Morgellons disease pictures

Monday, 2 May 2011



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

What is Agnosia

Agnosia is a rare disorder characterized by an inability to recognize and identify objects or persons. People with agnosia may have difficulty recognizing the geometric features of an object or face or may be able to perceive the geometric features but not know what the object is used for or whether a face is familiar or not. Agnosia can be limited to one sensory modality such as vision or hearing. For example, a person may have difficulty in recognizing an object as a cup or identifying a sound as a cough. Agnosia can result from strokes, dementia, developmental disorders, or other neurological conditions. It typically results from damage to specific brain areas in the occipital or parietal lobes of the brain. People with agnosia may retain their cognitive abilities in other areas.

Is there any treatment?

Treatment is generally symptomatic and supportive. The primary cause of the disorder should be determined in order to treat other problems that may contribute to or result in agnosia.

What is the prognosis?

Agnosia can compromise quality of life.

Adie Syndrome

The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and the credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.

The information in NORD's Rare Disease Database is for educational purposes only. It should never be used for diagnostic or treatment purposes. If you have questions regarding a medical condition, always seek the advice of your physician or other qualified health professional. NORD's reports provide a brief overview of rare diseases. For more specific information, we encourage you to contact your personal physician or the agencies listed as "Resources" on this report.




Synonyms of Adie Syndrome
Adie's Pupil
Adie's Syndrome
Adie's Tonic Pupil
Holmes-Adie Syndrome
Papillotonic Psuedotabes
Tonic Pupil Syndrome
Disorder Subdivisions



General Discussion
Adie Syndrome is a rare neurological disorder affecting the pupil of the eye. In most patients the pupil is dilated (larger than normal) and slow to react to light on nearby objects. In some patients, however, the pupil may be constricted (smaller than normal) rather than dilated. Absent or poor reflexes are also associated with this disorder. Adie Syndrome is neither progressive nor life threatening, nor is it disabling.

Ablepharon Macrostomia Syndrome

Ablepharon Macrostomia Syndrome is an extremely rare inherited genetic disorder that is characterized by different physical abnormalities that affect the head and facial areas, skin, fingers, and the genitalia. The people affected by AMS may also have malformations of the nipples and the abdominal wall.

Some of the characteristics of AMS are: lack of or under-developed eyelids(Ablepharon), absence of eyelashes and eyebrows, wide fish-like mouths(Macrostomia), and/or incompletely developed, low set ears. Eye abnormalities may occur due to the ablepharon. People with AMS can also have abnormally sparse, thin hair; coarse, dry, thickened skin with excessive folds. They may have webbed fingers with limited extension of the fingers and may have malformations of the external genitalia. In some cases of AMS, the individual has absent or very small nipples and/or protrusion of portions of the large intestine through an opening in the abdominal wall (abdominal or ventral hernia)

The cause of Ablepharon Macrostomia Syndrome is not known, but some of the cases suggest that AMS may be inherited as an autosomal recessive genetic trait.

Children and infants with AMS may experience delays in language development. Some children may show signs of mild mental retardation and others may have normal intelligence

What is abetalipoproteinemia?

Abetalipoproteinemia is an inherited disorder that affects the absorption of dietary fats, cholesterol, and fat-soluble vitamins. People affected by this disorder are not able to make certain lipoproteins, which are particles that carry fats and fat-like substances (such as cholesterol) in the blood. Specifically, people with abetalipoproteinemia are missing a group of lipoproteins called beta-lipoproteins. An inability to make beta-lipoproteins causes severely reduced absorption (malabsorption) of dietary fats and fat-soluble vitamins (vitamins A, D, E, and K) from the digestive tract into the bloodstream. Sufficient levels of fats, cholesterol, and vitamins are necessary for normal growth, development, and maintenance of the body's cells and tissues, particularly nerve cells and tissues in the eye.

