Dec 27 2006
NPR Morgellons
This NPR piece just tells the story of Morgellons:
http://www.npr.org/templates/story/story.php?storyId=6685822
It’s reasonably well done. Of interest is that the CDC expects their investigation to “take six months and cost hundreds of thousands of dollars”. Which means you probably won’t be hearing anything from the CDC until sometime late 2007.
Still, it looks like the medical profession is forging ahead - again in the story is a mention of simply taking the name “Morgellons” and making it synonymous with Delusions of Parasitosis. Overall, I feel the discussions surrounding Morgellons will eventually lead to the development of better ways of treating people with DOP, as well as some investigation into various physical triggers for DOP/Morgellons.
Print This Post
I think it’s sickening that morgies forced the hand of the CDC, and I feel sure that many will still refuse to treat their “morgellons disease” when the investigation is completed. I sure hope it’s going to end up leading to different ways of approaching them, because their selfish refusal to treat is endangering innocent others. That is not nice of me to say that, is it? I know, but, it’s not nice to be as pigheaded about needing mental health assistance either, and to talk openly about crimes of self abuse, and various crimes of neglect, like it’s normal, either, and to blame it all on “morgellons disease”.
Smileykins said…
I do too, but, by the definition of DOP, people have a “fixed” false belief. There aren’t too many things that will unfix it, and antipsychotic medication is the most successful approach. That fixed belief is preventing them from believing their doctors, and following his prescribed regimen. Counselling is also out of the question.
I don’t think they are going to be tricked into taking antipsychotic medication. They’ll be watching for their delusional doctors to try to get one past them. I don’t see any way of helping these people. Some borderline DOP’s may fall off the Morgellons wagon after the CDC’s report, and some would be Morgies might be discouraged from going that route, but other than that, the situation looks hopeless. It’s one hulluva trap they’ve fallen into.
Tall Cotton
The Morgies at Lymebusters didn’t like the article.
http://lymebusters.proboards39.com/index.cgi?board=rash&action=display&thread=1167265461
Well, now, Smiley, I disagree respectfully. I think that all medical questions are valid to the CDC, and while it may seem, and is probably true, that the MRF et. al. pushed and forced very aggressively, the investigation should not be belittled.
However, everything else you said… I’m right there with ya.
I’m not belittling it, Sarah. I want strong action to be taken.
I feel that the CDC has known, for several years, that the Morgies have DOP. The CDC has repeatedly told the Morgies to consult their local doctors. I believe that the CDC is now being forced to formally investigate the matter, which, of course, isn’t going to change the diagnoses, or the recommended protocol for DOP. The CDC is concerned about the people’s questions, but that doesn’t mean that they have the time or resources to be doing what they were eventually forced to do. Do I want my tax money to be spent on another paper about DOP? Hell no. It’s a waste of time and money. If the CDC is to guide the public on medical issues, it’s important that it maintains the respect of the public. In that sense, this task force is a maintenance proceedure. I find it sickening that Mary Leitao has been allowed to continue her “movement”, and do it openly, to get Morgellons classified as a disease. In my opinion, she has been a great negative influence on a lot of people, and she has needed mental treatment for many years.
Tall Cotton
Michael you are an ass! I hope you get this thing and it kills you by a long, slow agonizing death. You don’t even have the balls to let me post because you know that if people see what I have to say then you will be exposed for the mental midget that you are. What is your degree in? I bet you work at KMART you looser.
What a fool you are. By the way, the world is round. Come into the 21st century you idiot. You probably think that AIDS and Ebola are fake illness too. I guess you have to have something to occupy your time because you obviously don’t have a life. This thing is spreading and I’m doing my part. Sleep well looser.
Lorri,
You’ve been posting, stupid, and we’ve been answering your nonsense. Don’t be comparing Morgellons to real diseases. AIDS and Ebola kill people. People who “believe” they have Morgellons only whine like little babies. You have a mental problem, and you’re wearing it on your sleeve for the whole world to see. You’re the ass, and you’re the fool, and if you don’t realize that you’re the loser, take a good hard look at yourself.
Tall Cotton
Hello South. I see you’re still trying to make people think you know something that you don’t. TC
Fascinated by this topic, I’ve spent the day exploring several sites devoted to Morgellons. By the far the best is the one in Germany, where a great deal of research has already been completed. I encourage anyone seriously interested in this odd disease to visit:
http://www.morgellons-research.org
(If you don’t speak German, you’ll be able to choose an English-language site from this page. Be forwarned: Some translation is clumsy!)
In the left part of this site, under the heading “Click on Menu,” click the first entry, “Morgellons-Report” to expand it; then, click the last entry, “Latest conclusions.” It presents an insightful summary of findings that, surely, the CDC will carefully investigate. And which I hope you all will find stimulating.
It makes so much sense, based on everything I’ve read today, that this is an artificially created bio-organism, created in a gene laboratory with the best of intents (for example, in search of a cancer cure, etc.) but which has inadvertently inflicted unintended consequences. Read for yourself.
From the “Latest conclusions” area in the site, work back up through each of the topics in the “Morgellons-Report” for detailed information; the “Introduction” is also full of insights.
I’m eager to hear what you think.
Here’s a good link on Scizophrenia.
http://www.mentalhealthchannel.net/schizophrenia/course.shtml
TC
Lorri, you’re beyond being irrational and uncivilized towards Michael. That’s not anything resembling what many morgies think they’re able to get by with passing off as simple “brain fog” either. Yes, *this thing is spreading*, and YOU ARE doing your part. The “morgellons movement” has clearly gotten society to wake up to the problem.
DHB,
Thanks for posting the link, but theat information is bogus.
Tall Cotton
No, I don’t quite think so. Thanks, but that’s a site for delusional parasitosis, same as other sites about “morgellons disease”. Did ya read about the hygienic measures? When I’d had DOP, I didn’t practice all that type of stuff. I had a mess on my hands, no question about it, but I didn’t try to keep up with thinking I could get rid of anything through doing a lot of the hygienic rituals that morgies do. I knew it was whipping me out right away. My skin was so fragile that I couldn’t wear clothes, and, hehe (I can laugh now), things were exploding out of me all of the time, so badly, and getting into my food, that I tried fashioning a garment out of aluminum foil to try being able to eat. It didn’t help any, either. Can’t nobody tell me that “morgellons disease” ain’t DOP.
Michael is a “looser”? And he’s the idiot?
(Who’s with me, that condescending, angry, name-calling really changes your mind? ;))
http://www.morgellons-research.org
So I went to this site.
It claims “we concluded that various body structures were visible” but doesn’t say what body structures were visible! If they are visible, shouldn’t whoever this is be able to say what structures were visible? Because they sure aren’t visible to me.
Here was another gem:
“But mostly the spreading in nature or a direct human infection is taking place over a kind of fungal spores (fibers).”
What on earth does this mean? And what do spores have to do with worms, what they “identified”?
Hardly convincing.
“This process [sampling] was complicated due to the oblong fibers, worm structures that had both ends, autonomously with head, feelers, hooks and/or mandibles.”
Feelers, actually, are called “antennae.” Perhaps that’s just a personal snobbish preference for taxonomically appropriate nomenclature.
“Present not only as fuzz balls, but also inside of human slime and/or pieces of dead skin.”
Human slime? The only thing I found after Googling “human slime” were video game message boards.
“After further investigations it`s well known that there are insectozoide manifestations, as well as multicolored fibers and algae/bacteria and fungal forms.”
They recommend, to understand how “Morgellons” can be a fiber, an insect, an algae, a bacteria, AND a fungus, we compare Morgellons to trees that “bear different fruit,” such as, an apple on one branch, a pear on the other. So while “Morgellons” is one entity, it just grows into different life forms. The problem with this comparison is… that’s just ridiculous. For the same reason a puppy can’t grow up to be a bird, or a human can’t give birth to an insect, it’s just basic ignorance to think an organism can just magically grow into several different life forms.
Oh, the lingo. Maybe our bodily secretions, wet and dry, and the various things they can do, pose a real threat to us all, but we just haven’t realized it yet. Pick your nose and look sometime. There might be a hair in something that looks like a booger, but maybe that really isn’t a booger. Maybe that really isn’t a nose hair. Maybe we aren’t the ones hallucinating, too. I’m not entirely sure that some of these poor people don’t know that a puppy can’t grow up to be a bird, or that a human can’t give birth to an insect. I wish the poor things would treat it, and be well. Yeah, right.
Dear friends,
Thank you all, especially S Bione-Dunn, for taking the time to explore the German website (http://www.morgellons-research.org) and post your critical evaluations of its content.
I am not a scientist — I’m a designer — but I’m fascinated by the controversy that has developed over the claim by some of suffering a delibitating illness, which is supported by physical evidence, including not only photographs of lesions on their skin but also photographs of the material ejected from the lesions. Indeed, this very material is being examined by a researcher at the University of Oklahoma today. And, in his recent newspaper column, “The Bug Man,” Richard Fargerlund, an entomologist at the University of New Mexico, reports that he regularly receives so many letters from people suffering the the Morgellons symptoms that he is now asking readers with material ejected from their lesions to prepare it for shipment as if it were an insect and send it to him, in hopes of establishing a national database for use by the Centers of Disease Control. (His own theory is that the source of the illness is an unlisted and untested ingredient in pesticides.)
