Joyce Cate had finished playing tennis one day in early May of 2010 when she realized she was far more fatigued than normal. By the time she returned home to Westmoreland after a grocery shopping trip, she was more worn out.
“I felt like a dish rag,” she said. Within the next couple of days, she noticed her neck and shoulder were very stiff and sore. “I thought I pulled something,” she said.
It was the beginning of her six-month bout suffering from the symptoms of Lyme disease.
For the six weeks that followed that day — she remembers it was May 4 — her health steadily deteriorated.
“I’m healthy; I’ve led an athletic life,” she said. “I’m not one to easily be put down.”
Fatigue and muscle aches were her most prevalent symptoms. She also had a constant dull headache and nausea: she lost 17 pounds that month.
Six weeks later, after two trips to the emergency room at Cheshire Medical Center/Dartmouth-Hitchcock Keene for stomach issues, she asked for a blood test that would determine if she had Lyme disease. She insisted on the test at the suggestion of her friends, who told her that her symptoms sounded like those caused by Lyme. The test came back positive.
Lyme disease is caused by the bacterium Borrelia burgdorferi, spread — mostly in New England — by the bite of the deer tick. It was first identified in the U.S. in Lyme, Conn. in 1977. More than 20,000 cases of the disease are reported in the U.S. each year.
Data collected by the N.H. Department of Health and Human Services shows there were more than 1,342 cases reported in New Hampshire in 2010, 29 of those in Cheshire County — those numbers are more than double the number reported in 2006.
More than 60 percent of deer tick samples taken that same year in Cheshire County were infected with the Lyme disease-carrying bacterium.
Cate believes she wasn’t diagnosed with Lyme disease sooner because she did not have the telltale “bulls-eye” rash, a large circular rash that develops around or near the site of a tick bite within the first month in about 80 percent of Lyme disease patients. She never felt or saw a tick bite.
Although Lyme disease can affect anyone, those who spend time in wooded or grassy areas are at greater risk, because of the increased exposure to ticks.
The symptoms Cate suffered two years ago are typical of Lyme disease. Others are flu-like symptoms (chills, fever, swollen glands) and facial paralysis (Bell’s palsy).
Symptoms usually begin within a month of exposure, but onset ranges from three to 32 days.
Standard treatment for early Lyme disease (within the first six months) is a 14- to 28-day course of the antibiotic doxycycline — Cate had a 21-day dosage of the drug.
Dr. Jodie Dionne-Odom, who works in the infectious disease section at Dartmouth-Hitchcock Medical Center in Lebanon, emphasized seeing a doctor as soon as symptoms manifest or if the bulls-eye rash appears.
“If you have a tick bite or if you’ve been hiking or outdoors recently and have symptoms, don’t wait,” she said. “The treatment has the most effect when it’s early.”
If Lyme disease is left untreated for a few weeks or months, complications such as meningitis, arthritis and heart abnormalities may occur and other body systems (including the brain, digestive and respiratory systems) may be affected.
About 20 percent of patients may experience long-term symptoms after treatment.
Although this patient population does not benefit from an extra course of antibiotics, Dionne-Odom said, controversy surrounds how to treat them.
These patients suffer from post-treatment Lyme disease syndrome, often called chronic Lyme disease. Symptoms can be similar to acute Lyme disease such as fatigue and joint pain, and include neurological issues such as decreased concentration and memory disorders.
Medical authorities, including the Infectious Diseases Society of America, the American Academy of Neurology and the National Institutes of Health say there isn’t an effective treatment for chronic Lyme disease. Their consensus is that any long-term symptoms are not related to Lyme disease but to other conditions.
Dr. Daniel Cameron, who operates a primary care practice in Mt. Kisco, N.Y., disagrees. He is a member of the International Lyme and Associated Diseases Society, a group of health care professionals involved with Lyme disease since the late 1980s. The nonprofit group advocates greater acceptance of chronic Lyme disease in the medical community.
