BALTIMORE — Antibiotics have been so effective in wiping out all traces of Lyme disease infections that doctors haven’t always believed people who said they still suffered for months or even years.
Many chafed at the idea of “chronic” Lyme disease because they believed patients no longer had it.
But the scientific community has been coalescing around the idea that something is happening — that maybe the bacterial infection caused by tick bites is morphing into or triggering a new disease in some patients. Some estimate “post-treatment Lyme disease syndrome” affects as many as 1 in 5 who contracted the infection.
Johns Hopkins researchers now plan to study the poorly understood, long-term problems in a newly formed center that could eventually provide answers and therapies to people who say they have few of either.
Lyme disease afflicts an estimated 300,000 annually, said Dr. John Aucott, a leading Lyme researcher tapped to direct the Lyme Disease Clinical Research Center, housed in the rheumatology division at Hopkins Bayview Medical Center.
“If you live anywhere from Maine to Virginia, it’s almost impossible for Lyme disease not to affect someone you know, someone in your family or yourself,” said Aucott, also a Hopkins internist and assistant professor of medicine.
He’ll lead a team investigating ways to diagnose Lyme sooner, perhaps preventing the long-term consequences, and to predict who may not recover quickly and better treat them.
Lyme disease generally leads to skin rashes and flu-like symptoms initially, and can cause joint pain and swelling, neurological problems and fatigue later. Other organs also can be impacted.
The disease was discovered in Connecticut about 40 years ago and remains heavily concentrated in the Northeast. Officials at the U.S. Centers for Disease Control and Prevention believe it’s significantly underreported, even though it is considered among the most common infectious diseases in the United States.
The Borrellia burgdorferi bacterium that causes Lyme disease is among the many bacteria and viruses transmitted through the bites of deer ticks, which find their way to humans through deer and mice carrying the tiny bloodsuckers.
Not everyone infected gets the telltale bulls-eye rash, or any rash, which helps doctors diagnose the disease. That can mean Lyme goes unrecognized and untreated for months, particularly if no one sees a tick.
Aucott said doctors in areas where Lyme is common often prescribe antibiotics if they suspect the disease because diagnostic tests usually miss infections in the first few weeks, leaving patients with worsening symptoms.
But after a course of antibiotics, some people continue to have symptoms. That’s why patients and some advocates began referring to it as chronic Lyme disease. But in patients given antibiotics, the bacteria are often no longer detectable.
When patients complain, doctors may give them more antibiotics, pain relievers or other drugs to treat symptoms. Some turn to diets and exercises.
Aucott said his new affiliation with Hopkins will bring fresh attention, and resources, to the issue.
He and others will look to determine if the infection is hiding or, as he hypothesizes, is developing into a new disorder, possibly an autoimmune one like rheumatoid arthritis. He and others will explore if there is a genetic component, an underlying condition or other bacteria or viruses involved.
Complications in sufferers can vary, and can flare and wane. Symptoms can include incapacitating fatigue, joint and musculoskeletal pain and neurological and cardiac symptoms.
Alex Mason’s disease went undiagnosed for months, and his symptoms have now lasted for 3 years. He’s president of the Lyme Disease Research Foundation, which pledged an undisclosed amount to launch the Hopkins center, and is counting on Aucott and collaborators inside and outside Hopkins to learn more about the disease.
The foundation previously established a repository at Hopkins filled with the blood and tissue of Lyme disease sufferers for researchers to study.
“It’s been a terribly debilitating experience,” Mason said. “You lose energy, you get a foggy head. You don’t always forget things, but everything moves more slowly. You have all sorts of muscle aches and pains. It’s like the flu and you feel dreadful, and then it morphs into something else.”
Deb Brown, a 51-year-old Timonium marketing and public relations professional, described the syndrome the same way. She said some mornings she wakes and knows: “It’s a Lyme day.”
She also never saw a tick or a rash. She was sick for more than a year and tested for many other diseases before an orthopedist suggested in 2000 it could be Lyme. A lab test confirmed that it was Lyme and another infection.
By then, she’d gone from being a “hockey mom” and regular exerciser to hobbling around on crutches for months. Her knees would swell with fluid and need draining. Her elbows would ache and then her jaw. Her mind would get fuzzy. She said getting a diagnosis and a course of antibiotics was initially a huge relief, but she didn’t fully recover.
“I have a new normal,” she said. “I’m guessing this is how an older person has to adapt in life.”
Brown now exercises daily and participates in running and other races as therapy, though she needs a lot more time to recover. She also uses the events to raise money for Lyme and other causes, and plans to launch a resource center and support group for those with the disease and post-treatment syndrome.
She visited Aucott after searching on the Internet for someone to treat her. Other doctors, she said, dismissed her claims that she was still suffering.
In the meantime, Lyme continues to spread north and west, according to Dr. Alan G. Barbour, a University of California, Irvine professor of medicine and microbiology. As a National Institutes of Health microbiologist decades ago, he helped grow the first spiral-shaped Lyme bacteria with Willy Burgdorfer, for whom the bacteria is named.
He recently updated his book, “Lyme Disease,” a guide that describes how Lyme makes people sick and what to do to prevent it.
He said people who live near the woods can spray once a year and keep the grass mowed to keep ticks at bay. They can cover their skin, use repellent, shower after exposure and check for deer ticks, though immature ticks’ tiny size makes them tough to spot. Communities can cull the herds of deer that are necessary for ticks to thrive.
“It’s best not to get Lyme disease to begin with,” he said in an interview. “But it can be difficult in some areas to avoid.”
Barbour said research into tests and treatments could aid not only those with Lyme and post-treatment syndrome but also those who now seem to be showing long-term consequences from Ebola and other infections.
The research may help doctors differentiate tick-borne diseases too. Lyme is the most common, but there are many other bacteria and viruses carried by ticks, including tularemia, anaplasmosis, babesiosis, ehrlichiosis and Rocky Mountain spotted fever.
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