Virginia R Savely and Raphael B StrickerThere’s a new article on Morgellons by Savely and Stricker – the authors of the original Morgellons paper, and proponents of long-term antibiotics for both late stage Lyme and “Morgellons”

Expert Review of Dermatology
October 2007, Vol. 2, No. 5, Pages 585-591

Morgellons disease: the mystery unfolds
Virginia R Savely and Raphael B Stricker

http://www.future-drugs.com/doi/abs/10.1586/17469872.2.5.585

Abstract:

Morgellons disease is a mysterious skin disorder that was first described over 300 years ago. The disease is characterized by fiber-like strands extruding from the skin in association with dermatologic and neuropsychiatric signs and symptoms. Although Morgellons disease has been confused with delusional parasitosis, the occurrence of the disease in children, the lack of pre-existing psychopathology in most patients and the presence of subcutaneous fibers on skin biopsy indicate that the disease has a somatic origin. The association with Lyme disease and the apparent response to antibiotic therapy supports the concept that Morgellons disease may be triggered by an infectious process. Recent studies suggest that infection with Agrobacterium may play a role in the disease. Further clinical and molecular research is needed to unlock the mystery of Morgellons disease.

The full article was posted to various Morgellons mailing lists, and is available here:

http://nielsmayer.com/morgellons07.pdf

Overall the paper is very disappointing. There is very little (if anything) in the way of new information. It seems very much a re-working of the old paper, with some additions of various things that have already been mentioned in the popular press. There is no new science. No real studies, and nothing in the way of case studies.

Here I’ll focus on the more obvious (and sometime imponderable) flaws.

The disease was first described in French children in 1674 by a British physician, Sir Thomas Browne

No, it was not. A totally different disease with the same name was described. Browne writes about a local disease of children characterized by coughs and convulsions that is capped by “harsh hairs on the back”. There is nothing to suggest any link, and the MRF does not claim one.

In 1682, Dr Michel Ettmuller’s microscopic drawings of objects associated with what was then believed to be a worm infestation of children (Figure 1) appear similar to microscopic views of fibers from present-day sufferers of this disease

No, they don’t. Mites E are scabies mites, B is some kind of insect larvae (mosquito maybe) C and D are just some other mites, or perhaps a fuzzball from clothing. Fibers look like fibers, especially 300 years ago. There is no connection here.

Morgellons disease was rediscovered in 2001 by a Pennsylvania housewife, Mary Leitao

Maybe they should have checked with her first. She’s said all along that this was just a label, and nothing to do with the original “Morgellons”.

Morgellons disease was initially considered to be a form of delusional parasitosis (DP) by most dermatologists [3–11]. However, as the disease has become more widely recognized, significant clinical differences from DP have become apparent (as discussed later) [12,13,102]. The recent discovery of a putative infectious cause of the disease supports a somatic etiology of this bizarre skin condition.

Dermatologists options have not changed, and they are not as simple as suggested here. If there is something wrong with a patient’s skin, then it’s not DP. Delusions might play a part, but people can have skin problems, and also have delusions at the same time.

A network of blue, red, white and black fibers under the skin of these patients as well as blue, black and white fibers protruding from the lesions can be visualized using a 30× hand-held digital microscope [...] The fiber-like material can be observed in skin lesions as either single strands or what appear to be balls of fibrous material that may demonstrate autofluorescence (Figure 4) [1]. Patients frequently describe this material as ‘fibers’, ‘fiber balls’ or ‘fuzz balls’.

Here note they are trotting out the same descriptions that have been going around for years. Red, white, blue and black fibers on and under the skin, and fuzz balls. This is the crux of the matter here. What could these fibers be? After several years nobody has been able to identify any fibers EXCEPT those fibers which were clothing fibers.

