man with ekborn syndrome scratching arm
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Summary: Ekbom syndrome is the false belief that one is infested with some form of parasite or parasites, such as insects or worms.

Key Points:

  • Ekbom syndrome is the informal name for the condition, officially known as delusional parasitosis or delusions of parasitosis.
  • It’s very rare, occurring in about 4.2 people per 100,0000.
  • In the U.S., it’s most often identified as a feature of methamphetamine-induced psychosis, caused by chronic methamphetamine misuse.
  • Treatment can eliminate symptoms in most cases, and is most effective when multimodal and multidisciplinary

Ekbom Syndrome: Important Facts

Experts on Ekbom syndrome and delusional parasitosis define the syndrome as follows:

“Delusions of parasitosis is a condition in which sufferers have a fixed, firm but erroneous belief that they are infested by living organisms such as lice, fleas, fungi, yeasts, worms, and even lizards.”

The medical resource “Delusional Parasitosis: Human Skin Parasites & Delusional Parasitosis published by University of California, Davis (UC Davis) indicates that Ekbom syndrome appears in three forms:

Form 1: Primary delusional parasitosis/delusions of parasitosis.

Develops without a clearly identifiable/verifiable cause:

  • Patients have no other psychiatric condition or disturbance
  • Researchers theorize that increased levels of dopamine in the basal ganglia of the brain, which plays a role in connecting brain areas associated with movement, decision-making, emotion, motivation, and reward, may cause Ekbom syndrome.

Form 2: Secondary functional delusional parasitosis.

Occurs in presence of an underlying psychiatric disorder, such as:

  • Schizophrenia (SCZ)
  • Obsessive-compulsive disorder (OCD)
  • Depression (MDD)
  • Anxiety
  • Bipolar disorder
  • Paranoia

Form 3: Secondary organic delusional parasitosis.

Occurs in presence of an underlying medical disorder/diagnosis, such as:

  • Substance use, substance use disorder (SUD), including:
    • Methamphetamine use, misuse, disordered use
    • Cocaine use, misuse, disordered use
    • Alcohol withdrawal
  • Medical conditions/illnesses:
    • Hypothyroidism
    • Vitamin deficiencies: B12 and folate
    • Diabetes
    • Neuropathy
  • Neurological conditions:
    • Dementia
    • Multiple sclerosis
    • Encephalitis
    • Meningitis
  • Infectious disease:
    • Tuberculosis
    • Syphilis
    • Leprosy
    • Human immunodeficiency virus (HIV)
  • Prescription medication side effects

Those are the known causes of Ekbom syndrome, a.k.a. delusional parasitosis. Experts offer the following insights on the prevalence of Ekbom syndrome:

  • Ekbom syndrome is rare.
  • Experts estimate it occurs in about 4.2 people per 100,000.
  • Around 60% of patients have secondary functional or secondary organic Ekbom syndrome

In the U.S., prevalence of Ekbom syndrome is skewed toward people with methamphetamine use disorder, an outcome of the opioid crisis and associated polysubstance misuse.

That’s the basic information on the causes and prevalence of Ekbom syndrome. Next, we’ll share information on the symptoms of the syndrome and related complications.

Ekbom Syndrome: Symptoms, Consequences, Complications

The resource Delusions of Parasitosis published by DermNet identifies the following symptoms of Ekbom syndrome:

  • Unsubstantiated belief that one is infested with some form of parasite, most often insects of worms
    • Belief that home/living space/car also infested
    • Belief another family member also infested
  • Atypical sensations on/under skin:
    • Itchiness
    • Stinging
    • Biting/being bitten
  • Presence of scratches and ulcerations on skin caused by constant scratching and/or attempts to dig out/remove perceived parasites
  • Visting multiple physicians, specialists, or medical entomologists (experts in skin and other parasites) for confirmation of infestation:
    • Refusal to believe evidence proving absence of infestation
    • Sending/brining ‘samples’ of suspected insects/parasites to doctors
    • Refusal to believe samples are not evidence of infestation
  • Hiring multiple exterminators to confirm infestation
    • Refusal to believe their observations/conclusions re. absence of infestation
  • Exhaustive use of home remedies or hacks from various sources
  • Refusal of prescription medications
  • Intentional exposure to unsafe amounts of cleaning products or pesticides/repellants

Complications associated with Ekbom syndrome include:

  • Anxiety
  • Depression
  • Suicide, associated with escalating anxiety and/or depression
  • Irritated/damaged skin
  • Scars on skin caused by scratching

The consequences of Ekbom syndrome are related to the symptoms and complications associated with the symptoms. The delusional belief in infestation can disrupt relationships and the obsessive nature of the delusion can interfere with work and school. The cumulative effect of the syndrome can lead to self-isolation and escalating mental health problems and associated risks.

