One of the problems with discussing Morgellons is that the argument tends to be polarized by the issue of mental illness. Inevitably, the people who believe they have Morgellons (“Morgellons sufferers”) will accuse their doctors and other skeptics of explaining away their symptoms with “delusions or parasitosis”, or some other mental disorder, and ignoring their physical symptoms.
In reality things are no so black and white. Let me try to clarify my position here, since I feel it’s been misinterpreted.
It is very clear that people with Morgellons do not all have the same problem. In fact the cases discussed on boards such as Lymebusters are very varied.
Some Morgellons sufferers might have a single physical condition. Some might have more that one.
Some Morgellons sufferers might have a single mental condition. Some might have more that one.
Some Morgellons sufferers might have physical conditions, but not mental conditions.
Some Morgellons sufferers might have mental conditions, but not physical conditions.
Some Morgellons sufferers might have both physical and mental conditions.
Let me be very clear here, my UNCHANGED position on this topic is:
I do not think that all Morgellons sufferers are mentally ill.
And just to emphasise this a little more, I’ve changed the word “and” in line 3 of my header to “and/or”.
Lesions are real, and there a number of things that can cause them, including many known diseases, mostly physical, some mental.
Fibers are real, and there a number of things that can cause them. But as yet, no known disease causes fibers to emerge from lesions. No credible evidence suggests that fibers are emerging from the skin.
Q. What makes you think that you have “morgellons disease”?
When I used to be a member of Lymebusters’ message board, naturally, asking such a question was completely out-of-the-question.
What has caused all the misconceptions and dangerous assumptions among people, completely taking for granted, somehow, that everyone has the same thing?
I made a roundabout attempt, not too long before I gave up and left, to see if I could, at least, find a starting point for frank discussion.
I’d had my own assumptions, for a while, based on the fact that since people were pleading so desperately for solutions that worked, that the best thing would be to actually know, exactly, just who had precisely what.
In the back and forth swappings of so many concoctions and home remedies, I wouldn’t really notice either party asking to be completely certain whether they had the same sets of circumstances.
I made a failed attempt to see if people would list their problems, for comparison, by posing a question asking what “they” were, that people were always professing to have killed, and yet, whatever “they” were, were always coming right back.
I had originally been under the assumption, upon my arrival at that message board, that the answer to my un-asked question at the top of my post, here, was…”fibers”. However, I’ve read, many times, that not everyone on morgie message boards has fibers.
One person replied, at the time, to answer my post about what “they” were, and why, if they were dead, “they” always returned. It really wasn’t the type of answer that I could understand, riddled with several other things in the best attempt at trying to enlighten me.
I could assume that I know just eaxctly what “they” are, but “they”, from back when I had been ill, were something indescribable at the time, until I regained my health.
There is one thing that I’ve seen quite a bit of talk about on there, and that is pertaining to a “film” on their skin. Yet, while I was there, nobody was interested in knowing anything (really “anything”), about balancing health, immunity, skin anatomy and its functions, and exfoliation. Many people mention a particular “morgie odor” that their skin has.
The constantly peeling off dead cells of the epidermis mix with the secretions of the sweat and sebaceous glands and the dust found on the skin to form a filthy layer on its surface. If not washed away the dirt begins to decompose emitting a foul smell. Functions of the skin are disturbed when it is dirty and it becomes more easily damaged. The release of antibacterial compounds decreases. Dirty skin is more prone to develop infections.
The skin supports its own ecosystems of microorganisms, including yeasts and bacteria, which cannot be removed by any amount of cleaning. In general these organisms keep one another in check and are part of a healthy skin. When the balance is disturbed, e.g., by antibiotics which kill bacteria, there may be an overgrowth and infection by yeasts. The skin is continuous with the inner epithelial lining of the body at the orifices, each of which supports its own complement of flora.
I know that morgie people bathe, but exfoliating, though, is another matter, entirely. That top layer may look clean on the outside, but there can be a ton of crap layered on it, and embedded within it.
And, what causes so many people to nonchalantly mention what serious conditions they do have (and those conditions totally cover the symptoms they have), and yet they ignore it all and attribute everything to “morgellons disease”?
Morgellons Muffins (serves 12 Morgies)
2 Misunderstood Biological Processes.
2 Forced Biological Processes (unusual preferred).
12 fl. oz. Paranoia & Fear (approx.).
1 Rejected doctor’s diagnosis (parsed).
3 Self-diagnoses.
2 Cups Suggestible Group Think.
2 Cups. Citizen Science.
8 fl. oz. Poor Reading Comprehension (approx.).
1/2 Cup. Exaggerations/Lies/Hidden Agendas (mixed).
Mix Misunderstood Biological Processes with Forced Biological Processes. Blend until you’re not sure what you’re looking at. Then pour in Paranoia and Fear until what you see looks really scary. Add rejected diagnosis, Self-diagnoses, and Suggestible Group Think. Blend until picture begins to develop. Slowly stir in Citizen Science adding Poor Reading Comprehension as necessary for smoothness. Pour mixture into muffin tins and sprinkle on Exaggerations/Lies/And Hidden Agendas to suit taste. Obcess over the project for 1 hour at 325 degrees and discuss until cool.
Tall Cotton
*PERFORATING DISORDERS*
Perforating disorders all have the common feature of perforation, also known as transepidermal elimination. Altered connective tissue component within the dermis, such as collagen or elastic fibers, are eliminated through the epidermis. The clinical lesions are often raised, hyperkeratotic to verrcuous nodules. Histologically, dermal elements are eliminated associated with collections of inflammatory cells at the dermal-epidermal junction. Sometimes serial sections of the tissue is needed to demonstrate the perforation. There are several well-defined clinical entities as well as cases of acquired perforation, usually secondary to chronic renal failure.
http://tinyurl.com/lw2kj
Please read, and scroll down and read all three of these internet links on the page
* Kyrle’s disease
* Perforating folliculitis
* Reactive perforating collagenosis
See also:
http://tinyurl.com/n4juz
Elastosis Perforans Serpiginosum
Pathophysiology: EPS may be a form of granulomatous inflammation that displays an unusual method for removing elastic tissue from the area of involvement.
Skin responds to threats to its integrity by foreign materials, such as bacteria, parasites, fungi, and misplaced native tissue elements (eg, hair), silica, beryllium, suture materials, through granulomatous inflammation.
The first stage of the granulomatous inflammation is the destruction of normal connective tissue. Then, an attack on the foreign material in the region ensues with waves of phagocytic histiocytes, often clumped into giant cells, moving in to engulf the foreign substances and debris. These phagocytic histiocytes carry away the foreign substances and debris, usually via vascular channels, but in the perforating diseases, via direct extrusion. The repair process follows close behind, with neovascularization and fibrosis. The duration of such a project is highly variable, often taking years to complete.
Also, I think this other skin disorder is relevant to some. Naturally, I’m not doing anything as dumb as “diagnosing anyone over the internet”.
http://tinyurl.com/oo8kz
Prurigo Nodularis
History:
* Patients are most often middle-aged to elderly.
* Patients with PN invariably complain of a long-standing history of severe, unremitting pruritus.
* Patients can point out specific sites where they began feeling itchy and where dark-colored nodules formed soon after.
* Mature nodules rarely increase or decrease in size; spontaneous resolution is even more rare.
* PN is usually bilaterally symmetric, with nodules that are either stable or increasing in number.
* The patient’s medical history may be significant for several conditions.
o Hepatic or renal dysfunction
o Local trauma or insult to the skin
o Infection
o HIV/immunodeficiency
o Anxiety or other psychiatric condition
* Patients may have no significant medical or psychiatric history.
* The patient’s history often reveals a long list of over-the-counter and/or prescribed medications (topical and oral), which usually have produced little or no relief of symptoms.
* Up to 80% of patients have a personal or family history of atopic dermatitis, asthma, or hay fever (compared with approximately 25% of the normal population).
