There’s a key pararagraph in Brigid Schulte’s excellent Washington Post article on Morgellons:
At the Mayo Clinic in Rochester, Minn., doctors are beginning to discover how imprecise a diagnosis of “delusions of parasitosis” can be. In the past five years, 175 people have been admitted to the clinic with that diagnosis. After thorough evaluations, however, with doctors taking the time to search for underlying problems, only half of those patients left the clinic with that diagnosis intact. Doctors found a very real cause of the itching in the other half.
It’s key both because it illustrates the false dichotomy of “disease or delusion” that the media and the MRF have forced upon Morgellons, and because it offers a way out of this dead end debate.
Let’s say somebody itches. That’s all, they just itch, but really badly, so it’s a problem. They go to the doctor, and the doctor does a lot of tests to try to find out why they are itching. They do all kinds of tests, and discuss possible environmental causes with the patient, they keep at this for a long time but they can’t find out why the patient is itching.
Is the patient delusional?
No. Clearly not. They are just itching, and they can’t find out why. Now, this obviously would be a horrible situation to be in. Painful itching, and no solution in sight. Horrible. But just because the doctor can’t find a cause for their itching, it does not mean they are delusional.
Now consider the 175 people mentioned above. They were diagnosed with delusions of parasitosis, but after doctors looked for underlying problems, only half of them retained that diagnosis. Consider what this means.
For someone to be diagnosed with delusions of parasitosis (DOP), they have to have an unshakable false belief that they are infested with parasites. Now our hypothetical itching patient does not have this belief, they just itch, so they would not be diagnosed as delusional, since they hold no strange beliefs about their itching. No, to have itching and be diagnosed with DOP, you need TWO things:
- Itching
- Delusions of Parasitosis
Of course, one cause of itching is scratching (the itch-scratch-itch cycle), and one cause of scratching is DOP. But that’s just one cause. Just because someone has DOP does not mean that their itching is caused by their DOP. There are hundreds of causes of itching. Lots of non-delusional people have itching for which no cause can be found.
DOP, on the other hand, can certainly be caused by itching. It’s called secondary organic DOP.
Now, of the Mayo’s 175 people, 88 of them had a cause found for their itching, presumably this was addressed, and their itching was reduced (or at least explained), and so those people saw conclusively why they were itching in the first place, and were either cured of it, or no longer had false beliefs about it. Were they misdiagnosed? Not if they started out with fixed false beliefs about the cause of their itching. They were not misdiagnosed, they were cured.
Itching is not a delusion. Itching is a physical sensation. Formication is a physical sensation. A delusion is a fixed false belief. Saying someone is delusional does not in any way invalidate their itching. They still itch. It still could be caused by any of hundreds of illnesses, physical conditions or environmental factors. The fact that they hold some odd beliefs about it does not mean they don’t actually itch.
So, no, there is no evidence that Morgellons is a distinct disease, and no, the fibers are nothing to do with anything. But just because someone thinks they have Morgellons does not automatically mean they are crazy. They itch, they suffer from formication, they scratch. In many cases there are probably reasons behind this besides “delusions”.
Michael —
Your point is well taken. But I think its a mistake to conflate what physicians refer to as “Pruritis of Unknown Origin” with self-described Morgellons patients.
Here’s the difference: The former group comes to the physician asking why they’re itching, the latter comes in with an unshakable conviction regarding the cause.
I have no doubt that many Morgies start out with a conventional dermatologic diagnosis — ie atopic eczema or psoriasis. But, then something happens. For reasons that nobody understands they become convinced that their symptoms are caused by an infestation. Everything else in their life becomes subjugated this belief.
Its this unshakable belief that is the unique feature of Morgellons.
I’m not conflating them. I’m saying they are separate. Morgellons patients have “Pruritis of Unknown Origin” AND they have an unusual belief about its origin.
Just because someone has a fixed false belief regarding the origin of their itching does not necessarily make their itching imaginary.
The problem here is that there is a HUGE implication that if the patient is delusional, then their problems are “all in their head”. Even if their symptoms are entirely psychogenic (possible, but unlikely in most cases, given their frequent co-morbidity and general ill-health), that’s not “all in their head”.
Yes, delusions are a huge part of the problem. But it’s not the either/or dichotomy that the MRF have foisted upon the media.
Once again your last paragraph is from a peson who has never met a patient with the disease and refuses to actually meet with someone who has it. Again it is written by a person who has never put his or her eye up to a microscope and observed the fibers–or even seen them. What an ego to say you are an expert about something you have never seen. Delusional–yes you are.
Don’t you ever get sick of your own ego’s false concept of being an expert about something you have never seen or know anything about?
How do you nto laugh out loud when you look in the mirror and realize you are selling your soul for a paycheck and that you look so very stupid for talking about something you know nothing about.
I have asked you to meet with me so you can see what this disease looks like up close and personal. If you believe it is not a disese nor is it contagious–why are you chicken to meet with me in a pubic place or even a doctors office or even a lawyers office? Cus you are BS–you are working for those tyring to debunk something that the government has allowed to get out of control and you are trying to put out the fire with this BS site. Otherwise take me up on my offer and come see someone tht has this and come see for yourself.
You have even turned down Randy Wymores offer–so why don’t you just close this BS of a site down and go on with your life? Cuz you get paid to be here—that is why. You have NO OTHER interest in this site otherwise–you don’t have this–so why take so much time telling those that do, that they don’t. Cuz you need to cover it all up
What a joke this site has become to most of us who know the truth-yet you still continue to balh blah blah about something you have never seen. Now that is delusional!
Keep on balh blah-ing–you only serve to unify those who know the truth–and what I human mistake with a unrealized outcome it is–the many jokes are on you.
My theory — and I do understand its nothing more than that — is that Morgellons IS a real condtion. And it has a (yet to be understood) biophysical cause.
I think that Morgellons will ultimately be found to be a definable central nervous system problem — akin to bipolar affective disorder or migraine. Bipolar disorder has been linked to a specific chromosomal abnormality that leads to specific neural transmission problems in specific “psychiatric” problems.
One of the barriers to honest discussion about this topic is that “delusion” is such a derogatory term — implying that the condition is some sort of character flaw or volitional.
Its my belief — again just a theory on an internet message board — that this sort of classic delusional thinking will eventually be linked conclusively to a specific abnormality of neural transmission in the brain. And when that occurs, truly successful treatment will be possible. Current approaches using Seroquel and the like are sort of like treating the fever of a pneumonia with Tylenol.
Note to Randy — as it turns out I actually DO have a very close family member with a very similar problem (though not Morgellons, technically speaking) so please do not lecture me on my personal familiarity with such things.
I would go one further. You can be diagnosed with DP if you have even THREE things: 1) itching 2) DP 3) an actual medical condition.
Having an actual medical condition does not preclude one from having DP.
One may have, say, pica pica, as I did a year and a half ago after snorkeling in Costa Maya. When I had pica pica, I still could have believed that the dermatologist lied to me and that the painful, keep-you-awake-at-night itchy rash was actually caused by a secret government-manufactured parasite placed on my skin at night.
I’m a family physician who also specializes in public health. This has come to my attention only because a family doc consulted me on this. From my limited research on the net, I can tell that patients suffer greatly from this. However, most of the anti-Morgellons people all agree on one thing–that the patient is suffering from something. Something psychiatric. Now I’m not an expert on Morgellons and I won’t pretend to be, but it’s entirely possible that physical symptoms can have something psychiatric as an underlying cause. I have no doubt that Morgellons people have itching and fatigue, etc. But it is also entirely possible that the underlying cause is psychiatric. Could it also have an organic cause? Sure. But until we find out more, we can’t say for sure. So I suggest both sides should keep an open mind.
Cantor, I totally agree with you. Itching can have a psychiatric cause. Somatic itching – heck I get it when I see a spider.
The thing is, I don’t think people should be say “Morgellons is this” or “Morgellons is that”. Everyone seems to have their own theory as to what “it” “is”, when I feel the true state of affairs is better summed up by “there is no it”. There is no “Morgellons” – there are a lot of different things going on.
Asking “could it also have an organic cause” begs the question: “could what have an organic cause”. Is there a case definition? I just don’t think “Morgellons” is well defined enough for you to ask what causes “it”.
Sorry to burst the bubble of those that have no idea what they are talking about physician or not. This has nothing to do with psychiatric problems –those problems are the end result of having a condition that is ignored and which people will not take the time to actually look at it and label something they no nothing about– without any true knowledge. For shame on all of you.
I once again, will go see anyone or have them come see me that would like to see the fibers close up and personal and talk with someone who has not mental problems. Sights like this one si what makeus all crazy and you should all be ashamed at picking on physically sick and weak people.
Many skin conditions are blamed on nerves if one can not find a physical reason for what they are looking at . This is an easy way out for doctors who do not want to say they don’t know. It is an excuse not to look further and to pass the buck and that is exactly what has been done. For shame on the medical profession.
Anyone with a brain in their head and an IQ or more than 118, if they saw a person that actually has this, that person could show them the things that we all have in common and there would be no way in the universe that what any of you are saying would hold water. That is a fact.
