The following Q&A is aimed at addressing some of the misconceptions regarding Morgellons that have been propagated in various media articles.
(Note: This will be a work in progress – please email me suggestions and corrections at Morgellonswatch@gmail.com)
Q) What is Morgellons Disease?
A) Morgellons is an proposed disease, unrecognized by doctors, promoted and self-diagnosed via the internet. People claiming to have Morgellons have widely differing symptoms, the most common of which is they feel they have been misdiagnosed by their doctors. Supporters claim the most notable feature is fibers emerging from the skin, yet everyone has fibers on their skin.
Q) Is Morgellons a real disease?
A) Not by conventional medical standards. The offered case definition is very long, and very vague. It fits a very large number of existing diseases, and simply suggest co-morbidity of a variety of conditions such as eczema, chronic fatigue and anxiety disorders. The “evidence” for Morgellons is entirely anecdotal.
Q) What is the History of Morgellons?
A) Morgellons was first proposed in 2002 by Mary Leitao, to explain her 3-year old son’s eczema. Leitao looked at her son’s skin under a microscope and found fibers on it, and decided she had discovered a new disease characterized by fibers emerging from lesions, and started a foundation. Her son’s eczema cleared up naturally. His symptoms did not include those of the more recent claims of Morgellons. The list of symptoms has rapidly expanded as more people registered. Leitao encouraged people to seek out fibers in their lesions. The idea of Morgellons was spread over the internet.
Q) Are the most cases in California, Texas and Florida?
A) Yes, because that’s where the most people are, those states have the highest populations. Morgellons is a self-diagnosed disease. People “register” over the internet by filling out a simple form on Morgellons.org.
Q) Who is Ginger Savely?
A) Ginger Savely is a nurse practitioner who was unable to find a doctor in Texas to supervise her practice, due to her unorthodox and possibly dangerous treatment of Lyme disease patients. She gives similar treatments to self-diagnosed Morgellons suffers. She is a member of the Morgellons Research Foundation, and co-authored an article on it with Leitao. She is active in the Media campaign, and is seeking new patients. She makes a living from selling her unorthodox treatments.
Q) Have researchers determined the fibers are not environmental?
A) No. Randy Wymore is the director of Research at Leitao’s MRF. He works on a volunteer basis using the facilities of OSU. He has been examining fibers sent (often anonymously) to him. Many fibers he would discard as environmental, but there were a few he could not identify. Not being able to identify a fiber is not the same as proving it is not environmental. Fibers go unidentified all the time in forensic cases. To prove it was not environmental, you would need to prove it was generated inside the body. This has not been done.
Q) Do most doctors dismiss Morgellons Sufferers as having Delusions of Parasitosis?
A) No. There are a wide range of things going on here. Doctors understand that people might mistakenly think fibers found on their skin are connected to their disease, without the patient being delusional. If a patient has lesions or itching, then there are a vast range of possible causes for this, and doctors would attempt to diagnose and treat them. Delusions would be diagnosed if the patient claims to see things that are not there. There are some people who are clearly delusional and who are highly resistant to any hint of a psychiatric diagnosis. These people are likely to latch onto anything they feel explains their symptoms.
Q) Do people “sweat black tar“?
A) No. Again this is based on one statement, and was then picked up by the media. This time Savely was quoted as saying: “These people will have like beads of sweat but it’s black and tarry“. She was probably referring to what other people call “black specks” (dried blood, necrotic tissue, or blackheads). The imagery was just to vivid for the press to pass up.
Q) Does Morgellons cause muscle twitching?
A) No. It’s not a real disease, but the list of supposed symptoms was extended to include “uncontrollable muscle twitching” after a report (May 2006) that former Oakland A’s pitcher Billy Koch has Morgellons. The extensive Morgellons Research Foundation’s “Case Definition“, written (Feb 14 2006) a few months before the Koch report, does not mention muscle twitching even as a secondary symptom.
Q) Is it odd that some fiber analysis shows some fibers to be made of cellulose, a molecule generally found in plants?
A) No, far from it. Cellulose is what the majority of environmental fibers are made from. Paper, tissues, cotton, q-tips, linen, ramie, rayon, tencel and lyocell are all made from nearly pure cellulose.
Q) Is it true that “Dermatologists claimed the filaments were all delusions, although none had studied them“?
A) No. Dermatologists often look at samples that patients bring in, in order to eliminate the possibility of parasitic infestation such as follicle mites, scabies or lice. Filaments themselves are not delusions, they are physical objects.
Q) Where do the Morgellons sufferers on TV come from, if this is not real?
A) From the internet. The TV report have been orchestrated by Ken Cowles, the MRF director of media relations. He seeks out people in the local area who have registered with the MRF, and sets up interviews, and supplies photographs and video. The people featured are often active in promoting Morgellons on internet message boards. For example, the Alabama WKRG report featured the family of Leigh Ann Cofield, very active on the Lymebusters forum
An excellent summary of the facts as known to date. I sincerely hope that as many affected people as possible find this blog and get a dose of reality. Michael statements are very carefully researched and presented in a truthful manner. I hope also that any persons in the medical and public health professions (and the news media) who might be confused or misinformed about Morgellons will discover this blog. I urge people who access this blog and care about the sufferers and shysters out there to forward a link to as many places as possible. The truth shall overcome.
I agree that Morgellons isn’t a real disease, and that it is self-diagnosed via the internet. I also believe that some of its mental aspects are spread in a similar manner. I find it disturbing that the believers think they are doing a great service for mankind, but the opposite is true. They don’t just attract like minded people to their message boards. They reinforce each other’s delusions, and the delusions of the new members they recruit. And the sick get sicker.
The real shame lies in the fact that some of these individuals would eventually follow their doctor’s advice, if it were not for this negative reinforcement. They’re being convinced that they have Morgellons and taught not to trust their doctors. We have Mary Leitao and her so-called research foundation to thank for spreading this madness. It’s obvious that she had to really scrape the bottom of the barrel to come up with a team of players that would help to fulfill her evil agenda.
You can’t keep a “Morgie” honest, but you’re doing a dang good job of exposing their lies! I guess I should be a little more sensitive and considerate of their feelings. Okay, I’ll try. Here it is. “A ‘Morgie’ wouldn’t know the truth if it jumped from a bush and bit ’em on the ass!
Michael, whomever you are, you have my full gratitude for being such blessedly wonderful person.
I know that you know what a blessing you are, too.
It is such a outright crime that this farfetched situation has been allowed to occur. As we all know, there has always been a population of people with “misunderstandings”. Their combined health and emotional disorders were always present, of course, meaning, before Mary Leitao entered the picture and devised her sick scheme.
I really don’t think too many of them have ever cared looking into her background, as if that would even enter into their minds…as if that would even dare to sway them off course. It’s apparent how hellbent they all are, unable to even tell a friend from a foe.
She’d started out the same way as them, not with herself, but with her obsessive delusions over her small son. Just look at what the irrational humiliation she’d felt from her little boy’s doctors hath wrought. This is so unbelievable.
To regain her lost dignity, she’s tried giving the world a lie that she invented. She’s given all these pitiful people that lie, a lie that’s assisted in keeping them from seeking the proper pathway, having poisoned their minds, literally, towards their own destruction and demise, holding onto her lie, as though it is their one and only true friend.
Thank you, so much, for shedding the truth and shining the light. I can’t say I can envision the way this will all turn out in the end, but it isn’t going to be pretty, I’m sure.
Just a “for the record” …
It’s been widely reported over the last several days that Billy Koch and his entire family all have “Morgellons” and that, in fact, is why he left baseball.
Oddly enough, even though Koch supposedly became symptomatic in 2002, the General Manager of the Chicago White Sox, the club Koch played for in 2003 and 2004, says he knew nothing about it!
“Caring for Koch
General manager Ken Williams said he was unaware that former closer Billy Koch, his wife Brandi and three children were suffering from Morgellons disease, a mysterious ailment in which black specks come off skin and victims suffer uncontrollable muscle twitching.
“He really is a good guy, and I feel for him and his family,” Williams said of Koch, 31, who pitched for the Sox in 2003 and 2004 but has been out of baseball since last season.
According to Oakland television station KTVU-2, Koch felt symptoms while pitching for the Athletics in 2002.”
I think I’d like to hear from the man himself.
Thanks for sharing that. People are nothing more than merely human, no matter who they are, or what title they wear.
How does the baseball player, his wife and kids get this all at once?
Did they all go into “parasitical dilusions” all at once. Maybe they need “physcotropic drugs” all at the same time like you and the Doctor say. Yeah lets keep the family all fucked up on drugs. More and more drugs.
Makes for a dysfunctional family dont it when everyone is in a state dillusional bliss.
Piss poor answer.
Your an idiot.
