New story on Morgellons disease

Every couple of months, it seems, comes a new media story on Morgellons disease, a “mysterious ailment” in which

Most individuals with this disease report disturbing crawling, stinging, and biting sensations, as well as non-healing skin lesions, which are associated with highly unusual structures. These structures can be described as fiber-like or filamentous, and are the most striking feature of this disease. In addition, patients report the presence of seed-like granules and black speck-like material associated with their skin.

Sounds like something that’s right up my alley of interest, but I’ve not written anything on it yet. This isn’t because I’m not interested, but simply because there’s hardly anything in the biomedical literature about the disease–if it’s even a disease at all. Nevertheless, the Chicago Tribune has a new story on the topic, detailing some of the difficulties that come with deciding if it’s a real ailment at all, and if so, how to study it.

Thousands of victims concentrated in Texas, California and Florida claim to be afflicted by the debilitating malady, for which there is no known cause and no certain cure. One young Austin man apparently committed suicide when the agony grew too acute, while many others, spurned by disbelieving doctors, are suffering in silence.

But whether the symptoms constitute a frightening new disease suddenly surfacing across the nation, or a case of mass hysteria abetted by Internet message boards and breathless local TV news reports, is a question that experts at the federal Centers for Disease Control and Prevention in Atlanta are urgently trying to answer.

“We don’t know yet what it is, so our first aim is to try to characterize it scientifically,” said Dan Rutz, a CDC spokesman. “There’s a concern that there’s an infectious process going on. It would be very disturbing from a public health standpoint if that turns out to be case. We don’t have any evidence to support that, but we are approaching this with an open mind.”

Those who claim to suffer from Morgellons–or know those that do–have been highly critical of the biomedical community’s response to reports of the illness. Some think it’s completely made up; others think something biological is indeed going on, but they have no idea what.

Morgellons victims have no doubt that the joint pain, fatigue and self-described “brain fog” they are suffering is real. From the crusty lesions that break out all over their bodies, they say they routinely yank blue, red, black and translucent filaments, some of them as long as an eyelash and others visible only under a microscope. Sometimes, instead of fibers, they extract small black granules resembling tiny peppercorns.

“When the lesions and fibers appear, it feels like there’s something stinging you from inside your skin,” said Stephanie Bailey, 35, an Austin resident who’s on medical leave from her job with the state environmental agency. “It sounds so unbelievable that people just think you are nuts. But this is not something I am making up.”

Yet that is precisely what skeptics insist the Morgellons sufferers are doing.

Some experts in dermatology and psychiatry say the hallmark traits of Morgellons–the crawling sensations, the mystery fibers and the penchant of sufferers to obsessively collect samples of the granules and fuzz to show their doctors–closely resemble a well-known psychiatric condition known as delusions of parasitosis, the belief that tiny bugs are burrowing beneath the skin.

The lesions are self-inflicted, caused by incessant scratching at the imagined parasites, the skeptics insist. The fibers are nothing more than lint from clothing, tissues or bandages. And the hypochondria is being spread thanks to sensational “sweeps week” TV news reports and Web sites, which reinforce the beliefs of psychologically vulnerable people that they have contracted a new disease.

The attention the disease has received via sensational reporting also makes it more difficult to know if it’s real, or if, as suggested, it’s just a psychiatric condition. One skeptic runs a website called Morgellons watch, where he has one post describing fibers in a tissue sample. However, he notes the samples came from his own healing pimple, and the fibers are simply clothing fibers. Is this the case with many Morgellons sufferers? A MD PhD who ~~runs~~ serves as the research director of the Morgellons foundation says it’s not, and that the fibers he’s uncovered in patients “aren’t just environmental contaminants.” How he tested that, though, isn’t mentioned in the article.

In all, I think it’s a fascinating area, whether it’s actually due to some kind of novel agent, a psychiatric ailment that’s been fueled by media interest and reporting, or something else altogether that hasn’t been suggested yet. Either way, let me make a prediction. If it’s concluded that it’s not really something novel, you can be sure that there will be allegations of scientists being too “closed-minded” to recognize it as a disease. If it’s concluded that it’s actually a new disease, potentially caused by an infectious agent, there will be allegations that scientists are “fear-mongering” or just making up a new disease to sell drugs.

Comments

#1 Laura
July 26, 2006

Thanks for the article. I heard on one story awhile back that a doctor determined that the filaments have plant DNA. Have you heard anything on that?
#2 Tara C. Smith
July 26, 2006

Laura,

I’ve not seen anything credible regarding that claim. Do you remember where you heard it?
#3 Dave S.
July 26, 2006

I’m sorry Tara, but the Padian paper does not show a single seroconversion to Morgellons disease, therefore it must not exist.
#4 quitter
July 26, 2006

You are opening a can of worms here Tara.

Morgellons is the newest disease in the Fibromyalgia/Chronic Lyme/Chronic Fatigue/Crazy-person axis. It is clear that it is a form of delusional parasitosis, and it’s feeding on the same population of crazy. I wouldn’t get them riled up if you can avoid it. Leave it to the poor souls at morgellonswatch.
#5 Laura
July 26, 2006

Tara,

I believe I saw it on CNN I know its not the most credible source for info. I just did a search and I didn’t come up with any info on it so I was curious if you heard about it.

Is Lyme disease really in question? I thought that could be confirmed with testing.
#6 qetzal
July 26, 2006

Odd. Once, as a kid, I noticed a small granule very much like a small black peppercorn embedded in the surface of my upper arm. At first I thought it was just a slightly raised mole, but when I picked at it, it came out readily, leaving a cavity that didn’t bleed. The thing was maybe 2-3 mm across, roughly spherical, mostly dark but with some variation in shading. It still creeps me out to think about it.

I never found another such granule, and I’ve never suffered any of the other symptoms described above. It may well have been some foreign body that somehow got embedded in my skin, but it definitely didn’t seem like that at the time.
#7 Dave S.
July 26, 2006

Laura –

I think you’re right about Lyme disease. It’s caused by a bacteria, Borrelia burgdorferi, transfered from the bite of an infected tick. It can be seen in lab tests, but usually treated (with antibiotics) by correlating symptoms (e.g. expanding rash, fatigue, chills) with possible exposure (e.g. walking in know infected woodlands). The ticks often hitch rides on deer, although the bacteria are mostly maintained in rodent populations.
#8 Tara C. Smith
July 26, 2006

Morgellons is the newest disease in the Fibromyalgia/Chronic Lyme/Chronic Fatigue/Crazy-person axis. It is clear that it is a form of delusional parasitosis, and it’s feeding on the same population of crazy. I wouldn’t get them riled up if you can avoid it. Leave it to the poor souls at morgellonswatch.

I disagree that it is clear, and I also wouldn’t include all those you mentioned above in with “crazy people.”

I think it’s most likely that Morgellons is, indeed, a psychiatric condition rather than some bizarre type of infection, but I think it’s a good thing that it’s at least being systematically investigated.
#9 quitter
July 26, 2006

Ahh, definite signs you guys haven’t really seen the crazy side of medicine if you haven’t heard of chronic lyme. Chronic is the key word.

Yes, Lyme disease is a real disease caused by a spirochete, I’ve actually met Dr. Steere who discovered the disease. Now he has the most secure lab on his campus because people send him death threats, for of all things saying that you can’t have lyme disease without the causative agent present, b. borgdorferi. That is what the chronic lyme people believe, and that they need long timecourses of IV antibiotics in order to treat their chronic lyme after they had already been cured by tetracycline.

Then you find people complaining about chronic lyme disease in areas of the country where lyme hasn’t gotten to yet, who were never seropositive for the infection, but swear to god, they and their whole families have lyme disease and need IV antibiotics because they read their symptoms sounded like chronic lyme on the interweb.

Read that linked NYT article, and then talk to some of your MD friends about the so-called dustbin diagnoses – fibromyalgia, chronic fatigue, etc. You’ll find out that lazy doctors, tired of dealing with a patient demanding an explanation for what is probably a result of a psychiatric disorder, throw them these diagnoses just to get them out of the room. There probably are patients who suffer from each of these diseases for real, probably as a result of some sort of post-infectious autoimmune process, but the signal to noise ratio is all screwed up from doctors dumping these diagnoses on their difficult patients just to give them an explanation of their symptoms. You’ll never find the real disease now though through all the people that have been diagnosed out of sloppiness and impatience.
#10 Brian Prince
July 26, 2006

I’m a fiercely skeptical person, but I started having constant pain in my skin and muscles (no joint pain though) about two years ago, and the only diagnonsis my doctors could offer was fibromyalgia. I’m a happy, healthy person otherwise. I know what normal feels like, and what I’ve felt for the past couple years isn’t it.

Based on the reading I’ve done, it seems obvious that there are multiple unrelated or barely-related disorders (some of them psychological) being crowded under the fibromyalgia umbrella. When you’ve got one group that only responds to SSRIs, another group that only responds to opioids (that’d be me), a third who are probably just out of shape, a fourth who respond to antinflammatories . . . as a patient, and as a critical thinker, that’s a really frustrating pot to be thrown in.
#11 Brian Prince
July 26, 2006

To get back on topic, has anyone considered a possible causitive link between excessive X-Files viewing and Morgellon’s Disease?
#12 Laura
July 26, 2006

Dave-
Thanks thats what I thought.

Quitter-
I see your point now. I have heard of people demanding antibiotics with virtually no risk of exposure.
#13 Laura
July 26, 2006

Brian

In the search I did earlier I did see a reference to it being caused by aliens and or Thimersol and aluminum.
#14 quitter
July 26, 2006

That’s what makes these diagnoses especially frustrating. Both my parents are MDs, and when I encountered the subject in medschool I remember asking their opinion of the disease, both of them had a fair amount of contact with chronic fatigue and fibromyalgia patients and asked them what they thought it was diagnostic of.

Their responses were along the lines of bad doctors, bad medicine, crazy people (often borderline and antisocial personality disorders), and somewhere in there, a small subset of people with an actual physical disorder. My dad’s response was the best, he said the universal trait of all of these patients is that they hate doctors. Probably from being shifted around, thought to be crazy (sometimes with good reason), misdiagnosed, then finally dumped into a diagnosis that doesn’t help you identify a clear treatment or specific problem. Hence “dustbin” diagnosis.
#15 frank schmidt
July 26, 2006

I think the issue is our failure to understand the organic causes of psychiatric disease. An unfortunate legacy of Freud, IMHO. Ascribing diseases like Morgellons, CFS, Gulf-War/Agent Orange to “craziness” makes no more sense than ascribing them to witchcraft.

Physical manifestations of disease have a physical cause. Period.
#16 Michael
July 26, 2006

Tara said:

A MD who runs the Morgellons foundation says it’s not, and that the fibers he’s uncovered in patients “aren’t just environmental contaminants.” How he tested that, though, isn’t mentioned in the article.

Tara, you are referring to Randy Wymore, PhD. He’s not an MD, or a physician of any sort, he’s an assistant professor of pharmacology and physiology. He does not run the Morgellons foundation, he’s the the “Director of Research”. All that has happened is that he has found some fibers that he has been unable to identify. No spectroscopic, chromatographic, or similar tests have yet been performed due to lack of funds.

Randy Wymore is “100 percent convinced that Morgellons is a real disease pathology”, which seems a tad unscientific, based on the nature of the evidence.
#17 windy
July 26, 2006

I just got my own mysterious ailment. Turned out to be Pityriasis rosea. Probably very boring and run-of-the-mill compared to the more dramatic mystery ailments, but on the plus side, it’s harmless
#18 quitter
July 26, 2006

Physical manifestations of disease have a physical cause. Period.

Hmmm, that’s just not accurate. If it were, placebo effects wouldn’t always be so damn high. Suggestion wouldn’t be so effective, etc. You’re also probably not aware that around the world, many cultures have their own specific diseases of hysteria that are often endemic to specific places and the are trying to be understood now as sociogenic disease or mass psychogenic disease. Search these terms to find out more, the damn spam filter won’t let me put in links.

Further, the physical effects seen in Morgellons can be explained by obsessive compulsive behaviors described in these patients that are similar to those you see with delusional parasitosis. It’s from obsessive/compulsive behavior, they feel like their skin itches, like bugs are under their skin, they scratch at it and create a lesion. The fibers thing is a new trick, but when the fibers have been analyzed by real scientists they’ve been found to be from ordinary household sources.

Finally, everybody has to get some perspective here. Have you seen the websites of the Morgellons advocates? Have you seen their claims of medical conspiracy? If it is infectious, as they say, why don’t the doctors treating them get infected? Where is the agent? This is just hysteria, don’t buy into it.

Go to Wiki for some background on how this silly disease came to be. I’d bet if I were to make up a name for a disease, and ascribe some vague symptoms on the interweb I’d have this same group of people demanding I treat their quitteriasis like it’s a real disease.
#19 wheatdogg
July 26, 2006

The more fringe-element wackos say that space aliens have bought Morgellon’s disease here, or that the contrails of jets (they call them “chemtrails”) are seeding the US with the Morgellon’ agent, or both. (You know that the ETs and the govmint are in cahoots, don’t you?) Cruise the Coast to Coast AM website to catch a flavor of what I’m talking about.
#20 Tara C. Smith
July 27, 2006

Michael, thanks for the clarification. I’ll make the correction in the post.
#21 Janet Ginsburg
July 28, 2006

A couple of years ago I wrote a story for New Scientist about links between infectious disease and various mental illnesses. I looked at a variety of pathogens including Borrelia burgdorferi. In fact, I interviewed Willy Burgdorfer, the biologist from the Rocky Mountain Lab who first identified the spirochete in deer ticks. It was an accidental find — he was working on Rocky Mountain Spotted Fever. He told me that Lyme-like illnesses, complete with bull’s eye rashes, had been described in Europe for at least a century before the outbreak in Connecticut. Scientists had even figured out that it was probably a tick-borne disease caused by a spirochete. But according to the conventional wisdom of the time, spirochetes were found only in soft-shelled ticks, so no one even looked elsewhere. Deer ticks, of course, are hard-shelled ticks…
Tests for Lyme Disease may be similarly myopic. The test for Lyme Disease is an antibody test and it takes time to develop antibodies. Meanwhile, spirochetes can burrow into tissue or hide in cerebrospinal fluid, where they won’t trigger an antibody response. (This is from a lecture by Burgdorfer about spirochete life cycle: http://radio.cbc.ca/programs/ideas/shows/bacteria/willy.html)

One of the saddest studies I ever read was conducted by a team at Columbia University led by Brian Fallon. It compared kids for whom a Lyme Disease diagnosis had taken about a year (typical), with with a normal cohort. Every single one of the Lyme kids had been diagnosed with depression — a few to the point of suicide– and put on psychiatric drugs. Some of their symptoms were tamped down, but the kids weren’t getting better. When they were diagnosed with Lyme, they were put on antibiotics, which helped considerably. The kids still had problems, but then the borelia had had lots of time to do damage.

It doesn’t surprise me that both ticks and the spirochetes have gotten around. I did another story on schemes to use pets for disease surveillance. They’re doing some amazing work at Purdue with a couple of enormous databases, one from a chain of veterinary clinics with a “wellness practice” (good baseline data) that treats about 3 million pets a year, and the other from one of the major veterinary diagnostic labs. Oh my goodness what they’ve found… We are a nation on the move and our pets (and their pathogens and parasites) are moving right along with us.

And then there’s Borelia lonestari, the new kid on the block. A cousin to Lyme, it was identified only about 10 years ago when a patient with a rash and an attached lonestar tick walked into a doctor’s office. The tick and a sample from the rash were tested and a spirochete match was made. There is no diagnostic test for lonestari, so even though it may cause a similar suite a symptoms to Lyme Disease, it’s an impossible diagnosis to make. The lonestar tick is not only a more active biter than the deer tick, it has been expanding it range from the the southern tier of the country well into the north.

All of which is to say that what we don’t know about these diseases is so vast, it pays to be open minded.
#22 beth
August 3, 2006

wow…i have been doing internet research about lyme disease for many years…today i stumbled across this site.caution ….i have Lyme disease or so i am told.i wanted to add my two cents to this “crazy topic”. Please read up on some of this junk you seem to think is fueling the lyme disease and morgellons scare.
at the age of 13 i was diagnosed with rhuematic fever.theysaid it was from an untreated strep infection and that i was at the end of the course.they said my emotional outbursts,nerve pain,teeth pain,joint pain all was attributed to the rhuematic fever.that was in 1978in 1993 they told me fibromyalgia….2001 after a complete physical and mental breakdown a young new MD in our area told me she wanted me tested for tickborne disease.i came back positive ehrlichiosis,borrellia,babesia,bartonella.If my family would have taken my symptoms serious i could have been cured years ago,and how differnt my life would be.please don’t discard teenagers complaints of joint pain and fatigue or you could be missing a chance to stop the bacteria.after 5 weeks oral doxy and 2 weekd oral flaygl i went into seizures and was left with a parkinson type syndrom.it has taken 2 years to get halfway back to normal and i had to stop the treatments.i was told that the slightest of bacterial die off too much on me because i had such a load….anyway…call me crazy if you wish.i remind everyone that the doctars who invented the polio vaccine were also conciderd quacks by their peers…and look at how many lives that they saved with the vaccine?As for lyme not being in certin areas,maybe you are right but the borrellia bacteria of various strains are in almost every state.Missouri was #1 for the amounts of ehrlichiosis cases.
Missouri
#23 PaLady
August 7, 2006

I wouldn’t believe it either if it wasn’t for the fact that I have acquired this disease. I’m not sure how or where, I have many theories as does everyone trying to figure this out. About the things that come out of the skin. It’s true. It was one of the first symptoms I had and preceeded the non-healing lesions which I also have/had. I got the “you are doing this to yourself” bit from infectious disease doctor. We need help from people like yourself Tara. Hope you get involved with the research. I have no history of mental illness, but this disease, with it cyclical nature (just when you think you are getting well it comes back again)and not getting help from the medical community is enough to drive one nuts.
#24 debby
August 29, 2006

I have been afflicted with the symptons described as morgellons for five years now. Along with everyone else I have had to resort to try to find a diagnosis for myself.The closest I’ve come to finding the cause is Leishmaniasis caused by midges also known as no-see-ums. I found the information in a book TROPICAL MEDICINES AND PARASITOLOGY which your local library can order for you if it is not in stock. Unfortunatly even armed with the book {which has pitcures} the doctors were still unwilling to listen or even look at the book, all they had to say was, that Leshmaniasis was a Third World Desease and that was the end of the discussion. Please be aware that most cases of Morgellons was reported after Desert Storm, it is possible that it was brought back to the United States with the return of our troops. I think that the government needs to research Morgellons in the possibility that it is related to the Gulf War Syndrom
#25 jeff the dermatologist
September 5, 2006

For writer above. Not sure where you live but a mild form of Leishmaniasis is found in south/central texas on the San Antonio/Del Rio axis. A possibility for you if that applies.
As for morgellons and gulf war syndrome. The reason most cases of morgellons are reported after the first gulf war is that it was more or less invented (at least named) by Ms. Leitao just a few years ago. The spread of Morgellons is more related to availability of internet than troop movements I’m afraid.
#26 june tarkington
September 23, 2006

Finally, everybody has to get some perspective here. Have you seen the websites of the Morgellons advocates? Have you seen their claims of medical conspiracy? If it is infectious, as they say, why don’t the doctors treating them get infected? Where is the agent? This is just hysteria, don’t buy into it. Quitter
——————————————————–
Many of today’s highly respected Morgellons websites were
begun by physicians, nurses, and other health specialists because either they, their wives, or their children, were afflicted with the agonizing, disfiguring symptoms of Morgellons Disease both inside and outside their bodies. My family doctor has seen six people with Morgellons symptoms since January of this year. Such is the case of Mary M. Leitao, Executive Director of the Morgellons Research Foundation. Her son became sick with Morgellons at the age of two. You can read about her
and Drew here: http://www.morgellons.org/aboutus.html. And while you’re there, check out our Board Members. I’d never even heard the word Morgellons when in Jan. 2004, I developed painful lesions on my face and arms. I naturally sought out a highly regarded dermatologist. To me and my daughter’s surprise, he never once left his seat behind the desk to come look at me, never touched me, never suggested blood tests or skin scrapings. As he walked out of his office, he said, “I’m sorry, my dear, but I haven’t a clue what kind of rash you have. Try some RID, okay?” My daughter said he then turned to his nurse and in a softer voice, muttered “Delusional parasitosis.” I received the identical treatment and response from dermatologist #2. Just a week or so later, after we’d scoured the Internet, my daughter found what we were looking for. Delusional Parasitosis and Morgellons Disease are one and the same. So, disbelievers and cynics, please try a little tolerence and empathy for those of us whose lives were changed almost overnight by a so-called parasite called Morgellons. The CDC is now onboard, and research has begun at OSU in Tulsa, OK, and other research facilities. I pray they go on to find a cure in my lifetime, but I’m told that’s unlikely. The disease has been both ignored and hidden away for so many years even the most basic identification and history has been lost. Thanks for listening. God bless.
#27 Julie Ostoich
October 17, 2006

Morgellon’s or whatever is it’s true identity, is anything but delusional. I can tell you first hand that it is sheer torment.

Here is a description of my recent experience with this painful and maddening condition:

On Aug.13, 2006, I began to experience painful stinging, itching and burning sensations on my left shoulder. The next morning, I found small round sores with scabs. Each night thereafter, the sores and area around them would ignite. The cycle repeated itself. I began to develop the same breakout of symptoms and sores on other places on the same arm. Over the course of a month, I applied an assortment of topical products both natural and pharmaceutical (creams, salves, essential oils, enzyme products, etc.), but nothing helped. The only thing that relieved the itching temporarily was peppermint oil. I had several large scabby areas – one near my elbow was 1.5 inches long by 1/2 inch wide. I wore long sleeved shirts to hide them. The sores weren’t healing. The routine of nightly itching and skin crawling sensations was maddening. Online research led me to think it might be scabies, but my doctor took a skin scraping and didn’t see anything. He was clueless. I continued to look for answers on the web and realized that my symptoms fit what is termed “Morgellon’s” or fiber disease. I was obsessed because of the suffering it was causing me and began to examine the sores more closely. I concluded I was inflicted with Morgellons.
I joined online groups dedicated to finding out more about this infliction. Recently, I learned about a colloidal silver product called NutraSilver and decided to try it. I ingested 20 drops of NutraSilver in a glass of water 3 times a day. Within a week, most of the sores were healing and the skin sensations became less intense. There was significant improvement overall in 2 weeks. This was very promising.
Additionally, I have hepatitis C (HCV). Joint inflammation is common among us ‘heppers’ and as such, I suffer with severe joint pain, but it is not arthritis. I take an extensive protocol of supplements daily for addressing HCV and it’s many extra-hepatic manifestations. Despite this, the joint pain has been progressively worsening to the point of being in constant pain and not being able to function normally. The past 2 years, I’ve been experiencing intense pain in my hips, low back, knees and shoulders. Sitting was painful and I would eat standing up. I had difficulty sleeping because I tossed from side to side due to hip discomfort. I had pain in all my joints – fingers, hands, wrists, ankles and my neck where I have 2 herniated discs. I now believe that this joint inflammation may be related to the Morgellons or perhaps even Lyme’s disease (I have read that 94% of people with Morgellons test positive for Lyme). I’ve never been tested for Lyme’s disease, but I think it’s a distinct possibility that I am co-infected with it as well.
Within the first week of taking NutraSilver, I noticed that I had considerably less joint pain. By the 2nd week, I could hardly believe the improvement. I hadn’t been able to put weight on my right knee when rising since March. Suddenly, it no longer hurt and I could get right up on it. My hip and low back pain vanished completely. Then I ran out of NutraSilver. I continued to have sustained joint relief for about 5 days. Then my joints became painful again and have been getting worse each day. The nightly itching has also returned. I strongly believe that NutraSilver has been addressing more than I anticipated. I am anxious to obtain more NutraSilver and continue treatment. NutraSilver has had a profound impact on improving my joint pain and in reducing the Morgellon symptoms and spread.
Another facet of improvement that I didn’t anticipate was an increase in energy. Due to HCV, I have significant chronic fatigue. During the 2nd week of NutraSilver treatment, I began to experience increased energy and feelings of wellness – something I haven’t felt in a very long time. My quality of life improved and I started to have more energy and felt less fatigued.
Additionally, I have put NutraSilver directly into my nose to clear a nasal lesion that has been plaguing me for months. NutraSilver also helped me to fight off a recent attack of illness that my family and co-workers succumbed to.
My journal is posted for any who would like to read it here:
http://www.nutrasilver.com/NutraSilverJournals.asp
more info. about NutraSilver at:
http://www.nutrasilver.com/

There is also a message board forum if you would like to participate:
http://www.morgellonsboard.org/forum/toast.asp
#28 fred
November 10, 2006

I do understand why the medical community thinks that this is crazy. I too thought I was crazy after a scabies infestation that turned “chronic” and I started having crawling, biting etc.

