Jan 22 2008

Morgellons

Recently, the Centers for Disease Control and Prevention (CDC) decided to launch a detailed study into the nature of Morgellons, also known as unexplained dermopathy. On their website they write:

Considering the complexity of this condition, we believe that a measured and thorough approach offers the best chance for finding useful answers. To learn more about this condition, CDC is conducting an epidemiologic investigation.

Morgellons is certainly a very interesting medical entity, as the many questions I have received about this enigmatic condition indicate. Briefly, those who suffer from Morgellons have a chronic sense of itching and tingling under their skin. This sensation leads to scratching. The dermatological manifestations include open sores, and there have been reports of strange fibers extruding from these sores. Sufferers also often exhibit psychiatric symptoms, such as anxiety.

There are two schools of thought about what is the true nature of Morgellons. One side, including the Morgellons Research Foundation, advocates the position that “Morgellons disease” is an infectious disease, primarily a skin infection. The infection leads to the itching sensation, the sores, and the strange fibers. The constant irritating sensation also leads secondarily to the psychiatric symptoms. They cite evidence linking Morgellons to Lyme disease, and note that sufferers often respond to prolonged antibiotic use.

The other side believes that the psychiatric symptoms are primary, a form of delusional parasitosis – or the belief that one is infected with parasites. The skin sensation is therefore a somatic (sensory) delusion, leading to chronic itching that causes the skin manifestations. The strange fibers are simply fibers from clothing worked into open sores, and sometimes even healed into healing sores. Analysis of the fibers has shown that they are often consistent with various textiles, and that they are not biological in nature. Any bacteria found in the sores are incidental and not causative, and response to antibiotics is incomplete which is more compatible with a placebo effect than a true antibiotic effect.

Those are pretty stark battle lines, but fortunately they lead to very distinct predictions. It should, therefore, be possible to sort out which hypothesis is correct with fairly objective evidence. This kind of debate happens within medicine all the time, and eventually they get sorted out with evidence. The CDC investigation is not likely to be definitive by itself – but it seems that it will add significantly to the discussion.

Which side is more likely to be correct? First, I think it is important to note that neither side can be ruled out a-priori. It is certainly possible that an unknown infection (or other etiology) is causing chronic pathological itching in the skin. This can be what we call a neuropathic symptom – inflamed, damaged, or otherwise irritated nerves endings can generate abnormal sensory signals that are either painful or feel like itching or tingling. This then leads to scratching and all the other manifestations of Morgellons. This is a plausible scenario.

However, we must assess the fibers as a separate question. I think the only plausible explanation for the presence of fibers in the lesions is that they are from clothing. I do not think we need to hypothesize any exotic biological process to explain the creation of these textile-like fibers.

I also feel that the delusional parasitosis hypothesis is also very plausible and can explain all aspects of Morgellons, as I noted above. The evidence that proponents of the infectious hypothesis point to in order to claim that a primary psychiatric disorder is not a viable explanation is primarily the apparent response to antibiotics. However, this is far from definitive.

I am suspicious of a partial and temporary response to antibiotics. I think this is more likely to be a placebo effect. It is very interesting that proponents link this to Lyme disease, since there is a similar grass roots organization of patients who believe they have chronic Lyme infection and need prolonged antibiotics that produce a partial and temporary response. The linking of one dubious chronic infection to another does not add credibility to the infection hypothesis. (Note that I am not questioning the legitimacy of Lyme disease itself, just a chronic undetectable form of the disease that requires prolonged antibiotic therapy. Here is a more thorough treatment of this topic.)

Finding bacteria in the wounds of some Morgellons patients also is not very convincing, since any open skin lesion is likely to be teeming with bacteria.

We must also consider that there may be some truth to both hypotheses, or that different patients identified as Morgellons may have different entities – it may not all be one diagnosis. So perhaps some patients have delusional parasitosis, while others have a chronic itching type of neuropathic pain syndrome. At this point I am most suspicious of the fibers as evidence – as I stated I think they are just fibers from clothing. I am also not convinced by the evidence so far for an infectious cause.