Well, for a start, they don’t have the same thing, which is quite apparent from watching the video. One kid just has an itchy nose.
It could be Folie à deux
And please try to be polite.
Or Folie a Famille
“The occurrence of pruritic skin lesions simultaneously in all members of a family is common. But the absence of any specific dermatological disorder and history of failure with dermatological treatments should arouse the suspicion of some rare psychogenic disorder, as we experienced with this family.”
Which does not mean there is nothing physically wrong with Koch. But he might be seeking justification for his symptoms. He was under a lot of pressure to continue his stellar performance.
Professional athletes are seen my the club physician on a VERY regular basis. The doctors are retained by the club and thus report to the owner and managers. So it just seem to me that if a bizarre new disease had forced a promising young player out of baseball, we’d have heard about it in about, oh, 2004?
Has *anyone* seen or heard Billy Koch comment on this?
Anonymous, before we start speculating on how “the baseball player, his wife and kids [got] this all at once” I’d like some verification they’ve got it at all.
One thing I have noticed, on all the blogs and fora, is that no one who claims to have Morgellons can correctly spell “delusional”.
I’m going to turn off anonymous posting – it’s getting hard to remember which anon is which, as they don’t sign their posts.
Getting an account to post comments is easy, and equally anonymous. It just lets the conversations read a little easier.
How does the baseball player, his wife and kids get this all at once?
Answer: To get to the other side?
Oh no, wait…that was why the morgie crossed the road.
I dunno, I give up…but after you tell me the answer, I heard a good one the other day, about a rabbi, a monk, and a priest, that I might share with ya.
Well, lemme take a stab at it first…Chinese uniforms, or maybe it was his socks, or his jock strap…baseball cards are made of cellulose, ya know…or it could have even been that they all et some genetically modified hot dogs, cotton candy, or peanuts ‘n popcorn…
ya know, it’s just hard tellin’. Oh! French bottled water.
I give up….what’s the answer?
Right now, there are probably hundreds of people who heard about Morgellons on the news recently and believe they’ve got it. Do, naturally, they’re checking on the Internet.
At Lymebusters, just on the current page of posts in the Morgellons forum, they will be advised to try sound waves, electroshock and washing with lye -that’s DRANO, for God’s sake.
The ‘victims’ scare me way more than the ‘disease’.
Lucky that Lymebusters just blocked unregistered users from even reading their posts. That should keep the number of new converts down a little. Even if it does break some of my links.
Thank God, they’ve made it more difficult for newbies to get sucked into their codependent community.
God says its a way to control information.
I also realized that Lymebusters couldn’t be accessed without registering. They were already deleting helpful potentially helpful posts that didn’t agree with their viewpoint, so holpefully their recent action will be beneficial to the purpose of Morgellons Watch. It seems likely that paranoia will prevent some people from registering.
It could increase their registered members’ numbers for MRF’s publicity purposes. Yay!
The morgie promoting the lye soap is the same one that told me last spring (actually, she went off really badly), that if seeing such things as suicides and self-multilation tactics bothered me, to leave their message board and to stop being concerned about any of the things they did because they were all adults, and they didn’t need to be told to stop, because they all knew perfectly well what they were doing. A couple of weeks after that, she’d returned with the news that she was taking worm pills for animals, and promoted that. A guy burning himself with a blowtorch had been what prompted me into posting that they refrain from causing their skin any further harm. They don’t like that type of talk.
I guess I have a differing viewpoint, huh. (The “yay” was sarcasm, naturally)
The ‘advice’ they choose not to delete is dangerous and potentially deadly.
It appears to me that the number of users were already increasing. I don’t see how the registration requirement will do anything but decrease that number. At the same time, I believe that more of the present users will register, increasing the “apparent” number of users.
I also agree with that.
I’ve only just come across this phenomenon… and after reading pages and pages of links I’m glad that finally someone has put together a decent rebuttal to this. If only the people involved could stop being so simplistic to think that the entire issue is being termed psychological – there may be a completely valid skin complaint, but the problem is the psychological belief that they have some dread disease that has vague and widereaching diagnostic critera, and seems to encourage patients to focus on “finding and removing” the “cause” in an incredibly unhealthy way.
It’s obviously at least partially a psychological issue compounded by physical issues which may have been a trigger or a result of repeated picking and scratching. I read on one of the forums a horrible thread where a woman described taking tweezers to her genitals and peeling things off and out of her most sensitive areas… not only that, but suggesting that all other women and uncircumcised men should follow her example.
It’s a bit like a trainwreck – I want to look away but the pathology (and I don’t mean physical pathology) is fascinating yet disturbing.
I saw one woman complaining that her life was hell and her kids ran away from her every time she brought out a new cream… I must admit, I’m not surprised. This is incredibly unhealthy for all concerned.
I have no doubt there are a whole slew of physical issues that could manifest themselves and be improperly diagnosed – I myself have had years struggling to get a proper diagnosis for one of my two health problems – and being told simply that it’s “in your head” is the least helpful thing you can say to a patient. However, a rational person will realise, if treated sympathetically, that mental/emotional state can affect your perception of a condition – just as depression or lack of sleep can worsen your pain tolerance, stress can worsen skin conditions, reduce your immune system and increase the likelihood of infections etc. There is a big difference between “imagining these holes in my skin” and “having holes in my skin that are being worsened by my inability to stop picking and prodding at them, refusing to accept my doctor’s diagnosis and focussing unhealthily on doomsayers”. Someone with OCD or BDD could focus on a minor or imperceptible blemish, spot or itch and fuss and pick at it until it becomes a huge crater in the skin. Originally, it was nothing. Now it’s a big deal. It can get infected. With repeated picking, repeated dousing with goodness-knows-what and so on, it’s certainly not going heal very well.
I have a chronic skin condition that leaves me covered (usually in the most sensitive of places) with huge, painful abscesses – some no bigger than a half an inch, but most of them between golf ball and tennis ball size. Abscessed areas rarely heal up completely. If they do heal, it often takes a long time with regular reoccurrances. It causes horrible scarring, pitting, hairloss, restricted movement and abscesses can “track” under the skin, linking to each other and forming very large “multi-abscesses” as it were. I regularly have fibres or hairs in either open wounds or scabs from both clothing and dressings. I have awful itching from them at times, where I’ve scratched myself raw in my sleep (impressive as I bite my nails to the quick). At times, just scratching, soaps, talc, heat or clothes rubbing against my skin can cause irritation to start straight away, and a full blown abscess to form within hours. To make matters worse, I’m very sensitive to medical adhesive dressings, even the hypoallergenic ones, and I end up covered in a violent weeping raw rash in minutes. I can’t use soaps, deodorants, antiperspirants, talcs, perfume or any form of hair removal in the affected areas. I have horrible pain that even hefty doses of morphine doesn’t always shift. I regularly run a fever from the inflammation and infection and this condition has disabled and even killed people in the past. I was lucky to be diagnosed very early on with this as I’ve known other sufferers who have never had a proper diagnosis or who have only got diagnosed after decades of suffering. Despite that, I try to get on with my life and live it to the full. There’s no cure. There’s no definitive cause of the condition. It’s incredibly hard to do things sometimes (especially as I have a separate medical issue that causes constant severe abdominal pain) but focussing on how sick I am 24/7 didn’t fix it. I sympathise wholeheartedly with people who are being told “it’s in your head” without being even routinely checked over first – been there, done that, it’s not fun in the slightest.
Getting a proper examination is the main thing and you don’t even necessarily have to accept one doctor’s opinion. Ask for a second opinion. I’ve had more than my own fair share of doctors who refused to do even the most basic of diagnosis on me – and it’s not an uncommon issue sadly. It seems they either don’t have time or don’t care. You can help that by making sure you list the problem, the symptoms precisely and concisely, and write them down so that you don’t forget. Be firm but don’t be whiney or aggressive. If you have questions, ask them. If you think that the doctor has neglected to test something appropriately, ask for clarification or an explanation. If you feel that you are being waved away without good cause, then confront them calmly and reasonably and ask why they feel that it’s in your head/psychosomatic/X rather than a physical condition/Y. And most of all – take in a reasonable, rational and calm bystander with you. A parent, a friend, a brother or sister. Someone who will give you support and another point of view of the proceedings. And if they want to refer you to a psychiatrist? Go for it. If there’s nothing wrong with your head, then the psychiatrist will say that in the reports. And if there is a psychological issue that may be exacerbating the problem – perhaps you may just end up resolving the issue (or at least learning some ways to reduce it’s impact on your life).
Sorry that link doesn’t work… try this one.
CiL, thank you for that highly lucid post. What you say makes perfect sense.
I think many people are simply mentally unable to accept that they have a condition for which there is: “no cure. There’s no definitive cause of the condition”.
