ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Prime Time Medical Mysteries: Morgellons.. .Wed. Aug. 9th on ABC
Dear Friends,
There will be a TV program about Morgellons this Wednesday. Morgellons is a skin condition that some people with Lyme disease get. You can learn more about Morgellons at www.morgellons.org . Please read the message below from a friend. Some Lyme patients develop Morgellons after soil or dirty water gets into an open sore or break in the skin. Tell your doctors and other health care professionals about this program.
Kathy White, Secretary Lyme Association of Greater Kansas City, Inc. [email protected]
Be sure to watch Prime Time Medical Mysteries on this Wednesday night August 9th, on ABC.....the mystery skin disease especially.. .....it's been a long time in the making...and finally has made national news. Our medical research organization thanks Ken Cowles ABC 20/20 investigative, behind-the-scenes reporter, for all of his hard work in finally bringing this to the attention of the world. It's been 4 years of hard work, research, interviewing, physical examinations, and history from thousands of people who are afflicted with this very mysterious disease.
On Wednesdays nights, "Primetime" provides viewers with clues to help them make their own online diagnosis in a real case.
At the end of each hour, viewers learn how well they scored.
Tune in to "Primetime" this Wednesday, Aug. 9, at 9 p.m. for a special two-hour broadcast and try to solve the weekly "Medical Mystery." During the show log-on to ABCNews.com to vote.
On this week's show, you'll hear the story of a beautiful woman for whom the phrase "something smells fishy" is not just some nose-wrinkling words, it's the agonizing story of her life.
Last week on "Medical Mysteries," viewers had the opportunity to weigh in during "Primetime" to help solve the medical mystery suffered by a college swimmer who suffered from fatigue and an unquenchable thirst.
Here are a couple of other "Medical Mysteries" to watch for in upcoming weeks:
A blind man who plays basketball, rides bikes, even rollerblades.
An in utero "fight to the death" between identical twins unless risky in utero surgery can save them both.
Senior producers are Ann Reynolds and Terence Wrong, and the executive producer is Rudy Bednar.
Mysterious Colored Fibers Are Growing on Their Skin Like Hair -- It's a Medical Mystery.
August 8, 2006 - - Brandi Koch of Clearwater Beach, Florida, says she feels like she's "living in a horror movie." She claims to have colored fibers coming out of her skin.
Brandi is married to Billy Koch, a former major league baseball player who was one of only a handful of pitchers who could throw the ball over a hundred miles an hour. Koch's life was good, until one day in the shower, she noticed something strange -- tiny fibers running through her skin.
Watch "Medical Mysteries" Wednesday at 9 p.m. [EDT]
"The fibers look like hair and they're different colors," Koch said.
Koch says she knows that what she's experiencing "sounds crazy," but it's true. "If I had a family member call me up and say, 'I have this stuff,' I'd say, 'I'm sending a straight jacket over, you need some help.'"
Anne Dill describes a similar condition. Looking at Dill's life, it appears like she's living an idyllic life in a home on Florida's Lake Mary. Her three daughters excel in sports and are straight A students.
But life in the Dill household is far from perfect. Anne's 40-year- old husband Tom died in January and she believes his death was due to a contagious illness that has infected her entire family.
Dill describes her family's skin: "There's this fibrous material. It's in layers." Dill says the skin on their hands is particularly bad, very swollen and itchy. She says it feels like there are bugs crawling underneath their skin.
Consulting Doctors
Dr. Greg Smith of Gainesville, Georgia, has been a pediatrician for the past 28 years. He claims a fiber is coming out of his big toe and he has video footage to prove it. "It felt like somebody stuck a pin in my toe and wiggled it and it just continued to hurt," Smith said. He said he never thought he had bugs. "I've certainly had those crawling sensations, and the fibers which come out of the skin are really bizarre, and really odd."
