Essay — From the September 2013 issue

The Devil’s Bait

Symptoms, signs, and the riddle of Morgellons

For Paul, it started with a fishing trip. For Lenny, it was an addict whose knuckles were covered in sores. Dawn found pimples clustered around her swimming goggles. Kendra noticed ingrown hairs. Patricia was attacked by sand flies on a Gulf Coast beach. Sometimes the sickness starts as blisters, or lesions, or itching, or simply a terrible fog settling over the mind, over the world.

For me, Morgellons disease started as a novelty: people said they had a strange ailment, and no one — or hardly anyone — believed them. But there were a lot of them, reportedly 12,000, and their numbers were growing. Their illness manifested in many ways, including fatigue, pain, and formication (a sensation of insects crawling over the skin). But the defining symptom was always the same: fibers emerging from their bodies. Not just fibers but fuzz, specks, and crystals. They didn’t know what this stuff was, or where it came from, or why it was there, but they knew — and this was what mattered, the important word — that it was real.

Illustration by Raymond Verdaguer

Illustration by Raymond Verdaguer

The diagnosis originated with a woman named Mary Leitao. In 2001, she took her toddler son to the doctor because he had sores on his lip that wouldn’t go away. He was complaining of bugs under his skin. The first doctor didn’t know what to tell her, nor did the second, nor the third. Eventually, they started telling her something she didn’t want to hear: that she might be suffering from Münchausen syndrome by proxy, which causes a parent or caregiver to fabricate (and sometimes induce) illness in a dependent. Leitao came up with her own diagnosis, and Morgellons was born.

She pulled the name from a treatise written by the seventeenth-century English physician and polymath Sir Thomas Browne, who described

that Endemial Distemper of little Children in Languedock, called the Morgellons, wherein they critically break out with harsh hairs on their Backs, which takes off the unquiet Symptoms of the Disease, and delivers them from Coughs and Convulsions.

Browne’s “harsh hairs” were the early ancestors of today’s fibers. Photos online show them in red, white, and blue — like the flag — and also black and translucent. These fibers are the kind of thing you describe in relation to other kinds of things: jellyfish or wires, animal fur or taffy candy or a fuzzball off your grandma’s sweater. Some are called goldenheads, because they have a golden-colored bulb. Others simply look sinister, technological, tangled.

Patients started bringing these threads and flecks and fuzz to their doctors, storing them in Tupperware or matchboxes, and dermatologists actually developed a term for this phenomenon. They called it “the matchbox sign,” an indication that patients had become so determined to prove their disease that they might be willing to produce fake evidence.

By the mid-2000s, Morgellons had become a controversy in earnest. Self-identified patients started calling themselves Morgies and rallying against doctors who diagnosed them with something called delusions of parasitosis (DOP). Major newspapers ran features posing some version of a question raised by the New York Times in 2006: “Is It Disease or Delusion?” The Centers for Disease Control and Prevention (CDC) launched a full-scale investigation soon afterward.

In the meantime, an advocacy organization called the Charles E. Holman Foundation started putting together an annual Morgellons conference in Austin, Texas, for patients, researchers, and health-care providers — basically, anyone who gave a damn. The foundation was named for a man who devoted the last years of his life to investigating the causes of his wife’s disease. His widow runs the conference. She’s still sick. The conference offers Morgies refuge from a world that generally refuses to accept their account of why they suffer. As one presenter wrote to me:

It is bad enough that people are suffering so terribly. But to be the topic of seemingly the biggest joke in the world is way too much for sick people to bear. It is amazing to me that more people with this dreadful illness do not commit suicide . . .

The CDC finally released its study, “Clinical, Epidemiologic, Histopathologic and Molecular Features of an Unexplained Dermopathy,” in January 2012. Its authors, in association with the so-called Unexplained Dermopathy Task Force, had investigated 115 patients, using skin samples, blood tests, and neurocognitive exams. Their report offered little comfort to Morgellons patients looking for affirmation:

We were not able to conclude based on this study whether this unexplained dermopathy represents a new condition . . . or wider recognition of an existing condition such as delusional infestation.

The authors suggested, with some delicacy, that patients might be treated for a number of “co-existing conditions,” such as drug abuse and psychosomatic disorders.

The bottom line? Probably nothing there.

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is the author of a novel, The Gin Closet (Free Press), and of The Empathy Exams: Essays, to be published next April by Graywolf.

