What are your thoughts on Morgellons disease?

I’d like to read what Oliver Sacks would say. I trust him implicitly.

I believe the medical community is coming closer to accepting it as a disease. “Morgellons disease is a poorly understood condition which a growing number of physicians believe to be a chronic infectious disease. Although the Centers for Disease Control and Prevention (CDC) is currently investigating the disease, it is not yet fully recognized by the medical community.” Source

It is now believed to be related to Lyme Disease.

I’ll first start by saying Joni Mitchell is a great artist quite a few of her songs my mom loves. I think it’s said that doctor’s are split on this disease being a physical illness others suggest it is a form of psychosis called “delusional parasitosis,” which fibres appear under the skin, which gives a crawling and burning sensation, it’s kind of sad but doctor’s are researching and looking into it, i hope she finds something if not to cure then something to ease her suffering at least, and everyone knows the mind can play tricks sometimes but this seems to be something physical she can feel what she feels in her mind it is real and should be treated according to that, not as if she is delusional too many doctor’s play God with human lives, i think they shouldn’t be any doubt but there again people only want to believe what they can clearly see. Just to make another point in the dark ages/many years ago people were thrown into mental institutes for having depression people seem to disbelieve or even afraid to accept such things, Anyways i hope she recovers from this illness it must be very very unpleasant indeed, and with the added pressure of doctor’s thinking that it’s some kind of delusion she is having, Good luck to her.

“But thousands of suffers claim similar symptoms – that scratchy fibers protrude from their skin, causing extreme irritation. These fibers are removed and analyzed and usually found to be cotton, which doctors say are just remnants from clothing.”

It seems to me that cotton or other fabric fibers left on the skin wouldn’t be protruding from or otherwise attached to it, but would instead merely be lying on it or held in the body hairs nearby. For me this raises the question of how were fibers removed? If they were easily swept off or otherwise removed without having to forcibly separate them from the skin, then I would agree with that conclusion.

However, if they found the fibers solidly attached to or bonded with the skin, then how did that happen? I’m not even saying that Occam’s Razor would therefore suggest that the cause is Morgellons, but I’d like to see an explanation of how the fibers became attached, rather than conclude from those circumstances alone that the patient is tuned to the Looney channel.

I heard about a guy who tried to treat his Morgellons using homeopathic therapies, and his torso eventually grew its own shirt! ;-o

I had never heard of it before. Sounds similar to how fibromyalgia patients were treated for years, or not treated I should say.

This is one of the problems in medicine, doctors don’t tend to believe something exists unless it is proven or has some sort or protocol, or standard of care, for treatment. They can see something in front of their eyes and believe whatever literature there is on it rather than using their own brains to question the findings. If something hadn’t been researched then there is no proof, but all that means sometimes is no one has bothered to do scientific studies. Yet.

Almost 5 years ago, my brother saw several doctors/specialists/healers about a sensation that bugs were crawling under his skin. He also had mood/thought/sleep disorders. We had a big family blow up about his bizarre behavior. I thought he was doing drugs. I wonder now…

There was a fantastic article about mites living in hair follicles in the February issue of National Geographic – complete with electron microscope photos of the critters.
Warning! I would consider the article NSFM (Not safe for Meal time – or just before crawling into bed!.

Maybe a very small number of people are allergic to mite feces.

@Cupcake Did he submit to drug testing?

This is why I always first choose to believe a person. You might have at first, I’m not saying you didn’t. When someone has an undiagnosed chronic illness they eventually get lumped in with hypochondriacs and OCD people, because they try to go to several doctors, all the doctors tell them they are normal, psychological help starts to be suggested, and then the person/patient either revs up going to the doctors or stops going almost completely. It leads to anxiety, depression, anger, and self doubt. It’s awful. It begins to affect everything. Every part of your life.

A typical cotton fiber is 20 – 25 um in diameter and it’s virtually all organic: cellulose, hemi-cellulose, and lignin. A typical dust mite is 250 – 400 um and it eats organic material. Maybe, just maybe, there is a relationship.
Or maybe the person did acid in their youth and their nervous system is having flashbacks. (Like someone I know who 30+ years later still occasionally sees bug faces on certain cars.)
“It’s totally safe! Try it!” ... Yeah, right!

@JLeslie No, and no one asked him to. He was in his late 30s. I didn’t even ask him if he was using… just commented on his erratic behavior. Interesting, though, that it was at the same time as the bugs under his skin (which can also be a side effect of cocaine use).

I did encourage him to see an infectious disease specialist who had some tropical disease experience, since my brother spent years in rural South American towns.

@Brian1946 The sufferers claim that the fibers are attached to their skin, yes. Trouble is I don’t think this has been documented.

One of the essays in Leslie Jamison’s The Empathy Exams deals with this disease. It and her other essays are a fascinating read, I highly recommend the book. But do be warned that her views on the disease align with the current scientific consensus.

The “fibers” are the most compelling part of it. If they can prove that the fibers are not cotton and are actually produced by the body (or something living in the body), then they’d have a case. Otherwise it’s difficult to prove a disease whose only symptom is pain or itching that doesn’t have any physical manifestation.

