Tuesday, March 01, 2011

A word about Morgellon's Disease

How would you like to awaken one morning to find yourself with these symptoms:

"crawling, biting and stinging sensations; granules, threads or black speck-like materials on or beneath the skin; and/or skin lesions (e.g., rashes or sores) and some sufferers also report systemic manifestations such as fatigue, mental confusion, short term memory loss, joint pain, and changes in vision."

Welcome to the (painful, frustrating) world of Morgellons.

Recently, a dear friend contracted this dread disease, and began her own journey towards healing. It has not been an easy path: for one thing, most of the physicians she's consulted continue to treat this as "all in her mind." Which would be funny, were it not for the very real, obvious symptoms. My friend has agreed to share her story with us, both to enlighten us about the illness, and in hopes of connecting with others who may be suffering from it and (hopefully) resources that have thus far been elusive.

Here's her story:

There is an illness that is emerging in every state of the US and in many other countries. It is very serious and needs to be acknowledged and dealt with by physicians and health care systems. It is called Morgellons. The initial presentation of the illness is often what the CDC (Centers for Disease Control) calls "unidentified dermopathy." This would be skin eruptions, lesions, itchiness, and a sense of something crawling under the skin. American physicians misdiagnose the illness because these symptoms compare to those of "delusional parasitosis," and offer patients antipsychotics as the only treatment. However, if the patients' skin were simply examined with a hand held microscope, physicians would observe the chief diagnostic feature of Morgellons: fibers in the skin of the patients.

In addition to the humiliation and anguish of being diagnosed as psychotic, patients do not have the benefit of a physician who looks beyond the initial presentation of the illness. This is devastating because the illness becomes systemic and can affect multiple organ systems. Few patients get treatment and many become debilitated. Many patients seek out assistance from dozens of doctors, to no avail. Some commit suicide. I have had this illness for five months and have gone through many expensive tests and scans because my doctors are not willing to look at the possibility that the Morgellons has caused: elevated calcium, daily diarrhea, rapid unexplained weight loss, skin eruptions, fungus-like "spores" exuding from my skin.

Unfortunately, the major source of information about Morgellons is the internet. Mixed in with real observations by a few researchers, one finds controversy, conspiracy theory etc. etc. However there are a few sites that are useful for gaining reliable information:

Centers for Disease Control


Morgellons Research

To name a few. One of the best resources I've found is Ginger Savely; Ginger's a Nurse Practitioner who has seen many Morgellons patients and who has done research with 122 subjects. Another researcher is Dr. Kilani, of Clongen Labs. He has done preliminary microscopic research, looking at the organism believed to be causing Morgellons in patients. He has a Ph.D. in infectious diseases from UC Berkely and postdoctoral training at Stanford Univerity Medical School.

I have been searching for help and answers for five months. No physician in my area has any information about this illness. If ANYONE out there knows of credible treatment providers for Morgellons, especially in the midwest, please let me know. If you do a little research for yourself, you will understand the depth of my plea here!

We'd welcome any feedback you might have in the comments.
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