White Coat Underground

So-called “morgellons syndrome” is an interesting phenomenon. This syndrome is not at this point generally recognized by the medical community, but its sufferers describe many different systemic symptoms, such as “brain fog” and fatigue, and characteristic skin lesions which they describe as containing or extruding an unknown substance. The patients are most often diagnosed as having delusions of parasitosis, a diagnosis which understandably is not often acceptable to the patient.

One of the most consistent facts to date about the disorder is that there has been no significant scientific literature published about morgellons as a distinct entity. In the literature—such as it is—morgellons suffers one of two fates: it is attributed to delusions of parasitosis; or it is presented as unverified and unverifiable opinions from self-appointed experts. But there is a hint and a trickle of information. The CDC has an ongoing investigation into “unexplained dermatopathy”, and a recent commenter has sent a new article my way.

The article, entitled, “Morgellons disease: Analysis of a population with clinically confirmed microscopic subcutaneous fibers of unknown etiology” was published this month in the Journal of Clinical, Cosmetic, and Investigational Dermatology. I would give you a PMID or DOI, but the journal is not indexed by PubMed. The publisher describes it as “open access” and emphasizes that, “[t]he journal is characterized by the rapid reporting of clinical studies, reviews and original research in skin research and skin care.” The journal even has a “testimonials” page. That’s unique. I’m pretty sure most of the journals I read don’t have that. All of the testimonials agree that the service is excellent. In addition, the journal appears to publish very efficiently:

“I was very impressed with how promptly the paper was published.”

“I was impressed at the rapidity of publication from submission to final acceptance.”

When evaluating a study, it’s important to note the source and the authors first. This journal would appear to value rapid communication over quality. That’s not generally a favorable quality, but it isn’t a deal-breaker either.

What about the authors?

Raphael Stricker is a disgraced hematologist who after losing his career to data manipulation took up the chronic Lyme disease banner. He is part of ILADS, which has been demanding that actual experts shut up and get out of the way so they can continue their evidence-free treatment of supposed chronic Lyme disease. Savely has written earlier crappy articles about morgellons. She is a nurse practitioner who “treats” people with “chronic Lyme disease” and morgellons.

None of this means the authors can’t do some serious science, though, so let’s look at the article itself.

The article starts with this:

Morgellons disease is a poorly understood multisystem illness characterized by stinging, biting, and crawling sensations under the skin.

That is an unfounded assertion. Morgellons is simply a label used by some for a set of symptoms. There is not, as of yet, any agreed-upon disease called “morgellons”. And where do they get their data? From the Morgellons Research Foundation, an organization founded by the person who named the disease. This foundation has not yet done any real science, and is not a valid source of epidemiologic data. Quoting MRF should be easy for Stricker, who is on their board.

The article then goes on to assert that morgellons is characterized by mysterious fibers under the skin. They make the same somewhat mystical assertion that is common on morgellons websites:

this material is often labeled as “textile fibers” on pathologic examination. However, a more thorough analysis of the fibers performed by the Federal Bureau of Investigation forensics laboratory has revealed that the fibers do not resemble textiles or any other manmade substance. In fact, the fibers are virtually indestructible by heat or chemical means, making analysis difficult by conventional methods.⁶

The citation for this rather bold and unusual assertion?

⁶Wymore R. Personal communication. May 4, 2009.

Yeah. Wymore is this guy in Oklahoma who is supposedly doing all sorts of groundbreaking research into morgellons, but somehow none of it gets published. He doesn’t happen to be a dermatopathologist or materials scientist or anything else relevant to the field, so maybe he’s just in over his head.

So apparently the purpose of this study was “to identify prevalent symptoms in patients with clinically confirmed subcutaneous fibers in order to develop a case definition for Morgellons disease.” Is it just me, or is that a bit circular? So how did they identify cases?

The convenience sample included all patients seen in the first author’s San Francisco medical office who met the inclusion criterion. The subject inclusion criterion was a positive examination for microscopic subcutaneous fibers as visualized by the first author using a 60 × handheld lighted magnifier. There were no exclusion criteria for the sample group because the inclusion criterion was narrowly defined to promote a homogeneous sample.

So the author, who works at a clinic that specializes in, among other things, morgellos as she defines it chose subjects who she thought had fibers in their skin. I look at skin every day. I’m no dermatologist—and I know it. I know that if I see something under the scope that looks funny to me, I need to call a dermatologist. I wonder if she sent any of these fibers to an expert (other than Wymore or TEH FBI!!!)? No?

As a brief aside, take a look at these images:

Image from the Savely and Strickland paper.

i-c9b997996624bbe6cf52815d726fd79f-neuroticexcoriation.jpg

Image from American Family Physician of “neurotic excoriation”

The authors of the morgellons study claim that the rash in their image occurs in area that cannot be reached by the patient. Compare to the photo of a patient with neurotic excoriations (that is, a rash caused by compulsive scratching). Both images are quite typical of “an outside job”, that is, they both look as if they have been chronically scratched. There is nothing in the morgellons patient photo that would argue against this.

I can’t go on much longer, because my brain hurts, but one of the most remarkable “findings” is this:

Sixty-four (52.5%) of the subjects had positive Lyme tests by Western blot. Another 44.3% (n = 54) were highly suspect for Lyme disease based on the presence of 5/7 of the defined criteria for a Lyme diagnosis, as outlined in the Materials and methods section. These results imply that 96.8% of the sample may have been infected with B burgdorferi [the organism that causes Lyme disease]

Fascinating. In 2008 there were 74 cases of Lyme disease reported in the entire state of California, and yet somehow, one nurse practitioner in San Francisco managed to find find 64 cases in a brief period of time. Remarkable.