Typically, patients have sought help from 10–40 physicians who often make a diagnosis of DP without a thorough examination and interpret the obvious open sores on the patient’s skin as attempts at self-mutilation

Now this might hold some weight if they had a cohort of patients that they could actually demonstrate had some skin problems that 10-40 doctors had simply dismissed. Unfortunately they are unable to do this. If there are over 10,000 patients, then that’s around 200,000 times that doctors had “dismissed” the lesions as self-inflicted. A better word might be “diagnosed”. 200,000 diagnoses, and all 200,000 wrong? Clearly not. In fact, this large number of similar diagnoses seems to suggest that the diagnoses is correct. If you go to 20 doctors, and they all tell you the same thing, then does this make it more or less likely that your self-diagnosis is correct?

We currently follow more than 200 Morgellons patients in our practice in San Francisco.

So they diagnose Morgellons. And treat it.

The male to female ratio is approximately 1:1 according to the Morgellons Research Foundation. The disease affects all age groups including children, but the prevalence in children is unknown at present. There is often a history of traumatic exposure to plants, dirt or soil, such as gardening, landscaping, farming, camping or other outdoor activities. The association with plant exposure has implications for the etiology of the disease (as discussed later).

This is getting silly. Who has not had “a traumatic exposure to plants, dirt of soil” in the last ten years? Scuffed a knee? Grazed a knuckle? Potted a plant? What was the questionnaire question for this? It’s not mentioned on the MRF survey. What is the sample size?

It appears that skin lesions and fibers may not be present in all individuals with this disease, since family members of patients often report similar systemic symptoms without skin lesions

Brilliant, you don’t even need lesions or fibers to have Morgellons. So what, then, is the case definition for? If you just had the symptoms of Menopause, you would qualify for Morgellons. If you were simply getting old, you could quite easily diagnose yourself with it.

Patients have reported symptoms of this disease in their pets [1]. The majority of reports involve dogs, but cats appear to be increasingly affected. Skin lesions fitting the description of Morgellons disease have also been reported in horses, and horse owners have observed fibers associated with skin lesions on their animals by using a lighted 30× hand-held microscope [1].

What are we to make of this? Dogs and cats? Horses? Reported by the patients? This is getting ludicrous.

Skin biopsies of patients typically reveal nonspecific pathology, or an inflammatory process with no observable pathogens [1]. Several biopsies have shown fibrous material projecting from inflamed epidermal tissue. Often the biopsies are reported to contain ‘textile fibers’ located in the dermal region rather than being adherent to the skin. How these fibers arrive at a subcutaneous location remains unexplained.

This is called an “argument from ignorance” – we can’t figure out how those fibers got there, so it much be some freaky bacteria! A more sensible approach would be to first question these reports. How many, and from whom? Then you might consider the thousand ways that fibers MIGHT get under unbroken skin. Start with light neurotic excoriations which healed over. Then perhaps consider fibers inside follicles. Anyway, you do the math.

Recent studies indicate that Morgellons fibers are resistant to chemical solubilization and heating, making analysis difficult by conventional means [...] There is preliminary information that some Morgellons fibers are made of cellulose, but this information has neither been formally evaluated nor confirmed

So which is it? Resistant to heating, or cellulose? There’s also studies that indicate they are wool and cotton. How do you pick which study to choose? Simply the one the fits your facts best. Better be careful and not pick too many.

In a preliminary study, skin biopsies from Morgellons patients revealed evidence of infection with Agrobacterium, which causes crown gall disease in plants [20]

[20] here is “Stricker‌ RB, Savely VR, Zaltsman A, Citovsky V. Contribution of Agrobacterium to Morgellons disease. J. Invest. Med. 55, S123 (2007). • First description of Agrobacterium in Morgellons patients.” What happened here was Stricker sent Citovsky TWO samples from sick patients with open sores on their skin. Citovsky tested them, and also six samples from health patients with nothing wrong with their skin. The sick patients with skin problems were found to test positive for Agrobacterium. The healthy patients did not.

