Jul 28 2006
Morgellons on Television
The Morgellons Research Foundation is an advocacy group. It has orchestrated the current media coverage by spoon-feeding a story to television news, both local and national. For those in the media who would like to do a similar story, I present the following 12-step method:
Step 1 - Find some Morgellons Patients. This is not difficult. Simply ask around on the Morgellons Research Foundation’s recommended Lymebusters forum. There are many people there who love to talk about their symptoms. Beware, as there are a few oddballs around, who might not quite be on message. Beware of patients with web sites that make them look obsessive, such as Anne Dill on Good Morning America, or Richard Vigil on 10News
Step 2 - V.O. - describe the symptoms of Morgellons in a scary manner, you want to hook your audience here. Note that thousands of people across the country have Morgellons, and there are hotspots of the disease in California, Texas and Florida.
Step 3 - Have the patient describe what is wrong with them, and have them show their lesions.
Step 4 - V.O. - Say these patients are being ignored by doctors, who claim it is all in their heads. It is important to set up sympathetic contrast in anticipation of step 9.
Step 5 - Zooming photos. Show photos of fibers and multi-colored fuzzballs, zoom and scroll while doing this, as it looks a lot more dramatic. Speak with a tone of amazement while describing the photos.
Step 6 - Professor Wymore soundbites - like “there’s definitely something going on“. Show Wymore in his Lab and wearing a white coat. Make it look like he’s an expert in this field. Do not mention he’s not a doctor. Do not mention he’s actually an assistant professor.
Step 7 - (Optional), show Wymore holding the letter he has written for sufferers to take to their doctors.
Step 8 - More zooming photos, this time describe how people find fibers inside their lesions. Try to make it sound impossible.
Step 9 - Find a doctor, interview him for hours, and show the line where he mentions “Delusions of Parasites“. Ignore complex terms like Neurotic Excoriations, Dermiatitis artefacta or “Case Definition“, as these cloud the issue.
Step 10 - Back to Wymore (or Ginger Savely), and have them say something to make the doctor seem silly. If it’s Savely, don’t mention she makes her living treating people who are convinced they have Morgellons.
Step 11 - A ray of hope: say that, at long last, the CDC is investigating Morgellons. Do not mention they are just investigating if there is any evidence that it exists in the first place.
Step 12 - Tie it up, cut back to your initial patient to remind the viewer of the human side of the story. V.O. about the hope they have. Make it real.
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I certainly couldn’t agree more, and yes, “make it real”. To the susceptible members of society the MRF is after, making-something-real requires nothing more than being told it is. Such innocent people don’t know what deception is, nor what it’s used for.
I have to note I wrote the above 12 steps BEFORE seeing the Today Show piece. It’s amazing how easily led the media is.
I like their extra step of warping the photos.
Atta boy, Michael. As we all know, for television, it’s all about the ratings, and nothing more. Now that they’ve gotten their foot inside the door, we’d all better just make sure we’ve got our space helmets on and we’re strapped in good and tight for the ride.
As they say, believing is seeing.
Sensationalism in the Media: When Scientists and Journalists May Be Complicit Collaborators
http://www.acponline.org/journals/ecp/julaug01/ransohoff.htm
I watched the today show and though it was very interesting. This was my first encounter with the disease and decided to spend the day researching it since work was slow. I am glad I found this site as I believe this could all be hysteria. The amount of people with this disease will probably spike after watching the today show. And reading all the articles led me to conclude that yes people may have skin problems, but the whole idea of fibers is new. And some people in some articles claim to see their “blood move” from all the worms in it and see the things coming out of them and flying away. But at the same time the guy at OSU studying these fibers says they are not a living organism. So those stories just to seem to match up. Also there were stories of doctors treating the disease with success using casts and anti psychotic medicine. I hope I do not come back to regret these words, but I do hopefully believe that morgellens disease is not real and would hope people suffering from it would at least try emotional counsoling and medicine before self diagnosing themselves with this condition. If the counsoling and medicine do work they will feel better and if it doesnt work you will be right back where you started so you do not have anything to lose. And I want to say I do not think anyone suffering from “Morgellons” is crazy or nuts. I am a compassionate man and want these people to get better but I am horrified by the idea of burning yourself with gasoline, lighter fluid, and bleach and/or that someone is taking 500$ a pop plus charging for phone time to take care of these people. I wish you all well. May peace be with you.
911
To 911. I am a retired medical entomologist and have seen many persons with delusions of parasites in my career. I alerted many of my former colleagues to this blogsite and I have put my reputation on the line that there are no living fibers yet undiscovered that are causing the physical distress of the sufferers. Like you I am angered that knowledgable persons who should know better are perpetrating and exploiting this hysteria for their own selfish purposes. I encourage you to refer others to this very informative blogsite.
First time poster here. I enjoy this website and think the author is approaching it in a good faith basis though I disagree with some of his conclusions. I’ve been following the Morgellons story closely as a medical mystery. My wish would be to prove the disease as a fantasy, since I want there to be as few scary medical conditions to worry about as possible.
But the thing that keeps me from dismissing this story is the fact that I’ve read several cases involving very reputable FAMILIES who claim to be infected with this disease. I’m talking husbands, wives and/or children. It’s easy for me to dismiss single individuals as suffering delusions of parasites, but more difficult for me to do so in cases of couples, particularly successful couples who have seen their lives disrupted.
Exhibit A: Billy Koch, wife and their 3 kids.
http://www.rense.com/general72/horr.htm
Koch was a GREAT pitcher, and major league pitchers nowadays pitch into their 40s. He should be making $ 10 million a year right now. Instead, he’s out of baseball, and he and his wife say they and their kids have caught this disease that causes these particals to ooze out of sores. I guess you can speculate that he went nuts, but did his wife and kids do so as well? I find that very hard to believe.
Exhibit B: Georgia pediatrician Greg Smith and his wife.
http://www.morgellons.org/contrib.html
He claims that he and his wife have this condition and he’s tested positive for the Lyme bacterium (borreolosis), as have many other Morgellons patients (how is THAT explained by delusions of parasites?). He thinks he and his wife were both bitten by insects and got the disease that way. I think a medical doctor’s views on his condition are entitled to substantial weight and his view seems rational.
I fully agree that the Art Bell conspiracy crowd has caught hold of this phenomenon and that there is a large supply of nutcases for this website to mock. But I simply can not dismiss cases like that of the Kochs and the Georgia doctor and his wife. I think the author of this site is throwing out the baby with the bath water, so to speak.
I think that we’ve got a real illness on our hands, and I suspect that the Lyme bacteria has found a new way other than ticks to infect human beings. I’ve read numerous stories of people thinking that insect bites (one man claimed to get it after a bedbug attack) gave them this condition, and this may well be the case. I don’t think this is just a progression of regular Lyme disease, otherwise you’d expect to see the clusters concentrated in the northeastern US where Lyme disease is endemic.
If anyone claims to be confident this disease is a fantasy, I would challenge them to go live with the Koch family for a couple of weeks. Can anyone honestly say they would do so without concern? if so, I would submit they are not very smart.
A family can be good, reasonable people, and still share a mistake in certain matters. In more extreme cases there can be a Folie a Famille. (I’m not pointing any fingers there, just noting that it exists).
A bit of a stretch, but even assuming that’s the case here, how does the “folie a familie” explain the positive borreolosis (Lyme bacterium) tests?
Hint: it doesn’t.
The positive Lyme tests might mean they have Lyme disease, or they could be false positives from an inaccurate testing method.
Either way, Lyme is not the issue here. If they are sick with Lyme, that’s one thing. The real issue is: do these families have fibers emerging from their skin? Does anyone have fibers emerging from their skin?
