Frank and Ronda Arndorfer of Pewaukee were boating on the Atlantic coast last summer when their chronically ill son Chris, 24, took a turn for the worse. They decided to head back home, and Ronda called their friend out east to cancel plans.
“Lyme disease,” said the friend when told of Chris’ symptoms. That’s crazy, thought Ronda; Chris had recently tested negative for Lyme. Still shipboard, she got out her laptop and started Googling.
She discovered that Lyme disease – a bacterial infection transmitted by deer ticks – is not easy to peg. Early symptoms may include fever, fatigue, muscle pain or a circular skin rash, but not everyone gets them. As it progresses, Lyme can affect any organ in the body, resulting in countless symptoms: dizziness, heart palpitations, joint pain or swelling, numbness, nausea, face and eyelid twitching, forgetfulness, seizures, panic attacks and depression. It is often mistaken for Parkinson’s, Alzheimer’s, rheumatoid arthritis and Lou Gehrig’s disease.
According to the Centers for Disease Control, Lyme is America’s fastest-growing infectious disease, with more than 35,000 confirmed or probable new cases in 2008, up 28 percent from 2007 and double the total (17,730) from as recently as 2000. Wisconsin is one of 10 states where it is considered endemic, with infected ticks throughout the state, including Milwaukee. As a result, Wisconsin has the sixth-highest incidence of Lyme in the nation, with 2,034 cases in 2008, up from 631 in 2000.
As Ronda learned, Lyme tests produce many false negatives. The characteristic bulls-eye rash doctors use to identify Lyme in its early, most treatable stage, does not appear on everyone who’s infected.
Chris had been sick for five years with gastro-intestinal problems that six different doctors couldn’t pinpoint. “They tested him over and over,” says Ronda. More symptoms developed – bad headaches, fatigue, memory problems. “The sixth doctor recommended a psychiatrist.”
Ronda read about doctors who follow Lyme protocols different from those recommended by the Infectious Diseases Society of America, which most doctors follow. She found one such “Lyme-literate doctor” in New York City.
Two days later, the Arndorfers docked near LaGuardia Airport and hired a car to drive to Manhattan. “We didn’t have an appointment,” says Ronda. “Chris and I waited outside Dr. [Bernard] Raxlen’s office that morning and followed the receptionist in. I was desperate.”
Chris was diagnosed with Lyme on that first visit and test results soon came back positive. He now sees Dr. Raxlen monthly, and though not cured, he’s improving.
Lyme-literate doctors are rare in Wisconsin. Dr. Steven Meress, at the Fox Valley Wellness Center in Fond du Lac, is one. He sees patients from around the state and has a waiting list many months long.
Not one Lyme-literate doctor can be found in metro Milwaukee, but Ronda wants to change that. She’s started the Midwest Lyme Foundation, an all-volunteer group dedicated to increasing community and medical awareness. “We have already begun to accomplish our mission,” she says. “This summer, we are sending two doctors from the Waukesha area to get [Lyme-literacy] training.”
Chris knows firsthand just how important it is to find such a physician. “You go to doctors year after year and they say you’re
a hypochondriac. By the time you get diagnosed, it’s kind of late,” he says. “Many people with Lyme spend thousands of dollars in hospital and doctor bills, but they’re not curing the Lyme.”