You all are probably familiar with the story of the Oakland A’s pitcher. Not only has his career been ended by the disease, but his entire family (wife and three children) all suffer from it — quite a delusion, indeed!
What I found so compelling at the German site were the “Latest conclusions,” as reported in the “Morgellons-Report” (listed at the top left of the website):
———–
“Morgellons are parasitic bio organisms, which were created artificially in a gene laboratory. Thereby the oldest bacteria, the basic modules of life on earth (Cyano-bacteria/single-cellular organism), was randomly mixed (cloned), in a recombinant process with other gene sequences (DNA) of single-celled or multi-celled organisms.
“In the later stages there were also higher multi-cellular organisms developed, on the basis of a constant genetic recombination and by a genetic information exchange on the cellularer level (signalization) designed to mutate by necessity. This, in short, represents our evolution, since all organisms descend from this Cyano-bacterias, which later developed themselves further into multi-cellular organisms. (See details under biology)
“Morgellon`s are at the same time Ecto and Endoparasites because they can live on and in the skin as well as in the body of the host. These parasites live mainly subcutaneously in or near the lymphatic system which are the (fine) vein systems. The lymphatic system extends over the entire body (see below). This fine vein system extends further than blood system with its fine capillary system.”
“It is that assumed after exacting studies that there is neither evident acari nor helminthes kinds (e.g. scabies or worms/filaria) but some genetic resemblance to many different organisms: insects, bacteria, worms as well some types of fungus and algae (Protozoans, Trypanosome, Protothecosis etc.) and partially also mammels genes (mice, humans etc.).
“The only commonality all of these organisms have, is their will to survive by any means. Due their extreme adaptability, as well as their minuscule size, they can adapt and settle in all areas of the host`s body. But mostly they live subcutaneously (under the skin), on hairs and in or near the lymph system.
“The basic form of this parasitic organism is probably a kind of a very creative living mold/slime (Cyto/Protoplasma), with more fungal and algae characteristics (e.g. green and blue algae etc.). Due to similar genetic characteristics of other organisms that have a similar DNA, additionaly from multi-cellar, they can mutate/switch at any time into another life form, or being present and growing out of this mold with many different life forms at any time.
“It may be possible, that via an assimilation and integration/metabolism of human based engineering materials (protein), after a certain period a fusion/merging with human cells can take place, which our immune system cannot recognize anymore and fight against. This is because they become practically part of the human body system and their basic structural makeup is very similar to ours. Sometime they can even appear as wandering skin sheds, unrecognizable to usual investigations.”
———–
So, based on everything else I discovered while exploring this topic through Internet links, the conclusions at the German website appeared to me to “tie up a lot of loose ends” — to provide a theory that explained much of the apparently contradictory evidence.
I thought it was a bold, creative leap for these investigators to hypothesize that, based on their observations, the source of the disease could be a bio-engineered form of life, probably created in a laboratory seeking to end a scourge like cancer, but inadvertently releasing an organism that can attack the human body as described by the growing number of sufferers — the law of unintended consequences.
All in all, of course, we’ll just have to wait and see. Clearly, more and more people are interested in solving the mystery; with the CDC undertaking its study, Congress demanding answers, and even “The Bug Man” getting involved, we’re bound to find the answer sooner or later. Thanks to each of you for your stimulating comments.
Happy New Year to you all!
DHP,
We’ve all known about the German website since it was created. We’ve read it many times. It’s still as nonsensical now, as it was the first time we read it. Trust me! The information is false. There is no Morgellons Disease. There is no Morgellons pathogen. The people who believe they have Morgellons, have a wide variety of common skin disorders. They are also delusional. This particular phase of DOP began with a woman who was suffering from Munchhausen Syndrome By Proxy. She’s still picking at a 5 year old lesion on her son’s face. It was recommended that she have a full mental evaluation. Most of the lesions on the internet, that are said to be Morgellons lesions, are neurotic excoriations. The bugman is an entemologist, but this issue has nothing to do with arthropods, or any type of organism, for that matter. He also wants 10 bucks for every species one mails him. Sounds like a money making proposition to me. On the other hand, I think that Dr. Wymore, from OSU, is just a nut. Happy New Year.
Tall Cotton
DHB,
How can it be just stated, as if a fact, that “Morgellons are parasitic bio organisms, which were created artificially in a gene laboratory,” and then later you call it a “hypothesis”? Which is it, fact, or a hypothesis?
All of their claims are devoid of any proof. So what, if someone is researching it in Oklahoma, or that a famous person claims to have it? People research UFOs, and Madonna claims to be able to “cure” toxic waste with magic Kaballah water, and both of those hold as much water (even Kaballah water) as the Morgellons supporters. They say that Morgellons was created in a lab. Fine. How do they know this? They say Morgellons is able to “switch life forms” but how do they know this utterly impossible snippet of information?
(Furthermore, just the words “gene laboratory” sounds like bad Twilight Zone writing.)
There are really two delusions going on here: 1) Delusions of Parasitosis and 2) Delusions of Reference http://en.wikipedia.org/wiki/Ideas_of_reference
Those subscribing to nanotechnology, biowarfare, chemtrail, and the myriad of other commonly espoused conspiracy theories suffer from Delusions of Reference.
You are a Russian spy, your hair falls out, you become critically ill and you discovered to be perfused with an obscure radioactive material. You can legitimately assume you are the victim of some sort of a conspiracy.
You live in Texas. You have a normal job and life. You develop unexplained itching and skin lesions that physicians are unable to diagnose. This is not a conspiracy.
The frequent tendency to invoke conspiracy as the etiology of Morgellons simply buttresses the theory that the entire problem is neuropsychiatric in nature.
DHB, how many days into “morgellons disease” are you?
DHB, excuse me. Thank you, and Happy New Year to you, too.
I agree with you, Gobucky, and whatever the actual number of “morgellons victims”, even if it’s a mere drop in the bucket of society, it’s too many. It’s a very dangerous situation people are in.
In the past, there were some people on lymebusters’ message board that I hope really meant what they’d said, and actually went on to recover. We’d corresponded by email, and if they did as they’d planned and got over it, they were obviously ill with DOP from an underlying physical cause. Recovery is possible, that way (listen to me, making it sound ’so easy’), without anti-psychotic medication, if the underlying physical illness is treated.
But yeah, people with delusions of reference…forget about it. They can only pay attention to their senses to start with. To them, those ill-begotten references make excellent sense. Of course, once I’d entered into this scenario I knew I could never be frank, and had to call this “morgellons disease”, but some morgies saw through it and hated me. One is never to recover from “morgellons disease”. Since the time I used to try finding a way to break through, somehow, they seem to have really gotten worse with everyone, and everything, on all the morgie message boards.
When I was sick those two months, in 2002, I didn’t do the majority of things morgies practice, and I didn’t own a microscope. However, I lived in The Twilight Zone, too, and I saw unbelievable feats performed by things expelled from my mouth and skin. It was dead cellular waste and environmental debris, but Lord have mercy. Hallucinating, and, of course, not knowing it, caused me to think I was harboring some strange pathogenic substance. Anybody would think like that, being under siege of real-life science-fiction.
None of these people will listen to reason from any reliable source. To be so tortured and tormented in a chronic state like that, and not want to get better, well, it’s like the ONLY statement I can appreciate in that letter published by the Bugman, at the end, where he said,
Well, yes, we do.
In addition to the somatic and the persecutory types of delusions, some also have those of a grandiose type, believing that they are going to sue some party that has brought the scourge of Morgellons to mankind, even the score, get rich, and live happily ever after.
TC
When Mommy Munchhausen brought them out of their closets to accomplish her personal agenda, she succeeded in making herself and all of them look like fools.
TC
WELL HERE IT IS A NEW YEAR
I HOPE ALL ARE HAPPY AND HAD A MERRY CHRISTMAS OR HOLIDAY OF PERSONAL CHOICE
I DONT FOLLOW ALONG HERE ON A DAILY BASIS BUT DO CATCHUP ON
WHAT IS WRITTEN HERE FROM TIME TO
TIME
YOUS GUYS FOLLOW THE MORG NEWS TRAIL
BUT I DO HAVE SOME COMMENTS THAT I FEEL COULD ALSO EXPAND SOME MINDS AND THOUGHTS OF OTHERS
#1) I M NOT A MORGIE–BUT I AM A LYMIE
#2) THE CDC–I DONT REALLY TRUST THEM AND HAVE HAD NO POSITIVE
FEEDBACK OR SUPPORT FROM THEM
#3) IN THE OLD DAYS OF MRF
THERE WAS A HIGH PERCENTAGE OF
MORGIES THAT TESTED POS FOR LYME
THUS I THOUGHT THE CONNECTION TO
LBs (lymebusters) WAS RELAVANT
AND FITTNG –AFTER TESTING FOR LYME AND FURTHER INTERNET RESEARCH
ON LYME I FOUND THAT THE TWO DISEASES HAD VERY MUCH IN COMMON
AND NOT ONLY IN THE MEDICAL ARENA-
BUT IN THE POLITICAL ONE AS WELL
#4)WHAT IS THE DEFINITION OF A PARISITE???WHAT KINGDOM(S) ARE
THEY IN ???
