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.
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medsmex.com
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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.
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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.
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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

“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.

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

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

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.

© 2012 Morgellons Watch Suffusion theme by Sayontan Sinha