September 2007

Morgellons in England

There have been a couple of Morgellons articles in British publications recently, one in New Scientist (subscription required):

http://www.newscientist.com/channel/health/mg19526210.700-morgellons-disease-the-itch-that-wont-be-scratched.html

And another in the Daily Mail/London Evening Standard, from their “This is London” web site:

http://www.thisislondon.co.uk/news/article-23412621-details/M/article.do

The latter article illustrates many problems endemic in the “Morgellons” media phenomenon – a mixture of superficial reporting, and blatant contradictions.

Firstly, they start out on the wrong foot by describing Morgellons as:

The symptoms sound like something from The X Files – sufferers complain of a crawling sensation all over the body, egg-like lumps under the skin and, even more bizarrely, cuts which produce tiny red and blue fibres.

“egg-like lumps” suggests egg sized lumps, which is not a symptom, and nobody would describe their sores as “cuts”, so already the reader has totally the wrong idea as to what we are discussing.

Then we get this photo of the hand of someone who claims to have Morgellons. This is an interesting link to the quackery surrounding Morgellons. Now I’m not sure who they got this photo from, but I first saw it over a year ago when Russell Altman emailed it to me (this is the original photo, the one of the article is cropped and enhanced slightly). It was taken March 21, 2006 and is the hand of “Connie“, someone that Russell claims he cured with the quack remedy “NutraSilver“, which he also conveniently sells. There is a lot of selling of remedies for Morgellons.

Then we get the patient, Beverly Warren, 63, from Manchester, who says “It feels like tiny insects crawling of biting under my skin“, and later “I scratch and scratch, bit it doesn’t help“, and the article then notes “Beverley’s arms are covered with dozen of sores“.

Just like Beverly, many people who have Morgellons have no problem describing how the scratch for hours, or even how they spend hours picking at their skin. Yet somehow, as in this article, the connection is not made that the scratching and the picking as actually causing the sores and the lesions. It’s called Neurotic Excoriations, and looks like the photo on the right:

And the sensation of insects under the skin is also well known. It’s called formication, and it’s caused by many physical conditions, including Menopause, diabetes, or reactions to prescription drugs. Formication can lead to scratching, which can damage the skin, leading to more itching and formication, which creates a vicious itch-scratch-itch cycle that can be impossible to break.

It’s quite possible that 11 years ago, Beverly, then aged 52, was going through menopause, and was suffering from formication(as 20% of menopausal women do, to some degree), she scratched, and this precipitated her current condition. But again, it could be any number of things.

Moving on, we have Rita, 47, whose symptoms started at age 43, and who illustrates the nonsense behind the claim that “According to Morgellons sufferers doctors are dismissive of their illness“:

“The doctors are very dismissive. One doctor sent the fibres off to a lab, but all she said was that nothing abnormal had been detected.” Among Morgellons sufferers, this is a common experience.

Here’s the contradiction: the doctors are “very dismissive” and yet they “sent the fibers off to a lab“. How is this dismissive? They analyzed the fibers, and found they were nothing abnormal. That sounds like they took her claims very seriously. Beverly, also, speaks of many “doctors and dermatologists”, and “two skin biopsies” – again this does not sound like she has been dismissed, in fact it seems like doctors have gone to some length to find out what is wrong with her.

The article wraps it up with some words from “a handful of experts“, without noting that they are actually not experts in dermatology, nor in fiber analysis, or epidemiology, or anything that might help them discern what is actually going on.

The real experts, dermatologists and psychologists, are not dismissive. In fact they take this problem very seriously, and have a great deal of sympathy for those who are suffering from these symptoms. Saying a condition has a psychological component is not dismissing it, it’s correctly identifying it, so it can be properly treated.

