White Coat Underground

I really didn’t mean to get dragged back in to the Morgellons controversy. Really. But I made a flippant comment on a recent post, and here I am. Let me put down some brief thoughts here:

1) There exists a loosely affiliated group of people who are suffering from diverse and (to them) unexplained symptoms, and they have named these “Morgellons”.

2) The public voices of these people are dominated by people who come off as being nuts. This is not the fault of the sufferers.

3) The suffering is real—the is the clearest truth.

4) The science to date does not support any new and unusual illness. All of the findings are easily understood by conventional explanations.

5) Despite the fact that no good science has yet supported the claims of a new, emerging disease—or perhaps because of it—the public voices of this group latch on to bad science that validates their beliefs—regardless of the truth.

6) Conspiracy theories permeate this community, and like many altmed communities, they appear to be unwilling to accept conventional explanations for their suffering.

7) It is very easy to over-generalize about these people.

The only way to find an answer here is go where the science leads. I have a feeling, though, that if the science doesn’t give the Morgellons crowd the answer they want, their not-so-better angels will dominate the discourse.

Comments

#1 bengt
May 14, 2009

The unusual not-science and medicine-as usual data is the fibers data: Not human nor human-made; Not animal, plant, fungal, bacterial; not susceptable to pyrolysis or burning (see Dr. Wymore’s work) etc.

I have seen these fibers under a microscope in a live blood sample (darkfield microscopy)from a Morg patient. They have about a 35 micron diameter, length of that particular fiber was probably 700 microns. It appeared very spectral.

I have also seen flatworms (dead) in the same patient’s sample. The morbidity was from a non-drug non-herbal non-homeopathic non-allopathic dietary supplement the patient was ingesting.

Though the conventional allopathic medical community has had zero success with Morgellon’s sufferers, it is interesting that certain essential oils, aromatic compounds, non-petrochemical derived skin care products have had some success in alleviating symptoms.

There is a huge schism with mutual distrust for the most part between the conventional medical community and the so-called alternative health and healing community. Quackery abounds, non-ethical behavior abounds, etc. on both sides of the fence. It is a human condition not a professional affliction based on mode of practice! The forest is lost for the trees when we cease to focus on the rights and needs of the patient. To actually move forward out of this morass will require the type of dialogue that PalMD has begun here on this forum. Thanks!
#2 bengt
May 14, 2009

The unusual not-science and medicine-as usual data is the fibers data: Not human nor human-made; Not animal, plant, fungal, bacterial; not susceptable to pyrolysis or burning (see Dr. Wymore’s work) etc.

I have seen these fibers under a microscope in a live blood sample (darkfield microscopy)from a Morg patient. They have about a 35 micron diameter, length of that particular fiber was probably 700 microns. It appeared very spectral.

I have also seen flatworms (dead) in the same patient’s sample. The morbidity was from a non-drug non-herbal non-homeopathic non-allopathic dietary supplement the patient was ingesting.

Though the conventional allopathic medical community has had zero success with Morgellon’s sufferers, it is interesting that certain essential oils, aromatic compounds, non-petrochemical derived skin care products have had some success in alleviating symptoms.

There is a huge schism with mutual distrust for the most part between the conventional medical community and the so-called alternative health and healing community. Quackery abounds, non-ethical behavior abounds, etc. on both sides of the fence. It is a human condition not a professional affliction based on mode of practice! The forest is lost for the trees when we cease to focus on the rights and needs of the patient. To actually move forward out of this morass will require the type of dialogue that PalMD has begun here on this forum. Thanks!
#3 NJ
May 14, 2009

…and demonstrating point #2 right off the bat.
#4 JohnV
May 14, 2009

“non-drug non-herbal non-homeopathic non-allopathic dietary supplement the patient was ingesting.”

What the hell is the person ingesting?
#5 JustaTech
May 14, 2009

JohnV: At a guess, food. Or tin cans. But the only “non-drug non-herbal non=homeopathic non-allopathic dietary supplement” I take is food. But tin cans would also meet those criteria.
#6 PalMD
May 14, 2009

I have seen these fibers under a microscope in a live blood sample

If this condition is afflicting so many people, where are all these observations and samples? All i ever see is comments on forums, and various unpublished stuff. I’ve seen path reports, none of which support the unusual hypotheses.

Quackery abounds, non-ethical behavior abounds, etc. on both sides of the fence.

I think this is half right.
#7 LanceR, JSG
May 14, 2009

“non-drug non-herbal non-homeopathic non-allopathic dietary supplement the patient was ingesting.”