Billy Koch must be reasonably well off, probably the Doctor is too. What’s the problem in getting some clinical evidence from his family? Evidence of fibers emerging from skin?
Robert, all your doing is pointing at the most belivable examples out of the large sample of varied people who claim to have Morgellons. However, the quality of the their evidence seems no better than the most deluded person on Lymebusters.
There is a logical flaw in your analysis. If one person in the world has this Morgellons disease then it is a real disease. The fact that there may be hundreds of nutcases and attention seekers looking to piggy back on their real condition is irrelevant.
I readily admitted that I agree that many if not most of those who claim to have Morgellons are delusional. But I asked you to look at two examples, and you agreed that they were the “most believable.” Fine. Then take these peoples’ cases on their merits in deciding whether Morgellons exists and don’t bring up the obvious nutcases complaining of sock lint or chemtrails.
Your repeated comment is: where is the videotape of fibers emerging from skin? That’s a reasonable question, and I myself want to see such evidence before deciding that Morgellons exists at all. But unless you can give me evidence that the Kochs or the Georgia family were asked to submit to such testing and refused, or that they did so and no fibers emerged, then that only proves that this particular test hasn’t been carried out. Which is hardly considering since reputable medical doctors don’t want to touch this disease for fear of being associated with quackery.
Besides, you’re the only person I’ve seen repeatedly bring up this “where’s the videotape?” point, valid though it may be. It’s not like there’s a big outcry among the public for video evidence.
Billy Koch may have Lyme Disease, but it’s impossible for him to have Morgellons. There is not such thing as Morgellons. No one argues that he isn’t sick, and he can really be sick, and still really be delusional. Everyone needs to study about how the Morgellons Myth began in the first place.
High quality microscopic video cameras are not easy to come by. Ever tried to focus a microscope on something moving?
There is not a big outcry for any kind of evidence. I’m just pointing out the evidence that would be most believable.
Okay, let’s take the Kochs on their own merits. The whole family is supposedly sick. Now Billy Koch is a moderately famous guy. Rich too, he earned about $15 Million in 1999-2004. Consider the facts we know:
Fact: Brandi Koch describes her symptoms as “matter and black specks” that ” literally ooze out of my skin”, and Billy said “I’m not seeing things. I’m watching it happen. ”
Fact: They have been to several doctors, who have told them it’s a delusion.
Fact: The toronto sun describes Billy as “superflake” and ” they’re still calling Billy Koch crazy; it’s just that now they’re much more polite about it.”
Fact: Brandi is a member of the board of directors of the MRF.
Now, I’m not asking Brandi Koch to show ME evidence. But given that they have millions of dollars, what would it cost for them to get enough evidence to convince a doctor? Obviously they cannot produce any evidence, as the doctors continue to say they are deluded.
I feel it’s most likely that Brandi “got” the disease first, and then Billy got it as his career tumbled (backdating it, after he realized the cause of his poor performance). Since it’s communicable, then obviously the kids had to get it too.
There is no recognition in the medical establishment that this disease even exists. Moreover, doctors guard their reputations and careers so jealously that there’s no point in advocating the existence of a disease not yet proven to exist. I don’t dispute that. If I had gone through all the work required to be a doctor, I’d be very reluctant to stick my neck out as well. That being the case, I’m not at all surprised that Koch hasn’t found medical support in the Bay Area or anywhere else. A doctor coming out in support of Morgellons is pretty close to career suicide. But then, long ago it was career suicide to argue that invisible germs caused infection.
I’ve repeatedly seen in my life how doctors are very often flat-out wrong. On more than one occasion I’ve diagnosed medical conditions in my family through internet research before the doctors were able to do so. So I don’t just genuflect in front of almighty doctors- I’ve got a science background and feel completely capable of reaching my own conclusions.
And to reiterate, I haven’t concluded that Morgellons definitely exists by any means. But it seems to me like this website likes to pick the low-hanging fruit and make fun of the nuttiest examples of delusional people out there. And nothing in your discussion of the Koches persuades me that there situation is unworthy of being taken seriously. Which the medical profession has not done to date.
I take the Kochs case very seriously. They are ill, and they have something wrong with them. The question is, what?
Clearly their doctors would be highly motivated to find out what is wrong with them. They do not need to jump onto the “Morgellons” bandwagon to do this.
The only reason these multiple doctors would have for repeatedly telling the Kochs that there were NOT fibers and tar coming out of their skin would be that they have not been able to observe it.
Do you think these highly paid doctors see fibers and tar “literally oozing” out of Brandi’s skin, and think “that looks like Morgellons, I’d better pretend I can’t see it!”
Here’s all I ask of the medical profession in relation to Morgellons. Take 10-15 of the seemingly most credible cases of Morgellons. Offer to send the affected to a controlled location where they can be monitored for 7 days, non-stop. Have them undress and search them for any fibers. Observe them during those 7 days constantly by video, and see if any fibers emerge. If they do, videotape them and then send the fibers for the most reputable analysis available with current technology.
Now, the PATIENTS can’t have such reliable testing done themselves, yet you and other want to blame THEM for that fact. When we should be blaming the doctors who are supposed to have intellectual curiosity about phenomena effecting public health.
A new disease can only be proven or disproven by doctors. If some day I hear about seemingly credible Morgellons patients such as the Koches REFUSING to undergo such medical testing then I will enthusiasticly switch over to the skeptics category. I will conclude they have something to hide. But everything I see says that these people are literally begging to be taken seriously and are willing to submit to any testing the medical profession would have them undergo. The Georgia doctor I referenced earlier was quoted as saying “it only took [the CDC] five years” to start a formal investigation. Doesn’t sound like someone with something to hide to me.
And I don’t accept the judgment of doctors who, until the recent CDC action, have apparently been too lazy or uncurious to offer to perform the kind of reliable testing which would DISPROVE the existence of this disease which seemingly credible people are alleging exists.
I fully expect that I will accept the CDC judgment on this phenomenon, whatever it is. But the medical profession has done nothing to seriously address it to date, and so there is no refutation of these seemingly credible reports.
Greta said:
Since people claim to see them with the naked eye, then how high quality does this have to be?
The Epidemascope would do the job, at about $800. It seems to have solved the problem of focussing, etc.
http://www.epidermascope.com/index.htm
Not too cheap - but surely Billy Koch could afford one. Maybe the MRF could buy one?
There are lots of ways of getting the evidence. The problem is there is no real evidence being presented, and yet there are claims of a new disease that is making some people make inappropiate health choices.
Robert, sounds like a reasonable experiment, but kind of expensive, as they would basically have to be put in a totally clean environment, and be totally isolated. Very very difficult to do that properly. Very expensive, and nearly impossible to achieve a level of certainty of no contamination. Plus you really need four groups, morg/non-morg and both groups inside and outside.
There is a much easier way. Take ten Morgellons sufferers, and ten people who suffer from conscious Neurotic Excoriations, who have a similar level of lesions. Have a neutral dermotologist examine all twenty people, and see who has fibers in their lesions. See if there is a statistically significant difference in the fibers/lesion ratio.
Here’s an experiment you can try at home. Take a post-it pad, cleanly clip off the sticky part. Tape it to your arm, sticky side out. Go about your business for 8 hours, then examine the pad. No fibers? Try 24 hours.
The CDC has known for a long time, that there is no such thing as Morgellons Disease. The present investigation is being conducted because of the recent hysteria, although the CDC is aware of the fact that these people are delusional. This does not necessarily mean that these people don’t have real physical illnesses, and it doesn’t necessarily mean that they are “seeing” things that aren’t there. They are, however, grossly misinterpreting what they see.