You have my sympathy regarding your chronic skin condition, but I applaud you for being able to deal with it and to get on with your life.
BTW, CiL, both of your links worked (and yes it’s an astonishing description!), but LymeBusters has now blocked viewing by unregistered users, so anyone not logged in to LB will not be able to read it.
Thanks for the replies. 🙂 I can still read (just now at least) Lymebusters without logging in but they did say the re-enabled it for 24 hours blah blah.
Re: no cure, no definitive cause. I think you’re right. It’s hard to accept that you might have something that you can’t fix, or that doesn’t have a specific cause to it. It’s even harder when you don’t have a name for it. In a way, it’s easier if people can see the problem – like a lump or a cast on your leg – than when they can’t because often a non-sufferer can find it very hard to imagine what it must be like and even when they’re trying to be sympathetic, it can appear condescending, patronising or that they just don’t care… and the sufferer can be frustrated and feel dismissed or that they’re being told to “get over it” like it’s easy. Well it’s never easy, whether its a physical or mental issue. I just wish people could realise that mental health problems are just as real, just as valid, as physical ones and need prompt and accurate treatment just like any physical complaint. Sadly, there’s still so much stigma attached to psychological issues that people will go out of their way to deny they even might have one.
The problem is when you have a “disease of exclusion” – that is, one where you get told you have it when they’ve excluded all other options (or are too lazy to diagnose you properly) it leaves people trying to figure out why they’ve been cursed and how they can fix it. Everyone wants to find that mysterious causative factor and fix everyone up. The problem is that in many conditions, particularly these exclusion diseases, and many “umbrella conditions” they’re multifactorial – there’s often no one cause of the problem, and therefore there’s no one cure or treatment for it. When one person finds something that helps, however, they will often insist everyone else must try it and if it doesn’t work, that person must be “doing it wrong”. It’s human nature and desperation to give credence to a problem. It’s certainly easier to be able to tell someone “I’m sick because of XXX.” than it is to say “I’m sick and no-one knows why” or “I’m sick and the doctor says it’s in my head”.
So I guess the issue isn’t so much “difficulty in getting a diagnosis” or “having a condition which has no known cause” necessarily – it’s making up a condition or theory to fit your symptoms or blindly accepting you have condition X or Y without any scientific evidence to back it up – especially if, in the process, you are in denial about the real issue and not treating it. And, of course, it’s with those taking advantage of people’s desperation to get better again.
If you’re interested, here’s the skin condition that I have.
eMedicine – Hidradenitis
DermAtlas – hidradenitis
You might find that last one interesting also, in terms of photo research with things like NE, atopic dermatitis etc, even if some of them aren’t pretty.
The really sdcary thing is that many of these people not only have young children but also believe their children to be infected, as well. I shudder to think of two-year olds being bathed in lye and having their genitals ripped apart with tweezers, to cure a disease that does not exist.
Hello Michael and dubious naysayers. Michael, I have to admit that you are organized in your attempts to prove that Morgellons is a ficticious disease. I can see that promoting your view is very important to you. Why?
I also notice that in your organized response, you do an awful lot of generalizing, making it appear as if one person who claims to have the symptoms of Morgellons speaks for all others with those symptoms. Generalizing is one of the faulty-reasoning mechanisms used in biogotry. Are you a bigot?
In addition, you attempt to label those who claim to have this condition with any variety of mental issues. Are you a doctor with the expertise to diagnose a mental condition of a person whom you have never met? Is this regular practice in the medical field? I fear it may be. This professional-sounding name-calling further demonstrates your bigoted inclinations.
So, you, who does not know me, say I am a mentally ill because my body spontaniously swells up, I get extremely itchy, and when I apply any type of itch-relieving medications to my skin, I see blue filaments appear where I did not see them before. This sure is some tricky “dust.”
No offense Michael, but I feel you are the one who needs direction here. We’re not all crazy, and it’s not dust. Nonetheless, desperate people do desperate things. I’m sorry you don’t understand that.
I wonder if you are equally as indignant with folks who suggest the use of unprescribed controlled substances, veterinary compounds, caustic soaps, sound waves and electrical shocks to people they’ve never met? Aren’t they putting lives at immediate risk? Shouldn’t you be busy questioning their credentials?
Is this regular practice in the medical field?
“unprescribed controlled substances, veterinary compounds, caustic soaps, sound waves and electrical shocks to people they’ve never met”
Who exactly is doing the preposterous things you mention? Have you seen them? Do all persons with Morgellons do these things? If not, then who? Where did you learn this? You make it sound like their chopping each other up with hacksaws. This could be an embellished description of a walk through Central Park. And I thought ya’ll were trying to tell the world not to beleive everything they read on the Internet. It is my understanding, and experience, that people are attempting to take their health into their own hands. That’s what happens when they’ve been abandoned by those trained to help them. You don’t seem to get that ultimately we want to prevent enduring a miserable life with this disease.
I apologize to you in advance for these comments.
All the general public has to do, is read morgie message boards and easily draw their own conclusions.
From my own personal standpoint, I’ve lived with…plus I’d gone through a particular, one-time, extreme ordeal…all the physical symptomology of what has been dubbed as “morgellons disease”.
After reaching an understanding of that particular ordeal that I’m referring to, in the aftermath, through a radio broadcast on “morgellons disease”, I was directed into finding myself in the presence of “believers” through my membership to a couple of message boards.
I’ve had my opinions, for quite some time, and any conclusions I’ve drawn after learning of this phenomenon “morgellons disease”, were very easily arrived at, through the assistance of not only reading, but, through the correspondence of message board members.
If the views I hold seem to be based on generalizations,
it’s just due to the majority rule governing my opinions on the matter.
That’s just the way things go in life, and not at all an unusual occurrence.
It seriously appears that if anyone has a very large problem feeling offended, due to being included within opinions on a group, as a whole, that there is something you should examine about yourself.
Everyone, other than a morgie person, can see that Michael is not guilty of any charges from anyone.
Based on people’s own words, which are too often way too highly reactive, the group, as a whole, as well as separate individuals, reveal things to us all about yourselves.
All the ugliness has always been excused, and justified, due to “being sick and not feeling well”, and also, due to “brain fog”
Too much chaos is present when trying to say anything of value to a morgie…too many chaotic ramblings are abundant.
There’s too much of a whole lot of stuff going on to not see it real easily. So, if others talking about it is more than anyone who is a morgie sufferer can bear…
just keep your eyes off of it!!! Be…an…adult. Have you really no control over yourselves whatsoever?
(Delete this if you have to Michael, due to the repercussions, that will, no doubt, ensue.)
Also…this person, known as Michael, is NOT, even in a remote sense, an enemy to any of you!!! This is a very kind and highly RESPECTFUL person, being so sensitive with what they’re doing here, as well as when communicating with anyone, and realizing, just like I was too acutely aware of when I hung out on the morgie boards, that morgie people have to be handled with kid gloves.
Michael is a solid, righteous person, and if you’re threatened, in any way, whatsoever, I implore you to ask yourself…
“WHY? WHY? WHY?”
Miserable, yes. Quite. If you don’t trust doctors, get with the program. Any program, as long as it WORKS. None of them have yet, because, through no faults of your own, probably, the majority of you ain’t got the sense to fight your ways out of a wet paper bag.
I think that is a “Morgellons Fact Check” from all that I’ve concluded, based on my having witnessed things I’ve read coming directly from all your own hands.
“Desperate people do desperate things”, “Drastic things require drastic measures”, yeah, yeah, yeah
…”BUT” for people lacking the mental capacity, whatever the cause, therein lies my very point, entirely.
Now then, people such as that sign up to MRF and in the belief that you’re going to have a dream realized.
In the meantime, regardless of the reasons for it, keep doing all the wrong things to keep it going, and, in the process, do the same to treat your children and pets, ignoring anything sound that has been offered as a diagnosis from a legitmate doctor.
Become worse and worse, and more and more scared to go to a doctor. Let your children suffer without medical attention, for fear that if you seek help, you’ll end up losing them.
Don’t take your pets in to be treated for their legitimate health concerns, just watch them suffer a slow, agonizing death, right before your eyes, so that you can say “morgellons disease” killed them.
These are but a few things, but anyone with a set of eyes can read what morgie people report, themselves. Too many morgie people report actual illnesses, some that are very serious, too, and their minds are so toxic that they are of this bizarre belief that “everything” is “morgellons disease”.
They’re all hanging on to a what? A d_______.
And I would like to know why they don’t think so.
(No, I wouldn’t)
Hey adapted oops, smileykins. So, whatever happened with those bugs popping out of your leg from under your dress? Ya know, we all wondered about you then. Afterwards it was your insessant it’s this strange malady, or this one, or this one… And wasn’t there some, shall we say, talk of extensive drug use in your past? Hon, you really shouldn’t be lecturing me about morals, ethics, and certainly not sanity. You’re just too funny.
