Recommendations dismiss seriousness of Lyme disease in children

tired child with Lyme disease

A recent journal article examining the prevalence of neuropsychiatric symptoms in children with Lyme disease raises several concerns regarding clinicians understanding of the illness in this particular population and their level of empathy. “Unraveling Diagnostic Uncertainty Surrounding Lyme Disease in Children with Neuropsychiatric Illness,” puts forth several recommendations that would appear to do more harm than good.

“Case reports of neuropsychological manifestations of Lyme disease that are of special interest to psychiatrists include: Alice in Wonderland syndrome (sensation that things are getting larger and smaller), Tourette’s syndrome, acute delirium, catatonia, psychosis, and stroke mimics such as aphasia,” writes Koster and Garro in the journal Child and Adolescent Psychiatric Clinics of North America. [1] These reports demonstrate there are atypical presentations of Lyme disease, but the cases are rare.

When it comes to testing, the authors recommend that doctors rely only on the two-tier criteria to diagnose Lyme disease. They advise against using a variety of other tests that don’t meet the two-tier diagnostic criteria. This includes Immunofluorescence staining and Western blot tests without a positive enzyme-linked immunosorbent assay (ELISA).

tired child with Lyme diseaseChildren with persistent symptoms should be told they have post-treatment Lyme disease syndrome, and that treatment is not required, the authors say. This is based on findings from four National Institutes of Health (NIH)-sponsored trials which determined that retreatment with antibiotics provides little benefit, according to Koster and Garro.

However, the authors fail to mention the multiple flaws with those NIH trials. For instance, children were not included, and three of the trials enrolled adults who had been ill for years and already failed previous treatments. Additionally, one of the NIH trials did, in fact, demonstrate an improvement in fatigue symptoms in Lyme disease patients.

[bctt tweet=”More compassionate physicians are needed when treating children with Lyme disease.” username=”DrDanielCameron”]

The authors recommend managing childrens’ symptoms rather than treating with antibiotics. “Manage patients who have post-Lyme disease syndrome with standard symptom-directed pharmacologic and non-pharmacological interventions in a multidisciplinary, empathetic, and evidence-based manner.”

Common complaints, they say, can easily be treated. For example, pain medications (e.g., gabapentin) can be prescribed for neuropathic pain; tricyclic antidepressants can relieve sleep disturbances and SSRI’s can manage mood disorders.

“Clinical psychiatrists are also well equipped to address physical complaints such as malaise, headache, or anxiety with conventional interventions that provide coping skills including cognitive behavioral therapy, mind/body techniques, and recommendations for structured physical activity,” writes Koster and Garro.

Interestingly, the authors do not address whether their proposed pharmacologic and non-pharmacological interventions are effective in an evidenced-based manner in children with Lyme disease.

In fact, there are no well-designed clinical trials to determine if these recommended treatments are actually effective in alleviating symptoms in children with post-Lyme disease syndrome.

The authors also fail to mention the possibility that an active, persistent infection might explain the ongoing symptoms. Post-Lyme disease syndrome, or post-treatment Lyme disease syndrome, imply that the tick-borne infection has been eradicated. Yet there are no validated tests that prove this. Therefore, it would be reasonable to inform patients of this and keep all treatment options open, including antibiotics.


Related Articles:

Lyme disease in children rising in Pennsylvania: An inside look

Preventing unnecessary surgery for children with Lyme arthritis

Case report: Lyme neuroborreliosis more common in children



  1. Koster MP, Garro A. Unraveling Diagnostic Uncertainty Surrounding Lyme Disease in Children with Neuropsychiatric Illness. Child Adolesc Psychiatr Clin N Am. 2018;27(1):27-36.


1 Reply to "Recommendations dismiss seriousness of Lyme disease in children"

  • Colleen
    07/30/2018 (12:04 pm)

    When I saw the recommendations of the working group, I was afraid this exact thing was going to happen.
    They intend to just put us all j to mental hospital and forget us.

Join the Lyme Conversation
(Note: comments are moderated. You will see your comment after it has been reviewed.)

Some html is OK