#5)WHAT COMES FIRST ?? THE DELUSION OR THE PARASITE ??
#6) NEURO TRANSMITTERS CARRY THE SIGNALS FOR PAIN/FEELING AND FOR
EMOTION/WELLBEING TO THE SAME AREA OF THE BRAIN BUT TO DIFFERENT
SPECIFIC PARTS
#7) WHILE I AM NOT PROVIDNG ALL I THINK I KNOW ON THESE SUBJECTS
(I DONT LIKE TO TYPE THAT MUCH)
I INVITE THE 3 WISE KEEPERS OF THIS OF THIS BLOG TO EXPLORE THE ORGANIC SIDE OF THEIR THEROIES
INSTEAD OF JUST BEING ANTI MORGS
THAT PROMOTE THE USE OF PSYCH MEDS
WITH OUT ACTUALLY KNOWING THE CAUSE OF THE SYMTOMS PRESENTED
EVEN THOUGH THEY SAY BELIEVE OTHERS ARE SUFFERING FROM MANY POSSIBLE THINGS–THE PSYCH MEDS
IF USED ARENOT THE CURE ALL FOR
ANY CONDITION AND FURTHER STUDIES OF THE PATIENT ARE NESSACARY TO FIND THE CAUSE OF ILLNESS–BUT THERE IN LIES THE PROBLEM–NO
ONE WANTS TO HELP LOOK TO FIND
THE CAUSES
#8) THERE HAVE BEEN AND STILL ARE
SOME BRAVE SOULS OUT THERE DOING RESEARCH AND STUDIES AND DEVELOPING NEW METHODS AND TESTING
BUT THEY LIVE WITH THE FACT THAT BIG BROTHER IS WATCHING AND THAT
BIGBROTHER CAN TAKE AWAY
#9) ITS REALLY ALL ABOUT OUR RIGHTS AND FREEDOM TO PRESERVE OUR HEALTH AND LIVE OUR LIVES AS WE SEE FIT–NOT THE RULES OF THE LAND THAT DETERMINE IF WE KEEP OUR HEALTH OR NOT—WHY IS NATURAL MEDICINE SO POPULAR?? BECAUSE WE
CAN HELP OURSELVES WITHOUT BIG
ANYONES HELP
#10) I AM NOT A MORGY AND HAVE NEVER CLAIMED TO BE A MORGY
I DO HAVE A VERY HIGH RATE OF Bb INFECTON— I ALSO PRESENT WITH
MORG SYMTOMS—IT IS DIFFUCULT TO
PROVE INFECTION WITH Bb THROUGH
NORMAL MEDICAL CHANNELS–PUT EASY TO PROVE WITH PRIVATE RESEARCH
STUDIES—TREATING Bb ON THE OTHER HAND IS COMLICATED SINCE MOST CASES ARE ALREADY CHRONIC LATE STAGE BY THE TIME THE PROOF IS
SHOWN
PEACE-LOVE-KINDNESS-FOREVER
EEC
I CAN BE REACHED AT EEC4AJS@WEBTV.NET
It’s pitiful, in every sense of the word, and just how can anybody attempt communication with people operating from a delusional standpoint? DOP is a complicated matter, anyway, but the people who are listed, originally, on the MRF’s site, obviously have the primary psychotic form and the secondary functional form due to underlying psychiatric conditions. For the most part, the patients on line think they can deny that, even with it blaring at us there, and even with their on line behaviors.
The Following Six Signs or Symptoms Are The Basis of Morgellons Disease
4. Cognitive difficulties, including measurable short term memory and attention deficit, as well as difficulty processing thoughts correctly. Described by patients as “brain fog”.
5. Behavioral effects are common in many patients. Many have been or will be diagnosed as Attention Deficit Disorder, Attention Deficit Hyperactivity Disorder, Bipolar Disorder, or Obsessive-Compulsive Disorder. A minority do not show this pattern. Almost all, if previously seen by well-read physicians without prolonged observation, will have been labeled as “Delusional Parasitosis”. Temporal relationship to skin lesion onset is not known.
OTHER COMMONLY REPORTED SYMPTOMS AND SIGNS
2. Numerous neurological findings. A variety of neurological symptoms have been reported. Some patients have been diagnosed with Amyotrophic Lateral Sclerosis, Multiple Sclerosis, and other well-known and recognized disorders, while others display significant symptoms not falling into any well-defined neurological category.
4. Neuropsychiatric symptoms and signs, ranging from mood or personality changes to diagnosed disorders including Attention Deficit Disorder, Bipolar Disorder, Obsessive Compulsive Disorder and occasionally frank psychosis. Temporal relationship to skin lesion onset is not known.
REVIEWED BY:
William T. Harvey, MD, MPH
Michael Ledtke, MD
Ginger Savely, RN, FNP-C
Raphael B. Stricker, MD
Gregory V. Smith, MD, FAAP
Medical Advisory Board
Morgellons Research Foundation
That’s quite a Medical Advisory Board.
Morgie people lash out at us because they’re sick and confused, they feel persecuted, they’re paranoid, and because some of them have inflated egos. There’s no bridging the chasm. Birds of a feather flock together. Notice how many say that eating sugar makes their “morgellons” symptoms worsen. They don’t even want to hear that could be diabetes. No, it’s all “morgellons disease”. It’s insidious, it’s mysterious, and that’s why they have to search for clues to it, outside-of-the-box.
Look at all this link, including so much in one convenient place…
http://www.marslife.com/morgellons.htm
Dr. Gobucky,
I agree with everything you said. Some Morgies have delusions of reference. For example, they believe that a Morgellons pathogen was accidentally released after being genetically modified, without the paranoia that they would have from a deliberate release for the purpose of population reduction. I do believe that Morgellons is neuropsychiatric in nature, at least in many cases. Thanks for your contributions to the blog.
Tall Cotton
Michael, I’m sorry, I was away, and didn’t realize I had already submitted a comment, until I revised what I was meaning to say, and sent it. I received a statement that I’d submitted it previously. The second one was the only one I’d meant to send. Now, see? That’s brain-fog. Hehe.
Hmm. Maybe I didn’t have a case of forgetfulness, earlier. Hahaha. Perhaps I’d accidentally double-clicked, when I submitted a comment, so I got the notice that I’d posted a duplicate. Oh well, it confused me.
Anyway, Wikipedia covers all the recent controversy on chronic lyme, that I’d brought up a couple of weeks ago, but, sure, people who fit into this category can, and often do, fit into “morgellons disease”, also. In my opinion, that’s why lyme has so many differentials. Unconventional doctors, in my opinion, especially ones who have been in trouble in the past, know how to make a good, dishonest, living. Some people will pay very good money to be told what they want to hear, and that makes a big difference to them.
http://en.wikipedia.org/wiki/Lyme_disease
I disagree with many things you mentioned, eec, but since you “aren’t a morgie”, and since I am a former DOP, my opinions are covered well enough. But, concerning this….
“Our rights”? Yes, I agree, but this issue is not about “our rights”. It’s about a group of mentally ill patients refusing to treat, who forced the government into their affairs. They harassed the CDC (and even continue to), but after the mass media aired their stories, the CDC had to take action. These people are NOT preserving their health. They openly tell how they cause themselves harm, and endanger their children, their pets, and probably others in their lives. Anybody who abuses antibiotics is putting the entire population at risk, too. Psychosis is something that has to be treated!!
Food for thought. Note the dates before assuming that this happened decades ago. This is not the entire article.
Southcity
Doctor and invention outlast jeers and threats
Vertigo - John Epley’s chair conquers dizziness, wins acceptance and has a business plan, thanks to his daughter
Sunday, December 31, 2006
JOE ROJAS-BURKE
The Oregonian
“He is a doctor and innovator. Years ago, he took aim at a medical curse that has disabled millions of people and defied treatment. He came up with a cure that was astonishingly simple. No surgery. No pills.
Now, think: Would his colleagues cheer his stroke of ingenuity by spreading the news — and practice — of the treatment to relieve suffering?
No. Inexplicably, they rejected him, ridiculed him, heaved accusations that threatened his license to practice medicine.”
“At 76, Epley sees patients three days a week. He spends the two other days of the workweek at Vesticon. His daughter’s startup has already launched development of two of Epley’s other inventions.
In a pause between patients, Epley reflected on the reasons other doctors refused to accept his findings for so many years.
“If I look back at medical school, much of it was misinformation,” he said. “Physicians learn to just do the routine, to do the accepted things — don’t go too far out.
“They’ve got so much to lose if they stick their neck out.”
http://www.oregonlive.com/news/oregonian/index.ssf?/base/business/1167379031269360.xml&coll=7&thispage=1
Southcity,
Doctors have invented lots of things and have made lots of discoveries. Just what the hell does that have to do with DOP/Morgellons? Let me answer. Not one damn thing!