When Koch, Dill, and Smith consulted doctors, they received diagnoses that they say were wrong or dismissive. Dill's doctor told her to stop scratching -- even though many of her sores were in places she says she could not reach.
Koch went to the Mayo Clinic where doctors didn't believe the fibers that she brought them had grown from her body. "I saw the infectious disease doctor and I showed him some samples that I had and he snickered. I can't go through another doctor blowing me off or looking at me like I'm crazy. I know I'm not," said Koch.
Smith -- a doctor himself -- was handed over to a hospital psychiatrist when he went to the emergency room complaining of a fiber in his eye. He admits that he, too, would be skeptical if a patient had come to him with the same story. "I would wonder if they'd taken their medicine that day. It makes no sense. It's totally bizarre. It's something that -- just telling the story is so outlandish on the face of it -- that no one would believe it," Smith said.
Dr. Vincent DeLeo, chief of dermatology at New York's St. Lukes- Roosevelt Medical Center, weighed in on what he'd say to someone who came to him with this condition. "I don't think this is any different than many patients I've seen who have excoriations and believe that there is something in their skin causing this."
DeLeo says the open lesions are a result of scratching the skin.
But for biologist Mary Leitao of Surfside Beach, South Carolina, medical skepticism was something she would refuse to accept.
Relying on Your Own Research
Her son Drew was just two years old when Leitao noticed an odd sore on his lip that would not heal.
"He very simply said 'bugs,' and he pointed to his lips," said Leitao.
Leitao never expected to find herself at the center of a medical storm. But when her son complained about that strange sore, the biologist, who once ran the electron microscope at Massachusetts General Hospital, did what any scientist would do. She took a closer look. "What I saw were bundles of fibers, balls of fibers," Leitao said. "There was red and blue." Even stranger, they glowed under UV light.
Armed with research, Leitao took her son to a doctor at one of the country's leading hospitals. He dismissed her tale of fibers and wrote to her pediatrician saying that her son needed Vaseline for his lips and that his mother needed a thorough psychiatric evaluation.
Undaunted, Leitao began pouring through the medical literature looking for clues. What she discovered was a 17th century reference to a strange disease with "harsh hairs" called "the morgellons."
She named the strange fibers Morgellons Disease and put the information on a Web site, morgellons.org. Since then, more than 4,500 people have contacted Leitao, claiming they have Morgellons- type symptoms. The name has stuck and was even featured on the television show "ER."
But do these fibers grow from inside the body -- as Morgellons patients believe -- or do they come from the external environment -- a kind of lint -- as the medical skeptics say?
Searching for an Answer
Forensic scientist Ron Pogue at the Tulsa Police Crime Lab in Oklahoma checked a Morgellons sample against known fibers in the FBI's national database. "No, no match at all. So this is some strange stuff," Pogue said. He thinks the skeptics are wrong. "This isn't lint. This is not a commercial fiber. It's not."
The lab's director, Mark Boese, says the fibers are "consistent with something that the body may be producing." He adds, "These fibers cannot be manmade and do not come from a plant. This could be a byproduct of a biological organism."
While they wait for evidence that will hopefully convince the medical community to take them seriously, some Morgellons sufferers wear pink bracelets that say, simply, "Fortitude."
Dill says she looks at pictures of her family from just four years ago and finds them unrecognizable. "My kids have to see not only their dad but their mom disintegrating, and that's gotta be really scary."
posted
In one way the name Morgellons has unified people who have had similar symptoms, but on the other hand it has confused people who think this is an "old" disease.
quote: . . . Ms. Leitao creates a Web site (Morgellons Research Foundation) devoted to what she believes is a new disease, which she names Morgellons after an obscure 17th century French reference to black hairs . . .
This is from an interesting article in the Post-Gazette:
Mom fights for answers on what's wrong with her son - Sunday, July 23, 2006 - By Chico Harlan, Pittsburgh Post-Gazette
posted
The segment was good, but didn't mention the lyme connection.
