The story of Lyme disease in Connecticut dates back to the 1970s, when a cluster of children in Lyme were diagnosed with juvenile rheumatoid arthritis, a relatively rare disease that caused swelling in the knees. Many of the children lived near wooded areas and their symptoms began in the summer months—the first clues that linked the illness to ticks. Researchers at Yale narrowed the cause down to a spirochete bacteria that lives in the belly of the deer tick. Borrelia burgdorferi—has even been found in the preserved 5,300-year-old mummy known as the Iceman.

But that isn’t when Lyme disease originated.

In the previous decade, Long Island fi shermen complained of a similar condition called Montauk knee. The genetic material for the bacteria that causes Lyme—

Each year, approximately 25,000 cases of Lyme disease are reported in the United States. The disease’s prevalence fluctuates with the population of white-tailed deer, the main carrier for the tick. But Lyme’s impressive track record would suggest that the disease is here to stay.

‘The Great Imitator’

Called “The Great Imitator,” Lyme disease can mimic other conditions such as Parkinson’s disease, Alzheimer’s, chronic fatigue syndrome, and multiple sclerosis.

“People with Lyme disease feel achy, tired, fatigued, joint pain—a lot of non-specific symptoms,” says Mark J. Mamula, Ph.D., a Lyme disease researcher at the Yale University School of Medicine.

Patients describe a slew of symptoms. Karen Amoia Milano of Staten Island, New York, reports that her son contracted Lyme around age 12.

“His only symptom was a constant dull headache,” she says.

Others report “occasional flashbacks” (Sybil Maye Nassau of Old Saybrook) or loss of motor control.

“The first time I had it, my legs gave out completely more than once,” reports Stacy McHugh of Guilford. “I also woke up in the middle of the night screaming like a maniac (I’m guessing from pain). I was eight.”

“Lyme disease gave me shakes, fever, freezing cold sensations all at once— terrible, terrible experience,” comments Ken Butterworth of Westbrook.

About 70 to 80 percent of patients with Lyme disease develop the classic bull’s eye rash.

“I was lucky—I had a bull’s eye rash, and had a doctor who was familiar with Lyme,” says Geoff Maciolek of Westbrook. “My symptoms disappeared within a week.”

Left untreated, the disease can start to affect the nervous system, resulting in abnormal heart rhythm, facial paralysis, meningitis, or even memory impairment.

“In the more dramatic manifestations, intravenous antibiotics are used,” says Janine Evans, a clinical educator at Yale University involved in Lyme vaccine trials. “You want to be more aggressive.”

Prevention

Because it’s avoidable, prevention is key with Lyme disease. Stay out of tall grass and brush, and wear light-colored clothing, including long pants and long sleeves. Be vigilant about checking for ticks, recommends Evans, especially during late spring and early summer when the nymphs are most active. Other preventative measures include spraying your yard for ticks.

“Generally that’s done in the early spring when the nymph ticks are coming out, because they’re the most aggressive,” says Evans.

Effective repellants include DEET and permethrin, which should only be applied to clothing. If you do see a tick on you, don’t panic. Only after a tick has bitten you—and stayed there for 48 hours—are you at risk of Lyme disease.

“The tick has to take in a blood meal and then after the tick feeds, it essentially spits saliva back into the host—that’s when the bacteria gets transmitted,” Mamula says.

A sustained bite does not guarantee infection, either. The rate varies with location, but in general only a small percentage of deer ticks carry the bacteria causing Lyme disease.

Finally, a single dose of doxycycline can be used as a prophylactic treatment for Lymedisease for those who’ve been bitten by a deer tick. It’s not 100-percent effective, so watch for developing symptoms.

Testing for Lyme

If you suspect you have Lyme, track down a specialist.

“Many general practitioners do not see Lyme disease very frequently. This is one area where it’s good to see a specialist,” advises Mamula.

The most common test for Lyme disease is the enzyme-linked immunosorbent assay (ELISA) test, which looks for antibodies to the bacteria that causes Lyme disease. The test can provide falsepositive results and might not reveal the disease during its early stages. The antibodies need to build up over the course of several weeks before they can be detected; several weeks after infection, the test has good sensitivity. The Western blot test is often used to confi rm a positive result of the ELISA test. A diagnosis usually takes into account related information, such as whether the individual resides in a tick-infested area or spends a lot of time outdoors. Patients who are treated promptly with a course of antibiotics usually recover rapidly and completely.

Mamula points out that the deer tick can carry other bacteria that cause similar types of diseases, such as babesiosis and anaplasmosis.

“One tick can carry more than one of these bacteria,” he says. “It’s less frequent, but it’s possible.”

Rumors—and Chronic Lyme

Perhaps no other modern disease is the source of as many rumors as Lyme disease. At the far end of the spectrum, some believe that Lyme is a man-made disease that was released out of the Plum Island Animal Disease Center off Long Island. Others theorize that Lyme disease triggers Parkinson’s disease, Alzheimer’s, or multiple sclerosis.

Many doctors would call chronic Lyme disease another rumor—but then again, many “Lymeliterate” doctors would call chronic Lyme disease a real, serious disease that requires long-term antibiotics (months or even years of treatment).

It’s a heated debate. Both sides believe— vehemently—that the other side is putting patients at risk, either by exposing them to the potentially fatal side-effects of long-term antibiotics or by refusing to treat a very real condition. Reputable doctors are found in bothcamps, and there is no dearth of patients who believe they have chronic Lyme.

Kyra Sondak of Galway, New York, experienced extreme symptoms after living with undiagnosed Lyme disease for 20 years: seizures, a swollen pituitary gland, and loss of vision and hearing. Her mental health was also affected. With Sondak dependent on long-term antibiotics, she and her partner, Lynn Cath, belong to the movement to get chronic Lyme recognized as a legitimate disease. “The controversy over a long-term antibiotics treatment has got to stop,” Cath says. “There are so many lives that are being devastated.”

The Future of Lyme Disease

A vaccine for Lyme disease has been available for dogs for more than two decades; there used to be one for humans, too. Approved by the FDA in 1998, the vaccine prevented Lyme disease about 80 percent of the time. However, a lawsuit soon after blamed the vaccine for the development of joint symptoms similar to arthritis. Enthusiasm waned, and the vaccine dropped from the market in 2002. It didn’t help that the vaccine required three injections within the first year of treatment. The Lancet Infectious Diseases in May 2013.

“You need to have high levels of the antibody in your circulation,” says Evans. “It was looking as if people would need to be boostered practically every year.”

Earlier this year, a new vaccine against Lyme disease showed promise in a clinical trial. All of the study’s 300 participants produced high levels of antibodies against the bacteria that causes Lyme.

“The novel multivalent OspA vaccine could be an effective intervention for prevention of Lyme borreliosis in Europe and the USA, and possibly worldwide,” reads the article published in

If the vaccine performs well in successive trials, perhaps Lyme disease—and the surrounding controversy—simply won’t be an issue anymore.