Morgellons Watch Has Moved to MorgellonsWatch.com

New Blog location

2006-06-29T14:56:00.000-07:00

Morgellons Watch is moving to

http://morgellonswatch.com/

This site will remain up, but new comments are disabled.

The Trouble with Cotton Socks

2006-06-29T09:00:00.000-07:00

A few people on Lymebusters have problems with their socks:

belikewater
I threw away my shoes and wore old socks and treated my feet with tea tree oil. This seemed to stop the pain.Yesterday I put on a laundered, fairly new pair of cotton sweat socks. I think I got them recently from the Dollar Tree store. Wow, my foot pain came back and feet started peeling on bottom.Also, when I did my castor oil rubs on my arms last night, I started getting out 'white, cotton looking' fibers instead of my normal black ones. Like the socks had entered my system.

hannah
I was applying a lot of different creams prescribed by the dermatologist and thought that what was happening was that the material from my socks was being caught up with the cream and being drawn into my foot. However, it is definitely being absorbed as a couple of weeks back I wore a pair of black socks with purple heels and toes - that evening when I was getting undressed a purple fiber about an inch long and quite substantial emerged from my heel.

justhanging
Just a suggestion, but drop the socks into boiling water before ever wearing them, then wash with borax and machine dry

Betsy
For a while I wore plastic zip lock bags (cut to fit like a sock)over my socks so as not to keep contaminating my shoes. I also started throwing away my socks each day. I have been spending a bundle on socks. [...] Now, however, a new situation has developed. It is minor compared to the previous foot infestation. Each night when I take off my white socks to throw them away, there are all these pieces of cotton fiber from the socks in webs between the toes and even balled up knots of sock fiber.It is not the sort of thing one goes to the doctor to show and tell,but each night it strikes me as very odd. First of all, the fiber is not on the top or bottom of the foot where the sock torches the foot but rather it is in between the toes. Maybe a single piece of fiber could go between toes occasionally. But every night to find a network of sock fiber BETWEEN the toes suggests some unaccounted for activity happening on my feet at the toe area.I do not wash these new cotton socks before wearing. I have never washed new socks before the first wearing. I have never had fibers stuck in webs and balls BETWEEN each of the toes. [...] Yes, I have worried that the fibers are being drawn into the foot by these microscopic critters. They are definitely pulling fibers out of the new socks and practicing their knitting between my toes.

browncircles
Our shoes and socks were very infected with the white and black balls and fibers. We got news shoes and Gold Toe socks that are kinda thin with lots of nylon. I spray my feet, shoes, and socks with Woodward's Diabetic Basics Instant Foot Sanitizer with benzalkonium chloride. This works pretty well but I still have toenail fungus.

22122
My elderly friend with morgs bought some micatin spray from Dermatechrx and sprays it on her clean socks inside out the night before. It was on sale or she would not be doing this. She has clipped all of the cotton linings out of her underpants carefully leaving the rayon or nylon ones and then after these are laundered, soaks them in rubbing alcohol in ziplock bags.

hannah
Lots of different and inspired approaches as per usual. I've been washing the socks in Borax and changing them a few times in the day but didn't wash them when new. At night after applying Special No 1 ointment, prescribed by dermotologist, I then apply petroleum jelly to create a seal. This has been quite effective in healing some of the lesions so I've tried this during the day too but the tingling persists.

questionhair
First of all - anything that comes into my house - if it's fabric it gets sprayed with ammonia. New clothes get washed with a half-cup of ammonia added to the detergent. I don't have carpets or curtains anymore. No fabric furniture. But do use blankets, and have had to get new mattresses (sprayed with ammonia)Every load of laundry I do gets ammonia in the wash cycle, not just new stuff. And, because I do chores around horses, and they are constantly wiping their noses on me, blowing their noses on me, etc., I buy shirts at the thrift shop. I wash those with ammonia and am just fine with that. No problemo - no itching caused by the thrift shop shirts - ammonia fixes stuff for me.

belikewater
The socks i have been buying really have a lot of loose cotton fibers and balls on the inside. Today, I picke the stuff off before I put on a pair. Three hours later, I peeled them off and looked inside. All the loose stuff had re-appeared. Much was sticking to my feet and liked the area between my toes. I am coming to the conclusion that these socks are alive.

cliffmickelson
I was initially infected by new cotton socks right out of the sack that I did not wash first. There is little if any doubt that cotton is one of several of the more ubiquitous vectors for this thing.

I think what we are seeing here is the result of the culture of belief within Lymebusters. Nobody steps forward to suggest to Betsy that it's quite normal for cotton from new socks to collect between the toes. Nobody tells Belikewater that his socks are probably not alive, and everyone has experienced cotton balls and fluff on their feet from new socks. Nobody tells Hannah that, yes, the fiber was probably just caught in your foot cream. Nobody tells cliffmickelson that there actually is rather a lot of doubt that cotton socks are a vector for a novel pathogen.

I think willingness to believe others that some of the above people have, is paired with a willingness to believe themselves. Hence whatever idea pops into their head, they believe without question. Questioning themselves (are my socks really alive?) is tantamount to admitting they might have made some mistakes in other area, and perhaps an indication that they were deluded in some beliefs.

Socks are interesting since most people have two feet. It would be a very simple matter to perform experiments such as wearing a cotton sock on one foot, and a linen sock on the other for a week, and see if there is any difference. You could use this technique to test the various ("different and inspired") sock treatments, such as ammonia, alcohol, bleaching, borax, boiling etc.

But is seems some people don't want to investigate, to find the truth. They just want to believe.

This uncritical desire for belief is ultimately damaging their health.

The Trouble with Thrips

2006-06-27T07:53:00.000-07:00

Thrips are tiny winged insects, around 1mm (1/32th of an inch) long.

This is what they look like, life sized (on a leaf, look closely):

And here is what they look like under a microscope

Here's a photo of some thrips that a Morgellons believer found on her skin:

(Compare the one at the bottom left with the one in the previous picture)

Thrips infest plants. A serious infestation can have hundreds, even thousands, of thrips in a plant. Sometimes thrips swarm, they fly, and can land on your skin and bite, which can be painful. They can apparently even create lesions that they can get inside, a condition described as Thysanoptera dermatitis.

So suppose you had a thrips infestation, perhaps just on a houseplant, or perhaps you live in an agricultural area, or you have an orchard. Thrips are tiny (they can easily get through a normal window screen) and very hard to see when they are in the air. If you are closely inspecting your skin, then when the thrips land on your skin, it will be difficult to see where they came from. If you have a fertile imagination, it might look like they have emerged from your unbroken skin.

Now within the Morgellons community, there are mixed opinions as to the involvements of insects in the disease. The opinions fall thusly:

1) There are no insects involved with Morgellons, and people should stop talking about them.
2) Insects are not part of Morgellons, but it suppresses your immune system enough to allow insects to nest in your skin.
3) Morgellons is an insect infestation, the insects either create the fibers, or use clothing fibers to create cocoons, and that's what we should talk about
4) Insects are part of the Morgellons syndrome, but we should not talk about it, as it will get us labeled as suffering from Delusions of Parasitosis.

In its doctor approved "Case Definition", the Morgellons Research Foundation says:
"The sensations are at times related to the presence of easily seen insects"

On Lymebusters (the online forum that the MRF recommends), the thread entitled "Morgellons, (collembola?)" sums up the every shifting attitudes of some Morgellons believers.

