Yale study says children don’t have Lyme, but medically unexplained symptoms
I recently came across a video interview featuring Dr. Eugene Shapiro, in which he discusses a study conducted at Yale’s pediatric infectious disease clinic, which found that chronically ill children suspected of having Lyme disease were instead diagnosed with medically unexplained symptoms (MUS).
Dr. Shapiro’s interview, conducted during the 2014 Pediatric Academic Societies Annual Meeting in Vancouver, Canada, sends a misleading and alarming message to clinicians, as well as family members serving as advocates for their children. It is also particularly concerning given that the highest reported incidence of Lyme disease occurs in children ages 5 – 14, according to the Centers for Disease Control and Prevention (CDC). Careful attention, including consulting with multiple medical specialists, should be given to this population in ensuring that a correct diagnosis is made.
According to Dr. Shapiro, Yale Medical Center’s pediatric infectious disease clinic reviewed its own patient database, focusing on cases made through outside referrals. The study found that more than half of the referrals were for patients suspected of having Lyme disease. However, 80-90% of those patients were deemed to not have ‘active Lyme disease,’ says Dr. Shapiro, but were instead diagnosed with medically unexplained symptoms or MUS.
The term MUS has been used in patients with significant symptoms without a physical disease.1 The term also includes individuals with overlapping clusters of symptoms such as irritable bowel syndrome, fibromyalgia or chronic fatigue.
The most common symptom attributed to MUS is pain, including diffuse myalgias, arthralgias, low back pain, headache, and dysuria.1 Other symptoms include fatigue and insomnia, tinnitus, atypical facial pain, chest pain, palpitations, dyspnea, bloating, nausea, abdominal discomfort, constipation, and diarrhea, chronic pelvic pain, dyspareunia, vulvodynia, and dysmenorrhea, pseudoseizures, dizziness, weakness.1
MUS is presumed to be a psychiatric diagnosis. Treatment of MUS has been dominated by talk therapies.2 Dr. Unigwe writes that “persons with medically unexplained symptoms are often not perceived as having chronic, enduring, mental and physical illness.”
According to Dr. Shapiro, patient follow-up studies found:
- “Nearly half of the parents were not happy with the results of the consult visit”
- “Nearly half [of the patients] received additional treatment for these ongoing symptoms”
- “More than half sought help from other providers, other than their primary care physicians”
Dr. Shapiro claims that 80-90% of the clinic patients did not have active Lyme disease. However, there is no way to ascertain if the Borrelia burgdorferi (Bb) infection is active or not in a patient. The statement is misleading, if not also inaccurate.
“Quite frequently parents and patients are seeking affirmation that these symptoms are real. And in fact, they are real. They’re just not caused by Lyme disease,” says Dr. Shapiro.
“It’s very clear that simply telling parents that Lyme disease is not the cause of these non-specific symptoms, like fatigue, and various pain syndromes is not sufficient,” states Dr. Shapiro.
Lyme disease patients may be misdiagnosed as MUS, in part due to the poor sensitivity of the two-tier diagnostic test for Lyme disease. Forty-one percent of 104 patients with physician diagnosed erythema migrans rashes were seronegative before and after treatment in a recent study.3
The majority of seropositive individuals on both acute and convalescent serology had a positive IgM western blot and a negative IgG western blot. Dr. Rebman and colleagues from the Lyme Disease Research Foundation in Lutherville explain “these findings underline the difficulty for rheumatologists in identifying a prior exposure to Lyme disease in caring for patients with medically unexplained symptoms or fibromyalgia-like syndromes.”3
Dr. Shapiro did not discuss whether he informed parents that there is no test to confirm MUS. Neither did Dr. Shapiro discuss whether he informed parents that there is no treatment for MUS.
Yet, Dr. Shapiro is dismayed to find that half of the chronically ill children sought treatment elsewhere, often with antibiotics. He also suggests that practitioners “figure out ways to try to reduce this healthcare seeking behavior where patients are trying to get treated unnecessarily with antimicrobials.”
As an Internist and Epidemiologist, who has treated Lyme disease patients for the past 25 years, I am reluctant to jump to a diagnosis of MUS in children in the absence of a reliable test and an effective treatment.
Lastly, whether it is our patient or our child, seeking second medical opinions, consulting with other specialists and vigorously researching every avenue that might improve the health and quality of life for that child is of the utmost importance. No physician should discourage families from seeking to find treatment that works and will bring relief to their child.
- Isaac ML, Paauw DS. Medically unexplained symptoms. The Medical clinics of North America. May 2014;98(3):663-672.
- Unigwe C, Rowett M, Udo I. Reflections on the management of medically unexplained symptoms. The psychiatric bulletin. Oct 2014;38(5):252.
- Rebman AW, Crowder LA, Kirkpatrick A, Aucott JN. Characteristics of seroconversion and implications for diagnosis of post-treatment Lyme disease syndrome: acute and convalescent serology among a prospective cohort of early Lyme disease patients. Clin Rheumatol. Jun 13 2014.