The trouble now is that bringing such fibers into your doctors’ office has been marked as a telltale sign of the delusion that doctors believe this disease is. Here is an excerpt from The Empathy Exams:

“Patients started bringing these threads and flecks and fuzz to their doctors, storing them in Tupperware or matchboxes, and dermatologists actually developed a phrase for this: “the matchbox sign,” a signal that the patient had become so determined to prove his own disease that he could no longer be trusted.”

I’ve heard of this many times as a kind of psychosis. I’ve never heard anyone give it credibility, even recently. It’s hard to imagine that it is an actual medical condition.

Why do people tend to believe more easily that the person has fibres growing from their skin than that they are delusional? That they are delusional seems far more likely to me.

I have also never heard anyone give it credibility.

I don’t have a stance. I don’t know enough to have a stance. I just prefer to give the benefit of the doubt to people who are suffering. There are a lot of people who are claiming to be suffering in the same way. And as @JLeslie pointed out above, there are other diseases, like fibromyalgia, that have been denied up until recently.

@Mariah Well, consider people who have trypophobia (a powerful aversion to biological holes in patterns). We are surrounded by these patterns our whole lives. If it had never occurred to someone to have this reaction, the phobia couldn’t exist. But the power of suggestion is very great – I have a feeling these are kindred afflictions. And with the internet hooking up people who share “interests”, nothing is more likely than that their numbers would grow.

@dappled_leaves odd you say that; I’ve been having occasional anxious mental hole pictures since that recent question here. And that seems so nutty to me.

The disease did rise with the advent of the internet. This is certainly a possibility.

I just find myself wondering how frustrating it would be if people said to me, well, it’s far more likely that you’re imagining things than it is for your body to be attacking itself. To have doctors – or worse, laypeople – claiming to know more about the reality of my body than I do. I feel for these people.

@janbb I really do think this is how this kind of thing spreads. We can so easily become fixated on disturbing ideas. Maybe learning about Fibonacci numbers and the golden ratio might help. :)

@Mariah I feel for them, too. But the idea that actual textile fibres are growing out of skin is, on its face, ridiculous. It would not do them any good for doctors to buy into the delusion – that will not help them get any better. Probably won’t stop various quacks from trying to capitalize on their suffering, though.

Probably at one point people said that the idea that the immune system would ever attack one of the body’s own organs was ridiculous too. The body is extremely complex and I’m not one to say that anything is impossible. But I can respect your opinion.

@Mariah It’s complex, but it’s not capable of creating woven textiles. :)

Really, this sort of comparison is a false equivalence. We don’t know everything, but that doesn’t mean we can’t know anything.

I do think the fibers could possibly be created by some kind of parasite. Like how spiders make silk. I don’t know enough to be certain of course, that’s why I’m refraining from a stance.

@Mariah But such parasites or their products would be visible under a microscope. Anyone who made such a discovery would proclaim it from the rooftops – and yet, no one has ever seen them. There isn’t even a mystery here. These are things we have the power to observe, if they were happening.

But nobody is studying the disease. Because we have declared it a delusion. And patients are sent to psychiatrists as soon as they approach a dermatologist with these symptoms.

Patients do claim to be able to see these fibers under a microscope.

The parasites themselves could be anywhere within the body, that is not so easy to confirm or deny.

Well, I guess I’m done here. Of course, the patients claim to see the fibres. And when they bring them to doctors, the doctors tell them the fibres come from their clothing, or from other things they touch.

What you are saying is that you don’t know whether it is possible. There’s no reason to ascribe that same uncertainty to the medical community.

I’m not trying to fight with you or piss you off, I’m just saying that it’s not so easy to say “of course it is impossible for the body to produce fibers.”

Here is another excerpt from The Empathy Exams:

“Sandra brings up a video of herself in the bathtub. ‘These are way beyond fibers,’ she promises. Only her feet are visible protruding through the surface of the water. The quality is grainy, but it appears the bath is full of wriggling larva. Their forms are hard to feel sure about – everything is dim and a little sludgy – but that’s actually what it looks like. She says that a couple years ago there were hundreds coming out of her skin. It’s gotten a little better. When she takes a bath, only two or three of those worms come out.

I’m really at a loss. I don’t know if what I’m seeing are worms, or where they come from, or what they might be if they’re not worms, or whether I want them to be worms or not, or what I have to believe about this woman if they aren’t worms, or about the world or human bodies or this disease if they are. But I do know I see a bunch of little wriggling shadows, and for now I’m glad I’m not a doctor or a scientist or basically anyone who knows anything about anything, because this uncertainty lets me believe Sandra without needing to confirm her. I can dwell with her – for just a moment, at least – in the possibility of those worms, in that horror. She’s been alone in it for so long.”

My thoughts are these, what the hell is it & maybe I should’ve read the details.

The details would help with that question, yeah. :P

Or maybe I did read them & just played.

@Mariah I’m not in any way pissed off by your comments – it’s just that you seem really invested in believing this thing is real, when there’s no compelling reason to. So, it becomes pointless for me to continue in this discussion.