Yes many skin condition are caused by nerves and the lesions follow nerve lines and they also follow hair follicles. But it is a result and not the cause.
There are none so blind as those that will not see.
And I do believe that although you all say that you know this and that or have relatives that have this–I honestly do not believe a word you are saying if you have the daignosis you are talking about.
Again, I challenge you to see a real persn that has this.
If you actually knew anyone with this you could NEVER say what you are saying so it IS obvious to me that you are not telling the truth.
I am caling your bluff. If you want to truly be an expert I invite you to meet with me and bring your hand held Radio Shack 100X microscopes.
Once you have met with a person that has this and your mind is open and not closed by your work ethic, which is an oxymoron, then you will be able to talk out of your mouth and not the other end.
I do not do drugs, smoke anything at all or drink. I have a clear mental health ticket and a rahter high IQ. I work two jobs and am writing a book. I also do Yoga and work out on the tredmill for 30 minutes a day. I have no nerve-type , bi-polar-chemical mental imbalance. So please–enough with the arm chair diagnosis.
Find a person that has not substance abuse problems and is not on any psychiatric meds and has this–then open your mouths and speak–until then–please stop making false accusations that you have no right to do since you ahve no idea about the truth.
For the record, if you never had a disease that is so horrible as this one, which disfigures you for life, scars you for life, causes such fatigue that you end up losing your job and has elements in it that are so unusual that even you can not believe what you see–you too would find it very difficult not to crack up . Add that with this horrible site and those of you that claim you think you know when you have never ever seen a person with this.
This conundrum would hurt the soul and ego and mental state of any normal person. That is what you are seeing when you label a mental condition.The result of not being listened to or believed. That is a sin and the medical community along with the CDC and most likely Kiaser will be responsible for it and if I can do anything about it–will search till I drop to find a way to make them liable.
Thank you
randy
434-974-7128
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Randy,
Putting aside Morgellons for a moment —
Do you acknowledge that there is such a thing as delusional thinking? — again putting aside Morgellons.
Taking as an example a person who states that the FBI is tracking their movements. Even when faced with overwhelming evidence to the contrary, an individual with this delusion will always find some reason to persist in their belief. It is literally impossible to talk them out of it because (obviously) they do not have self-awareness of the problem. If we cannot agree that such situations exist, then further discussion is not really possible.
If you do acknowledge that these situations DO exist, then you would have to admit that it is AT LEAST conceivable that some subset of patients with Morgellons MIGHT have a delusional belief about the nature of the problem. And therein lies the problem — its basically an epistemological dead end. For the subset suffering from a delusion (and I’m not implying that’s everybody) the lack of self-awareness makes rational discourse an impossibility.
In my view, ‘delusion’ means having hallucinations or believing that things nobody else can detect are influencing oneself. But to me ‘Morgellons’ looks more like an innocent but mistaken causal theory. In short:
1. I have terrible itching.
2. I have open sores.
3. I found fibers in my sores.
4. Ergo: the fibers are the cause.
That’s not delusional thinking, it’s a causal hypothesis based on entities everyone can observe. Now I believe it’s the wrong hypothesis based on the analyses of Michael posted at this site. And many people can cling to bad theories, but being stubborn also isn’t delusional. And there’s also a difference between not being very bright and being delusional, and I’m not saying anyone is not very bright.
I certainly think that a lot of people that think they might have “Morgellons” are simply mistaken, exactly as you describe. However it’s undeniable that a potion of those people go a bit beyond that, and do indeed have hallucinations, and fixed false beliefs. The proportions are unclear – it may be that the people with the most fixed beliefs are the ones to voice those beliefs the loudest.
Meme/Michael–
Yes, these are valid points. Undoubtedly, those posting on many of the better known Morgellons message boards represent a highly skewed sample of the population. There are likely a large number of patients with an un (mis) diagnosed skin condition that is unresponsive to the treatment offered by their MD. These folks are the group (see my post above) who present to a specialist asking for help, asking for an explanation. They may have heard of Morgellons, and may have spotted fibers. But presented with compelling evidence that the fibers are nothing but strands of textile, they do not persist in believing that the fibers are part of the problem.
I think the group I have just described, however, differs so fundamentally from the folks who frequent the Morgie message boards, that the two groups cannot be said to suffer from the same disorder.
You mean one group is delusional, and the other isn’t? I don’t think anyone would substantively disagree with that. (Note to patients: being delusional does not mean you are not physically ill as well).
It will be interesting to see the numbers the CDC comes up with. The MRF claims 10,000 “families” (which are actually just individuals, not families). But those are just people who filled in their registration form – which does not even require that you think you have “Morgellons”.
The Kaiser guy said they though there would be around 500 patients in their study. I’m presuming this was based on interpolating 10,000 from the general population to Kaiser’s NoCal patient base. My feeling is that they will have a hard time finding patients to fit their study.
In any aspect of life there can be delusional thinking. As an example, doctors who see what you have and say you have nothing. But this board is to discuss a certain disease that does exist and all that this board has done is state that the disease does not exist when no one on this board has taken up my challenge to see a real person that actually has the disease. That is my point.
Anyone can be delusional. Kaiser said that a woman with West Nile Virus, proved by a blood test was delusional. Many people have died at the hands of Kaiser doctors because they are instructed to not believe the patient and to label them delusional to save them money.
This disease in some people causes mental problems but that is the result and not the cause and the longer they are ignored the sicker they become. That is the fault of our medical and insurance system.
This disease is real–it is being ignored–people like those on this site claim it is not real when they have not got a clue and gave not seen anyone with this disease and have ignored offers to be witness to someone that has it–and doctors are diagnosing people as delusional without ever going through the proper proceedures in the medical book to evaluate the DOP diagnosis. What is that about?
Those are the facts. They are the truth. And what is being done to those who are contagious and are suffering is a crime and someone should be held liable.
Randy
Randy, we’ve gone over this before.
What would I see that your doctors could not?
What would I see that you cannot photograph?
I’m not saying you’re not ill. I’ve no idea what is wrong with you. This site is not about your illness. It’s about a mistaken belief that there is evidence of a new disease, and a mistaken belief that fibers are part of a disease.
Whatever this morgellons thing is, I do hope someone finds a cure for it. Clearly these people are suffering from something. I do know what it is like to have horrendous itching with no sign of what might be causing it. Many years ago I had horrible creepy crawly itchy sensations on my legs and could stop scratching. Caused horrible sores on myself, with little tube-like holes inside. It was awful, I was frightened, and nothing relived the itching. After a couple months of hoping it would just go away, I finally went to a doctor, who told me it might be chiggers burrowing under my skin and laying eggs, and to use a bug bomb in every room of my house. That worked like a charm, and the itching miraculously stopped and the wounds healed. Never had any fibers, so I can’t relate to that part, but the itching can be maddening.
So, whether it is physical, psychological, or both, this problem needs to be solved. There are lots of real conditions that barely existed 20 years ago that are now quite prevalent, so I can’t discount anything. Good luck.
lilone, thanks for your story – it illustrates another of the many ways that someone could end up with symptoms that might be described as “Morgellons”. There are many conditions and situations that could result in these symptoms, and people need to be treated on an individual basis.
Meme,
You said “In my view, ‘delusion’ means having hallucinations or believing that things nobody else can detect are influencing oneself. But to me ‘Morgellons’ looks more like an innocent but mistaken causal theory. ”
I disagree with your view of what a delusion is. A delusion is a false, unshakable belief. It’s not a hallucination, the perception of a stimulus in the absence of that stimulus. They are entirely different. And I don’t think this Morgellons is an innocent mistake. If I had been to forty doctors who all told me I had eczema when I believed I was suffering from Morgellons, or even if I had been to just FIVE doctors, I might start to ask myself “maybe I’m wrong.” But somehow those who say they have Morgellons unshakably believe that they have a disease, and that would raise a red flag for a delusion.
sarahbionedunn,
You say: “I disagree with your view of what a delusion is. A delusion is a false, unshakable belief. It’s not a hallucination, the perception of a stimulus in the absence of that stimulus. They are entirely different.”
But there is no difference. Determining if a belief about the world is ‘false’ requires perception of the world. Truth values for propositions are derived from semantics, which involves establishing a mapping between terms in a language and the external world by way of percepts. So ‘false beliefs’ about the world are just those beliefs that lack a mapping from terms describing a belief to objects in the world. In short, what I said is already packed up in the term ‘false beliefs’ that you cite, and so citing it does not present an alternative interpretation of ‘delusion’.
In the case at hand, the problem for patients who see fibers in their open sores is that any doctor who ignores the fibers and just calls them delusional does not break the semantic map from belief to object in the patients’ mind. On the other hand, Michael’s analyses here do the service of *not* ignoring the fibers patients are presenting and I believe does a good job of breaking the semantic belief map by showing how the fibers resemble textile dust that builds up almost everywhere.
Meme, you are veering into epistemology here by defining perception as a belief in that perception.
