Chronic Lyme Disease: Fact or Fiction

June 1, 2008

Shapiro discussed the numerous studies that reiterate- despite a troubling grassroots opinion among lay Lyme disease advocates and a select group of physicians- that the term "chronic Lyme disease" is a misnomer for other symptom complexes and that long-term antibiotic therapy provides no benefit.1,2 "Patients with these symptoms have been studied at many different scientific centers," explained Shapiro, extrapolating from an article he coauthored that appeared in the October 14, 2007, issue of the New England Journal of Medicine.1 "The majority have no evidence of ever having been infected with the bacteria that causes Lyme disease, either by clinical history or by laboratory tests.

FigureIt is clear that Lyme disease does not need long-term antibiotic treatment," asserted Eugene D. Shapiro, MD, professor of pediatrics, epidemiology, and investigative medicine at Yale University School of Medicine, in an interview with

Infections in Medicine

. "Aside from the fact that it is expensive and that affected patients aren't being treated for whatever their real problem is, prolonged antibiotic therapy is associated with many complications. There are documented cases of deaths and, of course, numerous complications from use of intravenous antibiotics and indwelling catheters for prolonged periods. In addition, prolonged antibiotic therapy poses a risk for the community at large because long-term antibiotic use promotes emergence of multidrug-resistant organisms. So, it is not as though prolonged use of antibiotics for the treatment of Lyme disease is benign. You have no benefit and a lot of risks."

Shapiro discussed the numerous studies that reiterate- despite a troubling grassroots opinion among lay Lyme disease advocates and a select group of physicians- that the term "chronic Lyme disease" is a misnomer for other symptom complexes and that long-term antibiotic therapy provides no benefit.1,2 "Patients with these symptoms have been studied at many different scientific centers," explained Shapiro, extrapolating from an article he coauthored that appeared in the October 14, 2007, issue of the New England Journal of Medicine.1 "The majority have no evidence of ever having been infected with the bacteria that causes Lyme disease, either by clinical history or by laboratory tests.

"There is another group of patients-a small one- who have a different disease, such as multiple sclerosis. These patients may be unwilling to accept the given diagnosis but are content to accept a diagnosis of chronic Lyme disease. Then there is a group of patients who have either historical or serological evidence of having had Lyme disease in the past. These patients have been well studied. When symptoms in these patients persist after treatment, we call them post-Lyme symptoms. When the symptoms persist for more than 6 months, we call them post-Lyme syndrome. All of the 5 randomized, double-blind, clinical trials of long-term antibiotic therapy in these patients have concluded that such therapy is not beneficial,"2 Shapiro said.

Whereas stress and somatization might play a role in the emergence of chronic nonspecific symptoms that are being diagnosed as chronic Lyme disease by some clinicians, long-term manifestations of Lyme disease (late Lyme disease) may be associated with autoimmunity issues or with toxic or metabolic neurological dysfunction that may be a sequela of prior infection.1

Advocacy groups have politicized the diagnosis and treatment of these symptomatic states, which they define as chronic Lyme disease. Indeed, in November 2006, a month after release of the Infectious Diseases Society of America (IDSA) Lyme Disease Treatment Guidelines, the attorney general of Connecticut, Richard Blumenthal, influenced by vocal advocacy groups, filed a civil investigative demand, claiming possible antitrust violations by the IDSA.3,4 (The action was embellished by an aggressive press release campaign by chronic Lyme disease advocates, which monopolizes Internet searches on the topic.) More recently, the IDSA was compelled to send a letter to Congress opposing a proposed bill intended to promote education and research of Lyme disease because the bill repeatedly refers "to a condition that has been described inaccurately as 'chronic Lyme disease.'"5

"Amid the controversy, you do not hear about all the patients who have Lyme disease who are cured. There are studies showing that way more than 95% of patients who receive conventional courses of treatment are cured," said Shapiro. "Part of the problem is that telling patients [in whom Lyme disease cannot be confirmed] that they don't have Lyme disease doesn't solve their problem. They may become angry. In addition, doctors are not good at dealing with diagnosis and management of chronic nonspecific symptoms."

In the article coauthored by Shapiro in concert with a large, international group of physicians, clinicians are urged to address patients empathetically and candidly about their symptoms and what is known about Lyme disease and the controversies surrounding its treatment.1

The physician should focus on providing emotional support and management of individual symptoms, such as pain and fatigue. Failure to do this effectively can make the patient vulnerable to a host of unproven and potentially dangerous therapies.1,4

Erratum
The editor of Infections in Medicine regrets to inform readers that a misprint appeared in the Table in the case report: "Acute Infection With Parvovirus B19 Manifesting as Brain Stem Encephalitis," which appeared in the April issue of the journal. The Table is reprinted here. Apologies to the authors of the case and also to the readers for this oversight.

Table