On the Morgellons research foundation, there is a flashing link that says “Click here for a letter to your doctor!”, which takes you to this page:
http://www.morgellons.org/letter.pdf
This is a two page letter, with the Oklahoma State University CHS letterhead, dated May 15, 2006, from Randy S. Wymore, Ph.D. and Rhonda Casey, D.O., beginning “Dear Practicioner,”
The letter makes some interesting claims, and contains a few leaps in reasoning, and unspoken assumptions. I’ll go over the whole letter and comment on it a bit at a time.
This letter concerns a patient population that manifests a particular set of symptoms we have encountered with increasing frequency, and that OSU-CHS is actively researching. The condition has been labeled as Morgellons Disease and it is unclear if this is a single disease or a multi-faceted syndrome.
What is unclear is if there actually is a patient population manifesting a particular set of symptoms. As has been pointed out several times, including by the Los Angeles Department of health, the “particular set of symptoms” is vague and covers a large number of conditions. The only consistent distinguishing feature, the fibers, has been shown to be simple environment contamination, since fibers are everywhere and it is impossible to keep them out of lesions.
Until recently, most of these patients have been grouped as a subset of the diagnosis of Delusions of Parasites (delusional parasitosis; DOP).
Delusions of Parasites is the mistaken belief that one is infested with parasites. If people simply have lesions, and find fibers in them, they may form the mistaken belief that their fibers are connected with their disease. DOP is a poor diagnosis in this case, and I have often spoken against this.
The Morgellons research foundation seek to characterise their campaign as a fight between two choices, either Morgellons is a new disease, or it is DOP. This serves to increase sympathy for sufferer, as clearly their symptoms (particularly the lesions) are real, and they do in fact find fibers in their lesions. But the reality is more complex. Many of the sufferers clearly have some form of dermatitis artefacta, or neurotic ecoriations, and the causes of those symptoms are many and varied, and DOP plays only a small part in them.
After obtaining careful patient histories and thorough physical exam, we have determined that Morgellons patients have several important distinctions ruling out the diagnosis of DOP.
Like I said, DOP plays only a small part here. So ruling it out only rules out a small part of the possible causes of the symptoms. There are a LOT of other things that need to be ruled out before we can decide someone has a disease new to science.
This population of patients frequently exhibit the following symptoms:
• Distinct and poorly healing skin lesions with unusually thick, membranous scarring upon eventual healing.
A classic sign of Neurotic Excoriations. Dr Noah Sheinfeld, MD, JD, FAAD, says of Neurotic Excoriations: “The erosions and scars of NEs often have irregular borders and are usually similar in size and shape”, “The erosions can heal slowly because of recurrent picking”, “Scars often remain on patients with this condition”, “Patients pick at areas until they can pull material from the skin. This may be referred to as ‘pulling a thread from the skin.’”
• Moderate to extreme pruritis at sites of lesions as well as un-erupted skin.
Pruritis (itching) has many causes. That lesions should itch is not at all surprising. Itching can cause lesions via what is known as the itch-scratch-itch cycle, whereby the patient obtains temporary relief via scratching, but irritates and damages the skin in the process, causing the itching to return later. Eventually the damage to the skin causes lesions to form. The Merk manual says “chronic rubbing or picking at itchy skin results in an “itch-scratch-itch ” cycle that can eventually progress to discolored thickened patches of skin (lichen simplex chronicus) and/or lumps and swellings (prurigo nodularis) that are difficult to treat” – note that “lichen simplex chronicus” sounds similar to the “unusually thick, membranous scarring” that is mentioned above.
• Microscopic examination of these lesions will most often reveal the presence of unusual fibers, which may be black, blue or red. These fibers, which many healthcare providers initially thought to be textile contaminants, are often present in the deep tissue of biopsies obtained from unbroken skin of individuals with this condition. Careful examination of these fibers further reveals that they are frequently associated with hair follicles, and are definitely not textile in origin.
I’ve covered fibers before, demonstrating that fibers are everwhere, and that I personally have fibers on my skin, and in my lesions. I’ve not performed a deep tissue biopsy yet, but I wonder how many Wymore and Casey have performed, and if they did, were the results anything like this:
That’s a deep skin biopsy clearly showing some fibers. They are nerve fibers.
But what of “not textile in origin”? It is unclear how this has been determined, how many fibers have been examined, and what the source of those fibers was. Wymore has simply failed to identify some fibers out of the hundreds he has looked at. He is not an expert on fiber analysis, and even the experts can not identify every fiber they look at. Not being able to identify a fiber tells you nothing.
“Black, red and blue“? Along with clear and white fibers, which are hard to see on skin, those colors are by far the most common in environmental fibers, accounting for seemingly over 95% of all random fibers I have observed.
• Most of these patients suffer from a host of neurological symptoms which can vary in severity from mild to severe. These neurological symptoms include peripheral tingling, paresthesias and varying degrees of motor involvement which appear to progress.
That describes just about everyone over the age of 40. If you were to ask any patient of middle age or above: “have you ever felt any numbness, or tingling”, you’d probably get an affirmative answer. The cause could be anything from very common conditions such as Carpel Tunnel Syndrome, arthritis, diabetes, hypothyroidism or atherosclerosis, to less common, but not unusual, conditions such as a brain tumor, motor neurone disease, or autoimmune disorders like multiple sclerosis or lupus erythematosus.
• Intermittent cognitive and behavioral status changes are often observed and also seem to progress with the severity of disease. This is often referred to as “brain fog” by the patient as they experience a waxing and waning of this symptom.
“Brain fog” is common symptom of Chronic Fatigue Syndrome, a MUPS that many Morgellons believers are diagnosed with. “Intermittent cognitive and behavioral status changes” can have many causes, including normal aging.
• Laboratory findings in these patients are variable, but often reveal eosinophilia and elevated levels of Immunoglobin E.
“Eosinophilia” is a blood test result indicating an increase in the amount of eosinophils in the blood. A “wide spectrum of illness” is associated with this. The most common cause in the US is “allergic conditions, including drug reactions and atopic asthma”. Worldwide it can be an indication of parasitic infection, which explains its popularity with some Morgellons believers, who often claim their doctors are too quick to discount exotic illnesses such as parasitic worms.
“Immunoglobulin E” (IgE) is a type of antibody. Some people have elevated levels of IgE, which seems to be related to a higher incidence of allergies, eczema and asthma. One can see some correlation here with conditions that have symptoms that might lead people to believe they have Morgellons.
There is another simple explanation for elevated IgE levels, Dr. Adrezej Szczeklik notes “Tissue injury characteristically results in a marked, transient rise in IgE levels in the blood“. While this is more typically associated with major trauma, it’s quite conceivable that the the same mechanisms come into play when the body is dealing with the persistent healing situation presented by the continually generated lesions, and likely sepsis, of neurotic excoriations.
• Other symptoms of varying severity and frequency have been described, and are included in the attached case definition.
As I’ve discussed before, the case definition is all-encompassing. I fit well within the case definition, yet I don’t have Morgellons.
Morgellons patients differ from classical, delusional parasitosis patients in several areas. They do not respond to antipsychotics,
If they simply had eczema with itching (a perfectly normal condition), and found some fibers on their skin, then antipychotics would not help. Again though, this is not DOP vs. Morgellons. A vast number of conditions could cause these symptoms, many of which would not respond to antipsychotics. Also, this is based on what evidence? Clinical studies, or anecdotes?
and new lesions continue to appear upon complete cessation of manual excoriation.
Again, what is the evidence? I suspect this is based on anecdotal self-reporting by the patients. Actual dermatologists suggest otherwise: “He typically puts a cast over the lesions to prevent further irritation and after four weeks removes it. ‘Guess what?’ he says. ‘The lesions are healed.’”
Due to the sensation of foreign material in their tissue, that has been described as sharp, stinging and/or splinterlike, the patient may have discovered the fibers prior to seeking medical care, and may bring them to your office for examination. Please do not assume that the patient’s problem is purely psychological based on this propensity.
What is being referred to here is the “matchbox sign“. The patient itches, the patient thinks this feels like a splinter, they look at their skin, they see fibers, they assume they are related to the itching, they take them to the doctors. Doctors will not assume these patients are delusional – they will explain that the fibers are lint, they might examine them to verify this. They will only begin to consider a delusional disorder if the patient continues to insist that the fibers are somehow unusual, in the face of contrary evidence. Further diagnosis of DOP may come if the patient insists that the fibers are some kind of organism, based on no evidence.
The “Matchbox sign” alone is not an indication of a psychological disorder. Nancy Hinkle lists twenty common attributes of DOP sufferers, of which the matchbox sign is just one. However, since it IS a symptom of DOP, the physician must take this possibility into account.
Many of these patients may appear skeptical of traditional medical care due to frequent dismissal of their symptoms in the past. The combination of suffering from a chronic disease with distressful symptoms and no known cause or cure can cause some patients to appear anxious or agitated. We encourage you to take the time to carefully interview any patient who may fall into this category, perform any testing you may deem appropriate, and most importantly treat the patient with compassion and dignity.
This last part I fully agree with. These are real people with real problems, they deserve our sympathy, our compassion, and the best medical efforts to help them recover from whatever is causing their symptoms.
Michael –
I only have one problem with your post simply playing devil’s advocate, that’s OK with me, healthy skepticism is warranted and SHOULD be applied to every single case. The fibers have not been identified as ANY organic or environmental contaminant. Sure, you can wad up some carpet fibers and match them to the pics, but you cannot do the DNA work that HAS been done to proove this point. That science HAS been done. And the truth is being spoken in that open letter. Have you listened to the MP3 Dr. Wymore speaks….he started as a skeptic. He believed the environmental fiber theory, until assays proved otherwise. There will be supporting evidence provided when tests are replicated. THAT’S science. Replicatiion of results. I believe this was addressed in the Rense interview also. Read, listen and wait before you jump to too many conclusions. It wouldn’t be announced if the science wasn’t there to back it up. I’m just asking you for 2 things: Keep an open mind and be patient. Hopefully never a “patient”, I wouldn’t wish that on my worst enemy, but patience for the testing to be completed. This WILL take time. Science isn’t performed overnight. If it is……..it’s bad science or not what I would consider science at all!
Be well to all !
I’m not playing devil’s advocate. That would imply I’m arguing for a position I don’t feel is actually justified by the facts. I’m simply arguing based on facts. I’ve yet to see any evidence against my arguments.
You know that any lesion will have environment clothing and dust fibers in it. Yet you say that you can tell the difference with DNA tests?
How does the casual reader of the MRF web site distinguish their fibers from environmental fibers?
Does Ginger Savely perform DNA tests on the fibers of the people she treats with long term antibiotics?
DNA test alone don’t tell you much about a fiber (except being able to exclude specific organic fibers). But it seems you are saying that only Dr Wymore is able to distinguish between regular fibers (which everyone has in their lesions), and Morgellons fibers.
If the overwhelming majority of regular people cannot distinguish between regular fibers and Morgellons fibers, then what criteria can you have for saying anyone has Morgellons?
Morgellons,
RE: new vs. emerging
You said: “It’s new to science. Nobody has ever described a disease with fibers like this before. It’s new.”
I see your point, but I wouldn’t say it’s that clear-cut. I think if you described it as “new and and emerging”, the words are compatible. It can’t yet be called “new” in (many) scientific terms. I couldn’t say if it’s “new” or not, that depends on what the meaning of is is, and I think more facts are needed.
Which definition of “new” are we using?; new to this planet (a completely new organism), new to this continent, new to this country, new vertebrates, new to mamals, new to humans, a new decription (manifestation) of disease of previosly described in other terms, a new combination of organisms or diseases? I’ll wait for that to be determined by smarter people than me, and just hope it’s happens soon.
Also, Re: the M.R.F. geographical maps: The maps are not detailed (seems to be just demonstation to me), they don’t contain much data and you shouldn’t use them to solely discredit and dismiss the data on which they are based (it’s only geographical data available). How about if you ask M.R.F. for more data and details, maybe give a small donation for their trouble.
The clusters are identified by city, of course the population density will factor in, the media also, the big clusters will be in the bigger cities – thats common sense. However, the clusters (identifeid by city) do not fit nicely with the population numbers of the biggest cities: For example, New York City has twice the population of LA, the cluster should be twice as big in New York, Chicago should be bigger than Houston, etc.
As I recall, M.R.F. was collecting data on clusters prior to the local media reports. I don’t now the facts, please check the facts before you call it B.S.
Anyway, I’m glad to hear that you don’t think that all of us are nuts or hypochondriacs. Got to go, my time is committed, I’ll get back to you in a few weeks. I’ll send photos soon (as soon as time permits).
Igi Ydgi
Since there has not been a disease described that creates polyester-like fibers, it’s new to science.
You can’t really get much info from the infographics on the MRF site, other than they are trying to suggest something. I take it you saw the “Border Disease” post:
http://morgellonswatch.wordpress.com/2006/05/20/border-disease/
I’ll ask the MRF for some more detailed figures.
“Remarkably, not all people with this disease have overt skin lesions, as some individuals report intact skin. The troubling sensations and accompanying physical structures, are the consistent clues to this infectious process.”
http://www.morgellons.org/symptoms.html
How is it, again, that I am getting these fibers in my flesh Michael? I don’t have lesions; my kids don’t have lesions. Your pictures were cute, but they don’t look anything like the tablespoons of blue fuzz I was able to scratch from my freshly washed and shaved legs while my mother watched in disbelief.
“I’m simply arguing based on facts. I’ve yet to see any evidence against my arguments.”
