When Lyme Lingers
When a deer tick transmits the bacterium, the most common symptoms include a slowly expanding bull’s-eye rash, often accompanied by headaches, neck stiffness and pain in joints, muscles and other soft tissues. But there isn’t always a rash—approximately 30% of patients do not recall a rash—and Robert didn’t have one. Lyme is easiest to treat if caught early, and patients who see the rash and go to the doctor will typically be prescribed a few weeks of the antibiotic doxycycline. That works about 90% of the time, and even if they’re not treated, most patients with this earliest stage of Lyme disease will get better within several weeks. Others, though, may continue to have joint pain, fatigue or other symptoms for weeks or months, whether or not they received antibiotics.
For some who don’t realize they have Lyme disease, a second and sometimes a third stage may bring increasingly severe symptoms. In stage 2, the bacterium often spreads to other parts of the body. Some two to 10 weeks after being infected, about 15% of untreated patients may get very sick, with neurological symptoms, which can include meningitis with intense headaches, facial palsy or other cranial nerve problems, or severe pain or paralysis of nerves radiating into the arms, legs or abdomen. That’s what happened to Robert during stage 2, when his sciatic nerve was affected.
Also during stage 2, about 5% of patients who don’t get treatment will have heart block (a disease of the heart’s electrical system). This stage, too, is likely to respond to a course of antibiotic pills taken for up to a month. If there are neurologic problems or complete heart block, a patient may get an intravenous antibiotic. But even for patients who have progressed to stage 2 of Lyme disease, symptoms are likely to go away within several months, with or without antibiotics.
In stage 3, which may happen if Lyme remains undetected and untreated, some six in 10 patients develop intermittent attacks of arthritis affecting one or more joints. Eventually one or both knees may become inflamed and the arthritis more persistent. Stage 3 can be harder to treat than the earlier stages of Lyme disease, although most patients are helped by a longer, four- to eight-week course of antibiotics. In a few cases, though—and this is what happened to Robert—patients will suffer inflammation in a knee for months or even several years after the spirochetal bacterium is gone, a condition known as antibiotic-refractory Lyme arthritis.
This complex and variable course of Lyme disease has helped sow considerable confusion about the disorder. There is even a post-Lyme disease syndrome that’s similar to conditions such as fibromyalgia or chronic fatigue syndrome that are common in the general population. Any of those may arise not only after someone has had Lyme disease but also following other infections or stressful life events. “Chronic Lyme disease” can be a catch-all diagnosis for such syndromes—even when there’s little or no evidence that a patient was ever infected with Lyme.
That diagnosis has spawned a class of “Lyme literate” doctors who will prescribe long-term antibiotics—stretching a year or more, sometimes without any sign of Borrelia infection past or present. That approach and the phrase “chronic Lyme” itself are extremely controversial, with many physicians and public health officials asserting that such treatment is irresponsible and even dangerous. “The chronic Lyme ideology,” Steere says, “has been very seductive for someone who has gone to doctors who can’t explain what’s wrong and then finds one who says, ‘You have Lyme, and I will make you well.’ ”