Morgellons Disease and Lyme: What the Research Shows

Quick answer

Morgellons is a condition in which people report fibers or threads coming from the skin, along with sores and crawling or stinging sensations. A large CDC-led study published in 2012 found no infection or parasite as a cause, and most fibers tested were cellulose, likely from cotton. A small group of researchers proposes a link to Lyme bacteria, but that idea remains contested.

What people experience

People who describe themselves as having Morgellons usually report a mix of skin and whole-body symptoms. Mayo Clinic and the 2012 study describe:

• Skin sores and rashes that itch intensely and can be slow to heal.
• Fibers, threads or specks that people see in or on their skin, sometimes described as black, stringy material.
• Crawling, stinging or biting sensations on or under the skin.
• Fatigue, trouble concentrating and low mood. In the CDC study, more than half of participants rated their overall health as fair or poor.

These symptoms are real experiences, and they can take over daily life. The open question is what causes them, not whether people are suffering.

What the CDC study found

Because of rising public concern, CDC led an investigation with Kaiser Permanente Northern California. The results were published in PLoS ONE in January 2012 (Pearson and colleagues). Researchers identified 115 people who reported fibers or other material coming from the skin plus sores or disturbing skin sensations. Key findings, stated as the authors reported them:

• It was rare. About 3.65 cases per 100,000 health plan members, with no geographic clustering.
• Most people affected were middle-aged white women. About three in four participants were female.
• No infection was found. Tests found no parasites or mycobacteria. Lyme disease blood tests were mostly negative or only weakly positive. Bacteria seen in some sores fit with ordinary secondary infection.
• Fibers were mostly cellulose. Most materials analyzed were cellulose consistent with cotton, and some contained dyes or nylon. The authors suggested clothing or other environmental sources.
• Sores looked like scratching or irritation. About 40 percent of skin biopsies showed changes from scratching or chronic irritation; the most common finding overall was sun damage.
• Health and thinking were affected. Many participants had trouble with attention or memory on testing, and many reported a high number of body symptoms.

The authors concluded that no common medical or infectious source was found and that the condition resembled more commonly recognized conditions such as delusional infestation. They also stressed that it was associated with significantly reduced quality of life.

The proposed Lyme link (contested)

A small research group, led by Marianne Middelveen and Raphael Stricker, has published studies arguing that Morgellons is a physical illness tied to Borrelia, the spirochete bacteria that cause Lyme disease. In a 2015 study in BMC Dermatology, they examined 25 people chosen because they had visible fibers. They reported finding Borrelia by DNA tests or staining in 24 of them, and described the filaments as made of keratin and collagen from the body’s own cells rather than textiles.

These findings are worth knowing about, but they have important limits:

• The study was small, and people volunteered rather than being randomly selected.
• Results differed between laboratories, and the authors acknowledged that their DNA methods were not standardized.
• Only 2 of the 25 patients met CDC’s surveillance criteria for Lyme disease.
• The larger CDC-led study did not find evidence of infection, and dermatology references such as DermNet state that infection theories, including Borrelia, are not supported by evidence.

So for now, a Lyme cause for Morgellons is a hypothesis from a small number of studies, not an established fact. If you have had a tick bite or symptoms of Lyme disease, that deserves its own evaluation with standard testing. See our guides to the Lyme disease test and tick-borne co-infections.

How dermatology views it

Most dermatologists consider Morgellons a subtype of delusional infestation. That term describes a firmly held belief of being infested when tests do not find an infestation. Hearing this can feel upsetting, so it helps to know what it does and does not mean:

• It does not mean your itching, pain or sores are imagined. The sensations and skin damage are real.
• Doctors first check for other causes, such as true infestations like scabies, skin diseases that cause chronic itch, medication or substance effects, and other medical problems. DermNet describes skin scrapings, biopsies and blood tests when the picture is unclear.
• Care usually focuses on healing the skin, easing itch and treating any secondary infection, along with support for sleep, anxiety, low mood or distressing thoughts. Mayo Clinic notes this can include mental health care and medicines your clinician may discuss with you.

DermNet notes that a strong, trusting relationship with the care team and a team-based approach tend to give the best results, and that many people improve with treatment.

About “Morgellons pictures”

Many people search for Morgellons pictures to compare with what they see. We do not show photos here. Close-up images of fibers or sores online are often unlabeled, unverified or of materials never lab-tested, and comparing your skin to them can increase worry without answering what is going on. A clinician who examines your skin in person, and sends samples for testing when needed, can give you far more useful information than any picture.

Why many patients feel dismissed

People with Morgellons symptoms often describe going from doctor to doctor. Some reasons this happens:

• Standard tests often come back normal, which can feel like being told nothing is wrong.
• The leading medical explanation involves mental health, and people may feel this ignores their physical suffering.
• Visits can be short, and the symptoms are complex.

Mayo Clinic notes that some studies suggest using the name “Morgellons disease” may carry less stigma and help build a better relationship between patients and doctors. Whatever the cause turns out to be, you deserve to be listened to, examined carefully and treated with respect.

Getting compassionate care

1. Look for a clinician who listens. Mayo Clinic suggests finding someone who acknowledges your concerns, does a thorough exam and talks through options. A dermatologist is a good starting point; a team of specialists can help.
2. Bring a short symptom history. When symptoms began, what makes them better or worse, medicines and supplements you take, and any tick bites or travel. Our guide to preparing for a doctor visit can help.
3. Ask about skin care for sores. Healing broken skin and controlling itch can reduce pain and infection risk.
4. Take care of your mood and sleep, too. Treating anxiety, depression or poor sleep is part of good care, not a sign anyone thinks you are making things up. Our Lyme and mental health guide has more.
5. Be cautious with unproven treatments. There is no proven treatment specifically for Morgellons. Be wary of products or long antibiotic courses sold as a cure.

Beating a long illness is something we do together. For more on living well with ongoing symptoms, see Step 6 of How to beat Lyme.

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