He said a few studies have shown the effectiveness of antibiotic treatment for chronic Lyme disease, but they were conducted using too small number of patients to change guidelines.
Cameron began treating patients with chronic Lyme disease in the late ’80s. In 1990, he read a report by Allen Steere, a former Yale University professor of rheumatology credited with discovering and naming Lyme disease in the ’70s.
The report, published in the New England Journal of Medicine, outlined neurological Lyme disease, with long-term symptoms including poor memory and concentration, sleep disturbance and irritability.
Cameron treats chronic Lyme disease patients with neurological issues such as depression, anxiety and attention deficit hyperactivity disorder as he would treat a patient with fatigue or joint pain — with a longer course of antibiotics.
These patients are conventionally treated with other medications that treat the symptoms and not the underlying disease, Cameron said.
Likewise, patients who suffer from chronic Lyme disease symptoms such as fatigue and muscle and joint pain might be diagnosed by their primary care physician with fibromyalgia or chronic fatigue.
“These patients are usually frustrated that they can’t get better,” Cameron said. “When these symptoms persist, they’re sent to another specialist.”
Cameron uses a holistic approach, encouraging a low-carbohydrate, low-sugar diet and exercise.
Dr. Jeffrey Greenfield, who practices osteopathic medicine at his family practice in Manchester, also prescribes a diet low in sugar and high in protein and vegetables along with immune system-boosting herbs like garlic to his chronic Lyme disease patients.
Also a member of the International Lyme and Associated Diseases Society, he treats these patients with a longer course — at least a month — of antibiotics. Often, he will treat the patient for other infections that can go along with Lyme disease, such as babesiosis. The disease is caused by a parasite, babesia, found in one in three ticks in New Hampshire.
“It mimics the symptoms of malaria,” Greenfield said.
It doesn’t respond to doxycycline because it’s not a bacterium — instead, he treats it with anti-malarial drugs.
Greenfield said treating chronic Lyme disease is a hard pill to swallow for the majority of the medical community, which is reluctant to prescribe antibiotics long-term.
“These are not benign medications,” he said. “They can cause significant side effects,” including gastrointestinal issues, yeast infections and liver dysfunction.
Chronic Lyme disease sufferers need to weigh the pros and cons of taking antibiotics long-term. Cameron said about 80 percent of his patients with chronic Lyme disease improve after treatment.
Those who tests positive once for Lyme disease and receive treatment are not immune to becoming infected with it again. These patients can receive a prophylactic dose of doxycycline within the first 72 hours of a tick bite to prevent infection from a new bacteria.
“It’s not a treatment,” Dionne-Odom said. “It’s to keep the disease from setting in again.”
Cate took a dose of doxycycline last week after she found a tick crawling inside her pant leg after working in her garden.
The Centers for Disease Control and Prevention offer tips for preventing a tick bite while outdoors, including walking in the center of a hiking trail, tucking pants into socks and shirts into pants, using insect repellent containing 20 percent DEET, bathing as soon as possible after coming indoors, keeping grass short at home, removing leaf litter and creating a wood chip or gravel barrier where the lawn meets the woods.
People should also examine their hiking or camping gear and pets for ticks, which can attach to a person later. Any remaining ticks found on clothing can be killed in a clothes dryer on high heat.
If a tick is attached to your skin for less than 24 hours, your chance of getting Lyme disease is extremely small. But to remove a tick, you should do so with a tweezer as close to the skin as possible to the attachment site, being careful not to squeeze or puncture the body of the tick.
The attachment site should be disinfected with rubbing alcohol or an antibacterial wash and hands should be washed with hot water and soap.
Of course, people should be alert for any signs or symptoms of illness.
Dionne-Odom’s most important tip is to check the body for ticks once indoors after each time spent outside. That includes under the arms, in and around ears, inside the belly button, behind the knees, between the legs, around the waist and in the hair.
Cate is playing tennis again and feels back to her normal self, but she will never forget what it was like suffering from the symptoms of undiagnosed Lyme disease.
“It was six horrible, horrible weeks,” she said.
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