Chronic Lyme Disease Misdiagnosed as Somatic Symptom Disorder
Chronic Lyme disease misdiagnosed as somatic symptom disorder remains a concerning pattern in pediatric care. Peri and colleagues reviewed the medical records of children admitted to a hospital in Italy between January 2016 and December 2018.
This case series highlights a broader concern: when persistent symptoms are not fully explained, patients may be labeled rather than thoroughly evaluated.
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. This type of diagnostic dismissal reflects persistent Lyme disease misconceptions that continue to harm patients.
According to the DSM-V, somatic symptom disorder is defined as:
“the presence of nonspecific discomforting somatic symptoms… that seriously undermine children’s daily life… for more than 6 months.”
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.
Their symptoms included headaches, low-grade fever, arthralgias without signs of active inflammation, and fatigue not linked to exertion.
“One patient reported difficulty in walking… and one visual disturbance,” writes Peri.
Four of the children had psychosocial stressors, including family pressure, bereavement, bullying, and gender dysphoria.
When re-evaluated, 6 of the 7 children were re-diagnosed with somatic symptom disorder.
Peri and colleagues ruled out Lyme disease due to nonspecific symptoms and absence of IgG Western blot positivity. The IgM-positive results were considered false positives.
The authors did not report whether these children improved following psychiatric treatment.
The remaining 19 children diagnosed with Lyme disease were not labeled with somatic symptom disorder.
Editor’s note: The authors conclude that children labeled with chronic Lyme disease may instead have a psychopathological disorder. However, the absence of a reliable test to confirm eradication of persistent Lyme disease complicates this assumption. In clinical practice, patients with ongoing symptoms are often dismissed despite limitations in Lyme disease testing and diagnosis.
Too many patients with persistent symptoms are labeled as having psychiatric conditions rather than being fully evaluated for ongoing infection or complex post-infectious illness.
Related Articles:
Don’t confuse somatic symptoms with depression in early Lyme disease
Turning a blind eye on Lyme disease
Study finds misdiagnosis and delayed diagnosis common for Lyme disease patients
Doctors agree Lyme disease patients at-risk for suicide are under-recognized group
References:
- Peri F, et al. Somatic symptom disorder should be suspected in children with alleged chronic Lyme disease. Eur J Pediatr. 2019.
Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.
Symptoms • Testing • Coinfections • Recovery • Pediatric • Prevention
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!
Thanks for sharing an all too common story.
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.
Thanks for sharing your story.