Orion***
It distresses me every time that morgellons is referanced to insects --such as insects crawling out of the body---this tangent can really confuse those who are trying to understand the morgellon syndrom..I have NEVER, in any remote way, made any observance of bugs-flies-etc exiting my body or crawling underneath my skin...

Patti
The insect theory can be harmful to us if not presented in the correct manner. I believe there is an indirect connection, phermonally speaking [...]

Questionhair
Those that have the insects hatching are suffering a very bad aspect of this - they need so much support and especially to be believed and not rejected.

Patti
We never told anyone they couldn't talk about it and I apologize again if it sounded that way. We just didn't want people to place the main emphasis of this disease's symptoms on that aspect of it, since that is where our skeptics are getting their ammunition to dismiss us.

Questionhair
But to disarm skeptics, any mention of insects should include the fungal / various causes aspect. Any skeptic that can't figure out that insects and fungus can be connected is A) not too bright B) has an agenda/sponsor or C) works at UoG

Orion***
I wish to clarify my stance--no doubt that insects can lay eggs and hatch out of the hide-skin-of many animals---

H
My theroey is that the Morg attracts other parrasites. I have personally whatched a fly hatch and fly out of my leg and watched a white furry bug eat its way into my heal,

Orion***
We all have fibers--etc=====or defined as morgellons,some have this manifestation others some other presentation..we can not define it down to say morgellons is caused by this or that---this is what I see--That is what you see--but we all see fibers, right?SOO, I ask, why are the fibers created by so many different things?

Here's how one of the administrators of Lymebusters (who has posted his own photos of Thrips) explains his own pro-insect belief, and the diversity of what people are seeing.

Anthill
[...]every time I would get bit by something in the spot where I got bit there would be a fuzzball most of the time they were the color of the article of clothing in the area that that I found the fuzzball in If I was wearing white socks they would be white or if I had something red or blue the fuzzball would be likewise I cant speak for my comrade cult members but I think that the critters that are responsible gather the fibers around them like a cocoon
[...]
And I am not saying that we all have the same thing but there is a common denominator that we all have --and that is Doctors are giving us all a bogus diagnosis that we are stuck with so we unite under the same banner to fight it

(Note that Anthill is just joking here, when referring to the "cult", he's referring to another recent post)

So what is the problem with Thrips?

The problem is the assumption, almost the dogma, amongst Morgellons believers, that they all have the same "thing". That there is some new pathogen that they all are infected with that causes all of their symptoms. Any new symptom that someone professes to have gets included in the long list of symptoms that are allowed under Morgellons. Anything too outrageous or unique gets explained as a product of a suppressed immune system. Any mental issues get explained as neurological effects of "this disease".

The problem with that is that they obviously don't all have the same thing. They have a wide range of symptoms. The one thing they supposedly have in common, the fibers, vary as much as the symptoms. On the question of insects - some have them, and some don't. Again, some believers explain this as the insects taking advantage of a compromised immune system. But you can explain anything as the result of a compromised immune system.

The trouble with Thrips is that believers unquestioningly accepted that tiny bugs can be hatched in their adult form directly through your skin, if you have Morgellons. If you have Morgellons almost anything can be accepted, no matter how outrageous. The key thing many Morgellons believers want is "to be believed". By being part of a community that wants to be believed, they support each other, and hence they believe each other, easily glossing over all inconsistencies.

Unfortunately, by believing everyone and everything, some of them abdicate reason, and this gets in the way of them receiving appropriate treatment for their very real health issues.

Fibers on CNN

2006-06-23T11:09:00.000-07:00

The recent CNN story on Morgellons (text version) was interesting as it focused on Randy Wymore’s examination of fibers, and actually showed his colleges removing fibers from a patient, and looking at them under a microscope.

In absence of any epidemiological studies, the only thing that makes the claims of Morgellons at all notable are the “fibers” that sufferers claim to have emerging from their skin. Now I’ve written quite a lot about this before, basically showing that fibers are everywhere, and that many of the photos of fibers shown can easily be identified as Kleenex, or clothing fibers.

The whole Morgellons case hinges around these fibers, which was the thing that originally got me interested – I think it’s high time that I get back to examining the fiber evidence, starting with the CNN video.

First of all, we have Dr Wymore in a thrift store, collecting fiber specimens from clothing with some scotch tape. The reporter then asks him if the fibers he found from Morgellons patients resemble clothing fibers. He responds “No, not at all, totally different”.

Here’s what Dr Wymore told me, on May 22, 2006:
“You see, we do indeed find environmental contaminants in samples from Morgellons sufferers. Definitely cotton, likely from bandages and cellulose fibers, probably from tissue. But, we are not interested in the contaminants that are everywhere. We take the time to sort through the known fibers to examine in more detail the ones that look unusual.”

So what he’s saying here is that he ignores that fibers he can identify, and keeps looking until he finds fibers he cannot identify. I asked him if he did not think that in any sufficiently large sample of household fibers (laundry lint, for example), there would not be some fibers that he would be unable to identify – but so far he has declined to answer.

Later we have some footage of the Morgellons group examining patients, plucking fibers off them, and looking at them through a microscope. Dr Rhonda Casey, DO, points at a small blue fiber and says “That is definitely not a hair, the blue thing there”.

The fiber she points at looks exactly like standard tiny lint fiber. Probably blue cotton. She carefully take it off, and makes a slide.

“This is what they saw”, the reporter says, and shows this picture:

There’s a blue fiber in the middle that looks like a cotton fiber. For some reasons there are a bunch of other fibers that were not next to the blue fiber before. The clear ones in the middle look like cotton or paper, the large brown ones look like human hairs (at about 80 microns they are the correct size). The very dark lines look like the edge of a large air bubble.

We then see several other images, one of which is clearly a damaged human hair – you can even see the scales.

So what’s going on here? Randy Wymore is finding fibers that look different (to him) from clothing fibers. Well, notwithstanding that it’s almost inevitable that you will find unidentified fibers wherever you look, what might make ordinary fibers turn into the Morgellons fibers?

Let’s take a simplistic explanation. Say someone suffers from something that has symptoms of neurotic excoriations (they pick at their own skin, consciously or unconsciously). They are going to have many open lesions on their skin (forearms and faces being common areas). Now lesions are wet and sticky, so naturally they will have several tiny fibers stuck in them. Lesions also heal, so the tiny fibers become embedding in the new skin.

A few months later, just like a splinter, the fiber works its way to the surface of the skin. It may emerge at the original lesion site, or it may have migrated a few inches over. Is it surprising that a small blue piece of cotton that has spent many months under the skin, now looks nothing like clothing fibers plucked with scotch tape at the local thrift store?

That’s just a theory – but it’s a nice simple theory that explains things without introducing a mysterious pathogen. Occam’s Razor: “entities should not be multiplied beyond necessity”. Before claiming that because he cannot identify some fibers, then a new disease exists, Professor Wymore must explain how he has fully discounted the multitude of far simple explanations.

I’ll simplify this to two questions:

1) In any large sample of household fibers, will there not always be some that are unidentified?
2) If a clothing fiber were embedded in the skin for a long period of time, and then emerged, would you be able to identify it as a clothing fiber?

CNN Tonight

2006-06-22T08:30:00.000-07:00

This should be interesting. Paula Zahn is doing a story on Morgellons at 5PM Pacific, 8PM Eastern today (Thursday June 22).

Regardless of the tone of the piece, this will cause a huge blip in the number of "reported" cases, as viewers go to morgellons.org, and fill in the form. They list 4131 right now, which jumped up from around 2000 a few months ago with the local TV coverage.

