On Lyme disease, recognition urged; it goes undiagnosed, Arkansas governor told

Arkansans who advocated for state recognition of Lyme disease watched Gov. Asa Hutchinson sign an official proclamation Monday, and urged him to do more.

There have been only two confirmed cases of the tick-borne disease in the Natural State in the past decade, though Hutchinson was told that is due to poor awareness in the medical community, not actual prevalence.

About 30 people wearing lime-green ribbons stood behind the governor and cheered as he was photographed holding up the proclamation declaring May as "Lyme and Tick-Borne Diseases Awareness Month."

But members of the group also said the official letter should be followed up with more specific actions. One woman was seated in a wheelchair, and several others began sharing their stories with the governor before he left the room.

"As you can tell, it's more than two here," said Amy Rose, who co-leads the Arkansas Lyme Foundation with Alarie Bowerman*.

Rose said the group represented the best of the cases in Arkansas -- the worst are bedridden with fatigue and other symptoms.

The classic symptom of the disease, a red bull's-eye rash, does not appear in all patients, according to the Centers for Disease Control and Prevention. Other symptoms are wide-ranging and include flulike illness and in some cases chronic conditions such as memory loss and arthritis.

Hutchinson's proclamation states the disease, which can be fatal in some instances, is "seriously underreported across the nation, especially in Arkansas."

Between 2012 and 2015, the CDC recorded no cases of the disease in Arkansas.

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About 30,000 cases are reported nationwide to the CDC each year, with the vast majority concentrated in the Midwest and Northeast, where the disease was first discovered in a Connecticut town.

The CDC estimates the total number of actual cases is much higher, more than 300,000 per year, according to its website.

But the agency asserts that the geographic distribution for unreported cases is roughly the same as for reported ones, and advises that Southern ticks are less likely to transmit Lyme disease.

The governor's proclamation also noted that there are no specialists for Lyme disease in Arkansas, which the group said was driving patients out of state to receive treatment.

Diagnosis lags because Arkansas doctors are wary of scrutiny by the Arkansas State Medical Board, Rose said, and more training is needed for the disease to be recognized.

Kevin O'Dwyer, an attorney representing the medical board, said Monday he had never heard of the issue being brought up, and was unaware of any board policy regarding Lyme disease.

One of the advocates who spoke with the governor, John Hill of El Dorado, said he had to sell the financial advising firm he founded and travel to Denton, Texas, to receive treatment.

"I thought I had the tiger by the tail," Hill said of his professional success before his symptoms began. "It took away my livelihood."

Hill said more money needs to be spent to train doctors in the state to recognize symptoms of the disease.

Hutchinson told the group he would continue to look into the issue but did not offer specifics.

State Sen. David Sanders, R- Little Rock, who attended the meeting and mentioned his own experience of having Lyme disease, said he was looking to hold hearings on the disease.

Legislative committees often meet to discuss and approve studies on topics throughout the year, but the next regular session to pass laws is not scheduled until 2019.

The Legislature does have the ability to spend money in the interim.

Metro on 05/23/2017

*CLARIFICATION: Alarie Bowerman is a co-founder with Amy Rose of the Arkansas Lyme Foundation. A previous version of this story was unclear on who led the foundation.

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