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Sophy Merszei: Update on Chronic Lyme Disease

Rosanne Ullman | May 30, 2017 | 9:49 AM

Before bidding goodbye to the National Lyme Disease Awareness Month of May, Healthy Hairdresser got in touch with NovaLash founder Sophy Merszei, whose battle with Lyme disease was profiled by MODERN SALON two years ago. Because her condition was not accurately diagnosed for many years, Merszei says she suffers from “chronic Lyme,” which is a controversial diagnosis; the Centers for Disease Control and Prevention (CDC) prefers the term “Post-treatment Lyme Disease Syndrome” (PTLDS), and doctors disagree about whether Lyme disease persists in the body or the array of symptoms can be attributed to other causes.

Merszei believes she was probably infected with Lyme disease when she was five years old, contracting it through tick bites while growing up in New England. Although the classic “bull’s eye” rash can be a giveaway clue, many people never identify a rash on the body. It doesn’t always present as a bull’s eye and, if the tick bite occurs on the back or scalp, the victim is unlikely to ever see the rash. Other symptoms range from flu-like fevers, chills and muscle pain to arthritis-level joint pain, extreme fatigue, sleep problems, memory loss and vertigo, which is the symptom Merszei finds the most troublesome.

When treated early with what Merszei says is a simple “$12 bottle of antibiotics,” Lyme disease is curable. But Merszei, now 44, never received that treatment. Instead, she was handed all sorts of misdiagnoses. She had her tonsils extracted unnecessarily and her gall bladder removed due to complications from taking antibiotics for strep throat without cutting back on salt. She began believing doctors who told her, “It’s all in your head,” because at least there was therapy for that.

“I was willing to do anything to get these symptoms to go away,” Merszei says. “Especially when I was younger, I trusted the doctors’ expertise. If you tell me I’m crazy, I’ll do everything I can to make myself stop being crazy.” The psychiatrists helped her sleep better but, other than that, were unable to alleviate her symptoms.

Some years were better than others. Merszei is married to a physician—she mentions the irony of this combined with her own graduate work in molecular biology and microbiology—and during calmer times she was able to have her two children, although her pregnancies worsened the symptoms. Finally, about five years ago, one doctor wanted to test her for Lyme disease.

“I said, ‘No way, I can’t have that,’” Merszei recalls. “I thought that happened to people who went camping all the time, and I’m such an indoor person. I wasn’t thinking back to my childhood, because I didn’t know Lyme could stay in your body.” The test came back negative but, with experience in the lab and teaching biology, Merszei recognized an irregularity in the test results. She had the test retaken and, this time, the results were positive.

While solving her medical mystery has cut some of Merszei’s frustration, it hasn’t given her a lot of hope for relief. She has been trying medication but mostly still suffers from a variety of symptoms, including fatigue, muscle and joint pain and vertigo. The test also identified two bacterial infections, which she says she’ll address with a regimen of antibiotics when she feels she’s strong enough. Her life continues to be challenging.

Merszei’s advice to everyone is to cover up when you’re in the woods and to check all of your skin and scalp for tick bites, especially in late spring and early summer when new ticks are hatching, hungry and so tiny that you won’t see them. She recommends using an insecticide containing the effective ingredient DEET, which developed a questionable reputation about its toxicity but now is considered by the EPA as safe for normal use.

Merszei observes that dogs get checked ticks all the time. “If I’d gone to a vet,” she says, “I would have gotten diagnosed, received my $12 bottle of antibiotics and been fine.”

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