What is Morgellons disease

Morgellons disease is an uncommon, poorly understood, controversial and unexplained skin condition, characterized by multicolored filaments or fibers that lie under, are embedded in or project from skin or other particles emerging from skin sores ¹. Morgellons disease is a debilitating, painful and life impacting condition consisting of slow-healing skin lesions, overwhelming fatigue, gastrointestinal disturbances and an array of neurological deficits ². People with Morgellons disease often report feeling as if something were crawling on or stinging their skin. Patients with Morgellons disease may shed unusual appearing particles from the skin described as fibers, sand or seed-like, black specks, or crystalized particles ². Some doctors, however, recognize Morgellons disease as a delusional infestation and treat it with cognitive behavioral therapy, antidepressants, antipsychotic drugs and counseling. Others think the symptoms are related to an infectious process in skin cells. Further study is needed ³.

The distinguishing characteristic of Morgellons disease is the presence of microscopic subcutaneous fibers sometimes referred to as filaments within the skin ². Lighted microscopy (60-x minimum) enables the visualization of these unusual fibers, often-colored red, blue, black, white or clear, embedded in open skin lesions as well as their presence beneath intact skin ².

Patients and physicians often misinterpret Morgellons symptoms as being parasitic in origin but researchers concur that no parasites are involved with the etiology of Morgellons. It has also been determined that there are no fungal components to the cause of Morgellons disease ².

Borrelia, a spirochetal bacterium, has been detected in all Morgellons study subjects so far. Borrelia is detected by multiple methods in abundance within Morgellons skin lesions including culture. Other bacteria commonly found in some but not all Morgellons skin lesions include H. pylori, Bartonella and Treponema denticola ².

Research has determined that the filaments and shed materials are products of epithelial cells and are composed of collagen and keratin. Filaments can often be visualized stemming directly from cells and a retained nucleus can often be visualized at the base of the filament. The coloring of the filaments is not well understood but research has shown that the blue filaments contain granules of melanin.

Although Morgellons disease was initially considered to be a delusional disorder or subtype of delusion of parasitosis ⁴, recent studies have demonstrated that Morgellons disease is associated with tickborne infection, that the filaments are composed of keratin and collagen, and that they result from proliferation of keratinocytes and fibroblasts in epithelial tissue ¹. Culture, histopathological and molecular evidence of spirochetal infection associated with Morgellons disease has been presented in several published studies using a variety of techniques ¹. Spirochetes genetically identified as Borrelia burgdorferi sensu stricto predominate as the infective agent in most of the Morgellons skin specimens studied so far ¹. Other species of Borrelia including Borrelia garinii, Borrelia miyamotoi, and Borrelia hermsii have also been detected in skin specimens taken from Morgellons disease patients. The optimal treatment for Morgellons disease remains to be determined ¹.

The distinguishing feature of Morgellons disease is the appearance of skin lesions with filaments (fibers) that lie under, are embedded in, or project from skin (Figures 1 and ​2). Filaments can be white, black, or brightly colored ⁵. Furthermore, Morgellons disease patients exhibit a variety of manifestations that resemble symptoms of Lyme disease, such as fatigue, joint pain, and neuropathy ⁶. A study found that 98% of Morgellons disease subjects had positive Lyme disease serology and/or a tickborne disease diagnosis ⁶, confirming the clinical association between Morgellons disease and spirochetal infection. Conversely, 6% of Lyme disease patients in an Australian study were found to have Morgellons disease ⁷.

The similarity between Morgellons disease and an animal disease, bovine digital dermatitis, an acknowledged spirochetal infection that is associated with ulcerative lesions exhibiting keratin projections, was previously explored ⁵. Treponemal spirochetes are the primary etiologic agents of bovine digital dermatitis ⁸. A causal relationship between spirochetal infection and filament formation was confirmed by duplication of the clinical disease via experimental infection with pure cultured treponemes ⁹. This prompted further investigation into the possibility of a spirochetal etiology for Morgellons disease to discover if a similar disease process occurred at the cellular level ¹⁰.

Figure 1. Morgellons disease

Footnote: (A) Skin lesions on the hand of a Morgellons disease patient. (B) Skin lesions on the buttocks of a Morgellons disease patient.

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Figure 2. Multicolored fibers in Morgellons disease skin lesion (400× original magnification)

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What causes Morgellons disease

The research on Morgellons disease by multiple groups over decades has yielded conflicting results. Multiple studies report a possible link between Morgellons disease and infection with Borrelia spirochetes.

These results contradict an earlier study by the Centers for Disease Control and Prevention (CDC) ¹¹, which concluded that Morgellons disease isn’t caused by an infection or parasites. The CDC study of 115 people with Morgellons disease ¹¹, which the CDC refers to as an unexplained dermatopathy, showed that most of the fibers in the skin wounds were cotton. The CDC report noted that Morgellons disease is most often seen in middle-aged white women, and its symptoms are very similar to those of a mental illness involving false beliefs about infestation by parasites (delusional infestation).

Small research studies have tried to determine the cause and effective treatment for Morgellons disease. But there is still no proven guidance on diagnosis and treatment. Further research is needed.