Tall Cotton
South, I think I can understand the point you’re trying to make, but I fail seeing any relevance in it. The article says that doctor “took aim at a medical curse that has disabled millions of people and defied treatment. He came up with a cure that was astonishingly simple.” I just don’t believe things that easily. There are plenty of treatments for vertigo. I get it occasionally, but I don’t view it as a “medical curse”, or even treat it. It passes in 3-5 days, so lying perfectly still, keeping a puke bucket, and crawling on all fours, works for me. If it were more of an interference than that, I’d take something for it, like ativan.
You scoff at my convictions. I think I have made my reasons for having them crystal clear. What are the reasons behind your convictions?
yes smiles
point well made on my topic #9
which is even more proof i am not a morgy–i have been working with the same DR since my symtoms began
in august 2003–and we work together to maintain the highest level of health i can–
i want to work and earn $62 an hr
i want to study massage-health and fitness to learn and practice how to have health and longevity in
life
thats probably why i got removed from there guest list
i wasnt on the tam-tam band wagon
now there was some evidence of
mass delusions
on the other hand wiki-up-pedia
is not the only material on lyme
it is a thought provoking disease
whic is why it is dismissed so often–too much work and thought for the DRs
all the symtoms of morgellons
are clearly covered by ACA
now i dont know that all morgys
have lyme–but most didnt want to look either—the admin at LB
didnt encourage seeking any solution to suffering but had lots of love and sorry sad sympathy
for each other
i am not here to pick a fight
i do agree with some or a lot of what is said here–but some of the topic points made here are a little abrupt against psychological–neurological conditions that are part of a true
infection
peace-love-kindness-forever
eec
I’ve got it. You have the right to remain ill.
South,
Every doctor that treats Morgellons as anything besides DOP is operationg in the fringe or beyond. Dr. Stricker, who works with the MRF, was discovered to be lying on an AIDS research paper in order to land a grant. Dr. Ames, who also works with the MRF, was caught using a gadget that wasn’t approved by the FDA. Both of these doctors were penalized. Nurse Savely’s liberal antibiotic treatments were disallowed in Texas. She now works with Dr. Stricker in San Francisco. Dr. Schwartz lost his license in New Mexico because he couldn’t account for narcotic that he prescribed. He allegedly used narcotics to treat Morgellons patients. There’s becoming more and more quacks as time passes, looking for ways to cheat Morgies out of their money. Outside the box is no place for a Morgellons patient to be. They don’t need to do business with doctors on the fringe. The need a real good GP, and a good psychiatrist, and they need to break ties with the forums of the Morgellons Believers. Now, those are facts, and they’re pretty simple to understand.
Tall Cotton
eec, the topic is “morgellons disease”, but, as I’d said, my reason for posting the Wikipedia link, since you’d brought up lyme disease, was due to its updated concision on the recent problems. I’d brought it up a short time after the announcement, last month, when I’d also posted about Dr. Stricker’s past, his new lyme test, and about Dr. Ames’ past.
Can you elaborate on this?
Also, what is the ACA? Thanks
eec, I wasn’t directing that, “I’ve got it. You have the right to remain ill.” to you. Comments were in moderation, so it appeared as though I was. I’d posted it after I’d said, “You scoff at my convictions. I think I have made my reasons for having them crystal clear. What are the reasons behind your convictions?”, to South. I shouldn’t have said it, but he refuses to answer even the simplest of questions that I ask, after he makes statements, and he’s just never tried communicating to promote any understanding. That’s all I want, and I lost my cool. I’m sorry, South.
http://www.nlm.nih.gov/medlineplus/news/fullstory_40887.html
Now, think: Would his colleagues cheer his stroke of ingenuity by spreading the news — and practice — of the treatment to relieve suffering?
No. Inexplicably, they rejected him, ridiculed him, heaved accusations that threatened his license to practice medicine.”
“If I look back at medical school, much of it was misinformation,” he said. “Physicians learn to just do the routine, to do the accepted things — don’t go too far out.
“They’ve got so much to lose if they stick their neck out.”
TC what do you not understand about how this relates? smiley, atavan huh? yes, your convictions are quite clear.
South, I’m very sorry, but what are you trying to tell us? What that doctor has done still has nothing to do with delusional parasitosis and any of the underlying conditions that cause it. You, and other “morgellons disease” believers, form opinions based on far less information than the rest of society, and you hold onto them tightly, expecting people with intact reasoning skills to understand how you arrived there without telling us. None of you have gotten any resolution to your individual health situations, and you seem to think that the rest of society can’t see that you’re all, sadly, free-falling without a parachute.
To me, saying that the doctor in your article, “Took aim at a medical curse that has disabled millions of people and defied treatment”, and that he, “Came up with a cure that was astonishingly simple”, isn’t completely sound. There are a lot of reasons for vertigo, such as multiple sclerosis, strokes, tumors, seizures, trauma, infections, drug toxicities, migraines, reduced oxygen to the brain, and these are things that simply sitting in a spinning chair won’t help. Granted, I didn’t access the full length of the article, but it is not anything that interests me, or I may have.
“Ativan huh?”, you asked? South, what are you talking about, saying to me, “Yes, your convictions are quite clear”? I described how severe vertigo does me from time to time. I’d said if it interfered more than that, meaning, if I had to go out of my home, I would request something like ativan, which I’d used a few times, about twenty-five years ago. Do you still think I work for a drug company?
Why I’m even trying to communicate with you is beyond me, because there’s no breaking through to be had. I know it seems that all morgies get off on saying that anyone who doesn’t think like them believes that the world is still flat, and yada, yada, yada, but that’s only another perversion of reality. If your group is so against the wisdom of conventional medicine, why did you all harass the CDC? Has it been to just get DOP changed to the name of “morgellons syndrome” aka DODOP (Denial Of Delusional Parasitosis)? Will you treat it then? Because you all seem to despise the health care system that we all rely on to preserve, protect, and promote, better health for our nation and the rest of the world. You’re a minority, not making any sense. I suppose you would probably want to abolish the research being done for those of us with autoimmune diseases (which includes a large percentage of the group you’re a member of), by the National Institutes of Health’s Immune Tolerance Network. You seem to not want the advancement of any type of medical research and technology, other than to discover the causes of your own DOP, which already has several proven treatments, but you won’t take it. That is very selfish, whether any of you know it, or not.
I hope you’ve maneuvered your way around and read my other recent comments, South. If you feel like telling me what convictions of mine are quite clear to you, feel free.
dearest smiley cheeks
iam sorry to seem off topic
but since morgellons is not really
anything on its own –it lends to
discusing other aflictions
like that CFS article–thats a lot of tired people
like DOP –apparently there are a lot of imaginary parasites out there// what is a parasite ??
how big or small are they??
are there really that many meth users???
or my favorite lyme–Bb///
late stage chronic disease
ACA= acrodermitis chronica atropia
also caused by B azelli
unusual fibrosing of the skin
1860 by buckman/1902 by herxhiemer bacteria make all kinds of things
as i said before i am carrying an olive branch here–not picking fights
doctors are not scientists-they are business people tryig to make money like the rest of us
when doctors do try to be scientists they get in trouble
guessucated patients that read the internet do not help the confusion
by ignoring thier doctors
you see smiley-tc-marg
i am agreeing with you on several levels–maybe i used a poor selecton of words –abrupt ????
whatever i said about psych ad neuro symtoms—these symtoms are often times - many times - can be - indicaters that there is an underlying illness involved
even having a cold or flu can/will cause one to have psych/neuro
issues
i also agree that people who get stuck on certain forums and blogs
may misunderstand or become overly focused on particular topics
i keep beating the lyme drum because i know that there is a lot
of cunfusion with this disease and it is a psych/neuro disease in its later stages–
and yes people do have the right to stay sick–i believe ronald reagon granted them that privilage
i too am a recovered DOP–the
doctors stopped giving me ivermectin-albenzole-and scabie
cream after i tested pos for
lyme–but if i was DOP why where they treating me parisites???
i wasnt DOP but i was very ill
and i was very confused
i can see clearly now and i stay focused on my one disease with its many symtoms
thank you for having this space for me to preach in
peace-love-kindness-forever
eec
Southcity asked…
There’s plenty of scientists looking outside the box, on various topics. But that’s no place for a “citizen scientist” that doesn’t even understand the things inside the box. I fully understand that your head is cross threaded.
Tall Cotton
A parasite is any organism that is feasting on your body or possessions and not paying for its keep. There’s no limits to it’s size. It might be a spirochete, or it might be your next door neighbor.
TC
Looking at the Morgellons group as a whole, the evidence indicates that the Morgies are suffering from a wide variety of health problems. The list of symptoms is quite large, and by the people’s own testimonies, some have many, some only have a few, and no one has them all. There’s other diseases to account for every one of these symptoms, and no reason to believe that a new disease has arisen. The fibers mean absolutely nothing, except that the air is polluted. But many of them come from clothing. This isn’t just what I say. It’s what the evidence says.