Sarah’s definitions are a reasonable practical division which is often used to characterize mental aberrations: a delusion is a false, unshakable belief. It’s not a hallucination, the perception of a stimulus in the absence of that stimulus.
You could argue that all hallucinations are beliefs, however not all beliefs are hallucinations. If I believe I have cancer, that’s not a hallucination, it’s just a fixed false belief – a delusion.
Anyway, I think your point was that by examining the evidence, and presenting the visual evidence to the patient, the doctor would be able to demonstrate that they were actually just fibers. This might work in some cases, in many cases of delusion it will have no immediate effect. People interpret their perceptions in the framework of their fixed beliefs.
How do people stop believing in things? I suspect the answer is: “gradually”. There is no “aha!” moment, just a gradual shift of viewpoint.
Many of the fringe Morgies also suffer from a subtly different sort of delusion — Delusion of Reference. So in addition to being deluded about their own condition, many come to believe that they are wrapped up in a global conspiracy — ie the chem trail and nanotech stuff.
Well a very compelling argument… for the past 16 months I have seen 5 Dermatologists, my family physician, who is a real wonderful human being. As well, I have seen 3 neurologists all at the same appointment. Yes, I have a recognized disease called Multiple Sclerosis however every doctor I have seen knows me or can see that I am a down to earth gentleman who was willing to go through the insanity of seeing all these people to have someone tell me what was going on with my skin.
I appreciate everyone of them for seeing me and telling me … Sorry I can’t tell you what this is, but let’s work on helping you feel better! If there is one thing I have found in my travels as a business person a person with a confirmed diagnosis of M.S. etc. I really appreciated the fact that when a Doctor I would see put there egos in between there legs and realized they did not know what this was.
I think to sum up my 2 cents is that all of us need to keep an OPEN mind until the CDC or whoever makes a final diagnosis. No ONE person should be saying Bubkas yet,until so many people come forward just like what happened with Lupus, Chronic Fatigue Syndrom etc. I know now what I have as well as who I am. I have spent too much of my time suffering to know that I cannot go out during the day anylonger. I will now have to go out only at night so people cant see me and the disfiguring scars and open lesions all over my body, face, head and neck. Keep an open mind and put your talents to use. Don’t tell me though that I’m delusional after losing a business a wife and a family that excludes me from activity until we know if I’m contageous or not.
If you keep an open mind you will go far heck you might even be the person who finds a cure to whatever this is and benefit tremendously.
Thanks for reading…
My name is Warren, and I have Morgellons until I’m proven different.
Please, Please keep an open mind.
Warren, I’m not saying you are delusional. In fact I know nothing about you.
I am interested in why you say you have “Morgellons”. I imagine you have some severe itching, which forces you to scratch, and maybe some other skin problems? You have MS, and one of the symptoms of that is sometimes formication. What makes you think your symptoms are not caused by MS?
Hi, Warren. I’m so sorry to hear you have MS. Which type do you have?
I’m sorry I forgot to mention I was diagnosed by one of the best Dermatologists in Canada just last week. It took some prying to get him to say the words, but when asked he admitted that because this disease was not in any Doctors handbook he couldn’t call it Michael. However when pressed he said he would call it and diagnose it as Michael.
I think if more Doctors weren’t affraid of controversy there might be more diagnosis. This Dermatalogist is suppose to be one of best up here. He also diagnosed a woman the week previous. Through the MS clinic I go to to manage my MS, this lady also attended there. I was contacted by them to talk with him as I had been a patient of his for almost 6 months.
He knew the controversy however seeing two patients with exactly the same presentations he felt when pressed to tell me he knew for months, but couldn’t or wouldn’t make the diagnosis. When pressed he said yes you can call it Morgellons not to make me feel better. As I wasn’t looking for a label just confirmation that someone in the field finally believed me. He did confer with a top neuro-phsyc and between the two they will be trying me on some meds as a Guenea-pig. They want to try to calm the autonomic nervous system to hopefully stop the lesions from continuing to blossom.
Bonjour Mon Ami:
Warren
You can call your symptoms anything you like, and that’s what the doctor did.
What makes you think you the same problem as the other 10,000 people who registered with the MRF?
By the way it is now 11,569 according to the CDC. That’s where I registered. I’m just finding out about this disease and had no knowledge of it before this week. A doctor would not say or write something in a patients folder unless he wishes to be open for a lawsuit. So no I didn’t put words in his mouth. From what I have read and the pics I’ve seen the stories I’ve read it fits my unfolding situation to a T.
One other thing, please don’t antagonize me… I have no wish to offend anyone and I don’t appreciate being told I put words in a leading Dermatologist mouth he’s a grown man and could have called my experience MS related which was the first assumption he could have called me DOB (is that the right buzzword).
Am I correct in assuming you have never seen or met a person with this disease?
I’m not here for a fight I have enough to deal with I have Stage 2 Chronic Progressive MS which is a handfull in itself. Believe me I have seen so many doctors in my life I have stopped seeing them. I will give these two guys one last shot as I am desperate for relief. Let me run this by you… did you know that up until 6 years ago the medical community was convinced that only people between the ages of 20 to 40 got MS?
Now they know newborn children have been born with MS and as a matter of fact most childrens hospitals now have MS clinics for children. That was just 6 years ago. All I’m saying is to keep an open mind because when 11k+ people are presenting with the same symptoms can provide the same pics etc. There maybe umpteen thousands who are affraid to come forward or brush it off as I did for 5 months thinking it was my MS and I was affraid to say anything because I figured my doctor might think I was looking for drugs. I was already on Morphine for my MS which I am now off of as the docs thought it might be a reaction to Morphine.
I am a very easy going polite friendly person who has gone out on a limb many times for friends and family. If you needed a kidney and we were compatible I would be first in line to help. Please don’t make accusations that I would put words in a very capable leading doctor in a hospital equivalent to your Mayo Clinic just to make me feel better.
I’m a newbie with this disease and just like when I was diagnosed with MS I had these strange tingling and numbness of extremities should I have been diagnosed with dilusional numbness and tingling of the extremities. The doctors couldn’t see anything visible they were listening to my story and my symptoms fit a disease.
Give it time as more people present to physicians the controversy will subside and this will be treated like anyother disease.
This reminds me of an old camp ditty… There ain’t no flys on me… There ain’t no
flys on me. There might be flys on you guys… but there ain’t no flys on me.
Just like my MS I understand why I can’t speak properly and why I have to write to you from an electrical wheelchair that might cost more than your car. It certainly helps me when I wake up only to find a couple or more new soars I don’t understand the etiology behind it however, 11,000 plus have the same symptoms it’s a matter of time
maybe not in my lifetime, that this will be recognized as a real illness.
Please don’t fire back a comment like you did because just as quick as I found this site I would be happy to leave it. Life is to short and there are no needs for insults. o.k. friend?
Respectfully,
Warren
I just asked you a simple question Warren. What makes you think you have the same thing as the other people who think they have Morgellons?
“By the way it is now 11,569 according to the CDC.”
Sorry to be lazy… but where does the CDC reveal this number?
I understand, and appreciate the clarity you’ve supplied, Warren, and I’m so sorry about your situation.
Thank you Smiley… However I have had the MS for 20 years now and I’ve gone through this situation back then as well. The great Doctors didn’t believe I had MS until the MRI machines came out. I was scanned and voila I had a label. Th of the type of MS I have they couldn’t even give me any experimental drugs at the time that are now commonplace for newly diagnosed cases.
Smiley I do appreciate your feelings of sorry, but please don’t take this the wrong way… the MS has made me a stronger person both emotionally, spiritually and more aware of myself and place in society. I have changed my way of thinking being more open to life in general and I think have grown up and grown stronger… a blessing in disguise? Maybe.
Back to the question of why I think I have the same thing others have. I will of course not discuss my medical case on the internet, but just to say I have read so many of the stories seen the pics. I could be one of those pics I can tell you almost the same story. I think I have answered this question in previous replies, however I can see I’m not going to change anyones mind. Nor, is it my place to do so. Talk with my family doctor who saw this start from the start to where I am now. It’s no coincidence, having never heard of this problem before last week, but dealing with it for the past 16 months there was no one leading me down any garden path to a diagnosis.
I was told about this from a qualified clinician and as I said I had stopped seeing doctors except for my family doctor maybe once a month to keep a record of the lesion progression. When I was told to call the Dermadoc he said yes he knew for months. I stopped seeing him so it was my fault I could have known sooner. Heck I just got the internet working again this week as I have a difficult time seeing so it was no use to me to have it. I am currently on a friends computer until the MS society is going to hook me up with some special equipment.
So I hope I answered your question. Would you please answer mine. How many people have you seen with this condition?
Respectfully,
Warren
How many people have I seen with multiple sclerosis?
Quite a few.
How many people have I seen who think that what they have is
“morgellons disease”?
None, in person, Warren, and, with all due respect, I think I’ve learned a whole lot in the past three years concerning why Mary Leitao came up with her “morgellons disease”, as well as why those who support her mission have done so.