Ya know, never in my life did anyone tell me “learn how to save samples and take video footage of crap exiting your body so that the medical community and blogging naysayers will believe you when you need them to.” I’ve saved stuff at times; then I wonder who or what I’m saving it for. It’s a very strange position to be in when one has to demonstrate their illness on demand in order to appear credible. Actually, many who may have been prepared to demonstrate fibers emerging from their bodies were laughed out of their doctors offices before the opportunity ever presented itself. For those whose doctors get the whole show, what happens next? Most doctors are too busy to bother with the amount of work involved in assisting someone with a unique, undocumented condition. Even with my own doctor now, I worry about becoming a research burdon to her. The CDC says they want the fibers to be sent in such-and-such manner through our physicians. My doctor is just as clueless as I am about how this is supposed to happen. You see, people (like you) are so quick to doubt that this is real that they create a wall of barriers to inhibit anyone from proving otherwise. Their motive is to be “right” at all costs.
ah
How equiped are you to analyze the fibers yourself? I suppose you could always ask Morgies to send you some of their fibers. What methods would you use to deterimine their origin or composition?
I should also mention that this need to be “right” is probably unconscious. They think they are being polite to a bunch of crazies. The crazies, us, have been so prejudged that we can’t really get anywhere in the system that labeled us.
Aherah, a video of fibers emerging from intact skin, with something constantly in the frame to show scale (a coin?) could be very impressive. Do you know of any such video evidence?
Recently I’ve seen something awful that Carrie posted. It was alleged that this person was a “sufferer.” They had a sort of worm thing proding around in their lesion. This did not look like what I have. I have fibers. Some fibers may look like worms, but I am not convinced that they are, indeed, worms. If I had a moment of clarity while I scratched the fibers out of my flesh, I might have hunted down the video camera, figured it out (spouses job), and took some video. I tend to think that there probably is amateur video out there, but even if there is it can be dismissed like an alien autopsy hoax. There has been lots of news coverage in which video was taken in previous years. I recall in one such video a dermatologist was plucking fibers from a womans arm. I’m sorry you don’t find the present video coverage on CNN convincing enough.
The scale? Dust-bunnies scale.
Sorry Louise, I just didn’t live my life as a continued effort to prove my illness. I know it’s there. I don’t need any convincing.
>>Sorry Louise, I just didn’t live my life as a continued effort to prove my illness. I know it’s there. I don’t need any convincing.
Yes, but if you expect others to be convinced, then some evidence is necessary.
“How about if you ask M.R.F. for more data and details, maybe give a small donation for their trouble.”
If they were real scientists, they would do it for free because they’d want to know…. right?
“Yes, but if you expect others to be convinced, then some evidence is necessary.”
The first time I brought “evidence” the doctor said it looked like sweater fibers and sent me packing. The second time I brought “evidence” the doctor literally kicked me out of his office. The third time I brought “evidence” (twelve years after the kicked-out incident) the doctor would only look at it from the corner of his eye as he sealed my go-nowhere fate in my medical file. I assure you, there were times when I panicked and may have appeared unreasonable, but I have never been delusional. The first two times the MRF didn’t exist, and didn’t use zappers or bleach or ammonia or enzymes on my body. What I brought would have been some pretty good evidence had any one of my doctors given it a real look. Like most people with this disease/syndrome, I have had plenty of other “evidence” at times, but I’m just not attracted by the prospect of going to my doctor with it and enduring another humiliating episode. I don’t collect “evidence” anymore; it’s pointless.
I promise the next time my body starts to swell, I’ll have a camera on stand-by.
“The second time I brought “evidence” the doctor literally kicked me out of his office. ”
Literally kicked you out of the office? And you did not press charges for battery?
Bubbles,
It was a workplace injury/illness clinic at the California Pacific Medical Center in SF. After I asked the doctor to look at the fibers (which I believed were asbestos from my workplace) he disappeared for about two minutes, then reemerged angry. I have no idea why he was angry. He yelled at me telling me to “get out of my office.” He opened the door indicating that I should leave. He may or may have not manhandled me on the way out. My recollection is that he did, but it was fourteen years ago. In any case, he acted very, very odd. I was a young, scared, college student. I did not pursue it, nor did I go to anymore doctors concerning it. The irony is Pacific Medical Center is one of the few places that recognizes Morgellons today. Apparently, I wasn’t the only one with fibers:
“Cindy is an RN who has worked in the ICU of California Pacific Medical Center in San Francisco, California for the past sixteen years.”
http://www.morgellons.org/nurses.html
I like your handle. My father used to call me bubbles as a chunky baby.
I did not find the CNN video convincing, because all they showed was one blue cotton fiber laying on bare skin. No fibers emerging from skin, and certainly no fibers in lesions. Since they spend two days with several star patients (including dblcreek), you would think they would have been able to show something vaguely convincing. What do we get? Microscopic pictures of what looks like cotton, and what is obviously human hair. And the classic photo of a lump of flesh picked from Andrew Leitao’s lip four years ago.
I would be very keen to see a multi-faceted study of Morgellons sufferers. One group would be control (no treatment) another would be placebo of antibiotics, one would be antibiotics, and one would have their lesions covered with a cast as suggested by Dr. Lynch. What is there to lose, except proving Morgellons is real or not?
Double blind clinical tests are great! I’m all for them.
What criteria would you have for someone to be considered a “Morgellons sufferer” for the purposes of this test? What would exclude them?
If the doubters need proof, I don’t think any Morgies are unwilling to oblige. Of course you make the assumption, again, that we all have lesions. Another good angle to look into might be what prompted other doubters, such as Dr. Wymore, to believe that the fibers are not textile. Maybe he has some “video” or maybe he has seen something you haven’t. I don’t think anyone else has examined the flesh of Morgies better than him and his staff–why not ask him why he is so convinced? What did he see? What has he observed? Is he delusional?
I’ve asked Wymore several times. He basically says that he has determined to his satisfaction that the fibers are not environmental.
But he never says what criteria he uses to make this determination. He never says what is special or unusual about these fibers, what they have in common with each other, or in what way they all differ from all other fibers.
I guess my point is that the people who are on board already have proof. They don’t see the need to provide additional proof to a bunch of bored bloggers espousing doubtful opinions from their clean, distant positions behind computers. If you’re really interested in knowing, you need to get your hands a little dirty.
Perhaps I’ll ask Wymore and his staff myself, and I’ll ask him/them to be a little more specific.
No. The MRF needs to provide evidence (not proof, just evidence), that there is something there. Otherwise they are just spreading fear, and making people sick.
Even if Morgellons is a real disease, how many people have found fibers in their lesions who do NOT have Morgellons? Practically every lesion has fibers in, regardless of the cause of the lesion.
The MRF needs to say what it is about the fibers, so the people who do not have Morgellens can tell if they just have normal fibers.
“Even if Morgellons is a real disease, how many people have found fibers in their lesions who do NOT have Morgellons?”
I can only say that if I had seen some fibers in my boo-boos (don’t have lesions), I generally think I must have rubbed it on the couch or on the carpet while it was still damp and then it dried with these textile fibers in it. Unfortuneatly, I can’t say that I scratch tablespoons of blue fuzz from my clean legs because they brushed the couch or the carpet, netiher of which are blue. But if a person is so dense that they don’t know that carpet and couch fibers get in to damp lesions, then the problem may be a matter of mere stupidity. Yes, fibers are everywhere. I don’t believe that the +/-4,500 people who find fibers emerging from their flesh are this stupid. Apparently, you do. In addition, most people wouldn’t worry about it unless it was accompanied with some other sort of distress. In my case, I’ve been having difficulty sleeping because I wake-up to what feels like a thunderstorm of lightingbolts stabbing my head. I’ve gone to the doctor. She doens’t know what it is. Remember, my head is the only place on my body that also still itches. I value my head/brain quite a bit. I’d have to say, my life depends on it. If I were just producing a few fibers but felt fine, I wouldn’t worry. I don’t feel fine. That’s the point. And what concerns me more is that my baby daughter is always scratching her head too. Her doctor doesn’t understand why. Hmmmm…I’ll bet I know why.
As I said before, the MRF is a grassroots effort. They will improve as they grow and learn. Perhaps I will get more involved, and I’ll do my best to improve upon it in the manner you suggest.
ah
It sounds like “Exploding Head Syndrome”, which sound like a joke, but it’s a real condition:
http://www.mayoclinic.com/health/exploding-head-syndrome/AN00929
Or maybe a form of hypnic jerk called a “visual sleep start”.
Yeah, from what you describe, your large bundles of fibers don’t sound like they are environmental. But the majority of Morgellons people (those 4512) don’t have fibers like that, they have tiny fibers in their lesions – which as you said could easily have just got in there from furniture or clothing and then the lesion dried.
You don’t have any of your fibers do you? I’d love to see a photo.
Some very simple tests you can do yourself – burn, observe and sniff.
http://www.parish-supply.com/fiber_id.htm
This will give you some gross characteristics, which might give you some clues.
No, my head is imploding. I don’t have to be asleep to feel the bolts, and they occur in other parts of my body, to a lesser degree. They can make me jump as one would if they were stabbed. I wonder if I could be expelling nerve fibers? Can this happen? I certainly feels like a nerve issue. I’m sure I’ll be six feet under before they ever figure it out. I hope that my kids don’t have to go through it too though. They have also expelled fibers from their intact skin.
To be honest Michael, I don’t want this to be any more an obsession than it already is. I’m not going to play with the fibers, or else I may find that I agree with Cliff and Greema. That conclusion is just too bleak. I’m hoping Dr. Wymore can be my hero.
Now, I have not read any of you guys replies yet; I’m sure everyone is being nice though, huh?
I just finished reading the letter at the top but wanted you all to know
that I completed my 6 week training course called Doc In A Box w/ in 6 weeks.
I passed! I will be back later to tell of the location……
also, Ms. Ahera, would you be so kind to write skytroll and get my email address from her?
Now, now….for my thesis for my doctorial, I did an overnight study on fibers. It was so good, the University even printed a write-up on it.
I wrote this the night Ted Nuggent kept playing that song over and over in my living room too. I guess I did a good job b/c well, hey, they published it did they not?
http://www.biologynews.net/archives/2006/06/14/new_materials_developed_for_vascular_graft.html
and this is pushing it but yet anything can happen…..maybe, just maybe
that this happened. We all have heard before how scientist have been able to recreate spiders silk right?
Well, in the midst of my delusions one night…..I said to self: “London girl,
you have insects under your skin and maybe they are producung the
fibers.”
So, what do you know….could this be? I don’t think so really but like I said, it’s always a possibility!
This article says (thru the use of biotechnology of course) that the scientist have been able to manipulate this thing that makes the fibers
come from insects’ cells! See, This is how I was able to get my Doctors degree in 6 weeks- although it’s just an associate liscense….I am good.
A damn fine Doctor!
Here you go:
http://www.sciencedaily.com/releases/2004/11/041123115708.htm
Morgellonswatch mentioned in news story:
http://www.dallasobserver.com/issues/2006-07-20/news/feature_full.html
Hi All, Tough road isn’t it! I apologise if any of my words in the past caused any unneccessary hurt to anyone, I am just suffering like everyone else and just want this all over coz I love this beautiful world we live in. I am enjoying my day today sun shining but only 13 degrees celcius, spring cleaning in winter. Feeling so much better. I have always been a healthy girl and I will continue to fight this thing till the end. As I have said before doesn’t worry me what this affliction is called, I just want to end the pain and suffering for all of us. Take care and thanks for letting me air my dirty laundry on your blog site Michael. xx
“also, Ms. Ahera, would you be so kind to write skytroll and get my email address from her?”
Just sent you an email London.
ah
“This last part I fully agree with. These are real people with real problems, they deserve our sympathy, our compassion, and the best medical efforts to help them recover from whatever is causing their symptoms.”
This is a sentence run-on Michael. Put a period after the “problems. They..” None of us is perfect. Is it me or are you changing your tone a bit? I thought we just agreed a few weeks ago that your only interest is in helping the marginal people, those who have not fully succumbed to the Morgellons lie. Now, “they deserve our sympathy”? Respect would be just fine, thank you very much. “Best medical efforts” would certainly be a plus. Would you agree that this doesn’t always seem to occur? Does it seem to you that many doctors are permanently out-to-lunch? You make this statement above, yet you never validate any statements of experiences which negatively position the medical community.
Curious.
I like to run-on my sentences.
I may have nuanced my position a bit, but not really changed it. I think everyone deserves our sympathy, everyone deserves good medical care.
My point about the marginal people was that I recognized that people who were genuinely convinced they had Morgellons were generally not people that could be convinced that maybe their fibers were environmental.
The “marginal” people are people who do not have Morgellons, but have symptoms that match, and look and find fibers, and start to think they might have “it”. I think what I am doing will clarify the situation, and prevent some errant self-diagnoses, and help the health of those people.
ABAC68, No worries.
JeezeLouise, not a bad article. Except now I’m going to be known as “mass hysteria guy”. Still, it’s probably the most well balanced story so far.
Good Morning- don’t know what is so good about it; Heck I woke up just sucks rocks w/ in itself!
Hey, I just wanted to share this with you guys….not to see or get one to see the product this guy speaks of, but to ask if anyone knows if this person did infact Contact the MRF? Maybe this
was what one of you guys asked me/ told me that there was an fako on Slimebusters a couple of weeks ago trying to get peoples cash? Dunno, don’t really care; the point I’m trying to make
is one of simply questioning whether or not they ever made contact with MRF and what they had to say on it….
here you go:
My name is Russell Altman.
I am a lay-person with a business that exports a product all over the world for nearly ten years that makes non-palatable water drinkable. Our customers are mostly governments such as China, Indonesia, Malaysia, Mexico and many other countries in Africa.
