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gil
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[*] posted on 16-1-2007 at 18:58
Morgellons sindrome


What's you people's opinion about this?
Shall we start a tread about it?
Does anyone look for concrete answher/explanation?

Proof ,picture,personal experiences? Anyone?
I'll say this is another like Helicobacterii pylori.
Or worst. I never put my foot in U.S. but this attitude from who knows (or should know) really boil my blood!!
How can they let people clearly in distress, child,etc
in the limbo (of knowledge)? What for? For the money?
may I ask some U.S. citizen ,Please, can you let me
know statistic about EDUCATION of Morgellons disease/sindrome sufferers? I bet nobody with a Medicine Laurea or similar is suffering or complaining about this FAKE
MYSTERY. IF MY idea is wrong, well, I may be on the road for
a Nobel,maybe.




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[*] posted on 16-1-2007 at 19:13


IF there is any fact associated with Morgellon's syndrome (rather than psychological hysteria), I'd bet on a fungus.

There is a support group for Morgellon's syndrome here:

http://www.morgellons.org/




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[*] posted on 16-1-2007 at 19:44


Or is this another fictitious disease like "the clam" that was being hyped out of Italy on the web a few years ago?

I never heard of it.

Anyway @gil, don't buy your RT ticket to Stockholm quite yet.
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[*] posted on 16-1-2007 at 19:56


Before assuming that this is not a hoax, check the Centers for Disease Control (Atlanta),, the JAMA, the Journal of Morbidity & Mortaility (which is the top epidemiological pub)

And if this unheard of foundation is only one NAMING this supposed syndrome, I wouldn't bother memorizing the name just yet either, because that's not how it works.

Mimics scabies and lice. I'd wait for some real dermatologists to have an opinion. Outside of Appalachia scabies is uncommon in US.
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[*] posted on 16-1-2007 at 20:10


The relevant part of NIH is called the National Institute for Allergic and Infectious Diseases (NIAID) and if they are not on it - it does not exist.

So, are they on it?
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[*] posted on 16-1-2007 at 20:45


SO was Helicobacterio Pylori.Not the cause of ulcera.Impossible.IT DOES NOT EXIST.
Morgellon sindrome is caused by different factors all correlated between them. It is not any
Mistery here.But this is not for WHO MADE UP their mind already.I'm busy now. i'm off to check this italian clap,to see whath it is, if there are relevant similarity.Morgellons it is U.S. denomination only.Simptom
and pathogen (AND PATHOGEN'S PATHOGEN) are endemic.
Also US CITIZEN MAY CHECK old potassium permanganate/formaldeyde/alcohol shower cubicle.Have a look about the story of it.From discovery of the sistem, trough it's actual use, to the cause bringing that pratice to an end. Will not get you the truth,but it may helb get a bit closer.
I'm off for some PHILOSOPHER's stone now.Well deserved break.
But I need to ask a question here: OZONE & SAURON:
HAVE YOU BEEN TO UNIVERSITY? I'm not ,both of you know already. I need to know for myself.Not polemics or fussy.
overall critic is better than silence, but open your perspective a bit ,guys.And your eyes ,on this "morgellons" thinghy

[Edited on 17-1-2007 by gil]




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[*] posted on 16-1-2007 at 21:10


I am not familiar with Morgellon's syndrome, nor do I recall encountering any cases recently meeting diagnostic criteria. Does not appear to be a lot of literature on it, beyond some anectdotal accounts. The etiology for this recently described malady remains a mystery. It is likely that Morgellon's syndrome will turn out to be a disorder with multiple causes, rather than the result of some newly emerging or previously unknown pathogen.

It is said that the CDC launched some kind of investigation into this as of July 2006. So...we shall see!

[Edited on 17-1-2007 by Elawr]




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[*] posted on 16-1-2007 at 23:29


@gil:

How old are you? Chances are I was at university before you were a gleam in your Daddy's eye.

We are talking about medical science and you are talking some likely internet hogwash.

You want to polemicize about American medicine, go right ahead. I'm not the AMA. But (1) try to make sense and (2) get your facts straight first.

