If you were registered with the Morgellons Research Foundation about a month ago, then you would have gotten an email from Mary Leitao, in which was stated:
“Please know that hope truly is on the horizon. Please do not poison your body with pesticides and toxic chemicals while this mystery is unfolding. You must remain as healthy as possible.
If you would like a place to communicate with others who have this disease, you can go to this message board, which is dedicated to Lyme and Morgellons. http://lymebusters.proboards39.com/index.cgi
Mary M. Leitao, Executive Director
Douglas Buckner, Ph.D., Associate Director Morgellons Research Foundation”
On the MRF web site, back from February 2005 , until the recent re-design, there has also been a link to the Lymebusters discussion board:
Why does the the MRF recommend Lymebusters (and ONLY Lymebusters) as the place to discuss Morgellons? I’m really not sure – since a look at Lymebusters does not lend Credibility to the Morgellons case. Here are some representative quotes from the past 48 hours or so:
I also have the stabbing ones, usually the stabbing is in the region of the lower legs and ankles. I can pretty much control this by spraying natural insect repellant on my lower legs everyday. If I forget I get the stabs. Also spraying the carpeting lightly with cedar oil spray helps. These things also float around in the air. I have a big plastic spray bottle that is one quarter water and three quarters Everclear Grain Alcohol that I added grapefruit seed extract to, also added lavender and teatree essential oils. This makes a great spray to clear the floaters out of the air, also like to spray my sheets with it before I get into bed at night.
[…] I sat down in front of the computer, turned it on and within 20 minutes I was being swarmed by stuff! I looked at the computer screen and saw the “things” that most of us have. The cube that I sat in was very dusty. So I got out the H2O2 and wiped everything down, wiped my face off, and the swarming stopped.
If a Dr wants to be in denial that something physical is wrong then he has to do it on his own time and without me in the room. I have fired about 15 Dr.’s for the way they talked to me . I finally got sick of it and started trying things on my own. Then my nurse friend sent me to her Dr friend and he listens and he is at least trying. I have been to 32 Dr.’s in 3 years.
You should see a big difference if you zap tonight, as the moon is full, and the parasites are active and easier to kill. Hanna Kroeger recommended going after parasites 5 days before the full moon until at least 5 days after, as that’s when parasites come out of hiding in the body to reproduce
This current lesion, about 1 inch square on my lower right arm I brought on myself, by pouring bleach on a picked area. There was an instantaneous, very scary reaction. The skin peeled back in a flash. My first panicked thought was ‘flesh eating disease’ and I grabbed my colloidal silver and splashed it on the area. The peeling instantly stopped. Then before my eyes a weird thing happened. Instantly all sorts of black fibers, specks and what appeared to be semi-formed arthropod forms appeared in the wound, spaced a bit apart from eachother
These are not unusual posts. They are quite typical, and they go without comment. There are far worse posts in there, but I limited it to the last 48 hours, and left out the suicidal rambles.
So why is Lymebusters the semi-official discussion board of the Morgellons Research Foundation? It really can’t help their image.
Lymebusters, as has been noted several times in comments here, is not a very healthy place. It’s a place where people build and reinforce errant belief structures, and a place where vulnerable people can easily be snared.
How can the MRF say “Please do not poison your body with pesticides and toxic chemicals while this mystery is unfolding” and then two paragraphs later direct them to Lymebusters, where people discuss assailing their skin with bleach, Everclear, tweezers and worse.
Morgies fear or believe they have a major skin disease which they call Morgellons, even though they have been reassured repeatedly that no such disease exists. Some fear that it has brought problems to several bodily systems. Others focus on a single organ. They typically do a lot of doctor shopping, and their relationship with one physician deteriorates when their fears are not confirmed. Many of them are also anxious, depressed or suffering from obsessive-compulsive disorder. The problem can be relatively mild, or can become so severe that the person adopts the lifestyle of an invalid. Several Morgies are schitzophrenics, and they all seem to be delusional in one way or another.
Several have rejected valid diagnoses and have forgone medication, believing that their problem is Mary L.’s made up disease. They can’t see past the nose on their faces or else they would see that she is a fraud. Mary doesn’t care about these people. She only cares about herself and her Disinformation Foundation. Four long years have gone by, and she’s never put out a single warning on lymebuster’s forum to discourage the destruction that is caused when these people self-medicate with pesticides, solvents, and other dangerous compounds. Her son has been in remission from eczema for a long time now, but do her followers realize what started this foolish movement. No! They don’t seem to understand much of anything.
Mary’s followers think she is Mother Superior. She confirms their fears/beliefs, but she’s the one that gave them the “disease” to begin with. They cannot see that she recommends a particular message board because they esteem her highly and say good things about her. The truth about her needs to be known and the WTF Foundation needs to be closed down forever. She is a menace to society and so are the owners of the message board that she recommends. Most of the followers are mentally ill and they are taking advantage of these poor souls. The doctors that work with Mary are quacks, or worse. Wake up, people!!
Things weren’t right. MRF was founded in 2002, and “It all started with a young boy named Drew”. I don’t know when they associated themselves with Lymebusters, which is a “support message board”, to support, oh God only knows, but it’s more than nine kinds of hell, the way I see it.
Still, there were no updates on that little boy that the organization was founded for, that the very “disease” was created in honor of (?), in that entire timespan.
All that there’s been are old pictures of his “lesions and fuzzballs”, from when he was a toddler. Up until just recently, we’d only heard about him in the news articles about how morgellons disease came into “existence” (ahem). His mother stated, that after his dermatologist diagnosed him with eczema, which she’d refused to believe he had, that the topical prescription for it didn’t help. I think that was just about the extent of it. Four years of no further word on the child.
He’s already 7 years old now, and doing quite well, in the last account I’d read. It’s also pretty strange to read in news articles, that there are two older siblings with this disease their mom invented.
If that’s mentioned on her foundation’s website, I’ve somehow overlooked it. The two older children with “morgellons” came as a big surprise, to me. Even more of a surprise, unless this is a misprint…
“2002: A South Carolina mom researching her children’s strange skin condition starts calling it Morgellons and creates the Morgellons Research Foundation.”
“It all started with a young boy named Drew”, right?
Well, that’s in the San Francisco Chronicle story from June 2nd, as well as this quote from the morgies’ (how was it they put it?) “renowned physician”, Dr. Stricker…
“There really are physical symptoms that occur in people who are not crazy, although once they have it, it usually makes them pretty crazy.”
It’s bad, and it’s sad, that there isn’t a concerned person, an advocate, in their lives, to guide them, as well as to raise questions, for them, if they couldn’t.
There are plenty of “Hail Saint Mary!” praises, and declarations, from morgie people, about how much they say she, and the team at MRF, loves and cares for them all. I’ve never noticed that she has shared a single treatment suggestion that has assisted her son, Drew, or these two other children, anywhere, either.
By all means, the “caring” MRF should have immediately posted warnings in place on Lymebusters message board, somewhere, against self-mutilations. It is included, in this manner, just within “morgellons case defintion”…
2. Most of these patients feel abandoned by the traditional medical care system and have sought alternative care providers or have self medicated, seriously compounding an already difficult medical situation.
That’s it. And, now?…
“Please know that hope truly is on the horizon. Please do not poison your body with pesticides and toxic chemicals while this mystery is unfolding. You must remain as healthy as possible.”
She’s concerned about this after not cautioning her people, her devoted followers, for the past four years? She’s concerned about “who” exactly? It seems that she wanting uncontaminated lab drones.
This whole thing is so sick.
So pour bleach on a self-inflicted wound and it’s the BUGS that are causing the reaction?
You got it, Queenbugb. Imagine the trepidation of getting caught up in trying to explain what’s happening, what they’re doing to themselves, and why they’re in their perpetual states. One can’t even get to first base with any of them.
How about this one from Lymebusters?
Re: hypothetical question….what if you found out
« Reply #14 on Jun 5, 2006, 1:13am »
“Only thing that did work somewhat well was the 3 ozs of malathion every other day in 1 gal of water.I have since switched to the granular form which I spread throghout the house….feels like your walking on sparrow seeds under your feet…”
Is that totally stupid, or what?
I was completely freaked by the woman who posted about using a mirror and tweezers to attack her genitals. I was further freaked that NO ONE who posted replies suggested that this woman get help ASAP.
Tall Cotton, you say: Morgies fear or believe they have a major skin disease which they call Morgellons, even though they have been reassured repeatedly that no such disease exists.
I have become convinced that Morgies *want* their problem to be a major, mysterious uncurable skin disease and resist all suggestion otherwise. Read the recent thread regarding the Marshall protocol. The OP says it completely works, and the first reply questions the wisdom of long-term antibiotic use, even in low doses. If Morgellons is such a horror that ‘sufferers’ are willing to douse open sores with bleach, spray their homes with malathion and use veterinary medications, why would long-term antibiotic use trouble them?
Perhaps because it is simple, and it works?
Perhaps because, without Morgellons, they’ll just be ordinary people like the rest of us?
Smileykins, I just noticed this:
“the WTF Foundation”
Excuse me while I wipe spewed diet coke off my monitor.
Hehehe, WTF Foundation is fitting.
Long-term antibiotic treatment is what some morgie people choose, switching around and experimenting with them, as well as combining them with their various other remedies.
Doctor Harvey and Nurse Savely admittedly say they’re treating with various ones.
Victoreah, a morgie person, as well as another I can’t recall the name of, have super-strains of bacterial infections.
We know the overuse of antibiotics is what creates them, and that there is nothing to treat these super pathogens, and that they are forever morphing into new pathogens through the usage of what?
So, what hell hath thou wrought, now, with this invented disease of morgellons, preying upon this section of our society?
Here’s another one!
Re: I believe I found what KILLS them
« Reply #9 on Jun 13, 2005, 2:52pm »
Hey guys….please don’t think I am trying to rain on your parade. I truly am going to say this because I don’t want anyone to do what I did.
I agree with all that has been posted about the type of pesticide. I too, sprayed, spayed, and sprayed. Myself, my clothes, my home, my stuff, my bed, my floors, everything.
Eventually, I had to leave my home. This does not happen to everyone Thank Goodness! It was the only way I was able to begin to improve. I would have died in the home where I was living. We initially went to a hotel/small kitchen type but the few items we brought needed spayed so I continued to spray to rid these things from a few clothes and my car.
Well, the time reference was about 6 weeks and I went into cardiac arrest at the hotel. I did not know that at the time. Husband talked me into going to the ER one more time and I felt so horrible I agreed. I had a heart attack, angogram showed no blockages….but did reveal heart damage. (Appx one eighth of my heart was lost). I was 37 years old, female, and life style and my size was not conducive for heart attack.
I know it was partially due to the morgellons, but when they did my blood work one week later. My blood result came back exactly…..and I mean the exact same percentages and list of ingredients as my favorite pest spray at the time. I could of held up the label and the blood test and you wouldn’t know which was which. I knew it was exactly why my veins constricted so much from the repeated usage….causing a heart attack. I would have never guessed. But this is true.
Please just be careful. Sincerely Faith
I’m presuming that, for one thing, people who think they have Mary Leitao’s “morgellons disease” are directed to Lymebusters due to the prevalence of lyme patients with what she thinks are “morgellons disease” manifestations.
It’s a very dangerous place, and aids in making sick people much more sick. I’ve read accounts about how helpful Mary Leitao has been when people who think they have “her disease” have contacted her.
To further her agenda 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’s troubling enough to read, but look at this declaration from someone who is ill, and hasn’t been able to 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.”
So, if they aren’t compulsively obsessing enough already, her “convincing advice” is leading them into it, as well as her direction to Lymebusters.
