By Zhen Wang, Wisconsin Watch
Crystal Pauley, a former physician assistant, didn’t believe in so-called chronic Lyme disease — until she became sick.
Many health care providers reject chronic Lyme disease as a diagnosis. One 2010 survey found that just six out of 285 primary care doctors surveyed in Connecticut — an epicenter for the tick-borne infection — believed that symptoms of Lyme disease persist after treatment or in the absence of a positive Lyme test.
When Pauley worked for the La Crosse-based Gundersen Health System, she remembered hearing about a friend from high school battling chronic Lyme in Australia. But she had her doubts. “I’m working in the medical field,” she said. “We’ve never learned about that.”
Years later, Pauley has changed her mind. Pauley tested positive for Lyme in 2020. She suffers from unrelenting fatigue, joint pain and brain fog. She walks up stairs sideways because of the unbearable knee pain. Pauley said she has become “pseudo-Lyme literate” because of her own personal journey.
Pauley belongs to a cohort of patients with Lyme-like symptoms but negative test results or patients with positive test results who suffer from lingering symptoms long after treatment. They call it chronic Lyme disease, while the Centers for Disease Control and Prevention labels it as Post-Treatment Lyme Disease Syndrome (PTLDS). The CDC says there is no known treatment for the condition.
“Their symptoms are always real. They’re experiencing them,” said Dr. Joyce Sanchez, an infectious-disease associate professor at the Medical College of Wisconsin who treats Lyme patients with persistent symptoms.
“If someone is having physical symptoms and isn’t feeling listened to, then they’ll have mental health repercussions and then that will impact their physical well-being,” she said. “And then it’s a spiral that if you don’t address both components of health, you’re not going to make much progress on either side. And they will continue to feel sick.”
Wisconsin Watch talked with five Wisconsin patients, all women, who have been searching for validation and experimenting with personalized treatments as part of a long and sometimes grueling battle with the illness. The infection comes from tiny ticks primarily found in the northeastern United States, including in Wisconsin — which is a hot spot for Lyme, ranking No. 5 among states for Lyme cases in 2019.
One of the five tested positive for Lyme using a two-step testing recommended by the U.S. Centers for Disease Control and Prevention. Three others tested positive using a test not recommended by the CDC. The fifth woman was diagnosed as possibly suffering from the disease by a “Lyme-literate” practitioner.
All of the five patients share commonalities. They’ve never noticed the signature “bull’s eye” rash around the tick bite, the hallmark of Lyme disease, which is seen in 70% to 80% of patients. But relentless waves of rheumatologic, cardiac and neurological symptoms have flattened their lives. Some of them were previously fit and healthy.
Pauley, 37, who as a student cranked through medical textbooks, began having trouble remembering