Tuesday, May 30, 2006

India

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"

Sunday, May 28, 2006

Morgellons Fact Check

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

Friday, May 26, 2006

Neurotic Excoriations and Compulsive Skin Picking

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.

Wednesday, May 24, 2006

Morgellons is not Delusions of Parasitosis

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.

Tuesday, May 23, 2006

Chat with Savely on My San Antonio

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?

Saturday, May 20, 2006

Border Disease!!!!

(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/)

Wednesday, May 17, 2006

Morgellons Theories are varied

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?

Tuesday, May 16, 2006

The problem with DOP

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.

Sunday, May 14, 2006

Follow the Money

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)

Saturday, May 13, 2006

Digg dug it

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?

(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

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.

Wednesday, May 10, 2006

Fiber test from a Lab

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.

Tuesday, May 09, 2006

We all have the same symptoms!

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.

Monday, May 08, 2006

Bridging the chasm

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"

Saturday, May 06, 2006

A nice analysis

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"

Thursday, May 04, 2006

Schwartz, CIA, France, Bottled Water.

Mr Schwartz, a recently defrocked doctor, is one of the supporters of Morgellons sufferers.

http://www.freenewmexican.com/news/36346.html

Schwartz said he talked to a man who said he used to work with the CIA, and the man told the doctor about a government-developed bacteria that got out of control in France. That theory would substantiate claims that Morgellons has come from bottled water from France, Schwartz said. Schwartz said he is not sure what to think of the theory that the disease comes from imported bottled water because some of his patients don’t drink bottled water

One wonders then, why there would not be more Morgellons in Europe?

Schwartz is either a quack, exploiting people's fears for money, or he simply shares and reinforces the delusions of those he "treats". Good job he can no longer pescribe medicine or peddle narcotics.

Wednesday, May 03, 2006

Duval County report

While looking into the CDC's actual interest in Morgellons, I came across this report from the Duval County Health Department:

http://cctvimedia.clearchannel.com/wtev/morg2.doc

The Duval County Health Department Epidemiology Program began to receive phone calls from the public in February 2005 regarding a skin condition called Morgellons Disease recently highlighted in local news reports. DCHD initiated an investigation into the epidemiology of Morgellons Disease in Duval County. Each reported case was documented and investigated, and the feasibility of designing an epidemiologic study was considered.
[...]
The following chart represents all of these inquiries which include telephone calls, emails, and written letters. Calls began in February 2005 and DCHD continues to receive sporadic calls. Although there appears to be a cluster of reports around March 3,2005, this is attributed to the airing of Fox News’ coverage of the illness and is not a true cluster of disease.
[...]
DCHD Epidemiology consulted a pediatric dermatologist within the health department for his professional opinion. It was concluded that this is a psychological condition that has been mentioned in literature for hundreds of years, and further dermatological research is not practical. DCHD then consulted with the Centers for Disease Control and Prevention in Atlanta, GA. The reply was the same in that there was no interest to support research into Morgellons disease

I wonder if this is how Morgellons.org somehow got the idea that there was a "team" assigned to investigate Morgellons. Here's another version of the report, as a FAQ:

http://cctvimedia.clearchannel.com/wtev/morg3.doc

Due to high media interest the following personnel were involve with initial research:
Dr. Zaheer, C. Bailey-GOC II, R. Kay-EIS, and R. Alcantara-RN; to this date continued research personnel include: Dr. Zaheer, S. Jones-GOC II, S. Traynor-EIS and R. Alcantara-RN.


The team investigated, and deduced the normal skin conditions, sprinkled with DOP.

[UPDATE: 5/26/2006] After similar reports in May, the Los Angeles County Department of Health Services released a brief statement:

No credible medical or public health association has verified the existence or diagnosis of "Morgellons Disease." The current description of the disease is vague and covers many conditions. Until there is a credible, national standard for the diagnosis of this condition, there is no basis for making it a reportable disease. Concerned individuals should have careful clinical and laboratory investigation of their serious skin irritations, but at this time there is no reason for individuals to panic over unsubstantiated reports of this disease.

Mogellons.org Disinformation?

http://www.morgellons.org/doctors.html states:

Note: Some county and state health departments are unaware that the CDC has a team assigned to investigate Morgellons Disease.

