Morgellons disease (MD) is a rare disorder characterized by the presence of fibers underneath, embedded in, and erupting from unbroken skin or slow-healing sores. Some people with the condition also experience a sensation of crawling, biting, and stinging on and in their skin.
These symptoms can be very painful. They may interfere with your daily activities and the quality of your life. The condition is rare, poorly understood, and somewhat controversial. The uncertainty surrounding the disorder makes some people feel confused and unsure of themselves and their doctor. This confusion and lack of confidence can lead to stress and anxiety.
Over 14,000 families are affected by MD according to the Morgellons Research Foundation (MRF). In a study by the Centers for Disease Control and Prevention (CDC) that included 3.2 million participants, the prevalence of MD was 3.65 cases per 100,000 participants. The same study showed MD is most often seen in white, middle-aged women. Another study showed that people are at a higher risk for MD if they:
- have Lyme disease
- were exposed to a tick
- have blood tests that indicate you were bitten by a tick
- have hypothyroidism
Most research since 2013 suggests MD is spread by a tick, so it is unlikely to be contagious. People who don’t have MD and live with family members that do rarely get symptoms themselves.
The fibers and skin that are shed may cause skin irritation to others, but can’t infect them.
The most common symptoms of MD are the presence of small white, red, blue, or black fibers under, on, or erupting from sores or unbroken skin and the sensation that something is crawling on or under your skin. You may also feel like you’re being stung or bitten.
Other symptoms of MD are similar to those of Lyme disease, and may include:
- joint aches and pains
- loss of short-term memory
- difficulty concentrating
MD is controversial because it is poorly understood, its cause is uncertain, and research on the condition has been limited. In addition, it’s not classified as a true disease. For these reasons, MD is often considered a psychiatric illness. Although recent studies seem to show MD is a true disease, many doctors still think it is a mental health issue that should be treated with antipsychotic medication.
Even the fibers are controversial. Those who consider MD a psychiatric illness believe that the fibers are from clothing. Those who consider MD an infection believe that the fibers are produced in human cells.
The condition’s history has also contributed to the controversy. Painful eruptions of coarse hairs on the backs of children was first described in the 17th –century, and called “morgellons.” In 1938, the skin-crawling feeling was named delusional parasitosis, meaning the false belief that your skin is infested with bugs.
The erupting skin fiber condition reemerged in 2002. This time, it was associated with the sensation of crawling skin. Because of the similarities to the earlier emergence, it was called Morgellons disease. But, because it occurred with the skin crawling sensation and the cause was unknown, many doctors and researchers called it delusional parasitosis.
Probably due to self-diagnosis after searching the internet, the number of cases increased significantly in 2006, especially in California. This initiated a large CDC study. The results of the study were released in 2012 and showed that no underlying cause, including infection or bug infestation, was found. This reinforced the belief in some doctors that MD was actually delusional parasitosis.
Since 2013, research from MJ Middelveen and colleagues suggests an association between MD and the tick-borne bacteria, Borrelia burgdorferi. If such an association exists, this would support the theory that MD is an infectious disease.
The appropriate medical treatment for MD is not yet clear, but there are two main treatment approaches based on what your doctor thinks is causing the problem.
Doctors who think MD is caused by an infection may treat you with several antibiotics for a long time. This may kill the bacteria and heal the skin sores. If you have anxiety, stress, or other mental health problems, or if you develop them from coping with the MD, you may also be treated with psychiatric medications or psychotherapy.
If your doctor thinks your condition is caused by a mental health problem, you may be treated with psychiatric medications or psychotherapy alone.
Unexpectedly getting a psychiatric diagnosis when you believe you have a skin disease can be devastating. You may feel you’re not being heard or believed or that what you’re experiencing isn’t important. This can worsen your current symptoms or even lead to new ones.
To get the best treatment results, establish a long-term relationship with a doctor who takes the time to listen and is compassionate, open-minded, and trustworthy. It is also important that you be open-minded about trying different treatments, including visiting a psychiatrist or psychotherapist if recommended.
Lifestyle and home remedy recommendations for people with MD are easily found on the internet, but their effectiveness and safety can’t be guaranteed. Any new recommendation you are considering should be thoroughly researched before use.
In addition, there are many websites selling creams, lotions, pills, wound dressings, and other treatments that are often expensive but of questionable benefit. These products should be avoided unless you know they are safe and worth the cost.
It is natural to look at and touch your skin when it is irritated, uncomfortable, or painful. Some people begin to spend so much time looking and picking at their skin that it affects their quality of life and leads to anxiety, isolation, depression, and low self-esteem.
Repeatedly scratching or picking at your sores and scabs, crawling skin, or erupting fibers can cause bigger wounds that become infected and won’t heal. If the infection moves into your bloodstream, you can develop sepsis. This is a life-threatening infection that needs to be treated in the hospital with strong antibiotics.
Try to avoid touching your skin, especially open sores and scabs. Apply an appropriate dressing on any open wounds to prevent infection.
Because so much is unknown about MD, it can be hard to cope with the condition. The symptoms may seem strange to people who do not know about or understand them, even to your doctor. People with MD may worry that others think it’s “all in their head” or that no one believes them. This can leave them feeling afraid, frustrated, helpless, confused, and depressed. They may avoid socializing with friends and family due to their symptoms.
Using resources such as support groups can help you cope with these issues if they occur. Support groups can help you understand what is happening and give you the opportunity to talk about it with others who have been through the same experience. They’ll also help you get accurate information about current research on the cause of your condition, and how to manage it. With this knowledge, you can educate others who may not know about MD, so they can be more supportive and helpful to you.