Robert said, “If anyone claims to be confident this disease is a fantasy, I would challenge them to go live with the Koch family for a couple of weeks. Can anyone honestly say they would do so without concern? if so, I would submit they are not very smart.”
Oh, I’m 100% confident, Robert, and can honestly say I’d do it without concern, but I don’t think that challenge of yours is too realistic. Maybe see if you can set me up for a visit? Hehe.
This article on Morgellons just came out on time.com, featuring Dr. Smith from Georgia.
http://www.time.com/time/health/article/0,8599,1220349,00.html
I have to admit, the following statement:
Shine a black light on these fibers and they’ll fluoresce blue, he says, just like something you’d see in The Twilight Zone. He describes looking into the mirror one night, only to see one burrow down into his eye.
- end quote -
does tend to push me more into the camp of people who think this is psychological. Assuming these fibers are a real condition, I certainly don’t think they have the ability to “burrown down” into someone’s eye. We’ll see, but score one for the doubters AFAIC.
I’ll take that “come stay with a Morgie” challenge. Assuming someone else is paying for my time off work and my air fare. Also, I need a second trusted party with me, because only an idiot goes off solo to spend even a single night with a complete stranger.
Otherwise, no problem. I would very much like my host to be near to cultural or art museums, so I am not bored to death.
Bring it on.
Austin, Texas has loads of museums. Austin is also evidently a Morgellons hotspot. Shall I start packing?
Wow. You people have it all wrong. Basing your blog entries and opinions on secondhand commetary from support blogs or news stories that have had hours of footage that were cut for time, or a letter that was simply aimed at making sure all people are treated with compassion is completely non-scientific. I agree with the idea that there may be people who do not have morgellons who will latch on to this disgnosis. I work in an ER, and if we see on the news that there has been an outbreak of West Nile virus, we all think “oh crap” because we know for the next couple weeks every person with a headache will be coming through the ER saying they have morgellons. Don’t even try to throw “but that’s exactly what the morgellons patients are doing” into this argument- the first morgellons reported symptoms years before they saw any media coverage. No one is getting the whole story and that is what is causing the communication problems. There ARE people with morgellons- are there 4500? I don’t know, but even if ONE person had this disease, you’re doing them a disservice with the snide, nasty remarks from people who are neither doctors nor scientists. And for those of you who believe you never had morgellons because you’re cured now- it may just mean you’re cured. I seriously worry about you pushing the people who are so desperate for answers to commit suicide. I don’t know the legality of it, but I think you may be liable for that. Even if you’re not, I can not WAIT until the day that you are proven completely and totally wrong and you all look like closed-minded, uncaring individuals. This is my first and only reply. I will not dignify this with any other response.
Jac, shall I start packing?
Jac, before you blame this blog for harming people, go have a peek at Lymebusters. They ARE believers, and they’ve got everyone eating horse wormer. No one here is telling people to pour bleach on their lesions, or eat vet medicine.
Now, I’m still looking for the Go Live With a Morgie Challenge. Bring it on.
Just wanted to clarify- in the sentence aboutt people with headches during a West is come in saying they have West Nile. Sorry
Ivermectin.
Sulfar.
Colloidal Silver.
Horse Wormer.
Ammonia.
You name it, “Morgies” are being encouraged to use it.
But not here.
Jace, I don’t believe you have worked in an ER for 5 minutes. If you had, you’d be more freaked out about people bathing their children in bleach and mutilating their genitals with tweezers looking for ‘fibers’. A competant ER professional would not be looking for that ONE person who might have something called “Morgellons”.
A competant ER professional would be too busy dealing with real emergencies, and passing the people who think they’ve dug a worm out of their arm onto appropriate care physicians.
The ER is the ER. That’s where people come to live or die. *IF* you have spent an hour in an ER, then you know that any ER that has seen a “Morgie” has passed it on.
Don’t bullshit me.
Okay, I’m going to respond to Jeez’s statement. I never said that I thought Lymebusters was any better. I am appalled at some of the “treatments” they suggest. What needs to happen is a board that can be moderated to be a middle ground between “There is absolutely no such thing as morgellons” (this board) And “there is morgellons” and it’s caused by insects, worms, parasites, bacteria, etc and you can bathe in bleach and do some of the other really awful things people are doing to themselves that may cause them harm in the future. But they DO support each other, and people need that- not this hideous browbeating. There is no true support group for everyone, and I think this is something that is greatly needed. Oh, BTW the cattle wormer is approved for human consumption, just not for this particular reason.
I think this could be very dangerous if it is a real disease. But I base my beleifs on the evendence from a popular mechanics article that can be found on wikipedia’s enyry about morgellens in which it was state that the so called “fibers” did not become a symptom until it was posted on the internet, thus making it a new symptom. And ask yourself, what kind of mother (Mary Leito) takes the skin off their children and obsessives over fibers under a microscope. And a worm is burrowing into a mans eyeball when it has already been established that these “fibers” are not living organisms. There are many holes in the stories of people with the condition and the research already done at OSU. If holes are showing up this early than I think we have reason to wonder what is going on with Morgellons. I think we are looking at the first phenomanon of a disease spreading over the internet. I wish those with this condition would accept pschological treatment and/or counsoling rather than searching for a physical cause. Psychology is a science, one that I have a degree in, and trust me the mind can play many tricks. Also, people may have legitimate disease and may be being sucked into what they see on the internet.
Jace, you have evidently not read this blog with an open mind. Over and over and over, it has been said here that we believe “Morgies” do have something going on, we believe they do have health issues that are quite distressing and require treatment. Michael, over and over and over, patiently encourages these people to take a look at what ELSE they might have and is forever suggesting they see a doctor.
I absolutely believe the “Morgies” are suffering. I just do not believe there is such a thing as Morgellons Disease, and I think that MRF and Lymebusters are injuring these people.
I went to the doctors about these fibers way before learning - on the internet - about other people experiencing the same thing.
There is absolutely no such thing as Morgellons. That’s a fact!!
Jace said
Jace, I base my blog entries on all the information available to me. If someone wants to point out some error, or some factual post from Lymebusters I missed, or tell me what might have been on the extra hours of CNN footage, then they are free to do so.
Travis Wilson took an overdose before my blog came about. I’m not sure what I’m posting now would have affected him either way, but some people are going to die like him, regardless of what I do.
I argue that people should get appropriate medical care. That they should work with their doctors to see what is wrong with them. That their fibers might just be clothing fibers. That they might not have an incurable alien disease, but perhaps some combination of known treatable diseases. That they should base their decisions on science and reason. You say this make me liable for some future suicides?
I understand you have compassion for these people, and don’t want to see them hurt. However, their long term health interests are not met by avoiding certain painful problems with their current beliefs.
Greta,
Have you ever been to counsoling or tried medication. I am not trying to deny your experiences, I am just curious. And also, if you do not feel like answering that question I totally understand and respect your privacy.
I am just worried that people are throwing out the idea of this being a psychological problem thinking that psychology is not as legitimate as “real” pathological problems when it is a science that has been proven, while also being new in scientific terms, just like the science of medicine which goes back centuries and I think people are quick to look at it since it is what we have been conditioned to accept and psychology is just a science/diagnosis for crazy people.
Greta, I believe you are ill. I believe that you find fibers in your lesions. I do not believe that MRF can help you.
Jace said…
“There is no true support group for everyone, and I think this is something that is greatly needed.”
Tall Cotton said…
Why don’t you go start one?
