Though not nearly as common as the flu, Lyme disease is quickly becoming one of those “everybody knows somebody” health topics.
The disease, which can become a chronic and debilitating illness if not treated quickly, was the fifth most common nationally notifiable illness in 2010, according to the Center for Disease Control (CDC). And while it is on the rise throughout the United States, 94 percent of cases occurred in just 12 of the 50 states — among them: Maryland.
In fact, from 2000-2010, the number of confirmed cases of Lyme disease in Maryland grew from 688 to almost 1,200. And last year, according to the Maryland Department of Health and Mental Hygiene, 286 cases were reported in Montgomery County alone — the highest of any Maryland county.
The quantity of area cases is no surprise to seven-year Kentlands resident Sara Yassin, who suffers from chronic Lyme disease. Some experts say there is no such thing as a chronic version of Lyme. But to Yassin, the situation is all too real.
While running her vineyard in Leesburg, Va., Yassin’s hands began to feel achy and cramped up while working. She simply chalked it up to the early stages of aging, and her doctors added that it was probably arthritis or even fibromyalgia. But soon other symptoms followed: waking up at night with vertigo, as well as a huge rash across her entire torso. Her physician then believed that she must have a fungus.
She wasn’t diagnosed until she insisted she be tested for Lyme and the results came back positive in June 2009, four years after her first symptoms appeared. Yassin believes she was probably reinfected with Lyme the previous month, which is why the symptoms suddenly intensified and multiplied.
Two-and-a-half years and $10,000 later, Yassin is in what is considered the “remission” stage of chronic Lyme disease. Remission is defined as the control and disappearance of most symptoms.
“I am 90 percent better,” she said, “but you don’t ever truly get rid of it once it’s chronic.”
Yassin said misdiagnosis of Lyme disease is not uncommon. The illness is known by many medical professionals as “the great imitator” because of its unique ability to resemble many other illnesses.
Despite Yassin’s recovery, the impact Lyme disease has had on her life has been significant. A registered nurse by trade, she doesn’t practice anymore.
“I started to not be able to take care of myself, so there was no way I could take care of other people,” she said.
She now works in the real estate business, volunteers at shelters and with rescue dogs, and helps to raise Lyme disease awareness. But having this debilitating disease has made her much more cautious in her everyday life than she was before she was diagnosed. She doesn’t hike in the woods anymore and uses homemade insect repellent when she goes outside.
Also, she said, “I only rescue the white dogs. I know that sounds silly, but I am just so paranoid of getting bitten again.”
Montgomery County is brimming with stories of long-undiagnosed cases of Lyme disease. The details of these stories are often the stuff of horror movies: swift, intense illness with little to no initial explanation.
In 2000, North Potomac resident Mimi Segal began having muscle aches. Her illness then escalated to an “agonizing shooting pain, dizziness and vomiting,” said Segal. She was diagnosed with kidney disease and thyroid disease, and also soon came down with pneumonia.
Segal underwent a series of medical tests to determine what might be the underlying cause of her downward spiral into poor health. “My [infectious disease] doctors were baffled. They didn’t know what was wrong,” she said. “At one point they said I had Lou Gehrig’s disease. At another time they told me I didn’t have anything!”
Yet she had to use a wheelchair while on vacation with her family because she now had difficulty walking and could not hold her own head up. Her illness had also paralyzed the right side of her face at this point.
Segal’s doctor received the test results and insisted she immediately fly home to be treated in a hospital. Her diagnosis was a condition called neurological Lyme disease. The treatment included six weeks on an I.V., one year of antibiotics and one year of physical therapy.
But as soon as Segal started to recover, something unimaginable happened: Her entire family became ill, one by one, with tick-borne illnesses. Three of her children were diagnosed with Rocky Mountain spotted fever, while the fourth child and her husband contracted Lyme disease.
“No one had any answers for any of us,” said Segal.
Segal’s husband was told he needed to have his gallbladder removed due to a complication from Lyme disease. When Segal came back after her husband’s surgery to pick him up, he wouldn’t wake up. He had suffered a brain bleed and fallen into a coma; fortunately, doctors were able to save him.
Before their family became ill, the Segal family was very athletic and loved the outdoors, enjoying their yard and the nearby woods. They used to watch meteor showers in the grass and often played in the grass surrounding their outdoor pool. But after they all recovered, “we didn’t go in our backyard for two years,” said Segal.
From start to finish, Segal said, the ordeal cost the family 10 years of hardship and took them from being “very wealthy to struggling” due to their medical bills.
Segal has become a very active advocate for those suffering from Lyme disease and dedicates a great deal of time to the cause. She has volunteered on Capital Hill, giving every member of Congress a copy of a book about Lyme disease and the devastation it can cause if not discovered quickly.
She has also been a staunch advocate for the Four-Poster project in Montgomery County and the greater Washington, D.C., area. This project would supply deer feeders, which would coat the fur of deer who ate from them with a small dose of a harmless chemical that would kill any ticks already on the deer.
The CDC is currently investigating a different method of eradicating the disease, which Segal believes is unnecessary because she said the Four-Poster project already works. “They said it would be at least a decade before we can lower the tick population.”
This fight, said Segal, “has been frustrating.” But she continues to work for the cause because she most wants to save teens and children from having chronic Lyme disease for the rest of their lives. “[We] need to save the young people from this. It is devastating for them, right in the blossom of their lives.”