This article is so remarkably bad it’s almost like they were trying to parody science. Please…don’t try any harder.

Comments

#1 Shay
May 13, 2010

The authors of the morgellons study claim that the rash in their image occurs in area that cannot be reached by the patient.

The patient is Venus de Milo?
#2 PalMD
May 13, 2010

Most people have an area on their back that is difficult to reach and it is often relatively spared from over-scratching.
#3 Due
May 13, 2010

I encourage you to be more open minded. My mom has been suffering from this for years. If you believe it to not be a real condition, perhaps you’d enjoy a stay at her house? (By the way, her husband has recently contracted it as well). You can see videos on youtube of fibers coming out of people, what more proof do you need?

After seeing your loved one suffer from this, then to have to read articles such as yours…UGH. I pray at night the naysayers wake one morning with a persistant itch that won’t go away.
#4 mxh
May 14, 2010

Due, I’m sorry for your mother’s conditions, but youtube videos and personal anecdotes is not the best way to learn medicine.
#5 Nathan Myers
May 14, 2010

Bad science is unfortunate wherever it occurs, but medical practitioners’ record of labeling real illnesses delusional is nothing to be proud of. For how many decades were chronic fatigue syndrome victims called lazy hypochondriacs, and the careers of those who hoped to study it blighted?

I don’t know whether it would be worse to be delusional or to really have itchy fibers growing out of your skin and people telling you you were delusional.
#6 howard.peirce
May 14, 2010

Due, delusional parasiticosis is a real disease. And it’s a real disease that can be effectively treated with real medication and real therapy. What more do you want?
#7 Mavin Forrest
May 14, 2010

No, why try to solve a mystery or cure anything when you can sit by and mock the people who are at least trying. Keep it up, armchair doc. I just wish you were sitting in that guy’s mother’s armchair. If you contracted Morgellons, you’d be singing a different tune and it would wail the smugness right out of you.
#8 Alisyn Gayle
May 14, 2010

When I first looked at the top picture, it resembled some photos I’d seen earlier in google images of mycosis fungoides lesions after having read this: Evidence of multiple infectious agents in mycosis fungoides lesions: http://bit.ly/ It was quite interesting.

Do you think the sensations may be as a result of neuropathology, some type of neuropathy, or that tick-borne disease patients may experience delusional parasitosis as a symptom of their infection?

One might think that the authors should have a problem making such claims about FBI investigations if they were untrue.

In understanding the “Lyme Community”, I believe that it would be very easy to gather evidence on a group of that size who happened to be commonly suffering a bizarre symptom. I am certain that very few in mainstream medicine would take them seriously once they “claim” to have Lyme disease and once they begin looking for answers, they very easily find others who have been having similar difficulties. Generally mere mention of the word “Lyme” tends to close minds very quickly & more often than I’d care to think about. Many patients have been caused great emotional harm by having the severity of their symptoms mocked & belittled.

There is a very powerful grapevine out there, growing daily via the Internet. You can search Google, Facebook or Twitter for the word “Lyme” & see how quickly word can spread to the masses. There are volumes of blogs and support networks spanning not just from coast to coast but internationally as well.

Did you know that more recently borrelia was found to be present in 80.9% of biopsies of the formerly “idiopathic” Granuloma Annulare? http://www.ncbi.nlm.nih.gov/pubmed/18616764

There have been times when we may not have known as much as we’d like to have believed we did, were there not?

By the way, May is Lyme Disease Awareness Month. Please protect yourself and your loved ones so that you needn’t know first-hand the experience of misdiagnosis, improper treatment, missed co-infections, inconsideration and emotional abuse that binds those in the Lyme Community to support each other.
#9 Steve Frey
May 14, 2010

All you would have to do is examine one individual with morgellons to know that it is real, why won’t you do this Doctor? What are you afraid of? If you are so certain that this illness is DOP then take the challenge and examine someone with morgellons, closely with magnification of 30x to 60x. Then you will actually have something to write about, until then you have absolutely no right to sit there and tell the rest of us that were crazy.
#10 Miguel
May 14, 2010

Why are you such a coward that you won’t give your name?
#11 Nathan Myers
May 14, 2010

Miguel: Making fun of a research paper isn’t the same as making fun of the subject of the research paper.

That said, everyone who presents with Morgellon’s certainly has a very distressing and poorly understood problem of one sort or another, and either way doesn’t deserve to be made fun of by medical professionals.
#12 bexley
May 14, 2010

great the morgellans crowd has come to play. Miguel what difference would knowing pal’s name make? surely its his arguments that are important. oh and I see you didn’t leave a surname
#13 David
May 14, 2010

I posted the article to this blog and I appreciate that Pal’s comments are not quite so offensive. I agree with him in his statements here.

Dont call something imaginary or fake. Point out the fact that the evidence of solid pathology is entirely absent.

I appreciated the efforts of the authors to collect information from patients but was also very disappointed in the paper that it really didnt say or conclude much of anything.
#14 Dianne
May 14, 2010

There were no exclusion criteria for the sample group because the inclusion criterion was narrowly defined to promote a homogeneous sample.

Heh? How does having no exclusion criteria promote sample homogeneity?
#15 catgirl
May 14, 2010

Nathan Myers,

Are you trying to say that delusional disorders aren’t real? You need to examine your neurological disease stigma, because it’s offensive to people who have delusional disorders when you imply that their suffering is somehow different from “real illnesses”.
#16 catgirl
May 14, 2010

After reading all the comments more closely, I noticed a very distinct pattern. The people who defend Morgellon’s all seem to think that delusional disorders are “fake” or not really disorders. It seems that your doubt in the reality of neurological disorders is the real problem here. You’re all a bunch of jerks for implying that delusional disorders are fake and trivializing the suffering of people who actually experience them.
#17 Vicki
May 14, 2010

With regard to “the patient cannot reach”: there are at least two ways the patient could reach those areas. One is to get a friend (partner, family member, housemate) to help. Most of us have, at some time, asked someone to scratch an area we can’t reach. The other is to use a device, whether that be a carved wooden back-scratcher or a cheap ballpoint pen with the cap on.