My medical doctor is a psychiatrist. He says this in not in my head, it is in my skin. Neither of us believe MRF will help me. My doctor is doing his own research on the cause of the fibers growing in me. They are found where there is no broken or damaged skin. He has no reason to believe that this is a disease just because I have fibers growing in me. He is having several tests done on the fibers within the next couple of weeks (x-ray spectrometry, scanning electron microscopy, and transmission electron microscopy). He is funding all the testing out of his own pocket. He has not charged me a penny for any of the 50+ appointments I have had with him.
He does treat me with medication. Namely Doxycycline.
Greta,
Please let us know what the results of tests are. I would be interested in hearing what they show. It sounds interesting and that is great he is helping you out that way. Hope you feel better.
Yes, and people have done that for years and years, Greta. We didn’t used to have the internet, back then, to unite them.
Okay, time to shut down the blog, Michael. Jace says we have it all wrong. Jace, when did you first hear of “morgellons disease”, and how familiar are you with its symptoms and its so-called victims? You’re a mixed up person if I’ve ever heard one, with your accusations of anyone here being uncaring. There is nothing but good in pointing out that there is no such thing as “morgellons disease”. People have VALID health problems that cause them to have skin manifestations they can’t get a handle on. We’re not close-minded on this blog, and regardless of the opinions of any who think we are, that serves to show what type of minds are working inside of your heads. These people are sick and they do have strange things, that they can’t understand, happening to them. This myth is standing in their way, completely, messing up their thinking even further than it was to begin with.
“# Michael Says:
July 29th, 2006 at 6:13 pm
Greta said:
High quality microscopic video cameras are not easy to come by. Ever tried to focus a microscope on something moving?
Since people claim to see them with the naked eye, then how high quality does this have to be?
The Epidemascope would do the job, at about $800. It seems to have solved the problem of focussing, etc.
http://www.epidermascope.com/index.htm
Not too cheap - but surely Billy Koch could afford one. Maybe the MRF could buy one?
There are lots of ways of getting the evidence. The problem is there is no real evidence being presented, and yet there are claims of a new disease that is making some people make inappropiate health choices.”
I checked out the epidermascope - its purpose as video is to show live images, not to show moving images. There is no evidence that this video microscope could focus on a moving object. Nothing in its literature indicates it has such capability.
Smileykins, I do not follow your last comment to me. People have done what for years and years?
Greta. Your psychiatrist is treating you with doxycycline, you’ve said, and the fibers go away. You said that when the docycline is stopped, the fibers return. You need to be tested, to see what is causing you to have the recurrrent infection. Does that sound reasonable to you?
Had fibers in their skin and thought they were infested with something.
Jace said…
“There is no true support group for everyone, and I think this is something that is greatly needed.”
Hell, yeah!!! YOU TRY IT. We’ve both been there, if you want a taste of it, go for it!!!!
Just making sure my little pretties are behaving over here…..
Is Michael in the house tonight? I wanted to paste a
semi-dirty joke (really is cute and funny) and thought I’d be nice for once and ask……
It;s health issues related….viagra!!! Can I, Can I????
I did not say the fibers go away on doxycycline, they do drastically reduce in number. On the doxy the fibers are not “everywhere,” like when I am off the doxy. The doxy is not a cure, just a treatment to make life bearable - almost normal.
Sometimes I do not clearly express what I mean. I apologize if I implied that the fibers went away on the doxy, I did not mean to.
Smileykins:
What exactly would I be tested for anyway?
I get regular blood tests for a ton of factors. The ONLY abnormal finding is my Tumor Necrosis Factor alpha level, which has continued to be elevated.
Greta - The camera can braced against the skin, so it moves with it. Focusing distance is set to the skin, and there is obviously sufficient depth of field to show hairs, so emerging fiber would show up too.
But really, I imagine any video camera with a macro lense would work. Heck you could even rig up a normal camera with a large magnifying glass - since the fibers are visible to the nakedeye.
When I first went to the doctors about this, I told them that I had fiberglass in my skin, because that is what I felt it was.
If I had a video camera, I would try this.
The Morgies believe they have a systemic infectious disease of unknown etiology. They believe that it is one that kills. Nothing could be farther from the truth, and this delusion does not need to be reinforced in their minds.
Greta, why do you think it is not fiberglass?
I was speaking of the Mythical Morgellons. These people have a variety of diseases, and some of them may be deadly. That’s why they need to listen to their doctors. There is no Morgellons, however, and there is no “Fiber Disease”. Hysteria is being spread via the internet, and everything is being blamed on Morgellons.
Well since I’m being ignored, that must mean a yes. So, here goes….Michael, I know you are on line so you can erase if
it bothers you…
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In Pharmacology, all drugs have two names, a trade name and generic name. For example, Amoxil is also call Amoxicillin and Advil is also called Ibuprofen.
The FDA has been looking for a generic name for Viagra. After careful consideration by a team of government experts, it recently announced that it has settled on the generic name of Mycoxafloppin. Also considered were Mycoxafailin, Mydixadrupin, Mydixarizin, Dixafix, and of course, Ibepokin.
Pfizer Corp. announced today that Viagra will soon be available in liquid form, and will be marketed by Pepsi Cola as a power beverage suitable for use as a mixer. It will now be possible for a man to literally pour himself a stiff one. Obviously we can no longer call this a soft drink, and it gives new meaning to the names of “cocktails”, “highballs” and just a good old-fashioned “stiff drink”. Pepsi will market the new concoction by the name of: MOUNT & DO.
Thought for the day: There is more money being spent on breast implants and Viagra today than on Alzheimer’s research. This means that by 2040, there should be a large elderly population with perky boobs and huge erections and absolutely no recollection of what to do with them.
If you don’t send this to five old friends right away there will be five fewer people laughing in the world.
Now, that’s funny!!!!!!!!!
London!!! Good to see ya back here!! How ya doin’? I remember that joke. Good one.
Greta, hehe, we’ve got two conversations (at least, I think it’s just two), going on simultaneously. No, you expressed yourself very well, I didn’t “read” well. By the time I post a comment, I’ve forgotten the details of what I’ve previously read sometimes. I apologize. You’ll be old too, someday. Hahahaha!!
I do not think it is fiberglass because I do not have any inflammatory response to it being in my skin.
No local forgien body inflammatory response.
Elvated TNF could be a sign of an autoimmune disease (Psoriasis). I know with crohn’s disease (which I have) they use remicade to take care of the inflammatory process of crohns. They also use it to treat psoriasis. Have you ever take something for psorisis?
Greetings,
Thanks for the links. I have a few questions:
[a]Academics (as I know them) jump at the chance to discover and classify something new. As far as new discoveries go - this “Morgellons Disease” should be easy to prove. What is causing the hold up? Greta’s doctor’s responce is what I would expect from a scientist … surely Greta’s doctor isn’t the first to put some time & money into finding out what is going on?
[b]Is this disease unique to America? Have their been any cases been reported in Europe, Asia or Africa? If not, why not?
I’m not a judgemental monkey and I’m slow to assume, so I’ll keep reading.
MM.
Greta, you said on May 22:
How would you describe your problems now?
Michael: Great site! As the topic at-hand is “Michael on Television,” I’m surprised you made no mention of last week’s Nova special on this stuff.
As a doctor (not to mention a man of intelligence and reason) I imagine you’re already familiar. All the same, I just wanted to give you a heads-up, because when the Morgis discover the revelation that scientists are working tirelessly even now as I write this to prove that our bodies … the world … the universe … indeed, perhaps our very souls are comprised entirely of FIBERS!