Anyway, I’m curious as to whether this could possibly be what the lyme patients with strange cutaneous symptoms have, but it sure isn’t “morgellons disease” because there’s no such thing…
Studies in Europe have shown that there are rarer manifestations of cutaneous lyme disease, but it hasn’t been determined in the USA yet. Cutaneous Borreliosis with lesions having histiocytes
that are interspersed with collagen bundles, sure sounds suspicious of the lyme-“morgellons” connection to me.
RARE CUTANEOUS LYME:
In areas where B. burgdorferi is endemic, the presence of inflammatory morphea-like lesions with histopathologic features of interstitial granuloma annulare should raise a red flag for the possibility of cutaneous
borreliosis, especially if granulomatous pseudorosettes and/or plasma cells are seen
in the biopsy specimen.
Whenever feasible, supporting data such as
special stains or PCR for Borrelia, Lyme titers, and good clinical history
should be used to confirm a suspected case of B. burgdorferi infection.
*On a cautionary note, the below study is based on European cases (study groups
in Spain and Germany); whether the histopathologic features noted by Moreno and
colleagues are also present in American cases of cutaneous
borreliosis remains to be determined.
Journal of the American Academy of Dermatology
From Journal of the American Academy of Dermatology
March 2003 (Volume 48, Number 3)
Interstitial Granulomatous Dermatitis With Histiocytic Pseudorosettes: A “NEW”
Histopathologic Pattern in Cutaneous Borreliosis. Detection of Borrelia
burgdorferi DNA Sequences by a Highly Sensitive PCR-ELISA
Moreno C, Kutzner H, Palmedo G, Goerttler E, Carrasco L, Requena L; Journal of the American Academy of Dermatology. 2003;48(3):376-384
The classic cutaneous manifestations of Borrelia burgdorferi infection include
erythema chronicum migrans (ECM) (early stage) and acrodermatitis chronica
atrophicans (late stage), yet RARER MANIFESTATIONS mimicking localized morphea or pseudolymphoma have also been described.
Moreno and colleagues now describe a distinctive histopathologic appearance seen in the skin lesions of 11 patients infected with B. burgdorferi, the etiologic agent of Lyme disease.
Although most of these patients showed clinical features of morphea, some presented with characteristic ECM lesions. All patients had B. burgdorferi present in their skin lesions, as demonstrated by polymerase
chain reaction (PCR).
Thirteen cutaneous biopsy specimens taken from 11 patients with morphea-like
or ECM lesions showed previously undescribed histopathologic findings,
1. an interstitial inflammatory infiltrate primarily composed
of histiocytes interspersed with collagen bundles
2. focal areas of small pseudorosette formation (small histiocytes radially arranged around thick collagen bundles)
3. occasional plasma cells intermingled with the
4. B. burgdorferi present by PCR or PCR enzyme-linked
Clinically, these lesions occurred in patients ranging from 2 to 78 years of age
(mean age, 54 years; 10 female, 1 male). Six patients presented with multiple
erythematous skin patches on the trunk and/or extremities, mostly resembling the
inflammatory stage of morphea, with clinical diagnoses including ECM,
granuloma annulare, figurate erythema, lichen sclerosus et
atrophicus, cutaneous lymphoma, parapsoriasis, tinea, and eczema.
These lesions all showed histopathologic features similar to the diffuse or
interstitial type of granuloma annulare, with 2 distinguishing features:
1. the presence of granulomatous pseudorosettes;
2. interspersed plasma
Morphea is also known as Localized Scleroderma
That above, e-medicine link, updated as of May 5, 2005, clearly says, that among other things, morphea is synonymous withB.
So, what’s up with the European studies’ on more rare cutaneous manifestations of lyme disease supposedly not being known of, yet, in the USA?
I’ve searched, but have yet to find any studies here, but still, take a look at that e-medicine link on morphea.
“Overproduction of collagen by lesional fibroblasts is common to all forms of morphea, but the exact mechanism is unknown. Proposed factors involved in the pathogenesis include endothelial cell injury, immunologic and inflammatory activation, and dysregulation of collagen production. An autoimmune etiology is supported by the frequent presence of autoantibodies in patients with morphea.”
S9C13P6-5: this illustration concerns the streaked collagen bundles that characterize the deep portion of the dermis in a mature lesion of morphea, and the rigid, black elastic fibers that are among, and parallel to, the altered collagen bundles, that extends into the fat tissue.
Those European studies also cite Granuloma Annulare’s association with B. burgdorferi, which is another perforating skin disease, of which I referred to in a previous post under the topic entitled, “Physical and/or Mental” in this blog.
Now, “what”, precisely, has led people who are ill into thinking they have “Morgellons Disease”, and taken them way far off into the wild-blue-yonder, when they could be learning beneficial things that are right at their fingertips, and quite relevant to their conditions, is up-for-grabs.
I’ve read that lyme disease is often misdiagnosed as:
Chronic Fatigue Syndrome, Multiple Sclerosis,
Alzheimer’s, Parkinson’s disease, Lupus, Lou Gehrigs (ALS) disease, Guillian-Barre Syndrome, Polymyositis, Hepatitis, Cardiac Disorders,
Fibromyalgia,TMJ, Ringworm, Tullio Phenomenon,
Encephalitis, ADD, ADHD, Meningitis, Depression, Panic
Disorders, Bells Palsy, Candidiasis, Chronic Mononucleosis, Hypoglycemia, Scleroderma, Epstein Barr
Virus, Heart Disorders, Autoimmune diseases, Bannwarths Syndrome, Cancers, Kidney disease, Raynauds Syndrome, Stress-related Illness, Sleep Disorders,Thyroid problems,
Vasculitis, Anorexia, Agoraphobia, Cerebrovascular Disorders, Arthritis, Connective Tissue diseases, Hearing Disorders, Crohns disease, Purpura,
Pseudotumor, Sjogrens Syndrome, Stroke, and Respiratory Insufficiency.
A lot of those things are associated with lyme disease, but a lot of them are separate entities, too, or are associated with other illnesses and diseases.
Any person who thinks that they have “morgellons disease” has an
inflammatory condition brought on by whatever illness(es) they REALLY DO HAVE, which is related to their connective tissues, and this whole “morgellons disease nonsense” is nothing other than sheer and utter lunacy, for sure.
I apologize. I know all my lengthy posts make ME appear as being a bit off in the head (haha), but I’m passionate about this topic.
This is a big clue for morgies, but they would never see any connection, with their minds so infiltrated with nonsense…
Way too many morgie people report dry eyes and dry mouth. One, who knows that she has Sjogren’s sydrome has bacterial infections in her private region, and corneal ulcers. I don’t remember about her teeth, but I assume there is a problem there, as well. Another, who knows they have Sjogrens syndrome, has had deteriorating teeth, too. Deteriorating teeth among morgies seems to be common.
Severe dry mouth is not a normal part of aging. It can be A CLUE to serious systemic diseases such as Sjogren syndrome, systemic lupus erythematosus, rheumatoid arthritis, scleroderma, sarcoidosis, amyloidosis, and hypothyroidism.
Without enough saliva you can develop tooth day or other infections in your mouth and you would limit your nutritional intake if you could not chew or swallow certain foods.
Sjögren syndrome (SS) is characterized by lymphocytic infiltrates in exocrine organs. Typically, most patients present with sicca symptoms, such as xerophthalmia (dry eyes), xerostomia (dry mouth), and parotid gland enlargement.
However, numerous extraglandular features may also be present, such as arthralgia, arthritis, Raynaud phenomenon, myalgia, pulmonary disease, gastrointestinal disease, leukopenia, anemia, lymphadenopathy, neuropathy, vasculitis, renal tubular acidosis, and lymphoma.
SS is sometimes called primary when no other underlying rheumatic disorder is present, whereas SS is sometimes called secondary SS if it is associated with another underlying rheumatic disease, such as systemic lupus erythematosus (SLE), rheumatoid arthritis (RA), or scleroderma (Scl).
Given the overlap of SS with many other rheumatic disorders, determining whether a clinical manifestation is solely a consequence of SS or is due to one of its overlapping disorders is sometimes difficult.
Importantly, classic clinical features of SS may also be seen in viral infections with hepatitis C, human immunodeficiency virus (HIV), and human T-cell lymphotrophic virus. Treatment for SS is largely based on symptoms, but patients must be watched carefully for the potential development of lymphoma.
Scientists think that the trigger may be a viral or bacterial infection. It might work like this:
A person who has a Sjögren’s-associated gene gets a viral infection. The virus stimulates the immune system to act, but the gene alters the attack, sending fighter cells (lymphocytes)
to the eye and mouth glands.
Once there, the lymphocytes attack healthy cells, causing the inflammation that damages the glands and keeps them from working properly. These fighter cells are supposed to die after their attack in a natural process called apoptosis, but in people with Sjögren’s syndrome, they continue to attack, causing further damage. Scientists think that resistance to apoptosis may be genetic.
Morgie people whose teeth have deteriorated either have Sjogrens syndrome, or, to cover another causative factor in dental caries, they have had methamphetamine use at some time in their history. Sjogrens sydrome, or that, is to blame on the tooth destruction many complain of.
Smileykins, you have mentioned several problems that some of these people do have, or are likely to have, such as Cutaneous Borreliosis, Sjogrens Syndrome, Sarcoidosis, Ocular Herpes, Eczema, and others. But it seems that the Morgies aren’t going to be satisfied until the world believes Mary’s lie, that what they really have is the Mysterious Fiber Disease they call Morgellons. It’s sad that this lie is causing unhealthy people with other real problems to reject their doctor’s diagnoses and forego needed medication. They also experiment with every compound imaginable, including harmful pesticides. A lot of these people could be well on their way to recovery had they not gotten caught up in cult of the Morgellons believers.
I know, Tall Cotton. And I know that you know that I know. There’s not a living soul who has any possible way of knowing what all these people who are brainwashed into thinking they have “morgellons disease” actually have.
Aside from their self-induced progressive poisonings, their self-mutilations, and aside from the pathogenesis of the super-strains of bacterial infections they have brought about from unabashedly using so many antibiotics, I still have no doubt that many of them have treatable conditions.
Including the allergic and the infectious etiologies of some skin conditions, I strongly believe that many morgies are unaware of, in denial of, completely brainwashed out of (God only knows the whole story each one of them has),
realizing that they have
inflammatory connective tissue disorders, which are autoimmune diseases.
Regardless of who has what, some of them have obviously witnessed a cascade of what seemed to be unusual events, such as, granulomatous reactions, mucinous changes, altered connective tissue components such as collagen or elastic fibers, keratinous structures, sebaceous structures, inflammatory infiltrates, and necrotic debris, which were extruded at the surface of their skin through transepidermal elimination.
They think these are things of a parasitic nature, when it is all being produced by their own bodies, excluding the environmental fibers which they also can’t understand. If they can’t leave their skin alone, and take care of what’s causing it to react in such ways, surely they must know something else is wrong. Maybe that has something to do with them falling for “morgellons disease”. Okay, I’m thinking out loud now.
Ill states of health, and the various conditions triggering such events as that are shocking for anyone to go through, but how many of them actually have a pathological brain disorder?
Although we know what we read on lymebusters, that’s just as impossible to ascertain over the internet as anyone thinking they can try to determine anything else that they have wrong with them. It certainly appears as though there are as many possible problems there as with their physical health, though.
