Treating patients with delusional infestation with Dr. John Koo and Dr. Scott Norton

John Koo, MD, and Scott A. Norton, MD, MPH, join host Lorenzo Norris, MD, for this special edition of the Psychcast. This is a crossover episode with our sister podcast, Dermatology Weekly. Dr. Koo is a psychiatrist and a dermatologist at the University of California, San Francisco. He has no disclosures. Dr. Norton is a dermatologist with the Uniformed Services University of the Health Sciences in Bethesda, Md., and with George Washington University, Washington. He has no disclosures. They are featured in an

Summary

Delusions of infestation are a monosymptomatic hypochondriacal psychosis in which the only delusion present is one of infestation, and patients do not have other symptoms of psychotic spectrum illness. Secondary delusions of infestation may occur in individuals who use drugs, such as methamphetamine or cocaine, or who have a primary psychotic disorder, such as schizophrenia. Delusions of infestation is related to Morgellons disease, which is defined as a skin condition characterized by the presence of “threads” or filaments that patients believe are embedded in their skin and might be accompanied by stinging and itching sensations. Patients with delusions of infestation usually present to a primary care physician or ED with symptoms of abnormal sensations of their skin, including crawling sensations. In addition, patients usually bring personal proof of their condition, such as a small bag of “specimens,” including pieces of lint, threads, or scabs. Some patients also bring in journals detailing the timing and associated factors of their symptoms. Dr. Norton advises that physicians treating the patients with delusions of infestation should mentally prepare themselves against initial bias and set aside time for longer visits or several follow-up visits. Dr. Norton starts with the premise that the patient has an actual infestation or other underlying cause of their pruritus and performs a thorough, full-body exam for dermatologic conditions, and examines the materials patients bring with them using a double-headed microscope – so that he and the patient can look at the specimens together. Dr. Koo often tells patients that they have Morgellons disease because it does not include the stigmatizing term of “delusional.” He reframes Morgellons as an infestation that cannot be cured by internal or external antiparasitic medications. He then pivots away from etiology to validation of their emotions and eventually to treatment. Dr. Koo usually often starts treatment with pimozide because it is an antipsychotic with FDA approval for Tourette syndrome – not schizophrenia. This perceived absence of a connection of the medication to psychiatric illness allows patients to be more open to taking the medication. For primary delusional infestation, Dr. Koo starts with pimozide. The dose, which is daily and taken orally, starts low at 0.5 mg and goes up by 0.5 mg every 2-4 weeks. The aim is to get up to 3 mg per day. Low doses of pimozide and other antipsychotics lead to decreased sensation of itching and formication. Dr. Koo refers to his treatment plan as a “trapezoid-like dosage strategy.” Once he gets the patient to 3 mg, he continues the medication until all the symptoms disappear and then continues the medication for an additional 3 months. Dr. Koo then slowly tapers the dosage over an additional few months. The keys to successful treatment include communicating with patients and working collaboratively with them. This approach builds trust and rapport.

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JAMA Dermatol. 2018 May 1;154(5):615-7. Lepping P et al. J Am Acad Dermatol. 2017 Oct;77(4):778-9. Middelveen MJ et al. Clin Cosmet Investig Dermatol. 2018;11:71-90. Lepping P et al. Acta Derm Venereol. 2020 Sep 16.

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Br J Dermatol. 2012 Aug;167(2):247-51. Wolf RC et al. Neuropsychobiology. 2020;79:335-44. *

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[paulkrois]

As a parent of a son with issues around parasites, these doctors showed great compassion and knowledge of this problem. My son has been collecting samples and would definitely be glad for someone to hear him and listen to his plight. He also is strong in his conviction but with proper skills I would be hopeful they could help him. I only wish they were local doctors.

[ManagingMorgellons]

The doctors literally tell us to keep a journal when we come in to be seen, and then when we present that journal you tell us everything is on our head.

[Helyob.castenelli]

I'm so happy I'm listening to this. I was recently diagnosed with Delusional Parasitosis.😭 I am miserable going through this. I was exposed to fiberglass in my apartment back in February 2022. Almost a year going through this and although my apartment have been cleaned and have had friends come visit and stay over, they do not feel what I feel. I am currently under medication for a month, but don't see a difference. I still itch and still feel dust and rug fabrics hitting my skin and hair..😭😭😭😭😭😭

[Moonbirdskies]

I have a sister dying of this. It’s killing her and the doctors keep putting her on lithium for schizophrenia. So thank you for this video but I’m not understanding the dosage. Are you giving Abilify and rispidal along with pimozide?

[matthewclapp]

I have morgellons how is this not really real?

[lucywang-angelrays]

I had morgellons 2 years. not delusional. Fibers in different length different shape and differnt color constantly come out of my skin. Sometimes can feel fibers twisting under skin. I had blood gene test which cover 17500 pathogen no special finding. I remembered every details since my infection.

[lunabee]

I read the CDCs study start to finish. I doesn’t seem as though they had a problem with participation. It’s a shame. I understand the medical approach makes it difficult to communicate with a patient who expects immediate answers. The testing of these fibers would interest me. Why aren’t we hearing from more specialist who have looked into testing?

[pippy]

Excellent interview & information. Helps me get to the root cause of delusions. Low estrogen causes HIGH dopamine.

[Miss.information]

I’m about to sue dr koo for malpractice this is misinformation

[lunabee]

I think these physicians are not discussing Morgellons. That wouldn’t b an area for them to weigh in on unless they were involved in research. My dad often plays diplomat to a non-science oriented audience. doctors aren’t as good as they think at speaking to patients abt facts😂. I grew up listening to all sorts of specialists, my dads colleagues and their passion is real. They good ones are dedicated to protecting each patient to the best of their knowledge. My mom dealt in mental health and that was another set of expertise all together. I get both sides❤❤