This is separate from figuring out the causes of the syndrome (or even whether all the people grouped under “Morgellon’s” have the same causes): whatever else is going on, we know that these people’s skin itches, so of course they scratch. Not scratching can be difficult and takes concentration.

catgirl has a good point: “I have an unknown skin disease” can be easier for people to accept or cope with than “I have a mental illness” or “I have a neurological problem,” because most of us identify with our brains more than with the rest of our bodies.
#18 SurgPA
May 14, 2010

@8 – You wrote: “Did you know that more recently borrelia was found to be present in 80.9% of biopsies of the formerly “idiopathic” Granuloma Annulare? http://www.ncbi.nlm.nih.gov/pubmed/18616764”

Kind of off-topic to Pal’s posting, but I did get a look at the abstract of the link (all I can get from this computer), and it looks like this study was actually focused on the viability of a particular testing method, not the incidence of borrelia in GA. I’m not sure the inference that 81% of idiopathic GA is due to borrelia can be made from this study. The authors didn’t seem to be making that inference. To quote: “CONCLUSION: FFM is a reliable method to show Borrelia in tissue sections of GA, which is more sensitive than PCR. This underlines the possibility that Borrelia are involved specifically in the aetiology and pathogenesis of GA.”

To repeat my caveat, I have only seen the abstract.
#19 JohnV
May 14, 2010

I took a quick look at the paper and the images of the fibers in the tissue are spooky but there’s no context to them so it’s really hard to know what to make of them.

Then we get to the table of comorbidities (leaving out the super high Lyme numbers):
(disease – # – % )
Babesiosis 22 18.0
Anaplasmosis 13 10.7
Bartonellosis 12 9.8
Ehrlichiosis 12 9.8
H pylori infection 3 2.5

Now, I may just be a lowly microbiologist and not an epidemiologist, but something looks off here. I know that H pylori carriage rates are higher than 2.5% (for non-gi referred children the rate of carriage was ~14% in this study PMID: 14572562, and the rate should increase with age).

For Babesiosis, most cases appear in the north east. In Connecticut, where it’s endemic, the seroprevalence in blood donors was 1.4%. So an 18% comorbidity of patients in CA would be a big deal. Of course, it is treated with antibiotics. And none of the morgellon’s syndrom sufferers reported taking an antibiotic.

Anaplasmosis has a reported incidence rate in CA of 0 per 1,000,000 people. In 2006 there were less than 700 cases reported in the entire country. So again, it’s pretty neat that this study found 13 people with it in CA. Of course, it is treated with antibiotics. And none of the morgellon’s syndrom sufferers reported taking an antibiotic.

Everything in the above paragraph is applicable to Ehrlichiosis as well.

I’m too lazy to look up Bartonellosis and at this point I’m well past the tl;dr mark.

But its REALLY interesting that these people found suspiciously high improbable incidence of tick-borne diseases in morgellon’s sufferers and yet not a single one of them was taking medication for the infections.

(Not to be completely flippant, but as a fat guy with short arms, if I were to scratch as much of my back as possible it would cover approximately the same area as the images above.

Actually maybe I don’t have short arms since some trial runs at my desk seem to indicate I have even more back coverage than what’s seen in those images. My coworkers are looking at me funny, too.)
#20 Karl Withakay
May 14, 2010

“Why are you such a coward that you won’t give your name?
Posted by: Miguel | May 14, 2010 3:26 AM”

Gee, I’ve never heard of anyone blogging under an online identity before. He must be a coward.

Your google-fu is weak.
(PalMD’s identity is not exactly a secret.)
#21 rob
May 14, 2010

galileo was ridiculed therefore morgellons is a true disease. plus i read about it on the internet. and my neighbor’s coworker’s dog groomer’s son is married to a woman who heard of someone that once had morgellons.

also, are we sure the FBI’s analysis of these non-manmade fibers doesn’t indicate extraterrestrial meddling with our socio-geo-political arenas? i mean, how else can you explain glenn beck and that volcano in iceland?
#22 PalMD
May 14, 2010

If they were real americans, they’d give the volcano a name we can say.
#23 daedalus2u
May 14, 2010

I agree with PalMD, this is a bad paper of poorly done research. Unfortunately it adds very little light to the discussion about the disorder some call Morgellon’s and perpetuates some unfounded (and almost certainly wrong) conclusions, even if we assume everything in the paper is correct and reported accurately. There are omissions which call into question the honest and complete reporting of the authors.

This criteria for inclusion was “clinically observed fibers”, and included 122 patients, yet there was no mention of a single microscopic image or mention of even a half-hearted attempt at analysis of these fibers. Are these investigators so grossly incompetent that it never occurred to them to try and figure out what the fibers were? Or did they try to find out but didn’t like the data they got so they didn’t include it?

It is not possible for a competent analysis of “fibers” to not conclusively identify them as living organisms if they are. It the fibers were potted in epoxy, microtomed into thin sections and then examined under light and electron microscopic examination; it is not possible to not identify them as living organisms if they are. If they are multi-cellular, then they must be eukaryotes (all multicellular organisms are), and so must have organelles (mitochondria, nucleus, etc.) which would unambiguously identify them as living organisms. If they are unicellular, there are still structures that will show up. If they are fibers that grew (i.e. hair or cotton), they will have very different appearance under polarized light than fibers that are spun (i.e. polyester or rayon).