Physical:
* Nodules or papules are 3-20 mm in diameter; they are discrete, scaly, generally symmetric, hyperpigmented or purpuric, and firm.
* Nodules and papules occur on the extensor surfaces of the arms, the legs, and sometimes the trunk.
* Lesions may show signs of excoriation with flat, umbilicated, or crusted top.
* Lesions may number from 1-2 to hundreds.
* The nodule pattern may be follicular.
* Nodule pattern may be follicular.
* On entering the examination room and while patients’ describe the locations of the lesions, patients may scratch or rub the lesions rather than pointing to them.
* Many patients appear very anxious, worried, or even obsessed with the nodules.
Tall Cotton and Smileykins both had kidney-related problems when we had symptoms of what has been given the name of “morgellons disease”, and I have noticed quite a few people on morgie message boards with decreased perspiration, kidney pain, as well as diminished urinary output.
I know whatever morgie people are experiencing is very illogical to them, but there are logical explanations, if only effective patient/doctor communication were to be established.
Tall Cotton – I think the information below will let the readers realise that you and your girlfriend are fruit loops and trouble makers.
Bugs Alive
unregistered user
Jul-25-03, 00:02 AM (GMT)
29. “High As I’ve Been”
In response to message #13
Dear BB,
If you thought it was Actinomycetes, you should have continued your research on that specific subject. Sure, the subject has been tossed around, but we’ve pretty much tossed them all around, and around, and around, like a merry-go-round. If there’s a next time, give your notes. Maybe I can beat Dee!
Thank you, Mary Morgellon.
I’m sorry about the pain you have carried. It wasn’t in vain. You did it! You did what you set out to do. You can do that. You’re the proof, and you’ll always be the proof. We don’t understand it all, but it wasn’t in vaim. Those who have fallen, have done so, so we can stand. We can stand. If we will, we can! If you ever need anything, and I can be a help, you call. I’ll be right there. That’s a promise!
Dee also posted information a long time ago about the actinomycete that causes a pink slime. As I type this message to you, this very instant, my keyboard is entirely covered with a thick layer of pink slime. It’s visibly pink, very sticky, and burns my flesh. It also floats up and get in my eyes. That’s one reason why I’m a winner today.
Thanks to Dee, and thanks to every one who has contributed. I know what I’ve got, today, and I know how to treat it. A couple of days ago I was a dead man!
Thank you, Lois! People like you make everything possible! You went to war, and made it fun. By the way, I’ve still got your ten pound fuzz ball! Don’t be surprized if he calls you and asks you to pick him up at the bus station.
I know what I have, today, and I know how to medicate it, and although I have a deep debt of gratitude, toward everyone on the Message Board, I have a very special thanks for a service given to us all, by a woman that I know has give herself, without reservation, not to win a race with people, but to win a race against time, and against a disease, that in time, would have killed us all, and some of us soon.
Dang, BB, you could pee on this parade and it aint stopping! And it wouldn’t even care. If you were to burst its bubble, or baloon, it would would keep on flyhing without a bubble, and without a baloon.
Remember? It’s Higher Bacteria!!!
Respectfully Yours,
Bugs Alive,
Michael – how is the Dermatology Practice going?
And just a little more for the readers –
Bugs Alive
unregistered user
Jul-24-03, 08:13 PM (GMT)
24. “The Balloon Flies”
In response to message #13
Hello Everyone,
We’ve been a little deeper into this jungle than most of you realize. We’ve certainly gone farther than we ever intended to go. We watch these fibers swim through the water, and shine a spotlight out the nose of the, “what should we call it?”, searching the bottow of the petri dish. We watch the shiny orbs hover about, as the figurines stare in fear and awe as lavendar and silvery orange spheres catch light and manipulate it.
Mankind has advanced a lot these last few decades with his eyes shut, but Monera hasn’t slept. Look at the cliffs, at all of their faces. You’ll see every ugly face the bacteria could mimic, and put on and wear, lining the walls of the cliffs, which are cliffs to them, in awe, watching the ones on the shining spheres play with electricity.
Hair from our heads was hollowed out and the tube was filled with a light catching oil, the hair was used as the pressure hull of a submarine, like I told you a long time ago. Monera is moving, watching. I watched them the day they removed the round heads from the “pseudo-super-filarial-nematoboat” and installed the type that Dee identified, the “Head of Goo”. I only beads in filarial, and at the tip end they were red, yellow, green, and sometimes blue, in that order. I didn’t know if it was a new head, or the prismatic hollow tube, breaking the colors into the colors of the rainbow. But I watched as a half dozen canister-like objects, containing red, yellow, and green, spheres, three in a row, in that order, like stoplights, headed for the side of the petri dish, after I squished the out of a hollow hair that I pulled from my head.
But Dee figured it out. And she showed me how this material we are saturated in “catches the light”. You’ll see the latest version of the head of the serpent in Dee’s photo album. Those arrowheads, on the tip of the hair, are the new heads of the pseudo-whatchamacallit.
I’ve been onboard their “pseudo-super-filarial-light-catching-nematoboat”,so to speak, and I promise you that it’s much, much more than the Pinta, Nina, and Santa Maria, all rolled into one. I’ve seen the passengers and crew, even the compartment where the store the “Goo”. But I did’t count the pilgrims. Had I done that, it would have taken many lifetimes.
But they’ve found the light catcher, whatever it is. Look at Dee’s album. Look at a specimen of your own, that been lying on a piece of paper a couple of days. You’ll see pastel spheres, and much construction taking place. The light-catching goo was the heart of the pony. Have you seen the pony? Let’s look at the Dancing Day Pony. Oh, I almost forgot, It’s a “Dang-Good-Day-To-Dance-Dancing-Day-Pony.”
If you can’t tell, I’m a little ticked off. It’s okat though. Look at Dee’s fiber photos. You’ll see a pony being constructed. At its heart is the light-catching material. His backbone is a laser, or a laser-like device, complete with the mirror at the end, to reflect the light back into the hollow tube. Yes it powers the pony, absolutely! How do I know? It’s a secret! Watch “them” ride. Watch the pony buck. See the the fire in the Pony’s heart. The orange picture was taken the day of his original completion. That’s his birthday picture. Of coarse he’s not really alive. He’s a machine. But he’s easy to love, if one has it in them.
Look at him buck. He bucks and bucks. Uh oh! What happened? He’s totally bucked up now. Can you see the sphere’s inside the pony that make him dance and help him buck. Or, did, at least? Do you see the ones that are trying to wreck his birthday party? Yes, you can see that they succeeded. He was murdered by one of the shiny orbs, the spheres that have Monera frozen in fear. We would be afraid too, but we are asleep. Though the lightnight bug and the glow worm have been around a long time, they didn’t manipulate it. But now it’s safe to say, “Electricity has come to Mayberry!”
Do you see the pony crying? Do him see him bleed?
Of coarse Actinomycosis has been discussed. We’ve let ourselve be literally “stuck” here so long, havn’t we, that we’ve “touched” on, and I do say “touched” on the subject, and discussed evrerything at least once. Dee posted material about the pink slime didn’t she. The pink slim is an actinomycete too. We’ve come close. We’ve all come close. But Dee took the crown! And I’m here to see that no one tries to steal it from her. The girl has worked extremely hard, and she has subjected herself to a lot of dangers that you don’t know about right now. She did it to help us all. Let’s see what her doctor says. I’m curious. Though I doesn’t much matter.
We know what it is. We know a lot more than that, things it’s quite dangerous to know. Look at the pictures. The pony is broken. The submarine now has a the light-catching machine in it’s core, like the one in the pony. It doesn’t take much imagination to see the pony. Do you remember Dee telling us that something was tying her hair into bows. At first she thought that it might be spiders. We’ll, they’re the framework in the pony. See them? They’re there, whether you do or not. They’re still there right now. I honestly almost cry when I look at those pictures. But I’m happy that we know the name of the disease and it’s pathogen. I’m also g
Michael – Can you not see that your only two dedicated followers suffer mental illness alone and never suffered symptoms of Morgellons Disease.