The signs and symptoms of abetalipoproteinemia appear in the first few months of life. They can include failure to gain weight and grow at the expected rate (failure to thrive); diarrhea; abnormal star-shaped red blood cells (acanthocytosis); and fatty, foul-smelling stools (steatorrhea). Other features of this disorder may develop later in childhood and often impair the function of the nervous system. Disturbances in nerve function may cause affected people to eventually develop poor muscle coordination and difficulty with balance and movement (ataxia). Individuals with this condition may also develop an eye disorder called retinitis pigmentosa, in which progressive degeneration of the light-sensitive layer (retina) at the back of the eye can cause vision loss. Adults in their thirties or forties may have increasing difficulty with balance and walking. Many of the signs and symptoms of abetalipoproteinemia result from a severe vitamin deficiency, especially a deficiency of vitamin E.

How common is abetalipoproteinemia?
Abetalipoproteinemia is a rare disorder with approximately 100 cases described worldwide.

What genes are related to abetalipoproteinemia?
Mutations in the MTTP gene cause abetalipoproteinemia. The MTTP gene provides instructions for making a protein called microsomal triglyceride transfer protein, which is essential for creating beta-lipoproteins. These lipoproteins are necessary for the absorption of fats, cholesterol, and fat-soluble vitamins from the diet and the efficient transport of these substances in the bloodstream. Most of the mutations in the MTTP gene lead to the production of an abnormally short microsomal triglyceride transfer protein, which prevents the normal creation of beta-lipoproteins in the body. A lack of beta-lipoproteins causes the nutritional and neurological problems seen in people with abetalipoproteinemia.

Read more about the MTTP gene.

How do people inherit abetalipoproteinemia?
This condition is inherited in an autosomal recessive pattern, which means both copies of the gene in each cell have mutations. The parents of an individual with an autosomal recessive condition each carry one copy of the mutated gene, but they typically do not show signs and symptoms of the condition.

Where can I find information about diagnosis, management, or treatment of abetalipoproteinemia?
These resources address the diagnosis or management of abetalipoproteinemia and may include treatment providers.

Gene Tests: Abetalipoproteinemia
MedlinePlus Encyclopedia: Bassen-Kornzweig syndrome
MedlinePlus Encyclopedia: Malabsorption
MedlinePlus Encyclopedia: Retinitis pigmentosa
MedlinePlus Encyclopedia: Stools - floating
You might also find information on the diagnosis or management of abetalipoproteinemia

What is Huntington's Disease?

Huntington's disease (HD) results from genetically programmed degeneration of brain cells, called neurons, in certain areas of the brain. This degeneration causes uncontrolled movements, loss of intellectual faculties, and emotional disturbance. HD is a familial disease, passed from parent to child through a mutation in the normal gene. Each child of an HD parent has a 50-50 chance of inheriting the HD gene. If a child does not inherit the HD gene, he or she will not develop the disease and cannot pass it to subsequent generations. A person who inherits the HD gene will sooner or later develop the disease. Whether one child inherits the gene has no bearing on whether others will or will not inherit the gene. Some early symptoms of HD are mood swings, depression, irritability or trouble driving, learning new things, remembering a fact, or making a decision. As the disease progresses, concentration on intellectual tasks becomes increasingly difficult and the patient may have difficulty feeding himself or herself and swallowing. The rate of disease progression and the age of onset vary from person to person. A genetic test, coupled with a complete medical history and neurological and laboratory tests, helps physicians diagnose HD. Presymptomic testing is available for individuals who are at risk for carrying the HD gene. In 1 to 3 percent of individuals with HD, no family history of HD can be found.

Is there any treatment?

Physicians prescribe a number of medications to help control emotional and movement problems associated with HD. In August 2008 the U.S. Food and Drug Administration approved tetrabenazine to treat Huntington’s chorea (the involuntary writhing movements), making it the first drug approved for use in the United States to treat the disease. Most drugs used to treat the symptoms of HD have side effects such as fatigue, restlessness, or hyperexcitability. It is extremely important for people with HD to maintain physical fitness as much as possible, as individuals who exercise and keep active tend to do better than those who do not.

What is the prognosis?

At this time, there is no way to stop or reverse the course of HD. Now that the HD gene has been located, investigators are continuing to study the HD gene with an eye toward understanding how it causes disease in the human body.

What research is being done?