When tested by the Pasteur Institute in France, lab tests prove that all bacteria are killed within 30 minutes (99.9%). We have many other lab results from foreign governments. Since we have never sold this product in the USA, there has never been a need for testing in this country.
My friend, Connie, has Morgellons (at least 10 years). Since my product kills bacteria, I put some of it on her arms and since she has a very bad infection in her nose, I placed the product in her sinuses. Within 2 hours she was breathing almost normally. Within 5 hours, most of the redness and swelling had gone. By the end of the 7th day, about 90% of all lesions had healed normally.
Our product is completely non-toxic, so we began to give it to her orally. This really made the Morgellons mad; Connie’s body began to expel ‘debris’ from her skin. We began hot 30-minute baths with apple-cider vinegar, then applied the product and we saw an immediate reaction; existing scabs fell off, sores ozzed and new scabs (normal) began to form.
Although she still suffers from ‘brain fog’ and chronic fatigue, we says she feel better overall.
I would like to provide the MRF, or any other recognized testing laboratory with sufficient samples to conduct clinical trials at no cost. We only ask that you share your results with us. Also, I propose to donate 10% of all profits from the sale of my product to the MRF. This is a horrible disease and I am most interested in alleviating the suffering from the children.
Russell Altman (775) 787 6161
“Now, now….for my thesis for my doctorial, I did an overnight study on fibers. It was so good, the University even printed a write-up on it.”
Where are you enrolled as a PhD candidate?
“Perhaps I’ll ask Wymore and his staff myself, and I’ll ask him/them to be a little more specific.”
Why perhaps about it? Why not just do it, and we can all have the information?
Russel Altman’s product is collodial silver (SilverDyne). It’s never been shown to work, and can be dangerous. Even Lymebusters now dismisses Altman, so I’m sure the MRF would.
“The “marginal” people are people who do not have Morgellons, but have symptoms that match, and look and find fibers, and start to think they might have “it”.”
You do realize that the above statement you made, Michael, makes Morgellons appear LIKE A REAL DISEASE. How can anyone have Morgellons if it doesn’t exists? Slip of the fingers perhaps?
These marginal people you speak of sound more like the dummies I spoke of. You’re hoping to sway the dummies who can’t tell the difference between textile fibers and non-textile fibers. You’re going to save them from their dumbness?
I should also remind you that Dr. Wymore did say that he found more fibers in the intact skin near the lesions, but not in them. The Morgies seem to be having the same problem as me. Weird, eh?
I only mentioned the grammatical error (we all make them) because you said you wanted people to correct you if they found any errors in your blogs. I guess you don’t really want to mend your errors even when they are pointed-out to you. You sound like a doctor who becomes so in love with his diagnosis that he refuses to let go of it even when the facts state that he was wrong. Is this a personality characteristic? Intelligent people are often arrogant like that.
When I asked for notification of errors, I was thinking less along the lines of a stylistically debatable comma placement, and more along the lines of inaccuracies, omissions and misrepresentations. How about pointing out some of those?
In Wymore’s letter to doctors, he says the fibers are: “often present in the deep tissue of biopsies obtained from unbroken skin of individuals
with this condition” – and nothing about them emerging from unbroken skin.
Regardless of if Morgellons is a real disease or not, there are going to be people who do not have it. I’m trying to help the people who do not have Morgellons. That’s either A) Everyone, or B) Most people. I think the evidence points to A, but either way there are people who can benefit from a skeptical and scientific look at the presented evidence.
Clearly the Lymebusters people agree (and MRF, as they support Lymebusters), that skeptical and scientific looks at evidence or lack thereof is important….
which is why so many people are banned from the board unless they’re just head-nodders…. err, ehh….
“stylistically debatable comma placement”
You’re so funny! I’ll have to use that one next time I goof. It’s called a comma splice error. If your still writing in Standard American English, it’s an error no matter which way you cut it (pun intended).
” “often present in the deep tissue of biopsies obtained from unbroken skin of individuals with this condition” – and nothing about them emerging from unbroken skin.”
If I hadn’t been scratching my legs, I imagine that the fibers would have been “in the deep tissue.” Still, how does it get there? Now that’s the million dollar question.
“but either way there are people who can benefit from a skeptical and scientific look at the presented evidence.”
If the people you are trying to help are so stupid they don’t know when it’s a little carpet fuzz, then they would probably be too stupid to interpret or understand any “presented evidence.” Good luck!
ah
Don’t you love it when someone who critiques your grammar makes a common error while doing so? Really Aherah, we can pedantically point out each other’s trivial typos, misspellings and bad grammar until the cows come home, but where’s the beef? Point to something specific on my site that is inaccurate.
I think you underestimate the degree to which relatively intelligent people can be mistaken in their beliefs, especially when misled by a seeming authoritative source. They are not all stupid, or “dummies”, some are simply mistaken.
Michael, when I PUBLISH A BLOG, it won’t have grammatical errors. Still, I find it interesting that you take such offense when someone makes you aware of your errors, however trivial they may be. If pointing out a little grammatical error bothers you so, I can’t imagine how you might respond when your not-so-trivial errors are brought to light (through science). Do what I do. Consider the worse case scenario, and then develop a psychological plan to deal with it. Then, if the worse happens, you’ll be prepared to handle it. At least you only have to develop a plan for dealing with the effect of your twist of interpretations and casting scientific doubt on issues that never had a fair day in science court, whereas I have to develop a plan for succumbing to an unknown illness and/or watching my children do the same.
It’s time for me to live a little,
Good bye
aherah
What??? Michael, you are maybe a Dr. too??? I had no idea- I really didn’t. Did you take that 6 week crash course like I did?
This is interesting to say the least. Nah, you are maybe a doctor? hmmm?
Bubbles, I’m sorry, do not mean to pick on you are the grammer- lord knows I’m horrible at all of that….but I did not understand your sentence in your last post. Was a comma, or another word or phrase supposed to be in there? The reason I ask is because I think you are talking to me.
But I can’t reciprocate if I don’t understand the question/ comment. Thanks; and go easy bubbles.
You said:
Clearly the Lymebusters people agree (and MRF, as they support Lymebusters), that skeptical and scientific looks at evidence or lack thereof is important….
******************************
I think the problem is simply an incomplete sentence perhaps?
oh yeah, I got my degree from The university of DOPish
and….Bill and Melinda gates own it- I think!
Morgellons & Everyone,
FYI, New article today (July 20th) in the Dallas Observer by Jesse Hyde; “The Plague”.
In case your not yet aware of it, he wrote some about you: Michael from Los Angeles.
http://www.dallasobserver.com/Issues/2006-07-20/news/feature_full.html
Igi Ydgi
Yeah, I read that part too. Available to comment thru email or something?
Aherah, I don’t mind at all about you pointing out mistakes – I’d just like you (or someone) to point out some of those “not-so-trivial errors” that you mention, so I can fix them.
First, like Igi Ydgi, I tend to think the fact that thousands of other people who experience the same strange fiber/skin phenomena along with the same needle-stabbing sensations as I experience is just a bit too coincidental for me. The fact that many of these people are located in the same area I was when I initially began having these problems adds to the lengthy list of coincidences. Then there is the fact that I have received the diagnosis of 1. scabies (wasn’t it) 2. folliculitus (wasn’t it) 2. DOP (wasn’t it either). In the older versions of the MRF web-site, they listed these diagnosis as among the top five or so that this group receives. Will the coincidences never end? Then there is the fact that over 90% of this population has had a positive Lyme test. Hmmmm…I never knew that a false-positive syphilis test could be indicative of a Lyme until I did a little research: “Patients testing positive with serologic tests for syphilis may also test positive for the Lyme antibody tests” http://www.igenex.com/lymeset2.htm . I don’t know that I have Lyme, but I do know that I had a positive syphilis test time and time again that made panicked military doctors chase after me with a syringe of penicillin. As a seventeen-year-old virgin, I should not have had syphilis (my mother didn’t), but I did get bitten on the face by something in the bushes that caused a circular rash years prior to the blood tests. I abused diet pills in high school because I couldn’t stay awake despite the fact that I got plenty of sleep (and wasn’t fat). Could it be possible that my body was fighting something off already then? I think yes. Maybe Lyme…maybe whatever Morgellons is that turns a Lyme test positive. Then there are the posts on lymebusters in which other people describe my experience, “snap, crackle, pop,” using the same unique phrases that I have only ever thought to myself, or the posts in which they can describe a feeling that I had felt but was always unable to attach a word to (honeycomb). No doctor has been able to validate and/or explain what I was feeling, but many a co-sufferer has. I believe that I’m smart enough to know when the accumulation of coincidences indicate something medically strange is going on.
The argument you always fall back on is that there is no scientific proof. You ignore the fact that the medical community has had ample opportunity to study the samples brought to them, but instead throw them away and stamp “crazy” on our heads. They dodge every opportunity to investigate it and report it to the CDC. They are taught to go by the books, and the books all say “matchbox sign = DOP.” In some cases, and I include myself in this bunch, what we get is a group of angry, frustrated, sick people who are learning to be helpless—learned helplessness. You say we’re “in love” with our disease. I say we just don’t see a way out anymore. I hate it. I hate it. I hate it. I hate it. I UNDERSTAND WHY ONE MIGHT CONSIDER SUICIDE! And I can’t bear any more humiliation or disappointment. I’m just damned, that’s all. I don’t even want to dislike you Michael. I like smart people. I like to think. But, as a skeptic, you have positioned yourself to be one of those who ignores the long list of coincidences, supports the medical practices that demean us, and demand proof where many of us have given-up trying to provide it. You should have asked me a year and a half ago.
People are convicted of murder on less circumstantial evidence than this. You’re a smart person, why can’t you see this? That’s where motivation comes into play. You must be a doctor, but you can’t say so lest someone mistake your suggestions for medical advice. In addition, your response to the grammar mistake was typical of a doctor (I’m not wrong; I meant to do it.) I have to go…now I have a headache.
Aherah
I hope it doesn’t implode.
I’m clarifying my opinion more than I had in response to abac68’s prior repetitious postings of Dr. Wymore’s letter during the first week in June. Since “morgellons sufferers” are present, I apologize. At the same time, I feel for their presence on a “morgellons disease” debunking blog, as much as I feel for seeing it overrun the topic on The Museum of Hoaxes forum. It’s misfortunate that they’re drawn to such sites and inadvertantly afford readers such an in-depth view into understanding the etiology behind “morgellons disease”.
Again, for the sake of cognition, these are my opinions and not representative of those held by Michael’, or anyone else. However, for those of us who aren’t anal-retentive, non-compliance to issues of proper grammar are hardly relative.
Naturally, the majority of our doctors know how to practice medicine and society, as a whole, knows it. What has escaped the minds of some people is the obvious difficulty in understanding the role of responsibility that the patient has in their own health care. Whether a doctor “can” do their job, depends on the patient. For starters, we can check physicians’ credentials. Effectively communicating all our symptoms and concerns is a key element. Patient compliance is also essential. None of us can guess where morgie people entered into the health care system, but they are definitely ill-equipped, ill-informed, and quite disillusioned about the entire process.
I propose that we all go back to square one to realize how we’ve gotten to this point, concerning “a patient population that manifests a particular set of symptoms we have encountered with increasing frequency”, and the condition that “has been labeled as Morgellons Disease and it is unclear if this is a single disease or a multi-faceted syndrome”, as Dr. Wymore states.
We are quite far from “where it all began”. I urge anyone who is puzzled over this phenomenon to consider that point, and work their way through the development of this concocted “disease”. Morgie people angrily accuse me of conjuring up the things I have said about that. From participating on their message boards an extended period of time, and taking the circumstances into consideration, it’s clear what has been all important to this population of patients.
If the past news accounts on the topic had been inaccurate, Mary Leitao has had four years to come forth on the matter. Back-tracking, now, as it seems, in a San Francisco Chronicle news story from last month, as well as in the article JeezeLouise gave us a link to, embellishment is suspect. The details of her story and the reasons for her endeavor needed to be told on her web site, but never was in all these years. It really never needed to be, to reach the audience she wanted to and to acheive the results she was after. Being believed was all it took, and leading such people further into her plan.
As the doctor continues on in his letter, “Most of these patients”, defines what can be none other than the 95% DOP diagnosed patients, who, on the average, have seen 10-40 doctors, disillusioned, and insisting that physicians don’t know how to practice medicine.
We have excellent reasons to doubt that all of the suggestible people hearing of “morgellons disease” for the first time and deciding that they have it, are even anywhere close to being in the same league as “the original group” of followers.
Part II
There’s a whole lot more involved in the mental status within this group of patients besides just simple “brain fog”.
Some doctors might almost be a bit interested in the results of those “careful patient histories and thorough physical exams”, Dr. Wymore referred to. I know what viewing the written word of so-called victims of “morgellons disease”, for a little over one and half years, led me to conclude, which is the same opinion I’d arrived at in the beginning.
Here’s a prime example, of just one situation, found within the follow-up comments’ section below this Dec ’05 article. This person is just as easy to read about as any of the other “victims” who regularly post over the internet, having even listed her revealing lab reports on line in the recent past.
CLICK
The “so-called morgellons victim” I’m referencing, here, definitely has serious health problems, and, yet, she is oblivious (even though she isn’t). We have to consider the reason. It could very well be due to some associated neuropsychiatric effects of her sarcoidosis, for all we know (of which, she is in deep denial of even having). A couple of serious things that factor into her personal equation, as it does for all of these people, both have names which begin with the letter “M”.
I know I’m not the only person who realizes the gravity of one woman’s endeavor and its accelerated, far-reaching,
effects on this population of patients. Some of them have decided, along the way, that they don’t like the name of her disease which they signed onto as having. Unfortunately, so far, at least one person who’d declared to have this has re-named it and already begun an individual effort with the CDC to get “it” recognized.
