Morgellons Mystery

[Cedars]

WARNING!!

If your the type who hears about a new condition and then thinks OMG! Thats Me! Do not read this thread

My ex used to complain of this. He picked at his skin all the time, went to doctors, kept making me look at his 'spots' and I could never see anything. He couldnt believe I couldnt see the 'tiny hairs'. I thought he was nuts (so did the doctors). Maybe it was real.

I'm still undecided whether I should tell him there might be something to it (its cleared up now). Hes been being pretty nice the last few months. Something I will tuck away and torment him with if he misbehaves again.

The Centers for Disease Control and Prevention announced today that it is launching a study to learn about an unexplained condition that causes people to feel as if they have foreign substances growing from their bodies.

ABC News: Bugs in Your Skin? Medical Mystery Probed

And from a different site:
In summary:

There were many similarities in fibers from all four individuals, both in size and color. All samples showed bright aqua autofluorescence using the fluorescent microscope, with red and black non fluorescent fibers. The fibers collected from these four individuals from different counties of the San Francisco Bay Area are so similar to each other that the causative agent may be epidemiologically the same.

Respectively submitted,

Jenny Haverty
Clinical Microbiologist Scientist
Marin General Hospital
Greenbrae, California

Morgellons Fiber Study Summary

General Information | Unexplained Dermopathy

[CraigD]

Originally Posted by Cedars

My ex used to complain of this. He picked at his skin all the time, went to doctors, kept making me look at his 'spots' and I could never see anything. He couldnt believe I couldnt see the 'tiny hairs'. I thought he was nuts (so did the doctors). Maybe it was real.

I'm still undecided whether I should tell him there might be something to it (its cleared up now). Hes been being pretty nice the last few months. Something I will tuck away and torment him with if he misbehaves again.

The Centers for Disease Control and Prevention announced today that it is launching a study to learn about an unexplained condition that causes people to feel as if they have foreign substances growing from their bodies.

The new CDC/Kaiser study is not, I think, an indication that Morgellons as a non-psychiatric condition is being taken any more seriously. I suspect the study’s result will be increased evidence that it’s entirely psychiatric.

In short, you and your ex’s MDs were most likely right about him being nuts. If I were you, I’d not bring up the subject with him, if you can avoid it.

Your post was my introduction to this bizarre condition – I’d never heard of it before. Interestingly, on the CDC’s FAQ page about the new study, they mention contracting with Kaiser in part because

… Kaiser Permanente has electronic health records that will allow a systematic method of identifying persons who may have this condition.

The computer systems they’re talking about (or at least a good bit of its regionalized infrastructure) are my babies!

Originally Posted by Cedars

There were many similarities in fibers from all four individuals, both in size and color. … The fibers collected from these four individuals from different counties of the San Francisco Bay Area are so similar to each other that the causative agent may be epidemiologically the same.

According to several of the sites I browsed, another explanation is that they are similar because the causative agents are similar clothing or furniture – that is, that these fibers are not produced by the patients’ bodies, but imbedded in them. Many of the fringier Morgellons study and support groups appear reluctant to compare their fibers to samples from the patient’s environments – one of the reasons mainstream medical researchers consider them fringy.

[Pyrotex]

Listen up, Earthlings!

For decades, you complained and whined about anal probes, even after we miniaturized them.

So, now we plant nearly invisible electronic networks with "fiber sensors" under your skin, and STILL you bellyache!

Make up your minds! The only alternative at this point is "dog collars" with built-in tasers, or go back to the anal probes. It makes no difference to us.

Pyro of Prallnothgrizore Minor

[Cedars]

Originally Posted by CraigD

The new CDC/Kaiser study is not, I think, an indication that Morgellons as a non-psychiatric condition is being taken any more seriously. I suspect the study’s result will be increased evidence that it’s entirely psychiatric.

In short, you and your ex’s MDs were most likely right about him being nuts. If I were you, I’d not bring up the subject with him, if you can avoid it.

well... it could be a home test on whether his condition is psychatric. Maybe a dual test on my own psychology even. Will I torment or will I will I let him be?

Originally Posted by CraigD

Your post was my introduction to this bizarre condition – I’d never heard of it before. Interestingly, on the CDC’s FAQ page about the new study, they mention contracting with Kaiser in part becauseThe computer systems they’re talking about (or at least a good bit of its regionalized infrastructure) are my babies! According to several of the sites I browsed, another explanation is that they are similar because the causative agents are similar clothing or furniture – that is, that these fibers are not produced by the patients’ bodies, but imbedded in them. Many of the fringier Morgellons study and support groups appear reluctant to compare their fibers to samples from the patient’s environments – one of the reasons mainstream medical researchers consider them fringy.

Yes but from the abc link I posted and referenced in the wiki link:

Forensic scientist Ron Pogue at the Tulsa Police Crime Lab in Oklahoma checked a Morgellons sample against known fibers in the FBI's national database. "No, no match at all. So this is some strange stuff," Pogue said in 2006. He thought the skeptics were wrong. "This isn't lint. This is not a commercial fiber. It's not."