In fact I went for a couple of years entertaining the fact that I was delusional as the doctors were telling me or that I suffered form a neurological or psychological disorder. it wasnt untill I found many other people with the exact or similar symptoms on the internet that I started to believe there is this “epidemic” of Morgellons out there. In my case it was the egg before the chicken, the internet didnt lead me to invent this illness, the symptoms were present long before I heard of Morgellons.

Also, the majority of people with morgellons, date the onset to 4-5 years ago, about the same time as 9-11, gulf war, who knows? Yes, theories abound, sometimes quite wacky, but in the abence of any real information and research what can you expect?

I am still quite willing to accept the fact that I may be delusional or “crazy”. But what does that diagnosis accomplish? Will I recieve some kind of benefits? If so, sign me up!
#29 Russell
November 23, 2006

I saw a message board the other day that talks about Morgellons. The people posting there say they have found something that really help them. You can check it out at http://www.morgellonsboard.org if you are interested
#30 dan
November 28, 2006

the cause of this disorder is a stray (nondisclosed) target of a proteomics research center which has been released. this target was created for research and experimentation on artificial skin, wound dressings as well various cancer research projects. it is an international military issue of fairly high caliber, hence all of the confusing and conflicting information available. infection by this agent is acute, persistent and latent. debate over the reality of its existence is only wasteful energy as already a significant percentage of the population has been exposed with only a small fraction of those showing symptoms. what is being seen currently is the beginnings of a what will eventually be seen as pandemic. the first isolation and observations of this GMO has been done. http://www.crossinglines.net for images and HD video compiled in the staff lab of an accredited hospital and associated university. existing military agreements prohibit direct disclosure from said institutes. make sure to also read the email discussions with the cdc as well as those from Vaneeden, the scientist who has this agent isolated.
#31 Prichard
November 28, 2006

If you are interested in Morgellons Disease or experience Morgellons symptoms, I would like to invite you to participate in the Morgellons Disease Information Community and Message Board at morgellonsite.com
#32 Smileykins
December 3, 2006

Riddle me this.

A lot of patients followed the typical pattern of a diagnosis of DOP. I think the following excerpt, from an article I’ve linked below, is a prime example:

People with delusions of parasitosis read of the discovery and wasted no time contacting the researchers by phone, mail, or email. All of the calls and correspondence — 20 or 30 each time the study was published — were the same: cries for help. The writers claimed to have long been acquainted with the parasite the researchers had discovered. In fact, their bodies were teeming with it.

“Often they were hysterical. Some people thought they were about to die,” says Relman, an assistant professor of medicine (infectious diseases) and of microbiology and immunology at Stanford. “Others even told me they would donate an organ to science if we could find out what parasite was attacking them.”

Such desperation is not unusual. Often accompanied by depression and low self-esteem, the condition can be psychologically devastating.

“Their lives can begin to revolve around their beliefs,” says Gould, co-director of Stanford’s Dermatology Psychiatry Liaison Clinic.

Some patients can no longer function at work or at home. They may cut ties with friends and family because they suspect everyone thinks they are crazy. They end up isolated, stranded in their delusion.

http://healthresources.caremark.com/topic/parasitosis

So, with “morgellons disease”, we have a set of patients who’ve refused treatment for DOP and latched onto a made up disease that a mother with self-reported suspected Munchausen By Proxy Syndrome posted on the web. She wanted to get it recognized, and these patients followed her instructions to put pressure on the authorities.

The majority of them seem to fear the government, but they didn’t have the capacity to think this through before making the government get involved.

Do they actually want government mandated control, when all they had to do was comply with their doctors?
#33 Barb
December 6, 2006

Hi I am a older lady who suffers from , shall we say in 1995 , the cdc has my skin samples , from the state of mn. these samples they sent back quinine -mix ? did not cure , what they call a unknowen fluke , ? fluke , strange word , my symtoms have gotten worse .
I now see a specilist from the mayo clinic , have had infection cut out of my nose , two month ago and have rashes and crawling bugs , that I also studie , in a morbid way , it is frekey fasinating , now I was depressed of course , i haven’t felt good , I have family I visited in Dallas , Austin and my Brother just moved to Austin from Cal., I was down there 6 yrs. ago , my Mother came up here 8 yrs ago , maybe even through the mail ?,
Am I makeing this up /, also email me give me your # hear my voice as I tell u how i really got this , also a x Gov., woker , you better belive this is true , i wish it wasn’t .
I don’t blame anyone who thinks this isn’t true it is all so far feched , but is it really . If a bactirea can be in your blood like infection , then if it is a bigger something and is hard to see , I really don’t hope you get this to prove my point , but i have proof .
By the way I run my own bussiness from my home , so dose my Husband , who is also sick , on days we can we support ourselves, so even being sick or overheated of cold we push , to work , this is no joke , i was sick long before I heard of anyone else , luck to anyone who has this , don’t get too mad if people are unknoweglebel , like some of my spelling , i have some work to do , yup email me i’ll call you asap , and also discuss some care I have or haven’t got , thank you for your time all my best .
#34 Barb
December 6, 2006

Hi I am a older lady who suffers from , shall we say in 1995 , the cdc has my skin samples , from the state of mn. these samples they sent back quinine -mix ? did not cure , what they call a unknowen fluke , ? fluke , strange word , my symtoms have gotten worse .
I now see a specilist from the mayo clinic , have had infection cut out of my nose , two month ago and have rashes and crawling bugs , that I also studie , in a morbid way , it is frekey fasinating , now I was depressed of course , i haven’t felt good , I have family I visited in Dallas , Austin and my Brother just moved to Austin from Cal., I was down there 6 yrs. ago , my Mother came up here 8 yrs ago , maybe even through the mail ?,
Am I makeing this up /, also email me give me your # hear my voice as I tell u how i really got this , also a x Gov., woker , you better belive this is true , i wish it wasn’t .
I don’t blame anyone who thinks this isn’t true it is all so far feched , but is it really . If a bactirea can be in your blood like infection , then if it is a bigger something and is hard to see , I really don’t hope you get this to prove my point , but i have proof .
By the way I run my own bussiness from my home , so dose my Husband , who is also sick , on days we can we support ourselves, so even being sick or overheated of cold we push , to work , this is no joke , i was sick long before I heard of anyone else , luck to anyone who has this , don’t get too mad if people are unknoweglebel , like some of my spelling , i have some work to do , yup email me i’ll call you asap , and also discuss some care I have or haven’t got , thank you for your time all my best .
#35 donna
December 10, 2006

Hi,
I really enjoyed the article and the feedback…I tend to agree with your future predictions….
I have this disease, problem, whatever you want to call it. I asked my dermatologist to give me medication for paracitosis and refer me for mental help…he did not refer me to a psych specialist…he sent me to several other doctors to try and get a diagnosis but made it clear he did not believe me….We as americans place great faith in our doctors, science, and the resolvement of disease.
Maybe we expect too much….I don’t expect that anymore…I think there are many diseases that go untreated and uncared about. I think that some illnesses come about to teach us about ourselves. Doctors would not ignore a disease because they just don’t know about it right?
It is malpractice to diagnose a problem and make no efforts to treat it, to ignore a problem and not follow through with chronic care management.
My greatest concerns were these …that I would not pass on a contagion to an immunologically compromised patient that I was nursing. One day I hope to have grandchildren and I would just be in fear for my family and potential of them getting this problem. I believe that this disease is opportunistic…I gave up on physicians curing me a long time ago…I don’t even discuss this with people anymore it is a waste of my breath to convince someone of something that they have no knowledge of. I am striving to build up my immune system through proper diet, exercise and stress management….I have had some success in management in this arena using these methods…I still have out breaks..but I do not panic or become overly stressed about this. I spend alot of time in prayer and meditation.
It causes me emotional pain to read some of the responses of the bloggers. Ignorance is bliss. I am not blissful nor ignorant and I do not appreciate being catagorized as “crazy”.
It is interesting to me that in 1985 Aids was just being investigated thoroughly…it is opportunistic, had a population primarily whose lifestyle at that time were considered a little different…and until a prominent person died of this not much was done to forward funding for treatment….much predjudice has been overcome with this disease…it is a shame that it took many deaths for people to show a little compassion…But let me leave this thought with you….
The golden rule is very true in life…what you say and do has eternal implications…if you are unkind and unfeeling it will return to you somehow.
I don’t have to create a bandwagon for people to jump on….if they get the disease they will already be on it….so let the band play on…till someone diagnoses the tune.
#36 M. Randolph Kruger
December 10, 2006

Well Tara, I have seen it and it looks a lot like necrosis caused by spider bites to me. Look a the area where these things are happening… Texas, Florida, California. The ugly caused by the bite makes a cyst and in some cases a long ropy filament comes out of of it. We used to get them in the jungles in Honduras. Especially the B. Recluses. Burning, stinging etc.

Morgellons? Plant DNA? Easy to biopsy and take a chunk of meat with it and test it.
#37 southcity
March 18, 2007

Below are the words from Dr Vitaly Citovsky, Ph.D.

“I would like to clarify the involvement of my research group in the Morgellons studies. We are biochemists and cell and molecular biologists who study fundamental and diverse biological processes, such as genetic transformation, intercellular transport, and chromatin remodeling, using plants as experimental systems. Because one of our model organisms, Agrobacterium, is capable of genetically transforming not only plants, but also other eukaryotic species, including human cells, we were contacted by Dr. Stricker and MRF to investigate potential presence of Agrobacterium in biopsies from Morgellons patients. A limited number of anonymous samples provided by Dr. Stricker were tested by PCR for the presence of different families of Agrobacterium genes. Control reactions included samples from healthy donors provided by us. Only Morgellons, but not healthy subjects tested positive in these studies. This observation does not imply that Agrobacterium causes Morgellons or that Morgellons is indeed an infectious disease. However, it does encourage future studies to determine (i) statistical significance of our data, (ii) whether or not Agrobacterium is not only present extracellularly, but also causes genetic transformation of the infected tissues, and (iii) whether or not infection of laboratory animals with Agrobacterium can recreate at least some symptoms of Morgellons. These are the immediate goals which may or may not be pursued, depending on the available research funding which is currently non-existent for Morgellons.”

Vitaly Citovsky, Ph.D.
Professor of Biochemistry and Cell Biology
#38 Ursula
March 28, 2007

Hi,
It seems possible that this could be a new disease. I believe the Nature journal is launching an online version, relating to nanotechnology and nanobiology, with an article on this very complaint.
Some people who think they are suffering from this complaint may be delusional, (let us call this section of people group 1), but perhaps not all of them are.
Let us call this group, i.e. those who may really have this new disease, (if such exists), group 2.
Psychiatric help is available for those in the first group who are reliably diagnosed as being delusional, (as opposed to being overly imaginative, e.g).
What about those in the second group, who could be suffering from a hitherto unknown clinical syndrome? They too need urgent medical help, and a false diagnosis of delusional parasitosis would perhaps be inappropriate, even though the principal drug (Orap, or pimozide) used has in fact anthelmintic (in addition to antipsychotic) properties.
How might a health care professional classify a self-diagnosed patient into either group 1 or group 2?
While the aetiology of this possibly new clinical syndrome might remain obscure for a very long time, the professional must rely on ascertaining whether certain objective clinical signs are present or not.
PCR testing of samples from patients, such as that mentioned in the post above with respect to determining the presence of different families of argobacterium genes is a step in the right direction, although further research, as the author said, is needed into this.
Maybe a great deal more of PCR testing should be done, and this should not be restricted, perhaps, solely to argobacterium genes, (though this is a very important finding, as is the older discovery of the plant DNA).
Has anyone researched blood testing, with regard to antigens and antibody formation? (Perhaps with respect to, but not restricted only to, the possible helminth component).
Has anyone researched whether a patient’s extremely itchy scalp or skin tests positive for the presence of insects, pupae and their eggs? (Many people feel that insects are breeding on them, and pictures/videos of such purported organisms are on the web).
What is the ‘callus’ made of, if it is more than simply ‘normal’ hardened skin? What precisely is the small white worm/fiber that is alive even after being removed from the sufferer? (Cliff Mickelson).
How on earth could a person get what appears to be an infection that is possibly compounded with fungus, (see apical growth), plant genes, arthropods and helminths? What about the other strange unidentifiable fibers? Is it right that some have been recently analyzed? What do they consist of?
How exactly does this purported condition differ from neurocutaneous syndrome, (see Dr Amin)? This is also new, and the clinical features are identical, as far as I can see.
Are there any doctors in the USA who are assessing patients in the manner described above? There may be additional tests, (see patent storm, e.g.). Are these doctors not treating those who have been so assessed and diagnosed?
#39 Smileykins
April 2, 2007

Beyond a shadow of any doubt there are morgie believers/patients who wouldn’t, otherwise, be diagnosed as having DOP prior to their discovery of “morgellons disease”, and taking literature on it into a doctor. All sorts of ill people have signed up to this false belief.

It is easy to see that fact, if one has the time to do it, and that the DOP patient movement originally began in 1994, evolving into what Mary Leitao devised, and launched, on line, in 2002, with her “morgellons disease”. It was pathologically clever of her to unite so many patients with fibers as the main theme of her disease, considering the prevalence of them collected as the hallmark matchbox sign of DOP.

Her disease’s signs and symptoms have continuously evolved, as well as her case definition, to suit her needs, to further deceive those who are ill and not treating it, and to suit the needs of the other perpetrators behind the myth. Rather than conform to treatment and recover, the patients appear to prefer that the world go mad with them, and, to me, it rather looks as though many are!

Since the inception of it, not only have DOP patients been further deceived into the belief that DOP has never been adequately studied, the perpetrators of the myth poison the patients’ minds into thinking — that while their DOP diagnosis may have been accurate — they have them believing that DOP is caused by an actual parasitic agent that has just never been discovered. They know they’re playing into their delusions.

There are patients, such as “cutters” who belong to the group blaming their illness on “morgellons disease”, as well as alcoholics and drug users, and those with facititious disorders. Morgies aren’t, or they weren’t, necessarily, all DOP patients before they signed up to this false belief. All one has to do, is look around, and pay attention.
#40 Ursula
April 3, 2007

Hello,
I hear what you are saying, Smileykins, in that there is such a condition as delusional parasitosis, and there are indeed many factitious disorders within the world of psychiatry.
However, certain facts about Morgellons or Fiber disease might make those within the psychiatric community wonder if this could possibly be a new medical condition.
Delusional parasitosis is (or was) quite a rare psychosis, and it is properly arrived at only as a diagnosis of exclusion.
The proffering of a matchbox containing samples is (nowadays) less likely to be seen, in that contemporary patients are altogether much more sophisticated, and their choice of samples and evidence would reflect this.
Such evidence could include the results of research carried out by bona fide scientists and doctors, e.g. into the composition of at least some of the fibers.
This was carried out by disinterested and reputable laboratories, so I fail to see why they would state that the fibers (the origin of which was not disclosed to them)analysed are manmade.
The fact that these fibers were taken from a patient’s skin, by a doctor, begs many questions in relation to nanobiotechnology having possibly gone awry, surely?
This is obviously yet another objective clinical test that could, in addition to those suggested in my previous post, be researched further.
Is nanobiotechnology research being carried out? Is this ever done in conjunction with cloned microorganisms? What about research into cloned antigens and antibodies?
It may well be that there is no such condition as Morgellons Fiber disease. However, this, as a hypothesis, must surely be submitted to systematic scientific efforts to disprove it, (if possible).
This is what is being done, for instance in the research just mentioned, (see Rense Coast to Coast), and in that outlined in my previous post re the PCR and the finding of the agrobacterium gene. Ergo, the hypothesis is weakening.
We have to look at the scientific evidence before possibly consigning huge swathes of people to what perhaps would be an inaccurate diagnosis. This is important, because it is crucial that people receive the correct treatment for whatever is wrong with them. Surely this is elementary good medicine?
I think that most healthcare professionals would agree with this approach, given the importance placed on evidence based medicine.
Even if they, for whatever unaccountable reason, might not wish to act in accordance with the scientific evidence, do you think that today’s highly articulate and informed patient would allow that?
It seems to me that they have been very effective so far, in getting the preliminary research started, and in lobbying pretty powerful people so that the CDC would launch an investigation.
I think that this has all been very difficult, and I do not see any sign of their collective will weakening. I think that they are going to push for more scientific research and related media coverage.
I am not saying that every person who thinks that they have this putative disease is correct.
What I am saying is that they surely deserve a competent medical assessment, in which adequate use is made of the scientific clinical tests that will become increasingly available. This is surely the most basic of rights within medical jurisprudence?
If Dr Spencer (Rense) is right, and self-replicating nano machines are increasingly part of the picture, what might be the ensuing consequences for others if folk do not go for diagnosis and treatment?
It seems to me, (forgive me), that you would be far better putting your considerable energy and writing talent into helping them achieve proper clinical assessments.
You do not have to agree with them, you just want to see the scientific evidence, one way or the other.
That way they might eventually receive the treatment they need, and, even if you are right, and this for many should be Orap, you will still have helped, as delusional parasitosis should not be left untreated either. Neither should those who possibly have this be remonstrated with via the internet, and neither can they be deprived of their rights enshrined within the medicolegal principle as alluded to previously, viz. it is a diagnosis of exclusion.
#41 Smileykins
April 4, 2007

I’ll try being as brief, and to the point, as possible. I know that no one can be talked out of a state of delusions. It’s fine if nobody is injured, or injuring anyone else, but that isn’t the case.
*Thirteen years ago, The Ladies Home Journal published an article on lindane misuse and subsequent poisonings, and the National Pediculosis Association was flooded with reports of poisonings from DOP patients.
*The CDC was repeatedly contacted by the NPA’s president, according to her on line accounts, and they were aware of the patients’ situation.
*For reasons unknown, the NPA president “claimed” to have researched DOP and noticed that no skin scraping studies had ever been done in a clinical setting. As bizarre as her saying that, alone, is to believe, she arranged a skin scraping study through the OK State Dept of Health, in 2000. That so-called study was instrumental in further feeding into the patients’ belief that collembola causes DOP.
*Dr. Omar Amin, a parasitologist, was also contacted by DOP patients around the same time as the NPA had been, and he came up with his theories on toxins from dental sealants and amalgams, and called it Neurocutaneous Syndrome. He said he’d found some collembola in the patients, too.(Some morgies aren’t at all happy with his way of trying to cure their illness, leaving them with no teeth.)
*And then along comes Mary Leitao, who dug up a piece of 17th century history discussing comedomes, due to being tormented over her toddler’s eczematous skin having fibers in it, which appeared to her as though they were “sprouting” from his skin.
*In 2002, she, and Doug Buckner, a victim of her newfound, ancient, disease (whom she had befriended), put up a web site in honor(?) of her son, calling it the Morgellons Disease Foundation.
*It was guaranteed, with the launching of their site, tying together what all DOP patients have always had in common –”fibers” from lint, the most prevalent component of the matchbox sign — that there would be a big following.
*Her insistence that those dastardly fibers were the source of a yet to be discovered disease was what led to one of her son’s doctors being advised — from a John’s Hopkins Infectious Disease Specialist that he’d referred them to — that she needed to be evaluated for Munchausen Syndrome by Proxy.
*Shortly after the MRF site was launched, Nurse Ginger Savely promptly contacted Mary Leitao because she’d had patients presenting with her strange, new, “morgellons disease”.
*She, along with Dr.R.Stricker, who treat an abundance of patients they say have “chronic” lyme disease, (and, “morgellons” just like Dr. W. Harvey said), co-authored a Pub Med article with Mary Leitao.

I’m sorry, I tried being brief, but, of course, there is much more. Morgies like to say, “connect the dots”. Maybe they would, if they could, but they’re delusional and refuse to treat it. Therefore, they can’t take care of any of their other serious health matters, either. Ninety-five percent of the registered members of the MRF have seen an average of ten to forty doctors and been diagnosed with DOP. Many tell exactly what underlying conditions they have that has triggered the state they’re in. Quacks are having a field day, rolling in the money they’re making off of this.
#42 Ursula
April 4, 2007

Hi Smileykins,

I think that you are correct, in that it is almost impossible to be brief if one is to try and do justice to such a complicated, and currently evolving, matter such as this.

I do realise that doctors (and nurse practitioners)earn a reasonable salary, but I do not think that they can reasonably be blamed if patients choose to have a consultation.

If the internet community is functioning in a way that is delusionogenic that is, in itself, extremely interesting, and worthy of further study. The sheer numbers (and these would appear to be increasing) involved, in what was hitherto quite a rare psychosis, (if that is what a sizeable amount of them turn out to have), are frankly staggering.

However, the necessary diagnostic criteria would require to be fulfilled, as some patients could be suffering from a different physical condition, and some could simply be imaginative.

However, some of these individuals could actually be correct, in that they are suffering from what might possibly be a new clinical condition.

This is either true or it is false, and the answer to this is to be found in the scientific evidence, not in what may be a given condition’s possibly chequered diagnostic history, (which is incidentally nothing new).

From my understanding, Dr Amin does not leave his patients ‘dentally naked’, given that American cosmetic dentistry is the best in the world. His latest research points to silicone being involved. He is a renowned expert, and in fact has advised the CDC on parasitology, so I would not dismiss his findings.

