Morgellon's Disease: Mysterious Ecto-Parasites
Transcript of a Four Part Series on CBS 47 Jacksonville News
Original article and video interview may be found HERE
A mysterious skin disease is currently spreading across America, and doctors are searching for answers on how to stop the epidemic.
The disease, called Morgellons 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 Morgellons 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 – Morgellons.
The sickly skin disease has actually been around for centuries. In 1935, an English physician wrote a paper about Morgellons including excerpts from medical journals from the 1600's, describing the disease.
Unfortunately, not much was known then about Morgellons -- 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 Morgellons Research Foundation in Pittsburgh.
Her goal is to get State Health Agencies and the Center for Disease Control (CDC) 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 Morgellons, even though they have no idea how they would have contracted it.
Morgellons 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 Morgellons, 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 Morgellons. 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 Morgellons. 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 Morgellons 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.
Since the CBS47 investigation began digging into the Morgellons mystery, dozens of people on the First Coast have been in contact, desperately looking for help.
One of these people is a nurse who lives in Saint John's Country. Her story is a striking example of how most patients with this bizarre skin disease are shut out by their doctors.
At the end of another exhausting day for Jane Waldoch, "I go to bed at 8:30 , 9 o'clock. I feel like a little old lady and I'm 51 years old."
Jane's fatigue is one of the many symptoms she has of the mystery skin disease, some call Morgellon's.
As a nurse for 24 years, her first reaction was to see a doctor. However, that is where her trouble began.
"I'm absolutely disappointed, disillusioned and very, very angry at the medical community,” says Waldoch.
In the past year, she's been referred to all kinds of doctors.
"Internal medicine, multiple dermatologists, infectious disease, then it went to Rheumatology, Endocrinology, Neurology..." she says.
The doctors saw the sores, but couldn't figure out what was causing them.
"They'd look at me and say, ‘Its dry skin, quit worrying about it.' I'm saying, 'This is the weirdest dry skin I've ever seen in my life!'"
Still, she followed doctors' orders, and took her medications; all two dozen bottles of them.
But none of these drugs worked. So Jane began collecting samples of what was coming out of her skin. She thought it would help her doctors diagnose this bizarre and painful skin condition.
She was wrong.
Doctors took it as a sign that Jane was delusional.
"One of the hallmark clues to delusional parasitosis is what they call the matchbox sign. I guess in the older days people would take their samples in little match boxes to their physician," she says.
Mary Leitao from the Morgellons foundation says patients would do this to prove they were telling the truth.
Jane says she finds fibers that look like crunched up bugs in her sheets every morning. They come from the dozens of sores that cover her arms, legs, back and neck.
"I never thought I'd be in this position, of being embarrassed with who I am, and what I look like."
However, Jane is coming forward, hoping her story will help find a cure, especially for the youngest victims.
Jane is not the only case of the mystery disease found on the first coast. More than 100 people have confirmed they have been suffering from the exact same symptoms, some for as long two decades. Many of them have been diagnosed with delusions of parasitosis.
One research foundation estimates that there are more than 13-hundred people across the country with Morgellons symptoms.
The true number may be a lot higher.
Mary Leitao is a biologist and the executive director of the Morgellons Foundation. The foundation is studying this mysterious skin disease.
They call it Morgellons -- because it looks and sounds exactly like an infection doctors wrote about in the 1600's.
However, 400 years later, these stories don't add up to a diagnosis.
However, researchers may be getting the help they need to find a major breakthrough.
Deborah Altschuler is the president of the National Pediculosis Association in Boston, Massachusetts. The foundation was created to increase awareness about head lice and protect children from pesticides.
Altschuler has been studying a disease that sounds exactly like Morgellons disease.
“People were calling us with very similar symptoms from all over the country,” says Altschuler.
The NPA teamed up with the Oklahoma State Department of Health to study the creepy crawlers.
They took skin samples from 20 patients who claim they have the bugs, but were diagnosed by their doctors as delusional.
Researchers found collembolan, a microscopic critter, in 18 of the 20 patients.
Collembola feed on algae, bacteria and decaying matter. They thrive in wet or damp surroundings, and can be found under leaky kitchen or bathroom sinks, swimming pools, and the soil of potted plants.
The report was published in the journal of the New York Entomological Association. However, it wasn't enough evidence to get the centers for disease control to take action.
The CDC told Altschuler that the collembola was not a danger to humans, even though she says the CDC has shown her no specific study to prove it.
The Morgellons Foundation says it was also shot down by the CDC.
If the research on the collembola is right, researchers still have to figure out how serious these critters are to your health, and they have to find out how to kill them.
To learn more about this mystery disease, visit > www.morgellons.org <
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