I assume when he uses the term skeptic, he is referring to the people who are from the Morgellons camp, rather than the medical community who are putting this into the lint category.

Its good thats its being investigated further no doubt. Its bad enough when a person has mental issues and trying to get them to deal with that. But its way worse when someone who is reporting a real condition is labeled as mentally unsound and advised to take anti-psychotics, anti-depression, etc.

[Cedars]

Originally Posted by Pyrotex

Listen up, Earthlings!

For decades, you complained and whined about anal probes, even after we miniaturized them.

So, now we plant nearly invisible electronic networks with "fiber sensors" under your skin, and STILL you bellyache!

Make up your minds! The only alternative at this point is "dog collars" with built-in tasers, or go back to the anal probes. It makes no difference to us.

Pyro of Prallnothgrizore Minor

I dont think its the aliens one should worry about:

Man sues after unwanted rectal exam - Crime & courts - MSNBC.com

I dont mind a bit of hazing. As I posted, I thought he (the ex) was nuts. Maybe if I had described the sores he picked into his arms and chest as he tried to dig out the offending 'hairs', and described how it felt to watch someone I cared about scarring himself you wouldnt have been so quick to associate it with aliens and rectal exams. Just an FYI, he never associated it with aliens.

It sure would have been nice if you had offered something of substance along with your attempt at humor.

It may turn out that I am going to have to apologize to him (and face his anger as he relives that anguish and despair he felt as I sided with the doctors because no one believed him). I think I would prefer that, rather than keep the memory as is, he scarred himself over nothing.

[Pyrotex]

Sorry. The humor was a bit empty of content, and abrasive. My alien keepers have advised me to be more cautious in mocking the problems of others.

[CraigD]

Originally Posted by Cedars

Yes but from the abc link [ABC News: Bugs in Your Skin? Medical Mystery Probed] I posted and referenced in the wiki link [Morgellons - Wikipedia, the free encyclopedia]:

Forensic scientist Ron Pogue at the Tulsa Police Crime Lab in Oklahoma checked a Morgellons sample against known fibers in the FBI's national database. "No, no match at all. So this is some strange stuff," Pogue said in 2006. He thought the skeptics were wrong. "This isn't lint. This is not a commercial fiber. It's not."

I assume when he uses the term skeptic, he is referring to the people who are from the Morgellons camp, rather than the medical community who are putting this into the lint category.

I think Pogue is referring to “skeptics” as the MDs and others who assert that “morgs” (as interested people appear to abbreviate them) are ordinary fibers from the patients’ surroundings. It wouldn’t make sense for him to be referring to people who claim morgs are not ordinary fibres, since he’s agreeing with them that they are not.

In any case, I think the CDC/Kaiser study is the right way to address the question. Practicing clinicians are not research scientists, and lack the tools and training to address questions like the preceding “source of the fibers”. Law enforcement forensic experts like Pogue are not necessarily better equipped, following procedures that are in many ways as narrow-purpose/goal-oriented as those available to clinicians (as well as being terribly poorly peer supervised and reviewed). Journalists such as the abcnews articles anonymous author are certainly poorly trained and equipped. Clinicians’goals are to make the patient better. Forensic experts’ goals are to assist police and court officers with prosecuting and convicting the correct people (and, regrettably it seems with a somewhat lower priority, not prosecuting and convicting the incorrect people). Journalists goals are … not innately conducive to good health. None of these professions are, by training or methods, well suited to basic questions such as identifying the source of a heavily contaminated fiber.

At a first glance, I’m disposed toward the “from the environment” explanation of morgs. I’ve personal experience with finding large, disturbing amounts of fibers in large scrapes on my own body, often under the granulated and even smooth scar tissue that forms as they heal. The histine-rich fluid in a healing abrasion is very tacky, and attracts fibers and other environmental debris. While I’ve also had a few ingrown hair that became infected, suppurated, and appeared as a curly mass in an open sore, the samples I’ve seen identified as morgs look to me more like the former than the latter.

Originally Posted by Cedars

It may turn out that I am going to have to apologize to him (and face his anger as he relives that anguish and despair he felt as I sided with the doctors because no one believed him). I think I would prefer that, rather than keep the memory as is, he scarred himself over nothing.

I’ll stick with my original “keep quiet, wait and see” advice. If Morgellons is a primarily psychiatric condition, acquainting someone who is or has suffered from it to a large body of poorly scientifically substantiated claims that it is not could be very unhelpful. If, as appears unlikely, scientific studies show otherwise, effective therapies are likely to result, should your ex have a recurrence.

I get the impression that, like many medical professionals, you tend to consider psychiatric illness to be somehow less “legitimate” than purely physical illness. I don’t think this is the true – good caregivers understand, I think, that mental illness is as real and important as illness in people of impeccable sanity. Scientifically understanding the real cause of a condition such as Morgellons, and being able support the explanation with well-controlled scientific data, is an essential first step in its effective treatment, whether that treatment is psychiatric or otherwise.

