May 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”

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 proposed disease, unrecognized by doctors, promoted and 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) Not by conventional medical standards. 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 first proposed 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. The idea of 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) 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) 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

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

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.

eczema_neuroticexcor.jpg

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.

untitled-8.jpg

The above photo is taken from the WKRG Alabama video.

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

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!!!!

I find it amazing that the media swallows the line that cases are centered in Texas, California and Florida.Some of the more fringe “media” outlets on the web are taking this, 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:
txcaflmap.jpg
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.
usa_morg_mapx.jpg

Finally, here’s one from Wikipedia:
usa_states_population_colorx.jpg

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?

Morgellons Theories are varied

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

http://www.usp-db.com/results/theories.asp

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

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

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?

Why don’t 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.