P.S. Stop DELETING posts.
abac68, what it is that has you, as well as other morgies, so afraid and so terribly threatened by two people such as Tall Cotton and Smileykins?
If you could only comprehend our stories on our blog, you, too, would understand just the same as any person with the capacity to.
We’ve already addressed what you’ve referred to here, and neither of us have any secrets.
Thank you for providing these illustrations of what it had been like, because we hadn’t thought to include that aspect in our blog.
We recovered and came to terms with what happened to us. I hope that for everyone, someday, whether you can do it the way we did, or through outside help through the medical community.
Smilykins – USA is not the only country in this world. In this country we do not pin the diagnosis of DOP (Delusions of Parasitosis) onto people suffering the symptoms of Morgellons Disease. Especially sufferers with NO past history of drug abuse.
You and tall cotton are BAD EGGS. There are thousands of people suffering a real disease. You and your boyfriend suffer from Schziophrenia. SO GO BLOW!
Please, abac68, get someone to read our blog for you.
I had never even heard of “morgellons disease” until three years after my bout with serious physical illness that made me see things in an unusual way, due to a toxic condition.
I never have been associated with NUSPA, and I am not that person known as “Dee”.
Get well.
Dear Brainless Twit (Smilykins) – I have read your story (I don’t need it explaining to me). As I said GO BLOW.
This is not a message board, so please take your exaggerated misunderstandings and grievances with me, here, as I have said to before, abac68.
http://of-morgellons.blogspot.com/
I don’t mean to sound rude, but you’re been blatantly exhibiting behavior that makes you appear to be very unstable. People tend to arrive at certain conclusions based on such things, so I encourage you to take your problems with Tall Cotton and me to our blog, again. Thank you.
NO
abac68,
It was a long hard climb coming out of that insane world. Three years is a long time. I appreciate the reminder of how far I came. You made an excellent choice in posting that on this thread, showing that the condition was both mental and physical. Good luck with your own recovery.
Tall Cotton
Hello Mary, Bugs, Michael. It appears as if abac68 is no fan. Nonetheless, your responses are much calmer. Good. I’m not in attacking mode, but do you see, Tall Cotton, how incredulous it is for some of us that you, who wrote those posts, now feel you are in a position to judge us? The audacity astounds. Enough of that.
I understand that you now believe that we suffer from some sort of illness, possibly physical, possibly mental, possibly none, possibly both. Honestly, Michael, you’re starting to sound a bit silly. Did you hear me when I said I was able to scratch large blue fuzz-balls from my legs in the presence of my disbelieving mother? Did you listen when I said that there was so much of this stuff that I had to wipe it onto a paper towel? I wasn’t on drugs, my mother wasn’t on drug–WE DON’T DO DRUGS. Neither of us are crazy; I can prove that too. So, what am I to think is going on with my body? Let’s not start talking about exfoliating now or I’ll be laughing all night. Please explain, how does that amount of dust or any other environmental contaminate hide on the skin of a woman who had just shaved her legs in the shower two hours earlier? Boy, if you could answer that one I might just be a convert.
Aherah – I think you misunderstood my post. I don’t “now believe” this – this is what I’ve always believed. I was was just spelling it out since people tend to think it’s a black or white situation.
You also fail to understand that it’s not one thing. What YOU personally have is a unique set of symptoms that your doctor has failed to cure you of. How does this mean you have the same Morgellons as all those other people with different symptoms?
What symptoms do you share with Anthill? Don’t you differ more than you coincide? What’s the real think that links you to “Morgellons”?
What you have is real. I’ve no idea what it is. Your accounts of fibers coming off your skin sound interesting, and should be easily verifiable with a video camera. Gather some real evidence, perform experiments, draw conclusions based on evidence.
can someone help me, i think i have morgellons. i am itchy, but only sometimes…most of the time its just crawling feeling and burrowing sensations, sometimes it feels like something is twitching under my skin. the feelings go away for a few hours when i take a shower, but it comes right back.
i am at the point where i dont want to beleive there is something wrong with me, because i must admit i am a little scared. i get panic attacks about sometimes, by myself in my room from worrying over and over about it, it consumes my thoughts through out the day, to the point that i cant function like i used to because i am distracted.
what is wrong with me? i have no sores or open wounds or anything like that, my skins is intact…excpet for sometimes if i scratch it but that goes away in a week.
the thing that bothers me a lot is the crawling feeling in my nose, ears, and the skin on my face.
my doctor says i have multiple indoor alergies, and to stop worrying. one time i i have a wound on my arm, i think it was a pimple that i poped, but it didnt heal for a long time and one day i found 2 pieces of hair, that looked like human hair but they were blue not black. i thought maybe it came from the envirorment, but it looked real weird, 2 of them right next to each other like they were arms hairs but very short and blue.
am i crazy, am i going insane, do i have DOP?? i dont want to beleive i have morgellons. but weird things are happening to my skin, sometimes i am all paranoid about it and think its morgellons…sometimes i think its my mind playing tricks on me. it seems like i have DOP, because i cant stop thinking over and over about it, but the feelings on my skins feel so very real.
what is happening to me? i find myself avoiding the people who care about me, friends, family…because i dont know what is wrong with me and i dont want to hurt them.
-guest101
can someone help me, i think i have morgellons. i am itchy, but only sometimes…most of the time its just crawling feeling and burrowing sensations, sometimes it feels like something is twitching under my skin. the feelings go away for a few hours when i take a shower, but it comes right back.
i am at the point where i dont want to beleive there is something wrong with me, because i must admit i am a little scared. i get panic attacks about sometimes, by myself in my room from worrying over and over about it, it consumes my thoughts through out the day, to the point that i cant function like i used to because i am distracted.
what is wrong with me? i have no sores or open wounds or anything like that, my skins is intact…excpet for sometimes if i scratch it but that goes away in a week.
the thing that bothers me a lot is the crawling feeling in my nose, ears, and the skin on my face.
my doctor says i have multiple indoor alergies, and to stop worrying. one time i i have a wound on my arm, i think it was a pimple that i poped, but it didnt heal for a long time and one day i found 2 pieces of hair, that looked like human hair but they were blue not black. i thought maybe it came from the envirorment, but it looked real weird, 2 of them right next to each other like they were arms hairs but very short and blue.
am i crazy, am i going insane, do i have DOP?? i dont want to beleive i have morgellons. but weird things are happening to my skin, sometimes i am all paranoid about it and think its morgellons…sometimes i think its my mind playing tricks on me. it seems like i have DOP, because i cant stop thinking over and over about it, but the feelings on my skins feel so very real.
what is happening to me?
-guest101
also, the blue hairs i was talking about, they were in the pop pimple thingie on my arm, shotting straight upwards like they were coming from my pores. =[ i took them out with tweezers and freaked out. HELP!
Guest 510,
I’m very sorry you’re having such a terible time. Do yourself a big favor, and go back to see your doctor who told you that you “have multiple indoor alergies, and to stop worrying”.
Tell your doctor that it was far easier for them to recommend that to you, than it is for you to accomplish, and that you need to have something for anxiety.
If you have any symptoms of diabetes, like increased thirst, or any sores that are slow to heal, or any urinary tract problems, those things need to be addressed with your doctor, unless you know that the indoor skin allergies is the only physical health problem you’re having.
While waiting to see if anxiety medication helps to relax your fears and concerns, don’t read or listen to anymore about the thing that’s been called “morgellons disease”.
After a couple of weeks pass, if you’re still feeling anxious, call and tell your doctor that the medication hasn’t helped yet, and the dosage can be increased at regular intervals until you begin to feel better.
