Morgellons Disease, a mysterious disease marked by strange skin eruptions, if finally getting attention from researchers. The U.S. Centers for Disease Control and Prevention (CDC) is paying California-based Kaiser Permanente $338,000 to test and interview patients suffering from Morgellons, a bizarre and recently emerging skin disorder. The CDC began the collaborative study to determine whether Morgellons is a legitimate illness or patient imagination. Both Kaiser and the CDC will gather information about the illness, including common symptoms, possible causes, and risk factors and will look only at patients in northern California, the state with the highest number of self-reported cases.
Biochemist Vitaly Citovsky of Stony Brook University has been studying Morgellons for a year. A range of symptoms, including non-healing skin eruptions, characterizes the disorder, called Morgellons by some and fiber disease by others. Patients report stringy, fibrous, and seed-like granules and/or black speck-like material emerging from lesions. Lesions range from minor to disfiguring and may not heal. “It’s not recognized officially as a medical condition,” Citovsky said Monday. “Our dermatology department does not recognize it. Many people who are affected have bizarre, inconceivable symptoms.” Citovsky said doctors have no idea whether to categorize it as a disease with a specific cause, a syndrome with several components, or an emotional problem.
Patients also report odd skin sensations, such as stinging, crawling, and biting; some cite joint pain, Chronic Fatigue Syndrome, and Fibromyalgia; others cite problems with concentration and memory, including changes in cognition, memory loss, mood disturbance, and neurological manifestations. A few report live worms or fibrous material bursting through their skin.
Morgellons is a poorly understood condition a growing number of physicians believes to be a chronic infectious disease, but which is not yet fully recognized by the medical community. “Many consider it a psychiatric problem,” Citovsky said. “However, there might be something that they develop,” he added, whose laboratory analyses discovered the chemical make-up of the fibers. “They’re made up of polysaccharides, sugars; long chains of sugar molecules. The problem is the people who deny the existence of the disease. They say this is lint or dirt that people find on their skin, but it’s not dirt, it’s not lint, it’s not twigs. But on the other hand, it is not a living creature.”
Citovsky received samples of the fibrous material last year from San Francisco physician Raphael Stricker. Stricker wrote the first paper on Morgellons, along with biologist Mary Leitao, whose son suffered from the disorder and who named the disorder after she found a medical history book reference on a 17th century disease in which fibrous material emerged from people’s skin. She now runs a Morgellons foundation in Pennsylvania. Stricker sent samples of the material to Citovsky’s lab because he thought the Stony Brook biochemist could produce answers. Citovsky received a small grant from Morgellons Research Foundation and said the CDC rebuffed him when he offered to share his research, hoping to join the effort. “I said, ‘We’re doing a little work on this, and do you want to know what we’re doing?’ They said no.”
At this time, the cause of Morgellons is unknown and there is no cure.
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May 14th, 2009 at 10:10 pm
MY NAME IS STEPHANIE AND I FEEL THAT I HAVE MORGELLONS DISEASE. ABOUT A YEAR AGO I STARTED GETTING BITING, CRAWLING SENSATIONS,AND LESIONS ON MY BODY. I HAVE BEEN TO DERMATOLOGISTS AND DOCTORS ONLY TO END UP WITH NO CURE. THE DOCTORS GAVE ME ANTIBIOTICS, BACTERIAL WASHES, AND SCABIES CREAM PERMETHERIAN, NOTHING HAS WORKED. I USED TO HAVE HEALTHY SKIN AND USE TO TAN DURING THE SUMMER NOW I DONT TAN OR DO ANYTHING I HAVE LESIONS ON MY BACK, STOMACH, AND ARMS. I CAN GUARENTEE YOU THAT I’M NOT DOING THIS TO MYSELF I CRY ALMOST EVERY DAY ABOUT THIS CONDITION AND I AM DEEPLY DEPRESSED ABOUT IT. I AM 33 YEARS OLD AND HAVE HAD THIS FOR ABOUT A LITTLE OVER A YEAR NOW, FROM BIRTH TILL 32 I HAD NO SYMPTOMS OR LEGIONS OR SPECS COMING OUT OF MY SKIN.
November 14th, 2009 at 11:32 pm
hey i hope you are better, i am struggling with this too as is my wife and 2 yr. old baby.
good luck
December 17th, 2009 at 6:39 am
That is not very much money for research. It is the same amount for the last few years. Maybe the gov. should give them more ??? ??? We’ve got it too…..
January 5th, 2010 at 6:32 pm
Dear Stephanie and All Morgellons Sufferers:
I am completely cured of the horrific and debilitating disease and have been for years, now. However, I literally suffered with it for over a year and I know what all of you are or has been going through with the morbid sensations, the black things and worst of all, the doctors who not only have no clue as to what this thing is, but many and most don’t care and I am advising you now (to save you the anquish I went through) to not bring attention to it once it’s been made clear that a doctor you are seeing believes you to be one of “those” crazy nutjobs.
The fact is, they are lazy and ignorant. Simple as that. I can not give medical advice, but this is what I would recommend to anyone who would ask me.
Order drugs online, move and leave anything behind you believe may have infection in any way, shape or form. I moved twice and threw away my furniture (that I loved) and many things I didn’t want to chance. I will also give advice for how to cover up the sores as best as possible, too.
1.) Buy prescription medications. The drugs I am about to mention can be purchased on line should you run into a hard time obtaining prescriptions from your doctors. They are pretty strong and include one anti-parasitic and one anti-biotic. They are as follows:
~Stromectol. Be very careful. The dosage goes by your total weight. (How much you weigh determines your dosage). It’s a one-time dosage, which covers you for a duration of 6 months to a year before redosing. This is an anti-parasitic.
It can’t hurt to take it unless you have a condition or take something that can negatively interact with it. However, DON’T TAKE MORE THAN IS DIRECTED AND DON’T TAKE AGAIN UNTIL INSTRUCTED THAT IT IS OKAY TO DO SO.
ALSO, I don’t know what the age requirements are or what pre-existing conditions apply that can have adverse reactions if taken.
~Cipro. This is an antibiotic and is VERY strong. Take as instructed and then stop until directed that it is safe to re-dose again same as first.
For covering up the lesions, I recommend Smart Cover. You can order it online and it will fill in the multi-dimensional areas of the sores created by this illness- especially on face, neck and anywhere that is visible to other people that you want to cover up.
My prayers are with all of you.
~Jenny~