Water?
#8 daedalus2u
May 14, 2009

It is simply not possible for a competent analysis of an unknown fiber sample to not identify it as a parasite if it is one.

If the sample was potted, sectioned and then examined under a microscope, every parasite would show internal structures that would unambiguously identify it as something that was once alive.

So far there has been no such analysis. Either every individual who has examined every sample has been grossly incompetent (including the current researchers), or the fiber samples are not parasites. Or both.

This is not a close call.
#9 Dianne
May 14, 2009

non-drug non-herbal non-homeopathic non-allopathic dietary supplement the patient was ingesting

Tapeworm egg(s) sold to him/her as a “weight loss aid”?
#10 Jon H
May 14, 2009

“”non-drug non-herbal non-homeopathic non-allopathic dietary supplement the patient was ingesting.”"

There was an old woman who swallowed a cat to catch the worms…
#11 Jon H
May 14, 2009

If all these thousands of peoples’ had skin shedding parasites and goo and fibers all the time, I’d think there’d be more than enough specimens to go around for anyone interested to have a look.
#12 Shiritai
May 14, 2009

“Water?”

But wouldn’t that be homeopathic?
#13 Pareidolius
May 15, 2009

Xenu defeated the Morgellons in the battle of Marcab about 16 trillion years ago, everyone knows that. That’s why they’re reappearing as skin-thetans. Only $cientology auditing will remove them. That will be $12,000 please.
#14 dc10801
May 15, 2009

“If all these thousands of peoples’ had skin shedding parasites and goo and fibers all the time, I’d think there’d be more than enough specimens to go around for anyone interested to have a look.”

uhhh thats the problem…yes, there are and no, they won’t! lol
#15 Critic
May 15, 2009

Please bear in mind, with regards to your last paragraph, that “the only answer [Morgellons-sufferers] want” is a cure. I trust this is not such a despicable wish as you seem to imply.

There are irresponsible and unscientific people currently in both camps: The deniers of empirical evidence should be all classified as such but also those who recognise Morgellons as a potential new disease but only abuse this to further some political or conspirational agenda, instead of a cure.
#16 Cliff Mickelson
May 15, 2009

Dear sir:

Please stop embarrassing yourself. You don’t know what you are talking about and doing so in print can have a nasty tendency to come back to haunt you. I suggest you stick to subjects with which you are familiar or, better yet, put your money where your mouth is and make a sincere commitment to involve yourself honestly in the field of Morgellons research.

There are plenty of highly qualified medical researchers and physicians out there who would be very happy to bring you up to speed. All you need to do is ask. Until that time, spare us the warm and fuzzy pontifications and the erroneous second hand observations.

So… What do you say? Are you willing to get on board? Who knows…There might even be a prize in Medicine for the first one to put a handle on this extremely unusual affliction. Let me know and I’ll gladly put you in touch with the top names in this emerging field.

-Cliff Mickelson
#17 Cliff Mickelson
May 15, 2009

Dear sir:

Please stop embarrassing yourself. You don’t know what you are talking about and doing so in print can have a nasty tendency to come back to haunt you. I suggest you stick to subjects with which you are familiar or, better yet, put your money where your mouth is and make a sincere commitment to involve yourself honestly in the field of Morgellons research.

There are plenty of highly qualified medical researchers and physicians out there who would be very happy to bring you up to speed. All you need to do is ask. Until that time, spare us the warm and fuzzy pontifications and the erroneous second hand observations. We all know the “suffering” is real.

So… What do you say? Are you willing to get on board? Who knows…There might even be a prize in Medicine for the first one to put a handle on this extremely unusual affliction. Let me know and I’ll gladly put you in touch with the top names in this emerging field.

-Cliff Mickelson
#18 Mu
May 15, 2009

Would that be the Cliff Mickelson of MORGELLONS AND THE MYSTERY OF MIND CONTROL! fame?
#19 Pete D
May 15, 2009

OMG! I’m a materials characterization scientist…it would be such an easy thing to characterize the material that makes up these fibers. How is it that nobody has published a single peer-reviewed study on these things? I’ve seen the web postings about SEM/EDS, FT-IR, etc. These techniques should give a pretty good description of the chemical and structural nature of these fibers. Unfortunately, it looks like whatever data was gathered has been interpreted by people who are relatively incompetent at doing so.
#20 MarkH
May 15, 2009

The reason is that people have looked at them and it’s usually just lint. If you check out morgellonswatch they provide examples of how just about everything at higher mag looks weird and many examples of things that look like these supposed fibers that are subjects of all these silly claims.

