Maine has the nation’s third highest rate of Lyme disease, but the illness remains misunderstood and is often misdiagnosed.
By Edgar Allen Beem
In 2012, Maine recorded a record 1,111 cases of Lyme disease, a painful, debilitating illness caused by bacteria borne by deer ticks. That’s up from just 200 in 2005. And since it is estimated that only one in six of cases is reported, as many as 6,000 people may have contracted Lyme disease in Maine last year.
At this point, Lyme disease is considered endemic to Maine, meaning well established and widespread. As if blackflies, no-see-ums, and mosquitoes weren’t enough, now anyone walking through the woods, brush, long grass, or even backyards has to contend with deer ticks. So tick checks (checking the bodies of loved ones for ticks) should be a routine part of Maine outdoor life, particularly along the coast, where deer ticks are most prevalent.
“The hottest places are coastal York and Cumberland counties and the midcoast region,” reports Dr. Peter Rand, who studies ticks and Lyme disease at the Maine Medical Center Research Institute’s Vector-borne Disease Laboratory in South Portland. “Camden-Rockport has upwards of two hundred cases per one hundred thousand.”
In terms of sheer numbers, there were 266 cases reported in Cumberland County and 212 in York County last year, but the infection rate in Knox County led the state with 269 cases per 100,000. The statewide Lyme disease case rate was 83 per 100,000. There was only one case in Aroostook County, primarily because there are so few deer in northern Maine.
Federal Centers for Disease Control 2002-2011 figures show Maine third in the nation in terms of Lyme disease rate, behind only Delaware and New Hampshire.
Named for Lyme, Connecticut, where the first cases were diagnosed in 1975, Lyme disease spread up the New England coast, carried in part by ticks attached to birds along the Atlantic Flyway, and was first identified in Maine in 1987. Since then it has spread along the entire Maine coast and inland up the river valleys.
The rise in Lyme disease, says Dr. Robert Smith, principal investigator with MMCRI’s Vector-borne Disease Laboratory, can be attributed to “more people living in habitat shared with deer.” Where you have deer, you have deer ticks. Where you have deer ticks, you have Lyme disease.
The good news is that Lyme disease is preventable and treatable; the bad news is that it is also greatly misunderstood, frequently misdiagnosed, and highly controversial.
Deer tick nymphs are only about the size of a poppy seed, so Mainers in the know regularly inspect their own bodies and those of their loved ones both visually and manually.
“A tick check is a must,” says Bob Maurais, co-owner of Mainely Ticks, a tick management service in Windham and Wells. “But tick checks have to be done the right way. Employ the sensitivity of your fingertips. You’re going to feel things you aren’t going to see.”
Maurais, Maine’s Teacher of the Year in 1996 when he was teaching middle school in Yarmouth, started Mainely Ticks in 2004 after he discovered a tiny tick behind the ear of his three-year-old granddaughter, Hannah. His granddaughter did not contract Lyme disease, but Maurais has devoted himself to Lyme prevention ever since. His wife, Barb, is the treasurer of MaineLyme, a nonprofit dedicated to fighting the disease. Mainely Ticks’ primary business is spraying properties with pesticide to kill ticks. “Seventy-five percent of Lyme disease cases,” says Maurais, “are contracted within one hundred feet of home.”
The conventional wisdom is that time is on your side when it comes to discovering and removing ticks, because deer ticks are thought to wander around the body for up to twenty-four hours before selecting a place to attach, and then you have thirty-six hours or so before becoming infected.
“When the tick takes in your blood, it has spirochetes [the bacterial group containing Borrelia burgdorferi, which causes Lyme disease] in its gut,” explains Dr. Peter Rand. “When your blood hits the tick’s stomach, it causes the bacteria to reproduce. The bacteria eventually go through the gut wall into the tick’s saliva, but it takes thirty-six hours to get to the saliva gland.”
But Bob Maurais warns that most people have no idea how long a tick has been attached to them. “The vast majority of people who contract Lyme disease do not remember being bitten by a tick,” Maurais says.
If you do find an attached tick, the recommended method for removing it is to use tweezers or a specially designed tick spoon to pull it off with slow, steady pressure.
There are thirteen species of ticks in Maine, but only deer ticks (Ixodes scapularis) carry the Borrelia burgdorferi bacteria. Not all deer ticks are carriers. The estimates range from 50 to 80 percent depending on location. And the bacteria are not naturally occurring in them. Deer ticks pick it up from field mice during their two-year life cycle.
