There are two camps when it comes to discussing chronic Lyme disease. One believes there is such a condition while the other questions its existence. The controversy can make deciding how to treat patients with "chronic Lyme disease" symptoms complicated. What is chronic Lyme disease, according to experts? Is it the same as late-stage Lyme disease?
What Is Lyme Disease?
Lyme disease is an infectious disease caused by Borrelia burgdorferi, a bacterium classified as a spirochete. Borrelia burgdorferi thrives inside of certain ticks and can be spread to humans by the bite of an infected tick. There are three stages of Lyme disease: early localized stage, early disseminated stage, and late stage. Lyme disease is named after the town where it was first discovered in 1975 in Lyme, Connecticut. Lyme disease is the most common tick-borne infection in the northern hemisphere. In North America, it is caused exclusively by B. burgdorferi. In Europe, other species of Borrelia cause the condition.
Consequences of Lyme Disease
Lyme disease is a complex infection that causes various symptoms to develop, depending on the stage of the infection. A skin lesion known as erythema migrans is the most common symptom associated with early stage Lyme disease. There can be neurologic, cardiac, and arthritic problems that develop in later stages of Lyme disease. Pauciarticular arthritis (affecting 4 or fewer joints) is the most common problem associated with late-stage Lyme disease.
While most patients respond well to antibiotic therapy, some are left with residual fatigue, musculoskeletal pain, and memory or concentration problems as well as other symptoms common to a host of other conditions. Some patients, including those who have been untreated or inadequately treated for Lyme disease, can develop arthritis that persists for months or years.
Is Chronic Lyme Disease a Misnomer?
Some doctors refer to patients with residual symptoms as having "chronic Lyme disease," but the accuracy of the name has been questioned. Generally, the term "chronic Lyme disease" is used to describe those patients whose arthritis or other subjective symptoms such as headache, fatigue, and arthralgia are due to an active infection caused by B. burgdorferi that is unresolved despite appropriate antibiotic treatment. As such, the term and its definition are questioned by many experts in the field who do not believe that post-treatment symptoms are due to a chronic active persistent infection with Borrelia and should not be further treated with long-term antibiotics.
The term "chronic Lyme disease" is at times erroneously used synonomously with "late-stage Lyme disease" which is a proven entity. Late-stage Lyme occurs in cases that may be undiagnosed at the time of infection and therefore untreated. Years later, patients can have complications due to active infection during the late phase such as pauciarticular arthritis or neurological problems. In order to make this diagnosis, the patient must be untreated and have laboratory testing that reveals the patient has evidence of early or late-stage Lyme disease in addition to symptoms.
The Controversy Surrounding Chronic Lyme Disease
Clinicians who believe that a patient can have ongoing symptoms due to active infection despite an appropriate course of antibiotics (chronic Lyme disease) may opt to treat with multiple antibiotics for months or even years. Experts disagree with this tactic since studies have revealed that such inappropriate or frequent use of antibiotics is not successful and has been linked to the development of drug-resistant strains of bacteria, unnecessary side effects and even life-threatening infections. To give antibiotics long term, based on presumption of an ongoing infection despite prior therapy or in the absence of concrete evidence, is controversial.
Doctors and patients who believe chronic Lyme disease is a real condition have formed societies and support groups. Researchers who question its existence are often criticized. But where does that leave the patient who just wants to get well? What's the harm in naming it chronic Lyme disease?
According to a "Critical Appraisal of Chronic Lyme Disease" in the New England Journal of Medicine (NEJM), the harm comes because it's a misnomer and some experts view it as a misdiagnosis of other conditions with similar or overlapping symptoms. Experts acknowledge that a "post-Lyme syndrome" exists that can occur after treatment of Lyme disease and may take time to resolve. This syndrome is strikingly similar to chronic fatigue syndrome and fibromyalgia. Experts do not believe this is due to ongoing, active disease and do not recommend additional treatment with more antibiotics. Those who believe that post-Lyme treatment symptoms are due to active infection oppose such experts and advocate for longer courses of antibiotics -- sometimes for years.
On The International Lyme and Associated Diseases Society website (ILADS), several articles discuss the debate and controversy over treating Lyme disease and especially chronic Lyme disease. For now, regarding the validity of "chronic Lyme disease" -- the debate rages on.
A Critical Appraisal of "Chronic Lyme Disease". New England Journal of Medicine. October 4, 2007. Feder FM et al.
Late and Chronic Lyme Disease: Symptom Overlap With Chronic Fatigue Syndrome & Fibromyalgia. ProHealth. Sam Donta MD. May 15, 2002.