What St. Louisans need to know about Lyme disease

On a May morning in 2014, Donna Vreeland was spreading mulch at her St. Louis community garden in South City. The next morning, she woke up with a bite on her chest and severe flu-like symptoms. Despite visits to the urgent care, a primary doctor and a dermatologist, her symptoms intensified. No one could make a diagnosis.

“I had never felt so sick,” she says.

Shortly after the bite, Donna ended up in the emergency room for nearly a week. “They ran every test, even a lumbar puncture, and all came back negative,” she said. “They insisted no Lyme in Missouri. I had entered the medical Twilight Zone.”

Lyme disease is a term often used to describe the various symptoms protracted by the tick borne bacteria Borrelia burgdorferi. Despite her declining health, Donna was fortunate to develop a bull’s eye rash that’s hallmark to illnesses caused by B. burgdorferi. However, the International Lyme and Associated Disease Society (ILADS) reports that less than 50 percent of Lyme disease patients present with the bull’s eye rash. Getting an accurate diagnosis can take up to two years on average.

The Great Imitator

Charles Crist, MD, PC, a borreliosis expert near of Columbia, MO, says that Lyme-like illness is “very relevant” in the St. Louis region, citing entomologist Dr. Dorothy Feir’s research at St. Louis University, which found ticks collected in Missouri tested positive for Borreliosis.

“The top problems [with borreliosis] are pain, fatigue, brain, eye, and neurological problems, but it can imitate any disease,” says Crist. With good reason, Lyme-related illnesses are often known as “The Great Imitator,” mimicking diseases a varied as brain cancer, seizure disorders, dementia, and dozens more (as listed by the University of Maryland Medical Center).

With confirmed cases of tick-borne illness in the St. Louis region, the growing controversy around how to identify and treat bacterial infections like borreliosis is at heart of a growing public health concern. Less prevalent in Missouri—but another increaseing problem—is the potentially deadly Powassan virus, which is carried by three types ticks, including the deer tick that transmits Lyme.

The Center for Disease control calculates that 300,000 Americans are diagnosed each year with borreliosis. As the rate of infection increases, so does the controversy surrounding how to treat it. Some say Lyme is an acute infection that can be cured with a few weeks of antibiotics, and others insist it’s a persistent infection that causes complex autoimmune-like illness.

Typically, a Lyme diagnosis is made when a patient reports chronic fatigue, pain, neurological abnormalities, and when blood tests detect Lyme antibodies. However, ILADS reports that the conventional test given at a doctor’s office can miss up to 35 percent of culture proven Lyme diseases, and in some cases 50 percent of patients receive false negative results.

Preventing Tick-Borne Infection

Borrelia burgdorferi is transmitted by the bite of blacklegged ticks, which thrive in wooded areas with tall grass. Always wear long pants and long sleeves near grass or any vegetation. Check for ticks every day. Vigilance is everything—a tick is often no bigger than head of a pin and can easily be missed. Check out these prevention tips for more information.

Crist’s primary prevention recommendation to use Permethrin, an insecticide that can be used sprayed on clothing and will last up to six washings. He notes that DEET is not adequate to prevent tick bites. 

Out of the Woods

Like many patients with chronic borreliosis, Donna has faced a long and complicated recovery journey, but she’s more hopeful about the future these days.

“I have good days and bad days but the good are getting better,” she says. “I believe now after almost two years that healing is in progress. I won’t go in the grass or work in the garden without proper Permethrin protected clothing. This has been a nightmare. You don’t understand it until you get it. Treatment is trial and error at my expense. I pray for a healthier tomorrow.”