It is important not to commit prematurely to either hypothesis nor to oversimplify – typically in medicine the full story turns out to be more complex than anyone initially thinks. It can be counterproductive for proponents of the delusional parasitosis hypothesis to fail to consider other possibilities because they are put off by fallacious arguments on the other side. It is also counterproductive for proponents of the infectious hypothesis to dismiss skepticism as closed-mindedness rather than a pathway to the truth, and I think that many of them are falling into this trap.

For example, here is an exerpt from an editorial published by William T. Harvey, a member of the medical advisory board of the Morgellons Research Foundation:

Serious students of the most basic sciences learn early that reality is the singular essence of each. “Truth” in this context is simply a semantic label given to current human understanding of that reality. Human truth never reaches reality, but as the Ancient Mariner, drifts forever, perhaps asymptotically approaching what is real. So it is with medical truth. Yesterday’s texts are already trash, placing an enormous burden on each of us to look beyond our passed-on guidebooks, created as best they could be with the tools and knowledge available at the time.

He uses this high-handed discussion of “truth” as a basis to criticize all those who would dare to be skeptical of the infectious hypothesis. It sets a tone for counterproductive confrontation – not consensus building through objective research.

I also think that at this point using the term “Morgellons disease” is premature and counterproductive. The term “disease” should be reserved for pathophysiological entities – where we have a known cause of a specific syndrome. What we have now is at best a clinical syndrome. Terminology in science is important, for it can often constrain our thinking about a topic. Proponents of the infectious hypothesis are trying to achieve through terminology what they have not yet achieved through scientific research.

At this point my personal bias is that Morgellons will turn out to be mostly a primary psychiatric disorder. It is possible that some people with this label may turn out to have a chronic neuropathic syndrome, which may in turn have one of various causes. I give the infectious hypothesis a low probability at this point, I think the pattern is most consistent with a cultural phenomenon – a belief promoted at the grass roots level, aided by the Internet, driven more by belief than evidence and developing an unhealthy resistance to skepticism.

However, I am also completely willing to change my mind as new evidence comes in. Researching Morgellons can theoretically be useful to resolve the debate. However, the rhetoric of the believers is concerning as it reminds me of other situations in which a specific belief or hypothesis became embedded within a group of proponents prior to being established scientifically. The group then becomes invested in the belief and is therefore highly resistant to change.

They will likely have their day of reckoning – when fairly definitive evidence calls into question the infectious hypothesis. At that time they will either stay true to science and adapt to the evidence, or they will declare themselves to be a fringe ideological group (as have, say, those who believe thimerosal in vaccines causes autism). History teaches pessimism – but we’ll just have to wait and see.

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20 responses so far

20 Responses to “Morgellons”

  1. Badon 22 Jan 2008 at 2:23 pm

    It’s worse than them merely taking anitbiotics: many have been taking products made for animals, in this case, for fish.

  2. royalgeekgon 22 Jan 2008 at 4:39 pm

    Has the neuropathic syndrome theory been researched at all? A google search of the terms morgellons and various neuroimaging techniques has yielded nothing, and the articles have focused almost exclusively on the dermatological aspects. You would think, since one of the main theories is that the phenomenon has a psychological/neurological etiology, that someone would have looked into that…

  3. Blake Staceyon 22 Jan 2008 at 4:52 pm

    The zaniest thing about Morgellons may have been the time when somebody said the whole thing was made up as a viral marketing campaign for the movie A Scanner Darkly (2006), based on the Philip K. Dick novel of the same name. Of course, this led to the counter-accusation that the original accusation was itself a viral marketing campaign. . . pile on enough meta-levels, and it has to be true!

  4. fontinalison 22 Jan 2008 at 5:26 pm

    I hadn’t heard of this phenomenon until it showed up in last Sunday’s Washington Post Magazine, but now it seems to be everywhere. Truth or fiction, let the “availability cascade” commence.

  5. Steven Novellaon 22 Jan 2008 at 5:45 pm

    Regarding neuropathic research with Morgellons – not that I know of. I would love to treat some of these patients with medications that treat neuropathic pain specifically, to see what effect they get. I have never seen a patient, however, so have not had an opportunity to do this myself. The problem may be that they are going to dermatologists not neurologists. I will ask around, though.

