If you have doubts about how bad Lyme disease is going to be this year, just spend forty minutes in the busy Wilton waiting room of Dr. Steven Phillips, a Lyme Literate specialist, or LLMD, as his phone rings nonstop. Those calling are from all over the country and are willing to wait more than five months for an appointment. The same scenario plays out across the state.
The example of one neighbor, who recently pulled thirty ticks off his dog after taking a short run, hammers home the CDC’s prediction that this will be one of the worst years on record for Lyme disease. Back in April, U.S. Sen. Richard Blumenthal visited the Connecticut Agricultural Experiment Station to urge residents to be vigilant considering the increase in disease-carrying ticks. He said: “I’ve listened to story after story from people in Connecticut whose lives have been decimated by these ticks and the diseases they carry.”
There’s good reason to be concerned. Take it from someone who’s been grappling with Lyme for five years. Despite the refrain that Lyme is “hard to catch and easy to cure,” most sufferers beg to differ, and have the stories and medical bills to prove it.
• Westporter Abby Lamb, now seventeen, became a different person overnight: From straight-A student, coeditor of the school newspaper, and member of the golf team at Staples High School, to not being able to get out of bed. Her mother, Patty, says, “Lyme disease and its coinfections derailed my family. It took eight months and many specialists to diagnose Lyme, then another year of unbearable treatments, testing and blood work before she started to feel slightly better. She missed her sophomore and most of her junior years, and experienced Lyme rage, labored breathing, migrating pain, tremors, noise and light sensitivity, and brain fog, to name a few symptoms.”
• Part-time Greenwich resident Ally Hilfiger was so debilitated by Lyme that she wound up in a psychiatric hospital. The thirty-one-year-old suffered for four years before getting a proper diagnosis, and went on to write about her grueling ordeal in her 2017 memoir, Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy and Almost Killed Me. Now a Lyme advocate, she sits on the board of the Greenwich-based Global Lyme Alliance.
With approximately 30,000 cases of Lyme in Connecticut every year, it behooves us all to understand everything we can about the disease. Here’s what you need to know to protect yourself and your family.
UNDERSTAND THAT INFECTED DEER TICKS ARE EVERYWHERE IN FAIRFIELD COUNTY. These creepy little bloodsuckers will catch a ride on deer, field mice, chipmunks, birds, insects, and our dogs and cats—almost anything found in your suburban yard.
‘LYME’ IS A CATCHALL FOR MANY BACTERIAL INFECTIONS with scary symptoms like facial palsy, arthritis with severe pain and swelling, inflammation of the brain, heart and spinal cord, and memory loss. To make matters worse, ticks infected with the rare Powassan virus (which can be deadly) were recently found in Bridgeport and Branford.
FOLLOW THE SYMPTOMS. Only 25 percent of patients recall being bitten—ticks have a numbing agent in their saliva—or get the hallmark bull’s-eye rash. The rest of us just feel like hell, with flulike malaise, a stiff neck, headache, joint pain and brain fog.
LYME IS TRICKY TO DIAGNOSE. Lyme doesn’t stay in the blood very long, moving into tissues and making it difficult to detect. The most advanced blood testing available screens for antibodies, which can take weeks to show up, so a negative test result does not mean you don’t have Lyme. Lyme disease is a clinical diagnosis based on medical history, symptoms and tick exposure. Seek out a Lyme Literate MD at globallymealliance.org.
TREATING LYME IS DIFFICULT. For Lyme lasting beyond the two to four weeks of treatment with Doxycycline, the most promising treatments include pulsed, long-term antibiotic combinations complemented by supplements and holistic therapies like acupuncture, yoga, infrared saunas and restricted diets. Successful treatment of chronic Lyme can take months to years. And it doesn’t come cheap.
STEER CLEAR OF TICK HABITATS. Avoid playing in leaves, gathering firewood, leaning against trees or sitting on rock walls. When you hike, walk on cleared trails instead of grassy fields. Wear long socks, long pants, long sleeves, and hats and gloves when you garden. Spray your clothing with a strong repellent like Permethrin. Check yourself, your kids and your pets, and shower immediately when coming inside.