Neither would I discount the statements made by Clongen laboratories regarding the surprising nature of the skin samples submitted to this ‘not for profit’ facility. They have produced photographs on their web site.

Do you agree that the individual patients concerned have the inalienable right to have a competent scientific assessment performed?

In the light of the scientific evidence uncovered so far, (which I have alluded to in my previous posts), would you not say that something has happened to the individual patients from whom the biological samples were taken?

If a person who turns out to have atypical scabies cannot then properly be diagnosed as ‘delusional’, surely this logic must apply to those individuals mentioned in the previous paragraph, and to those fortunate enough to have been diagnosed and treated by Dr Amin and his colleagues?

Would you not agree that no-one can say whether a given person is delusional or not until they have been subject to the range of new clinical testing that is only now being developed (principally by scientists) for this possibly de novo clinical condition?

I am not saying that there is definitely such an entity as Morgellons Fiber disease, or that, even if there is, each person who thinks they have this actually does.

The only way that truth will emerge is via the scientific evidence.
#43 Smileykins
April 4, 2007

I dismiss and discount everything that is based outside of reality.

“I know that no one can be talked out of a state of delusions. It’s fine if nobody is injured, or injuring anyone else, but that isn’t the case.”
#44 Ursula
April 5, 2007

Hi Smileykins,

Yes, but what science must establish is whether or not this putative medical condition is based within the realms of physical reality.

If this is found to be the case, it really matters, not least because Dr Schwartz hypothesises possibly more than one stage to this condition in some people.

One thing I cannot understand is why those who think they may have this condition, (although they may have something else physically wrong, with similar symptoms, that is yet to be diagnosed by their doctor), are not more interested in the solution developed, (I believe by a doctor and scientist), which will demonstrate the presence of chitin on the skin and clothes, (please see my earlier post).

Even if a sufferer believes the arthropods, or insect parts, (NB both phenomena have been found by Dr Amin), possibly to be bioenginered, or maybe that they can eventually emerge from cloned microorganisms, chitin, (and the chemical changes necessary in the hormonal progressive production of this)will still be present, (in the ova, or the small ‘perfect black flies’, e.g.).

Dr Amin hypothesises that the (normal)insects may be attracted by the smell of the (usually) preceding fungal infection, and may be able to breed on the scalp (e.g.) of a person whose immune system is below par. He also found ‘unidentifiable’ fibers on such a scalp many years ago.

Would it be sensible to make further enquiries to see if any doctor would be able to utilize this solution in a controlled examination of a patient? It seems to me that, if a doctor or scientist has been good enough to develop such a substance, they might also be happy to see it used by a fellow professional.

Then we have the PCR finding of the agrobacterium genes on the anonymous fibers, (but which came solely from the Morgellons sufferers), and the possibility, (as I understand it), that the assuredly necessary further research by the scientists concerned may be subject to uncertain funding. Pardon?

The anonymous nature of the fibers, (and of other morgellons laboratory samples), is understandable given the history and difficulty in all of this, but where does this leave individuals who require their individual samples to be analysed, purely so they can receive treatment sooner rather than later?

These are some of the points that individual citizens should perhaps be politely raising, given that they know precisely who to write to, going by their accomplishment in getting a CDC investigation started in the very first place.

It could be that insects are behaving in strange new ways as a result of global warming, and that this new disease (if such it is) has nothing whatsoever to do with cloning or nanobiotechnology. Folk still need treated, though, if they are ’21st century assessed’ as having it.

Would it surprise you Smileykins, if a scientist quite freely demonstrated his underground collection of transgenic plants (bird flu virus) to a radio researcher, and that this was put out live over the airwaves? His intentions are good, (I think he hopes to make vaccines), but can you see any possible dangers in such activities?

This is all based in reality, and I too think society needs to stick to that, when contemplating the possibility of this, or any other, manifestations of a clinical nature.
#45 Smileykins
April 12, 2007

“I know that no one can be talked out of a state of delusions. It’s fine if nobody is injured, or injuring anyone else, but that isn’t the case.” Is this population of patients a minority? Yes. Is it reasonable to think mental health reform can step backwards in time because of their demands that the government step in to help them? No. Can the charlatans who are using them for profit be prosecuted? They sure can. All a morgie family member has to do is pursue it. Is the CDC going to be able to help them? I sure hope so, because too much harm is being done on too many levels.
#46 Smileykins
April 12, 2007

Being realistic, though, I think all will, sadly, just go on as usual with people like this.
#47 Ursula
April 12, 2007

Hi Smileykins,

I agree that it is manifestly futile to try and talk the truly deluded out of what we might term their ‘pathological convictions’.

One slight irony is that what you rightly describe as a ‘population of patients’ could negate the legal potency of the delusional label being subsequently applied to any individual within this clearly delineated sub group or culture.

By ‘subsequently’ I of course mean only after an individual has been thoroughly assessed by a clinician who utilizes 21st century scientific tests.

The further development of these, (and I think there will be a race on now), will mean advancement in medicine, including psychiatry, the latter being a sub set of the former.

I do have an interest in the incorporation of innovations in technology into delusional thinking, e.g. the possible ascribing of sinister motives to these as part of a person’s illness.

However, although some seem to think that the sheer act of joining certain internet groups can possibly effect such an unprecedented rise in what was hitherto quite a rare psychosis, I am now not so sure.

In any case, the proper medical management of any individual within the aforementioned groups should not be based upon what I, or any other person,’thinks’.

It must be predicated upon what can be proven.
#48 Smilkeykins
April 13, 2007

“I know that no one can be talked out of a state of delusions. It’s fine if nobody is injured, or injuring anyone else, but that isn’t the case.”

There are blood-spurting videos that some of these patients want everyone to see, of self-injuries bring performed, as well as horrifically scarred up patients, one, with a theme song playing in the background of her video, “I Did A Bad, Bad, Thing”.

Some morgies speak of neglecting their pets to the point of death, and there are small children under their care, too, who are not only being psychologically harmed, but they’re also not getting medical attention when they need it. Their ill mommies say that they are afraid that the authorities will take them from their custody if they were to take them to a doctor.

Their proof is pretty prevalent all over the place, and I don’t quite think they have the concept of the internet, entirely. Protection is something desperately needed for all concerned.
#49 Ursula
April 13, 2007

Hi Smileykins,

If people are afraid to take their children to the doctor in case they are not believed, this is very bad. Once again, the answer is to ensure that an adequate assessment is undertaken, utilizing the aforementioned 21st century scientific techniques.

Neurocutaneous syndrome (NCS) also emerged as a new clinical condition in the past few years, and its clinical features are identical to Morgellons/Fiber disease.

The fact that many of Dr Amin’s patients were actually previously misdiagnosed and admitted to psychiatric hospitals, (from where he transferred them to the care of his team), only goes to show the necessity of adequate, professional and individual assessment.

Sometimes the patient really does have lesions, unidentifiable fibers, (although being identified now, see supra), cognitive dysfunction, ‘brain fog’, in conjunction with infection/infestation of various parasites and helminths.

If this is so, the patient is not going to get better unless and until the proper treatment is administered, and the requisite drugs professionally prescribed. (The human immune system is not designed to deal effectively with severe worm infections, so Dr Amin states that specific treatment is necessary).

The aetiology of NCS and of Morgellons Fiber disease/syndrome may remain obscure, but that does not mean that the patients should not be treated, or that they should be inappropriately placed within a psychiatric facility when they in fact actually have a physical disease.

One of Dr Amin’s patients was found to have a nematode pressing on her bladder, so you can imagine the suffering the poor woman endured prior to being reassessed, and the professionals realising that something new was happening here, and that this was most assuredly very clearly distinguishable from delusional parasitosis.

I am sure that I have read some accounts of patients with Morgellons Fiber disease/syndrome complaining of what sounds like serious bladder insufficiency.

It is just not good enough that such patients are not only perhaps being denied appropriate medical help, but that they are sometimes also slotted en masse into a category, via remote internet ‘pronouncements’, is surely below any standard that any reasonable person would accept.

To be misdiagnosed as delusional when this new syndrome (NCS, Morgellons, Fiber disease), was unheard of is no reflection on the standard of psychiatric care and treatment at that time.

Dr Amin has published a wealth of professional literature since then, and when this is taken into consideration along with the findings of Dr Wymore, Dr Schwartz, Dr Spencer, and Dr Staninger, (to name but a few of the scientists and MD’s who are researching this), things become different, (and this will be increasingly true as more work is put in the public and professional domain), from a legal perspective.

I am not saying that every person who thinks that they may have this new ‘syndrome’ does have it, as they may have something quite other.

Their assured right in law is to have a competent and timely assessment and diagnosis.

If this assured right is delayed unreasonably, and their condition deteriorates as a direct consequence, might the ‘but for’ clause therefore be applicable in the tort of negligence?

What about the right to be ‘fiber screened’, by PCR analysis for the possible presence of the agrobacterium gene, (inter alia, see other research)?

Which antibiotic might normally be prescribed in such cases, and does this have direct relevance to other research on the subject?

All sorts of legal rights may arguably begin to flow once such expert research evidence is increasingly presented by scientists and doctors.

I am sure that a timely resolution of this is in everyone’s interests, especially as the purported number of sufferers would appear to be increasing.
#50 Smileykins
April 13, 2007

Hi, Ursula:

Could you please provide a link to the source of this statement, please? Thank you.

The fact that many of Dr Amin’s patients were actually previously misdiagnosed and admitted to psychiatric hospitals, (from where he transferred them to the care of his team), only goes to show the necessity of adequate, professional and individual assessment.
#51 Smileykins
April 14, 2007

I will not argue with anyone entertaining delusional thinking. I, (as well as others who don’t necessarily enjoy participating in futile arguments for sport, either), do not appreciate it when my words are taken, and twisted, Ursula, as a means of promoting YOUR, or anyone else’s beliefs, as though we share any resemblance in thought. I generally ignore it, because:

“I know that no one can be talked out of a state of delusions. It’s fine if nobody is injured, or injuring anyone else, but that isn’t the case.”

I always respect others opinions. I have an exception to that rule on the matter of “morgellons disease”. You have my permission to continue addressing me. You have my permission to continue twisting what I say. However, when it comes to the issue of child abuse and neglect, a punishable crime, (as well as animal abuse and neglect), I did not say anything about these mentally ill mothers, being afraid to take their physically ill children for medical attention due to any fear that they would “not be believed”.
#52 Smileykins
April 14, 2007

Dropping back in, yes, Ursula, you are precisely correct with this prior remark:

However, certain facts about Morgellons or Fiber disease might make those within the psychiatric community wonder if this could possibly be a new medical condition.

It is precise, in that patients have refused legitimate diagnoses, repeatedly, by virtue of the state of mental health they’re in — a delusional state — induced from their underlying, and serious, health conditions. Like it, or not, they are members of the psychiatric community, and they are seriously outside of the bounds of reality. Their refusal to treat what they have, has led them to their movement to bring their illness to light, influencing others who are just as ill to follow it, as well as heavily influencing persons who are taking it all on a superficial level, ignorant, gullible, vulnerable, whatever the case may be, of the facts in existence. That is why you seem to believe that “this disease” is increasing. The doctors you think are worthy of being called “doctors” are benefiting from preying on the most helpless members of society.

Yes, the madness will continue increasing. Enjoy your explorations into your false beliefs.
#53 Smileykins
April 15, 2007

Ursula?

The fact that many of Dr Amin’s patients were actually previously misdiagnosed and admitted to psychiatric hospitals, (from where he transferred them to the care of his team), only goes to show the necessity of adequate, professional and individual assessment.

Please? A link to the source, or did something accidentally slip out?
#54 George Fuhrmann
May 6, 2007

I just read the article now on 5/6/2007. Not realizing first when it was written, I thought it was a disgrace that someone could put out information that was bad already a year ago, but it is certainly preposterous in 2007. So maybe an update is due now…
Reading a few of the comments, it is impossible not to give credit to the misinformation campaign that the CDC started suggesting that the condition was DOP. Kudos!
My 2 pence worth,
GF
#55 Ursula
May 8, 2007

Dr Omar Amin mentions the fact that many of his patients were (inappropriately) diagnosed with delusional parasitosis, and were consequently admitted to psychiatric care.

As we all know, Orap (pimozide) is an excellent enough drug, but its efficacy is restricted to treating psychosis, (although it does additionally have anthelmintic properties).

If one reads Dr Amin’s publications, (a plethora of which are freely available on his website), it can be seen that many infected or infested patients were indeed transferred from psychiatric care to the rather more appropriate province of parasitology.

Dr Amin published all of this a few years ago, alerting fellow scientists and professionals to the actuality of a novel clinical syndrome, in which various types of insects and ‘unidentifiable’ fibers were respectively breeding and living on patients’ scalps. He termed this condition neurocutaneous syndrome (NCS), and the parasitology clinic is in Arizona.

Was it one of Dr Amin’s articles that you read, George?
#56 Ursula
May 9, 2007

Hi Laura and Tara,

In reference to an earlier post, I, from my scribbled notes on this have indicated that it was Professor Vitaly Citovsky who discovered the plant DNA on Morgellons disease sufferers.

This is the same professor who is undertaking the agrobacterium research on these patients, and who has in fact made the point that this bacterium usually infects plants.

I believe that some of Professor Citovsky’s findings have been presented on the media, but do not know if it was CNN.

Incidentally, some very prestigious scientists and MD’s have presented startling findings on other media outlets, some of which may not be ‘mainstream’.

For instance, Dr Spencer MD is a renowned neurologist. He is absolutely flabbergasted by the input of man made self-replicating nanomachines in the form of fibers as part of this syndrome, and has said that never, in his wildest imagination, would he have believed this would happen.

Yet, evidence exists to demonstrate to him that it has. Please see the Rense website, as all details are available in the transcripts of the radio programme.

Hi Smileykins,

I did not realise that I had misquoted you.

I thought that you said something about ill mothers not ensuring their children received medical attention when necessary.

I thought that you said this was because they were afraid, specifically of the authorities assuming custody of the children, were they to take them to the doctor.

Now, I cannot imagine why such mothers would be so afraid to take their sick children to a doctor, unless they felt that they would not be believed.

What other reason could there be for their fear of the authorities intervening in this way?

All I said was, if there exist mothers who are too afraid to take their sick children to the doctor, this is very bad.

I did not say that you said it was bad, so could not have twisted your words in any way.

It is self-evidently obvious that it is bad to deny a child who needs medical attention the necessary visit to the doctor.

If a loving mother, (who would otherwise make such a visit with alacrity), is too paralyzed by fear to do so, then I stand by what I said.

In fact, the situation is not just bad, it is downright evil from start to finish.

For the very sake of these sick children and their parents, will not some of you add your thoughts to this?

I am not asking you to speculate. I do ask you to look at the scientific evidence. Please. People are really suffering, and, in some cases, are being ridiculed and villified when they are in pain and at their lowest ebb, when all they are doing is seeking some companionship on the internet.

Who wants to be taunted and humiliated when all they are doing is communicating with their friends? Would any of you like to be attacked publicly in this manner when you are so sick, and have maybe lost just about everything?

If NCS is the same as Morgellons, it is untrue to say that no-one has died from it. A vulnerable person did. This too is in the literature, and I am not in the habit of relating untrue facts from reputable published sources.

If a vulnerable person can die of NCS, and if Morgellons is the same new syndrome, then it is perhaps possible that another vulnerable person could die of this.

I do not know. However, I do know of a young lady who has this disease, and who is firmly of the opinion that her little baby was lost to it.

Do you think that a heartbroken parent, who relates their anguish in a spirit of trust, would be immune to the public taunting in front of their friends? Apparently not.

I do not possess a word for that kind of behaviour. I cannot think of one that is bad enough.
#57 Ursula
May 9, 2007

Hi Laura and Tara,

In reference to an earlier post, I, from my scribbled notes on this have indicated that it was Professor Vitaly Citovsky who discovered the plant DNA on Morgellons disease sufferers.

This is the same professor who is undertaking the agrobacterium research on these patients, and who has in fact made the point that this bacterium usually infects plants.

I believe that some of Professor Citovsky’s findings have been presented on the media, but do not know if it was CNN.

Incidentally, some very prestigious scientists and MD’s have presented startling findings on other media outlets, some of which may not be ‘mainstream’.

For instance, Dr Spencer MD is a renowned neurologist. He is absolutely flabbergasted by the input of man made self-replicating nanomachines in the form of fibers as part of this syndrome, and has said that never, in his wildest imagination, would he have believed this would happen.

Yet, evidence exists to demonstrate to him that it has. Please see the Rense website, as all details are available in the transcripts of the radio programme.

Hi Smileykins,

I did not realise that I had misquoted you.

I thought that you said something about ill mothers not ensuring their children received medical attention when necessary.

I thought that you said this was because they were afraid, specifically of the authorities assuming custody of the children, were they to take them to the doctor.

Now, I cannot imagine why such mothers would be so afraid to take their sick children to a doctor, unless they felt that they would not be believed.

What other reason could there be for their fear of the authorities intervening in this way?

All I said was, if there exist mothers who are too afraid to take their sick children to the doctor, this is very bad.

I did not say that you said it was bad, so could not have twisted your words in any way.

It is self-evidently obvious that it is bad to deny a child who needs medical attention the necessary visit to the doctor.

If a loving mother, (who would otherwise make such a visit with alacrity), is too paralyzed by fear to do so, then I stand by what I said.

In fact, the situation is not just bad, it is downright evil from start to finish.

For the very sake of these sick children and their parents, will not some of you add your thoughts to this?

I am not asking you to speculate. I do ask you to look at the scientific evidence. Please. People are really suffering, and, in some cases, are being ridiculed and villified when they are in pain and at their lowest ebb, when all they are doing is seeking some companionship on the internet.

Who wants to be taunted and humiliated when all they are doing is communicating with their friends? Would any of you like to be attacked publicly in this manner when you are so sick, and have maybe lost just about everything?

If NCS is the same as Morgellons, it is untrue to say that no-one has died from it. A vulnerable person did. This too is in the literature, and I am not in the habit of relating untrue facts from reputable published sources.

If a vulnerable person can die of NCS, and if Morgellons is the same new syndrome, then it is perhaps possible that another vulnerable person could die of this.

I do not know. However, I do know of a young lady who has this disease, and who is firmly of the opinion that her little baby was lost to it.

Do you think that a heartbroken parent, who relates their anguish in a spirit of trust, would be immune to the public taunting in front of their friends? Apparently not.

I do not possess a word for that kind of behaviour. I cannot think of one that is bad enough.
#58 Smileykins
May 11, 2007

Exploiting mentally ill patients is illegal.

http://akmhcweb.org/Articles/NYTVoicelessDefenselessandaSourceofCash.htm

http://onlineethics.org/reseth/nbac/mpaper5.html

Testing those who can’t give informed consent is iillegal.

Child neglect is also illegal.
Animal abuse and neglect is illegal.
#59 BrandyTwirl
May 12, 2007

Dr. James Matthews, MD Endorses NutraSilver as an “Effective Therapy” for Some Morgellons Symptoms
Written by James Matthews, M.D.
Wednesday, 18 April 2007

Disclaimer: This information is being shared for educational purposes only, and is not intended to replace a proper consult with your physician for healthcare. No one should practice medicine on themselves or others without a license.

Dear Morgellons Community Members,

I have some preliminary data indicating that NutraSilver is an effective therapy for some of the symptoms, in some of the patients, suffering with Morgellons Syndrome, and after new drug applications have been filed, endorse trials of its use for this mysterious condition.

About 2.5 years ago, I met my first Morgellons patient and three months later, I became a patient myself.

I sorted through all available data, what little there was, and came upon the link with Lyme disease made by William T. Harvey, M.D., M.P.H..

I used almost every available method of Advanced Western Medicine over a period of two years, including variations on: the Burrascano protocol; Shoemaker Biotoxin-binding protocol; Marshall protocol; Sherry Roger’s detoxification protocols; a host of anti-parasitic medications; UV; Infrared; Saunas; Salt and C; Diatomaceous Earth; many immune boosters; regular Bikram, Dahn and Iyengar Yoga, and after all this, felt “ok”, and had been off of all prescription medications for about six months.

Then, about four weeks ago, I heard about NutraSilver and chose to try some personally.

Now, most people recognize that precipitation of a Herxheimer Reaction is a good indicator that your therapy is effective. In my case, I had precipitated these gently, and detoxified many, many times, and believed there was very little infection left in my body to cause a Herx. This turned out not to be the case. A unique, deep tissue Herx occurred which gave way to greater feelings of well being and physical health than I had previously experienced with any other method.

I recognized the potential value of this new therapy and immediately gave my two sickest patients my remaining samples.

In one of the patients, who had no lesions and had already been treated for about 1 year with my integrated protocol (above), we observed only slight improvement in his symptoms of creepy crawly and prickly sensations.

In the second patient, who had only just begun my protocol, and had been suffering with multiple bodily and facial lesions, the results were dramatic. Within days his skin started clearing. He declared he felt “very good”, with improved mental processes and mood, and increased energy.

NutraSilver is a special suspension of Ionized, Colloidal Silver in distilled water. The suspension is created through a unique proprietary process where water is negatively charged and clustered so that the silver is well suspended, and theoretically better absorbed. Colloidal Silver has a long history of use as an antimicrobial agent, and there are studies showing that NutraSilver kills multiple pathogens in culture very effectively as well. I’m not aware of any toxicities with any, silver products, and the only significant side effect ever documented is argyria. This is an irreversible condition of grayish coloring of the skin that seems to occur when too much of the wrong kind silver is ingested. Best estimates indicate that a healthy 70 Kg person would need to ingest about 10 grams of Silver to be at risk for this condition. By contrast, 1 drop of NutraSilver contains only 0.090mg of Silver. In other words, a person would need to ingest over 100,000 drops of NutraSilver to even theoretically approach the risk for argyria. This may be why there has never been a single case of argyria documented with NutraSilver. Further, I’ve seen a study showing that properly prepared Colloidal Silver taken for two months is purged from the body at the same rate at which it is consumed. And, half of the remaining silver was purged within one month of stopping consumption. Taken together, this data suggests to me that the risk of argyria from NutraSilver is probably somewhere between extremely low and insignificant.

Before considering use of NutraSilver with your personal physician though, everyone needs to know that in 1999, the FDA had declared in a “Final Rule” that, “all over-the-counter (OTC) drug products containing colloidal silver or silver salts are not recognized as safe and effective and are misbranded.” Ultimately, the FDA is the authority in this area, and this letter is in no way meant to undermine their authority.

On the other hand, we’re dealing with a special situation here. To begin with, Morgellons wasn’t widely known in 1999 when the FDA ruling was made, and even today, the CDC hasn’t recognized Morgellons as a disease. Further, many people in the community are suffering so much that they may feel, after consultation with their personal physicians, that given how some have benefited, a trial of NutraSilver may be worth the tiny risk of argyria. Given how some are suffering, I can even imagine people feeling that trading Morgellons’ lesions for argyria quite fair, and agreeable.

