Even in 'bull's-eye' New England region for Lyme, disease often flies under radar
Mary Ann Kristiansen knew something was wrong.
After two deer-tick bites last fall, she developed rashes that flared to four inches in diameter, a signal her body was reacting to a pernicious invader.
She had headaches and vertigo. Brain fog that wouldn’t abate. But she never developed the telltale bullseye rash associated with Lyme disease.
The tick-borne illness and its signs can be “very unpredictable,” said Kristiansen, 59, who is founder and director of the Hannah Grimes Center for Entrepreneurship, a regional business resource center in Keene.
It didn’t help that her symptoms were evaluated against the backdrop of the pandemic, exacerbating her difficulties getting diagnosed.
“If I said I was tired, everyone said it was COVID. If I said I had trouble thinking, people said it was COVID. ’Have you had COVID or a COVID booster? This looks like long COVID.’ It was asked by almost every doctor,” Kristiansen, of Sullivan, said. “It’s stunning that we’re so many years into [recognizing and addressing Lyme disease], and it still seems to be controversial treatment.”
It would be nearly six months before Kristiansen got a definitive diagnosis, and her journey is a testament to how easily and often this health threat can be missed or ignored, both in diagnosis and treatment — more than 50 years after Lyme disease was first identified in New England.
That’s particularly worrisome in New Hampshire, where ticks and tick bites are common from April through November in places where people spend lots of time, including woods, fields, gardens, lawns and areas covered with fallen leaves.
“Tick encounters can take place in any area where a tick might be able to survive for some time,” said Marco Notarangelo, a disease surveillance coordinator for the public health division of the N.H. Department of Health and Human Services.
“The reality is, you can get it in your backyard,” said Sue Fortier, an Alstead resident and director of Meeting Waters YMCA in Bellows Falls. She first came down with Lyme disease after a tick bite in New Jersey 26 years ago. “You don’t have to be hiking in the woods.”
New England a hotbed for Lyme disease
Transmitted by the black-legged tick, Lyme disease is now found in 50 states and more than 80 countries, according to Global Lyme Alliance, a research organization that provides education to health care providers.
Approximately 10 to 20 percent of tick-borne infections result in distressing and potentially disabling symptoms, even with treatment, such as severe fatigue, muscle and joint pain, neurologic issues, sleep disturbances, cognitive problems, irritability and depression that can last for months or years, according to data from Columbia University Medical Center’s Cohen Center for Health and Recovery from Lyme and Tick-Borne Diseases.
The Northeast has the nation’s highest rates of Lyme disease, and New England remains an epicenter, according to data tracked since 1991 by the Centers for Disease Control and Prevention.
“We always say New England is the bullseye for Lyme,” said Jim Potter, executive vice president of the N.H. Medical Society.
Based on insurance claims, the CDC estimates that roughly 476,000 people in the U.S. are diagnosed and treated for Lyme disease each year with an annual cost of diagnosis and treatment totaling almost $1 billion, according to a study released in May by the CDC and the Yale School of Public Health.
“Lyme disease represents a substantial economic burden to individuals and U.S. society,” said Sara Niesobecki, an investigator for the Yale public health school.
Even though ticks are common and the diseases they carry can be extremely costly in treatment and suffering, Lyme and other tick-borne illnesses remain sensitive and controversial topics in the medical community, according to health authorities. The three major professional societies that educate American physicians on these diseases — the Infectious Disease Society of America (IDSA), International Lyme and Associated Diseases Society (ILADS) and Global Lyme Alliance (GLA) — have varying guidelines for diagnosing and treating patients, and conflicting positions on the importance of positive and negative test results in determining further testing and care.
A winding road to diagnosis and treatment
Kristiansen believes her symptoms should have sounded alarms right away.
By December 2021, she was experiencing symptoms that compromised how she functioned at home and work: brain fog, migraines, vertigo, crushing fatigue and an odd zip-zap sound in her head that she compared to an electrical circuit misfiring.