Personally, I believe the old aphorism that “the truth (as best we can know it) will set you free.” Sometimes, the truth is that a disorder widely considered psychiatric actual is. In such a situation, no matter how strong ones wishes and motivations, attempting to prove otherwise doesn’t server truth, further freedom, or promote health. Science, such as will be done in the coming months and years by the CDC and Kaiser, is, I’m strongly convinced, the most effective tool we have in finding the truth, and best helping the ill of all kinds.

Best wish to you and your ex – be well and thrive.

[Cedars]

Originally Posted by CraigD

I think Pogue is referring to “skeptics” as the MDs and others who assert that “morgs” (as interested people appear to abbreviate them) are ordinary fibers from the patients’ surroundings. It wouldn’t make sense for him to be referring to people who claim morgs are not ordinary fibres, since he’s agreeing with them that they are not.

Right. I reversed it in my post.

Originally Posted by CraigD

In any case, I think the CDC/Kaiser study is the right way to address the question. Law enforcement forensic experts like Pogue are not necessarily better equipped, following procedures that are in many ways as narrow-purpose/goal-oriented as those available to clinicians (as well as being terribly poorly peer supervised and reviewed). Forensic experts’ goals are to assist police and court officers with prosecuting and convicting the correct people.

That is a good point. But of the people in the position to determine fiber origin, I dont think you can argue that the fbi national database is ill-equipt, and probably has more data than any other source. I really cant blame people for looking outside of the medical community for answers to the question, what are these fibers?

Originally Posted by CraigD

I get the impression that, like many medical professionals, you tend to consider psychiatric illness to be somehow less “legitimate” than purely physical illness. I don’t think this is the true – good caregivers understand, I think, that mental illness is as real and important as illness in people of impeccable sanity. Scientifically understanding the real cause of a condition such as Morgellons, and being able support the explanation with well-controlled scientific data, is an essential first step in its effective treatment, whether that treatment is psychiatric or otherwise.

I dont consider mental health issues less legitimate. What bothers me is the seeming tendency to label everything out of a certain circle of 'typical' as a mental health issue. For example, before lymes disease was in the news a person who lived locally where I grew up was labeled with having 'mental health issues' because doctors could not determine the cause of his pain. He went through alot of hell before someone else, miles away and years later figured out the answer.

What good does that do for those who legitimally suffer from mental health issues?

And what happens to the spouse/parent/friend who sides with the patient who resists the label assigned when medicine cannot answer the question? I can answer that. Co-dependent. Enabler. blah blah blah.

Originally Posted by CraigD

Science, such as will be done in the coming months and years by the CDC and Kaiser, is, I’m strongly convinced, the most effective tool we have in finding the truth, and best helping the ill of all kinds.

I agree with this. But science has resisted helping, exploring, discovering because the fibers dont grow in a petri dish.

I had never heard of Morgellons until the day I posted this in hypo. But I wasnt even thru the first page of the abc news article before the memory of what my ex experienced flooded back into mind. It may be that what he suffered with was in his head. Thats what I used to think. But now I have reason to be skeptical of that diagnosis. Skeptical, not convinced. Now I am back to the 'geez, i dunno' when I prefer to have the answer.

[Pyrotex]

We also make a mistake when we point to Lymes disease and say, "See, if a new disease comes around, doctors always accuse people of having mental problems."

It doesn't work that way. A really new disease may fool many doctors for a few years, but as soon as a few articles show up in medical journals, boom!, they all tip over in the opposite direction and get busy dealing with the new disease.

The problem is, medical doctors at the street level (your family doctor) is NOT trained to recognize new, undefined, unseen, never-before-described diseases! They ARE trained to recognize established, understood, seen-before, categorized diseases.

When a new disease crops up, the family doctors are stymied, as well may be the specialists in the big city medical centers. They report their mystery cases to something like the National Disease and Contagion Center (I made that up) who collect statistics. As soon as a pattern appears--dozens of people with a new set of unexplained symptoms (like morgellons), then eventually a research team looks into it. And voila! Lymes Disease gets its due recognition and treatments begin to appear.

[Cedars]

Originally Posted by Pyrotex

When a new disease crops up, the family doctors are stymied, as well may be the specialists in the big city medical centers. They report their mystery cases to something like the National Disease and Contagion Center (I made that up) who collect statistics. As soon as a pattern appears--dozens of people with a new set of unexplained symptoms (like morgellons), then eventually a research team looks into it. And voila! Lymes Disease gets its due recognition and treatments begin to appear.

Lymes is a good example.

"Because the legal standard of care is defined by the consensus of treating physicians (rather than published guidelines), two standards of care for Lyme disease are now recognized in the U.S., a situation with significant legal implications for both patients and clinicians."

"The 2006 IDSA guidelines have come under fire from a variety of corners. The International Lyme and Associated Diseases Society (ILADS), a professional medical society, formally requested retraction of the IDSA guidelines, arguing that the authors ignored all published data that conflicted with their opinions, and refused input from physicians and patients with differing views."

Lyme disease controversy - Wikipedia, the free encyclopedia

More on Lymes:
Lyme disease - Wikipedia, the free encyclopedia

One thing for sure. You dont want to be the first one at your doctors office with something new or rare or controversial.