Post by bugsy on Jan 22, 2008 15:15:25 GMT -5
tinyurl.com/2v4gak
Brigid Schulte
Washington Post Staff Writer
Tuesday, January 22, 2008; 2:00 PM
Reports of a new disease -- characterized by strange fibers creeping below the skin -- are coming in from around the world. Mainstream doctors say it's delusional, but sufferers of so-called Morgellons disease say their symptoms are very real. And government researchers are starting to listen.
Reporter Brigid Schulte, whose story on this mysterious disease appeared in this week's issue of Washington Post Magazine fields questions and comments. Joining her in the conversation are dermatology professor Jeffrey Meffert and Morgellons Research Foundation board member Douglas Buckner.
Submit your questions and comments before or during today's discussion.
Brigid Schulte is a reporter for The Post's Metro section. Jeffrey Meffert is an associate clinical professor of dermatology at the University of Texas Health Science Center in San Antonio.
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Knoxville, MD: About 7 years ago this happened to me. I thought it was a spider bite and I was injected with silk. I was pulling out these strands of fibers out of my skin. Although I don't recall it being multi-colored. It was more beije and looked like silk or cotton fibers. Felt the same way too. It was very painful. I went to the ER and the nurse was as creeped out as I was but the doctor said it was my imagination and I was given antibiotics and sent home. Could this creep up again some day?
Dr. Jeffrey Meffert: I doubt it. Those were probably collagen fibers from the wound and protein filaments that will accumulate in any wound open for awhile. If you have healed, you're clear
Dr. Douglas Buckner: Internet diagnosis? Could be collagenous fibers?
Dr. Jeffrey Meffert: Could be. I don't know for sure. I'm making a guess based on 27 years of patient care and 15 as a dermatologist from hundreds (thousands?) of wounds of various types I've taken care of over the years. Do you think they were something else? Based on what?
Dr. Jeffrey Meffert: By the way, re "internet diagnosis". I enrolled in the MRF database when I described, without embellishment, my younger son's mild eczema symptoms and asked if it could be Morgellon's. Not surprisingly, the answer was "yes".
Dr. Douglas Buckner: Am aware of your enrollment with the MRF and "could be" is a reasonable consideration. Who diagnosed your son with eczema?
Dr. Jeffrey Meffert: Who diagnosed my son with eczema? I'm a dermatologist, dude. IMHO, I think I'm qualified. Who at the MRF diagnosed him as possible Morgellons?
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Prescott, Ariz: Good story. I first started hearing about this phenomenon driving late night listening to the 'Coast to Coast' radio show.
I always thought that it would be easy to find out exactly what these fibers that come out of people are if you watched someone who claimed to have the problem for a couple days, and see if the fibers show up. You could probably do it real cheap and unobtrusively using internet cameras these days as well. Then wait for them to say the fibers are there and then run in and collect them. Could do it a more traditional way as well in a hospital. IS anything like this planned?
Also, I am ascientist who deals with things like SEM's and mass spectrometry, why is there so much problem finding out what this material is?
Dr. Jeffrey Meffert: The material, when analyzed, is reported to be a variety of things. Cellulose (cotton), protein (collagen fibers from the wound), autoflourescing fibers (synthetics and processed cotton), something which melts above 1000 degrees (fiberglass). The patients itch, no doubt, but we need to get past the whole "fiber disease" gig.
Dr. Douglas Buckner: Fibers as in Morgellons is new and has not been seen before in modern medicine or written about in the medical books. If something does not exist in the med books or the journals then it does not exist with the close minded, time pressed doctors. This is called Semmelweis Reflex, "the immediate dismissal of new scientific information without thought or examination."
Dr. Jeffrey Meffert: Is there a reverse Semmelweiss effect where we are required to believe anything someone says until the established community disproves it? That is one of my complaints with the mrf. You have turned the scientific method on it's head. We must believe that fiber disease is a (new? ancient? you've said both in different posts today) disease entity on your say so until I can prove you wrong.
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Washington, D.C.: Given how little researchers know about the numerous varieties of living organisms that manage to get by on healthy skin (and that apparently live on, in, and amongst the skin's layers), isn't it just possible that Morgellons have always been with us, feasting upon our flesh?
Isn't it also possible that the problem is not one of introduction of a virulent new strain, but rather the absence in sufferers of that which would normally have kept Morgellons in check?
In addition to the factors already mentioned in common amongst sufferers, might there also be other factors even more subtle?
If there are higher populations than normal of Morgellons in sufferers, what is it that may be keeping down populations of other organisms (bacterium, viruses, mites, and the like) which would normally keep Morgellons' growth in check?