Hopefully CNN will have done considerably more homework than the local news.

Why does the MRF recommend Lymebusters?

2006-06-11T22:16:00.000-07:00

If you were registered with the Morgellons Research Foundation about a month ago, then you would have gotten an email from Mary Leitao, in which was stated:

"Please know that hope truly is on the horizon. Please do not poison your body with pesticides and toxic chemicals while this mystery is unfolding. You must remain as healthy as possible.
[...]
If you would like a place to communicate with others who have this disease, you can go to this message board, which is dedicated to Lyme and Morgellons. http://lymebusters.proboards39.com/index.cgi

Best wishes,

Mary M. Leitao, Executive Director
Douglas Buckner, Ph.D., Associate Director Morgellons Research Foundation"

Why does the the MRF recommend Lymebusters (and ONLY Lymebusters) as the place to discuss Morgellons? I'm really not sure - since a look at Lymebusters does not lend Credibility to the Morgellons case. Here are some representative quotes from the past 48 hours or so:

From Glennb
I also have the stabbing ones, usually the stabbing is in the region of the lower legs and ankles. I can pretty much control this by spraying natural insect repellant on my lower legs everyday. If I forget I get the stabs. Also spraying the carpeting lightly with cedar oil spray helps. These things also float around in the air. I have a big plastic spray bottle that is one quarter water and three quarters Everclear Grain Alcohol that I added grapefruit seed extract to, also added lavender and teatree essential oils. This makes a great spray to clear the floaters out of the air, also like to spray my sheets with it before I get into bed at night.

From Magnolia
[...] I sat down in front of the computer, turned it on and within 20 minutes I was being swarmed by stuff! I looked at the computer screen and saw the "things" that most of us have. The cube that I sat in was very dusty. So I got out the H2O2 and wiped everything down, wiped my face off, and the swarming stopped.

From l46cheetah
If a Dr wants to be in denial that something physical is wrong then he has to do it on his own time and without me in the room. I have fired about 15 Dr.'s for the way they talked to me . I finally got sick of it and started trying things on my own. Then my nurse friend sent me to her Dr friend and he listens and he is at least trying. I have been to 32 Dr.'s in 3 years.

From Flowerchild
You should see a big difference if you zap tonight, as the moon is full, and the parasites are active and easier to kill. Hanna Kroeger recommended going after parasites 5 days before the full moon until at least 5 days after, as that's when parasites come out of hiding in the body to reproduce

From Belikewater
This current lesion, about 1 inch square on my lower right arm I brought on myself, by pouring bleach on a picked area. There was an instantaneous, very scary reaction. The skin peeled back in a flash. My first panicked thought was 'flesh eating disease' and I grabbed my colloidal silver and splashed it on the area. The peeling instantly stopped. Then before my eyes a weird thing happened. Instantly all sorts of black fibers, specks and what appeared to be semi-formed arthropod forms appeared in the wound, spaced a bit apart from eachother

These are not unusual posts. They are quite typical, and they go without comment. There are far worse posts in there, but I limited it to the last 48 hours, and left out the suicidal rambles.

So why is Lymebusters the semi-official discussion board of the Morgellons Research Foundation? It really can't help their image.

Lymebusters, as has been noted several times in comments here, is not a very healthy place. It's a place where people build and reinforce errant belief structures, and a place where vulnerable people can easily be snared.

How can the MRF say "Please do not poison your body with pesticides and toxic chemicals while this mystery is unfolding" and then two paragraphs later direct them to Lymebusters, where people discuss assailing their skin with bleach, Everclear, tweezers and worse.

Medical Student Syndrome

2006-06-09T12:32:00.000-07:00

Medical Student Syndrome is an unusual affliction that affects people in medical training. The student reads about a novel disease, and finds they have some symptoms of this disease, and then imagine they have this disease.

Here's a brief audio account from NPR, entitled: "The Challenge of Knowing Too Much, and Too Little"

http://www.npr.org/templates/story/story.php?storyId=5473416

People with inexplicable skin conditions, or itching, or people who simply worry a lot about their health, might resort to performing research on the Internet. It seems quite reasonable that they might find Morgellons, and since the range of symptoms is very broad, they would recognize some symptoms. They would then decide they have Morgellons.

Not that their problems are imagined, if people are sick, then they are sick, they have real problems, physical and/or mental. They are not sick with "Morgellons" but they might be suffering from a recently discovered form of MSS known as Cyberchondria.

Physical and/or Mental

2006-06-07T22:47:00.000-07:00

One of the problems with discussing Morgellons is that the argument tends to be polarized by the issue of mental illness. Inevitably, the people who believe they have Morgellons ("Morgellons sufferers") will accuse their doctors and other skeptics of explaining away their symptoms with "delusions or parasitosis", or some other mental disorder, and ignoring their physical symptoms.

In reality things are no so black and white. Let me try to clarify my position here, since I feel it's been misinterpreted.

It is very clear that people with Morgellons do not all have the same problem. In fact the cases discussed on boards such as Lymebusters are very varied.

Some Morgellons sufferers might have a single physical condition. Some might have more that one.

Some Morgellons sufferers might have a single mental condition. Some might have more that one.

Some Morgellons sufferers might have physical conditions, but not mental conditions.

Some Morgellons sufferers might have mental conditions, but not physical conditions.

Some Morgellons sufferers might have both physical and mental conditions.

Let me be very clear here, my UNCHANGED position on this topic is:

I do not think that all Morgellons sufferers are mentally ill.

And just to emphasise this a little more, I've changed the word "and" in line 3 of my header to "and/or".

Lesions are real, and there a number of things that can cause them, including many known diseases, mostly physical, some mental.

Fibers are real, and there a number of things that can cause them. But as yet, no known disease causes fibers to emerge from lesions. No credible evidence suggests that fibers are emerging from the skin.

What is the CDC doing about Morgellons?

2006-06-01T21:02:00.000-07:00

It has been reported several times that the CDC is forming a "task force" to investigate Morgellons, but I could find no mention of this on the CDC web site, nor did the news stories go into much detail. So I emailed the CDC to see if they could give me the official line on what they are currently doing. I got the following response (dated Thu, 1 June 2006 ):

"CDC is forming a working group to provide scientific overview for an objective review of issues surrounding what we are referring to as Morgellons Syndrome. This multidisciplinary group will develop a strategy by which we would expect to form a scientifically useful case definition, an important step toward answering other critical questions as to cause and possible treatment. We are basing this work on the evidence of human suffering without prior assumptions as to underlying cause. That important question can only be addressed by objective inquiry. / Dan Rutz Communications Specialist, Centers for Disease Control and Prevention(CDC)"

What does this mean? I'll give you my interpretation.

They are "forming" a working group (meaning it's not formed yet), to "review .. issues" (meaning looking at the available purported evidence, and judge its scientific rigour and its public health impacts.)

They are looking at something they are "referring to as Morgellons Syndrome", (meaning they have not judged it a disease, not even a syndrome, they are just picking a name for something that might turn out to be one of them, but is initially just a phenomenon that the media wants investigated).

The "multidisciplinary" group (meaning it has at least two people, including someone for mental health) will " develop a strategy by which we would expect to form a scientifically useful case definition" (meaning they will figure out if Morgellons has enough initial evidence to qualify as an actual syndrome or not, and if so, narrowly define what set of symptoms should indicate "Morgellons" for the purposes of future investigations).

