Stacy Johnson has been an actor, singer, director, producer and stuntwoman, appearing in high-profile projects like “Ozark,” “Heroes” and “The Greatest Showman,” in which she breathed fire. But one of her toughest roles is battling Lyme disease, which brought her to Greenville to work with Dr. Jeffrey Lawson at Piedmont Arthritis Clinic.
“I couldn’t find people in L.A.,” she says, or in other places where she searched for answers, including Atlanta and North Carolina. But when she eventually connected with Lawson, he and his team “came up with concoctions that help.”
And after spending more time here, Johnson decided to open an acting studio in Greenville “for students who are serious, and it’s their dream and they are willing to put forth the effort.”
She is also finalizing a documentary about Lyme disease, currently slated to run on Netflix later this year, called “Lyme Disease: Beating Back Death.”
Johnson contracted Lyme disease from a tick bite, likely in 2005, and had the disease for more than a decade before being diagnosed.
“They tested me for everything,” she says of the numerous doctors she saw. While Lyme often presents with fatigue and aches, Johnson had central nervous sytem and cardiac responses, including her heart stopping in a Chicago McDonald’s in 2015. Once she was resuscitated, doctors still couldn’t find what was wrong. Some told her she was just “crazy” or “depressed.”
Lawson saw her in 2016 and ruled out leukemia, anemia, lupus and other diseases before recognizing Lyme, which isn’t endemic to South Carolina.
He participated in the documentary, and says the point of the film is to let people know about what they can do to prevent Lyme. If people have a tick bite but take an antibiotic right away for three weeks, “that will eliminate the bacteria and keep people from getting Lyme,” he says.
If patients wait, the immune system becomes altered and thinks the bacteria is still present even after it has been eradicated. “Then you have to calm down the immune system to keep it from attacking the body,” he says.
While Johnson is doing better, and is also in remission from cervical cancer, she still feels the effects of Lyme, including pain, inflammation and reduced stamina.
She channels her frustration with the disease into her roles, which she finds therapeutic. She leaned into horror films, where she could be angry and there was less of a focus on appearance on the days she wasn’t feeling her best. She was recently in the cast of “The Conjuring 3: The Devil Made Me Do It.”
She is also focusing her energy on helping others, which is why she is expanding her acting studio. Set to open in about three months, the Greenville studio will supplement her Atlanta location, SJD Acting Studio, where she has five employees working with students.
“This isn’t a studio where you would just be coming for fun,” she says. “This isn’t in and out.” She interviews students prior to taking them on, and says her inside knowledge after decades in the industry is a major perk. “Most acting studios, the owners have never worked on a set,” she says. “I’m one of the only ones in this area that actually directs, produces and acts.”
Since she is frequently on location or traveling for work, her Greenville studio will be run by her assistant Stephanie Wood Talley, but Johnson will stay involved.
“I just want to share my knowledge,” she says. “Knowledge is power when it comes to this industry.”
A few facts about Lyme Disease
It’s the most common vector-borne disease in the U.S.
It’s caused by the bacterium Borrelia burgdorferi
It’s transmitted through an infected blacklegged tick
Symptoms include: Fever, headache, rash, fatigue. The disease can spread to joints, heart and nervous system.
Region: Typically found in the northeastern and north central U.S; rare in the Southeast
Prevent it: Use insect repellent, remove ticks promptly; use antibiotics promptly if exposed.