Pardon my ignorance as I haven’t reviewed this whole site and just jumped into the discussion. I don’t know yet who Mary is and her story. I do enjoy a good conversation as long as both parties have and keep an open mind. Having never seen someone with this condition how can you be so sure it doesn’t exist.
Obviously something is popping up where people have the same findings presenting in different parts of the globe and no I don’t buy into conspiracy theories or men from mars infecting people or government conspiracy. I have a clean mental health ticket which I know I will be robbed of eventually from the MS that much I am totally agreeable with. Until then I will take the side of the sufferers as not to be a martyr, but as a person who thought they were infested with some kind of bug and all my tests were negative. I was able to say o.k. it’s not infestation, but something that has not responded to all of the antibiotics both topical and oral. I and my doctor agree I have this ailment.
I will suffer in silence as I do not wish to draw attention to myself, and with the help of a makeup artist I will learn how to hide the lesions and hopefully find or create a life as I will not give up until it is not my choice. I do respect your side of the discussion as there are not enough people yet who have to register or whatever the process is.
However the investigation is underway at the CDC and eventually an answer will be found.
I feel I have taken too much time away from others and would like to hear from other people. So I will hang back for a while and will check in from time to time. I wish you all the best and hope this will not take to long before we get an answer.
Respectfully and Best Wishes,
Warren
Randy, we’ve gone over this before.
What would I see that your doctors could not?
What would I see that you cannot photograph?
I’m not saying you’re not ill. I’ve no idea what is wrong with you. This site is not about your illness. It’s about a mistaken belief that there is evidence of a new disease, and a mistaken belief that fibers are part of a disease.
Here we go agains with misinformation and BS———
My doctors saw what I had–the ones that actually looked, since many did not look at all and diagnosed based upon a learned line in their medical books. The ones that did see–were shocked and had no idea what it was that they were looking out and were quite frankly taken back at what they saw but had no idea how to help me.
The fibers are microscopic and I don’t have a 100X microscope that takes photos and for your pleasure I will not buy one. Anyone who is truly interested i seeing the truth will meet with me. Those who only want to talk lies will avoid as you have time and time again.
Like anything else seeing for yourself is what is needed. What are you so afraid of? This site is about debunking Morgellons and that is the disease I have so cut the BS-ing out and speak the truth for once in your life.
This site is set up to debunk a very real disease otherwise these those that run this site are huge fat slobs with nothing better to do than sit and type about something they know nothing about when they could have a life doing something else.
Think about it for a moment audience–how much time these people spend in their lives, monitoring a site and typing and talkng about a disease they have never seen and telling the world it does not exist. Why? Why would they do this For what reason? The ones that claim they had this and are saving a delusional world from being delusional are X meth and heroin addicts. So now everyone hass to be them or they are delusional. They were on drugs and that thought they had this. They were wrong but now they have to validate their own addictions and the results of those addictions by saying no one ahd this. How NUTS is that and that is exactly what they are doing–if it is true that the people are who they say they are.
How bored do you have to be to spend hours per day on a site you have O involvement with its disease–trying to debunk it?–So very pathetic.
One thing many sites that have no connection to this disease but cause people to visit it by being controversial is to collect your e-mails so they can sell them to people hocking a cup about cures for this disease. So I guess they have a motive–it is either their paid job to do this–they are selling your e-mail addresses or they are bored losers. Which is it?
Randy, would you give me your address again, please?
If you would like my address write me at cisfl2004@netzero.com or just look me up on the internet–my address is plastered all over. I w ould prefer to have your e-mail address is you want my home address.
But first let me know if you are definately coming to see me and that is why you need it. Why do you want it? Was the question just to be funny?
I just ask that you don’t send me anything threatening or any time of explosive devices–are we in agreement with that?
Please respond here.
Thanks!
Hi Warren,
You say (in part) “. Having never seen someone with this condition how can you be so sure it doesn’t exist.”
I feel that “Morgellons” is not a distinct medical entity because I have yet to see two people who have the same symptoms. Are the fibers visible? Or invisible to the naked eye? Are they clear? Blue? Are they from insects? Or not? Do they go into your skin, or come out of it? Or both? Does it cause lesions, or not? I have a disgusting scrape on my knee from falling UP some stairs (so graceful), and it has fibers in it. Is this Morgellons?
People with Morgellons allegedly report to see 10-40 doctors (though no data has been produced for this number). If I thought I had a disease, and after even five doctors told me it was only eczema, I might start to wonder, maybe I actually do have eczema?
Let me field your questions. The fibers are microscopic–most of them. It is a multi-level-tiered-diseasefilled with symptoms that are quite unusual and hard to believe unless you actually see them yourself. Therefore, no one who has not seen anyone up close and personal should speak about what they have neve seen.
The fibers can be viewed if one takes a hand held 100X Radio Shack microscope and places it up against an open lesion. YOu will see things that appear to be hairs, yet much smaller that have the appearance of smokey tubes that stick out of your skin. These smokey tubes in the first stages of the disease, shoot out–for lack of a better term–little teeny black round looking balls and these little balls unwind and become these fibers. For some reason they are able to act like a cameleon. If I wear black the EXACT fibers are black, orange, orange–that is the weird part. They are not different fibers-they are the same fibers. now that is fiber type one.
Fiber type two are the balls of rolled up fibers–usually black and reddish, that come out fo perfectly good skin if you rub vaseline over and area. The amount of these pin point dots that come out when you do this can be as many at hundreds an hour and when it first happens it scares the hell out of you. It causes a panic attack. If you look at them under the microscope they all look alike. Much like what come out of your hairbursh when you clean it but they are the size of a pin head. We are filled from head to toe with these and that freaks people out–so much they require meds to calm them down.
The third and the most unreal of all are the long fibers that you find around the house. These are the ones that make people believe that this thing is from some alien species. Youan hold up a piece of your own hair–mine is quite long–and one of these fibers that look like your hair–and one will act like an antennae of a bug and will move straight out to the right and left and do what we all know as a dance. This freaks you out and you can not believe your eyes and you have to call in family members and friends to see it and they freak out and you just try and forget you ever saw it and you prefer not to tell anyone cause you know, unless they see it themselvs–they will not believe it and you know if you didn’t see it yourself–you would not believe it either–and even though you did–you still don’t believe it.
Now the fourth pain in the butt is that these lesions, different than pimples or cuts you get that heal ASAP never seem to heal and when they finally do–most take 6 months or more to heal and cause great pain when they are active–remove the pigment from your skin and sometimes take tissue and leave sunken holes. If you leave them alone they get worse–to a point where you honestly feel that you may lose a limb–my case my arm–it is better now. If you peel them–not pick them–because if you pick them the fibers dig deeper and the lesions take longer to heal–but if you peel the top layer which holds the “dead” fibers within the scab, the lesions heal at a faster rate,
Now I have found many things that work for healing–Equimax–topical made for horses–it kills whatever it is–as done Sulfur mixed with cream–some old remedies still work. When you use the sulfur, be careful of your eyes. Also when you use the sulfur and these lesions start to peel off by themselves–you may freak out about how deep the lesions go into your dermas.(Skin) Plus for some reasons these fibers attach to nerve ending and as you peel it hurts like the dickens but once the final layer is off, the pain is gone and you have normal feeling–another strange thing.
That is why I state that if you want to see a real person with this I am willing to be a truthful “circus show” for the sake of humanity. But if you have never seen anyone with this–you have no right to talk–you have not got a single clue as to what you are talking about.
BTW:I never got that E-mail–wonder why? Whay ask for something and not follow through? Just trying to be funny?????
Scuze the typos—I am busy and don’t have the time to correct–sorry.
One more thing–I do believe that the fibers or what makes them, use the skin for a food source or breeding source and thus a lesions is an active site for reproductions and parasitic nourishment. I do believe that we have to figure out the reproductive cycle so we can stop the new ones–whatever they are–from living while killing off the old ones. Maybe we need something like cats and dogs take when they have fleas–I don’t know but most meds don;t work–they do for some time and then they don’t. It has a MRSA type resistence to meds. Fibers can be found in feces–tons of them–mucous–like in your nose–and other places , and if you rub your arms after you exercise and place the sweat inder the microscope they are in there too. Most of us have really bad problems with swollen lymph nodes and on CT scans we have cysts on kidneys-ovaries-liver and have goiters or some type of thyroid problems. The cysts are never bad enough to do anything about but will get you a level 2 if you try and get insurance coverage. Most of us have horrible fatigue. You can be fine one minute and the next minute you can barely hold your eyes open–it is horrible. In the beginning stages you can forget your own address–it is like a type of aphasia–you can’t find the word but you know what word you are looking for. Many have found to have lesions on their brains when they have gotten MRI’s and this could be the cause. I do believe that they cause internal as well as external lesions–a type of flesh eating disease–but not bad enough to kill you.
Whatever it is it is parasitic and most of us feel that it can live with us if it would stop making us itch and creepy crawl-lose our hair-have horrible disfiguring lesions and cause us to forget and get tired–but that is not the case–we have to live with all of this and then have to deal with IDIOTS like the ones on this site that have not got a clue or how we suffer and how real it is and for whatever reason are dead set about trying to say something that is real and out there and contagious does not exist. That is the weird times 500–and then doctors that say you are DOP and they never evaluate you according to DOP protocol–which is just NUTS and they never look at what you have–which is evn nuttier–and they wonder why we lose it. These doctors are responsible for pushing many to suicide along with this site and all of that will be settled one day–I am sure of it.
