Three interesting articles on Morgellons in the Journal of the American Academy of Dermatology this month, the first two are free:
Morgellons disease: A rapport-enhancing term for delusions of parasitosis, Murase, Wu and Koo.
Morgellons Disease? Waddell and Burke
And one you’d have to pay for:
The Challenge of Morgellons disease, Koblenzer
Here’s an excerpt of the Koblenzer article:
Today, the informed dermatologist may be anywhere from doctor number five to number ten or more in this patient’s search for relief, and the patient will, in the interim, have raised both heaven and hell in a frantic attempt to solve the problem that has literally taken over his or her life. Today, the internet further complicates an already difficult situation, as we see in the two letters in this Journal, as our patients share every facet of their condition, every theory as to cause, and every attempt at relief, however far-fetched, with their fellow sufferers.
This sharing, and a tremendous amount of suffering, have given rise to the formation of “The Morgellons Research Foundation,” an organization devoted to “researching an emerging infectious disease,” with a medical board that boasts five MDs and an RN. Interestingly, none are dermatologists. An internet search for “bugs in the skin” will bring one to the Foundation’s Web site, and as Murase et al point out, the information therein may be very misleading to someone who suffers from delusions of parasitosis. One reads of cellulose fibers, fibers with “autofluorescence,” fuzz balls, specks, granules, strongyloides stercoralis, cryptococcus neoformans, “alternative cellular energy pigments,” and various types of bacteria for which potent antibiotics are prescribed, in the ever broadening spectrum of possible “pathogens.” In no case does one read of positive confirmatory tests, though many tests are undertaken. As Murase et al note, one also reads of numerous associated medical and psychiatric disorders that are attributed to, rather than co-existent with, or causative of the distressing symptoms. Frustration is extreme and suicidality is not unknown.
Clearly, as more and more of our patients discover this site, there will be an ever greater waste of valuable time and resources on fruitless research into fibers, fluffs, irrelevant bacteria, and innocuous worms and insects. It behooves us, therefore, as dermatologists, not only to be aware of this phenomenon, but also each to develop an effective way to work with these patients, and so enable the patients to be able to accept one of the medications that we know to be effective. This is a challenge indeed—so often the patient, feeling “brushed off” or not understood, simply does not follow through either with medication or with psychiatric referral.
If one is to succeed in helping these patients, it is important that one acknowledge to the patient that what the patient describes is exactly what that patient is experiencing. One can then empathize, as did Murase et al, with the patient’s pain and discomfort, their anger and frustration with dismissive doctors, and the devastating changes wrought by the condition in the patient’s life, and so develop a therapeutic relationship. With regard to causation, Morgellons disease may be an acceptable appellation, but it may also be that the touted “mysteries” of this disease only prove stimulus for further research by the patient. So, perhaps without going too far into the difference between a disease with a definite cause and a syndrome that may have different ones, it may be reasonable for us to refer to the symptom complex in question as “Morgellans syndrome” rather than disease
Of note: all these doctors are saying they are considering using the term “Morgellons” to refer to conditions involving DOP when talking to people who suffer from DOP and who also think they have Morgellons. They are doing this since it eases communication with the patient.
Hello Everybody… I read the articles from the top two links and the posted portion from the third link. I found the articles interesting. This may help develop a new nickname for DOP, called Morgellons. I think this is really gonna make Mary Leitao quite angry. That is, of course, if she even understands what is happening. I find that very funny!! In my opinion she is hurting a lot of vulnerable people. I also believe that forums of the Morgellons Believers are doing great harm. But I liked the reference to Shakespeare’s old adage about the rose by any other name smelling as sweet, in this case sweeter.
Take a look at the way New Morgellons Order changed their layout. It’s the same template as Morgellons Watch. Also, they’ve posted some quotes from dermatologists. I’m sure they don’t realize that they are hindering their own cause, but I appreciate their help.
Cindy Casey posted Michael’s links, above, onto a new lymebusters thread. At least that’s what my friend told me. I don’t get to go there cause they think I’m an evil boll weevil. I don’t GAF. Anyway, he said that Cindy didn’t even change the words Michael put between the links. Thanks Cindy, for helping us get the truth out there. Wow, I like these new partnerships. You need to put yourself on that new Morgie of Month page.
Oh my oh my oh my. What does this mean? “Morgellons” is now for rapport-building.
Of course, someone on another forum will probably post that “rapport” is not a word for mutual relationship and understanding, but a word for “the government is trying to get me.”
Oh, my head. Such an almost parallel universe type of thing this whole mess is for so many people.