Which would be "an important step toward answering other critical questions as to cause and possible treatment" (meaning, if it is a real disease, you have to have some statistically meaningful evidence of this before moving forward, unlike the current anecdotal or otherwise poor quality "evidence").

"We are basing this work on the evidence of human suffering without prior assumptions as to underlying cause" - (Meaning, people are suffering, so we should do something about it. Possibly they have a real disease, in which case we should track that down. Perhaps Morgellons Syndrome should be treated as a specific type of delusional disorder. Perhaps there are actually several different things going on here. Possibly patients sometimes have some other disease and Morgellons is an unhealthy distraction, in which case we should demonstrate that Morgellons is a fabrication to remove uncertainty in treatment. Either way, it's just good scientific practice to not make any assumptions).

"That important question can only be addressed by objective inquiry" (Meaning - unclear. Did he mean to write: "those important questions", as referenced earlier? Or is he speaking of the "underlying cause"? Or a more general question? Regardless, I'm in agreement, as all important questions should be addressed by objective inquiry.)

The writer, Dan Rutz, is a man I have great respect for. He's the former chief medical correspondent at CNN. He once wrote:

"I left CNN under the pressure of reporting stories "for competitive reasons" even when I knew the information was highly speculative, sensational, and little else. It was difficult to cave in to a management style that favors the sizzle more then the steak and fails to recognize both the positive value of responsible health journalism or the great harm flowing from the opposite."

I feel Mr Rutz must be seeing much of what he describes in the current local TV coverage of Morgellons. It must be frustrating for him to not be able to at least urge restraint. But that's not exactly his current job. His current job is to tell the media what the CDC is doing. He's doing to very good job of that.

After typing the above, I get a Google alert of this story from sfgate.com: which contains this paragraph which make things clearer:

"Not a day passes when I don't talk to somebody who claims to have this," said CDC spokesman Dan Rutz. "In the absence of any objective review, people have jumped to conclusions and found each other on the Internet and formed their own belief structure. We really need to debunk this if there isn't anything to it or identify if there is indeed a new, unrecognized disease that needs attention."

The article itself is much better than others in the media so far . I think perhaps the tide is finally turning.

India

2006-05-30T08:48:00.000-07:00

Here's a fascinating article from India:

A study of skin disorders in patients with primary psychiatric conditions.

Which neatly goes over a "mixed variety of physical and mental illnesses".

Only 2% were diagnosed with DOP, and less than 5% of the skin disorders were psychogenic.

Now, I don't think this group is at all representative of the people who claim to have Morgellons, since it's a sample of people who have a primary psychiatric condition. But the varied nature of the study group is probably representative of the mixed variety of Morgellons sufferers.

Here's a nice quote:

"The skin occupies a powerful position as an organ of communication and plays an important role in socialization throughout life. The interface between dermatology and psychiatry is complex and of clinical importance"

Morgellons Fact Check

2006-05-28T09:03:00.000-07:00

The following Q&A is aimed at addressing some of the misconceptions regarding Morgellons that have been propagated in various media articles.

(Note: This will be a work in progress - please email me suggestions and corrections at Morgellonswatch@gmail.com)

Q) What is Morgellons Disease?
A) Morgellons is an invented disease, self-diagnosed via the internet. People claiming to have Morgellons have widely differing symptoms, the most common of which is they feel they have been misdiagnosed by their doctors. Supporters claim the most notable feature is fibers emerging from the skin, yet everyone has fibers on their skin.

Q) Is Morgellons a real disease?
A) No. The offered case definition is very long, and very vague. It fits a very large number of existing diseases, and simply suggest co-morbidity of a variety of conditions such as eczema, chronic fatigue and anxiety disorders. The "evidence" for Morgellons is entirely anecdotal.

Q) What is the History of Morgellons?
A) Morgellons was invented in 2002 by Mary Leitao, to explain her 3-year old son's eczema. Leitao looked at her son's skin under a microscope and found fibers on it, and decided she had discovered a new disease characterized by fibers emerging from lesions, and started a foundation. Her son's eczema cleared up naturally. His symptoms did not include those of the more recent claims of Morgellons. The list of symptoms has rapidly expanded as more people registered. Leitao encouraged people to seek out fibers in their lesions. Morgellons was spread over the internet.

Q) Are the most cases in California, Texas and Florida?
A) Yes, because that's where the most people are, those stateS have the highest populations. Morgellons is a self-diagnosed disease. People "register" over the internet by filling out a simple form on Morgellons.org.

Q) Who is Ginger Savely?
A) Ginger Savely is a nurse practitioner who was unable to find a doctor in Texas to supervise her practice, due to her unorthodox and possibly dangerous treatment of Lyme disease patients. She gives similar treatments to self-diagnosed Morgellons suffers. She is a member of the Morgellons Research Foundation, and co-authored an article on it with Leitao. She is active in the Media campaign, and is seeking new patients. She makes a living from selling her unorthodox treatments.

Q) Did Travis Wilson commit suicide because of Morgellons?
A) His mother, Lisa Wilson, initially though this, and this was stated on her TV interviews, but on internet postings she now believes it was not an overdose, and instead was a toxic reaction to his medication. Travis Wilson was a heroin user with a prior self described "two balloons a day drug habit". He was a patient of Savely who oversaw $14,000 of his treatment. He seemed paranoid and delusional, his sad demise is being used to promote Morgellons disease.

Q) Have researchers determined the fibers are not environmental?
A) No. Randy Wymore is the director of Research at Leitao's MRF. He works on a volunteer basis using the facilities of OSU. He has been examining fibers sent (often anonymously) to him. Many fibers he would discard as environmental, but there were a few he could not identify. Not being able to identify a fiber is not the same as proving it is not environmental. Fibers go unidentified all the time in forensic cases. To prove it was not environmental, you would need to prove it was generated inside the body. This has not been done.

Q) Do most doctors dismiss Morgellons Sufferers as having Delusions of Parasitosis?
A) No. There are a wide range of things going on here. Doctors understand that people might mistakenly think fibers found on their skin are connected to their disease, without the patient being delusional. If a patient has lesions or itching, then there are a vast range of possible causes for this, and doctors would attempt to diagnose and treat them. Delusions would be diagnosed if the patient claims to see things that are not there. There are some people who are clearly delusional and who are highly resistant to any hint of a psychiatric diagnosis. These people are likely to latch onto anything they feel explains their symptoms.

Q) Are some of the fibers as thick as spaghetti strands?
A) No. Generally people describe the fibers as being like normal clothing or tissue fibers. The "spaghetti" description is based on one isolated comment by Lisa Wilson: "It looked like a piece of spaghetti was sticking out [of a lesion in his chest] about a quarter to an eighth of an inch long". Wilson does not actually describer the thickness of the fiber. Nowhere else are the fibers described as being thicker than a single thread.

Q) Do people "sweat black tar"?
A) No. Again this is based on one statement, and was then picked up by the media. This time Savely was quoted as saying: "These people will have like beads of sweat but it's black and tarry". She was probably referring to what other people call "black specks" (dried blood, necrotic tissue, or blackheads). The imagery was just to vivid for the press to pass up.

Q) Does Morgellons cause muscle twitching?
A) No. It's not a real disease, but the list of supposed symptoms was extended to include "uncontrollable muscle twitching" after a report (May 2006) that former Oakland A's pitcher Billy Koch has Morgellons. The extensive Morgellons Research Foundation's "Case Definition", written (Feb 14 2006) a few months before the Koch report, does not mention muscle twitching even as a secondary symptom.