So, either the fibers were not competently analyzed and so there is no data on them, or the analysis didn’t show what the authors wanted to put in their paper so they left that data out.

I find it very curious that there was no mention of antibiotics or topical medications in their table 3. The list of prior diagnoses (table 5) lists 40 patients having been diagnosed with scabies, lice, impetigo, or fungal infection, all of which have very effective topical treatments, none of which are mentioned.

There are reports that one of the authors “treats” Morgellon’s patients with long term antibiotics. Since this series of patients was drawn from the practice of the authors, it seems curious that there is no mention of use of antibiotics by any the patients. This is unfortunate because I think it is quite likely that prolonged antibiotic use is involved in the cause and maintenance of what is called Morgellons.

I have blogged about what I think it is:

http://daedalus2u.blogspot.com/2008/02/morgellons-disease-hallucinatory.html

I think it is low NO with the skin being the target organ.

The reason that antibiotics may be important is that some antibiotics work by interfering with protein synthesis of bacteria. The aminoglycosides (like streptomycin), macrolides (like erythromycin), tetracyclins, and chloramphenicol inhibit bacterial protein synthesis, they also inhibit protein synthesis by mitochondria and so can cause mitochondrial depletion. When there are not enough mitochondria, the remaining mitochondria get pushed to a higher potential where they make more superoxide. This superoxide pulls down the NO level, prolonging the low NO state. Since it is NO that causes mitochondria biogenesis, if the low NO state goes on for too long, it can become permanent.

A lot of xenobiotics can also cause a lower NO level by activating the cytochrome P450 system which then generates superoxide (the P450 enzymes are uncoupled, so that is what they do). Using topical agents that are metabolized by the cytochrome P450 enzymes in the skin would be expected (by me) to exacerbate low NO in the skin. Essentially any topical agent could do that.

Unfortunately this paper looks like it was designed to push an agenda, not inform the scientific community of new research results.
#24 JohnV
May 14, 2010

daedalus if it looked multicellular it could just be some bacteria in one of those stages of development (eg myxococcus fruiting bodies or streptomycetes in their fungal-like mycelia thingers) :p you’d still be missing organelles of course.

but yeah, sectioning and TEM would be really useful. we can add that to the list of things morgellon’s advocates should do but probably wont. they also should be able to extract nucleic acids and look at 16s or 18s sequences or whatever and see if anything besides human (18s) or mitochonria (16s) comes up.
#25 Mu
May 14, 2010

The reason there’s never any analysis done on the fibers is that those damned scientist always say “textile fibers” (the red white and blue stuff) or “glass fibers” (the chemically inert heat resistant stuff).
#26 JohnV
May 14, 2010

Right but then they’re always like “according to our “FBI” lab this is unlike any known textile” which is why a TEM image would be nifty.
#27 daedalus2u
May 14, 2010

Another thing that would be useful is to know what treatments did not work. If these 122 patients are being treated for Morgellon’s, what treatments are they being given and what of those treatments are working or not working. Presumably none of them have “worked”, or they wouldn’t remain patients.
#28 David
May 14, 2010

I don’t think anyone is suggesting that psychogenic diseases are not as significant as others, but rather to object to labeling something as delusional without evidence is as ignorant as to say it’s not.

As for Pal, I think he is stating that as a scientific practioner there must be evidence before making a conclusion. However, that is where I think where his education (or ‘intelligence’ as my read) has led him astray: he IS making a conclusion without any basis, simply because the fringe has piled on the list of symptoms, and the absence of conclusive evidence.

I’m fairly certain that Morgellons has been an easy crutch for DP, but that does not make an equivalence. In the case I saw, it was not DP but I cannot rule out that it was not psychogenic. The sores and discharge were as real as my hands and eyes could see. I made no diagnosis, no conclusions, I was not the one sick, but the medical community (and we saw everybody) had no answers, no remedies. We never said the word Morgellons for at the time didnt know the word existed.

At least Daedulus is trying to make a conjecture using analysis. I wish the medical community would do the same. The impromptu labeling that this blog has done a couple of times is just the myopsy that is preventing this condition or set of symptoms to be classified and remedied by the medical community.

I think it is so irresponsible to know that people are really suffering from common symptoms and objecting to people giving it a name. I know the medical community hasn’t named anything for it, at least not scientifically.

All they can do is to tell the patient that they are indeed not sick and if they dont like that, then say we cant help you.
#29 Jared
May 14, 2010

Wow, I so badly want to tear into this, but I will only add two points:

1) these “fibers” could easily be identified with only a microscope and GCMS (or even with just a few basic chemicals, a couple of enzymes, some flasks, and a Bunsen burner)
2) the “can’t reach these places” hypothesis fails for the only photos in this paper if you observe the severity (judged by scarring and lesions present) of the areas affected.
#30 daedalusu
May 14, 2010

David, you just can’t apply a “name” to groups of symptoms and call it a disease. Calling something a disease implies that you have a differential diagnosis and with that differential diagnosis comes differential treatment.

So far, I haven’t seen any diagnostic criteria for distinguishing what these people are calling Morgellons from DOP. The only criteria seems to be that the patients really don’t like a diagnosis of DOP and so they doctor shop until they get a diagnosis they do like. Is there a differential treatment that is effective for a treatment of Morgellons vs DOP?

An extremely common symptom of liver disease is skin itching (I think by the same final common pathway, low NO in the skin). A very effective treatment for that skin itching is Sertralin, an SSRI. The skin itching that accompanies liver disease is not called DOP and it is effectively treated with an SSRI. I suspect that some fraction of patients with what they call Morgellons will see improvement in their skin itching if they are given an SSRI. I suspect that the mechanism for SSRIs improving the itching of liver disease is through improved regulation of serotonin activation of mast cells in the skin.

