Lymebusters

Antibiotics

279pill_man_lores.jpgSuppose you have 10,000 people who have self-diagnosed themselves with a mysterious disease that causes horrible itching, and makes you think fibers are emerging from your body. In many cases they have been diagnosed as delusional, and have been unable to work with their doctors in finding effective treatments. These people have very frustrated, and angry at the medical system.

Suppose then an organization comes along, and tells them that they are absolutely not delusional, and they actually have a “newly emerging infectious disease“, and if they are “given appropriate antibiotics long enough” it will “resolve most symptoms“. and that “the treatment presently most successful is antibiotics.”

Two members of this organization even run a clinic to sell these antibiotics for “long enough“, but their services are very expensive, and these two people are just about the only people in the country who sell this treatment, so most of the sick people either can’t afford it, or can’t travel to see them, so these two only sell their treatment to perhaps 200 people out of the 10,000 who self-diagnose.

So what are the other 9,800 going to do? Many of these people were diagnosed as delusional (in addition to whatever other physical symptoms they have), they then self-diagnosed as having “Morgellons”, after reading about it on the internet. They then read on the internet that “Morgellons” can be effectively treated with antibiotics.

So it’s quite obvious what self-diagnosing people are going to do. They are going to self-treat. They are going to buy antibiotics, and they are going to take them. They are most likely going to harm their health in the process.

Sure, antibiotics are prescription only, and with good reason. But creative minds can find them on the internet, or other places. Take this recent thread titled “how do u get antibiotics for so long“. Some of the answers were:

Find a MD to prescribe tetracycline for “ROSEA” then you can get on it long term.
Most women have it. The MD would not prescribe ATB’s for me for LYME or Morgellons,
but said, OK, you have Rosea and I can do it for that.

Also, from mexico, I order Flagyl (NAME BRAND) which fights protozoa and used in ob/gyn settings for chlymadia. Tetracycline and Flagyl [Metronidazole] work together and compliment each other.
——————————————-
medsmex.com
——————————————-
Here are a couple of more sites for antibiotics without a script:
http://www.aclepsa.com/
http://www.drugdelivery.ca/
I have ordered from both places, you should just do a search for the type of antibiotic you are looking for, there are a bunch I found on Google.
——————————————-
I talked my old doctor into prescribing doxycycline for two years based upon Dr. Garth Nicholsons treatment for CFS, I have FMS. I took it for 1 year 9 months. If helped a lot but hard on stomach. All my symptoms are back.
——————————————–

and in another thread:fish-cillin.jpg

I haven’t tried [Tetracycline ] but I know I can get it at the Feed Store (morgellons pharmacy)

Note that the “Feed Store”is referred to as the “Morgellons Pharmacy”, because you can buy antibiotics at the feed store that are intended for livestock. This is something that is well known in the chronic Lyme community, and has hence been transferred over to the Morgellons community. Anti-parasite drugs such as ivermectin can also be found at the local feed store, and are also consumed by people who think they have Morgellons. You can buy some antibiotics (like Ampicillin, sold as “Fish Cillin”) at the pet store in the mall. You can even get these antibiotics on Amazon.com, see also: “Fish Cycline” (Tetracycline), “Fish Zole” (Metronidazole) and several other types of “Fish” antibiotics. Read the comments, nobody seems to be buying it for fish (or birds, if you want Sulfamethoxazole)

So what you have here is a lot of sick people who do not know what is wrong with them, who have somehow self-diagnosed themselves with a disease that practically no doctor thinks is real, and then are self treating themselves with a treatment that almost no doctor would recommend. They find ways to buy these drugs, either from Canada or Mexico, or they take antibiotics nominally labeled for fish.

It’s a major public health problem. Self-diagnosis and self-treatment (for months) with antibiotics for these 10,000 people means:

1) Their actual conditions, physical and/or mental, are going untreated
2) They will suffer from side effects from the antibiotics, possibly serious, which will add to their sickness, further complicating correct diagnosis, as they are taking these antibiotics covertly.
3) They increase their risk of developing antibiotic resistant infections, such as MRSA, and contribute to the overall growth of these “superbugs”.