September 18, 2007 by Mick West Science

The MRF’s New Theory

[EDIT: The following lists changes made to the MRF Web site on 9/11/2007, deleting several of the additions of 9/10. Shortly after writing this, the MRF web site reverted back to a version from a week ago, with all the new material on filarial worms removed The full 9/10 text of these pages can be found here: http://morgellonswatch.com/about-2/mrf-filaria/ ]

Onchocerca cervicalis (Horse worm) It seems like someone at the MRF was a little over-eager to share their new theory with the world. Yesterday the MRF web site was suddenly changed from cautious suggestion that Morgellons is related to Lyme disease, to wide ranging speculation of animal worms and rare bacterial infections. These new theories are rather out of keeping with the prior tone of the MRF, and this make me wonder if a new hand is at the helm.

But then today, many of these statements were removed as quickly as they were added. Did cooler head prevail? Is there some internal debate at the MRF? Why are the thought processes of an organization being reflected on their web pages in this manner? Can the media continue to give the MRF any credence in light of these unorthodox claims?

The changes to the MRF are happening so fast that you probably never noticed them. Here are some of the more interesting changes between 9/10/2007 and 9/11/2007:

On the “Case Definition”, deletions in red:

This phenomenon is distinctly similar to the mass movement of microfilaria produced by intravascular adult Filaria typically between 1 and 4 AM.
…
5. Musculoskeletal effect is manifest in several ways. Pain distribution is broad, and can include joint(s), muscles, tendons and connective tissue. Both vascular and “pressure” headaches, and vertebral pain are extremely common, the latter usually with premature signs of degeneration (e.g., age 20) of both discs and vertebrae. All are characteristics of disseminated Actinomyces species
…
4. Acute changes in skin texture and pigment. The skin is variously thickened and thinned, with irregular texture and hyperpigmentation pattern. Hyper-growth phenomena are common (nevi, skin tags, microangioma, lipomas, callus formation and Morphea). A common characteristic of infection with Onchocerca cervicalis (A filarial species).

5. Arthralgias. Frequently reported, WITHOUT ARTHRITIS. Common joints are fingers, shoulders, knees and lower vertebrae. Common in chronic Dracunculus insignis infection. (A filarial species)

On the welcome page, this was removed:

Curiously, NO serious search for parasites exists in the published medical literature

also removed, regarding the CDC:

but without a plan to explore and define the true illness they are intending to address. Although it is highly unlikely the CDC will have moved beyond the initial RFP process when peer-reviewed papers reveal the nature, etiology and solution of this illness, we are pleased they are willing to explore it. There will always be a large amount of verification and clarification work to be done as well as medication optimization.

Then the FAQ:

The actual unnamed disease represented by the Morgellons label is vastly different from DOP. A recent systematic study of similar patients has unequivocally verified infection in most with more than one species of zoonotic Filaria and all with unexpected overgrowth of a common commensal bacterium, Actinomycosis israelii. Both are treatable. The second large illness component found in these patients is indeed an episodic delusional state and a verifiable high prevalence of bipolar disease. Review of available NLM data corroborates only that the presence of delusion has been assumed the genesis of imagined infestation with parasites without ever having considered or tested for parasites. Use of even a Mattel microscope would have revealed the Actinomycosis spread, and a simple CBC and CBC will show the elevated monocytosis, abnormal red cell indices, frequently elevated calcium and low potassium.Available, but more specific tests readily reveal elevated inflammatory markers, elevated cytokines confronting chronic infection, and a chronic immune deficiency state resulting in activation of most herpes viruses, many zoonoses, and of course parasites of a still unknown number and species. Physical effects are to skin, brain, peripheral nerves, cardiac conduction, autonomic nervous system function, and hormonal effect. Debilitating subjective symptoms include local or general chronic pain, chronic malaise, and unusual but nonetheless well-documented dermal inter-plane movement of Onchocerca volvulus.
…
The typical skin lesions vary but fall into at least two distinct types. One consists of near-circular (about one cm) bluish colored scars that persist for decades but begin as one mm raised lesions followed by weeping ulcers. The second are eczematous-like. All occur most frequently on distal limbs or the back or face. The Filaria species commonly identified clearly create the second type lesion. The first, when lesions are in clusters, may be Actinomycosis or when not clustered, Filaria. Actinomycosis lesions may itch, but Filaria dermatoses itch with incredible ferocity.
…
Some physicians are attempting to treat patients with this illness, although they do not understand its cause. The disease we are addressing exists incorrectly labeled in medical texts as Delusions of Parasitosis. Because of this, cookbook clinicians will necessarily assume you are psychotic or delusional and look no further. In truth, prescription of psychopharmacological agents will help many patients with emotional discomfort…a real part of the illness. However, these drugs DO NOT address the actual parasite infestation readily treated with anti-helmenthics. Psychiatric drugs, again, do not address other components of the disease, but all may eventually respond to drugs that target the Chlamydophila species. THE LATTER REMAINS TO BE PROVEN.
…
As adequate funding becomes available, we are required by law to regularly post the progress and findings on the Foundation website so as each of us contributes, we can see the result.