I think it is unfortunate that patients may not be given effective treatment because SSRIs are considered psychotropic drugs and to some people being treated with a psychotropic drug is equivalent to being labeled “crazy”. Allowing patients to dictate treatment because they don’t “like” the diagnosis is unethical and is malpractice. It is unethical and malpractice no matter how much they are suffering and no matter how much you want to help them. Rigorous application of SBM protects both patients and clinicians from letting their feelings and their desire to help lead them into doing things that are not in the patient’s best interests.

A diagnosis of DOP does not mean you have “nothing wrong with you” or that “you are not sick”. It means you have DOP which does have effective treatments. Quacks are doing patients real harm if they take patients with a real diagnosis of DOP which can be treated and then give them a faux diagnosis of Morgellon’s which cannot be treated. A diagnosis of DOP can be very difficult to accept, especially when the brain fog makes it hard to think. SSRIs improve the brain fog too, by reducing mast cell activation in the brain. Reducing mast cell activation in the brain reduces neuroinflammation, and improves NO levels in the brain. I suspect that may be part of the actual mechanism for SSRI antidepressant action.
#31 David
May 14, 2010

Jared,

The ‘cant reach places’ argument carries no water and I dont know who the woman in the picture is.

I can say as strongly as I can that in my observed case, they were not created by external sources. They were due to a conditional state of the body. I was with the person at all times for months on end.

You could see the beginning of the lesion and within a couple of hours it would open and ooze. There was no scratch patterns and there hundered, on feet, back, crotch.

I am certain I can’t speak for every case, nor convince others I am not correct but I can do one thing: not say what it was but say very clearly and concretely what I witnessed.

To me in retrospect, I think the skin was a symptom and not the cause. I am not a doctor by any means but this issue just looked dermatologic but that didnt seem the cause.
#32 David
May 14, 2010

Daedulus,

I do like your approach and appreciate your response. I am not calling anything a disease at all. I think that is PalMDs issue: people are calling it a disease.

All I am doing is saying is that my family member had the exact symptons that people are attributing. No doctor told us anything about DoP, and my reading on that doesnt fit what I observed. There wasnt a sense of itching but real observable phenomena.

I dont want to be labeled as what Pal objects to, making any conclusion of what it was.

No one is objecting to DoP because not one Dr or specialist even mentioned to us: the medications were anti-biotics, anti-fungals, sulphur creams, de-wormers. The treatment was anti-parisitic but I am not convinced it was parasitic because none of that worked.

I know that no one can trust the observations of another but there was a lot of discharge from the skin, the oddest being a powdery or smudgy soot that would remain in the tub after bathing. It would kind of rub off the skin. It was not dirt.

Great, now I looking like a crackpot.
#33 Terrie
May 14, 2010

@catgirl/i5. I think you’re right. There’s a lot of stigma for psychogenic illness coming from the Morgellon’s crowd. It’s rather insulting to the people who accept and live with their psychogenic illnesses. For instance, I have panic attacks. No doubt that they’re triggered by my mind. But there’s also no doubt that the racing heart, sweating and such are very, very real. The first time I had a panic attack was really scary, but when the doctors told me there was nothing physically wrong with me, rather that the source was in my mind, I felt relief, instead of being insulted. Which was good, because it meant I could get right to work addressing the issue, rather than wasting time going from doctor to doctor.
#34 SurgPA
May 14, 2010

@31 – David wrote “You could see the beginning of the lesion and within a couple of hours it would open and ooze. There was no scratch patterns and there hundered, on feet, back, crotch”

If this is truly the case, it should be simple enough to set up a video camera and document the time course of development to eruption. You say there were hundreds. How about having the afflicted individual lie prone with a camera focused on his/her back and roll film (figuratively, of course)? Given the stigmata surrounding this, I would think the subject would be more than willing…
#35 DrugMonkey
May 14, 2010

stigmata

A revealing typo there, SurgPA?
#36 Nathan Myers
May 14, 2010

catgirl: You seem to be suggesting that the symptoms experienced by the delusional must themselves also be considered to designate real illnesses, and therefore not be distinguished from real illnesses like CFS. Your very natural confusion does not excuse calling more careful people jerks.

(I do not assume that everyone who presents claiming Morgellons is in fact delusional, or that none are.)
#37 Steve Frey
May 14, 2010

Doctor PalMD, you say that you aim to change the world, well start right now and accept my challenge to fully examine an individual with morgellons, just say the word and I will begin the search for someone that is in your area, let’s settle this once and for all. I honestly don’t see how you are qualified to even comment about the validity or this illness if you have not examined anyone with it.
#38 SurgPA
May 14, 2010

Touche DM, Touche! Of course, I meant stigma.
#39 PalMD
May 14, 2010

Steve, I would encourage anyone with a severe skin disease to see a dermatologist. I am not a dermatologist and cannot diagnose and treat serious skin ailments. Most internists are able to deal with minor skin problems and are able to tell when they are in need of an expert.

That being said, one doesn’t have to be a dermatologist to critically evaluated the literature.

People suffering from “morgellons” are suffering…that cannot be disputed. I suspect that these patients represent a heterogenous group of problems, as is the case in many syndromic illnesses. And if some of them have a “psychogenic” component, the illness is no less real, nor is the suffering.

