Lyme Disease On the Rise in Vermont

June 13, 2013  
Filed under Health & Wellness

Sufferers share their stories, urge vigilance

By Phyl Newbeck

Lyme disease is heading north. The debilitating condition caused by bites from deer ticks got its name from the Connecticut town where it was first identified. For years, Vermonters thought they didn’t have to worry about this “southern New England” disease, but according to the Vermont Department of Health, the number of cases in the Green Mountain State has increased steadily since 2005. In 2011, the most recent year for which numbers exist, there were 500 people who had likely contracted the disease in Vermont.

Deer ticks live in wooded or brushy areas. They burrow into the skin, often on warmer parts of the human anatomy and can be removed with tweezers. Not all ticks carry Lyme disease, but if a bullseye-shaped rash appears after a bite, there’s a good chance the tick was a carrier.

There is some controversy regarding the diagnosis and treatment of the disease and many believe they have been “failed” by the medical profession.

Susan Chinnock of Underhill leads the Lyme Support Group of Northern Vermont, which has roughly 120 members and meets every six weeks. She said her daughter, Alice Levitt, developed the disease in the 1990s and was unable to walk, talk or sit up without assistance. Chinnock said it took 22 doctors and six years before the condition was properly diagnosed. After that, Levitt went through 3½ years of intravenous antibiotics and another 3 ½ years of oral antibiotics, followed by a regimen of intravenous internal globulin treatment. After losing what Chinnock estimates to be eight years of her life, Levitt is finally healthy.

Chinnock believes the Vermont Department of Health’s estimation of the number of cases in Vermont is vastly understated. She worries that people think Lyme disease is a seasonal disorder, noting that ticks are only dormant in the winter, not dead, and can be roused from their stupor if brought into a house on fireplace logs or a Christmas tree. Chinnock said Lyme disease mimics the symptoms of other conditions such as chronic fatigue syndrome, multiple sclerosis, ALS and fibromyalgia because it affects virtually all body systems. She said the telltale bullseye rash is quite rare — only 16 percent of the people in her group saw a rash and many had no idea they had been bitten. Chinnock warns those who know they have been bitten to immediately seek medical attention, but she believes testing is highly inaccurate and says many sufferers are sent to the psychiatric ward instead of the infectious disease ward.

Jackson Whelan of Pittsford considers himself one of the lucky ones. He was able to undergo a year’s worth of oral antibiotic treatment for Lyme disease from a Brandon-based doctor. His wife was not so lucky. According to Whelan, she was dropped as a patient in the middle of her treatment when the practice decided to stop seeing “consultive” patients. Although her doctor has since joined another practice, he has not contacted the couple to resume treatment. “I wouldn’t wish this disease on my worst enemy,” said Whelan. “It’s so preventable and so treatable if we don’t deny its existence. There is a climate of fear. Doctors are afraid to risk their license. Patients are stuck in the middle. If you catch Lyme early, it’s easier to treat. It’s appalling how undereducated people are about this.”

Melinda Moulton of Huntington remembers finding a little black dot on her stomach and pulling it out. The area around the spot turned slightly red and eventually grew to the size of a quarter and then a fifty-cent piece. When Moulton visited a doctor, she was told they were unsure whether or not it was Lyme disease, but she wanted to err on the side of caution. The area around the spot was itchy and had a leathery feel so upon Moulton’s insistence the doctor prescribed a 25-day regimen of antibiotics. The spot continued to grow until Moulton’s entire side was red and she thought she could discern a bullseye rash. In search of a second opinion, she went to a local hospital where she said a doctor told her it looked like Lyme disease and it was good she was on antibiotics. No tests were done at either location.

Moulton continued taking antibiotics, but the rash seemed to change size and move slightly so she visited a dermatologist who, again, ordered no tests but said it was possible she had Lyme disease and gave her a powerful steroid cream which eliminated the rash in one day. Moulton worries about what would have happened if she hadn’t caught the problem right away. “They didn’t know,” she said of the physicians she visited. “There was no determination; just hemming and hawing. It didn’t make me feel very confident.”

Vermont Commissioner of Health Dr. Harry Chen agrees that Lyme disease is a growing problem in Vermont. When he moved to the state 25 years ago as an emergency physician, Lyme had not travelled this far north, but now it is a regular occurrence. Chen said the two most important factors in Lyme disease are prevention and early diagnosis. He recommends long sleeves, long pants, insect repellent and body checks for anyone spending time outdoors. Chen also noted that patients who find the bullseye rash and immediately see their doctors can be treated successfully with antibiotics. He holds educational sessions with Vermont physicians every year to help them diagnose and treat the disease.

Chen agreed that if not recognized and treated, Lyme disease can lead to chronic symptoms and noted that the condition can be misdiagnosed. However, he believes many patients who continue to display symptoms after treatment with antibiotics are showing the effect of previous infections.

Chen said there is some controversy about the efficacy of long-term antibiotic therapy. Most physicians will treat Lyme disease with antibiotics from a minimum of 10 days to an absolute maximum of two months. Chen said those are the guidelines used by the Infectious Diseases Society of America (IDSA), the Centers for Disease Control, the National Institute of Health and most European nations. Although physicians need to be flexible in their practice, Chen said the literature does not support the need for longer-term antibiotic treatment.

Chen said when patients display the telltale rash there is no need for testing, but for those who don’t, there is a two-tiered blood test. The first test will almost always have a positive result so the second test is needed to determine whether that positive comes from Lyme disease or something else. He noted that some doctors will call for a higher number of tests which will lead to a greater likelihood of false positives. “Medicine changes all the time,” said Chen “but to make changes we need good evidence and real science.”

Both Chinnock and Moulton believe veterinarians do a better job of diagnosing and treating Lyme disease than human physicians. Not only are dogs routinely tested for the disease, but there is a vaccine created for canines while none exists for humans. “This is scary stuff,” said Moulton. “This is something the size of a poppy seed that can cause you chronic problems for the rest of your life.”

 

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