Okay, so you are ill. You have bad skin, you feel tired, you can’t think very well, you itch, you find fibers on your skin, and doctors don’t take you seriously.
There are a number of diagnoses that might cover many of your symptoms. But let’s assume for now you have a novel infectious disease which we shall call “Morgellons”.
Now, how do we know this is a disease?
Let’s consider another diagnosis – one that many people feel is related – “Chronic Lyme“. Many people seek out a diagnosis of Chronic Lyme, thinking this diagnosis with allow them to deal with their problems. People even report great happiness when they are finally, after much effort, are diagnosed with Chronic Lyme. Believers congratulate one another. Typical quotes from the previous link:
- “I feel vindicated”
- “It’s a milestone to be diagnosed with Lyme disease”
- “congratulations on getting a diagnosis ! what great good news ..bad news “
- “Getting the Lyme dx, I was elated, happy to finally know what I had..”
These people are HAPPY that they have Lyme. Finally they can put a finger on the cause of their fatigue. What’s the problem here? There is not much evidence to support the concept of late stage Chronic Lyme – studies show people who have had Lyme do not get sicker than people who have not.
Sure, these people are sick – but lots of people get sick, lots of people have chronic symptoms of eczema and fatigue for no known reason. The difference here is that some people are so desperate for a diagnosis, that they either diagnose themselves, or they seek out a doctor who will give them the diagnosis they seek.
The people who choose Chronic Lyme to explain their symptoms are fortunate in that they choose a real disease, that might actually occur in chronic form. It’s also fairly new, so the literature is still in flux. The fact that the CDC and AMA downplay the incidence of Chronic Lyme does not dissuade them, they have choosen Chronic Lyme, they seek out a friendly doctor, and they start happily “treating” their disease.
People who choose Morgellons are less fortunate. Morgellons is not based on a real disease, so they have to claim it’s an unidentified infectious agent. They still want the joy of validation, they seek a diagnosis. Unfortunately there are no friendly doctors. They are reduced to diagnosing themselves, and forming support groups to diagnose each other, and pescribing each other treatments, to validate and reinforce their own belief.
Statistics do not Chronic Lyme is not the epidemic some people claim it to be, it is probably a mistaken diagnosis in a large part of the group that claims to have it. They are simply unhealthy, as many people are, particularly in America.
Similarly, Morgellons is just a collection of chronic symptoms that are typical of a percentage of the demographic that reports those symptoms. You are not the carrier of some novel infectious agent, you are simply getting old. Seeking a diagnosis of some exotic disease is a very seductive idea. Unfortunately, in all likelihood, you are simply getting a bit older, and are in poor health – in part due to stress, bad diet and lack of exercise.
The seductive diversion of “Morgellons” is an illusion. It is wasting your time, and the “treatments” are probably making you sicker.
Absolutely, I do not.
With all due respect, the underlying infectious disease processes, for which I was under-treated, due to my own neglect, entirely, most definitely caused psychopathology, in me, for a period of a couple of months.
I had never heard of anything like unidentified skin parasites, or morgellons. I’ve been in remission from the eczema I’ve had all my life, so fibers in my skin was nothing new to me. That’s been in remission at least 15-20 years.
Oh, yes, I’d installed fiberglass insulation in my home, quite some time prior to my experience. Well, you know how easy that is to just wash away. Now, to briefly explain, just some, of how the experience was set into motion for me:
I’d had a couple of small puncture wounds, that, careful as I was, had gotten infected. I didn’t know much about puncture wounds, then, and the seriousness surrounding them, but one on my heel developed a red streak, going up my leg.
I have combined autoimmune diseases, due to heredity, and I apparently had a vasculitis flareup as well (inflammation of the veins).
I learned, three years later, in hindsight, that I have kidney stones, which I was painfully passing, back during that time period, thinking it was something else, having only been diagnosed with a bladder infection and prescribed Cipro when I’d called an ambulance to take me to the hospital, prior to passing the stones, back then.
What I experienced during this time period, was as real as knowing there is a moon and a sun in the sky. I also knew I was experiencing something completley abnormal, and I was ashamed and embarrassed. I nearly wasted away in seclusion while I was ill.
