Morgellons Fact Check

Tall Cotton says:

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.

Tall Cotton

Smileykins says:

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.

Smileykins says:

Thanks for sharing that. People are nothing more than merely human, no matter who they are, or what title they wear.

Michael says:

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.

JeezeLouise says:

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”.

Smileykins says:

Anonymous sez:

smileykins,

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?

Michael says:

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.

Godshammer says:

God says its a way to control information.

Smileykins says:

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.

JeeezeLouise says:

The ‘advice’ they choose not to delete is dangerous and potentially deadly.

Tall Cotton says:

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.

Covered In Lumps says:

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.

http://lymebusters.proboards39.com/index.cgi?board=rash&action=display&thread=1144721187&page=2#1145018462

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).

Michael says:

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.

Covered In Lumps says:

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.

upnapishtim says:

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.

upnapishtim says:

jeeezelouise,

“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.

Smileykins says:

“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)

Tall Cotton says:

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.

Smileykins says:

upnapishtim,

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.

http://of-morgellons.blogspot.com/

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?

Thank you

Michael says:

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.

upnapishtim says:

Michael,

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.

Tall Cotton says:

Linda,

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.

Tall Cotton says:

P.S.

Don’t forget the pedialyte. Dehydrated sebum makes tiny, hard, wax-like beads. Getting rehydrated isn’t always as easy as it seems, either.

Smileykins says:

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.

Smileykins says:

This post has been removed by the author.

Tall Cotton says:

This post has been removed by the author.

Smileykins says:

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”

Upnapishtim said…

“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”.

upnapishtim says:

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.

Smileykins says:

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.

Smileykins says:

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.

Smileykins says:

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.

6:24 PM

Michael says:

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.

Smileykins says:

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.

Smileykins says:

This post has been removed by the author.

Michael says:

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.

Smileykins says:

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.

JeeezeLouise says:

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.

regards

whatsyouragenda says:

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
opposite?

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.

abac68 says:

Kiss my bottom!!

abac68 says:

YES
1111 West 17th Street
Tulsa, Oklahoma 74107-1898
918-582-1972
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
Tulsa, Oklahoma
Dear Practitioner,
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
Immunoglobin E.
• Other symptoms of varying severity and frequency have been described, and are included in the attached
case definition.
Continued…
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.
Sincerely,
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
email: morgellons@okstate.edu
Morgellons Information Line: (877) 599-7999
http://www.healthsciences.okstate.edu/morgellons/index.cfm

southcity says:

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.
http://www.crossinglines.net/Host%20pathogen%20interaction%201.jpg
http://www.crossinglines.net/Host%20pathogen%20interaction%202.jpg

for the picts showing the dissemination in skin follow these links.

http://www.crossinglines.net/dessemination%20in%20skin.jpg

http://www.crossinglines.net/dessemination%20in%20skin%202.jpg

http://www.crossinglines.net/dessemination%20in%20skin%203.jpg

http://www.crossinglines.net/dessemination%20in%20skin%204.jpg

Pictures of typical lesions
http://www.crossinglines.net/Typical%20lesions%20Random%20pattern.jpg
http://crossinglines.net/lesion%20photographs.htm series of slides.

Picture of the synthetic polymer showing random recombination.
http://crossinglines.net/quorum%20sensing%20organism%20part1%20HQ%20015_0001.jpg
http://crossinglines.net/photo_gallery.htm series of slides.

Culture
http://crossinglines.net/quorum%20sensing%20organism%20part1%20HQ%20017_0003.jpg

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.

Southcity