After one of family members was diagnosed with Lyme disease, actor Chris Meloni had a lot of questions, but he knew one thing for sure: Life as he knew it had changed.
“If Lyme disease is part of your life, your life will literally will never be the same,” the “Law & Order: Organized Crime” star tells TODAY.com.
As an ambassador for the Global Lyme Alliance, the father of two has recently been focused on raising awareness of the tickborne illness, especially how difficult it can be to diagnose in some people. In the fall, he and his wife, Sherman Williams, attended an event for the organization, where he gave a speech.
In an Instagram post about the evening, he called Williams “a tenacious warrior” for efforts to help their family member get the care they needed.
In an interview with TODAY.com, Meloni opens up about his family member’s journey with Lyme disease and his advocacy work.
Chris Meloni’s family history with Lyme disease
The Lyme disease warning signs in his family member were a bit confusing at first, Meloni explains — and there were quite a few of them.
“We first thought we were dealing with the stomach flu,” he recalls.
Antibiotics seemed to remedy the issue at first, but symptoms soon returned, including brain fog, fatigue, joint pain, migraines and depression.
“Before you know it, you’re dealing with a completely debilitated human being,” he recalls of his loved one.
After a litany of tests and visits to specialists, from gastroenterologists to neurologists, a diagnosis finally came back. Beforehand, Meloni didn’t know much about Lyme disease, a condition that the Mayo Clinic describes as an “illness caused by borrelia bacteria,” most often spread by tick bites.
Majority of Lyme diseases cases are successfully treated with antibiotics, according to the National Institute of Allergy and Infectious Diseases. But for some people, symptoms can persist after treatment, namely pain, fatigue and brain fog. More research is needed to better treat people with post-treatment Lyme disease syndrome, per the Centers for Disease Control and Prevention.
The 63-year-old notes that navigating the Lyme disease landscape isn’t for the faint of heart.
“For those who are witnessing it, you are quite literally watching the people you love being tortured before your eyes,” he says of his family member’s prolonged symptoms.
Watching a loved one navigate a “very debilitating disease” hasn’t been easy for Meloni. While his family member is improving, he’s still hesitant to celebrate.
“You pick yourself back up and you just have to climb the mountain again,” he says of his loved one’s Lyme disease journey. “Now, when things are fantastic, I don’t want to fall down the mountain. So things are going along well today. Talk to me tomorrow.”
Chris Meloni’s Lyme disease advocacy
These days, the actor is soaking up as much information as possible from the Global Lyme Alliance, as well as his wife, whose quest for answers about the disease inspired him.
“If it weren’t for my wife, and her dogged determination, we wouldn’t have gotten to the bottom of what the issue was,” he says.
Meloni says his wife was the first to discover the Global Lyme Alliance, and he’s grateful for the sense of community the organization has given them.
“Community is very important. … The Global Alliance is a very specific tribe of people that are either directly impacted or, like me, secondhand affected by it,” he says.
The actor encourages anyone else who might be experiencing health issues to “be your own detective” and maintain a positive attitude, even though that’s not always easy.
“You either live in the darkness or you live in hope. I guess it’s hope with a jaundiced eye or you just have to lean towards the light,” he says.