Morgellons: Mystery Illness Or Delusional Parasitosis?

[ChasFink]

I must admit I always assumed this was psychosomatic but no problem with being proved wrong .

Same here. That's why I'm so (pleasantly) surprised. It's so rare that something so very fringe turns out to be exactly what the outsiders were saying all along.

 

[Sharon Hill]

Well, not so fast. The dermatological conclusion was not widely accepted. The consensus was that it is still a psychiatric issue although that doesn't preclude some cases of dermopathy.

Dermatol Online J
2021 Aug 15;27(8). doi: 10.5070/D327854682.
Morgellons disease etiology and therapeutic approach: a systematic review
https://pubmed.ncbi.nlm.nih.gov/34755952/
Support for a psychiatric etiology was more widespread than support for an infectious etiology. Eleven articles regarding treatment efficacy were reviewed. Antipsychotic regimens have the most evidence of efficacy. Existing data regarding Morgellons disease suggests a psychiatric etiology and supports treatment with a low-dose antipsychotic agent once non-psychiatric causes have been excluded.

 

[Kondoru]

If this is a phenomena that creates physical things, what do the tests tell us?

 

[Cochise]

Well, not so fast. The dermatological conclusion was not widely accepted. The consensus was that it is still a psychiatric issue although that doesn't preclude some cases of dermopathy.

Dermatol Online J
2021 Aug 15;27(8). doi: 10.5070/D327854682.
Morgellons disease etiology and therapeutic approach: a systematic review
https://pubmed.ncbi.nlm.nih.gov/34755952/
Support for a psychiatric etiology was more widespread than support for an infectious etiology. Eleven articles regarding treatment efficacy were reviewed. Antipsychotic regimens have the most evidence of efficacy. Existing data regarding Morgellons disease suggests a psychiatric etiology and supports treatment with a low-dose antipsychotic agent once non-psychiatric causes have been excluded.

yeah but...

If it is a real disease it's a particularly weird one. OK, no problem with that. But it's well known that any number of people imagine they are ill. With otherwise real diseases. That doesn't make the disease unreal - nor, incidentally, does it make such people any more than hypochondriacs. I can easily think that an exceptionally odd and freaky disease like this would have more people imagining they've got it than , say, piles.

Since apparently there were real samples of these extruded threads to test that would be a pretty damn powerful psychiatric issue. Mind you false pregnancies have real physical effects.

So on a wider issue, how many illnesses do you have to believe in first in order to get them? And the reverse - how many diseases are curable with placebos if the patient believes in them? I'd have thought they are in the same group. Probably a starter for another conversation.

 

[ChasFink]

Seems to me it's a real physiological disease that many people falsely believe they are suffering from.

 

[uair01]

Morgellons disease: A review of a mysterious psychodermatologic disorder
Elizabeth Strada, BS, Creighton University School of Medicine; Jenna
Sitenga, BS, Creighton University School of Medicine; Anthony Strada,
BS, Creighton University School of Medicine; Greg Aird, BS, Creighton University
School of Medicine

Introduction: Morgellons disease is a rare, unexplained skin disorder that whose specific etiology remains a mystery to both the Dermatologic and Psychiatric community as the specific etiology remains unknown. The condition is characterized by the physical resentation of painful sores with reported crawling sensations within the skin and the fixed belief of infection or parasitic infestation. The
pathognomonic feature of this disease is the presence of filaments or fibers embedded in and emerging from these sores.

Objectives: A systematic review was conducted to include 174 patient cases of Morgellons disease to evaluate for clinical presentation, psychiatric status, and effective treatment methods.

Data synthesis: Most patients were middle-age women from the United States presenting with $1 patch or erosion located anywhere on the body. Most cases reported associated symptoms of pain, itching, bleeding, fiber presentation within the lesion, formication, extreme fatigue, weakness and impaired memory and attention. Analysis of all cases revealed no common fiber etiology, suggesting environmental exposure rather than infectious etiology. Overall, histopathologic examination of lesions did not demonstrate the presence of parasitic/microbial/-
fungal infection or infestation of any sort. Medical history of psychiatric illness was present in a significant number of cases, indicating that Morgellons disease is associated with mental illness and should be classified as a subset of delusional parasitosis. Ultimately it was concluded that there was no common underlying medical condition or infectious organism in Morgellons cases.