I too have skin allergies, to all sorts of things, and it takes many years to learn how to live with it. It’s more a process of elimination and the avoidance of triggers, than it is anything else.
Good luck. You’ll be just fine, as long as you work with your doctor. I presume they assisted you with what to do for skin allergies. If not, ask for suggestions, and treatment, to make it easier for you to manage them.
By the way, it just sounds like something that you’d been unaware of, penetrated the skin on your arm, and it caused a little infectious spot to form. That just means your immune system was working to rid you of it, which is perfectly normal and good!!!
Smileykins.
Am I right in thinking you once
‘thought’ you had this disease?
And now you ‘think’ you don’t
have it?
Just how far do you think this
road to Damascus will take you?
Hello again Marg,
“What YOU personally have is a unique set of symptoms that your doctor has failed to cure you of. How does this mean you have the same Morgellons as all those other people with different symptoms.”
You assume that I have divulged all that I have experienced since the initial onset in 1992; I haven’t. I do believe that Ant and I share a disorder/disease/syndrome. I think it manifests itself in Ant different than me as might the flu if we both got the same bug. In most diseases with their list of symptoms, it is usually stated that the sufferer may have one or more symptom; they don’t necessarily have to have then all. Ant has one set, I another. There are commonalities that I won’t go into here lest guest510 continue on his/her freak-out. I know that, for me, there seems to be nerve involvement which I plan to discuss with my doctor. You’ll just have to trust me to know by body enough to that the two (fuzz,etc) is related to what I beleive to be a central nervous system issue. It was after I recognized that I was having CNS problems that I learned that this is yet another commonality among Morgellons sufferers (MS/ALS). I’m not trying to diagnose myself–it’s just difficult to not be curious about one’s body is doing when it is acting unusual.
My symptoms may be “unique,” but I’ve come across more than a couple (MRF 4,000+ families) people who have errily similiar symptoms. There are times when I read someone describe something on the board, and it is as if they were reading my mind. For example, after my fuzz-scratching leg incident, my flesh felt extremely dry. I couldn’t put a word to it, until I read someone say that they felt like a honeycomb. Yes, my flesh felt honeycomb-like, full of holes, airy. Now, I realize that I’ve just given you all more fodder for your fun, but it is a very real experience. No joke.
Here’s where I may be delusional. I have the bouts with “brain fog” that I equate to the times I was outrageously tired when pregnant, but I don’t have chronic fatigue syndrome. I would like to think that I can eat-right and exercise my body out of this problem. I pray that I can do that for my kids too. I really want to lick this thing because I enjoy life. I’m not done yet.
Does this make any sense to you?
Take Care,
Aherah
Aherah, that does indeed make sense. Your problems are obviously real.
What does not make sense is why people are so convinced that there is a distinct disease called “Morgellons” with a total lack of concrete evidence.
I can understand you feeling some of your symptoms are the same as with other people – but there are so many things different as well. What say if two people had different diseases – one had flu, and one had inhalation anthrax. Both would have many symptoms in common – would they be reasonable to assume they have the same thing?
Oh my my my, how I am enjoying the response of Abac. The downward spiral of “read this convoluted post and you will SEE!” to “go blow.”
Also, “we’re not crazy, but you’re fruit loops!” Did you get that from your middle school child? Very clever.
Talk about getting posts deleted. Offer a question, a nice post regarding DP, and what happens on Lymebusters? NUSPA? NPA? “delete delete delete.”
Quid pro quo.
I am another faithful reader, so there’s at least three. You make four. Nice to have you in our company. 🙂
There were more of us, but now there are no more anonymous comments. So. I had to make an account. Believe me, there are more than three.
Cheers, mate.
I’m sure my readership is approaching the double digits by now :).
For the record – I’ve only deleted posts that have degenerated into name-calling arguments and threats of violence. If people want to discuss the matter at hand, then they can say whatever they like.
Threats of violence? No… and could this deter people from wanting to “help” folks with alleged “Morgellons”?
“I can understand you feeling some of your symptoms are the same as with other people – but there are so many things different as well. What say if two people had different diseases – one had flu, and one had inhalation anthrax. Both would have many symptoms in common – would they be reasonable to assume they have the same thing?”
Among the symptoms of Morgellons that make it “unique,” as you termed it, are the fiber/fuzz factor. While it is possible that Morgellons sufferers may have any variety of illness totally unrelated to Morgellons and mistakenly think that it is a part of the disease (i.e. swelling, crawling–could be diabetes), the distinguishing factor is that they all claim to have fuzz/fibers emerging from their skin and/or lesions. The first time I went to my doctor with my “samples” of fuzz, I expected that he would know what it meant. I expected that I had provided him with the information necessary to finally make the correct diagnosis. He didn’t even diagnose me as dop. He, like you, decided that I was mistaken about what I was seeing. That’s one hell of a mistake to have lasted this long (fourteen years).
Do the flu person and the anthrax person have a common unique symptom too? Do they have a symptom that defies classification? If so, maybe they have neither the flu nor anthrax poisoning. How will we ever know until it is investigated?
Take Care,
Aherah
“What does not make sense is why people are so convinced that there is a distinct disease called “Morgellons” with a total lack of concrete evidence.”
We obviously can’t provide concrete evidence where none has ever been sought. Actually, people have been bringing their concrete evidence to their doctors for many years–it all ends up in the circular file. You should be very happy that someone (CDC?) might just make an attempt at providing that concrete evidence. Thank God you will finally have your opportunity to prove them, me, wrong.
Aherah, you sound like a very reasonable person, and it seems like you have a fairly good grasp on your situation. I’ve no idea what you have or do not have. I’m not interested in “proving you wrong”. I’m really not after proving anyone wrong. What I’m really interested in is taking a scientific look at claims that lack evidence.
Maybe your fibers are really coming out of your skin. But how can you explain that something so dramatic, and new to medicine, has been going on for fourteen years, and no doctor has ever been able to see it? Fibers in themselves are not evidence. Fibers coming from the skin are evidence. Why has no doctor ever seen this happen?
First of all, let me get something straight. Neither Smileykins or I are barred from lymebusters. We withdrew our memberships voluntarily. We can post there if we choose to, but we choose not to. We tried to help the others onto the pathway to recovery, but our suggestions were ignored. Some of our words were twisted and ridiculed. Some of our posts were deleted. But we have something that very few of the “believers” have. They have been there, but we have been there and back.
But, did I have what some of you have. I don’t know. I do know this. I had light blue fibers surfacing all over my chest after showering. I had long transparent fibers shooting out of my face. I found a fluorescent hair on my vanity that was the color of the head on a purple grackle. I picked plastic-like shards of material out of my skin. Some were like needles. And, no, I wasn’t always under the influence of drugs when I had these experiences. But one isn’t suppose to recover from “Morgellons”. One isn’t suppose to even hint that some experiences, wilder ones than these, were even in part, delusional.
The human immune system is an amazing thing. It may not always be able to accomplish the job, but one never knows until it is set in order and allowed to do its job. That isn’t done by continuing to put toxic substances into the body. It requires that the kidneys function properly and that the skin is kept clean. Yes, it must be kept exfoliated so that the toxins can be eliminated. Some of these fibers are toxins. Some are alternate cellular energy pigments. Some are industrial. You don’t know which ones are which. Leave them alone. Treat the skin properly and it will expel the ones that need to come out.
There’s one last thing. I am not the enemy. I sincerely hope that each and every one that is having health problems recovers.
Tall Cotton
“Fibers in themselves are not evidence. Fibers coming from the skin are evidence. Why has no doctor ever seen this happen?”
