A 47-year-old woman is referred to an infectious disease specialist by another practitioner for treatment of “chronic Lyme disease.” The patient describes a 10-year history of severe insomnia that has worsened over the previous 8 months. She also complains of droopy eyelids, neck and back stiffness, evanescent rashes, headache, blurry vision, difficulty concentrating, swollen glands, shortness of breath, chest pain, rib soreness, heart palpitations, upset stomach, irritable bladder, and auditory hallucinations.
She hands the specialist a 122-point checklist titled “Symptoms of Lyme Disease” and has checked 36 of the symptoms, encompassing every organ system. She requests treatment with 12 weeks of intravenous ceftriaxone.
The patient denies having spent time in wooded areas or being exposed to ticks. Her family history includes a sister who was diagnosed with chronic Lyme disease by a physician and treated with a prolonged course of ceftriaxone as well as a daughter who is ill with similar symptoms.
The woman’s Lyme disease antibody test by EIA, which was ordered by her family physician and performed at a local reference laboratory, was negative (<0.99) at 0.33 units. Another sample sent to a reference laboratory that uses nonstandard methodology and interpretation showed 5 positive lgM bands on immunoblot, instead of the standard maximum of 3, and a single IgG band. This laboratory interpreted those results as positive for Lyme disease.
The patient recently had been given a 1-month course of 100 mg of doxycycline twice daily by her family physician, but her symptoms persisted. She had seen a neurologist and an ophthalmologist. Both reported normal examinations.
The infectious disease specialist’s report describes a tired, anxious female with no rashes, adenopathy, cardiac irregularities, or focal neurologic signs noted by physical examination. The exam also shows no evidence of joint inflammation indicative of arthritis and no trigger point tenderness characteristic of fibromyalgia. Sedimentation rate and tests for lupus are negative. Her affect is subdued.
In evaluating the patient, the specialist faces a number of questions: Is this patient’s history compatible with Lyme disease? Do her complaints warrant further antibiotic treatment? How can she be guided into proper care? Is chronic Lyme disease a valid diagnosis?
Chronic Lyme disease is not a valid diagnosis. In this case, some of the patient’s subjective complaints may be compatible with late Lyme disease, but it is unlikely that Lyme disease is the cause of her symptoms. She lacks objective clinical findings and a history of tick exposure. Her lgG immunoblot, which one would expect to be positive in late Lyme disease, was negative because there were an insufficient number of bands. The positive lgM test alone does not warrant a Lyme disease diagnosis, since her symptoms have lasted for more than 30 days. Thus, she is not a candidate for antibiotic treatment for Lyme disease.
The patient suffers from myriad nonspecific symptoms referable to every organ system, and her exam and laboratory studies are normal. Therefore, her presentation is not suggestive of Lyme disease, chronic fatigue syndrome, arthritis, or any other known medical illness. Because of this, the infectious disease specialist feels that a psychiatric disorder should be seriously considered.
How did the infectious disease specialist handle the situation? He started by explaining that, based on her laboratory tests and the lack of objective findings, he believed that she did not have chronic Lyme disease and was not a candidate for antibiotic therapy. He also discussed the risks associated with antibiotic therapy. Although some patients experience temporary improvement of symptoms with antibiotic treatment, the risk of serious adverse events, especially when antibiotics are administered by the parenteral route, outweighs any potential placebo or anti-inflammatory benefits. He then explained that her set of symptoms, in the context of her normal exam and laboratory studies, were not compatible with other known medical illnesses, and he gently recommended that the next step was to seek psychiatric care for her somatic symptoms.
The patient initially was resistant to the idea of a psychiatric referral and was angry that she would not receive intravenous antibiotics. Because the infectious disease specialist did not have the benefit of a long-term relationship with the patient, he conferred with the patient’s primary care physician, who was able to convince her to undergo a psychiatric evaluation.
About the authors
Melissa Kemperman is a vector-borne disease epidemiologist with the Minnesota Department of Health, Johan Bakken is a consultant in infectious diseases with St. Luke’s Infectious Disease Associates in Duluth, and Gary Kravitz is a founding partner of St. Paul Infectious Disease Associates.
Cite as: Kemperman MM, Bakken JS, Kravitz GR. Dispelling the chronic Lyme disease myth. Minn Med. 2008;91(7):37-41.