That’s it. Samples of dubious origin with no appropriate control group, in a statistically meaningless amount. At best it suggests that people who have constant open lesions on their skin due to neurotic excoriations tend to have agrobacterium in the tissue around those lesions. Possibly due to dirt under fingernails. If you itch, you will scratch, if scratch for years then it’s not at all unlikely you would scratch some dirt into your skin.

We then get to “differential diagnosis”, where they purport to show that “Morgellons” cannot be Delusional Parasitosis (DP), Drug induced formication, Scabies, tropical dermatoses (Harvey’s theory) or perforating dermatoses. These arguments seem to be neat little tautologies, which I’ll summarize for flavor:

  • Morgellons cannot be DP because the patients were not delusional before they got Morgellons.
  • Morgellons cannot be drug induced formication, because the patients don’t take drugs.
  • Morgellons cannot be tropical dermatoses, because the patient has not been to the tropics.
  • Morgellons cannot be perforating dermatoses because the patients don’t have the genes or the symptoms

The reasoning here is either irrelevant or wrong. Nobody is making any claim that “Morgellons is X”, so demonstrating that “Morgellons” is not filarial worms does not make any real statement about the population of people who have self-diagnosed with Morgellons. Since the most likely explanation for “Morgellons” is that it is a random mixture of physical and mental conditions, varying by individual, that the sufferer’s have self-diagnosed as Morgellons, then you will ALWAYS be able to find many in that group about whom you can say “they do not have X, so Morgellons is not X”. Contrariwise, you can always find some who actually DO have X, but this also does not mean that “Morgellons is X”, it just means X explains the symptoms for that particular patient.

Take “Drug-induced formication”. Some people who think they have Morgellons actually DO have drug-induced formication. It’s not clear how many, but that’s a bit a of straw man, because formication is a symptom of a HUGE range of conditions, including menopause. Of course Savely and Stricker could say “Morgellons is not Menopause, because some of the patients are men”. But that’s just as disingenuous as their other differentials. Some people who have self-diagnosed with Morgellons MUST have menopause-related formication. It’s a statistical certainty. And given that there are around a million regular meth users in the US, it’s almost certain that some of them have drug-induced formication. If you take into account the users of Ritalin, Adderall and Lunesta (all of which have formication as a side effect), then the proportion is much higher.

Then saying that Morgellons is not onchocerciasis because “tropical travel and eosinophilia are not commonly reported in Morgellons patients” is almost funny. Funny because it’s quite true. Funny because it’s the theory that the MRF are about to promote. And funny because it’s the kind of reasoning that Stricker derided the CDC and the IDSA for when they say it’s unlikely that you have Lyme disease if you don’t live in a region where it is endemic, or if your tests come back negative.

It is unfortunate that this paper will be taken seriously when it really boils down to “We don’t know what these people have, but we think that large quantities of antibiotics help some, and doctors should be more open minded.” The publication of this paper will only perpetuate the misunderstandings regarding Morgellons and further drive vulnerable patients into the clutches of quacks and charlatans.

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]

279pill_man_lores.jpgSuppose 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:fish-cillin.jpg

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.

Related Links:

http://aquaticpath.umd.edu/news/#anchor14215930

http://www.defenselink.mil/news/newsarticle.aspx?id=43579

http://www.cbc.ca/news/story/2002/07/18/fish_antib020718.html

http://abc.go.com/primetime/accordingtojim/episodes/2007/11.html

How can you tell if someone is a quack?

Here’s someone who recommends Doctor Schwartz:

http://morgellonsgroup.proboards23.com/index.cgi?action=display&board=general&thread=1163652018&page=1

I found a Dr. Schwartz at book on morgellons at http://healingresearch.org/
I bought his book. I’ve been with Morg for about a year and have a low immune system because of kidney transplant.

He will work with you to find a doctor to follow his protocol. But, I couldn’t wait and followed his book (broke the law and took horse dewormer I bought at the feed store and made my own eye drops with sulfa-liquid for cattle water, also at the feed store) Also, using the dermatexrx sprays and daitomacious earth mud packs) My doctor told Dr. Schwartz she would follow it and then later changed her mind. So we need another doctor. This is why I did what I did.

