An Itch You Can't Scratch: 10 Interesting Facts About Morgellons Disease
By Emily Greenstein, APRN, CNP, CWON
I recently presented this topic as a Journal Club presentation for the Association for the Advancement of Wound Care Members. I feel like this is a very important and interesting subject, so I wanted to share it with more people. Morgellons disease (MD) is a disorder that can be considered controversial. One view of it is that the disorder is purely a psychological condition, and the other view is that the disorder is actually a byproduct of another infectious process. My goal is to give you some facts from both sides and allow you to make your own decision.
MD is a disfiguring and perplexing skin condition that can be traced back to France in 1674. The disease originally was referred to as acrophobia but was then later changed to delusions of parasitosis. Patients report itching and things "crawling" under their skin. They often report being able to pull fibers or glitter or plastic out of their wounds. The first person to look into the disease as more than a psychological disorder was Dr. Vie Ekbom. He found that many of his patients who had syphilis had these symptoms of "crawling" and itching. He believed that the sensations of movement were more related to the spirochetal infection.
10 Facts about Morgellons Disease
Now that we know the history of the disease, let us look at some interesting facts about MD:
- One of the diagnosing criteria is the "matchbox sign," meaning that the presenting patient often will bring in a small box or bag of things that they have claimed to pull from their wounds.
- Mary Leito, a biologist and founding member of the Morgellons Research Foundation, noted that patients with these symptoms of MD also tested positive for Lyme disease. Lyme disease is caused by infection with Borrelia, a spirochetal pathogen.
- The American Psychiatric Association DSM-V does not specifically address delusions or parasitosis. They clump it under somatic-type delusional disorders.
- In 2012, the Centers for Disease Control and Prevention (CDC) came out with a statement and protocol for diagnosing and treating delusional parasitosis. They state that one of the mainstays of treatment is the development of a therapeutic relationship with the patient.
- Dermatologists are able to diagnosis this disorder.
- Fiber analysis has shown that the "things removed" from the wounds of patients do not have any textile components. They are composed of keratin and collagen. The glittery flakes have been found to be salt byproducts.
- Several recent studies have found a link between MD and Lyme disease. The spirochetal load in patients with MD is very high and suggests that the fibers are a byproduct of biofilm formation.
- Patients often report systemic manifestations such as fatigue, joint pain, cardiac compilations, cognitive difficulties, and neuropathy. These are all commonly reported signs and symptoms of Lyme disease.
- Based on this information, if the patient presents with these symptoms, treatment is based on whether the patient has a positive test result for Lyme disease. The CDC recommends a prolonged oral regimen including doxycycline, amoxicillin, or cefuroxime axetil.
- Antipsychotic agents are recommended in conjunction with the antibiotics. The recommendation is to start at a low dose and increase it as tolerated. Risperidone has been found to be the most effective. It is also important to advise the patient that these medications will help with the chemical imbalance that is causing the itching and crawling feelings. Many patients with this condition will be offended and try everything to prove that they are not making things up or that they do not need any medications for mental illness.
MD is a difficult disorder to diagnose. Patients who present with signs and symptoms of delusional parasitosis should receive a complete and thorough examination, including tests for spirochetal bacteria. It is interesting to note that in many of these cases in patients with delusional disorders, the idea of MD is put into their heads by friends or the media. Patients often become obsessed with "Googling" their symptoms and trying to prove that they are not making things up about their disorder. That is why it is important to listen to the patient's concerns and create a patient-centered plan of care.
Middelveen MJ, Fesler MC, Stricker RB. History of Morgellons disease: from delusion to definition. Clin Cosmet Investig Dermatol. 2018;11:71–90.
Middelveen MJ, Rasmussen EH, Kahn DG, Sticker RB. Morgellons disease: a chemical and light microscopic study. J Clin Exp Dermatol Res. 2012;3:140.
About the Author
Emily Greenstein, APRN, CNP, CWON is a Certified Nurse Practitioner at Sanford Health in Fargo, ND. She received her BSN from Jamestown College and her MSN from Maryville University. She is certified as an Adult-Gerontology Nurse Practitioner through the American Academy of Nurse Practitioners. She has been certified in wound and ostomy care through the WOCNCB for the past 8 years. At Sanford she oversees the outpatient wound care program, serves as chair for the SVAT committee and is involved in many different research projects. She is an active member of the AAWC and currently serves as co-chair for the Research Task Force and Membership Committee. She is also a working member of the AAWC International Consolidated Diabetic Ulcer Guidelines Task Force. She has been involved with other wound organizations and currently serves as the Professional Practice Chair for the North Central Region Wound, Ostomy, and Continence Society. Emily has served as an expert reviewer for the WOCN Society and the Journal for WOCN. Her main career focus is on the advancement of wound care through evidence-based research.
The views and opinions expressed in this blog are solely those of the author, and do not represent the views of WoundSource, Kestrel Health Information, Inc., its affiliates, or subsidiary companies.