  6. daedalus2uon 22 Jan 2008 at 7:45 pm

    I suspect it is due to low NO, and would show white matter hyperintensities via neuroimaging. Major symptom include fagigue, cognitive dysfunction and aerobic limitations. It sounds to me like chronic fatigue syndrome but with severe itching which gets interpreted as “something” in the skin.

    I am working on a post on it. I think low NO does explain all the symptoms (except for the fibers) with only modest handwaving.

  7. MCRISLIPon 23 Jan 2008 at 12:09 am

    I cannot speak as to the eitiology of this disease in general, but all the Morgellons that have come my way have been delusional.

    the fibers are usually cotton or other threads, never any biological when you look at them under the microscope

    the ulcers are self induced from scratching

    the symptoms usualy fail to follow known anatomical pathways

    they have the idee fixe of the delusional.

    I will be shocked if this ever turns out to be anything infectious.

  8. skidooon 23 Jan 2008 at 7:55 pm

    If the open sores result from scratching as a response to a psychiatric condition, and those sores become infected, wouldn’t they likely respond to antibiotic treatment anyway? Any clearing up could possibly be mistaken for (at least partially) successful “treatment.” Or am I over-simplifying things?

  9. daedalus2uon 23 Jan 2008 at 11:25 pm

    I think the use of antibiotics is to counter the major symptoms, fatigue, itching, “brain-fog” and not acute infections of skin lesions.

    I suspect that the effects of chronic antibiotic use may be real, but are a Jarisch-Herxheimer reaction to microbial debris from lysed commensal bacteria in the gut (or elsewhere). In many uses of antibiotics to treat infections, particularly with penicillin or cephalosporins (antibiotics that target cell wall synthesis), the bacteria break open and “spill their guts” (so to speak). These bacterial products are highly immunogenic and can cause acute and extremely severe reactions (that can easily be fatal).

    The Jarisch-Herxheimer reaction is quite generic and can happen with any treatment of any internal infestation of anything, including malaria or parasitic worms. If you have a high infectious load, treatment can be very dangerous.

    I think that chronic antibiotic use stimulates the production of iNOS and NO via the Jarisch-Herxheimer reaction from gut bacteria. It is hard to imagine how the antibiotics could be affecting anything else. If it was an “infection”, it would be cleared and chronic use would have no effect, or they would become resistant and the infection would get worse. There are better ways to increase NO levels.

    I am working on a blog which explains this in more detail and how it fits with Morgellons. I think this is the mechanism (NO from iNOS) which explains the resolution of autism behavioral symptoms during acute fevers (which I have blogged about already).

  10. [...] Dr. Steven Novella has also recently written a blog entry on Morgellons over at NeuroLogica Blog. [...]

  11. daedalus2uon 16 Feb 2008 at 11:54 pm

    I have finally posted my blog on Morgellons.

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

    I see all the symptoms as being consistent with low NO. This causes an over activation of the immune system (very simplistically) and low energy status. In the skin that leads to itching. In other tissue compartments other symptoms.

    I think the effects of antibiotics are mediated through the Jarisch-Herxheimer reaction. When bacteria are killed, the dead bacteria are highly immunogenic and cause an immune response. I think this comes from killing of gut bacteria. The immune response causes the expression of iNOS which generates NO which partially resolves the low NO status. But iNOS is only around temporarily when it is gone the low NO status comes back.

    I see the symptoms of severe itching as very much like the itching of chronic metabolic stress of liver failure, kidney failure, and cocaine abuse.

    I see the vision changes as like the vision changes due to metabolic stress in the brain from cocaine abuse, amphetamine abuse, and alcohol withdrawal.

    I see the mental symptoms as like those of white matter hyperintensities. I might even expect that the mental symptoms would get acutely better during an acute fever, as the symptoms of autism get better during a fever. I am quite sure that an MRI would show white matter hyperintensities. People that are helped by chronic antibiotics would likely be helped by any acute immune system stimulation (but that may activate the “low NO ratchet” and perpetuate or exacerbate symptoms long term).

    http://daedalus2u.blogspot.com/2008/01/resolution-of-asd-symptoms-with-fever.html

    I would think that a course of “fever therapy” might actually be curative (but I would not suggest or recommend that anyone do such a thing, there are too many adverse effects).