Conclusion: The most effective treatment for Morgellons disease employs pharmacologic antipsychotic therapy combined with thorough psychiatric evaluation and monitoring by a clinical psychiatrist in close collaboration with a dermatologist. Pharmacologic drugs of choice include second generation, atypical antipsychotics such as risperidone, amisulpride, and olanzapine. This present article represents the most comprehensive review of a very rare disorder and recommends labeling Morgellons disease as a disorder of delusional infestation to more effectively recognize early clinical presentation and treatment options for this psychiatric illness.

AB194 J AM ACAD DERMATOL SEPTEMBER 2018

 

[catseye]

Morgellons disease: A review of a mysterious psychodermatologic disorder
Elizabeth Strada, BS, Creighton University School of Medicine; Jenna
Sitenga, BS, Creighton University School of Medicine; Anthony Strada,
BS, Creighton University School of Medicine; Greg Aird, BS, Creighton University


Data synthesis: Most patients were middle-age women from the United States presenting with $1 patch or erosion located anywhere on the body. Most cases reported associated symptoms of pain, itching, bleeding, fiber presentation within the lesion, formication, extreme fatigue, weakness and impaired memory and attention.

AB194 J AM ACAD DERMATOL SEPTEMBER 2018

Every one of those symptoms (apart from the fibre presentation) are also symptoms of menopause.

 

[Mythopoeika]

The fibres are probably from clothing that sticks to the slightly-weeping wounds.
I have this problem myself with a small wound on my foot. I have to use tweezers to remove the fibres that have come off my sock.

 

[Endlessly Amazed]

The fibres are probably from clothing that sticks to the slightly-weeping wounds.
I have this problem myself with a small wound on my foot. I have to use tweezers to remove the fibres that have come off my sock.

This is a great common-sensical surmise. For people who have had the tick-borne disease, the little fibers are karetin-based and are grown under and inside of the skin, leading to pain and itching. The people who do not have these probably have some sort of psychological problem.

If I recall correctly, very young children (under 2 years of age) children have had these fibers. How terrible for a young child who can't understand what is happening. This is part of the evidence for me that this is not just a psychological illness, but a physical one with documented and testable causes. The people whose blood tests show they have not had the tick-borne disease also do not have the karetin fibers in the skin.

I think of this situation in terms of a Venn diagram of overlapping circles. The bigger circle contains the psychological sufferers; the smaller circle contains the tick-born illness sufferers. Since in the US, most people who experience itching and sensations of movement under their skin have psych problems, the medical response is that ALL of these symptoms are psychological. Compounding the medical misdiagnosis is that the tick-based illness seems to be new for the US, and so there is no good source for information about this. Physicians, like most people, go for the easiest, most likely cause. A new, rare disease with symptoms coinciding with symptoms of an established disease is unlikely to get the attention it deserves.

My personal experience causes me to empathize with the real sufferers (! Alert to both TMI and Rant below!):

I have endured great pain frequently over most of my adult life with a medical condition which doctors refused to recognize because their tests indicated everything was OK. (But other types of tests which are not recognized by medical insurance indicated a clear problem.) Also, it falls between two different medical specialties, so it was nobody's baby. 100% of all my doctors until I was in my 50s gently told me that I needed psychological counseling. This condition caused pain and other effects such that I was sometimes in the hospital for days. In 2010, it landed me in the critical care unit after emergency surgery for multiple stomach ulcers that had ruptured and caused peritonitis. Four years ago, the US AMA recognized this was a real disease, and so getting the medicine I needed became much easier. Until then, I had to search for independent physicians who would prescribe off-label for me. I told them what to prescribe based on my symptoms and my hypothesis of what was going on. The drug and the dose are what I came up with myself after I got out of the hospital in 2010 and decided I needed to take matters into my own hands. What I dealt with on my own for all those decades is now considered a "life-threatening" situation requiring immediate, emergency medical attention. No shit, Sherlock.

My experience is very like the Morgellens sufferers' experience. A real, rare, "new" disease; some symptoms in common with people who have psychological problems.

 

[uair01]

This is a great common-sensical surmise. For people who have had the tick-borne disease, the little fibers are karetin-based and are grown under and inside of the skin, leading to pain and itching. The people who do not have these probably have some sort of psychological problem.

If I recall correctly, very young children (under 2 years of age) children have had these fibers. How terrible for a young child who can't understand what is happening. This is part of the evidence for me that this is not just a psychological illness, but a physical one with documented and testable causes. The people whose blood tests show they have not had the tick-borne disease also do not have the karetin fibers in the skin.

