Unproven Lyme disease tests and treatments are proliferating
WASHINGTON (AP) — Lyme disease can cause serious harm, but so can bogus tests and treatments.
The complexity of diagnosing the tick-borne disease has given rise to an entire industry of unapproved tests and unproven alternative treatments that experts say should be avoided, including lasers, herbal remedies and electromagnets
“It really is a buyer-beware situation,” said Dr. Robert Smith, a Lyme specialist at MaineHealth Institute for Research.
There is no one-size-fits-all approach to diagnosing Lyme. Doctors use a combination of visual clues, information reported by their patients and the standard medical test, which has a number of limitations.
When patients show the classic symptoms — including a bull’s eye rash, fever and fatigue — a short course of antibiotics usually resolves them. But a subset of patients will go on to experience months or even years of arthritis, pain and fatigue — poorly understood symptoms that overlap with a number of other medical conditions.
That has left an opening for so-called “nonstandard” Lyme tests and treatments. Interest in those products has been amplified by influencers and a growing list of celebrities attributing various health problems to the disease, most recently Justin Timberlake.
That might lead patients to spend hundreds or thousands of dollars on bogus tests, which aren’t covered by insurance, followed by unapproved treatments that may do more harm than good. And it’s possible some of them may not have had Lyme at all.
This article is part of AP’s Be Well coverage, focusing on wellness, fitness, diet and mental health. Read more Be Well. In a recent consensus report from the National Academies of Sciences, Engineering, and Medicine, Smith and other experts called for more funding and research into the chronic symptoms experienced by some Lyme patients.
“The key thing is that these people are suffering and we need to come up with strategies to alleviate that suffering, whatever the trigger was,” Smith said.
At the same time, Smith and his colleagues warn that “profiteering entities” are pushing Lyme products that are “costly, may not work and may cause harm.”
Here’s a look at the established approach for testing and treating Lyme and how to spot unproven alternatives.
First identified 50 years ago, Lyme disease takes its name from the Connecticut town where the earliest cases were diagnosed.
The challenge of diagnosing it begins with the standard laboratory test, which comes with a number of caveats that must be carefully weighed.
The bacteria that causes Lyme, carried by certain ticks in the Northeast and Midwest, doesn’t circulate throughout the body. Often it stays in the skin near the tick bite, making it hard to detect.
Instead, Lyme tests look for antibodies, proteins that help fight off foreign invaders, which usually only appear in the blood several weeks after an infection.
That’s the best approach available, but experts acknowledge its shortcomings: If the test is given too early it will come back negative because antibodies haven’t yet appeared.
“That’s one of the problems,” Smith says. “We can’t say for sure in the first couple of weeks that it’s Lyme disease or not based on these tests.”
Also, these antibodies continue to circulate in the blood long after the infection. That means the test can return a positive result years or even decades later — making it difficult to distinguish between a new case and an old one.
Medical guidelines deal with this ambiguity by recommending doctors diagnose and start antibiotics in all patients who have the signature bull’s eye rash associated with Lyme. But as many as 30% of those infected never get the rash, causing further uncertainty.