Scientific investigations using electronic and other technologies enable scientists to see what the defective gene does to various structures in the brain and how it affects the body's chemistry and metabolism. Laboratory animals are being bred in the hope of duplicating the clinical features of HD so that researchers can learn more about the symptoms and progression of HD. Investigators are implanting fetal tissue in rodents and nonhuman primates with the hope of understanding, restoring, or replacing functions typically lost by neuronal degeneration in individuals with HD. Related areas of investigation include excitotoxicity (over-stimulation of cells by natural chemicals found in the brain), defective energy metabolism (a defect in the mitochondria), oxidative stress (normal metabolic activity in the brain that produces toxic compounds called free radicals), tropic factors (natural chemical substances found in the human body that may protect against cell death).

Phenylketonuria

Phenylketonuria (PKU) is a rare condition in which a baby is born without the ability to properly break down an amino acid called phenylalanine.

CausesPhenylketonuria (PKU) is inherited, which means it is passed down through families. Both parents must pass on the defective gene in order for a baby to have the condition. This is called an autosomal recessive trait.

Babies with PKU are missing an enzyme called phenylalanine hydroxylase, which is needed to break down an essential amino acid called phenylalanine. The substance is found in foods that contain protein.

Without the enzyme, levels of phenylalanine and two closely-related substances build up in the body. These substances are harmful to the central nervous system and cause brain damage.

SymptomsPhenylalanine plays a role in the body's production of melanin, the pigment responsible for skin and hair color. Therefore, infants with the condition often have lighter skin, hair, and eyes than brothers or sisters without the disease.

Other symptoms may include:

Delayed mental and social skills
Head size significantly below normal
Hyperactivity
Jerking movements of the arms or legs
Mental retardation
Seizures
Skin rashes
Tremors
Unusual positioning of hands
If the condition is untreated or foods containing phenylalanine are not avoided, a "mousy" or "musty" odor may be detected on the breath and skin and in urine. The unusual odor is due to a build up of phenylalanine substances in the body.

Exams and TestsPKU can be easily detected with a simple blood test. Most states require a PKU screening test for all newborns. The test is generally done with a heelstick shortly after birth.

If the initial screening test is positive, further blood and urine tests are required to confirm the diagnosis.

TreatmentPKU is a treatable disease. Treatment involves a diet that is extremely low in phenylalanine, particularly when the child is growing. The diet must be strictly followed. This requires close supervision by a registered dietitian or doctor, and cooperation of the parent and child. Those who continue the diet into adulthood have better physical and mental health. “Diet for life” has become the standard recommended by most experts. This is especially important before conception and throughout pregnancy.

Phenylalanine occurs in significant amounts in milk, eggs, and other common foods. The artificial sweetener NutraSweet (aspartame) also contains phenylalanine. Any products containing aspartame should be avoided.

A special infant formula called Lofenalac is made for infants with PKU. It can be used throughout life as a protein source that is extremely low in phenylalanine and balanced for the remaining essential amino acids.

Taking supplements such as fish oil to replace the long chain fatty acids missing from a standard phenylalanine-free diet may help improve neurologic development, including fine motor coordination. Other specific supplements, such as iron or carnitine, may be needed.

Outlook (Prognosis)The outcome is expected to be very good if the diet is closely followed, starting shortly after the child's birth. If treatment is delayed or the condition remains untreated, brain damage will occur. School functioning may be mildly impaired.

If proteins containing phenylalanine are not avoided, PKU can lead to mental retardation by the end of the first year of life.

Possible ComplicationsSevere mental retardation occurs if the disorder is untreated. ADHD (attention-deficit hyperactivity disorder) appears to be the most common problem seen in those who do not stick to a very low-phenylalanine diet.

When to Contact a Medical ProfessionalCall your health care provider if your infant has not been tested for PKU. This is particularly important if anyone in your family has the disorder.

PreventionAn enzyme assay can determine if parents carry the gene for PKU. Chorionic villus sampling can be done on the pregnant women to screen the unborn baby for PKU.

It is very important that women with PKU closely follow a strict low-phenylalanine diet both before becoming pregnant and throughout the pregnancy, since build-up of this substance will damage the developing baby even if the child has not inherited the defective gene.

Alternative NamesPKU; Neonatal phenylketonuria

Bookmark and Share