Skepticism is not the same thing as prejudgement. Do you really accept everything you read on a frigging website uncritically?
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[*] posted on 16-1-2007 at 23:34


IT IS EXACTLY as you said,Elawr ,it's a multicausal skin disorder; most (if not all) well know.All correlated.
GRAM + and GRAM- ;ascaridi; protozoa,Filamentous bacteria, skin fungus ;algae, parassite,
Parassite of the parassite, etc. I take you are a praticioner, Elawr,are you? Wath is CDC?
THERE IS NO MISTERY, there is no single pathogen agent,But what this people experience is real.
The growth are algae, maybe fungus too,and filamentous. Live on the limphatic sistem,some on the blood,like filariae,and on the skin,sometime protected by a biofilm.This biofilm can be very strong, can grow and can move.It's sensitive to electrolite,to acids and bases.Most organisms are invisible under daylight/artificial light Some colored light and polarized light give better results.Some of them can move at incredible speed both outside and inside the body. some can carry small quantity of cream "with them"trough the body linfatic sistem.in a 1/10 of a second.
some are used industrially, like to make patterns on syntetic crocodile skin. some may have not been studied yet.
I found a way to color some of them while they are in the body.as soon as you mark them on a finger ,they can move TO THE OTHER HAND. And I don't belive I m the only one who know about it. I think
this is a member of the protea class.
I CAME ACROSS MORGELLONS(A SCAM) WHILE RESEARCHING ALL THE ABOVE.
ENGLISH INFORMATION IS SCARCE. I@M LUCKY I CAN SUPPORT IT with other 3 language i can fluently
read. All information is scarce.I understand why some information are scarce,but I don't understand this
MORGELLONS MISTERY SCAM THINKS.THE NAME IS A SCAM.
THE SINDROME IT'S REAL

[Edited on 17-1-2007 by gil]




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[*] posted on 17-1-2007 at 07:59


I thought Morgellons was constructed to promote the film A Scanner Darkly.



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[*] posted on 17-1-2007 at 17:19


Yes...

I am working on a PhD in Organic/Polymer Synthesis. I was persuing Toxicology, but decided that I did not like decapitating (well, severing the spinal chord thereof) guinea pigs and the like.

This time spent in research has provided me with one additional skill: cautious skepticism. I will not quash the idea immediately, but I prefer to see some data before passing judgement.

I have been watching this Morgellon's phenomena for some time, and remain unconvinced as the the etiology of the "disease" can usually be explained by some other, far more mundane means. For example, many of the "bits" removed from these lesions look suspiciously like synthetic fibers (or ingrown hairs) wrapped up in sebacious materials (grease, sebum, etc.).

In my memory the only agents producing rugged filaments like these are fungi (the fibers protrayed are almost like nylon or monofilament for fishing), but I have yet to see a fruiting body (or mycelium) in any of the representative micrographs.

From their own accounts, the leader of this organization is, I think, a nurse. As such, it seems plausable that she feels that there is genuine gravity to the condition and has organized these groups of people. I think that this group has become large enough to merit the investigation of the CDC, but an investigation doe not a disease make (until some pharma Co. makes a drug to cure it;)).

At any rate, for me, the court is still in session,

O3




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[*] posted on 17-1-2007 at 18:14


I assure you this is a real disease (infection/fungus/allergy/autoimmune disorder) or whatever. Obviously there are going to be some people who are out for attention or are just plain crazy, going on about some bizzar disease with symptoms from some sci-fi movie. But I have witnessed first hand the suffering of a couple of people who have this 'disease' and cannot be treated because no one can find out exactly what the problem is. One of them went from being a perfectly healthy young lady, to an ill, immuno compromised (no one knows why) skeleton of her former self. Almost all of her hair has fallen out, and she has many small open sores.
Her first somptoms were similar to what one would typically see if they had contracted body mites, or the like. The dermatologist she saw assumed that was the case and prescribed the usual treatment, but of course it didn't work. Nothing has worked. As of about 6 months ago (the last time I saw her) the problem had spread to her brain, where several leasions began showing up on brain scans which were done after she started having neurological problems. This woman is only in her 30's and she will no doubt die from this eventually.
Now, I'm no doctor, or biologist or anything else that has to do with the medical field. But I can tell you this thing is real. It is getting more and more attention from infectious disease specialist these days. But this thing has been around for years, and years and the fact that it was ignored for so long by most "experts" (i.e. CDC) has and will cause major problems in the future.
I do not have the disease, and I'm not on any crusade to try and persuade anyone who is skeptical. I just wanted to put it out there that I personally know that something, whatever it is, is definately making a lot of people sick. And no one knows what to do about it.
For what it's worth I also think it could be a fungus, or possibly a parasite of some sort.