Common attitudes of health professionals toward Morgellons disease include:

• Thinking that Morgellons disease is a specific condition that needs to be confirmed by research
• Thinking that signs and symptoms of Morgellons disease are caused by another condition, often mental illness
• Not acknowledging Morgellons disease or reserving judgment until more is known about it

Some people who suspect they have Morgellons disease claim they’ve been ignored or dismissed as fakers. In contrast, some doctors say that people who report signs and symptoms of Morgellons disease typically resist other explanations for their condition.

Histopathology of Morgellons disease

Histological studies on Morgellons disease tissue show that Morgellons disease filaments are not textile fibers. They are biofilaments of human cellular origin produced by epithelial cells and stem from deeper layers of the epidermis, the upper layers of the dermis, and the root sheath of hair follicles ¹². Histological studies established that these filaments are predominantly composed of collagen and keratin ¹⁰ and are nucleated at the base of attachment to epithelial cells ¹⁰, thus demonstrating human cellular origin. Staining of embedded filaments with Congo red resulted in apple-green birefringence suggestive of an amyloid component, although this remains to be confirmed by more specific studies (unpublished data). Staining of embedded filaments with calcofluor-white produced negative results, demonstrating that filaments are not cellulose as found in cotton, linen, or other plant-based textile fibers, or chitin as found in fungal cells and insect exoskeletons (unpublished data).

A preliminary study using scanning electron microscopy (SEM) showed hairlike scales on a blue filament, suggesting that at least some Morgellons disease fibers are hairs ¹². The blue coloration of some fibers was first determined to be the result of melanin pigmentation as shown by positive Fontana Masson staining ¹⁰. An independent study concurred that embedded blue fibers in an Morgellons disease specimen (supplied by the authors of this paper) were not textile fibers ¹. Scanning electron microscopy revealed that the blue fibers were microscopic hairs with cuticular scaling, and transmission electron microscopy (TEM) revealed darkly stained melanosomes that were not organized, a finding consistent with human hairs (Shawkey Morgellons disease, unpublished data, 2013) ¹.

Microspectrophotometry reflectance data on fibers were consistent with patterns of pigmented tissues. Raman spectroscopy ¹³ on two separate blue fibers showed relevant peaks that were indicative of carbamate compounds and melanin aromatic rings (Shawkey Morgellons disease, unpublished observation, 2016) ¹. Hence, independent studies using different methodologies provided evidence that Morgellons fibers are hairlike extrusions and that the blue coloration is the result of melanin pigmentation. Although the mechanism for coloration of red fibers is not yet understood, there are no known textile fibers colored by blue melanin pigmentation ¹⁰.

Association of Morgellons disease with Borrelia infection

Borrelia spirochetes have repeatedly been detected in Morgellons disease skin and tissue samples ¹. Initial studies confirmed the presence of Borrelia burgdorferi sensu stricto (Bb ss) spirochetes within dermatological tissue removed from Morgellons disease lesions of four North American patients ¹⁴. A subsequent study reported the detection and identification of Borrelia garinii in Morgellons skin samples obtained from an Australian patient ¹⁵. A larger study subsequently reported the detection of Borrelia spirochetes in 25 Morgellons disease subjects ¹⁶. Detection of Borrelia DNA by polymerase chain reaction (PCR) followed by Sanger sequencing in two independent laboratories determined that the Borrelia spirochetes detected in these studies were predominantly Bb ss, but Borrelia garinii and Borrelia miyamotoi were also reported. More recently, studies of Morgellons disease specimens in two additional laboratories have detected Borrelia DNA of three Borrelia spp., Bb ss, Borrelia garinii, and Borrelia hermsii ¹⁷. The fact that four different laboratories have been able to detect Borrelia DNA in Morgellons specimens shows that these findings are reproducible.

Morgellons disease and psychiatric diagnoses

Although Morgellons disease may result from an infectious process, there may be a psychiatric component as well, and some (but not all) Morgellons disease patients exhibit neuropsychiatric symptoms. In a study of 25 Morgellons patients, 23 had prior psychiatric diagnoses including bipolar disorder, attention deficit disorder, obsessive-compulsive disorder (OCD), and schizophrenia ¹⁸. The fact that Morgellons disease patients may show neuropsychiatric symptoms complicates the diagnosis and explains why some health care providers consider Morgellons disease to be a delusional disorder. To further complicate matters, some patients with Morgellons disease who do not exhibit psychiatric abnormalities have been misdiagnosed with other conditions such as lichen sclerosus or prurigo nodularis.

Furthermore, lack of scientific knowledge has led patients to interpret the physical presence of dermal filaments and symptoms of formication as parasitic infection. In these cases, the false belief of parasitic infestation is not genuinely delusional because patients are in fact misinterpreting symptoms caused by aberrant production of human biofibers. Furthermore, we find that electrostatic energy and mechanical energy can cause movement of filaments, interpreted by some patients as the movement of a living organism, and small insects such as fruit flies can adhere to open lesions, leading some patients to believe they are infested. If such patients do have a psychiatric condition such as OCD, then the false belief can be intensified or reinforced.

