Neurologic Lyme disease cases rising on Long Island, doctors say

Seven-year-old Michael Anglum had headaches, then started vomiting. A few days later, he began seeing double and one of his eyes was closing. 

A blood test early this summer determined Michael had neurologic Lyme disease, a lesser-known form of the tick-borne illness that can affect the nervous system. Though treatable with antibiotics, it can cause muscle weakness, meningitis and partial facial paralysis, known as Bell’s palsy.

"I was shocked," said Sarah Anglum, Michael’s mother, who stays vigilant with tick checks every night and keeps her kids’ hair short so they are easier to spot. "I didn’t know this was something that could develop from a tick bite."

Michael got treatment at Stony Brook Children’s Hospital, where doctors said they are seeing an increase in Lyme disease cases this year, including neurologic Lyme disease.

"We are actually seeing more cases of central nervous system Lyme, Lyme meningitis and Bell's palsy than we have seen in the past few years," said Dr. Sharon Nachman, division chief of pediatric infectious disease at Stony Brook Children’s Hospital, who treated Michael.

Stony Brook, which runs a tick-borne disease clinic at Southampton Hospital, has seen at least 10 cases of Lyme meningitis this year, while they typically see fewer than five per summer, Nachman said. In addition, more than a dozen young patients developed Bell's palsy — one of the conditions of neurologic Lyme — after being bit by an infected tick.

Nachman and other doctors on Long Island said they have seen an upswing in tick bites this spring and summer. The increase in neurologic Lyme cases could be the result of more Lyme activity overall, she said.

"Is it climate change? Are we in the tick’s environment?" she said. "Are we better at diagnosing it? It’s probably all of the above."

Dr. Howard Balbi, director of pediatric infectious diseases at Good Samaritan University Hospital, said he has also seen higher-than-usual cases of Lyme disease early in the season, including neurological Lyme disease.

"It varies slightly from year to year," he said. "We saw cases in March and April that included more severe cases of arthritis and some with Bell’s palsy."

Dr. Lisa Visentin, of Allied Physicians Group Peconic Pediatrics in Riverhead, said her practice has "definitely seen more tick bites" this year, meaning they have to monitor these young patients for Lyme disease.

"It started a little earlier in the spring," Vistentin said, adding that tick season seems to have been extended by warmer winters.

Most neurologic Lyme disease can be treated with antibiotics, and patients can avoid more serious symptoms if diagnosed early. In some cases, however, it can take much longer for these symptoms to resolve. Lyme disease is not considered a fatal illness, but if it is not treated, people can experience health effects for months or even years, including arthritis.

Long Island, especially Suffolk County and the East End, has been a Lyme disease hot zone due to its large tick population. (Suffolk also has led the nation in other tick-borne diseases, including the meat allergy known as alpha-gal syndrome.) But tracking Lyme disease has been a challenge because so many cases go undiagnosed, experts said.

In 2022, the Centers for Disease Control and Prevention changed its reporting method in high-incidence jurisdictions, such as Long Island, making it easier to report.

That change caused a dramatic increase in reported cases in Suffolk, from 496 in 2021 to 2,668 in 2022, the most recent data available. There were 62,551 cases across the United States in 2022, the most recent year available.

Facial palsy uncommon

Lyme disease is a bacterial infection transmitted to people through the bite of an infected blacklegged tick, also known as a deer tick.

Most people associate it with its early symptoms that include a bull's-eye-shaped rash or low-grade fever. Within a few days or weeks, those can develop into more serious symptoms, such as joint pain, swelling and numbness, if the infection progresses. At that point, it can impact cranial nerves, resulting in Bell’s palsy, a condition that causes weakness or paralysis on one or both sides of the face.

Once it reaches the central nervous system, the infection also can trigger meningitis, inflammation of the membranes around the brain and spinal cord, or encephalitis, inflammation of the brain. People with meningitis and encephalitis may experience a range of symptoms including stiff neck, fever, headache and vomiting.

The CDC said that out of every 100 reported Lyme cases, nine have facial palsy; four have weakness, numbness or tingling from a pinched nerve, known as radiculopathy, and three have meningitis or encephalitis. The agency warns, however, that the counts may be an overestimate because of reporting practices.

Noting the symptoms of Lyme disease early, getting a prompt diagnosis and treating it with antibiotics are key to avoiding the later stages of infection, said Dr. Patricia Coyle, a neurologist at Stony Brook Medicine who specializes in neurologic Lyme disease.

Coyle and Dr. Steven E. Schutzer, an immunologist at Rutgers New Jersey Medical School, authored a paper published last month to help physicians better recognize the early signs of Lyme disease.

"There are doctors who have not seen Lyme disease as much as doctors in the core part of Suffolk County," Schutzer said. "But the range of where it is occurring is getting bigger."

Coyle said an unusual rash, even if it’s not a bull's-eye, should not be ignored.

"The most common feature of early Lyme disease is a rash at the tick bite site," she said. "It's typically not painful. It's typically not itching. One of the characteristics is that the rash gets bigger day by day."

Schutzer added primary care doctors should have a neurologist and cardiologist "on speed dial" so they can help evaluate neurological symptoms and abnormal heart rhythms right away.

"There are very few things, particularly during the summer, that give you bilateral facial nerve palsy," he said. "That’s a tipoff, even if you don't have the rash."

Michael Anglum is recovering from his bout with Lyme disease and no longer has double vision, which had required him to wear glasses. He’s looking forward to more summer days in the pool and a family trip to Alaska.

Nachman believes parents on Long Island are getting better at noticing the signs of possible Lyme disease and getting their kids checked out quickly. But not every case develops a rash, and infected kids who are not treated for Lyme could develop more serious symptoms in the fall.

"We worry about the kids who are waiting a bit longer," she said. "We don’t really have great data on how long it takes for them to get better if they are treated late."