Some physicians believe that people with Lyme disease can develop a chronic illness that is relieved by long-term use of antibiotics. But new guidelines for the treatment of Lyme disease, issued by the Infectious Disease Society of America (IDSA), have raised a stir by questioning this assertion.
The IDSA guidelines say that 95% of people with Lyme disease are cured by a 14- to 28-day course of oral antibiotics and that no credible scientific evidence suggests that the Lyme disease infection itself continues past the recommended initial treatment. Although the guidelines state that physicians should use their own judgment in treating people who appear to have chronic Lyme disease, some specialists note that asserting their judgment in the face of the new guidelines is difficult because of possible repercussions from both state medical boards and insurance companies.
There is no question that Lyme disease, the most common infection caused by tick-borne bacteria, can result in arthritis and other conditions if left untreated. And it is sometimes challenging to diagnose and deal with. Caused by the bacterium Borrelia burgdorferi, the infection’s symptoms can be confused with those of other diseases such as fibromyalgia, Parkinson’s disease, Lou Gehrig’s disease, or multiple sclerosis.
The most common and only definitive symptom of Lyme disease is a circular “bull’s-eye” rash that appears seven to 14 days after a tick bite. Other Lyme disease symptoms range from flu-like joint and muscle pain, fatigue, fever, and swollen lymph nodes to arthritis, neurological problems (memory lapses, facial paralysis, inflammation of the lining of the brain, or meningitis), or heart problems such as abnormal rhythm or slowed heart rate.
Further complicating Lyme disease diagnosis is the fact that the same tick that transmits Lyme disease may also carry other bacteria, including the ones that cause human granulocytic anaplasmosis (HGA), an infectious disease that also causes flu-like symptoms, and babesiosis, a sometimes fatal illness. Both of these can be identified by blood tests.
Among people who develop Lyme disease but who do not get prompt treatment with antibiotics, 60% develop arthritis (usually affecting the knees), 10% develop facial nerve palsy or facial paralysis, and 5% experience heart-related complications. Although blood tests can verify the presence of antibodies to Borrelia burgdorferi after weeks or months of infection, early results are unreliable.
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Chronic Lyme Disease vs. Post–Lyme Disease -- The issue in contention, however, is not the initial Lyme disease diagnosis; it is the ISDA’s assertion that “chronic Lyme disease syndrome” is a misnomer. A more accurate label, it says, is “post-Lyme disease syndrome.”
The largest trial to study the syndrome described it as including any of a number of symptoms -- muscular pain, pain radiating down an arm or leg, tingling, numbness, or cognitive difficulties -- that appear within six months of initial infection and persist for at least six months. In a step-by-step review of more than 400 studies, the new guidelines lay out what might explain the difficulties that persist past initial treatment in a minority of patients.
Some symptoms may be due to inflammation unrelated to the Lyme disease infection, the guidelines say, or inflammation that does result from Lyme disease infection may simply be slow to improve. But the guidelines are quick to add that at least three randomized trials and one retrospective study indicate that extended antibiotic treatments don’t help.
Ongoing difficulties may also be due to a simultaneous tick borne infection such as babesiosis or HGA. And the aches and pains that trouble people after Lyme disease may be nothing unusual: Studies show that 20–30% of the general population experiences chronic fatigue, and 11% of people report chronic pain accompanied by depression, anxiety, and fatigue. About one in five adults is diagnosed with arthritis, and 2% have fibromyalgia, another condition that affects some patients infected with the Lyme bacterium. Unfortunately, no reliable study has been done to compare these figures with the numbers of people who appear to have post-Lyme disease syndrome.
Physicians opposed to the guidelines, however, note that the assertions run counter to the patterns of post-Lyme disease illness they see in their patients and have been relieving with long-term doses of antibiotics. Some also feel the trials cited in the guidelines did not last long enough to establish reliably whether or not the antibiotics were helpful.