Female ticks lay thousands of eggs in leaf litter in the spring. The eggs hatch into six-legged larvae in the summer. The larvae attach themselves to field mice and other small mammals, which is where they pick up Borrelia burgdorferi. Once the larvae have fed, they fall off and become inactive until they change into eight-legged nymphs the following spring. It is most often the tiny nymphal ticks, which can sometimes be seen in the summer standing by the thousands on their hind legs on blades of grass waiting for a passing host, that bite and infect humans. The nymphs molt into adults in the fall. It is then that they seek out the deer from which they take their name. Adult ticks mate on deer in the fall and spring and lay eggs on the ground, completing the cycle.
The Lyme bacteria do not make the mice, tick, or deer sick, but they are potentially devastating to humans, dogs, cats, and horses. The bacteria are not toxic; rather, they contain proteins that trigger immune responses, the most common being a rash, swelling of the joints, flu-like symptoms, and fatigue. If untreated, Lyme disease can lead to a host of more serious neurological and heart problems.
The standard diagnosis and treatment protocol is to administer a blood test to determine if Lyme antibodies, which take four to six weeks after infection to develop, are present and, if so, to then prescribe a two- to three-week course of the antibiotic Doxycycline.
Get bit. Get A rash. Get treated. Get well. Pretty simple. But try telling that to Hannah Welling.
“Traditional symptoms do not apply all the time,” insists Welling, thirty-two, a professional photographer and mother of two young children. She tells a tale of illness, frustration, and misdiagnosis that is all too familiar among long-suffering Lyme disease patients.
The only tick Welling, of Brunswick, recalls encountering was the one embedded on her back in 2007. So when she began suffering severe vertigo in 2010, she did not suspect Lyme. Being pregnant, she suspected a hormonal imbalance. The vertigo was soon accompanied by extreme fatigue and “brain mush” that left her forgetful and unfocused.
Over the course of the next two years, Welling was seen by thirteen different doctors who diagnosed everything from an inner ear virus to depression and multiple sclerosis. It was not until she consulted a naturopathic doctor in Topsham that anyone thought to ask, “Have you been tested for Lyme?”
The blood test for Lyme was inconclusive, says Welling, but it did show that she had been exposed. Five months of herbal treatments followed by six weeks of four different antibiotics, however, put Welling back on the road to recovery. “Why is it taking a year to get diagnosed?” Welling asks. “In my case, it took two years.”
Dr. Robert Smith thinks he knows why Lyme disease sometimes goes undetected. “The test was not done,” Smith says. “The test was done too early and the patient was not re-tested. Or they don’t have Lyme.”
And here’s where Lyme disease starts to get muddy. Almost everything about the diagnosis and treatment of Lyme disease is a matter of contention and dispute in what has been called the “Lyme War,” pitting the mainstream medical community against patients and physicians with an alternative view of the disease.
“The public perception of the seriousness and treatability of Lyme disease is very different from that of the informed medical community,” says Smith, who has treated hundreds of Lyme patients over the years. “The public view of this disease is that it is very difficult to treat and can remain living in their system for a very long time. The opposite is true.”
One area of disagreement is the unmistakable bull’s eye rash that is supposed to be the calling card of Lyme disease. “You read that most people have a rash,” says Hannah Welling, “but no one I know had a rash.”
“When looking carefully, you find a rash 90 percent of the time,” Smith says. “Only 10 percent of those who develop positive antibodies have no rash. But there are people who have a rash where they don’t see it.”
According to the Maine Center for Disease Control, only 51 percent of the 1,111 cases confirmed in Maine in 2012 reported a rash. And the Lyme rash is more apt to be a solid, spreading red rash than the distinctive bull’s eye rash commonly associated with Lyme.
Then there is the matter of unreliable blood tests. A 1993 study at the New England Medical Center in Boston of 788 patients referred to its clinic over a four-and-a-half-year period for Lyme disease determined that 452 patients did not have Lyme disease at all. Of those who did not have Lyme, 45 percent had had a positive blood test at another lab, but they tested negative at the medical center.
At the heart of the Lyme War are the Lyme disease guidelines issued by the Infectious Diseases Society of America (IDSA) in 2006. Advocacy groups such as the International Lyme and Associated Diseases Society (ILADS) have challenged the IDSA diagnosis and treatment guidelines as too narrow, primarily because they do not recognize chronic Lyme disease or post-Lyme syndrome. As a result, insurance companies often refuse to pay for long-term antibiotic treatment because it is deemed ineffective and dangerous by the IDSA.