As far as Michael goes, I don’t know that he needs your protection. I don’t have a problems with him, when he’s presents an unbiased case. Why do you assume that because one does not concur they are automatically vicious. I know why, because you think you know me. Yes, you pretend you do. Honestly, you’ve gone to so many shrinks, that you’ve learned a trick or two. Gosh adapted, Mary, whatever your name, you need to move beyond this. I don’t know that you ever had Morgellons, but I do know that you, dear, ARE delusional.
I guess you must have felt very hurt by being booted-out. Honestly, I wouldn’t care less if I were. I’m looking for solutions; relationships are secondary. Be glad you found bugs, and move on.
Michael, let’s pretend, for a moment, that your intentions are honerable in that you hope to convince a person or two that they, I, have for the first time in our lives a mental problem. I might be more swayed if you could tell me how this happens. What precisely is going on in the brain to cause the sort of malfunction in which we begin to see “dust” appear from under our skin?
Hello, Linda. I don’t think anyone has said, or implied, that you don’t see things coming out of your skin. Many of the “Morgies”, however, have some pretty whacked out ideas about what this cellular debris, immune system components, and industrial fiber really is. Go take care of cult. They need you.
A partial answer to “unapishtim” regarding what is going on in the brain that causes one to see things. Monosymptomatic hypochondriacal psychosis, (MHP) can be mainfested in many ways including delusions of cutaneous parasitosis, “fiber disease”, neurotic excoriations and hair pulling. It would appeaar that the symptoms of MHP are possibly induced by dopamine transmission hyperfunction, a state which, for example, can be induced by amphetamine. Dopamine transmission to the brain can be prevented by several neuroleptic drugs through selective receptor blockade. This may explain their antipsychotic action and the relapse when they are withdrawn.Haloperidol and especially pimozide are highly specific dopamine blockers. Both drugs completely inhibit certain behavioral abnormalities induced by amphetamine. This explanation could also account for the beneficial effects of pimozide on MHP. (adapted from Monro, 1980).
When was this, that I’d lectured you about morals, ethics, and sanity? Also, your interpretation of my protecting Michael, is a bit strange to me, as well.
You’ve given me the impression that you don’t understand more than several things.
In reference to the times I was on morgie boards as “Adapted”, I tip-toed around on them, unbeknownst to you, hoping to know the right approaches to take with people, and yet, there never was one. I could’nt even make it to square one with most of the people there, other than in emails and private messages. For “illness support message boards”, they certainly leave much to be desired.
You’ve mentioned, “Ya know, we all wondered about you then.” Who is this “we”, because I was there, and spoke openly, responding to anyone that asked me anything.
“We”? I’d like it if you could explain that for me, please
It’s no secret, that I did drugs in the 70s, and anybody who knows me, knows that. I’m as open as a book and have nothing to hide.
Those “bugs” that you’ve mentioned that came from underneath my dress? Those weren’t bugs, that time, but more like something in a larval stage, and quite mucous-like. I admit that they were a delusion, as I have other things from when I was ill for two months, if you care to read about it in the link below. I suggest that you take the time, because it might help to explain a lot of things for you.
here’s an excerpt…
“The sores eventually filled with fluid and exploded. As the fluid that bursted forth made contact with anything, as usual, it ate holes into it. Next, as I watched in pain and disbelief, although it was fascinating to witness, bugs, that looked like sweat bees, crawled out of the sores, leaving behind holes in my arms and legs from where they had been. As each one dried off and took flight, I killed them after they landed on the wall.”
I haven’t been to a lot of shrinks. I just have insight into people and situations. All that I’ve received in the way of any psychiatric care, was when I was referred by workers’ compensation, to one doctor, to be evaluated and treated for depression, due to my on the job injury that disabled me almost a decade ago.
I appreciate your giving me the opportunity to respond to the questions you’ve harbored, and raised with me, which leads me to ask just one of you, if that’s all right.
It pertains to a person’s convictions. Is the belief that you have something known as “morgellons disease”, what you’d consider to be a conviction of yours?
I’m sorry, but I missed this very telling comment, upnapishtim…
“I guess you must have felt very hurt by being booted-out. Honestly, I wouldn’t care less if I were. I’m looking for solutions; relationships are secondary. Be glad you found bugs, and move on.”
My goodness gracious, upnapishtim, you must have missed my posts from around that time, so you don’t know what I left for!! Did the cult claim that they booted me out?
Plus, the questions you’ve asked of Michael…I’ve suggested that it would be a good thing to consider dropping some of the “research” and learning about brain functions and mental health, along with the other things pertaining to overall health, skin anatomy, immune functions, nutrition, etc., that would genuinely benefit anyone with a distrust in doctors and the world they live in.
Upnapishtim, I’m just doing this as a hobby, which hopefully can provide people with some useful information on which they can make better informed decisions regading their health care, and the care of their loved ones. I’m not trying to change your mind.
I found your response the most pertinate. I am not a doctor, but I have a minor (read an article or two) understanding of how dopamine affects behavior, and how it is implicated in mental illness. I do not have a mental illness. I do not, nor have I ever done any of the drugs you speak of. It’s somewhat nice to not have to repeat myself when speaking of the incidences in which I was able to scratch fuzz from my legs in the presence of my mother. She also does not have a mental illness and does not do drugs. If I am to believe that I don’t have a fiber-producing condition (call it whatever) then we need to be able to account for the fact that others can see it too. I’m not talking a little dust here either.
Thank you for the response. I’m not trying to change your mind either, but I’d certainly like you to look at the whole picture. I do get a sense that people, like doctors, can tend to see their patients as categorizable boxes of problems. Sometimes the categories don’t fit, as I observed you acknowledging in your response to the whole dop thing. (Mind you, these categories are extremely offensive to people who have never done anything deserving of such shame.) Nonetheless, I have a hard time buying the “dust in the environment” theory; I just don’t get how I could possibly be scraping so much “dust” from my legs that I am able to wipe it on a paper towel. Again, the response from your fellow naysayers is to say that I’m nuts while I and all who REALLY know me know that is not the case. Is it really totally impossible that something different is going on? If it is not an infectious condition, could it be a genetic condition? I am absolutely sure that it is something more than dust; I just don’t know what.
“My goodness gracious, upnapishtim, you must have missed my posts from around that time, so you don’t know what I left for!! Did the cult claim that they booted me out?”
Yes that’s what I heard. Remember what I said earlier, I hadn’t been around much during that time. I didn’t know what happened. I was only told recently. Doesn’t matter.
And yet, more lectures. Yes, my immune system…yadda, yadda… what more don’t you think I’m doing that I should be doing? I have few to no skin symptoms now. My kids are doing fabulous. I can only pray that it stays that way.
I don’t distrust all doctors. I don’t distrust my doctor. Rather, I hope more doctors might stand up to the plate and help us figure this out. Maybe Michael thinks he is doing that–I can’t fault him for trying. Again, you don’t know me well enough to make any determinations about how I feel about anybody. Perhaps you are incapable of knowing me.
I know when Adapted left lymebusters because I left with her. Nobody booted either one of us out. I’m not surprized, however, if they have lied. It won’t be the first time, and it’s not apt to be the last. Why are they so afraid of the truth? Now they’re requiring registration because the truth was shaking their foundations. That’s the typical behavior of a cult. Now about that dust you’re scratching out of your skin. That’s skin. Get a buff puff and some exfoliating body wash, and go to town on it, but be gentle. The body sheds 3 billion skin cells daily. Don’t remove 6. We all came from dust and we’re gonna return. Brain fog? Well, you’re not a spring chicken any more. But you’re look more like one if you take care of your skin. You might have some other problems. Let someone diagnose them. I don’t mean someone that professes to know something about “Morgellons”. If he does, then run, cause there just ain’t no such thing. I’m glad to hear that you are all doing better.
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Don’t forget the pedialyte. Dehydrated sebum makes tiny, hard, wax-like beads. Getting rehydrated isn’t always as easy as it seems, either.
upnapishtim, maybe you shouldn’t believe everything you hear, plus, again, I have never given you a lecture on anything!
You said nobody, or maybe you just meant me, knows you well enough to make any determinations about how you feel about anybody, and perhaps we are incapable of knowing you.
Well, all that I, or anyone else on the internet, can possibly know about you, is all that we have read that have been your very own words. I’ve read them, and drawn conclusions based on them, just as I have others. You’ve read my words, and done the same. It’s relatively simple. When our words are brought back to us, we should have no problem whatsoever when they are scrutinized, being able to stand by what we’ve said ourselves, right before our very eyes, and see where we have made mistakes, if any, in causing those beliefs to be formed. That’s the best anyone can do over the internet.
