The following morning, after a terrible night’s sleep, the patient was covered in a scab like rash and the itching continued. He saw his GP who thought this was a probable contact dermatitis and gave advice accordingly.
Over the next couple of months things went from bad to worse. The itching continued, he couldn’t sleep, the rash and scabs spread, and he became convinced he was infested with bugs. In fact, the patient was able to squeeze “bug stuff” out of the scabs for his GP to see! The GP took skin samples and sent them off to the microbiology lab, but no parasites were seen and nothing infectious grew.
The Dermatologist took a detailed history and examined the patient. Samples were taken from the oozing wounds scratched by the patient for further laboratory analysis. Before sending the samples, the Dermatologist thought it best to discuss which tests to do with the duty Microbiologist.
The Dermatologist gave the story to the Microbiologist who, whilst still listening, looked up the old lab results. Then the Dermatologist finished by saying “I actually think this might be Morgellons, but I want to be sure.”
Trying not to show that he had no idea what the Dermatologist was saying the Microbiologist said “it could be, send me a skin sample, some serum and maybe three stool samples and I’ll see if we can identify any Morgellons for you.”
“Errrrrrrr,” replied the Dermatologist trying not to sound rude, “you do know what Morgellons is, don’t you?”
“Never heard of it” confessed the Microbiologist.
What is Morgellons?
Morgellons is a very unusual condition that normally presents with scab-like skin lesions, sensations of insects in the skin and self-reported extrusion of fibres from the skin. Other symptoms commonly associated with the skin features include fatigue, difficulty concentrating, short-term memory loss and depression. Symptoms are often chronic or relapsing in nature, and the condition can be extremely upsetting and debilitating for those affected.
The name Morgellons was given to the condition by Mary Leitao in 2002 after her son developed the symptoms; it is named after a condition known as “the Morgellons” described in the 1600s by Sir Thomas Browne in which children apparently developed brittle hairs on their backs… but what that has to do with a skin infestation I have no idea! Mary Leitao later established a Morgellons Research Foundation. Joni Mitchell, the Canadian singer whose hits include Big Yellow Taxi, was also apparently a sufferer of this condition.
CDC Investigation 2006-2008
Back in 2006 the Centre for Disease Control and Prevention (CDC) in the USA, under pressure from Congress and a number of US Presidents, finally agreed to carry out research into this unusual condition. Up until this time the medical profession had been dismissive of the condition and those experiencing symptoms.
The CDC investigation looked at an area in Northern California, USA, where 115 patients between 2006 and 2008 were identified as having symptoms suggestive of Morgellons. The site was chosen for its unusually high rate of sufferers.
The CDCs research was thorough and extensive. Patients gave detailed histories, were physically examined, underwent blood and urine tests, and had skin and fibre samples taken for microbiological and histopathological examination. Patients also underwent psychological evaluation. Microbiological samples were tested for bacteria, fungi and parasites whilst fibre samples were analysed using electron microscopy, x-ray analysis and infrared spectroscopy.
CDC investigation results
The first observations of the CDC investigation were that patients were more likely to be female (77%) with an average age of 55 years and of Caucasian ethnic origin. Most patients were self-diagnosed and there was no common location within the State where they lived.
Further analysis of the skin symptoms and signs showed no specific body distribution and no seasonality or time related initial eruption suggesting there was not a parasitic cause as most parasites are seasonal and bite or infest specific body areas e.g. scabies and the skin webs between fingers.
When asked about habits or hobbies there were no striking features other than 78% reporting that they had close contact with (usually a household member) someone who used solvents such as paint thinner, furniture stripper, turpentine, lighter fluid etc. This would be in keeping with a physical chemical induced cause, although the incidence of exposure to such chemicals in the general population is unknown and therefore hard to extrapolate to Morgellons cases.
The blood tests were normal in most patients. A few had raised inflammatory markers, which is to be expected within a randomly selected population and may not be significant. A very small number had inconsistent blood tests for infectious diseases e.g. hepatitis serology with contradictory results suggestive of false positive tests.
Fatigue and muscle pain were particularly common, occurring in 70% pf patients. Over 50% of patients felt their condition adversely affected their lives. Many patients had body image disorders or depression picked up on neuropsychiatric evaluation, which might suggest a non-organic (i.e. non-physical) trigger causing their symptoms.
The results were essentially unhelpful in discovering the cause of Morgellons!
One very striking feature of the laboratory results though was that 50% had at least one “drug” detected in their hair samples, e.g. amphetamines, barbiturates, benzodiazepines, cannabinoids, opiates, cocaine and propoxyphene, all of which can be drugs of abuse and can cause degrees of psychosis. It was unclear if the drug use preceded the symptoms or was used to alleviate them. This finding would suggest though the possibility of Morgellons being a neuropsychiatric disorder.
The final analysis was of the fibres and biopsies taken from the patient’s skin. A few patients’ biopsies had evidence of inflammation, but this isn’t surprising if the lesions had been scratched. More importantly none of the microbiological investigations identified an infectious organism and the fibres were identified as normal skin proteins or cellulose consistent with cotton.
So, the CDC study found no evidence to support an infectious cause of Morgellons. There was no link between patients in time, place or person to suggest infection. The laboratory tests were normal and no cause was identified by detailed analysis of skin tissue or fibres.
So, what is Morgellons?
So, having done an excellent and thorough study of this unusual condition the CDC fell short of drawing any firm conclusions about the cause of Morgellons. They said “we were not able to conclude based on this study whether this unexplained dermopathy represents a new condition, as has been proposed by those who use the term Morgellons, or wider recognition of an existing condition such as delusional infestation, with which it shares a number of clinical and epidemiological features”.
But if you read between the lines the use of a term like “delusional infestation” is telling (i.e. the patient’s brain is telling them they have an infestation of parasites that aren’t actually there). It appears that the CDC researchers believe this condition to be primarily neuropsychiatric in origin.
It is important to recognise that neuropsychiatric conditions are just as important as other types of illnesses; the cause doesn’t make any difference to the validity and the suffering is equally real. I suspect many of these patients spend years bouncing from one doctor to another, having multiple tests and trying multiple pills and potions, before someone asks the question about whether this might be neuropsychiatric.
And the first step in asking the question is to acknowledge that the condition exists… so the treatment isn’t an antiparasitic drug but rather to train the brain that the “felt” symptoms are not a reaction to something physical and the mind requires retraining to adjust to what the brain perceives… GOSH I’m glad I deal with identifiable bugs, these imagined creepy crawlies sound really challenging.
Hold on! Wait a minute! My forearms are covered in scratches and scabs and are a bit itchy… Have I got Morgellons!?! [OR it’s the fact that you were cutting brambles and nettles at the weekend and got an “itsy-bit” savaged by the thorns? - ECIC)] Do you think? Oh yeh, probably more likely, panic over, but where did I leave the calamine lotion…? [Don’t you mean the “there-there” lotion? Or “Man-up” cream?!? – ECIC]