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What people say makes us excited::
Last Update: 2/7/2005 3:01:47 PM
http://www.wtev.com/news/reports/story.aspx?content_id=054BB3F6-AD04-44C8-BDA4-15B8ECA03DDD
A mysterious skin disease is currently spreading across Florida, and doctors are searching for answers on how to stop the epidemic.
The disease, called Morgellon’s Disease, is a parasite-like infection that literally makes the infected person’s skin crawl. The disease has already been found in thousands of patients in Florida, Texas and California.
“I would lay in the bed and it felt like an army of ants just crawling over the bed, all over my body,” says one Morgellon’s Disease sufferer.
“It never goes away,” says another. “It doesn’t die, it doesn’t leave.”
What sounds like a science fiction movie is actually real life for the unlucky people who have contracted the disease which leaves painful sores all over the body. The sores ooze blue fibers, white threads and little black specks of sand-like material.
The worst part, patients say, is the creepy and constant sensation of bugs crawling under their skin.
Also discouraging, is the patient’s treatment by doctors, who have little knowledge about the disease, and in specific cases have lacked compassion for the sufferers.
“I was so humiliated from the three doctors that I went to, that I just refused to go back,” said on patient.
Becky Bailey moved out of her Austin, Texas home and into a trailer hoping to escape the bugs that torment her.
"We ripped out our carpet and burned our carpet and furniture and move out into our R-V and they were still one me."
Without medical help, suffering families researched their symptoms on their own by way of the internet. Finally, they were able to put a name to their pain – Morgellon’s.
The sickly skin disease has actually been around for centuries. In 1935, an English physician wrote a paper about Morgellon’s including excerpts from medical journals from the 1600’s, describing the disease.
Unfortunately, not much was known then about Morgellon’s -- and not much has been learned in the more than 400 years since.
What is known, is that many of people who may have it, suffer from these symptoms;
constant itching/crawling sensation, chronic fatigue, brain fog or attention deficit hyperactivity disorder, bipolar disorder, depression, joint swelling or hair loss
What you should do if you have these symptoms, is as puzzling as the disease itself.
One woman in Pittsburgh, PA made it her mission to find out what causes and what will cure this bizarre disease.
Mary Leitao is a biologist and the creator the Morgellon’s Research Foundation in Pittsburgh.
Her goal is to get state health agencies and the center for disease control to study this disease.
“It’s inhumane that these people have been allowed to go home and have been forced to research this day in and day out for years on their own,” says Leitao.
Leitao’s motivations come from her 6 year old boy Drew. Four years ago, he began to feel the itch.
"He started describing bugs. He said, mommy, bugs, and he would scratch."
Then came the sores that shed the fibers. Mary took drew to the doctor and the doctor said it was nothing to worry about.
"I was going to find an answer, or I was going to have to take my life, that's all there was too it."
Doctors don't know what causes the disease, who is at risk and exactly how many people may be suffering. The Morgellon Foundation says they have about 12 hundred people registered on their site. Those are only people who have a computer and happened to find them online.
In Jacksonville, more than a dozen cases have been found.
For Anne Dill, standing in her backyard, looking over the lake is physically and emotionally painful.
This silence and solitude serves as a constant reminder of what her family is facing.
"We're going to lose everything, our house, our dreams," says Dill.
Five years ago, the dills bought their dream home in Lake City. They spent most of their free time at their lake with friends, and thought life was pretty close to perfect.
Then, three years ago, Anne, her husband and their four children all got very sick at the very same time.
They think they have Morgellon’s, even though they have no idea how they would have contracted it.
Morgellon’s is an unusual parasite-like skin disease, which produces irritating sores all over the body.
These sores ooze blue fibers, white threads and little black specks of sand-like material.
The Dills say they're also plagued with a constant, creepy crawling feeling of bugs under their skin.
However, the most agonizing symptom is the chronic fatigue. The Dills are so tired and so weak, they spend nearly all of their time, at home.
The father, Tom Dill is the sickest. Along with the Morgellon’s, he's developed signs of Lou Gehrig's disease. It's a neurological disorder that robbed him of his muscle control. He's now bound to a wheelchair and has trouble speaking. Tom doesn't know if his two conditions are related. That has him worried about his children.
“I don't want to believe that what happened to me, happened to them."
But answers are hard to come by. In fact, doctors tell them the "bugs" they feel and sores they see, are only in their minds. In medical terms, they are delusional parasitosis.
"I don't know how a doctor couldn't see that, it's ridiculous, I can see it, I know there's something there, I'm like a freshman in high school and I know that there's something wrong."
Doctor Hardesh Garg is an internal medicine specialist in Jacksonville. He isn't surprised by the reaction the dills have been getting from doctors.
"A lot of times, not all of us, who feel like, if it doesn't exist in my medical book, it really doesn't exist and it must be a figment of your imagination," says Garg.
Doctor Garg has never seen a patient with Morgellon’s. However, he says this skin condition needs to be studied.
“Until we know what's causing it, can't say if it's infectious or not or how dangerous it is."
No doctors on the First Coast or Florida could be found who know anything about Morgellon’s. However, not all hope is lost. One medical professional in Austin, Texas may have found a clue to the Morgellon’s mystery.
Ginger Savely is a nurse practitioner who specializes in treating the tick borne Lyme disease. She also has first hand experience with the mystery disease.
"Right now I think I have about twenty eight Morgellon’s patients," says Savely.
According to Savely, the anti-biotics she gives to patients with lyme are also working on some Morgellon’s patients.
But this treatment is also unproven, and since doctors don't know if it’s contagious, the Dills say their home is now their prison.
So, the Dills spend a lot of quality time together. Five year old Hanna has been one of the dill's secrets to survival, as her love for singing songs keeps the family entertained.
Recently researchers have been uncovered who have just published a study on an unknown skin disease with the exact same symptoms.
It is promising research that points to a critter that could be lurking in your home, and research the Dills may feel that every family should look into.
©2004 Clear Channel Television-Jacksonville. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
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