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  • Jon Nixon

    One of my patients who believed he suffered from this condition ended up unconscious and on a respirator in the ICU after a car wreck. He was in an induced coma for several weeks. During that time, his skin completely healed. When he recovered consciousness his skin began to break out again. It became obvious to the attending medical staff that his habitual picking and scratching, which was quiesent during the coma, was was the cause of the rash. We tried to him evaluated by psychiatry, but he signed out AMA…..

  • Amelia M. Withington, MD

    Then again, it’s possible that his immune system had a chance to work full-force on keeping the condition in check, undeterred by other stressors, while the patient was in an induced coma. It’s not surprising to me that the symptoms would recur when consciousness was restored. I’m a psychiatrist, and if I had been consulted, my first avenues of inquiry would have been to try to determine the source of the itching. It would be a pity if the patient signed out AMA, feeling that physicians did not take that investigation seriously.

  • don mau

    To treat MD you need organic and amino acids.

    http://www.lyme-morgellons.com/

  • Butch

    Why, to these patients, is there a stigma when it is suggested that their disease is psychological? How is a disease of the mind more incomprehensible than a disease of the skin? I think few people believe Morgellon’s patients are consciously faking, but rather they have developed a psychosomatic response (which is quite real) and the clinging to this artificial diagnosis serves as a defense mechanism to settle the mental chaos that ensues when forced to accept that one’s body or mind (or both) is betraying them. There should be no stigma in accepting that an itch can come from within rather than without, or that what your senses are misleading you. These are very real, and to various extents, very common experiences. The frustration comes in these elaborate and unscientific narratives like chronic Lyme and morgellon’s which simultaneously serve as defense mechanisms while also creating an external barrier to real, meaningful healing.

  • Cindy Casey Holman

    Butch, before you draw too many conclusions on Morgellons after having read one article written from a psychological viewpoint published in popular press, please take a minute to look at the physical manifestations of Morgellons; the striking manifestations which are photographed and published in peer reviewed medical journals. Leslie Jameson does accurately describe the despair, the anger, sadness and betrayal felt by this patient population. She also describes the misinterpretation that non-medical patients arrive at once they’ve reached the end of the road and the end of their hope in seeking medical validation. What Ms Jamison fails to address in this essay are the vivid physiological manifestations. The problem lies in the fact that dermatologists refuse to look at the physical evidence. Yes, that’s right…dermatologists will refuse to look!

    Far too frequently Morgellons patients are given a delusional diagnosis and a script for Orap in the absence of any physical exam whatsoever. No lab work is done, no visualization of the filaments and other skin changes and perhaps most damaging is that NO COMPASSION is afforded this patient population which in itself is damaging to the patient’s psyche. Most Morgellons patients are highly functional, intelligent and are employed in positions such as nursing, law, architecture, journalism and many are practicing physicians themselves! I met Ms Jamison at this conference and I know for a fact that she spoke to some of the articulate patients who were actively practicing as physicians, clinical nurse specialists and the like. I personally made Ms. Jamison aware of the work being done at a UNH research lab which was in her own back yard at the time. Yet….she chose to ignore the medical science and this her essay was based upon depiction of the lay person’s description, the most exaggerated patient profiles and vast misinterpretations of symptoms was, for some reason, the focus of her project.

    Since you believe that Morgellons originates in the mind, I would like to to take a look at my own skin images and please elaborate on how the mind can cause these kinds of changes to follicles. How does the mind cause these patient’s keratinocytes and fibroblasts to proliferate? I have a very interested dermatologist now who is baffled by the physical manifestations. Are you qualified to disqualify a real physical illness being at the bottom of this illness? Do you think it’s just to base a psychiatric diagnosis upon criteria such as a “matchbook sign”? Exactly why have you come to such a knee jerk conclusion in the face of concrete evidence to the contrary? Do you, by chance, have a fixed and unshakable belief about Morgellons disease? Have you done some extensive clinical research in order to rightly divide the psycho-somatic from the physical? Exactly what are your qualifying attributes that place you in a position to draw such conclusions? Where is the solid evidence to back up your conclusions?