I think of this situation in terms of a Venn diagram of overlapping circles. The bigger circle contains the psychological sufferers; the smaller circle contains the tick-born illness sufferers. Since in the US, most people who experience itching and sensations of movement under their skin have psych problems, the medical response is that ALL of these symptoms are psychological. Compounding the medical misdiagnosis is that the tick-based illness seems to be new for the US, and so there is no good source for information about this. Physicians, like most people, go for the easiest, most likely cause. A new, rare disease with symptoms coinciding with symptoms of an established disease is unlikely to get the attention it deserves.

My personal experience causes me to empathize with the real sufferers (! Alert to both TMI and Rant below!):

I have endured great pain frequently over most of my adult life with a medical condition which doctors refused to recognize because their tests indicated everything was OK. (But other types of tests which are not recognized by medical insurance indicated a clear problem.) Also, it falls between two different medical specialties, so it was nobody's baby. 100% of all my doctors until I was in my 50s gently told me that I needed psychological counseling. This condition caused pain and other effects such that I was sometimes in the hospital for days. In 2010, it landed me in the critical care unit after emergency surgery for multiple stomach ulcers that had ruptured and caused peritonitis. Four years ago, the US AMA recognized this was a real disease, and so getting the medicine I needed became much easier. Until then, I had to search for independent physicians who would prescribe off-label for me. I told them what to prescribe based on my symptoms and my hypothesis of what was going on. The drug and the dose are what I came up with myself after I got out of the hospital in 2010 and decided I needed to take matters into my own hands. What I dealt with on my own for all those decades is now considered a "life-threatening" situation requiring immediate, emergency medical attention. No shit, Sherlock.

My experience is very like the Morgellens sufferers' experience. A real, rare, "new" disease; some symptoms in common with people who have psychological problems.

I can imagine no bigger diagnostic problem than the one you describe: a real but rare disease that has a lot of symptoms in common with common psychosomatic disorders. Even well intentioned doctors will struggle to make sense of it.

Note: I'm interested in the Lyme and Morgellons connection, but there is also evidence that "long Lyme disease", with lingering weird after effects might be psychosomatic. So it's a big muddle.

Note: I am totally convinced that psychosomatic disorders should be taken seriously, but I think that "yet another MRI scan" is not always the best solution.

 

[Endlessly Amazed]

I can imagine no bigger diagnostic problem than the one you describe: a real but rare disease that has a lot of symptoms in common with common psychosomatic disorders. Even well intentioned doctors will struggle to make sense of it.

Note: I'm interested in the Lyme and Morgellons connection, but there is also evidence that "long Lyme disease", with lingering weird after effects might be psychosomatic. So it's a big muddle.

Note: I am totally convinced that psychosomatic disorders should be taken seriously, but I think that "yet another MRI scan" is not always the best solution.

I forgot to reply to this! I have always wondered if people who complain of decades-long pain and illness:
Have totally psychosomatic illness
Have some other emotional or somatic disease
Have a real disease and have developed psychosomatic symptoms as well
HAD a real disease, no longer have it, but now have psychosomatic symptoms which developed during the "real" illness and are now entrenched

For the long time my doctors were telling me to get psychological counseling, I dutifully went, and did meditation, mindfulness, grounding, therapeutic massage, etc. You can imagine the drill. Nothing helped.

With the Lyme disease lingering symptoms, I have also read this and wondered if the change in gut bacteria from the years of antibiotics have changed brain and somatic function as well.

 

[AgProv]

So... people who have actually, unequivically, had parasite infestations. Are they likely to be more or less sensitised to the issue? I recall, as a kid and a young adolescent, having repeated attacks of threadworm infestations. The idea - and actually having seen them (I draw a veil on the details) - that tiny little worms were living an independent existence up my bum, having colonised me, was a freak-out that left me shuddering with revulsion. That I had a couple of repeat infestations over a couple of years left me with the feeling they were there forever and the vermicides only gave temporary respite. Fortunately, getting the best advice and stepping up EVERYTHING with regard to personal and environmental hygiene appeared to end it completely - been free for about forty-odd years now. (things you wouldn't even consider till it happens - resorted to completely throwing out all underwear and not assuming a laundry might kill any eggs in cracks and folds; same for bed line, bathtowels, replacing these from new; also shared items in the bathroom like soap - who else uses them and are they infected too? What about the bedroom drawers where you store your underwear? Can't rule it out, scrub them clean and disinfect.)