.
Reporting his lab variables, as well as numbers, in his letter, “might even” appear to be assistive to doctors, but I doubt it. I have carefully observed the written accounts of an awfully lot of morgie people, with many complaints that all that their doctors did was to run a CBC on them. Some have said that their CBCs were fine. Some have reported high neutrophils, indicating bacterial infections, even saying what their doctors prescribed. There are those who declare that they have parasites, without any elevations in their eosinophils. Such persons as all of these would have elevated eosinophils in their CBCs if they were having allergic responses.
Just as it goes with everything else, it does absolutely no good to explain that CBCs are done for a very good reason, to begin with, and that they reveal a lot. No, they all have “morgellons disease” and are dying from it. What tests their doctors have performed have all been the wrong ones. They’re disillusioned, as I have stated, truly believing that it is the right of a patient to demand what they request. Mary Leitao had felt the same way, angered over her son’s dermatologist having, as she put it, “no innate scientific curiosity”. MRF has reinforced those unrealistic expectations.
Dr. Wymore’s letter describes “the skin lesions”, and, yes, many people have received sound diagnoses from trained, and skilled, practicing
physicians, as well as having been given prescriptions and referrals. It hasn’t been what they’ve wanted to hear, though, and they’re ill-equipped to empower themselves as active participants in their health care, and in the care of their children and pets. Saying, “I believe you” and promising to find the answers for them, makes one truly aware WTF The WTF Foundation is about.
If such patients were receptive to their diagnoses, they could move onto the pathway of treatment for what they think is “morgellons disease”. A patient already in possession of any former knowledge of how the medical system works, and who may already know of any health conditions that they have, that they could attribute their strange symptoms to, should, naturally, fare much better in understanding what has happened to them. For those who aren’t familiar with underlying conditions that may be affecting them, being as mixed up as they are when they see a doctor, until their minds become clearer, they may never get those underlying conditions detected, if they don’t have adequate communication skills to convey their symptoms. However, having said all that, what I have left to say, is that the Nancy Hinkle article that Michael supplied a link to is superb.
• “Microscopic examination of these lesions will most often reveal the presence of unusual fibers, which may be black, blue or red. These fibers, which many healthcare providers initially thought to be textile contaminants, are often present in the deep tissue of biopsies obtained from unbroken skin of individuals with this condition. Careful examination of these fibers further reveals that they are frequently associated with hair follicles, and are definitely not textile in origin.”.
.
“Other symptoms of varying severity and frequency have been described, and are included in the attached case definition.”
Back to the elemental square one, now, of how “it all began”, and work up through each step to the present. In my opinion, the creation of a non-existent disease and a research group to appeal to this population of patients is so wrong, in so many ways.
“Morgellons patients differ from classical, delusional parasitosis patients in several areas. They do not respond to antipsychotics.”
*As with everything else, without validating his assertions that such patients differ from classic DOP (which you don’t have to read very far and wide to see that most don’t differ, at all), and his claim that they do not respond to antipsychotics, this unique and simplistic letter says a lot. To me, it appears to be more indication that something is very off-track with the author. Personally, I have no reason to think this letter can have a positive effect on any doctors, other than, perhaps, more of the unscrupulous types who will want to join in and ride this for all it’s worth.
Do I discount that there are very ill people with sarciodosis, lupus, lyme disease, MRSA infections, cancer, diabetes, and a host of other serious ailments “regularly mentioned and disregarded by this patient population”…NOT ON YOUR LIFE, I DON’T. Neither do I discount the commonalities in the variations of other explainable issues for people who truly believe they have “morgellons disease”.
Not taking into account, “newbies” in a decisional phase, the major problem with this patient population is, of course, health neglect. Communication gaps and non-compliance in their health care, spirals them downward into often involving the loss of their livihoods, their belongings, their families, and pets. This neglect and apparent failure to see its causes, at whatever phase it’s in for each of them, made such people susceptible to falling for the myth of “morgellons disease”. They aren’t all stark raving mad, but I pause to wonder what effect adequate treatment for depression and anxiety might hold for some. Maybe something as simple as a mental health test in their problem solving functions could reveal some helpful clues to them. It appears more needs to be done, but their general consensus is that their delusions are real, and, therefore, they think that they don’t need any mental health care.
Without some form of a health advocate to assist them, to do their speaking to their doctors for them, and to help them interpret things correctly, and without that all-essential patient compliance, unfortunately, I am of a firm belief that this patient population will continue along on the same devastating paths they’re on. They cannot help it, the MRF is not what they think it is, and they truly can’t help thinking any other way.
It seems that Dr. Wymore’s letter was emotionally constructed out of a place of empathy for the patient, but I feel it may not be too well received, in telling practicing physicians how to do their jobs. I wouldn’t want the notoriety he’s bringing
Since the claims that this phenomenally “new disease” prevails in late-stage lyme disease patients, and that disease supposedly now has newly discovered cutaneous symptoms, including localized scleroderma, and has been reported as having definite neuropsychiatric effects, please read this link on sarcoidosis and take notice of the 65 differentials.
“Known” real diseases and conditions are explainable for this population of patients. In the real world we all live in, things have to be seen for what they are..
http://www.emedicine.com/oph/topic451.htm
Aherah, you said: “I believe that I’m smart enough to know when the accumulation of coincidences indicate something medically strange is going on.”
I also believe you are. However, just because you intellectually capable of deducing something, does not not mean it will automatically be apparent to you. You are obviously a very intelligent person, you know a lot about language.
But what of statistics? Statistical analysis is how you take what appears to be an unusual coincidence, and see if it actually augers some causative correlation.
Take an example I gave before. Take 1000 people, and have them all toss a coin ten times in a row. Odds are that at least one of them will turn up tails all ten times. Is this somehow unusual? No, clearly not.
Now take 10,000 people, perform the same experiment. About ten of them will get heads every time. Get those people together, have them compare notes (“Dude, it just kept coming up heads!”, “I, like, knew it was going to come up heads, and it, like, did, like TEN TIMES!”). Is this group of ten people special? Clearly not, they are just the ten people who happened to get that particular combination.
But to that group of ten people, they just had an amazing experience they will remember forever. They feel somehow unusual, different to the other people.
Expand that to 300,000,000 people. Some of them are unlucky enough to have something like chronic fatigue syndrome. Some are unlucky enough to have something like atopic dermatitis. Some are unlucky enough to have a disease with neurological symptoms. Some are unlucky enough have all three. It is inevitable that there will be many people who have all three.
To those people, they feel unusual, and when they meet other similar people, they compare notes, and discuss how unusual this all is. They feel they must have something in common that is causing this strange set of symptoms, maybe a new pathogen?
But it is inevitable that such groups of people exist across the country. Prior to the Internet they could not find each other, so they just felt alone. But now they can easily discover similar people, and form support groups, and give their particular set of symptoms a name, and seek out the cause.
They don’t stop to think: “maybe it is a coincidence?”. Yet such coincidences will inevitably happen. Probability dictates that they must happen.
So unfortunately you need more evidence than “is seems like a highly unusual coincidence” to demonstrate that there is something specific behind this group of people sharing similar symptoms. You need to demonstrate to a reasonable degree of confidence that it is highly unlikely that such a combination and such a grouping would not happen by chance.
In other words, you need to demonstrate that the “null hypothesis” (the hypothesis that nothing particularly connects these events) has a very low probability of occurring.
This probability is generally referred to as “p”, and has a value between 0 (certain that the null hypothesis is false) and 1, (certain it is true). It’s often expressed as a range, like (p<0.05) (p less than 0.05), generally values less that 0.05 are accepted as being a reasonable demonstration that the null hypothesis is false.
So, for the strange set of symptoms that is said to typify Morgellons, we have to ask what is the range of p here? what is the probability of the null hypothesis? In other words, what is the probability that this is just a coincidence?
If you have a well defined set of symptoms, you can work it out reasonably well by finding the intersection of the conditions known to cause those symptoms. With a looser case definition such as the MRF definition, this intersection become much larger, and so p becomes a lot larger, and the null hypothesis (a coincidence) becomes much more likely, approaching 1, near certainty.
In your own case, fibers aside, what is the probability that a bunch of people have these symptoms? I think if you define what they are, you will find a fairly high probability that many people will have similar symptoms.
Then all you have left are the fibers. They are the only thing that makes this thing really unusual. Fibers emerging from the skin cannon be explained by statistics, it’s something unknown to science.
Unfortunately, nobody has ever provided any evidence that they emerge from the skin. Yet I’ve provided a lot of evidence that fibers are everywhere, on your skin, and will inevitable find their way into open lesions. I’ve also show that a lot of the fibers that people claim came out of their skin, look a lot like regular clothing fibers. Based on the evidence, I have to think it’s more probable that the reported fibers are mostly, if not entirely, environmental.
So, I ask for evidence.
Show me some statistics.
I’m so sorry Michael. Numbers are not my forte. I never took a statistics class. I sure wish someone would run these numbers though. I’ve always said that the numbers would speak for themselves; I just don’t know how to do this. The crux of my belief is not that other people share my symptoms, it’s that I’ve had this since way before the MRF, and yet they seem to have nailed my experience. There was no MRF in 1992, and I had fibers. I’m just not qualified to prove that I have a fiber, stinging, brainfogging, swelling, head itching disease. See, I’m damned. (Smiles and TC would agree). All I can hope for is to stay above water day-to-day. I’ve been able to do that for the most part. It is asking too much of me when you ask me to prove my disease in a scientific or statistical manner. I’m just a little ole stay-at-home-mom afterall…
…but I know a lot about people.
“He who knows others is wise, he who knows himself is enlightened.” –Confucious
“If you build it, they will come.”
With 95 % of the Morgellons registrants having been diagnosed, several times, with Delusions of Parasitosis, saying “most” have received this diagnosis is quite an understatement. These people have an unshakable belief that they are being parasitized by an illusive Morgellons pathogen. There is no logical reason for this belief, but a few visits to the forums of the Morgellons believers will bear this out.
The classical definition of Delusions of Parasitosis is an outdated definition. According to the “classical” definition of Delusions of Parasitosis, some of the these people may not have DOP. But a lot has been learned and published about DOP since Ekbom’s time. These patients have “already” insisted that they are infested by organisms, based on no evidence.
This doesn’t necessarily mean that their symptoms aren’t real, or that their eyes are deceiving them, but it does mean that they have DOP. One can be very sick, physically, and still be delusional. They can also be delusional without seeing things, “visually”, any different than anyone else. The delusion is often in their non-sensical interpretation of what they see.
Everyone needs to study Delusions of Parasitosis and learn about its different catagories. There are also cases in which the patient and the patient’s doctor share the same delusions. In my opinion, it’s obvious that Dr. Wymore and Mary Leitao are both as sick, or sicker than, the Morgies they investigate. And they are leading a lot of vulnerable people astray.
There is no evidence that Morgellons is a chronic disease, a disease of any kind, or even a syndrome. There is, however, plenty of evidence to the contrary. Some of these people have real physical problems, but it’s quite obvious that most of these people also have very serious psychiatric problems. Can you think of a single Morgie that is playing with a full deck?
The Pro-Morgellons movement is causing great harm to people who are vulnerable to its deception. Many of the the Morgellons believers are rejecting accurate diagnoses from their doctors and forgoing needed medication because they have become convinced that a pseudo-disease called Morgellons is responsible for all their ills. The message boards of the believers are reinforcing these delusions and supporting harmful practices.
Morgellons debunkers are expected to wait on Dr. Wymore to identify the cause of a disease that doesn’t exist, as needless hysteria spreads around the world. People are being convinced that they have a life-threatening disease, called Morgellons, while other real medical problems are compounded. The Morgies want to silence the debunkers, but while the CDC conducts a proper investigation, the believers continue spreading their madness.
It all started with a young boy named Drew, and it was started by a woman whose cheese had slid plumb off her cracker. Do you remember the movie, “Field of Dreams”. “If you build it, they will come!” Well, she built it, and here they come. They’re coming with Hyperthyroidism, Diabetes Mellitus, Rheumatoid Arthritis, Hypoglycemia, Carcinoma, AIDS, Anemia, Stress, Lyme Disease, Sarcoidosis, Eczema, Psoriasis, Scleroderma, allergies, folliculitis, and a host of other real problems. They’re flocking to the MRF and message boards of the Morgellons believers to join the insanity..
Tall Cotton
So these ten guys out of 10,000 toss ten heads in a row. They form a group, call it “Decacaput Ventilo Syndrome”.
Then later, this guy comes along, he says “Whoa! That’s crazy, eight years ago, the EXACT SAME THING happened to me!”
So he joins their group.
The numbers published by the WTF Foundation are also meant to deceive.
well written Smilykins; yet I disagree with a lot of it. That area would be the new emerging diseases that they just post to what seems like every other day! I have witnessed papers from the CDC being backdated.
EXAMPLE: I was told, both verbally and in writing, that Leishmaniasis, or the filarial worm that is indiginous to sub-Sahara Africa did not exist in the United States. This was told to me sometime I’d guess around the latter part of February 2006. (We had even heard that our men from Desert Storm were bringing this back with them) But no, dammit, the CDC said No-it did not exist here.
My Lord June 1st rolls around (25 days after Bush pulls his illegal alien stint -May 5th) well, we now here…..Leishmaniasis in the US is probably due to the increase infrequent visitors to South America. Now what the hell was that stupid comment? I mean, do they sit around and smike wacky-weed in their lil greenhouses and conjure up the bougus stories and lies?
I’m sick of this. I am now going blind. My eyesight is deteriorating rapidly.