Q) Is it odd that some fiber analysis shows some fibers to be made of cellulose, a molecule generally found in plants?
A) No, far from it. Cellulose is what the majority of environmental fibers are made from. Paper, tissues, cotton, q-tips, linen, ramie, rayon, tencel and lyocell are all made from nearly pure cellulose.

Q) Is it true that "Dermatologists claimed the filaments were all delusions, although none had studied them"?
A) No. Dermatologists often look at samples that patients bring in, in order to eliminate the possibility of parasitic infestation such as follicle mites, scabies or lice. Filaments themselves are not delusions, they are physical objects.

Q) Where do the Morgellons sufferers on TV come from, if this is not real?
A) From the internet. The TV report have been orchestrated by Ken Cowles, the MRF director of media relations. He seeks out people in the local area who have registered with the MRF, and sets up interviews, and supplies photographs and video. The people featured are often active in promoting Morgellons on internet message boards. For example, the Alabama WKRG report featured the family of Leigh Ann Cofield, very active on the Lymebusters forum

Neurotic Excoriations and Compulsive Skin Picking

2006-05-26T11:50:00.000-07:00

The more you look at Neurotic Excoriations, the more it seems to match some of the Morgellons sufferers you see on television.

From stopicking.com

Neurotic excoriations refers to the uncontrollable urge to pick and dig at the skin. This urge may be unconscious or may be deliberate in the belief that it corrects some minor abnormality or surface irregularity of the skin. The picking creates more pronounced abnormalities so that a vicious cycle is started. It involves picking, digging or scraping at the skin persistently often until what is described as a “thread” can be pulled from the skin. Many old scars, which can be disfiguring, are visible near areas of active picking. These pickers usually are middle-aged adults and may be depressed, anxious or obsessive-compulsive. Women are more likely to be affected than men.

From EMedicine.com

Patients pick at areas until they can pull material from the skin. This may be referred to as "pulling a thread from the skin."

Closely related to Neurotic Excoriation is Compulsive Skin Picking

From Wikipedia

It has been seen in psychoses of many people the 'creation' of foreign objects to satisfy the need to pick or damage one's own skin. Many psychiatrists have studied this and found the only real cure is to immobilize the offending object (hands, etc.). The most success has been seen with protective casts to make the picking impossible. In these test cases the skin healed almost immediately, with outbreaks not recurring until the casts were removed.

Again, I come back to the "Delusions of Parasitosis". I think it's a major mistake to automatically equate Morgellons with Delusions of Parasitosis. Each case should be looked at individually, and in many cases a diagnosis of Neurotic Excoriation, or Compulsive Skin Picking, is more appropriate.

Fibers are not imagined parasites, they are just fibers found on the skin, and mistakenly though to be part of a disease.

Morgellons is not Delusions of Parasitosis

2006-05-24T18:27:00.000-07:00

I was looking at this KTUV video, and one thing that struck me was the similarity of the lesions on the afflicted people. They were very similar to the ones on WKRG Alabama. What do these people have in common?

Here's a picture of the lesions.

Actually, I fib. The above picture is of lesions from someone suffering from what is termed Neurotic Excoriation, related to Dermiatitis artefacta.

The picture comes from the web site Dermnet, which has a fascinating (and sometimes disturbing) comprehensive photographic overview of what might go wrong with your skin. The eczema collection alone is quite amazing, and that's where we find Neurotic Excoriations.

So, my actual point here is that Morgellons is not Delusions of Parasitosis, at least not always. Based on the what I've seen, I think it often can be one of any number of skin conditions, compounded with simply mistaking environmental fibers as being fibers emerging from the skin. Delusions are not necessary, just a mistake.

Sure, delusions may be present in some people. But I think a lot of people are quite reasonably minded, and simply found a few ordinary fibers, and then were fooled by the web and media reports into thinking that this was a genuine symptom of their problem.

The sad thing is, this hurts them two ways. Firstly, hurried doctors diagnose them as delusional, and secondly they diagnose themselves as having "Morgellons", in both ways depriving them of appropriate medical care.

If you think you have Morgellons, perhaps you should browse though Dermnet first, just to get an idea of the range of possibilities.

Chat with Savely on My San Antonio

2006-05-23T14:14:00.000-07:00

Ginger Savely participated in a "live chat" today.

I'll quote a few bits:

Ginger Savely: There is no one treatment that works for all. I tell my patients
that they are all "lab rats" because this is all experimentation. I give a
combination of antibiotics (sulfa drugs, Biaxin, Cipro, Doxy are some),
antifungals (fluconazole) and antiparasitics (like ebendazole, Stromectol or
Prazequantil).

Lab rats huh, you are experimenting on your patients (see later)?

Question from Michael in Los Angeles, CA: Nurse Savely, it is often mentioned
that the highest number of cases of Morgellons are in Texas, California and
Florida. Is it not the case that these three states simply have the highest
populations of all the 50 states, and that Morgellons is actually evenly spread
over the country?

Ginger Savely: Good question. However, there is a
higher PERCENTAGE of the population of those 3 states that are reported cases.
So it is not just simply the quantity from each state, but also the higher
percentage of the total population from each state.

Not true. According to the USP database, Arizona, Georgia, Missouri, New Mexico, Oklahoma and Vermont all have a much higher percentage than California. Still, the USP sample size is small, so I'd like to see some figures from the MRF. Remember however, it's a self reported survey, not very accurate either way.

Ginger Savely: I no longer have a practice in Texas, unfortunately. The heat
from the Texas Medical Board was too much for me here. So I have transferred my
practice to San Francisco, CA. California is a more liberal, open-minded state!
Patients who want to see me in San Francisco need to send an email to
lymesf@gmail.com asking for a new patient packet. If you have a sympathetic
local doctor you can ask him/her to contact me directly for suggestions

So, kicked out of Texas, and trying to drum up business in SF. These TV spots make for great infomercials eh?

Ginger Savely: I'm not sure but I do know that in general the medical
establishment tends to be very conservative and cautious. There is a big move in
medicine towards what is known as "evidenced based medicine". In other words,
unless there is hard-core science behind something doctors won't touch it

What, "evidence based medicine" is wrong? Hard-core science is bad? If you can't figure out what is wrong with someone, then just dose them with massive amounts of antibiotics, antifungals and anti-parasitic drugs.

Ginger Savely: Yes, Rife machines are sometimes used and in approximately 30
percent of cases it helps.

Rife machines!!? Are you kidding? Better watch out for the FDA

Ginger Savely: It would be unethical to do a double blind placebo controlled
study at this stage, with so many people suffering. We just try each treatment
on each patient until we find something that works for THEM. What works for one,
doesn't seem to work for another. This is puzzling. But right now, it is all
about getting these people better and ending or at least lightening their
extreme suffering.

Ah yes, unethical to do any kind of study. What if placebo were the most effective treatment? Are you perhaps even keeping records? Any statistics at all?

Border Disease!!!!

2006-05-20T16:40:00.000-07:00

(The latest version of this article can be found at:
http://morgellonswatch.wordpress.com/2006/05/20/border-disease/)

I don't like to go about mocking people, but here I'm just going to mock the media and the readers of FreeRepublic.

The former is spouting the old line that cases are centered in Texas, California and Florida.

The latter is taking that, and suggesting it must be a disease bought over the border by illegal immigrants.

Let's look at some infographics. Firstly from Morgellons.org, we have a little map that shows the states with the most cases:

See, it's Texas, Florida and California!