There was a period where I passed something strange - again, veil of discretion - and was convinced I had a tapeworm in there. (Doctor was sceptical as the symptoms didn't match, but prescribed me what I suspected afterwards was a placebo heavy-duty vermicide).

I'm now pretty much sure there was no tapeworm present at all - but I'd been sensitised by my encounters with lesser intestinal worms. Therefore I wonder if there are people with Morgellons who have indeed in their past had a brush with minor parasites and their minds are open to all sorts of phobic possibiliities.

 

[AgProv]

Another thought that arises. Morgellons from what I've read here and elsewhere seems to be exclusively an affluent first-world issue. Has anyone reported this in under-developed nations? Societies more prone to parasite infestations (poor or no infrastructure, lower expectations of and access to hygiene as we understand it, more active parasites and diseases). It should be cropping up as often in sub-Saharan Africa as it does in California? Is it something in the psyche of people whose basic needs for shelter, cleanliness, adequate nutrition, et c, are all taken care of, people who then have leisure? (Or it could be an environmental thing, living in the developed and industrialised First World?)

 

[Endlessly Amazed]

Another thought that arises. Morgellons from what I've read here and elsewhere seems to be exclusively an affluent first-world issue. Has anyone reported this in under-developed nations? Societies more prone to parasite infestations (poor or no infrastructure, lower expectations of and access to hygiene as we understand it, more active parasites and diseases). It should be cropping up as often in sub-Saharan Africa as it does in California? Is it something in the psyche of people whose basic needs for shelter, cleanliness, adequate nutrition, et c, are all taken care of, people who then have leisure? (Or it could be an environmental thing, living in the developed and industrialised First World?)

Good questions. I am not a doctor or weird-things-ticks-carry expert, but: I vaguely remember reading that this was a relatively new disease, arising in Texas and perhaps northern Mexico. All diseases have not been around for thousands of years, at least crossing the species line to humans.

I think it is a coincidence that this arose in an affluent country, and its arrival is not because of the relative wealth of the country. However, perhaps its relatively quick (I know I know but I mean it didn't take 4 generations or 100 years to identify it) diagnosis was because of a few persistent sufferers and 1st world health care.

If one thinks of it as an actual physical reaction to some parasite, then its geographic origin does not affect whether it actually exists or not.

If one thinks of it as a psychosomatic disease, then your conjectures about it arising as a consequence of first world living make sense.

My understanding is that the actual infectious agent has not yet been agreed upon by doctors. I vaguely wonder if it is the person's body reacting to some chemical the tick-borne pathogen emitted, or that the body produced in reaction to the pathogen. I am allergic to flea-spit (you have my complete approval to laugh hysterically about this), and it ain't pretty.

Ticks carry multiple diseases in the parasites they carry. Ticks are the vectors, but they are not the infectious agents themselves.

 

[AgProv]

Ticks carry multiple diseases in the parasites they carry. Ticks are the vectors, but they are not the infectious agents themselves.

Get it. We're so focused on what we can see - the fleas and ticks - that we don't wonder on what might be hitching a ride on them, that we can't see.

 

[Cochise]

If the disease is confined to a particular area/continent, could it simply be that the parasites or their carriers are only native to that area? Nothing to do with its relative prosperity.

 

[AgProv]

If the disease is confined to a particular area/continent, could it simply be that the parasites or their carriers are only native to that area? Nothing to do with its relative prosperity.

Or the relative closeness of industrial processes in a developed country? A western industrial society might also be Ground Zero for environmental pollutants.

 

[catseye]

Or the relative closeness of industrial processes in a developed country? A western industrial society might also be Ground Zero for environmental pollutants.

Or the fact that only those in developed countries tend to have a relationship with pets that is physically close? I kiss my dog a lot - do those in underdeveloped countries have that almost over-developed sense of sentimentality for animals that we, in the West, do?

 

[Cochise]

Or the fact that only those in developed countries tend to have a relationship with pets that is physically close? I kiss my dog a lot - do those in underdeveloped countries have that almost over-developed sense of sentimentality for animals that we, in the West, do?

Depends on the country. In some countries they'll sleep with the dogs on the bed for mutual warmth, in other countries they'll drive them away with stones or eat them. Not something it's easy to generalise on.