These almost sound like the theories of George Schwartz, or perhaps Neelam Uppal. But my best bet is still William Harvey, although I think it’s odd that there is no mention of borrelia burgdorferi (Lyme). Harvey has previous given credence to a wide range of opportunistic parasitic infections based on borrelia burgdorferi infection reducing immunity.

Having looked at the deletions, lets look at something that is still there:

Is it contagious?

Science must answer that question to be certain. However, most data obtained to date strongly suggest this possibility. Its’ mechanism does not appear simple or straightforward. Suggestive data include its appearance in many family members, the finding of parasites, activation of infectious herpes viruses, and low-level identification of antibodies to various zoonotic bacterial antibodies. Many infectious agents can, of course, be transferred by intermediate vectors such as flies. But lack of these expected vectors in many regions of prevalence suggest silent inter-human transfer. The most recent strong hypothesis suggests that an inter-human infectious agent, easily spread by droplet transmission is initially responsible for creating a chronic immune deficiency state. Only such a state might account for the extreme number and types of activated agents that have become measurable and chronic. Its movement is likely silent because of the time for second-agent expression. If highly similar other chronic illnesses turn out to be generated by this initiating agent, the numbers infected are already enormous, so attempts at avoidance near useless now.

That’s rather a ramble, but I think that’s Harvey saying that it’s airborne transmission of borrelia burgdorferi , which causes a chronic immune deficiency state, which allows all these exotic parasites (the “second agents”) to infect you. He also suggests that Chronic Fatigue Syndrome and a lot of other illness are also caused by this, and hundreds of millions of people are infected. This tallies with his paper: ‘Lyme disease’: ancient engine of an unrecognized borreliosis pandemic? , published by Medical Hypothesis, not peer reviewed.

September 11, 2007 by Mick West MRF

The Changing Morgellons Research Foundation

The Morgellons Research Foundation seems to be undergoing a slow meltdown. After the split with the New Morgellons Order last year they have been relatively quiet. Recently though, they stopped asking people to register at the Oklahoma State University, and instead started heavily soliciting donations directly to the MRF.

Then, in conjunction with releasing their latest newsletter, the MRF updated their main page with some rather unusual language:

The Morgellons Research Foundation (MRF) is a 501(c) 3 non-profit organization dedicated to raising awareness and research funding for a seriously misconceptualized illness that we have provisionally labeled “Morgellons disease“. The name Morgellons disease was borrowed as a temporary label by the biologist mother of a two-year-old boy who became chronically ill in 2001, one component of which was visible ‘fibers” protruding from facial skin. The eventual placeholder name came from (1) isolated attention to the skin lesions and (2) after realizing the boy’s illness did not fit the label Delusions of Parasitosis given him by medical clinicians. In a search for others like her son, the biologist created a website for intercommunication. By 2002, she had been contacted by patients from all 50 states as well as globally reporting similar symptoms. The sheer magnitude and rapidity of response compelled creation of the MRF.

