Guestatorial: ADH failed Lyme patients

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The Arkansas Department of Health had to be dragged kicking and screaming to reluctantly acknowledge there is Lyme disease in the state. ADH was the last state in the country other than Hawaii to admit having Lyme disease. ADH only took action after Springdale mother Alarie Bowerman pressed the issue after having two daughters with positive blood tests for Lyme under the stringent criteria established by the Centers for Disease Control and Prevention (CDC). The state still wouldn’t have admitted Lyme except for tireless public advocacy by Bowerman and others painfully aware of the existence of Lyme.  

Even now, ADH is determined to downplay Lyme disease.

“Recognizing these two cases is consistent with Arkansas’s designation as a low-incidence state for Lyme disease,” AHD State Epidemiologist Dirk Haselow said in a press release. “We know that Lyme is rare here, and we encourage doctors and patients to consider other diagnoses first. However, we are committed to finding cases of Lyme when they do occur. If a test for Lyme is done, it is important for the testing to be done correctly to meet the case definition. Doctors and patients can learn about proper testing and reporting for suspected Lyme cases on our website.”

ADH hasn’t been looking for Lyme believing it wasn’t here, and previously that was the advice doctors received. So, some doctors wouldn’t even test for Lyme.

It took Bowerman nearly a year to get ADH to accept that her two daughters had blood work confirming they had Lyme disease. As Bowerman points out, did ADH think there was a force field around Arkansas keeping out Lyme while all the neighboring states had it? Can infected birds and dogs not cross state lines?

So, another year passed when state residents and the doctors who treat them were uninformed. Bowerman, who has co-founded the Arkansas Lyme Foundation (www.arklf.com), said more than 150 people in the state with Lyme or family members of people with Lyme have contacted her. In addition to the 12 Lyme patients profiled in our recent series on Lyme and other tick-borne diseases, another seven local residents have since reported also contracted.

Nancy Jean Baptiste got it in 1999, and her experience shows the flaws of the CDC testing procedures that may miss more cases of Lyme than it finds. Baptiste got the classic bullseye’s rash around a tick bite, and her local healthcare provider said since she had only two bars positive on the Western blot test, she needed no treatment.

“My sister is a physician in another state and she said saying I didn’t need treatment is crazy because Lyme can lay dormant and cause all kinds of problems later,” Baptista said. “She treated me with doxycycline for 30 days. The second time I got it about seven years ago, I had a ‘flu’ shortly after a tick bite. My joints hurt so much I couldn’t touch them. This time I called a health care provider who knew me at the clinic. After describing my symptoms, I received a prescription for thirty days of doxycycline.”

ADH continues to claim that Arkansas is low-incidence state for Lyme cases, one of 15 states where the cases of Lyme were less than one per million between 2005-2015. “In comparison, Arkansas reports a high number of cases of other tickborne diseases, including tularemia, Rocky Mountain spotted fever, and ehrlichia, all of which can be fatal,” ADH said. “These diseases are more prevalent in Arkansas than in most other states.”

ADH said following the clinical diagnosis of Lyme by a health care provider, the patient should consult with a physician or an infectious disease specialist to determine if treatment is needed. That seems to suggest there are cases of Lyme that don’t need treatment.

It is extremely difficult to admit you are wrong, but the health of many people is at stake here. Early treatment for Lyme can prevent a lifetime of disabilities. ADH needs to go back and review earlier cases such as those profiled in our series and hundreds of other cases in the state of people who have contacted the Arkansas Lyme Foundation. It needs to launch an aggressive campaign to educate healthcare providers in the state – who have been told for decades the Lyme doesn’t exist here. The state must do more to improve monitoring and public and physician education about Lyme disease and its common co-infections with other tick-borne illnesses.

Becky Gillette