Living with Lyme disease
Deborah Lazar, 63, of Putney, Vt., was diagnosed with Lyme disease on Aug. 15, 2015. That means the tick bite must have happened three to 32 days before then, according to most case reports.
Traveling all over the United States competing in plein air painting events, Lazar found herself in Castine, Maine, last summer. Upon returning home, she said she felt "super tired." But she had also just painted for three days then framed her art and participated in a reception afterward.
"It's a lot of work. It's very intense," said Lazar, who thought her sleepiness was normal. "But a week later, I noticed a red circle on my wrists. It made no sense. I thought it was a spider bite."
Lazar contacted her doctor on a Friday and was told to call back if the mark enlarged. By Sunday, she said the mark had "enveloped my entire wrist" and she had discovered nine spots that were "brilliant red with black and blue centers."
The doctor saw Lazar and informed her that she had early disseminated Lyme disease.
"I never saw a tick," Lazar explained. "I never knew I had a tick bite and that is one of the characteristics of Lyme people need to beware of; you will not feel a tick bite."
The Centers for Disease Control and Prevention estimate there are 25,000 Lyme disease cases each month. The disease is believed to infect about 300,000 people a year. According to the International Lyme and Associated Diseases Society, fewer than 50 percent of patients with Lyme disease recall getting a tick bite and the same number recall any rash.
Lazar took antibiotics for five months and feels better now. She estimates she has about 80 percent of the muscle strength back in her leg.
Soma Dinicola, 35, of Pittsfield, Mass., was not as fortunate. Her health issues began around the age of 12 when she suspects she was bitten. Since then, life has never been the same.
Dinicola did not see the same kind of spots Lazar did. Hers were more like a spider's bite, she said.
"Shortly after that, I exhibited some strange symptoms here and there," she said.
She started feeling sick and was staying home more and more. She was experiencing dizziness and blackouts.
Gradually, Dinicola said, it got worse.
Trying to keep a full-time job became difficult for Dinicola, who said she couldn't concentrate and those same symptoms kept returning. She moved with her daughter and husband to the Berkshires in 2003.
After the birth of her son two years later, the fatigue became overwhelming for Dinicola. She said she could not get out of bed.
"They would do every blood test and they would find nothing. They would diagnose me with fibromyalgia," she said, referring to what the Mayo Clinic defines as a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues.
Dinicola went to between 20 to 25 doctors and specialists, she said, knowing it was something else. From 2005 to 2010, she had three different jobs. But she always left them after feeling too sick to continue.
The severe pain in the bones, muscles, joints and nerves was too much for Dinicola, who ended up breaking her back and rupturing a disc in her spine in 2011. Completely bound to her bed, she said she was given a few nerve blocks. Later, she found out, she was only making things worse
A family chiropractor advised Dinicola to see a "Lyme-literate" doctor.
"A lightbulb went off after all these wasted years," Dinicola said.
After a fresh diagnosis, she was put on immediate and aggressive treatment that included taking about 30 supplements a day plus antibiotics.
"It was a daily task. It still is a daily task," Dinicola said.
To find a doctor, she suggests people visit the International Lyme and Associated Diseases Society's website at ilads.org.
"The common Elisa test you receive at your doctor's office misses 35 percent of culture proven Lyme disease," the group states. "Some studies indicate up to 50 percent of the patients tested for Lyme disease receive false negative results."
According to the ILADS, 40 percent of Lyme disease patients end up with long-term health problems.
In order to avoid another case of Lyme disease, Lazar now checks herself regularly and thoroughly.
"If you go outside, you should tuck your pants into your socks because they need to attach to your skin," she said. "So the more you can protect your skin from attaching to it, the more protected you are."
The Vermont Health Department suggests applying an Environmental Protection Agency-registered insect repellent on skin and clothing can be treated with a chemical called permethrin. Long-sleeved shirts and long pants should be worn when possible. Daily tick checks are helpful, too.
Ticks should be removed promptly, according to the Health Department. And showering within two hours of coming indoors has proven effective in preventing Lyme disease.
Dinicola said she has been on permanent disability since 2011. She was put on pain management last year but still experiences plenty of suffering. Doctors say symptoms will last forever but continuing treatments would not hurt in fighting them.
"It's kind of depressing because you live with it every year. Unfortunately, I'm very, very used to it," said Dinicola. "You have to be your own advocate. You know your own body."
Contact Chris Mays at firstname.lastname@example.org or 802-254-2311, ext. 273.
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