That’s very odd. It has never been suggested, by Leitao or anyone else, that her son had been diagnosed with DOP. Nobody is going to diagnose a two-year-old boy with delusions. The rather odd phrasing here suggests this was not written by Mary Leitao.

The page was updated after a few hours to read (as of 9/10/2007, 4:30PST, changes highlighted):

The eventual placeholder name came from (1) isolated attention to the skin lesions and (2) after realizing the boy’s illness did not fit the label Atopic Dermatitis given him by medical clinicians. In a search for others like her son, the biologist found that a third had been formally diagnosed with Delusions of Parasitosis. By 2002, after creating a website, she was contacted by patients from all 50 states as well as fifteen other nations reporting similar symptoms. The sheer magnitude and rapidity of response compelled creation of the MRF.

Seems like someone realized their mistake.

The page continues:

Following a recent clinical database study of patients, the cause and treatment of Morgellons disease are now becoming known, as is the probable mode of transmission. We now know the disease affects people of all age groups, including children. Numerous family members are usually affected simultaneously, and epidemiology review suggests the disease appears to be spreading rapidly since 1980. (The number of families currently registered with the MRF, although large, is thought to represent a fraction of the true number affected.) The disease as we now know it to be, IS currently recognized by the medical community. It was erroneously labeled Delusions of Parasitosis, a name now poised to join the egregious dinosaurs of medical nosology (naming). Because of this misconceptualization combined with practitioner indolence, all patient symptoms had been assumed to be emotionally generated, with little attention to the skin or other organ systems. Curiously, NO serious search for parasites exists in the published medical literature.

Again rather odd. DOP has been recognized as a condition for over a hundred years. There is no doubt that it exists. The above seems to be suggesting that all cases diagnosed as DOP are actually “Morgellons”. this will come as news to Randy Wymore, director of the OSU Center for the Investigation ofMorgellons Disease, who says:

Delusions of parasites (DOP) is a diagnosable condition […] Of the many thousands who have self-reported at the OSU web-based registration site we do not know whether 1% actually suffer from DOP or 90%.

Perhaps this disagreement is responsible for the widening split between the MRF and OSU.

Finally, regarding the CDC investigation, the MRF now says:

Recently the CDC has taken a public stance regarding the still-undefined “Morgellons disease”. Fairly certain this position was engendered by political and patient pressure, we are nevertheless glad they are willing to review information on mostly self-diagnosed chronically ill patients, as we feel certain this will bring to light the full spectrum of illnesses represented by the Morgellons class of chronically ill persons.

This baffles me. They seem to be admitting that the CDC is performing an investigation without any evidence to support that investigation, and that Morgellons is actually a wide variety of illnesses.

So who is writing this? Not Leitao, Savely or Stricker, they are much more reasonable and level headed. Not pez1103, the MRF’s advocacy coordinator, she does not use language like “egregious dinosaurs of medical nosology”

I suspect that this rather chaotic and discordant editing might be William T. Harvey’s work. He’s the chairman of the board of the MRF. I suspect that he’s going to announce that he’s discovered that Morgellons is a multiple set of illnesses and opportunistic parasitic infections caused by an altered immune system compromised by infection by Borrelia burgdorferi (Lyme disease). [EDIT: Wrong, they are claiming it’s worms]

September 10, 2007 by Mick West MRF Quackery

Antibiotics

Suppose you have 10,000 people who have self-diagnosed themselves with a mysterious disease that causes horrible itching, and makes you think fibers are emerging from your body. In many cases they have been diagnosed as delusional, and have been unable to work with their doctors in finding effective treatments. These people have very frustrated, and angry at the medical system.

Suppose then an organization comes along, and tells them that they are absolutely not delusional, and they actually have a “newly emerging infectious disease“, and if they are “given appropriate antibiotics long enough” it will “resolve most symptoms“. and that “the treatment presently most successful is antibiotics.”

