In the summer of 2014, a farmer from Bourbon County in southeast Kansas was transferred to the University of Kansas Hospital with an unknown disease that was causing his organs to fail.
Dana Hawkinson, an infectious disease specialist at the hospital, suspected a tick-borne illness. For 10 days, he tried everything to treat the man, but his condition kept deteriorating. His lungs failed. His blood pressure collapsed. Hawkinson felt helpless as the man’s family watched him die.
“What was horrible is we couldn’t give them an answer,” Hawkinson said. “We didn’t have an answer for the longest time as to why is he not getting better? What is causing this? Nothing that we’re doing is seeming to help even though we’re going to the nth degree to try and give him supportive care and give him active care to try and get him better.”
Hawkinson had sent a sample of the man’s blood to the Centers for Disease Control and Prevention because he thought the man might have Heartland virus, a relatively new tick-borne illness that had first had been identified in St. Joseph and had sickened about a half-dozen people in Missouri and Tennessee.
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But after the man died, the CDC determined there was a new pathogen in his blood, something similar but not identical to illnesses found overseas that are spread by mosquitoes and ticks. They named it Bourbon virus.
Three years later, as another tick season approaches, little more is known about the mysterious disease. Another case was reported in Oklahoma a year after Hawkinson’s patient died, but no others have been confirmed, though both Hawkinson and Lee Norman, the chief medical officer at KU Hospital, said they think other cases may have gone undiagnosed.
“I can’t give you a specific number,” Hawkinson said. “But certainly cases where people were ill and we think it looks like one sort of disease, but it isn’t, and they end up recovering or they die and that’s what it truly is.”
Hawkinson said that could include people in the Kansas City area, given the number of ticks here.
“We’re able to see patients who come in with a constellation of symptoms like we would expect to see in certain of these bacterial or viral infections, but we never get a true diagnosis,” Hawkinson said. “So I think it’s certainly reasonable that these cases are around. Either that, or maybe the patient isn’t even that ill, so they have a very mild form of the disease and they get better on their own and go about their daily lives.”
Hawkinson said he suspects there’s a broad spectrum of disease caused by Bourbon virus, and that it’s usually more mild than the form that killed his patient in 2014. Mild cases would be especially hard to identify because the symptoms are nonspecific: headache, fever, malaise, chills and sometimes nausea, vomiting and muscle aches. The Oklahoma patient recovered fully.
Testing for the virus is done exclusively by the CDC in conjunction with the Kansas Department of Health and Environment. Department spokesman Matt Keith said the federal agency has shifted focus and resources to the Zika virus.
“There have been no specimens tested for Bourbon virus since 2015,” Keith said by email.
Norman said the CDC’s strict criteria for testing also play a role. The federal agency requires patients to hit a hard number on several different measures such as high fever, low white blood cell count, low platelet count and elevated liver enzymes before it will test for Bourbon virus.
Hawkinson said he and Norman agree that it would be helpful if the CDC offered a little more flexibility on some of those areas when patients have symptoms consistent with the virus.
But he also said he understands why CDC officials are so selective right now. They’re not certain how accurate the test is, and no health care provider wants false positives that lead them to mistakenly tell patients they have an untreatable disease that’s potentially fatal.
For now, Hawkinson said the best course of action for the public is routine tick-prevention measures: avoiding wooded areas when possible, and wearing DEET-based insect repellant and long sleeves and pants treated with permethrin when you have to go in the woods — then a shower and a thorough check for ticks.
In the future, Hawkinson hopes to have a definite test and clear course of treatment.
“We are certainly trying to formulate the right questions and trying to get the right answers to be able to diagnose this when we need to, and when people do come down with the illness, obviously get them better,” Hawkinson said.