She stood in her kitchen, not knowing whether to wash the dishes or cook dinner — so she did neither. She moved into a new house, but couldn’t unpack. Her output plummeted in the job she’s held for 25 years. She could think and speak clearly, but it was impossible to triage personal or professional responsibilities.
“I had serious cognitive deficits,” Kristiansen said. “I had fatigue, a hard time focusing and confusion. ... If there was more than one thing to do, I was done.”
In January, tests ordered by her primary doctor at Cheshire Medical Center in Keene included an MRI brain scan and a screening for Lyme antibodies. When her results came back normal, Kristiansen said her physician assured her, “100 percent, you do not have Lyme.”
Instead, she said, her PCP and a consulting neurologist wondered if her problems might be rooted in stress. They recommended counseling.
She left with a dose of relief, but the same set of perplexing symptoms.
It would be late April before she got any answers — and then only with the help of connections that led her to Columbia University Medical Center’s Cohen Center for Health and Recovery from Lyme and Tick-Borne Diseases, a research and treatment clinic in New York City.
A full battery of tests on April 15 revealed she was infected with Borrelia miyamotoi, a cousin of Borrelia burgdorferi, the spiral-shaped bacteria that causes Lyme disease. B. miyamotoi, first documented in Japan in 1995, is now found in roughly 25 percent of Lyme cases, according to clinic reports. Kristiansen’s test in New Hampshire looked only for B. burgdorferi, and did not screen for other pathogens that are transmitted by black-legged ticks.
B. miyamotoi causes aches and fevers. But it also attacks collagen and myelin, the protective coating on nerves, and undermines the connections between nerve cells, including messaging from the brain.
“The tick-borne illness lab found it the first time around,” Kristiansen said. “We live in tick-infested New Hampshire, and that wasn’t something they even test for.” If she hadn’t made the trip to New York, “I think I would still be crashing and burning.”
Tick-borne illness numbers hard to track
More than 200 cases of Lyme disease are diagnosed each day in children around the world, and the number of diagnosed cases of tick-borne diseases including Lyme, babesiosis, ehrlichia, bartonella, anaplasmosis, Borrelia miyamotoi and Powassan virus has more than doubled in the past 13 years, according to the Global Lyme Alliance.
In New Hampshire and elsewhere, the actual number of tick-borne disease cases is impossible to estimate since many fly beneath the radar, unidentified by the patient or the medical providers, mistaken for other ailments and missed by tests limited to specific time windows.
Each year, the state health department tallies Lyme cases reported for the previous year, but the pandemic disrupted the count for two years, when medical visits and testing trailed off.
In 2019, based on reported cases, towns in Hillsborough, Rockingham, Carroll and Merrimack counties had the state’s highest rates of Lyme disease (200 or more cases per 100,000 people) along with Winchester in Cheshire County; Plainfield, Cornish, Newport and Sunapee in Sullivan County; Hanover and Lyme in Grafton County; and New Hampton and Barnstead in Belknap County.
This doesn’t mean these places are hotbeds for tick-borne diseases or that other towns are safe. The count simply reflects cases that are known and reported.
Across the country, public health surveillance of Lyme disease can differ by state and sometimes by municipality. Reporting requirements and compliance vary.
“Providing consistent reporting methods for Lyme disease is a goal of New Hampshire and many other high-incident states,” said Abigail Mathewson, the state public health veterinarian and a public health authority for the state health department. As of this past January, New Hampshire and other high-incidence states are working toward improving continuity and reporting by using only laboratory results to classify Lyme cases, instead of relying on provider reports, she said.
Whether a patient gets tested for Lyme disease remains the decision of the individual care provider, with guidelines from the CDC and the Infectious Disease Society of America.
“Getting the test done is the easy part,” said Dr. Aalok Khole, a physician and infectious disease specialist at Cheshire Medical Center. “What is difficult is deciding which patient to test and then analyzing the results.”
“We recommend strongly considering a patient’s probability of having the illness and then deciding whether to test,” Khole said by email.
