Monday, June 11, 2007

This article says mystery, but others claim chemtrails. Meet Morgellons: a condition that may be coming to a sprayed area near you

The Morgellons Mystery

A just-christened illness involves disorientation, multi-colored fibers bursting from sores, and the sensation of bugs crawling under the skin. Is this an age-old delusion or a disturbing new disease?



By:Elizabeth DeVita-Raeburn

Four years ago, Mary Leitao plucked a fiber that looked like dandelion fluff from a sore under her 2-year-old son's lip. Three pediatricians, three allergists, two dermatologists, and many misdiagnoses later, she realized she had a problem. Her toddler son, Drew, had developed more sores, with more fibers poking out of them. Sometimes the fibers were white, and sometimes they were black, red, or blue. He also believed that insects were crawling under his skin, something he conveyed, in two-year-old fashion, by pointing to his lips and saying "bugs."

It wasn't eczema, or an allergy that physicians could discern. Something was seriously wrong. But no one believed Leitao. The last doctor she tried to consult, an infectious disease specialist at Johns Hopkins University, not only refused to see her, but based on Drew's growing pile of medical records, suggested it was a case of Munchausen's by proxy, a psychiatric syndrome in which a parent pretends a child is sick or makes him sick to get attention from the medical system.

Frustrated, in March of 2004, Leitao picked a name for what afflicted Drew: Morgellons disease, from an obscure, 17th century French medical article describing an illness, called the morgellons, in which black hairs emerge from the skin. Then she put up a Web site. "I was hoping to hear from scientists or physicians who might understand the problem," she says. Instead, she heard from thousands of others, all describing the sores and fibers and an additional laundry list of neurological symptoms that included brain fog, fatigue, and muscle and joint pain, among others. "That's when I started to realize how big this problem was," says Leitao.

Many of the people who responded to Leitao's Web site—more than 8,000 to date—are, like Leitao, locked in conflict with doctors who don't believe they or their children are sick. This is not a new illness, say doctors, but a time-honored psychiatric disorder called delusional parasitosis; patients with the rare condition—mostly middle-aged women already anxious and depressed—claim to feel subcutaneous bugs. So-called Morgellons disease is just a variation on that theme. Medical skeptics complain that Leitao's Web site and the evocative name she chose are giving people a framework on which to hang their delusions, thus impeding the true, accepted treatment: antipsychotic drugs.

The debate has grown so heated that, recently, the federal Centers for Disease Control and Prevention got involved, and not because they wanted to. They were inundated with calls from irate people who say they have this disorder and want answers. "More typically we get a very credible indication of an emerging problem from an official source," says Dan Rutz, spokesperson for the CDC. "This was driven by lay people and some clinicians who are frustrated and not sure what to do with these folks." The CDC is currently in the process of assembling a multidisciplinary research team to examine a cluster of patients sometime in 2007.

Until then, the Morgellons mystery continues.

The Mainstream Viewpoint
Because skin symptoms are often the most visible aspect of this disease, dermatologists are usually the first to be consulted. Most have no doubt that what they're seeing is delusional parasitosis. One reason is that Morgellons patients often present them with what they consider to be hallmark evidence: a sample of what's in their skin. Psychiatrists call it "the matchbox sign," a reference to the little containers in which the samples are typically stored. (Some doctors now call it the Ziploc sign.) Morgellons patients often show up in the doctors' offices carrying Ziplocs full of fibers; dermatologists say they are simply fibers from clothing, embedded in self-imposed sores, whereupon they promptly offer a prescription for antipsychotic medication. Rarely, complain the patients, is their skin examined first. "You think you're bringing them evidence, but you're really just shooting yourself in the foot," says Leitao. "It just closes the door."

Noah Craft, a dermatologist at the Harbor-UCLA Medical Center in Torrance, California, has seen a handful of Morgellons patients, and talked with a number on the phone. He is one of the dermatologists who was approached by the CDC to take part in their investigation. He saw his first Morgellons case about three years ago. She came in talking about fibers. And though she didn't have a Ziploc with her, she was clutching a printout about Morgellons from the Web. Like many Morgellons patients, she'd been to 10 or 12 doctors before him, to no avail. Craft says that he, unlike many doctors, always examines these patients. There are a number of reasons one might have the sensation of crawling under the skin. For one, he says, there are real bugs, scabies, that do burrow into people. And withdrawal from drugs like methamphetamines can cause that sensation; so can chemical exposure, allergies, and dry, sensitive skin.

Once Craft had a patient whose crawling sensation turned out to be melanoma that had spread to her brain. "You have to do due diligence to rule out other causes," he says.

But when Craft examined his first patient, he found no evidence of anything unusual. And because he saw nothing, he felt no reason to do something as invasive as a biopsy. "I thought it was delusional parasitosis," he says. Gently, he suggested that the condition might be psychological. She never came back.

Since then, with other Morgellons patients, he has taken the examination further and biopsied their skin. But he's seen nothing to suggest that it's a real condition—especially not fibers in the patients' skin. In fact, the only place Craft says he has ever seen the fibers are on Leitao's Web site. From his computer screen, he says, "they look like fibers of fabric and, on occasion, collagen fibers from within the skin. In the biopsies I have taken, there appear to be only normal skin and inflammation, as one would find in a bump that has been picked at."

Lone Voices
While most physicians seem to lean toward the delusional parasitosis diagnosis, there are a handful of people who think there's something real going on here. About a year ago, Oklahoma State neuroscientist Randy Wymore stumbled upon Leitao's Morgellons site and became intrigued. Wymore called Leitao and asked if there were any fiber samples he could look at. Within days, Ziplocs were arriving in the mail from around the country. Though the fibers all resembled one another, he says, they looked like no other synthetic or natural fiber he compared them to. Ultimately, he asked the fiber experts on the Tulsa police department's forensics team to examine them.

First they employed a type of spectroscopy that identifies the chemical structures of fibers and compared them to their database of 800 fibers. No match.

Next they subjected fibers to gas chromatography. Compounds put through this process are encased in a vacuum chamber and exposed to high heat; the temperature at which they reach boiling point is a clue to what compound they are made of. The forensic experts had a database that included the boiling point of 90,000 organic compounds with which to compare the fibers. But the machine ran to its highest temperature, 1,400 degrees, and apart from some slight blackening, nothing happened. The fiber experts were mystified. "The conclusion we were left with is that they are unknown fibers, not simply contaminants from clothing sticking to scabs," says Wymore.

Wymore, who is not a physician, also asked Rhonda Casey, the chief of the pediatrics department at Oklahoma State University Hospital, to take a look at some of the patients for him, to get a medical opinion. "Honestly, when he first told me about it, I thought, they're all nuts," says Casey. But she changed her mind. "There was not one patient I saw who did not look ill," she says. What's more, they all looked ill in the same way, with neurological symptoms, including confusion, foot drop, in which a person loses control of their foot and has trouble walking, and a sagging mouth when they spoke. Many had been diagnosed with atypical forms of neurological diseases like Parkinson's or amyotrophic lateral sclerosis (Lou Gehrig's disease).

She examined their skin via a dermatoscope, a light tool with a magnifying lens. And she did biopsies on both their lesions and apparently healthy skin. She says she saw fibers embedded in both places. The white ones, she says, are hard to see. A dermatologist who either didn't look at all, or didn't use a dermatoscope, might not see them under the skin. But some—the black, red, and blue ones—are blatantly obvious, she says. One young girl had a small pimple on her thigh with a bundle of black fibers just barely protruding from it. Many doctors have accused these patients of embedding fibers in the sores themselves, but Casey doesn't believe it. "As a physician, I can't imagine reproducing what I saw in that little girl's leg."

There's also some evidence of an overlap with Lyme disease. Ginger Savely, a San Francisco nurse practitioner with a long history of treating Lyme patients, now sees Morgellons patients and says 90 percent of them test positive for Lyme disease. "I think that one of two things is happening," she says. "Either there's a co-infection people are getting at the same time they get Lyme, because there are a lot of infections spread by ticks." Or whatever is causing Morgellons is something ubiquitous that many of us are exposed to, but the disease develops only in people with weakened immune systems, like those with Lyme disease.

Morgellons on My Mind
One complicating factor, as even Leitao and Casey admit, is that there are neurological and psychological symptoms that come with Morgellons that make the patients difficult to deal with at times, and make it seem as if they really belong on the psychiatrist's couch. "Patients start to act unusual," says Casey. "They get forgetful. They often have a speech hesitation, and they often have a hard time telling their story coherently." To her, it's not surprising. "The disease affects the brain."

New Jersey psychiatrist Robert Bransfield, who has a number of Morgellons patients, agrees. "They don't start out difficult to deal with," he says. "But when it progresses, it can result in quite extreme paranoia, even delusions." Others have been diagnosed with bipolar disorder, ADHD, autism, and even atypical Parkinson's as a result of their personality change.

Beyond all that, being told it's all in your head when you feel sick is bound to be hurtful, says one Morgellons patient who happens to be a clinical psychologist working with chronic-pain patients, who are in doubt themselves. The hurt leads to contentious encounters with doctors, who then feel more justified than ever in seeing the patients as primarily psychiatrically disturbed. Indeed, the medical literature on delusional parasitosis is full of discussion about how to broach the subject without alienating the patient. An article on Morgellons in the November 2006 issue of the Journal of the American Academy of Dermatology actually argues that Morgellons is a gift of sorts—a way of suggesting the delusional parasitosis diagnosis without having to use the off-putting word "delusion."

Casey says her stance on Morgellons is legitimate because of the many cases she has seen. Most doctors opining about the condition—Craft, for instance—have seen just a handful of patients at best. "I think it's a disgrace," she says of medical peers who have dismissed the patients without studying the phenomenon in full. Physicians are busy and have about 10 minutes to spend with a patient, she adds. They want to walk into a room, know what's going on right away, and write a prescription. Something unusual is time consuming and difficult, she says, and many doctors don't have time.

Besides, doctors are trained to find an answer. Many will make a diagnosis of delusional parasitosis or hypochondria more readily than conclude an office visit without a diagnosis. Nor is the system necessarily set up to investigate an unknown quantity. "If you send a fiber sample to lab, the report will often come back saying textile contaminant," says Casey. But she watched one laboratorian label a fiber by simply looking under a microscope. "I said, 'How can you tell?' And he said, 'I'm looking at it.' And that's how it's done in every lab across the country." That's why she asked forensic fiber experts to take a look.

On a deeper level, the structure of modern medicine can discourage examination of complex, multisystemic disorders. Most doctors are still poorly prepared to address illnesses with both physical and psychological components. "Your average physician does a one-month rotation in psychiatry in medical school," Bransfield says. So when there's a disorder that has physical and psychiatric symptoms, physicians often don't understand how to put all the pieces together. "One way to think of it is that there's quite a bit of cross talk between the immune system and the nervous system," Banfield adds. "But there isn't a lot of cross talk between psychiatrists and immunologists and infectious disease doctors. The way we've compartmentalized specialties contributes to our difficulty in dealing with problems like this." When diagnoses are in this gray zone of understanding, they often end up in the field of mental health, he says, even when there's a solid physiological cause.

Down the Road
It's hard to say yet which pattern the Morgellons phenomenon will follow. Will it be the next Lyme disease, validated by the medical community? Or will its victims reside in diagnostic purgatory forevermore? Medicine is full of phenomena that sounded like psychological ailments when first proposed but are now linked to invasive pathogens. Ulcers are caused by spirochetes, not stress. Syphilis is a bacterial infection that reaches the brain, not a kind of insanity. Tuberculosis is another infectious disease, not the psychosomatic illness it was first thought to be.

But while these stories become bits of medical lore, and the names of the scientists who made the discoveries are now well-known, the stories of the patients who were caught in the middle of the confusion are rarely told. Mary Leitao says she never wanted to be an activist. "I'm just a scared mother," she says. And she wants an answer, whatever it is, soon. Not long after Drew became symptomatic, his two older siblings, Jeremy, 16, and Samantha, 17, started exhibiting signs of it, too. Samantha is plagued by cognitive problems, fatigue, and joint pain. She was once in the gifted program; but now, in her senior year of high school, just started homebound instruction. Jeremy also suffers from fatigue and some cognitive problems. But he pushes himself to get to school. "I'm not sure how much longer he can push himself," says Leitao. Drew, now 8, doesn't seem to be cognitively afflicted, but his skin, she says, is riddled with sores and scars.

There are other families in which more than one person suffers from the symptoms too, says Leitao. But rather than see that as an indication of the disease's infectious nature, the medical community has labeled it "folie a famille" (madness of the family). They have, she says, an explanation for everything.

Diseases Under Fire
The controversy over Morgellons is just the latest example of medical establishment skepticism. Diseases greeted with incredulity in recent years include:

Chronic Fatigue Syndrome: A disorder characterized by persistent and crippling fatigue unrelieved by rest, tender lymph nodes, trouble concentrating, muscle and joint pain, and headaches. Lab tests may reveal nothing unusual.

Status: Generally accepted. The CDC now recognizes it as a legitimate disorder.

Fibromyalgia: A chronic pain disorder in which sufferers complain of aching in their muscles, ligaments, and tendons. It may be triggered after an illness or after injury impacts the way the nervous system processes pain.

Status: Mostly accepted; some doctors are still skeptical.

Chronic Lyme Disease: A syndrome of pain, fatigue, and cognitive symptoms that continue after several weeks of treatment for documented acute Lyme.

Status: The subject of medical debate with two camps arguing over whether it is infectious or post-infectious.

Multiple Chemical Sensitivity Syndrome: Low levels of exposure to chemicals like gas, perfume, and smoke cause symptoms, including extreme fatigue, burning eyes, wheezing, breathlessness, muscle and joint pain, and poor concentration. It's also known as idiopathic Environmental Intolerance.

Status: Hotly debated.

Gulf War Syndrome: After troops returned from the Gulf War in 1991, many veterans complained of fatigue, joint and muscle aches, cognitive problems, headaches, and respiratory difficulties.

Status: Still under debate; some speculate it may be related to MCSS.

Original article posted here
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7 comments:

silentlamb said...

Hi Weazl,

I have been infected by this hideous disease for many years now and I have children that also display the physical symptoms so finding some type of medical help for this affliction is paramount for me. There is none to be found, even when the doctors do believe you and see this phenomena happen right before their own eyes, they do not have a clue as to what to do.

Because this is not yet recognized as a legitimate illness the deaths that have been speculated to be caused by this condition are going by unaccounted for. Here is just one example of a family who is in this very situation. Leighann’s sister Beth has now passed on since this news clip.

http://youtube.com/watch?v=HQcL8RojBL4&mode=related&search=


I don’t know how this can be happening, but God as my witness, it is.

Your profile says that you have a background in law. Can you please lend any advice that may result in getting treatment for the infectious condition that it really is? There are over 10,000 family’s registered at the Morgellons research foundation as of right now and this number can include several family members in one household making that number only slightly representative of an accurate account for those infected.

The Center for Disease Control has stated that they will investigate but that investigation has continued to be delayed time and time again for well over a year now.

Our elected officials have been informed and asked by their constituents to intervene on their behalf and help in any way they can. Here are just some examples that can be found on the Morgellons Research Foundation website.

Morgellons.org (click on “CDC”)

Click here for first CDC response to US Senators, dated June 18, 2004

In December 2006 U.S. Senators for New York, Hilary Rodham Clinton and Charles Schumer sent a letter to the CDC Director asking for the CDC to expedite their investigation of Morgellons disease.

Click here for Clinton/Schumer letter to CDC.

The CDC has yet to begin their investigation and people continue to suffer and die from this “mystery” illness in our America as well as other countries.

We have no idea how this condition is being transmitted but if you talk to any one who is infected they will tell you they have seen this spread from person to person and highly suspect it is contagious.

The word “nightmare" does not begin to describe this situation. We need divine intervention, and a damn good lawyer, can you help?

Thank you for your time and your thoughts.

silentlamb

Da Weaz said...

Thank you for stopping by. I will do all I can, but have to admit, that we are fighting an uphill battle. But I am trying to get information.

silentlamb, the body of reports associated with Morgellons seems to suggest that this might have something to do with aerial spraying. Have you ever seen these long streaks of smoke that stay in the air for a quite long period of time, and even sometimes may form grid like patters?

Go here for an example:

http://www.globalconscience.co.uk/USERIMAGES/chemtrails4.jpg


It has been said repeatedly that the cause of the disease are that the fibers have been contained in debris that is left, and so if you and others have ingested these fibers (and other microbiological parasites contained in the chemtrails) this forms the basis of what is causing these lesions and rising to the top of your skin.

Please let me know whether this has happened, and I would ask to you try to contact as many other people who have this condition to see if they too have had this chemtrails debris overhead. The best way I can help is if we can try to establish some kind of record. As you know, however, we are facing a stiff wall of silence, but where I am located offers the possibility that perhaps some questions can be answered. Unfortunately, I am quite concerned about this possibility as where I am located, we have recently been sprayed too.

Please keep in touch and if you want to write me directly, please do at thelegendaryweasel@gmail.com

dereck72 said...

I'm glad to see someone new taking an interest in this subject.
I have been suffering with this since the summer of 2000. I went from having a successful consulting business to unemployed in a 2 year span. In 2003 I was forced to take a year off as I couldn't travel...whatever was going on was exacerbated whenever a plane cabin pressurized. Well after a year of not doing anything I followed the advice of some of my fellow sufferers and had western blot tests performed for Lyme...guess what...positive! Now bear in mind I did have the standard ELISA test done in 2002 and it DID show antibodies for Lyme but according to standards the titer wasn't high enough scored 18 with 32 being considered positive. Now, nobody ever considered that I had been on a couple of cycles of antibiotics before that which may have had an effect on the first test.
I have had all of the complaints that are mentioned on the Moregellons website, but more importantly, I have had those complaint PRIOR to ever finding fellow sufferers. So in my opinion any nasayer who think this is fed by the internet...thta arguement holds absolutely no water. This is real, I can say that LONG term treatment with antibiotics has improved my situation immensely.

Da Weaz said...

Dear Derek,

I am not a doctor, so I hope that you will have a bit of patience with me. But rather I think that rather than the statement "I have had all of the complaints that are mentioned on the Moregellons website", it would be helpful if you could spell it out in more detail. If you want (and feel it is not an invasion of your privacy) you could send me the information to my email, from which we could correspond. If you want to talk by phone, that is definitely possible too. One of the most important questions that I have, however, is how do you think that you might have contracted it. I understand that some of the people have linked up through internet groups and so you may have a good idea of the stories people are telling each other. It would be helpful to try to get a sense of what are the stories people often saying about how they feel they have gotten this affliction. On another note, it would be interesting to know whether sufferers believe that this is infectious or not.

I understand that it may seem quite a crapshoot to engage with someone like this. But I think that all of us need to take a bit of risks, because I believe that the odds stacked against us are frighteningly high, and it will only be through trust and working together with (almost) blind faith can we even put up a good fight.

Thanks for responding.

dereck72 said...

I will tell you that in the summer of 2000 I was assigned to a project in winston salem, NC. I was previously on a job in richmond, VA. This is the period when I know that this developed, how exactly is a little tough to nail down.
In richmond is where I met my future ex-wife who did show signs that something was wrong with her.
One of the first nights I spent with her I woke up with the bed soaked with the worst case of night sweats I can ever recall. In the weeks following I became extremely intolerant of any kind of heat and had to sleep with the AC at like 60-62 degrees for a while. I was always very much into my career and avoided seeking a doc as I figured it was just a bad case of the flu or something that would subside. On a few occassions I did get light headed which was never the case with me since I was only 25 and in pretty good shape.
After a few months we did get engaged and I was relocated to the assignment in NC. My then fiancee and I decide we would both go. This is when things started to get bad. The moment we moved into a corp apt. furnished with used rental furniture I began immediately feeling like I was being bombarded by miniature flies or gnats. Felt biting or stinging and could here them buzzing my ears. I would keep me up constantly for the whole time we were there. From that point everything went slowly downhill from there. It was such a slow process it didn't see a doctor until around maybe june 2000 while we were in princeton, NJ...by then my symptoms were still itching, sinus problems, nausea, and numbness in my left arm. I had absolutely no energy either. After a few months I progressed to having liver/gall bladder pain also...began testing positive for elevated liver function ALT.
This constant feeling of sickness took its toll on our relationship, my wife and I split up in april of 2002.
I still felt pretty bad with nausea, pain in my upper right abdominal quadrant, and a lot of fatigue. unfortunately this was just the beginning...I will have to continue tommorow.

Da Weaz said...

Did you have any of the skin legions or any fibrous activity?

Ty said...

Here is what works for some relief. I wont say cure because I am still clueless like the rest of victims. The weird part is the fibers, I KNOW I saw what looked like an *intelligent* fiber creature get on my ankle and I tried my damnest to scrape it off me and it wouldn't. I felt like I saw more "attack" me and for each one I tried to scrape off they ended up not budging and instead *exploded* in black 'stuff' that scabed over. What the hell? If the future is more creepy stuff like this take me back to the past! In the meantime, please take care and use this treatment to help until there is a known documented solution:

1. "OFF" DEET 95%+ DEEP WOODS SPORTSMEN works best (Yes, Insect Repellent). Cover yourself head to toe avoiding eyes. This works to avoid further infection from the outside.

2. NIX CREAM or Wallgreens CREAM Must be a cream, I know its lice cream but this works but I dont know why. It saved my sanity and I can't stress this enough, as soon as you feel them, APPLY APPLY APPLY. This may get expensive, I think I bought over $100 of NIX in the last 2 months experimenting with a formula but I kept reinfecting myself from the outside and from my cloths.

3. SHAVE YOUR HEAD. Whatever these things are, they act like lice by leaving some eggs in my hair that reinfected me. It somehow acts like scabies too but they need my hair for some reason because I noticed my hair was falling out in clumps. When I shaved it and applied NIX and DEET it significantly helped.

4. WEAR GLOVES AND SANDLES. This part is so important because my hands and feet seemed to be the entry points. You will notice them trying to burry through the plastic in the gloves only to die in sufficating.

5. DONT LET UR CELLPHONE TOUCH YOUR FACE. They live on everything and go unscene until they touch your skin. Cellphones, keybords, mouse, bedding everything can be a launching pad for them to attach to you for good.

6. CLEAN DAILY OR MOVE. I hate this part but they will make u so helpless you will want to die. SO clean clean clean and dont touch anything, be naked as much as you can until you're cured. This bug has no shame and will turn u inside out. If u cant clean the area 100% SATISFACTION-move and dont take your stuff with u.

7. HOT water. Use VERY VERY HOT WATER on your hands and body wherever they are and GET USED to the heat because they are vunerable under the heat and will die in place, literally jump off ur body or run around your skin and then explode.

8. Insense burns them off with heat from the insense flame. BE CAREFUL CUZ I FUCKED UP MY SKIN TEMPORARILY TESTING THIS but now I know how close to get the flame. The sick part is that you will feel them burn in your skin before they die. That feels like the spot at which they burn gets hotter than the skin around it under the flame. It feels similar to being stuck with a needle but bear it, they are dying when you feel that.

9. CHANGE YOUR TOUCHING HABITS. You MUST remember what you touch spreads this condition to more parts of your body. If you touched a remote control with an affected hand, and then pick it up with another hand, you infect that one instantly.

10. SLEEP ON PLASTIC. NOT SHEETS. Cover EVERYTHING with plastic. IT SUCKS and is WEIRD but it WORKS. Pillows, Beds and put heaters on and sleep naked. If you sleep in cloths you will need to wash them after you wake up or when you can. Sleeping with blankets just allow them to reinfect you even more every night you sleep with the blanket.

Listen, I am NO expert, I am ANGRY and I am CONFUSED and I AM WORRIED ABOUT *ME* because of the huge impact this has had on my life and the potential impact it can have on my future negatively.

IF YOU SEE 2 SMALL BLISTER BUMPS -- APPLY NIX ASAP!!!!!!! NIX cream was my best defense but it is NOT A CURE. I wish I could do more...