But to encourage hope based on false premises and improbable ideas is cruel. It is un-physicianly. It is inhumane.
#40 Claire
May 14, 2010

PalMD –
I hope you take the above offer from Steve Frey seriously. Furthermore, once you extract some of these fibers would you please conduct, or have conducted, the tests recommended in various posts above, such as TEM image, FTIR, etc?
Let’s not have this be a battle of wits; let’s give this a serious and unbiased look.
Heaven forbid this should be an actual physical disease, shouldn’t the medical world know about it? Especially if it is communicable?
#41 PalMD
May 14, 2010

The medical specialty of pathology evaluates human biopsy specimens. It would appear from looking through MRF and others morgellons literature that when qualified pathologists have seen the material, the usually attribute it to common fibers or inflamed skin. The fact that they are not believed does not change the results.
http://scienceblogs.com/whitecoatunderground/2009/05/morgellons—what_fibers.php
#42 Steve Frey
May 14, 2010

Doctor, my aim here is to change the mind of an individual that is doing tremendous harm to a great many others, whether he realizes it or not. It is obvious that a good number of people read what you write, what if your wrong about morgellons, what if your blog adversely affects the life of just one person and you end up being wrong?

What about having a Derm perform the examination with you present? Surely you could arrange that couldn’t you?

Now is your opportunity to change the world Doctor, and if a challenge is something you seek we’ve got just the thing for you.
#43 PalMD
May 14, 2010

I’m not sure what my sitting with the dermatologist and pathologist would accomplish. I strongly encourage anyone with a skin disease to see someone who specializes in skin diseases. That’s how we do things. In medicine, we make clear what our limitations are. Not only would it be inappropriate for me to comment on a specific case, but it would be inappropriate for me to represent myself as a clinical expert in dermatology. We already have experts for that. If they don’t give the answer you want, that is difficult, but that is life. Truth doesn’t always bend to our wills.
#44 Stev Frey
May 14, 2010

I’ve been trying to get you to accept this challenge Doctor not to prove you wrong but rather to win your support because I know for certain that if you were to see this stuff with your own eyes you would change your mind and the challenge alone would have you hooked. The problem with the Derms is that they won’t look, I know they supposedly don’t look for a reason but if you don’t look how can you see. They few Doctors that do support the morgellons community are the ones that have looked. Why do you think those Doctors believe morgellons is more than DOP? Do you believe they are just looking for publicity or that maybe they are just incompetent?
#45 daedalus2u
May 14, 2010

As a non doctor, it seems pretty clear to me that this is a multi-system disorder. Thinking of it as “only” a skin disorder, or “only” an infection, or as “only” a psychiatric issue is to have too narrow a view of it.

Medicine does not do well with complicated multi-system disorders. This is an inherent problem that occurs because physiology is really really really really really really complicated. We don’t know 99.999% of how physiology works. We are fortunate that evolution has configured it to be extremely robust and to work extremely well. Evolution did that with systems that are coupled and non-linear and so are intractable to model and analyze except in simplistic terms.

Good doctors (like PalMD) know that, and know their limits. Fools and quacks do not. The saying “fools rush in where angels fear to tread” is true in medicine too. Quacks will treat things they have not the slightest understanding of. Good doctors won’t. They are professionals, they know their limits.

Steve, Pal seeing it with his own eyes would not change anything. He knows he does not have the expertise to recognize something “with his own eyes”. Knowing your limits is something extremely important to learn. Once you have learned it, it is not something you want to lose.
#46 Steve Frey
May 14, 2010

I admire your wisdom dsedalus2u, as well as your style, so well put.
#47 Mr. Common Sense
May 14, 2010

Hey PalMD ol’ buddy. You had to open this can of worms (pun intended again didn’t you). But seriously, I thought I’d let you know I no longer have Morgellons, it took three years from the onset but it is gone.

I did by using through all natural products, like NAC (amino acid), Magnesium, still other amino acids, MSM, and just a whole host of things. Anyway, I used well known, safe, natural supplements in the end, most with backing pubmed articles, and that is the way to go for those suffering from this. Do no harm, don’t sit around and dwell on parasites and live in fear, reject that, no matter what it is you can get better, maybe not completely cured but you can get your life back, I did and I was pretty bad off at one point. God bless all those with this terrible thing.

Mr. Common Sense
#48 Sam
May 15, 2010

You have no idea the pain and suffering that I have been thru with this malady. I will not give it a name but it shold be called THE DESTROYER. It has baffled me for 38 years, the first symptoms were exzema, hair loss, rashes, itching you can not discribe. The itching can be whole body or just an area, inside the ears is the most prolific. I caught this while in Asia doing a stint in the US Army. Paying attention to my whole body since its inseption has given me some insight about the condition, still I know little. These so called lesions are really not a lesion at all, they have layers of material, bright red shiny tiny orbs with a sheath of white plastic like material under, it is thick and indestructable, you can see the white material under that womans skin in the picture. These manifestations also have a central blood feed vein, the bigger the Lesion/Tumor the bigger the blood feed line. If you allow the yellow fluid that flows from these things to harden up you will soon see the fibers developing, fibers can be found in the blood urine and feces. I know I look all the time with a microscope. There is systemic involvment, possibly a symbiotic relation to other maladys and or lowering of the immune responce allowing other opportunistic disease to take hold or further know disease’s. You keep saying none of these people have taken antibiotic treatment, you are more than wrong in that assumption, most have been on any and all antibiotics, they have seen every doctor in the yellow pages, doctor shoping, that is sad. Most women and dome men connect itching with bug bites, after all manyof these tumors break the skin after the apperance of a tiny red dot. The red dot I am talking about is directly over the blood feed vein in the, lesion/tumor. Some times it will have a very tiny scab if the scab is removed, the spot will bleed like you have shoved a nail deep into your body and pulled it out, the blood will gush out, taking a very long time to stop. There is so much to tell it would rake days if my memory would allow. Dermatologists are NOT the answer for this malady, it is a internal long term disease, that is why so many are older, but now, many are being born with it. People do not have to have the outward signs to have this, most symptoms are minor, right up untill the immune system says, I can not take anymore. I am better now, but I was the poster child, antibiotics and steroids brought me to deaths door, no longer could I function, sold my business and went home to die. Lucky for me I had some money and time to heal myself as quite literally, doctors and their drugs without diagnosis made me sicker. You know some of these people do say some quite fantastic things I must admit, many see this and that, and call it bugs. I have not seen any bugs, that is except for a microscopic parasite in my urine and I do have video of it moving. Maybe you need to talk to a few members of the http://www.morgellons-disease-research.com/Morgellons-Message-Board/ site. I am on MDR as Baraka Obam there is alot you do not know, just leave me a message. Try not to imagine I am a fool from my misspelling of words, one thing that this attacks is the eyes!
#49 Dangerous Bacon
May 15, 2010