That means estimating likelihood based on risk factors, how common an illness is in the region, other abnormal lab results, all reported symptoms and how long they’ve been going on.
A medical maze before answers
Alan Burbank of Nashua, an OSHA inspector for the U.S. Department of Labor, was bitten by a tick in 2008 in western Massachusetts — an event that sparked a long battle with illness.
Burbank said he woke up one morning unable to move his arms or legs. For five years he waded through a maze of neurologists, a rheumatologist, a urologist, a sleep doctor and Alzheimer’s disease specialists before he was diagnosed with Lyme.
“I went to 17 doctors on the mainstream medical side, and none of them had any idea what it was. The loss of brain function was the biggest thing. My balance was off. So was my short-term memory. Data and conversations wouldn’t register in my head. I was completely feeling out of sorts, not knowing what day or month it was,” he said.
Burbank spent two years chronicling his experiences, which he is considering publishing as a book, “Lyme Free or Die,” to serve as a wakeup call and help patients.
“A person can’t really just live with Lyme disease,” he said. “It’s very debilitating. It will ruin relationships. It will ruin careers. By the time I took that first antibiotic in late 2013, it was over five years that I was walking around with Lyme disease and six co-infections.” He said he was treated with antibiotics for 28 months, and now consults a natural practitioner in Connecticut, which he said has eased his symptoms.
Part of the challenge in diagnosing Lyme disease is that the shifting and cyclical symptoms of Lyme and other tick-borne illnesses can mimic or overlap other conditions, including the flu, mononucleosis, chronic fatigue, fibromyalgia, lupus, chronic arthritis and now, long COVID.
Complicating diagnosis is the fact that existing blood tests for Lyme disease are useless unless given at least two weeks after a bite, the time it takes for most humans to develop antibodies, according to clinicians and test manufacturers.
Many patients head to urgent care centers as soon as they’re bitten or develop a worrisome skin reaction, before testing can be definitive or valuable, according to providers at ClearChoiceMD Urgent Care in Tilton.
Insufficient tests, misleading results
Nationwide and in New Hampshire, most care providers follow testing protocols that are nearly universal across the country, guided by the Infectious Disease Society of America.
The first test typically used, ELISA, detects the presence of Lyme antibodies. A follow-up, the Western blot, screens for an initial response plus a longer-term infection, and is used to confirm a positive ELISA result.
Both are time sensitive, and tests for antibodies do not always detect them because the body’s immune response builds over time. Antibody count eventually wanes, unless the body is re-infected, said Dr. Amy Offutt, president-elect of the International Lyme and Associated Disease Society, and an integrative medicine physician in Texas.
There are other limitations to the widely used tests.
According to the Global Lyme Alliance and ILADS, ELISA has been found to produce false negative results about 50 percent of the time. In contrast, the Western blot test is considered 80 percent accurate, and one of the most reliable.
But the GLA reports that many doctors don’t use the Western blot unless ELISA is positive, thus skipping an important diagnostic tool.
In 2018, in its Journal of Infectious Diseases, the IDSA stated, “reliable direct detection methods for active B. burgdorferi have been lacking in the past but are needed and appear achievable.”
According to a 2020 article in the Connecticut Mirror, there are more than 100 species of Borrelia in the U.S. (not all cause illness in humans), and commonly used tests miss most of them, focusing instead on a single strain.
Offutt said the ELISA test was originally made for epidemiological surveillance to assess disease prevalence, not for diagnosis that determines medical treatment.
“We miss a lot that could save people from the consequences of long-term Lyme,” she said.
There are more definitive and comprehensive tests available, but they’re not widely used because they are expensive and seldom covered by health insurance, she said.
IGeneX, a lab based in Milpitas, Calif., offers broad-based screening designed to detect tick-borne disease pathogens found in the U.S. and Europe, in addition to those that cause Lyme. Its tests are considered 95 to 100 percent accurate, according to a laboratory representative, and are used by Lyme-literate doctors, particularly those in the natural health community.