Now, here's a more detailed map from "Unidentified Skin Parasite (a.k.a. "Morgellons Disease") Database". Darker states have more cases.

Finally, here's one from Wikipedia:

Notice the amazingly high degree of correlation between the maps! This proves without a doubt that cases are highest in CA, TX and FL!!

But wait, what's Wikipedia doing supporting this nonsense?

Actually, the Wikipedia map in not a map of Morgellons incidence. It's a map of population.

That's right folk, there are more cases in CA, TX and FL, because MORE PEOPLE LIVE THERE!

The only reason those states have the most cases, is that they have the most people.

You might as well go around saying that the highest incidence of people is found in California, since it is, and it's just as meaningful.

And CBS2 news in Los Angeles gets people all scared, saying that Los Angeles has the highest number of cases of Morgellons in the country. Could this possibly be related to the fact that (excepting New York) Los Angeles has MORE PEOPLE than any other city in the US?

Idiots!

(The latest version of this article can be found at:
http://morgellonswatch.wordpress.com/2006/05/20/border-disease/)

Morgellons Theories are varied

2006-05-17T16:59:00.000-07:00

Many Theories have been proposed for the cause of "Morgellons", many were gathered at:

http://home.comcast.net/~usp-db/results/theories.htm
(Username: results, Password: survey).

Here's a selection of some of the more interesting theories:

I think this could be a tiny fly (midge) that carries a parasite (something like leishmania). The fly loves to live in hair, and the fly larva loves to live in our skin.
CO poisoning, mold, and the Lyme disease?
Took wormwood, used sulfur and had round spot- things "explode" out of my pores that hurt. Biting sensation can be pricly to very sharp. Are these hook worms?
I have leaned towards man-made govt. botches, bioterrorism, or.....get this.....one of the plagues of the end times
I believe that this is a bacterial infection primarily with a secondary parasitic element for the majority of patients
I believe this to be some type of fungus, bacteria or mycoplasma that resides in the dermis layer of skin. It is transparent and it attracts parasites that feed on it or its effects through skin pores.It could well be a new bio engineered strain of something that has escaped or been turned loose upon us
are military bases....something to ponder
I also had a Saltwater Aquarium w/ live rock & live sand. During water changes & moving the live rock, I cut my finger on sharp edge. I believe it is a strong possibility how I was infected.
contact with dying patient who supposedly had Norwegian scabies? Touched his rash- no gloves- immediate crawling
I believe this is an insect that morphs from one stage into another.
I got this from an ac system in a sick building.
I do believe that this blight was bio-engineered
possibly bug lives within body and crawls thru nasal cavity or tear ducts or when introduced to other insects
our government has a patent on Mycoplasma - this needs more research. Stealth Viruses are definitely involved. Government altered nematodes that were originally to be used to damage enemies crops.
I've research black pedra, which is a fungus of the hair/scalp. I believe it's a fungus which can spread from hair falling out.
I also feel that the slow permeation of the environment with radioactive dust and the imbalance created by electromagnetic pollution has given 'bad' fungi and bacteria an edge over 'good', creating more food for these super bugs.
Maybe the sticky liquid is the fungal infection and the lesions are our skin's attempt to fight this infection.
I believe the string/ lint/ hairs / etc. are both 1. Part of the cocoon structures produced to protect "their" young and 2. A way to transmit along blood to "their" young = via an umbilical-cord or veins..... I believe the sand-like granuals are nymphs / still in development....
Maybe this is a way to thin out the population
I use to think that I got this from doing crank way back then.
I am the only coffee drinker in the house. I used to drink tea but changed to coffee 6 years back. same time I noticed itching no other member off my family has symptoms
I think it is a parasite and not a fungus. This parasite can produce toxic substances such as threads and crystals.
This is part of the military and federal health care vaccination programs, people who receive the military vaccine and flu shots are heavy mostly asymptomatic carriers, avoid them for your life and especially EVERY vaccine even the new bird flu.
The fact that just entering the room people begin swatting at their eyes proves no doctor could claim this to be delusional because they are attacked by being within apex 3 ft of me.
One of my dogs has tested positive for Lyme disease
My torment is related to bird mites after removing a sparrow's nest from my garage
I had Morgellons lesions on my legs when sewage backed up into my tub
No such type of parasite exists in medical circles. They bite and create wounds. They are blood seeking parasites
This Morgellons creature has been identified by someone as the same creature that was found within the Frass Meteorite. Perhaps from another planet
I think this problem is a result of genetic engineering of enzymes and/or altering insects so or their larva used to controls pests so as to improve crops
My house, when I got back from out of town, was covered with black fiber balls everywhere, in every room and that's how I caught it. It couldn't of been fungus, and I believe it could've been used by most likely our government, in order to test out a new biological weapon.
I do believe it is possible Morgellons are "new" or possibly manmade, accidentally or otherwise. I find it curious that many Morgellons message boards have been visited by shady characters and/or harassed out of existence.
It seems to me that the most prevalent factors are water damage and dampness
These things make themselves in their own image. They take food, & reproduce themselves in my mouth.
scabies are a possible way of infection as im sure i had scabies first, and then these took over
I am 99.99% sure that my infestation came from a houseplant that I had left outside and brought into my house after several days and watering. I believe numerous types of mites infested the plant.
I think there is something else to all of this, but what "it" is, I just don't know.
The nanoflagellar machine. The idea of using bacterial nanocombinations in computers.
I believe something the biochemists made somehow mutated from what they thought it was and they are trying to correct it by putting things in the air, they didn't know it was affecting people, and now, what they are doing is making us worse.
my theory is that we have been infected much longer, but some recent environmental change (environmental becuase of it's diffuse nature among the population) may have brought on the acute parasitic effects or somehow made a dormant infestation become active.

Still think everyone has the same thing?

The problem with DOP

2006-05-16T09:49:00.000-07:00

DOP is Delusions of Parasitosis (the irrational belief that one is infected with parasites). People who think they have a condition called "Morgellons" sooner or later get an diagnosis of DOP.

This has led to a tendency to equate Morgellons with DOP. I think this tendency is not helping, for a variety of reasons.

Firstly, not all Morgellons sufferers claim to have parasites. Many claim that it's complication of Lyme disease, or other bacterial infection. Some claim a virus, some claim a depressed immune system for a variety of reasons, some quite outlandish (chemtrails, biowarfare, etc.)

The common elements of a "Morgellons" case are fairly simple:

1) Fibers found on the skin that are thought to be associated with their health problems.
2) Some Medically Unexplained Physical Symptoms
3) A belief in misdiagnosis by their physician.

The fibers are generally real objects, although sometimes the patient reports fibers that jump in and out of the skin, and even fly around the room. However most "fibers" are real, and generally resolve to lint, hair or sebum excretions.

Medically Unexplained Physical Symptoms (MUPS) is nothing new to the medical world, and treatment of MUPS has always been a problem. One thing that complicates MUPS is when a patient becomes "difficult", and begins to self-diagnose in an irrational manner. If the MUPS is suggested to have some somatic or psychological component, the the patient is often very resistant to any kind of psychotheraputic treatment, as they tend to vehemently reject any connection between their mental state or lifestyle and their physical ailments.

Which brings us back to DOP - if the tendency is there to equate Morgellons with DOP, then the patient is far more likely to enter into a diagnostic dialog in a highly distrustful and defensive state of mind. Their conviction in their own self-diagnosis will only become stronger as they mentally reject and retreat from the possibility of a somatic component, or any kind of delusion.