Sadly the Morgellons Research Foundation, the New Morgellons Order, and Oklahoma State University are greatly contributing to this problem by promoting antibiotics as a treatment, before anyone has even discovered a disease.

Related Links:

http://aquaticpath.umd.edu/news/#anchor14215930

http://www.defenselink.mil/news/newsarticle.aspx?id=43579

http://www.cbc.ca/news/story/2002/07/18/fish_antib020718.html

http://abc.go.com/primetime/accordingtojim/episodes/2007/11.html

Whither Morgellons?

“Morgellons” is the name Mary Leitao chose for what she considered to be a mysterious new illness afflicting her son. Doctors told her it was just eczema, and that the fibers she found on his lip were just lint. But she was determined it must be a novel new disease that she personally had discovered, so she set up a foundation to publicise it. Eventually, via the internet, other people join her organization, the list of symptoms constituting “Morgellons” is expanded to include these new people. Eventually the list of symptoms becomes very broad, and encompasses just about any medical condition. Doctors reject “Morgellons”, since the symptoms are explained by other diseases, and are too varied and vague to constitute a working definition of a new disease.

But the “Foundation” continues on its mission of “raising awareness” of “this disease”. With lots of hard work they get some press coverage, then some local TV coverage, and then eventually some major TV coverage. Each time the story is the same. Some patients are presented who are obviously ill. Their doctors have told them Morgellons is not a real disease, and the fibers are just lint or hair. Wymore says it is a real disease. The CDC is investigating. The end.

viz.png
As you can see here, Morgellons was a short-lived phenomenon. The local media coverage spurred interest which faded away. The CNN story spurred some interested, but was limited by the audience. Finally two huge spikes surround the networks morning shows and the “Primetime” special, then nothing, it tails off to zero after the next two months.

So what’s going on? Was Morgellons just a product of a media desperate for news during the silly season? The MRF supplied them with an interesting sounding story, and they ran with it? Then what happened? Where did Morgellons go?

People are still sick, that’s for sure. People are still going to the doctors with excoriations, and with itching, and with fatigue, and with baggies of fibers. That’s not going to stop. There are a variety of reasons for that, and those reasons are not going away.

But “Morgellons” has gone away. It was a label someone decided to put on a bunch of symptoms without any evidence to indicate that anything unusual was happening, and contrary to the opinions of the entire medical community. A few people publicised it very well for a period of time. The media ran the story, but now they’ve “done that”, and there will be no more stories.

Save the inevitable CDC report on “insufficient evidence”, the inexplicable advocacy of Professor Wymore, and the interminable and sad believer’s theories on Morgellons discussion boards, Morgellons is over.

Morgellons is over, but people are still sick. They are probably more sick now than when the MRF started their media campaign. By popularizing “Morgellons” as an actual disease, it gave validity to those who disagree with their doctors, self diagnosed, and chose inappropriate treatments. Morgellons is over, but the damage is done.

MRF Accounting Problems

Post on Lymebusters from Dr Greg Smith, Medical Director of the Morgellons Research Foundation 8/2/2006, around 10 or 11 PM, PDT :

It is with heavy heart that I write this note. I have been associated with the Morgellons Research Foundation as a member of the board of directors and Medical Director for almost two years. What has come to pass has saddened and troubled me. I am especially upset that I recently posted a note on Lymebusters asking Morgellons patients and their family and friends to donate to the MRF. It was, and still could be, an exciting time for all of us with this disease.

` Unfortunately, several events over the last month have disturbed me to the point I must retract my previous letter asking for donations to the Morgellons Research Foundation. I ask that you do not donate to the MRF. Instead, donate directly to Oklahoma State University to help fund the research being done by Randy Wymore.

I make this request because I cannot assure you the money you donate would be used appropriately in the fight to understand and conquer this disease.

My wife, Judy, had agreed to become Treasurer for the foundation. We decided it would be prudent to review the financial records and bank statements of MRF before she accepted that responsibility. I felt this was important to protect ourselves and to become familiar with the accounting system being used.

