Lauren Lovejoy had spent over a year bedridden, under the care of her parents. She’d seen more than 60 medical practitioners who’d diagnosed her with psychosomatic issues or generalized anxiety. Some said she wasn’t sick at all.
None had been able to diagnose her with what she really had: Lyme disease.
Lovejoy, who’d worked in a legal office while attending graduate school, had lived a normal life until she was 26. Then, while driving eight hours from Newport, Virginia, to Atlanta, Georgia, to get a new tattoo, she began to experience what felt like a panic attack: lightheadedness, anxiety and fatigue.
She’d made the trip numerous times before without issue. This time was different. Something was wrong.
“It started slow, but by the time I got to the Georgia border,” Lovejoy wrote in an email. “I was shaking and having an almost out of body experience.”
She made it to the tattoo shop and gathered herself enough to sit through the entire session. Afterward, during the slow drive home, her condition gradually improved. She chalked the whole thing up to a one-time experience.
But in the following months, her health declined. She experienced episodes of faintness. She never lost consciousness but could barely sit up in a chair. As she slowly became sicker, she realized she could no longer function properly.
“After a year of losing my independence, my job, my education, most of my friends and just about anything that had given my life purpose, this was an absolute low for me,” she wrote.
She called a holistic clinic to find answers. A nurse told her they couldn’t take her as a patient because she lived too far away, but her symptoms indicated Lyme disease. He recommended she go to Jemsek Specialty Clinic in Washington, D.C., a facility dedicated to studying and treating the disease.
By that point, she’d been tested for Lyme twice. Both tests came back negative. But she was desperate, she said, and followed the nurse’s advice. This time, her tests came back positive.
While researching her condition, Lovejoy discovered her story was very common and that hers was far from the worst case. She read stories from hundreds of thousands of people who’d lived through the same hell as she, of searching for answers and going from doctor to doctor with no solution.
“I didn’t know what I could do, but I knew it was my job to try to keep this from happening to as many people as possible,” she wrote.
One year later and still homebound, she created Lyme Warrior, a nonprofit organization that raises money and brings awareness to Lyme disease.
“I created Lyme Warrior as a place where all those struggling with the limitations of Lyme could find a way to fight back against the disease,” she wrote.
Lovejoy found many others in the Lyme community who shared her passion for tattoos. Tattoos gave her and others a sense of control when they felt helpless, she said. When fighting a chronic illness, you can never have too many things to empower you.
“I asked some of my artist friends if they would host a day of awareness in their tattoo shops, and they enthusiastically supported the idea,” she wrote. “It grew from there.”
Lovejoy started Ink to End Lyme in 2017 with multiple tattoos shops hosting the event. In the beginning, she was afraid her organization would never make a real contribution to Lyme research. But in its first year, it raised $10,000 and was so successful that she decided to do it
again this year, expanding it to 36 locations across the country.
“Ink to End Lyme was the turning point,” she wrote. “The tattoo community was the first one to make a difference and help when no one else would.”
Dave Porter, owner of Hellcat Tattoo in West Palm Beach, said he was thrilled to be a part of the event in 2018. He’d previously hosted other fundraising events at his shop for March of Dimes and Susan G. Komen.
Porter purposely scheduled the event on his birthday, Feb. 17, and told others to donate to the cause instead of giving him gifts. The shop created a special deal of small tattoos for $50, chosen from a design sheet, with proceeds going to Lyme Warrior.
“I really wanted to do some nice little tattoos for people and make some money to give,” he said.
Porter, who grew up in Colorado where deer ticks carry Lyme disease, said he has friends who have the disease. Through Ink to End Lyme, he’s learned even more about it.
“It’s crazy no one really knows about it because it’s so common,” he said.
Half of the money raised this year went to Eva Sapi, a professor of cellular and molecular biology at the University of New Haven. Certain antibiotics, she found, can increase the number of bacteria that cause Lyme disease, but liquid Stevia extract can eliminate the bacteria and fight its most resistant forms in a human.
Lovejoy went through multiple rounds of antibiotics but saw no improvement. A year ago, she stopped using them and tried herbal tinctures and supplements.
“One year later, today, I would call myself 50 percent recovered,” she wrote.
In accordance with Sapi’s research, she uses Stevia extract and other natural remedies while traveling to numerous states and different clinics with her boyfriend to find improved treatment.
She believes alternative medicine, though not accepted by most modern medical practices, will lead to better approaches to treating the disease.
Lyme Warrior and fundraising events like Ink to End Lyme, she said, allow her to support researchers who are making impacts in the Lyme community.
“I’m still homebound and fighting Lyme disease,” she wrote. “But Lyme Warrior gives me a way to give back despite my health challenges.”