Thus, although it is tempting to equate Morgellons with DOP, it is both incorrect and potentially harmful. Diagnosis of DOP should be reserved for specific cases where an irrational belief in parasites is present. Other cases self-diagnosed as Morgellons would better be described as MUPS, as this is a more accurate description, and less polarizing for both patient and physician.

Follow the Money

2006-05-14T09:01:00.000-07:00

People who think they have Morgellons often have a hard time convincing their doctor that they have Morgellons. Despite the reams of information printed out from the internet, and the collections of fibers they bring to the Doctors office, they are invariably diagnosed with something like atopic dermitis, or eczema.

If they continue to insist that fibers are sprouting from their skin, then they may be eventually diagnosed with some kind of delusional disorder.

Because of this, the Morgellons sufferers seek out doctors and other medical professionals who are predisposed to diagnosing Morgellons when a patient believes they have it.

Who are these medical professionals? Why to they offer this diagnosis? Well, it turns out they are very few in number, and they might be doing it for sound business reasons.

The one most active in the news right now is Virginia R. Savely, RN, (aka Ginger Savely). Savely is a Family Nurse Practitioner. She recently moved from Texas to San Francisco, because she could no longer find a doctor in Austin who would supervise her practice. The problem was that she was treating people who had been diagnosed with Chronic Lyme (a debatable disease in itself), with long term antibiotic therapy, something that is not approved by the Texas Medical Board, and is generally regarded to have only placebo effect.

Some quotes for the above article:

Savely said she doesn't blame her upcoming move on her supervising physician. She knows that many traditional doctors consider her a quack, she said.
"In all the practice years of doing this, I haven't seen the (ill) effects" of long-term antibiotics, said Savely, who thinks she developed Lyme after camping in Maryland in 1987 and recovered after a year of antibiotics.
"There's no value in giving prolonged antibiotics," said Dr. Lisa Ellis, who works in an infectious disease practice group in Austin.
Savely was disciplined last year by the state Board of Nurse of Examiners for not following certain protocols and record-keeping requirements in treating a Lyme patient.
A 2003 study of 129 Lyme patients, co-authored by Dr. Mark Klempner at Boston University School of Medicine, concluded that a long course of antibiotics was no more useful in treating cognitive symptoms, such as memory and attention problems, than a placebo.
But Dr. Raphael Stricker, who supervises Savely's San Francisco practice, said the research was flawed because it considered "long-term" treatment to be three months, and the dose for two of those months was too low to be effective.

So, Savely moved to SF to work with Dr. Raphael Stricker. Stricker has an impressive looking resume, and currently works as Medical Director at Union Square Medical Associates (USMA).

USMA pushes six things:

Fertility treatment, specifically a novel treatment of "immunological abortion" with "intravenous immunoglobulin" (an infusion of antibodies from blood donors).
Viagra - If you want it, it costs $400 for an initial consult, then $15 per tablet. They will accept accept your personal check, major credit cards (VISA or MasterCard), and (oddly enough) cash.
Weight Loss - with "magical" medications
AIDS treatment - but only with DNBC (Dinitrochlorobenzene), a novel treatment with limited, yet promising clinical studies.
Lyme disease - which is not very common is California. Stricker recommend extended courses of antibiotics.
Hyperbaric Oxygen Therapy - usually used to treat decompression sickness, now an experimental treatment for many conditions.

What's common about these treatments? The common factor is they are NOT COVERED BY MEDICAL INSURANCE.

Now, I'm sure Dr. Stricker is a fully qualified doctor - but it seems like the USMA is focused on selling Viagra, diet pills, and unconventional, expensive, "therapies" that often require multiple treatments.

In short, the collection of treatments on offer at the USMA seems ideally suited to establishing patients as revenue streams. Since the treatments do not need to be justified to the insurance companies, they can be continued for as long as the patient feels that they need them. As long as the patient can afford it, the USMA is able to give it.

Dr. Stricker is also on the Medical Advisory Board of the Morgellons Research Foundation.

Back to Savely - in Austin she had 400 Lyme patients, to whom she was prescribing long term antibiotic treatments. All these patients make up Savely's livelihood. She also had "over 50" Morgellon's patients, who she gave much the same treatment as her Lyme patients. Savely was making a living by prescribing a treatment not approved by the Texas Medical Board. They ran her out of town, and now she has set up shop with a like-minded Doctor in San Francisco, and continues to publicise Morgellons, which will inevitably lead to more patients coming her way.

There is nothing wrong with earning money - but when dealing with health issues, the patient needs to be aware of potential conflicts of interest that the medical professional treating them might have. Do they want to make you well, or do they want to sell you something?

(TO ADD COMMENTS, CLICK HERE)

Digg dug it

2006-05-13T16:43:00.000-07:00

Digg has a story

digg story

Digg visitors: I'd start with these:

http://morgellonswatch.blogspot.com/2006/04/objects-emerging-from-lesion-on-childs.html

http://morgellonswatch.blogspot.com/2006/04/tea-tree-objects-identified.html

and

http://morgellonswatch.blogspot.com/2006/05/duval-county-report.html

But there's lots more here.

Why don't doctors get Morgellons?

2006-05-13T10:46:00.000-07:00

(The latest version of this article can be found here:
http://morgellonswatch.wordpress.com/2006/05/13/why-dont-doctors-get-morgellons/)

People suffering from Morgellons are constantly going to see doctors. These doctors are generally dismissive of the symptoms of fibers coming out of the skin.

The Morgellons Community claims there are thousands of people with Morgellons. Many also claim that it is a contagious disease.

If so, then why have none of these skeptical doctors ever been infected with Morgellons?

Think about it, if 10,000 people have Morgellons, they have probably been to see a doctor at least 10 times, that's at least 100,000 times a doctor has been in contact with a Morgellons sufferer. (Probably more like 1,000,000).

Why, over all those visits, being in close contact with the patient, has a skeptical doctor never been infected?

This lack of infection proves with a very strong degree of confidence that either Morgellons is not a contagious disease, or that conventional Doctors are somehow immune to it.

(The latest version of this article can be found here:
http://morgellonswatch.wordpress.com/2006/05/13/why-dont-doctors-get-morgellons/)

Cause and Effect

2006-05-13T10:22:00.000-07:00

Recently (April 2006) a member of the Morgellons Community, a young man, died of a drug overdose. He was one of several patients of Ginger Savely, a Texas Nurse Practitioner who offers diagnoses of Morgellons to those who seek it.

This young man was very intelligent and well-spoken. He was also a self-admitted drug abuser, taking a wide range of drugs including heroin. He was very open about this, and discussed his extensive drug use, and his related health problems, at great length on a large number of internet posts.

After he was "diagnosed" in early 2005, he apparently became increasing depressed and paranoid, believing that he was the subject of biological and electronic harassment.

His passing is very sad, but it is made sadder in that the Morgellons Community will memorialize him as a victim of Morgellons. I think that "Morgellons" probably did contribute a little to his fate, but not in the way that Savely and other would suggest.

It is very, very, sad.

Fiber test from a Lab

2006-05-10T22:23:00.000-07:00

From "greta" at LymeBusters:

Scott F. Stoeffler, Senior Research Microscopist of McCrone Associates, Inc. "identified" my fibers. Got the actual bill today $820.00! They told me it would
be $600 charged on the credit card.