These people have witnessed unusual occurences in their skin, and have been so overwhelmed by it, that when they go to doctors that’s all they can talk about. That isn’t too hard to understand. To keep going to doctors, many of them seeing more doctors than the average person
could ever see in several lifetimes, repeating the same mistakes with each one, does not make any sense. Nothing any of them do makes a lick of sense. They’re all in dire need of a health advocate to go to a doctor with them, saying all the “right” things.
Thanks to mixed-up Mary Leitao, she further mixed up the minds of people who already had enough problems. I do hope that her little boy only had eczema, because I just can’t help envisioning the scenario at her home, with him, and the other two children.
I hardly see how one can help but ponder such things, even more so after it was printed in an article recently that she had made a cast to put on her poor little boy’s arm to study her “morgellons disease”.
The sheer insanity of narrowing down so many maladies to all be covered by one idiotic, conjured up, 400 year old “disease”; telling people to contact all the authorities; convincing them to purchase ultra-violet lamps and microscopes; directing them to a perverted version of a health support message board; spreading the propaganda through all sources of the media; and the careless prescribing of antibiotics to treat people with, being passed off as something honorable, is the ugliest, and the craziest thing I have ever heard of in my entire life.
People who believe in it, I know, are as deperate as desperate gets. It’s a very, very, disturbing and disheartening situation.
Crises are triggered when scientists acknowledge the discovered counter instance as an anomaly in fit between the existing theory and nature. All crises are resolved in one of three ways. Normal science can prove capable of handling the crisis-provoking problem, in which case all returns to “normal.” Alternatively, the problem resists and is labeled, but it is perceived as resulting from the field’s failure to possess the necessary tools with which to solve it, and so scientists set it aside for a future generation with more developed tools. In a few cases, a new candidate for paradigm emerges, and a battle over its acceptance ensues – these are the paradigm wars.
The presence of a paradigm war does not mean the new paradigm is correct. In fact, in science, the vast majority of newly “discovered” paradigms are incorrect.
When the body is assaulted, a healthy immune system reacts appropriately. Sometimes observed reactions may appear to be quite strange. Yet the immune system has been instructed on how to respond to various circumstances.
Sometimes different circumstances, with two different people, can lead to very similar immune responses. Although the immune system may have performed the same way many, many times, if this is the first time the response is closely observed, a normal response may be thought to be quite abnormal.
One such response is the production of a granuloma when members of the immune system encounter foreign material. If it cannot consume the material it will wrap it in fibers and encapsulate it like a coccoon. These fibers are called fibroblasts, and the process is quite normal.
This can occur when the body becomes highly toxic. In one individual it may be caused by kidneys that are malfunctioning. In another it may be because toxins are being injested at such a high rate of speed that normally functioning kidneys cannot eliminate them. In yet another, the foreign material may have entered through the skin.
Although the reaction is the same, the causes of these reactions can be quite different. Without a proper understanding of the immune system, it’s very easy to come to false conclusions. Thinking outside the box doesn’t necessarily turn one into a scientist.
“…and so scientists set it aside for a future generation with more developed tools.”
Yeah, and this is the year 2006.
Tell me, “PLEASE” if you can, abac68, where the relevance to any of this lies, and why so many morgies look down upon doctors and scientific researchers with such complete distrust, disgust, and disapproval, as though they are doing nothing of value to mankind? No, really, I’m dead serious. What is it about the mindset-of-a-
Seriously, what is up with all this unrealistic talk about “treatments-versus-cures” for things?? I see such a prevalence of that talk among morgie people!! Such “blame games”.
What is it that makes some people obsess over fibers in sores, present to doctors that way, and their “REAL” health problems, many of which are quite serious, don’t get looked into because the patient totally goofs up with their presentation and therefore, they get dismissed as a result and they never learn any lessons from any of it?
COME ON, I see too many morgies writing that they know exactly what they’ve been diagnosed with, and yet this bullcrap lunacy of “morgellons disease” has them all brainwashed. A lot of them are even treating for what they have the whole time, but backing off on their regimens if any amount of improvement is shown, so they have to start back again. I’ve read it all too often in those who are treating for Mycetomas, and that IS NOT the way you treat Mycetomas!!!
The largest percentage of morgies don’t want to heal, and keep on doing things to keep the immunity of their skin screwed up, while thinking they are killing things that are byproducts of their own body and their immune system functionings.
They will not get onto a healthy program to benefit themselves, not even caring to learn what they need to do to bring things into balance, when the majority of people who haven’t any problems with doctors, but just want to be as healthy as possible and to avoid illness, and doctor visits, DO what needs to be done to assure that. This element totally and entirely does not add up!!
Now, just look at how this “morgellons disease” lunacy began, and how it gained momentum, and why. Too much fear and paranoia has been unleashed and run amuck, and way too much blindness and complete denial to the truth for each person, singularly, and as a group, exists.
It’s way out there in “la-la-land” what I read about the overall mindset of morgies wanting to impress upon a group of new med students and doctors to get out of their realm of work, and move over into something outside of things, that morgies feel they should be doing. That is so ridiculous.
Researchers are doing their jobs, every day, of trying to find cures for things!!! Good Lord, when I read that type of stuff, all it reminds me of is a group of small children using their imaginations to create a game to play.
If that is not “delusional thinking”, I beg someone to tell me what the heck society can possibly call it? Yeah, feed that lunacy back to me, in the process, like so many have, that I’m brainwashed by western medicine, too. Nonsense. Pure nonsense.
Quotes from past Reno News articles, from the one who spawned this ugly, stupid thing…
“‘They are so smug and sure they are right,’ she said.
‘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.’
Other parents of Morgellons’ patients said their children also have been diagnosed with common skin conditions, but if the parents also report symptoms they get the DOP label.
The textbook diagnosis…
Medical textbooks and journals warn that when a patient visits a doctor with samples of ‘parasites’ removed from their skin, it’s usually an ominous sign of mental illness.
Leitao and other members of the Morgellons Research Foundation said they will continue to put a spotlight on the problem and demand a scientific investigation into the illness.
The saying is ‘the disease is the patient,’ she said. ‘Only those willing to look outside the book move from technician to scientist.'”
Now, really….I know that people are sick, so don’t think for a split second that I don’t. But what is REALLY the cause of their symptoms is WHY they are sick…
NOT a 400 year old notion made up in the new millenium by Mary Leitao, called, “morgellons disease”.
In my opinion, morgie people are in dire need of health advocate assistance with the assigment of someone to do their patient/doctor communicating on their behalf.
Morgies subconsciously set themselves up for failure because they know they need “Morgellons Disease” as a crutch.
Bugsalive and Adapted.
Replying to your own Blogs?
I pity you because God forgot
about you long ago. Do these
posts come from a HAPPY place?
Do you feel you’re doing God’s
Does God want you to wake up
feeling empty and spend each day
propping up your oh so fragile
reasons for living by attacking
Are you saving people?
You can’t even save yourselves.
I pity you because we will have
our day and you know it.
Your efforts are failing and you
are just putting off the inevitable
breakdown of your tragic world.
Seek help while you can.
Here’s a report of more delusional
Smilykins in reply to your comment:
Tell me, “PLEASE” if you can, abac68, where the relevance to any of this lies, and why so many morgies look down upon doctors and scientific researchers with such complete distrust, disgust, and disapproval, as though they are doing nothing of value to mankind? No, really, I’m dead serious. What is it about the mindset-of-a-
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It is becoming more and more evident tall cotton and smilykins that you are both very angry people.
Your continual attacks at Mary Leitao and her children are a down right disgrace.
You are not interested in a newly emerging infectious disease.
You are only interested in being malicious.
As I have told you before – I do not live in the USA. Many sufferers in this country have caring and compassionate doctors, but unfortunately doctors can only do so much. It is not their fault if they are ‘uninformed’ or can only work within the guidelines set down by our health departments.
Many sufferers in this country have learnt about ‘Morgellons disease’ from their own doctors. So our doctors must be delusional also?!!
The rest of the world is waiting on your government.
I add thoughts to Michael’ blog as they come to me. Now, Whatsyouragenda, what is this place that you’re coming from, as well as a abac68?
I challenge each of you strange people to define this PERSONAL bone that you have to pick with me, “PRECISELY, in no uncertain, terms, and struggle with the concept of acting like an adult, and taking it to OUR blog, and let your childish antics run free there.
God forgive me, but I don’t give a flying fuck where you come from abac68.
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Michael – you claim to be a retired computer programmer – but a Dermatologist is much more fitting for you.
You also keep attacking Mary Leitao. I do not understand why any compassionate human being would even go down this path – other than – a Dermatologist. A Dermatologist who refuses to look outside the box.
The skin manifestation of Morgellons Disease is very unique. It is not an everyday skin infection – ‘it becomes the skin’.
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Posts are still being deleted!!
I was the first person to ever coin the word, pseudo-skin. Don’t tell me I don’t know what it is, and don’t tell me it’s part of a disease process. Learn a little bit about your immune system, then you will understand how “it” becomes your skin.
Mary Leitao may have received a passing grade in school, but she’s certainly no biologist. By the way, if you should ever have your day, which you won’t, it’s no sweat off my back. I could care less.
Really now, both Whatsyouragenda and abac68, if you haven’t the capacity to understand things and you’ve fallen like so many other misfortunate people have for Mary Leitao’s mythical “disease”, is there anything good that you’re getting out of it?
Is there anything unreasonable that I said about morgies needing health advocates assigned to them to address their doctors?
Frankly, abac68, I see the majority of American morgies writing that they don’t share the idea that you have formed about doctors over here. Far from it. Way far from it.
We have excellent doctors, but not in the minds of morgies, we don’t.
I acknowledge that people are ill, and I acknowledge they need assistance. What more should I be doing to make the two of you happy, and why should I be doing it?
In my opinion, if people continue on this way, someday there may need to be inpatient treatment facilities implemented into the healthcare system, for people who have no one to assist them with this.
I stand firm in my opinion that it all stems from “misunderstandings”,
failure to effectively communicate with physicians, and then, from the desperation of such people to be gullible enough, through no fault of their own, to fall for the agenda of a woman who felt she needed to establish a name for herself. She had her “own” problem.
Look up morphea, also know as localized scleroderma, if you want to try being reasonable in attempting to sort out and narrow down your problem. A doctor is what you need, but if you won’t go that route, or if you can’t….stop chasing a myth that leads to further distruction. There is no “morgellons disease”. You’re sick, yes, but not with that!
abac68 says, to Michael…
“You also keep attacking Mary Leitao. I do not understand why any compassionate human being would even go down this path – other than – a Dermatologist.”
I don’t think so.
I’m being totally free and open in exposing the way she got this whole thing started, over little Drew’s eczema with fuzz stuck in it, and all the rest I’ve come to learn, but I don’t see where Michael has been throwing off on her.
I’m not repeating anything that wasn’t already made public, either, but I’m sure adding my emotions to it.
I am an overly compassionate person, as I think anyone who’s involved in this blog is.
You mentioned my anger, abac68? I’m happy as a pig in mud, but when it comes to things that are wrong, such as all this business of “morgellons disease”, and the way it’s caused people to become so much more derailed…you’d better believe I’m passionate about it, and madder than hell.
abac68, when it says “this post has been deleted by the author”, that means that the person who wrote the post has withdrawn it. Not that I have deleted it. When I delete posts (which I have not done for several weeks), they simply vanish.
And, I really can’t fathom why you think I’m a “derm”. I’m not. I am what I say I am. But who I am is irrelevant – you should rather expend your energy on criticising what I say.
Wow, some of you really ramble a bit much. Mary, wrong verb–you’re not passionate, you’re obsessed, only now it’s from a different angle.