Mary Leitao has thus far not allowed me to see those documents! She said the MRF attorney was revising the by-laws and she would forward when completed. But I could see no reason she should not be able to send the financial information.
As I cannot review the documents, I cannot say that donations to MRF are being used appropriately to investigate the bizarre disease from which we suffer!

Another major concern I have is the apparent lack of desire by Mary and a few others on the Morgellons Research Foundation board to structure the foundation on a more business-like model! Even though MRF has been incorporated and has a board of directors, the decisions of the board seem unimportant to those individuals who have been with MRF the longest. Specifically, Mary, Doug Buckner, and Ken Cowles have recently made decisions which were in opposition to the direction and majority votes of the board of directors or which should have been made by the board.

I have served on a number of boards of non-profit organizations. This is the first time I have felt the board was only a formality and business decisions were made by individuals such as the Executive Director regardless of the board decisions and votes.

I found to my amazement that Mary seemed to expect all board members to agree with her and rubber stamp her decisions. When I disagreed with her, she became upset and angry. The adolescent “drama’ which has ensued has been emotionally draining. Worse, that energy would be better spent trying to understand this disease and educate the public and the medical community about it.

This is not the first time I have experienced the emotional and, to me, rather irrational response Mary has exhibited when someone affiliated with MRF disagreed with her. It is tragic that Mary reacts in that manner, as she now seems to view me and some others at MRF as her enemies. Yet I had been her staunch supporter and will always feel a debt of gratitude to her. MRF was a beacon of light and sanity for me early in my Morgellons journey!

Personally, I remain committed to doing everything I can to further our common goals! But I cannot expend my energy on peripheral, emotional issues. I do not know if I will be welcome at the MRF in the future. Nor do I know if I even am willing to again be associated with the foundation. But I remain committed to “the good fight” for my health, my wife, and all Morgellons patients.

I wish to emphasize I have no evidence of wrong-doing by anyone at MRF. But since I was not permitted to review the financial records (which felt very, very odd!), I cannot in good faith ask anyone to contribute to the foundation.

My best and warmest regards to you all! Remember: FORTITUDE!

Greg Smith
(Gregory V. Smith, MD, FAAP)

Post from Cliff Mickleson, also emailed to me:

New and alarming reports have recently begun to circulate concerning financial irregularities and mismanagement of funds at the Morgellons Research Foundation.

The emerging potential scandal and its attendant controversy is currently focused on alleged malfeasance of office and misappropriation of donated funds by MRF founder and Executive Director, Mary Lieto.

According to sources close to Board Chairman Charles Holman, Ms. Leito has consistently refused to produce financial records or to account for a large number of donations bequeathed to the foundation by donors.

This, despite repeated requests by Board members,

The missing financial records being sought cover a span of several years.

“We are doing all that we can to account for the donations made to this organization” Says Holman:

“Unfortunately, Ms. Leito is not cooperating in this effort to provide accountability to the public who’s trust she was charged with.”

Mr. Holman’s office reports that they are extremely concerned that they have been unable to recover any record of donations personally received by Ms. Lieto for the year of 2004.

Board members are also seeking access to financial records for subsequent years including, and up to, year 2006.

According to MRF Board members who have been contacted concerning this issue, no records whatsoever have been released for public examination by Ms. Lieto.

“She has consistently refused to return phone calls made to her by Board officers,” reports Dr. Greg Smith, another member of the MRF Board of Directors.

“She also has refused all pertinent information requested by the Foundation’s Treasurer” He added.

A spokesman for several of the officers of the Board of the Morgellons Foundation relates that an official IRS investigation of potential civil and criminal activities on the part of the executive Director and Founder Mary Leito and several others, may soon be under way.

-Cliff Mickelson

Both these posts were deleted from Lymebusters, reposted and deleted again. Other members of the MRF commented

Hey, there, Cliff..!

Hope your post can stay up (this time)….

Charles E. Holman
Chairman, MRF

Cliff, you are right on the money with this one! Thanks for posting and for making public what should have been made public long ago.

Folks, if any of you are making donations…sending it to OSU is the safest bet until the MRF is audited and forced to be lily white.

What’s sad is that they have to be forced!