For example, do any of these sufferers regularly use an anti-bacterial soap which while destroying 'bad' bacteria may also be destroying 'good' bacteria that feed on Morgellons and inhibit their growth and/or reproduction?
Also, what other subtle external environmental factors or internal body chemistry factors are there which might lead to a decrease on sufferers' skin of naturally growing 'blocking' agents that would inhibit Morgellons' reproductive success?
Dr. Jeffrey Meffert: When I graduated from medical school, there was no such thing as HIV disease. By the time I finished my family training we knew something about it. I am open to the possibility, if not the probability that there are pathogenic organisms out there that we have not identified yet because our "microscopes" are not good enough. My objection is the tendency here to cast aside the scientific method and define the condition using anecdotes and vague unprovable theories. Your comment about soaps is an issue with a condition called tinea versicolor in which the use of antibacterial soaps allows the proliferation and overgrowth of a nusiance causing yeast.
Dr. Douglas Buckner: Elements in the environment today are different than only a few years ago. Pesticides, herbicides, solvents, antibacterial soaps and sprays and even perfumed air fresheners are everywhere. Environmental factors could contribute to the decline in the integrety of the skin as a defense mechanism and could lower the immune system. Such people would seem to be open to infections by things previously not considered pathogens. Thus a/many NEW conditions/syndromes/diseases.
Dr. Jeffrey Meffert: Lower immune system again. Why do you feel morgellon's sufferer's have depressed immune systems? As I said in another post. Most of my itchiest patients have OVERACTIVE immune systems. There are studies that the allergists do which can characterize congenital and acquired immunedeficiencies. Have you any data regarding such testing in morgellon's patients? Do you plan to do so? This "suppressed immune system" meme plays into the hands of outright charlatans on the internet who are happy to sell morgellon's patients a variety of bogus immune system tonics...at a price of course.
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Washington, DC: In 2001 I had a series of panic attacks, was diagnosed with Generalized Anxiety Disorder, went on anti-anxiety meds for about 18 months and did cognitive-based therapy + exercise for about 4 years total. I am a former hypochondriac (I imagined problems as diverse as tooth decay and automotive break failure) and my doctor, therapist and aerobic coach cured me.
In an online anxiety group, a person with Morgellons joined in order to deal with Morgellons-related anxiety. This person used the most derogative terms to describe anxiety and delusions- continually saying she wasn't "crazy" and creating bizarre conspiracy theories about psychologists, therapists and doctors. Her level of insults to the psychiatric community showed pure stubborn prejudice and bigotry and no common sense. But it was her lack of personal reflection that was really the issue. Even though she was dealing with anxiety, she refused to stop drinking starbucks and soda, eating chocolate, she wouldn't relax and sleep, she wouldn't exercise, she wouldn't eat healthy. All of these issues, she said, weren't aggravating her condition, they were things she couldn't change BECAUSE of her condition. She had been a super-achiever who clearly suffered some kind of break when she caught her husband cheating and her company began to fail- classic high-pressure nervous breakdown. Her symptoms meant her husband had to pay a lot more attention to her and if she couldn't work because of the disease she could shut down her company without admitting failure. I really felt she reveled in the importance the disease gave her even as she hated the symptoms.
In reading some of the other blogs she linked to, I saw the same stories repeating themselves- not just red and blue fibers that don't show up in photos, but the same bigots calling people bettering themselves through therapy "crazy!" The same high-pressure exhibiting anxious behavior from multiple high-caffeine drinks each day. The same people looking for caring, more special treatment from family members who ignored them. The same people who were vacuuming several times a week, working in their garden until it was "perfect" and trying to control every aspect of their lives. The same predicating events like business failure, death of a family member. I mean, these stories are all online!
I was shocked to see almost identical stories repeated in the Sunday Magazine! I'd love to hear from a current person who took anti-anxiety meds for one or two years or tried therapy for two years and still had a problem.
Dr. Jeffrey Meffert: We have found that a variety of medications can help chronic itching sensations including anti-anxiety medications and some of the newer anti-depressants. Full blown delusional parasitosis responds to several medications which are in the "anti-psychotic" family although sufferers of this condition are not actually psychotic.
Dr. Douglas Buckner: If a person is suffering from a psychiatric condition they certainly need to seek help and medication for such from a psychiatrist, not a dermatologist.