I got the written report too, my fibers were identified as follows: black wool fibers, red wool fibers, blue wool fibers, colorless wool fibers, colorless polyester fibers, a blue polyester fiber, colorless cotton fibers, blue cotton fibers, a pink acrylic fiber, and a green acrylic fiber. They were examined by polarized light microscopy. He sent one photomicrograph depicting typical woolen fiber from one of my samples.

And from "Sidney"

The NPA worked with McCrone's - Chicago, back in the 90's, when Dr. Walter McCrone was still living, interested in the fiber-skin issues, and either Dr. McCrone or Dr. John Shane, McCrone's chief researcher at the time, designed a protocol for us to follow. Participants strictly adhered to the protocol. As I recall there may have been twelve of us who submitted "specimens" to McCrone's Research Laboratory.Shower, shampoo, air dry, no towels, no hair dryers, no sitting on upholstered furniture during the process of combing and collecting from our skin.Results same as yours! Various fibers identified by content and color including Flax, Wool, Lycra, Cotten, Polyester, etc.
Thanks for sharing this information and naming the lab involved. Maddening that it was such an expensive process for you. I recall that it was an expensive process, but the amount you were charged is outrageous.

Okay, so a whole bunch of people had their fibers tested, under fairly rigerous conditions, and the results were that the fibers were regular household fibers.

Yet the response is simply to deny the results, and complain about the cost. Why would the labs make up results? Seems like the submitters had already made up their minds about the fibers and were just seeking validation.

Fibers are everywhere. They float in the air and land on you after showering, and they also remain on your skin even after showering.

Here's McCrones:

http://www.mccrone.com/ma/techniques/plm.html

Seems reasonable to me.

We all have the same symptoms!

2006-05-09T09:38:00.000-07:00

Morgellons folk say they all have the same symptoms.

You research the internet and so easily discover that Elliot's disease, National United Skin Parasites Association, the Fiber Disease, and Morgellons are all one and the same. Ironically, all of the people with the exact same symptoms that you have, have been receiving the same faulty diagnosis

What are these symptoms? What does MRF have to say? Well, they have two pages, one on "symptoms, and one that proports to be a case definition. Symptoms:

http://www.morgellons.org/symptoms.html
Most individuals with this disease report disturbing crawling, stinging, and biting sensations, as well as non-healing skin lesions, which are associated with highly unusual structures. These structures can be described as fiber-like or filamentous, and are the most striking feature of this disease. In addition, patients report the presence of seed-like granules and black speck-like material associated with their skin.[...] More significant than skin symptoms, in terms of the diminished quality of life of the individual with this illness, are symptoms unrelated to skin, to include Chronic Fatigue Syndrome (CFS), Fibromyalgia (ME), joint pain, and significant problems with concentration and memory.
Remarkably, not all people with this disease have overt skin lesions, as some individuals report intact skin. The troubling sensations and accompanying physical structures, are the consistent clues to this infectious process

http://www.morgellons.org/casedef.html
[...]The following case definition of Morgellons disease has been developed by physicians on the medical advisory board of the Morgellons Research Foundation[...]

Now, I'm not going to post the entire thing here, as it's quite long. But I'll paraphrase the important parts:

Lesions may or may not be present, they might be a symptom of the disease, or the result of scratching. They might look like pimples, or hives, and may or may not contain pus.
Crawling sensations can occur anywhere on the body. Sometimes insects or parasites are visible.
Fatigue is always present.
There will be behavioral effects that are diagnosed as psychiatric disorders (the implication is that they do not have these disorders, but the symptoms indicate Morgellons).
Fibers are reported in and on lesions and on the skin. Fibers may be any color size or shape. Granuals of any size or shape are found on the lesions and skin. Fuzzballs up to 3mm in size are found on lesions and skin.
Additonal symptoms include: vision changes, neurological changes, gastrointestinal changes, skin changes, Musculoskeletal changes.

Other than the fibers, what we have here is a catch-all of symptoms. Anyone who has some chronic condition cannot fail to have some of these symptoms. NOBODY has them all.

One can become a "Morgellons" sufferer simply by matching a few of your symptoms to the list, and then examining your skin for fibers - which everyone has on their skin.

What about those other conditions mentioned: Elliot's Disease? Well, Elliot's Disease research Library links to this article about "this disease"
http://explorepub.com/articles/omar_10_2.html#top
This gives a simpler definition:

It is characterized by neurological sensation of movement subcutaneously and/or in deeper tissues and cavities that is usually associated with mucoid cutaneous lesions from which one or more species of arthropods as well as unidentified fibers may be recovered.

Unfortunately, although this is a shorter definition, it's actually even less precise than the Morgellons.org definition. We have a "sensation of movement" either on the skin or somewhere on the body, usually with lesions but not always, and either with or without arthropods and with or without fibers. Based on that definition - I've got it, since my scalp itches a bit right now. Yours probably does too.

Moving on, NUSPA has a nice page of symptoms:

http://www.skinparasites.com/id12.html

They focus on a very broad range of symptoms of infestation by a parasite, insomnia and the specks and fibers. Nowheres does it mention fatigue or any neurological complain. This is obviously very different to Morgellons.

Then there is "The Fiber Disease" - this seems to be a term popularized by the biology-online forum thread.
http://www.biology-online.org/biology-forum/about1958.html
Unfortunately, they don't list the symptoms anywhere I could find. But individual posters report a very wide range of symtoms.

Okay, finally my point:

Not everyone has the same thing.

There are so many different symptoms, it's impossible to describe this as "a disease" or even "a syndrome". Everyone has different symptoms, everyone responds differently to treatments. The term "Morgellons" was invented to describe a child's skin problems, which he is now cured of, and which have no relation to the symptoms described by the vast majority of sufferers.

Bridging the chasm

2006-05-08T15:07:00.000-07:00

Karla McLaren was a new-age healer and teacher. An author with several books like "Emotional Genius" and "Becoming an Empath". A self described "full-fledged member of the New Age culture for over thirty years".

Then, a few years ago, she became a skeptic, and she wrote this wonderful article that explains in part why it took so long.

http://www.csicop.org/si/2004-05/new-age.html

In a very similar manner we have two cultures in the area of Morgellons. One of rational skepticism, and one of alternative beliefs. What these two culture have is a failure to communicate. Karla gives a heartfelt request that I'm sure many Morgellons sufferers would agree with:

"I would ask you to respect our humanity, and approach us not as if you are reformers or redeemers. I would ask you to approach us as fellow humans who share your concern and interest in the welfare of others. I would ask you to be as culturally intelligent as you are scientifically intelligent, and to work to understand our culture as clearly as you understand the techniques, ideas, and modalities that have sprung from it. We are a people, not a problem"

A nice analysis

2006-05-06T10:41:00.000-07:00

This article is mostly about Chronic Lyme - yet it describes a more general set of "Medically Unexplained Symdromes" (MUS) and discusses some of the implications of these problems. Well worth a reading in full.

http://www.ehponline.org/members/2002/suppl-4/607-611sigal/sigal-full.html

"
In the final analysis there is a struggle over
who defines a new and emerging disease:
patients, their chosen clinicians and advocacy
groups, or the biomedical establishment’s
physicians and scientists. It is clear that the
scientific community faces a formidable challenge.
Unexplained suffering and fear of the
unknown are far greater than fear of even the
worst, incurable disease and drive these
patients to extreme measures. Dealing with
the phenomenon of chronic Lyme disease, a
new constituent of the MUS syndromes complex,
requires an appreciation of its complex
psychopathogenesis. We need to appreciate
and study the aporology of MUS conditions—
to describe and heal the sense of being lost,
hopeless, and vulnerable"