Back to wrok–I ve waisted too much time typing–hope this helped those who are suffering- Those who refuse to believe–I pray for you to see the light and join humanity and get out of the gutter and pick yourself out of hell.
Late gators! Sorry about the typos.
Randy, I’m being about as funny as I am tired of your repeated lies about tallcotton and me.
hey smelly
you aint funny
repeated lies, wtf? karma is coming to get you, wait and see
hahahah!!!!
I am just blown away by this site… it is pathetic… if you all are “WELL”… why the hell aren’t you out LIVING your life VS trying to convince a bunch of sick individuals that you could care less about… that. “your right & they’re wrong”.
The only LAUGHABLE ounce of semi credibility you receive is when, Sarah B., who really doesn’t have the impressive credentials that she pretends to… adds in her simple 2-4 sentence responses in which she repeatedly brings up the “lack of peer reviewed evidence/info/WHATEVER!
SOON-Ms. Sarah wanna B. will have all the literature she could possibly dream for her & her ‘peers’ (so she says/wishes) to review…
The rest of the regulars on this site… well, even IF ‘Morgellons’ was something of a delusional nature… at least, those who say they are suffering with it have a reason/excuse to spend hours on line searching for answers and fueling their “so called” mentally ill minds with back & forth BS with people named “smileywhatever” & “tallcotton”… BUT-YOU ALL? What the hell is wrong with you that you waste your SELF proclaimed sound mind/life to live every spare second on line arguing with a group of people that YOU SAY are crazy.
If you really believe that… back off… get a life. YOU are obviously a bit infatuated with these individuals & clearly NOT mentally stable yourself to live your life doing “this”… how about you go out and really make a difference… maybe you could buy some Girl Scout cookies or something & call it a night, month, year, life…
Foolish people… so foolish…
I POSTED THE ABOVE COMMENT LAST NIGHT AND WANTED TO MAKE SURE IT WAS READ BY THE “HEAD HONCHOS” WHO ARE RUNNING THIS SITE AS WELL AS THEIR MOUTHS ABOUT SOMETHING WHICH THEY CAN NEVER PROVE IF IT DOES, OR DOES NOT EXIST… IF YOU ASK THEM WHY THEY NEVER STOP POSTING THEY WILL SAY THAT THEY ARE OUT TO HELP “DEBUNK” THE MORGELLON’S LIE & LET EVERYONE KNOW THAT THE PEOPLE WHO CLAIM TO HAVE IT ARE SIMPLY, DELUSIONAL… IT’S THEIR ‘SO CALLED’ CONTRIBUTION TO THE COMMUNITY/WORLD… WHAT WOULD WE DO WITHOUT THEM?
I BELIEVE THAT THEY HAVE TRULY CHOSEN THEIR BATTLES SO VERY……….. UNWISELY!!! YOU’D THINK THAT WITH ALL THE OTHER WORTHY AND NECESSARY CAUSES OUT THEIR THEY WOULD HAVE CHOSEN SOMETHING DIFFERENT TO DEVOTE THEIR EVERY WAKING HOUR TO—OR, AT THE VERY LEAST… MOVED ON TO ANOTHER ONE BY NOW.
WE GET THE POINT-YOU DON’T BELIEVE IT… YOU THINK THAT THE PEOPLE ARE SUFFERING FROM DOP VS THE UNTHINKABLE POSSIBILITY THAT THERE IS SOME SORT OF NEW EMERGING INFECTIOUS DISEASE THAT MIGHT BE AFFECTING ONE’S SKIN AND THE SKIN IS THEN DOING IT’S JOB BY REJECTING & EXCRETING SOME SORT OF FOREIGN MATTER THROUGH THE PORES…
I KNOW THAT YOU ALL WILL REPLY TO THAT WITH YOUR STATEMENTS THAT EVERYONE IS EXPERIENCING DIFFERENT THINGS AND HOW THE HECK DO WE THINK THAT IT COULD POSSIBLY ALL BE RIGHTFULLY COMPARED & DECIDED THAT WE ARE SUFFERING FROM SIMILAR AILMENTS… ESPECIALLY, CONSIDERING THAT THERE ARE JUST “WAY TOO MANY DIFFERENT SYMPTOMS”… BLAH BLAH BLAH.
WELL, LET ME TELL YOU THIS… ANYONE AND EVERYONE WHO HAS THE ONE SYMPTOM… YOU KNOW THE ONE? THE ONE SYMPTOM THAT IS SO FREAKING UNBLIEVABLE ON SO MANY LEVELS… THE ONE THAT IS SO HORRIFYING, EMBARRASSING, BEYOND EXPLANATION & RATIONALIZATION,… YOU KNOW, THE ONE… THE ONE WHERE SOME FUNKY SORT OF MATTER THAT IS CLEARLY VISIBLE & CLEARLY NOT SUPPOSED TO BE THERE… IT’S 100% ABNORMAL… NO 200%… WELL, THIS MATTER BEGINS COMING OUT OF YOUR PORES IN SUCH AN ABUNDANCE… THAT YOU COULDN’T IGNORE IT IF YOU TRIED… IF ANYONE HAS FUNKY MATTER COMING OUT OF THEIR SKIN SIMILAR TO WHAT I JUST DESCRIBED… I’M THINKING WE HAVE SOMETHING VERY UNWELCOMED—-IN COMMON.
I COULD IGNORE SORES, BRAIN FOG, ITCHING, ETC… BUT, FUNKY STUFF COMING OUT OF MY SKIN THE WAY IT DOES… SCREW ALL OF YOU “DEBUNKERS”… PERHAPS YOU COULD BECOME A “DEFUNKER” & HELP CURE US ALL… PLEASE! I WISH YOU WERE RIGHT! I WISH I WERE CRAZY!! I WOULD THROW A FREAKING PARTY & EMBRACE MY NEWFOUND INSANITY!!!
I’M SURE THAT ‘SARA B.’ COULD PICK APART EVERYTHING I JUST WROTE WITH HER MEDICAL EXPERTISE & EXPLAIN WHY & HOW SHE KNOWS THAT THIS IS NOT MEDICALLY POSSIBLE EVEN THOUGH MANY DOCTORS ARE NOW STATING THAT AFTER RESEARCH AND PHYSICAL EXAMINATIONS THAT THERE IS INDEED, SOMETHING GOING ON. HENCE, THE CDC, MAYO, & MANY OTHER REPUTABLE MEDICAL CENTERS ACKNOWLEDGING THE NEED FOR FURTHER RESEARCH, INFO. ON THEIR WEBSITE, HOTLINES /PHONE NUMBERS FOR SUFFERERS TO CALL, ETC.
I KNOW THAT THIS WOULD NOT BE HAPPENING IF THERE WAS NOT A SUBSTANTIAL AMOUNT OF VALIDITY WHICH FUELED SUCH GIGANTIC STEPS TO BE TAKEN… & THESE PEOPLE WOULD DEFINITELY NOT TAKE THESE STEPS IF THEY THOUGHT IT WOULD RISK FEEDING THE MENTALLY ILL MINDS OF A NEWLY GROWING MASS OF PEOPLE WHO ARE, COINCIDENTALLY, SUDDENLY STARTING TO SIMUTANEOUSLY SUFFER FROM DOP BY SIMPLY COMING ACROSS SOMETHING ON THE INTERNET THAT WHEN READ… IS SHOCKINGLY POWERFUL AND MYSTERIOUSLY COMPELLING ENOUGH TO MAKE ONE START BUSTING OUT THE MICROSCOPE SLIDES THEN RIPPING THEIR SKIN APART AFTER THE DUST IN THEIR HOUSE STARTS TALKING TO THEM (SARCASM FLAG).
BOY OH BOY! SIGN ME UP FOR THAT CLUB… THAT SOUNDS LIKE A HOOT.
YOU KNOW… REGARDLESS, CRAZY OR SANE… IF THIS INTERNET CULTURAL PHENOMENON HAS CREATED SOMETHING OF THIS MAGNITUDE AT SUCH A RAPID PACE… I SAY, WE BETTER SHUT DOWN PEOPLE’S PRIVATE HOME COMPUTER USE QUICKLY BEFORE IT BECOMES CRIMINALLY POWERFUL CAUSING MILLIONS… NO, MAYBE BILLIONS… TO START DOING ALL SORTS OF THINGS IN WHICH TO MAKE THEIR LIVE’S COMPLETELY MISERABLE & THEIR BODIES HORRIFICALLY DISFUGURED BY THE MERE POWER OF WORDS & INTERNET SITES… WOW! AGAIN-SARCASM FLAG.