Dr. Jeffrey Meffert: Or a phD. Or a nurse practitioner. Or perhaps even an occupational medicine physician. Physicians are allowed to prescribe any medications they have the training for. If a dermatologist is uncomfortable prescribing a medication, they should not. Just as I may prescribe birth control pills for acne therapy, I prescribe anti-depressants and other psychotropic medications to my patients who have conditions that might respond to them. I do not treat frank depression or psychosis because that is not my field of expertise.
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Northeast Washington, DC: Was there any concern that, in publishing this story, you would increase the number of patients with these symptoms? If there is a psychological aspect to this disease, then it seems that implanting the idea of Morgellon's could cause people to develop the symptoms. Is there any evidence that those with the disease had previously heard or read about it?
Dr. Jeffrey Meffert: I'm not sure that anyone who would read this hasn't already heard of the condition. The MRF has been very effective in getting these stories onto local TV and all over the internet. I think the fact that all these patients, with their widely varying stories and symptoms, all think they have this thing called Morgellons illustrates well that there isn't any one specific syndrome.
Dr. Douglas Buckner: People in different regions will of course have secondary infections which differ. However, the classic symptoms so often present. The secondary conditions are possibly a result of supressed immune systems which does cloud the issue.
Dr. Jeffrey Meffert: And how have you determined that these patients have "supressed immune systems"? Many of my itchiest patients actually have conditions in which their immune system, rather than being supressed, is overactive. (Hence the steroids and other immune-suppressing medications we give to such patients at time)
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Friendly, MD: Does this disease present itself in domesticated or wild animals? What is most amazing to me is the lab work done by a forensic lab and not identifying the fibers as manmade or cotton,silk, etc. Why wasn't this type of lab work done initially?
Dr. Jeffrey Meffert: Animals have their own mites and itchy skin disorders. I have never read of an animal infected with Morgellons which would be surprising since one of the conjectured sources for the "infection" is that it is a zoonotic infection which has crossed over to humans. Comment, MRF?
Dr. Douglas Buckner: Many people with Morgellons have pets, especially cats and dogs. They report that their pets show similar symptoms. The Morgellons Research Foundation presently has a group of researchers which includes doctors, vets, parasitiologist and microbiologist who are working together in combined efforts investigating Morgellons Disease. At this point in time I would not expect there to be references to such in the literature.
Dr. Jeffrey Meffert: If you want your data taken seriously, you need to get it in the mainstream literature rather than vaguely referenced on the MRF website or the personal websites of your associates. If the reason you can't get it published is because it does not stand up to scientific scrutiny...well that says something, doesn't it.
Dr. Douglas Buckner: Maybe the CDC will help out in this respect.
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Minneapolis Minn: Can you talk more about why the fibers haven't been identified yet? This seems strange, given modern science.
Thanks.
Dr. Jeffrey Meffert: The problem is that the fibers have been identified as many different things. Depending upon which report, they are either cotton (cellulose), synthetic fibers, collagen from the patient's wound, or even fiberglass. This is why I object to the idea that "fiber disease" is a single condition.
Dr. Douglas Buckner: Attempts to identify the fibers have been made by researchers. The fibers were compared to thousands of known fibers in police and FBI databases and there were NO matches. They were also evaluated in a gas spectrometer and they did not vaporize at 700 degrees C. The Morgellons fibers are not textile fibers. I have often wondered how a derm could identify them as textile fibers without a sound textile knowledge base and not taking the time to magnify or send fibers to a "lab".
Dr. Jeffrey Meffert: I always magnify the fibers. I examine them under the microscope and using an instrument called a dermlite which cross-polarizes and magnifies. They are clothing fibers stuck in scabs or or bits of the the patients own collagen. You forget, I do scrapings on people all day for fungus, scabies, herpes,etc. I see fibers all day. I also do ultraviolet exams on patents all day for fungus and a condition called erythrasma. I see autoflourescing fibers all day on my patients clothing. "Not a match". To what? The answer you get completely depends on how you ask the question
Dr. Douglas Buckner: The fibers were not a match to anything in the databases. I am glad to hear that you acturally do scrappings and look; too many doctors do not.
Dr. Jeffrey Meffert: Most primary care doctors are not adequetely trained in dermatology. They do the best they can with what they were taught. But yes, I scrape and examine everybody who needs it and will microscopically examine everything a patient brings in. Every once and awhile I get a piece of a flea or ant which lets me give the patient some very specific advice about exterminators and what to do with their pets.