Two members of this organization even run a clinic to sell these antibiotics for “long enough“, but their services are very expensive, and these two people are just about the only people in the country who sell this treatment, so most of the sick people either can’t afford it, or can’t travel to see them, so these two only sell their treatment to perhaps 200 people out of the 10,000 who self-diagnose.

So what are the other 9,800 going to do? Many of these people were diagnosed as delusional (in addition to whatever other physical symptoms they have), they then self-diagnosed as having “Morgellons”, after reading about it on the internet. They then read on the internet that “Morgellons” can be effectively treated with antibiotics.

So it’s quite obvious what self-diagnosing people are going to do. They are going to self-treat. They are going to buy antibiotics, and they are going to take them. They are most likely going to harm their health in the process.

Sure, antibiotics are prescription only, and with good reason. But creative minds can find them on the internet, or other places. Take this recent thread titled “how do u get antibiotics for so long“. Some of the answers were:

Find a MD to prescribe tetracycline for “ROSEA” then you can get on it long term.
Most women have it. The MD would not prescribe ATB’s for me for LYME or Morgellons,
but said, OK, you have Rosea and I can do it for that.

Also, from mexico, I order Flagyl (NAME BRAND) which fights protozoa and used in ob/gyn settings for chlymadia. Tetracycline and Flagyl [Metronidazole] work together and compliment each other.
——————————————-
medsmex.com
——————————————-
Here are a couple of more sites for antibiotics without a script:
http://www.aclepsa.com/
http://www.drugdelivery.ca/
I have ordered from both places, you should just do a search for the type of antibiotic you are looking for, there are a bunch I found on Google.
——————————————-
I talked my old doctor into prescribing doxycycline for two years based upon Dr. Garth Nicholsons treatment for CFS, I have FMS. I took it for 1 year 9 months. If helped a lot but hard on stomach. All my symptoms are back.
——————————————–

and in another thread:

I haven’t tried [Tetracycline ] but I know I can get it at the Feed Store (morgellons pharmacy)

Note that the “Feed Store”is referred to as the “Morgellons Pharmacy”, because you can buy antibiotics at the feed store that are intended for livestock. This is something that is well known in the chronic Lyme community, and has hence been transferred over to the Morgellons community. Anti-parasite drugs such as ivermectin can also be found at the local feed store, and are also consumed by people who think they have Morgellons. You can buy some antibiotics (like Ampicillin, sold as “Fish Cillin”) at the pet store in the mall. You can even get these antibiotics on Amazon.com, see also: “Fish Cycline” (Tetracycline), “Fish Zole” (Metronidazole) and several other types of “Fish” antibiotics. Read the comments, nobody seems to be buying it for fish (or birds, if you want Sulfamethoxazole)

So what you have here is a lot of sick people who do not know what is wrong with them, who have somehow self-diagnosed themselves with a disease that practically no doctor thinks is real, and then are self treating themselves with a treatment that almost no doctor would recommend. They find ways to buy these drugs, either from Canada or Mexico, or they take antibiotics nominally labeled for fish.

It’s a major public health problem. Self-diagnosis and self-treatment (for months) with antibiotics for these 10,000 people means:

1) Their actual conditions, physical and/or mental, are going untreated
2) They will suffer from side effects from the antibiotics, possibly serious, which will add to their sickness, further complicating correct diagnosis, as they are taking these antibiotics covertly.
3) They increase their risk of developing antibiotic resistant infections, such as MRSA, and contribute to the overall growth of these “superbugs”.

Sadly the Morgellons Research Foundation, the New Morgellons Order, and Oklahoma State University are greatly contributing to this problem by promoting antibiotics as a treatment, before anyone has even discovered a disease.

September 2007

Morgellons in England

The MRF’s New Theory

The Changing Morgellons Research Foundation

Antibiotics

The Evidence Indicates:

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