Minnesota woman's long battle with Lyme disease inspires her to start foundation
GRANT, Minn. — Lisa Najarian sipped her chamomile tea in the kitchen of her Grant home Monday and sighed.
"September's a bad month for me," she said.
The symptoms of the Lyme disease she has suffered with for 19 years were affecting her. She acknowledged them — fatigue and brain fog — and then pushed them aside to keep talking about her project, Twin Cities Lyme Foundation, and the $148,000 raised at its first gala on Saturday, Sept. 8.
The foundation uses an assessment tool to help those experiencing poor health determine if they have Lyme disease. The foundation donates $1,000 per person toward getting a diagnosis and connects people with doctors who have been certified by the International Lyme and Associated Diseases Society.
"My mission is to help people get better," Najarian said. "I wish I'd had somebody like me to take me under their wing and say, 'Let me get you to somebody who can help you.' "
The first symptoms
Najarian doesn't know when she contracted Lyme. She never had the telltale bulls-eye rash. Her symptoms started in July 1999 while living in Illinois. She woke up one morning and her left ear was plugged and ringing — a symptom she still has today. After that came terrible vertigo, heart palpitations and migraine headaches.
She was misdiagnosed with Meniere's disease, something historians believed Vincent van Gogh may have had when he cut off his ear.
In the days and weeks after a person is bitten by a tick, bacteria spreads through the bloodstream. Lyme is often called "the great imitator" because it can appear to be something else, such as Meniere's disease, fibromyalgia, ALS (Lou Gehrig's disease) or others.
Najarian is married to Pete Najarian, a former Gophers and Vikings linebacker, and they have two children, Lex and Kole. In 2007, the family moved to Connecticut, about an hour from Old Lyme, where the disease was first diagnosed in 1975.
While in Connecticut, she had a series of symptoms that sent her to specialists as she tried to understand what was happening to her body.
In September 2010, she was hosting friends for dinner when she suddenly felt ill. She excused herself and went to her room, where she was overcome by vertigo and a terrible migraine.
"I said, 'I think I'm going to die,' " she said. After a trip to the emergency room that required morphine to mask the pain, she was bedridden for two weeks.
"The kids were pretty worried," Pete Najarian said. "The answer part of it is the most frustrating. She saw so many doctors."
While in Connecticut, she even took a Lyme disease test, but it was negative. She learned later that blood tests are not reliable because the disease pulses, which means it flares up and then appears to go dormant.
How to manage Lyme
Najarian said the foundation's assessment test lists 109 symptoms for Lyme, some of them neurological, such as claustrophobia.
In 2014, Pete's brother Paul died and the family moved back to Minnesota to be close to Pete's parents. His father is John Najarian, the well-known University of Minnesota transplant surgeon.
When they bought their house in Grant, they were disturbed to find its 13 acres infested with ticks. They spray the grounds monthly with permethrin to keep them away. According to the U.S. Centers for Disease Control and Prevention, Minnesota had 1,304 confirmed cases of Lyme in 2016.
In 2015, Najarian took the Lyme test again and got a positive. She called that moment "a silver lining."
She's on a regimen of diuretics every two weeks to keep inflammation down. She also uses natural medicine such as Monolaurin and oil of oregano. But the bacteria has been in her system so long that it has caused irreversible damage, such as the hearing in her left ear and the chronic fatigue.
She got the idea to start a foundation to help others after talking with Brant Rooney, who maintained the Koi pond on their property. He spoke at the gala, relating how his wife had Lyme.
"She suffered from severe migraine headaches," Najarian said. "He woke up one morning and got the if-you-are reading-this-I'm-already-gone letter." Rooney's wife left the note on the bathroom mirror, went to her favorite park and shot herself.
Najarian said it's stories like these that push her to get the word out to people who may have Lyme disease but don't know it.
"It makes me sad," she said. "Because I almost feel like, had I been able to get a hold of her, I would have been able to help her."
To get assessed for Lyme or to donate to the foundation, go online to twincitieslyme.org.