October 17, 1998

Living with Lyme ... Bite from tick changes man's life

 

By TERRY TALBERT / Staff Writer
photo: KEVIN G. GILBERT / staff photographer

---

Daryl Lucas is "37 going on 77," he says, all because of a bug about the size of the period at the end of this sentence.

Lucas has chronic Lyme disease. He got it two years ago from an infected tick - probably while walking in the yard of his Pectonville Road home near Indian Springs.

"I don't remember what life was like before Lyme's," Lucas said.

He was forced to retire from his job as correctional officer at Roxbury Correctional Institution, south of Hagerstown, after more than 13 years. He had to stop driving because the disease damaged his ability to concentrate, he said.

He gets intense, "gnawing," bone-deep pains, migraines and shooting nerve pain.

"I used to be a wimp when it came to pain - before this," he said.

Lucas has short-term memory loss, loss of concentration, insomnia and extreme fatigue.

"Running? I wouldn't even attempt it," he said.

Each day the pain moves. Some days Lucas is more tired than others.

"Lyme disease is never knowing what's going to happen," he said.

Recently, Lucas agreed to participate in a study of chronic Lyme disease patients at the New England Medical Center in Boston.

"I wouldn't wish this disease on my worst enemies. If I can help them find a vaccine or a cure for this, it will be worth it," he said.

Nancy Lucas said when she pulled the tiny tick off her husband's shoulder in August 1996 neither of them knew much about Lyme disease.

That winter, Daryl Lucas got flu-like symptoms, and went to his doctor for antibiotics. The symptoms didn't go away. The red flag went up for the marksman when his arm hurt so badly that he failed his firearms recertification test.

"We went to our family doctor, to an orthopedist, a rheumatologist, a neurologist and a cardiologist," Nancy Lucas said. "Daryl had MRIs, bone scans and X-rays. Some doctors didn't believe him. No one could tell him what was wrong."

Last June, Daryl Lucas got another rash and saw a dermotologist who asked him if he'd ever been bitten by a tick.

Finally diagnosed, Lucas was put on antibiotics that usually quickly cure the disease. His symptoms continued.

"It was like the aches of the flu, only 10 times worse," Lucas said.

He was afraid to go to sleep, because he feared he wouldn't wake up.

"I thought I was dying," he said.

Dr. Mark S. Klempner, principal study investigator, said chronic Lyme disease patients are often misunderstood. He described their pain and its impact on them as "significant."

Among other things, the study is to see if intensive antibiotic therapy can help people with chronic Lyme disease. The five-year study is being funded by the National Institutes of Health.

Lucas is flown to Boston periodically for tests. His part of the study will last six months.

Lucas has had a spinal tap and nerve conduction tests. Last month, doctors put a tube in his forearm, so his wife can give him intravenous antibiotics.

"All that for a guy who's scared to death of needles," Lucas said.

Lucas had to give up his prescription pain medicine to be in the study.

The worst thing is that the Lucases don't know if Daryl is in the study group receiving antibiotics or if he is taking a placebo.

"If I knew this was sugar water going into my veins, I'd yank this thing out of my arm," Daryl Lucas said, looking at his IV tube.

A nurse comes to the Lucas home now to take blood and urine samples, which Nancy Lucas has to pack in ice and ship to Boston within 24 hours.

The Lucases said the disease has brought their family closer. They have three girls, 12-year-old Dawn, 9-year-old Robin and 7-year-old Wendy.

"He teaches me a lot about courage, and I've learned a lot about being selfless, about working for the common good of the family as a team," Nancy Lucas said.

The Lucases have also kept a healthy sense of humor.

They said they laughed when doctors put needles in Daryl's muscles to test his nerves, and his body suddenly began broadcasting Arabic music.

"Sometimes they pick up radio signals," Nancy Lucas said.

And then there is the play on words.

"I'm living in the Lymelight," Nancy Lucas said. "I'm a tick-ing time bomb," her husband added.

Daryl Lucas remains philosophical about his illness.

"I would prefer not to go through it, but we live with what we're dealt. That's what I try to instill in my kids - to make the best of it," he said.

Lucas is emotionally either "up" or "down." He said the "up" times have come from the kindness of others.

Correctional officers at RCI gave their sick time to Lucas to get his family through to the end of last year while he waited for the government to approve his disability. A church member gave them $1,000. Others have made donations.

"The worst thing with this is, how do you thank the people?" he said. "How do you ever thank them?"