Cindy Casey
MRF/NAP

Yep, it’s time to call Uncle Vinny! Not only are the financial records not being produced…They also seem to have turned on the medical people..the people that have helped them the most.

They have turned on me for encouraging folks to donate to OSU. Weird, huh?

Cindy Casey
MRF/NAP

White Fibers Fluoresce Blue under UV

Hardly rocket science, anyone who has been to a nightclub in the past thirty years would have noticed that white clothing fluoresces blue-white under UV lights (UV, Ultra Violet, Black Light, Woods Lamp, same thing). Particularly white cotton, including the white fibers in denim jeans.

Yet, Time Magazine says:

Dr. Gregory Smith wants people to know it’s not all in his head. According to the Gainesville, Ga., pediatrician, white fibers have been burrowing into his skin for the past two years, making him feel like he’s under constant bombardment from insects or cactus needles. Shine a black light on these fibers and they’ll fluoresce blue, he says, just like something you’d see in The Twilight Zone.

And the Morgellons Research Foundation says:

They are generally described by patients as white, but clinicians also report seeing blue, green, red, and black fibers, that fluoresce when viewed under ultraviolet light (Wood’s lamp).

It all started with Mary Leitao, who “showed the doctor how the fibers glowed under an ultraviolet light”.

So what’s going on here? Why does the MRF and their publicity department not know that practically all white clothing fibers fluoresce under UV light? Why do they keep repeating that their fibers fluoresce as if it’s something special?

If they can’t get that science right, something that is practically common knowledge, then what else might they have got wrong?

Here’s some white acrylic fibers at 200x, with normal and UV lighting.

flouresenct-acrylic-bottom-200x.jpg flouresenct-acrylic-uv-200x.jpg

Not like something out of The Twilight Zone, just normal clothing fibers.

Update (Aug 1st, 2006): For an explanation as to exactly WHY they fluoresce, see here:

www.techno-preneur.net/ScienceTechMag/july06/Fluorescent_brighteners.pdf

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.

and Statistics

I’ve touched on this subject before, but it keeps coming up in the media, so I’ll take the risk of repeating myself.

The Morgellons Research Foundation says:

Distinct geographic “cluster” areas of this disease have been noted near Los Angeles, San Francisco, San Jose and San Diego in California

It then shows a little map with those four cities highlighted, which makes it look like California is breaking out with acne.

cal-spots-copy.jpg

Recently people have been noticing ominous parallels between those four random cities and medical centers. Here’s what they say on the Morgellons Research Foundation’s recommended forum:

Three of these cities, San Francisco, San Diego and Los Angeles, are home to a University of California Campus that includes a major medical center teaching facility and extensive bio research facilities.

Three of these cluster cities have an additional second University Campus located within a fifty mile range with a medical school and extensive bio research facilities.

San Jose is located 16 miles from Stanford Medical/Research facility and less than 50 miles from the UCSF Medical Center

This worries the lymebuster – perhaps they think this indicates that Morgellons is some kind of escaped pathogen which was simultaneously released from all four of these facilities. Is there any other way of explaining this?

Here’s what the lymebuster has to say:

The first person I showed this to said there is no possibility that the relationship is random. I am looking for a statistician to calculate what the odds are of these common factors of Morgellons cluster cities being random or not.

As someone else on this board likes to say, I’m a duck if all these converging factors are just a coincidence. I bet the odds against this being random are about a billion to one.

Close. Let’s see, if there are 400 cities in California, four of which are clusters of Morgellons and four have a med school with a bio research campus, what are the odds of them randomly being in the same four cites?

About 25 Billion to one! Higher than their guess, and they were including Texas. So clearly this relationship is NOT random. There must be something going on.

Okay, I’ll spill the beans, there are the most cases of Morgellons, and the biggest medical schools and bio-research facilities in Los Angeles, San Francisco, San Jose and San Diego because:

THAT’S WHERE EVERYONE LIVES!

Top ten California cities by population:

1 Los Angeles 3,819,951
2 San Diego 1,266,753
3 San Jose 898,349
4 San Francisco 751,682
5 Long Beach 475,460
6 Fresno 451,455
7 Sacramento 445,335
8 Oakland 398,844
9 Santa Ana 342,510
10 Anaheim 332,361

The Morgellons Research foundation is just tossing out meaningless sound bites for the evening news, and their fans at Lymebusters are concocting fantastical stories around these McStatistics.

