Morgellons Disease: The Skin Disease You’ve Probably Never Heard Of

If you’ve never heard of Morgellons Disease, you’re not alone. It is a skin disorder that is steeped in controversy and mystery. While first identified in 2002, a similar skin ailment was first mentioned in 1674 in a letter by English physician, Sir Thomas Browne in which he referred to “the Morgellons” and described several children as having a skin disorder characterized in part by “harsh hairs” protruding from their skin. Morgellons is a considered a lay term to describe an unexplained set of symptoms primarily involving the skin. It is not currently recognized as a distinct clinical disorder with established diagnostic criteria that are generally accepted by the medical community. In fact, some clinicians consider it purely a manifestation of a psychiatric disorder. Because Morgellons displays characteristics of other, more well-recognized conditions, it is often not the first consideration for diagnosis. But not everyone in the medical community agrees. And, therein lies the problem. So what do we know about Morgellons Disease and what does it have to do with skin picking? When it comes to diagnosis and treatment, a lot.

What Is Morgellons Disease?

Morgellons Disease is an unexplained skin disorder characterized by spontaneously occurring, slow healing lesions on the skin that can ooze, cause intense itching and hair loss. Thread-like fibers appear under the skin and protrude out. The pain is described as coming from the “inside out”. Along with the physical presentation, sufferers experience sensations of crawling, stinging, and biting of the skin. They may pick at their skin to alleviate or try to remove the fibers. People with Morgellons often also experience systemic issues such as fatigue, brain fog, muscle aches, and joint pain, poor sleep, and new-onset panic or anxiety.

Some medical professionals point to the skin picking or scratching as being more akin to a skin picking disorder and not a medical issue, often calling attention to the telltale “tweezer sign”  often associated with excoriation. It is important to note that Morgellons Disease is not the same thing as excoriation or skin picking disorder. They are distinctly different disorders requiring different treatments.

Although not fully recognized by the medical community, the Centers for Disease Control and Prevention (CDC) is currently investigating Morgellons. A 2012 study by the CDC that included 3.2 million participants found the prevalence of MD to be 3.65 cases per 100,000 participants. The Morgellons Research Foundation estimates that more than 14,000 are affected by Morgellons. Those numbers could be much different given the controversy surrounding the disorder. Controversy has arisen over whether the appearance of Morgellons symptoms is a distinct medical/dermatological disorder or a manifestation of a psychiatric disorder, in particular, delusional infestation or delusional parasitosis.

The Diagnostic and Statistical Manual of the American Psychiatric Association (DSM 5) contains specific criteria for the diagnosis of delusional disorders such as delusional infestation. It is defined as a disorder in which individuals have a fixed, false belief that they are infested with a parasite, worms, or other pathogens when none is present. Tactile hallucinations are known as formication, a sensation resembling insects crawling on or under the skin, are often present. One of the key criteria in diagnosing a psychiatric condition is that the disturbance must not be attributable to a medical condition. Herein lies the controversy.

There are two camps in the medical world: those who believe that Morgellons is a legitimate medical condition and those who believe that Morgellons is a self-diagnosed condition resulting from a delusional disorder. Patients believe their self-inflicted lesions contain fibers. As a result, there is no standard approach to care. Does someone see a dermatologist or a psychiatrist? It’s a complicated scenario for the patient who may also have other legitimate medical and psychiatric issues.

What Does the Research Say?

Some research has concluded that Morgellons is most likely caused by delusional infestation or even self-induced. The lesions are considered self-inflicted as a result of “picking”. Morgellons is viewed as within the spectrum of delusions of parasitosis and treated as a delusional disorder rather than a medical condition. Those treatments may include antipsychotic medications.   Many in the medical community have relied on those studies, dismissing the possibility that there is a medical cause for the symptoms.

Others have speculated that Morgellons may be related to bacterial infections and possibly Lyme Disease. New research has found compelling evidence that Morgellons may have their roots in a medical condition. Researchers examined a group of 1000 participants diagnosed with Lyme Disease. Of the 1000 participants, 60 (6%) were diagnosed with Morgellons Disease. All 60 patients (100%) were seropositive for B. burgdorferi, the causative agent of Lyme Disease. What is more compelling is that other tickborne infections were found in these participants as well. These included Babesia spp (62%), Bartonella and Rickettsia (25% each), Ehrlichia (15%) and Anaplasma (10%). Helicobacter pylori was detected in 12% of MD patients. In all, 77% of the people with Morgellons Disease had one or more of these infections. These findings build on previous findings that link bacterial infections to Morgellons.

There has also been increasing attention paid to the fibers that some in the medical community dismiss as psychogenic or self-inserted. Studies have examined these fibers at high magnification (up to 400x) where they can be seen protruding from the skin. Forensic examination concluded that the fibers are not made of any known man-made textile. The black specs that appear on the patient’s skin are actually tightly wound fibers.

Treatment Implications

So, what does this mean for people living with Morgellons Disease and for the clinicians who treat them? The evidence seems clear that Morgellons is not merely a delusional process but in fact, is likely medical in origin, possibly the result of a bacterial infection.

Skin lesions of any type require the care of a medical provider, most likely a dermatologist.  If a person is picking at their skin or complaining of discomfort, it is appropriate to conduct a thorough examination to rule out any medical condition that can be treated before assuming a psychiatric cause. Even then, the lesions should be treated appropriately, in consultation with a psychiatrist if indicated.

People with Morgellons, like many dermatological patients, may have comorbid mental health issues that require psychiatric care. Since dermatologists are most likely to be the first point of care, referral to and coordination with a psychiatrist would be an appropriate part of the plan of care.

Coordination of care means better treatment outcomes for all patients, not just those with complex diagnoses. Whether it’s medical or psychiatric is less important than making sure a person is treated appropriately and comprehensively. The evidence emerging on Morgellons seems to suggest that treatment isn’t either/or but both/and.

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