Hypothetically, some patients with delusional disorders could mistakenly believe they have Morgellons disease. In addition, in our experience some Lyme disease patients exhibit crawling or stinging sensations, or can have ulcerative lesions – without developing associated dermal filaments. The overlap of mental illness, Lyme disease, and Morgellons disease highlights the explicit need for a universally accepted clinical definition of Morgellons disease. The following case definition for Morgellons disease has been proposed: a somatic Lyme-like illness associated with spontaneously appearing, slowly healing, filamentous and ulcerative skin lesions. The key diagnostic criterion is colored, white, or black filaments protruding from or embedded in skin. However, because there is an overlap of Lyme disease, Morgellons disease, and mental illness with a spectrum of different symptoms, we recommend that Lyme disease be considered in the differential diagnosis of patients with Lyme-like symptoms in conjunction with formication with or without ulcerations.

Stages of Morgellons disease

In a recent publication ¹⁶, Middelveen and colleagues proposed a clinical classification scheme that reflects the duration and location of Morgellons disease lesions:

1. Early localized: lesions/fibers present for less than three months and localized to one area of the body (head, trunk, extremities).
2. Early disseminated: lesions/fibers present for less than three months and involving more than one area of the body (head, trunk, extremities).
3. Late localized: lesions/fibers present for more than six months and localized to one area of the body (head, trunk, extremities).
4. Late disseminated: lesions/fibers present for more than six months and involving more than one area of the body (head, trunk, extremities).

As noted in that article, the classification scheme provides a medical framework that should help to validate and standardize the diagnosis of Morgellons disease. Further studies are needed to determine whether this classification will have therapeutic and prognostic significance for Morgellons disease patients ¹⁶.

Morgellons disease symptoms

People who have Morgellons disease report the following signs and symptoms:

• Skin rashes or sores that can cause intense itching*
• Crawling sensations on and under the skin, often compared to insects moving, stinging or biting
• Fibers, threads or black stringy material in and on the skin
• Spontaneously–appearing, slow-healing lesions*
• Seed-like objects/ granules and black specks on/in skin
• Fuzz balls” on/in intact skin
• Fine, thread like colored fibers beneath and/or extruding from the skin
• Life altering fatigue
• Neurological impairment
• Difficulty concentrating
• Short-term memory loss
• Depressed mood
• Visual and hearing changes
• Brain fog and diminished higher cognitive abilities
• Hair loss
• Gastrointestinal changes
• Muscle aches and joint pain
• General malaise; intense, life-impacting pain
• Dental deterioration
• Sleep disturbances
• Psychiatric manifestations can include anxiety, depression, new onset of panic attacks, changes in behavior and personality. Some patients have been diagnosed with OCD, bipolar disorder and even delusional disorders can result if left untreated.

*It is important to note that some patients have no lesions, but do have visible fibers within or protruding from unbroken skin when seen with a lighted, handheld microscope at 60x – 100x. Some patients do not experience the intense itching.

The intense itching and open sores associated with Morgellons disease can severely interfere with a person’s quality of life.

The signs and symptoms linked to Morgellons disease can be distressing. Even though health professionals may disagree about the nature of the condition, you deserve compassionate treatment. To manage your signs and symptoms:

• Establish a relationship with a caring health care team. Find a doctor who acknowledges your concerns, does a thorough examination, talks through treatment options with you and works with a multidisciplinary team.
• Be patient. Your doctor will likely look for known conditions that point to evidence-based treatments before considering a diagnosis of Morgellons disease.
• Keep an open mind. Consider various causes for your signs and symptoms and discuss your doctor’s recommendations for treatment — which may include long-term mental health therapy.
• Seek treatment for other conditions. Get treatment for anxiety, depression or any other condition that affects your thinking, moods or behavior.

Morgellons disease treatment

Since a clinical classification of Morgellons disease has not been universally accepted, optimal treatment for Morgellons disease remains unsettled ¹. Nevertheless, several therapeutic principles have emerged: 1) the earlier the treatment is initiated in the course of Morgellons disease, the better the outcome appears to be; 2) treatment should be aimed at the underlying tickborne disease; 3) prolonged combination antibiotic therapy may be necessary to eradicate dermopathy; and 4) antiparasitic therapy may be useful in some patients with Morgellons disease. At this point, the most logical treatment is supported by the guidelines of the International Lyme and Associated Diseases Society ¹⁹. Although treatment with antipsychotic agents has been proposed for patients with neuropsychiatric symptoms of Morgellons disease, this treatment generally fails without concomitant therapy of the underlying tickborne disease ¹⁵. Additional approaches with agents such as dapsone merit further study ²⁰.

Summary

In summary, Morgellons disease is an emerging dermopathy that is associated with Borrelia infection, and the growing number of Morgellons disease cases reflects the increase in tickborne diseases around the world ¹. Although some medical practitioners erroneously consider Morgellons disease to be caused by a delusional disorder, studies have shown that Morgellons disease is a somatic illness that appears to be triggered by Borrelia infection ¹. The optimal treatment for Morgellons disease remains to be determined ¹.

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