An individual IGeneX test for Lyme or a co-infection can run $125 to $265, and a panel of tests that includes Lyme, its variants, co-infections and other tick-borne diseases (including tick-borne recurring fever, babesia, bartonella, ehrlichia, and anaplasmosis) can cost just under $3,000, according to prices listed on its website.
A 15-minute rapid test for Lyme was recently developed by Quidel, a laboratory in San Diego, and is being distributed to ClearChoiceMD Urgent Care centers in New Hampshire and Vermont, with hopes that more providers will follow, according to Quidel’s marketing team.
Its primary benefit lies in furnishing test results while patients wait. Like all Lyme disease tests for antibodies, it begins to be valid two weeks after a bite from an infected tick.
So far, no test has been able to easily or definitively diagnose chronic Lyme disease — a condition that ebbs and flows and lasts. After Lyme bacteria have left the bloodstream and settled in body tissues and antibodies wane, it becomes much more challenging to detect, according to Offutt.
ILADS encourages diagnoses based on the likelihood of exposure, patient history and the landscape of symptoms.
More sensitive testing that is both reliable and affordable would help catch more positive cases, said Offutt, but the key to reducing suffering is treating right away.
Ultimately, “Lyme disease is a clinical diagnosis, not a blood test diagnosis,” she said. Treatment “is risk-benefit and doctor-decided.”
Sue Fortier, the YMCA director in Bellows Falls, was infected twice by ticks carrying Lyme disease. She searched years for a diagnosis.
“There needs to be better testing,” she said. “It baffles me that they could come up with tests so quickly for COVID, and we’re still struggling with tests for Lyme. A lot of information now says to treat based on an assumption of Lyme. Does anyone really know how long a tick has to be attached in order to treat for Lyme?”
Fortier, who is also a day camp director, experienced symptoms ranging from joint pain, brain fog and headaches to vision disturbances, noise sensitivity and hearing loss in one ear, which continues today.
“It affected every activity of my life. It made my whole body hurt. I got progressively worse with neurological issues. Lyme disease is not black and white. It presents differently in everybody,” she said. “I know people who have gotten it who will never go in the woods again.”
According to tick-collection labs in Massachusetts and Salisbury, N.H., 40 to 50 percent of black-legged or deer ticks are infected with Lyme disease.
But, getting bitten doesn’t always provoke an infection, said Khole. That can depend on how long a tick is attached. Medical opinions vary, and include 15 minutes to transmit Powassan virus, which is rare but can be deadly, and 24 hours or more to transmit Lyme.
Based on trends tracked by the CDC and GLA, children ages 3 to 14 and adults 50 and older appear to be at greatest risk for Lyme disease, because they tend to spend more leisure time outdoors. But anyone whose work or recreation occurs outside is vulnerable.
Treating likely infections sooner
When it comes to defeating Lyme, Offutt said, it’s best to act quickly before symptoms become chronic.
“It’s important to be proactive on prevention with early identification and intervention,” said Potter at the N.H. Medical Society. The most recent 2020 guidelines to doctors from the Infectious Disease Society of America are “a shift. They push for earlier intervention and are not as heavily reliant on tests. Physicians are given more latitude.”
But, understanding and awareness are not yet universal.
“There’s still a lot of education we need to do to allow primary care providers to treat sooner if someone is symptomatic,” Potter said. “You have the best results when you treat early. It’s taking a more proactive role if Lyme is suspected, rather than total reliance on tests.”
He said the N.H. Medical Society plans to design and soon offer continuing education on Lyme and tick-borne disease for hospital medical staff and private practice groups.
More research is needed, according to the CDC and Lyme authorities.
“There are millions of people walking around with tick-borne illness who don’t know it,” said Nancy Fox, president of the Maryland-based Lyme Education and Awareness Foundation, which makes presentations on prevention. “They just think they’re tired and their joints ache because they’re old. The vast majority of the population doesn’t know it’s as prevalent as it is.”
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