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Fairfax, Va: It's not clear to me why so many people seem to have an investment in believing that Morgellon's doesn't exist. If patients from different parts of the country are producing fibers that a police lab says don't match any known material, that seems like pretty compelling evidence by itself of a real problem. Two questions: 1/ Have any autopsies been conducted on the bodies of Morgellon's suffers? The article mentioned the distress of the funeral home workers; did a medical examiner have a chance to study the body? If so, what were the findings? 2/ Is Morgellon's found anywhere outside the United States, and if so how do foreign doctors deal with it?
Dr. Jeffrey Meffert: Morgellon's is found, not surprisingly, everywhere there is internet access. People itch everywhere. Local doctors treat the known, diagnosable diseases of the their region as best they can and move on.
Dr. Douglas Buckner: This is not an internet disease. Morgellons existed long before it was mentioned on the internet. The internet later became involved when people started trying to help themselves. The most common expression I heard was "thank goodness I found you. I thought I was the only one that had this"
Dr. Jeffrey Meffert: The original, historic morgellon's reference sounds most like dracunculosis (aka "guinea worm") a tropical disease in which a nematodal parasite bursts through the skin to lay eggs in water. Scary stuff and can still be found in north africa and southwest asia but it doesn't make fibers. "Morgellon's Disease" as conceived by Ms. Letao and defined by the MRF has only existed as long as high speed internet.
Dr. Douglas Buckner: No, the condition which was given the name Morgellons for consistancy in communication existed before the name Morgellons was given. I know the disease existed in 1997.
Dr. Jeffrey Meffert: I had internet in 1997, didn't you?
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Washington, D.C.: One of the things that bothered me was the suggestion by one of the doctors that this was a disease because so many people shared the similar experience. It reminded me of another article in the Washington Post Magazine some time ago about people who believed the were being monitored by the government through implants. Just because many people share a delusion doesn't mean it's true.
Dr. Jeffrey Meffert: The common factor is that these patients itch terribly. If I see 30 patients in a clinic day, 10 of them itch terribly. The patients all have something, it's just not all the same thing.
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Alexandria, Va: I'm curious as to whether any of the sufferers you interviewed or heard about did try psychiatric treatment? I can't imagine being in that situation (and whatever the cause, they do feel this, I'm sure), but why reject a possible treatment, even if it doesn't line up with what you think is happening?
Dr. Jeffrey Meffert: There are psychotropic medications which have use in a variety of patient conditions which may be lumped under the aegis of morgellon's. These patients, even those with true delusional paristosis, will not benefit from analytic psychotherapy although relaxation techniques and self-hypnosis may provide some benefit.
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Rockville, Md : Can the disease be caused by a parasitic nematode? The nematode is carried into the skin by mite bite. Mites carry tropical worms from the south north and infect humans when birds leave nests in attics, etc. Please comment.
Dr. Jeffrey Meffert: There are a variety of nematodal diseases which affect humans. Many have a animal reservoir (hookworm, ascaris), some insect vectors (dracunculus, onchocerciasis), some human to human (pinworm, strongyloides). The fibers, as described by the MRF, not nematodal. The nematodal diseases that cause wandering nematodes in the skin (loa-loa, onchocerciasis) are tropical diseases and only found in San Francisco or Austin if someone is visiting from those parts
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Los Angeles, Calif: Question for Mr Buckner: Clearly there must be SOME people who think they have Morgellons, who actually have some kind of delusion regarding fibers, and their sores are the result of scratching themselves. How does the Morgellons Research Foundation distinguish those who are delusional from those who are not. Is there some criteria?
Dr. Jeffrey Meffert: My impression is that they do not. The fringe morgellon's sites which discuss chemtrails and fibers from meteorites certainly do not.
Dr. Douglas Buckner: There is no way for the MRF to diagnose someone over the internet. That is why it is so important that they find a doctor who will take the time to listen, examine, research each patients condition/symptoms.
The Morgellons Research Foundation just like the American Cancer Society has fringe elements consisting of desperate people trying the explain the unknown.
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Oklahoma City, Okla: I am a 47 year old female ,who has had this terrible disease since 1999. My question is there have been countless numbers of calls to the CDC, as well as countless studies and surveys submitting to various colleges collecting info. It's obvious the numbers are growing fast. Why is it the CDC still refuses to give out documented numbers of cases, that are proven to be real. They still claim they need further investigation to be able to supply this information. Second why is Kaiser the chosen one to do research , when some beleive that Lyme disease may be connected to Morgellans? Kaiser does not acknowlege the existence of chronic Lyme disease, nor will insurance for meds cover this. Ending...why has the CDC kept this such a secret, when everyone knows there have been more calls this year alone with regards to Morgellans . We the people have had to alert physicians, congressmen, healthe dept. , because they were turning their backs.....I want to know why? Is there something they are hiding?