Hi Monkey, and, you’re welcome. Yeah, unfortunately, thanks to the internet, people who had a problem that they couldn’t understand, identified with the MRF web site that woman began a few years ago. According to the way it’s stated on her site, 95% of them had been diagnosed as having delusions of parasitosis, but wouldn’t accept their diagnoses. On the average they’ve seen anywhere from 10-40 doctors. I presume that many already had microscopes of their own, but when people contact her, she instructs them to buy microscopes, as well as ultra-violet lamps to help in the “research” of her disease. She gives them the names, addresses and phone numbers to contact their local government officials and health agencies, too, from what I have read from some of the morgie people’s accounts.
Among a variety of issues, a lot of them, probably most, have obsessive-compulsive disorder. Of course, under her set of instructions, it’s encouraged. Foreign bodies, immune reactions, and dead cellular components exit these people and spill into their environments. They have to launch into a neverending cleaning tangent, as a result. Fear of contagion is a big issue with some. Many things are discarded, as well as set fire to, and homes are even moved out of. However, “it” follows them, of course. Many of their lives are destroyed, and even lost, all due to this “morgellons disease”, they think.
Yes, they’re quite ill, for various reasons, but rather than following their doctor’s guidance, they think the medical community is living in the dark ages. They have a lot of misconceptions about many things. Since their “specimens”, that they post on the web, all resemble those from other people who think they have it, that makes it real to them. Their stories are too much alike for it to not be a real disease, like Mary Leitao convinced them it is. They were sure they had something really bad going on, before they found her web site. She saved them all, by giving it a name, and that’s how we got here, today.
It’s well known that the skin is the first line of defense against all elements, such as microorganisms, wind and pollutants. It’s the acid mantle, a fine film with a slightly acidic pH on the surface of the skin, which provides a protection for the skin. It plays a very important role as an integral part of the barrier function of the stratum corneum.
Aside from bathing the surface layer of our skin in a protective invisible shield, its ability to break down proteins, which is what causes our dead skin cells to shed, is also an important matter of whether or not we have healthy, functioning, skin. I’m just talking about the very basics. There exists a big problem within the acid mantle properties and the stratum corneum of everyone who thinks they have “morgellons disease”, and, for various reasons.
The use of detergents and cleansing products, as well as the application of lotions and oils, disrupts its ability to perform its job. Its functionality is also dependent on endogenous factors, that are unrelated to pathological features, such as racial differences, topographical variation, gender differences, developmental and age-related changes. I’m just talking about the very basics.
I know there are many morgies that have stripped it away, entirely, and that they keep it that way. They have to be some of the worst sufferers. I also know that many have an excess layer of invisible film covering them, and that some are forever slathering more oils onto themselves, keeping their skin saturated. They’re trapping internal toxins, as well as external elements, like the fibers, within their skin. The stratum corneum of our epidermis is composed of 25 to 35 sublayers that are extremely thin. I found that I offended morgies when I posted any information on it, or on general health measures and diet and exercise. By the way, here, in the US, most of the soaps on the market are too alkaline. Only low ph products are good for our skin.
Of course, I’m only talking about the very basic problem of some people. I know that people who think they have “morgellons disease” have a wide range of health issues, from minor to major, aside from having fibers embedded within the invisible layers of their epidermis. However, one small problem can develop into a larger one. Sadly, especially with this set of patients, it’s too often the case.
A Quote from a person on a morgie message board:
“I need to like remove layers upon layers of dead skin and whatever that has accumulated since the onset. I think I need to be a bit more patient, even though it’s already been a couple years!?!”
911, I know psoriasis is at play with some of these people. I used to try recommending that some of them use shampoos for seborrhea and psoriasis to help get the layer of crud removed. I could never reason anything to anyone in all the months that I tried. They get mad easily, anyway.
Oversight…. I think I said, one too many times, “I’m just talking about the very basics.” Hahahaha!!!
Some morgies do know about String Theory!! Of course, I’m just talking about the very basics. (Hehehe. Okay, time to put my drip back in. Ha.)
One more question: If all these people have a true disease (which you say you believe)that causes such horrible health effects- how come their family practice doctors are not treating them for whatever “it” is? If they have true, identifiable diseases as you claim, why has not ONE of them gotten a diagnosis? Is every doctor incompetent? Even if the PATIENT wants to obsess about the fibers a good physician would look past that to find an organic cause for their problems. You’re reasoning just doesn’t make sense to me “yes, these people have true diseases that they need help for” and yet no doctors are treating them for “real” diseases-they’re sending them out the door with a DOP diagnosis. Please explain this to me. And there is no further need to attack me, I know I’m not welcome here. I just don’t understand your logic on this and would appreciate an explanation that covers how your belief that these people have real diagnosable diseases fits in a world where these same people are sent home with antipsychotics.
Jace, you’re welcome here, but I’ll ask you to just step back a second, and review your comments and see just how you came in. It’s going to take a lot of reading here to have your questions explained, but they’re all covered. To sum it up quickly, if morgie people listened to their physician’s diagnoses and took the prescribed medications and referrals, they could sort things out, possibly, and move forward to addressing their many health conditions. This is an extremely delicate situation, with many intricate facets to it. One can’t get to step C, from point A, by avoiding step B. Frankly, in my opinion, whether it’s their state of mind, alone, or whether they’ve always been naive about how the health care system operates, all of these people are in desperate need of some form ofa health advocate to guide them, and do all their doctor-patient communciations
Jace, how long have you had what you think is “morgellons disease”, or known of someone else who thinks they have it?
Jace, you are indeed welcome here, as you ask reasonable questions that contribute to the discussion.
There seems to be an assumption that people are breaking out with lesions and discovering fibers in them, then going to the doctor, only to have the doctor pronounce them insane.
That’s simply not the case. If you read the many accounts of people who think they have Morgellons, then you see time and again that most of them start going to a doctor and getting a diagnosis of some real problem such as eczema, atopic dermatitis, allergies, scabies or stress (and MANY others).
Such problems do not always respond well to treatment, and some things are difficult to diagnose. Either way, the treatment does not always quickly fix the symptoms.
At some point, fibers and Morgellons are discovered. Here there are great variety of possible paths a patient may go down. The doctor will probably continue to diagnose the patient based on the symptoms. Fibers in lesions indicate nothing at all, so there is no reason to change the diagnosis because of fibers in lesions. However, you’ve seen how SOME patients get very insistent that fibers are jumping around in and out of their skin. But they can never demonstrate this to their doctor. Depending on the patient, the doctor may recommend some psychiatric help.
If the patient ends up going to doctor after doctor (often tens of doctors in a few years), they may eventually start getting a quicker diagnosis of mental problems based on their history, especially if the new doctor is a referral who speaks to the previous doctor.
If twenty doctors all agree on your diagnosis, then maybe you need to take a step back, and reconsider your insistence that the fibers are somehow connected to your health. Reexamine your own evidence.
I am the same, expect I do have a few fibers from my hands, arms, back, and digestive tract. Sometimes, when a bunch of long fibers come out of my vaginal area, I feel sick (but only as a result of finding them when I wipe).
My primary care doctor sent me to the psychiatrist without examining me. My psychiatrist diagnosed me with morgellons. He does not know if it is a disease, just that I am infested with fibers. He does not believe the fibers kill. He does not think being infested with fibers is a big deal. He is trying to figure out the cause of the fibers growing in me so he can find a cure.
BTW… Jace, there are reports of this condition from all over the planet.
I have never had any symptoms of psoriosis or chrons, no have never been treated for such.
Greta, I’m sure your psychiatrist is doing what he feels is best for you.
Your experience is very interesting, but does not really provide much in the way of evidence for the existence of Morgellons as a distinct disease with fibers. Your symptoms stopped when your acne (conglobata?) cleared up. You had six different fibers analysed at great expense, and they turned out to be wool and cotton. You now find a few fibers here and there on your body, as would anyone who looked hard enough.
