Chronic Lyme disease has hit the lives of many americans. The ailment can cause muscle aches, mental fog, and fatigue for years or even decades.
With a number of celebrities and pro athletes recently discussing how Lyme disease has altered the course of their careers, awareness for the long-term effects of the disease has grown.
Singer Shania Twain, for example, said earlier this year that a struggle with dysphonia, which left her temporarily unable to sing, was caused by Lyme disease.
Pop star Avril Lavigne was bedridden for five months after contracting Lyme disease.
Pro golfer Jimmy Walker revealed in April that he was battling Lyme disease, and took a month off the PGA Tour as he recovered.
“I felt awful, like I had the flu every other week,” Walker, who thinks he contracted the disease in the fall, told The New York Times.
Months later, he is still taking 35 pills a day to treat his condition.
Researchers are still trying to figure out exactly how and why Lyme disease affects people in different ways. But evidence that the bacteria-borne disease sometimes remains in people’s bodies long after they’ve completed initial antibiotic treatments appears to be mounting.
“A lot of time people are talking of different things when they say ‘chronic Lyme disease,’” Dr. Adriana Marques, who leads clinical research of Lyme disease at the National Institutes of Health (NIH), told Healthline.
Chronic Lyme disease, late-stage Lyme disease, and post-treatment Lyme disease syndrome are all names for vaguely defined conditions in which people experience symptoms they and their physicians have trouble explaining.
Symptoms can include debilitating fatigue, muscle and joint pain, headaches, mental fog causing difficulty with memory or finding words, irritability, and sleeplessness.
Some people who experience these symptoms have been previously diagnosed with, and treated for, Lyme disease.
But others deal with symptoms for years without ever getting a positive diagnosis for the condition due to the often highly inconclusive diagnostic results.
Treating what you don’t know
The other big question is how to treat something with a cause that can’t always be clearly identified.
Antibiotics are sometimes prescribed on the theory that B. burgdorferi might still be hiding out in the body somewhere. However, although there have been anecdotal short-term successes, Marques said no studies have shown sustained benefits from antibiotics to people with chronic Lyme disease or those with post-Lyme disease syndrome.
The majority of people who contract Lyme and are treated for it with a course of antibiotics do get better with time.
But those who don’t — 10 to 20 percent, according to Marques’ review of the research — fall into the post-Lyme disease syndrome category.
Those people continue to experience persistent or intermittent symptoms a year or more after completing the antibiotics therapy.
Children appear less likely to develop long-term symptoms as are those who don’t delay antibiotics or have less severe cases of Lyme in the first place.
In cases of chronic Lyme, people who test negative for the disease despite symptoms could be infected with another tick-borne illness or have an autoimmune disorder or other problem.
Tick-born disease is growing
Researchers have predicted higher tick numbers in some parts of the country this summer.
Tick ranges have been expanding due to warmer winters, and more people are getting bitten by ticks as cities continue to sprawl out into wooded areas.
So, what is one to do if they find theirself experiencing Lyme-like symptoms?