In 2008, Connecticut Attorney General Richard Blumenthal, now the senior U.S. Senator from Connecticut, launched an anti-trust investigation of the IDSA guidelines panel alleging unspecified conflicts of interest, dismissal of alternative therapies, and failure to acknowledge the existence of chronic Lyme disease.
Blumenthal dropped the investigation when the IDSA agreed to submit the Lyme disease guidelines to an eight-member review panel selected by an impartial ombudsman. In 2010, the panel unanimously “determined that no changes or revisions of the 2006 Lyme disease guidelines are necessary at this time.”
The IDSA found that chronic Lyme disease and post-Lyme syndrome lacked clear definition and biological evidence. “When you treat people with clear-cut Lyme disease, they get markedly better in the standard period of time,” Dr. Smith says, “but Lyme disease has become an umbrella for a variety of syndromes such as chronic fatigue syndrome and fibromyalgia.”
Dr. Beatrice Szantyr, of Lincoln, a member of the Maine Vector-borne Disease Work Group and ILADS and the medical advisor to MaineLyme, disagrees. “There are people for whom these guidelines are insufficient,” she says. “They get treated, they do not recover, they languish, then they’re told they have something else. I’ve told Rob [Smith] that he makes a good case for the IDSA guidelines, but my own experience tells me they are not sufficient.”
Szantyr believes the IDSA diagnosis guidelines rely too heavily on rashes that not everyone gets and blood tests that are often inaccurate, and that the treatment guidelines ignore the reality of long-term Lyme.
Dr. Stephen Sears, the state epidemiologist with the Maine CDC, endorses the IDSA view of Lyme disease. “We rely on the federal CDC to provide information, and they do,” Sears says. “The IDSA guidelines are the best information for treating people with Lyme disease.”
Dr. Sears believes that what some see as chronic, long-term Lyme disease is actually the damage left in the wake of the disease, not the disease itself. “The bacteria is treated, but the damage does not go away,” he explains. “Treating people with extended antibiotics is not effective and has side effects.”
“That’s an interesting perspective,” Szantyr responds. “Show me the data.”
Advocates of the ILADS approach won a victory in June when the Maine State Legislature passed a bill, LD 597, requiring the Maine Center for Disease Control & Prevention to include on its Web site information on, among other things, alternatives for treatment of Lyme disease.
One thing everyone involved with Lyme disease seems to agree upon is the need for public education and prevention. Back in 1996, the residents of Monhegan took Maine’s most drastic action to prevent Lyme on their island, where 13 percent of the year-round population had tested positive for the disease. Between 1996 and 1999, hunters were authorized to kill every single deer on Monhegan.
“They were able to eliminate Lyme disease by getting rid of all the deer,” says Dr. Stephen Sears. “That’s not an effective solution for other places.”
Residents of Islesboro voted in 2011 to kill four hundred of the estimated five hundred deer on that island in order to stem the rising number of Lyme cases there.
Another attempt to stop the spread of Lyme disease was the development of a Lyme vaccine, which was approved by the Food & Drug Administration in 1998. Two hundred Maine residents took part in the LYMErix trials, which showed the vaccine to be almost 80 percent effective, but GlaxoSmithKline withdrew LYMErix from the market in 2002 because it was a commercial failure. The reasons cited were that Lyme is not a fatal disease, it is only endemic to a limited geographic region, the vaccine required two boosters, and some patients complained that it made them sick.
“I would like to see an anti-tick vaccine,” says Dr. Robert Smith. “It would be better to have a vaccine that didn’t allow ticks to feed on you in the first place.”
In the meantime, scientists at the MMCRI Vector-borne Disease Laboratory continue to study deer ticks and Lyme disease, and public health officials at the Maine CDC continue to get the word out about the prevalence and prevention of Lyme disease in Maine. “Public awareness is high, but actual change of behavior is relatively low,” Smith says. “People need to do tick checks and use repellants.”
No one needs to remind Hannah Welling of that.
“Every night at bath time I do a tick check with my children,” she says. “In the last two months, I have found three embedded in me.”
Edgar Allen Beem is a freelance writer from Yarmouth who has been contributing to Down East since 1983.