[steve86]

This topic has been posted here before. I happen to be one of the original 800 people registered at morgellons.com. I am fortunate in that my symptoms have greatly abated. The "fibers", although numerous 10 years ago, no longer appear, but the tissue is still trying to heal itself. I question the communicability aspect as no one else in my family has the disease.

The electron microscopy images of the fibers are quite fascinating. Nothing exactly like them had been cataloged previously. I believe that spectroscopy has also been utilized to determine the chemical makeup and results showed the presence of a cellulose-like substance.

From Mary's website:

The unknown fibers associated with skin lesions can be described as coenocytic (aseptate), smooth-walled, branching, filamentous objects. The fibers have been analyzed by FTIR (Fourier Transform Infrared Spectroscopy) and have tentatively been identified as cellulose. Since true fungi are not able to synthesize cellulose, we are currently focused on the Oomycetes class of fungus-like organisms, and filamentous organisms, which have the cellulose synthetase gene.

Incidentally, this isn't your everyday Lyme disease, and the standard Lyme test doesn't usually indicate positive. Mary, the Director of Morgellons, emailed info about specialized Lyme Borrelisosis test :

I have been asked to comment on the lab tests which are being used by many experienced physicians who are treating patients with Borreliosis (Chronic Lyme Disease). This single infectious agent, Borrelia burgdorferi, appears to drastically alter the human immune system to include skin immunity, and permit other infections, such as the Morgellons co-infection.

Several co-infections of Borreliosis are known to complicate the clinical picture of the disease, and may cause people to be refractory, or resistant, to medical treatment for the primary infection.

Since standard Labcorp and Quest Lyme Disease tests do not detect 90% of the people who have this disease, the following two labs are recommended by these physicians. IGeneX, Inc. (Palo Alto, California) is a reference lab with a special focus on Borreliosis and associated co-infections: Click here: IGeneX, Inc. http://www.igenex.com/about.htm

Bowen Research Lab is a research lab, also with special focus on Borreliosis and associated co-infections: Click here: Lyme Testing Information http://www.bowen.org/information.htm

Later, she indicated a preference for Igenex labs.

All of us have encountered the accusations, sometimes veiled, of delusional tendencies. There is a specific diagnosis for it called Delusional Parasitosis. Medical providers tend to become frustrated in their efforts to treat the disease and resort to this name-calling. Many are well-meaning but have difficulty facing failure despite their best efforts. The disease doesn't fit into established medical cubby holes.

Unfortunately for those who cling to the psychological explanations, many of us have saved samples of fibers and other material.

And, no, I don't live anywhere near the Bay Area. I believe that most states have at least a few registered cases, with clusters in California and Texas. We believe that the actual number of those afflicted is many, many times the number of registered at Morgellons.org.

I'm not going to make any more public posts on the topic but will answer FReepmail if anyone has questions.

[Judith Anne]

Thank you VERY MUCH for that extremely informative post. ;-D

[Cicero]

Thanks for the additional details. As you understand, I don't fault the doctors for being mystified by this disease. I fault them for ignoring plain, specific symptoms and instead leaping to the conclusion that their patients were delusional.

I experienced something like that many years ago when I was an undergraduate at Harvard. One evening I got up from an easy chair and had a dizzy spell which almost made me faint. (Later I figured it was the result of getting up too quickly after having sat in the chair reading for a long time. It takes the heart a moment to adjust the blood pressure.)

Anyway, I was worried at the time so the next day I visited the Harvard infirmary and described my symptoms. The doctor started questioning me in what I recognized to be Freudian psychoanalytic terms. Recognizing where he was coming from, I muttered a few answers, backed out of there, and never went back again.

The doctor was obviously a jerk, but a dangerous jerk, because in those days if you were labeled delusional you could be put away. The psychoanalysts thought they were gods. In some ways it's no great improvement to throw crazy people out into the streets, which has been the practice since R. D. Laing and the 1960s, but it's probably better than locking people up on the questionable word of a psychological "expert."

[Perdogg]

Was there a problem this past summer with MRSA???

[Smokin' Joe]

Medical providers tend to become frustrated in their efforts to treat the disease and resort to this name-calling.

It isn't limited to this. Anytime my local doctors can't find what is wrong, they resort to the "It must be your imagination" bit. I have heard several people complain about it, not just me.

I wonder how many people have died of their "imagination"? I just wish they would have the guts to say they don't know if they don't.

[Bon mots]

Did you ever read much into the connection between aspartame(Nutri-sweet) and Lyme disease?

Just curious.
There has been some noise about it. I found a bunch of articles about it yesterday too.