I always appreciate questions that allow me to explain what otherwise sounds incredulous. When I first started getting symptoms, I had a whole body severe allergic reaction. I thought I was having problems with something in my workplace environment (refurbished 5 star hotel) because the symptoms always got worse when I was at work. I went to an allergist–they found nothing. I remained miserable and perplexed. My doctor decided to treat me for scabies. When I would apply the medication to the itchy areas of my skin, I would see blue/black fibers emerge, over, and over, and over again. It seemed strange, so I brought them to my doc (you know the rest of that one). I ended-up quitting my job. Since I had no job, I no longer had medical insurance, so I couldn’t really go to doctors anymore. I had heard of people having severe allergic reactions to asbestos in refurbished buildings when the asbestos remained in the air. I accepted that as an explanation for the swelling and the fibers, although I couldn’t quite figure out why or how they would be coming out of my skin. When I left my job, the swelling did get better; the fibers have remained to this day but they were always insignificant. I could ignore them or tell myself, like you, it was just “dust.” I saw no need to go to doctors about this anymore since I already knew they were clueless.
In 2004 everything changed. I started swelling again; my son (then 3) and daughter (then 11mo) started getting rashes. I relived the whole bloody nightmare all over again, only this time it was in/on my kids. If ever there was a time I considered taking my life…no help from the doctors…alone…what is this thing…obviously it wasn’t asbestos. What I had been able to ignore or dismiss, as people with minor illnesses often do, had blown-up in my face in a very big way. Today my symptoms aren’t minor. I don’t know precisely when I can produce fibery masses to the extent I did in my mothers presence, so I don’t know that I can “perform on demand” for a doctor. What I could show him/her are the minor small fragments of fibers that are with me all of the time–they can and probably would dismiss it as dust, like you. In addition, I feel a bit traumatized by doctors. They hadn’t always been courteous or even respectful. A child may learn not to touch the stove by burning his hand on it; I’ve been burned by doctors a few too many times already. The only thing I know for sure is that the fibers are related to something that is real, it has been with me for a long time, and for the sake of my kids, I can’t ignore it anymore.
I see myself as a healthy person with something strange going on. I believe that my overall good health is what kept this thing in check for so long. Then again, I wonder how a healthy person manages to get something like this to begin with. I should play lotto with these odds, eh? I know that it all sounds so strange, but that does not necessarily mean that it isn’t real. I imagine that AIDS sounded pretty weird when it first materialized too.
Now, I know that I’ve confided in you on more than one occasion with you as a different character, Michael. You don’t have many choices here. Either you
1. believe that I am a nut who is seeing things
2. believe that I am misinterpreting what I see and feel
3. believe that I have some sort of physical ailment that is not related to what others term as “Morgellons” but that it too has fibers as a key element
4. you fill-in the blank
I do believe that you are perusing this hobby to discredit people like me, for whatever reasons. I’m just here to offer my story to some in your audience that might want to better understand an experience of one who believes they have Morgellons. You and I both know I put myself way out there by doing so. So have at it–laugh it up. I’ll be on vacation for a while anyways.
Take Care,
Aherah
I’m not trying to “discredit” people. Just because I don’t share your conviction does not mean I’m some kind of opponent. I seek the truth – or as close as we can get with a scientific degree of certainty.
I really don’t know what illness you have, or what you don’t have.
I hope you can find a good doctor some day soon.
“I seek the truth – or as close as we can get with a scientific degree of certainty.”
As do I. The difference is, I can’t prove it; I’ve only been able to experience it. I alone cannot provide scientific proof; thus, I need the MRF. There’s no lack of scientists in my family either–they had been my doubting Michael. Watching my experience, they have had to admit that there is still much to learn. I know that we bright, science-minded, logic-driven Americans don’t have it ALL figured out yet, though we may be damn good most of the time. We are a society infected with hybris (hubris), just like the crew of the mighty Titanic, but I am the one drowning.
C’est la vie.
Aherah
WHATSYOURAGENDA:
I invite you to take personal matters to my blog, same as I have others, but hopefully this will clear things up for everyone who’s fixated on either me, or my views. This is some interesting behavior that’s been happening here.
I had some bizarre symptoms, due to serious physical health problems in 2002. I got over it in two months, because I had to.
Three years went by. One night, my adult child woke me up with a phone call to turn on a radio talk show. They were talking about a bizarre “disease” that sounded just like what I had experienced. Listeners were directed to a website. I discovered a message board there.
The first person I encountered in February 2005, at The Morgellons Research Foundation/Lymebusters message board was Linda/Aherah/Upnapishtim.
When I said that I had attributed my ordeal from three years earlier to hallucinations from passing kidney stones (which I had just recently discovered that I had, so it made perfect sense as a major contributing factor back then), that, “NO”, I was incorrect, because my symptoms matched all the people there.
She’d said it was a real disease called “morgellons disease”, just like I’d just heard on the radio when my kid called and woke me up to tune into it.
I became a member of that message board for about six months, telling what I had gone through, in hindsight, and also explaining that I could reproduce the not-quite-as-severe symptoms, at random, because I had experimented, since, to understand just what was going on with my body and my skin.
I had not thought of fibers as anything unusual, having been accustomed to the fact that fibers were normal, all of my life, although not in such excess amounts as when I had been ill in 2002.
I found out very quickly that I wasn’t exactly on your average “health-support” message board. Things were talked about, dwelled upon, and advised, for some seemingly obvious reasons, founded in misunderstandings of all sizes, shapes and colors, to maintain a bad state of health, rather than people seeming to be able to offer, and accept, any positive “health support” to get out of any situations they had.
For me, dehydration + heat rash + fever + kidney stones, resulted in DELUSIONS.
I’d had all the classic “morgie-thingys”; creepy lesions, fibers, cocoon-like things, larval-like things, bugs, crystals, rocks, glitter, hairs, goo, black tar…yes, I had the whole nine yards, of what has been touted as being something called “morgellons disease”.
Long before becoming ill like I did in 2002, I just so happen to also have some of those things Mary Leitao comprised and included in her ludicrous case defintion, too. I’ve got musculoskeletal problems, nerve damage, fibromyalgia, chronic fatigue problems, digestive problems, autoimmune problems. I still have them. They aren’t anything related to what she made up to be “morgellons disease”.
Luckily, I don’t have those cognitive difficulties or emotional/behavioral disorders included in her list.
I can be an ass, because I’m opinionated, but I generally know where to mind my Ps-and-Qs.
We can see how several “naysayers” have reacted to my opinions, and to my honesty about having had delusions during a two month bout of ill health several years ago. I trust that you probably feel the same way, wishing very hard to think I was either “on drugs” or that I just happen to be “crazy”.
None of those people who think they have “morgellons disease” knows anything about who really has what. They aren’t even interested, with a geniune passion of interest, in doing real, proven health balancing measures that would benefit anybody. Dare say that you survived such symptoms as many of them do report, and way too often, many get mad and say, “Then be happy, and go on and leave us alone, if you’re well”.
Really cool “health support” message board, huh? They want to wallow in it!!! No doubt, some people had missed that I’d given my accounts of things in hindsight, but there was no way to break through the many barriers of thinking, with anyone there, no matter what, with all the cognitive difficulties they have.
While I was posting on Lymebusters’ message board, I’d commented that what I had seen back while I’d been sick in 2002, did not seem, to me, to be any type of hallucinations at the time it happened, citing openly, for comparison, that I had participated in the use of recreational drugs in high school, 34 long years ago.
Someone misinterpretted that right away (but that’s par for the course, there), congratulating me for accomplishing the difficult task of kicking my drug addiction. I hadn’t said that, but everyone with “morgellons” comprehension is so off.
I wouldn’t mention that, anywhere, if I were ashamed of it. I didn’t state anything about ever having used recreational drugs from that long ago, in my story on Tall Cotton’s and my blog, because it has no relevance. I’m not a fake, holier than thou, Christian, but I sure don’t drink or do drugs of any type.
With Tall Cotton and I having already spoken openly about ourselves, the defamation efforts directed at us here are only purposeful in assisting to reveal even more of the pathological processes at play in “morgellons victims” minds. Truth doesn’t fear, because truth has nothing to hide.