The worm story doesn’t seem related to this discussion, since it’s not about Morgellons at all. I have no idea what the worms are or whether they are real, or whether anyone is even trying to convince the person that they’re not real.

But it does sound to me as if you are very bothered by the idea that the patient could be wrong. And it sounds to me as if this leads you to believe that the illness is real.

My point is that you are faced with two different diagnoses here: (1) delusion and (2) Morgellons. Why do you “want” to believe it is (2)?

What makes (1) so distasteful a diagnosis that you are determined to believe in the physically impossible to ensure that you don’t accept (1)?

The worm story is about Morgellons. “Sandra” is a woman with Morgellons.

You misunderstand my stance. I am playing devils’ advocate to you, in the hopes that I can convince you to at least consider the alternative. I am not convinced one way or another.

I can read your reply more thoroughly and respond in more depth later. I have to go to class.

@Mariah Yes, the disease is being studied. The CDC is studying it right now (see my post above).

Also the fibers are documented. Here is an NIH study that used people with confirmed attached fibers.

I think the medical community is tending toward acceptance of it as a disease and away from delusions (which I think was ridiculous to begin with). It’s like saying that women are “hysterical” as doctors and psychiatrists did for years.

Finally, it is not a creation of the internet. The disease dates back to 1675.

@Mariah Patients started bringing these threads and flecks and fuzz to their doctors, storing them in Tupperware or matchboxes, and dermatologists actually developed a phrase for this: “the matchbox sign,” a signal that the patient had become so determined to prove his own disease that he could no longer be trusted.

This seems like such a bizarre reaction to me. Why wouldn’t any patient want to prove their condition is real?

Maybe it’s a dermatological condition. Have you ever had a partially healing scab that hardened with some fibers from your clothing?

@marinelife Not a creation of the internet, but was possibly encouraged and spread by the internet:

“We see a map of America with patches of known cases breaking out like lesions over the land, a twisted Manifest Destiny: disease claims community, claims the disordered as kin. Just as fibers attach to an open wound – its wet surface a kind of glue – so does the notion of disease function as an adhesive, gathering anything we can’t understand, anything that hurts, anything that will stick. Transmission by Internet, some skeptics claim about Morgellons – chat boards as pied pipers, calling all comers. It’s true that Morgellons wasn’t officially born until 2001. It’s grown up alongside the Internet. Its online community has become an authority in its own right.”

@Mariah I am wondering what that source was. There is scientific study showing that it is a contagious disease:

“Evidence Mounting that Morgellons Disease is an Emerging Infectious Illness, Contrary to CDC Report
Latest Scientific Findings Announced by The Charles E. Holman Foundation Show that a Spirochete is Associated with Controversial Disease

The latest in a series of scientific investigations of the illness known as Morgellons Disease has been published January 28, 2013 by the prestigious journal F1000 Research. The newest paper, “Association of spirochetal infection with Morgellons disease” is the fourth in a series of related publications by veterinary microbiologist Marianne J. Middelveen from Calgary, Alberta, Canada and Internist Raphael B. Stricker from San Francisco, CA. Their international coauthors include Divya Burugu, Akhila Poruri and Dr. Eva Sapi from the Department of Biology and Environmental Science, University of New Haven, West Haven, CT; Jennie Burke, Director, Australian Biologics, Sydney, NSW, Australia; Dr. Peter Mayne, Internist/Dermatologist of Laurieton, NSW, Australia; and Dr. Douglas Kahn, Pathologist, Olive View-UCLA Medical Center in Sylmar, CA.

This newest publication more fully explores the nature of the distinctive filaments/fibers unique to Morgellons Disease. Through the use of histological staining, immunofluorescent staining, electron microscopic imaging and polymerase chain reaction (PCR) genetic testing, further evidence was revealed of the involvement of a spirochete, Borrelia, in the etiology/pathogenesis of this emerging illness. Furthermore, motile spirochetes identified as Borrelia grew in culture medium inoculated with patient dermatological specimens. “These latest scientific findings supporting an infectious cause of Morgellons disease should put to rest any claims that the lesions of this bizarre skin disease are either self-induced or that people suffering from this illness are delusional,” said Dr. Stricker. Cindy Casey-Holman, RN, Exec. Dir. of the Charles E Holman Foundation (CEHF) further underscored the significance of these findings by stating, “Evidence is amassing that Morgellons Disease, is a very real emerging infectious illness of major public health concern, contrary to the published conclusions of the CDC/Kaiser paper of Jan 2012.” Source

Well, according to Wiki most of the patients are delusional, or sometimes they self-diagnose themselves but turn out to have a known skin disorders.

”The main purported symptom of Morgellons is “a fixed belief” that fibers are embedded in or extruding from the skin”

@marinelife Awesome, this is heartening news. I wonder why this wasn’t mentioned in my source, which is The Empathy Exams by Leslie Jamison, and which was published in 2014. I’m glad to learn this, thank you.

@Dutchess_III Wikipedia vs medical journals.
Hmmm…tough choice. ~

^^ had the same thought.

WIki, @Dutchess_III, really???

I started bringing photos, my husband, and other things I won’t mention, to the doctor’s office to try and prove what I was saying was true.