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[*] posted on 17-1-2007 at 18:37


Hmm.

Idiopathic diseases.

I'd really like to get a representative set of blood samples from these people.

1) heavy metal panel (explains many of the skin/cognitive issues)
2) CLP pesticides (chloracne with the toxidrome is also implicated, as would be the wasting--this is not generally associated with Morgellon's at this time)
3) 1 and 2 have both been known to trigger mast cell degranulation and subsequent autoimmune syndromes
4) Decent epidemiology would be great here, clusters have been reported ( on the site) and 1 and/or 2 would also be coincident with that hypothesis.
5) Examine patient for auxilliary infection, say in lymph, where it can spread out--this is hit-or-miss and may not turn up anything even if the patient *does* have the problem. This would still be quite unusual for a bacterial infection (these tend to fulminate when entrenched this tenaciously), less unusual for a virus (like herpes or varicella zoster, which also has some similar symptoms in some patients) , and, I suppose, a slow fungus might be feasible. The nueralgia and sores would be consistant with latent V. zoster (shingles).

None of this accounts for the filamentous extrusion, however. Does your friend have these?

Just thinking,

O3




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[*] posted on 17-1-2007 at 18:37


Well there are such things as orphan diseases, which get little attention and funding because they are too rare. A recent well publicized example are the leukodystrophies (see movie "Lorenzo's Oil") where it took the extraordinary efforts of intelligent parents to develop a treatment for their dying son. They were World Bank officials, not scientists, but in the face of failure by the medical establishment they taught themselves chemistry, physiology, biuchem, etc and came up with a succesful hypothesis of the mechanism of the disease. And a proposed treatment. The film is actually fairly close to what actually happened. Their ereucid acid therapy did work, but not as universally as the movie makes out. It worked on some ALD kids and not on others. Their Myelin Foundation continues today, although the woman portrayed so memorably by Susan Sarandon has recently passed away.

I am not particularly suggesting that there is a facile cure for "morgellan's" awaiting amateur discovery but just that apparently until now whatever this is, has been just another orphan. The pharm industry must pick its fights and so must government, resources are finite. Every dollar we spend on disease X is a dollar we don't spend in HIV, SARS, avian influenza, ebola, falciparum malaria, etc etc etc. Who wants to play God and make decisions about what gets funded and what does not?

As the old saying goes, don't play God, because the position is not vacant, and you're no good at it anyway.
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[*] posted on 17-1-2007 at 19:00


Quote:
Originally posted by Ozone
(until some pharma Co. makes a drug to cure it;)).

Entirely too true, Sauron. Even so, much of the funding goes to those who produce minimal results in maximum time n order to secure...more funding.

God saves souls...and redeems them for valuable prizes,

O3




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[*] posted on 17-1-2007 at 20:27


M-kay,

Further perusal indicates that the fibers are effeiciently stained by calcofluor white, which react with polysaccharide polymers, particularly, those consistant with amoebaic cysts. The paricular amoeba of note, amoeba, Acanthamoeba, feeds on bacteria and as such, symptoms from either are either are difficult to deconvolute (the typical etiology of infection is ocular, particularly regarding abrasions due to contact lenses). An intersting bit of information is given here:

http://archopht.ama-assn.org/cgi/content/abstract/104/9/1309
then:
http://www.emedicine.com/med/topic10.htm

I do not think that this is exactly what we are looking for, but the possibility of dual infection is not defunct. [edit 1] On second thought, Acanthamoeba is known to be pathogenic in man producing a slew of neurological symptoms; I'd keep my eye on this one since Dr.s don't generally look for amoebas in N. Americans...

