Living with Lyme is living with an invisible disease.

According to the New York State Department of Health, there are more than 7,000 cases of Lyme disease reported every year. It's an illness that can have a variety of symptoms, varying person by person.

“My test was negative. It didn't become positive for two years,” said Deborah Tooker.

Tooker was diagnosed with Lyme four years ago. She says mild symptoms still linger, though it was initially much worse.

“This head buzzing kind of thing, it's like a head vibration its really kind of annoying…at one point, my right foot was paralyzed. So you can have, nerve pain in all the different parts of your body,” said Tooker.

What You Need To Know

  • A support group for people impacted by Lyme disease meets monthly in Central N.Y.

  • People living with Lyme disease, or who have loved ones with Lyme disease, can exchange stories and advice

  • Anyone can start their own tick-borne disease support group

Carly Mayenzet’s daughter had symptoms impacting her quality of life.

“Gastro[-intestinal] issues, severe stomach issues, anxiety and panic. So it disrupted her entire daily life, our home life, her school life, her social life,” said Mayenzet.

These women turned to each other for a listening ear when the CNY Lyme Alliance started the Lyme & Tick-Borne Disease Support Group.

“This group is kind of just like your little village. You feel supported. You feel understood. It's a great way to bounce around ideas. And we laugh, we cry, we build friendships, relationships, and, really just help get through the bumps in the road along the way,” said Mayenzet.

Tick-borne diseases can have a mental toll. According to one study, people diagnosed with Lyme had higher risk for mental disorders and suicide attempts.

“A lot of times people are denied their truth. Their reality. They're told you're not sick. You don't have Lyme disease. When in fact they do and are very sick. And, so to come to a place where people already know what you're talking about, you don't have to convince them,” said Christine Herb with the CNY Lyme Alliance.

Group members say there is more people should learn about Lyme disease.

“People can go undiagnosed not being treated, because the fact that they have an infection isn't being recognized,” said Herb.

The CNY Lyme and Tick Borne Disease Support Group meets on the second Wednesday of the month at 6 p.m., in person at the Dewitt and Jamesville Library, and via Zoom.