If morgie people only just knew how to relax, calm down, and think. Except, they don’t. I have no “agenda”. I am just doing what all people have a God given right to do, in stating my opinions, and telling my own truths.
All the particular people who have gotten it into their heads that I have ever singled them out, with any generalizations that I’ve ever made, are just very mixed up and confused to begin with. I was accustomed to that communication block as a member of their message boards, and finally had enough to throw in the towel.
The extremes in behavior that’ve been displayed here, proves that it’s very damaging to the welfare of morgies to subject themselves to spending any time reading Michael’ blog.
Nobody on here is trying to change the minds of anyone that thinks they have “morgellons”, just like Michael has repeatedly said.
There are those of us who like people to seek truths, and to make wise choices for themselves, provided they’re equipped to do so
Now, has all that I’ve said cleared it up as to what my “agenda” is? Do you fail seeing the absurdity in thinking that anyone here needs to provide proof of credentials in order to enjoy our right to the freedom of speech?
How much time and energy have any morgie people devoted towards scrutinizing the MRF, how it was founded, and why?
I’m a morgie believer’s worst nightmare, and I’ve always known it. I don’t like people being blinded to things
….things like taking care of their real health matters, and those of their families’.
I too, want everyone well, but not those who don’t want it themselves, as long as no pets and small children are involved, and especially not for those who are looking, as hard as they can, for reasons to believe they have “morgellons disease”.
Believers need to stand steadfast, and stop concerning themselves with anyone else’s opinions on the matter, lest we all think you have doubts concerning its existence. So chill out, already. Your answers are going to be forthcoming.
Mary/adapted/smileykins,
Could you summarize? You just write too much for me.
Sorry,
Aherah
You aren’t my personal responsibility Aherah.
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
Southcity,
Was it not the year 2000 that this biological breach was to have occurred in the C3 lab? Where did the previous “sufferers” get their morgellons? Tam-Tam sounds like another schizophrenic to me.
Tall Cotton
Southcity, you can no more convince us, here, than we would ever dare consider thinking we could ever change your mind. For there to even be an audience of “believers”, to begin with, frequenting this blog, it’s misfortunate in how upsetting it is to them. Michael stated a short time after creating this forum, that it was to educate and inform, and, hopefully, deter anyone who’s just now hearing of morgellons disease from falling into that abyss.
Until now, there has been nothing to refute it, and it’s been long overdue.
I’m going to make this simple, with a quote from you. “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.”
Southcity, I know. You aren’t hearing me though. I KNOW.
God knows that the account of our experiences on Tall Cotton’s and my blog is too long as it is, but it’s a mere summary, with both of us having left details unaddressed.
Poor Greg thinks we ate and drank water and got all better, but I can’t help it that all the times I posted as Adapted on Lymebusters that he didn’t see all the rest.
Mental Disorders:
Covers a wide range of illnesses, and of course, I’m including all the other physical conditions people get that leads to dermatological conditions. Plus specifically, some mental disorders can lead to a diagnosis of DOP, as well as some resulting in neurotic excoriations and compulsive skin picking.
Physical Disorders:
Covers a wide range of illnesses, but some possible things that people could easily be unaware of, and have in common:
Anemia, dehydration, digestive disturbances, urinary tract infections, autoimmune diseases
*Setting aside people’s known illnesses, because being in full possession of our faculties, we all acknowledge what we have, and we know their associated symptoms…
Many may have adult-onset metabolic diseases
Many may know their health histories, but some may not
By process of elimination, let’s set aside the mental health category.
Let’s turn back time now, and suppose that everyone who thinks that they have symptoms of “morgellons disease”, has yet to hear the mention of its name.
For people to find their way back, they have to go back to where they came from.
Remember now, we’re only concerning ourselves with people who are in full possession of their mental capacities.
Step One:
Something has taken place in the skin, causing the histamine reaction. How does each individual respond, as a result?
1. they know it’s a normal occurence
2. they don’t know it’s a normal occurence
It’s no secret that some people think it’s odd to have crawling, biting, stinging, itching sensations, and that seems to be a major precipitating factor in the series of a long chain of misunderstood events.
Has anyone gone to a doctor at this stage, and said something odd?
Step Two:
The itch/scratch cycle is set into motion, compromising the intregrity of the protective layer of skin.
The histamine reaction was triggered by one of two things:
1. Something making physical contact with skin
2. An underlying, unsuspected, physical condition (including food and drug allergies)
In one way or another, it’s safe to assume one finds themselves driven to a point of distraction, when they’re itching all of the time and trying to eliminate the source of their allergy.
*What about the set of people that genuinely think something live, that’s invisible, is crawling on them, biting and stinging???
Have they often gone to doctors and said something odd?
Step Three:
The next thing people will find, is that they have oozing, crusting, areas of skin, as a result of all the scratching. This creates a loss of bodily fluids, so more water needs to be consumed to help aid the healing process. If not, a person will be in a state of dehydration, and dehydration, alone, causes dry, itchy skin. Not good, because the itching is already severe.
Has anyone gone to a doctor at this stage and said, or done, anything odd?
*Bear in mind, for the sake of argument we are only concerning ourselves with people who don’t fall into the category of having a mental disorder, so as not to offend anyone.
*People may have discovered that due to their scratching, things were coming off of, and out of, their skin which puzzled them. Among particles of dead cellular components, there are fibers, and other various artifacts exiting their skin. Of course, there would be, and there should be, if they have caused damage from scratching off their protective surface layer.
*Add that element of misunderstanding, to the very first one.
Step Four:
With the protective skin being compromised, it’s now vulnerable to infection. Anything making contact with it now, illicits an overzealous reaction from our immune system, and this is all made worse, if we’re dehydrated, worse if we’re anemic. Big time trouble can now ensue, even with the risk our own normally friendly skin flora entering the breaks and causing serious systemic infections.
*When dermal tissue is exposed, that’s where all of our connective fibers are, which hold the epidermis and the underlying dermis together. Sweat glands, sebaceous glands, capillaries, nerve fibers, are all in this layer of skin, as well as other cellular components.
Has anyone gone to a doctor at this stage and said, or done, anything odd?
Plenty of water to maintain full kidney function to assist in toxins being eliminated, and iron-rich, oxygen-carrying red blood cells are crucial for healing to occur.
When biological processes are out of balance, that also covers our electrical and chemical processes being way out of balance too.
Being ill on the inside, shows up in our skin. It is a toxin-elimating organ, as well as our protective barrier to the outside world.
*How do sane people, though, discount their doctors, and get set on a course to “kill something” that is just their own bodies’ immune reactions? How do they fall for a lie, instead?
Many, if they survive, among other things they’ve done to wreck their health, are making themselves future liver transplant recipients. But no, they’ll not make it that far, as long as they beleive in “morgellons disease”.
I’ll stop here. I don’t know who has what, what their situations were, and are, and I don’t know where each person is when they take such wrong turns, getting so far off course. It sure SEEMS to be the progression of A LOT of mix-ups stemming from the initial sensations in their skin, based on all the general things I’ve garnered. All I know, is there is no such thing as “morgellons disease”.
Mary Leitao is suffering from the same “MISUNDERSTANDINGS”, in thinking her childrens’ skin conditions are something unique and mysterious, which resulted in leading her onto a treacherous path involving the decline of a whole lot of innocent people, who already had enough problems.
When antibiotics are taken inappropriately, the resistant microorganisms that a person creates are a threat not only to them, but also to their families and communities. With frequent antibiotic use, resistant organisms persist and become widely established over time. These resistant organisms can cause new and hard-to-treat infections, even in people who haven’t abused antibiotics.
Responsibility in using antibiotics, unlike almost any other medicines we might take, extends far beyond our reach. Responsible antibiotic use protects the health of our families, our neighbors and communities, and ultimately the global community, too.
These “misunderstandings” could be creating a lot of “drug-resistant” super pathogens. We already have MRSA to try to contend with.