I’ve witnessed reading what have seemed to have been grave mistakes in your abilities to understand things, and an apparent, complete, block when they’ve been pointed out to you.
And as far as nobody being able to determine what you think of anyone goes, well, you have displayed a volatile temper quite a lot, and that’s rather of indicative of what you’re thinking towards whomever you’ve done it to.
With the remarks you’ve made to me, here, today, I have a pretty good feel for that, too, and know that I’ve never done anything to you. Well, nothing other than your accusing me of
lecturing you about morals, ethics, sanity, and, now, your immune system.
If you’re doing well with your skin, currently, and your children are doing fabulous…
then, what exactly “is” wrong? What symptoms “are” you having, that you’re hoping doctors can step up to the plate and help you figure out?
I’ve since run across another post of yours, elsewhere on this blog, upnapishtim, and it’s demonstrative of what I said, here, in addressing your concerns that people are incapable of knowing you. The comments you made are also reflective of the word “vicious” that I believe you employed here, as well….
“Why do you assume that because one does not concur they are automatically vicious.”
upnapishtim, I’ve never assumed that anyone is automatically vicious if they don’t concur, and I have never said that!!!
I stand 100% hard and firm on that, too!!!
If you, or any other morgie people feel a threat to your beliefs, or even suspect, without justification, that someone doesn’t “concur with you”, you are very well aware of what you, and other morgies do.
Or are you telling us all that you truly are not aware of your actions???
It was hard to try conversing with people lacking comprehension when I was a registered morgie message board member, and why I left.
I think you’d better get some help, and that’s just about all I can say.
Hey Bugs, is that you there hiding in the cotton? Wow, your writing style has really changed, or maybe it is just different when you’re not being meticuliously descriptive. Now I know what you meant about the obsessive-compulsive thing. Ah yes, the truth, the truth…and you know so much about “THE TRUTH.” It’s too bad I’m not producing many fibers these days or I’d have you come over and witness my truth. Yes, there is your truth and my truth. I’ll say this, I’m so happy to learn that you and adapted are frauds. Ya’ll had me a bit freaked-out.
Mary–I don’t own a microscope, sorry. I’ll be sure to get some help; I’ll just turn on my tv and tune into…what’s the name of that holy roller you watch?
I don’t agree with the restrictions at Lymebusters, but that’s politics which I don’t really want to bother with. I’ve got bigger concerns. I’m not going to bother with you two anymore either; I’d rather be picking the brains of people who actually know something.
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I responded to everything you addressed me with,
upnapishtim, and yet, you didn’t answer my couple of very simple questions. Oh, well.
I think we’re real saddened that you can’t read our blog in the link I provided for you, too. We’ll just try real hard to get over it, though.
Good luck, and tell Exhibit No. 4 we’re awaiting their arrival.
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Michael, I’m sorry that some morgies have it out for Tall Cotton and me for defecting, although that’s not really it. It’s like Tall said, in his comments. It’s apparent, it always was, and I guess they can’t help it. I don’t mean to be contributing to your blog being a place for them to come and exhibit their hate-filled emotions…but, that would be happening anyway. I’m just sorry for it being so weird.
I watched how I dealt with them, as carefully as I could, back when I was a registered member of their message boards.
I’ve said before, that although it isn’t fair, they want us to view them as being in control of thier faculties, so I think there comes a time when a line is crossed…here, outside of their walls…and it warrants treating them as I would someone without problems.
Here is a…
“Morgellons Fact Check”
“Your posts on lymebusters had me so freaked-out, I had to remove myself until you left.”
Upnapishtim is Linda. That first person I’d encountered three years after I’d put my experience behind me as much as I could, until Coast To Coast radio did a broadcast on something that sounded like what I’d experienced back then. I went to the website they’d directed listeners to go to, and I discovered a message board there.
Upon some of my initial comments, giving a rundown of having assumed that being gravely ill and having passed kidney stones had caused me to have hallucinations, and that I’d ascertained that fiberglass insulation I’d been exposed to had also played a role, Linda told me that I had been all wrong, because there was a real disease called morgellons, and based on what I’d said, that was really what I had, and she welcomed me there, saying I’d come to the right place.
Okay, so I went forward with giving my account then. Heck, the woman done told me those weren’t hallucinations, or fiberglass cutting its way out of my skin, and that everybody there had the same thing. When you go through something like that, all alone, you need to talk about it, so I was free to, then. No holds barred.
Lo and behold, what’s she do next? She freaked out worrying that she and her kids were gonna advance to that stage. A whole lot of them freaked, and called me a “crazy freak”. Believe me, I had one helluva job on my hands of trying to un-do that mess I was led into.
So how did I handle it? Slowly. I tried calming her ass down, first, mostly, talking about the differences in chronic and acute things. I mean, I had a mess! So, I went all the way back through each stage in my life recounting anything that ever happened to me, any kind of infection or injury. I stressed, and I stressed, and I stressed, that I had been accustomed to FIBERS all my life, and having been, since early childhood, I’d always assumed that it was a NORMAL thing.
I couldn’t “un-do” what was already done! I got trapped, trying to correct my mistake, and then began realizing there were other people coming forth who’d had pretty much the same types of experiences. I hung out there, and learned quite a good deal about these morgie people along the way, during my time with them, 02-05/09-05.
Amidst her other messed-up-sick comments to me here, she says I had her so freaked-out that she had to remove herself from that morgie board and that she didn’t come back to it until I left.
You are a liar, Linda.
The pages are still there as proof, but I, myself, always knew your ways. Thank you, for displaying some of it here.
That’s a “Morgellons Fact Check”.
You shouldn’t call us frauds just because we don’t want to be a part of your group. Let’s keep the conversation honest or not have one at all.
Hey BUGS ALIVE. Is it me, or does the sign-on name you used indicate something scary? Something that might disturb people who know they have something, but would prefer not to believe that they are going to be birthing bugs, like Adapted/Mary claimed? Might that idea not FREAK SOMEONE OUT?
I’m sorry that you find my perception of the situation offensive. On Lymebusters (which I had joined in Jan05, not three years ago) Bugs wrote lengthy, tedious observations of “the organism.” I have seen stuff (obviously fibers/fuzz), but nothing I’ve seen could was doing all the acrobatics that bugs observed. Of course, I was not spending copious amounts of time under a microscope to see it do these things either. I recall that he said over and over in several post that it was “intelligent.” Am I wrong bugs? So, after reading such posts, what I am expected to believe? Am I infested with some sort of intelligent alien lifeform? That’s how you made it sound. There, sir, is a theory my psyche can’t cope with. Despite your efforts, I do not believe that I have been infected with an alien lifeform. Yes, that idea was a bit too freaky for me.
Mary, I recall that, as a result of your incessant posting that went into all hours of the night (as Ant observed), I learned much about diseases that I had never before known. Had I followed all of your “leads,” I’d be a hypocondriac today. I also recall a person with the screen name “San Francisco sufferer” chastizing you for being overzealous and distracting, since you managed to almost take up the entire page with your posts. In addition, the bugs popping-out from under your skirt didn’t sit well with me either. Day upon day upon day you posted of every horrible disease known to man and attempted to link it to Morgellons. Might that not FREAK SOMEONE OUT?
And here we are today. YOU TWO, of all people, are telling US that WE ARE CRAZY? Either you were always frauds to begin with, or you are the weirdest couple I ever expect to have known in my lifetime.
It goes without question that I believe the combination of symptoms that has been termed “Morgellons” is a real disease. If I could tell you more about it, I would. I’ll say this though, I do believe that the media attention (the George Norry show, etc.) about the disease can attract people who have mental illnesses. They may or may not have Morgellons, but they do make the rest of us look like loones. Don’t generalize.
Linda (Upnapishdim) Ahera,
Yeah, I had some pretty wild theories alright, and the strangest ones were based on hallucinations. I was crazy, and I havn’t tried to hide that, once I realized it. Once I did realize that my mind was playing tricks on me, I began separating truth from fiction, as best I could. It wasn’t easy, because the hallucinations seemed so real. Finally, I had to give up trying. The data was flawed, and it couldn’t be salvaged.
I was caught up in the Morgellons nonsense like the rest of you at lymebusters. I was looking for a pathogen that doesn’t exist, and I was looking for one that could do those “tricks” that I thought I observed it doing. I wound up with a bio-engineered shape-shifting dictyostelium. It would have taken a highly intelligent organism to do what it seemed to be doing. But it was all utter non-sense. It made some pretty colorful stories though, huh?
What else do we need to talk about? Drugs? Okay. Yeah, I took drugs. A whole lot of drugs, a whole lot of times. That’s no secret either. Drugs almost killed me. But after quitting drugs I started trying to help the other members of the message board with practical things, like encouraging them to eat nutritional meals, get adequate sleep, avoid stress, drink lots of water, and to stop obcessing with the “disease”. I stressed the importance of not putting harmful chemicals into the body, and the importance of keeping the kidneys functioning properly so the wastes don’t have to be eliminated through the skin. But no one wanted to hear anything practical.
