Utah women among those fighting a disease that some doctors doubt exists

How do you know if you have Lyme disease? The answer may depend on where you live and the outlook of the doctor you see.

Lyme disease is among the country’s fastest-growing infectious diseases that are vector-borne, or carried by organisms, typically insects. Cases are concentrated in the Northeast and north-central states, in environments where ticks that transmit Lyme disease thrive.

In Utah, where researchers have not found evidence that ticks carry the disease, there are about 10 laboratory-confirmed diagnoses each year, according to Bree Barbeau, an epidemiologist with the Utah Department of Health.

But some patients and doctors, including West Jordan osteopath Andrew Petersen, believe many Utah cases go undetected — echoing a national and often vitriolic debate over how to diagnose and treat the disease.

Petersen, who works with Whole Health Medical Group, estimates there are more than 200 new cases in the state each year, criticizing tests he argues aren’t sensitive enough to detect it.

“In many things in medicine, we believe the test more than we believe the patient, and that’s a problem,” he said. “Tests are fallible, just like everything else.”

Emme Packer-Koons, who said she first showed symptoms of Lyme disease at age 9 but was repeatedly misdiagnosed, calls for more awareness among Utah doctors.

“If I lived in the East — like if I lived in Virginia or New Jersey or New York — and I went with these symptoms they’d say, ‘Oh, you have Lyme disease,’” she said.

Yet Barbeau said she is confident Utah doctors have the tools they need.

“The clinical symptoms are fairly specific to Lyme disease, and the tests that we can run are fairly sensitive,” she said. “I think general awareness of Lyme disease — even in a place like Utah — is probably fairly high because people are aware of the disease itself.”

‘Every single symptom’

In its early stages, Lyme disease is treatable with antibiotics. Its main symptom is a bulls-eye rash, which affects approximately 60 to 80 percent of all infected people, according to the state health department. Other early symptoms include fever, chills, headache, fatigue, muscle and joint aches and swollen lymph nodes — all of which could support a number of other diagnoses.

The condition is usually verified through blood work to detect Lyme antibodies and a second test to verify the results.

The Centers for Disease Control and Prevention (CDC) says the disease can be diagnosed based on a patient’s symptoms and exposure to Lyme-carrying ticks. But because there isn’t evidence that Lyme-carrying ticks are in the state, Utah health officials generally require a case to be verified with lab tests before they will report a case to the CDC.

Jenny Jones, who helped found the Utah Lyme Disease Alliance based on her own experiences with the condition, said tests alone are inadequate.

“There are so many people that I know that have had every single symptom,” she said. “I would still be paralyzed if they went off of lab testing,” she added, noting the effectiveness of Lyme treatments she has pursued.

Her organization supports about 800 Utahns with Lyme disease, many without a laboratory-confirmed diagnosis, and works to raise awareness among doctors.

If untreated, Lyme disease can spread to joints, the heart and the nervous system and can cause lifelong problems, according to the state health department.

But not all traditional medical practitioners agree on the existence of post-treatment Lyme disease syndrome, sometimes called chronic Lyme disease. They argue the condition has not been substantiated by research and caution patients against paying for unproven treatments.

For example, physician and advocacy groups disagree over the effectiveness of long courses of antibiotics, sometimes prescribed for several months or years for chronic Lyme symptoms. A report published by the CDC in June said there is no evidence to support such treatment for patients considered to have the condition, and described cases where it led to serious bacterial infections.

‘There’s no hope’

 Packer-Koons and Charity Wayman are two of many Utahns who say they were not diagnosed until their condition became chronic, but have now been told by health care providers that they have Lyme disease, based on their symptoms.

Both women were referred to doctor after doctor, were misdiagnosed multiple times and were told they might be mentally ill, they said. Neither was ever referred to an infectious disease specialist.

Packer-Koons, 32, of Woods Cross, said she didn’t have the telltale Lyme rash as a child, but experienced almost all the other symptoms.

“I just don’t know how I fell through the cracks,” she said. “I did everything within my power — me and my mom and my dad — to figure out what was going on, and just somehow it was missed.”

Victoria Sucher, a naturopathic practitioner in Provo who specializes in the disease, diagnosed Packer-Koons five years ago. Now, the former musician said she takes dozens of natural health supplements a day to mitigate her symptoms and estimates she has spent around $200,000 on her condition — first chasing a diagnosis and now looking for relief.

“From 5 a.m. to 1 in the morning, my life is devoted to medication and to physical therapy and to techniques that are helping me to get better or at least manage my symptoms,” she said, noting that she suffers from insomnia because of her pain. “My life is devoted to this.”

Packer-Koons said she has accepted her situation and mourned the possibility that her life and her music career could have been different had she been diagnosed sooner.

“I’m not bitter anymore, although I don’t trust doctors,” she said.

‘It’s confusing and it’s scary’

Wayman, 20, of West Jordan, began experiencing joint pain, fevers and swollen lymph nodes on her neck as a young teenager and had to stop attending classes during her senior year as her health worsened.

“I’d almost get angry with myself for being in pain, or not feeling well or not being able to go to school because I just thought that I was weak; that it wasn’t real,” she said, noting that her visits to about 10 doctors had yielded no answers. “It’s confusing and it’s scary and there’s no hope, really.”

But Richard Allen, a chiropractor in Draper, diagnosed Wayman based on her symptoms a week after she left school, she said — and she still managed to graduate in the top 10 in her class.

Wayman’s health improved after several alternative treatments for Lyme disease, and she took time off from her studies at Utah State University to serve a mission in Pennsylvania with The Church of Jesus Christ of Latter-day Saints. Her mission was cut short, however, after several trips to an emergency room for symptoms she considers related to chronic Lyme disease, such as her heart condition. She said her doctors were more knowledgeable about Lyme than many of the specialized physicians she’d visited in Utah.

“That’s when I started to think that maybe if I was in Pennsylvania when I got sick or had been seeing doctors there that I would have found a diagnosis sooner and it wouldn’t have become chronic,” she said.