“Science works” you claim Michael. How many times have we heard not to do such-and-such because science has proven that it is bad for us (i.e. breastfeeding in 1950’s – 60’s). Then years later they claim the opposite is true. I can think of many medications for which the opposite is the case (estrogen from postmenopausal women/phen fen for weight loss). I believe we should try to understand this disease from a scientific perspective, but let’s not pretend that science is without error; after all, the scientific pursuit must be done by humans.
Here’s a good quote:
“Science is a human endeavor, subject to human imperfections. At one end of a spectrum covering what would generally be considered poor science we have those who intentionally deceive. At the other end are those who have the best of intentions but, for some reason, produce flawed results. Somewhere in the middle are those who have some knowledge of the topic they are investigating, but not enough to produce results that will stand up to scrutiny.”
I’d have to say of all the biases to throw into a scientific endeavor, a belief that the afflicted suffer from a delusion would pretty much close the door. Let’s not forget that we haven’t finished learning all that there is to learn yet either. Don’t be so bold (or foolish) to say that we have.
Everything you say on this blog comes from the perspective that the people who have the symptoms described in the MRF site don’t know what they are talking about. This is a very presumptuous position to take. I have most of the symptoms described on the MRF site. So far, no doctor has been able to understand why I have these symptoms, although I am still investigating. I haven’t decided that it is a novel organism either, but it sure seems unique. I don’t think you all prove anything in this blog by pretending that the people with these symptoms aren’t ill with real conditions. It is the similarity in the uniqueness of their symptoms that draws them to each other; nobody else can offer advice because they don’t know what it is. We are stuck with the tried and true remedies. In any group with people as desperate as these, they will be some outspoken persons who suggestions should not be followed. When a drug pusher tells me how great meth is, I don’t follow him either. Most of those suggestions are met with silence because nobody intends on following them, but we feel it is presumptuous to tell them what to do. What works for them… I have found garlic to be the most helpful with my symptoms. Does that offend this pompous bunch? How about Omega 3’s, alove vera juice, and a healthy lifestyle? Somehow I believe that my suggestions may not make Michael top ten list because there is no sensationalism factor involved. I’d advise you give up that diet coke too jeeezlouise and try a treadmill. I don’t do coke, and certainly not diet coke.
Be thankful I’m not in your life, or you’d see things for what they really are, and that, I’d guarantee.
It’s natural to not see everything a person posts on certain sites they frequent, but I’ve repeated myself enough on the topic of how I ended up on Lymebusters’ message board three years after the fact.
I’ve said how I told my experience in hindsight; how I attempted to fit in; how I saw nothing could sway anyone’s opinion; how I attempted, with my sweetie, to distract sufferers, to hopefully get some to not think of their misery, if only for a few minutes a day, through creating imaginary places and talking about politics, like the Malt-O-Philia Malt Shoppe down on 4th and Drucker Street.
It was pointless to try finding a way of reasoning with anyone, so we gave up, but there’s never been a time I’ve looked at anything pertaining to the non-existence of “morgellons disease” from a “different angle”.
When trying to communicate something to people who have such unique problems, one can’t just go about being straight-talking, as one would under normal circumstances.
Try to stop fixating on me, and please try working on this instead…
I post comments on Michael’ blog, with other adults who know the score.
Reading here was instrumental in serving Jeezelouise well… although not being an easliy influenced person was the most major thing…and that’s what the intention of this blog is…
…not to try penetrating minds that are hard-wired.
Aherah, I think you misunderstand me. I think this because you seem to be ascribing beliefs to me that I do not have.
I don’t think “science is without error”. Science is chock full of errors. In fact the entirety of science may well be slightly wrong, seeing as how science only provides us with models of reality, rather than reality itself.
When I said “science works”, I was referring to the ability of science to accept new paradigms if there is sufficient evidence. I was also referring to the scientific process in general, where observation, experiments, hypotheses and tests all have a place in usurping paradigms, correcting errors, and occasionally creating new errors.
I certainly do not think “that the people with these symptoms aren’t ill with real conditions”. I’ve said many many times, that I think “morgellons sufferers” are really sick, with a variety of illnesses. I just don’t think they all have the same thing, and I don’t think the “fibers” are meaningful evidence, and I don’t think there is any evidence of a new syndrome.
My position here is actually clearly stated at the top of every page of this blog, with links to explain in depth.
Can you actually state one real claim of mine that you take issue with, and we’ll debate from there?
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I doubt there is a true Morgellons disease. Why? Because of the culture (featuring paranoia, hostility, self-abuse, and compulsive behavior)that typifies the Lymebusters site.
I can’t imagine why anyone with a disease like Morgellons would support that board. Lymebusters has an un-organized approach to promoting and defining the alleged disease. This results in a huge range of symptoms, from fiber-filled lesions to teleporting insects. I would be more concerned about Morgellons– more worried that it might exist– if the majority of sufferers did not seem to be dependent on group-think.
There are clear examples of delusions on the Lymebusters board. Some-one at Lymebusters claimed that bugs were transmitting themselves through metal and glass, infesting the sealed jars of food in their pantry. Plenty of people posted to support the idea, but no-one said, “I do not think this is possible. You may have become so upset by your skin problems that you’re seeing fibers and insects in places where they do not exist.” Surely there are some people who feel this way– but they can’t speak up. They know they’d be punished for voicing their opinion. This atmosphere is not helpful to people who want to identify the nature of their disease without including every extreme claim. Therefore, I do not understand why anyone with an actual case of Morgellons would go to the site. If there is an actual Morgellons disease, Lymebusters has helped it to be hijacked by extremists.
1. Who came up with “morgellons disease”?
2. What led her to?
3. Who did she appeal to, and how?
4. How did she compile her “case definition”?
5. What does she instruct people to do?
6. Why do people fail to see the reality of the situation?
No, we havn’t finished learning all that there is to learn, but some things are quite obvious. One of those things is the fact that most Morgies are delusional. Sure, many of them are sick, and suffer “some” of the symptoms listed by the WTF Foundation, but they are still quite delusional in how they interpret their experiences.
I don’t know whether or not there are any Morgies that know what they are talking about. It’s obvious, however, that the percentage is insignificantly small. As a rule, the message boards of the Morgellons “believers” just don’t attract people with IQ’s that are very high, and their members are generally also lacking in common sense.
The symptoms listed by the WTF Foundation for “Morgellons” are anything but unique. Most, if not all, of the symptoms are those of lyme disease. Most doctors don’t understand these symptoms because the study of lyme disease is relatively new. But many of these “sufferers” have other problems and simply will not listen to their doctors. Nor will they take the necessary steps to improve their general health.
These people are drawn together for many reasons, but intelligence is not one of them. If anyone doesn’t want to be thought of as being crazy, perhaps they should consider finding a different group of people to associate with besides that of Lymebusters, Nuspa, and yes, even Biology Online. “Outsiders” are very concerned with the harm that these groups are doing. It’s obvious that these people have emotional needs that are not being met in a healthy manner.
Some people think they really have it together because they don’t do meth or other illicit drugs, yet they poison their minds by with lies and misunderstandings. A few ride the fence, believing themselves to be above both the Morgies and the Naysayers, ready to bail off on either side as the end approaches. These people should create their own message boards for people that stand for nothing, believe in nothing, and look out for no one but themselves. They’re the sickest of all.
This debate wouldn’t happen easily in an electronic forum. And, to tell the truth, I’m simply too busy to fuss with it (remember, I have three small kids–no nanny). Correct me if I am wrong, but I don’t recall you ever mentioning if you had actually spent any time with a person who claims to have Morgellons. Seeing is believing. If I sound offended on several occasions, it is because I am. I find you all ridiculously presumptuous to the point of being unethical. I think Bugs and Adapted are working out their own issues by ranting on this blog. Perhaps trying to redeem their sanity. Not all people who believe they have Morgellons loose their mind to the extent that Bugs did, but this circumstance certainly presents a bundle of psychological challenges.
Again you don’t know me, but, Michael, you have said on more than one occasion that I sounded like a reasonable person. Keep in mind that reasonable people look for every other possible explanation before they succumb to the one that scares them most–the freakishly unknown. I have and continue to look for explanations that fit into the worldview in which I was raised which didn’t include chemtrails and aliens. Nonetheless, I know that the fibers/fuzz and other matter are not dust, I know that my children have this, and I know that it is not beneficial to our health to have it. We can’t fix my family or me until we can admit that something fibery is awry with our bodies. We have to acknowledge that something needs to be investigated before it is dismissed, as you do. In that respect, Michael, you are doing harm. You don’t really know what is going on with my body or anybody else’s body; you shouldn’t stand at the pulpit and pretend that you do. You just don’t KNOW that it is dust–you simply BELIEVE that. I KNOW better.
I don’t know if you are also a reasonable person, Michael, because I don’t find this poking of fun at sick people (mental or physical) a reasonable, scientific act. Now, I know you will take issue with my use of “poking of fun.” I have every right to call it how I see it, just as you have been doing.
I am interested to know how would you respond if you had an illness that caused you to itch for years on end, turning your skin into a roadmap of scars; you discover that you have passed this disease on to the people you cherish the most; and no medications that the doctor has given you seem to help the situation. To make matters worse, some doctors throw their hands up in the air and just call you crazy, absolving them of having to bother with you any longer. There you are, stuck sick, feeling responsible for passing this scourge on to your loved ones, and nobody with the ability to help gives a s__t.
You become thirsty for explanations, however bizarre they may be. You become desperate for treatment, however harmful it may be. You become angry that you have been abandoned at such a precarious time in your life by the people who vowed to help you. You become Lymebusters. Oh no. I’m sure you all would do much better for yourselves; you’re just so much better than that.
I may be speaking into a void here. Is there compassionate life out there in blogland? Is anybody getting this?
Since you’re still fixated on me, let me bring you up to date. I believe that I finally “got it” last night, Aherah. That’s what I’ve been trying to do, off and on, ever since learning of morgie people, last February. I may, or may not, be right about it but I posted what I discovered, through looking at some old messages at Lymebusters, under the topic, “Physical and/or Mental”, on this blog.
Since you’re very fixated on him too, Bugs Alive never lost his mind. He was in a coma and nearly died from a brain hemorrhage, but I assure you the man has all of his mental capacities well intact, much more so than the average person.
Now, little girl, you find us “all ridiculously presumptuous to the point of being unethical”…
No, you get “offended” when nobody is even saying anything about you. Something gets triggered that causes you to lash out at people personally.
With the way you are, if I knew you in real life, I’d go along with your blue-fiber legs just because of your argumentative nature. You’ve got the worst case I’ve ever seen, seeming to want the world to run only according to how you want everything to be.
Incidentally, I’ve had lifelong skin allergies, so in the past I’ve had lots of dealings with doctors, for myself, and for my child. Anyone thinking it’s something easily dealt with and quickly resolved, is badly mistaken, and you have said that your doctor had said skin allergies, before.
I think you could really feel a lot better, maybe, from an antidepressant, or an anti-anxiety medication.
This debate wouldn’t happen at Lymebusters at all. That is because opposing viewpoints are quickly deleted by their moderators.
I’ll be the first to admit that it would be hard to live with someone that claimed to have Morgellons. Do your children also claim to be diseased, or is that only Mother’s claim.
You talk about your Mother and Brother agreeing with you. What about your husband? Does he agree, or do you also argue with him about Morgellons?
If you find your own body so “freakishly” mysterious, why don’t you spend some time trying to learn about it instead of wasting your time trying to convince people of your sanity? Wouldn’t that be a lot easier?