Let us examine other things which stain positive with calcofluor white, which seems specific for chitin (poly acetylglucosamine) or polysaccharides containing this moeity (unfortunately, bug parts would stain positive). [edit 2] I don't see, however any photographs using plane-polarized light, so, until I know more, the "birefringence" is suspect.

Well, here is a protist that produces "filaments" (although small by comparison with Morgellon's) and finds it's host in mosquitoes (is it possible that it has changed enough to find a reservoir or even a vector in the same species?).

a bit on Helicosporidia:

http://helicosporidia.ifas.ufl.edu/index2.shtml

[edit 3] Further, another protist, previously termed Megabacteria, now, a pathogenic yeast called Macrorhabdis orthanogaster, has been found (originally in budgies, but also in Rheas, Ostriches, etc.). This organism proved fatal to mice when injected interperitoneal. Some details are given here (bird poop vector to mammalian pathogenicity):

http://www.scielo.br/pdf/abmvz/v58n3/31018.pdf

Onward,

O3

[Edited on 18-1-2007 by Ozone]

[Edited on 18-1-2007 by Ozone]

[Edited on 18-1-2007 by Ozone]

[Edited on 18-1-2007 by Ozone]




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[*] posted on 17-1-2007 at 20:47


Here's a proposal that is almost serious, let me run it up the flagpole and see if anyone salutes.

1. This forum constitutes a community with a lot of intellectual resources and scientific knowledge that is highly diverse.

2. It is fair to say that we also have a leetle PR problem in the eyes of at least some observers.

3. Suppose those of us with the skills, jointly or severally, review orphan diseases and look for one that hold some promise of being tractible. I mean tractible by highly motivated amatuers, in same way that ALD was.

4. If we identify any candidate orphan diseases we again, jointly or severally, commence research on potential treatment.

If we get anywhere maybe they will make a film about us.

At the very least we would be able to point at the effort and show our critics that we are not mad bombers, drug crazed sociopaths and/or terrorists.

Orphan diseases by definition are those without enough of a patient base to be profitable, for the big drug companies.

The drug companies face enormous R&D costs and enormous lengthy FDA application costs and costs of clinical trials.

The parents of Lorenzo didn't face any of those. They faced an intellectual challenge to try to stave off a personal tragedy that was unacceptable to them. They rationalized the biomechanism of the disease, they proposed a treatent. First oleic acid. So obvious. It was partially succesful. They proposed another unsaturated acid, ereucid acid, the main constituent of rapeseed oil, instead of oleic acid. (Both in triglyceride form). The doctor advising them barfed on that because of heart disease in rat studies. Meanwhile their son's drain was demyelinating rapidly and so they didn't give a damn about heart disease in rats. They obtained the ester and tried it on their own hook. It worked.

You take my point?

We have more scientific background than they did (they had none.)

Surely there may just be such worthy challanges out there that merely need some cogitation to defeat?

It's worth a look isn't it?

We aren't going to cure cancer. But we might cure SOMETHING.

And it might even be fun trying because thank God none of us has a dying child of our own to motivate us.

[Edited on 18-1-2007 by Sauron]
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[*] posted on 17-1-2007 at 21:05


Sauron,

I'm in, see above post (which is growing as I know more *without* increasing post count;)). That sound's like a great idea to me.

Go Saints!

O3




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[*] posted on 17-1-2007 at 21:30


Some general comments on the concept

If possible no doctors (MDs) just because if any are involved they will hog all the credit. (If any). Med students are okay. EX med students even better.

It needs to be something that seems tractible but that essentially no one else is currently working on. It might be hard to find a disease that meets both criteria.

We can's post progress or blog this because if we are getting anywhere some other team may see it on the net and grab it. we need to think in terms of intellectual property - even if in the end we license it out freely, we want SM to have the credit.

If we get anywhere we probably ought to organize a nonprofit foundation with a respectable name so we can solicit grants etc.

Obviously these are just my personal ramblings, open for comment. Thjis is supposed to be a group venture. A collection of amateur Don Quixotes tilting at medical windmills. Proving that amateurs have a contribution to make.