And, although I can’t really understand it, perhaps this excerpt from a post that someone had made on LB, last year, which I’d mentioned under the topic entitled, “Physical and/or Mental”, really has been what some morgie people have been striving for.
Judging by the way they talk at Lymebusters, they seem to think that their doctors are going to start putting Morgellons as their written diagnosis. In my opinion, that isn’t going to happen. They may refer to it as Morgellons, when talking to the patient, and let the patient call it that, but the written diagnosis is still, in my opinion, going to be DOP. I wish the cdc would rewrite the case definition and let the term, Morgellons, officially designate a delusional disorder. That probably won’t happen either, because some are suffering from DOP, some are suffering from Schizophrenia and DOP, and some are suffering from various other combinations of mental illness. I’m not saying that they all need to be put on psychotic medications, but they all need to deprogram themselves and quit thinking that they are teaching anyone about Morgellons. They aren’t teaching anyone but each other, and most of what they are learning is totally wrong. Way wrong!!
What a bunch of baloney this is!! Someone is even advising other morgie people to take the below article in with them when they see a doctor. If they do, I hope the doctors go easy on them and that someone along the way has a tiny amount of time to try explaining. Of course, even if that ‘could be’ a possibility, as hard pressed for time as all doctors are, in my strong opinion, I’m pretty sure they know it wouldn’t make any difference. I suppose such people commonly take letters & articles on “morgellons disease” in with them to doctor appointments anyway, but my gosh. And now, thanks to Staninger’s report, that was so obviously designed to confuse, look what this person says about the additive that the FDA has approved for use on lunch meat. Hopefully this important safeguard will help protect some pregnant women and small childrens’ lives from being lost due to listeriosis, since they’re so susceptible to it. More than a couple of thousand of them get sick every-single-year from it, and about one fourth of them lose their lives!! This is a good thing if it can reduce listeria on those particular lunch meats that it thrives on.
Just have a look at this…
No, children were at risk of getting listeriosis from that bologna, prior to this move by the FDA. Bacteriophages only target bacteria, so anyone that wants to go ahead and serve these lunch meats, that will be well-labeled, to their children, once they hit the grocery stores, could risk their having some minor digestive disturbances like we’re all accustomed to, from antibiotics, in possibly upsetting the balance of good bacteria in their intestinal tract. That ain’t nothin’. If anyone is freaked out, then, steer clear of the labeled products. But, little kids were more endangered from served out of the package bologna before this important move.
So sorry. This was an even worse quote from that article…
The trust such people have in the ones leading them further astray, and their suspicions, concerning so very many things, has to be a terrible way to live, aside from whatever they have going on physically. They seem to dislike, and fear, the age we now live in. Maybe they would prefer going back in time? Heck if I know, but we haven’t any choice in the matter. Look at the strides modern medicine has made, just since many of our grandparents and parents were born, and how life expectancy has increased from about 50, in the early 1900s, to around 80 years, now. I don’t know. It really bothers me that people are having this “morgellons” issue. I suppose I need to just harden my heart and forget about it.
That is perhaps the stupidest article I have ever read.
I was going to quote the most stupid part of it, but the entire article is just so insanely stupid that I could not pick a paragraph. So I’ll quote the sensible part:
Whoops, the whole article was based upon a misunderstanding! Yet the author still lets the article stand, suggesting the FDA and CDC have failed us by not banning the use of bacteriophages because some fringe scientist thinks they cause the entirely theoretical Morgellons (which predates them by several years) via some mechanism they don’t even use.
Michael – You wrote the word “stupid” 3 times in your above post, don’t you think you should delete it!!!lol Just tryin to throw a funny that’s all!!
…..Now that comment is very funny – as if Dr Pasternack is going say “yes, yes, – ya got us, we did it, whoops sorry world”!!!
The other “D” word in todays society – DENIAL! deny,deny,deny and then of course the other “D” word DELUSION – the delusion of society!
Don’t get me wrong “Intralytix” could be completely innocent, but someone, somewhere has made a big bugger up.
We were once told that the 911 attack was organised and carried out by Osma Bin Laden and his cronies.
How on earth could this be possible??? Bin Laden seems to spend most of his time squatting in sand dunes, wearing his flowing frocks and sandles whilst smiling for the media ::)
I forgot to smile – sorry 🙂
Both Staninger and Karjoo are simply trying to make money by selling unproven “far-infrared” saunas and heaters. Their web site is full of woolly pseudoscientific nonsense:
They say “far infrared” is in the range 4-16 µm, when the normal scientific use of “far infrared” is for the range 15-1000µm. The 4-16µm range is more normally referred to as “heat”, that’s radiant heat, things that are warm and radiate heat. Real “far infrared” is more like microwaves.