I was in shape and used to be a gymnast – I nearly fell down 2 flights of stairs last night. ( and I was not drinking either!) I drop things a lot.
Last week my sig., other drug me out of the house to go to dinner. I cried and did not want to be seen in public due the lil hole in my cheek! While I was there, sitting at the dinner table I misjudged the distance for my hand to place the large glass of ice-tea down on top of the table. Both dinners were ruined- I just ran out crying.
you gd right there is something wrong with us smileykins and it is caused from the gm organism that has infected us all with similar symptoms!
so go to a doctor and properly convey our symptoms and let them take it from there. Done that! All things come back negative…….
Why is that? Is it b/c I am DOP? Hell no that is not it. It is because this is biotechnollgy at it’s finest! You see, the medical profession needs to take some refresher courses. They should all have to successfully clone
a bald eagle or something……this molecular tchnolgy is out of their league.
And then, there is the lack of big machines that do the testing….how much do one of those cost. Probably as much as those F-16’s we seem to crash
everyother day and charge the taxpayers forl
Smiley, you yourself have commented on the many fake-what I call ghosters, that write on those message boards…….do you have anyidea what the gov’t is paying for that? I think that money should go to research- don’t you???
You said something up above about having parasites/worms and ones esoniphile and /or their neutrophil counts elevating…….
But has anyone ever stopped to ask this……what Dr. would you consider to be a reading/ or a count on ones CBC for their esoniphil counts if one is indeed infected with ….MOLECULAR PARASITES!!!!!!!
hAS ANYONE EVEN GOOGLED MOLECULAR MORGELLONS??????
WELL YOU SHOULD GD IT!!! BECAUSE IT IS HERE AND IT IS NOW AND THIS DISEASE HAS AIDS WRITTEN ALL OVER IT!!!!
jUST WAIT …..THEY NOW SAY THAT BEING INFECTED WITH PARASITES-IN PARTICULAR FILARIAL WORMS NOW MEANS THAT MORE THAN LIKELY IT WILL TURN INTO AIDS.
AND NO, HELL No , I’m not trying to scare anyone. This is not the isease I discovered at all when I said I had found what this is…….
But the more and more I look at this…..it screams aids in the making.
Now, go do this….go google molecular aids…..you see, i’m tired of this treatment. This is all molecular and that is what they planed on since
1990!!! that this will not show up on test…..
and while I’m blogging my rant, I will throw this into it too……that disease I ws referring to that I had found to be the answer….well, lets just say they changed the wording….in other words-there was different species of this and they grouped them all under one umbrella for language purposes…whatever. But just last night I read that out of the 10 or so species 9maybe even 14…..that guess what???
THAT ONLY TWO OF THOSE SPECIES WILL EVEN SHOW UP ON MOLECULAR TEST!!! So are we screwed. or what????
and Aherah , I just read your post up above….where you speak of folliculitis……I just saw it the other day……
it is something that “they” (from the smoking in the greenhouse section)
have conjured up a new one for that even…..you all will see soon enough….there was not but maybe 5 aticles on folliculitis on the WWW back two months ago….unless you wanted to get technical and speak of the overy and folliculitis…..
but this folliculitis that you and I and we all talk about is the hair follicles is our dermis and epidermis…..
well, like I said…..they got another new one just a few days back….hell it even has both words that we have discussed here tonight….esonphil counts and folliculitis…..
is this not special……????? They are making the diseases up and this is illegal and this is not right!!!
hell, I would not care…..would not even talk about them ever again….just if they would get me well…….and call off the DOP hounds……
well, as long as they are going to create this molecular crap and their moloecular bogus stories……I will keep following them with my molecular fingers that have those molecular fibers theygave me…..right here, pounding on my keyboard….
Tall Cotton said:
They’re coming with Hyperthyroidism, Diabetes Mellitus, Rheumatoid Arthritis, Hypoglycemia, Carcinoma, AIDS, Anemia, Stress, Lyme Disease, Sarcoidosis, Eczema, Psoriasis, Scleroderma, allergies, folliculitis, and a host of other real problems.
yeah, I agree….but they got that crap over night due to wsomething called gene translocation…….you see….their lil wicked gm microorganism
they let lose (it was no gd accident!) has the ability to cause this…..it infects the arthropods to the crustaceans…..then they infect us.
What the hell do we do? what are we going to do????sit here and bow down to those mf-ers???? we are dying you guys!!!
i’m thru ranting and I do apologize if I scared anyone. I have no idea at all if this has anything to do with HIV or AIDS . I just said my opinion….my feeling….that is what I think…..I have no proof, nor have I read that ANYWHERE….just my lil HYPOTHESIS……
You know what guys, I think I have a new name for this thingy bingy sickness. I call it the human magnet disease. Does anyone relate to that one?
OK Michael, You make a lot of sense. Tell us who you are.
And while you are hard at work, please address the letter on morgellons.org written by Dr. Greg Smith, its medical director. Go directly to the paragraph where he states he believes he and his wife have been chosen by God to play a role in solving this medical mystery while pleading for donations from sufferers. Hmmm.
The sword of time will pierce our skin
It doesn’t hurt when it begins
but as it works it way on in
the pain grows stronger watch it breath
Hey London, you doing okay. Don’t tell yourself you’re dying. You are a strong strong girl. Tell yourself – I’ve got faith of the heart, I can do anything.
Go find yourself a lemon tree – get lots of lemon juice in water – one of the richest forms of vitamin C. This group of people have a low PH level in their blood.
Isn’t it funny how years ago when we were kids we were told to have lemon and honey. It still works.
Keep the mind sharp. I’m thinkin of ya girl, you will be OKAY. Hang in their.
OOpps – sorry about the spelling!!!
Thanks ABAC68, I needed that! Matter of fact; I do have some lemons in the fridge…..
the worst part for me…..is the tiredness. I sometimes get tired just standing up to take a shower.
Does anyone know where I can get some drugs? I want the worst on the street. what is that> Crack Rock?
I swear I wish I knew how and where …….I’m kidding, but I’m not.
I would only go get it one time…..how much would a 3 month supply cost me……that puts me living until the middle to latter part of October huh?
I swear, If I find out what I think I know from my “gut-feeling” this is what I will do. At least I will die a happy bitch, huh?
Hey, what do they have at a feed store……hehehe
Cutmeabreak, you must mean this:
I think religion is obviously an important foundation of Dr Smith’s life. It must provide the frame of reference for all that he does. Some people are just like that and some are not. It sounds somewhat odd to an atheist, but maybe quite reasonable to a christian.
I try to avoid religion and politics. That way madness lies.
Amen!
Michael said:
Expand that to 300,000,000 people. Some of them are unlucky enough to have something like chronic fatigue syndrome. Some are unlucky enough to have something like atopic dermatitis. Some are unlucky enough to have a disease with neurological symptoms. Some are unlucky enough have all three. It is inevitable that there will be many people who have all three.
Hey math Man, could you possibly tel me how both My fiance and I both woke up this one saturday morning with feet and ankles swollen with purple looking bruises dancing around to different areas?
Could you tell me how that one month later we both go to Doctor and get a veinous compression diagnosis? then a month later we both get a rheumatoid arthritis as a high suspect in pur diagnosois?
Could you tell me how those swirls/ designs got on m carpet for two weeks?
Could you tell me the probability of my dead father (ghost) coming into my home for two weeks and tearing off shreads of tissue and scattering them about?
could you tell me how or the probability of him folding each tissue to replicate the one before??????
Please, could you tell me this?
Aherah Says:
July 20th, 2006 at 6:16 pm
“He who knows others is wise, he who knows himself is enlightened.” –Confucious
Then prove to yourself you’re enlightened, choose a dermatologist from your yellow pages, and go get your and your baby’s scalp conditions diagnosed and treated.
that’s what I did. she charged either 379.00 or 329.00 for a twenty minutes session but that did include two biopsies. what were they? One was Staph…..well, duh, it was used in the clone as well as Strep. The other was….you will love this…..”UNIDENTIFIABLE’
She gave some meds for the folliculitis, we took them, we went baack -she charged us again…..12 weeks had gone by….the biopsy she did on michaels shin had still not healed……she blamed that on his veinous compression (which he suddenly inherited over night-two months prior to the derm visit) ahhhh, oh yeah, she prescribed this body mouse medicene in a canister…..for a mere $ 130. It burnt me. ahhh, the
meds did work on the folliculitis…..
But not 3 weeks go by…..’THEY WERE BACK…….!’
HERE; THIS IS MY PAPER I HAD TO DO IN MY 6 WEEK DOC-IN-A BOX COURSE. MAYBE ALL THE DOCTORS WE GO TO FROM NOW ON SHOULD READ THIS OUTSIDE THE DOOR AND THEN POLITELY EXPLAIN IT TO US WHEN THEY ENTER,
I’D PAY FOR THAT VISIT ANYDAY! AND,,,,,,THIS IS THE EASIEST ONE OF THEM ALL> IT IS THE FIRST STEP IN MOLECULAR CLONING
http://www.cytoskeletons.com/showabstract.php?pmid=16218834
ooops! I nearly forgot….take this paper to your next Dr. visit, I am.
http://books.google.com/books?id=L6OCIwb08LwC&pg=PA171&lpg=PA171&ots=hm5Px7mRjU&dq=+Molecular+Medical+Microbiology&sig=O7advB5K2NTuuohZojrfFIn_DUA
London, from a statistics point of view your experience is what they call an “outlier” – something so different from the rest of the group that it can’t really be considered part of the group. You have transcended math.
Speaking of math, did you ever read how John Nash ended up dealing with his problems? I’m not saying it’s the same thing, but sometimes it’s more cost effective to simply manage things, rather than to be continually fighting them.
Yesterday I said:
That area would be the new emerging diseases that they just post to what seems like every other day! I
and I yelped…..The reason they can do this to us and get away with this is because it is Molecular….it more than likely will not show up in your testing!
Sure, some will if you get a PCR test or molecular testing performed.
Yet, I’m sorry to say- some are just not identifiable; they are uncultivible.
Remember I said “EMERGING???” WELL here:
~ Abstract
Diseases due to uncultivable bacteria could represent emerging infectious diseases. However, the growing importance of these pathogens remains ill understood and undefined. Non-culture based approaches, especially molecular genetic methods are evolving as the most important tool in our understanding of these enigmatic pathogens. This article attempts to discuss the scientific implications of the evolution of uncultivable bacteria, review the recent trends in identification, and highlight their relevance in clinical medicine.
hah! Hey Michael….I just saw your post there….”I transcended math” hehe…
John nash? Oh, yeah, I used to go out with him….. 🙂
Okay, so I need a manager; you game Michael?
and I don’t think I’m fighting the problems as much as I’m fighting the truth behind the evil, satanic makers of the problem…i.e., disease.
But yet, they probably go hand in hand. Anyway, I do need a manager….both for my problems and for my bands too.
Do I get 10%?
Why of course, of course…..sometimes though I’m the only one in the audience. But other nights- it’s packed ! LOL
Well, I must leave my brethren today and go outside with more bugs and run errands…..
But here is some food for thought…..actually, it’s not . It’s more like food to chew on…..
I think my favorite organization (you know, the gov’t one that starts and ends with the letter C) well, I think they may have had a meeting or something lately. I’m thinking they have yet again, changed what our disease is going to be called. Time will tell. but I’m betting I’m right…..
Well, this means my delusions will have to get another lead band to play on Tue and Thur, because Ted will be booted. HAHA aand Have a HAHA nice weekend you guys!
“Speaking of math, did you ever read how John Nash ended up dealing with his problems? I’m not saying it’s the same thing, but sometimes it’s more cost effective to simply manage things, rather than to be continually fighting them.”
Sure Michael, I manage it as best as I can.
Nash knew his disorder. They could explain it. He understood the parameters of what or whom it can affect. Based upon that knowledge, he was able to develop a plan for how to manage it. Having an unknown condition that may or may not be contagious is not the same as having one that is understood, affects only the sufferer, and can be managed through the normal channels of mainstream medicine. Nash didn’t have Morgellons.
Maybe I die from the final bolt that strikes my brain. Don’t I at least deserve to know why or how? I hope to live a long, happy, robust life, but until they figure this thing out, I’m scared. I am concerned for my children. You see, if I were the only one to have seen the things that I’ve seen, I could very well call myself delusional. When my mother, brother, friend, husband all can see it too, I can’t buy into the delusional theory. Yes, I’m familiar with the folie à deux, folie partagé. B.S. I say. In the case of my mother, brother, and husband, they didn’t want to see it. In the case of my friend, she didn’t even know we were having such bizarre medical issues (I hadn’t told her), but she saw the fibers on my son and me. Denial gets you nowhere, and labels like “DOP” do nothing to inspire scientific research.
ah
Anyone on the brink of deciding whether they want to believe they have “morgellons disease” who has similar symptoms to those described above, should keep their legs elevated as much as possible, see a general practitioner and describe their symptoms (reasonably), and it might be prudent, depending on the circumstances, to ask for a referral to a specialist in the field of cardiology/vascular medicine.
There is no folie à videocámara, and since the major part of your problem is in convincing people that it is real, then why can’t you devote a significant portion of your time to getting evidence on tape? You’ve had it for ten year, it seems like spending a month learning how to best use a video camera, and then getting evidence might not be unreasonable?
All the time you spend on the internet?
Excuse me, I was referring to what is listed as being “venous compression”. Naturally, anyone having chest pains, dizziness, and shooting pains needs to convey that to a physician also so it can be further looked into to find the cause. We certainly don’t want do be heart attack, stroke, or dialysis, patients in the future, because we’ve ignored health warning signs.
