Morgellons ... Dare We?

[LymeEnigma]

www.morgellons.org/
en.wikipedia.org/wiki/Morgellons
en.wikipedia.org/wiki/Delusional_parasitosis

I'm one of the unfortunate Lymies who has had a good amount of neurological involvement, as well as various (and numerous) dermatological manifestations. Even now, I get crawling skin, the sensation of bugs biting (quick pinches) one spot after another, and the sensation that my toes are on fire. The hair follicles on my legs seem to create white tubular shafts of skin that protrude the first millimeter or so with the hairs, which could easily be mistaken for "fibers." I honestly do not believe this is due to skin parasites, although I know the subject is open for a good deal of debate ... and I can't blame the poor souls who are tormented constantly by such sensations, and the like, as the little I get is downright maddening.

What page are you all on regarding this? Anyone here know someone who feels they suffer from Morgellons? Anyone else feel that the Lyme, itself, is most likely responsible for these symptoms? Any other thoughts?

[cobweb2]

I get most of the usual lyme related sensations-tingling, stabbing, severe bouts of itching, rashes, etc.

I have read a little bit about morgellons-and one time I had strange pimple like things with I swear fibers coming out of them. At my next LLMD appointment I either forgot to show her, or they had disappeared.

But at the time I thought - Ah Hah wonder if this is what they mean?

Anyway, nothing recent has me suspecting Morgellons -for me at least.

[LymeEnigma]

Yeah, I've had that "I wonder if that's what they mean?" moment, too; I've also had inflamed hair follicles that wept and ended up getting minute fibers of my pants stuck to them, and the thought came to me: do most people experience blue fibers because they wear blue jeans? ... and then I have to ask myself: do most people have these little bumps and messed-up hair follicles on their thighs and knees like I have, as well? Perhaps I'm doing something to the follicles when shaving to create this phenomenon?

I have heard of people claiming to have recovered these fibers from places where one normally wouldn't shave, however, and my mind starts spinning to try to figure out what all of the possible causes of their distress might be, should they be different from mine.

It really is a strange subject, one with tons of possibilities attached.

[itsybitsyone]

I have weird follicals

lumps and bumps

You can pop them if you try but they bleed after or inflame

ingrown hairs

Oh, and the fibers I have seen have been nothing but ingrown hairs under the surface.

I had an open sore once and saw little fibers in it...

pulled on them with a tweezer

It was rather painful but it was nothing but ingrown hair.

I was wondering if I should bring up morgellons here, but since I don't believe its any more than seeing thinngs that other people take for granted as normal...

And we just happen to be hypersensitive to notice these things because we have creepy crawlies that are neuro in nature

and dry skin and rashes

And other crap

But I don't know that we have bugs in our skin

[LymeEnigma]

I had been hesitant to bring up Morgellon's as well, considering the reception I got at HW when I suggested it was likely a neurological response to the Lyme. I think it's easy to misinterpret physical sensations, especially when the brain is already getting twisted up by the bugs. I'm so glad you two are on the same page with me on this.

[LymeEnigma]

Here's an interesting article Haku found last night. It covers both sides of the debate pretty thoroughly ... and I have to say that I'm really on the fence on this one now:

www.psychologytoday.com/articles/index.php?term=20070227-000003&page=1

[LymeEnigma]

From Bionity.com
Full article: www.bionity.com/lexikon/e/Morgellons

Morgellons (also called Morgellons disease or Morgellons syndrome) is a name given in 2002 by biologist Mary Leitao to a condition characterized by a range of cutaneous (skin) symptoms including crawling, biting, and stinging sensations; finding fibers on or under the skin; and persistent skin lesions (e.g. rashes or sores).