The Trouble with Cotton Socks

A few people on Lymebusters have problems with their socks:

BLW
I threw away my shoes and wore old socks and treated my feet with tea tree oil. This seemed to stop the pain.Yesterday I put on a laundered, fairly new pair of cotton sweat socks. I think I got them recently from the Dollar Tree store. Wow, my foot pain came back and feet started peeling on bottom.Also, when I did my castor oil rubs on my arms last night, I started getting out ‘white, cotton looking’ fibers instead of my normal black ones. Like the socks had entered my system.

H
I was applying a lot of different creams prescribed by the dermatologist and thought that what was happening was that the material from my socks was being caught up with the cream and being drawn into my foot. However, it is definitely being absorbed as a couple of weeks back I wore a pair of black socks with purple heels and toes – that evening when I was getting undressed a purple fiber about an inch long and quite substantial emerged from my heel.

JH
Just a suggestion, but drop the socks into boiling water before ever wearing them, then wash with borax and machine dry

B
For a while I wore plastic zip lock bags (cut to fit like a sock)over my socks so as not to keep contaminating my shoes. I also started throwing away my socks each day. I have been spending a bundle on socks. […] Now, however, a new situation has developed. It is minor compared to the previous foot infestation. Each night when I take off my white socks to throw them away, there are all these pieces of cotton fiber from the socks in webs between the toes and even balled up knots of sock fiber.It is not the sort of thing one goes to the doctor to show and tell,but each night it strikes me as very odd. First of all, the fiber is not on the top or bottom of the foot where the sock torches the foot but rather it is in between the toes. Maybe a single piece of fiber could go between toes occasionally. But every night to find a network of sock fiber BETWEEN the toes suggests some unaccounted for activity happening on my feet at the toe area.I do not wash these new cotton socks before wearing. I have never washed new socks before the first wearing. I have never had fibers stuck in webs and balls BETWEEN each of the toes. […] Yes, I have worried that the fibers are being drawn into the foot by these microscopic critters. They are definitely pulling fibers out of the new socks and practicing their knitting between my toes.

BC
Our shoes and socks were very infected with the white and black balls and fibers. We got news shoes and Gold Toe socks that are kinda thin with lots of nylon. I spray my feet, shoes, and socks with Woodward’s Diabetic Basics Instant Foot Sanitizer with benzalkonium chloride. This works pretty well but I still have toenail fungus.

22
My elderly friend with morgs bought some micatin spray from Dermatechrx and sprays it on her clean socks inside out the night before. It was on sale or she would not be doing this. She has clipped all of the cotton linings out of her underpants carefully leaving the rayon or nylon ones and then after these are laundered, soaks them in rubbing alcohol in ziplock bags.

H
Lots of different and inspired approaches as per usual. I’ve been washing the socks in Borax and changing them a few times in the day but didn’t wash them when new. At night after applying Special No 1 ointment, prescribed by dermotologist, I then apply petroleum jelly to create a seal. This has been quite effective in healing some of the lesions so I’ve tried this during the day too but the tingling persists.

QH
First of all – anything that comes into my house – if it’s fabric it gets sprayed with ammonia. New clothes get washed with a half-cup of ammonia added to the detergent. I don’t have carpets or curtains anymore. No fabric furniture. But do use blankets, and have had to get new mattresses (sprayed with ammonia)Every load of laundry I do gets ammonia in the wash cycle, not just new stuff. And, because I do chores around horses, and they are constantly wiping their noses on me, blowing their noses on me, etc., I buy shirts at the thrift shop. I wash those with ammonia and am just fine with that. No problemo – no itching caused by the thrift shop shirts – ammonia fixes stuff for me.

BLW
The socks i have been buying really have a lot of loose cotton fibers and balls on the inside. Today, I picke the stuff off before I put on a pair. Three hours later, I peeled them off and looked inside. All the loose stuff had re-appeared. Much was sticking to my feet and liked the area between my toes. I am coming to the conclusion that these socks are alive.