OF COURSE, THE OTHER SITES ARE JUST AS DETRIMENTAL IN A DIFFERENT, YET REAL SORT OF WAY… FOR EXAMPLE-ALL THE DEBUNKING SITES THAT ARE ALREADY EXISTING AND ALL THOSE TO COME THAT ARE DEVOTED TO… WITH ZERO EVIDENCE/PROOF… REPTITIVELY TELL ALL THE PEOPLE THEY CALL MENTALLY ILL, THAT NOT ONLY ARE THEY MENTALLY ILL… BUT, THAT THEY RETARDS… THEY ALSO WARN ALL ,THAT THESE ILL-MINDED INDIVIDUALS… THOUGH COMPELTELY MORONIC… ARE PERSUASIVE & MALICIOUS LIARS WHO ARE OUT TO SCREW THE WORLD WITH THEIR ATTEMPTS TO RAISE MONEY FOR THEIR CAUSE… THANK GOODNESS SOMEONE IS OUT THERE TRYING TO SAVE THE WORLD! GOOD THING THAT THEY WASTE HOURS, DAYS, YEARS, CUTTING DOWN ILL PEOPLE… AND THEY FEEL AS THOUGH THEY ARE DOING EVERYONE A FAVOR? HHHMMMMM?????
PLAIN AND SIMPLE-CUT & DRY… GET A LIFE. I BET THAT IF YOU CHARGED EVERYONE WHO VISITED THIS SITE A DIME FOR EVERY SINGLE TIME YOU WERE TOLD TO “GET A LIFE” YOU ALL WOULD BE BILLIONAIRES BY NOW!!! YOU MIGHT WANT TO PONDER THAT THOUGHT FOR AWHILE…
THE BEST PART OF THIS BACK AND FORTH BS BLOG IS WHEN SOME MORGIE MAKES A POINT THAT YOU COULDN’T DISPUTE/DEBATE IF YOUR LIFE DEPENDED ON IT AND YOU GO BACK TO YOUR… “IT’S SO SAD… THESE PEOPLE ARE JUST TOO SICK TO EVEN REASON WITH… IT’S NOT THEIR FAULTS… THEY CAN’T HELP IT… THEY HAVE COMPLETELY LOST ALL ABILITY TO REASON AND IT’S A LOST CAUSE ” …
HA!! THEN GIVE IT UP & GO OUT AND GRACIOUSLY LIVE YOUR HEALTHY LIFE VS TRYING TO MAKE MY LIFE… THE ONE I AM ALREADY SUFFERING IMAGINABLY… JUST STOP MAKING IT HARDER. YOUR HEALTHY!!! GET OUT OF THE HOUSE… COUNT YOUR BLESSINGS AND SHUT UP ALREADY. EVEN IF YOU THINK I’M DELUSIONAL… SO WHAT? STOP MAKING PEOPLE’S LIVES WORSE & PUT A LITTLE MORE TIME INTO MAKING YOUR’S BETTER, TRUST ME-THERE IS DEFINITELY ROOM FOR IMPROVMENT!
“amused”, this is not about whether anyone is delusional or not. This is just about whether Morgellons is a distinct disease, and if the fibers have anything to do with the patients symptoms. It’s about the quality of the science and the gullibility of the media. That’s all. I know people are suffering, and I feel very sorry for them. But I don’t think the MRF is helping them.
If A Dr. would take skin and look maybe in most cases he would find something instead of passing judgement just do this , evern it may result in working a bit harder for him after all what are the Drs here for , they let use do the brain work.And another thing looks like one would just send test in for looking into not wait untill we are at the grave side.I am still waiting to get my dr to listen to me and check my skin ha just come back in a month is all I get.If one itch just check it out lol.
greg, you have no way of discerning what I addressed to Randy, and that’s why I addressed her. Karma’s now, greg, no need for me to wait on it. Uh-huh-huh-huh-ha-ha.
Let me make tis perfectly clear. What many term MOrgellons is a syndrome as of this moment that consist of one thing that is familiar to all of us that have it and that is the fibers–these unreal–not of any material known to man–in that combination of metal and sugar. That is the thread that binds us. All other things are things that happen to us because these fibers.
Understand that and you understand the disease. It is nothing anyone has ever seen before and doctors think that nothing new will ever be discovered that doesn’t exist already and that no new disease wil ever happen from here to eternity. Theyre wrong. This is a new disease that no one has ever seen and they have no clue what to do about it. There are no more Microbe Hunters left in the world.(Read the book) Marcus Welby and House does not exist. Insurance companies and drug companies control doctors and their practices. These are facts that can not be denied. If anyone out there believes that nothing new under the sun could ever be out there–then they are the delusional ones. Fear has replaced wisdom and common sense and those that know what we have know that this has never been seen before and is new–althogh we have it–we have lived past out fear and those who deny us our knowledge are hung up in their own fear based mentality
This is new–it IS contagious–it IS spreading and no one knows how to control it so they have to deny it so people don’t panic. That is the truth. Like it or not.
Get your heads out of your asses and help not hinder the process of discovering what this is and getting the funding for research and//or the money to investigate who created it so we can find out how to wipe it off the planet before everyone is infected. Get your faces out of the cheescake and be a productive part of society and not a destructive force of society.
And those that were addcited to drugs–you are now addicted to negative and nastyness. Get off the drug and become a productive member of society.
Jesus loves you, Randy, and so do I. What are you doing for those high platelets?
Randy,
“Morgellons Disease”, as you call it, is understood quite well. It’s been understood from the beginning. The fibers are NOT the threads that bind you. The belief that the fibers are anything significant is the thread that binds you. Why is it that when someone tries to help a “Morgellons” patient, that person is called all manner of bad names. With the same mouth filthy mouths that the “Morgellons” patients pray for relief from their suffering, they tell us that they hope we rot in hell. Do you actually believe that God hears the pleas of such seemingly Godless people?
You don’t have a clue
But you’ve more than given clues, Randy, concerning the reasons behind the cause(s) of the misinterpretations you have of your skin condition, as well as clues to the reasons for your other misconceptions.
Providing you’re a woman of integrity, and have been honest about having received a diagnosis of sarcoidosis; providing that you’ve been honest about having had your thyroid biopsied and hurthle cells were identified; and providing that you’ve been honest about consistently having high platelets for years…
Q. What is standing in the way of treating those conditions?
A. “Morgellons disease”, or “The Fiber Disease”
Q. And, that’s what?
A. A manifestation of your underlying illness(es)
Based on your online behaviors, I suspect there’s more that you haven’t told, as well. I’ve read plenty of what you’ve had to say over the years, and I want you to get the kind of help you need to recover from what you’re going through. I don’t know how you can burn the candle at both ends with no help, as sick as you are, too, and I know that it has to be exceedingly difficult, providing that what you say is true. Providing that what you say is true, also, about having so many members of your family in the health care industry, surely, if they know about the conditions you have, somebody could assist you if you’d only ask them, and, then, allow it.
Best Wishes,
Smileykins
Again–I state that I will meet with you face to face and you can see what I am about and I will do that with anyone who asks and trulyants to know. Goiter happens to be a part of this disease for some reason as does early menopause, high c reative protein and other auto immune commonalities. Since those that have this are human we also come with a variety of other conditions. I have been told that none of my conditions require anything–although I have asked for more tests and further evaluation, I have been denied. So I have gone after more conclusive findings and have been told I am OK. My Sarcoid is not pulmonary and has not other organ involvement so there is no need to treat with steroids–in fact my D level is low–unheard of in patients with sarcoid–so the non caseating granulomas may be a signal of this disease and not sarcoid at all.
I will stop once again from coming here–it is a waaste of time since all the negative people refuse to meet or see a person that actually has this condition and it is futile for me to argue with ignorance.
Goodbye and those who need to talk to me can contact me at cisfl2004@netzero.com
Randy
Remember that MOrgellons is the start of Codex Alimentarius–see Esoteric Agenda part 4 on U-Tube
Randy said:
“More conclusive findings” usually correlates with having received “more tests and further evaluation”.
I am so confused.
IT IS SO SAD THAT THERE IS A WEBSITE FOR PEAPLE TO READ ABOUT US THAT SUFFER .WE ARE REAL PEOPLE WHO ONLY WANT A NORMAL LIFE NOT BE MADE FUN OF OR TOLD WE HAVE FIBERS THAT CRAWL AND BITE IF WE ARE NEGATIVE FOR DRUGS AND ON NO ITCHY PILL .GOOD GOD TREAT US FOR INTERNAL PARASITES AND LETS GET RID OF THIS ONGOING HEARTACHE. I BELIEVE IF ITS NOT TREATED EARLY THE LONGER ITS GONNA TAKE TO HEAL……
Sandra, this blog isn’t a website for people to read about those who consider themselves to be suffering from whatever they have consciously chosen or been tricked into calling, “morgellons disease”. There are, though, many accessible to the public (of course) message boards, blogs, pictures, and videos, where such types of patients share extremely intricate and explicit details of what living with their illness is like. I may be mistaken, but I don’t think that there are very many people making fun of this serious matter.
Sandra,
Do you have internal parasites? Or do you have Morgellons?
