Worn down by Lyme

Columbia Daily Tribune
Family says disease caused death at 37.

Although Kym Cooper’s autopsy says she died of natural causes, her family believes her death Monday while she was sleeping was a product of Lyme disease, an illness she struggled with for eight years.

"Anybody is going to wear down," said Adam Boster, Cooper’s brother-in-law. "I don’t think we’re meant to go forever in that stage."

Cooper lived with the severe pain and fatigue that accompanied the disease she contracted in 1998. She detailed her physical torment and battle with doctors who didn’t understand her sickness in a 2001 letter her mother found three days after her death at age 37.

"This came from Kym," Susan Cooper said yesterday, showing the letter to a reporter. "There were just so many people who couldn’t understand how a tick made her this sick."

In the United States, ticks are responsible for more human disease than any other insect, the Missouri Department of Health and Senior Services says. Lyme disease is just one of several illnesses that can result from a tick’s bite.

The disease is caused by a bacterial agent, Borrelia burgdorferi. Symptoms include fever, severe headache, muscle or joint aches and a red rash around the site of the initial bite.

Kym Cooper had worked as an activities director for a Fayette nursing home. After she was bitten by a tick in 1998, she just picked it off and kept walking, sister Steffany Boster said. It’s unclear whether the bite occurred on a trail in Boonville or in Columbia.

"I don’t think she ever gave it any thought," Boster said.

A few days later, a red rash developed around the bite.

A Boonville doctor advised Cooper to apply an ointment and forget about it. But she then began to experience extreme fatigue and had trouble walking and speaking.

"I knew something was really wrong," Cooper wrote in the 2001 letter.

Cooper’s Boonville doctor then diagnosed the problem as a stress disorder.

But as Cooper’s health declined, another doctor referred her to Gordon Christensen, a physician and professor at the University of Missouri-Columbia. Nearly a year after the bite occurred, Christensen diagnosed Cooper with Lyme disease - something he’s only diagnosed three times in his career.

"It’s a real challenge," Christensen said. "We don’t know a lot about this."

In Missouri, there were 15 cases of Lyme disease reported in 2004, said Karen Yates, the vector-borne diseases program coordinator at the Department of Health and Senior Services.

"We really have a hard time tracking that," Yates said yesterday. "We suspect that there are other people who do become ill and are not being counted."

Some cases of Lyme disease are incurable, but there is no diagnostic test to determine the presence of the disease.

For Christensen to make a strict diagnosis, he had to follow a strict set of questions and symptoms laid out by the federal Centers for Disease Control and Prevention. Making matters even more complicated, Borrelia burgdorferi has never been isolated in a patient from Missouri.

"By that definition, there’s never been a case of Lyme disease in Missouri," Christensen said.

To test for Borrelia burgdorferi, a blood sample must be taken to see whether blood reacts to the illness’s genetic material, but other things can cause a reaction.

"It’s a big mess," Christensen said of efforts to make such a diagnosis.

Christensen said these unknowns have divided most physicians into one group that doesn’t believe Lyme disease has occurred and treats the symptoms and another group that aggressively treats the disease with antibiotics.

"I’m kind of right in the middle," Christensen said. "I don’t think either group has got it right."

Confusion like this drove Cooper to type a one-page letter.

"If you run into a doctor that says Lyme disease doesn’t exist, it’s time to find another doctor," said Adam Boster, Cooper’s brother-in-law.

Yates said that of Missouri’s 15 cases of Lyme disease in 2004, three affected residents of Boone County. The state department of health says the incidence of the disease was 2.21 per 100,000 in Boone County, compared with the state average of 0.46 per 100,000.

No confirmed Lyme disease case has been fatal.

"It’s a chronic illness, but it’s not considered to be lethal," Christensen said. "It’s the complications."

The CDC lists several tips to protect against ticks: Avoid tick-infested areas, wear light-colored clothing, use tick repellent and perform daily tick checks.

If someone finds a tick embedded in his or her skin, the CDC Web site recommends using fine-tipped tweezers to grab the tick close to the skin and gently pull it straight up to keep its head intact with its body. After handling the tick, wash hands, clean the bite and watch for signs of illness.

As Cooper’s family members mourn, they are preparing for a service at 2 p.m. tomorrow at Memorial Funeral Home. They have asked for donations to the National Lyme Disease Association because they know - through Cooper’s letter - how important Lyme disease education can be.

"I hope that whoever reads this letter will have better understanding of what it is like to live like this," Cooper wrote. "Please, I need all the support I can get because I am not getting better only worse."