THAT is what will affect us all in the future, not some mythical disease from 400 years ago, making “sane” people think a plague has been unleashed from a lab somewhere.
Southcity, you said…
“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.”
Smileykins says…
OMG. It hasn’t been that long ago that HIV patients progressed into full-blown AIDS and died!!!
Those live sustaining drugs they have are nothing short of a miracle, man!!!
Smileykins, you say:
“Many, if they survive, among other things they’ve done to wreck their health, are making themselves future liver transplant recipients. But no, they’ll not make it that far, as long as they beleive in “morgellons disease”.”
In fact, one of the earliest symptoms of liver failure is chronic generalized itching. I wonder how many already are, in fact, in undiagnosed liver failure because any and all itching can only be a Morgellons’ symptom – so why have liver function tested?
Yes, you are so right, JeezeLouise. The only beast of “morgellons disease” is the occult, obscured, and unaddressed, health condition(s) within each person who thinks they have it.
It’s impossible to sort out everything about them, other than the one geniune thing they have in common. They’ve all got such cognitive dysfunction, and it’s such a shame. I think every single one of them suffers from an injured psyche, too, in varying degrees.
The morgie people’s general views on issues of mental health as being something so cut-and-dry as to either being sane, or insane, is so archaic.
For the life of me, I don’t know how anyone with late stage lyme disease, that is well versed on the topic, as well as some other reported illnesses I’ve seen mentioned, can deny the neuropsychosis that is often associated with it, either. I suppose it would be a very difficult thing to consider, though, and maybe even impossible to.
Aside from that, though, every one of their abilities to rationalize, when it comes to “morgellons”, which is obviously the most major, all consuming, thing in many of their lives, has run off into the ditch with them somewhere along the way.
I have fibromyalgia “brain fog”, but through mental exercises, it doesn’t have to be succumbed to. Just harping on “brain fog” all the time, morgie people are reinforcing it into their psyches that their brains don’t have to work well anymore.
Some probably had a serious emotional/behavioral/personality disorder since before they developed a skin problem, and long before they ever heard of this made up disease.
Others have allergies, not understanding that there is nothing crawling on them, and that it isn’t “their morgies getting all stirred” up when they come into contact with triggers.
There are plenty of others, based on what they’ve reported, who have diseases and disorders that would completely account for their cutaneous manifestations, as well as their other physical symptoms.
There are those who probably have quite serious bacterial infections, too, as well as fungal infections, that they have done all the wrong things for.
Worms? I ain’t even going there.
We all know there are plenty of them with undiagnosed, underlying, illnesses that are going undetected because when they have gone to doctors, they have absolutely no effective patient-doctor communication skills.
They use up that precious and limited amount of time saying and doing the wrong things. Doctors aren’t mind-readers, and they certainly don’t have time to waste.
It’s so odd that so many don’t realize that doctors are trained and skilled in observing patient presentation, which includes special training in observing their demeanor.
It’s so odd that they think people can go in and demand tests when there is no basis for it. In my experince with doctors, in the office setting, I’ve never been refused any valid tests I’ve suggested, but I’ve never suggested anything other than valid ones.
This ridiculously heinous “morgellons disease” is not something that isn’t in the medical textbooks, that doctors don’t know about, because it’s some new and unique plague like all these people want to think it is. Doctors and “big pharma” are not in on it, either, as some others think.
They’re ill to begin with, for whatever major, or minor reasons, and think that their own cellular debris, environmental debris, and their own connective tissue fibers, are something to be feared!!
Too many of them think they have to “kill them”, and that “they”, in turn, are leading to their ultimate demise.
They want us to know that something is genuinely going on with them and that they aren’t “crazy”. All the while, we KNOW something is wrong with them, most assuredly!!
I was there myself, one time, minus having heard of “morgellons disease”, thank God!! Once I restored health to my body (which was hard), the response that I got was that all those occurences ceased. Then, what had happened, and why it had happened, became clear.
Other than the cutaneous manifestations, in so many ways I wasn’t like these people, nor was Tall Cotton. They’re lost, and I really know of no other word to sum it up. For a while, we were in an unfamiliar place too, but we fought our way back.
I’ve read accounts on message boards about how helpful Mary Leitao has been when people who think they have “her disease” have called her up.
She’s given them the names, addresses, and telephone numbers, of all the health officials for their area and instructed them to contact all of them, immediately, as well as their state and local government representives.
That was sickening enough to see, but look at this declaration from someone who is ill, and couldn’t effectively communicate with doctors…
“First I’d like to thank “Mary” at the MORGELLONS RESEARCH FOUNDATION
for bringing me to understand what this is about!”
“In the very beginning of 2005 I was fortunate to come
across the Morgellons Research Foundation websight. After registering with them and speaking with Mary by phone and e-mail I was convinced to buy a microscope and a woody’s lamp.”
That’s too appalling for words.
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Having lived through a couple of months several years ago during which I experienced some very unusual and extremely disturbing things, I recovered from it on my own, as did my fiancee, Tall Cotton.
We went through different, yet too similar, experiences, at different times from one another, separated by many miles between us. We met in the aftermath of it all.
Of course, coming to terms with the fact that our minds had deceived us, back then, was hard, but yet that fact is undeniable. Neither of us needed anyone to tell us that!! No DOP diagnoses, and no psychotrophic meds were necessary for us to get over it, but with our lives in the balance, recovering was beyond difficult. He seems to think I had a harder time, but for certain, he did.
Okay, now about this thing that’s been dubbed as “Morgellons Disease”. Reading through some old posts from about a year ago, on Lymebusters’ message board, I think I’ve gotten a better perspective on the situation than I had before right now. The people who are there, the people who think that they have “Morgellons Disease”, have a reason beyond what I was consciously aware of. This excerpt summed it up for me…
“One goal at MRF is using modern-day “morgellons” to help all people with skin problems that are slapped with the label DOP, with an eye on eliminating this archaic diagnosis from modern medical text.”
I understand it now, that “Morgellons Disease” is a “catchall term” specifically created “just for” people that have been diagnosed with DOP!! Until I read that comment in that old post, I really did not “get it”. Now, I understand why the morgie people are the way they are.
We’d both never understood how anyone that’s begging for help could refuse it,
defending, instead, their desires to remain in their perpetual state.
Well….
There does not appear to be any one underlying cause for delusional parasitosis, although it probably has to do with fundamental aspects of brain chemistry. This syndrome is often classified into three types according to the underlying condition:
1. Primary Psychotic Delusional Parasitosis (Delusional parasitosis is the sole psychological disturbance):
* patients otherwise behave normally
* reason in a rational manner
2. Secondary Functional Delusional Parasitosis
where there is an underlying psychiatric condition, including:
* schizophrenia
* paranoia
* depression
* anxiety disorders
* obsessional states
3. Secondary Organic Delusional Parasitosis
where there is an underlying physical illness present, including:
* drug abuse
* hypothyroidism
* cancer
* cerebrovascular disease
* tuberculosis
* neurologic disorders
* vitamin B12 deficiency
* diabetes mellitus
We didn’t have a psychiatric problem to begin with, but rather, a “temporary state” induced from underlying conditions, so we both recovered, because we were in CATEGORY NUMBER 3!!
We’d worn ourselves out trying to think of any way to reason with people on morgie message boards, but it’s no wonder we could never bridge the chasm. Now I also see how come they are all so mad, saying that he and I never even “had morgellons” to begin with…except we both KNOW that we didn’t, because there is NO such disease. Anyway, I see this in such a different light now…
Morgellons Disease has brought DOP out-of-the-closet, and taken it mainstream…
Read this:
http://tinyurl.com/rl8ho
Someone please help me out with this if I’m wrong, but I think that excerpt from that old post drove the message home in a really big way!!
