For more than 15 years, residents of Eureka Springs and other cities in the state have contacted Lyme disease from a tick bite. But they have been frustrated that the Arkansas Department of Health (ADH) and the Centers for Disease Control and Prevention (CDC) denied that Lyme disease existed in the state. Some said the government’s failure to recognize Lyme disease in the state meant they had difficulty getting proper treatment, sometimes with serious, permanent consequences to their health.
Recently a Springdale mother, Alarie Bowerman, prevailed in a long battle to get the ADH and CDC to finally admit there is Lyme disease in the state when it confirmed the fact that two of her daughters met the CDC criteria for Lyme. Arkansas was the last state in the continental U.S. to confirm Lyme disease in its population. Bowerman and her allies, including members of the Arkansas Lyme Foundation, recently had a photo shoot with Gov. Asa Hutchinson declaring Lyme Disease and Tickborne Diseases Awareness month.
The Bowermans’ three daughters contracted not just Lyme, but other tick-borne diseases, after a Girl Scout camp out at their troop leader’s house in Lowell in May 2016. Although they had been sprayed with a tick repellant, they came home with a total of 23 tick bites among them.
“The two younger girls had reactions the morning after returning home,” Bowerman said. “By Sunday afternoon they had fatigue, extreme lethargy, rashes around bite sites, and flu-like symptoms. We took them to a walk-in clinic that was the only thing open on Sunday. The healthcare provider on staff considered all their different symptoms, noticed a bullseye target mark around one of the rashes and prescribed the treatment for early stage Lyme disease, three weeks of amoxicillin. We are grateful they caught it early.”
Later she took the youngest girl to their pediatrician because she was still having reactions to the tick bites. The pediatrician agreed to test all three girls for Lyme disease, saying that although there wasn’t Lyme disease in the state, she would test the girls for Lyme disease so Bowerman would rest easier. Five days later they got the call that the youngest had tested positive for Lyme, tularemia and Rocky Mountain spotted fever, and five days after that the oldest had tested positive for Lyme. Bowerman said their middle daughter also had Lyme, but didn’t meet the CDC testing criteria at the time of testing.
Bowerman said she believes the pediatrician who did the Lyme testing got pressured by the ADH, as the pediatrician later refused to see any of Bowerman’s six children after Bowerman herself spoke to the ADH and divulged the pediatrician’s contact information to them for “CDC reporting purposes.” The Bowermans also have three younger boys, whom the clinic had no issue seeing before that time. After being denied treatment in Arkansas, they traveled out of state to get the treatment their girls needed.
Even with two diagnoses, it took another year of advocacy work by Bowerman before the state accepted the diagnosis and changed its official position on Lyme being present in the state.
Karen Welch, an Arkansas RN who lives in Grassy Knob, contracted Lyme disease from a tick bite in her yard here 15 years ago. She says a big part of the problem is the testing procedure.
“The CDC estimates that most cases that meet reporting criteria are not getting reported,” Welch said. “And the CDC has difficult reporting criteria. The Western Blot test makes it difficult to confirm someone to has Lyme disease. There are a lot of false negatives. If a person who has had a tick bite gets tested when early symptoms appear, the test is usually negative because antibodies haven’t had time to develop.
“A test can be negative for several reasons, even though they have Lyme disease. Reasons for a negative can be spirochete is deep in the tissue; recent anti-inflammatory treatment; a lab with poor technical capability for Lyme disease; and surface antigens that change with temperature.”
Welch said most Arkansas doctors do not understand about Lyme and do not know the proper way of treating it. If you come in with something like a rash after a tick bite, they give you seven to ten days of antibiotics.
“In my case, I was given the wrong antibiotic by a local doctor, but later saw a Lyme specialist in Kansas City, where I was given the right types of treatments,” Welch said. “I was on different antibiotics for more than five years.”
The delay in proper treatment cost her dearly.
“My internal organs were highly infected,” Welch said. “That’s one reason I am a diabetic now.”
Welch said part of the problem is that not all people have the same symptoms. She had fatigue, but no bullseye rash. Another difficulty, a reason why testing is often problematic, is that the Lyme bacteria change their shape.
“The Lyme spirochete has a biofilm coating on them that is very hard to get rid of,” Welch said. “It sort of protects Lyme’s. Because of Lyme’s ability to change shape, people are often misdiagnosed. They call it a mystery disease because a lot of people are diagnosed with things like MS, fibromyalgia, and lupus. It is hard for a doctor to diagnose you because they are fearful because they have seen a lot of doctors in the Northeast who have been disciplined for treating Lyme the proper way.”
Katie White, a spokesperson for ADH, said case definitions for Lyme change over time, and that the ADH follows definition approved by CDC.
“The CDC visit-and-record review has been completed and it validates our process for reporting cases, and the conclusion is that Arkansas is still a low-incidence state for Lyme,” White said. “Based on their feedback, we are instituting some additional changes to the way labs report test results to us to improve the timeliness and completeness of surveillance data.”
ADH still claims Arkansas is considered a low-incidence state meaning there are less than 10 confirmed cases per 100,000 people for the previous three reporting years. But, as Welch points out, the testing has been problematic in that so many people who have come down with Lyme are misdiagnosed. There have been more than a dozen people in Eureka Springs alone, a city of only 2,000, who believe they contracted Lyme disease here.
Welch said a little-known fact is that it has been confirmed that not only ticks can carry Lyme disease. “It has been researched and verified that this spirochete can be carried by mosquitoes, fleas, deer flies, mice, horseflies and other biting insects,” she said.
My brother was diagnosed in Arkansas with full blown Lyme’s Disease 56 years ago. He passed away from complications due to the Lyme’s Disease in May 2017. Thirty-six years, he suffered, which started at the prime of his life. ADH knew it was here a long time before the dates in this article.