The doctor’s office was just five short blocks from Brandi Dean’s home in Boston, normally an easy walk for her. But in August 2011, the 34-year-old had to inch down the sidewalk, stopping every few steps to lean on the double stroller in which her sons, ages 21/2 and 5 months, were riding. When she finally reached the waiting room after half an hour, she collapsed into the closest chair and broke down sobbing. “I was exhausted and incredibly scared. I didn’t know what was happening to me,” she says. A former Coast Guard search-and-rescue soldier, Brandi had been superfit — running, mountain biking, hiking and doing yoga. Now she was so tired and weak, she had to scoot on her butt to go up and down the stairs in her home.
Brandi’s health problems — vertigo, intermittent hearing loss, panic attacks, fatigue — had begun 10 months earlier, not long after she noticed a bug bite on her backside. Her primary care doctor chalked her symptoms up to pregnancy, then to her being a busy, sleep-deprived mom. “I figured I’d start feeling better soon,” she says. But months later, she wound up in the ER with tingling and weakness on her right side, and the ER doctor tested her for Lyme disease, a bacterial infection transmitted by blacklegged ticks. Although she hadn’t had the characteristic bull’s-eye rash, the result was positive.
“I was just relieved to have an actual diagnosis. I thought, Well, thank God that’s over,” Brandi recalls. She started a 21-day course of oral antibiotics, the standard treatment for Lyme disease, and within a day or two she felt normal.
When Brandi finished the medication, though, the symptoms roared back — which was why she had returned to see her primary care doctor that day in 2011. “He went through my records and said, ‘I don’t think you have Lyme, because Lyme symptoms are more flu-like,’ ” she says. “He gave me Ativan for my dizziness and Zoloft for anxiety and sent me on my way. I felt embarrassed. It seemed to me like he was implying that it was all in my head.”
The meds didn’t help, and Brandi remained unusually exhausted. Over the next six months, she saw a neurologist; an ear, nose and throat doctor; a psychiatrist; and even an infectious-disease specialist, all of whom said essentially the same thing: She was just tired and anxious because she’d recently delivered her second child. “It was a terrifying and lonely time,” she says. “I felt terrible — I was actually worried that I was dying — and the fact that doctors and some of the people I knew thought I was nuts made it all so much worse.”
At last, a friend put her in touch with a doctor who had treated many Lyme patients. When she told the doctor how she was feeling, the doctor said, “ ’I know you’re really sick, and I’m going to try to help you get better.’ I cried through the whole appointment out of sheer relief,” Brandi says. A second opinion confirmed that she had a persistent Lyme infection — what’s now known as Post-Treatment Lyme Disease Syndrome (PTLDS). That doctor prescribed a month of IV antibiotics — which Brandi gave herself twice a day through a catheter in her arm — as well as plenty of rest and a healthy diet. “At that point I would have done just about anything to feel better,” she says. It took four years, but eventually she did.
Why Lyme May Linger
In some ways, Brandi was one of the lucky ones, since she ultimately found an explanation for her health woes. Recent research suggests that somewhere between 10% and 20% of people treated for Lyme with the standard 21 days of antibiotics develop PTLDS — lingering symptoms that last six months or more. The risk of PTLDS is higher the later Lyme is diagnosed, but it can happen to anyone, and many patients endure debilitating muscle and joint pain, anxiety and fatigue for years before finding a doctor who understands PTLDS.
That’s particularly scary given that the Centers for Disease Control and Prevention now estimates that more than 300,000 people in the U.S. are diagnosed with and treated for Lyme every year. The number has risen over the past 25 years and will continue to do so if, as experts predict, our changing climate provides increasingly favorable conditions for ticks. “As the environment becomes warmer and winters become shorter, more ticks are likely to survive their whole two-year life cycle — and more ticks means more Lyme disease,” says Richard Ostfeld, Ph.D., senior scientist at the Cary Institute of Ecosystem Studies in Millbrook, NY. Also, colder areas that have never before had Lyme-carrying ticks may start to see them, he says.