To cut to the chase, I recovered, spending approximately $25, total, and put it as much behind me as possible. Years later, I heard through the media, that there was a real disease, and it fit the bill to explain what I’d gone through, and witnessed, back then.
I visited the website I was directed to, and delved into it, recounting my experience. I began by saying that I had pieced my personal puzzle together, and closed that tiny, yet profound, chapter in my life.
Ah, but no, a morgie person quickly told me that I’d had it all figured out incorrectly, that it was a legitimate, actual, disease I’d experienced, and that I’d come to the right place. Of course, I soon saw what was going on, and it was so disheartening. I got caught up in trying to help, and they misinterpret anyone who doesn’t play the game right. They’re very ill people, without question.
Incidentally, I was diagnosed with fibromyalgia, back in the 80s, when they still called it fibrositis. That has absolutely nothing to do with anything. I’m happy with my age and have always embraced growing old gracefully, too. (Hehe) Many of them do sound resistant to the natural aging process, among other things.
What is the key ingredient that set me apart from this group of believers?
Oh, well, of course, I simply didn’t have the same thing they all do, to hear them tell it.
Some of them have fibers without lesions
Some of them have lesions without fibers
Some have black granules and other types
Some of them have bugs
Some of them have worms
Some of them just itch
Some of them don’t even do that
…on and on
It seems many believers have lost it all, because of this disease. It’s all consuming, mattering more, to a large portion of them, than everything valuable in their lives.
Yes, they all have the same thing. They’re too blind to understand it’s their lives, and that they, alone, are the masters of their own destiny. They seem to have all had an errosion in their personal constitutions, or do they even have one for themselves? One can blame that errosion on being ill, yes, but…
it leaves many questions, doesn’t it? You know they can’t help this.
Lest we forget:
“It all started with a young boy named Drew…”
No!! I Let it Go!!
Morgellons is quite aggravating. A persistent itch can make a person feel as if they are being driven nuts! The itch is very stressful, and so is the knowledge that a person is thought of as being delusional. The unsightly sores make one feel as if he or she should hide in isolation. People stare, or take a double take. The suffering individual wonders if people think they are unclean. Open sores are unclean. There’s no way around it. The individual will sometimes ask, “Will everyone think I’m on drugs?” This mental trauma further aggravates the condition. Some individuals also pick at their skin and or apply harsh chemicals, making the condition even more aggravating, and the viscious cycle goes on a downhill spin.
I believe that it’s crucial to most morgellons sufferers that they receive a diagnosis of having a recognized disease or which will account for most of their many symptoms, and account for the severity of their illnesses. They want to be believed, and there’s nothing wrong with that. It’s natural, also, to want to get on the road to recovery. The problem is, there often no known disease to account for “all” of the symptoms. Many people have multiple illnesses and many conditions allow opportunistic infections to develop. Doctors will diagnose some of the conditions, but they sometimes want to deal with one problem at a time. It’s much easier to put all of these conditions under a single title, and the founder of the Morgellons Research Foundation has given them all that opportunity by inventing such a disease.
I don’t know which came first, the Morgellons Research Foundation, or NUSPA, but just in case one disease isn’t enough, Mary’s sister, Lois, has a forum called National Unidentified Skin Parasites Association. At least I’m told that the two are sisters. It’s really convenient to have two different problems with the same symptoms, one being a mysterious disease caused by an unidentified novel organism and the other being more specifically a skin parasite. To keep the two pathogens separated, it seems that Lois only considers a parasite to be a “critter” that hops, crawls, and bites. Her “no-see-ums” are unseen because of the pathogen’s own illusiveness, whereas Mary’s are unseen because they are tinier than hell.
Well, before I get too far off the beaten path, the Morgellonites are very grateful that their mentors have granted them the needed tools for vendication. Two problems exist however. One problem is that hardly any scientifically minded individual believes that morgellons is a real disease. And the other problem that no one has come up with the guilty pathogen or a satisfactory cure. So much for vindication and the road to recovery. The sufferers continue to ignore the partial diagnoses from the real medical community, and now suffer additionally because they bought into the lie. They aren’t a big threat to their own communities, since they keep themselves isolated most of the time, but they are a real threat to those they deceive. And with the help of the internet, the delusion is spreading.