CM
I was initially infected by new cotton socks right out of the sack that I did not wash first. There is little if any doubt that cotton is one of several of the more ubiquitous vectors for this thing.


I think what we are seeing here is the result of the culture of belief within Lymebusters. Nobody steps forward to suggest to B that it’s quite normal for cotton from new socks to collect between the toes. Nobody tells BLW that his socks are probably not alive, and everyone has experienced cotton balls and fluff on their feet from new socks. Nobody tells H that, yes, the fiber was probably just caught in your foot cream. Nobody tells CM that there actually is rather a lot of doubt that cotton socks are a vector for a novel pathogen.

I think willingness to believe others that some of the above people have, is paired with a willingness to believe themselves. Hence whatever idea pops into their head, they believe without question. Questioning themselves (are my socks really alive?) is tantamount to admitting they might have made some mistakes in other area, and perhaps an indication that they were deluded in some beliefs.

Socks are interesting since most people have two feet. It would be a very simple matter to perform experiments such as wearing a cotton sock on one foot, and a linen sock on the other for a week, and see if there is any difference. You could use this technique to test the various (“different and inspired”) sock treatments, such as ammonia, alcohol, bleaching, borax, boiling etc.

But is seems some people don’t want to investigate, to find the truth. They just want to believe.

This uncritical desire for belief is ultimately damaging their health.

The Trouble with Thrips

Thrips are tiny winged insects, around 1mm (1/32th of an inch) long.

This is what they look like, life sized (on a leaf, look closely):
xxvegadv112702fig1.jpg

And here is what they look like under a microscope

xxwesternflowerthrips.jpg

Here’s a photo of some thrips that a Morgellons believer found on her skin:

xxxthrips445f.jpg
(Compare the one at the bottom left with the one in the previous picture)

Thrips infest plants. A serious infestation can have hundreds, even thousands, of thrips in a plant. Sometimes thrips swarm, they fly, and can land on your skin and bite, which can be painful. They can apparently even create lesions that they can get inside, a condition described as Thysanoptera dermatitis.

So suppose you had a thrips infestation, perhaps just on a houseplant, or perhaps you live in an agricultural area, or you have an orchard. Thrips are tiny (they can easily get through a normal window screen) and very hard to see when they are in the air. If you are closely inspecting your skin, then when the thrips land on your skin, it will be difficult to see where they came from. If you have a fertile imagination, it might look like they have emerged from your unbroken skin.

Now within the Morgellons community, there are mixed opinions as to the involvements of insects in the disease. The opinions fall thusly:

1) There are no insects involved with Morgellons, and people should stop talking about them.
2) Insects are not part of Morgellons, but it suppresses your immune system enough to allow insects to nest in your skin.
3) Morgellons is an insect infestation, the insects either create the fibers, or use clothing fibers to create cocoons, and that’s what we should talk about
4) Insects are part of the Morgellons syndrome, but we should not talk about it, as it will get us labeled as suffering from Delusions of Parasitosis.

In its doctor approved “Case Definition“, the Morgellons Research Foundation says:
The sensations are at times related to the presence of easily seen insects

On Lymebusters (the online forum that the MRF recommends), the thread entitled “Morgellons, (collembola?)” sums up the every shifting attitudes of some Morgellons believers.

O
It distresses me every time that morgellons is referanced to insects –such as insects crawling out of the body—this tangent can really confuse those who are trying to understand the morgellon syndrom..I have NEVER, in any remote way, made any observance of bugs-flies-etc exiting my body or crawling underneath my skin…

P
The insect theory can be harmful to us if not presented in the correct manner. I believe there is an indirect connection, phermonally speaking […]

Q
Those that have the insects hatching are suffering a very bad aspect of this – they need so much support and especially to be believed and not rejected.

P
We never told anyone they couldn’t talk about it and I apologize again if it sounded that way. We just didn’t want people to place the main emphasis of this disease’s symptoms on that aspect of it, since that is where our skeptics are getting their ammunition to dismiss us.