It must be terrible having been abandoned, especially if it was at an early age, but continuing to have more children isn’t the answer, especially since you feel so guilt ridden from the belief that you keep passing a horrible disease to your babies
Yeah, Bugs Alive was pretty crazy, alright. But he got better. You should find that encouraging. You can get better too. It begins with the realization that the brain is just another part of the body, and it can get sick too.
Don’t let it throw you that the things you imagine seem so real. Close the door on Lymebusters and put an end to the insanity and you can get well too.
Quit looking so hard for for understanding. Get well first so you don’t find yourself surrounded by a bunch of crazy friends.
Lymebusters is keeping you sick!
Actually, the response wasn’t meant for you, so fixated…hardly; you’re just a peculiar footnote. I typically don’t even read your haranguings. I’m sorry to hear that bugs/tall cotton was ill. What caused the coma?
No, I never said anything about having skin allergies. I said I was tested for allergies which indicated that I was only mildly allergic to peanuts. I’m quite sure I am allergic to whatever is causing these symptoms though. It just too bad there isn’t a scratch test for that though, eh?
Do you recall when we discussed on Lymbusters how Lupus was probably caused by an infectious organism hiding in the tissues, confusing the immune system. Do you still believe that? Do you have Lupus? I hope all is well with you and your daughter in any case.
Oohh, now who’s being combative.
“This debate wouldn’t happen at Lymebusters at all. That is because opposing viewpoints are quickly deleted by their moderators.”
I disapprove of deleting, if that were the case. I know that Michael has deleted me on more than one occasion for no reason other than he didn’t want any corrections or suggestions to his blog.
“You talk about your Mother and Brother agreeing with you. What about your husband? Does he agree, or do you also argue with him about Morgellons?”
There is no argument anywhere from anyone. My mother, my brother, my father, my stepfather, my stepmother(s), my husband…don’t “believe” this is real. They know it as I know it. They have all been witness to what’s going on.
“If you find your own body so ‘freakishly’ mysterious, why don’t you spend some time trying to learn about it instead of wasting your time trying to convince people of your sanity? Wouldn’t that be a lot easier?”
Are you suggesting I become obsessed with my condition, purchase any number of high-powered microscopes and take multiple pictures. Should I analyze, dissect, and report my findings in minute detail. Should I also become consumed with trying to interpret medical information of which I know little. I HAVE NO DESIRE TO TURN INTO YOU BUGS ALIVE/TALL COTTON. I’ll just support Dr. Wymore, but thank you for that suggestion.
“It must be terrible having been abandoned, especially if it was at an early age, but continuing to have more children isn’t the answer, especially since you feel so guilt ridden from the belief that you keep passing a horrible disease to your babies”
Being abandoned by the medical community as an adult with an illness is not the same as being an abandoned child, which I wasn’t. I wonder, why do you choose to misrepresent my words? I had three beautiful children not realizing that the strangeness with my body was an infectious condition. I didn’t know I could give them this, or else, I probably wouldn’t have had children. I do love them to death though. My adorable two-year-old little girl has the ability to make me temporarily forget this whole god-awful mess with her playful, happy nature.
“Yeah, Bugs Alive was pretty crazy, alright. But he got better.”
I’m truly glad to here it. Best of luck to you Bugs.
“Lymebusters is keeping you sick!”
I pay no allegiance to Lymebusters or anyone there. I use it when it offers something of value. I don’t even think that the moderators have appreciated many of my posts either. I don’t care. I have made some friends, perhaps, but it is not as if we hang-out. If you knew me, you’d know that I am my own person; I don’t follow anyone.
Sorry kids. Got to get back to life.
Aherah, what you have is very real. Your symptoms are caused by something, maybe a collection of things. I have no idea what it is, nor have I ever claimed to know anything about your case.
My blog here is not about attacking people and telling them that they are not sick. They obviously are sick, and they need treatment. My blog is about how there is not any evidence that there is a new disease (Morgellons).
Maybe you (Arehah) have some new undiscovered disease. It’s possible, and you seem convinced of it, but I’ve not seen any evidence. A collection of unusual symptoms does not a new disease make. Several people have to have the same symptoms. Lots of people.
There are not lots of people on Lymebusters, maybe 20-30 active participants. The have lots of different symptoms. One common trait is the “me-toos” for the symptom-de-jour (currently ears growing unevenly).
I think there is some truth in what Smileykins says – that Morgellons is a reaction to not getting satisfactory treatment by a doctor.
You ask how I would respond to untreatable and undiagnosed severe itching. Sure I’d be unhappy – but I’d eventually recognize that millions of people go to the doctor every year with unexplained itching – which is never diagnosed. I’d recognize that this is not Lorenzo’s Oil, I’m not going to devote my life to a probably futile search for a “cure”. If the doctors can’t find the cure, then it is very likely that I cannot. I would make reasonable efforts to continue to get well, but I’d manage the problem, and get on with my life.
“My blog here is not about attacking people and telling them that they are not sick. They obviously are sick, and they need treatment. My blog is about how there is not any evidence that there is a new disease (Morgellons).”
Michael, if you recall, I don’t say that it is a new disease either. I admit that I don’t know. It’s not as if anyone is checking us/me for known yet unusual diseases. Actually, for quite some time, nobody has been doing anything. It is very difficult to establish if we are dealing with something knew or if we are dealing with something known but unusual until somebody takes the time to investigate.
“Maybe you (Arehah) have some new undiscovered disease. It’s possible, and you seem convinced of it, but I’ve not seen any evidence. A collection of unusual symptoms does not a new disease make. Several people have to have the same symptoms. Lots of people.”
I don’t disagree that many people have symptoms that correspond with many other diseases; this is why misdiagnoses are so common. The doctors aren’t necessarily malicious–an educated guess can often be wrong. I don’t know that I have some new undiscovered disease; I can only know that I have fibers, etc. materializing from my flesh and that this phenomena is associated with some extremely uncomfortable sensations. You can’t “seen any evidence” of anything if you aren’t looking now, can you? Seeing is believing.
“Sure I’d be unhappy”
I’m sorry I just have to snicker at that one. Yeah, it’s kinda sorta a bummer, that’s all.
“…but I’d eventually recognize that millions of people go to the doctor every year with unexplained itching – which is never diagnosed.”
I recall telling you that when the fibers were insignificant and the itching minimal, I took a similar stance (don’t make a big deal and maybe it won’t bother me). It is more than just itching now. Perhaps if you were infected with an organism that was in the process of destroying your life, albeit slowly and inconspicuously like a smart adapting organism that wants to find more hosts, you’d sit back and watch yourself become progressively sicker. You’d live with the discomfort and strange sensations because “everybody has them.” Everybody dies too. The difference between you and I, then, is that I would like to do everything possible to avoid that inevitable summary until a time when women my age are supposed to die. I just don’t see how this thing can’t progress into something more serious; you see, it is more than just a little itch, as I have said over and over again.
None of your comments have ever been deleted…
Neurotic Excoriations and Compulsive Skin Picking
At 11:40 PM, upnapishtim said…
At 11:58 PM, upnapishtim said…
(Those are the two that you have told people at Lymebusters were.)
I should add, Michael, that there are now 4,100 some odd families registered to the MRF. How many people post on Lymbusters? Of those that post on Lymbusters, how many make the claims you find so unconventional? In all, we’re talking a small portion of the people who claim to have Morgellons (ten to twenty at most). Futhermore, I believe the “ears growing bigger” is being attributed to swelling. Certainly swelling isn’t uncommon or weird, is it? We know that it is not uncommon to people who believe they have this condition.
You can twist the words to mean what you want them to mean–that doesn’t make you more correct, just a good spindoctor.
I know that you are having cognitive difficulties so I’ll repeat what I stated earlier.
“If you find your own body so “freakishly” mysterious, why don’t you spend some time trying to learn about it instead of wasting your time trying to convince people of your sanity? Wouldn’t that be a lot easier?”
There’s a big difference between suggesting that you try to learn about your body and suggesting that you become obcessed with. You are already obcessed with it, but you seemingly aren’t learning anything.
You said, “Perhaps if you were infected with an organism that was in the process of destroying your life, albeit slowly and inconspicuously like a smart adapting organism that wants to find more hosts, you’d sit back and watch yourself become progressively sicker.”
I know that the previous statement wasn’t addressed to me, nevertheless, it wasn’t sent to Michael in a private email so I have something to say about it. It’s no wonder that you are frightenend with beliefs such as those. Please try to understand, and please try to relax. There is no Morgellons organism, and there are no Morgellons symptoms. You’re itching, not dying.
“You’re itching, not dying.”
Funny, Bugs, I don’t recall that you were in a position to diagnose. Have we met? We’re all dying; it’s just a matter of when and how. I’d just prefer mine be later than sooner, and I fear for my kids. You know nothing of our symptoms other than the itch, or you, like Michael, conveniently tune them out. Seems to me you should focus on maintaining your own “recovery.” 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.
Reasonable people don’t lie to themselves when reality smacks them in the face, but I understand that you had to save your mind.
“There’s a big difference between suggesting that you try to learn about your body and suggesting that you become obcessed with.”
Your statement presupposes that I don’t know my body. If that were the case, I wouldn’t recognize that something wasn’t right. Define “obsessed.” I don’t believe my concern fits most people’s definitions of obsessed. You were obsessed, and as I have been saying all along, your experience is not mine. Perhaps there is dop and there is Morgellons. Perhaps you were dop and perhaps I have Morgellons. You can only be sure about your experience, not mine.
It’s my understanding that the mission of this blog is only to do what no one else has taken any time to bother with. It’s not actually meant to be a place to analyze and address malicious, personal advice seeking “morgellons victims”, but be that as it may.
To borrow some words that belong to Jeezelouise, which are demonstrative of the goal…
“Only *ONE* site I visited that evening – Morgellonswatch – did NOT suggest that my symptoms could be this horrible new plague.”
“I can EASILY see how a more suggestible person, with chronic unexplained itching and rashes, sitting in front of her PC that evening and reading all those ‘personal accounts’ of Morgellons, could begin to wonder if maybe that’s what her problem is. I can EASILY imagine that person picking up a magnifying glass and finding “fibers” on her skin. In other words, I can EASILY see how a simple case of chronic hives can turn into Morgellons.”
If Lymebusters isn’t meeting the needs of such persons, and they refuse seeking the proper assistance in their journey through life, I believe a quest for another alternative is in order. I don’t think anyone here is capable of fixing anyone, or of being bothered with it.
I think you should change your name to Pinocchio.
I first had symptoms of Morgellons, replete with fiber/fuzz samples, in 1992. There was no Morgellons Research Foundation or lymebusters to pollute my thinking. I knew of no other who had my symptoms.
Here’s a good book:
Plague Time : The New Germ Theory of Disease
I’m sure you’ve seen the commercials now that discuss how HHV-6 is linked to certain types of cervical cancer (they tell you to go get checked). I think HHV-8 is also linked to prostrate cancer. This is my concern. Wouldn’t it be a shame if something similar were the fate of my family and I when all we needed was a good dose of antibiotics?
I repeat, wouldn’t that be a shame?
To the best of my knowledge, I’ve never participated in any discussions on the topic of Lupus. Genetics (heredity), as well as particular environmental exposures, are what I believe to be the cause of it, the same as any other autoimmune diseases. I’ve never believed an infectious agent is to blame, but, of course, secondary infections can occur.
Unless I’ve been confused with someone else, the only thing that’s remotely possible, is that I may have said that during the state when I’d been so ill, that I may have speculated I’d had Lupus, then, but that due to the weird things I’d witnessed, I ruled it out. I’m sorry, but I just don’t know of anything that could account for the misunderstanding.