Morgies have been diagnosed with a large variety of physical and mental health problems. The MRF has a list of some of them from their survey. As you know, most of them have also been diagnosed with Delusional Parasitosis. It’s evident that many of these diagnoses are accurate. A DOP diagnosis doesn’t always require tests, of any kind. The determination can be accurately made solely by listening to one’s beliefs, taking into account the strength of their convictions.
I’ve seen primary lesions, but there’s many things that can cause them. I’ve also seen linear excoriations that were caused by compulsive scratching. Many of the Morgies demonstrate an Obcessive/Compulsive disorder. Some have Bipolar Disorder. Some have Munchhausen Syndrome by Proxy. Some have Body Dismorphic Disease. The evidence indicates a lot of variety. Do people such as these always need psyche medications? No. It depends upon whether or not a person can straighten out their thinking without them.
It took a long time for me to come out of my Morgified state. First I had to balance my brain chemistry. I did this by abstaining from the street drugs that were causing the imbalance. Some people will have to add certain chemicals in order to find a balance. When I laid down the drugs my thinking began to straighten up. It didn’t happen instantly. But the fear left completely. I now believe in zero conspiracy theories regarding Morgellons,. with the exception of the conspiracies that some individuals and groups have to use the Morgies misfortune to accomplish their personal agendas.
There is no Morgellons Disease. That’s what the evidence says. That’s bad news for some people that are longing for its recognition. Some feel like they have to be right. Some believe that they will find someone at fault and hold them accountable. Some think that they will be vendicated and validated, and that their old friends will be begging for forgiveness. Some long for a quick cure. Others are happy right where they are at. They’re getting exactly what they think they need. Morgellons isn’t wrong. Morgellons is inanimate. It’s just an idea, a wrong idea. The error is in the “Belief in Morgellons”. And that belief is causing a world of harm.
Tall Cotton
EEC,
I didn’t see your blood tests, but it would be my guess that your doctor realized that something was drinking out of your cup. You probably had elevated whites, indicating infection of some sort, and your symptoms and/or suspicions led you to lyme. I know that there can be a late stage lyme, but Im not too convinced of Chronic Lyme. Your diagnosis may be accurate, but I definitely believe that many Lyme diagnoses are false positives.
Tall Cotton
Thank you for telling me what ACA stands for, eec. Demeanor often doesn’t translate well in the written word, but I desire to understand people. We’re in agreement, and I think we always have been, here, about there being numerous underlying causes for the development of DOP. Many of those causes are listed in the “morgellons disease case definition”. Plenty of others aren’t, but it all ties in, anyway, because so many things can cause a state of DOP to develop.
“Morgellons disease” united people, making them all think “they have the same symptoms”. No, they have the same delusions, and they itch, and the environmental and biological waste materials from their immune cells, epidermal flakes, and scabs, plus those damned fibers, all look the same. I’m positive that anyone with that distortion in their frame of mind has found it all too easy to believe, not only due to their underlying health situation(s), but due to how this entire mess was designed, and carried out, from the start.
I think the lyme experts that are associated with “morgellons disease” are pretending to not know any better. Sure, they can be delusional too, but I don’t feel it in my gut. I think they’ll always go on like this, though, because they can. I feel that all doctors who pretend to not know any better than to believe in “morgellons disease” are paving a road to their future with this, at the expense of some of society’s most ill people.
Getting over it is no small feat, eec. Bravo, bravo, BRAVO!!! I’m real sorry that you have lyme disease. I know you’re real smart about health matters, and the whole mind/body/spirit connection. I also include the soul, but not everyone does. So, does that mean you don’t still think that I’m Mary Sheppard?!! Hahaha. (It’s me, “Adapted”.)
How we doing then folks? Looks like lots of stuff to read and catch up on. I haven’t read all the posts or links as yet.
It is so nice to be a recovered DOP also. How refreshed I feel. The country side is wonderful medicine.
Happy New Year anyway everyone, lets hope we can wind this Morgellons phenomenon up sooner rather than later.
How disappointing, late 2007. I wish it wasn’t going to take so long, whatever Morgellons is really meant to be, we all need to know one way or the other, simple as that. I really want to know what are the chances of passing on this so called “delusional” disorder, which has very stricking physical and mental symptoms, to my unborn child. Yes I am, if you were wondering. The pill is certainly not “cement proof”.
So I guess you could call me “double trouble” now!!
Good article, thanks Michael.
Persistent scabies-like condition may not be all in people’s heads
Richard Fagerlund
Saturday, December 30, 2006
Printable Version
Email This Article
Ask The Bugman
Archive
More H&G Articles
Q: Can you please help me? I have been using lice and scabies treatments (over the counter and prescription) for three years. Something seems to be crawling within my scalp and skin. I see black things, large eggs in my hair and things that look like “sticks” that shoot out of my scalp and body. I also have what looks like pieces of gravel falling from my body and head.
Nothing seems to help. Medications are useless. I have given up going to the doctor. I have visited a specialist who refused to even look at my head. I am very clean. I do garden, and there are many ticks where I live. Is it possible I have a tick infestation?
I hope you believe me, that this is so odd.
A: This letter is representative of many I get on this subject. Twenty years ago, I would get three or four letters like this in a year. Five years ago, I was getting a dozen or so a month. Now I am getting them almost every day. Initially, the condition this person described was called delusory parasitosis or delusions of parasites. It was considered a mental problem, and it still is by a large portion of the medical profession. Indeed, I used to refer these folks to a dermatologist with the hope that the dermatologist would refer them to a psychologist.
I am not sure anymore. This condition is starting to reach epidemic proportions, and I can’t believe it is all mental. My theory, and it is only a theory, is that a small percentage of these cases are delusory parasitosis, but the rest may be the results of something else, possibly pollutants. Pesticides are not adequately tested, as the inert ingredients in all pesticides are considered trade secrets and are not even required to be listed, much less tested. It is a very real possibility, in my opinion, that some of these inert ingredients are causing some of the phenomena occurring in some of these people.
This condition now has a name, Morgellons disease. As I said, most people don’t take it seriously, but I do. I have offered to help by collecting samples of fibers, seeds, mites, etc. and curate them for further study. If you suffer from this condition, you can send me samples if you like. Go to my Web site (see below) and on the front page you will see instructions on sending bugs in the mail for identification. Follow the instructions.
I am going to set up a national database of all the samples we receive and try to get the federal Centers for Disease Control and Prevention to take a serious look at it. If this condition is caused by pollutants, we need to address it, possibly by insisting all ingredients in pesticides are tested and listed on the label. If this is a mental condition, then we have a major problem on our hands in this country, in my opinion.
Entomologist Fagerlund can be reached at fagerlun_at_unm.edu and has a Web site at http://www.askthebugman.com.
Page F - 6
Congradulation!!
TC
“Morgellons disease” won’t be over with, after the CDC has spoken, as long as quacks exist to fill a special need for these patients. Happy New Year, to you, Gillian. Of course, parental delusions are passed onto children. Please get into a discussion with your doctor, right away, about prescription medications and pregnancy.
Concerning “chronic” lyme, I used to see a lot of morgies on LB, who didn’t understand their test scores. They concluded that a high titer number meant they were full of infection, when that number indicates their natural immunity is doing its job.
eec said:
That’s funny. Hehe. I just so happen to believe we were all born with a free will. There are morgie people with their conspiracy theories, and there are others we don’t discuss. I know, fully well, that outsiders are not allowed to talk about it, but morgie people are all over the web saying certain things. So, here I go with one.
Many of them make posts about The Golden Rule, and warn people about karma, and some of them talk about their beliefs, in both, which are essentially the same. A lot of people, these, and others, refer to “morgellons disease” as a curse, and some will type out words of Christianity, faith, and prayer, and, sometimes (this really gets me) email prayer chain letters, as well as other chain letters. (Sorry folks, any that came to me, stopped dead.) They’ll claim that they want to be delivered from evil. So, well, with all that talk, some of them appear to seem to as though they may almost believe in a ruler of darkness and in a Supreme Authority.
When I’d first heard of “morgellons disease”, I was taken by surprise when I noticed ritualistic oil anointings, instructions on the strategical placement of sachets, (someone instructed cages of mice, even), antibiotic experimentation, herbals, herbal-cleanses, hand-held machines of different types, and, then, I read of “looking forward to a good herx”, or “just coming out of one”. I didn’t know what any of that was, and I’d really thought that some people were practicing a form of witchcraft, to be honest. Much more horrifying things came to light, in a very short time, but what people are embracing is beyond scary.
Yes, they have a right to do it, and to remain ill, but is it hurting them, or anybody else, in the process? I wonder how many really think “morgellons disease” is their punishment? A lot of them wonder, all the time, what they must have done, they say, to deserve it. It definitely isn’t their punishment, for anything, but if they think it is, maybe, in their minds, it truly is!!
DOP - A Dying Delusion
http://www.thenmo.org/DOP/MgD-dop0b_files/frame.htm
This link is definitely worth listening to.
Interesting. I had some bloods done last week, just to confirm the pregnancy. I have elevated white cells - 17, and an ESR of 31. The doc said both are WAY too high.