The choice to try it or not, is a very personal one, where each individual must consider: their degree of suffering; other options; costs; risks; the FDA’s ruling; and most importantly, the recommendations of their personal physician. Further, I now know that at present, NutraSilver is classified as a nutritional supplement and can’t officially be used for any diseases, symptoms, or relief, only water purification. So, any individual who chooses to use it off-label, does so, AT THEIR OWN RISK.

After consulting with their own personal physician, if anyone does choose to use NutraSilver for Morgellons, please let us know how it goes. We hope to compile data about any possible risks, and benefits, and use this information in a “New drug” application to the FDA for clinical trials.

Standing together now, we will find answers, and we will begin to offer more relief for those suffering.

Conflicts of Interest: A small percentage from the sales of NutraSilver is paid to Advanced Medicine, L.L.C., a new nonprofit company that I direct. 100% of the monies received go directly back into the support of clinical and scientific research in Morgellons. Using this method of funding, I hope to raise more money for Morgellons research within the next year, than all of the other organizations, in all of the previous years put together.

I will be available to answer some questions on the Morgellons Hope Community Forum.

Sincerely,

James Matthews, M.D.
#60 Ursula
May 14, 2007

Consent to therapeutic treatment.

Beauchamp and Childress, possibly the greatest American authorities on matters of medical law and ethics, assert that most adult patients are deemed competent to exercise their autonomy in matters such as these.

Thus, they may give their consent, or withhold, or later withdraw, their consent to any recommended medical intervention.

In the case of the adult patient who is presumed competent (most of us), provided they have been given sufficient information from the doctor or healthcare professional concerned, they cannot, broadly speaking, later expect to have legal grounds for complaint about the intervention undertaken.

This is known as the legal precept of volenti non fit injuria.

In cases where such a patient is quite happy with the treatment being administered in this way, their relatives would have no reasonable legal grounds whatsoever for a dissenting action.

American healthcare law is complex, and it is true that important differences can exist within the various state legislatures with regard to, e.g. what would constitute the legal standards of ‘the reasonable physician’ or that pertaining to the disclosure of all, or of any, ‘material risks’.

More in the way of information disclosure is required, and in some states this is actually statutorily mandated, if the treatment is ‘unconventional’ or ‘experimental’.

The presumption in law is that the patient is generally capable of consenting to therapeutic treatment.

Some patients may not be, although it is crucial to appreciate that a patient does not necessarily have to be competent in a legal sense in order to be able to give valid consent to recommended medical treatment.

Those who could be included within this category would include young children and those who are mentally disordered to a significant degree.

One cannot say, absent of a full medical assessment utilizing 21st century laboratory investigative techniques, that any patient who is complaining of symptoms indicative or suggestive of Morgellons/Fiber/Neurocutaneous Syndrome does not have this, or perhaps something else, physically amiss.

Even if such individual testing proved negative, we are still a long way away from being able to state that this growing surge of people complaining of such dreadful symptomatology is indicative of each of them suffering from significant mental disorder to such a degree that their capacity to consent, (or even to dissent?), is legally compromised.

America is the land of the free. Thank God for that, and for free speech, and for the rights of people to fight for, (and to obtain) a CDC investigation.

Thank God that it would not be lawful to round everyone up who thinks that they may have what sounds like a dreadful disorder, and just consign them all to one diagnosis, and prescribe them all one drug.

Each person has to be diagnosed and treated correctly.

Any diagnosis of delusional parasitosis is one of exclusion.

That really is a medicolegal principle.
#61 Ursula
May 14, 2007

Re the agrobacterium finding.

I am sure that I read somewhere that this microorganism was in some way related to the small blue fibers often found ‘wriggling’ within these patients’ painful lesions.

I see that the relevant report supra refers to biopsies taken from these patients, so that these could be compared with biopsies taken from non-sufferers. This would be necessary, because normal people do not have small curly blue fibers, nor indeed do they have small scarlet ones either, not to mention the translucent ones, the white ones, the long black or indeed the tan ones, all of which have been documented by the scientists and medics who are taking this seriously.

Dr Wymore has stated that the fibers can be detected under the affected patient’s skin.

Dr Spencer (neurologist) has agreed that the fibers can apparently burrow into tissue.

One patient is on record as having the fibers taken out of her painful knee joints, and other surgery, to the complete astonishment of the surgical team.

One common symptom within this condition is that, when the patient touches one afflicted area, the pain is felt there, but is also experienced (instantaneously) in another bodily area.

What could account for this?

Dr Amin treats the affected patient’s lymphatic system when necessary.

Other patients (not being treated) complain of what sounds very like lymphatic blockage on occasion.

The more of the scientific and medical literature that I read, the more I am impressed by the sheer hard work being undertaken by the scientists and doctors concerned.

The more I read, the more I am impressed by the emerging legal perspective. People have important legal rights to be treated quickly when time is of the essence.
#62 Smileykins
May 15, 2007

Ursula, you said:

Hi Smileykins,
I did not realise that I had misquoted you.

You didn’t misquote me, but what you had been doing after my comments is immaterial. I can’t be engaged in entertaining such falsehoods.
#63 Ursula
May 16, 2007

Hi Smileykins,

I participate in this discussion, and may respond to others’ comments, after reading the relevant contemporary literature.

It is good to know what the latest research states, particularly regarding the human body and the law.

Naturally, I am not giving individual legal advice, but I think it only fair to be as accurate as possible, lest people think that legal rights and duties exist in circumstances where they, in all probability, would not.

I think you said a ‘family member’ could pursue an action in law on behalf of a ‘morgie’ who is receiving treatment, on the basis that the need for this type of intervention is disputed (by you).

What I did, in my previous post, was to outline the position in law regarding consent to therapeutic treatment, and the general presumption of competence on the part of the adult patient who voluntarily proffers the said consent, and the consequent lack of legal standing on the part of such a patient’s ‘family member’ autonomously to pursue a dissenting action.

This is the law, so I fail to see how this could be regarded as a ‘falsehood’, just as I cannot see how the accurate presentation of the relevant published research findings could be similarly described.

Incidentally, there has been an update to Professor Citovsky’s initial findings (as stated in the original post supra), so the real legal issues worthy of discussion might include:

1. The rights of others, (who satisfy the diagnostic criteria for this putatively new syndrome), to be similarly screened.

2. The rights of those patients, (whose biopsies were positive for this bacterium), to be further assessed by a doctor, who could prescribe any necessary treatment in the light of their individual results.

3. NB, the fact that the patients’ biopsy samples were ‘anonymous’ does not remove the legal duty of care in these circumstances.

100% of the biopsy samples submitted from patients with Morgellons disease, (including those further patients discussed within Professor Citovsky’s update), yielded positive results.

0% of the samples submitted by the normal control group yielded positive results.

Therefore, there exists a direct duty of care, viz. to ensure that each of the patients whose biopsy proved positive are referred to a physician within the relevant specialty as quickly as possible. This professional could discuss any proposed treatment plan with the scientists concerned.

Anonymous data is not legally synonymous with confidential data.

The sample size of Morgellons patients is small, and all have had positive results, so there should be no reason for delay in correlating these results to the actual individuals who were biopsied.

In any case, the individuals themselves will know that they were biopsied, and (if they were within the Morgellons disease cohort), the results were 100% positive.

They should seek further specialist advice re the advisability of receiving specific therapeutic intervention.

Whether or not a scientific endeavour is carried out on the basis of ‘research’, it is the rights and well being of the identifiable patient that is paramount.

That is not an ethical viewpoint per se. It is the law.
#64 Ursula
May 18, 2007

Professor Citovsky has probably already communicated with the relevant individuals regarding treatment that may be required for the patients whose samples were tested in his laboratory.

Although this was a small sample, so is the overall prevalence of agrobacterium being implicated in human infection.

I do not think the (hitherto) prevalence rates quite reached 20, and we also have to differentiate between the agrobacterium genus and the four species contained within it.

It additionally matters greatly where (in the body) the infection occurs.

Prior to an article published in 2003, the agrobacterium tended (still very rarely), to infect only those who were immunocompromised, and usually had indwelling foreign bodies, (such as catheters).

The very first reported case was in 1980, when Plotkin reported a case of A.endocarditis.

The 2003 article reports the devastating loss of eyesight in two middle aged ophthalmic post-surgical patients, who were not immunocompromised.

The authors raised their concern re this, and warned that the intensive regimen of antibiotics did not make much difference to the quite devastating outcome (in these two cases).

Was it A.tumefaciens that was found (for the first time)in these new patients’ biopsy samples by Professor Citovsky?

Or was it A.radiobacter?

What treatment regimen has been advised for the patients with the positive results?

People with this condition, (or who think that they may have it), must use this latest finding to make a specific request for a specific assessment.

They should state the statistics, and write to the CDC (or the ECDC in Europe), as well as contacting other relevant officials or agencies, e.g. perhaps the EPA.

They have the legal right to be assessed.

I am not saying that every person who thinks that they have this does have it, and I am not saying, just as Professor Citovsky is not saying, that this is the only causative, or risk, factor in this putatively new condition.

NB Dr Amin stated that the patients (with NCS) were, for the greatest part, immunocompetent also.

Furuncular myiasis of the scalp would tend to occur in the immunosuppressed (generally).
#65 Smileykins
May 19, 2007

I think you said a ‘family member’ could pursue an action in law on behalf of a ‘morgie’ who is receiving treatment, on the basis that the need for this type of intervention is disputed (by you).

All right, Ursula, I know I’d said a while back that “I always respect others opinions. I have an exception to that rule on the matter of “morgellons disease”. You have my permission to continue addressing me. You have my permission to continue twisting what I say.”

I made myself clear that I was alluding to health fraud.

US Code — Title 42, Chapter 114, Subchapter I, Part A § 10801.

Congressional findings and statement of purpose, was what I was referring to.

(a) The Congress finds that–

(1) individuals with mental illness are vulnerable to abuse and serious injury;

(2) family members of individuals with mental illness play a crucial role in being advocates for the rights of individuals with mental illness where the individuals are minors, the individuals are legally competent and choose to involve the family members, and the individuals are legally incompetent and the legal guardians, conservators, or other legal representatives are members of the family;

(3) individuals with mental illness are subject to neglect, including lack of treatment, adequate nutrition, clothing, health care, and adequate discharge planning; and

(4) State systems for monitoring compliance with respect to the rights of individuals with mental illness vary widely and are frequently inadequate.

(b) The purposes of this chapter are–

(1) to ensure that the rights of individuals with mental illness are protected; and

(2) to assist States to establish and operate a protection and advocacy system for individuals with mental illness which will–

(A) protect and advocate the rights of such individuals through activities to ensure the enforcement of the Constitution and Federal and State statutes; and

(B) investigate incidents of abuse and neglect of individuals with mental illness if the incidents are reported to the system or if there is probable cause to believe that the incidents occurred.

There is not a single person who thinks they have “morgellons disease” in possession of an appreciation for the illness they have, or of the treatment prescribed by their many legitimate doctors.

THE END. Smileykins

Twist that.
#66 raven
May 19, 2007

Just skimmed this thread. I don’t have Morgellons although I have pulled a more than a few lyme disease ticks off myself and my pets.

Has anyone ever been cured of Morgellons? Is it curable? The patients sound miserable whether it is psychogenic or not. But without knowing the cause, expecting a cure from medicine is all but impossible.

Treating the symptoms is the best to be hoped for.
#67 Ursula
May 21, 2007

Hello Smileykins,

Re ‘health fraud’ –

If a patient voluntarily consents to treatment that is proposed, with all necessary details disclosed, and this by a registered healthcare professional who is skilled in that particular art, then the consent is, prima facie, legally valid.

The validity of consent to therapeutic treatment rests on it being voluntary, competent and enduring.

Did the Patient Want the Treatment?

The vast majority of patients with this, (or who think that they may be suffering from this), putatively new clinical condition desperately want treatment, (as attested by the many websites and organisations founded for this purpose), so the aspect of ‘voluntariness’ is largely met.

Competence to Consent.

If such a new physical condition does exist, it may occur in the mentally well and in the mentally ill.

Mental Illness and Competence to Consent.

Having a mental illness is not, in itself, synonymous with lacking the capacity to consent to therapeutic treatment, particularly if that proposed by the doctor is for a physical disorder.

Treatment of Infection.

Therefore, if treatment is prescribed by a doctor for the agrobacterium infection found, e.g. in a patient’s lesions, the competent person, (whether suffering from a mental illness or not), may happily accede to this.

American Healthcare Law and Competence to Consent.

The legal test of competence in American law is met when the patient can broadly understand the nature and purpose of: the proposed treatment; any likely side effects; and the availability of alternatives (if applicable).

Medical Evaluation: American Law.

Provided a given patient can meet this legal test at the time in question, (i.e. the doctor’s evaluation) the consent to treatment is legally valid.

Medically Procured Consent Based on Above Test.

Such a consent is legally valid even if: the patient is otherwise legally incompetent to the extent that they cannot manage their affairs; they cannot enter into or make a contract; they cannot make a will; they cannot autonomously meet their physical care needs; and is so even if the patient is subject to a court-approved guardianship or conservatorship.

Medical Assessment of Incompetence.

If a person is not able to understand the nature of the treatment proposed by the doctor, (e.g. is unable to grasp what is meant by ‘infection’, and the need sometimes to take ‘pills’ to make this ‘better’), he or she may be professionally assessed as incompetent, (by reason of either age or infirmity).

Note that this is an individual assessment carried out by a qualified professional after examining the particular patient concerned.

Treatment of Patients Lacking Competence to Consent/Best Interests/Substituted Judgement/Necessity/Implied Consent.

If the treatment for a given infection is in the incompetent patient’s best interests, and both doctor and parents, (in the case of a very young child) agree, this should of course be given.

Charters, Codes vis-a-vis Legislation and Common Law.

The document presented by you clearly sets out the legal rights of the ‘competent’ mentally ill to choose to involve ‘family members’ as advocates.

Being chosen as an advocate may well lead to good practice, (e.g. the doctor clarifying a treatment decision).

Law of Delict or Tort.

It does not confer legal rights enabling a ‘family member’ of a ‘morgie’ autonomously to pursue legal action, particularly when the patient is quite satisfied by the treatment prescribed by their doctor.

I should be very careful in alluding to terms such as ‘health fraud’.

Patients Rights.

Individual patients have the legal right to be assessed, diagnosed, and treated.

Patients Diagnosed and Currently Receiving Treatment.

Those currently receiving ‘shot-gun’ treatment, (on the basis of the treatment for Morgellons disease being allowed in states whose legislatures permit innovative therapeutic regimens), would seem to be in a position whereupon they could assert their legal rights now to be screened for the presence of agrobacteriun infection.

Disclosure of Anonymised Data.

The results of any such testing should perhaps be shared on the grounds of the public interest, given that this extremely rare (agrobacterium)infection has been found in 100% of the samples submitted from patients with Morgellons disease to none other than the most illustrious Professor Citovsky.

CDC Investigation.

It would therefore be prudent if individuals who think that they may have Morgellons disease would, instead of enquiring generally about the stage of a wide investigation, enquire specifically about the startling results even currently in the public domain.
#68 Ursula
May 21, 2007

Hi Raven,

It is good of you to take an interest. I think that Dr Schwartz has said this condition may be curable in its early stages, although other authorities have stated that the prognosis is largely also dependent on the affected person’s immune response, or on their immune system.

Most practitioners (and their patients) have reported a dramatic improvement after receiving a prescribed protocol of treatment.

Some of this has been based on symptomatic relief.

Some of this has been based on specific clinical findings, such as a large percentage of patients with this condition also testing positive for Lyme disease.

It would not be the firat time that medicine has treated a disease or syndrome where the precise aetiology is obscure.

A lot of diseases are diagnosed on clinical grounds, and are treated, even if the precise cause is not known. Some auto-immune diseases fall into this category, (sometimes the markers for these are never found in the patients’ blood samples). Yet, no sensible clinician would deny such a patient treatment.

At the very least, the testing for further incidences of the agrobacterium infection being implicated should surely be debated by those conductung the CDC investigation.

After all, those who have already tested positive are apparently to be seen by their physician, so that treatment decisions may be considered.
#69 Smileykins
May 22, 2007

How long have you had it, Ursula?
#70 Ursula
May 22, 2007

Hi Smileykins,

I am unsure of what you mean by ‘it’, but suppose you might mean the urge to write about matters pertaining to contemporary healthcare law.

Such activities do keep the proverbial wolf from my door, so that is one reason, I suppose.

I am grateful for excellent sites such as this, as I learn far more from the biomedical scientists, (many of whom are also excellent writers), than they can ever know.

I suppose your question can be partly answered by the thread on this site entitled ‘Why do I blog?’.

It is also good for those who write for publication to keep practising, given that writing is a skill as much as anything. It is too easy to get rusty!

Furthermore, it is very important to contribute to something when it is crucial to human health and happiness, rather than just churn out the same old stuff for the journals and textbooks.

I think, if this is a new syndrome, it must indeed be systematically investigated, (as the CDC are of course doing), and, as Tara said, the whole area is fascinating.

I did, initially, think that ‘electronic’ sources were possibly being incorporated into delusional networks in a way that has never been documented before, (at least not to this extent).

Naturally, any writer would look at the evidence before making him or herself, and their professional colleagues, look ‘like a bunch of eejits’ as one colourfully put it.

Agrobacterium infection cannot be psychogenic, and neither can it be delusional.

The same logic would apply to a person testing positive for Lyme disease.
#71 Smileykins
May 22, 2007

I meant, how long have you had “morgellons disease”?
#72 Ursula
May 22, 2007

That is too clever a question for me to answer. I would never have thought you meant this.

You do not seem to believe in ‘it’, so how could I know that this was the ‘it’ you meant when asking me how long I had ‘it’?

How may one measure the dimension of time against the possession of something that does not exist?

Then, when I innocently, but unfortunately, answer you all wrong, you feel the need to make the question explicit.

Why would you make the question more explicit if you do not believe in the disease?

Aha! Maybe you are more in the way of being an agnostic about it, or maybe you do believe in it, but are playing the devil’s advocate, (so as to keep the discussion, media interest and further research going!).

That is clever! So is the skilful repetition of Dr Amin’s thesis (re the patients with fibers and parasites being wrongly diagnosed as delusional, admitted to psychiatric facilities, from where he and his colleagues transferred them to the parasitology clinic in Arizona in order for the proper treatment to be administered).

May we all help, in our individual ways, to ensure that all patients who are needlessly suffering are correctly diagnosed and treated.
#73 Smileykins
May 23, 2007

Ursula, how recently did you hear of “morgellons disease”, and have you refused any prior diagnoses and treatments, like the others?
#74 Ursula
May 23, 2007

I heard about ‘morgellons disease’ quite recently.

I am unsure of what you mean by ‘refusing’ prior diagnoses. Is it conceptually possible to ‘refuse’ a diagnosis? I do not think so, although one may ‘refute’ it, or, more correctly, raise awareness among one’s professional colleagues of any new clinical syndrome that could call into question certain presumptive diagnoses that may otherwise be entertained.

This would appear to be the method employed by Dr Amin, for example. It is my understanding that a communication from this professional indicated the existence of a de novo clinical syndrome, and stated that more information would be released within the professional literature, which has of course proved to be the case, (concerning his research into neurocutaneous syndrome).

Patients may, if a doctor thinks that this would be beneficial, be referred to the parasitology clinic, so that diagnosis and treatment can (if appropriate) take place.

I do not know what you mean by ‘refusing’ treatment. Any adult of sound mind may (absent supervening circumstances) refuse treatment, but I do not think that many would, once they had gone the length of being individually assessed at this clinic.

I am most certainly not refuting the need for treatment in neurocutaneous syndrome, and firmly believe that any person with the cardinal clinical features of this should, if at all possible, be referred to Dr Amin’s clinic.

I am unsure of who ‘the others’ might be.
#75 Smileykins
May 24, 2007

Ursula, you may not feel that you have this disorder, although you certainly appear to, with all of the false statements you make about it, and about everything that’s associated with it. Speaking as though you know what you’re talking about affects other susceptibly vulnerable people, just as what you’ve read, and chosen to believe, has affected you.
#76 Ursula
May 24, 2007

I believe Professor Citovsky, and find his initial research findings very interesting re the agrobacterium and its association with the samples he tested.

I believe Dr Amin, and have found his research very interesting also. He is a world famous parasitologist, and has advised the CDC in the past.

So, no false statements there, or in any of the other research that has been, and is being, carried out by renowned scientists and physicians, such as Dr Spencer.

I do know what I am talking about when writing generally about healthcare law, but I am humble enough to check contemporary academic sources before doing so, and, additionally, always make it clear that I am not giving individual legal advice. People must consult their own firm of lawyers for that, because everything depends on the individual case and its merits.
#77 Ursula
May 24, 2007

Hi,

It looks as though some dermatologists are taking this more seriously now.
#78 Smileykins
May 25, 2007

Just what the “morgellons patients” need — more people thinking they’re authoritatively writing about “morgellons disease” when they just recently heard about it.
#79 Ursula
May 25, 2007

This is exactly what patients need, as, once the dermatologists (to whom I have referred supra), present their case findings to their professional peers, there will indeed be a profusion of authoritative writing.

The fact that many of these clinicians may only recently have heard of this putatively new syndrome of uncertain aetiology when they put quill to paper, (and, perhaps pen to prescription pad), does not matter.

Most physicians are highly intelligent, and very quick at grasping the essential facts.

If these dermatologists are, at the very least, considering the possibility of Morgellons disease being a new clinical entity, and if they have official backing at the highest level, then who are we to question?

Did you really think that the latest startling scientific findings would be disregarded and thrown into that which nature abhors, viz. a vacuum?
#80 Ursula
May 25, 2007

Hi Donna and Barb,

I am sorry that you feel you are suffering from this disease.

I do not say that you definitely have this, (or, conversely, do not have this), because no-one should be ‘diagnosed’, other than by a physician, and nor should this take place without an individual examination and assessment.

I am saying this to encourage you not to despair. Things are moving now, and may well be in the mainstream of conservative medical thought after the summer.

I would never make something like this up.

All I know is that certain mainstream dermatologists are at least considering the possibility of this being other than a factitious disorder. I may know more in August/September 2007.

Certain hospitals have viewed the video referred to by Dan. I have no idea if any physician believes this theory, or, conversely, does not believe it.

The aetiology may be obscure.

If individuals cannot wait, why do you not consider being assessed by Ginger Savely (Nurse Practitioner), or by Dr Amin, or by the physicians who currently treat patients with this type of disorder?
#81 Smileykins
May 25, 2007

Ursula, your admitted, recently acquired, superficial interest in “morgellons disease”, and your take on reality is absolutely flawed.
#82 southcity
May 26, 2007

Once you are able to put the political nature of this illness into this equation, it becomes easy to see the reasons for the efforts being made to discredit, distract, ridicule, or otherwise misdirect inquisitive people down paths leading to nowhere.

In my dealings with this issue, I have been reminded of a quote by Gandhi.

“”First they ignore you…
Then they laugh at you…
Then they fight you…
Then you win.” -Mahatma Gandhi

Take it from me, the people representing the establishment, both from industry and the political arenas, are very, very good at what they do. Slight of hand and sneakiness doesn’t come close explain the tactics being used.