That's because the CDC does NOT have a team assigned to investigate Morgellons. How can morgellons.org claim this?

They also state:

According to the Centers for Disease Control and Prevention (CDC) , physicians who have patients suspected of having Morgellons disease, should engage the public health system in the following way:The physician should contact the county health department and inform them that they have a patient suspected of having Morgellons disease, etiology unknown. The county health department should then contact the state health department, who will in turn inform the CDC about the patient in question.

Okay - this text appears nowhere else on the Internet except on this morgellons.org page (and now, here). Did they just make it up?

Then on another part of morgellons.org, we have:

http://www.morgellons.org/medical.html

The CDC has no program to test Morgellons…They're being a little disingenuous

Sounds like a contradiction to me.

What's the real deal with the CDC and Morgellons? Here's what is sopposed to be their form letter:

CDC has been aware of patients' concerns about a skin condition knows as Morgellons Disease for some time; to date no parasites or other agent have been identified as the source of disease.Specimens received directly from patients are typically not appropriate for diagnostic purposes. CDC laboratories are available to examine clinical specimens received from physicians or health departments to try to clarify the cause of disease. CDC encourages people who think they have Morgellons disease to work with their physicians to seek appropriate diagnostic testing.Thanks,Public Inquiry

Sounds about right. Note that they are aware of "patients' concerns", not the disease itself. Maybe I should email them and see what they say.

(UPDATE May 24, 2006: I've heard the news reports of the CDC "task force", but I'll refrain from comment on that until I hear exactly what the CDC says on the topic).

Do you want to have Morgellons?

Okay, so you are ill. You have bad skin, you feel tired, you can't think very well, you itch, you find fibers on your skin, and doctors don't take you seriously.

There are a number of diagnoses that might cover many of your symptoms. But let's assume for now you have a novel infectious disease which we shall call "Morgellons".

Now, how do we know this is a disease?

Let's consider another diagnosis - one that many people feel is related - "Chronic Lyme". Many people seek out a diagnosis of Chronic Lyme, thinking this diagnosis with allow them to deal with their problems. People even report great happiness when they are finally, after much effort, are diagnosed with Chronic Lyme. Believers congratulate one another. Typical quotes from the previous link:
  • "I feel vindicated"
  • "It's a milestone to be diagnosed with Lyme disease"
  • "Congratulations"
  • "congratulations on getting a diagnosis ! what great good news ..bad news "
  • "Getting the Lyme dx, I was elated, happy to finally know what I had.."
These people are HAPPY that they have Lyme. Finally they can put a finger on the cause of their fatigue. What's the problem here? There is no Chronic Lyme - people who have had Lyme do not get sicker than people who have not.

Sure, these people are sick - but lots of people get sick, lots of people have chronic symptoms of eczema and fatigue for no known reason. The difference here is that some people are so desperate for a diagnosis, that they either diagnose themselves, or they seek out a doctor who will give them the diagnosis they seek.

The people who choose Chronic Lyme to explain their symptoms are fortunate in that they choose a real disease, that might actually occur in chronic form. It's also fairly new, so the literature is still in flux. The fact that the CDC and AMA dismiss Chronic Lyme does not dissuade them, they choose Chronic Lyme, they seek out a friendly doctor, and they start happily "treating" their disease.

People who choose Morgellons are less fortunate. Morgellons is not based on a real disease, so they have to claim it's an unidentified infectious agent. They still want the joy of validation, they seek a diagnosis. Unfortunately there are no friendly doctors. They are reduced to diagnosing themselves, and forming support groups to diagnose each other, and pescribing each other treatments, to validate and reinforce their own belief.

Statistics show that Chronic Lyme does not exist, at least not in the majority of the group that claims to have it. They are simply unhealthy, as many people are, particularly in America.

Similarly, Morgellons is just a collection of chronic symptoms that are typical of a percentage of the demographic that reports those symptoms. You are not the carrier of some novel infectious agent, you are simply getting old. Seeking a diagnosis of some exotic disease is a very seductive idea. Unfortunately, in all likelihood, you are simply getting a bit older, and are in poor health - in part due to stress, bad diet and lack of exercise.

The seductive diversion of "Morgellons" is an illusion. It is wasting your time, and the "treatments" are probably making you sicker.

Try listening to your doctor.