It did show the usual skeptical "It's all in their head" doctor, once again portrayed by a MD who hasn't examined for fibers.
I refer to their method of examination as a TFP exam.
(Ten-Foot-Pole)
But, the segment wouldn't be complete without showing what patients face with the disbelieving MDs - (typically Derms, ID, or ER doctors.)
The people who gave interviews have my admiration and thanks for their courage and determination.
Sometimes media coverage briefly mentions Lyme, sometimes there is no mention. I am not sure why - if it is the journalist's choice or that of those who are interviewed.
Diana
Posts: 13 | From Antelope Valley, California | Registered: Jul 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
I watched the program, and noticed that they did not mention Lyme Disease.
They had a very nice close up shot of removing a fiber from a sore.
I wonder if the "bugs crawling" feeling that some people have described might be a paresthesia from low levels of magnesium.
I also noticed that the neuro symptoms the Morgellan's patients had were very similar to those of Lyme Disease.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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American Journal of Clinical Dermatology 2006, Volume 7, Issue
authored by: Ginger Savely, NP, Mary Leitao and Raphael B. Stricker, MD
The Mystery of Morgellons Disease: Infection or Delusion?
(it's a five-page pdf file)
Diana
Posts: 13 | From Antelope Valley, California | Registered: Jul 2006
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
HI Tabers,
I will buy this part of your post:
quote:If there is Morgellons then it caused by some new strain of parasite or bacteria or whatever. And this strain of whatever it is appears to be prevalent in certain areas of the country.
I would be interested to hear how much of a connection there is to this thing and Lyme. I recall it was the Lyme patients wo seemed to report this first.
I would have no problem wrapping my brain around Morgellons as a co-infection that favors the southern states.
Sad to see the muscle-wasting in several of the patients who were featured in the Primetime piece.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
I feel for these people. This actually looks worse than Lyme. And the poor family who lost their father is also getting lots of "don't come near me" from the community. I can't say that I do not blame them as it does seem this may be contagious. But very sad for this family nonetheless. Way too many unknowns. I fear for those kids if their mom keeps deteriorating and they lose her as well.
Hats off to those who came out to tell their story. Considering the fact that the second story on the same show dealt with a really bizarre situation where people wanted their limbs cut off so they could be whole, it seemed to equate Morgellons with things like that.
Then went as far as to make an issue of the man who did later admit that he was "crazy" when he put his legs in dry ice to damage them so the doctors would have to cut them off.
But the dermatologist who was such an AHole reminded me of the many DUCKS I saw. Some doctors simply refuse to have an open mind. Afraid to admit that there are unknowns out there, putting on a face that they know EVERYTHING.
Will be very interesting to see what the CDC does with this.
They have done very little to help Lyme patients in spite of the fact that Lyme, etc has been around for years and years and certainly affects many more people than Morgellons.
Posts: 2275 | From NC | Registered: Oct 2000
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posted
Speculation is one thing, but science is something else entirly.
Morgellon's must be considered a disease until proven otherwise per the scientific results of labratory testing and the common rationale of any other explanation so far yet excluded.
So, Tabers, I thank you for your point of view, as it adds to the discussion of Morgellon's and broadens everyone's viewpoints through sharing your own.
Here is something that needs to be underscored however: Several tests, from different samples from people who have had no contact were tested against every known fibrous material man made or naturally made in the a very large database, namley the CSI database for the FBI.
There were no known matches, and supringingly, the results for these fibers were strikingly similar and repeatable.
For these people to have all procured fibers completely unknown to all of science independly defies common sence and the burdon of proof lies not with those who suffer but those who claim the disease is not real.
As it stands, the lab results are very compelling. Until an incredibly good explanation can be made to uncover why and how these people were able to independly discover a new material previously unknown to science, and happen to have discovered the same unknown fibrous material as opposed to many different unknown fibers, then Morgellon's is a disease until proven otherwise.