I had come out of the madness, and the rest were still bound inside the cult, chasing Mary Leitao’s illusive (non-existant) organism. They all wanted a pill to kill it with, and they kept experimenting with everything under the sun. Once I quit playing the game, I was no longer welcome. My way of thinking had changed, but their’s had not. When I spoke the truth freely my posts were deleted.
Adapted realized that the “Morgies” were suffering from several different health problems, and she posted a lot of information concerning those issues. They weren’t all meant for you, Linda. They were meant for the group. There was something there for everyone. But again, the group didn’t want to hear about diseases that already were known to exist, and had names. The group wanted a disease called Morgellons. The problem is, there is no such disease. They wanted its pathogen. It has no pathogen. We both offered real help for real problems, and as a result we were treated like shit.
So, go back to your cult where you can have the sympathy that you are looking for. Reinforce their delusions while they reinforce yours. Experiment until it kills you, if that’s what you are determined to do, and chase your shadows until shadows are all you can see. I’m through with it. I’m trying to help people before they get caught up in that madness. It is madness. If I could shut down every Morgellons Board in the country, I would do so. They are harming a lot of people. If I could shut down the MRF, I wouldn’t hesitate. It all started with that insane woman, Mary Leitao. She’s too blinded by her delusions of grandeur to see the harm she is doing.
Upnapishtim. I know from all the one-sided efforts to communicate with you, past and present, that you have something going on creating a mental block. I have explained all about my remaining on the message board through my efforts of “playing the game right”.
I shouldn’t keep responding to whatever the cause is of people, like you, needing explanations of my actions, or who I am, but I feel sorry for those who have a need to know. That person you refer to wasn’t the only person saying anything to me on that message board, after I had posted some of the experience of my delusions, Linda. Anything I decided to post about any possible pathogens or illnesses, woman…WTF? I never posted anything outlandish, in my opinion, but only played the game to stay there.
Why are you implying that I was the only person that has ever done that? Why are you implying that I am the only person that ever went on with lengthy posts? I’m very sorry that you chose to fixate on that, rather than my sound reasons, directly to you, on matters. Linda, try to get honest, and try to deal with reality.
It’s apparent that you are prone to some degree of hysteria, and I’m sorry, but you aren’t really my, nor anyone else’s responsibility to try and “fix”. You have always sort of separated yourself as a person who wishes to not be looked upon as a member of the group of people on the message board, but rather as a mother in search of answers for herself and her children.
That is the way that I always responded to your pleas that someone assist you. I was very direct with my responses, seeing your mentioning the exact types of things that I had experienced with my child in her early years, on up, in the all the words you had written describing quite a few situations with your children. Some things, nobody else even replied to you over. I did, and nothing ever got through to you. It never has.
I’ve told you from experience. Experience outside of that two-month-long bout with illness that is described in Tall Cotton’s and my blog. You are someone that seems to need some attention that you aren’t receiving. I’ve been very honest with you, trying to give you the reasons you have blue fibers on your legs, as well, more than once. I have been very honest about the reasons for things you have seen in your children.
That includes addressing your major fear concerning what you always thought were “white worms”, with my telling you that it was coming from your baby’s disposable diaper, and how I had to use only cloth diapers on my little one. The cellulose had penetrated her skin ad embedded itself in it. You and your children have allergies, for one thing. Your middle child needs to stop being allowed to eat so much cereal as his mainstay diet.
You beg and beg for help. You insist that you want someone, anyone, to help you understand things. I’m here to say, “Oh no, you do not, Linda. You couldn’t possibly!”. There is a mental block there, for some reason.
For whatever reason you need me to justify myself to you, I will, again. But you won’t understand it, because of that block that you have. I was tired of trying to converse with people that can’t converse, and having you here, still doing this, well, yeah, maybe I do need my head examined as to seeing what the cause is, that makes me try explaining things to such types of people. I guess I’m just all about communication, and when it isn’t accomplished, I keep trying in the hopes that it will be, maybe.
Being up for days on end with a painful permanent disability, also, has been explained, numerous times, on that message board. I don’t understand people’s fixations that they have, over me, and I never will, but I’ve said it too many times. The reason I was occupying myself with it was from not being able to sleep for 3-4 days and nights, in a row, sometimes more, due to an excruciating level of pain.
I’d respond to countless posts that people were making on there, with no replies, yet numerous amounts of people were listed as having viewed their posts. To me, that is unthinkable to ignore people like that, just reading and not responding to them. So I would, in efforts to divert my focus elsewhere, to try handling my painful condition. I’m just as tired of explaining myself over that, as I am of talking to your head, and never getting through to your brain.
Whether you know it, or not (and yes, this is another one of my generalizations, like anyone looking in on morgie message boards can form so easily), a common thread among people who believe that they have morgellons disease, is to ask, and ask, and ask, questions of other people, demanding explanations from them, but such people clam-up and do not want to answer questions that are posed to them. There is some type of “child-like” qualities in all of you, as well, that yes, is another generalization.
It’s like nobody has any sense of self, and can’t think for themselves. It’s not a happy thing to see, but I didn’t realize how mixed up I ever made you, personally. You would have to be at a total loss, now, with the things posted on there, because there are too many things far beyond anything I put, about legitimate things, outside of my delusional experience. It’s like you’re a little babe in the woods, or the damsel in distress, except it’s perpetual, never facing, or acknowledging, the reality of things in your life.
I previously asked you some simple ones, here. 1. Is the belief that you have morgellons disease a conviction? 2. If you’re doing well with your skin, currently, and your children are doing fabulous…then, what exactly “is” wrong? What symptoms “are” you having, that you’re hoping doctors can step up to the plate and help you figure out?
This time, feel free in saying I’ve given you a “lecture”, because it may fit the bill now, but someone needs to tell you how it is.
Shit, let me say that I know that with a husband and three kids, you have a lot of reality-facing in your life. I apologize, because I didn’t mean it that way at all. I only meant pertaining to the legitimate causes of the reasons that you think you and your children may have something outside the realms of reason.
Now lady, hang on here a fool minute, because I see that you’ve said…
“….you are the weirdest couple I ever expect to have known in my lifetime.”
Linda, you’ve been consistently saying that nobody “knows you”.
You do have problems that you need to face. You’ve told us in your post, whether you realize it, or not, in describing how you were directly affected from reading just “our descriptions” of delusions and other postings on the message board…that, guess what?
“Morgellons disease is a lie.”
Look at how you’ve admitted just how very easily influenced you are. “Blame us” for that? Get a grip woman, and get a handle on yourself.
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I’ve just come back from being out, and I looked your post over again, Upnapishtim aka Aherah, and aka Linda, because I didn’t know what you referenced with your particular comment here…
“On Lymebusters (which I had joined in Jan05, not three years ago)”
You apparently must have derived something incorrect from my having said…
“Upnapishtim is Linda. That first person I’d encountered three years after I’d put my experience behind me as much as I could.”
Linda,that means…Three (3) years after recovering from when I’d been ill for 2 months in 2002, making it the year 2005, and it was in February, like I used to openly say on the message board, and to you, and in my story on our blog. That may only be just a memory related problem, but, I don’t know.
Still, aside from that, I have said, many times, that morgie people are very lacking in comprehensive skills. I stand by that belief, hard and fast. I know I’m offensive with my opinions, but it’s just too apparent to not talk about since it’s such a large part of the overall problem in that population of people.
You have a whole lot of resentments pinned directly on Bugs Alive and Adapted, and you think that we’re responsible for you, somehow. Your anger’s undeniably evident, and I wish that you had addressed all of your issues with us as they occurred. We’d have gladly spoken with you about these things. Neither of us has had anything to hide, from anyone, but surely you have to know, as well as anybody, that neither of us could have said “we had delusions”, openly, on any morgie boards. There were ways to private message us, as well as to email us, though. Other people have given, and continue to give, descriptive accounts as bad as ours.
You’re so angered at me for having written about my experience, LINDA, but you were the first person I encountered at Lymebusters, that told me, when I said that I had attributed my ordeal to hallucinations, back when I’d been ill in 2002, that, “NO”, it hadn’t been, because my symptoms matched the people there, and it was a real disease called morgellons, just like I’d just heard on the radio when my kid called and woke me up to tune into it.
So, Linda, just thank yourself for that. There have been numerous other people on there talking about such things, so why is it that you are you not equally mad at them, like you are at Bugs Alive and me?