~Bugsy
Brigid Schulte
Washington Post Staff Writer
Tuesday, January 22, 2008; 2:00 PM
Reports of a new disease -- characterized by strange fibers creeping below the skin -- are coming in from around the world. Mainstream doctors say it's delusional, but sufferers of so-called Morgellons disease say their symptoms are very real. And government researchers are starting to listen.
Reporter Brigid Schulte, whose story on this mysterious disease appeared in this week's issue of Washington Post Magazine fields questions and comments. Joining her in the conversation are dermatology professor Jeffrey Meffert and Morgellons Research Foundation board member Douglas Buckner.
Submit your questions and comments before or during today's discussion.
Brigid Schulte is a reporter for The Post's Metro section. Jeffrey Meffert is an associate clinical professor of dermatology at the University of Texas Health Science Center in San Antonio.
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Knoxville, MD: About 7 years ago this happened to me. I thought it was a spider bite and I was injected with silk. I was pulling out these strands of fibers out of my skin. Although I don't recall it being multi-colored. It was more beije and looked like silk or cotton fibers. Felt the same way too. It was very painful. I went to the ER and the nurse was as creeped out as I was but the doctor said it was my imagination and I was given antibiotics and sent home. Could this creep up again some day?
Dr. Jeffrey Meffert: I doubt it. Those were probably collagen fibers from the wound and protein filaments that will accumulate in any wound open for awhile. If you have healed, you're clear
Dr. Douglas Buckner: Internet diagnosis? Could be collagenous fibers?
Dr. Jeffrey Meffert: Could be. I don't know for sure. I'm making a guess based on 27 years of patient care and 15 as a dermatologist from hundreds (thousands?) of wounds of various types I've taken care of over the years. Do you think they were something else? Based on what?
Dr. Jeffrey Meffert: By the way, re "internet diagnosis". I enrolled in the MRF database when I described, without embellishment, my younger son's mild eczema symptoms and asked if it could be Morgellon's. Not surprisingly, the answer was "yes".
Dr. Douglas Buckner: Am aware of your enrollment with the MRF and "could be" is a reasonable consideration. Who diagnosed your son with eczema?
Dr. Jeffrey Meffert: Who diagnosed my son with eczema? I'm a dermatologist, dude. IMHO, I think I'm qualified. Who at the MRF diagnosed him as possible Morgellons?
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Prescott, Ariz: Good story. I first started hearing about this phenomenon driving late night listening to the 'Coast to Coast' radio show.
I always thought that it would be easy to find out exactly what these fibers that come out of people are if you watched someone who claimed to have the problem for a couple days, and see if the fibers show up. You could probably do it real cheap and unobtrusively using internet cameras these days as well. Then wait for them to say the fibers are there and then run in and collect them. Could do it a more traditional way as well in a hospital. IS anything like this planned?
Also, I am ascientist who deals with things like SEM's and mass spectrometry, why is there so much problem finding out what this material is?
Dr. Jeffrey Meffert: The material, when analyzed, is reported to be a variety of things. Cellulose (cotton), protein (collagen fibers from the wound), autoflourescing fibers (synthetics and processed cotton), something which melts above 1000 degrees (fiberglass). The patients itch, no doubt, but we need to get past the whole "fiber disease" gig.
Dr. Douglas Buckner: Fibers as in Morgellons is new and has not been seen before in modern medicine or written about in the medical books. If something does not exist in the med books or the journals then it does not exist with the close minded, time pressed doctors. This is called Semmelweis Reflex, "the immediate dismissal of new scientific information without thought or examination."
Dr. Jeffrey Meffert: Is there a reverse Semmelweiss effect where we are required to believe anything someone says until the established community disproves it? That is one of my complaints with the mrf. You have turned the scientific method on it's head. We must believe that fiber disease is a (new? ancient? you've said both in different posts today) disease entity on your say so until I can prove you wrong.
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Washington, D.C.: Given how little researchers know about the numerous varieties of living organisms that manage to get by on healthy skin (and that apparently live on, in, and amongst the skin's layers), isn't it just possible that Morgellons have always been with us, feasting upon our flesh?
Isn't it also possible that the problem is not one of introduction of a virulent new strain, but rather the absence in sufferers of that which would normally have kept Morgellons in check?
In addition to the factors already mentioned in common amongst sufferers, might there also be other factors even more subtle?
If there are higher populations than normal of Morgellons in sufferers, what is it that may be keeping down populations of other organisms (bacterium, viruses, mites, and the like) which would normally keep Morgellons' growth in check?