    I see Morgellons more as a hallucination, analogous to phantom limb pain. The hallucination comes from the skin, not the brain.

  12. ladycoloradoon 21 Feb 2008 at 7:26 pm

    For those who are suffering from Morgellons Disease who would like support from those recovering in a supportive atmoshere, without all the internet hype please click here:
    http://morgellons-sanctum.org/forum/ .
    (LC)

  13. ajon 16 Mar 2008 at 12:37 am

    seeing is believing
    http://www.liveleak.com/view?i=ea4_1200591484

    you skepticism is blocking your basic powers of common sense observation

  14. Danseron 28 Oct 2008 at 1:47 pm

    I have been working with Morgellons victims for over 3 years and I can assure you that this is real. These victims are genuine people, just like you and me who have suffered horribly, some for many years.

    Many Morgellons victims have told me that the only thing that really works for them is nutrasilver. They say that in 3 weeks their lesions are gone and in 2 weeks their cognitive issues like brain-fog, chronic fatigue, depression and irritability are gone too. You may wish to give it a try if you have Morgellons.

  15. Steven Novellaon 28 Oct 2008 at 2:05 pm

    Danser’s comment is little more than an advertisement for snakeoil. The product – nutrasilver – is colloidal silver.
    http://www.quackwatch.org/01QuackeryRelatedTopics/PhonyAds/silverad.html

    Despite assurances on the website that it is non-toxic, this is not a safe substance to take. Take a look at this guy: http://www.theskepticsguide.org/sgublog/?p=88

    This is an example of argyria, a toxic side effect of colloidal silver.

    It is no surprise that the con-artists who are selling this dangerous snake oil are targeting vulnerable patients who are likely suffering from a delusional disorder – this is a double-con. Shame on them.

  16. [...] wrote previously on NeuroLogica blog about Morgellons disease. Both Peter Lipson and Wallace Sampson have also covered this interesting syndrome here on SBM. [...]

  17. The Truth Revealedon 21 Jan 2009 at 10:13 am

    a) My research has shown that one of the culprits of Morgellons disease is Monsanto Corporation Roundup weed killer which has introduced killer funguses into our yards, chemtrail sprayed on cotton, wheat, corn, crops – yes, is also in our food supply. The spores of this killer funguses are on sprayed soil, airborn, and these funguses gravitate to moisture and water – leaking and rusted air handlers, water tanks, pipes in homes from contaminated water tank and contaminated township or county water supply. A lime fungus created by the killer fungus along with algaens and bacteria are making thousands of people sick in Florida, Texas, California and many other states. One way to kill the Mold and fungus in a home is through a process of dry freezing or replacing damaged areas.

    Also notice that in the past 5 years, property insurance companies are no longer insuring for mold and fungus damage……..property insurance companies KNOW!. Refer to the following website for the Monsanto Roundup weed killer causing the harm, they must be held accountable:

    http://www.ipsnews.net/interna.asp?idnews=19754

    b) My research also shows that the fungus spores get into your body by breathing, eating, etc. The fungal spores accumulate especially in your stomach and underneath your skin, and skin. In turn this fungus, as well as bacterias inside your body as borrelia borgdorgferi, and any algaen you have ingested from contaminated water supply, air, creates pheromones inside the affected individuals body and in the environment that attracts a yet unidentified mite, (could be scabies or collembolan mites) which function is to eat the fungus algaens, and bacterias and decompose organic matter. As you can see Morgellons is a compound of multiple problems and is spreading fast among the population. We must ethically and responsibly hold Monsanto accountable for the nightmare they have created.

    c) My research also shows that the cure might already be available, but not yet released to the public in order not to implicate Monsanto in a lawsuit and cause a panic among the human population. Monsanto greatly funds the campaigns of many politicians, in which many have been corrupted and bought to shut up about this life threatening health hazard.

    c) Go to the Phase I research tab on the website below and read in its entirely the Summary report to see how our water supply is contaminated by fungus, algeans and bacteria that have contaminated our environment by the biologically engineered sprays of the Monsanto Corporation

    http://www.morgellons.org/

    d) I believe the microscopic mite, which could be collembola mite, but I have not yet identified decompose biological organisms, and is attracted by the pheromones of the killer fungus and bacteria (specially borrelia borgdorgferi bacteria found in Lyme disease). The hardy killer strain of fungus along with algaen & /bacteria has been found in tab water, contaminated soil, water tanks, air handlers, etc..

