In a small number but growing number of cases, people in the U.S. have suffered severe bacterial infections, bone damage or a life-threatening condition called septic shock — all because of treatments they received for a condition called “chronic Lyme disease.”
But there is no test for “chronic Lyme disease,” and no treatments have been proven to be effective in treating the illness, according to a new report on some of these cases. In fact, experts in treating infectious diseases don’t support using the term “chronic Lyme,” Dr. Christina Nelson, a medical epidemiologist at the Centers for Disease Control and Prevention (CDC) and a co-author of that new report, wrote in an email to Live Science.
Patients may be given a diagnosis of chronic Lyme disease by health care providers at complementary and alternative medicine clinics, after seeing conventional medical doctors who have not been able to treat their symptoms, the report said. Fatigue, pain and neurological problems are all symptoms reported by people who have gotten a diagnosis of chronic Lyme.
The health care providers who diagnose these patients typically treat them with prolonged courses of antibiotics, lasting months or even years, the report said. That happens even though at least five well-done studies have shown that such courses of antibiotics do not help people who have this diagnosis, according to the report. Moreover, taking antibiotics for that long can result in serious harm, including death.
“Incorrect diagnosis of Lyme disease and treatment with long-term antibiotics can have devastating effects,” Nelson said. People who have been diagnosed with or treated for chronic Lyme disease should consider getting a second opinion to be evaluated for other conditions, she said.
Lyme disease vs. “chronic Lyme disease”
Lyme disease is a bacterial infection that is spread by tick bites. About 30,000 cases in the U.S. are reported to the CDC yearly, the agency says. The test for the disease is a blood test that looks for antibodies to the Borrelia burgdorferi bacteria that cause the infection.
But health care providers — some of whom label themselves as “Lyme literate,” according to the report — may diagnose people with chronic Lyme based solely on the provider’s clinical judgment. The patients may not have any positive test for B. burgdorferi infection, nor any of the typical signs of Lyme infection.
“Chronic Lyme is very controversial,” said Dr. Amesh Adalja, an infectious disease physician and a senior associate at the Johns Hopkins Center for Health Security in Baltimore. The term “chronic” implies that the bacteria that cause Lyme disease may persist in these patients’ bodies after the individuals have been treated for the disease, “but that’s not the case,” and there’s no evidence that the bacteria remain in the body, said Adalja, who was not involved in the new report.
There are indeed people with Lyme disease who experience lingering symptoms after completing the standard course of antibiotics used to treat the condition; these patients are said to have a condition called post-treatment Lyme disease syndrome. But people often use that term interchangeably with “chronic Lyme,” and that’s not helpful, Adalja said. There is no evidence that people with post-treatment Lyme disease syndrome have bacteria lingering in their systems, and although the cause of this condition remains a mystery, some experts think the condition may be due to a reaction of the immune system.
Chronic Lyme is also often used to describe symptoms in people who have no evidence of a current or past infection with Lyme disease, Nelson said.
Taking antibiotics for a long time is dangerous, Adalja said. Such antibiotics may be given intravenously, and the catheters that are used to deliver the drugs into the bloodstream can becomes sites of bacterial infection.
Severe infections, damaged bones
In the new report, the researchers presented details from five cases that they said illustrate what can happen to patients diagnosed with chronic Lyme. The cases came from reports that the CDC receives periodically, from state health departments and doctors who have treated patients with serious bacterial infections that the individuals got from treatments for chronic Lyme, Nelson said. Most of these patients likely didn’t have Lyme disease.
“We have heard of many more cases, but limited the report to five examples,” she said. Studies have shown that this is a growing problem, she added.
In one case, a teen girl who had muscle and joint pain, backaches, headaches, and lethargy for years was diagnosed with chronic Lyme at an alternative medicine clinic. She was given antibiotics both orally an intravenously for five months, but did not improve. The antibiotics were stopped, but the catheter that doctors used to deliver the drugs was left in. The girl developed a bacterial infection that spread in her blood and caused a life-threatening complication called septic shock. In this condition, a person’s blood pressure drops dangerously. She recovered after being hospitalized for several weeks.
In another case, a woman in her late 30s was diagnosed with chronic Lyme disease, along with other infections, after she went to a local doctor because she felt fatigue and joint pain. She was given multiple courses of oral antibiotics, but got worse. She was then given antibiotics intravenously through a catheter for three weeks, but her joint pain continued, and other problems developed. She was hospitalized in an intensive care unit and given many treatments. But the patient continued to worsen and eventually died. Her death was attributed to septic shock related to a bacterial infection from her catheter.
No use of a catheter was warranted in the woman’s case, Nelson said.
The patients in the other three cases in the report had symptoms such as fatigue, cognitive difficulties, progressive weakness, swelling and tingling in the extremities. All were given either antibiotics or a treatment called immunoglobulin therapy, which is an infusion of fluid that contains antibodies, and all patients developed severe infections and needed to be hospitalized. Two of them eventually improved, while the third died from complications of amyotrophic lateral sclerosis (ALS, sometimes called Lou Gehrig’s disease), which she had previously been diagnosed with.
In January 2015, researchers reported in the journal JAMA Internal Medicine the cases of three patients who had cancer but whose cancer diagnoses were delayed because the individuals had initially been diagnosed with chronic Lyme. Two of those patients showed no evidence of ever having Lyme disease, the researchers wrote in their report. And although the third patient had tested positive for Lyme disease, he had been treated appropriately with antibiotics, and his “subsequent symptoms were incorrectly attributed to persistent infection,” the researchers wrote.
“Chronic Lyme disease is a misleading term that should be avoided,” those researchers wrote in their conclusion.
So far, there have not been systematic efforts to collect data about how often people diagnosed with chronic Lyme experience severe health problems, Nelson said. The researchers said they hope that cases can be more systematically studied in the future.
Patients who have been diagnosed with chronic Lyme should know that “infectious disease physicians don’t discount their symptoms and are trying to do right by them,” Adalja said. Doctors want to use treatments that are evidence-based, he said.