It’s pretty simple. Morgellons is largely delusional parasitosis, a very old diagnosis. In fact, just about everything about it, including the irrational behavior, fits with this diagnosis. The disease was named initially by a mother who admitted to repeatedly dipping her kid in lindane to get rid of the imaginary bugs only she could see.

There is no point arguing with delusional people pal, we can’t fix delusions over the internets sadly. The best we can do is provide some responsible information about how this is delusional parasitosis, reports on it just generate more complaints in susceptible people (see my folie a news post.
#21 noneya
May 15, 2009

I find it very disturbing that many of you are debating this topic. As if it is a topic of debate. I am a person who suffers from something “unknown” who coincidently presents all those of the Morgelons symptoms. Did I ask for these specimens to burrow out of my skin, NO. I am not a dillusional person nor do I suffer from depression/anxiety or any other mental acquisition you will derive in your brain. I am/was a normal person with a family and a career, that is until the symptoms plagued my life and took all that resembled as the American dream out of reach for me. I think that it is sad that on top of my debilitating symptoms I too (and many others) have to suffer these wild accusations that it does not exist, simply because the CDC has nor confirmed nor denied such disease or syndrome. Have a heart people try to be sympathetic, after all, nothing ensures you will not too suffer one day as we do.
#22 mu
May 15, 2009

Noneya, this has nothing to do with not being sympathetic, but with science. Like Pete, I’m a material scientist, and I work a lot with fibers, doing modifications to the surface chemistry. As such, I’ve done A LOT of fiber analysis. It’s simply not credible to state that there are isolatable specimens that somehow defy analysis via state-of-the-art methods (like they would be available at OSU). What only leaves the conclusion that they don’t publish the data because they don’t like the results, probably because they don’t confirm their cause.
#23 Shiritai
May 15, 2009

“Let me know and I’ll gladly put you in touch with the top names in this emerging field.

-Cliff Mickelson”

Top names like Randy Wymore? The guy’s had access to samples for years, and yet says “We do not know a) the cause of Morgellons, b) what the fibers, black specks, granules or other unusual “shed” material are made of…” Has he forgotten about the very existence of analytical chemistry? There’s no excuse for him to not know, at the very least, the composition of those materials. And talk about a persecution complex: http://www.healthsciences.okstate.edu/morgellons/docs/Wymore-position-statement-2-19-07.pdf
#24 Katalina
May 15, 2009

PETE SAID:

OMG! I’m a materials characterization scientist…it would be such an easy thing to characterize the material that makes up these fibers. How is it that nobody has published a single peer-reviewed study on these things? I’ve seen the web postings about SEM/EDS, FT-IR, etc. These techniques should give a pretty good description of the chemical and structural nature of these fibers. Unfortunately, it looks like whatever data was gathered has been interpreted by people who are relatively incompetent at doing so.

Posted by: Pete D | May 15, 2009 10:10 AM

Excellent question.

My question to you as a sceintist is: Could it be that these sceientist are deliberately keeping it known only to themselves?

Dr. Wymore recently stated FTIR was done at multiple locations. Do you think he is telling the truth when he says they are no known substance?
#25 Mu
May 15, 2009

Katalina, the FTIR spectrum identifies specif groups in a material. Even if he cannot pull up an exact comparison spectrum, he should be able to say, that’s an amide, some aromatic rings, and no alcohol bonds. There are also plenty of programs out there that simulate spectra based in structures you input, not to hard to come up with a decent guess on what the stuff is. In addition, he can get solid state NMR from the fibers for further identification.
So, he might be strictly speaking the truth about no known compound, but he should have a pretty good guess what it is, at least what group of compounds it belongs too.
#26 Pete D
May 15, 2009

Katalina – I have no idea what Dr. Wymore has done or not done without seeing the data and an explanation of his procedure. If Dr. Wymore and other scientists are keeping this to themselves, then purported Morgellon’s sufferers should be pretty pissed about that, no?

If he’s just trying to match spectra with those in a database I would not be surprised if he finds no matches. Many published spectra are not included in commercial databases for various reasons. If he published the spectra somewhere, I or our resident IR expert could look at it. Mu is right, the spectra will show what types of bonds are present in the material and NMR would help, too. This does not take long to do! If Dr. Wymore has not done any of this, then I would be suspect of any conclusions drawn about the fibers.
#27 LanceR, JSG
May 15, 2009

I’m going to take a wild stab at the answer here… Dr. Wymore and his co-”researchers” know full well what these mystery fibers are… but there’s no money/publicity/persecution love in announcing that it’s just lint. Common, ordinary, normal lint.