    e) Go to the website below of an NPA study linking the collembola mite to morgellons (collembola attracted by pheronomes of fungus/bacteria in people’s body. Go to the this website to read how the NPA has done research on what I mentioned to you above – thousands of people reporting problems to them and the CDC, especially Florida.

    http://www.headlice.org/lindane/new/2005/drhouse.htm

    Per the research I have done, below is just a few of the many ways that are needed to decontaminate an affected individual’s environment:

    a) replacing old water heater (as per the Morgellons Foundation research report)
    b) Installing Florida Water Works ultra violet system that kills all the fungus and bacteria coming into your house from possible County, City, Township contaminated water supply.
    c) Replacing the old leaking and rusted air handler in attics (rusted and leaking where fungus / molds, algaens produce spores that you breath and getting you ill.
    d) Decontaminate your house and lawn to kill the killer funguses and also treat for mites.

    As a Morgellons sufferer myself, I believe morgellons is a seriously critical illness that first debilitates individuals and then kills them. It is time for ethical responsibility and cure the afflicted individuals and their environment…….Property insurance companies and Monsanto must pay and can’t get away from shedding their responsibility……

    It is time for a cure and to hold the culprits accountable and responsible for their actions.

  18. Fifion 21 Jan 2009 at 12:14 pm

    While I am no fan of Monsanto, this just sounds like Florida Water Works is looking to increase their sales by promoting their product (not a generic one) as the solution (while whipping up some fear at the same time to make their product more attractive).

  19. Danseron 17 Mar 2009 at 7:26 am

    There is a highly effective treatment for Morgellons and you can see proof of it here:
    http://brandytwirl.multiply.com/photos/album/1/Morgellons_Pictures_Before_and_After_Treatment

    You can also see a video here: http://www.morgellonshope.com/content/view/690/46/

    If you have Morgellons, it is time to end your suffering.

  20. DPWon 06 Oct 2012 at 5:45 am

    Morgellons is indeed real. Ive been suffering with this condition for 2 years. I am absolutely not delusional. To pass judgment on anyone that has morgellons and deem them to be crazy is absolutely ridiculous. When I started having symptoms, i did a lot of research and it took months until i came across morgellons. So just b/c it’s on the internet doesn’t mean people are reading about it and then deciding they have it. I can understand how people have a hard time believing it is real b/c the symptoms are very strange. If it weren’t for the fact that i live with it, i might be hesitant to believe its a disease. Just b/c the CDC says it’s not real doesn’t make that a fact. By claiming it’s all in our heads just keeps them from having to put money into research. Maybe they don’t consider it a big enough threat or maybe they know exactly what it is, but won’t share it for some reason or another.
    All i do know is that nobody is going to make me feel like I’m out of my mind b/c they are unable to accept the reality of the situation. Put yourself in our shoes and realize this is not fun for us. Its painful on many levels and the last thing we want to hear is that we’re faking it or crazy. Maybe some are, but not all of us. I have a right to know what is going on inside my body. I want the money to be put towards research as it should so we can get to the bottom of this.
    Btw, i went to the morgellons conference in austin this year. The fibers that the skeptics say are all from clothing are wrong. Scientific research was conducted by a professor at oklahoma state university and his findings proved that not all the fibers are of manmade textile. The origin and composition of those fibers were not known. Even with all the advancements in science and technology, those unknown fibers were composed of something that has not been discovered. The professor was as baffled as everyone else, but it’s further proof that morgellons needs proper funding for research. I hope that i can get answers i need sooner than later b/c my symptoms are only getting worse as time goes on.
    I’ll leave on this note, to everyone that doesn’t buy into morgellons, that’s ok. Everyone is entitled to their opinion, but you are not entitled to pass judgement on anyone that claims to have it. You can’t claim to be an expert on this topic if you haven’t walked a day in our shoes. Please be respectful and accepting towards people that you know nothing about. Wouldn’t you want the same for yourself?

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