For example, do any of these sufferers regularly use an anti-bacterial soap which while destroying 'bad' bacteria may also be destroying 'good' bacteria that feed on Morgellons and inhibit their growth and/or reproduction?
Also, what other subtle external environmental factors or internal body chemistry factors are there which might lead to a decrease on sufferers' skin of naturally growing 'blocking' agents that would inhibit Morgellons' reproductive success?
Dr. Jeffrey Meffert: When I graduated from medical school, there was no such thing as HIV disease. By the time I finished my family training we knew something about it. I am open to the possibility, if not the probability that there are pathogenic organisms out there that we have not identified yet because our "microscopes" are not good enough. My objection is the tendency here to cast aside the scientific method and define the condition using anecdotes and vague unprovable theories. Your comment about soaps is an issue with a condition called tinea versicolor in which the use of antibacterial soaps allows the proliferation and overgrowth of a nusiance causing yeast.
Dr. Douglas Buckner: Elements in the environment today are different than only a few years ago. Pesticides, herbicides, solvents, antibacterial soaps and sprays and even perfumed air fresheners are everywhere. Environmental factors could contribute to the decline in the integrety of the skin as a defense mechanism and could lower the immune system. Such people would seem to be open to infections by things previously not considered pathogens. Thus a/many NEW conditions/syndromes/diseases.
Dr. Jeffrey Meffert: Lower immune system again. Why do you feel morgellon's sufferer's have depressed immune systems? As I said in another post. Most of my itchiest patients have OVERACTIVE immune systems. There are studies that the allergists do which can characterize congenital and acquired immunedeficiencies. Have you any data regarding such testing in morgellon's patients? Do you plan to do so? This "suppressed immune system" meme plays into the hands of outright charlatans on the internet who are happy to sell morgellon's patients a variety of bogus immune system tonics...at a price of course.
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Washington, DC: In 2001 I had a series of panic attacks, was diagnosed with Generalized Anxiety Disorder, went on anti-anxiety meds for about 18 months and did cognitive-based therapy + exercise for about 4 years total. I am a former hypochondriac (I imagined problems as diverse as tooth decay and automotive break failure) and my doctor, therapist and aerobic coach cured me.
In an online anxiety group, a person with Morgellons joined in order to deal with Morgellons-related anxiety. This person used the most derogative terms to describe anxiety and delusions- continually saying she wasn't "crazy" and creating bizarre conspiracy theories about psychologists, therapists and doctors. Her level of insults to the psychiatric community showed pure stubborn prejudice and bigotry and no common sense. But it was her lack of personal reflection that was really the issue. Even though she was dealing with anxiety, she refused to stop drinking starbucks and soda, eating chocolate, she wouldn't relax and sleep, she wouldn't exercise, she wouldn't eat healthy. All of these issues, she said, weren't aggravating her condition, they were things she couldn't change BECAUSE of her condition. She had been a super-achiever who clearly suffered some kind of break when she caught her husband cheating and her company began to fail- classic high-pressure nervous breakdown. Her symptoms meant her husband had to pay a lot more attention to her and if she couldn't work because of the disease she could shut down her company without admitting failure. I really felt she reveled in the importance the disease gave her even as she hated the symptoms.
In reading some of the other blogs she linked to, I saw the same stories repeating themselves- not just red and blue fibers that don't show up in photos, but the same bigots calling people bettering themselves through therapy "crazy!" The same high-pressure exhibiting anxious behavior from multiple high-caffeine drinks each day. The same people looking for caring, more special treatment from family members who ignored them. The same people who were vacuuming several times a week, working in their garden until it was "perfect" and trying to control every aspect of their lives. The same predicating events like business failure, death of a family member. I mean, these stories are all online!
I was shocked to see almost identical stories repeated in the Sunday Magazine! I'd love to hear from a current person who took anti-anxiety meds for one or two years or tried therapy for two years and still had a problem.
Dr. Jeffrey Meffert: We have found that a variety of medications can help chronic itching sensations including anti-anxiety medications and some of the newer anti-depressants. Full blown delusional parasitosis responds to several medications which are in the "anti-psychotic" family although sufferers of this condition are not actually psychotic.
Dr. Douglas Buckner: If a person is suffering from a psychiatric condition they certainly need to seek help and medication for such from a psychiatrist, not a dermatologist.