So they are selling quackery, and trying to drum up business.
It’s so wrong, and so very easy to sell that quackery. These particular patients have themselves so highly publicized, that they’re just like little sitting ducks for these types to mess with. But they just eat it up though, and the voice of reason is “their enemy”, you know.
From Dewey’s article:
It’s my understanding that the child was diagnosed with eczema, and that the Mother, Mary Leitao, was told that she has Munchhausen Syndrome by proxy. The doctor reportedly recommended that she get a full mental evaluation.
Well, poor David Baca has made a very commendable gesture, a “vow”, it states, due to his car chief’s sister-in-law believing that she has “morgellons disease”. It is nice, and I’m sure he can afford it, however, of course, the move was driven by his heart, and not his head, as reflected in the article.
I would be very embarrassed, and humiliated, for not learning ahead of time, what the facts of the matter are. This is nice, though.
(Me, and my typos, hehe.)
Oh, anyway, hello there, Al. Hope you either woke up, or went back to sleep. And, Norman, thanks for providing that informative link to the Superbug brought back by Iraq war casualties. TC and I discussed it, months ago, while we were keeping up with reading about MRSA infections. That ain’t what people have that they are calling “morgellons disease”!! There are those who believe that they have “morgellons disease”, who have MRSA infections, because I’ve read their on line comments, saying so. Really, what people HAVE is a mixed-bag, of any number of things, but they all invariably have ONE particular thing in common. I don’t appreciate this “nay-sayer” labeling, either, because those of us labeled as such KNOW people are in a bad state of health.
post 13 dears, i’m arrogant enough to require your thoughts?
Now, is it bologna, balony, or bullshit?
mebbe we should call it mendellsons curse…
🙂 gotta love the democratic landslide…
start quivering rednecks…..
the cavalry has arrived
Al, if you read from post 7 onwards, you’ll see your link from post 13 has already been discussed.
‘Ello, Albert. You’d expressed a yawn, earlier, but excuse me, for jokingly saying to either wake up or go back to sleep. There is no simple “it”, but “it” needs to be called what “it” is, and accepted, and treated, for every individual who has whatever condition(s) they have. I’m sorry, but since the inception of “morgellons disease”, it’s been very harmful in causing certain people to think that they share a single and unique condition. We’ve been saying that, in as many ways as it can be said, all along. If it can click with anyone, it will, and if it can’t, it won’t. We realize it seems horrifically complicated and mysterious to people who think they have it, and, considering the circumstances, even all the distrust is understandable.
P.S. Under the topic, “Factitious Disorders”, notice the postscript in comment #311, Al.
Now if we could just get rid of our treasonous President, we could really celebrate!!
um are you talking to me? or albert?
u ever read atlas shrugged?
who is ayn rand?
I also object, most strenously to the use of the word “it”. Such alliterations surely are designed to sytmie, rather tham cultivate debate.
Oh, now. Okay, so excuse me again, “Al”. I go along with quite a variety of names and titles from you. I don’t believe that it’s healthy for patients to be looking off into so many various directions for the answers to their dilemmas. Especially when they only see key words and can’t digest what they’re reading. It’s scary sounding stuff, to many people, and just not at all relevant. Since there is no “it”, but so many patients have been deceived by their own senses, and therefore, understandably, ignored the numerous opinions and advice of their physicians….man, I am so bad with run-on sentences, ain’t I? Hahahaha. Well, you get my drift, though, eh? We all rely on our senses to guide us. So, some people have all been experiencing very similar events, and “morgellons disease” seemed to fit the bill. It was designed to. Only people going through it, or others who “want to believe”, for whatever their reasons may be, think that there is such a thing. Now, nobody here is saying that there are not tangible things that people are seeing, nor are we implying that they are not in miserable states of existence due to what they’re going through. We understand that, and we understand that there are things which seem similar, and connected, to other patients. It is the misinterpretation of what such patients are seeing, and the combination of their other health matters, that has them in such vulnerable states of confusion. The inability to accept certain conditions, that often befall us, requires seeking a professional to discuss the matter with. I was once referred to a mental health care specialist, over depression stemming from my physical disablement. It didn’t help me, though, and after many years, I realized it is an ongoing process of acceptance. People really should try letting their guard down, just a little bit, even, and open their minds, just a tad, if they can. We all only have so much time on this earth, and it shouldn’t be spent being miserable. If we fix our bodies, our minds follow. If we fix our minds, our bodies follow. Is there anything debatable there? This “morgellons” issue is not a matter of “taking sides”, Al.