I’m glad you are healthy, and I hope you continue to improve.
My symptoms did not and have not stopped. I did not and do not have acne. The fibers are growing in my skin. Not found just on my skin. So can I. I can feel them. My doctor finds them too, in and under my skin, not just on my skin.
There were more than six fibers which were visually identified as wool, cotton, and polyester. This is not conclusive evidence that this is what they are. Our eyes see what they already know. If these were cotton, wool, and polyester fibers in my skin, I would develop a local inflammatory response to such fibers. I have not.
ps i never ever ever said morgellons was a disease.
Robert says: “I’ve repeatedly seen in my life how doctors are very often flat-out wrong. On more than one occasion I’ve diagnosed medical conditions in my family through internet research before the doctors were able to do so. So I don’t just genuflect in front of almighty doctors- I’ve got a science background and feel completely capable of reaching my own conclusions.”
With the amount of information available to the average patient via the internet and other sources, it is (in my opinion) irresponsible for an individual to go to a doctor and expect that he/she is going to have all the answers at their finger tips (even if you argue “hey, that’s their job”), especially when a lot of different health conditions present themselves in similar ways. That’s why additional testing is so often needed to get an exact diagnosis, and specialists become involved, etc. An informed patient will take what their physician(s) say, do some of their own research, seek a second opinion if necessary, etc. This is all part of the treatment process and the doctor/patient must work as a team if there will be success (and this might be as simple was taking a prescribed medication on the part of the patient, though in the case of Morgellon’s, it hasn’t been that simple).
It’s absolutely true that doctors are not always right. How can anyone in any profession be “always right?” However, medical doctors do have much more experience than your average joe who did some research on the internet and becomes convinced they have this or that disease based on their symptoms (which in some cases are imagined or misinterpreted). Their opinions cannot be dismissed by saying “doctors are sometimes flat-out wrong, so I’m going to douse myself in bleach.” I exagerate for effect here, of course.
Here’s a little example of where “self-diagnosis” can go wrong, based on lack of experience but not lack of intelligence. My dog is about 14 years old and a couple of years ago the skin around his scull became very tight and sunken, as if the muscles and tissue “holding it up” were disappearing. Being the internet junkie that I am, I of course researched what I thought I was seeing on the internet and came up with what appeared to be a very clear cut diagnosis. I also took him to the vet and explained what I thought it was and she shook her head immediately and said, no, it’s probably not that because if it was it would be much more pronounced. She said it could be an abcessed tooth which made no sense at all to me based on the appearance of his head. I was really very convinced I was right and continued to believe I was right even after she sent us home with the bill and if I recall correctly, some anti-inflamatory meds. My husband was also convinced I was right, based on his own research. However, we followed the prescribed treatment with no improvement in my dog’s appearance. This was over the course of a few months, and when people questioned me about it I’d tell them he had “blah blah blah” without even mentioning that the vet had said it was something entirely different. Finally, my dog started having some problems with his jaw (which I was convinced was caused by his “condition” that I thought he had) and again, I took him to the vet. She insisted it was probably an abcessed tooth but since he didn’t seem to be in pain and since she couldn’t really see anything when she examined him, she didn’t do anything else and no more meds were prescribed.
Later that very same afternoon my dog got what appeared to be a growth or large swelling on the side of his mouth. Took him right back to the vet and guess what? It was an abcessed tooth. It was removed and we saw almost immediate improvement in both his jaw trouble and the “sinking scull issue”. Now he is perfectly normal looking with no further symptoms.
I am sure that sometimes my vet is wrong. I am also sure that sometimes my doctor is wrong. Furthermore, I also feel capable of doing my own research and forming my own opinions which I will quite readily share with a health professional when necessary. However, intelligent though I know I am, I also understand that I lack the experience of someone who has in many cases years of professional, clinical experience (as opposed to book knowledge). It doesn’t mean that I’m going to take everything they say as infallible, but I’m also not arrogant enough to assume they don’t know what they’re talking about just because I did some internet research.
ooops the “so can I” was misplaced.
You didn’t have acne, just symptoms that people thought were acne?
Thank you for saying that I’m welcome here, and I’m glad that I’m able to ask pertinent questions. This is, however, the last time I will post here. Michael- you know who I am. Think about it. I can’t answer your questions because of who I am and what I do. I can tell you that I do not have morgellons (or any skin disorder for that matter), nor do I have any friends or family members that do. I come at this from an entirely different perspective. I am very disappointed in the media right now, because some of the evidence that you want to see HAS been shot, it just hasn’t been aired. I truly believe that time will tell.
Jace, I look forward to seeing that evidence, but why can’t the MRF post it on their web site? They have a few thousand bucks, what do they spend it on?
I don’t know exactly who you are, but that’s not important. Feel free to point out any mistakes you find on the site.
Question:
Where did the whole idea of getting this from French Bottled water come from?
Also, TNF levals can be and usually are higher in people with psoriasis. I would look into that.
From the CIA
http://morgellonswatch.wordpress.com/2006/05/04/schwartz-cia-france-bottled-water/
I wont be back. I’m back. I won’t be back. I’m back. I won’t be back. I’m back. Sounds like a typical Morgie to me.
It’s your decision, and naturally, if you’re getting health care for free, I would do it also, Greta…if I were you. When I’d first read a comment by you, it seems that when you’d mentioned your doctor, you’d said that he was looking for fibers on all of his patients and family members. I may be mistaken, of course, and correct me if I misread that. I’d also thought that he didn’t find any fibers on anyone, but himself, aside from you.
I think that you may have said that you don’t believe in “morgellons disease”. Correct me if I misread that as well. I’ve been reading a lot, and I do make mistakes. Also, did you say that your doctor doesn’t believe in it, as far as it being “a disease”, but yet, he diagnosed you with it???
He found fibers on some of his patients. One of them, he gave doxy for another reason, and the fibers went away.
I did say that I do not know if Morgellons is a disease, not it is or is not, just that I do not know. My doctor does not know if it is a either. He disgnosed me with the condition referred to as Morgellons, insofar as I exhibit the classic symptoms - blue, red, black, and colorless fibers coming out of my skin. Also, I have black dots.
What are you talking about? What people thought my symptoms were acne?
Greta, I was just going by your comments on Lymebusters, where you said your mother reminded you that your father and his mother had bad acne, and your grandmother had scarring just like you. I thought that meant she was saying that she though you had inherited acne.
You also mentioned a dermatologist diagnosing you with acne, I believe.
Didn’t you ever have sebum filled pustules on your face? i.e. acne?
Greta, in another comment you made a reference to having “pimples,” perhaps that’s what Michael is talking about.
I suspect you may only used that phrase as a discription, not to imply that you had or were diagnosed with acne.
Greta, on May 24th, 2006, in the “has anyone with severe infection recovered?” thread:
Sounds like the derm though you had acne with ingrown hairs. Pretty common, and also a common cause of dermatillomania.
TNFa levels can be elevated for a ton of reasons aside from psoriosis, including, but not limited to: Malaria, cancer, diabeties, hypoglycemia, anemia, hepatic and kidney disfunction, African trypanosomiasis, Adrenal insufficiency or Addison’s disease, sleep apnea, HIV, diastolic heart failure, dengue hemorrhagic fever/dengue shock syndrome, rheumatoid arthritis, multiple sclerosis, endotoxin shock, osteoporosis, Alzheimer’s disease, septic shock, cardiopulmonary dysfunction, acute respiratory distress syndrome (ARDS), asthma, myelodysplastic syndrome, brain trauma, ischemia, acute inflammatory demyelinating polyneuropathy, Non-thyroidal Illness Syndrome, Acute Meningococcaemia and multiple organ failure.
