Pediatric Lyme disease: over- or under-diagnosed?

Townsend Letter for Doctors and Patients, Nov, 2006 by Marcus A. Cohen

In July 2004, the Lyme Disease Association (LDA) published my book-length report Lyme Disease Update. One chapter digested studies in medical journals on the difficulties in diagnosing Lyme, and it contained case histories of children with persistent infection. Because symptoms of Lyme can mimic symptoms of numerous other conditions, doctors had first diagnosed a few of these children with look-alike illnesses. The Lyme Disease Update elsewhere referred to similar cases, where parents bumped into roadblocks in their search for doctors unafraid to diagnose and treat pediatric Lyme.

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The main sources of these barriers? Some state medical boards, most insurers, and certain physicians, who regard Lyme disease as over-diagnosed generally. They watch MDs specializing in chronic Lyme, tracking the number of patients these MDs diagnose with Lyme and how often they prescribe long-term antibiotics to handle the infection.

Curious to know if the situation with long-term pediatric Lyme had improved lately, I interviewed Pat Smith, president of the LDA, and Sandy Berenbaum, LCSW, BCD, a psychotherapist practicing in Brewster, New York, who has counseled children with Lyme since 1991. The interview with Pat Smith pinpoints conditions still bedeviling the diagnosis and treatment of pediatric Lyme disease and supplies an overview of various problems faced by children with Lyme. This interview also concentrates on difficulties encountered by physicians specializing in pediatric Lyme and offers an overview of activities by patients and groups around the US directed at improving diagnosis and treatment. Sandy Berenbaum's interview looks at pediatric Lyme from the perspective of a therapist experienced in helping children and parents cope with the numerous treatment and developmental problems involved; that interview gives a dramatic close-up of these problems through case histories. My final question to Ms. Berenbaum prompted a longer than expected reply on the use of integrative approaches in Lyme disease treatment.

An Interview with Pat Smith

MAC: Ms Smith, have conditions improved for diagnosing and treating Lyme in children over the past few years? If not, what are the main obstacles to improvement?

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PS: Conditions have not really improved since 2004. One of the main obstacles to improvement stems from the Centers for Disease Control and Prevention (CDC) surveillance criteria and the misuse of these criteria by physicians, medical boards, insurers, even schools. Surveillance criteria are developed as an epidemiological tool to be able to compare the numbers from one state to another. They are very narrow criteria so the CDC can compare "apples to apples." The CDC is able to see trends in disease with those small but solid numbers. Clinical criteria for diagnosis need to be broader to include cases that physicians determine are Lyme through examination, history-taking, exclusion of other illnesses, and testing, if necessary, as an adjunct. The CDC has clearly delineated this distinction between surveillance and clinical criteria on its website and in testimony. It recommends that physicians make a clinical diagnosis.

The CDC changed its surveillance criteria at a 1994 conference with the Association of State and Territorial Public Health Laboratory Directors in Dearborn, Michigan, implementing a two-step testing protocol: first, an ELISA test, then, if positive, a follow-up Western Blot (WB). But the ELISA is highly insensitive. It should not be used as an initial screening test because it misses too many adults and children infected with Lyme. The WB, a better tool, was watered down at Dearborn. Two bands were removed, bands 31 and 34; these are bands that chronic patients often express. Under the present criteria, for surveillance purposes, patients must have only five out of ten specific bands on IgG and two out of three on IgM (excluding bands 31 and 34) to be considered positive by the CDC.

Furthermore, CDC surveillance criteria require an erythema migrans (EM) rash or positive serology and major system involvement--cardiac, neurological, skeletal. But research indicates that the classic bull's eye may only occur 50-60% of the time. Sometimes no rash occurs, or a rash that has a different appearance entirely may manifest.

Obtaining positive serology with the ELISA is a real problem as well. Antibody formation is dependent upon the immune system of each adult and child, and experts say the best results are obtained four to 12 weeks after the bite. Since early diagnosis and treatment ensure a better outcome for Lyme patients, that length of treatment delay may cause more prolonged suffering for patients or lead to development of chronic disease. Additionally, as demonstrated in research, results may be negative because antibodies can be bound up with antigen in complexes, and ELISAs only test for free antibody. There is a process for separating complexes and then testing, but it is not commercially available. A related problem is that polymerase chain reaction (PCR) tests, which are sensitive enough to detect genetic material from the Lyme spirochetes, the spiral-shaped bacteria responsible for Lyme disease, are not accepted by the CDC in diagnosing Lyme. Some doctors do use these tests to aid in diagnosis, and PCR results that are positive for Lyme disease should count in diagnosis (although a negative PCR does not rule out disease). CDC does accept PCRs for other diseases, including pertussis.