I have been reading some of your posts and I to am suffering from some of the same things yall are. I live in Fl. and I thought this was from my dogs and mites but I have been going through this for about a year and half. It started out on my fingers with itchy blisters and on my inner knees and I am a scratcher anyway so I have destroyed my arms and legs. Living in Fl. you should be able to wear shorts and short sleeves. The doctor I went to was a general one and I went twice. I was very upset when I went the last time so he said I was depressed.(he would be too if he had done this to himself)I also had went to see a P.A. at a dermatologist office and was given cream that cost $50.00. I have used about 8 tubes of the medicine you put on from head to toe. I have been upset with some personal problems but that was about a year before this started.I work out in the yard a lot and have large Oak trees and squirrels. I had some blood work also checking my liver and cholesterol which turned out fine. I went back to the Dermatologist and his P.A. and they said everyone has parasites and I could go to get medicine to numb my nerve endings. I work with a microscope everyday and I will itch and I will scratch and there will be a fiber or it looks like skin twisted up sometimes. I sting and itch out of the blue on my stomach, legs arms and I can tell exactly where it is coming from because I take a pair of tweezers and gently rub across and there will be a flke of skin embedded. Al another lady at work is itching and she watched it under her scope and watched the itchy blisters turn dry and white flaky spots. I am not crazy, I support myself with a house, car and all my bills and I don’t like the idea of people thinking that. It pisses me off. I also see little fibers or something floating in the air sometimes around me at home and work and I was trying to catch one and another girl saw it too. This is governing my life!!!!!!!!!!! I hid it until I couldn’t take it no more ana I started talking about it to people besides my family. I wouldn’t even sleep in my own bed or drive my car fearing I had something that would get on them. This is driving me crazy….. I’m not crazy but I will be if I can’t get rid of this or find out what it is.
killamasaurous, I’m sorry that someone, somewhere, in your life, must have caused you to feel as though they’d implied that you’re, as you’ve put it, “crazy”. Since you feel that what you’ve explained, and called “this”, is driving you there, do you mean that you might view yourself, possibly, somewhere in the future, becoming what you refer to as “crazy”? I’m just trying to understand if you mean that you’re looking at “this” as though there is a starting point, and a final destination point, with no journey in between the two.
I swear that I’m just trying to understand, and I’m sure that I’m not alone in wondering what some people, such as you, and the coworker you’ve described, have as expectations for yourselves.
Please bear with me, if you can. Leaving people who’ve rarely ever had itching as severely as you out of the equation, what would you like all of the other people, who have, to think about people who feel the need to try drawing their own conclusions about why they itch in such manners as you’ve described?
What would you like all of the other people who itch, severely, and use the tested, tried, and true, medications and suggested methods of alleviating their skin problems, to think when learning of the existence of people who scratch, pick, scrape, and pull, cellular and environmental debris from their bodies, as well as from their environments?
I just want to know, and have it explained to me in a way that I can understand, why you look at filth underneath a microscope? Are you feeling that it’s teaching you something?
Thanks, Smileykins
zy before this is enouph to make you crazy and if this were happening to you ,you be on the crazy chang gang right along with the best of us .why dont you stop referring to us a phychotic b cuz thats far from the truth.if this didnt happen to me ,my life was great before GOT IT .
Killamasaurus,
You say “I’m a scratcher anyway,” and then “it looks like skin twisted up sometimes.” What makes you think it is NOT skin twisted up?
Also you say ” Living in Fl. you should be able to wear shorts and short sleeves.”
I totally disagree. Mosquitoes are so bad in the southeast I hate wearing shorts and short sleeves!
I see all the people that responded to my blog didn’t understand! All I’m trying to do is figure out what is making this happen. I’ve used topical medicine such as creams, ointments prescribed, etc. I’m not crazy,nor do I think I’m going crazy! I didn’t mean that literally…. I just want to know what it is. Is it nerve endings, mange, ??????? I am not a doctor nor do I claim to be. All I know is that I’m forty one years old, single and I would like to think that I have a nice future ahead of me. I am not looking at filth under the scope. I am a clean person. What I said is that when I itch and scratch sometimes I see something which might be a blonde body hair. I am looking to see if I see something unusual not filth!!!!!!!! What I meant by living in Fl. and wearing shorts is that I would like to wear what I used to wear and not feel insecure of my arms and legs because they are scared. Believe me I’ve seen all kinds of bugs in my yard. I’ve been bitten by plenty of mosquitoes. I love to work in my yard and I love plants. I wake up in the morning most days and it feels like my skin is tingling underneath. I will itch and it feels like a stingy spot in different spots of my body. There will be a skin flake where it itch’s. (embedded, not loose) I don’t have a clue what it is. I still think maybe it is something to do with my dogs which I take very good care of…. We might have the same thing. What makes people think that a mite couldn’t carry a disease just like mosquitoes. Hell, I just want to be Happy again and feel just like I used to feel. NO SKIN PROBLEMS NO NERVE PROBLEMS … I’m hoping that everyone will find out what their skin problems are so we can all get back to a normal life. I carry on everyday just with ithchy,stingy skin 😉
To add to what I mentioned earlier, the lady at work was just letting me know that itchy blisters pop up on her as well. I know she has allergies really bad. The same exact thing that is happening to me. She doesn’t dig in hers. That’s my problem, I keep scratching until I tear my skin and then the vicious cycle begins. I won’t leave it alone and that’s why I have scars(Obsessive compulsive behavior) I know a lot of people who scratches at pimples they same way.just a bad habit. Nobody has aver said I’m crazy, only in a funny, sense of humor kind of way. What I mean is that your trying to describe what is happening and right away they giggle or laugh when you are being serious in trying to put into words what is happening. They always try to diagnose themselves. They lady at work doesn’t have dogs and doesn’t work in the yard much. But our building gets so dusty at work. I have taken Allegra for several years but the P.A. said Zyrtec is better for skin problems. I also there is such a thing as mis diagnosis…HELLO… All the doctors I have seen says don’t believe everything you read on the internet. I’m not stupid… The only reason I ever looked on any website is to see if any other people were having the same problems. Maybe I won’t blog anymore, I’ll just read. I never meant to offend any of yall, like I said I just want to know what the hell is going on with my skin, nerves or whatever. I also never have had an allergy scraping to see exactly what I possibly be allergic to. My son has and he is allergic to about nine or ten different things including dust mites
killamasaurous, thank you for explaining yourself so well.
Uh-oh, lookie here. (Not for “morgellons’ patients”):
http://www.justin.tv/humanlabrat
definetly not ,, will this start something new,,
Hi killamasaurous. You will not get any help here – it’s used largely for debunking the claims of those who seriously need help. I have the stinging and biting and black specks showing up under my fingernails. Eyesight has greatly diminished in the last year, joint pain, confusion, fatigue. I’m searching, like you, to find answers before it gets worse. Check out morgellonsusa.com and you can also go to healthsciences.okstate.edu/morgellons/index.cfm (Oklahoma State University) for their current research. You are not crazy nor are you going crazy. You know your body better than anyone. Listen to it and continue your search. Health and peace to you.
And I forgot to mention perhaps the most important site carnicom.com linking morgellons disease to the chemtrail sprayings happening now in most of the world. If you don’t ‘believe’ in chemtrails, then you’re not paying attention. They’ve been stealing our blue skies since 1998. Aerosole crimes indeed.
Nothing changed in 1998 LauraLee, “chemtrails” are a hoax. If Morgellons was related to “chemtrails”, then why are there so few cases of Morgellons in New York, when there seem to be more “chemtrails” there than anywhere.
What you call “chemtrails” are simply aircraft vapor trails at high altitudes.
Sorry Michael. We’re an hour from the airport and see passenger planes flying through with little or no condensation trail next to other planes spewing chemicals over the schoolchildren playing on the school playground close by. I watch them fan out, melt together and hang in the air like a sickening soup blocking out out the sun on some days. Airborne fibers are matching those taken from clear, unbroken skin as well as samples in the mouth. You may throw a couple of people off track here……….but we’re figuring it out. This is no longer the land of the free – but I see from these blogs that many continue to be the brave through some of the most horrible circumstances this world could produce. Your time would be better spent helping those in need. You’re on the wrong side.
Everything you see in the sky has been explained:
http://contrailscience.com/
They’ve got a photo on the front page of “chemtrails” from thirty years ago! So what’s with the 1998?
‘Everything has been explained’ to you perhaps. This is your site, is it not? Looks like you, smileykins, tall cotton and sarahbiondedunn rule the site. You seem to spend hours a day discounting the pain of others. And BTW, this site looks amazingly similar to the contrail science site you referenced. Bullshit! Nothing has been explained. The mainstream media is ‘owned’ just like you. As for my explanation………I am not a serial killer so I have no idea what lives in the minds of one. You’re killing our children, our wildlife, our atmosphere. There is no greater evil nor has there ever been.
I said “Everything you see in the sky has been explained”. Chemtrails have been explained, yet Morgellons has not been explained.
I don’t know what is the cause of your health problems. I don’t know what the causes of the other Morgellons patients’ health problems are. I don’t pretend to know, and I never have.
