Life with Lyme

Over four years ago, Joe and Melissa Heath and at least one of their three children contracted Lyme disease. The Heaths, from San Diego, spent more than a year trying to pin down a diagnosis: The symptoms of each family member varied, none was aware of being bitten by a tick, and none had the telltale bull’s-eye rash. Joe, Melissa, and 17-year-old Hannah all eventually tested positive for Lyme disease. Tests for 13-year-old James were inconclusive.

Like up to a third of all Lyme victims, the Heaths did not experience relief of symptoms after standard antibiotic treatments. They also didn’t realize the controversy surrounding cases like theirs: Many doctors insist long-term Lyme patients no longer have an active bacterial infection.

After eight months of long-term treatment, the Heaths still struggle with symptoms: Joe, a middle-school teacher, suffers musculoskeletal pain that makes it difficult to get through the school day or do much else on weekends. Hannah’s surfboard rests unused, and she sometimes has to use voice-activated software for schoolwork because writing aggravates the pain in her hands. James suffers severe bouts of gastrointestinal problems. Melissa has improved, but during the worst of her painful symptoms she had to cut back on homeschooling her daughter and supplement her coursework with online classes.

May is Lyme Disease Awareness Month: The Lyme bacterium is transmitted by ticks as small as a poppy seed, and if doctors catch the infection early enough, it can often be cured with a short course of antibiotics. But early diagnosis is tricky. Lyme disease symptoms mimic a variety of disorders, and lab tests can be unreliable.

One tick can carry several bacteria or parasites that may infect a Lyme patient. Altogether, the Heaths were diagnosed with eight different infections.

Some medical organizations, like the Infectious Diseases Society of America and the federal Centers for Disease Control and Prevention, do not believe long-term Lyme sufferers are still infected with live bacteria. They advise against prolonged antibiotic treatment, which they believe is unhelpful and increases the risk of serious antibiotic complications. They use the term “post-treatment Lyme disease syndrome” to describe residual damage to tissues and the immune system that may occur during infection and persist afterward—much like a strep infection can lead to rheumatic heart disease that continues even after the strep bacteria are long dead.

“We are not precisely sure why these symptoms are persisting, but fairly careful studies have not been able to document still-active infection,” said Paul Auwaerter, an infectious disease specialist at the Johns Hopkins University School of Medicine and a member of IDSA. In addition, studies of long-term treatment of Lyme with antibiotics showed they worked no better than placebos, he said.

But other medical professionals believe these patients still battle an active infection resistant to initial treatment. They favor the term “chronic Lyme disease” and often advocate ongoing antibiotics.

The Lyme Disease Association and the International Lyme and Associated Diseases Society argue the most current research supports the existence of chronic Lyme disease.

Scientists are working to develop better diagnostic tests. For example, researchers at the University of California, San Francisco, may have discovered a way to diagnose Lyme disease based on a distinctive gene pattern in the white blood cells of patients.

Although Melissa Heath’s symptoms have improved, doctors give her little hope for a full recovery. The rest of her family is re-evaluating whether to continue seeking expensive treatments (totaling about $100,000 so far) that often aren’t covered by their insurance. Melissa, in the meantime, says she’s carrying around notecards with Bible verses that encourage her, such as Philippians 4:13: “I can do all things through Christ who strengthens me.”