Take morgellons for example:

I was one of the small handful of people to be active with this issue on the net. Not only to find out what the hell was happening to my body, but to find some relief and treatment for my symptoms. This was close to 5 years ago. I now have the guilt of having most likely given this nightmare to my girlfriend. Last year we lost an 18 week pregnancy. indeterminable cause. And yet we still consider ourselves fortunate simply because there are others who have it much worse, their suffering is enormous.

Here is a brief, also far from complete, rundown of the concerted efforts underway towards keeping this issue from gaining to much attention.

1st

The ongoing general reaction from the medical establishment is a psychological diagnosis. This is still very much so being promoted by many in the medical fields. Thankfully, this is changing. Hell I didn’t care if it was mental or physical, I just wanted it to get better, so I went to the referred shrink who then sent me back to a dermatologist as he determined I was rational and competent, and believed himself there was a definite pathology involved. But numerous doctors continue to tell me/us, that it was all in our heads.

2nd
The Doctors and scientist that had recognized this as a problem, all the sudden found themselves in various career ending type problems and situations.

DR. Goldhagen- director of human health services in Duval county Florida

Dr George Schwartz- had his license to practice revoked

Dr Stricker and RN Savely have both been under increased scrutiny

Dr Wymore has taken a good share of abuse and had his beliefs questioned.

Several other practicing physicians have now claimed to be infected, but their words and opinions fall on deaf ears and they have otherwise been ostracized and publicly doubted and questioned over their mental status. There are many other examples but I think you know where I am headed here.

3rd
Our own Tax paid, Health Monitoring Agencies, continue to ignore the whole issue. Short of some small amount of lip service given to simply sound competent and capable, they have done nothing. There are letters from congressmen to the CDC asking for action around this since 2004!! Still nothing substantial has been heard from them. My communications with the CDC can be read @ crossinglines.net…

The reality is, and this is a fact, if or when we are attacked with some sort of incapacitating, slow acting bioweapon, we are screwed, I mean really screwed as it appears these trusted agencies actually have their heads up their asses, or are ultimately caught up in giant sized conflicts of interests, or are otherwise scared to stick their necks out from the status quo because of fear of the loss of capital gain.. They can’t even catch the people who sent us our own, USA manufactured anthrax. Hmmmm. Mom always said that If it LOOKS like bullsh*t, and smells like bullsh*t, It is almost certainly Bullsh*t.

4th
There are several groups actively working on swaying public opinion, particularly on the internet. Morgellonswatch.com comes to mind as the most active. These people(smileykins), possess zero accreditations, have admitted previous psychological problems, continue to push their beliefs so relentlessly that it appears that it is actually them that have a screw or more loose.

The types of ridiculous explanations these skeptics have offered, have gone so far as to say that sufferers create their lesions by scratching and then intentionally shove fibers into the lesions, or my favorite, injecting the fibers under their skin, or having a spouse do it to and for them. Unbelievable.

5th
Others say this is all a viral campaign for some movie coming out.

6th
Now they are linking it to chemtrails, another non proven conspiracy theory. They say you are known by the company you keep, so they continue to tie this in with activists and conspiratorial types to continue the smoke and mirrors game.

My prediction is this illness will be used ultimately for some political purpose or blamed on a terrorist attack with possible quarantines and further degrading of our liberties and freedoms, but again this is just a guess on my part. Let’s all hope I am wrong but once looked at closely, one cannot say that there is not a concerted effort underway, to negate the reality of this bugs existence.

southcity
#83 southcity
May 26, 2007

A Logical reaction would be to ask “why?” statements such as my previous post could be reality. This question, which I have also asked, is best answered by an email I received from the scientist who has performed the initial isolation of this infectious agent. Here is that letter.

—–Original Message—–
From: perdaniel
[mailto:quorumsensing@hotmail.com]
Sent: Friday, February 02, 2007 5:29 AM
To: southcity@crossinglines.net
Subject: RE:

South,

“You are a fine and noble personality but you seem to be not very well informed about the idea “general attitude”

If there was interest in my rather involuntary mission I would have noticed more response.

Again, a “foreigner” with a world issue under his arms is not appreciated.

The Political nature is such that Nobody will opt for putting bi-lateral relations at risk, and the media will only go for the matter if public momentum is inevitable.

In the world of science all happen to be equipped with a strong memory.
If one international body would start to point at the other, all would be put seriously at risk.

At this moment the scientific world has started a discussion about AIDS and how ethical all has been.
How ethical all has been!
And the majority still will talk the matter back into the bushes.

I despise activists, conspiracy theorists, alarmists, whatever recalcitrant and organized critique you can think of, but I seriously feel motivated by the idea that you have the democratic spirited right and duty to point things out by mentioning the thing by its proper name.

If later on, you will get to know what this target is doing in culture, and what this accounts for in theory and maybe in practice, you may have a world wide revolution going on.

Basically the organism has a full, but translated blue print of another human being in its design.
This next to a full but translated blue print of at least one mammal, maybe a bird, but for sure insect, parasite, fungi and plant.

An X number of cultures will in a reject like way sometimes throw out a perfect or near perfect genesis of initial dominant gene input.

All this happens to be with the presence of one peculiar and unexpected phenomenon to know; sometimes rapid fusion resulting in the genesis of a known entity but with absence of an embryogenic stage.(….)

The genesis of the insect happens to be more massive and with a bigger dimension than the mammal and human entity!

All used method has been stowed away in one of the most oldest life forms on earth with the use of top technology of already the past.

This type” information” now seems exponentially to proliferate in the environment and to create momentum in body it feels most comfortable with, to know water and soil; including freshwater supplies, lakes, rivers and the vast ocean.

They can’t stop it South, they can’t keep science at pace with the speed nature integrates this type element in every life form that is around.

Cyano and algae, and more general; plankton, represents the biggest body, the biggest weight, the biggest decision maker, because it represents the source code of all life that is present.

Like with any true disaster, people stop thinking and expect that the other ones will do the job.

But not a lot happens; except that they are working on an collective alibi under the name “bio diversity” and “climate change”

Bio means life, and a more proper terminology would be bio climate change.
Scientific models already integrate the introduction of a wide set novel
(uncontrollable) conditions.

They take swabs from all over the world from people that live in remote places, as a reference tool to understand where things for this splendid and organized world have gone wrong.

Sincerely,

Perdaniel
#84 southcity
May 26, 2007

Now as far as this person i have referred to is concerned, he has made the statement:

“As You may understand I have deducted all my earlier statement from a first assessment.
About 99% of the true professional will surpass my assessment as soon as they are able to culture this element in laboratory setting. But this will take at least a half year if not longer.

I took consciously the risk to be ridiculed by the professional.
And I have not run test because test have to be done by an accredited Institute or company if the result must be further used as guidance for further scientific research.
Still I think I will hit with at least a favorable 75% accuracy.
Its shot gun technique.

All is done with an attitude of charity towards woman and children.
Most scientist would breed on the subject matter another five or ten years before getting conclusive. And almost nobody would go public.”

“Today I keep a set perfect virulent strains (mold form) Analysis of inherent systematic has superficially been done and is rather correct.”

So what we have not heard from is any institute which may have taken the offer to further screen this agent he claims to posses in pure virulent form.

Logic would state that many accredited institutes have surely gained a sample for further screening, if for nothing more than to dismiss the statements being made.

Logic would also infer that since no such dismissal has happened, the reality and significance of his work must be investigated further, with complete transparency and publicly shared results.

This simply will not happen however, without being ordered by a court of law together with the oversight of said study provided also by the court. A very good attorney is desperately needed at this moment in time.

Any interested legal professional is encouraged to contact me at southcity@crossinglines.net
#85 Smileykins
May 27, 2007

Well, how ironic. I’d had a premonition to say hello to you right after I’d posted a comment to Ursula, last night. Hi, South!!!

I’ve told you, before, that Tam-tam/Perdaniel isn’t a scientist, and you can’t believe it. I know that it’s not because you refuse to, I know that you geniunely CAN’T. That guy is real sick, getting his kicks from playing a very dangerous game with some very vulnerable patients. It’s just awful that the experience you’d had five years ago caused you so much more ongoing distress, and that everyones’ unfounded beliefs have led you, and others with similar experiences, so far away from reality.

I don’t appreciate your saying that I’m “a skeptic” of “morgellons disease”, any more than I’ve appreciated your telling people that I’m anything ranging from a government agent, to someone involved in genetic science. I’m none of those things. I know what “morgellons disease” is.

You need not feel any guilt over anything with your girlfriend, man!!! She’d once said she has skin allergies, and she was diagnosed with an adenoma on her pituitary gland, too!!! Remember (among other things), all of the clumps of hair she’d lost down the drain, and the trouble from back then? Get her to an Endocrinologist. What type of underlying health condition YOU have, I don’t know, because you always refuse-to-say, when I ask.

I’ve made NO SECRET about my interest in this matter, South, and quite a few “morgellons disease” patients/victims/believers have made no secret in telling their obvious conditions, which are directly responsible for initiating a state of delusional parasitosis. I guarantee no one will ever improve as long as they don’t treat their underlying conditions.

The CDC has reacted in a positive way to all the pressure, but they can’t meet all of the “morgellons disease” patients’ demands, handing over a quick and simple answer to your diverse health problems. It’s unreasonable to not accept that all the studies they conduct take time. You could get well on your own. If you don’t know how, you could seek a local health care advocate service where you live.
#86 Ursula
May 29, 2007

South city,

My heart goes out to you, as you are a person both of high integrity and intelligence, and you also have a God given ability to perceive, in that you know the truth when you hear it.

‘Dare to be a Daniel’ has never been a more apt saying. This courageous person will be remembered throughout history. We are living in exciting times, (sorry if this is rather glib, considering the suffering some are enduring), but it is good to capture the interest of physicians and scientists, and it will be exciting for them to apprehend and master this apparently novel clinical phenomenon.

Daniel, or Tam tam, is truthful, accomplished and accurate. How else would he be able to write about what this affliction (if part of it settles and grows there)potentially does to the human eye?

How else would he know that, if the ophthalmologist shines the slit lamp to the side of the affected eye, a brownish mass may be seen? How else would he know that the visible element of the affliction tends to be concentrated at the side, or at the back, of the eye?

Dr Schwartz has mentioned that some have lost their eyesight because of this very condition. (Maybe only in the one eye, I am not sure).

The EU Morgellons site tells people that they may become blind, or partially blind.

This is unacceptable. Totally.

There is nothing superficial about my knowledge, Smileykins, in that I have read everything that the experts have had to say about this putatively new condition.

I have only heard of it recently. So has everyone. It is a recent epiphenomenon.

Anyhow, to South city, and your girlfriend, I am deeply sorry for your loss, and am very much in admiration for the strong and resolute way in which you continue to fight back.

What everyone has to appreciate is that ‘truth will out’. Certain dermatologists are taking this seriously now, at the very least in the format of debate. Certain hospitals have viewed the video at Crossing Lines. Whether individual professionals have been swayed by this in conjunction with the latest startling scientific findings, compounded perhaps by seeing a patient, I cannot say.

If this is a new clinical condition, and if a dermatologist develops it, he or she would soon spot the difference that apparently exists between normal skin, known pathology, and this.

Just as a good dermatologist would spot the difference in a patient.

Dr Wymore can see it. So can Virginia Savely. So can Dr Schwartz. So can Dr Amin. So can many of the other professionals involved.

The finding of the agrobacterium in the lesions must be explored further. How did the referring doctor know that this might happen? Others have previously hinted at this.

The main thing is that things are moving on.

Every person does have the right to be individually assessed.
#87 southcity
May 29, 2007

Any facts or proof as to the validity of your statement, smileykins? you appear to make claims such as you do, from a personal hunch or gut feeling. Please explain the reasons, in detail, for your certainty.
#88 southcity
May 29, 2007

Ursula,

Thank you for your kind and encouraging words.

South
#89 Ursula
May 30, 2007

Hi South city,

Once some ‘mainstream’ dermatologists give this condition some credence, even at the level of debate, things will move forward.

We are approximately at that point now.

This was bound to happen, as more and more people are apparently exhibiting a very strange set of clinical features, and yet there is a strong correlation between these, and most certainly enough to suggest that the sufferers may well have the same condition (or aspects of the same syndrome).

It is insufficient to argue, ‘We all have the same symptoms!’.

The adoption of strange symptoms could be attributable to internet surfing. The symptoms are very strange indeed, as is some of the aetiological theorising, so it is little wonder, given the role of attribution theory, that people have been perhaps inappropriately pigeon-holed.

It is the strange signs that will convince scientists and physicians.

You must interact with scientists, physicians and lawyers in a language that they respectively use.

I think it is better to break down the issues. I think the agrobacterium finding in human tissue is a strong lever.

Affected ndividuals should write (just as they wrote before), demanding that they be screened for this.

The rationale is to be found in Professor Citovsky’s communications. Did he say that those with a positive result need treatment? Did he say that 100% of the morgellons disease samples tested positive, and that this is the first time this bacteria has been found to infect human tissue?

It might be easier, (if necessary), to obtain legal counsel for this one issue.

This is all too big, so the breakthroughs will happen piece by piece.

The experts who have written about this condition should get together and present a more homogenised theory, in which it should be very clear what has been proven by laboratory testing, and what has yet to be done.

Time is passing, and too many people are needlessly suffering.

Some people who are convinced that they have this condition might have something else. They need to be assessed and treated appropriately.

There is a little known psychiatric condition called ‘compensation neurosis’. Powerful unconscious mechanisms come into play, especially if those afflicted with this previously believed that they had Morgellons disease (or similar).

In other words, this is all very far from simple, and some people may tend to act out.

They should not be treated too harshly, because of the unconscious nature of their particular problem, although those diagnosed with an illness should not have to take abuse either.
#90 southcity
May 31, 2007

Hello Ursula,
perhaps you could answer a hypothetical question I have. Would a person have a personal injury or similiar type of case against a person or group that has or had been active in and/or successful, in their attempts to deter or incorrectly influence any decisions of, or in the determination of whether or not an investigation or research was needed, concerning any type of newly emerging sickness or malady?

Thanks in advance
South
#91 Smileykins
May 31, 2007

I had better answer that, since Ursula and you share a certain something, South. The answer is NO, emphatically, NO.
#92 Smileykins
May 31, 2007

Southcity, I emailed you the source of my info about your girlfriend’s pituitary adenoma a couple of days ago. There were very personal comments that she’d made inside that link, even though it’s available for public viewing. She should not have stopped taking the presciption medicine to shrink that growth, and she’s needed to be under a doctor’s care for it all these years. Please, somehow, get her to the doctor for it as soon as possible.
#93 Smileykins
May 31, 2007

Knowing the ill-conceived standpoint that “morgellons disease” patients/believers view the world from, I answered the legal question accordingly, South. Nobody is interfering with the CDC’s investigation.

From reality’s point of reference, Adult Protective Services could step in and investigate complaints of coercion and interference with a vulnerable person’s need for care. When one person is just as ill as the other, heck if I know who could help, in that case, but anyone coerced into this false belief by the likes of the aforementioned “doctors”, most definitely has a solid case to report to the authorities. O know that none of you can pursue it, but there is excellent reason to.
#94 Smileykins
May 31, 2007

Excuse my typos. Can’t see well, tonight. Please take care, South, and do the right thing.
#95 Ursula
June 5, 2007

Hi South city,

The first thing I would say is that obtaining a higher degree in health care law takes a lot of academic effort, and it is crucial to realise that it is a discipline. One has to state what the law states, not what one ‘wishes’ it stated.

I should say that this is a common error, and it seems to be what Smileykins is doing. I am afraid that her legal analysis, from premiss to conclusion, is incorrect.

The hypothetical question posed by you is:

‘Would a person have a personal injury or similiar type of case against a person or group’….

If a person suffered any type of injury, (or further injury), because of the legal negligence of another person, or ‘legal person’, or organisation, they may have a case.

For an act in negligence to lie (have the legal potential to be successful)the plaintiff or pursuer (the person bringing the legal action)has to establish three things.

1. Duty of Care.
2. Causation.
3. Harm.

I would tend to keep it very simple, and concentrate predominantly on what has been proven in the laboratory results, e.g. by the startling findings of Professor Citovsky.

If 100% of the Morgellons biopsy samples contain agrobacteria, and if he has indicated that these patients need treatment for their lesions, and has also indicated that this is the first time this infection has been found within human tissue, then it would naturally flow from this that other Morgellons patients have a right to be screened in the same way so that the need for treatment may be initiated.

If a person who has Morgellons disease requests this specific test and treatment, but is then subject to refusal or unconscionable delay, (by those with a duty of care), they may have a case in negligence if further harm results as a direct consequence of this refusal.

Who would have the duty of care? Professor Citovsky only has the duty of care to those whose biopsy samples he tested, and this would be excecuted by his contacting the physician who requested the testing, and certainly by very generously putting the facts in the public domain.

Would a physician have the required duty of care? Perhaps, if he had actually diagnosed his patient as suffering from Morgellons disease, (although he may already have prescribed a regimen of antibiotics that may treat agrobacterial infections). Whether further biopsies should be done (to screen for this infection by PCR) may be a matter of clinical judgement.

You also said:

‘concerning any type of newly emerging sickness or malady?’

This is perhaps the legal crux of the matter. Who might have the legal duty of care in these circumstances? If the CDC have undertaken to investigate Morgellons disease, they do have a duty to do this in a competent fashion. Any doctor advising the CDC in this may not have been appraised of Professor Citovsky’s finding. Case law (upon which future cases is predicated) allows for physicians not to know about small print findings, under certain circumstances, and thus not to be found negligent.

The answer is very simple. Write about Professor Citovsky’s findings, to the CDC, and to your Senators, (I believe that one lady was especially helpful in the past), and set out your case, against the backdrop of legal negligence.

All you are asking for is to be screened, and, if necessary, (i.e. if you receive a positive result), to be treated for the agrobacterium infection.

If enough of you write you will surely receive something in the way of action.

You could consider asking an attorney if the ‘but for’ clause would apply in any action in negligence. I think that this is what you are getting at when you said that a group:

‘that has or had been active in and/or successful, in their attempts to deter or incorrectly influence any decisions of, or in the determination of whether or not an investigation or research was needed’.

We are not at that stage, and I hope that it will not arise. You have to write the letters, and await the replies. If there is a refusal to screen, (or at least treat clinically), that would be very surprising, and you could well have grounds for legal action.

The same would apply to the right to be screened and treated (if appropriate) for Lyme disease, (although I do not think that any scientist has found a 100% correlation between this and Morgellons disease).

The whole thing is so huge, you really have to proceed through it piece by piece.

Have you considered involving the mass media?
#96 Smileykins
June 7, 2007

Ursula said:

I should say that this is a common error, and it seems to be what Smileykins is doing. I am afraid that her legal analysis, from premiss to conclusion, is incorrect.

Ursula, you’ve made a conscious decision to step into the topic of “morgellons disease” with a lack awareness, concerning a whole lot of things.

Knowing that Southcity has created a history between us (that you know nothing about, too), I had reasons for addressing him as I did.

I’ll admit, that:
a.) given the situation concerning this whole “morgellons disease” phenomenon
and:
b.) since it has happened before, and isn’t that unusual

I’ve wondered if you were a multiple of Southcity’s personality.

If not, I apologize for wondering, but I think it’s best to be open about things, so I needed to get that off my chest.

Since you’re compelled to jump in and speak on things you don’t have a solid background on, I think you should know that it’s resulted in him having told other members of the “morgellons disease” community that you, Ursula, are a “MEDICAL/HEALTHCARE ATTORNEY” that he’s consulted for “legal recourse concerning all posters at morgellonswatch”.

There is a culmination of trouble that has recently taken place within their community, and outside of it, stemming from thoughts that he and a particular other fellow patient have shared with each other in past comments on a message board they frequent. His fellow “morgellons disease” patient/friend is unaware of any wrongdoings, although South has tried to allude to it.

They really don’t need another confused person playing around and pretending with them, like you are.
#97 Smileykins
June 7, 2007

I’m sorry, I need to clarify that I wasn’t meaning to imply that Southcity has said, or given me any reason, whatsoever, to think that he is anyone other than who he posts as. I wasn’t inferring that he has multiples, but I have witnessed that, with one of the “morgellons disease” patients even describing that her different personalities say what she is unable to, herself. I apologize for not making that as clear as I needed to.
#98 Smileykins
June 7, 2007

Actually, it could be, now that I think about it, that what Southcity has done with you, Ursula, is the same thing he’s done with someone else who seems eerily like you, in so many ways. A lot of the patients follow him, after being told he’s a scientist. Except, that person works at getting them all to believe that, and you’ve had this medical/healthcare attorney title unknowingly, and unwittingly, assigned to you. Oh, well. Take care.
#99 Sabrina
June 8, 2007

Dear Ursula,

Thank you very much for taking the time to post everything that you have. Your comments are refreshing and I have missed this type of objective opinion since it has been so long since I have seen it.

I would like you to know that I have carefully given your comments a great deal of thought and I agree with many points that you have touched on. Especially in regard to the scientist from the Netherlands, he is indeed a history maker and I have no doubt that he will be remembered as such in many professional circles for a long time to come.

I also want you to know that I plan to write more letters because I agree that this is a crucial step in the process to begin to recieve proper care and treatment when it comes to this clinical condition.

Looking forward to your future comments!

Peace,
Sabrina
#100 Smileykins
June 8, 2007

Ursula,

Are you Tam-tam?

Smileykins
#101 Tara C. Smith
June 8, 2007

NOTE: if you’re just going to post insults, don’t bother.

Thanks,

Tara
#102 Danser
June 9, 2007

Dr. James Matthews, MD Endorses NutraSilver as an “Effective Therapy” for Some Morgellons Symptoms
Written by James Matthews, M.D.
Wednesday, 18 April 2007

Disclaimer: This information is being shared for educational purposes only, and is not intended to replace a proper consult with your physician for healthcare. No one should practice medicine on themselves or others without a license.

Dear Morgellons Community Members,

I have some preliminary data indicating that NutraSilver is an effective therapy for some of the symptoms, in some of the patients, suffering with Morgellons Syndrome, and after new drug applications have been filed, endorse trials of its use for this mysterious condition.

About 2.5 years ago, I met my first Morgellons patient and three months later, I became a patient myself.

I sorted through all available data, what little there was, and came upon the link with Lyme disease made by William T. Harvey, M.D., M.P.H..

I used almost every available method of Advanced Western Medicine over a period of two years, including variations on: the Burrascano protocol; Shoemaker Biotoxin-binding protocol; Marshall protocol; Sherry Roger’s detoxification protocols; a host of anti-parasitic medications; UV; Infrared; Saunas; Salt and C; Diatomaceous Earth; many immune boosters; regular Bikram, Dahn and Iyengar Yoga, and after all this, felt “ok”, and had been off of all prescription medications for about six months.

Then, about four weeks ago, I heard about NutraSilver and chose to try some personally.

Now, most people recognize that precipitation of a Herxheimer Reaction is a good indicator that your therapy is effective. In my case, I had precipitated these gently, and detoxified many, many times, and believed there was very little infection left in my body to cause a Herx. This turned out not to be the case. A unique, deep tissue Herx occurred which gave way to greater feelings of well being and physical health than I had previously experienced with any other method.