Does calling Bugs Alive aka Tall Cotton and Adapted aka Smileykins “frauds”, mean that since we came to terms with knowing we’d had our minds showing us things that weren’t there, that you think that means that he and I pretended to have morgellons disease, and that in admitting they were delusions, then, that makes us “frauds”?
Tell me what you mean. Please don’t clam-up. Call me crazy, tell me I’m so ugly I have to tie a porkchop on a string around my neck to get the dog to play with me, if you have to, but please just explain yourself. Look at the lengths we have, for you. Just for you. We’ll give you our undivided attention.
Hey you guys and gals, this Morgellons Fact Check is a valuable post, and I and others have been forwarding it to many concerned folks nationwide as an example of a rational and factual blogsite. Can’t you move over to the of-morgellons.blogsite.com or somewhere to fight out your personal battles. Now it’s looking like a bunch of silly people have commandeered this site too. One of you said in the India post you would try not to tear up the house while Michael is away.
I’m actually nearly back up and running now.
I think johnboy has a good point – off-topic comments distract from the main post. I’d like this particular page to be a useful resource, and to that end I’ll probably delete irrelevant posts.
If there was enough interest, I’d consider setting up a “proboards” BB, an antidote to LymeBusters, which would be a better place for such discussions.
Johnboy, this display is relevant, though, in showing a prime example of a person that believes they’re afflicted with morgellons disease.
I’d prefer that she hadn’t brought her misconceptions and hostilities here, but it’s here, she is as confused as ever, and since she is here, she is quite representative in illustrating a very good point in how morgie people think.
I believe, as I’ve said, these problems should have been addressed, and dealt with, on the morgie boards, but she has reserved them until now, and chosen to bring them before us all here.
Wouldn’t it be unkind to just ignore her? I’m sorry it’s interfered with your plans in using this blog, but how would you handle it? I didn’t ask for her to do this.
Before Michael’ absence, I’d apologized over this type of thing, before her appearance, and anything could have been deleted by Michael, if it was deemed irrelevant.
Oh, hey Michael…just delete all this. Welcome back, by the way, and I’m sorry. I directed this woman to our blog, several times, you know.
I suggest that you stop mailing out the blog for others to read until you have taken the time to read it yourself. If you had you would have realized where the trouble originated. I think if someone came over here and took cheap shots at you with lies, you wouldn’t like it either. Now, if a fight comes there, we’ll fight it there, but if a fight comes here, we’ll fight it here. You better choose sides or get the hell out of the way.
This post has been removed by the author.
I don’t see a fight anywhere on here, but rather, just a very confused woman with some unique problems.
Upnapishtim: Please, take your grievances here, now….
Tall Cotton, I think you misinterpret John’s point. This is a blog, a personal blog, and not a discussion board. It’s a place for me to post stuff about Morgellons. The function of the comments is to discuss the posts. I’d really like the comments to remain on-topic.
John has perhaps not read all of the comments here, but that’s not what he’s referring to when he says he’s forwarded the blog to someone. He means the actual blog posts, specifically this one, and NOT the comments.
Many comments are useful, if they build upon the main post. Especially posts like those by “covered in lumps”, above. But discussions about who said what on Lymebusters a year ago are simply distracting noise for all but two or three people. I think that’s what Johnboy was saying – that the usefulness of this blog would be improved if we keep the signal to noise ratio a little higher.
As such, I’ll delete this comment, and maybe some others, after it has been read.
I understand, but the crazy woman came here and attacked us. I don’t mind the comments being deleted, as long as her lies are deleted too. I think they should be. But when her lies are sitting here, where the whole world can read them, with no rebuttal, nothing said in defense of the truth, are we suppose to simply ignore them? I understand what Johnboy was saying, but it’s also very clear that she started the trouble. Delete away. I do understand. Just don’t expect us not to defend ourselves when it happens again.
This public unravelling of this woman’s hasn’t been real fun for us, Michael. We’ve known this is not a message board, and I would be royally angered if I were you, as well as anyone else seeing it. I can’t just grab her hand and walk her over to our blog to air her problems. Please try to understand what occurred here, and the “hows and whys” of it, and accept our apologies.
I’m not blaming you two for anything Mary. What I’m saying refers to your credibility here. You play both sides, and you play them hard. If you’re not a fraud, and not a hypocrite, then WTF is going on? You were really really sick with (Morgellons?) and now you’ve come to realize it was all just a silly little delusion? Give me a break.
I’m sorry for not having the patience to wade through all of your comments.
Just wanted to note that this blog serves a good purpose, regardless of any skirmishes in the comment areas.
I have ‘suffered’ from chronic hives for *years*, although “suffered” is a bit dramatic – more like “been annoyed”. I assume an allergy, but have never identified a specific cause, it’s just one of those unexplained things. Chronic, unexplained hives are not terribly uncommon, there are loads of people like me.
Now, over the last couple of weeks, “Morgellons” has gotten widespread press. I happened to be having an attack of hives when my local TV station ran the lead-in for their story. Once I’d seen the report, clearly I did not have Morgellons, but I did Google it up out of curiousity. Only *ONE* site I visited that evening – Morgellonswatch – did NOT suggest that my symptoms could be this horrible new plague.
I can EASILY see how a more suggestible person, with chronic unexplained itching and rashes, sitting in front of her PC that evening and reading all those ‘personal accounts’ of Morgellons, could begin to wonder if maybe that’s what her problem is. I can EASILY imagine that person picking up a magnifying glass and finding “fibers” on her skin. In other words, I can EASILY see how a simple case of chronic hives can turn into Morgellons.
Whether or not Morgellons truly exists, there MUST be counter-point information out there and available. If Morgellons is real, then that ‘community’ does not benefit by having thousands of people with perfectly common conditions self-diagnosing themselves as “Morgies”. And certainly no one with common hives should be encouraged to go digging for fibers and critters in their skin.
I just took a Benadryl and went back to bed that evening. But I *could* have stayed up the rest of the night convincing myself I had a wicked new parasite, and I imagine more than a few people did. If the “Morgies” don’t like the DOP label, then it is in their best interests to discourage people like me from presenting with DOP – and that’s what it would have been.
And as for everyone who suddenly began to itch while watching the local news, it was surely in their best interests to find a counter-argument like the one on this blog, take a Benadryl, and go back to sleep.
johnboy – Don’t tell me Michael is paying you also. Shame on YOU!
Hello Bugsalive and Adapted,
I’m wondering …when did you both
have your sudden enlightenment?
Does it not worry you that you
went from one unquestionable belief
then swung to another which just
happens to be the complete
It’s quite obvious you are both
delusional but my biggest worry is
whether you can survive the next
fall when you realize that you
are both horribly wrong.
My opinions are not representative of the owner of this blog, nor do they represent the opinions of anyone other than Smileykins.
It’s just that I feel strongly, that while “morgellons disease” is many things, to many people, this particular behavior is suspect as being involved, among a wide range of behavioral disorders that look as though they’ve gone undiagnosed and untreated.
I’d like to also be sure to add that there are morgie victims, who don’t express themselves, over the internet, as sounding like they have too much more going on other than what they say they do.
I’m not “diagnosing” over the web, and I “am not” discounting, whatsoever, that these people all have physical problems with their health.
All that any of us can possibly “know”, unless we have “a morgellons victim” in our personal lives, however, is what the “victims” reveal to us, here, on the internet.
Emotional-behavioral disorders are “seemingly” undeniably present as a very significant feature of this “disease”. Among others, I think borderline personality disorder could be present in some, and I’ll explain what leads me into thinking this.
In borderline personalities, swinging between adult-like and child-like behavior is uncontrollable. Adult behavior of the borderline crumbles suddenly and without apparent provocation into childish anger or tears.
Having a sensitive adult disintegrate into a raging, “abandoned” or rejecting child is quite unnerving. The flip-flop emotions of a borderline are where the personality disorder got its name: the borderline between childhood and adulthood, good and bad, all or nothing.
What is observed in the vast changes in mood, attitude and behaviour of borderline personalities is the shifting between the here and now and the past.
The past being totally unsafe and very frightening to re-live it brings out very regressed child-like and at times, violent raging behaviour in borderlines.
This is not to say that they are evil. They are not evil. They have been deeply wounded and left to emotionally fend for themselves in stages of development that require parenting and caretaking.
Somehow the difference in behaviour and presentation is some kind of experiment or something merely that is being inflicted on those around the borderline, almost as if just for the heck of it.
Borderline behaviour in all of its complexity stems from very deep and very real intrapsychic pain.
While this pain is the kind of pain that interferes with identity it is not about two distinct aspects of soul in competition with each other.
It is not about two souls engaging in on-going and inherent conflict with each other. It is about the borderline trying to integrate, in the big picture, the here and now with their past. Such behaviour is trauma based with its roots in protective dissociation.