Aherah, I agree that Lymebusters is a small, unrepresentative, and disproportionately vocal, sample. But the question remains – why does MRF recommend Lymebusters? What does this say about the credibility of the MRF?
MRF DOESN’T recommend Lymebusters.
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Lymebusters is a support group. Even you, Michael, said that you would seek ways to assist yourself if you suffered from such a condition. Are you saying that nothing posted on lymebusters is ever of value? Ever? All of the immune boosting, healthful living suggestions are bogus? (or just not interesting enough to blog about) I wasn’t able to find the link to lymebusters at the MRF, so perhaps they no longer direct people there, but even if they do, how does that make them responsible for what people post? If I direct you to the library to find some books on human anatomy and you choose to study this topic through pornographic sources, is that my fault? Isn’t it up to individual discretion to weed out the b.s., which permeates every element of our society not just lymebusters, from helpful info? Again, ya’ll are acting like a bunch of pompous Greek Gods peering down upon and judging the ignorant mortals. Here’s some news—you’re not gods.
I believe some people could use some counselling and/or pharmaceuticals, from the sound of things.
You’re the one that gave yourself the name of the Phoenecian/Mesopotamian Mother of all Wisdom and Prophetess of Universal Law. What a joke!!
Is the pot not calling the kettle black? Or, as a Morgie recently put it, “Is the CAT not calling the kettle black?”
In Iranian stories, Aherah could walk on water, gave birth to over 70 dieties, and taught to people the arts of carpentry and brick building.
By the way, the symbol for Aherah is a “wooden pole”. I’m not sure whether that represents a fence post, or Pinocchio’s nose.
It’s too bad you have to rely on childish games to avoid answering the questions. You two have so many buttons, trying to discuss anything on this forum is like playing a video game.
Tall Cotton, reformed Master of Morgellons, why do you still bother your tortured psyche with this disease? Why is it you can’t leave us alone? Addicted maybe?
Respectfully yours (ring a bell?)
Tall Cotton (has your fuzz grown tall?), you seem to think I have lied about something. What have I lied about? Do you just throw around accusatioins to discredit people, or do you actually have something to back it up?
Show me the money.
You’ve been told, over and over. Go back and review!! Oh, by the way, you came here. We didn’t go to there! Everything else is none of your business.
“I believe some people could use some counselling and/or pharmaceuticals, from the sound of things.”
That’s a pretty vague statement. Many people in the world could use some counseling, even the counselors. I think pharmaceuticals are a profitable business. They like people, like you, to push their drugs–it’s pays. I’m not against medication when it is for the right reasons. We need to make sure we’re using the right medication for the right problem. I don’t believe in throwing drugs at a person to provide a variety of temporary bandaids.
Oh golly, gosh, gee whiz. You mean I’m not popular with the schizophrenic (you did admit to having that diagnosis once) who thinks WE are crazy? Bugs, why can’t you answer my questions? Are you people all about making accusations but not about having them challenged? Hmmm…that’s not how Michael presented it. O.K., I’ll go. It’s just that I thought we were attempting to arrive at some semblance of Truth. I didn’t realize we had to arrive at your version of truth. Socrates would not be pleased.
Now you can continue to stroke each other uninterrupted (by me anyways).
The regular people who particpate and share similar views on this blog are not in need of diversions. I just made reference to this “typical morgie reaction”, once again, under the “Physical and/or Mental” topic when it was commanded yesterday.
Literature advises not reinforcing the beliefs of someone suffering from delusions, as we all well know, as well as the geniune fact that there is no way that a person can be talked out of them.
The transparency of the causes contributing to the fixed beliefs of persons who think they have “morgellons disease” is so very manifest in how they relate to others.
Depending upon the cause, there’s an unrealistic sense of persecution, and even though it’s unhealthy, there’s also this element, for some people, of seeking ways of getting attention any way that they can, even when it’s not in their best interest to do so.
For those with attention-seeking behaviors, negative attention is no different from positive attention, to them. They only need center stage, to be the focus.
While most of us realize we can seek positive alternatives and/or diversions to solve any problems we face, it isn’t that way for all people. What do regular thinking persons do in such cases as this?
Reinforce the behavior, I suppose is what we do, in order to make them feel better. The original purpose of this blog is evolving, as well as the recent shift in my opinions on the topic of “morgellons disease”.
Ne permettez pas au bouton de porte de vous frapper dans l’âne quand vous partez.
I’m not accustomed to dealing with such a person as this one calling herself Aherah, playing her game of “pushing buttons” as she claims to be doing on this forum.
She’s continuing her sport of taking things that Tall Cotton and Smileykins have said, which she’s misinterpretted, to play a game she hopes will elicit a negative reaction.
For the sake of clarity, I attempted responding to a falsehood she attributed to me yesterday. To address her malicious accusation against my fiancee, Tall Cotton, he’d said at one time, that he was misdiagnosed as having schizophrenia, but she missed that part. He’s a vietnam vet, and it was PTSD.
Anything either of us has ever revealed about ourselves, we wouldn’t, if we had a problem with it. Anything either of us has said, we stand by our word.
I feel that if a morgie person chooses to view this blog, and they’re not buying what’s being sold here, then it would be a good idea to question yourself for exactly what reasons you’re here for.
I know why I’m here.
I will say it again – the MRF website DOES NOT recommend Lymebusters.
Anyone with symptoms of Morgellons who choses to go to Lymebusters for – support, sharing of information, collecting of data and trying to join the dots, or WHATEVER! – may do so!!
Sick people who are incapacitated physically (which we are) want to be actively involved in trying to help each other, whilst Science and Research work on nailing down the culprit making us sick. No crime in that.
The ‘D’ word Delusion has been thrown around that many times over the years with regards to “Morgellons” – it is ridiculous. I feel a great many people are suffering from the other ‘D’ word – ‘DENIAL’, but there is nothing wrong with that – because denial can be a safe place, but unfortunately a lot of us are just not made this way and we don’t find ‘denial’.
Now is there something wrong with my credability by just stating the TRUTH?
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2002 –I was sick for two months; had crazy-ass symptoms; got over it
2005 — My kid wakes me up with the phone and tells me to turn on a radio talk show cuz the panel is talking about what I’d had 3 years before. Mary Leitao called it “morgellons disease”, and directed listeners to her MRF website, and back then, in February 2005, they had a link on their home page that took you to Lymebusters message board. They dropped the link when they upgraded their site, apparently. Does she not direct people there through email and telephone communications?
You, abac68, that person named Aherah, whatsyouragenda, and a few others, who have come on here showing their worst side, for obvious reasons, are the people who are hungup on credentials and credibility.
For some, truth is an impossible thing to face, and that’s understandable, given the circumstances, and no one is to blame for that.
abac68 – no, the web site does not mention Lymebusters. I was going by the email that Leitao sent to new members on April 30th. Read the actual post. Email me (firstname.lastname@example.org) and I can send you the original email.
“Why does the MRF recommend Lymebusters?”
Because they are all mad as hatters, the entire lot of them?
Most patients present with complaints of tiny insects or mites crawling under their skin, biting, tickling, or burrowing. Itching is seldom the primary complaint. Lesions may be present, although neurotic excoriation may be the cause. Other skin damage may be present, resulting from intense scrubbing (eg, steel wool, metal scratch pads) or use of harsh chemicals such as gasoline or bleach. In one study, 82% of DOP patients presented with “evidence” of their infestation that included tiny, nonharmful insects, dust, specks of debris, and skin or ear scrapings wrapped in paper or in jars or vials.
A consistent and diagnostic feature is the patient’s absolute conviction that he or she knows exactly what is going on. The patient may also be angry that his or her physician cannot even see, much less eliminate, the “bugs.” The medical history often has a persuasive, yet idiosyncratic, logic, and the patient may be so convincing that others in the family secondarily share in the delusion–a folie à deux.
Various events, such as sudden family bereavement, flooding, or exposure to parasitized persons or animals, have been cited as precipitating factors. Drug abuse may lead to DOP–one case was clearly attributed to cocaine use. Sometimes an initial and real insect infestation in the home environment triggers the delusion. For example, someone with an indoor pet that brought fleas inside the home may still feel mysterious biting long after the fleas have been killed by an exterminator.
“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.”
That sounds like the epitome a hero to people with the same illness, doesn’t it? The last thing people like this needed to have happen to them, was a made -up diseade.
To address some grave misunderstandings of skin allergies, and for those who may wish for the existence of a skin-test to determine them:
“I’m quite sure I am allergic to whatever is causing these symptoms though. It just too bad there isn’t a scratch test for that though, eh?”
Our doctors are adequately trained in their fields, without needing to obsess over their patients to arrive at a diagnosis. That seems to be precisely what all morgie people want from doctors, though, as bizarre as it is.
Severe atopic dermatitis is characterized by intensely pruritic, widespread skin lesions that often are complicated by persistent bacterial, viral, or fungal infections. The presence of keratoconus, keratoconjunctivitis, anterior cataracts, and eczema vaccinatum suggests that the atopic dermatitis is particularly severe, which may be related to chronicity.
The extent and severity of atopic dermatitis can be determined by careful examination of the patient’s skin, grading the extent of affected areas (e.g., percentage of involvement of the head, upper limbs, trunk, and lower limbs), and defining the severity of the following signs of eczema: induration, erythema, excoriation, lichenification, scaling, oozing, weeping, and crusting. In general, patients who have more than 20% skin involvement (or 10% of skin involvement if affected areas include the eyelids, hands, or intertriginous areas) that has not been responsive to first-line treatment should be considered for consultation with a specialist. Other patients who should be considered as having severe atopic dermatitis include:
* Patients with extensive skin involvement who are at risk for exfoliation
* Patients who require ongoing or frequent treatment with high-potency topical glucocorticoids or systemic glucocorticoids
* Patients who require hospitalization for severe eczema or skin infections related to the atopic dermatitis
* Patients with ocular or infectious complications
* Patients who have significant disruption of their quality of life (e.g., sleepless nights, school or work days lost)
* Patients who are generally erythrodermic
Patients not previously receiving appropriate treatment for atopic dermatitis should be started on first-line therapy, and attempts should be made to identify potential triggers.
Skin allergies are terrible, but, yet, there are obviously much worse things going on with this group of people.
abac68 – no, the web site does not mention Lymebusters. I was going by the email that Leitao sent to new members on April 30th. Read the actual post. Email me (email@example.com) and I can send you the original email.
The email you are referring to is NOT sent out by Mary Leitao. This standard letter is sent out by Ron Wells (Webmaster) – he receives all new registrations. You would have received this Michael when you registered with the Morgellons Research Foundation.
Regardless of who actually clicked on “send”, the letter is signed by Leitao, and hence represents the MRF. Read the top post – is that not her name at the bottom? Or are you saying Wells is forging letters from her?
Excuse me for interrupting, but I think this topic is where I’m wanting to comment, not meaning to break the flow of things.
“Some characteristics may not apply to any, but because you refer to them in a manner similar to that used in bigotry, you are generalizing. People of___________ skin color do this. People of ___________religion do this. ___________s act like this. Get it?”
The point needing to be “got” by someone, somewhere, is……
* ONE child not being afforded medical attention for his/her health conditions, due to parental neglect, is one child too many
* ONE pet not being afforded medical attention for his/her health conditions, due to owner neglect, is one pet too many
** Pets are neglected to the point of death.
** Will children be neglected to that point next?
* ONE suicide is one too many
* ONE poisoning is one too many
* ONE’s maiming of oneself is one too many
Some even drink bleach, bathe in it, and use it to rinse their hair
Even after “Mother Mary” has come out with her gentle request, things continue.