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
However, I remain open to any ideas regarding the connection with Lyme Disease. Clearly, more science must be done before any definitive answers are made connecting Lyme Disease and Morgellon's.
My personal feeling is that the two are connected, that Morgellon's is not a new disease, but rather a variant of Acrodermatitis Chronica as commonly seen in Europe.
The geographical explanation is best explaned by the high prevalence of genetic heterogenious distrubution of borrelia burgdorferri in the southern states and the relativly unresearched tick vector seemingly most prevalent in this part of the country, the lone star tick.
At this point, it is enough for us to ask Lyme patients to be on the lookout for any of these fibers, and if so, to get in touch with the OSU school of medicine.
We need reproducable science, and at the same time, there is no need to cause histeria. Everyone should be aware of Morgellon's and should make sure they don't dismiss any strange rashes as it may be an important contribution to science, albiet there may be no difinitive answers for the current patient, perhaps some satisfaction can be gleamed from the possible bennifit to future patients your contribution will provide.
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
One reason I think it is important to consider Lyme is that people like me had just the itchy crawly scalp / hair symptoms, as well as a whole checklist of neurological symptoms and other Lyme symptoms.
I have been on the Morgellons message board for over a year, and the NUSPA board before that. There are a lot of us with just those symptoms - strange hairs. But not the colored fibers.
Some people on the Morgellons board periodically mention that quite a few have tested positive for Lyme. But until I read the article by Ginger Savely, Mary Leitao and Dr. Stricker I didn't make the connection to myself. More people on the Morgellons board are also making the Lyme connection these past few months.
I wasted over 2 years trying to figure out what was going on at various boards. Focusing on what could be the cause, and I'm no scientist.
I saw an old friend of mine and mentioned that I was wondering about Lyme disease (I had already made an appointment with a LLMD to be tested but was waiting 6 months for it to come up) and she mentioned that she had a friend in Texas with Lyme. I asked if I could possibly talk to her friend on the phone and ask some questions about Lyme disease.
Within an hour I was talking to our mutual friend. When I mentioned the strange hair and scalp symptoms the friend knew exactly what I was talking about and said that her LLMD had started her on Doxycycline (sp?) and those feelings went away - only every now and then a tiny itch. I should have started on the Lyme board a couple of years ago!
How many people are stuck on various message boards without knowing that they should be tested for Lyme?
A friend I made on the Morgellons board has many symptoms of advanced Lyme disease. She decided to get tested for Lyme. She went to a local doctor who knows nothing about Lyme, had her blood drawn, sent to Igenex, and was told on the phone that she didn't have Lyme.
I've asked her to get the actual results and post them here for help in figuring out what the tests meant. She is now considering getting a LLMD after talking to several people about Lyme.
One problem of little mention of Lyme in connection with Morgellons is that people are getting treated by non-LLMD's and getting prescriptions for Prednisone for their aches and pains. They continue to eat carbs and sugars.
Having been mocked and turned away by medical professionals, some are self-treating for torturous skin sensations, parasitic co-infections, and continuing to spend time searching for common factors in getting this.
As more people on the Morgellons board go to LLMDs and start getting treated for Lyme disease they continue to report back on their progress.
Their reports are not glowing "I'm cured!" reports but are of hard struggles with prescription meds, herxes, and slow stages upward toward better health under the care of a LLMD.
Rather than keep Morgellons patients at an arms length, pinching your nose, I hope more Lyme patients will encourage people with Morgellons to find a LLMD and get tested for Lyme disease.
A person can have Lyme, GWS, MS, or anything and hook up with any message board by googling their symptoms. Many people are unaware that a lot of the diseases today have overlapping symptoms and may believe they've hit on the "right" message board by googling one symptom and finding others with that one symptom. I think a lot Lyme patients without fibers got on the Morgellons board that way.
The Morgellons board does sometimes take off in strange tangents, but after over a year's observation I have often wondered if there is a designed effort by some of the people posting to make sure it is discredited as a disease.