I recognized the potential value of this new therapy and immediately gave my two sickest patients my remaining samples.

In one of the patients, who had no lesions and had already been treated for about 1 year with my integrated protocol (above), we observed only slight improvement in his symptoms of creepy crawly and prickly sensations.

In the second patient, who had only just begun my protocol, and had been suffering with multiple bodily and facial lesions, the results were dramatic. Within days his skin started clearing. He declared he felt “very good”, with improved mental processes and mood, and increased energy.

NutraSilver is a special suspension of Ionized, Colloidal Silver in distilled water. The suspension is created through a unique proprietary process where water is negatively charged and clustered so that the silver is well suspended, and theoretically better absorbed. Colloidal Silver has a long history of use as an antimicrobial agent, and there are studies showing that NutraSilver kills multiple pathogens in culture very effectively as well. I’m not aware of any toxicities with any, silver products, and the only significant side effect ever documented is argyria. This is an irreversible condition of grayish coloring of the skin that seems to occur when too much of the wrong kind silver is ingested. Best estimates indicate that a healthy 70 Kg person would need to ingest about 10 grams of Silver to be at risk for this condition. By contrast, 1 drop of NutraSilver contains only 0.090mg of Silver. In other words, a person would need to ingest over 100,000 drops of NutraSilver to even theoretically approach the risk for argyria. This may be why there has never been a single case of argyria documented with NutraSilver. Further, I’ve seen a study showing that properly prepared Colloidal Silver taken for two months is purged from the body at the same rate at which it is consumed. And, half of the remaining silver was purged within one month of stopping consumption. Taken together, this data suggests to me that the risk of argyria from NutraSilver is probably somewhere between extremely low and insignificant.

Before considering use of NutraSilver with your personal physician though, everyone needs to know that in 1999, the FDA had declared in a “Final Rule” that, “all over-the-counter (OTC) drug products containing colloidal silver or silver salts are not recognized as safe and effective and are misbranded.” Ultimately, the FDA is the authority in this area, and this letter is in no way meant to undermine their authority.

On the other hand, we’re dealing with a special situation here. To begin with, Morgellons wasn’t widely known in 1999 when the FDA ruling was made, and even today, the CDC hasn’t recognized Morgellons as a disease. Further, many people in the community are suffering so much that they may feel, after consultation with their personal physicians, that given how some have benefited, a trial of NutraSilver may be worth the tiny risk of argyria. Given how some are suffering, I can even imagine people feeling that trading Morgellons’ lesions for argyria quite fair, and agreeable.

The choice to try it or not, is a very personal one, where each individual must consider: their degree of suffering; other options; costs; risks; the FDA’s ruling; and most importantly, the recommendations of their personal physician. Further, I now know that at present, NutraSilver is classified as a nutritional supplement and can’t officially be used for any diseases, symptoms, or relief, only water purification. So, any individual who chooses to use it off-label, does so, AT THEIR OWN RISK.

After consulting with their own personal physician, if anyone does choose to use NutraSilver for Morgellons, please let us know how it goes. We hope to compile data about any possible risks, and benefits, and use this information in a “New drug” application to the FDA for clinical trials.

Standing together now, we will find answers, and we will begin to offer more relief for those suffering.

Conflicts of Interest: A small percentage from the sales of NutraSilver is paid to Advanced Medicine, L.L.C., a new nonprofit company that I direct. 100% of the monies received go directly back into the support of clinical and scientific research in Morgellons. Using this method of funding, I hope to raise more money for Morgellons research within the next year, than all of the other organizations, in all of the previous years put together.

I will be available to answer some questions on the Morgellons Hope Community Forum.

Sincerely,

James Matthews, M.D.
#103 Ursula
June 11, 2007

Dear All,

Here we have another wonderful doctor, (James Matthews, M.D.), who is trying his level best to help assuage the terrible suffering that is taking place.

I am who I am, and will do anything in my power to help. I cannot give individual legal advice about any specific case, as you would require to consult your own attorney for that.

In some respects, healthcare law is very simple, as I have outlined in my hypothetical answer to the hypothetical question posed by South City.

The Right to be Assessed.

Even the dermatologists who are unsure about the veracity of Morgellons disease being a de novo clinical condition state that it is crucial that the presenting patient is afforded a thorough medical examination.

Inappropriate vis-a-vis Appropriate Tests.

However, it is apparent that many of the clinical laboratory tests currently in use will not detect this condition.

Therefore, it is surely important that the appropriate tests, (principally the PCR screening for the presence of agrobacterium infection), are carried out.

Is Appropriate Testing Important?

Yes, in fact it is crucial, because specific treatment is necessary for an infected individual.

It is also very important because the number of people who think that they may have Morgellons disease is apparently increasing.

There is therefore a strong public interest in ensuring that further research is done by scientific experts such as Professor Citovsky.

The Way Forward.

It is uterly shameful that the groundswell of action in investigating this condition has had to come from people who are sick.

However, if this is the way it has to be, then so be it. This is no time to sit back, or to be ‘fatalistic’, e.g. accepting that a cure may not be found in your lifetime.

I know that many of you feel absolutely rotten, and that a lot of people (even health professionals) just do not understand.

I also realise that you are at times subject to cruel jeering and miscalling for absolutely no reason other than you go on line to explain how ill you feel.

Now, you may well be suffering terrible cognitive dysfunction (brain fog), and you might also be experiencing sharp pain, in addition to extreme bladder and bowel disruption.

You might have even more distressing symptoms, (the clinical features of this condition are a lot worse than is generally described, I think), but (if you have no objection to this activity), you should consider writing a brief letter, or perhaps signing one of the petitions to the appropriate authorities.

I think that you should keep your letters brief and above all clear and ‘measurable’. State the testing that you wish to be done, why you want this, and when you want it carried out.

I do wish all of you the best, and, as the doctor stated supra, together you will stand strong. You are not alone, irrespective of how things may seem at the moment.
#104 Ursula
June 11, 2007

Dear Sabrina,

Thank you very much. Please be assured that I will always do all that I can to help, as will the many healthcare professionals and scientists who do believe that some people are indeed suffering from this dreadful condition.
#105 southcity
June 11, 2007

Thank you once again Ursula. As well as Dr. Mathews, Sabrina and everyone one else who has proactively contributed to this discussion.

Once again smiley, your beliefs have led to your making of claims based only on assumptions. My question to Ursula was theoretical. Granted, I did have your group in mind when I proposed this question, and based on her reply, it would seem you have gained much to be concerned about and/or expect at sometime in the future. Your efforts will not be forgotten by many and all actions have consequences….

But, as I said, this question I had asked could also pertain to myself, and in no way have I claimed to have secured counsel from Ursula in regards to any specific issue.

You have lost all credibility because of your antagonist nature and one is truly baffled in regards to your drive and motivations in this matter. Not to mention the underhanded, sneaky, dishonorable manipulation of others words or thoughts. You have proven yourself to be a truly rotten person and have worked very hard to stall and discredit this issue and stalled investigation. you should be aware that every comment you make will become subject to much further scrutiny..

I do not know what type of legal capacity Ursula is active as, but it is clear she understands health law, and those infected by this agent can only hope that in any necessary litigation, their legal rep is as knowledgable.
#106 Ursula
June 12, 2007

Hi South city,

Thank you for your thoughtful reply.

The journey through this terrible illness must, at times, seem unending. However, I think that certain things have been achieved, and other things will be, provided everyone keeps up the effort.

It seems to me that there are two possible goals. One is to be diagnosed and treated. The other is concerned with possible litigation.

It is very important to be diagnosed and treated by a physician who understands what is wrong with you.

The more physicians who understand that this could be a new disease, the better.

This is why it is important to build on the startling findings of Professor Citovsky.
#107 Smileykins
June 14, 2007

South,

I’m not possessed of the illness that such people as you are, and I can’t play this internet game with you. Even minor exchanges of honest communication has never been forthcoming from those involved, and that’s what it all boils down to, for me, and I don’t mean to “insult” anyone. I happen to think it is extremely dangerous to entertain delusions, but carry on.
#108 Ursula
June 19, 2007

Some people who think that they may have Morgellons disease may not have this. They may have another medical disorder altogether. Some patients may eventually, (but only after all of the proper tests have been carried out), by the process of exclusion, be diagnosed as delusional.

This does not mean that Morgellons disease, or the NCS, does not exist.

If a dermatologist sincerely thinks that a patient is delusional, it is highly arguable that telling them they do have ‘Morgellons disease’ is ‘rapport enhancing’.

From an ethical perspective, the physician may argue that he is being ‘beneficent’.

However, from a legal perspective, he would be better to accord the autonomy of the patient greater credence than beneficence.

The ethical principle of beneficence, if regarded as ‘trumps’, degenerates too easily into ill fated paternalism.

It is not good ethics to tell patients ‘therapeutic lies’.

It is most certainly not good law either.

This is a fortiori the case when findings such as those shared by Professor Citovsky are placed in the public domain.

The medico-legal duty is to see that these are replicated, and the affected patients are treated, and that those governing matters concerning public health are swiftly informed.
#109 melissaj
June 19, 2007

I haven’t read this entire thread, but I will tell you a Reader’s Digest version of my story.

I NEVER heard of this mysterious bug/biting disease. I don’t watch TV and I am very busy with single motherhood. I have nothing to gain from this disease and everything to lose.

I went to dad’s in rural NY for 3 wks (12/18/06-1/7/07. I came out of the shower at dad’s on 1/6 and told him that I needed to go to the ER. My face and hair felt on fire. I traveled home to NY the next day with my 5 and 6 y/0 and spent several weeks trying to figure out what was wrong. I spent thousands of dollars and lost over 30 lbs in a month.

I received lab results back from IGeneX which stated that I had Borrelia bacteria. My previous lab results were up and down and all over the place. I had never been sick previously (I didn’t even have an MD here in FL!)

All I can say is that i would rather have almost anything else in the world. It was a nightmare. I am on a few antibiotics for 3 mths now and have regained most of my former life back.

Don’t say no until you experience it. I would have been skeptical myself, but I have it and know it is real ….whatever it is and whatever you want to call it!!
#110 Smileykins
June 20, 2007

Concerning Ursula’s remark, “It is not good ethics to tell patients ‘therapeutic lies’”. That is very true, but since this is such a difficult to treat condition, I suppose that it may even be possible ( rather than just a case of some “morgellons disease” patients making it up, and passing the word along), that the origin of the source of such inaccurate information, concerning the drug, pimozide, may have even begun with a doctor trying to help someone.
#111 Ursula
June 21, 2007

We are a long way past the point where this condition may only be diagnosed clinically, that is, based solely upon the physician’s clinical acumen.

It is no longer a matter of conjecture whether the patient’s account of clinical symptoms have any basis in truth, or if their non-healing lesions are probably self-inflicted.

The objective clinical laboratory tests are what proves otherwise.

It is most assuredly abnormal to find, as Professor Citovsky has done, the agrobacterium species infecting human tissue.

I fail to see what clinical benefit would be accorded to the patient who is so infected by the prescription of Orap (pimozide).

This is not, insofar as I am aware, recognised anywhere as the treatment for agrobacterial infections.

Therefore, it is most definitely bad ethics and (much more importantly, for all parties concerned), most ungainsayingly heinous law to come over all ‘rapport enhancing’ and tell the patient they have Morgellons disease, yet prescribe for them the medication reserved for psychosis in humans and worms in pigs.

This is a line of therapeutic approach that must be questioned now that the need for screening, and appropriate treatment where a positive result is obtained, has been exemplified by Professor Citovsky.

According to the medical experts who do understand Morgellons disease, the sooner the correct treatment is instituted, the better the chance there is of obtaining a favourable clinical response.
#112 Ursula
June 21, 2007

Dear Melissa,

I am sorry to hear of your illness, and hope that you are feeling a bit better. Would you please explain (only if you wish to) what you mean about your lab results being up and down?

What antibiotics were you prescribed, and were these predominantly for the Borrelia infection?

Do you think that you have the clinical features that are consistent with Morgellons disease, or do you think that you ‘only’ have Lyme disease? (I know that the latter is also very debilitating in its own right).

Do you think that you caught this infection in New York, or perhaps earlier, in Florida?

Please see the writings of Cliff Mickelson, as you might then have a clearer picture of the various ‘forms’ of the ‘borg’ that he, with scientific help, has identified. Also, do you in any way recognise what he refers to as the ‘callus’?

You do not have to answer, but it might help you to read the above, and decide for yourself whether you should see an MD who does see patients who think that they may have this disease.

Best wishes to you and your children, and your father.
#113 cooler
June 21, 2007

most cases of cfs/ fibro are caused by the novel strain of mycoplasma. Dr. shyh ching lo from the armed forces injected it in animals and they all died. He folfilled kochs postulates Looking for antibodies is pointless for the animals that died showed weak antibody response, pcr tests must be used.

Read the book www. projectdaylily.com to find out more. They are several peer reveiwed papers on mycoplasma incognitus by lo and nicolson, find them on pubmed.
#114 Ursula
June 22, 2007

Another Step in the Right Direction.

The CDC has now inserted a page on Morgellons disease on their website.

This has led to many sufferers expressing joy, but I wonder if this baby step could be transformed into a giant leap, so as to free the unjustly suffering from the bondage of decay, and thus bring them into the wonderful light of recognition, diagnosis, treatment and restoration to as full a healthy state as possible?

I do not describe the CDC’s action as a ‘baby step’ to discourage anyone.

In many respects this is an important sea change, as was the recent removal of the reference to delusional parasitosis from the infectious disease section.

What I do not think you should tolerate for a nanosecond is the invitation to submit electronic communications that will not necessarily receive individual answers, but which may be dealt with under their ‘frequently answered questions’ section at some point.

If you really do believe that you are genuinely suffering from this horrible condition, you should assert your right to receive swift pcr screening for the agrobacterium infection that may be in your lesions, basing your claim on the findings of Professor Citovsky.

You have a right to request this, and to receive a personal reply, because Professor Citovsky has stated that treatment is required in positive cases.

I would say that this is a fortiori the case if you have any related problems of an ocular nature, as your eyesight is far too precious for you to tolerate anything in the nature of a frivolous or vexatious delay.

This is not a trivial problem, so I do not see why you should have to tolerate others setting the timescale towards full assessment, diagnosis and treatment.

I am not giving individual legal advice, but you could certainly consider going to see your private attorney about any unconscionable delays in receiving appropriate screening and treatment

Re Recent Questions on Libel.

You do not have to put up with receiving insults either. Tara did the correct legal thing stopping these before they got as bad as on other sites.

Do not be sidetracked by those who have seemed (on other sites) apparently to derive vicarious pleasure from taunting the sick, including sneering at parents who are going out of their minds because their children are crying with severe pain.

Hypothetical Clarification on Libel.

If a well known person identifiably speaks on a site, simply stating that she is being investigated for a (potentially very) serious condition, and is then called ‘a nut-case’, there could be grounds for legal action, identification of the prolific libeller, and 3rd party liability against the person ‘managing’ the site.

This is particularly so if such prolific libel has proceeded and is proceeding in an unchecked manner, in which the (particularly identifiable)sick are subjected to such insults as ‘nut job’ ‘liar’ and other such epithets.

I am glad that Tara does not allow this rank behaviour. You do not have to be an attorney to know that it is wrong, and that those managing other sites should do something about it.
#115 Smileykins
June 22, 2007

Southcity is ill, and he’d told people that you are a medical/healthcare attorney, Ursula, and that he consulted you over legal recourse concerning some misunderstandings he has. Why does that seem to not matter to you, in the least? Also, please explain only one other simple matter…how you arrived at the conclusion that pimozide has antihelminth properties.
#116 south
June 23, 2007

In Ursula’s comment prior to yours smiley, I did not count a single instance of myself being mentioned. And in no way do I get the impression that her words were directed at, nor about me in particular. I am only one of many you have offended… And in no way should you consider only myself when worrying about any legal actions that may be brought against you.

I can guarantee you that you have made many incorrect assumptions, and your beliefs are seriously flawed. Remember, timing is everything, and patience is a virtue.

I may have a physical illness, but I am not qualified to ascertain what has driven your antagonistic nature that you have displayed for quite a long time.

I am sorry if you are losing sleep worrying about your words and actions, but they are yours. Own them, and then perhaps you can make a change and perhaps use your drive and motivation in a helpful, productive, positive way. Until then, I have nothing further to say to you.

Be well, enjoy your health, and do the right thing in all that you do.

Southcity
#117 Roberta
June 23, 2007

The tactics of “MorgellonsWatch” are indescribably vicious.
Michael, the owner of MorgellonsWatch has sent many people email viruses when they have disagreed with them via email. I, and some others are afraid to open emails from people that we don’t know who they are, even though they may actually be trying or wanting to help.

Here are some of their tactics, http://morgellonsusa.com/Pg16.html

Which is why Professor Randy Wymore at “Oklahoma State” issued these 2 Files to be placed upon 3 Morgellons Websites, i.e. MorgellonsUSA, Morgellons.org, and the NMO

Michael the owner refuses to identify who he actually is, other than that he is a computer engineer from the Los Angeles area. The other two are furious, and Rick Grove deceitfully sent two threatening emails to MorgellonsUSA as you can read about at the above link.

Here’s the Links to the Professor and OSU’s Statements:

http://morgellonsusa.com/files/Wymore-statement-2-19-07.pdf

http://morgellonsusa.com/files/vision_statement.pdf

All the help that “Morgellons Sufferers” can get would be greatly appreciated.

Sincerely,
Roberta Contreras
#118 Smileykins
June 24, 2007

When Ursula returns, she’ll clear up the misunderstandings I addressed to her, South . I’m very sorry that “morgellons disease” patients can’t understand what lies are, and that they have no effect on anyone who is clear on the truth, but that is a simple fact of life.
#119 Ursual
June 25, 2007

The Law Governing Internet Libel.

What a lot of people do not seem to understand is that making an inaccurate and insulting statement on an internet site is not the same as saying something of a potentially slanderous nature, nor is it even the same as writing such a thing in a letter.

Making such a statement on an internet site is legally not dissimilar to publication. The fact is that the insult is there, open to all eyes, for (virtually) forever.

If the insult is against an instantly identifiable person, the legal position of the alleged libeller is not good.

If the insults and libellous remarks are continually repeated by the same alleged libeller, and the ‘manager’ of the site has never taken the steps required (in law) to deal with these, their legal position is not at all good, (although the liability placed on the latter is, in such circumstances as described, usually of a 3rd party nature).

Is it possible to take such a case to the courts? Broadly speaking, yes. Can Court Orders be obtained so as to ascertain the identities and other electronic information held about the alleged libeller? Broadly speaking, yes.

If an alleged libeller, or their alleged liable 3rd party counterpart, knows that the above is the law, their position is worse, (although the over arching principle of ignorantia iuris neminem excusat must not be forgotten, particularly when matters of legislation, as opposed to common law, are concerned).

The above is a summary of the applicable law, stated in very broad terms.

As I have repeatedly said, I am not giving individual legal advice.

Individuals seeking this must consult their private attorney, as everything rests on the merits and possible demerits of the individual case, and the actual jurisdiction concerned.

I can assure you that everything I write, whether the subject matter be the law, or the pharmacokinetics of drugs, is posted only after I have checked out the relevant literature, or have asked the counsel of an appropriate expert in the field.

Such counsel has assured me that I may of course outline matters of applicable law in such a broad manner, particularly when such care is taken re the veracity of the statements made, and especially when I am helping people who are subjected to unhelpful personal comments when all that they are guilty of is being sick.

What I am advised not to do is request or accept anything in the manner of monetary recompense for this, a piece of advice given only for the sake of ‘completeness’.

There will never be any question of this, of course.

If South city or any other good person wishes to ask me to outline the applicable law in a broad or hypothetical fashion, I am only too pleased to help, just as I am only too happy to ensure that these poor people get the medical help that they surely sorely need and deserve.

Such broad outlining of the applicable law is not as good as that which a person might receive from their own private attorney, but I think it must be better than nothing.

Healthcare law is not simple, and it has its own language, which, together, might make a person feel all at sea.

The biomedical sciences are even more complex, so it is expecting too much of people, especially when they are sick, to circumnavigate all of this, and ultimately to achieve resolution.

However, people are increasingly trying to help, and, remember, together we can do it.

Best wishes to all.
#120 Smileykins
June 25, 2007

Very well, Ursula. But, you had said that you’d only heard about this phenomenon recently, and that you don’t think you’re afflicted by it.

With all due respect, you appear to consider yourself firmly grounded in a position of authority to be of assistance to patients who do think that they have “morgellons disease”. It was very kind of that special someone who’d told you to not charge, or accept, any money from patients.

So, at least, for the sake of the people you’re ensuring help to, you can surely cite the exact source from which you derived your information on pimozide’s anti-helminth properties.

Thanks, Smileykins
#121 southcity
June 25, 2007

Now, on to more important things.

Ursula, I have another hypothetical question, if you don’t mind. But, before that, I would like to know if, either publically or privately, can you give referrals to the correct type of health law professionals? what is needed is a firm willing and able to take on what will become one of the biggest, most talked about case of our time, and to do so pro bono? There is considerably much more information which has not been shared publicly, which would be more appropriately disclosed in court.
Anyway, I have had a tough time in finding a law firm that can grasp the enourmity of what all this appears to represent. Also, in answer to your question about involving the mass media, yes, this has been an important goal from day one in my involvement with PerDaniel. This has been very difficult, to say the least, and has been a disappointment in by my learning thing that things are not quite as democratic as I had believed them to be.

The politics around this illness are overwhelming, hence the need in requesting a court ordered inquiry concerning(….) and court oversight of this inquiry.

if you can offer any advice, it would be respected completely.

Thank you one again,

Southcity

P.S.
Relax smiley, as far as I know, this has nothing to do with you. Or does it?
#122 Smileykins
June 26, 2007

But, on April 13th, Ursula named a doctor whom she said actually transferred psychiatric in-patients to his care. I’d requested the source of her allegation, but only received an unsatisfactory remark, on May 8th, that anyone can read his online publications and see that it was done.

Since I’d kept abreast of that doctor’s publications, and not recalled seeing that, I’d only wanted Ursula to hook me up. In the same comments from May 8th, she’d said, “as we all know”, and went on to say some erroneous things about pimozide.

Citing sources of information isn’t hard. I’ve known where most of what Ursula’s opinions on “morgellons disease” are from, and she’d said, admittedly, that she had only heard of it recently.

I didn’t press the first question I’d asked her, Southcity, but the one I repeated about pimozide isn’t tough to answer. Ursula said that she checks out relevant literature, or asks the counsel of an appropriate expert in the field about such things before she posts.

“Morgellons disease” is something society has been made aware of, and, it is everybody’s business.
#123 Ursula
June 26, 2007

Hi All,

Please be most assured that I would not post information as ‘fact’ if I was in the least unsure of my ground.

Now, Dr Amin most assuredly does write that patients required to be transferred to the parasitology clinic in Arizona, and that they were previously, alas erroneously, admitted to psychiatric facilities with the (wrong) diagnosis of, for the most part, delusional parasitosis.