Q
But to disarm skeptics, any mention of insects should include the fungal / various causes aspect. Any skeptic that can’t figure out that insects and fungus can be connected is A) not too bright B) has an agenda/sponsor or C) works at UoG

O
I wish to clarify my stance–no doubt that insects can lay eggs and hatch out of the hide-skin-of many animals—

H
My theroey is that the Morg attracts other parrasites. I have personally whatched a fly hatch and fly out of my leg and watched a white furry bug eat its way into my heal,

O
We all have fibers–etc=====or defined as morgellons,some have this manifestation others some other presentation..we can not define it down to say morgellons is caused by this or that—this is what I see–That is what you see–but we all see fibers, right?SOO, I ask, why are the fibers created by so many different things?

Here’s how one of the administrators of Lymebusters (who has posted his own photos of Thrips) explains his own pro-insect belief, and the diversity of what people are seeing.

AH
[…]every time I would get bit by something in the spot where I got bit there would be a fuzzball most of the time they were the color of the article of clothing in the area that that I found the fuzzball in If I was wearing white socks they would be white or if I had something red or blue the fuzzball would be likewise I cant speak for my comrade cult members but I think that the critters that are responsible gather the fibers around them like a cocoon
[…]
And I am not saying that we all have the same thing but there is a common denominator that we all have –and that is Doctors are giving us all a bogus diagnosis that we are stuck with so we unite under the same banner to fight it

(Note that AH is just joking here, when referring to the “cult”, he’s referring to another recent post)

So what is the problem with Thrips?

The problem is the assumption, almost the dogma, amongst Morgellons believers, that they all have the same “thing”. That there is some new pathogen that they all are infected with that causes all of their symptoms. Any new symptom that someone professes to have gets included in the long list of symptoms that are allowed under Morgellons. Anything too outrageous or unique gets explained as a product of a suppressed immune system. Any mental issues get explained as neurological effects of “this disease”.

The problem with that is that they obviously don’t all have the same thing. They have a wide range of symptoms. The one thing they supposedly have in common, the fibers, vary as much as the symptoms. On the question of insects – some have them, and some don’t. Again, some believers explain this as the insects taking advantage of a compromised immune system. But you can explain anything as the result of a compromised immune system.

The trouble with Thrips is that believers unquestioningly accepted that tiny bugs can be hatched in their adult form directly through your skin, if you have Morgellons. If you have Morgellons almost anything can be accepted, no matter how outrageous. The key thing many Morgellons believers want is “to be believed”. By being part of a community that wants to be believed, they support each other, and hence they believe each other, easily glossing over all inconsistencies.

Unfortunately, by believing everyone and everything, some of them abdicate reason, and this gets in the way of them receiving appropriate treatment for their very real health issues.

Why does the MRF recommend Lymebusters?

If you were registered with the Morgellons Research Foundation about a month ago, then you would have gotten an email from Mary Leitao, in which was stated:

“Please know that hope truly is on the horizon. Please do not poison your body with pesticides and toxic chemicals while this mystery is unfolding. You must remain as healthy as possible.
[…]
If you would like a place to communicate with others who have this disease, you can go to this message board, which is dedicated to Lyme and Morgellons.
http://lymebusters.proboards39.com/index.cgi

Best wishes,

Mary M. Leitao, Executive Director
Douglas Buckner, Ph.D., Associate Director Morgellons Research Foundation”


On the MRF web site, back from February 2005 , until the recent re-design, there has also been a link to the Lymebusters discussion board:

http://web.archive.org/web/20050226092207/http://www.morgellons.org/

Why does the the MRF recommend Lymebusters (and ONLY Lymebusters) as the place to discuss Morgellons? I’m really not sure – since a look at Lymebusters does not lend Credibility to the Morgellons case. Here are some representative quotes from the past 48 hours or so:

From Glennb
I also have the stabbing ones, usually the stabbing is in the region of the lower legs and ankles. I can pretty much control this by spraying natural insect repellant on my lower legs everyday. If I forget I get the stabs. Also spraying the carpeting lightly with cedar oil spray helps. These things also float around in the air. I have a big plastic spray bottle that is one quarter water and three quarters Everclear Grain Alcohol that I added grapefruit seed extract to, also added lavender and teatree essential oils. This makes a great spray to clear the floaters out of the air, also like to spray my sheets with it before I get into bed at night.