“They few Doctors that do support the morgellons community are the ones that have looked. Why do you think those Doctors believe morgellons is more than DOP? Do you believe they are just looking for publicity or that maybe they are just incompetent?”

Excluding the possibility that a few of these practitioners may really believe they’re onto a new and real disease, the reasons that a handful have latched onto “investigating” and treating Morgellons includes publicity-seeking (and being in love with being viewed as a Brave Maverick Doctor Bucking The Establishment). There are those whose mindsets and practice parameters embrace various forms of quackery. As for others it’s hard to say what motivates them. I recall reading the online testimonial of one physician who believed he had Morgellons, and who resented the implication that he could actually have delusional parasitosis. He revealed that he had consulted with the psychiatrist who was treating him for obsessive-compulsive disorder, and had been reassured that he was not delusional.

I will be very, very, very surprised if the CDC issues a report concluding that Morgellons is a discrete illness with a defined etiology. What I suspect will happen is that the CDC found that in a small percentage of the cases it investigated, there were unsuspected and undiagnosed disorders, including commonplace and unusual internal medical complaints with skin manifestations, to known infectious diseases. Most cases will not have a ready diagnosis. Some will be classifiable as delusional parasitosis. There may well be some unexplained immune/metabolic abnormalities among the population studied, which won’t be diagnostic of anything. In the end, it’s probable that the authors will call for more research (and the CDC will hope that’s enough so that the pressure from the “Morgellons community” and Congress eases).

This is an interesting article about Morgellons and how one factor in the spread of this ailment seems to be…the Internet.
#50 Marge Ellan
May 16, 2010

All of the speculations and the name calling aside. What I see coming out of my body is real. It is large and can be seen by the naked eye. It is affected by antihelmentics. Ivermectin does help this condition.
This is a miserable condition and it is definitely real. It is entirely unfortunate that you keep submitting misinformation about this disease. You create more pain for the suffering by doing so. Don’t you have a conscience? You seem to be on an actual hate campaign against these folks.
Why? You are not helping anyone but yourself. Is it the attention you seek? I guess it is working. You are pathetic.

Marge
#51 David
May 16, 2010

SurgPA,

I am sure any patient would gladly submit to any videotape or anything to help study the symptoms. However, your comment ‘if this is truly the case,’ as if it is hard to believe, or simply doubting the credibility of an average observer. Don’t you notice the similar comments of others just the same? One post talks about little red dots or pimples that open and release, that is simply what I observed. I am also throttling my comments because those in pain and sharing more than me, because it does seem unbelievable: sores, discharge, strange materials, sharp like pain from the material.

It is one year out since the last real outbreak, although there is occasional small relapses. But what would have we done with the video? We were already seeing multiple doctors and were on mulitple medications. They saw what was going on but the remedy and diagnosis kept changing and I truly doubt the Md’s were being overly scientific: first bed bugs, then scabies, then Norwegian scabies, then ultra resistant crusted scabies, then we’re not sure. Antibiotics, de-wormers, pesticides, to no avail. How would a video change anything? Also, we didnt know what we were dealing for we were in good hands already, right?

I was not sick in any fashion nor affected by the internet because of lack of knowledge at the time.
#52 JohnV
May 16, 2010

@marge

“This is a miserable condition and it is definitely real”

NO ONE IS SAYING ITS NOT REAL. WHY IS THIS SO HARD FOR YOU PEOPLE TO UNDERSTAND?

@sam

“You keep saying none of these people have taken antibiotic treatment, you are more than wrong in that assumption,”

Maybe you should read the article Pal linked to? The statement that none of the morgellons sufferers were taking antibiotics is based on data presented in it. We’re not making that up. THe authors reported that aside from morgellons the individuals were diagnosed with a variety of tick-borne infections. These infections are all treated with antibiotics. In another table in the paper, the authors list medications being taken. THERE ARE NO ANTIBIOTICS LISTED. If you have a complaint with this, blame it on either patients not being honest or authors not being honest. No one commenting on this blog made up that statement, it came from data presented in the paper.

I’m willing to blame the authors as its highly unlikely that in CA, with an incidence rate of 0/1,000,000 population, they have encountered this cluster of tick-borne infections.
#53 LadyDay
May 16, 2010

What I wanna know is who the hades “peer-reviewed” that crap. Seriously.
#54 PalMD
May 16, 2010

@LadyDay

For reasons unclear to me, none of the folks who report a serious interest in morgellons have published anything beyond this sort of thing. The journal is designed for rapid communications rather than quality. It would really be a simple matter to develop an operational case-definition, recruit a cohort of morgellons sufferers, and gather clinical an pathological data.

My suspicions are that 1)Many are a bit put off by doing this as it seems to them obvious that there is clinical entity to match the name “morgellons”; 2)Some have done this but didn’t like the results; 3) Some of the papers were so horrid they could not be published.
#55 Dangerous Bacon
May 17, 2010

Here’s an interesting example of the type of physician that someone who believes they have Morgellons might consult.