It is not known at present whether the condition represents a new disease entity, or whether persons who identify themselves as having Morgellons have a common cause for their symptoms, share common risk factors, or are contagious.[1] A majority of health professionals, including most dermatologists, regard Morgellons as a manifestation of other known medical conditions, including delusional parasitosis.[2][3] According to the Mayo Clinic, health professionals are divided in their attitudes about Morgellons: some believe it is a specific condition and expect it to be confirmed by research in the future; some believe it is not a separate condition, rather its symptoms result from other conditions, often psychological; and some don't acknowledge Morgellons disease at all or reserve judgment until more is known about the condition.[4] CDC has begun an epidemiologic investigation of the "Unexplained Dermopathy" (aka "Morgellons").[5]

*snip*

CDC investigation

A Centers for Disease Control and Prevention (CDC) task force first met in June 2006.[18] As of August, the task force consisted of 12 people, including two pathologists, a toxicologist, an ethicist, a mental health expert and specialists in infectious, parasitic, environmental and chronic diseases.[19] In July of 2006, Dan Rutz, MPH, a communications specialist for the CDC, said "We're not ready to concede there's a new disease, but the volume of concern has stepped up because a lot of people are writing or calling their congressmen about it."[20] In May, 2007, KGW-TV Newschannel 8's Laural Porter asked Rutz "Do you have any idea what the fibers are?" Rutz said, "None. We don't know. We haven't studied them in a lab yet. There is nothing to imply there is [an infectious process], but our mind is open to everything, including that remote possibility."

In June 2007, the CDC opened a website on "Unexplained Dermopathy (aka "Morgellons")", stating, "CDC is working with public health and other medical professionals to identify potential sites for the epidemiologic investigation. CDC also is working with task force members to develop a scientific protocol, including an initial screening case definition for the epidemiologic investigation."[1] On July 31, 2007, the CDC issued a formal Request for Quotations for an epidemiologic investigation of Morgellons, with a view to establishing whether it is in fact a distinct condition. The CDC plans to identify a database of potential cases (study cohort) by November 30, 2007.[21]

On November 1, 2007, the CDC updated their website with information about the investigation process, stating that "The primary goals of the investigation are to better describe the clinical and epidemiologic features of this condition and to generate hypotheses about possible risk factors."[5] They state that Kaiser Permanente in Northern California was chosen to assist with investigation, which will begin when the scientific protocols and review board structure have been prepared and approved. A description of the geographic distribution of the illness and estimated rates of illness in the community will be developed. The investigation will involve skin biopsies from affected patients, and characterization of foreign material such as fibers or threads obtained from patients to determine their potential source.[5]

[LymeEnigma]

From Morgellons Watch:

So, it’s fine for Stricker and Savely to sell expensive long term antibiotic treatments to people who think they have Morgellons? Treatments have have NO SCIENTIFIC EVIDENCE of efficacy. Treatments that are based on a theory that Morgellons is related to chronic Lyme, and treatments that are so far out of the mainstream that Savely was forced out of her Texas practice for prescribing them? It’s fine for Wymore’s friends to do things that even he says are not workable in an academic setting? Why? Because they care?

morgellonswatch.com/?s=wymore


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.

morgellonswatch.com/2006/07/10/morgellons-makes-money/

[LymeEnigma]

Clonden Labs: www.clongen.com/morgellons_disease.php

"I have personally listened to detailed descriptions of the symptoms of this disease and something has got to be done. Our laboratory has adopted the task of studying this disease...."

LE note: a PubMed search on Clonden and Morgellon's, as well as one on Clonden and Lyme, came up with NOTHING.

"Based on many discussions we had with Morgellons patients and on literature reviews of Morgellons cases, we are in the process of establising several molecular detection assays for possible causes of Morgellons disease. We will be posting a questionnaire that asks specific questions that we would like answers for from Morgellons patients in order to assist us direct our research. We are open to collaborations with other researchers who are interested in disease cause investigations."

LE note: They're developing a test based on discussions and questionnaires?! How much do you want to bet that Clonden Labs will be one of the "premier" labs of the future, following in the footsteps of Igenex, Bowen, and Fry?

Professional profile on Dr. Ahmed Kilani (Ph.D, president of Clonden Labs, and also appears, at least from what I've read, to have some type of affiliation with Stricker): www.linkedin.com/pub/1/34b/2a0