It’s so beyond comprehension that people don’t see through this, even though it’s all been made public on the web. Here’s a collection of repetitive highlights for those whose minds can allow them to have their eyes opened wide.
The Morgellon’s Foundation — named for an early description of a similar-sounding illness — was formed in 2002 to help the people most doctors won’t believe. Some doctors interviewed said the foundation is dangerously reinforcing peoples’ mental illnesses.
But the foundation’s spokespeople said the knee-jerk diagnosis of delusions is the problem, not their questions or the evidence they offer. Morgellons’ members encourage further investigation into what they consider a health mystery. But they said researchers don’t seem interested in new data and dismiss their information as quackery.
Mary Leitao, a biologist and the executive director of the Morgellons Research Foundation, said doctors have become “a brick wall. They have their answer and they aren’t open to discussing the possibility they could be wrong.”
“They are so smug and sure they are right,” she said.
Mary Leitao of McMurray, Pa., she said she began the group out of desperation. Her son, Andrew, now 5, began complaining of things crawling on his skin and was breaking out in lesions when he was 2.
Leitao, who has a degree in biology and who has worked as an electron microscope operator and a chemist, saw the fibers and the “fuzzballs” in Andrew’s skin lesions. She took him to an infectious disease specialist at Children’s Hospital of Pittsburgh.
At first, she said, the specialist thought the skin condition was an unusual case of scabies and prescribed a cream-based medicine. When that didn’t work, the doctor assured her the lesions weren’t caused by anything infectious and Andrew was referred to a dermatologist.
Leitao said the dermatologist was initially fascinated by the blue fibers sprouting from her son’s skin lesions.
“The doctor looked at everything I showed him,” she said. “He examined Drew’s skin lesions using the handheld microscope I brought. He was so amazed at the blue fibers coming straight out of a skin lesions that he called his physician’s assistant over to look at them.”
She showed the doctor how the fibers glowed under an ultraviolet light.
“The dermatologist admitted he did not know what made the fibers, but was not willing to help me find out,” Leitao said. “His final diagnosis was eczema. He gave my son topical eczema medication, which did not help.”
As she left his office, she saw the doctor going out to lunch with his wife and 4-year-old son.
“Not a care in the world,” she said. “What is wrong with these guys? No innate scientific curiosity or human empathy?
“I realized I was on my own.”
It all started with a young boy named Drew…
When her son developed a mysterious rash her natural instinct was to look at a sample of the rash under a microscope. What she found was not what she expected, nor has the response from the medical community been what she expected, either.
A recent photo caption:
RECOVERING: Mary Leitao, director of the Morgellons Foundation, plays with her son Andrew, who is recovering from Morgellons’ disease. Doctors had diagnosed Andrew with eczema, a common skin ailment although his symptons mirrored those with Morgellons’ disease.
Leitao’s motivations come from her 6 year old boy Drew. Four years ago, he began to feel the itch.
“He started describing bugs. He said, mommy, bugs, and he would scratch.”
Then came the sores that shed the fibers. Mary took drew to the doctor and the doctor said it was nothing to worry about.
“I was going to find an answer, or I was going to have to take my life, that’s all there was to it.”
Most doctors interviewed dismiss alleged evidence that medical science has overlooked what patients are calling “Morgellons’ disease” and insist that the patients are delusional.
Mary Leitao graduated magna cum laude from the University of Massachusetts with a BS in Biology. She has worked in various capacities for the Harvard School of Public Health, Massachusetts General Hospital and the University of Massachusetts Medical Center. When her son developed a mysterious rash her natural instinct was to look at a sample of the rash under a microscope. What she found was not what she expected, nor has the response from the medical community been what she expected, either.
This mother, it says, followed her “NATURAL INSTINCT” when her toddler conveyed he felt like he’d had bugs on him (how else can a tiny child describe itchy-crawling sensations?), and he developed a rash, then sores, which fibers adhered to, and she went FOR HER MICROSCOPE?! That’s a “natural instinct” of a mother? Just listen to her, thinking that the dermatologist and his physicians assistant were so fascinated by the FIBERS SHE SHOWED THEM WITH THE HAND HELD MICROSCOPE AND A BLACK LIGHT SHE BROUGHT IN WITH HER!!!!!
