Mystery Illness Baffles Doctors; Frustrates Patients

foxreno.com ^ | POSTED: 7:43 pm PST February 6, 2005 UPDATED: 8:03 pm PST February 7, 2005 | Staff

[Lee Heggy]

SAUSALITO -- Is an unknown disease hitting the Bay Area or is it just a case of mass delusion? If you ask intensive care nurse Cindy Casey she'll tell you that the mystery disease is very real and very painful.

[Bon mots]

Plum Island seems to operate in a loophole. Originally, the law was well thought out... that the facility must be on an Island...

But then they built it on an island just 10 miles from the Connecticut coast between New York and Boston, and less than a mile from the Long Island coast. That doesn't seem too swift at all... it should be in a more hostile environment like one of the Aleutians, or someplace more remote and hostile to any escaped creatures.

So far, within ten miles of this facility we have had the first cases of:

• Lyme Disease (the first case was about 100 yards from where the Plum Island ferry docks)
• West Nile Encephalitis started in Suffolk County Long Island and the first human case was in the Queens (after the power outage)
• Malaria - A boy scout camp near Plum Island had to be closed to a mysterious malaria outbreak (Also just after the power outage there)
• Foot and Mouth Disease outbreak in animals kept just outside the facility...(1978)
• Dead birds found in and around the facility
• Damage during Hurricane Bob (1991)

Do we need this in our most densely populated region?
One of the Muslim terrorists seized by our own government had maps of Plum Island. Guess what he was planning...

[najida]

Maybe the Borrelia burgdorferi think you taste icky.

[eyespysomething]

gag, I was eating lunch.

Was.

[Judith Anne]

I know men who have had lyme disease. In our neck of the woods, it's carried by deer ticks, the symptoms are clear: Fever, joint pain, rash. It's treated with antibiotics to prevent systemic spread. Loggers and hunters get it all the time. Some people end up with a permanent case of joint damage.

[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.

[PennsylvaniaMom]

Lyme is very real. I know of several people both male and female that have had it. Very common to areas (such as mine) that have a high deer population.

[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."

[steve86]

I have read R. D. Laing and his cronies as well.

[Perdogg]

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

[Smokin' Joe]

bump

[Smokin' Joe]

Can you post a link to the article on Crohn's Disease?

[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.

[steve86]

I have so far out-lived two doctors who had treated this condition and I'm starting to wonder...

[MonaMars]

Your brilliant display of logic tells me all I need to know about you.

[GOPJ]

Maybe it's a virus that attacks any weakened area - for some it would be this, for others, that.

Mysterious symptoms that vary from patient to patient. "

[Smokin' Joe]

MIght also be a parasite, with symptoms dependant on what part of the body is infested.

[GOPJ]

The way medical schools are structured, they unintentionally create "doctor personalities" in their students: Smart, capable, insensitive, jerky, paranoid, obsessive, and grandiose.

You were lucky it wasn't worse.

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."

[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.

[wideminded]

I've spent countless hours in the woods in the army and hunting. I've been eaten alive by ticks of all species.

How come I don't have Lyme disease?

I don't believe it has spread across the entire country yet. It's a big deal in the Northeast. I have not heard of it being a problem here in the Northwest. Here are some maps and a chart on the state-by-state incidence.

BTW there are other serious diseases spread by ticks.