Frequently Asked Questions About Morgellons Disease

What is "Morgellons"?

Morgellons Disease (MD) is a multi-system illness uniquely characterized by the formation of unusual fibers within the skin. MD is a debilitating, painful and life impacting condition consisting of slow-healing skin lesions, overwhelming fatigue, GI disturbances and an array of neurological deficits. Patients with Morgellons may shed unusual appearing particles from the skin described as fibers, sand or seed-like, black specks, or crystalized particles.

The distinguishing characteristic of Morgellons Disease (MD) is the presence of microscopic subcutaneous fibers sometimes referred to as filaments within the skin. 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.

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 etiology of Morgellons.

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.

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.


What are the Symptoms?

Signs and symptoms include:

  • Intense itching*
  • Crawling sensations under 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
  • Visual and hearing changes
  • Brain fog and diminished higher cognitive abilities
  • Hair loss
  • GI changes
  • Muscle aches, 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.


    How is Morgellons Disease Diagnosed?

    Unfortunately, many doctors including ER, Dermatologists and Infectious Disease Specialists are grossly unaware of the legitimacy of Morgellons Disease (MD). Generally, little to no assessment of the patient is done, yet they render a diagnosis of Delusions of Parasitosis (DOP). Lab testing and/ or biopsies, if done at all, typically misidentify MD fibers as textile contamination or are misinterpreted to imply patients have caused their own physical symptoms.

    Morgellons Disease (MD) is currently a clinical diagnosis made by knowledgeable medical care providers. Criteria includes visualization of fibers in skin with 60x – 100x lighted microscopy, patient reporting many of the symptoms associated with MD and a thorough physical exam. Refer to published, peer-reviewed paper on PubMed by Dr. Ginger Savely regarding standards of diagnostic criteria for Morgellons Disease. Read it here.

    Anyone who suspects he/she may have Morgellons should check their skin with a hand-held lighted microscope (60x - 100x).These scopes are inexpensive at around $8- $20 on the Internet. A good one is available on our website for $8 and you can purchase it here.


    What is the Test for Morgellons?

    At present, there are no diagnostic laboratory tests specifically targeting Morgellons disease. Recent research findings of Borrelia in skin specimens of patients with Morgellons disease, suggests testing suspect patients for Lyme disease. Unfortunately, there are no tests currently available that are 100% accurate for diagnosing Lyme disease. Both false positive and false negative results can occur, with the latter being far more common.

    Research studies have detected Borrelia in every single Morgellons study subject even though most Morgellons have negative serology for Lyme disease.Ultimately,Lyme Disease is outlined by the CDC as clinical diagnosis to be made by a qualified physician or other healthcare provider based upon symptoms and patient history, with test results used as tools to aid in the diagnosis. Lyme serologic testing at many laboratories fails to detect antibodies at levels high enough to be interpreted as positive by the CDC surveillance criteria. Testing at laboratories specializing in tick-borne diseases is highly recommended. A physician or other Lyme literate qualified healthcare provider must sign a requisition for testing and should be consulted for interpretation of test results. Read more about lab testing here.


    Is it Contagious?

    Researchers have found no evidence for Morgellons being transmitted by casual contact. It is thought that when more than one family member and/or pets are affected it is likely they were exposed to the same vector of Borrelia whether that be ticks, fleas or other biting insects/vectors. Living in a home or going out to public places, eating dinner, giving hugs, holding babies are all safe practices.

    The fibers, black specks, sand-like crystals, etc. are produced by our body's cells in response to the underlying infection. This shed material does not contain living bacteria that could transmit disease.


    How Do People Get Morgellons Disease?

    Published medical literature has demonstrated that Morgellons is closely associated with a spirochetal infection with Borrelia. Multiple metagenomic analyses and molecular studies identified the Borrelia spirochete in every Morgellons study subject.. This bacterium is transmitted when a vector such as a tick bites an individual. It is estimated that 6-10% of Lyme patients develop Morgellons disease. It remains unknown why some Lyme patients develop Morgellons while the majority do not.

    As previously stated, Morgellons is not transmitted via casual contact, but rather via a vector bite. The jury is still out on the possibility of sexual transmission. Researchers have been able to detect and culture Borrelia from seminal and vaginal fluids but the likelihood of transmission remains unknown.


    Will it Affect My Unborn Child?

    Congenital transmission of the disease is, as of now, still undetermined. However, the Borrelia bacteria can be transmitted from mother to child in utero through shared blood. Women with Morgellons disease who become pregnant are advised to seek the care of an LLMD familiar with prenatal management of Borrelia.


    Is this a Parasite?

    We have several groups of researchers looking at Morgellons disease and no evidence for fungi, myasis, insects, worms, bugs, Springtails aka Collembola, or parasites has been found.


    Is there a Cure?

    Though many Internet sites report cures, we unfortunately, have no knowledge of a universal cure that has helped each individual with Morgellons Disease. Each case is unique and response to treatment varies among patients. Many patients report significant improvement and remissions after receiving appropriate antimicrobial treatment targeted toward Borrelia and other associated pathogens.


    What is the Treatment?

    We cannot promote or recommend any specific treatment. As you will read in the RESEARCH section of our website, Borrelia burgdorferi, the causative agent of Lyme disease has been detected in every single Morgellons study subject. Borrelia burgdorferi is a dangerous bacterium which left untreated can affect the heart, brain, skin, gastro-intestinal system, musculoskeletal system and the central and autonomic nervous systems.

    Many medical providers have either not been informed as to the current Morgellons research or are closed minded due to the CDC and the IDSA.

    Treatment is individualized for each person and can take several months to years depending on their response.

    How Can I Find a Doctor to Treat Morgellons?

    This disease is best understood and treated by doctors who treat Lyme disease. They are known as Lyme Literate Medical Doctors (LLMDs) and are knowledgeable in the medical management of Lyme and Morgellons. These are doctors who follow ILADS (International Lyme and Associated Disease Society) guidelines rather than IDSA (Infectious Disease Society of America.

    To find a doctor that is close to where you live, either contact one of your local/state Lyme support groups, or visit one of these websites for physician referral links.

  • Lyme Disease Association
  • International Lyme and Associated Diseases Society(ILADS)
  • Tick Borne Disease Alliance
  • Questions

    Please email info@theCEHF.org with any questions you may have.