I’ve got some errands to run, but can you debate me this, Al, or anyone? Are “morgellons” patients not saying that they are powerless over themselves and that they desire an outside source to solve their problems for them? If so, does it stand to reason that they increase their vulnerability, rather than lessen it?
well, babe, when i took it to the doctor it said”your lesions are looking better than ever” so we then decided to test “it” for, wait for it, the doctor believes me…..morgellons.
i got fibres comin out my nose, my eyes, my ears, it sux, it hurts, it is scary…..
Al. I’m really happy that the doctor believes you, and that you finally heard something other than, “NEXT!!!” I don’t know your full situation, or anyone else’s, but I’d once had fibers (and more) coming from everywhere too….my nose, eyes (most miserable), mouth, and ears, broken skin, unbroken skin….it sucked, and it hurt. Still, somehow, to me, it wasn’t what I’d call scary. I know it is to a lot of people, and I hate that it is. Naturally, given the fact that people have been led to think this is something that they share in common, through “morgellons disease”, that would make it seem even scarier. I know it all seems to add up, for many.
I was blessed to be able to apply a fraction of reasoning when I’d had such a time of it. I was fortunate, though, to have not paid any attention to an usual message board I vaguely recall coming across back then. I don’t know which one it was, and although “morgellons disease” may have even been mentioned (and it may have very well been), I didn’t identify with the comments I glanced at there. Truthfully, I had thought I had stumbled upon some type of an on line game in progress, or something really weird, so I didn’t stick around.
Of course, I knew things were not normal, and I’d thought that I had somehow gotten infected with a new disease of some sort. As serious as it was for me, though, I knew, that in two months time, if it were something contagious, that other people near me, as well as in my local region, would have to be getting it too. I knew it was me, only, and that something in my body had to be terribly out of balance. I was on a mission to find out what it was, and how it happened. It was a quest I could not stop, while during the entire time, all these bizarre things were going on. I was in the worst misery I was ever in, and it ravaged me as I looked on the internet for answers, day and night. I googled human parasites, fungus, bacteria, and so many health conditions. Just like other people, way back then, on my own.
I wasted away in the process, until I was almost gone from here. It was beating me right down to the finish line, and I was not going to let it take me over that mark. That scared me, then, and I was scared enough to fight and see what happened. What happened was that I got my health back, and it wasn’t easy. Yet, compared to many, it must have been. (Oh, I got my heat pump repaired too.) People are in serious trouble with this situation, and how the spread of “morgellons disease” has influenced them further.
I hope you are improving, and that your doctor and you can kick this in “its” butt, in royal fashion, babe.
Correction: Excuse me, I’d meant to say that the message board I’d found four years ago was “unusual”.
Smileykins says, I wasted away in the process, until I was almost gone from here. It was beating me right down to the finish line, and I was not going to let it take me over that mark.
June says, What an uplifting account, Smileykins. You travelled down a really rough road, didn’t you? It’s stories like yours that give hope and encouragement to countless people who suffer daily from debilitating illness and/or chronic disese
Thank you. Two months of having DOP manifest itself in me, from an underlying organic cause, was a very tiny, but profound, chapter in my life, June. A delusional state of mind is utter reality to the person in possession of it, regardless of what causes it, but, even so, I could still problem solve and rationalize to quite a very good extent. Many people who believe in “morgellons disease” can’t do that, due to some of the more complicated reasons that cause it to come about, as well as the reinforcement that it’s something other than what it is.
Smiley kins. you actually admitted on here that you had DOP!??
see you are fucked up in the head. i have morgellons and i am sane as they come. dumb ass
Excuse me, Chris, what do you see so terrible, and so wrong, with what you’re referring to as an admission, on here, that I had DOP one time? I hadn’t even heard of DOP, until hearing about “morgellons disease”, three years after that experience. You don’t know what DOP is, obviously. I sure hope you’re not lying to yourself, like so many others who turned me onto it, through this “morgellons disease” situation.
I think, unless, you understand DOP, plus all there is to know about why Mary Leitao concocted “morgellons disease”, back in 2002, that you should have someone you trust (who understands things well), read everything on this blog, Morgellons Watch.
You need to have someone translate this, too, if you’re interested. This is a summary of TC’s and my experiences.
Chris, you have your whole life ahead of you, and nobody wants you to throw it all away on this mess.