The disinformation could be unintentional, but it distracts people from getting themselves better, leads them astray, and puts a negative label on Morgellons.
Diana
Posts: 13 | From Antelope Valley, California | Registered: Jul 2006
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posted
"How many people are stuck on various message boards without knowing that they should be tested for Lyme?"
Thousands!
It's really scary that some of the patients you mentioned are taking prednisone for their symptoms! If they have Lyme also, they're really headed for trouble.
Sounds like Lymebusters gets Trolls there too! Not surprising!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I was fortunate to make the connection between Lyme and Morgellons about 2 1/2 years ago after finding the old NUSPA board. (National Unidentified Skin Parasite Association) Of the twenty test subjects from the NPA (National Pediculosis Association) study reported in the summer of 2004, ten tested for Lyme on their own and nine had Lyme.
Since then Ginger Savely and Dr. William Harvey have both noted that 90% or more of their Morgellons patients have Lyme.
I've been posting on LymeBusters for almost two years with the intention to get others to take the Lyme connection seriously and to test for Lyme. There is a lot of resistance to that idea for whatever the reason(s).
My wife and I chose to treat Lyme and Morgellons with herbs and are free of symptoms now. We both had the fibers and extreme itching but no broken skin or lesions. Our neurological problems (neuroborreliosis) were the worst symptoms.
The herbal treatment appears to have worked for both conditions.
Blue Skies...........John
Posts: 134 | From North Carolina | Registered: Sep 2004
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Yes, your herbal approach has helped me a lot - as well as parts of Penny's suggestions as posted on the Supplements section of Lymebusters.
I am looking forward to seeing a LLMD very soon, however I don't think I want to give up my anti-candida diet, salt/c, and zapper (soon to be rife too) alternatives. As well as herbs.
I hope the LLMD is going to open the methods I've been using since I want to avoid antibiotics if possible (Valley Fever and antibiotics don't mix).
Just doing the alternative approaches have made a huge difference in the past year (perhaps a 90% reduction in many symptoms), but I think it is important to get tested - even if there is no Lyme (I'd be surprised) there is something going on to do with a systemic fungal infection beyond the "valley fever" I was diagnosed with last year.
VF hits people that are old or immune-weak. I was a very active often outdoors person - with barn chores to do everyday, non-smoker& non-drinker - so I don't know what brought me down other than exposure to ticks, mites, lice and "scabies" (doctor diagnosed me holding an invisible ten foot pole.)
I think the bug bites were the cause for me.
While the ID doctor prescribed diflucan for the VF, which I took for about 10 months, there was absolutely no hint about changing my diet, and any mention of Morgellons symptoms simply resulted in a referral to a Psych. The Derm didn't even do a real exam either. (The Morgellons symptoms are going onto their 5th or 6th year)
I stopped going to the MDs and found out about health and nutrition from books and the internet. That's what changed things for me - learning how to apply nutrition and supplements.
This year I found out that Morgellons people often test positive for Lyme. I've gone ahead and made alternative health changes toward that, but want to be tested.
However, I - and others on the Morgellons sites - have not seen our specific symptom of itchy crawly scalp and the "crazy hair" outlined in the Morgellons definition - although many of us have posted the same photos of the same weird hairs - so it is a shared symptom among people across the world who have never met each other.
So, I kind of feel out-of-the-loop in the Morgellons group too. Others, too, have wondered where the "crazy hairs" stand in the Morgellons world since they don't seem to be defined at the MRF - although Cliff Mickelson and Jan Greema seem to address the issue.
Anyway, for now, my focus is on Lyme due to the many neurological and physical symptoms I've experienced that are listed as Lyme symptoms.
Thank you jwf for leading me down the path to better health at LB. I've always appreciated your pointed posts. In the midst of so much posting chaff, your posts are the grain of truth.
Diana
Posts: 13 | From Antelope Valley, California | Registered: Jul 2006
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