These people, their innocent offspring and pets, are in DIRE need of assistance.
Smilykins – To assist you with your allergy problems I suggest you give NAET Oriental Medicine a try. It really does work, but unfortunately doesn’t get rid of Morgellons.
Dr Nambudripad Allergy Elimination Techniques http://www.naet.com/
“Regardless of who actually clicked on “send”, the letter is signed by Leitao, and hence represents the MRF. Read the top post – is that not her name at the bottom? Or are you saying Wells is forging letters from her? ”
You are quite right Michael. That error has now been rectified. Thank you.
Thank you again, abac68. Although, I don’t need any help for skin allergies, I checked out the link you offered, and it is an interesting website.
I have a couple of very painful conditions, and I saw that they advertise a book there on do-it-yourself acupressure.
I have had to rely on that method as one of my self-help-only ways of trying to cope. I used to take acupuncture treatments of 28 needles, but it was only temporary relief, and too exhausting to keep up with.
“Why does the MRF recommend Lymebusters?”
It’s my opinion that Mary Leitao is trying to spread the awareness of her so-called disease. What she may not understand, however, is that the awareness “is” the disease, and the Lymebusters exposure is spreading it.
In case anyone forgets where they came from, Lymebusters has provided a link back to the Morgellons Research Foundation. The people at lymebusters also speak highly of Mary, and her cult makes a good reservoir of test subjects.
They really like her. But, afterall, she gave them something to blame for their underlying mental disorders, and something to set them apart, and make them feel special. And the sicker they get, the more faithful they will be to her.
Well, if they want to keep the “disease”, no one can really stop them. Hopefully some would be members will come here first, and come to the realization that her disease is primarily mental, and decide that they want no part of it.
I am one who has been posting on Lymebusters, I was searching on Google and stumbled upon your site. I read alot of your posts and believe by in large you have made a very good case. I have done lots of anti-biotics for lyme disease and am now embarking on a totally, natural herbal, diet, excercise plan to rebuild my system. Either way, no matter what is wrong with us that should be the cure, it will probably take me a year or two but I’m committed to it long term.
I honestly want to thank you guys, I’ve been pretty scared but reading your posts really helped calm me down. I could say more but then you might know who I am. There are people who are seriously ill, I have talk to many of them. I have book marked this page and will read more tomorrow. To be honest, I was very surprised that you guys really seem to care about us, almost begging us to open the door to another possibility. This is more than in my mind but the fear and trepidation of “it” has been terrible. I will say more in a later post.
Hi Undercover, I’m glad you like the site. One of the goals of this site it to provide information to people who are on the verge of deciding they have “Morgellons”, so they can make a decision best suited to their health needs. I’m happy if I’ve helped you a bit with that.
To read the site, you can start at the main page where there are various links and lists on the right hand column.
“Well, I have the creepy crawlies but no lesions or fibers, I’ve looked, tried everything to coax things out of my skin, nothing? I generally feel in good health too. But I did have scabies and mites (very small, light brown, I caught three of them on me, when I removed them the crawling went way down) on me at one point, haven’t had them again (or are they what I’m feeling on me now?). But have definite skin crawling and biting issues, it’s been a while now but some of the bites made me jump out of my seat. Anyway, no lesions, fibers, or fatigue, or even a feeling of real sickness at all. What do you think?”
“So are you still getting tons of them from your skin? I found a few worm like things on me today, most were dead, one alive? I can search my whole arm and find like two or three, I’ve been trying all kinds of things like vicks sab, menthold rubs, dexoprin, and stuff, something killed them for sure, perhaps it’s the Graviola I’m taking”
In 23 hours.
There seems to be a lot of claims of very strange sounding symptoms by a lot of people who now think they have something called Morgellons. Some seem to be so outlandish that they could not possibly be true.
Those who fear the unknown are often compelled to refute what they conceive to be a threat. Their own paranoia forces them to “take action” in order to prove themselves correct in their “assumption” of the facts.
It is clearly obvious that the creators of this site are the ones who are paranoid.
What makes you think that you have all the answers?
Who are you the ridicule anyone?
What is your agenda?
What business is it of yours who these people are and what they believe about their conditions?
It is not your business and it is not your place to criticize anyone.
The only ones who will like this site are the ones who are also paranoid about the possility that there just may be a strange “bug” that here-to-fore has gone unrecognized.
You are the same ones who just could not believe that AIDS was real. It was “strange” and it just could not be true!
New micro-organisms are being discovered at an alarming rate as technological advances increase. So, how can you set yourself up as so smart that you can make these claims about a serious set of symptoms that many seem to be experiencing.
I have had intense itching, stinging sensations and skin leisons for 14 years. I have been to many doctors but none have been able to give me a diagnosis. I am not delusional, crazy, nor do I “pick my skin.” I do not believe that I have “bugs.” As a matter of fact, I have had a biopsy of one of the leisons and there were no “bugs.” However, the doctor could not give me a diagnosis and quickly referred me to another doctor. What DID the lab see that caused him to not want to treat me??????
Four other members of my family have the same symptoms. Is it a thing called Morgellons? I do not know and I neither do any of you. Like fibromyalgia, morgellons is just a name given to a set of symptoms. No one understands this set of symptoms; certainly not any of you.
I can tell you that what ever this is…it is agonizing, the pain is unbearable and the fatigue can be disabling.
It would be poetic justice if all of you who doubt the reality of this set of symptoms were to develop them today. However, I do pray that you never have to suffer the way I and others do on a daily basis.
Why are you so AFRAID of this thing??? So, afraid that you are compelled to ridicule others?
Walk a mile in my shoes and you will change your mind.
The CDC has organized a task force on Morgellons. My letter to them and their answer can be found at:
Stopthemaddness…I read your blog…you are right about the suffering….you are right about the outlandish claims….your are wrong about the CDC:
CDC email address:
SO, If the CDC is taking theis seriously…WElllll……..
LadyJ, I agree you clearly have some thing that is causing the itching symptoms, and you deserve appropriate treatment. I simply disagree that “Morgellons” is the catch-all for people with similar symptoms.
If some people have a different disease, don’t you think it would be best for them to find this out, rather than having an overly broad definition of “Morgellons”?
#”The only ones who will like this site are the ones who are also paranoid about the possility that there just may be a strange “bug” that here-to-fore has gone unrecognized.”
*Not quite, but it isn’t intended for die-hard morgies.
#”You are the same ones who just could not believe that AIDS was real. It was “strange” and it just could not be true!”
*Not even close to knowing the reality of other’s thoughts
#”New micro-organisms are being discovered at an alarming rate as technological advances increase. So, how can you set yourself up as so smart that you can make these claims about a serious set of symptoms that many seem to be experiencing.”
*Immaterial & irrelevant to this matter
#”What DID the lab see that caused him to not want to treat me??????”
*Let’s try to be reasonable and rational. Is that not something you need to wonder about yourself, as to “why” you didn’t address that with your doctor? You may still gather your lab report and see what it says, and then take it in to dicuss, if you do not understand it.
#”Four other members of my family have the same symptoms. Is it a thing called Morgellons? I do not know and I neither do any of you.”
*Oh, no, I guarantee you that I do know that nobody has “morgellons”, but I haven’t a clue as to what you and your family do have.
Here’s that same morgie-mantra, that’s so familiar:
#It would be poetic justice if all of you who doubt the reality of this set of symptoms were to develop them today. However, I do pray that you never have to suffer the way I and others do on a daily basis.
Why are you so AFRAID of this thing??? So, afraid that you are compelled to ridicule others?
Walk a mile in my shoes and you will change your mind.
*Excuse me, because I’m personally not angered at any sick people. What is standing in sick people’s way, preventing them from finding what they need to get on with it already, is where my frustration lies.
I might have been in your shoes before, or relatively close to it. I don’t take a stand on topics I am not sure of. I don’t shame people with mantras, either.
You’re funny.. ridiculously funny. We’re not afraid of Morgellons. Morgellons is just a word. You may have a disease, but you certainly DO NOT have Morgellons. You need to read Mary Leitao’s own words about the founding of the Morgellons Research Foundation. She had a diagnosis from Drews doctor, but she chose not to believe it. It’s obvious that she misunderstood his symptoms and was also driven by her bruised ego. Look how the list of symptoms have expanded over time, obviously to accommodate as many followers as she could muster.
It is our business to enlighten these poor mentally ill people. They are being exploited by the MRF and Lymebusters. They’re also being exploited by other message forums and snake-oil dealers. How dare you compare Mary Leitao’s made up disease with a real tragedy like AIDS. You say that you are not delusional, crazy, or pick your skin. You are delusional. It’s obvious. You can really itch, and still be delusional. Are you crazy? I don’t know, but you sound like it. You probably scratch in your sleep too, if you really itch. No, we’re not afraid.
Stopthemaddness: Right on, with your blog.
Lady J: Your blog is very lacking in detail, and the woman’s death that you cite has nothing to do with anything in your situation, nor anyone else’s who has all this absurd confusion over what is the matter with them.
I appreciate all of your responses.
Michael…….you are right, I do have “something” but I have yet to find a doctor who can tell me what it is. I am open to any conclusion that brings a cure for me. However, for 14 years and many doctors none has given me any diagnosis or anything to cure what ever this is.
smilykins…your comments are cruel and hurtful. You have no idea what I have been through for 14 years. You do not know that I have seen 12 doctors, from GP to dermatologist to neuologist and not one offered a diagnosis. I am open to any diagnosis that proves to be the answer. I do believe that these symptoms may be caused by untreated Lyme disease but it is a shame that I had seen so many doctors and I have come to that conclusion through my own research. Also, the blog I posted was just to show stopthemadness that the CDC has indeed established a task force to study morgellons. It ended up on a blog after I read her blog. I have never read nor had a blog before and just thought I would learn something new about this cyber-space world. Also, the women who died…you do not know what caused her seisures or her death.
tallcotton….I assure you that I am not crazy or delusional. I to have read posts on these message boards and I agree that some of these people do have a mental problem. There are some really outlandish claims added to this set of symptoms. I stated that I have a “set of symptoms” and that I do not know what it is. Yes…I scratch..have you ever had something itch so bad that you HAVE to scratch. Ever had an ant sting you? Did you scratch? My comparison to AIDS was not comparing the diseases but rather peoples reaction to it when it was first recognized. How about bird flu…had it been heard of 10 years ago? Yet we are boombarded by the media about the possibility of a pandemic of bird flu.
New diseases and revival of old ones takes place daily. I am thankful that someone is looking into this set of symptoms. Maybe they will get to the bottom of this…maybe not, but at least they have the attention of the CDC. Maybe the CDC can sort it out. If it is something called morgellons…so be it…if not then maybe their investegation will find out what it is and come up with a treatment. I do not care WHAT they call it..I just pray that someone somewhere will find a way to help relieve the suffering.
“You probably scratch in your sleep too, if you really itch.”
Yes, I do, most likely, scratch in my sleep as I often wake up with blood on my gown and sheets.
Unfortunately many cases of itching are never explained. Some people itch for years, and have the itching simply go away. While it is quite possible that you have some undiscovered disease, that’s really not a good bet for you. Sure, you should remain open to that possibility, but recognize that even thought your doctors have not been able to find the cause, it’s still 99.9% that you don’t have an exotic new infectious disease.
The best article I’ve read on itching is:
Which has this to say about scratching:
“Itching may be relieved for up to 15 to 25 minutes after scratching. However, scratching may subsequently enhance the sensation of itching, thereby creating a characteristic “itch-scratch-itch ” cycle.”
