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.

(Credit Monica White)

(Credit Monica White)

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.

(Credit Monica White)

(Credit Monica White)

“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.

(Credit CBS)

(Credit CBS)

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.

(Credit CBS)

(Credit CBS)

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.

(Credit Christie Renner)

(Credit Christie Renner)

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.

Comments (3)
  1. Sarah says:

    I got lyme near Steamboat Springs. My husband and I had all they symptoms except a rash. We had a high fever for two weeks, body aches, chills, sweats, all in the month of July. When we asked to be tested for Lyme they said it was impossible to get it here. Now 8 years later I have felt terrible and getting progressively worse. I finally got tested for lyme and tested positive. My doctor still argued saying it must have been a false positive and that lyme isn’t in Colorado. My conclusion is that it’s easy to say it’s not here if you ignore science, and the only “science” you listen to is the CDC.

  2. My grandson, Elijah Grant, is 20 years old, a Denver resident who does not go hiking and out into the back country at all — yet he was just diagnosed as of today, July 8, here in Denver WITH LYME DISEASE. Testing and re-testing confirmed. He has no idea where he may have picked it up, unless it might conceivably be from one of his dogs (though they haven’t found any ticks on them, either.)

    So be aware, folks … it’s definitely migrated here to Colorado and has spread into our borders, for sure.

  3. don mau says:

    Doctors don’t read the latest science you may as well go to a hardware store you’ll get better care. I had Lyme and went to Dr. Noon at Western Infectious Disease clinic in Arvada Colorado , she was useless and knew less than a block of wood.

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