Dismissing chronic Lyme disease for somatic symptom disorder diagnosis

The authors of this case series suggest that children with chronic Lyme disease symptoms be re-evaluated and diagnosed with somatic symptom disorder (SSD). Their article “Somatic symptom disorder should be suspected in children with alleged chronic Lyme disease” appears in the European Journal of Pediatrics. [1]

Peri and colleagues reviewed the medical records of children admitted to a hospital in Italy between January 2016 and December 2018. They identified 26 children who had a diagnosis of Lyme disease. Seven fit the criteria for chronic Lyme disease. But the authors disputed these findings, suspecting instead that the patients suffered from a somatic disorder.

According to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorder (DSM-V), somatic symptom disorder is defined as:

“the presence of nonspecific discomforting somatic symptoms (mostly head, abdominal, back, and muscle pains) and excessive thoughts on a possible disease, that seriously undermine children’s daily life causing in severe cases school absenteeism, loss of interests and activities, isolation from peer, abandonment of sports activities, for more than 6 months. The attention focused on somatic symptoms, the repeated request for help, and the avoidance of physical activity strongly support the diagnosis of SSD.”

All 7 children lived in an endemic area for Lyme disease. Two children had an IgM positive Western blot test, but none had a positive IgG test. Other diagnostic tests were negative.

All of the children were ill despite multiple courses of antibiotics. For 5 of the children, symptoms lasted longer than 6 months and “strongly impaired their school attendance,” writes Peri, a child neuropsychiatrist.

Their symptoms included headaches, reports of low-grade fever, arthralgias without signs of active inflammation and vague asthenia [abnormal physical weakness or lack of energy] not linked to physical efforts.

“One patient reported difficulty in walking so as to arrive at the use of a wheelchair and one visual disturbance,” writes Peri.

Four of the children had specific psychosocial risk factors, the authors explain, including “high school and family demanding with perfectionism features, the sudden death of a parent, a history of bullying, and gender dysphoria.” One child dropped out of school.

When re-evaluated by a pediatrician and a child neuropsychiatrist, the diagnosis for 6 of the 7 children was changed from chronic Lyme disease to a psychopathological disorder, mainly somatic symptom disorder.

Peri and colleagues ruled out Lyme disease because of “nonspecific symptoms” and the absence of a positive IgG Western blot test. The two positive IgM tests were assumed to be false positives.

The authors did not report whether the children who were re-diagnosed with somatic symptom disorder improved with treatment.

The remaining 19 children admitted for Lyme disease apparently did not suffer from somatic symptom disorder.

Editor’s note: The authors conclude that “like adults, children and adolescents labeled as affected by [chronic Lyme disease] may have a psychopathological disorder.” Unfortunately, too many patients with persistent symptoms of Lyme disease are dismissed and labeled as having aches and pains caused not by an infectious pathogen but by a psychiatric condition.

  1. Peri, F., et al. (2019). “Somatic symptom disorder should be suspected in children with alleged chronic Lyme disease.” Eur J Pediatr 178(8): 1297-1300.

4 Replies to "Dismissing chronic Lyme disease for somatic symptom disorder diagnosis"

  • .........
    09/01/2019 (6:28 am)

    Thank you for posting the content of the article. I saw the abstract on PubMed, and, cringed. Children are powerless to fight back subjective psychiatric diagnoses such as SSD, and, I fear that their parents will be pathologized for doing so in their continued efforts to find appropriate/effective care for their children. SSD label and treatment is crazy-making in and of itself when the guiding clinical assumption is that you only think you have Lyme disease. You are to be re-educated about that through cognitive behavioral therapy. You wouldn’t be sick at all if you could let go of the idea that you are sick with Lyme (despite medical care providers treating for Lyme). People in a helping profession invalidating serious illness and struggle that, with almost any other disease, would be met with compassion and validation, is a special kind of cruelty/rejection reserved for Lyme patients. I believe it to be psychologically harmful and a contributing factor to the development of an overlay of psychiatric/psychological issues in some Lyme patients, and, not to be underestimated as a factor contributing to suicide in Lyme patients (as addressed by Dr. Bransfield?). Outright rejection, and, sometimes, ridicule, by the medical establishment, when one is really really ill, is crushing. You aren’t worth basic human regard for your suffering–is what it can feel like when you are already on your knees from the illness trying to dig your way through the process of trying to get help. Countless tears have been shed in medical facility parking lots after humiliating appointments with doctors who think they have Lyme all figured out even though science hasn’t.

  • Jessica Bedrinana
    08/30/2019 (9:17 pm)

    So sad. At age 9, after having fatigue, tremendous pain and other obvious physical symptoms (rashes, hives, joint swelling, high ANA’s)- after being misdiagnosed with systemic lupus, the children’s hospital diagnosed my dd with somatoform d/o, told us to ignore her symptoms, see a psychiatrist and put her on Zoloft! UNBELIEVABLE!! She actually had Lyme with multiple coinfections, which caused her PANS. Four years later, after 3 years of tx, she is a beautiful, smart, strong, motivated girl in the honor society. So grateful for the Lyme and PANS communities! 💚

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