“Scratching may cause excoriations, which can lead to folliculitis, erysipelas, abscesses, or erythroderma “
“Any pruritic disorder can lead to lichen simplex chronicus (neurodermatitis circumscripta), which is characterized by well-circumscribed, erythematous, hyperpigmented plaques with accentuated skin margins. Frequent picking at a skin site can lead to prurigo nodularis, which is characterized by papules and nodules that are often associated with pigmentary change, scale, erosions, and crusts”
It also has this, rather unhelpful, statement about unexplained long term itching:
“Inform patients whose persistent generalized pruritus [itching] remains unexplained after a thorough assessment that pruritus typically disappears over time (sometimes years) and that most patients generally do well.
However, little published information is available on long-term outcomes of patients with pruritus of unknown cause.”
I highly recommend you take a few days to read the full Merk article. There are a LOT of causes of itching, and some are very obscure, and some cannot be determined. It also contains a lot of useful information. For example:
“Take short baths and showers only when needed.”
This is contrary to the advice you find on places like Lymebusters, where people frequently advise soaking for long periods of time.
In short, your best bet is to work with your doctor to manage your symptoms, while looking for a cause. But accept that it’s quite possible that a cause may not be found, and you need to accept that.
If you are scratching until you bleed, then you are stuck in an itch-scratch-itch cycle, and you need to bring this up with your doctor, and ask him about ways of breaking the cycle.
Michael..Thank you for the info. The scratching to bleeding happens in my sleep. I have started keeping bandaids on the sores so that I can be sure that I am not fraying them with my nails. I appreciate you having the courtesy to write to me intelligently and for not being patronizing or ridiculing, (like some others have done.)
The one thing that stands out in my mind as I have tried to make some sense of all of this…..is…..Dr. Wymore, his assistant, and others associated with MRF have been very kind, understanding and helpful to me even though I have never given them one red cent and they have never asked me to do so.
On the other hand, those who so adamantly want to shove their own opinions down the throats of those who do not agree with their point of view, (like certain ones on this site) are uncaring, nasty, mean, hurtful, ridiculing and cruel. So…..this site has helped me to make a decision that I here-to-fore was not sure about….that is this…….I am a very rich Lady and the stark contrast of this site has convinced me that I MUSTcontribute as much as possible to MRF.
So..For that I thank all of the buffoons who have been so ugly to me.
Don’t waste your time answering this because I will not be back to read it. Cheers
“smilykins…your comments are cruel and hurtful.”
Gee, Lady J. I’m sorry. You threw the first stone, with your direct accusations in comment #88, to any opposers of “morgellons disease”, in stating what YOU think we all think. I form my opinions on the facts I see.
“You have no idea what I have been through for 14 years. You do not know that I have seen 12 doctors, from GP to dermatologist to neuologist and not one offered a diagnosis.”
Didn’t I say your blog was very lacking? It looks fine, but what message could I get about your personal experience? I just now checked back, all this time later, and readers still see nothing pertaining to that. Be reasonable. I didn’t say that I knew anything about what you’ve gone through, because I don’t, lady.
“I am open to any diagnosis that proves to be the answer. I do believe that these symptoms may be caused by untreated Lyme disease but it is a shame that I had seen so many doctors and I have come to that conclusion through my own research.”
I’m sorry you’ve been through whatever you have for 14 years and 12 doctors. Golly, I wish when I went to a doctor, they didn’t keep finding health problems. There’s a damn time we all have to learn how to deal. If they can’t find anything wrong with you, you’re either not communicating correctly, you’re seeing the wrong type of doctor, or there isn’t anything the matter with you, other than…
oh, see, you never actually said on your blog.
“Also, the women who died…you do not know what caused her seisures or her death.”
Of course I don’t. I’m not so dumb as to not see that you don’t either, and what your motivation for bringing that woman’s death up is.
Have you had a liver panel done? Do you take any meds that cause itching as a side effect? Have you researched your symptoms, with sound reasoning involved, before jumping to conclusions?
“Walk a mile in my shoes and you will change your mind.”, you said.
No. You’re a real hum-dinger-of-a-doozey. My walk through life is enough. I’m happy you felt you needed to tell us you’re a rich lady, donating to MRF. Wow, I really like rich people. You should have told us your income level as soon as you posted, so we would all behave and give you proper respect. I know there is one morgie female who claims to live in a million dollar mansion. She could get things rolling, huh.
WHERE IS THE EARLIER POST FROKM NIELS AND JOY? TOO MANY QUESTIONS YOU CAN’T ANSWER….DOCS THAT ARE NOW CONVINCED THIS IS REAL ARE STILL COMING YOUR WAY…BIG MEDIA….AND DOCS WITH QUALIFICATIONS THAT WOULD PUT YOUR TO SHAME…IF YOU EVENB HAVE ANY….WHAT A WEBSITE…DELETE THE ANYTHING YOU CANNOT ANSWER OR THAT SCARES YOU! DELETE ALL YOU WANT…28 SENETARS CONGRESSMAN OUR ON OUR SIDE… LETS SEE IF THIS ONE DOES NOT GET DELEATED…DOES MAYYER WE COPIED BEFORE YOU DELEATED TO PROOVE YOU DELETE…YOU OUT TO WORK FOR THE BUSH ADMINISTARTION… TCHALLE3..EVEN ,,,MAJOR MEDIA AND QUALIFIED PHYSICIANS SND
where are the posts from niels and joy from a few hours ago?
does not matter mainsteam media and Michael Moore with be coming your way!
plus all comments you deleated that had no profanity just questions and facts have been copied and will be turned over to the very people who will bring you down! so delete on!
then you can debate withy your face live on tv…just wait!
Joy, my gosh, try to focus and calm down. Here are your and Niels’ comments!
Joy, the comments you think were deleted are numbers 18 and 19. Your behavior is the only thing that’s resembling anything that’s scary. Try and regroup. Take a relaxing soak in the tub, or something, to be kind to yourself.
Joy, are you also Liz, aka, Lizard? I hope that you’re going to be all right.
had to change my screen name because of people like use who use my medical records for your propaganda! and one out of 10 unconvinced family members who is now also showing symptoms.. I don’t hang out in here I am very sick…my husband is sick and my nephew 1000 miles away is sick!…tell me do toddlers and elderly people with no mental health history ususally suffer from delusions? derms docs with one visit and no tests done authorized to diagnose someone delusional and hand out zyprexa….attorneys are our also coming on board..you should close this website down before you ruin your careers! still can’t figure why you are so devoted to this…I think you will be very sorry in the end that you did eveything possible to derail a fast spreading infectous disease….and if you hate lymebusters so much why are you always in their poking around! bye bye…I pray your babies don’t get this illness and you don’t have to watch…how will you feel then? since you want to expose my real name your real names and where you can be located are also out there..not a threat just for maybe media and for for Michael Moore…he may want to interview you and get your take on things! you are willing to go on camera right because I am and I will let them film as I pull these things out of my skin and I would like you to be there! where is the post I did earlier…does not matter I copied it! And if you knew me you would know I don’t get angry easy and try to do everything to help and support people who are suffering! so I can sleep at night….will you be able to?
Scroll up. Comments #107 & #108. Nothing has been deleted. It’s wrong to say things have been, when they haven’t.
My behavoir? are you kidding….you have been so cruel and hurtful to some many people and children suffering….you think someone has bad behavoir if they pose any questions to you that you cannot answer!..most people that know me say I am kind and giving and the only ones that said I need and Exorcism was one of you guys.copied that too!!!you are messing with a women that worked at one of the top Bay Area Law firms and left with alot of merit… do you ever wonder why you seem to bring the worst out in people? maybe you are not watching people you love die! as well as yourself! I really think you need help! copying this too so leave it where it or and don’t bury or delete..close this website and dedicate your time to breast cancer research or ms or something you do believe and quit hurting people!
Joy (Liz), under the Brandi Koch topic thread, you’d asked some questions, last month, but I really could not understand you. You are not making sense with anything you’re carrying on about.
Click the below link, and see my comment #147. Your comments began at #256. See my comments #263 & #265
I don’t think anyone on earth can meet all of your demands, and when you say the things you’re saying, ah, fuck it, you are screwed up, and you know it.
I’m sorry, but Liz, I tried directing you (which seems so simple a thing, to me), into understanding that Niels’ and your comments weren’t deleted. Nobody here can do anything about those other unusual thoughts you’ve expressed.
THOSE OF YOU WHO THINK THIS SKIN DISEASE IS NON EXISTANT ,PLEASE DO ME A FAVOR AND THEN YOU CAN WALK IN OUR SHOES ,FIRST GO OUT AND FIND AN OCCUPIED BIRDNEST TAKE IT INTO YOUR BEDROOM ,PLACE IT UNDER A HEAT LAMP EVERY DAY ,UNTIL THE CRAWLING STARTS AND THEN EMAIL ME AND WE’LL SHARE STORIES AND SYMPTOMS .HATE TO BE SO FORWARD BUT YOU JUST DONT UNDERSTAND .IF YOU DONT UNDERSTAND SOMETHING YOU NEED TO FIND ANOTHER HOBBIE UNTIL YOU WANT TO JOIN THE SUFFERING .ONE OF THESE DAYS ALL THIS WILL BE IN THE PAST UNLESS WE KEEP SPREADING THE DARN THINGS AROUND AND I MADE THE DECICION I WAS NOT GOING TO STAY COOPED UP AND NEVER VENTURE OUTDOORS ,THAT JUST IS NOT ME..IF YOU DO NOT BELIEVE WHAT THESE PEOPLE ARE SUFFERING WITH ,WHY CANT YOU JUST MIND TO YOUR OWN OPPINIONS AND LEAVE EVERYONE ALONE ,GO CAMPING UNDER A TREE ALL WEEKEND OR SOMETHING . WHEN IT COMES OUT THAT THESE THINGS ARE PARASITES AND WE EVER DO GET SOME HELP THEN ID BE ASHAMED TO GET ON HERE AND DOUBT SOMEONE AGAIN .SOME OF YOU JUST SHOWIN YOU ABSOLUTELY ARE BORED AND HAVE NO LIFE AND IF YOU DONT HAVE MORGELLONS ,BELIEVE ME THIS WOULD BE THE LAST THING ID BE WANTING TO DO EACH AND EVERY DAY ,ITS LOSERS VILLE…….
IVE ALSO TOOK NOTES AND COPIES OF MOST ALL THATS BEEN PLACED TO HURT ALL THE SUFFERERS ,ITS WRONG AND YOU KNOW IT .KEEP GETTING YOUR KICKS OUT OF ALL THIS .
Sandra, when things are made public, they’re scrutinized. Have you no compassion for the public being alarmed with word that there’s a new disease? I’m sorry you have expected that people should merely accept that without taking everything into account.
As far as the bird mites, I’ve stated to you before, on here, that I’ve had my share of baby birds and bird nests and getting bird mites all over my arms and hands. They wash right off.
Do you know that when someone is diagnosed with a disorder of delusions that they will remain in that state until it’s treated? When reality is distorted, it’s a dangerous state to be in. I wasn’t diagnosed when I had delusions for a couple of months six years ago, but I knew I was seeing things all wrong at the time. Yet, it was my reality, and had me in its grip. DOP is a hellish frame of mind to be in, worse on some people than others. Apparently, bird mites had a role in triggering your state. Heat exhaustion and dehydration triggered mine back then, and passing kidney stones made me much worse.
I didn’t become a hateful person, suspicious, or drive people away when I was sick. The lives that “morgellons disease patients” share are so hauntingly similar to one another, beginning with the first doctor they walk away from.
Have many people disagreed with your take on what you’ve got going on?