It’s harder to be objective, but I know nobody can help this. That typical thing that morgie people used to say on their message boards (as I have commented on so often here), was said to Tall Cotton, here, of all places, under another topic heading…
“I do find it very odd that you should be so involved in this issue that you are allegedly so happy to be rid of. Why do you care so much about us sickoos you seem to despise? Be rid of it already and find another hobby.”
Taking into account the distinct illness that this particular set of people were diagnosed with (that has now been given the name of “morgellons disease”), it’s becoming more clear, at least to me, as being what doctors have said. Not that I’ve ever doubted it, but I was considering the possible role of ineffective patient/doctor communciation skills, for a few.
http://tinyurl.com/e6ewf
DYSFUNCTIONAL COGNITIVE PROCESSING: Delusions may arise from distorted ways people have of explaining life to themselves. The most prominent cognitive problems involve the manner in which delusion sufferers develop conclusions both about other people, and about causation of unusual perceptions or negative events. Studies examining how people with delusions develop theories about reality show that the subjects have ideas which which they tend to reach an inference based on less information than most people use. This “jumping to conclusions” bias can lead to delusional interpretations of ordinary events.
PERSECUTORY DELUSIONS: These are the most common type of delusions and involve the theme of being followed, harassed, cheated, poisoned or drugged, conspired against, spied on, attacked, or obstructed in the pursuit of goals. Sometimes the delusion is isolated and fragmented (such as the false belief that co-workers are harassing), but sometimes are well-organized belief systems involving a complex set of delusions (“systematized delusions”). A person with a set of persecutory delusions may be believe, for example, that he or she is being followed by government organizations because the “persecuted” person has been falsely identified as a spy. These systems of beliefs can be so broad and complex that they can explain everything that happens to the person.
SOMATIC DELUSION:
A delusion whose content pertains to bodily functioning, bodily sensations, or physical appearance. Usually the false belief is that the body is somehow diseased, abnormal, or changed. An example of a somatic delusion would be a person who believes that his or her body is infested with parasites.
* Little work has been done thus far regarding prevention of delusional disorder.
* Effective means of prevention have not been identified.
It isn’t anything new, but it’s gone mainstream now, and we have a bird’s-eye view into how it destroys lives.
Members of the morgie community cry and beg for help, while at the same time they launch personal attacks on people they think are out to get them, when we’re not, defending their delusions all the while, and demanding that anyone who is concerned about this to go away and leave them alone.
Still, I am drawn back to the reported prevalence of this thing dubbed as “morgellons”, now, in late-stage Lyme patients, and, like I’ve said, it’s no secret that chronic Lyme has neuropsychiatric effects associated with it.
I only see any fathomable solution as being following doctors’ orders, for those who’ve been given a diagnosis.
That’s the very essence of this problem, though, isn’t it?
I’m posting a recent CDC letter under that topic, now.
Arrrggghhh.
No one can get Morgellons. People can only “think” they have Morgellons. People who have been in this position, and recovered, may not be immune, but they aren’t likely to ever return to such a belief.
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I just wanted to add that yeah, I’m a regular reader here, and like some of the others, am disappointed both in the efforts of the medical establishment and in the attitiude of those who self-diagnose with Morgellons. As many of you probably know, I joined Lymebusters because I was curious about the phenomenon. As many of you also know, the moment I didn’t claim to be a sufferer, I was greeted with overt suspicion and repeatedly insulted, so I left. I still believe there’s likely something to so-called Morgellon’s Disease, and that it should be investigated, and, no, I don’t think every person claiming to have it is delusional (maybe some are, though – I don’t really know.) But I seriously doubt it’ll ever really be investigated, because, quite frankly, the groupthink has taken over, and most of the sufferers I’ve encountered so far treat any attempts to analyze the phenomenon beyond the range of theories they’ve already developed with extreme hostility.
a. DYSFUNCTIONAL COGNITIVE
b. PROCESSING
PERSECUTORY DELUSIONS
c. SOMATIC DELUSION
A, B, C — it’s easy as — 1, 2, 3
1. Primary Psychotic Delusional Parasitosis (Delusional parasitosis is the sole psychological disturbance)
2. Secondary Functional Delusional Parasitosis where there is an underlying psychiatric condition
3. 3. Secondary Organic Delusional Parasitosis where there is an underlying physical illness present
I’ve yet to see any behaviors from morgies to lead me to think any differently, and if they were diagnosed as having delusional parasitosis and went against their doctors treatment recommendations…
they’ve definitely NOT been abandoned by the medical community. They’re helpless, and it’s AWFUL.
Oops! My “b.” is outta line up there, hehe.
Really this grows more and more interesting
I’ve been pursuing a two fold path.
Psychotherapy and dental surgery.
I’m almost better now
Dear Ms. Smileykins:
First of all, I never said I went to church with you because you are not open-minded enough to attend the church I attend. And unless you have moved across the country, you know darn well you live just a hop, skip and a jump from me and did indeed send me a number of very ugly, uncharactaristic even for your venomous nature, emails, of which I still have in my possession. Can’t anyone see here that methamphetamine addicts (no offense meant, my husband was a drug counselor for years and HE knows, congratulations on beating the demon and I mean it) are the highest percentage of persons with actual DOP in the world? I congratulate you on your overcoming these obstacles and illnesses that do come along with the heavy burden that drugs will put on your liver and entire system for that matter. But let’s speak some truth here dear. We ALL know who you are and where you’ve come from …you and Tall Cotton and just because you’ve recovered from the Demon Meth, does not mean that there are not people out here suffering from a VERY REAL illness! What is it going to take for you to understand that babies don’t do drugs, small children don’t pollute their bodies, and they are suffering from this scourge. There is plenty of medical evidence and it is growing. You are speculating. I am not. And if you don’t stop misquoting me, I will gladly post not only all the crazy threatening emails from you and I think B.A. got you in line finally, but all the pics and extremist fundamentalist religious insanity that went along with it. Your off-screen persona is not a pretty picture my dear and I have every word and picture saved in my hard-drive and backed up, so I would be careful how and where I tread.
I have also begun to recommend to posters on ANY forum that if they do not wish for their posts to be stolen and posted here for your amusement while they suffer this torment, that they should copyright and provide a disclaimer disallowing this dirty practice to be continued so that legal action may be taken in the case that they are. And as far as out-smarting you, Tall Cotton, no Bugs in that Cotton, huh? Well I’d say Southcity’s got you beat hands down. Always has. So you be careful with your facts sweetheart, because I have them in black and white and even color photos too! Across the country my ass!
Tall and Smelly
This is why Lymebusters cannot be considered a “support forum”. Personal information revealed/gleaned within the safety the safety of a support group situation is sacred. Legit support groups absolutely forbid their members to use such information against a fellow member OR a former member. REAL support groups have a vested interest in protecting their members, the value of such groups is the safety to spill all without fear. If Lymbebusters was AA or NA or Parents Without Partners or any other ethical support organization, Dblcreek would have earned a censure with this post.
Cults are a different story. Scientology, for instance, condones and encourages members to destroy former members of the fold.
Legitimate support groups absolutely forbid members to reveal personal information about other members, past or present, EVER.
Cults such as Scientology, on the other hand, advocate and encourage members to destroy those who have left the fold, by whatever means available.
I’m just saying.
JeezLouise:
I couldn’t agree more. Mistakes, whether, intentional or wreckless, have been made. Nonetheless, does that quailify members of this blog to be judge and jury on the rest of patients that suffer from an unknown disease? You want a rant about LB, you could probably get one from me, if provoked, but I won’t go there either. Because it SHOULD be about privacy and respect. That’s been my gripe about them from the get go and they darn well know it. Said it couldn’t be done. Well it’s been done now, hasn’t it? The most important word being here being RESPECT. We are all in this together. On this planet TOGETHER. Whether you have THIS disease or THAT disease shouldn’t matter. As adults and compassionate people, we should give one another the respect that every human being deserves and Smiley, I am not going to play games with you. Zilch.