No, I’ve had it for fourteen years, ten of which it seemed insignificant. A year and a half ago it was full-blown, and I was freaking out. I never knew I would see what I saw or else I would have positioned the videocamera to catch it all on tape. At this moment, I don’t have anything significant to tape. I can’t video the sensation of stabbing in my head now, can I?
ah
Smiles, I’ve been to the doctor, my daughter has been to the doctor (twice), but thanks for the concern.
ah
I still can’t get over how awesome that Nancy Hinkle article is, Michael. I doubt many looked at it, but it sure would help some, if they could.
Well, Aherah, I’m sorry. I was only going on what you’d said, within a post here, somewhere, about not having even been to a dermatologist yet. When I’d read that, I’d thought that maybe you were waiting on something, rather than making the appointment yourself. Why you aren’t telling your doctor the serious symptoms you have mentioned, of chest pain, shooting pains in your head, and dizziness, you’ve stated, is because you haven’t wanted to give her too much, and have her think that you were a hypochondriac, as well as more recently saying, that you didn’t want to load her up with too much as she was already researching things to try finding out what is wrong. It seems to me, that focusing on concrete health matters which need to be addressed is a better route to take. That’s all.
It’s very good article on DOP. Some of it is clearly relevant to SOME of the people who think they have Morgellons. Check out table 2, lines 6,7 and 8:
6. Waxy looking fuzz balls (Schrut and Waldron 1963, Hinkle 1998)
7. Granules about the size of a grain of salt (Schrut and Waldron 1963, de Leon et al. 1992, Hinkle
1998)
8. Long hairs that move independently (Hinkle 1998)
http://www.ent.uga.edu/publications/delusory.pdf
Remember, I’m only saying that SOME of this applies to SOME people. There are a lot of things going on here.
i will be fucking with you soon my friend… pretty soon, all of the things you say and post here will be open to public ridicule elsewhere…
you fucking bitch
No need to be sorry Smiles, I’m not offended. I also prefer to be nice.
“Why you aren’t telling your doctor the serious symptoms you have mentioned, of chest pain, shooting pains in your head, and dizziness, you’ve stated, is because you haven’t wanted to give her too much, and have her think that you were a hypochondriac…”
The chest pains have subsided. I have shared all other issues with my doctor, as I have stated before. Her response was “that does not sound like anything I’ve ever read in my medical books.” Apparently, if it’s not in the books, you’re done for. Hmmm…I think I knew that already. She doesn’t feel the need to do a thing. I also shared this information with my newbee sycophant doctor a year and a half ago (prior to the discussion of fibers and ensuing DOP diagnosis). I told him I was so dizzy, I didn’t feel I should be driving. He checked my adrenals–all normal. End of story. It just seems that every trip I take to the doctor is a dead-end. Maybe I have given-up. You get to a point where you feel you have to take your health into your own hands, even though you are totally clueless about what to do. After a while, Hulda Clark starts to look pretty good. I recall that you had at least one negative experience with a doctor. I also recall that you claim TC was misdiagnosed. It can happen, I know. Michael doesn’t want to talk about that though.
ah
Oh yeah, there is a truckload of different things going on, now, after Mary Leitao expanded the original malady. “Some people” is all that I’m saying as well. I know from having it, and I know from hearing about “morgellons disease” and being directed into looking into the matter and walking among so many people on lymebusters’ message board in the past (and another message board, as well), though, that a lot of them are DOP. People don’t know when they’re in a delusional state. It is a heckuva lot more than simple misinterpretations of things. Oh, yeah. Big time. That’s your very world. That’s your reality. Lucky for me, my body being sick was all that caused it to manifest in me. There is an abundance of people thinking that they have “morgellons disease” who are in complete denial, for some reason, that they have very serious health conditions. What leads them off course from ever having learned anything about their diagnosed conditions (not DOP, I mean the things aside from having that manifest, which are to blame for it manifesting), is nothing short of incredible.
The complete lack of video evidence bothers me, also. As Michael has repeatedly demonstrated, still photos of magnified objects can be just about anything. With so many people making claims of objects emerging from their skin (some going so far as to claim these are sentient life forms, others claiming they’ve had to chase them around their homes with ‘zapper’s) it just seems that in this age of technology, someone would have caught it on video.
I understand Louise, I do. I was so freaked by what was happening, that I couldn’t get it together enough to “prove” it. I was just trying to figure out what I was seeing. I spent about three weeks in a vombified state of confusion and fear. Those would have been some good video-producing three weeks. Yea, I missed the boat for ya’ll. It was hard enough for me just trying to cope with what I was experiencing. If I start to swell again, I’ll be ready. In the meantime, I’ll have to hope that another sufferer can get it together better than I could.
ah
I’ve got a lot of years under my belt navigating the health care system. If I were bashful about it, among other things, my child could have probably ended up being on dialysis, someday, and I’d definitely have become a quadraplegic about a decade ago. It’s a miracle that I’m not, after several very extensive surgical procedures, within one, lasting 7 hours. It’s out of the question to think that anyone can entrust their health, and the health of their families, to anyone entirely. I have a lot of dealings with the health care system. Your mentioning my having had at least one negative experience, and TC’s having had one misdiagnosis, is not even a drop in the bucket. Giving up isn’t an option. If anyone is at that point, it’s time to be treated for depression.
Hmmm….I should take drugs to make me happy about the fact that my doctors don’t know what’s going on with me and my kids. I don’t think so, but thanks, again, for the concern.
ah
Sometimes it becomes necessary to deal with depression and anxiety with medications. I don’t suggest that a person use them if they aren’t necessary, or without the supervision of their doctor. But sometimes things in life that are beyond one’s control become overwhelming. Stress alone can cause serious headaches, and can upset one’s entire system.
# Aherah Says:
July 21st, 2006 at 12:42 pm
Hmmm….I should take drugs to make me happy about the fact that my doctors don’t know what’s going on with me and my kids. I don’t think so, but thanks, again, for the concern.
ah
“Ahhh”….and I thank you, for illustrating more of the problem, on this debunking morgellons’ blog.
“But sometimes things in life that are beyond one’s control become overwhelming.”
No doubt. I’ll take their little pills before I put the gun to my head, I promise.
I’m done.
ah
That makes about SIX times, now, that you have mentioned a gun, since I’ve run across you, lady. You NEED FUCKIN HELP!!!! Does your famiy know this???!!!!!
The National Suicide Prevention Lifeline’s mission is to provide immediate assistance to individuals in suicidal crisis by connecting them to the nearest available suicide prevention and mental health service provider through a toll-free telephone number: 1-800-273-TALK (8255). It is the only national suicide prevention and intervention telephone resource funded by the Federal Government. Find out more:
http://www.suicidepreventionlifeline.org/
Since you shared a letter you’d written to your new doctor, on lymebusters, not too long ago, and stated in it that you rank the word “crazy” alongside a “child molester”, Aherah, that proves that you also have very bad misconceptions concerning mental hygiene.
All that I meant to suggest is, that since you need treated for depression, it would balance your brain chemistry, and, as a result, that would enable you to be better equipped to deal with your other health matters in a more forthright manner.
Don’t get yourself all worked-up Smiles. It’s called a METAPHOR. I don’t even own a gun. My point is to say that I’m not so depressed that I need meds right now. When I get there (reaching for the “gun”), I’ll take ’em. Still, it’s not as if many a Morgie doesn’t feel this bleak or else there would be no need to post the national suicide hotline number on the MRF website. We are the CDC’s collateral damage.
At some point, you have to accept that we may both be intelligent women who just disagree about quite a few things. I’d appreciate it if you wouldn’t concern yourself with my “mental hygiene.” I’m hangin’ in just fine, but THANKS, again.
ah
You so full of shit you reek.
Your histrionics on a morgellons’ debunking site, instead of on a “support” message board, like lymebusters, sums things up.
Let look at comments from yesterday….
“In some cases, and I include myself in this bunch, what we get is a group of angry, frustrated, sick people who are learning to be helpless—learned helplessness. You say we’re “in love” with our disease. I say we just don’t see a way out anymore. I hate it. I hate it. I hate it. I hate it. I UNDERSTAND WHY ONE MIGHT CONSIDER SUICIDE! And I can’t bear any more humiliation or disappointment. I’m just damned, that’s all.”
You’re playin.
I’m cuttin’ and pastin’ because I don’t know where exactly ya’ll are at and where to start:
Some one lead me please to where the stage has been prepared for the flukes match to begin. I can’t seem to find it…I hope I’m not late. But I doubt that right!?! That match was meant just for me wasn’t it guys? Ok…I’m ready for you but once again…if you want a piece of me then you must no that I wont play if you don’t fight fare. No name slangin’ or I’ll forfeit the match. Name slangin’ is a last resort when you’re stuck in the corner of the ring isn’t it…the only way you know you can get your way out of that corner huh!?! Jimbo is probably from here just like PappaSmurf. What the hell do you guys want with me now? I can’t believe I’m going to give you what you want…I’ll give you another shot. Hurry up though, I’ve got stuff to do.
Carrie
Portland, Oregon
Michael, What are your thoughts on Prions?
Click for Diagnosis
Sorry about that last link. Try this one.
http://www.geocities.com/healthbase/parasitosis.html
I think some people are apparently seeing…
Morgellons Watch
Resources for Morgellons investigators.
And not looking past it to see…
Skeptical analysis and debunking
Tallcotton – I did read that link, what are you trying to say that I cleary have DOP. Yes, I do have a diagnosis of Chronic Ricketttsiosis Spotted Fever Group and have received the IV treatment for this, but my Morgellons Symptoms still continue.
I am not interested in giving my money to people for alternative treatment I can do this on my own.
Please clarify if you can – thank you.
Smileykins – I can see what you are saying, but what you must understand – I am just like everyone else in this boat, I just what my life back to normal – what on earth did I do so wrong to get this terrible thing. I have put good stuff in my body all my life, I can’t figure it out.
I don’t have a hidden agenda for fame or fortune I just want peace on earth like everyone else.
Abac,
That link was for Carrie, since she thinks she has flukes.
Tall Cotton
No Worries – thank you.
Michael – I can tell you what the fibers are that come out of my body:
The lovely black cardigan my sister bought me for my birthday.
My cats fur.
My hair.
The wig I wore when I had NO HAIR.
And every other environmental containment my body could possibly suck in.
Go Figure?!!!
To the Australian Government – I do hope that you will seriously consider compensation for me. Since this unknown disease has cost me my career, money, friends, family, endless pain and suffering, alienation, my credibility, the list is endless.
I am sick to death of my back pocket being sucked dry.
Michael – about those prions Hmmmm?
ABAC68, prions are an infectious agent. All part of nature’s rich pageant. What kind of thoughts were you looking for?
Basically just to confirm if these things are really real – especially when the only info on prions seems to be the internet and I get a bit lost in the local library these day. So that sums it up for – I am infectious as my doctor tells me. What to do – what to do???????????
Personal attacks, and personal counter-attacks, are not conducive to progress. Pointing out the failings of others, while often based on truth, and often seemingly justified, serves only to further polarize the discussion.
This is not a war, at least not from where I’m standing. I want to move forward using scientific principles to discover what is really going on. In the process, claims that people (including me) made might turn out to be unfounded. At that point we should simply note the error, and move on.
I don’t care about blame. Blame is pointless. There is no point in finger pointing and punishment unless the guilty party deliberately set out with malicious intent to hurt others.
Negativity is ultimately negative. Critique mercilessly, but do it for good.
Anyone care to shake my hand???!!!!
Michael, re: the 2005 990
Since it is still not available, I will assume that the MRF has filed for the first of two 90 day extensions they are permitted. The request for extension is also a public document and thus should show up on Guidestar very soon.
If they take advantage of all permitted extensions, it is possible that the 2005 Form 990 will not be filed until Nov 15, 2006.
Prions are in the dictionary, assuming it was published after 1990 or so. They are real, but unlikely to be the cause of your suffering. There are a lot of things besides prions, so you can’t just go by the fact that they are a rather interesting infectious agent that was only recently discovered. That really has no bearing on your case.
Main Entry: pri·on
Pronunciation: ‘prE-“än
Function: noun
Etymology: proteinaceous + infectious + 2-on
: a protein particle that lacks nucleic acid and has been implicated as the cause of various neurodegenerative diseases (as bovine spongiform encephalopathy and Creutzfeldt-Jakob disease)
Michael – I’m not interested in attacking anyone here. Have you taken in your head what I have been saying. We all want to get better and find out what the hell is going on. No hidden agenda here. I’m sick of being a damn guinea pig and yes I do deserve compensation and apologies left, right, centre, and upside down, because non of this is my DAMN FAULT!!!
What I have told you about the fibers is the god damn truth, if you are in a position to change this whole situation and get to the bottom of it please please please do it.
Peace to all.
Michael, again I am impressed at your patience and even-handedness when your comment areas erupt into flame wars. You do an excellent job at keeping your blog focused and on-topic.
JeezeLoiuse, interesting – but I suspect 2005 was not particulary high cash flow either. I really don’t think they are in it for the money. Still, it might provide a window into what is going on there.
Excuse me for being out of line. When someone has brought up the topic of suicide, particularly mentioning “a gun” each time, so many times, already, in the past, and in the last two days seemed to be considering it, on here, just to basically turn around and say that it was a joke, and that she’d appreciate my not being concerned about her state of mental hygiene….
well, I don’t find that something to joke about.
ABAC68, obviously being infected with something is not your fault. But what exactly is your responsibility in this matter? What should be expected of a reasonable person in your situation?
Michael, I will be interested in seeing what was so complicated in the 2005 accounting that it delayed a very simple filing, as well.
As for significant cash flow, I tend to agree with you.