WTF? Oh yeah, that was fascination they had all right. (ouch)
Why did she not learn what a diagnosis of ezcema meant, and when the topical medicine didn’t work, communicate that to her son’s doctor and try another one, like everyone else with a child diagnosed with eczema?
The preceding excerpts can be found in the following artcles:
Quite a mess she’s created with her problem, and I see no end in sight.
God forbid the morgies end up having things result in some new mental health legislation, since they have such a letter writing campaign to capitol hill and all public health agencies.
God bless ’em all.
Isn’t it ridiculous that Mary Leitao would even contemplate suicide because her child a case of Eczema that she can’t understand. What would that child do then? On second thought…
Well, that suicidal threatening quote is the exact type of things that all of her followers say, though.
Everything the discerning reader sees about Mary Leitao, within those news articles, spells it all out quite clearly.
She had a fixation, and an ill conceived perception of reality. The dermatologist added insult to injury, making her feel humiliated, having thought he was really taking her seriously, when, in actuality, he was merely humoring her.
A couple of her other very telling quotes, which I didn’t include here, are, “The saying is ‘the disease is the patient,’” and “Only those willing to look outside the book move from technician to scientist.”
Poor Mary took awfully drastic measures to regain her dignity, but…she has herself in the limelight. At what cost, though, making such a spectacle of herself, and doing it at the expense of other sick people with the same problem.
Without her facilitating the madness of so many, with her made up disease, and its research foundation, people would have stood a better chance of recovering from their ills.
I’d like to add, also, that I believe Dr. George Schwartz was, once, a true man of genius.
It seems very apparent that something terribly wrong took him over (as well), and his involvement seems to have come about as him having seen a prime opportunity to take advantage of easy prey for some fast bucks.
Maybe it’s some weird tropical plant, mutation or not, that Mexicans have caught working in the fields, and they’ve brought into the United States. It looks like roots with a seed pod. Also, a large number of patients also had mites and tiny bugs crawling on their skin. Maybe this stuff attracts tiny bugs and/or is attracted to them. Human skin is covered with microscopic creepy crawlies. And, people report that the symptoms worsen in humidity or in a shower. Plants love water. Tropical plants love warm water?? Anyway, its not that weird if you think about it; venus flytraps exist.
Jerry, if “it” were a plant, they could just look at it under a microscope, and see plant cells. There is no “it”.
People have a little bit of everything wrong with them, but there’s no reason to think that another new disease has emerged. Besides, people are taking a very wide variety of things, mostly all previously diagnosed, and calling them all Morgellons. It’s causing needless hysteria.
RE: “There is no chronic Lyme”…
You need to seriously get over yourself and revisit your thinking on this. See the work on NeuroLyme done by Dr. Brian Fallon (impeccable credentials) at Columbia University. More importantly- read “On the Take” by Jerome Kassirer- a former editor-in-chief of the New England Journal of Medicine- to understand the compromised state of medical research today- and KNOW that the research on Lyme is politically and financially driven.
Also, try telling that that to the families of two people who are now catatonic in nursing homes at 61 yrs old and 44 yrs old respectively, because their tertiary, late stage Lyme went misdiagnosed for YEARS due to the misinformation from the CDC and AMA (who you so readily defend, as if they are as pure as the driven snow)
Also, do try to remember the history of ulcer research- chronic Lyme will be vindicated because more and more physicians are getting it ON THE GOLF COURSE! And recovering only after long-term antibiotic treatment.
Sorry, you are wrong that there is no such thing as chronic Lyme- I had it and have been medication free for two years- but my entire family went through hell until it was finally diagnosed by a “friendly doctor” who became interested in it after her 12 year old son did not get well with a ten day course of antibiotics.–>
As far as I know, it’s called chronic lyme, late-stage lyme, tertiary lyme, post-lyme disease syndrome, and neuroborreliosis. From what I can understand, lots of people can be cured of early lyme (?) if they get the proper antibiotics within so many hours after being bitten by a tick. I think way more people than we are even aware of have progressed into late-stage lyme, without ever suspecting it.
thank you beach wanderer, im new to this but please dont let these 2 stifle debate by bellicose posturing and simply absurd statements