Dr. Jeffrey Meffert: Or a phD. Or a nurse practitioner. Or perhaps even an occupational medicine physician. Physicians are allowed to prescribe any medications they have the training for. If a dermatologist is uncomfortable prescribing a medication, they should not. Just as I may prescribe birth control pills for acne therapy, I prescribe anti-depressants and other psychotropic medications to my patients who have conditions that might respond to them. I do not treat frank depression or psychosis because that is not my field of expertise.
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Northeast Washington, DC: Was there any concern that, in publishing this story, you would increase the number of patients with these symptoms? If there is a psychological aspect to this disease, then it seems that implanting the idea of Morgellon's could cause people to develop the symptoms. Is there any evidence that those with the disease had previously heard or read about it?
Dr. Jeffrey Meffert: I'm not sure that anyone who would read this hasn't already heard of the condition. The MRF has been very effective in getting these stories onto local TV and all over the internet. I think the fact that all these patients, with their widely varying stories and symptoms, all think they have this thing called Morgellons illustrates well that there isn't any one specific syndrome.
Dr. Douglas Buckner: People in different regions will of course have secondary infections which differ. However, the classic symptoms so often present. The secondary conditions are possibly a result of supressed immune systems which does cloud the issue.
Dr. Jeffrey Meffert: And how have you determined that these patients have "supressed immune systems"? Many of my itchiest patients actually have conditions in which their immune system, rather than being supressed, is overactive. (Hence the steroids and other immune-suppressing medications we give to such patients at time)
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Friendly, MD: Does this disease present itself in domesticated or wild animals? What is most amazing to me is the lab work done by a forensic lab and not identifying the fibers as manmade or cotton,silk, etc. Why wasn't this type of lab work done initially?
Dr. Jeffrey Meffert: Animals have their own mites and itchy skin disorders. I have never read of an animal infected with Morgellons which would be surprising since one of the conjectured sources for the "infection" is that it is a zoonotic infection which has crossed over to humans. Comment, MRF?
Dr. Douglas Buckner: Many people with Morgellons have pets, especially cats and dogs. They report that their pets show similar symptoms. The Morgellons Research Foundation presently has a group of researchers which includes doctors, vets, parasitiologist and microbiologist who are working together in combined efforts investigating Morgellons Disease. At this point in time I would not expect there to be references to such in the literature.
Dr. Jeffrey Meffert: If you want your data taken seriously, you need to get it in the mainstream literature rather than vaguely referenced on the MRF website or the personal websites of your associates. If the reason you can't get it published is because it does not stand up to scientific scrutiny...well that says something, doesn't it.
Dr. Douglas Buckner: Maybe the CDC will help out in this respect.
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Minneapolis Minn: Can you talk more about why the fibers haven't been identified yet? This seems strange, given modern science.
Thanks.
Dr. Jeffrey Meffert: The problem is that the fibers have been identified as many different things. Depending upon which report, they are either cotton (cellulose), synthetic fibers, collagen from the patient's wound, or even fiberglass. This is why I object to the idea that "fiber disease" is a single condition.
Dr. Douglas Buckner: Attempts to identify the fibers have been made by researchers. The fibers were compared to thousands of known fibers in police and FBI databases and there were NO matches. They were also evaluated in a gas spectrometer and they did not vaporize at 700 degrees C. The Morgellons fibers are not textile fibers. I have often wondered how a derm could identify them as textile fibers without a sound textile knowledge base and not taking the time to magnify or send fibers to a "lab".
Dr. Jeffrey Meffert: I always magnify the fibers. I examine them under the microscope and using an instrument called a dermlite which cross-polarizes and magnifies. They are clothing fibers stuck in scabs or or bits of the the patients own collagen. You forget, I do scrapings on people all day for fungus, scabies, herpes,etc. I see fibers all day. I also do ultraviolet exams on patents all day for fungus and a condition called erythrasma. I see autoflourescing fibers all day on my patients clothing. "Not a match". To what? The answer you get completely depends on how you ask the question
Dr. Douglas Buckner: The fibers were not a match to anything in the databases. I am glad to hear that you acturally do scrappings and look; too many doctors do not.
Dr. Jeffrey Meffert: Most primary care doctors are not adequetely trained in dermatology. They do the best they can with what they were taught. But yes, I scrape and examine everybody who needs it and will microscopically examine everything a patient brings in. Every once and awhile I get a piece of a flea or ant which lets me give the patient some very specific advice about exterminators and what to do with their pets.
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Fairfax, Va: It's not clear to me why so many people seem to have an investment in believing that Morgellon's doesn't exist. If patients from different parts of the country are producing fibers that a police lab says don't match any known material, that seems like pretty compelling evidence by itself of a real problem. Two questions: 1/ Have any autopsies been conducted on the bodies of Morgellon's suffers? The article mentioned the distress of the funeral home workers; did a medical examiner have a chance to study the body? If so, what were the findings? 2/ Is Morgellon's found anywhere outside the United States, and if so how do foreign doctors deal with it?