There has yet to be actual evidence of any of these “splinters” spontaneously coming from the skin. There has yet to be any even vaguely plausible explanation about from where they might be coming. We have a perfectly valid diagnosis, one that responds well to current technology. If it weren’t for greedy, dishonest, unethical scumbags feeding these poor sufferers with nonsense we could have this treated and fixed in rather short order.
#28 JustaTech
May 15, 2009

Out of curiosity, how much would a study of these patients, complete with analytical chemistry cost? I don’t work in chemistry, but I know that some assays cost much more than others.
And how many samples would you need to have statistical significance? 3 per person? 5? Over what time period? And how many patients would you need? 100? 500?

It’s very interesting. I wonder if there is some foundation that would support a study like this sufficiently that even if the only things found were lint it would still get published.
#29 CrystalRiver
May 15, 2009

I’m sure I would have no problem providing samples for someone who “honestly” wants to look and one who will use a test that is not predetermined not to discover. Yes, it sounds crazy doesn’t it; yet this is exactly what has occurred in the Lyme dilema with the Western Blot.

Than the researchers are often threatened–

Two gentleman from two different Morgellons groups died within two weeks of each other with massive heart attacks. These two men were both 53 years of age, both worked as PR persons in their respective groups. Does anyone know the odds of this happening?

Many of us after long years of frustration with the medical community began to research on our own–tell me what you would do if you were very ill and no one was helping? Give us something better, do you have a better answer?

The replies here have been stated to be leaning towards the scientific but really they are just questions aren’t they–no real science.

I appreciate JustaTech’s inquiries with sound questions.

As far as being angry at any of the researchers for becoming quiet; I’m not. I find it more productive that they continue the studies in quiet if need be until they have enough to give those with this condition a direction.

Dead researchers really have no ability to help the living.

Wouldn’t it be fun to just debate this subject and than walk away and leave Morgellons behind you; that would be grand; how lucky some of you are.

Are the fiber specialists here concerned that their product has recombined with something else and has now caused pain for others?

It would be nice to know what the fibers are, it would be nice to know what causes the crystals to form and push from the body, and it would also be nice to know what the black oil coming from our bodies is composed of.

Do you recall the testing at the FBI database? Here is the link with information on that study. Perhaps you folks here could help them out with their job.

http://www.cherokeechas.com/fibers.htm

It seems to me that some of you posting here have enough smarts that you could put this together and solve the puzzle. You would most likely win a nobel prize.

Personally the discussions that have included groups like Morgellons Watch that have been set forth to simply debunk this condition are quite insulting and interesting at the same time. Who goes out of their way to create a site to debunk a conditon? Was their payment involved or was this just fun for them?

Just from perspective of logic one has to ask the above questions.

May we all be blessed with the truth.
#30 llewelly
May 15, 2009

“non-drug non-herbal non-homeopathic non-allopathic dietary supplement the patient was ingesting.”

Water?

Nope. bengt already said it was non-homeopathic, so that rules out water.
#31 Gwen Simmons, RN
May 15, 2009

# 25 Pete wrote at May 15, 2009 1:14 PM “…I have no idea what Dr. Wymore has done or not done without seeing the data and an explanation of his procedure. … Many published spectra are not included in commercial databases for various reasons. If he published the spectra somewhere, I or our resident IR expert could look at it. Mu is right, the spectra will show what types of bonds are present in the material and NMR would help, too. This does not take long to do!…”

Pete, if this is a real offer, I accept. Please contact me directly at sunnyand7777@yahoo.com. We can confirm the details for the actual meeting, etc.
Thank you so much!

Gwen Simmons, RN
#32 Lynne Haulbrook
May 17, 2009

This is the absolute truth:
I hadn’t planned to mention any of my bizarre symptoms to the doctor. I’d tried with half a dozen, and they invariably came up with the lovely diagnosis of DOP, even though I’d never once mentioned anything close to the term “parasite.” But there I sat, talking to the doctor, when I felt that all-too-familiar sensation on my forearm. I looked to confirm what I knew was occurring, then I pointed at the thin, string-like black substance protruding from my skin. “Do you have any idea what this is?” I asked. “I’ve had an issue with this for a couple of years and I suspect it has something to do with these sores on my face and arms that have been here since then as well.” “No,” the elderly GP answered, “but it shouldn’t be too hard to find out. I could send it off to a lab for analysis.” He removed it and told me he wanted to look at it under a microscope first. “Well, that beats all!” he said when he returned. “Looks for the world like textile fiber. But it came out of your arm! Now I’ve just got to figure out where to send it to.” I nearly cried of joy. Two weeks later, however, when I had heard nothing of the results, my telephone inquiry to to doctor’s office resulted in a response that would turn the most trusting soul into a conspiracy theorist. Here’s how it went:

