Morgellon’s Disease: Infection or delusion

It’s a common, often-repeated theme in medical tv dramas over the years. The subject of the episode suffers from some mysterious, debilitating illness, and no one can diagnose the cause. Typically, many suspect the subject’s condition is psychosomatic, meaning, basically, it’s all in their head. (Naturally, the brilliant protagonist is able to arrive at a solution.) This is not a far-fetched scenario: the existence of many strange diseases were initially questioned. Those afflicted were often accused of “making it all up.” This is sometimes a response by medical professionals when presented with a problem for which they don’t have an answer.

What follows concerns a disease so strange, for years it was not to be believed…..quite literally. It was first described in the 1700s, so it cannot be considered a new illness. An especially fascinating part of this story is how long it took for science to figure out what was going on. For the longest time, sufferers of this disease were told, you guessed it, this disease was actually “all in their head”. Many publications in fact still consider this a psychosomatic disease. Not familiar with this term? Yes, it means it’s a psychiatric problem, and thus, all a delusion.

This particular condition, called Morgellons disease, has to be considered one of the strangest ever. A diagnostic characteristic is the development of open sores from which tiny filaments protrude. These lie under, are embedded in, or project from the skin, and are frequently described as being colored. Various reports have described them as white, black, blue, or some other bright color. The sufferer typically describes a crawling sensation, as though bugs are on or under their skin. Intense, severe itching is also generally experienced.

The first term for this disease was acrophobia, first seen in the literature in 1674. Later reports coined it delusions of parasitosis. Some reports stated one of the keys to diagnosing this was the “matchbox sign,” referring to the small box the patient would often present with, containing things that they claimed to have pulled from their wounds. These individuals were often noted to have actual “coarse hairs” protruding from these open sores. They often report being able to pull fibers or plastic out of their wounds. One of the first physicians to report on the disorder found that many of his syphilis patients also had the “crawling” sensations. He believed that the sensations of movement was possibly related to an infection produced by a spirochete, a type of bacteria.

Systemic symptoms are common, but mental changes are also frequently seen. Difficulty concentrating and short-term memory loss are often noted, as is the finding of depression. The intense itching and open sores associated with Morgellons disease can severely interfere with a person’s quality of life. (Sounds like a rather depressing condition: perhaps this symptom is a natural consequence of living with this condition and having no one believe you.)

Despite the evidence, some doctors continue to believe the condition is a delusional infestation and treat it with cognitive behavioral therapy, antidepressants, antipsychotic drugs and counseling. It is often recommended that Lyme’s be considered in the differential diagnosis of patients who have Lyme-like symptoms in conjunction with formication, with or without the crawling sensation, with or without ulcerations. Although Morgellon’s may result from an infectious process, there may be a psychiatric component as well, since some (though not all) patients exhibit neuropsychiatric symptoms.

Could it simply be that living with this disease, and the associated symptoms, “drives one crazy”? This is more likely considering these people have been told repeatedly their symptoms are a delusion. A psychiatric diagnosis is difficult to understand since often the sores are in places the sufferer could not possibly reach. Indeed, the latest evidence indicates this is not a psychosomatic condition at all. Sophisticated laboratory techniques have demonstrated signs of an infectious process occurring inside skin cells.

A technique termed microspectrophotometry, when performed on these fibers, consistently find pigmented tissues. Spectroscopy on blue fibers shows evidence that indicates melanin, the pigment produced by certain skin cells. Hence, independent studies using different methodologies provide evidence that Morgellons fibers are hair-like, extruded from the skin, and that the blue coloration is the result of melanin pigmentation. Although the mechanism for these fibers is not yet understood, there are no known textile fibers colored by blue melanin pigmentation.

A variety of evidence shows that Morgellon’s has many similarities to Lyme disease, a disease resulting from an infection with a spirochete. Perhaps the most important is they both result from a bacterial infestation. Systemic symptoms of Morgellons include fatigue, joint pain, and neuropathy, all common to Lyme disease. A recent study revealed 98 percent of Morgellon subjects had laboratory findings positive for a tickborne disease, confirming the association between this and other spirochetal infection.

As far as treatment, the earlier the better. Treatment should be aimed at the underlying tickborne disease; specifically prolonged combination antibiotic therapy. The general recommendation is to follow the guidelines of the International Lyme and Associated Diseases Society. Is treatment with an antipsychotic agent appropriate? Since this is clearly not “all in their heads,”treating this as a delusion seems irrational. Indeed, studies show this approach generally fails.

In summary, we know Morgellons disease is an uncommon and poorly understood condition, although its incidence is increasing, reflecting an increase in tick-borne infections. It is characterized by the small fibers and particles emerging from skin sores. But for the longest time, it’s existence was controversial, unexplainable. It can now be defined as a Lyme-like, systemic illness associated with spontaneously appearing, slowly healing ulcerative skin lesions, with the characteristic colored filaments.

Some people who suspect they have Morgellons disease claim they’ve been ignored or dismissed as fakers. This can happen when our understanding of some condition is sorely lacking. Although it has a worldwide distribution, this is not a common disease, making diagnosis difficult. Despite the most up-to-date information, some physicians still claim this is all a delusion. If a patient presents with the signs and symptoms of a parasitic disease like this, should they receive a psychiatric evaluation or see an infectious disease specialist? Getting a second or even third opinion may be a wise decision in some cases. The answers aren’t always available, or maybe they aren’t freely provided. Sometimes you have to be your own best health advocate.

Editor’s note: Dr. Conway McLean is a physician practicing foot and ankle medicine in the Upper Peninsula, with a move of his Marquette office to the downtown area. McLean has lectured internationally on wound care and surgery, being double board certified in surgery, and also in wound care. He has a sub-specialty in foot-ankle orthotics. Dr. McLean welcomes questions or comments atdrcmclean@outlook.com.