From Magnolia
[…] I sat down in front of the computer, turned it on and within 20 minutes I was being swarmed by stuff! I looked at the computer screen and saw the “things” that most of us have. The cube that I sat in was very dusty. So I got out the H2O2 and wiped everything down, wiped my face off, and the swarming stopped.

From l46cheetah
If a Dr wants to be in denial that something physical is wrong then he has to do it on his own time and without me in the room. I have fired about 15 Dr.’s for the way they talked to me . I finally got sick of it and started trying things on my own. Then my nurse friend sent me to her Dr friend and he listens and he is at least trying. I have been to 32 Dr.’s in 3 years.

From Flowerchild
You should see a big difference if you zap tonight, as the moon is full, and the parasites are active and easier to kill. Hanna Kroeger recommended going after parasites 5 days before the full moon until at least 5 days after, as that’s when parasites come out of hiding in the body to reproduce

From Belikewater
This current lesion, about 1 inch square on my lower right arm I brought on myself, by pouring bleach on a picked area. There was an instantaneous, very scary reaction. The skin peeled back in a flash. My first panicked thought was ‘flesh eating disease’ and I grabbed my colloidal silver and splashed it on the area. The peeling instantly stopped. Then before my eyes a weird thing happened. Instantly all sorts of black fibers, specks and what appeared to be semi-formed arthropod forms appeared in the wound, spaced a bit apart from eachother

These are not unusual posts. They are quite typical, and they go without comment. There are far worse posts in there, but I limited it to the last 48 hours, and left out the suicidal rambles.

So why is Lymebusters the semi-official discussion board of the Morgellons Research Foundation? It really can’t help their image.

Lymebusters, as has been noted several times in comments here, is not a very healthy place. It’s a place where people build and reinforce errant belief structures, and a place where vulnerable people can easily be snared.

How can the MRF say “Please do not poison your body with pesticides and toxic chemicals while this mystery is unfolding” and then two paragraphs later direct them to Lymebusters, where people discuss assailing their skin with bleach, Everclear, tweezers and worse.

Fiber test from a Lab

From “greta” at LymeBusters:


Scott F. Stoeffler, Senior Research Microscopist of McCrone Associates, Inc. “identified” my fibers. Got the actual bill today $820.00! They told me it would
be $600 charged on the credit card.

I got the written report too, my fibers were identified as follows: black wool fibers, red wool fibers, blue wool fibers, colorless wool fibers, colorless polyester fibers, a blue polyester fiber, colorless cotton fibers, blue cotton fibers, a pink acrylic fiber, and a green acrylic fiber. They were examined by polarized light microscopy. He sent one photomicrograph depicting typical woolen fiber from one of my samples.

And from “Sidney”


The NPA worked with McCrone’s – Chicago, back in the 90’s, when Dr. Walter McCrone was still living, interested in the fiber-skin issues, and either Dr. McCrone or Dr. John Shane, McCrone’s chief researcher at the time, designed a protocol for us to follow. Participants strictly adhered to the protocol. As I recall there may have been twelve of us who submitted “specimens” to McCrone’s Research Laboratory.Shower, shampoo, air dry, no towels, no hair dryers, no sitting on upholstered furniture during the process of combing and collecting from our skin.Results same as yours! Various fibers identified by content and color including Flax, Wool, Lycra, Cotten, Polyester, etc.

Thanks for sharing this information and naming the lab involved. Maddening that it was such an expensive process for you. I recall that it was an expensive process, but the amount you were charged is outrageous.

Okay, so a whole bunch of people had their fibers tested, under fairly rigerous conditions, and the results were that the fibers were regular household fibers.

Yet the response is simply to deny the results, and complain about the cost. Why would the labs make up results? Seems like the submitters had already made up their minds about the fibers and were just seeking validation.

Fibers are everywhere. They float in the air and land on you after showering, and they also remain on your skin even after showering.

Here’s McCrones:

http://www.mccroneassociates.com/techniques.html

Seems reasonable to me.