Dr Amin does not just briefly mention this fact. He elaborates on it, and asks his professional colleagues to consider the possibility that certain patients may be suffering from what he refers to as a new clinical syndrome, viz. Neuro Cutaneous Syndrome, (NCS).

He discusses, at quite some length, and in more than one article on the subject, how devastating for the person’s self-esteem it is to receive a psychiatric diagnosis of this type, particularly when they are so unwell because of the parasites actually breeding on their scalps.

I am equally certain about the actions of Orap (pimozide). As a matter of fact, more than one class of drug, used within psychiatry, has anti-parasitic actions in addition to neuroleptic ones.

As I say, I am absolutely certain of these facts. Either take my word for it, or do the requisite searches on google.

I am not going to waste time ‘proving’ everything I say, when there are much more important matters to discuss.

I will repeat what I have already said.

This purportedly new clinical syndrome, irrespective of whether we name it Morgellons Fiber disease, or NCS, is something that everyone has only recently heard of. In the grand scheme of things, it is a recent epiphenomenon.
#124 Ursula
June 26, 2007

Hi South City,

Re the Hypothetical Question.

I don’t think that you would be able to convince the legal profession about this if you relate the absolute enormity of it all. It is too big,and it is a lot to expect of a lawyer to take it all in.

If you wish to invoke the law, you have to think like a lawyer. Deliver the facts piece by piece, concentrating on what has already been demonstrated by science.

The same approach would apply to the media.

You also need doctors and scientists who would be willing to act as expert witnesses.

Once a top firm really believes the science, I think that they would be willing to act, at least in principle.

Some lawyers have internet sites, and declare an interest in this disease.
#125 Ursula
June 26, 2007

Hi South City,

Re the Hypothetical Question.

I thought I would clarify things a little more. I do not know which firm of attorneys would be best, but you could google terms such as pro bono attorneys and healthcare or medical negligence, citing your geographical area.

Then you would have an idea of what is on offer, although you might wish to think about things before making any binding commitment to a particular firm.

You could also google re the individual attorneys who have an interest in this disease. This interest may not extend to them being willing or able to help you in the courts. Some of these professionals are just newly qualified, I think.

You are the one who has to make the decision, and it is all very difficult.

You might consider writing to the CDC, asserting your right to be screened for the agrobacterium infection, based on the grounds stated in the above posts.

You could say something about the further research that is required into this.

You have not been refused the screening at this point, and indeed may not be.

I would make this a polite, but firm, request. If you are also thinking of contacting anyone else, (e.g. a Senator), about this screening issue, it would probably be best if you let both parties know.

Another possible issue is nanobiotechnology, and the laboratory results obtained by Dr Hilde Staninger, and Dr Spencer. I believe the former is having work published in the Pathology Journal, and the latter is campaigning for restrictions in this rapidly expanding field of science.

If nano machines are targeting certain people, and are partly responsible for this disease, this could be viewed as assault, not negligence.

The authors mentioned are highly respected, and if the material is indeed going to be published in the Pathology journal, the whole thing looks less like science fiction and a lot more like scientific fact.

Any case that you may hope to build must, I think, proceed like this. You really do need to produce the scientific facts, piece by piece. Everything that you assert has to be substantiated by illustrious professional scientists or doctors, such as the professionals just mentioned, and of course, Professor Citovsky.

I think that any case of this nature will have to be as academically ‘tight’ as this, and every paragraph will have to have a strong scientific foundation, preferably backed up by peer reviewed publication.
#126 Roberta
June 26, 2007

Smileyskins, aka Mary Barr, as well as TallCotton Rick Barr, the boyfriend spend their lives attacking EVERY Scientist, Researcher, Doctor, Disease Specialist, Patient, Sufferer, ANYBODY who is sick or helps, with this disease called “Morgellons”

Here are some of their threatenings, intimidations and tactics to undermine this Physical Disease, http://morgellonsusa.com/Pg16.html

Based one these things which the Professor saw and observed with his own eyes, is why Professor Randy Wymore at “Oklahoma State” issued these 2 Files to be placed upon 3 Morgellons Websites, i.e. MorgellonsUSA, Morgellons.org, and the NMO
#127 Ursula
June 26, 2007

Dear Roberta,

I am sorry if you have been personally hurt by any of the comments that may have been posted on other sites, and I am also sorry if others have been hurt too.

My advice is to say absolutely nothing about this on any site from now on, (apart from passing this advice on to friends on appropriate sites).

Do not enter into any discussion, do not answer, do not try to reason. Do not refer to any of the posters by name, directly or indirectly, even if you wish to clarify a given point.

Naturally, you may read what is written, and, if you or any other person is referred to identifiably and pejoratively, you have every right to keep your own copy.

Naturally, you have every right to keep your own copies of inaccurate, pejorative and insulting things that have been stated about you in the past too.

It is a good idea to follow this advice, but all I can ask you to do is to be good enough to pass it on, and request that the others follow suit.

Feel the power of the dignified silence!

Furthermore, we have a whole lot of much more important things to concentrate on at the moment.

I think it is a general truism that working parties tend to go as slow as they are allowed to, but they will also go as quickly as they feel they have to.

This is why we have to follow the advice posted on morgellons hope, re asking senators etc. why there is nothing, even in the region of intermediate specific treatment advice, for the medical profession as yet.

Together we can do it, so please do not allow yourselves to be sidetracked by nonsense that will, in the very near future, be all in the past.
#128 Timothy Simmons
June 26, 2007

Thank you Ursula,

I appreciate your advice, and your firm conviction that these things will soon be as you state, “In the past”

Timothy
#129 Smileykins
June 27, 2007

Pretending something doesn’t exist, doesn’t make it go away…

From the “morgellons disease case definition”:

6. Cognitive dysfunction, includes frontal lobe processing signs interfering with logical thinking as well as short-term memory and attention deficit. All are measurable by Standard Psychometric Test batteries.

7. Emotional effects are present in most patients. Character typically includes loss or limitation of boundary control (as in bipolar illness) and intermittent obsessional state. Degree varies greatly from virtually absent to seriously life altering.

Noteworthy is the newfound strong possibility that emotional presentation does not precede “cause”, but rather that both emotional and physical effects stem from cytokine effects on neurotransmitter levels and receptor number (Buchsbaum, Schizoph. Bull. 1998)

http://www.morgellons.org/

*That is noteworthy, sure, but not insofar as meaning anything towards proving the existence of “morgellons disease”, whatsoever. There are a lot of mental disorders that are secondary to general medical conditions. Inability to problem solve, and lack of insight into one’s condition, are very compromising states to be in.

http://www.emedicine.com/med/topic3447.htm

In my opinion, what’s noteworthy, is the many ways these vulnerable patients are manipulated, and told by the “experts” — “the professionals associated with morgellons disease”, that they look up to — that they are not delusional, and, that, while they may seem mentally ill, it’s due to the progression of “morgellons disease”. They’re guided farther and farther away from seeking the appropriate health care.

“Frontal lobe processing signs interfering with logical thinking”

They needn’t, and shouldn’t, say anything beyond that, but they do, they have, and they will continue. Please excuse me, but:

Frontal Lobe Syndromes:

http://www.emedicine.com/NEURO/topic436.htm

Pay strict attention to this section:

http://www.emedicine.com/NEURO/topic436.htm#section~treatment

Does everyone who thinks they have “morgellons disease” have the cognitive challenges and behavioral disorders that the Morgellons Disease Research Foundation states? We can’t pick and choose what to believe, when it is all a part of the case definition.
#130 Ursula
June 29, 2007

Hi Timothy,

Thank you.

What you should consider concentrating on is the objective clinical signs, particularly any abnormal laboratory findings that would appear to be peculiar to this purportedly new disease or syndrome.
#131 southcity
June 29, 2007

I can think of only one logical reason why you persist as you do smileykins, please allow me to explain. 1st of all, you state that years ago you believed that you had morgellons, and you were an avid poster on various forums. Now you state that you realized you were delusional and received treatment for your delusions. yet you have not disclosed what that treatment was or consisted of. Neverless, you are now better, or so you claim, thus giving you the authority and motivation you display on every single spot on the web holding discussions about this topic. Your partner also claimed to have morgellons, but now insists it was because of a serious meth addiction, which he claims to have kicked, thus giving him the authority and motivation to remain as vocal for as long as he has. (at least 3 to 4 years now, for both of you) I would think that a ordinary person would simply move on with life after regaining their mental and/or physical health, yet you both continue to be two of the most active people in and around the issue. I believe that “WHY” is a fair question to ask you both. Regardless of how you answer, from all indications, a logical conclusion would be that you are both indeed infected, very likely scared as one can be by what you have both experienced in dealing with this and the frightening implications of what is stated in the silentsuperbug videos and images. All together, these types of things have driven you both into serious denial hence your unshakable, “we refuse to believe or accept this is real” state of mind. all of your efforts witnessed across the net truly reek of denial. Two questions I have for you smiley are: What did you receive to treat your delusions? And are you still being treated for them?

Southcity
#132 southcity
June 29, 2007

Sorry for the duplicate posts. Tara, could you please fix this?

Thank you,
South

[Fixed--TS]
#133 Smileykins
June 30, 2007

Southcity?

1st of all, you state that years ago you believed that you had morgellons, and you were an avid poster on various forums. Now you state that you realized you were delusional and received treatment for your delusions. Neverless, you are now better, or so you claim, thus giving you the authority and motivation you display on every single spot on the web holding discussions about this topic.

I have tried so hard, and in so many ways, but there is no way that I can make you understand that what I have said, and what you think I have said, are not the same thing.
#134 tallcotton
June 30, 2007

Southcity,

You keep asking the same damn question, over and over, and instead of paying attention to the answer we give, you always jump to a false conclusion. If you can’t believe the truth, quit asking questions. Face it, the myth of Morgellons has been busted. It’s bullshit, and if you have any sense, you know that.

Tall Cotton
#135 south
June 30, 2007

Let me just say ‘WoW’. Sorry for my confusion, But then, with vague and ambiguous wording like that..

Let me get this right finally…
Are you saying that you didn’t actually mean what you wrote? or are you implying that I have a reading comprehension deficiency? http://of-morgellons.blogspot.com/

If only your rhetoric had substance with direct answers. The problem I have found in both of your writings, is that you seem unable to engage in a true discussion and you seem to be operating under delusions of grandeur, or maybe possess some sort of a savior complex.

With this in mind, perhaps this time you could just answer my questions.

South
#136 Smileykins
June 30, 2007

Southcity, I don’t feel that another person’s blog is the appropriate place to have a conversation with you over this, again.

In the past, I have apologized to you, as well as to other people who are convinced that they have “morgellons disease”, on the Morgellons Watch blog, when you’ve told us what you’ve derived from our blog accounts (The Lie of Morgellons). I have explained that, while Tallcotton and I summarized our experiences, we’ve fully acknowledged that what we wrote is lengthy, and, apparently, very hard for some “morgellons disease” patients to follow.

I’ve repeatedly suggested, to you, and others, that asking someone to read and translate it could help you. I’ve also repeatedly suggested leaving comments in our comment section, too, and said that we would be more than happy to try, again, helping anyone who wants, so badly, to understand what we’ve said. No takers, though, every time someone tells us what we’ve said.

In short, I didn’t think I had “morgellons disease”, but I’d developed psychosis for a couple of months, fibe years ago. Psychosis is a state that is pretty much the same for we humans, regardless of whether it is triggered from an underlying organic cause, of which there are many, or whether an underlying mental condition progresses into it.

If a general medical condition causes it to develop, treating that underlying condition will alleviate it, as was in my case. If drugs or alcohol are to blame — and South, many prescription drug even have psychosis listed as a side effect — stopping the offending agent will often cause the psychosis to lift.

Untreated psychosis can end up killing people, regardless of what’s caused it to develop.
#137 Smileykins
June 30, 2007

It’s something one knows, and recognizes all too well, when they see others writing about it, South, and sharing experiences causes patients to not only remain trapped inside of it, but it progressively worsens, for everyone involved, as they perpetuate each others fears.
As I’ve said to you before, I’ve complied with your request for answers, again. You can’t address the real simple questions that I have asked, whether you know it, or not. Anxiety seems to be at the root of what you need to treat for, and that is a pretty simple to solve medical issue, as I have told you. Whether you have an underlying health condition causing the symptoms you have, I have no idea, because you’ve always skipped out, when I’ve asked, but your girlfriend does.
#138 Greg
June 30, 2007

Hello Smiley,

Are you saying that the Fibers which are being produced to grow within the tissues in these photos are caused by this Delusion, or that in fact they are the Delusion?
http://morgellonsusa.com/morgellonsusa.html
If this is what you believe, then the problem is in fact, that “you are possessing a mental and psychological deficiency.”

If you were to state that these were carpet fibers growing within the tissues, then I would have to believe that you are in an obvious state of denial.

On the other hand, if you were to say that the Fibers are based upon a real physical disease, but that it is caused by “a combination of diseases” then which combination of diseases causes the fibers to grow? Or, which ONE causes the fibers to grow? Or what is the number of the physical conditions combined, and what are exactly the 2,3,4 or 5 Physical Diseases that when they are combined, would cause and produce the fibers to grow inside of the tissues?

This is the root of the matter as far as I am concerned. I personally do not believe that 3 particular microbes combined together cause the fibers to grow, but rather it would seem that no matter what combinations of physical health impairments and infections that a person would possess, that only ONE type of organism most likely causes the fibers to grow, which has been temporarilly termed “Morgellons” until time that research would give it a scientific name.

I have many photos myself, that I don’t know if some of them are of a black mold, (but they clearly grew in my tissues) because I took them out.

Some of my Fibers appear different, but they are in fact “from my tissues, or my digestive tract” and they’re definately not of a psychological origin, but rather of a physical disease which produces fatigue, and neurological conditions.

I don’t do much examinations with a microscope nowadays, but it has nothing to do with you telling me over a year ago to toss it, and to dispense of all of my filthy, germy samples, (as you would say) but rather I have established and proven that this is not a made up illness, so I don’t need my microscope so much nowadays.

I don’t possess these psychological traits and components that you’re speaking of, and since I am, and have been seeing a group of physicians and specialists nowadays, who all of them know that there is a real physical disease component to this, and they all support my findings, have examined me thouroughly, have seen samples, and have treated me in various ways. NOT ONE of them believes that I am possessed with illnesses of the psyche.

On the other hand, I do know that there are toxins/and or a part if this physical infection that may, and in most cases probably does induce an effect on the brain and on neurotransmitters, of which there are over 2,000 of them.

I am aware that it is very easy for infected individuals to develope various types of phobias, and yes, some of them may be of the CDC, or of the Government, or that you are supported by the FBI, or many people have developed a fear of other people in general. (Yes, this is psychological) But this isn’t something that’s to be used as a tool to dismiss the illness as a whole, would you say?

Also, some of the infected souls have developed brain symptoms that are similar to that of MS, and it has a profound effect upon their speach. I believe that this is one of the reasons that many physicians automatically believe that this person is in fact a drug addict. This is really all too bad, and very, very sad.

Greg
#139 Smileykins
July 1, 2007

Greg, you know that you have hypopituitarism. If you have one fraction of an ounce of any reasoning left (I’ve seen all the various harmful medication experimentations you do), please read everything in the link below, and get your rear end to a legitimate doctor and get the right tests done and get the RIGHT treatment for what you have. You ARE very ill, without question…

http://www.emedicine.com/emerg/topic277.htm

Among other things it causes, one of the complications is susceptibility to infection due to the limited ability of the endocrine system to respond appropriately, which you’d had when you were hospitalized and told that you had…

Pleurodynia

http://www.emedicine.com/MED/topic1845.htm
#140 Greggybooboo
July 1, 2007

Hi Smiley,

There have been some really special and good days lately. My Pituitary adenoma is gone now. After 7 years or so of continually showing up in the MRI’s and having to have it checked once per year, it has disappeared and stayed gone. The last 2 MRI’s (one last month) has shown that it’s gone, seemingly for good. Thanks for your concern.

The reasoning that the Neurologist and my Primary believe that it is gone is due to one or more of the combinations of meds, Albendazole, Diflucan and Septra DS. That’s the only 3 drugs that I noticed a drastic improvement on.

As far as the Pleurodynia was concerned, that specific Doctor was only guessing, because he found that he could come up with no other conclusion. But he acknowledged that it didn’t show up in tests. Actually the pain which I had was more in the lower spleen which is much lower than the pleura. The spleen itself is below the rib cage. http://www.mayoclinic.com/health/enlarged-spleen/DS00871

You know it’s funny that you mention this also, because that particular doctor was convicted last year for a number of sexual assaults on patients. (It seemed that HE in fact was more of a quack, by their fruits you shall know them)

The doctors and specialists of which I use now are in fact some of the very best that a person can obtain. Thank you and kind regards,

Your Greggybooboo
#141 Greggybooboo
July 1, 2007

Hi Smiley,

I had noticed that you failed to answer any of my questions up above your last post. Kind regards,

Your Greggy booboo
#142 Smileykins
July 1, 2007

Geesh. Go weave a basket since you’re so happy existing in that state.
#143 Smileykins
July 1, 2007

I’m sorry about that remark. This phenomenal situation frustrates me, since nobody who thinks they have “morgellons disease” can reason how the circumstances came about. Whatever conditions they listed as previously being diagnosed with (when they registered on the Morgellons Research Foundation site), are directly responsible for their having progressed into the state of deterioration they’re in. When a once practicing physician develops such a compromised state that he’s lost the ability to know better than to say that he diagnosed himself, online, through finding the Morgellons Research Foundation, that (whether directly, or indirectly), helps to further influence many of these people.

It’s real sad, and very obvious, that “morgellons disease” patients haven’t known what to expect from their previously diagnosed conditions. When those conditions progressed into the state which causes “a misinterpretation of their senses”, their overwhelming misinterpretation is all that they can focus on. Many don’t know the side effects of their medications, too, or to report them to doctors, so that changes can be made.

Going to a doctor and only communicating what they’re misinterpreting, has to be dealt with straightforwardly. If a diagnostician tried to explain anything about it, they’d still be stuck there trying to reason with the patient until the end of time. That’s just how it is with such a diagnosis, and understandably so. To recover, one doesn’t evade the issue, but the state that many of these patients are in works on them in such a way that they don’t know that, and believing in “morgellons disease” has made it worse.

Health care requires a full patient history, good communication, and working with one primary care physician. Hopping from one doctor to another, and focusing on the misinterpretations of what’s going on with one’s skin, while leaving out what serious underlying conditions one has (such as MS, since Greg brought it up), is proof of how serious a situation some of these people who think they have “morgellons disease” are in.

They are trapped inside of a living nightmare, totally rendered unable to escape it, due to the serious compromise to their senses. In frustration, they do so many dangerous things that cause them further decline and deterioration. Locating a “doctor” who believes they have an infestation, is all they want, and it’s becoming increasingly easier, as more of them crawl out of the woodwork. Many of these “morgellons disease” patients will never recover. Such doctors may have a place in society insofar as treating factitious disorders, but that is only one facet of “morgellons disease” that really doesn’t bother me that much. The patients who need to have health care advocates and proxies are who concern me, because they really do not understand, and they can not understand, and children and pets under their care are endangered. Kids and animals have no voice. It is so puzzling how patients defend “morgellons disease”, while wanting to be rid of it.
#144 Smileykins
July 1, 2007

Southcity, Greg, Sabrina, Ursula, and anyone else who’s under this belief, do you realize that when the CDC sent letters out to “morgellons disease” patients, directing them to their local health care providers, that by so many patients adamantly refusing their instruction, it is a hindering factor into their investigation into the matter?
#145 south
July 1, 2007

Smiley,

Exactly how is it that you are able to state factually, anything about the CDC investigation? Are you involved in it? Are you a member of the team assembled around it? How in the heck do you know anything about whats happened or not happened with the cdc investigation. We are all ears, explain how you can make such a statement so boldly.
#146 Greggybooboo
July 1, 2007

Mary,

I’m adamantly in love with you my darling. I did follow exactly the footsteps that the CDC asked, I even took their letter to a Dermatologist. He read it, then informed me that I needed to see a Chronic Lyme Disease Specialist. My Insurance refused to send me to one. I contacted the CDC and let them know of the Derm’s Address, phone, name, etc. and that he refused to even look at me, I was in and out in 3 minutes, and he still collected. He informed me that he’d never dealt with the CDC, and doesn’t know how, even though the instructions were in the letter.
Here’s the CDC response:
Thank you for your inquiry with the Centers for Disease Control and Prevention (CDC). I apologize, the CDC is not a regulatory agency and does not have the authority to mandate your physician to send in a specimen. If the physician chooses to send in a specimen, please ask him to contact the CDC to get shipping information.
(Now Read Below This, it was a joke to them)
LaBretta Lanier-Gholston
Project Officer, Public Inquiries
CDC Copier Manager
CDC/OD/OCOO/MASO
404-498-1556
404-929-2781 (fax)
“I’m Just A Nobody Telling Everybody About Somebody Who Can Save ANYBODY!!”
————————

That is the exact email response that I recieved from the CDC, so thank you Mary, but I did follow the instructions.

And what do you know about them, turning the fingers back. Do YOU work for them. You seem to lump everybody under your assumed surmisings, yet you don’t know anything about what people have done.

The latest CDC posting regarding “Morgellons” is only a complaint by them, and nothing more. They are only complaining that “More people have bothered us about a Disease”

Everything else that they say is the exact same things as up to 2 years ago. You have placed yourself into a very bizzare position for “who knows why???” You still didn’t answer ANY of my questions that I asked. It’s all a big jumpy squirmy situation.

8. Amateur debunkers carry no weight in academia and have no relevance in the discussion of Morgellons Disease in the scientific and medical community. An amateurish debunking
approach is often nothing more than a type argumentative arrogance.

Yours truly,
Your Greggybooboo
#147 Greggybooboo
July 2, 2007

Smiley,

Here are some of your exact words from a couple of years ago:

Profuse, profuse sweating. I worked it up, when I could,
exercising in a hot house with the air conditioner off, and by taking steam baths in my shower stall. I got the steam flowing real good by letting the hot water run full blast, and then, I’d turn the water pressure lower and get in there and let the sweat pour. The fibers came flowing out that way. I flushed them out like crazy, and I was Iiterally covered in fuzz and fibers. The fuzz and fibers came gushing out with the sweat that I got generated.

Now sweety pie, this is all way too confusing to me at this time, it’s like whooooaaa, what is she doing now??? Was that the delusion you were under at that time, or was that the truth? I’m really trying to sort through all of this to be able to help you out. I’m deeply concerned about this.

