When Nicole Greene’s friend plucked a tick from her head back in 2001 and flushed it away, she thought nothing of it again until six years later when her doctor told her she had Lyme disease and asked if she’d been bitten by a tick.
“I’d never heard of Lyme disease. All I could think was, ‘No, I’m not an outdoor person, there’s no way I have that,”‘ Greene wrote in her blog this week for the U.S. Department of Health and Human Services, where she is deputy director of the Office on Women’s Health.
Driving home from the medical appointment, she remembered the seemingly minor incident from years before.
“My older son used to go to a sleep-away camp and there were parent weekends. I went on a parent weekend and at the time I had long curly hair and I assume that’s when the tick attached itself to me,” Greene told CBS News.
Some time later, she was visiting the friend. “I must have felt something on my head and said, ‘What is this?’ And she called her mom who was a nurse and her mom told her to get the tweezers and get it out and flush it. It was all of two minutes,” Greene said.
“I never even saw it. I did not know about ticks, and I definitely did not know about Lyme disease.”
In the months and years after that, mysterious health issues began cropping up, becoming more serious over time. She experienced achy joints, foggy thinking, depression and shaky hands, to name a few. Despite her efforts to pinpoint a diagnosis, the reason behind the symptoms didn’t become clear until after a flu-like bout in 2007 that left her bedridden for weeks. Her doctor tested her for a slew of conditions – lupus, sickle cell disease, fibromyalgia, chronic fatigue syndrome and Lyme. The Lyme test came back positive.
Greene is one of many people who don’t notice early signs of Lyme disease, brush off the symptoms, or whose medical providers missed the symptoms, which often include fever, headache, fatigue, and a bull’s-eye skin rash called erythema migrans, considered the hallmark of the disease. It appears in about 70 to 80 percent of infected people, according to the U.S. Centers for Disease Control and Prevention, although some doctors believe many more cases lack this obvious sign.
If Lyme is caught early, it can be treated with antibiotics. But if it goes untreated, the infection can spread to the joints, the heart and the nervous system, which explains some of Greene’s symptoms. Patients may suffer with severe headaches and neck aches, heart palpitations, facial palsy, and arthritis with severe joint pain.
A tiny tick, about the size of a mark a felt-tip pen makes, transmits Lyme disease to humans — specifically, a bacterium called Borrelia burgdorferi.
“The tick is so minuscule, the majority of people don’t remember getting bitten by it,” Dr. Neil Spector told CBS News. Spector, a cancer researcher at Duke Medicine, went undiagnosed with Lyme disease himself for four years in the 1990s.
Ticks pick it up from other warm-blooded animals such as deer, mice and foxes, explained Dr. Bruce Farber, chief of infectious diseases at North Shore University Hospital and Long Island Jewish Medical Center in New Hyde Park, New York.
There are about 300,000 Lyme infections in the U.S. each year, the CDC estimates, but only about 30,000 cases are confirmed and reported.
People living in New England, the mid-Atlantic states and the upper Midwest are at the biggest risk.
“It’s endemic on Long Island, Cape Cod, Block Island, Shelter Island, and certain parts of Colorado,” Farber told CBS News, highlighting areas where ticks are known to harbor in woods and grassy areas.
Actor/songwriter Kris Kristofferson is among those who suffered from Lyme disease symptoms for years after being misdiagnosed. His wife told Rolling Stone she believes he picked up the infection from a tick in the woods in Vermont while filming the movie “Disappearances” in 2005. His neurological and memory problems were mistakenly blamed on Alzheimer’s, she said.
Mental and physical toll
Spector wrote a book about his own medical odyssey of trying to find answers to his constellation of crippling symptoms. He had moved from Boston to Miami at the time, where doctors were less familiar with Lyme disease.
“I think the problem is, one, there’s this dogma that everyone has this perfectly concentric rash that looks like the Target logo or that people should remember getting bitten by a tick. That there’s this very algorithmic set of signs and symptoms and that is actually far from the truth. Depending on which theories you believe, as many as 40 to 50 percent of people don’t have that perfect rash,” he said.
The rash may be hidden in the scalp, which might have happened in Greene’s case. Some may have something like contact dermatitis or hives, said Spector, and “dark complexioned people may not see anything at all. If you only look for rash you’re missing the boat on a lot of people.”