And as if that weren’t enough, it now appears that there’s a second type of bacteria that causes Lyme in addition to the one doctors already knew about. In February, the CDC and Mayo Clinic released a study showing that this new species of bacteria had caused Lyme disease in patients in Minnesota, Wisconsin and North Dakota, according to Jeannine Petersen, Ph.D., a microbiologist at the CDC. In addition to the fever, headache, rash, neck pain and (in later stages) arthritis of standard Lyme, the new species of bacteria can cause nausea, vomiting and a rash that covers larger areas of the body, she says.
Doctors have long insisted that if Lyme is caught and treated in the first few months, it is cured — and fortunately, that’s true for most people. But often Lyme is not caught early, and when the disease has time to become more entrenched in the body, the risk of PTLDS is increased. Since a Lymecarrying tick is the size of a poppy seed, many people don’t realize they’ve been bitten; others don’t see a doctor when they start to feel bad. Of those who do seek treatment, a significant number don’t have a bull’s-eye rash, the clearest diagnostic indication of Lyme, so doctors may not know to test for Lyme.
If you don’t receive antibiotics for Lyme within the first two to six weeks of having it, the bacteria can spread throughout your body, causing diverse, often roving ailments — from fatigue and difficulty concentrating to heart palpitations to muscle weakness, numbness, tingling and swollen, painful joints. And the longer you have the infection, the harder it is to treat and the more likely doctors are to attribute the symptoms — which include some that are incredibly common among midlife women (who isn’t tired and achy?) — to some other issue, like chronic fatigue, fibromyalgia or stress. And for reasons doctors don’t fully understand, some people who get Lyme develop PTLDS even if they are treated early, which sometimes leads their doctors to conclude that they never had Lyme in the first place.
Fortunately, scientists are now focusing on what’s going on in the body when Lyme lingers, says John Aucott, M.D., director of the Johns Hopkins Lyme Disease Clinical Research Center, and are exploring on several fronts. “Current research will help us unravel the mystery of persistent Lyme,” he says.
Research to the Rescue
One of the biggest challenges in getting to the bottom of PTLDS is that existing tests aren’t so great. “Statistics vary, but the accuracy of the currently used tests is around 60%,” says Ying Zhang, M.D., Ph.D., a microbiologist at Johns Hopkins University’s Bloomberg School of Public Health. That means that diagnosing Lyme through blood tests is already iffy; with lingering Lyme, it’s even more confounding. These tests measure antibodies to the disease in the blood, so they can only confirm exposure to the Lyme-causing bacteria at some point, but not whether there is an active infection that will respond to antibiotics.
In other words, diagnosing the illness — as well as determining how long you’ve had it — is largely a judgment call on the part of your doctor. That’s not a big issue if you’re pretty sure you’ve just been infected: “If a patient from a Lyme-endemic area has symptoms that fit and you’ve eliminated other likely culprits, it’s reasonable to consider that he or she might have Lyme disease,” says Brian Fallon, M.D., director of Columbia University Medical Center’s Lyme and Tick-Borne Diseases Research Center. But for those with PTLDS who have already been treated with antibiotics, the lack of definitive testing is a bigger problem.
That’s because some people with PTLDS may still have an active infection that will get better with a more intensive regimen of antibiotics, as Brandi’s eventually did. But for those who no longer have an active infection, it may be that their symptoms are caused by something else entirely. “One theory is that the initial infection might trigger an autoimmune-like reaction, in which case we’d treat it with immune-modulating drugs,” not with antibiotics, says Dr. Aucott. “Prescribing antibiotics for an immune reaction would be like putting up sandbags after a hurricane has devastated a town.” Thanks to a number of ongoing studies, better testing that will help clarify the issue should be available in the next three to five years, says Dr. Fallon.