Each of us, borderline or not, has inherently good and bad within him/herself. Life is not lived in black and white and this is the struggle for most borderlines, trying to find balance, the center, the grey that mixes the reality of both the black and the white.
To refer to borderlines or their behaviour in this black and white way is a disservice and unproductive for those around the borderline and for the borderline, as well.
Whether or not you think that the person with this disorder, is acting from a base of purely good or purely bad, or evil is a gross over-simplification of what is actually going on.
Rather than two aspects of self at war or in competition with each other borderlines are at war with a self that they do not yet know. The battle is between the false self and the authentic self. Neither aspect of self is all good or all bad.
There is nothing evil about having a personality disorder. If someone is unable to accept personal responsibility for him/herself and his/her behaviour then you have to ask yourself what you are doing allowing them to be in your life.
If you are not happy with a relationship or you are borderline and not happy with your life rather than try to simplify things in a derogatory manner it is much more helpful for all concerned if you realize what is truly going on for the borderline inside.
The reality that most borderlines are in a great deal of pain is not an excuse for poor or inappropriate behaviour. But, until the conflicts that each borderline must resolve in order to reclaim his/her life is dealt with, they will continue with the behaviors.
The persecutory misconceptions of morgie people (which I addressed in some other comments…”not diagnoses”, but just “my views”, as usual), and the associated “coming un-done” of some, (maybe existing in more than those who display it online), appears to be very suspsect of BPD.
I say this, also, because if morgie people have such a firm belief…in other words, if they have “a conviction” that they have such a thing as “morgellons disease”…
Well, we all know what a conviction is…
And when a person has a conviction — come hell or high water — we all know…
Nothing that anyone else says, or does, causes you to feel even the least bit threatened.
Kiss my bottom!!
abac68, perhaps you could try to address some specific issues? Any evidence?
1111 West 17th Street
Tulsa, Oklahoma 74107-1898
May 15, 2006
Re: Morgellons Disease
From: Randy S. Wymore, Ph.D., Department of Pharmacology & Physiology
Rhonda Casey, D.O., Department of Pediatrics
Oklahoma State University Center for Health Sciences
This letter concerns a patient population that manifests a particular set of symptoms we have encountered
with increasing frequency, and that OSU-CHS is actively researching. The condition has been labeled as
Morgellons Disease and it is unclear if this is a single disease or a multi-faceted syndrome. Until recently, most of
these patients have been grouped as a subset of the diagnosis of Delusions of Parasites (delusional parasitosis;
DOP). After obtaining careful patient histories and thorough physical exam, we have determined that Morgellons
patients have several important distinctions ruling out the diagnosis of DOP.
This population of patients frequently exhibit the following symptoms:
• Distinct and poorly healing skin lesions with unusually thick, membranous scarring upon eventual healing.
• Moderate to extreme pruritis at sites of lesions as well as un-erupted skin.
• Microscopic examination of these lesions will most often reveal the presence of unusual fibers, which may be
black, blue or red. These fibers, which many healthcare providers initially thought to be textile
contaminants, are often present in the deep tissue of biopsies obtained from unbroken skin of individuals
with this condition. Careful examination of these fibers further reveals that they are frequently associated
with hair follicles, and are definitely not textile in origin.
• Most of these patients suffer from a host of neurological symptoms which can vary in severity from mild to
severe. These neurological symptoms include peripheral tingling, paresthesias and varying degrees of motor
involvement which appear to progress.
• Intermittent cognitive and behavioral status changes are often observed and also seem to progress with the
severity of disease. This is often referred to as “brain fog” by the patient as they experience a waxing and
waning of this symptom.
• Laboratory findings in these patients are variable, but often reveal eosinophilia and elevated levels of
• Other symptoms of varying severity and frequency have been described, and are included in the attached
Morgellons patients differ from classical, delusional parasitosis patients in several areas. They do not respond to
antipsychotics, and new lesions continue to appear upon complete cessation of manual excoriation.
Due to the sensation of foreign material in their tissue, that has been described as sharp, stinging and/or splinterlike,
the patient may have discovered the fibers prior to seeking medical care, and may bring them to your office for
examination. Please do not assume that the patient’s problem is purely psychological based on this propensity.
Many of these patients may appear skeptical of traditional medical care due to frequent dismissal of their
symptoms in the past. The combination of suffering from a chronic disease with distressful symptoms and no known
cause or cure can cause some patients to appear anxious or agitated.
We encourage you to take the time to carefully interview any patient who may fall into this category, perform
any testing you may deem appropriate, and most importantly treat the patient with compassion and dignity.
Randy S. Wymore, Ph.D. Rhonda Casey, D.O.
Director of Research, Associate Professor of Pediatrics
Morgellons Research Foundation
Assistant Professor of Pharmacology
Oklahoma State University
Center for Health Sciences
1111 West 17th Steet
Tulsa, Oklahoma 74107-1898
Morgellons Information Line: (877) 599-7999
In mental health care, it seems the only options on how to view mental and emotional difficulties are:
1. blaming people for their problems or
2. attributing them to a biological disease
There’s another option. People have difficulties when their circumstances, or some combination of who they are and their experiences, trigger emotional pain or confusion severe enough to surpass their ability to cope.
It happens because the world is not ideal, and we, as humans, are not perfectly engineered for our environments.
Sometimes people make mistakes, behave stupidly, or act out of malice, and sometimes physical conditions affect thoughts and emotions, but in many cases, people have only a certain level of ability to survive emotionally, and experiences test and break that ability.
That’s when one needs help; not necessarily medicine or confinement, but empathy, compassion, and practical assistance meeting needs and thinking effectively.
I’ve read so much from some morgie people, citing certain things that take place while they’re at their doctors’ which really sound like nothing out of the ordinary.
It might be nice, “in a perfect world”, but I’m not sure that everyone goes to doctors with the expectancy of them showing sympathy, or having any physical contact during an office visit.
It seems that a psychologist would be more suitable to fill the expectations, of some, that aren’t met through other doctors, and that they could work together in the treatment of the patient. I don’t think they prescribe pills like psychiatrists.
most simply cannot fathom the ramifications of such a disclosure. The infectious agent causing this is caused by a stray target (nondisclosed) created by experimental research done under a C3 permit by a proteomics research center. In other words it is a man made creation which has escaped containment. This target was created for research into artificial skin, wound dressing as well as cancer research tools. This is a military issue of high caliber, enough so to be defended by many parties, hence all the conflicting reports and otherwise lack of any credible information. The microscopic images shown in the video found at http://www.crossinglines.net (follow the links) is completely out of my area of expertise, I am not a microbiologist. However the Macroscopic images shown and this agents interaction with host are EXACTLY the same thing I am able to show on my own body to anyone that will listen and would like to look. For photos of the fibers, follow these links.
for the picts showing the dissemination in skin follow these links.
Pictures of typical lesions
http://crossinglines.net/lesion%20photographs.htm series of slides.
Picture of the synthetic polymer showing random recombination.
http://crossinglines.net/photo_gallery.htm series of slides.
and finally the most common thing reported and seen by those suffering from this is the fibers seen outside the body. One can put fresh sparkling clean sheets on their bed, shower and scrub fanatically, go from shower to bed, then wake up to find these structures in bed with them. I am not kidding when I say these were not in the bed when you got in it. http://www.crossinglines.net/pic_of_moving_fuzz.jpg
The video compiled by a scientist in Europe can be viewed by following the links at http://www.crossinglines.net. If you are a scientist or research professional, please share your comments concerning what you are seeing in this, as I have said, only the macroscopic images mean anything to me and would love some qualified remarks concerning the microscopic images.
From what I understand the reasons for the lack of acknowledgement from the medical community is a political as can be. Once the uninfected general public becomes aware of the release of this thing into public space, reactions may become unpredictable. Also, the economic problems which will be sure to follow. Everything these days is genomic/ proteomic research related—from the paint on the door to the food on your plate. In fact, several hundred billion a year in the US alone. Also it appears that even though this seems to be a accidental release, this accident is being “nurtured” by big pharm with obvious goal of the need for lifelong suppressive therapy.
The video’s creators have also stated that this element is differentiating. Meaning it is the cause of several seemingly unrelated diseases. If a single pathogen is worth a billion dollars to the medical industry then this pathogen is worth 10’s of billions. This bug is a money maker and we are all at the mercy of the medical industry. The key word to concentrate on here is INDUSTRY. All industry is profit orientated and this should scare the bejeebbers out of you. Hence the lack of motivation to fund research into this disorder. It will without doubt prove that these industries focus primarily on the effects of disease and not the cause of them. To cure is not profitable, but to treat over and over again is. Look at the treatments HIV patients must take for life in order to stay alive.
A pathogen represents billions and to take a cause of disease away is a disaster for many.
More to follow, my damn fingers hurt and I stink at typing.