    Morgellons does cause psychiatric manifestation. It affects the CNS and can cause an array of neurological deficits. It causes anxiety depression, personality and behavioral changes. You would be wise to stop and look at the physical before limiting Morgellons to a purely psychological origin. After all, crazy people get sick and sick people get crazy. Every patient, crazy or not, deserves a full medical work up prior to receiving a diagnosis for which the treatment is powerful antipsychotics. These medications , Orap and Resperidol can cause irreversible side effects including sudden death. The clinician who doesn’t care induces further damage to the psyche and sadly enough, the misdiagnosis will follow these patients and they will never be likely to be taken serious by any medical provider ever again.

    My post would be far to lengthy to share the horror stories here but we have documented thousands of them. One of the presentations at the very conference Ms Jameson attended was given by Dr. Peter Mayne, and Australian dermatologist. An 18 yr old male patient had horrible itchy sores on their feet and legs and complained of filaments protruding from the skin. This pt was seen by a dermatologist who gave him a knee jerk diagnosis of Delusions of Parasitosis. No blood work was done, no physical exam. A year later the patient with increasing desperation and increasing symptoms of systemic illness was seen by a hematologist and found to be in late stages of Hodgkins Lymphoma. Aggressive chemo was initiated. By this time it was too late. Within the next year this pt was dead at 19 yrs of age.

    Interestingly, Ms Jameson actually quotes Dr. Mayne in a comical cliche he made in reference to the CDCs investigation. Yet, she omitted all the physical evidence and medical curiosity depicted in Dr. Mayne’s presentation. How does one attend a Medical-Scientific Conference and ignore the medical and scientific evidence provided at such a conference? How does one decide to depict only the patient’s perspectives and only the patient’s interpretation of what he/she thinks could be happening to them?

    To me, empathy means to put yourself in the position of the suffering person. To share their pain by experiencing with them, the losses. In order to put yourself in this position, one has to look closely with extreme interest visualizing the extreme physical manifestations which cause the distress. Empathy does not come from documenting behaviors, exaggerations or false interpretations. It comes from knowing as deeply and as accurately as possible what this patient is experiencing. Empathy can only be achieved by looking at the whole picture…not just the psycho-social aspects.

    I have had Morgellons Disease for over 10 years. Please do take a look at the images of my skin. Tell me please how the mind can create these kinds of swollen malformed follicles. Tell me how the filaments can stem from human cells and retain a nucleus. Tell me how it’s even conceivable that a patient could do this to themselves or create these kinds of skin changes. Tell me why specific pathogens are readily detected by multiple methods including culture, electron microscopy, silver nitrate stains, immuno-fluorescent staining and both real time and nested PCR performed now at multiple university labs. Tell me why these same pathogens are absent in controls. Tell me why the CDC failed to do any of this basic investigation on any of the samples they obtained. Since when have patients been expected to accurately interpret the cause of their symptoms? That’s the very reason they go to a doctor who is supposedly qualified in sorting these things out. Tell me why these patients are not deserving of a full medical work up when multiple serious illnesses are known to manifest in formication.

    My images are taken with a ProScope HR 11 and are not altered in any way. Tell me how this can be ignored and even ridiculed by the very specialty field to which we turn for help.
    https://www.flickr.com/photos/thecehf/

    Cindy Casey Holman, RN, Director
    Charles E. Holman Morgellons Disease Foundation
    http://www.MorgellonsDisease.org

    “Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence.” ~John Adams

    Butch, before you draw too many conclusions on Morgellons after having read one article written from a psychological viewpoint published in popular press, please take a minute to look at the physical manifestations of Morgellons; the striking manifestations which are photographed and published in peer reviewed medical journals. Leslie Jameson does accurately describe the despair, the anger, sadness and betrayal felt by this patient population. She also describes the misinterpretation that non-medical patients arrive at once they’ve reached the end of the road and the end of their hope in seeking medical validation. What Ms Jamison fails to address in this essay are the vivid physiological manifestations. The problem lies in the fact that dermatologists refuse to look at the physical evidence. Yes, that’s right…dermatologists will refuse to look!

    Far too frequently Morgellons patients are given a delusional diagnosis and a script for Orap in the absence of any physical exam whatsoever. No lab work is done, no visualization of the filaments and other skin changes and perhaps most damaging is that NO COMPASSION is afforded this patient population which in itself is damaging to the patient’s psyche. Most Morgellons patients are highly functional, intelligent and are employed in positions such as nursing, law, architecture, journalism and many are practicing physicians themselves! I met Ms Jamison at this conference and I know for a fact that she spoke to some of the articulate patients who were actively practicing as physicians, clinical nurse specialists and the like. I personally made Ms. Jamison aware of the work being done at a UNH research lab which was in her own back yard at the time. Yet….she chose to ignore the medical science and this her essay was based upon depiction of the lay person’s description, the most exaggerated patient profiles and vast misinterpretations of symptoms was, for some reason, the focus of her project.