Dr. Jeffrey Meffert: Morgellon's is found, not surprisingly, everywhere there is internet access. People itch everywhere. Local doctors treat the known, diagnosable diseases of the their region as best they can and move on.
Dr. Douglas Buckner: This is not an internet disease. Morgellons existed long before it was mentioned on the internet. The internet later became involved when people started trying to help themselves. The most common expression I heard was "thank goodness I found you. I thought I was the only one that had this"
Dr. Jeffrey Meffert: The original, historic morgellon's reference sounds most like dracunculosis (aka "guinea worm") a tropical disease in which a nematodal parasite bursts through the skin to lay eggs in water. Scary stuff and can still be found in north africa and southwest asia but it doesn't make fibers. "Morgellon's Disease" as conceived by Ms. Letao and defined by the MRF has only existed as long as high speed internet.
Dr. Douglas Buckner: No, the condition which was given the name Morgellons for consistancy in communication existed before the name Morgellons was given. I know the disease existed in 1997.
Dr. Jeffrey Meffert: I had internet in 1997, didn't you?
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Washington, D.C.: One of the things that bothered me was the suggestion by one of the doctors that this was a disease because so many people shared the similar experience. It reminded me of another article in the Washington Post Magazine some time ago about people who believed the were being monitored by the government through implants. Just because many people share a delusion doesn't mean it's true.
Dr. Jeffrey Meffert: The common factor is that these patients itch terribly. If I see 30 patients in a clinic day, 10 of them itch terribly. The patients all have something, it's just not all the same thing.
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Alexandria, Va: I'm curious as to whether any of the sufferers you interviewed or heard about did try psychiatric treatment? I can't imagine being in that situation (and whatever the cause, they do feel this, I'm sure), but why reject a possible treatment, even if it doesn't line up with what you think is happening?
Dr. Jeffrey Meffert: There are psychotropic medications which have use in a variety of patient conditions which may be lumped under the aegis of morgellon's. These patients, even those with true delusional paristosis, will not benefit from analytic psychotherapy although relaxation techniques and self-hypnosis may provide some benefit.
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Rockville, Md : Can the disease be caused by a parasitic nematode? The nematode is carried into the skin by mite bite. Mites carry tropical worms from the south north and infect humans when birds leave nests in attics, etc. Please comment.
Dr. Jeffrey Meffert: There are a variety of nematodal diseases which affect humans. Many have a animal reservoir (hookworm, ascaris), some insect vectors (dracunculus, onchocerciasis), some human to human (pinworm, strongyloides). The fibers, as described by the MRF, not nematodal. The nematodal diseases that cause wandering nematodes in the skin (loa-loa, onchocerciasis) are tropical diseases and only found in San Francisco or Austin if someone is visiting from those parts
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Los Angeles, Calif: Question for Mr Buckner: Clearly there must be SOME people who think they have Morgellons, who actually have some kind of delusion regarding fibers, and their sores are the result of scratching themselves. How does the Morgellons Research Foundation distinguish those who are delusional from those who are not. Is there some criteria?
Dr. Jeffrey Meffert: My impression is that they do not. The fringe morgellon's sites which discuss chemtrails and fibers from meteorites certainly do not.
Dr. Douglas Buckner: There is no way for the MRF to diagnose someone over the internet. That is why it is so important that they find a doctor who will take the time to listen, examine, research each patients condition/symptoms.
The Morgellons Research Foundation just like the American Cancer Society has fringe elements consisting of desperate people trying the explain the unknown.
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Oklahoma City, Okla: I am a 47 year old female ,who has had this terrible disease since 1999. My question is there have been countless numbers of calls to the CDC, as well as countless studies and surveys submitting to various colleges collecting info. It's obvious the numbers are growing fast. Why is it the CDC still refuses to give out documented numbers of cases, that are proven to be real. They still claim they need further investigation to be able to supply this information. Second why is Kaiser the chosen one to do research , when some beleive that Lyme disease may be connected to Morgellans? Kaiser does not acknowlege the existence of chronic Lyme disease, nor will insurance for meds cover this. Ending...why has the CDC kept this such a secret, when everyone knows there have been more calls this year alone with regards to Morgellans . We the people have had to alert physicians, congressmen, healthe dept. , because they were turning their backs.....I want to know why? Is there something they are hiding?
~Bugsy
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