I did notice that they’ve got no links to contributors sites from their “Sponsors” page. The $2500 donation from the Asthma and Respiratory Services group appears to be a very big deal. The “first corporate sponsor”, SeaChange (http://www.schange.com/) is not even in the healthcare field.
I would like to thank the Morgellons Research Foundation for there support. Without those people helping me and my doctor I would be dead by now.
I just want the TRUTH. The hurt has to stop. Territorial jealousy has to stop. Hidden agendas have to stop.
You don’t believe me? – jump on a plane come see me – I’ll give you the truth.
Smileykins, sometime people just use a reference to suicide as an indication of the severity of something. It’s not meant to be taken seriously, but nor is it a joke.
Different people have different sensitivities to the mentioning of controversial and emotional subjects like suicide. While I don’t advocate self-censorship to avoid every slight distress; we need to consider both the intent behind a statement, and, from the other side, the ways in which it might be taken, particularly in the specific context we now find ourselves.
I should also write with shorter sentences, we all have communication issues.
ABAC68, by any chance do you have video evidence of fibers emerging from your skin?
The Morgellons Research foundation may have helped you, but it has also hurt a lot of people, and it continues to do so. You may be very sick, and you may be in a lot of pain, but you DO NOT have Morgellons Disease. There is no such disease. It has not pathogen, prion or otherwise. Everyone needs to read up on how the Foundation got started to begin with. If I could legally shut them down and lock their doors, I would do so in a heartbeat. I would also shut down every message board for Morgellons believers. This madness has gone way too far.
Abac68, you had previously said that your doctor was treating you for morgellons. Now, you’ve stated… “Chronic Ricketttsiosis Spotted Fever Group and have received the IV treatment for this”.
But, you have “symptoms of morgellons”, is that, now, correct?
Tallcotton – I hear what you are saying, but Mary Leitao has NEVER put me in harms way. This lady has only ever helped me, after two years communication with this lady she really is my savour. I have not parted with any money – because I don’t have money to give to research foundations and I do know that is not expected of me. You are entitled to your own opinion and I accept that.
JeezeLouise – Videos, photos, you name it. The evidence in our home is too overwhelming. And NO I will not send you any photos or video information, that is why we have media and television, these people have been extremely good to us and I thank them for that.
Smileykins – YES – My doctor believes “Morgellons” is real and there is definitely an infectious agent involved. I am just quoting his words.
This is not “morgellons disease”…
http://www.emedicine.com/ped/topic2015.htm
Abac, I have yet to see any video evidence on any media. Do you happen to know when such evidence might be aired?
Smileykins – I don’t have the time to read that stuff. Does it mention that my body sucks in everything I come in contact with?
Jeezelouise: Are you telling me that all the media footage we have seen is also a delusion.
Don’t care what you call it. We have ourselves a real life crisis happening here. I am only trying to help.
By the way I call this unknown disease “CHARLIES”
Stands for:
Chastised
Hurt
Angry
Rejected
Laughed At
Ignored
Envious
SICK
I KEEP FIGHTING THE GOOD FIGHT!!!
Abac, I have seen broadcasts of still photos, but never actual video footage of fibers emerging from the skin. If such footage has aired anywhere, can you please refer me to it?
Not as yet, but it is coming.
Coming, where and when?
Are you saying that Morgellons is Rickettsiosis, or are you saying that you have Rickettsiosis and Morgellons. Are you taking Doxycycline?
Is it totally impossible to entertain the thought that the patient population that signed onto MRF’s web site, in the early days, before Mary Leitao concocted a list of combined symptoms that she got from having them fill out a health survey, are DOP, just as they had been diagnosed as being? Reading all that I do from the so-called victims of her “morgellons disease”, I see very few that don’t openly talk on line about the very symptoms of it. Consider how they all compare what they think are “specimens”, and think they are infested. If that isn’t DOP, what would anyone else like to call it? Oh, “morgellons disease”, maybe? 95%, lest anyone forget. If it’s possible that other people have wanted to claim it as what they have, since she expanded what “morgellons disease” is, from all the various illnesses and health conditions registered members had reported, I suppose they may not be DOP, if they never received such a diagnosis. Is it also too difficult to entertain the thought that Mary Leitao and all the members of MRF are DOP as well, or have some sort of delusional disorder?
Smileykins – I don’t mean to be hurtful, but I think it’s time for you to SUCK AN EGG!!
Tallcotton – I have Rickettsiosis YES and YES I have what we are calling Morgellons.
No DOP here thanks very much.
These are great diagnostic tools, for people who want to help themselves communicate more effectively with doctors during such time-limited office visits.
This is my favorite tool out of all…
Multiple Symptoms:
By selecting one or more symptoms from the box marked Symptoms you can see what diseases are shown to have all of the symptoms you have selected and what diseases list at least one of those symptoms.
http://symptoms.wrongdiagnosis.com/cosymptoms
Chronic Illness:
In the USA, more than 90 million people have a chronic illness, and the top 5 chronic illnesses (heart disease, cancer, stroke, COPD, and diabetes) together cause more than two-thirds of all deaths.
http://www.wrongdiagnosis.com/c/chronic/intro.htm
Symptoms Center:
Research information for over 850 different medical symptoms. Use the search tool or select a link from the conditions listed.
http://www.wrongdiagnosis.com/symptomcenter.htm
List of symptoms from A to Z
http://www.wrongdiagnosis.com/lists/symptoms.htm
Wrong Diagnosis Forum:
Discussion forum about medical conditions. Ask a question, answer a question, exchange ideas with others, or find people with similar medical conditions.
http://forums.wrongdiagnosis.com/index.php
Smileykins – Do you think I am on a steroid for the fun of it? Reality check time!!
Abac, if you use tea tree oil or Vicks or something else on your skin, does that cause the fibers to emerge?
Sarah Connor, I appreciate the oversight you are providing over on Lymebusters. One thing I’d like to see is some actual criticism of this site (Morgellons Watch). People often accuse it of being full of lies and inaccuracies, so I’d like to offer Jimbo and friends at WatchMorgellonsWatch the opportunity to point out any errors or omissions on this site.
I feel that by working together we might be able to eliminate some errors and misunderstandings.
http://lymebusters.proboards39.com/index.cgi?board=rash&action=display&thread=1153490038&page=1
Please relay complaints here, since I’ve been banned from reading Lymebusters.
Smileykins – you can “Google” search till your hearts content. You will NOT find what myself and my Aussie mates are suffering from. Thanks for trying.
Danggit, Michael, all this time I’ve been spying for you and you’ve not kicked me down a single dime in salary!
jeeze
Abac68…
# Michael Says:
July 21st, 2006 at 9:39 pm
ABAC68, obviously being infected with something is not your fault. But what exactly is your responsibility in this matter? What should be expected of a reasonable person in your situation?
I’d like to know that also, particularly, how come you are focusing on “morgellons disease” rather than Rickettsiosis? How much do you know about “it”?
“well, I don’t find that something to joke about.”
I didn’t say “joke”; I said “metaphor.” Read it again. But let’s not kid ourselves. Michael may turn out to be a decent person who doubts to his dying day unless the God of Science shows him otherwise. You, on the other hand, would love to see me do the deed. Did I tease you with my little metaphor? Get your hopes up? Sorry, I’m not that far gone yet. Jeeeze Smiles, can’t you just be nice? Pretend. If you want to have a discussion with me, you’ll have to be more civil. In any case, I really would appreciate it if you would keep your opinions of me to yourself, and I’ll do the same as I have been doing for the last couple of weeks. Just bite your tongue/fingers.
The reason why I share the things that I do is because it is easy to say the Morgies are this or that when you do not understand the process that brings them to this point. In my personal accounts of my experience with what I believe to be Morgellons, I am attempting to shed some light on how reasonable people become Morgies. When reasonable people are forced to live with a medical condition that greatly disrupts their quality of life, they want to be healed. When they run into a variety of brick walls to hinder their healing, they become mad. They especially become mad when those brick walls add to the enormous amount of stress (i.e. DOP) they already endure just by being ill. Throw a couple of kids into the mix and they become panicked. The Morgies are a very mad and panicked people forced to scrape together any kind of bizarre remedy they can find to attack an equally bizarre condition because nobody else will do it.
Maybe Morgellons is not real. Maybe whatever I am experiencing is due to entirely legitimate medical issues that have been overlooked. None of the issues it could be explain the fibers. I just can’t get passed that. I know what I’ve seen and it ain’t dust. Likewise, my mother, brother, husband, friend, and Dr. Wymore know this too. I’d like Michael a whole lot better if he could be employ his intellect in solving the “what is the fiber” riddle rather than wasting it (my opinion) on a debate over dusty lesions, desperate sick-people talk, and inadequate medical information. He wants proof, and I want answers.
ah
>>I just can’t get passed that.
The correct phrasing would be “I just can’t get past that”.
I knew you’d want to know. Glad to help.
Proof will give you answers, so let’s get the proof and we’ll all win!
Does Rickettsiosis cause a person to become a “Human Magnet”?. If I was to just have followed the guidelines set down by the Australian Health Department for the treatment of Rickettsiosis which is Doxycycline for 14 days I would be dead by now. I tried all of that. I had to find a Rickettsiosis specialist which I did.
If I send you a vile of blood would that help?
ah
should be .” quote after the period unless your a brit.
Goodnight!
aherah
Passive aggression can be so tedious.
I passed my “proof” into the appropriate hands long ago – STILL WAITING.
Okay, people are starting to fight over spelling and punctuation. Time for bed. 🙂
Sweet dreams, Michael 😉
Goodnight All!!
Abac, if you are still waiting, then perhaps you did not pass your “proof” into appropriate hands at all.
Oh for goodness sake you need to SUCK AN EGG ALSO!!
I’d rather watch a video. Got any?
JeeezeLouise – GO BLOW!!!!!
I’ll take that as a no, thanks.
Can’t believe no one caught my goof. Your = you are.
I don’t think anyone really cares about insignificant spelling / grammar errors except you, Aherah. My earlier post was merely to demonstrate how infuriating passive/aggressives can be.
I understand Louise. You failed to notice that grammar never was the issue; I merely demonstrated that Michael isn’t as open to correcting his errors as he would have us believe. He’ll hold on tight to his “prose” “theories” “opinions” no matter what. It’s a type of hardheadedness that doesn’t welcome self-correction. I see it all over this blog despite what he claims. I’m sorry that I infuriate you Louise. You’ve not had that affect on me.
ah
“I’d rather watch a video. Got any?”
You call ME passive aggressive? I’m sure you could find plently of videos this time of night with lots and lots of fibers–go to Blockbuster for that though.
Nighty-night
Passive-aggressive
Michael has been quite patient.
I wonder if Pumpkin might be willing to videotape your next fibers-in-the-teaspoon event?
Aherah,
This is not some dumb English class. I don’t think Michael is looking for trivial mistakes in grammar. Do you find any error in his message? No, you don’t! Where else, besides this blog, do you find a logical explanation for the fibers found within the lesions? Oh, you don’t have lesions. Well, if the truth were known, you and your family are probably delusional. Tablespoons of blue fuzz, my ass!! You’re a hypochondriac, among other things.
Tall Cotton
My mind was only temporarily on-the-blink resulting from the cumulative effects of heat exhaustion when I’d had a little bout with DOP. What health conditions cause it, in each person, makes a whole lot of difference. But I never was diagnosed with it. When I forced myself into living, when death was knocking at my door, it subsided. I’d have turned into a morgie back then too, probably, if I’d been looking for support. Thank God I wasn’t. I’m glad you sought a Rickettsiosis specialist, abac68. It sounds like you had a close call. I hope you’ve educated yourself in it enough to know that delirium is associated with it.
Aherah Says to Smileykins:
“If you want to have a discussion with me, you’ll have to be more civil. In any case, I really would appreciate it if you would keep your opinions of me to yourself, and I’ll do the same as I have been doing for the last couple of weeks.”
Smileykins Says:
I’ve misunderstood your intentions, again. Considering the comments you’d made to Michael, including this…
“See, I’m damned. (Smiles and TC would agree).”
…and taking into consideration, the fact that when I’d ignored you before, you had tricked me into talking to you, posing as “Pumpkin”, I was being civil in speaking with you. The message I was receiving was that you needed me to. I’d hoped that it may have been a positive thing when you’d quoted Confucious, but I misinterpretted it, and prematurely assumed you were ready to take charge of a few things now.
It has always appeared that direction has been fairly hard to come by for you. You had just previously come clean about your own prior history of abusing amphetamines when you were in high school, as well as telling us a lot more of your background. I’d thought you were possibly trying to work through some issues in doing so. The next thing I saw was a pretty extreme display of emotion. I’ve been exposed to suicidal threats, and attempts, a few times, so maybe it’s more of a serious matter to me.
No more passing of words between us, and no more putting words into my mouth, to others, of what you think I’m thinking of you.
The lovely black cardigan my sister bought me for my birthday.
My cats fur.
My hair.
The wig I wore when I had NO HAIR.
So, to my understanding, instead of fibers growing out ofyour body, your body is sucking them in and then spitting them back out again?
Blue Leg Dermatitis
Here’s a nice article, since it goes over a number of causes of neurotic excoriations, of which DOP is just one.
http://www.aafp.org/afp/20011215/1981.html
Of course, not all Morgellons believers have Neurotic Excoriations. But I feel fairly sure that some do.
ohhhhh you guys have been bad while I was away! I’m going to jump over to the new blog to see what the topic today is……but I sure hate to have missed this one last night……b/c I have a heeluva lot to say on these last 20 or post above! check you guys later-
London
oohhh crap, now I know I’m delusional because I just witnessed a illusion.
Could’ve sworn that there was a new blog listed at the top earlier. Oh, good….I like this one just fine!!!!!