So much is serendipity. Perkin's fortune rested on an accidental dye. Fleming's penicillin on a pice of moldy bread. Perking got to take the rest of his life off at a young age and do "pure" science because he got so filthy rich off his dyes.
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[*] posted on 17-1-2007 at 22:36


OZONE is gettin near and near.You seem to have very good knowledge.Algae,fungus, filamentous bacteria ,lichens,all may have something to share whith it.

All to often pratictioner, family docs. ,have to cater for any kind of complaint. If they aren't familiar whith it,
Reference books are used. But if the patient complaint it's not on the book, that it's a blind lane.

Specialists, a Microbiologist in this case, use "Markers" , reagents, to investigate. They can find what they
know,new or mutant pathogens may easily go undetected.I think the same apply to DNA / RNA. (not sure)

In dermatology cross-diagnosis are all to common. Uncertain causes abound.
Ascariology can classify only 5-10 % of estimative total organism ( 50.000 out of 500.000-1.000.00 if my memory still working). I don't know bacteria figures, but I'm confortable to say much still out in the dark.
To add a bit of speculation, ice melting may add a few newcomers.
Parasitology is making good progress. New unconventional approach are opening new roads.I see this
it's just the beginning. I think Medicine ,in general, is picking up "momentum", in a better direction,too.
One of the big breaktrough of the last century, antibiotics, show too many limits.Maybe will end up
as phenols did : good, but not enough for future society standards. We are already antiquate, for future generations. If eventual big breaktroughs will be deemed "pratical" or profitable, it's another matter.

We are so many now. Disease can spin money around, but better healthcare can be a moneyspinner too.
aaallleeluujaaa




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[*] posted on 17-1-2007 at 23:03


HILSKI.
whath your friend has is more like an amoebae abscess."Morgellons" simptom mnemonics does not aqccount for morbidity. It's a derma's complaint. That's why received little attention from medicine.
P.s. Body mites prognosis HAS to be done collecting scraping of derma and put them UNDER THE MICRO. The guy(?) can't
just <assume> thinks up! This may be ground for a compensation case.
SAURON.
I n my opinion , it's not a single pathogen. The fibre maybe, but other simptom differ.I'm talking about the
flying , fast object flashing past the visual field corner, for example.
I wouldn't be surprised if will slowly reduce incidence, and stop once more. to reappear the next generation.effimerous morgellons!
The Appalachian Indians, they had good Knowledge, centuries ago,by that way.

[Edited on 18-1-2007 by gil]




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[*] posted on 17-1-2007 at 23:25


@gil, I don't think I made any remark about a single causitive organism. Syndrome implies multiplicity.

And I was talking about the mountains and region not the tribe. It is fashionable these days to attribute all sorts of wonderful qualities to native Americans of old. Personally I am a little sick of such revisionist claptrap.
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[*] posted on 18-1-2007 at 00:11


@ sauron
That's why I call it sindrome not disease.
Appalachian= cue (maybe unrelated,maybe not .I'm trying to find out).More will follow.

Scabies < /> mites>Every 30 40 years : Explosion cases wordlwide.40 & 75 years ago :lesser investigative tecnology. Also U may check DDT first deployment.I.ll back to it.No good noW




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[*] posted on 18-1-2007 at 00:16


Quote:
Originally posted by Sauron
We can's post progress or blog this because if we are getting anywhere some other team may see it on the net and grab it. we need to think in terms of intellectual property - even if in the end we license it out freely, we want SM to have the credit.


If we're afraid of people stealing our work, why not put the thread in Whimsy? That subforum is not indexed by Google so I doubt anyone but a member of this forum would even know about this effort.




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[*] posted on 18-1-2007 at 00:42


Scabies are a problem in Cambodia but absent in Thailand.

It's a difficult infestation to get rid of. All clothing and bedding, linen etc must be landered at heat for a specified period, the affected individuals apply a specific topical cream* head to tow except for face. Nothing else is efficacious.

Canine scabies similar and are cause of mange; canine scabies can infest humans only transiently as they cannot reproduce on humans.

* If memory serves a 1-2% ointment of Lindane (benzene hexachloride) not to be confused with hexachlorobenzene however!
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