The nurse: “They couldn’t test it.”
Me: “What do you mean?”
Nurse: “There was nothing there.”
Me: “What? It disintegrated?”
Nurse: “It’s gone.”
Me: “Like, you sent it to the lab, they opened the vial, and it was gone?”
Nurse: “They said they couldn’t test it.”
Me: “Wait, you said there was nothing there. Now you say they couldn’t test it. Where did you send it to? Is there a specimen number or something associated with it. I want to call them.”
[pause]
Nurse: “We never sent it.”
Me: “What?”
Nurse: “It wouldn’t have lasted. There was no way to preserve it.”
Me: “How do you know that, when you don’t know what IT is?”
Nurse: [agitated] Look, they couldn’t test it, ok?! There’s nothing else we can do for you.”
Me: “But he promised. He promised he would find the right lab to send it to. Where is the sample, if you didn’t send it off, then where is it?”
Nurse: [REALLY agitated] “Look, we threw it away, ok? It’s gone. Now I have work to do.” [click]

Somewhere between that kind, reassuring doctor offering to help, and my phone conversation with the nurse, somebody slammed on brakes. That’s all I know. (Well that, and the nurse is not the best liar in the world.)
#33 GRiven
May 17, 2009

To Paul D and/or Mu

My Wife and I suffer from this condition and would be willing to send you samples of the “black specks” that emerge from intact skin. Under the microscope they look like a tangle of fibers. Please contact me or post here on how you would like the samples collected.

If you would like, we live close enough to Michigan that we
could go see PalMD and let him collect the samples for you.

We have found that putting certain things on topically (like
A&D ointment) can bring the “black specs” out on demand.

This way PalMD can witness this and collect the samples.

PalMD will have my email address from this post.

Guys, I’m just your average Joe. I don’t know how I got this, I don’t really care where it came from…..I just want to get better and get my old life back.
#34 Eofhan
May 18, 2009

Dr. Sagan’s The Demon-Haunted World, indeed.
#35 PalMD
May 18, 2009

There seems to be a belief that I’ve been censoring comments on the morgellons threads. This is not so. I welcome (almost) all comments. If you feel you’re comments are missing, please email me so i can let them out of the spam filter.
#36 Pete D
May 18, 2009

GRiven – I am working something out with someone right now. We’ll see how that goes first.

Mu – if you have some spare time would you like to participate?

PalMD – you have my email address and can give it to Mu if he wishes to contact me.
#37 PalMD
May 18, 2009

I’m happy watch my commenters communicate with one another, but i will not become personally/professionally involved in the medical issues of readers.
#38 Pete D
May 18, 2009

OK then…I have set up a gmail account to handle email about this. It is pxrdman@gmail.com .

Mu – if you want to do anything, just let me know. I haven’t even decided if I can do anything yet myself as I need permission to use the analytical equipment for non-work related projects.
#39 JohnV
May 18, 2009

Good luck with this Pete. Comment 29 suggests, however, that if you don’t provide the answer that people are looking for, you’ll be accused of dishonesty (conspiracy-y stuff, being a pharma shill, alien hybrid bounty hunter sent to disrupt the government plan to convert humans to alien food, etc) (ok that last one was stolen from x-files).

This does make me long for the fun times in grad school when I got to use the FE-SEM for hours at a time looking for stupid 3 nm wide fibrils on the surface of bacteria.

sighhh the good old days
#40 Pete D
May 18, 2009

Yeah JohnV… in grad school I would have been able to this in a heartbeat. If I do get a chance to look at the fibers all I can say is what the fibers are (or aren’t). I have no idea what the actual source of the fibers is or how they were made. Well, unless they are just from textiles or some other environmental source.
#41 LanceR, JSG
May 18, 2009

“non-drug non-herbal non-homeopathic non-allopathic dietary supplement the patient was ingesting.”

Water?

Nope. bengt already said it was non-homeopathic, so that rules out water.

But homeopathic water has to be ~~shaken hard~~ succussed. So non-shaken water wouldn’t be homeopathic, right? Or am I confusing my mythologies again?