    Since you believe that Morgellons originates in the mind, I would like to to take a look at my own skin images and please elaborate on how the mind can cause these kinds of changes to follicles. How does the mind cause these patient’s keratinocytes and fibroblasts to proliferate? I have a very interested dermatologist now who is baffled by the physical manifestations. Are you qualified to disqualify a real physical illness being at the bottom of this illness? Do you think it’s just to base a psychiatric diagnosis upon criteria such as a “matchbook sign”? Exactly why have you come to such a knee jerk conclusion in the face of concrete evidence to the contrary? Do you, by chance, have a fixed and unshakable belief about Morgellons disease? Have you done some extensive clinical research in order to rightly divide the psycho-somatic from the physical? Exactly what are your qualifying attributes that place you in a position to draw such conclusions? Where is the solid evidence to back up your conclusions?

    Morgellons does cause psychiatric manifestation. It affects the CNS and can cause an array of neurological deficits. It causes anxiety depression, personality and behavioral changes. You would be wise to stop and look at the physical before limiting Morgellons to a purely psychological origin. After all, crazy people get sick and sick people get crazy. Every patient, crazy or not, deserves a full medical work up prior to receiving a diagnosis for which the treatment is powerful antipsychotics. These medications , Orap and Resperidol can cause irreversible side effects including sudden death. The clinician who doesn’t care induces further damage to the psyche and sadly enough, the misdiagnosis will follow these patients and they will never be likely to be taken serious by any medical provider ever again.

    My post would be far to lengthy to share the horror stories here but we have documented thousands of them. One of the presentations at the very conference Ms Jameson attended was given by Dr. Peter Mayne, and Australian dermatologist. An 18 yr old male patient had horrible itchy sores on their feet and legs and complained of filaments protruding from the skin. This pt was seen by a dermatologist who gave him a knee jerk diagnosis of Delusions of Parasitosis. No blood work was done, no physical exam. A year later the patient with increasing desperation and increasing symptoms of systemic illness was seen by a hematologist and found to be in late stages of Hodgkins Lymphoma. Aggressive chemo was initiated. By this time it was too late. Within the next year this pt was dead at 19 yrs of age.

    Interestingly, Ms Jameson actually quotes Dr. Mayne in a comical cliche he made in reference to the CDCs investigation. Yet, she omitted all the physical evidence and medical curiosity depicted in Dr. Mayne’s presentation. How does one attend a Medical-Scientific Conference and ignore the medical and scientific evidence provided at such a conference? How does one decide to depict only the patient’s perspectives and only the patient’s interpretation of what he/she thinks could be happening to them?

    To me, empathy means to put yourself in the position of the suffering person. To share their pain by experiencing with them, the losses. In order to put yourself in this position, one has to look closely with extreme interest visualizing the extreme physical manifestations which cause the distress. Empathy does not come from documenting behaviors, exaggerations or false interpretations. It comes from knowing as deeply and as accurately as possible what this patient is experiencing. Empathy can only be achieved by looking at the whole picture…not just the psycho-social aspects.

    I have had Morgellons Disease for over 10 years. Please do take a look at the images of my skin. Tell me please how the mind can create these kinds of swollen malformed follicles. Tell me how the filaments can stem from human cells and retain a nucleus. Tell me how it’s even conceivable that a patient could do this to themselves or create these kinds of skin changes. Tell me why specific pathogens are readily detected by multiple methods including culture, electron microscopy, silver nitrate stains, immuno-fluorescent staining and both real time and nested PCR performed now at multiple university labs. Tell me why these same pathogens are absent in controls. Tell me why the CDC failed to do any of this basic investigation on any of the samples they obtained. Since when have patients been expected to accurately interpret the cause of their symptoms? That’s the very reason they go to a doctor who is supposedly qualified in sorting these things out. Tell me why these patients are not deserving of a full medical work up when multiple serious illnesses are known to manifest in formication.