Lets hope my current treating doctors will NOW take a very close look at me, especially since I am carrying a baby. Mind you, all is very quiet, not heard from no one! You can ask for help until the cows come home, one day the penny might just drop with them.
My skin looks great, I have no lesions or sores, BUT my scalp whoa!! itchy and crawling sensations!
http://en.wikipedia.org/wiki/Saran_(plastic)
Did you know that the “matchbox” sign has been renamed by that Dermatologist Dr Seinfeld (sp?).
“Saran Wrap”.
Heck that’s progress, I feel better already…
Dear Mr. Tall Cotton and Ms. Smileykins:
Thank you for sharing (at the site linnked from Tall Cotton’s name in any post) in painstaking detail your separate experiences of many of the symptoms historically and routinely diagnosed as delusional parasitosis or, more recently, grouped under the umbrella of Morgellons disease.
I understand from your initial post describing your experiences with lifelong illnesses (Smileykins) and methamphetamine addiction (Tall Cotton), both of your replies to posts at your blog, and several of your posts at the Morgellons Watch site that you
- have satisfied yourselves that you both suffered from classic delusional parasitosis, due to at least those lifelong illnesses combined with dehydration (Smileykins) or drug addition (Tall Cotton)
- believe everyone else reporting similar symptoms must also be suffering from the same delusional parasitosis as you have suffered
Furthermore, you believe that
- there is, in fact, no such thing as Morgellons disease; instead, everyone blaming their symptoms on it are, just like you had been, suffering delusional parasitosis (sometimes in combination with other mental or physical diseases, which can alter the symptoms)
- the sooner those professing to suffer from Mogellons disease accept this fact, as you both have done, the sooner they will find relief, as you both have done, and the sooner our government will be freed from such time-consuming and costly tax-payer-paid investigations by the Centers for Disease Control
Based on everything I have discovered in my attempt to “get to the bottom of this,” I conclude that you are not only well intentioned but also, probably, correct in your conclusions. That is: I won’t be surprised that the Centers for Disease Control will confirm your conclusions.
Nevertheless, I think you fail to understand how best to counsel those who disagree with you. As a result, you inadvertently and unnecessarily evoke argumentative and negative commentary in response to your posts, when a measure of your success would be positive and affirmative, even “Eureka!”-type, posts.
May I offer a few suggestions?
1. Embrace, don’t rebuke
It appears to me that you have adopted the same kind of intransigence in furthering your point of view in your postings as those claiming to suffer from Morgellons disease have adopted in defending theirs. You provide a kind of tit for tat.
As you point out in several postings, intransigence is counterproductive for those professing their affliction with Morgellons disease: it prevents them from accepting the only cure you both, who have fully recovered from delusion parasitosis, know works.
But your own intransigence is also counterproductive because such an unwavering stance is challenging, alienating, and potentially damning to those you seek to educate, to enlighten, and to enfold with you in successfully dealing with these terrible symptoms.
In several of your postings, you appear impatient with, and intolerant of, those who have yet to make the conceptual breakthrough that you both have made: for example, when you quickly post your findings of non sequiturs in their comments (I can hear you imply, with the authority of beloved Rachel Ray, “How stupid is that?”), or when you belittle their narrow and fortified defenses. You come off as though you are throwing your hands up in despair at the stupidity of those around you. (Which, owing to your superior intelligence and understanding born from experience and recovery, may very well be the case. But, friends: no one cares about your superiority or your recovery. They care only about how you can help them. Please, don’t alienate them with your high-faluting condescension. Your quick-as-a-dart jab at their failure to be logical.)
If, indeed, you wish to help fellow sufferers who have not yet made the conceptual breakthrough you both have done, then you must
- take great pains to LISTEN to and ACCEPT them on their terms; after all, they are struggling just as hard as you both did during your episodes; indeed, they may have suffered longer and slower and, therefore, be more deliberate in their intransigence, having already encountered countless health-care deliverers who could not be bothered to listen — attentively (or at all) — to their complaints
- only then offer your own observations of your own experiences, and don’t pretend that you know all for everyone and no one else could possibly have an answer (in part, because, as noted below, you cannot know such a fact)
- leave it at that (please, don’t degrade your petitioners in any way; you can’t win by offending, however much their own offending comments may appear to justify your offense right back at them)
You may very well be justified to post your particular responses, but I’d nonetheless encourage you to adopt a less strident, less confrontational, less “I know I’m right!” stance.
When you feel attacked, resist the urge to attack back. Instead, reply with “Having been through experiences similar to yours, I know how convincing the evidence at hand can be. Indeed, I believed that [whatever impossible thing actually occurred]. While I and my husband/wife [soon?] were just as certain as you that we were victims of a strange new disease, we’ve come to accept that, while it’s hard to admit, we were suffering delusions. …”
Keep accepting, keep opening your arms to, keep welcoming all those who staunching disagree with you.
By doing so — instead of challenging them or contradicting them or pointing out the fallacies in their logic — you stand a better chance of helping more people who have suffered as you both have done.
Equally important, on the outside chance that someone somewhere may be experiencing something similar to what you have done, but their affliction, fundamentally, is different, you at least appear to be open to finding out about it, which supports healthy scientific inquiry. Even if you don’t believe in your heart of hearts that it’s true. As much as I respect you both, I must offer: Where would we be if no one ever questioned the Powers That Be? Why, therefore, are you not encouraging such questioning?
2. Specify, don’t elaborate.
For all your detailed descriptions, you fail to provide a succinct summary of what, exactly, your delusions comprised.
In other words, what was real and what was just a figment of your (and others’?) imagination(s)?
The clearer you can make your ultimate, final, summary understanding of all your rich descriptions of your experiences, the better off all your readers will be.
To me, a lay person, “delusions” are something imagined but not, in fact, real. Thus, when a person reporting symptoms of Morgellons disease can provide physical evidence of material erupted from his or her skin — or any other kind of physical evidence — I cannot categorize such physical evidence as a “delusion.” It is there; it exists! So it cannot be a “delusion.”
Nevertheless, such physical evidence, in fact, may be due to an unrelated or, at least, not causal event: for example, fibers from one’s bed sheets can be scratched into one’s skin lesions, which fact could explain their apparent emanation from such wounds.
Thus, when Tall Cotton describes the experience of his mother and sister witnessing material he claims came from his own body and “jumped a foot” — what, exactly, precisely, is the delusion? Did his mother and sister, presumably not compromised by any kind of drug addiction, witness this astonishing movement? If so, how can it be categorized as a delusion? Or, did Tall Cotton suffer the delusion that both the movement of this matter and that these witnesses were present (did he hallucinate both the event and those attending it)?
While I appreciate the extent and exactitude you both have demonstrated in your descriptions of your experiences, I feel that what is glaring lacking is a summary statement which categorizes all the experiences you describe as either 1) fact, proven by scientific analysis, or 2) fantasy (delusion). It would help us readers, enormously, for you to do so. (In fact, your failure to do so to this point raises its own questions.)
For those suffering what you suspect to be the same kind of delusions you both experienced, the more clarity you can provide in analyzing them — what, exactly, were the delusions you suffered? what exactly were not delusions? — the better able you will be to counsel fellow sufferers.
Mr. Tall Cotton and Ms. Smileykins (”Mr. & Mrs.” yet?), I applaud your efforts on behalf of all those whom you believe suffer from nothing more than — but every bit as much as — you both have done, delusional parasitosis. My comments are offered only in the belief that, if you sincerely wish to help others, while you may have inadvertently offended and alienated some, you can take steps to avoid doing so in the future. My best wishes for your happiness together and that you can find the way to help the growing number of people who claim to have suffered as you have done, but, as yet, believe their suffering owes to another cause. Which may prove to be the case. I encourage you both to stay open in your hearts and minds. At this point, who really knows (besides, of course, yourselves)?
With love and support for your efforts, yours faithfuly
DHB
Smileykins Said:
I hope that stands for me also. I am not a Morgie because I don’t know what a Morgie is. I did/do have the symptoms of Morgellons though, just like they are on the Morgellons Website. I still sprout fibers from unbroken skin.
We can’t even get recognition for Lyme Disease in Australia, we got no hope with Morgellons. Let alone getting a doctor to help.
I can not understand why it will take the CDC close to the end of 2007 to figure this out, and hundreds of thousands of dollars??
Michael - Is that comment documentated somewhere, did the CDC actually say that? AND you said to me Michael not to bother with the media, well come on mate. No fairness here, not on my part anyway, and what about all the other people in Aussie who claim to have the skin manifestation of Morgellons. Good god I am wanting this whole mess to stop, I do not want to see anyone go through what I have gone through already. I have no idea what is ahead of me, but I damn well know I can’t do it all on my own.
I have to witness the deterioration of my friend who I live with every single day, and I predicted this 2 years ago, and I’ve run around like a crazy woman ever since to try to get someone to damn well look and listen. I am most UNIMPRESSED with “professionals”.
“I really want to know what are the chances of passing on this so called “delusional” disorder, which has very stricking physical and mental symptoms, to my unborn child. Yes I am, if you were wondering.”