I have a gun. But it’s to shoot the F-ers that gave me my disease when I catch up with them…..OR….when they knock on my door to silence me as one of the posters on Lymebusters PM’d me!!!! Let them knock,kcock !
Bienvenidos!!!! Yes indeed!
Now, you guys must not think I’m too bright. And your right; to a point..hah! But the days that I do not think I’m delusional, I have clarity of thought. And can research pretty good too…..even to the point of busting fake usernames and discovering the science behind the cloning of our disease and how it is molecular and biotechnically made with the finest
designer bacteria on the damn planet!
Michael, you really want to help us find and answer? That’s good news!
Stick with me; I can give you an earfull- Hey, maybe you are doing just that, This is good to know.
****************************************
Dear ABAC68, I would love to hear more about your illness. I said that this was ricksettia in nature back in May…….and when I posted that; whew, boy the fako usernames at slimebuster came out of th woodwork then…….of course you can’t view my post about that b/c they deleted them when they banned me.
ABAC68, how long have you known you had the spotted fever? 2 years, 10 years? I am sorry if you already stated that, but I can’t find it and would love to know and would love to know the test you had administered to find out that diagnosis.
And Tall Cotton,
You asked her (ABAC68) if she thought that the spotted fever was in addition to Morgellons or was she saying that it was Morgellons.
I would love to answer that one for you (my opinion; want it?)
and yes, when I get depresed which I’m not; I’m f-ing pissed, I will take something for it…..but it sure won’t be a prescription you get at the Doctors office.
and once upon a time there was this thing that they did not want us to find out anything about…..it was called:
A mexiacan Bean Beetle
And if “they” are smart; they will call our illness “MELLIOIDOSIS” B/C IT IS SUCH A BROAD TERM…..that then they can put any disease under the sun in that category!!!
The other name for it is Whitmores Disease or Bacillus Whitmore
it includes a wide area of diseases: from getting it from dust or contaminated water particles to bites from insects or to your stupid lil snails carrie….it includes those too.
But what they really should call it is the truth! And you know what that is?
I do.
Hey looks what’s coming up August 4-10th……
Fifth International Symbiosis Society Congress, 2006
The players in a mutualistic symbiosis: insects, bacteria, viruses, and virulence genes.
Let me summarize: the units of natural selection are DNA, sometimes RNA elements, by no means neatly packaged in discrete organisms. They all share the entire biosphere. The survival of the human species is not a preordained evolutionary program. Abundant sources of genetic variation exist for viruses to learn new tricks, not necessarily confined to what happens routinely or even frequently. The first inklings that genetic recombination could occur at all in bacteria, in F+ E. coli, were at a rate of 10-7, or one in ten million, and one had to look very hard to have any evidence that they existed at all. And some bamboo plants flower only once per century and the careless observer might think that they never recombine. Some generalizations to the limits of genetic change in viruses are equally hasty.
shall I say more?
London, what has that got to do with your physical and mental problems? Is there a connection? How do you know if there is a connection.
There are too many comments on this post, and I think the conversation is getting a little off track
So, I’ve started a new post, hopefully we can have some constructive discussion there:
http://morgellonswatch.wordpress.com/
okay, I will go there then, but top answer your question……what’s that got to do with my illness……
i’d say a heeuva lot! They released this thing in those 3 states that have the highest pop. of Delusional people with bites, kike me! I’m from texas…and Linda, if you see this….In 993 they released 40,000 of them in texas alone!
sorry, that was 1993
Also the States with the highest population of people with fingers. Yet you don’t go blaming your fingers on Big Ag.
Sure, you want to blame something, but come on London, be reasonable.
I suggested a helmet a short while back. Time for a lap belt, Michael.
My doctor only knows one thing for sure, he has seen fibers growing under my intact skin. He does not know if this is a disease, in fact, he refuses to call it a disease. He suspects all of the other symptoms attributed to Morgellons are psychosomatic in nature. He observes that when I am on Doxycycline, he can not see fibers all over me. He also observes that when I go off of it, he can see them everywhere he looks on me. Therefore, I am staying on it and doing well. He suspects my lesions are excoriations (self-induced via scratching and picking). This may be the case, the fibers are extremely irritating under the skin and pulling them out relieves the irritation. However, I try very best not to touch my skin. In fact, I wear band-aids over each of my finger tips to prevent my self from scratching unconsciously and while sleeping. I trust my doctor. He is very rational.
Smileykins posted information on this blog about a known skin disorder that produces red and blue fiber. What if these fibers are part of an inflammatory process that is reduced by the doxycyclene? Why do you say that the fibers are “growing”? Isn’t that jumping to a conclusion?
What skin disorder produces red and blue fiber? “growing” was my doctor’s word. He said this because: he found some fibers under my unbroken skin on my thumb; he made notes about what it looked like; carefully examined the area around the twisted bunch of fibers; then he taped up my whole thumb securely with many layers; had me return a couple of days later; removed the tape; examined the area and found several more fibers under the skin, in the area around the initial bunch, which was also still there, but appeared to be bigger. So, unless the fibers penetrated the many layers of tape, and my skin, without leaving a puncture wound, my doctor concluded that the fibers certainly appeared to be growing in my skin.
One more thing… the examining of my thumb was done with the assistance of a 40x microscope lens.
http://dermatology.cdlib.org/DOJvol8num2/NYUcases/2/2.html
My doctor says collagen fibers are about 1000 times smaller than my fibers.
Collagen fibers can be up to 20 microns in diameter (hair is 10 to 100 microns) Still, I’ve not seen any evidence that really suggests collagen over normal environmental fibers.
It sounds like you’re happy with your doctor Greta. Is he a dermatologist, and is he who sent some of your fibers off for analysis? What is your clinical picture, other than the fibers that your doctor thinks you’re growing in your skin? Do you have sun-damage? You’ve said he is treating you back and forth with doxycycline. How long will that continue, before looking for the cause of your having a recurrent infection, or do you know what condition you have that is causing it?
The thing is, Michael, it seems to me, that Wymore appears to be pretending to be a dumbass. I mean, oooh, he is so puzzled that the fibers aren’t environmental, says he. That just doesn’t set right in my brain, and it’s why I feel a dermatology professor ought to knock him upside the head.
He’s a freakin’ PhD in Physiology, right?
My doctor is a psychaitrist – a medical doctor. He has been for over seven years. Before that, he was a family physician for 20 years. Yes, he is the one who sent my fibers for analysis. He is the one who will be paying for the University to test the fibers with an x-ray spectrometer, a scanning electron microscope, and a transmission electron microscope.
My clinical picture? I have elevated levels of Tumor Necrosis Factor alpha (TNFa). Nothing else is abnormal. I even tested negative for lyme antibodies. Before they Doxy, I had lesions, brain fog, creepy-crawlies, and sleep problems, but that all ended with the Doxy.
I have no sun damage. Not much sun up here in Vermont. I am 27 years old and otherwise very healthy.
My doc only let me stop the Doxy once, after two months of taking it. The fibers came back so he put me back on it and wants me to stay on it for at least one year. He is trying to figure out the cause and a cure for my condition. He is doing this by his own methods, as he has absolutely no confidence in the Morgellons Research Foundation, based on what work they have and have not done.
By the way, my doc has dot taken one penny from me, yet he spends a TON of time with me. And a ton of time on his own working on this.
The test on the fibers will take place within the next couple of weeks.
Smileykins, why did you say I have a recurrent infection?
I’m sorry. I misunderstood, Greta. Since I did, then I see that it isn’t a recurring infection. If he has observed that when you’re on doxycycline he can’t see fibers all over you, but that when you go off of it, he can see them everywhere on you, it’s that you shouldn’t have gone off of it yet. So, now you’re back on it, and that’s great. It sounds like you are blessed to have gotten such a good doctor.
However, you’d said that you lacked an inflammatory reaction to the fibers in your skin. Having the tumor necrosis factor is evidence of inflammation, though. Cellular stressors such as ultra-violet irradiation (which is the reason I’d asked about that, because you’d looked tan in your photo and appeared to be basking in the sun, so I wondered), chemical irritants, or a challenge to the immune system in an otherwise healthy person induces the production and release of cytokines, such as tumor necrosis factor alpha, which are powerful regulators of tissue homeostasis. TNFa, is an important mediator of inflammation in the skin and mucosa, and often represents the first physiological response to such noxious stimuli. TNFa not only acts systemically to promote inflammation, but also locally at the site of the stimulus to modulate cell growth and survival. It has been demonstrated previously that epithelial cells undergo growth arrest and differentiation in the presence of TNFa. However, the mechanism of the response is not well understood.
So, if you haven’t got any other illnesses, I mean, for instance, if you have no other symptoms, and have no need for tests like a liver panel, lipid profile, blood glucose tolerance test, thyroid function, etc., then it sounds like your doctor is serving you extremely well, and I am very happy for you, too, and wish you luck at solving the problem.
Of course, your doctor SHOULDN’T have any confidence in the MRF, Greta!! Whatever you have, isn’t the same thing that everyone else who thinks they have “morgellons diesease” has. Everyone has different reasons for what’s going on with them, causing them to see similarities that are unfounded.
I do not have any local inflamatory response to the fibers. If the were fiberglass, I would have a local inflamatory response to the forgien bodies.
My TNFa levels were elevated in March and are still elevated today. If you know anything about Vermont, you know that we have almost no sun during the winter months. My photo was taken recently, just after I went on vacation.
I know a little about Vermont, but I know a little bit about the effects of sun on skin, too. I’d merely wondered if sun-damage had been mentioned by your doctor. I apologize if my being curious was offensive. Someone else who thinks that they have “morgellons disease”, was told by their dermatologist, when this person took their own black light to their appointment, to show that they had fibers on, and in, their skin, that what they were seeing was the effects of sun-damage. Naturally, this person didn’t believe their doctor, nor any of the other ones, obviously, that they’ve been to. To this day, though, far too many people still underestimate the seriousness of unprotected sun exposure. I’m glad that isn’t the case for you.
i was not offended.
My doctor tells me not to look at my skin with a black light, because uv light damages the skin and can cause cancer.
Well, yes, a lot of it can, just like sunlight. But dermatologists use UV light all the time to examine skin. Fluorescent UV tubes produce UVA which is not as dangerous as UVB. A brief examination with a small UV tube is not going to hurt you at all.
This
http://www.epartyworld.com/small-black-light-flash-light.html
is a lot safer than:
http://www.sunpowersource.com/wolff-16-tanning-bed.php?item_id=3
which is a lot safer than this:
http://www.noaanews.noaa.gov/stories2005/images/sun-soho011905-1919z.jpg
Greta, I believe you misunderstood me. This person was using the hand held black light (as instructed by Mary Leitao, to purchase), to show their dermatologist that they have an abundance of fibers in, and on, their skin. They have those fibers, that they were showing to their doctor, due to the cumulative effects of sun exposure.
I think most people when looking at their skin with UV light will just find normal clothing fibers, rather than observing sun damage.
Sun damage under UV does not really look like fibers to me, although I guess you could imagine it as bundles of fibers under the skin.
Check out this site, it has close up photos of mild and severe sun damage, and skin cancer. Click on the photos for full-sized images.
http://www.atlantacamera.com/Sun%20Damage.html
Smileykins, I understood you.
Michael, thanks for the explaination. I did not think a brief examination would hurt. My doc just says any amount of UV exposure should be avoided, even if it is just to examine the skin.
Tanning beds may be more harmful than the sun.
http://www.ftc.gov/bcp/conline/pubs/health/indootan.htm
Yes they may, and lack of UV can promote skin cancer. But I think we are getting a little off-topic here.
What’s the evidence that says there is a new disease that makes fibers emerge from your skin?
Whee! We sure have. Sorry, I was only repeating what the person had written about their experience upon showing their dermo their fiber-filled skin with the black light. They hadn’t been too thrilled with the doctor, like they were lying to them, so maybe they were seeing something that wasn’t even there.
On a lighter note, all this black light talk reminds me of one of my favorite pieces of evidence that Morgellons is a new disease spread by fluorsecent fibers:
http://morgellonswatch.wordpress.com/2006/04/18/fibers-are-everywhere-part-2/
TC and I have marvelled over this too, Michael. All is not well with such people.
I mean, we have marvelled over THEIR fascination, and how they think it’s proving something. Hehe, “not” that we did the same thing with a black light!! It’s very odd.
I have been a nurse and as well a nurse educator for 40 years. I have this disorder and there is no mistake about it. I have been discredited and maligned by more physicians than I can count with not one with one iota of scientific inquiry in them. I have no strength left to defend myself agaisnt some here that feel the need to expend an inordinate amount of energy debunking. Why? What’s in it for you? If you are not afflicted then why bother? There are so many of us now that the numbers alone substantiate that something very “outside of the box” is going on here. One would think there would be a scientific medical community curious at the very least. This is not the case. I have no idea why, other than the influence of money (grant) and politics of medicine in America today; that includes the research community with deep pockets. There’s no money in finding out what’s ailing this population of sufferers….period. It is much easier to call us crazy and run the other way. Until a group of us drop dead on the steps of CDC/NIH my hunch is that any discovery will be an uphill battle….it takes money. I know what I see under the microscope and as well my tissues. I am sane, rational and afflicted.
Who are you debunkers anyway? What’s in it for you to expend this amount of energy in this matter?
Alison Brundage, R.N., B.S.N.
Don’t allow yourself to be concerned about us. Please, try and relax. and let the scientist at OSU and the CDC task force do their jobs. All your answers will be coming soon, now. Being a nurse, you ought to remember that it isn’t an MD’s job to act outside of their profession, and that it’s an unhealthy belief whenever patients firmly expect that they should. I’m sorry you’re not well.