    My images are taken with a ProScope HR 11 and are not altered in any way. Tell me how this can be ignored and even ridiculed by the very specialty field to which we turn for help. https://www.flickr.com/photos/thecehf/

    Cindy Casey Holman, RN, Director
    Charles E. Holman Morgellons Disease Foundation
    http://www.MorgellonsDisease.org

    “Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence.” ~John Adams

  • Cindy Casey Holman

    My apologies for the double copy and paste. And my gratitude for you taking the time to carefully read my post.

  • Cindy Casey Holman

    “Symptoms, signs and the Riddle of Morgellons” is an interesting choice for a subtitle in an essay which excludes most all of the signs while embellishing upon the symptoms. Instead of depicting the signs from presentations given by physicians and scientists who have encountered large numbers of Morgellons patients, the author preferred depiction of the symptoms as described by a select few, the most seriously neurologically disabled.

    It would be interesting to determine exactly what this author gleaned from the scientific and medical presentations at this conference and whether or not empathy or even sympathy is involved with the motives of taking such a unique and narrow approach at disease classification. Let’s not expect patients to understand the disease or the mechanism of what is happening in their bodies. That job is for the medical care provider. If the medical provider does not understand the condition, then they should be proactive in trying to figure it out.

    When doing a patient assessment we collect information on the chief complaint, the objective data (signs as observed by the clinician) and follow with the subjective data (symptoms as described by the patient). Once all of this data is assimilated, the clinician creates a differential diagnosis and a plan. Laboratory tests, procedures and imaging may be employed to narrow down the differential. In direct contrast to medical assessment methodology, this essay was aimed at getting inside the head of the desperate and orphaned patient. A narcissistic flair arises when the author repeatedly reflects upon her own personal concerns such as “How do all of the people’s problems affect me? What can I do to protect myself safe from ‘catching’ their pain? What if I am held liable for my bias and disregard to the suffering? How can I escape the guilt?”

    I am thankful that the field of nursing is just the opposite. As nurses, we lose ourselves completely while we’re devoted to the care of others. We keep it real. Always. There is no place for pretentious and both sympathy and empathy come natural. That’s how we roll and that’s how we deal. I am proud to be a nurse.

    Cindy Casey Holman, RN, Director
    Charles E. Holman Morgellons Disease Foundation
    http://www.MorgellonsDisease.org

    “Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence.” ~John Adams

  • Cindy Casey Holman

    “Symptoms, signs and the Riddle of Morgellons” is an interesting choice for a subtitle in an essay which excludes most all of the signs while embellishing upon the symptoms. Instead of depicting the signs from presentations given by physicians and scientists who have encountered large numbers of Morgellons patients, the author preferred depiction of the symptoms as described by a select few, the most seriously neurologically disabled.

    It would be interesting to determine exactly what this author gleaned from the scientific and medical presentations at this conference and whether or not empathy or even sympathy is involved with the motives of taking such a unique and narrow approach at disease classification. Let’s not expect patients to understand the disease or the mechanism of what is happening in their bodies. That job is for the medical care provider. If the medical provider does not understand the condition, then they should be proactive in trying to figure it out.

    When doing a patient assessment we collect information on the chief complaint, the objective data (signs as observed by the clinician) and follow with the subjective data (symptoms as described by the patient). Once all of this data is assimilated, the clinician creates a differential diagnosis and a plan. Laboratory tests, procedures and imaging may be employed to narrow down the differential. In direct contrast to medical assessment methodology, this essay was aimed at getting inside the head of the desperate and orphaned patient. A narcissistic flair arises when the author repeatedly reflects upon her own personal concerns such as “How do all of the people’s problems affect me? What can I do to protect myself safe from ‘catching’ their pain? What if I am held liable for my bias and disregard to the suffering? How can I escape the guilt”?

    I am thankful that the field of nursing is just the opposite. As nurses, we lose ourselves completely while we’re devoted to the care of others. We keep it real…ALWAYS. We save lives rather than monkey with people’s minds. There is no place for pretentious and both sympathy and empathy come natural. That’s how we roll and that’s how we deal. I am proud to be a nurse.

    Cindy Casey Holman, RN, Director
    Charles E. Holman Morgellons Disease Foundation
    http://www.MorgellonsDisease.org

    “Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence.” ~John Adams

  • Cindy Casey Holman

    NBC Milwaukee aired a segment today about Morgellons. A young mother has the condition and provided an excellent interview. Watch the video: http://omicsonline.org/2155-9554/2155-9554-3-140.pdf

  • paul thomas

    I hope the author gets Morgellons.

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