Lisa Najarian is a woman on a mission—she understands the destruction a tiny tick can wreak on people’s lives. She went 16 years of experiencing symptoms of Lyme disease and seeking help from many physicians without ever receiving a diagnosis, finally to be diagnosed with Lyme when she moved to the Twin Cities. “I didn’t want other people to have to go through the same long years I did—not knowing what’s wrong,” she says. Together with her husband, television personality and options trader Pete Najarian, she founded the Twin Cities Lyme Foundation.
Lisa never thought about Lyme disease when she experienced the first symptoms—hearing loss and ringing in her left ear. She was living in Chicago. Looking back, she believes she became infected with Lyme when gardening. She began to experience other symptoms, like fatigue, brain fog (a general term for problems with focus, memory and learning), heart palpations, migraines and many more.
One of the most difficult things about having Lyme disease is that the symptoms are similar to those of many other diseases. Known as “the Great Imitator,” Lyme can present as anything from a sore throat to multiple sclerosis to arthritis, and symptoms can change from one day to the next.
“It can look like syphilis, it can look like ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease),” says Lisa.
Also adding to the difficulty of diagnosis, says Lisa, is Lyme’s unpredictability. “The symptoms wax and wane,” she says. “Some days I would feel really good, and then I would be completely wiped out. And a lot of symptoms are vague, like fatigue and brain fog. I know some people thought I was crazy, and some people thought I was lying.” Additionally, blood tests for Lyme are not always accurate. “And most Western doctors don’t understand Lyme,” she says.
Not knowing what was causing her symptoms wasn’t the only frustration in the 16-year search for a diagnosis—it was also extremely costly. Lisa, as with many people infected with Lyme, went to multiple specialists in search of a diagnosis. “People pay all kinds of money for specialists, just to hear the specialist say that they don’t know what it is,” says Lisa. “I had all the puzzle pieces, but they didn’t make sense. I went to ENT doctors, a cardiologist, a rheumatologist, but the Lyme was never diagnosed. That’s why it’s so important that people see a LLMD,” she says. (LLMDs, or Lyme literate MDs, are doctors specifically trained in diagnosing and treating Lyme disease. They usually follow treatment guidelines of the International Lyme and Associated Diseases Society (ILADS.)
The Twin Cities Lyme Foundation’s mission: “Creating awareness and aid in the early detection of a Lyme literate diagnosis of Lyme disease. By doing so, we provide a Lyme disease screening assessment to help potential recipients receive aid. Our participating Minnesota Lyme literate practitioners provide accurate Lyme disease testing through our funding.”
The foundation is entirely funded by donations, says Lisa. “It takes at least $1,000 to diagnose one person with Lyme,” she says. “We want to encourage people to go to our website and donate, because without donations, we’re not able to help anyone. In September, the organization held its first annual gala to raise funds. It was sold out, and raised $148,000, exceeding its goal.
Lisa says that one day, Lyme will be like cancer, in that if someone has cancer, it can be diagnosed and treated, whereas people with Lyme disease very often go years without a diagnosis and years without being treated. Getting people with Lyme diagnosed and treated is the organization’s priority.
“We (the Twin Cities) are the second hot-spot in the country for Lyme,” she says. “We need to help everyone who is suffering.” At this time, there are two physicians participating in work of the foundation—Laurie Radovsky, M.D., at Birch Tree Healing Arts in St. Paul and Dr. Jonathan Otten at Minnesota Natural Medicine. The foundation is seeking additional LLMDs
“There are so many misconceptions about Lyme,” says Lisa. “And that’s why education is so important. Like cold weather—people think that you don’t have to worry about Lyme in the winter because cold kills the ticks. But not always. You need temperatures below 10 degrees Fahrenheit before they die. But it needs to be that temperature consistently.
Pete Najarian is a big supporter of the foundation, says Lisa. “Lyme affects the entire family,” he says.
“Some spouses don’t get what’s going on. And some are not very nice. The person who has Lyme feels like they’re going crazy and like they’re an oddball, and if a spouse isn’t supportive, it makes it even harder,” Lisa says.
Pete is one of the spouses who understands the struggle of people with Lyme, says Lisa. “I wouldn’t have been able to get through all these years without Pete,” Lisa says. “I don’t like to be doted on and I don’t want people to feel sorry, for me. But Pete isn’t like that. He listens and is receptive. Pete gets it as much as anyone can get it who doesn’t have it themselves.”
- If you have any suspicion at all that you might have Lyme disease, see a LLMD right away. The longer it’s in your system, the more damage it will do. Lyme can be fatal if not treated properly.
- If you’re out hiking, it’s smart to wear white socks over the top of your pants. The white color will allow you to see ticks more easily.
- When you’re outside, spray your clothes and your gear with insect repellent containing permethrin, but don’t spray it on your skin.
- Empathize with your spouse. All their symptoms don’t mean they’re crazy—they mean the person can potentially have Lyme.
- Remember that being the spouse of someone with Lyme is difficult, too.
- Trust your spouse—they may look great on the outside, but there’s no reason to doubt what is going on for them on the inside.