Yours truly,
Your Greggy booboo
#148 Smileykins
July 2, 2007

Southcity, please. I read message boards. When a lot of patients who think they have “morgellons disease” received their letters from the CDC last year, directing them to go to their local health care providers, many had said that they had no absolutely no intentions of doing as the letters instructed. The general consensus was that they’d gone that route, enough times, already. Many of those patients launched right back into writing letters, signing petitions, and making phone calls to the CDC, which is something that seems to have no end. I based my opinion on so many saying that they were going against the direction of the CDC, because, whether it seems right to you, or not, being uncooperative after asking for help isn’t the way to get help. Here, http://www.cdc.gov/unexplaineddermopathy/ the CDC is trying to guide “morgellons disease” patients towards identifying an appropriate local doctor, by directing them to use online physician locators that are established by professional medical societies, such as the American Medical Association or the American Academy of Dermatology. Being so vulnerable places everyone who thinks they have “morgellons disease” at risk of being preyed upon by certain types of “doctors” who have extraordinarily unique skills.
#149 Smileykins
July 2, 2007

I’ve said that I know you’re sick, Greg. Fibers have never scared me, and I’d understood how they’d become entrapped inside of my stratum corneum layers over five years ago. When I’d posted that on lymebusters message board, I did not, yet, really fully appreciate the extent of what was going on with so many people. I have bawled myself silly, many times, since, because I still have a very hard time accepting that people are in such situations as they are.
#150 Greggybooboo
July 2, 2007

But Smiley,

Smiley, (as I place my arm around you) this is the same reason that lost you the “Black Pearl” honey. Now you’ll have to remain on your deserted island all by your loneseome until somebody rescues you, and I don’t want you to end it all. These “Fibers” aren’t entrapped in the tissues from outside sources, “my darling”

Professor Randy Wymore had taken the fiber samples to “Forensics Scientist” Ron Pogue at the Tulsa Police Crime Lab in Oklahoma, who 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 says. He thinks the skeptics are wrong. “This isn’t lint. This is not a commercial fiber. It’s not.” The lab’s director, Mark Boese, says the fibers are “consistent with something that the body may be producing.” He adds,
“These fibers cannot be manmade.

Smiley, you have “Morgellons” honey. Let us help you.

http://morgellonsusa.com/files/vision_statement.pdf
Morgellons is a multi-system disease of unknown etiology
Morgellons disease is discounted by many public health officials and physicians.
Physical and neurological symptoms are often dismissed or ignored.
Sufferers are labeled with delusions of parasites or neurotic excoriations.
OSU-CHS physicians/researchers have physical evidence of Morgellons Disease.
Morgellons is not psychiatric in origin.
Morgellons is an emergent disease.

Look, I’m willing to forget the past if you just let me help you Mary. I know that it’s hard when your “ego” gets burnt, but I’ll try to help you get through it. We can make it together Mary.

Your Greggy booboo
#151 Greggybooboo
July 2, 2007

Smiley,

You had said, “I’d understood how the “Fibers” become entrapped inside of my stratum corneum layers”, and “The fibers came flowing out that way. I flushed them out like crazy, and I was Iiterally covered in fuzz and fibers. The fuzz and fibers came gushing out with the sweat that I got generated.”

This is all too very peculiar. I have never, ever heard from one single “Dermatologist” that such a thing is even possible. Why not twiggs, animal hair, gravel, among other small things that would grow into the skin in this manner?

No Dermatologist would ever admit that this has ever happened to anybody. I could understand that if a person was a recipient of say, roadrash while motorcycling, or say of a non-disintegrating suture material from an operation, that a very small amount would come out of a person years later, but never being literally covered in fuzz and fibers, or flowing and gushing out of the skin.

Yet you say that this is a very normal circumstance, and that it’s well known in the Medical Literature, as well as all Dermatologists know and acknowledge that this happens all of the time. I’ve looked for this phenomenon taking place for over 2 years, and I’ve never been able to find even one Derm who’s seen this transpire or believes that this happens. I couldn’t find it in Medical Journals either.

It happens so much that enourmous amounts absorb into the skin? And that when you take a hot, steamy shower that then all of a sudden they just gush out all over, and flow out of the skin, covering yourself in fuzz and fibers.

Where can I read about this? And what society of Dermatologists knows that this happens normally at any given time?

Your sweety pie,
Greggy booboo
#152 Smileykins
July 3, 2007

Greg, a couple of years ago, when, after being directed from a radio program on “morgellons disease” to go to morgellons.org, which led me onto lymebusters’ forum, I was recounting, in hindsight, the psychotic experience I’d survived three years prior to that. You’d had a regular hissy fit over it, at one point, scolding me over talking like that, saying that doctors might view the message board, and “no wonder they think we’re all nuts”, or something to that effect. I never understood, back then, why, if people wanted to get better, like they all said, nobody acted like it. Just a little later on, you’d posted a topic thread asking if anyone ever had any plant material come out of their skin. Guess who answered you, affirmatively? Me, in detail, because I had experienced it.

I’d never go into a doctor with something like a question as to why my epidermis was holding debris in it, as it is supposed to, as part of its protective properties. You were told, when you’d taken a black light in and showed one of your dermatologists, that what you were seeing was sun damage. Well? What do you expect out of dried out sun damaged skin? There’s not one single person who has the capacity to understand human skin in the entire group of patients who call themselves morgies, and for good reason.

As the days and weeks went on, as I participated on lymebusters, I saw that people were in worse shape than I could have imagined, and that they were content to be, wanting somebody else to solve their problems, with some type of false sense of security, as long as they would believe, and go along with everything they feared. Seeing the wrongful things that people who are ill like this do to themselves, and others, is unlike anything I have ever witnessed. Nobody has ever witnessed such an unprecedented event as what “morgellons disease” hath wrought.

None of you can work out your own problems, and why you can’t, is understandable, given how your various, underlying illnesses have caused your sensibilities to run amuck and deceive you, combined with the mass deception of “morgellons disease” veiling it all as some sort of new, and mysterious disease. I hate it, too. I hate what has happened to all of you, so much.

Tallcotton’s and my blog explains, in short, what our separate psychotic experiences were, and how they were not, of course, just like all of you, in any way related, BECAUSE ALL PEOPLE ARE INDIVIDUALS, WITH THEIR VERY OWN, UNIQUE, ETIOLOGIES, but delusional processes can be so much alike. We almost died, but we were better off than you are.

My skin was literally like cellophane at one point, after dehydration, from a busted (heat pump) air conditioner, led to heat rash, heat exhaustion and the formation, and excruciating passing, of kidney stones. I was a very sick person, and lost all of my epidermis, during an early part of that two month bout of heat induced illness that also affected my mind.

Those old comments that you’ve brought up, were of my explaining, how, “after” I had gotten myself partly back into reality, fibers were deep inside of my epidermis. They were prior to that, too. As sick as I was, stripped of all my outer skin, everything stuck to it.

Randy Wymore is sick. You can’t understand a darned single thing, either, and taking so many meds sure adds to it all. It is to the advantage of all “experts” involved in this, that anyone who thinks they have “morgellons disease” can’t reason.
#153 Greggybooboo
July 3, 2007

Hi Mary,

No,no, no, no, no, no you’re all wrong sweety. I didn’t get that from LB Forum. This was from an email that you sent to somebody, “Of whom you later turned against.”

From: Mary Barr behavingmeself@yahoo.com “Adapted”
Dated: 2005
You were also telling accounts of one:
Rick Grove weekend_storm@yahoo.com “Bugs Alive”

You were telling this person how you had overcome your “Morgellons Symptoms” and made similar statements along the lines as you had in the past, “From eating good food and drinking water or liquids,” as well as the sweating and taking the hot, steamy showers, in which the Fibers had poured and gushed out of your body, covering yourself in dust and fibers. Would you like to see the emails? This was a very recent experience when you wrote the email.

You knew exactly what you were talking about, because this is the time in which you joined “MorgellonsWatch” to engage in battle against the truth of “Morgellons Disease,” of which in these letters, you speak about all of this, and how you were now enlightened to the truth of the Delusion, (as you would say)

Smiley, you even gave me links to similar statements when I spoke to you at Digg.com. It’s all history now, you can’t hide from these things. I have all of the bookmarks, as well as copies of the accounts.

Also you didn’t happen to just stumble upon the “Morgellons.org” website from a radio broadcast. Mary, you know all of this! You go way back to the NUSPA forum which closed long ago, where you had met Rick and and there began your relationship with him. You were already very much into this field of Morgellons before it was given this title by Mary Leitao, and you were aware of all of the MRF endeavors since the time that they were first formed. You and Rick even had contact with Mary on occasions.

I know all about your past with this “Mary,” as well as with Lois of NUSPA, so don’t try to weazle and squirm out of this one. Many, many people knew you way back then, of whom you’ve betrayed every since, both you and Tall. That’s why they were glad to give up your past writings to them, and to transfer them to myself.

At LB I never asked a question like you’re saying, “Does anybody have plants come out of your skin?” and you always made it a point to stay far away from me. The only time that you ever answered in a response to me was when I mentioned that people should trust the Government more than YOU did, and I informed you that the Government had helped me out many, many times. However, now you laugh, mock and ridicule the suffering when they happen to display their lack of trust in the Government.

You gave a list of details as to why a person shouldn’t trust the Government and replied that I was very “Naive.” You replied back to me that, “You would sure like to see my examples of when and how the Government actually helped me out,” of which I never responded back to you.

Would you like to see those writings also?

This was when you and Rick, “Bugs Alive” began to make your final exit as you joined in hand to hand combat with MorgellonsWatch.

You aren’t going to wiggle out of this Mary. I’ll spill it all out on the table right now in front of everybody. I told you that my patience has run out with all of the shenanigans. Are you still smiling, and do you still wish to play?

Your sweetypie,
Greggy booboo
#154 Greggybooboo
July 3, 2007

Also Smiley,

I’ve given my account with my Dermatologist, of which lasted about 3 minutes. I never brought in my blacklight to him,
#1) Because I didn’t have a blacklight then.
#2) The Derm never even looked at my skin
#3) So he couldn’t have and didn’t tell me that it was sun damaged
#4) Yes, there was a time that I was very upset that people were talking about their experiences on a Forum “where everybody could see what was being said,” while your boyfriend was saying that he “viewed fibers break open, and traffic lights and dominoes spilled out”

Oh yes, I was very concerned. Did you like that? I assume so.

#5) You still haven’t told us where this phenomenon is written in “Dermatology Journals” of your fibers and fuzz pouring and gushing from your body, after years of being stuck under the skin. You still haven’t informed us of what Dermatologists support and believe that this is a “Natural Phenomenon” which happens to people, and that it shouldn’t be something to worry or to be concerned about.

#6) You still haven’t given an honest response to my first few posts in regards to the photos of the “Fibers in the Tissues” and what, and how they are produced in the tissues.

#8) Now you are stating that Professor Wymore is sick.

#9) Albendazole, Septra DS as well as Diflucan are prescribed medicines by physicians, which are prescribed to combat certain pathogens. A person is required to obtain liver panels every couple of months while on some of these drugs, especially at higher prescribed doses, and all of this is done under the care of treating physicians.

#10) How does this have the effect that you state in this comment: “You can’t understand a darned single thing, either, and taking so many meds sure adds to it all. It is to the advantage of all “experts” involved in this, that anyone who thinks they have “morgellons disease” can’t reason.

DRUGS HEAL PEOPLE AND MAKE THEM BETTER SMILEY. Albendazole gets into the brain and CSF very effectively, and it causes people and brain function to get better, when the pathogens die off. Yet you’re speaking against the complete medical establishments when you say what you say. People get better when treated with these drugs, not worse. When pathogens are killed it causes the brain function to become better.

#11) Smiley, there aren’t any personal attacks allowed on this board, yet you are attacking me saying that
“I can’t understand a darned thing”

#12) I speak with a number of Medical Professionals who don’t view “Morgellons Patienst” as people who can’t reason
#155 Smileykins
July 3, 2007

I’m sorry. I didn’t mean to attack you, Greg, I’m not accustomed to the style of communication(?) of “morgellons disease” patients. I agree with everything that you think.
#156 Greggybooboo
July 3, 2007

It’s about time you fessed up. I have no more questions for you at this time.

Your Greggy booboo
#157 Sarah Olson
August 14, 2007

Possible Morgellons connection???
CAPS mine-

QUOTE:
The man who died from the worm infection was a 44-year-old accountant from the San Francisco Bay area who had been infected with the AIDS virus for five years. He often went CAMPING in California and had two dogs but HAD NEVER TRAVELED OUTSIDE THE UNITED STATES.

****************************************************

Doctors Discover New Worm, One That’s Lethal to Humans

NYT
By LAWRENCE K. ALTMAN
Published: June 28, 1996

Scientists in California said today that they had discovered what they believe is a previously unknown parasitic worm that can be fatal to humans.

Fragments of the worm were found in an AIDS patient who died from the infestation, but they were not identified until a year later. The worm had molecular biology resembling that of a tapeworm but acted more aggressively in the body than most tapeworms.

Doctors initially thought the patient was suffering from a rapidly growing cancer in his abdomen. But a biopsy and the use of new genetic laboratory techniques found that the large mass of tissue was from the worm’s fast growth, which caused scar tissue.

In reporting the discovery in the international journal The Lancet, Stanford University scientists said they wanted to alert doctors to the worm’s existence so they might treat anyone suspected of having it with drugs known to be effective against similar parasites.

The scientists who solved the puzzle are from both Stanford and the Kaiser-Permanente Medical Center in Santa Clara, Calif. The authors said they did not find the entire worm, which has not been named, but identified it from fragments by using the genetic techniques.

The scientists do not know how often the new worm causes disease in humans and where the microbe exists in nature, Dr. David Relman, a co-author, said in an interview.

In recent years, scientists have identified a number of new microbes, including one called cyclospora, which is causing intestinal illness in at least 11 states. Health officials have tentatively linked many such cases to eating fresh fruits like raspberries and strawberries.
The man who died from the worm infection was a 44-year-old accountant from the San Francisco Bay area who had been infected with the AIDS virus for five years. He often went camping in California and had two dogs but had never traveled outside the United States.

In early 1994 he began suffering pain in his abdomen and back, weight loss, sweating at night and fever. After the man was admitted to the hospital in Santa Clara in March, his abdomen swelled as the worm invaded and destroyed parts of his intestine and liver. Doctors initially thought he had developed one of the many types of cancer that often complicate the course of someone with AIDS. Shortly before his deaths nine weeks later, doctors performed a surgical procedure to remove tissue from his abdomen.
Pathologists headed by Dr. Luis Fajardo examined slides containing thin slices of the man’s tissue under a microscope. Some were stained with chemicals to help identify a known microbe. But the experts could not determine precisely what it was in the tissue that caused the man’s death, although the damage seemed to be caused by a parasitic infection. It then took about a year to solve the mystery.

Slides were sent to pathologists and experts in cancer and infectious disease around the country. Some infectious disease specialists thought it was a cancer. But some cancer experts thought it was an infection.

The cells were too small to be of human origin. But they were unlike those of any known parasite.

Eventually a chemist at Stanford found unusually large amounts of silicon in the tissue, a finding inconsistent with human tissue.
About 10 months after the man’s death, Dr. Fajardo asked a Stanford colleague, Dr. David Relman, to help solve the mystery by using a strategy he had developed and used to identify a new microbe as the cause of a rare illness called Whipple’s disease a few years ago.
Dr. Relman used a molecular technique, polymerase chain reaction (P.C.R.), to create millions of copies of some particularly useful sequences of DNA from the suspected microbe. Since such DNA blueprints vary in various species they are used to help classify microbes.
But the sequences from the man’s tissue did not match any stored in genetic data bases. The sequences were distinct from human DNA and placed the microbe in the tapeworm class, Dr. Relman said. Sequences have been determined for far fewer disease-causing tapeworms than for disease-causing bacteria.

“We don’t know whether this is an organism that has been recognized previously and may be quite well known but has not had its sequence determined, or is truly novel,” Dr. Relman said. “But we think it is a truly novel organism because the pathology is unusual and has not been published before.”

It is not known whether the AIDS-weakened immune system had any effect on the infestation’s course. —

“There is no wealth but life.” – John Ruskin
#158 Smileykins
August 18, 2007

I recommend following up, with the rest of the story…

Fajardo and his colleague David Relman, learned about delusions of parasitosis the hard way. In 1996 the two physicians published a paper in Lancet reporting the discovery of a brand new parasite, which had been found in the liver and in other intra-abdominal tissues of a man with AIDS.

http://healthresources.caremark.com/topic/parasitosis

Upon reading that article, last year, I’d noticed the parallels to “morgellons disease” patients/believers/victims.

Then, a couple of months ago, some of the patients were discussing the article on Lymebusters’ message board, and one of the longstanding believers (with a notable history for promoting the recognition of her illness), said that she had been one of those panicked callers that the doctors mentioned in the above link.
#159 Vivian Snipes
February 24, 2008

I have the disease Morgellons for the past 10 years at least. I had never heard the word “Morgellons” until 2/19/08 and thought I had scabies all this time (what a joke). But, I did not have the fibers come out until recently (but did have the granules and black matter and specks for some time). This can be verified by ex-husband. I am keeping specimens for possible examination and have two “bodies” of the creatures that came out of my skin. Bodies still intact and very definite (would the CDC like to examine them?) They are available.
#160 DAVID KAYE
March 31, 2008

i have had these symtoms since 1998 after working on my farm i drank some water out of a rural water system call red river water athority in childress co.tx i was laugh out of amarillo tx by most of the doctor in desease field and put on the nut ward a few times so i have learned to be silent when someone yells bug but i think i can talk now to someone about it.
#161 oyunlar1
April 2, 2008

great article
#162 Ursula
June 18, 2008

From Dr Smith: ‘In these patients, agrobacterium was NOT cultured from the patients’ body. The DNA was detected by PCR testing in Dr. Vitaly Citovsky’s lab at StonyBrook. The samples submitted were skin biopsy specimens done on out-patients in the course of routine offiice visits. The patients were not acutely ill at the time and none had an in-dwelling catheter at the time. It is my understanding that 7 of 7 patients with Morgellons tested positive for agrobacterium and 0 of control patients were positive. (Sorry I don’t know the number of controls done so far.)’
#163 Ursula
June 18, 2008

In the previous post I directly quote what a medical doctor has said about the agrobacterial infections being diagnosed by the PCR technique.

The London scientific organisation entitled ISIS opine that it could well have been Professor Citovsky’s remarkable findings that spurred the CDC into investigative action.

As a scientific body, this was a reasonable conclusion for them to arrive at, but much more could be said from a legal perspective, when one examines the type of investigation entered into, and thinks about who is included and who is not.

Sufferers who are getting worse (because they are unexamined and untreated) may not be included into the group of people included within the cohort.

There may well be scientific grounds for including a group of people who had consulted a medical organisation about this disease within a specified period of time, but this is not just an epidemiological issue, or one that is only concerned about sufficient numbers and validity.

Some of those not included within the chosen cohort may be getting worse.

It is not legally sufficient for them to be asked to be patient when they have not had the PCR test carried out on their biopsied tissue, and have thus been denied treatment for the infection that has been present within 100% of the affected patients tested so far.

When you write your letters, or seek legal counsel, you must realise that the legal duty of care is owed to you as an individual, not to the understanding of the putatively new condition per se.

If you do not stick to this point with unswerving tenacity you will have to accept the unsatisfactory (for sick and untreated individuals) alternative of sitting and waiting for an epidemiological investigation to be completed.

The latter may take quite some time, as can be ascertained when one reads the press conferences on this issue, available on the internet.

It is a good thing that this investigation is being carried out, and it may well help many people in the not too distant future (in the grand scheme of things).

But, as I have said, I think that your individual time scale is much more pressing, and this is the point that you have to make in your letters to Senators etc.

The fact that there is a reliable clinical test, and that the infection requires treatment, and that you are not sitting in a timeless limbo in which non-treatment does not matter – for you as a sick individual – is the cardinal and crucial point that you must make and keep making.

Denial of the reliable test and required treatment may well cause you direct harm.

This is the crux of the applicable common law of negligence.
#164 TheUnknownCat
July 27, 2008

http://blogcritics.org/archives/2006/05/15/195723.php

#212 — July 19, 2008 @ 14:32PM — Smileykins
Sorry for having been so very wrong on all accounts and statements… Morgellons is real very real!
#165 Smileykins
August 27, 2008

Pardon me, if I failed to realize that the above comment, falsely attributed to me, has been allowed to remain here for a reason.
#166 JRuss
January 8, 2009

A year ago I was diagnosed with DOP. Then I did my own research and found I had all the symptoms of Morgellons. Later I found a reference to a link between Morgellons and GMO. Because of type 2 diabetes, I had already stopped consuming High Fructose Corn Syrup. I had lost 40 lb. But I then stopped eating anything with GMO corn in it and the symptoms of Morgellons went away. [The lesions did leave scars.] After about 8 months, I no longer was a diabetic as long as I stayed away from GMO Corn. When I did eat something with GMO corn, all the Morgellons symptoms returned.

http://Opinion.FarTooMuch.Info/GMO.htm
#167 Ed Scherer
December 9, 2009

Hello,
I can’t wait for some of the doubting Thomas doctors out there to either be afflicted or see their loved ones afflicted then perhaps they will begin to believe something is going on. Innocently, I began photographing insects, mainly larvaea and worms, exiting various spontaneously forming wounds on my body. I have tried in vain to get just an appointment with an infectious disease doctor and when I describe my symptoms am not granted an appointment. I am not delusional. I have witnesses who have watched in horror as I have tried to remove worms from my skin that have actually tried to bite me as I have tried to remove them. Yet doctors do not believe me without even examining me. I fear I will die from severe physical damage from these creatures yet cannot get medical attention. It is unconscienable how arrogant these western physicians are and how on earth can they call themselves physicians when they refuse to see patients. That is my 2 cents worth. Regards, Ed Scherer, Baltimore, Maryland
#168 Marianna
June 2, 2010

Hi Ed,

This sounds terrible. Have you managed to see a healthcare practitioner who understands your symptoms by this time?
#169 Ed
Oklahoma
July 4, 2012

I’ve had something with Morgellons attributes for close to three years without being able to tie it to a specific condition. I think it’s one or more helminth related infestations, likely trematode. I’ve seen numerous blue fibers, some of which are from my blue jeans and some of which are protruding from a cutaneous/subcutaneous “egg capsule?”, likely harboring one/more trematodes. The blue jean fibers are usually unaccompanied by traces of blood while the others usually are due to the plucking of the object(s) with tweezers and the separation from a blood supply.

I think Morgellons is likely a catch-all for any number of parasitic-related conditions. There are so many species that one could look for years and not find their particular species, assuming it’s been identified at all. New ones are found all the time.

The CDC study was a farse. They worded it to draw the mentally ill. Many parasitic infections are coming in with the illegal aliens from Mexico including some deadly/blinding ones. The government probably doesn’t want that divulged so they sabotage any study that might implicate the free slave labor they arrange for the big political contributors. CDC was caught for previous misrepresentations when Bush pressured same to ‘adjust’ global warming reports.
http://blogs.discovermagazine.com/badastronomy/2007/10/29/confirmed-bush-suppressing-cdc-science/

I definitely think Morgellons exists as a general term for likely parasitic conditions. It might not be the exact same condition in each sufferer but until their condition is formally identified, Morgellons is just as good a name as any. Not knowing what it is almost as bad as having the disease. It consumes all your spare time trying to figure it out.