I was hoping for a video clip, but here is the print version.
http://www.click2houston.com/health/4246515/detail.html
Doctors Debate Credibility Of Morgellons Disease
Patients Say Growth Causes Them To Itch Uncontrollably
POSTED: 11:06 am CST March 2, 2005
UPDATED: 10:03 pm CST March 2, 2005
HOUSTON -- A growing problem in Texas has some victims feeling like something is living under their skin.
But, is it a real problem or just their imagination? That is the fight that is playing out between some doctors, nurses and government health agencies.
Kaye Koeberle, a Morgellons disease patient from Houston, told Local 2 that an unexplainable growth caused her to itch uncontrollably before the growth felt like it had crawled out of her skin.
"When I would get out of the shower, it would itch so bad I could hardly stand it. One day, I was in front of the mirror and I could see these white things, five of them, just sticking out of my shoulder," Koeberle said.
Nurse practitioner Ginger Savely, who studies the disease, said she has seen dozens of cases in her office.
"I think this is like a horrible science fiction movie. First off, all you have is this horrible and scary situation going on in your own body that's different than anything you've ever heard of, so it feels like you've been inhabited by aliens, and then to add insult to injury, no one will believe you," Savely said.
Some patients said they have even tried to perform their own research to show doctors what is living beneath their skin.
"I took (a sample) and put it in a petri dish. Those filaments would grow and get longer and longer, and curl around the petri dish," Koeberle said.
Even though many doctors do not recognize Morgellons as a disease, Savely thinks the sheer numbers of people reporting symptoms add to its credibility. California is the only state with more reported cases than Texas.
"I can't believe the people from all over, all walks of life, would describe something the very same way if it were a delusion," Savely said.
And, if it isn't bad enough that there is no treatment, trying to get the research completed to prove the creepy crawlers really exist has proven to be just as difficult. There is no funding available to research it because government health agencies do not recognize it as a disease.
"I always feel that people should keep an open mind and I think there are scientific experiments, what we call evidence-based medicine, that can prove or disprove that an organism is causing this," University of Texas Health Science Center at Houston dermatologist Dr. Stephen Tucker said.
Doctors said they have noticed that many patients who complain about Morgellons symptoms have also been treated or are undergoing treatment for Lyme disease, which suppresses the immune system. The doctors said when the immune system is corrected, the crawling feelings under the patient's skin is often corrected too.
Thanks for taking the trouble of posting that. I was hoping to see or read something about that. Too cool.
Take Care,
Jan
Is Kaye her screen name here, or can I ask?
Great coverage Kaye.
Betty G., Iowa
Good publicity!
[This message has been edited by James H (edited 03 March 2005).]
I had a dream about worms crawling out of my head shortly after the 'loaded' tick bite in '83. It was one of those very real, vivid dreams in which the essence stays with you forever. My worst nightmare came true, but I am making progress.
It it really good that this is getting some coverage. It is the type of coverage that makes ordinary people, who usually don't care about such things MAD... so that they start asking hard questions as to why these people are being treated so badly by the medical profession.
I spent 3 yrs living in Houston( I'm from the N.East) and the whole time I had horriable rashes of all sorts--some that resembled the morgellons, others that really resembled a severe case of teenage acne( and I am downright ancient)
Local dermo( in Houston) was pretty supportive--willing to try anything to help out.
Never had the problem back east--I blamed it on the heat and humidity of Houston.
Doctor blamed it on certain parasites that thrive in the gulf coast regions--due to the tide bringing in the algae that decays on the shoreline, ect.
That theory may not always work, though, because I live quite far away from the shore, and the rashes are still viable during the colder winter months'
I now live between Texas, and Colorado----and when I am staying in Colorado----the rashes clear up.
When I come back to Houston--- within a weeks time---they re-erupt.
Anyway, there maybe something to the coastal parasite theory and the depressed immune system
I have a quite depressed immune response---so bad that I need IVIG every other week to just keep the antibody levels at the low norm level.
Keep in mind that I have clinical proof that there was a b-cell immunity problem prior to my contacting borrelia( I'm the rare bird who had the rash, and knows when I was bitten)though the problem( immune deficientcy) was not bad enough to treat with IVIG at that time
I've always had a **Hunch** that there was some sort of sub-clinical problem with many chronic borrelia sufferers immune response----EVEN PRIOR TO BORRELIA INFECTION
That theory is similar to the one Dr. H had regarding my "morgellons" lesions.
For years, I was told they were related to nasally carried staph and for awhile, they did respond to Rifampin/Bactrim. After awhile tho, they changed in appearance and the fiber thingys started showing up.
I think maybe I had the staph thing and then, after I continued to get sicker and weaker, the others took hold!
Anyway, he felt like they were some kind of "fungus". Probably present on the population but only affecting those of us w/ depressed immune systems. An "opportunistic" infection.
He also felt that the SouthEast Texas humidity and climate was contributing - kind of allowing the stuff to remain "suspended" in the air so to speak. I'm sure I've totally mangled his theory since we discussed it a couple of years ago!!
That would kinda go along w/ your algae theory tho!!
As for what seems to help w/ treatment! Not much in my case. I do think I had less occurances and shorter length of eruption when on Minocycline. I've been on Mepron/Zith for about 5 months and I have one lesion that is still present since erupting in June 2004. I put LacHydrin lotion on them and at first, it seemed to help but lately, not as much. I hate these things because they look awful and leave really ugly scars - at least on me.
Just another joy in my life!!
Take care,
Sherry
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quote:
Originally posted by James H:
I was hoping for a video clip, but here is the print version.
I taped this and burned it to a DVD. At least they covered the story. Maybe they'll do a follow up.
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Jim
Houston, TX