Elevated TNFa alone is no a reason to believe I have psoriosis. I have no psoriosis symptoms.
No dermatologist is going to preform a biopsy to test for psoriosis based on elevated TNFa levels.
Oh yes, the the derm did say, “looks like acne” and prescribed me acne cream. It did nothing. He did not say I had ingrown hairs, that is what my doctor originally thought about the fibers. Also, I went to another derm shortly after the first one who said I did not have acne, just that it looked like I had scratched my skin.
I do not believe I said my, “mother reminded you that your father and his mother had bad acne, and your grandmother had scarring just like you” Maybe you are confusing me with someone else.
The “pimples” I was talking about are the bumps that, if scratched, emit fibers.
http://www.google.com/search?q=+site%3Alymebusters.proboards39.com+greta+acne
TNFa elevations are a sign of inflammation somewhere, but it may not be a big deal. Does your psychiatrist think that he has “morgellons disease” Greta?
That was a different Greta! Not me. She has spent thousands on this. I have not spent much money on this. Her grandma was a historian who wrote 3 books. My grandma was not a historian and never wrote any books. That Greta says she can not bear to go back to doctors. I go to see my doctor every week. She has tried “all sorts of treatments.” I only try what my doctor prescribes. Her mom lives out of the country, mine lives in Vermont. She thought she had parasites, I never thought I had parasites. She says “bless you all.” I am not religious.
No, my psychiatrist does not think he has Morgellons disease.
Okay Greta, now that’s all ironed out, I guess we’ll just have to wait for the results of your tests.
Michael,
How did you get interested in this subject? Do you have a medical background (Mary Leito in an interview thinks you are a dr.). I would be more than willing to help you out with this blog and/or a proboards message board. I am in favor of the board.
I think it is great to have a website that crictically analysis this situation. I myself am skeptic but I am waiting to see what the CDC finds.
I have no medical background. I’m retired, so have a lot of spare time. I’m just interested in scientific skepticism in general, and there seemed a need for some rebuttal of the MRF. It just grew from there.
I’m looking into a proboards message board. It’s just a rather jarring transition.
I had the symptoms of Morgellons with extreme pain and the parasites seen with a 100X microscope.My doctor prescribed Hydroxyzine HCL 10 MG. tablets and Clobetasol Propionate ointment 0.05% The symptoms disappeared in 10 days on May 25,2006.It has not returned but I keep the meds handy anyway.
M
The one thing i have found that most of these sufferers have in common they all use meth.
According to Primetime last night, the fibers were examined by a police crime lab and it was determined that nothing like that has ever been seen. Read that again until you “get it.” We’re talking UNKNOWN SUBSTANCE.
All of life, whether it be microbes, fungi or human beings is constantly changing, mutating. Why does mainstream medicine keep ignoring that fact? They tend believe that if they didn’t learn it in med school, it doesn’t exist.
No, not “like nothing that has ever been seen“, he said “This isn’t lint. This is not a commercial fiber. It’s not.”
All that was shown was that they were unable to identify the fiber as a commercial fiber. So either it’s not in their database (new commercial fibers are created al the time), or it’s not a commercial fiber (something like a paper fiber), or it’s an naturally occuring fiber (of which there are millions). Or maybe it’s something new to science.
But like the doctor says, one fiber does not make a disease.
Wymore had a red unidentified fiber as well, that had a totally different FTIR spectrum. Two different fibers makes even less of a disease.
read this:
http://morgellonswatch.wordpress.com/2006/08/08/abc-morgellons-medical-mystery/
No, one fiber does not make a disease. However, the number of credible people inflicted combined with the fact that these fibers aren’t identifiable says to me that this deserves open-minded investigation rather than automatic dismissal.
“Credible people”???????
How long have you been following this Judy?
I’m saying that I found the people interviewed on Primetime credible.
I’m also saying that after having had a health scare in the family which prompted a year of research, I’m left with mistrust, disgust and disdain for the AMA and pharmactical companies. A man could literally arise from the dead in the middle of an NIH meeting and it would not be recognized without a study.
Let’s talk about studies. They’re expensive and drug companies won’t embark on one unless they can not only recoup the expense, but also get a patent and make a killing. That’s why we’re about one antibiotic away from disaster in this country, yet have a dozen different pills to get an erection, a good night’s sleep and take the ‘edge off’ tension.
I used to think that people who thought like me were conspiracy nuts, but the fact is, there have been (and are still) many inexpensive cures for cancer, and if I ever get it, the very LAST place I’d go would be to a mainstream doctor.
Having had my rant, I’ll say this…isn’t it very unscientific to judge a protocol without first checking it out? And what kind of scientific research/study has been done on this Morgellans condition? Like I said, it’s going to take a lot more than someone in a white lab jacket saying, “There’s no such thing,” to change my mind.
Judy, do you know how the study of AIDS got started? Five guys had the same unusual symptoms, so the CDC started investigating.
That’s all it takes. The problem is the Morgellons community can’t find five people who have the same symptoms.
Judy says:
“Having had my rant, I’ll say this…isn’t it very unscientific to judge a protocol without first checking it out? And what kind of scientific research/study has been done on this Morgellans condition? Like I said, it’s going to take a lot more than someone in a white lab jacket saying, “There’s no such thing,” to change my mind.”
And it’s going to take a lot more than just a few people on an ABC Primetime show saying they have fibers coming out of their bodies and photos of microscopic fibers to change *my* mind.
Frankly, I’ll take what “mainstream medicine” has to say before I’d take what consists primarily of anecdotal evidence from individuals who have diagnosed themselves. But that’s just me. Doctors and scientists might not have all the answers but they’re still a hell of a lot more credible than the individuals profiled on Primetime.
People are suffering, sure. No argument there. The question is what are they suffering from. I have not seen any credible evidence whatsoever that there is such a thing as Morgellons, though I do have some respect for Dr. Wymore & his team for at least looking into it. I do think they’ll be able to reach some conclusions about it. However, I’m a bit concerned that if they find that there is no credible evidence to support the existence of “Morgellons” that those who suffer from “it” won’t believe it and continue to distrust “mainstream medicine” and label Dr. Wymore as part of the “conspiracy.” That all has yet to be seen, so I’ll try not to assume anything.
On the other hand, if they *do* find credible evidence, some people may be helped. That would be a good thing, of course.
Thanks for answering Judy. I can’t imagine letting bitterness taint judgement. How strange a concept.
Uh, nevermind. I’m all confused now.
These people are suffering because they had a severe problem in accepting their diagnoses, and they refused to. That is why they spiral downward.
Quite actually, they didn’t follow through, honestly, to see that diagnosis all the way through, with a referral to rule it out, is what I believe happened to all too many of them, based on what I know.
Well, Smileykins, we’ll just have to agree to disagree.
And, MHK, you’re taking the position that there is no such thing as Morgellons until an investigation proves that there is. I am saying that there very well could be until an investigation proves that there is not. At the end of the show, they mentioned that the CDC is finally going to investigate, so we may have our answer someday. (I hope I get to say, “I told you so, I told you so!”) :>
No, Judy. You think your way, if it works for ya, and I’ll stay focused on the truth of what I know from many of these people personally. That’s where i have a little more advantage over it,
Judy, the problem with your position is that proving a negative is a logical fallacy.
http://en.wikipedia.org/wiki/Negative_proof
” … This is fallacious for two reasons: first, it requires proof of a negative, and second, it places the burden of proof on the challenger, not the proposer of the idea. “
Judy, I respect your right to your opinions, but it sounds like you want us to have a pretty messed up situation on our hands, if you’re hoping there turns out to be a new disease. These poor people have a plethora of health problems among them, that are treatable (with exceptions, of course), to account for their symptoms. They skipped square one and the rest is history. I know how I’m coming across, but. yes, we all have the right to believe in anything we choose to believe in, regardless of how we arrived at our conclusions, or how much, or how little we know, or think we know. It’s impossible for me to see the science, when I have walked among the victims so intimately.