This site is about examining if Morgellons is a distinct disease, and if the fibers have anything to do with health problems. I look at the evidence and the claims presented, and I offer analysis, and I present new evidence, and related work.
Since this site began two years ago, I’ve had the following text on it:
I understand that some people who think they have Morgellons also think that I am “dismissing” their problems. Nothing could be further from the truth. Having observed for several years, I am acutely aware of the very real suffering that these patients have. They are certainly suffering. The physical symptoms are real. They do have itching, they do have sores and other skin problems. They do find fibers on their skin.
I want these people to improve, to get well. I think they can do this best by working with their doctor to find a set of treatments that works best for them. I feel that the actions of the MRF are getting in the way of effective doctor-patient parternships, and hence denying these patients the care they so desperately need.
I do NOT know what is wrong with you. But neither does the MRF.
Nothing is ‘wrong’ with me. As we live and breathe, we’ve fallen victim to a time of change that is so wrong that I wonder how we will ever survive. The victims, and I believe that each and everyone of us is at risk, continue to live a painful and frightning existence. And for those who’ve stolen from them………how much do get for your soul? The last thing we need is more prescription healthcare. It’s another death sentence.
For those who suffer……….boost your immune systems. The fungus eats the nutrients that would help it to regenerate itself. Purchase inexpensive diatomaceous earth (be sure it’s foodgrade). Taken daily, the metals in your body will adhere to it and it’s removed through the bowels. Rid your body of parasites. Hulda Regehr Clark’s book, A Cure for All Cancers gives an herb/tinctures 10 day cleanse – 3 items, it’s easy. Take krill oil supplement to nourish your brain to reduce the fog. Our bodies have also been robbed of potassium – a natural supplement will do……..better yet, eat a banana. Drink filtered water, avoid junk and fast food. Keep moving. These things will keep us strong. Trust your most primal instincts. You know what’s going on. Keep fighting the good fight! Peace and renewed health to us all.
I am 16 years old and I have had this problem for at least two years now. I have went to many different doctors and they all have told me that I am crazy and that it is all in my head. I don’t believe them. I know that it is real and I wish that the doctors would be able to believe everyone who tells them about it. This problem is driving me crazy and I have a dazed fog-like feeling all of the time accompanied by joint pain, vision problems such as seeing colors that aren’t there with or without my eyes open, and many other symptoms. Even when I get out of the shower, my skin breaks out in a horrible, ichy red rash with white fibers coming out of my skin. I hope that someone finds a cure for this soon and that everyone infected with this horrible problem be cured and relieved of their symptoms.
My 15 Year Itch: an Anecdote and Statistics
I know the itch. I know that feeling like something is crawling underneath your skin and if you could just dig a little deeper… if you could just draw out the small white fibers and granules maybe you could get some relief. The feeling of waking up in the middle of the night because you need a back-scratcher or the sigh of satisfaction when the itch is replaced by the dull irritation of a newly broken scab.
There was a while I feared there was some parasitic infection – not because someone put the idea in my head but because my intuitive imagination needed an explanation of the crawling and burrowing feeling.
My dermatologist diagnosed me with “some kind of dermatitis” and handed me a bottle of topical steroids (his words in quotes, not mine). I’ve tried the pine tar, the coal tar, calamine, astringents, citrus extracts – there were many sources of temporary help but none would last.
The Stats
The good news for me is that I can put a name on it and it is getting better. The condition is called “dermatitis herpetiformis,” and its an auto-immune response to a protein found in 97% of pre-packaged food. Celiac Disease is the name of the root condition, it is a body’s rejection of wheat gluten, one of the most omnipresent protein sources in our diet. The World Health Organization estimates this reaction affects 1 in 100 people – and thusly Celiac Disease is included on their list of diseases that should be screened for universally in any given population.
Are you still scratching? Consider the odds:
U Chicago estimates 1 in 100 Americans, or ~3 million people have Celiac Disease.
1 in 10 patients with Celiac Disease will present with Dermatitis Herpetiformis – an intensely itchy skin condition that results in small white granular IgA and sebum eruptions from swollen pores. That’s 300,000 Americans.
U of Chicago also estimates that only 3% of all Celiac sufferers in America have been diagnosed! For the 300,000 people itching because of gluten, 291,000 have not been diagnosed properly.
And besides the itch…
The symptoms of untreated Celiac Disease include: fatigue; brain-fog/confusion; sleeplessness; digestive problems; anxiety; paranoia; signs of malnutrition in the hair and nails and teeth; and co-morbidity rates surge with diabetes, immune arthritis, lupus, and lymphomas.
Some gluten-free food for thought.
John, I’m glad you got a diagnosis that seems accurate. Celiac disease does indeed sound like one of the many conditions that could lead someone to self-diagnose with Morgellons. That’s why it’s so important to work with a doctor (or doctors) to find out what it wrong. Obviously many of the “treatments” suggested for “Morgellons” are totally inappropriate for Celiac disease.
Actually, the doctors were completely useless for me.
I was diagnosed qualitatively with anxiety; depression; chronic fatigue; and hypochondria. I was also hospitalized twice for “dehydration and unknown stomach virus.” They offered a lot of long-term medications designed to make me feel happy, and they were intent on removing pieces of my immune system one by one (tonsils, adenoids, etc) despite the fact that not a one of them tested for any sort of immune disease.
I should have also noted that of the diagnosed 3% of the expected Celiac population, about one-third to one-half are self-diagnosed.
There’s no financial incentive. Period. The medical industry sucked tens of thousands of dollars out of my family and my insurance company, and they never offered anything more than “happy pills” and surgery to remove the most aggravated tissue of the month.
Yet there is no pharmaceutical cure, there is no surgery – only dietary modification. In two months, I started eating twice as many calories and yet I lost 50 lbs and stopped sleeping 16-18 hours a day. People I had known my whole life could hardly recognize my new appearance and attitude.
If I had just listened to the doctors, I fear that I would just be another mentally-medicated “crazy” person with a “made-up itch.”
Michael,
This is where we have a MAJOR issue in Australia, working with a doctor or doctors is just NOT happening!
I can tell you that the National Health & Medical Research Council have informed me that they acknowledge Morgellons disease as an unexplained & debilitating skin condition. However, they have examined the information currently published in peer reviewed journals and has concluded that, at present, there is insufficient evidence to enable the NHMRC to advise medical professionals and the Australian comunity. However, the NHMRC will continue to monitor the literature and may decide to issue advice when more information is available.
There is a complete break down in communication.
I am receiving no treatment, no investigations, nothing. I have tried, believe me I have tried. You just have to look at me to know there is something very wrong. As for the blue & black thorns in my tummy, I guess that isn’t enough scientific evidence of something!!
John, self-diagnosis is a very touchy subject, but it’s one that is at the root of the Morgellons problem. In your case, it seems like it has worked out well for you – and you apparently had poor treatment from the medical community.
But it’s hard to extrapolate from your case. For one, there’s no way of knowing how accurate your diagnosis is, or how many of those thousands of people who have self-diagnosed with Celiac disease actually have it. It’s difficult to diagnose without a bowel biopsy, and many people might just prefer to go on the diet. It’s also, as you know, underdiagnosed – with many cases taking 10 years from the onset of symptoms to diagnosis.
I don’t think people make up itches. But there are many possible causes. Celiac is one.
It’s not the itching. That’s just itching. It’s the biting.
I thought it was fleas from my dogs. I nearly poisoned the poor things to death and me with them. By the time someone asked me why my legs were covered with red bites and theirs weren’t, whatever the heck they are was completely immune to every pesticide obtainable in this country at that time. To get to any solution, those seeking it have to know what they are looking for. However, parasites are anathema. Look at how lepers are regarded in history. No one wants to be around one. Understandable. Thus there is a self-defensive conspiracy of secrecy. Because so few are forthcoming about what is happening to them, there is far less information available than is needed. There are also many myths that simply don’t make any sense, such as the fact that sarcoptes scabei, the parasite that causes mange in dogs and scabies in humans, is one and the same, but I have seen scholarly LOOKING articles maintain that humans could not catch mange from their dogs–though this mite also has a nickname: the human itch mite. People who deal with fictitious delusional conditions obviously have some deep-seated need to do so. God knows why. People who deal with real conditions generally want to get RID of them, and do everything they can to do so. I think that is a better criterion for determining whether something is real or not. I can’t see it if your back hurts. It must not hurt. You have a migraine. Riiiight.
When I reread “There are also many myths that simply don’t make any sense, such as the fact that sarcoptes scabei, the parasite that causes mange in dogs and scabies in humans, is one and the same, but I have seen scholarly LOOKING articles maintain that humans could not catch mange from their dogs–though this mite also has a nickname: the human itch mite. ” I realize that as written it seems as though I think the idea that this mite is the same is a myth. I intended to say the opposite. If mange in dogs and scabies in humans, both highly contagious, are caused by sarcoptes scabei, then I think it might be safe to say that they could transmit between dogs and humans. Sorry for the confusion. By the way, Michael, I may not agree with most of your premises (I do with some), your blog is gorgeous.