Race planned to benefit Amherst families with Lyme

AMHERST – One April evening two years ago, Lois Johnson noticed a small blotch on her thigh after gardening in her Amherst backyard.

It wasn’t the bull’s-eye rash that’s indicative of Lyme disease, but she was concerned.

When she called her doctor’s office and talked to a nurse practitioner, the nurse said it came from a wood tick, and not to worry. But when flu-like symptoms started, her two daughters encouraged her to call again.

Health care providers again “poo-pooed her … and we didn’t put two and two together,” said Valerie Casanave, one of Johnson’s daughters.

Eventually, a doctor diagnosed Lyme disease and started her on the antibiotic doxycycline, but by then it was “too little, too late,” Casanave said.

That was in 2012, and Johnson, 67, has been sick ever since.

Johnson spends three or four days a week in bed “with horrible symptoms,” Casanave said, and the disease has devastated her family.

Tick bites can infect people with several different kinds of bacteria, and Johnson has been diagnosed with co-infections.

“She has been to several doctors, been through dozens of tests and has been on many treatments,” her daughter said.

There is ongoing controversy about the appropriate treatment for Lyme, a bacterial disease spread by certain kinds of ticks, and Johnson’s insurance, like most insurance, doesn’t cover long-term treatment.

The financial burden has forced Johnson and her husband to put their house on the market.

To help their parents, Casanave and her sister, Elissa Johnson-Mullin, are planning their second annual 5K race called Lois’ Race Against Lyme on Saturday, Sept. 27, at Mine Falls Park in Nashua.

Profits will help the Johnsons and another Amherst family, Dick and Polly Brown, both of whom have serious cases of Lyme disease, pay for their ongoing treatment.

Another goal of the race is to spread the word about Lyme diagnosis and treatment.

“We hope to help educate others on taking precautions and the importance of getting treatment immediately if they are bitten by a tick,” Casanave said.

The number of people in her circle of friends and acquaintances with long-term Lyme disease is alarming, she said.

They include a close friend from high school, her massage therapist’s daughter, “the guy who does the pest service at our home, my sign language professor from college, both parents of my college housemate, and my sister’s good friend and yoga instructor.”

Lyme has a myriad of symptoms, Casanave said, including extreme dizziness, fatigue and waking in the middle of the night with horrible aches.

The sisters are working with Millennium Racing, which will professionally “chip time” the race using timing technology attached to each participant.

Last year’s event was a success, Casanave said, attracting 80 runners and earning more about $5,500.

Local businesses that support the race include A&E Diamonds, Souhegan Valley Motorsports, Jeca Yoga, Constellations Behavioral, Peniel Environmental and Edmonds Landscaping.

The race will begin at 10 a.m. There will be entertainment for kids.

For more information or to help sponsor the race and have your business name and logo on a T-shirt, email
loisraceagainstlyme@gmail.com.

T-shirts go to the first 100 entrants and awards go to the top overall and age-group champions.
To learn how to register online, visit www.facebook.com/loisraceagainstlyme.

Kathy Cleveland can be reached at 673-3100, ext. 304, or kcleveland@cabinet.com.