It all started with a fluke named George!!! (Sorry, just kiddin’) My thoughts are getting to me so I needed to laugh. Bummer.
I had never heard of Morgellan’s before about a week ago, but I thought it fascinating and wanted to find out more. This site was included in my search. I just wanted to say, that as someone who was pretty much told her Lupus was all in her head for the first number of years she had it, I can strongly identify with anyone who seems to “want” a disease to be real, not to feed some obsession or delusion, but to begin to accept what is happening and try to find solutions. However,I understand any reluctance to encourage people who believe they have this illness to try some of the drastic “cures” mentioned. They are pretty extreme and need to be second guessed and probably discouraged all around. But, though you all think you are “helping” people by “forcing” them to confront their “delusions” you are in fact making things worse and you do sound snide, condescending, and closed minded. You may be the ones living in denial, just becasue it is easier to believe what you want than to admit a terrible disease might exist. I’m not saying I believe it does, but it does deserve serious, real consideration and investigation rather than summary dismissal and disdain. If enough people are coming forward to try to present their own evidence of it, why not investigate in a serious manner? It may seem that it is only after media exposure that all these people suddenly think they have the “disease” and to some small extent that may be true, but have you ever considered that the people who claim to have it may have felt it was so bizarre they questioned their own sanity and were afraid to come forward until someone at least marginally “validated” them and what they were experiencing? They are more likely to report the problem if they feel it is “real.” Do you see the difference? The same is true with all diseases, believe me. When you have one of these bizarre, hard-to-diagnose diseases, believe me you vascilate between wanting to believe there is nothing wrong because it’s so bizarre, and needing to have a firm diagnosis so you know you’re not just crazy. People with weird diseases want a diagnosis if it is real, so they DON’T feel crazy and telling them to accept it’s all in their heads makes them feel even more crazy and desperate. Then when they’re proved to have a disease, they’re already phsycologically scarred by the whole process of being misdiagnosed. Plus, as Robert correctly pointed out, there has been no clear DIS-proving of the disease and until someone ACTUALLY studies it in a controlled, scientific way, it is a possibilty. Maybe some of the “nuttier” REASONS or maifestations could be seriously questioned, such as aliens or moving fibers, but, just because we don’t automatically identify with something as it is presented by each and every person describing it, doesn’t mean it’s automatically to be discredited. Also, as a person with two graduate dregrees in health sciences I was taught that studies are to be ripped apart, and many are flawed, biased (funded by Pharmaceutical companies) and may not be well controlled or of good methodology. I’ve also learned that doctors ARE often dead wrong. My “proving” biopsy was done by a clinic primary doctor who’d had my same problem (vasculitis) while my lesions were ignored by a prominent Rheumatologist who then grudingly had to see my slide for herself. She grudgingly agreed it had been vasculitis, which
she’d ignored as hives or something benign. Remember, someone once said: “oh, yeah, right, the world is round. You NUT JOB. Everyone can see that you can sail right up and fall off the edge. What a quack theory.”
Don’t make judgements on what you only think you understand.
Only 50 years ago my grandmother followed the popular medical advice that taking calcium was bad for you, and all her teeth fell out while pregnant with my aunt. What we think we “know” is only true until disproven by further science. Doctors and scientists are not Gods. So don’t act like you know it all, too. Perhaps there are some mixtures of problems and this is not one thing or the other. For example, I find it curious that though I’ve been tested for Lyme, I was negative, but feel I now have reason to be retested, as I saw on Discovery Health a case of a teen who had crippling arthritis and other symptoms but was told she was negative until going to a certain doctor who used more conclusive tests, and she was then CLEARLY positive and was helped by treatment. It’s my recent development of eye problems that has prompted me to begin to reevaluate my diagnosis again. Oddly enough, I also have chronic skin lesions over my chest that have tested positive for staph, look like acne, darken skin like candida and result in pustules. But, some of them don’t actually have anything but folliculitis and a hair that seems to oddly come out when squezed and looks kind of fiber-like. But I’ve always been convinced it was a hair covered by skin. A “thick” white, hair, covered with something. When they come out, they almost seem to move in a way that looks like “snaking” or like a stream of puss, but they are hair. I don’t get any of the other symptoms, and I’ve never had anything like the “fibers” I heard described, and they certainly don’t really move, only come out of the hair follicule with pressure, but it does look weird when it happens. I think it may be my body protecting itself with a “callus” to prevent infection from spreading in the bloodstream. Maybe. Perhaps there is some variation on this that some people are experiencing all over their bodies. But again, I’ve always known it was a form of folliculitis that cases this in me and that it is hair covered with skin or something. I’ve never thought it moved, saw specks or bugs or anything like that. But, I, with my own bizarre symptoms don’t automatically discredit what anyone else experiences, and you shouldn’t either. There probably is quite possibly a reason for it. Keep an open mind. And stop judging people who are quite possilby really ill. Even if as some of you say:
“He may really be ill, just not with Morgellans.” This is damaging. First of all, how do you know if you’ve never researched Morgellans or met or examined the patients, and secondly, so what if a NAME doesn’t exist for what is happening to them or if it is a mixture of illnesses? SO WHAT?
It sill needs understanding, reasearch, evaluation and some type of treatment, and calling these people “delusional” without knowing for sure is irresponsible and judgmental.
I think that as someone who just heard of this about a week ago, Anonymous, for some odd reason, you went on with a very long comment. I don’t know what all it said, but much of the beginning sounds like you’re a rather odd one, to have so much authority after an entire week, give or take a few days. Hope that’s workin’ real well for you.
Anonymous said…
“I had never heard of Morgellan’s before about a week ago…”
You said it all in the first sentence.
Tall Cotton
Anonymous, the owner of this blog is all for scientific study. That’s the point.
That’s what’s known as having a lot to say before knowing what you’re talking about, I believe.
No body had heard of Chronic Fatigue Syndrome before it happened, either, Tall Cotton. Those people were also called ‘delusional.’ Do you think that diseases don’t evolve and change? Do you think that we’ve already seen every pathogen that ever will exist? Did evolution just stop somewhere along the line? Now, that’s scientific.
The fact is, we’re all just blowing bubbles in our milk until the investigation(s) is over. The difference is, I’m for giving people the benefit of the doubt until we know for sure rather than saying that ‘there’s no such thing’ before we know that.
Judy, nobody is denying that people are sick. The debate (which should not be a debate, but rather a scientific study) is over whether there is evidence that there is a new disease. The Morgellons Research Foundation and Prof. Wymore seem to have skipped over that step and moved on to blindly examining random fibers.
Chronic Fatigue Syndrome is STILL in debate. Again, people are sick, but CFS symptoms are caused by a lot of diseases. CFS is simply a way of saying “you have this particular set of symptoms, but we have NO IDEA why, so we’ll treat the symptoms, not the cause”. Many doctors feel that CFS is at best overdiagnosed, with a lot of patients given a stamp of CFS just to keep them happy. Some doctors feel that CFS is also sometimes the result of incompetence on the part of the doctor, where diseases such as cancer as initially misdiagnosed as CFS.
Of course there are thousands of pathogens yet to be discovered. There are new pathogens emerging all the time, and part of the CDC’s mission is to look for evidence of emerging pathogens. That’s how AIDS was discovered. The problem with Morgellons is not that we are closed-minded, it’s that there is