Nickander to start Lyme disease support group
By Mark Ambrogi
Kari Nickander knows she is not alone as a sufferer of Lyme disease.
“I was misdiagnosed and this is the story of many, many people,” she said.
It took Nickander 20-plus years before she learned she had the bacterial disease caused by deer ticks or black-legged ticks on the West Coast. If discovered quickly, most cases of Lyme disease can be successfully treated with antibiotics in a few weeks. If not, it can become a chronic condition.
“I was told I had RA (rheumatoid arthritis), and it turns out I had (Lyme disease) the whole time,” Nickander said.
The 49-year-old Cicero resident, who graduated from Noblesville High School in 1985, was finally correctly diagnosed approximately three months ago, and she is planning to start a support group.
“I know there a ton of people out there like me but really don’t have anywhere to go,” Nickander said.
She said having a group of people experiencing things helps to share information. She said she isn’t sure when she contacted it but does remember being really sick when she lived in Seattle years ago, so it’s possible it occurred then.
Nickander said the test for Lyme disease is often inaccurate, and it’s becoming an epidemic condition.
“There are a lot of people out there feeling super alone like I am,” she said. “For me, it ranges quite a bit. I do one day of work, (and) I’m basically shot for four or five days. It’s a neurological disease. It’s in your bones.”
Nickander said she occasionally has a knockout, where she can’t move or talk for a couple of hours.
“Then I lose function in my hands and arms,” she said. “I’m lucky I don’t have a lot of psychological things at this point, but a lot of people do. I don’t have depression the same as some others. I just get depressed because I can’t actually function.”
Nickander meets with a nonprofit, Indiana Lyme Connect, in Zionsville once each month, but she said that group is more about creating awareness.
Nickander is married with two children, Ava, 10 and Otto, 11. Her children attend Our Lady of Grace Catholic School in Noblesville. She said her new diagnosis explains some of the children’s health issues, as she likely passed the disease to them in vitro.
Those interested in joining the support group should email firstname.lastname@example.org.
“This will help people not feel so alone in the journey because it’s a really long one, and you get really sick,” Nickander said.