Nature’s Tiny Killjoy: What You Need to Know about Lyme Disease

By Ruth Heil

Ah, the warm season, a time to enjoy the outdoors. Stroll through the garden or hike in the woods; leave the trail to explore the water’s edge or poke around to find emerging wildflowers. End by resting on a log or napping in the grass. One can only hope a heaven exists as beautiful as this.

Or is it an ugly hell? On one hand, such activities contribute to a high quality of life. On the other, they risk destruction of a person’s physical and mental wellbeing. How is such horror possible? It is delivered by a grotesque creature so tiny you may never see it. The black legged tick (a.k.a. deer tick) is enemy-number-one thanks to its role in transmitting Lyme disease (LD), a disabling infection with an incidence rate reaching epidemic proportions.

Experts guess the number of Americans who fall victim to LD each year is between 30,000 and 300,000. And our region sits in a hot zone. According to Dr. Kara Mascitti, medical director of Healthcare Epidemiology and Infection Prevention at St. Luke’s University Health Network, both Lehigh and Northampton counties report 10 to 50 new cases for every 100,000 persons.

Research continues for better diagnosis, prevention, control and treatment of LD. But there is controversy in the medical community surrounding it, so patients often need perseverance to get treated.

Diagnostic failures lie at the heart of the problem. LD mimics and hides. Symptoms, which vary from person to person, present as if they are other conditions. And the Borrelia burgdorferi infection that causes the disease leaves the bloodstream to infuse itself into other parts of the body, making detection difficult. Without a confirmed infection, doctors are reluctant to administer antibiotics, and there is strident disagreement as to whether or not the bacterium persists after initial treatment.

Meanwhile, ask someone about an LD experience, and he or she will typically fit into one of two categories.

Treated and Released

After a backpacking trip, Tony felt sick, as if he had the flu. He also noticed a red rash. Tony said, “First I went to the family doctor, he looked at the rash and said, ‘put cortisone cream on it and it should go away’.” But Tony kept feeling worse and within two days he was in the emergency room. He was tested for LD with negative results.

“The doctor started getting rude to me. I think he believed I was just putting on an act, all the while I was feeling absolutely terrible. I went home with no answers.” Determined to get well, Tony made an appointment at a different family doctor. “He took one look at the rash, put me on antibiotics and did another Lyme test.” This time the test came back positive. “When I started taking the meds I immediately started feeling better.”

The ordeal lasted about two weeks and Tony is fine today.

Undiagnosed and Disabled

Jenny was 11 when her stomach problems began. In nine months she lost so much weight she went from 100 to 70 pounds. Her mother Ann said, “She was tired and lethargic and having trouble with her school work.” An LD test came back negative.

Over the years, Jenny was referred to a gastroenterologist, a psychologist and a rheumatologist. She spent time in a psychiatric unit to cure her of her “eating disorder.” She endured a grueling treatment to address her “rare neurological pain syndrome.” Ann said, “She developed sleep-disturbances, fatigue and she hurt everywhere. She became increasingly withdrawn, anxious and depressed.”

Then a stranger encouraged her to reconsider LD. The test came back positive. “I remember asking the pain specialist if she could have Lyme and he quickly blew us off, saying she didn’t present like a Lyme patient. He was totally ignorant of what the symptoms of Lyme disease are. For six years, not one of the medical experts we consulted ever suggested she could have Lyme disease.”

Jenny is now disabled and her prognosis is uncertain, but at least she has identified her enemy.

Dr. Mascitti explained, “While there are blood tests for Lyme available, these are not always 100 percent accurate, so Lyme disease remains largely a clinical diagnosis, meaning that it’s often based on your doctor recognizing classic signs or symptoms that are characteristic of infection.

“Early Lyme disease usually presents like a ‘summer-time flu’ with headache and body aches, fevers and chills, and fatigue. The bulls-eye rash is a telltale sign but unfortunately is found in only 70 to 80 percent of cases,” says Mascitti.

Everyone agrees it is simply best to keep ticks off. Having survived the harsh winter, they will be hanging around until it gets cold again in grassy and wooded areas, looking for dampness and blood.

One of the greatest myths surrounding LD is that it cannot be cured. Still, permanent damage can be done if gone untreated for too long. As with many medical conditions, being your own persistent advocate will help you increase your chances of getting proper treatment.

Moreover, as Pat Smith, president the LDA said, “Becoming educated about ticks, diseases, prevention and proper tick removal can go a long way to keeping that joy that people experience communing with nature.”