I had hundreds comming out each day. In just a few days I’ve gone from hundreds comming out each day to just a few today maybe 2. After the first “treatment” I was able to sleep without any creepy crawling… My sores are almost healing.

I have had some of the worms come out in my stool and the larval migrans are evacuating my skin.

Of course I’m vacuming like crazy, wash everything immediately after I wear it, mop the floors each day, wipe down the counters and even spray the walls. I bought some Neem oil, plant mite spray and use that on the walls as a mist and even on myself.

This can be beaten. Dr. Schwartz book has accounts of others he has treated who are healed of this parasite. Don’t live with it. It eventually will kill you!!! His consult fee was worth every penny.

Now, there are ways of discerning is someone is a quack. But really a quack is just someone who makes money from dubious medical practices. Someone who takes your money with no evidence that they are doing the right thing, and often much evidence that they are not.

If you search for “Morgellons” on Google, you get three ads under “Sponsored Links”:

Cure for Skin Parasites
got Morgellons Disease? We did
Dr. Uppal agrees
www.be-healthy-forever.com

Scabies? or Skin Parasite
Learn the difference for quick cure
Recommended by doctors – safe
www.cure-skin-parasite.com

Morgellons Disease
Natural Remedies for Morgellons
Information and Recommendations
www.renewalenterprises.com

The first site, “be-healthy-forever”, says that Morgellons is Hookworms, and tries to sell you a book for $120, explaining the “cure”, along with a “propriety blend” of oils, for $350, and a full treatment package for $1500.

The second site, “cure-skin-parasite”, is dermatechrx, which I have discussed before. They say Morgellons is “unidentified”, as if the word “unidentified” somehow clearly defines something. (“Do you have “unidentified”? You need “this”!). They simply sell variants of Bactine, for vastly inflated prices. A few gallons of disinfectents and some antiseptic cream comes to $400.

The third site, “renewalenterprises”, says that Morgellons is Lyme, and recommends “the use of supplements that treat viruses, bacteria, parasites, and fungus”, just to cover all the bases. Of course, it also says “These products are not intended to diagnose, treat, cure, or prevent any disease.” They give a long list of “treatments” that are “ESSENTIAL”. The full course is about $500 for about a month’s supply.

And the sad thing is: people will buy this stuff, and in all probabilty they will simply damage their weakened skin even more, continuing the cycle of itching, scratching and lesions.

Of couse, such snake oil is nothing new. It’s not going to go away either. The FDA is not doing a good job here.

Morgellons also makes money for the more serious practicioners of medicine. It was reported on Lymebusters that Nurse Practicioner Ginger Savely charges $500 for a session. Upon seeing a patient with persistent unexplained pruritus and/or neurotic excoriations, she can refer them to a dermatologist who is qualified to make a specific diagnosis, or she can diagnose them with the catch-all “Morgellons”, and begin a course of unconventional treatments that takes several months, at $500 per session, followed by very expensive “phone visits” . For the latter, she was effectivley expelled from Texas by the Texas Medical Board.

This thread on Lymebusters suggests even higher prices:(registration required):

http://lymebusters.proboards39.com/index.cgi?action=display&board=rash&thread=1148324262&page=1

London2146:
Curious here- Is it true her apointments range in the astronomical figures these days?

Patti:
London, I know that sounds (and is) so expensive but all the LLMDs charge these huge figures.

01tr3v (trev)
Her fees are $1000 to see you and she also has some type of structured telephone fee with is rediculous. Its something like 200 for the first 15 minutes, then 175 for the next 15 minutes and so on.

tonie
Yes, the fee to see her is correct. I’d gotten the info emailed to me,

People push Morgellons for a variety of reasons. For some, those reasons might include money.

© 2012 Morgellons Watch Suffusion theme by Sayontan Sinha