Gillian, indeed it is possible to pass on a delusional disorder, in about 50% of cases. It’s a situation called Folie-a-deux, meaning “folly of two.” Just like yawning, itching is also contagious.
Hello Sarah, you know what you can do with your “folly of two” don’t you!!
What about those fibers then Sarah, what do you say about that???
Well, let’s see, salary and additional costs for ten people (doctors and psychiatrists) for six months. $500,000 (at least)
Why six months? What do you think they are doing? They have to filter through thousands of cases, examine each one, see if there is anything significant in common, then find those people who seem to have the common factors, and follow up with them to see if they really do.
It’s complicated.
Life is complicated. Inappropriate simplification is a keystone of delusion.
Gillian, a team of ten doctors could probably work on JUST YOU for six months, at a cost of $500,000. DO you think they would cure you?
Eureka!!!!
DHB - I think I love you!! What a wonderful post, thank you.
DHB said: “To me, a lay person, “delusions” are something imagined but not, in fact, real. Thus, when a person reporting symptoms of Morgellons disease can provide physical evidence of material erupted from his or her skin — or any other kind of physical evidence — I cannot categorize such physical evidence as a “delusion.” It is there; it exists! So it cannot be a “delusion.”
_______________________________
Its important to distinguish between delusion and hallucination — to distinguish between misinterpreting reality and perceiving that which does not exist. That’s the difference between someone with Morgellons and someone with schizophrenia.
$500,000 wow!! makes my $600 a fortnight look rather miserable hey?
I am not expecting a cure. I would like someone to take a look at me though. You know remove some fibers from my body and see for themselves with their own eyes, that it is real. Show me some respect, compassion, and support wouldn’t go a stray either.
Anyway Michael you know it isn’t just about the fibers, the suffering, the pain, the whole 9 yards, it’s really horrible.
I have actually left my contact details with a medical facility in Melbourne who are hoping to carry out some research on Fibromyalgia. The add in the newspaper just said that the person must be over 18 years of age and has been diagnosed by a doctor with fibromyalgia and suffered with the condition for more than 3 months.
I think I fit the bill. I was diagnosed by a Rheumatologist 10 years ago.
Research is a funny thing though. My dad recently registered for the Alzheimers Disease Research. He got knocked back because he has suffered cancer in the past 3 years. He is really devastated you know. I can quite understand, his mum suffered from Alzheimers, before she died.
Research is a wonderful thing, and from the info. you just gave me Michael, it seems to come with a big price tag. But something is missing in all of this, the patient gets forgotten. Why will my doctor or any bloody doctor for that matter, NOT discuss the Morgellons issue with me, even DOP, but NOPE no one wants to talk about nothing. Well talking is therapeutic, and it sure helps sort out a few problems.
DHB, it’s going to take some time to read through your lengthy comment, and correct the different misinterpretations you’d stated about what you think you understood about Tall Cotton and me. That’s just in the beginning, before I’d even made it down to:
From the looks of things, you didn’t wait on a response from either of us.
Michael
Gillian has obvious skin, nerve or other dermal problems. What satisfaction do you obtain from informing her she does not? We humans have all kinds of parasites living on us. Some are nastier than others like human heartworms, etc, etc,.
DHB, I’d asked how fresh your introduction to “morgellons disease” was the other day. I don’t appreciate your advice. We have plenty of past dealings, and tried it all, before they began coming here and attacking us. If they want a shoulder to cry on, they know where to go. All I’ll do is correct the key things you misstated, before that.
1. That was a mere summary on our blog
2. I gave a history of my health and stated the reason why
3. Neither of us had “classic delusional parasitosis”– We didn’t burn things, move to different homes, lose relationships, run to doctors, beg for pity, need anyone to believe anything
4. You mentioned “lifelong illnesses” again — Reactions to cat scratches and eczema have been all that I suppose you can call lifelong, but they are both avoidable
5. No, dehydration and the aforementioned things didn’t bring on DOP
6. No, “everyone else reporting similar symptoms” is most definitely not “suffering from the same delusional parasitosis”
7. You said, that we both believe “the sooner those professing to suffer from Mogellons disease accept this fact, as you both have done, the sooner they will find relief, as you both have done” — NO. Not at all. They need to take antipsychotics. We didn’t. Most of them have what you called “classic” DOP. TC and I had secondary organic DOP. Many of theirs’ is stemming from a mental disorder they aren’t treating. Ninety-five percent of them have seen an average of 10-40 doctors and been diagnosed, repeatedly, with DOP.
8. “the sooner our government will be freed from such time-consuming and costly tax-payer-paid investigations by the Centers for Disease Control” — They forced them into it, so I want the use of money & effort to translate into strong action.
Dude, I never said anything of the sort. Gillian has some mental illness problems obviously, as she has admitted herself. This does not preclude her having physical problems, including skin problems. The physical and mental problems might be related, or they might not.
Of course humans can get parasites.
What’s this got to do with Morgellons?
I’m turning off moderation, since I don’t have time right now to keep checking this site every day. So freewheel for a while. We’ll see how it goes.
I might not be reading all the comments, so if you want a response, email me.
Now, I have read your extensive advice, DHB. Considering the circumstances behind it, I don’t mind too much of anything you said, except, I don’t like your telling us what we believe and how we believe. I repeat this, all of the time, but in case you don’t venture around enough to see it, DOP manifests depending on what the underlying cause is. There are three sub-categories. 1. Primary Psychotic Delusional Parasitosis: When DOP is the sole psychological disturbance, and patients otherwise behave normally, and reason in a rational manner; 2. Secondary Functional Delusional Parasitosis : Which is due to an underlying psychiatric condition, including, schizophrenia, paranoia, depression, anxiety disorders, obsessional states; 3. Secondary Organic Delusional Parasitosis: Which occurs due to an underlying physical illness, including, diabetes, hypothyroidism, cancer, cerebrovascular disease, neurological disorders, tuberculosis, vitamin B12 deficiency, thiamine, or niacin, deficiency, alcoholism/drug abuse, prescription side effects/interactions, liver disease, kidney disease.
Anyone who has secondary organic delusional parasitosis, because of an underlying physical cause, which was our case, will have it subside when that cause is treated. You don’t know, but we’ve helped all that we could, already, in the past. Their families can’t help them, their doctors can’t help them. We’re not trying to help talk anyone out of this, DHB. We didn’t even try to before, but apparently, those who had the capacity to understand, sought our guidance, themselves, and improved. That’s a minority in this set of patients, and all you need to do is look around a while. But, his is a debunking blog. Like it or leave it, there is no coddling coming from me anymore. Don’t compare TC & me to these people. We do accept them, ya dummy, they can’t accept themselves. They’re hung up as hell on prejudice notions about mental illness, and a whole lot of other things. No one can help them. Period. They cannot help themselves.
But listen, DHB, this is not just DOP patients. Yeah, in the beginning, I imagine it was. Every skin associated mental illness is covered now. View some of the You Tube videos of them in action. Sadly, there are all sorts that fall into this, because who doesn’t have fibers in and on their skin.
If you’re that interested in the topic, go on, and find out the hard way, by taking the advice you gave us. When I walked among them on lymebusters’ message board, I never uttered DOP, not once, after I looked up what it was, due to seeing it cropping up in so many of their comments. All I had known before then, was that I’d been sick enough to see things incorrectly, years before, and I’d figured out why, and had put it behind me. I’ve never tip-toed around so hard in my life trying to be nice to people. So go on, have a go at it. Join that cult. We gave up and defected. Do you know what it’s like to leave a cult?
Read someone saying that they’re setting themselves on fire, and see if you can applaud it. Drinking bleach isn’t a good thing, either, as well as bathing in it. Neither is talking animal de-wormers, and apply pesticides. Read how they neglect their children, fearing they’ll have them taken away if they seek medical attention for them. Go on, and pat them on the back and tell them that shows how much they love their kids. Applaud them spiking their children’s beverages with toxins, too. Cheer them for neglecting their pets to the point of death and blaming it on “morgellons disease”. Enjoy, DHB. I handled them with kid gloves, for six months. Go. Try. See. You can’t spread the love. We’ve been there, and it is impossible. They’ll tear you apart, stating their right to self-mutilate.
DHB, all the “morgellons” quacks say what Gillian cheered you for. Lint, fibers, and all that crap, has notoriously been what DOP patients retrieve from their skin, and always has been. Nobody has said that there isn’t THAT STUFF residing on them. When they go to a doctor with it, and say whatever it is that they say, about how they interpret it, that thought is way, way, way, way out there. So are yours.
“Hello Sarah, you know what you can do with your “folly of two” don’t you!!”
Gillian, if you didn’t want an answer, why did you ask?
“What about those fibers then Sarah, what do you say about that???”
Diverting the topic– stay on track. How is a delusion transmissable? Folie a deux.
Try and hold steady, Gillian, you’re bending like a willow, back and forth. Please be careful.
I overlooked this erroneous statement, but with such volume, gimme a break.
