, is that none of her dozens of doctors in Colorado even considered it.
"They thought it was highly unlikely I had Lyme because Lyme doesn't exist in Colorado," White said.
Lyme disease is known to be carried by the black-legged tick or deer tick. The Centers for Disease Control and Prevention tracks cases around the country. Its map shows infections originating along the East Coast and Upper Midwest. Colorado shows virtually no incidents of Lyme. And the Colorado Department of Public Health and Environment reports zero confirmed cases of Lyme disease in Colorado.
LINK: CDC Lyme Disease
"I would say most of the Lyme disease cases do occur on the East Coast, particularly in New England, just because that's where the bacteria is within the ticks at the greatest concentration," said Dr. Heather Young, the epidemiologist at Denver Health Medical Center and an infectious disease doctor. She said that she's treated Lyme patients who were exposed out-of-state, but doesn't have any patients with the kind of long-term symptoms that White has had.
"Really the diagnosis of a Post Lyme Syndrome is actually quite challenging," Young told CBS4.
Patients at the Lyme Disease Support Group have faced that challenge.
"People just don't really understand what Lyme disease is. We're told that can't be it, that can't possibly be it. No one can help us," said Billie Shellist, a Lyme patient and leader of the support group.
Shellist tested positive with Lyme 3 years ago.
"I spent 5 to 6 years before that really sick …going to multiple-type practitioners and no one being able to tell me what's going on with me," Shellist told CBS4.
Her nervous system has been severely affected and she's developed liver disease. Shellist wears oxygen wherever she goes.
"Generally, I have a hard time just regulating my breathing cycle," Shellist said.
"I was finally diagnosed with Lyme disease in 2014, so it took about 23 years to get a correct diagnosis," said Christie Renner, another member of the Lyme Disease Support Group.
She says the disease has settled in her hips causing debilitating pain.
"A lot of my journey was going from orthopedic surgeon to orthopedic surgeon trying to find out why this girl has so much pain," Renner said.
She even had three surgeries in and around her hips that ultimately did nothing to improve her pain.
ADDITIONAL RESOURCES: Lyme Disease Association
While the diagnosis may be difficult, Young feels like the medical community in Colorado is pretty well informed.
"I don't feel like there is a stigma around Lyme disease. People who've gone to medical school have had to pass the tests and really understand what the symptoms of Lyme are. Certainly a lot of our doctors here have trained in Lyme endemic areas or have seen travelers who have come back with Lyme disease, so I feel like as a community we're pretty well informed," Young said.
Patients say there needs to be an awakening in Colorado when it comes to Lyme disease.
"People travel. Pets travel. Wildlife migrates," White said.
"There's just an incredible void. Many doctors are not up to date on the research," Renner said.
"I think people just need to be more aware. People need to understand, it's absolutely here," Shellist 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.
for more features.