Note the sorts of conditions this doctor advertises that he treats, the use of testimonials on the website, and the disclaimers, including one stating that many of the specialty recognitions after his name (MAR? PA?) come from private organizations not recognized by the American Board of Medical Specialties. Also he states that he has been honored as one of the Best Doctors In America*, although his website also includes the disclaimer that he is not calling himself smarter than or superior to other doctors, whose knowledge he derides on the same website page.

*there are supposedly 50,000 doctors on the rolls of this organization, whose selection methods seem a bit vague to me.
#56 Terrie
May 17, 2010

@Nathan Myers/36. I have a psychogenic disorder — panic attacks. Are you saying that because there is no physical cause that I don’t have a real illness?
#57 PalMD
May 17, 2010

@Terrie

I feel ya. I have a problem with taking disorders that may have their origin in the brain and saying that they are somehow less real than disorders that occur below the neck.
#58 Nathan Myers
May 17, 2010

Terrie: No. In that context, if, during a panic attack, you were to fear attack by whoever was nearby, it would not mean that they are in fact a danger to you. Your and catgirl’s confusion is common, and probably as much a consequence of difficulties in the language as of reasoning difficulties.
#59 Terrie
May 17, 2010

Nathan, do you even know what a panic attack is?! It is NOT fear of attack. In my case, symptoms of a panic attack include: shortness of breath, elevated heart rate, dizziness, blurred vision, nutcracker esophagus, sweating, nausea and headaches. I suggest that you are confused, not me.
#60 PalMD
May 17, 2010

I think that Nathan hasn’t read much on panic disorder or panic attacks. I think he pictures a panic attack as an unreasonable fear of a specific environmental element as opposed to the complex physiologic reaction that it really is.
#61 DPSisler
May 17, 2010

I looked at the first picture before reading your explaniation and my first thought was “Hey, that looks like my skin with psoriasis after I scratch and pick at it”
#62 Nathan Myers
May 17, 2010

Not everyone who suffers panic disorder has read much on it.

It’s common for people to blame their immediate surroundings for changes in their feelings, moreso in some disorders than in others. Paranoids distrust passersby. My analogy for the case of panic disorder may have been strained, but the point should have been clear. When we treat paranoids, we don’t also need to arrest their neighbors for spying. A patient suffering formication needs help, but does not also need subcutaneous delousing. This concept really should not be especially difficult.
#63 madder
May 17, 2010

@DPSisler:

Your first thought was similar to mine: “oh look, it’s exactly where she can reach.” Imagine my surprise upon reading that the articles’ authors insist that the lesions occur in areas that cannot be reached.

Then I thought about it for a second, and my surprise disappeared altogether.
#64 Steve Frey
May 18, 2010

Watch this video and tell me that there is no organism moving amongst the classic red and blue morgellons fibers, this specimen is from a fellow morgellons sufferer.

http://www.youtube.com/watch?v=wv_LI9ZeKnk
#65 Tsu Dho Nimh
May 18, 2010

@64 – Steve … What is the source of the specimen, how was it collected, and how was the specimen prepared? What magnification are they using, what kind of lighting, how were the slides and cover slips (if any) cleaned and stored? What was the mounting media?

Without that information, videos and photos are useless.

As a medical technologist, I spent hours looking through microscopes at bodily fluids and skin cells … there is a lot of crap on any microscope slide unless you take incredible precautions to get rid of all the particles.

What I have seen at Morgellons’ sites looks like they usual detritus and debris that is floating around any household, landing on any skin, and found in any ordinary water. I see what appear to be shed skin cells, bits of hair with cuticles, synthetic fibers, drying plasma proteins, etc. There’s a lot of strange-looking artifacts in anything.
#66 daedalus2u
May 19, 2010

Fluctuations in water content due to changes in humidity can cause thin water absorbing objects to move as one side expands and the other side doesn’t. This is the mechanism behind the red cellophane fortune telling fish.

http://magicshop.magictricks.com/Fortune-Teller-Miracle-Fish-Pack-of-10_p_190.html

The movement can be quite vigorous.
#67 Tsu Dho Nimh
May 19, 2010

daedalus2u … That video has a small unicellular organism moving around. The movements remind me of Euglena or other unicellular critters that can be found in almost every bit of water everywhere.

If those things were consistently found in lesions from Morgellon’s patients, we wouldn’t be reading this blog post.
#68 Steve Frey
May 19, 2010

Tsu, based on your comments you must be at least a little curious about this morgellons issue, am I correct in this assumption? I am a very intelligent individual and have spent the past three and a half years researching primarily marine organisms, admittingly I am not a Scientist but IMO I am on my way to becoming one. Regardless of what popular belief maybe, please have the courage to think for yourself and have an open mind about this issue. The morgellons community needs professionals to get involved and I would appreciate the opportunity to converse with you privately on this issue, I give you my word that it would remain between the two of us. You can email me at Stevluvsu2@yahoo.com.
#69 Venetia
May 22, 2010

Quoting MRF should be easy for Stricker, who is on their board.

above: Palmd

Do some fact checking before you post glaring errors in your diatribe Palmd-

Dr Stricker is not on the board of the Morgellons Research Foundation and has not been for some time.

As a professional, mis-quoting pertinent facts to build your case has the opposite effect
as relates to believability.

Bad journalism, done badly. It’s bad.

Do you ‘practice’ medicine in the same manner?

http://www.morgellons.org/boardmembers.htm
#70 Steve
July 10, 2010

Doc, do some real science yourself and examine a real patient with the symptoms. Easy to sit in your office and theorize! You can’t become a good doctor reading books either. I have seen this first hand (friend) and it is real, whatever it is, not DOP