Vincent Sota

In Memory of Vincent Sota

Firefighter in battle with Lyme disease

Tamara Lush

St. Petersburg Times

Hudson, Florida

December 10, 2000

As a firefighter and EMT, Vincent Sota spent the past decade saving lives.

Now, he must rely on others to save his.

More than a year ago, Sota was diagnosed with amyotrophic lateral sclerosis, a fatal, degenerative disease of the nerve cells commonly called Lou Gehrig's disease, that leaves its victims unable to walk, talk or move.

Sota, then 45, was given two years to live.

His symptoms started with a nagging twitch in his chin and slurred speech. He took a leave of absence from his job at Pasco Fire Rescue in August, and now, he can't talk or move his left arm. He has gone from a strapping 230 pounds to 150 pounds on his 6-foot-2 frame.

Mary, his wife, refused to believe the ALS diagnosis. She researched the Internet for more information.

"I was desperate," Mary Sota said recently. "We were willing to take our chances."

A paragraph in one article said that the symptoms of Lou Gehrig's disease -- facial twitching, slurred speech, weight loss -- were also that of Lyme disease, caused by bacteria contracted contact with ticks. Lyme disease is easily treatable with antibiotics if diagnosed early, experts say, and is more common in northern states than in Florida.

"We hike, we camp, we've seen ticks," Mary Sota said. The family had vacationed in Minnesota, a hotbed of Lyme-carrying ticks. At some point, she's not sure exactly when, she noticed a rash on Vincent's torso, which is one of the main symptoms of Lyme disease. It went away, and she didn't much pay attention to it.

But as she read more about Lyme disease, she became more convinced that it, not ALS, was plaguing Vincent.

"Lyme disease is called the great imitator," Sota said.

But doctors weren't as convinced. In all, Vincent was evaluated by 15 doctors, and most told him that he had ALS. When Mary Sota told one neurologist about her Lyme disease theory and the need to put Vincent on antibiotics, the doctor told her that he had no idea what she was talking about.

The last doctor they saw diagnosed him with Lyme disease, said Mary Sota.

Lisa Conti, a public health veterinarian for the Florida Department of Health, said there are about 50 cases of Lyme disease reported every year in Florida. About two-thirds of those cases are people who contracted the disease in other states.

Nationwide, more than 128,000 cases of Lyme disease have been reported in the U.S. since 1982, according for the Centers for Disease Control in Atlanta.

Part of the confusion with many Lyme disease diagnoses is that many tests for it yield false positive results, Conti said. Vincent has taken three different tests for Lyme Disease, and on the most accurate test, he tested positive.

Vincent's latest doctor has put him on antibiotics for four months. He also has a feeding tube in his stomach because he can barely swallow.

While Vincent struggles to scrawl a few letters on a piece of paper, his wife is fighting for him. She has taken a leave of absence from her part-time job as a printer at the Pasco County Sheriff's Office so she can care for her husband.

She spends hours on the phone each day with insurance companies, and tries to keep the family's life as normal as possible for the couple's two children, aged 7 and 5.

"When you have a wonderful husband, you want to keep him around," she said. "I will fight to his dying breath, which should be around the age of 99. I'm not going to settle for anything less."

Mary Sota credits their "family," the employees at Pasco Fire Rescue, for helping them in their darkest hour. Volunteers have worked Vincent's shifts so he will still get paid and donation boxes have raised enough to buy the family groceries.

Without the donations and help, the Sotas bring in his regular salary, but because Sota is not working and due to the additional medical expenses, the money is not enough to pay the mortgage or raise two children.

"(Pasco Fire Rescue) has kept this family going," she said. "They know how strong he is."

© St. Petersburg Times, published December 10, 2000

(Vincent Sota lost his life to Lyme disease in July, 2002)