We DO NOT believe these people suffer from nothing more than — but every bit as much as we did. They’re mentally ill with delusions in the worst way. We’d both almost died, but it was better than what we read out of them on a daily basis. We never lost sight of things that mattered like they all do. Not on your life!!! How dare you instruct us and think we’re trying to reach them. They’re free as can be to stay in their traps.
One last thing:
Okay. If I were off in the head and a threat to myself and others, and didn’t have sense enough to know I was broadcasting it to the world, and petitioning my government to help me with it……..
There, is that specific, without elaborating any further towards my point???
Sarah said:
Sarah you got me all wrong, sorry you misinterpreted me. NO, I didn’t explain myself correctly.
I was being a bit sarcasitc when I said:
I meant that I would like the answer from the CDC, just like everyone I guess.
I was just messing around when I mentioned the fibers to you. Hey the fibers are real okay.
I am sorry Sarah but you do have more of an edge than myself on the topic of psychiatric illness, psychology etc. I was just trying to have some light hearted fun, because the suffering is not fun. I am sorry if I got your back up.
I think the word “delusional” alone gets my back up. Look you can call my fibers delusional if you like, but my delusions are very real to everyone, apart from the doctors, purely because they have not looked. Yes some look identitical to human hair, and many others don’t. I have no idea why these different fibers are in my body, and still appear from unbroken skin. I have no idea why the skin manifestation involves not just the surface of the skin, but my entire mucous membrane, and lymphatic system. A good physical examination by a doctor would surely confirm all of this.
Smileykins said:
I will try ok. I know I bend all over the place, I am really trying so damn hard.
I am careful, but what do I need to be careful of??? That is what is so confusing to me. The whole Morgies thing just seems so political, and secretative I find that really hard to deal with.
I feel as though everyone else knows exactly what is going on apart from me. Okay I read this blog and understand most of the stuff, but something is not right.
Thanks for the advice, I do hope you understand what I am saying. I am honest and always have been, I hate conflict and I don’t want to fight or argue with anyone here because it really isn’t healthy for my mind/body.
Dude said:
Dude I just wanted to let you know that Michaellllons has NEVER said I DO NOT have obvious skin, nerve or other dermal problems. He has always acknowledged my symptoms, and has always been very sympathetic.
Dude, I have never in my life, said to a doctor that I believed I had parasites in my body, or in my skin or on my skin. I do not suffer from an unshakeable belief that I think I have parasites.
If I really wanted to have a wild guess and diagnose myself I would say Lyme Disease. But these days I don’t want a diagnosis, I just want to be me and get well. Besides I have had a diagnosis of Rickettsia and mental illness, I think that’s enough!
It would be nice if one day I could perhaps help other people, the victims of Morgellons that is. I never want to see this happen to anyone else.
I’m with eec -
peace, love, kindness, forever - I like simple things in life that are easily attainable.
Bending like a willow is a good thing, as we go through discovering things, Gillian. I’ve told you I admire your courage, and I certainly mean that. You have a sense of self and you know that you have a unique place reserved for you, and you, alone, in the universe. When I’d said to be careful, I’d meant to try and hold steady to the present, out of concern that the influential pro-morgellons’s thoughts will transfer back into your psyche again. Forward, to the future.
Me too. That’s a very good sign, because only people living in fear of the deception of their own senses keep looking for answers in a realm of science fiction, that has nothing to do with reality. It will go on forever, for some people, until any number of compounding tragedies stops it. The alternative would be that they would survive it, let down their guard, as you have, and change.
Dear Smileykins,
I am so sorry that my comments offended you, as that was not my intention. Please forgive me.
I have misunderstood the purpose of your blog. I thought it was an attempt to reach those who claim to be suffering from Morgellons disease to share the insights that you and your husband-to-be have gleaned from your firsthand suffering and a great deal of research and investigation. The tone that permeates so many of your comments — indeed, in your reply to me — as I described in my earlier posting, appeared to me to be counterproductive to that goal. I now understand that it was never your goal to reach those sufferers; indeed, you tried and were not only rejected but, I gather, rather badly hurt.
I am convinced that you and your fiance are doing the best job you can to share your understandings and dispel myths and, from the bottom of my heart, I wish you both the very best — and a long and happy life together.
How long have you had “morgellons disease” DHB? You’re not another one of Aherahs’s personalities, by any chance, are you?
Haha, I’m sorry, I’m just laughing so hard, right now!!! I would like to what drives you so, DHB. You’ve ignored my asking, twice, at least, so far, how new the “morgellons disease” phenomenon is to you. That’s simple enough, isn’t it?
DHB, I feel you probably do deserve more attention over your problem with Tall Cotton and me.
You’d overlooked my having said:
When someone has bothered you to the extent that we, inadvertently, have, and you need to work your way through it, the easiest thing for you to do is to ask questions. We’re not as dense as you’d like to fool yourself into believing. You’ve been pretty deeply offended, so you’ve meant to try disrespecting us, by telling us what our minds, and our experiences, are, and were, and by asking if you could give us your advice. You went ahead, after asking, without allowing us to answer whether you could. Topping this off, you’d visited our blog, and left not a word. It’s possible, maybe, that you wouldn’t have misunderstood us, nearly as badly, if you’d read the comments there, too.
You don’t seem to understand that I would have named our blog anything other than “The LIE Of Morgellons”, if I’d wanted to attract morgie people to it. I just usually direct them there when they come at me a-lyin’ & a-bitchin’for no reason. If they have a reason, they won’t tell it. But, like you, they bring it all here. How you’ve gathered that we’d gotten our feelings injured from rejection is beyond me. Tell ya what….
I’ll start all over, just for you, and pretend like I’ve just heard of “morgellons disease” recently. These are a few things I want to know: I’d like to hear any justifiable reason why these patients obsess over, and vehemently defend, a similarly described, and named after, 17th century non-existent disease, rather than treating what they’ve been diagnosed with. I’d like hearing any views on why they all fail to acknowledge every ramification that stems from that refusal to treat, as well. I’m most curious of all, what the real anticipated hope of the morgellons’ movement is. I’d appreciate having these things defined to me, by victims of the proclaimed malady, to keep me from incorrectly assuming anything.
DHB, I’m not obligated to play in this deadly game of deception. They aren’t fooling anyone but themselves. These sick people are broadcasting themselves all over the place, but they can’t tell others anything, directly, other than to dare us to hug them, take a bath with them, sleep in their beds, or bet that we’re afraid to do any of those said things. They shut themselves off from reality and want no part of it. They drill us, here, with questions, threaten us, lie about us, and demand credentials, giving nothing of value to us in exchange. (Except for Gillian. She’s all right.) “If” someone told you that TC and I exited their message boards due to their hurting our feelings, that is purely someone showing more of this phenomenon to you. It’s a lie.
Gillian can tell you. She came along here, programmed, herself, carrying out direct orders from Mary Leitao. Read here, and you’ll see it, if you’re not a blast from the past, and already know. I’m sorry, if you aren’t, but there’s something up. If not, and this illness is a thing you want to delve into, and be part of, then by all means, enjoy it, I suppose, if that is how you’re so inclined. If not, you’ll tire of it, throw your hands up, and leave them to be as they wish. Many of them are doing unthinkable things, and breaking laws, neglecting innocent ones that they’re in charge of. People that selfish, are as bad as off as it gets. I don’t like others falling into the pit, but it appears to seem very, very attractive to some people.
Just don’t you worry yourself about TC and me. I’m not feeling your histrionic well wishes, so pass them on to someone else who might need them from you. I’m up front with saying I don’t know how to deal with morgie people, and I don’t usually baby them here. They enjoying saying that they aren’t in need of mental help, so I often deal with them just like I would any disrespectful adult, when they’re outside of their forums. I think that’s as good as I can be towards them. So, take your tit, now, and stick it in your tat, DHB. Only because you’d asked, I’ll work on forgiving you. I sometimes make comments, impulsively, and ask forgiveness afterwards. You’ve put an awful lot of effort into yours, for some reason, but maybe you feel better, by now. I know I always do when good communication results from misunderstandings.
Smileykins said:
Thank you so much. Your comment is the nicest thing I have heard from anyone, in a very long time.
After giving your comment some thought later on, I was hoping the above is what you meant. I agree 100%, my “wounds” are still fresh, so to speak. I still have to concentrate at times, especially if I am tired or emotional, but I am managing to do it and get through. I bought myself a really good book called “The Quiet” written by Paul Wilson. I am only a quarter into the book, but I am really happy that I bought it.
I like that comment!
Dangerous territory that little ol pit ya know.
DHB when I first heard of Morgellons just a little over 2 years ago my inner voice said the following to me;
“Morgellons Disease?? I think it could end up being a name I wish I had never heard of.”
My advice to you DHB would be; if you have just learnt of Morgellons, please do yourself a BIG favour, leave the investigational work to the CDC Taskforce.
I would love to give you some more advice, but it is still early days for me, and I don’t like to think about the past too much just at the present.
Morgellons is dangerous territory, please try not to get involved. Leave it to the CDC, please.
Good luck.
P.S. I do have a little bit of advice DHB
Smileykins said: