Tuesday, March 11, 2008

300+ Reported Cases of Morgellons Disease in WA State

Some time ago I was in a position to assist a very sick young woman who was battling her disability insurance carrier because they had denied her claim for coverage and medical benefits because she had "delusional parasitosis," and "psychiatric" conditions of this sort were excluded from coverage.

Before becoming ill, this young woman was by all accounts bright, funny and hard-working. When I met her she was unable to work, was broke, and was near-suicidal on occasion from chronic pain.

Three years before, she had taken an extended trip to the San Francisco-Oakland area, and she developed a high fever that lasted several days. Shortly after the fever broke, she began developing painful, incredibly itchy pustules. These pustules broke open but instead of releasing any pus or healing, many of them morphed into deep, non-healing lesions and ulcers.

Then she started noticing very small, multi-colored fibers and speck-like materials in the lesions. When she tried using tweezers to remove these from a lesion on her wrist, she said it "felt like I was on fire. I had incredible pain shooting up my arm." On a couple occasions she actually saw vein-like "somethings" growing under her skin, she would itch uncontrollably, a pustule would suddenly form, and out of it would erupt these fibers and specks. Some of her friends and family witnessed this occur on a couple of occasions.

She couldn't sleep. She kept waking up, feeling like "bugs" were crawling on her. She was fired from her job when the ulcers on her face wouldn't heal.

She went to her GP a couple times seeking relief. The GP witnessed one of these sudden eruptions, documented it in the medical records and took some samples. Then, she was referred to a dermatologist.

To help the dermatologist, this young lady brought along a few samples of the fibers. She only saw this doctor for a few minutes during which he did a cursory exam. Unfortuantely for her (and unbeknownst to her), and for countless other sufferers of Morgellons Disease, this dermatologist concluded on the spot--with no inquiry, testing or bloodwork--that this young lady had "delusions of parasites."

The dermatologist referred her to a psychiatrist "for her depression and anxiety" and she was put on medication for it. This medication caused her long periods of near-catatonia, but did nothing to help with her symptoms.

So she was trapped in a body she couldn't move, feeling like bugs were crawling all over her, feeling like she was on fire, and all she could do was sit there in a brain fog and feel the intense pain, watch the pustules form and watch the fibers emerge from her body. She kept asking the psychiatrist for a referral to another dermatologist, but the psychiatrist felt it was important for her to first keep taking her meds to "stabilize her moods", so he kept increasing the dosage and reassured her that it would help her. So she took these drugs for a couple months until one day she happened to glance at her chart and realized that she'd been had.

Because of the dermatologist's "diagnosis" all along this psychiatrist had also presumed that she had this condition too (though this hadn't ever been discussed with her) and had been dosing her with heavy-duty anti-psychotics.

Through some symptoms-based internet searching, we stumbled upon the Morgellons Disease foundation's website. We learned that her disease progression and symptoms were "classic"--the high fever, the pustules, the ulcers, the terrible itching, the chronic pain, the sub-dermal "veining," and the fibers and specks. We learned that misdiagnosis of this disease as "parasitical delusions" was commonplace. We also learned that there were "hot spots" in specific localized areas of Texas, Florida and California (especially in the San Francisco-Oakland area where she had visited and fell ill) where reports were higher than anywhere else, and that reports of this disease were increasing.

We were able to connect with Randall Wymore, Ph.D., the lead Morgellons researcher in the United States. Dr. Wymore was extremely helpful in providing this young woman's new doctors with information about the disease progression and insights into her condition, and his input was extremely helpful in securing the medical help that she desperately needed. She received large doses of antibiotics and other drugs and treatments similar to what is provided to patients with Lyme Disease and fibromyalgia, and her symptoms subsided.

At the time all of the occurred, about three years ago or so, research into this "emerging disease" was just beginning and because the disease was't yet "recognized" no research funding was available. Dr. Wymore indicated that he and several of his colleages from various scientific disciplines had studied several skin patch samples including the fibers, but they were unable to determine (despite using multiple methods) what exactly these fibers were comprised of, however they did rule out that they were hairs or other organic materials. They did conclusively determine that the fibers and specks were actually embedded within and between layers of skin, not just laying on the outer surface of the skin (as would be the case with a piece of clothing fiber or animal hair, for example).

The CDC's interest in, and funding for research has been slow in coming.

But in the last three years, the number of reported cases of Morgellons Disease has grown all across the United States and elsewhere. Three years ago we knew of just two cases in the Seattle area. Now, in Washington state alone there are over 350 reported cases noted at the foundation's website.

Since this time there has been some national media coverage. There has been additional inquiry and conferences held as to what, exactly, the fibers and specks are and what is causing the disease. Dr. Wymore and his team are methodically experimenting and investigating the disease, but haven't formed any definitive conclusions yet.

Some other researchers not associated with the Morgellons foundation or Dr. Wymore's research team believe that the fibers and specks are comprised of materials commonly used in fiber-optics and nano-technology.

The EPA published a "white paper" in 2007 detailing the growing use of nanotechnology in industries, the inherent challenges of said use, and the possibility of widespread enviromental contamination.

This possibility is frightening.

Now I know that some people reading this post might think that this young woman was mentally ill and delusional, and that I shared her delusions, but this is simply not the case. Consider: I had never met her before and had no social pressure whatsoever to believe anything other than my own eyes. She was suffering, for sure, and was seriously ill, but she was not delusional. Once she was off the psych drugs and received antibiotics, her symptoms abated, and she improved quite a bit, though she still had occasional outbreaks.

When I first did the google searching on this disease three years ago, I came across a short piece on Morgellon's Disease by a Ben Chertoff that was published (of all places) in Popular Mechanics.

Ben Chertoff's piece on Morgellons Disease appears to be the first mention in any larger publication of this disease. Apparently he is a professional debunker, of sorts. But the simple fact of this article appearing in this magazine does raise some interesting questions, among others:

1) What's "mechanical" about this medical disease and why would readers of "Popular Mechanics" be interested?

2) What got Chertoff interested in this disease? Does he have any medical or infectious disease expertise?

3) Why did he not directly contact the nation's leading scientific researcher for quotes?

4) Why did he denigrate people who are suffering in such a cavalier fashion (read the article to get the full flavor of his smary, non-serious "reporting")?

5) Why no mention in the article of the known "hot spots" in the U.S. (which may well geographically correlate with nearby biotech research facilities)?

6) Why write an article debunking this disease when at the time of publication hardly anybody had even heard of it?

7) He's a "professional debunker". But could he also be a paid propagandist?


Elena said...

Thank you for your posting. I do not think this woman is crazy, reason being, I am very ill with Morgellons disease symptoms. I have had these symptoms since I was 10 years old. I am 49 yrs. old now and my symptoms have been full-blown and unbearable for the past three years. My symptoms coming on full-blown started with a high fever, sinusitis, bronchitis, nose bleeding. Then the fibers and particles and threads coming out of my skin and scalp. The fibers and particles are also all over my hair strands. I have lesions and sores that come and go and do not heal and they leave ugly scars. I have severe chronic fatigue. I have been to see about 20 different physicians in the past 2 years and they simply do not know about this. They had me on all different kinds of medicines that didn't help me. I have found Dr. W. John Martin in Rosemead, CA at the Center for Complex Infectious Disease to be very helpful, supportive and understanding. Dr. Martin and his team of physicians have been studying Morgellons Disease symptoms for the past 8 years. His research shows that Morgellons disease symptoms are caused by a stealth adapted virus in our bodies. Our bodies immune systems are producing the fibers/particles/threads which Dr. Martin has named: Alternative Cellular Energy Pigments. Our bodies are producing these pigments in an attempt to fight off the virus and give our body energy. The only way to reduced the pigment production is to reduce the viral load. And to provide the cells in our body with another source of energy. See Dr. Martin's website at www.s3support.com
Hope this information helps you.
Also, Google Dr. Judith Hand
Dr. Judith Hand traveled to see Dr. Martin and she participated in a clinical trial he was conducting for Morgellons symptoms and it really reduced her symptoms. If you need to contact me, my e-mail address is eandjrbianco@aol.com
Take care
from: Elena Bianco in Pennsylvania

Emerald City Scion said...

Thanks for the info Elena. I am so sorry that you have this disease. It is truly horrible, especially in that it is so often mistaken for a "psychiatric" condition.

I hope you have the opportunity to become as involved as you can with the Morgellons foundation and join with other sufferers to pressure the CDC to release funds for tracking, research and treatment.

I wish you all the best with Dr. Martin's treatments.


CareMan said...

There is an effective treatment for morgellons that thousands of suffers have discovered; NutraSilver.

Most Morgellons victims experience their cognitive issues resolved in about 2 weeks and their lesions are healed in about 3 weeks. You can see evidence of this here: http://brandytwirl.multiply.com/photos/album/1/Morgellons_Pictures_Before_and_After_Treatment

Logic will tell you that putting lotions and creams on your skin will only help temporally. Morgellons must be driven out from the inside. When the critters come out of you please try not to be scared; the good news is that they are leaving!

You can get your life back and go on without thinking about Morgellons disease every waking day of your life.



molly burk said...

there is a strong chance elena that you have primary billoary cirosis (pardon if its spelld wrong) but its a disease of the liver that causes your liver to over produce bile and make it to where your galbladder cannot handle it, all the symptoms you said you have consist with this. my mother was finaly diagnosed 6 years ago and my grandmother just 2 it causes sores to erupt all over your body, having a fibery liquid come out and harden, her hair is brittle and her strength is gone. when she gets sick she really gets sick, ristricting her to bed. she gets chronic nose bleeds, and she has absolutly no engergy. shes seen numerous physicians and nothings helped, shes only able to take 15 medications in the morning and 10 and night to keep her alive, if she doesnt have these meds she will die. the only other solution is a liver transplant and we dont have the money for that. so all we can do is pray her and my grandmother live out the rest of their lives as peaceful as possible

Anonymous said...

Similar symptoms came to me around 8 or 9 years ago. Curiously enough, I did spend a couple weeks working in the San Francisco area.

Anyway, my symptoms completely ruined my 30s and continue to worsen after already taking over a decade of my life and made it hard to date and still single.

My Dad just retired from being a GP/FP physician for 35+ years. He still thinks I'm imagining the stuff streaming, erupting, sometimes almost jumping, out of my skin. The dermatologist I saw twice just blamed it on me scratching the sores and just "advised" that they won't go away until I stop scratching. The second time I saw him after sores went away and came back - I learned that he pretty much had diagnosed the sores as self induced.

So I was treated like I was going crazy - after 30 years of without a hint of psychological issues and a life long track record of highly above average achievement, reliability and physical energy. But, my own doctor dad was suggesting that I get some psychiatric treatment; so, I trusted all the doctors and did just that.

I was quickly put on obscene dosages of meds. (my first psychiatrist that started me on all the meds, has subsequently had is medical license permanently revoked for over prescribing.) Anyway, Since this all started, I've had chronic fatigue so severe that I pretty much have narcolepsy like symptoms; since this all began, what was before a literally flawless record of work performance and history, has since been a stream of nightmarish reprimands, dismissals and heart breaking shame - all do to sleepiness and often falling sound asleep as colleagues and coworkers watched on. Aside from apologies and profound embarrassment, I can't stop it; understandably, it makes me look horribly irresponsible; when it re-occurs, it always results in being treated as a serious hr/discipline measure - - leaving me enduring a nightmare of a situation with work until eventually being all together dismissed.

All this time later, I sit here today with scares and bleeding sores all over, with stuff coming out of my skin that only a complete crazy person would be seeing. I'm single, poor, have been basically shut in for 4 to 5 years now. I had a lot of drive, joy and hope to spare when this all started; honestly, my life became a nightmare almost a decade ago that I've never awoke from - my heart has been crushed. I'm alone with no joy. I am treated either like I have psychological problems or like I am a careless or irresponsible person. I don't even have enough hope or concern left to feel sorry for myself. All hope and drive is gone, and most all of what I once cared about has been to destroyed to ever come back. Yes I feel very sick, but I don't even care anymore.

Jolene everist said...

This morgellons is very real. I stopped going to DR's or talking about it I am an EMT. Every day is s struggle. I can tell those who suffer from this affliction it's real.

Anonymous said...

I am so sick. Please, can someone tell me a doctor who has some understanding of morgellons and how to get me living again. I have 3 kids. Sores everywhere, new ones everyday. I can shower, wipe my face with a tissue, and there will be black fibers, airborne white fluffies, I'm in so much pain and now am categorized in this city. Even escorted out of ER's. My kids have tssted positive for tinea... Their hair is loaded with nests of spiral fibers too, I do hair for a living and have never seen anything like this in 20 years as a professional. Lost half my hair, one eyebrow, and 20 points in vision. Can't complete thought. Can't sleep. This is the loneliest and scariest disease on this wretched earth. I'm afraid I'm gonna lose everything, because the more they label me crazy, the crazier it makes me. Please help. katieyus@hotmail.com