Those are the symptoms of the syndrome and related complications. Next, we’ll look at what we know about the diagnosis and treatment of Ekbom syndrome.

How is Ekbom Syndrome Diagnosed and Treated?

The first step in supporting someone who believes they’re infested with a parasite is seek an examination with a trained and qualified medical entomologist and/or parasitologist. These physicians are experts in identifying infestations in humans.

Confirming or ruling out the presence of an infestation is essential.

Once an infestation is ruled out:

  • The fixed belief in the infestation confirms the diagnosis.

Next, experts identify the syndrome subtype:

  • Careful medical exam to exclude common inflammatory dermatosis
    • Microscopic examination of any samples provided by patient
  • Review of medications to rule out medication side effects as cause
  • Review of medical, psychiatric, and substance use history, with a focus on:
    • Medical conditions
    • Neurological conditions
    • Infectious disease
    • Substance use
    • Alcohol withdrawal
  • Medical examinations should include tests that assess:
    • Full blood count
    • Kidney and liver function
    • Thyroid function
    • B12/ferritin levels

If examination and testing rules out medical conditions and actual infestation, but confirm the presence of methamphetamine use, then the syndrome falls under the category of methamphetamine induced psychosis.

Treatment for methamphetamine-induced psychosis includes:

  • Integrated treatment for methamphetamine use disorder
  • Recreational use of methamphetamine is associated with symptoms of psychosis that fade after drug leaves body
  • Chronic methamphetamine use:
    • Can cause psychosis that persists after intoxication in 36% of patients, with most psychotic symptoms receding after one week
    • Can cause persistent, chronic psychosis that last for a month or more in 16% – 26% of patients.

When methamphetamine use causes persistent psychosis in the form Ekbom syndrome, the primary treatment is treatment for methamphetamine use disorder, followed by treatment for primary delusional parasitosis.

Treatment for Primary Delusional Parasitosis, or Ekbom Syndrome With No Clear Cause

Best practices and treatment protocols indicate providers should:

  1. Lead with empathy and compassion for the emotional/psychological distress patient experiences/has experienced
  2. Treat any damage to skin with standard medical treatment
  3. Address possible metabolic imbalances
  4. Discontinue potentially complicating medication
  5. Never affirm delusion and never imply treatment eliminates parasites.
  6. Consistently remind patients that thorough testing never showed evidence of parasites or infestation.
  7. Avoid arguing about parasitic infestation: experts report it never works and patient will not be swayed from delusive beliefs
  8. Use indicated medications:
      • SSRIs if depression is present
      • First generation antipsychotics, such as pimozide. This was previously the first-line treatment. However, due to safety and side effects, second generation antipsychotics may be preferred, with choice dependent upon collaboration between provider and patient.
      • Second generation antipsychotics, including risperidone, olanzapine, quetiapine, and aripiprazole. Lower doses of these medications may be preferred, due the more favorable/acceptable side effect profile.

Those are the evidence-based treatment approaches experts identify as effective in the treatment of Ekbom syndrome. We’ll close this article with a discussion of the prognosis for people with Ekbom syndrome.

Does Treatment for Ekbom Syndrome Work?

Yes.

Evidence indicates that treatment with antipsychotic medication leads to significant symptoms reduction or complete remission of symptoms in 60 to 100 percent of people with Ekbom syndrome. Studies show treatment for at least six months may be necessary for best results. If symptoms recur, experts advise a return to antipsychotic medication.

Finding Help: Resources

If you or someone you know needs professional treatment and support for a co-occurring methamphetamine use disorder (OUD), a.k.a. methamphetamine addiction, and a mental health disorder, or professional treatment and support for Ekbom syndrome related to or independent of methamphetamine addiction, please contact us here at Crownview Co-Occurring Institute. We can help. In addition, you can find support through the following online resources: