Morgellon’s goes MSM

[I_Make_Mistakes]

CBS 3 ) PHILADELPHIA Medical Reporter Stephanie Stahl reports the C.D.C. has established a special task force to investigate a mysterious skin disease that’s on the rise in some places. Patients describe a creepy, crawly feeling.
...
“The symptoms are unquestionably real and the symptoms are in the skin you know they're not in the mind,” said Dr. Caroline Koblenzer of University of Pennsylvania.

Dr. Koblenzer, a Philadelphia psycho-dermatologist says not much is known about the disease, but the skin lesions might be related to stress or anxiety.

..
The C.D.C. isn't ready to officially it a disease, but they have a task force investigating trying to figure out what it is.

Above typo their'e not mine.

For some reason, this page is blank at the top maybe my browser settings. If you scroll down the transcript appears. There is also a video to the right under top stories (it's the 3rd or 4th button)

http://cbs3.com/topstories/local_story_150210350.html

edit : Just figured out how to link directly to the video here it is

http://cbs3.com/video/?id=[e-mail]

The video is not the full transcript, which is worth the read.

[salvorhardin]

1. Some facts about Morgellons

Sunday, May 28, 2006
Morgellons Fact Check

The following Q&A is aimed at addressing some of the misconceptions regarding Morgellons that have been propagated in various media articles.

(Note: This will be a work in progress - please email me suggestions and corrections at [e-mail] )


Q) What is Morgellons Disease?
A) Morgellons is an invented disease, self-diagnosed via the internet. People claiming to have Morgellons have widely differing symptoms, the most common of which is they feel they have been misdiagnosed by their doctors. Supporters claim the most notable feature is fibers emerging from the skin, yet everyone has fibers on their skin.

Q) Is Morgellons a real disease?
A) No. The offered case definition is very long, and very vague. It fits a very large number of existing diseases, and simply suggest co-morbidity of a variety of conditions such as eczema, chronic fatigue and anxiety disorders. The "evidence" for Morgellons is entirely anecdotal.

Q) What is the History of Morgellons?
A) Morgellons was invented in 2002 by Mary Leitao, to explain her 3-year old son's eczema. Leitao looked at her son's skin under a microscope and found fibers on it, and decided she had discovered a new disease characterized by fibers emerging from lesions, and started a foundation. Her son's eczema cleared up naturally. His symptoms did not include those of the more recent claims of Morgellons. The list of symptoms has rapidly expanded as more people registered. Leitao encouraged people to seek out fibers in their lesions. Morgellons was spread over the internet.

Q) Are the most cases in California, Texas and Florida?
A) Yes, because that's where the most people are, those stateS have the highest populations. Morgellons is a self-diagnosed disease. People "register" over the internet by filling out a simple form on Morgellons.org.

Q) Who is Ginger Savely?
A) Ginger Savely is a nurse practitioner who was unable to find a doctor in Texas to supervise her practice, due to her unorthodox and possibly dangerous treatment of Lyme disease patients. She gives similar treatments to self-diagnosed Morgellons suffers. She is a member of the Morgellons Research Foundation, and co-authored an article on it with Leitao. She is active in the Media campaign, and is seeking new patients. She makes a living from selling her unorthodox treatments.

Q) Did Travis Wilson commit suicide because of Morgellons?
A) His mother, Lisa Wilson, initially though this, and this was stated on her TV interviews, but on internet postings she now believes it was not an overdose, and instead was a toxic reaction to his medication. Travis Wilson was a heroin user with a prior self described "two balloons a day drug habit". He was a patient of Savely who oversaw $14,000 of his treatment. He seemed paranoid and delusional, his sad demise is being used to promote Morgellons disease.

http://morgellonswatch.blogspot.com

[I_Make_Mistakes]

3. I am confused, are you denying the existence of this disease or

challengingthose who acknowledge it, such as the above University of Pennsylvania physician and the CDC task force. Your post was very confusing to me?

[salvorhardin]

11. I am, as always, encouraging people to think critically

About what they read, view or hear on any topic.

[Warpy]

12. I'll believe there might be something out there

the day an analysis of the fibres shows something besides "not textile."

This should be the most basic research step, folks. That it hasn't been done shows this is a hoax.

[Viva_La_Revolution]

2. When it's not acceptable to freak out because of stress...

(state of the union, our empire crashing and burning) then people come up with new diseases.

Morgellon’s is psychosomatic. Tweakers are a majority of the patients, the rest are stress related. I can name 5 speed freaks right now who thought bugs were burrowing into their skin, when it was the meth talking. Then there's the 10% of the population who are susceptible to the media, and can be convinced they have it too. :(

[I_Make_Mistakes]

4. The CDC has a task force investigating this and IVY league

Physicians are studying this is fraud? Are you a physician? I am not trying to be snarky, but I am trying to figure out where you are coming from.

[Viva_La_Revolution]

5. I have been following this story on the net for over a year....

and it seems that with Antipsychotic drugs and Therapy, or simply covering the lesion with a bandage (so the patient can't pick at it) cures it.

I'm not a doctor, I just play one on the internet, but I have known several meth heads with the same symptoms. I watched a guy sit in the corner and pick himself bloody with a bowie knife after being up for 4 days. Several prescription meds seem to cause the same symptoms.

I think if it were a real disease, some one in the medical field would have managed to come up with a "viable sample" which so far, hasn't happened.

I'm not saying this is not real to the patients, I have no doubt that it is. I'm also 99% percent sure it's psychosomatic.

[I_Make_Mistakes]

6. I was mis diagnosed for Lyme disease for 3 freaking yrs. I had

been to so many specialists with real problematic findings and yet no available diagnosis. For ex. my knee would just swell with fluid, ANA's and all the other arthritic blood tests negative, the rheumatologist extracted fluid from the knee, no gout, no arthritis, he diagnosed fibromyalgia. I had told him that I thought that I had lyme symptoms and only found out later he could have tested the senovial fluid from my knee for lyme. This was during a time that the majority of physicians in NJ were denying Lyme disease.

Well, I tested positive and saw 3 experts, too be sure, and yes it was lyme.

The way that physicians started to treat Lyme, a woman, paralyzed by lyme won a lawsuit for 10's of millions of dollars. Then all of a sudden, lyme was not a psychosomatic illness anymore.

You should study the Lyme story, I actually was told my primary that a bullseye could have been caused by a spider bite. I got bit by a black widow and believe me, that pain was so excruciating, that the Lyme pain paled by comparison (and by the way, I still was suffering from Lyme at the time).

Then, I was told that the Western Blot for Lyme was not that accurate, the Western blot, at last at the time was used for HIV, MS, etc., and was very accurate for those diseases. Always made me wonder.

Edit to add:

I went to DC for a congressional address to Lyme sufferers in 96 or 97, and Congress was allocating I think 200 millon for Lyme research because it was so prevalent in the military!

[Viva_La_Revolution]

7. I have never doubted Lyme disease, from the beginning...

It just made sense. And I remember the days when Pre-menstrual symptoms were considered a "mental issue", I never doubted that either, because I knew from experience and friends that there was 'something real there'.

Still, Morgellens just doesn't 'fit' with scientific research. Back in the day of Pre-menstrual symptoms and Lyme disease, there were a few accredited scientists who knew there was something there. With Morgellens, we seem to have one nurse and some self-diagnosed patients. That's a big difference.

[I_Make_Mistakes]

8. Once again, a CDC task force and Ivy league Physicians are

someones looking into this. And by the by, Lyme was being denied by many physicians here, you were nuts. I just had so many high tech, state of the art tests that proved my symptoms were not in my head, and yet, the moran drs. denied the Lyme diagnosis. I still don't know if it was a cover up, or sheer stupidity, prob. never will.

[Ayesha]

9. What led you to suspect Lyme?

My partner has been diagnosed with fibromyalgia and chronic fatigue syndrome, but we believe something else/more is going on. She has a family history of rheumatoid arthritis but tested negative. Her ANA was a low positive, the doctor said she was probably briefly pregnant back when she was 19 and with a man, and she remembers thinking she might have been, so that tends to rule out lupus. But she has skin photosensitivity and itching after she goes out in the sun, a butterfly rash on her face, very debilitating fatigue, and periods of anxiety and hypersensitivity to sound and touch. She only functions at all because of Provigil and lots and lots of caffeine.

Back on topic, I've seen a couple of local news stories on Morgellon's and am keeping an open mind. I am not going to be one of those people dismissing a person's illness as not real when it's quite possibly something science just doesn't understand yet. People with fibromyalgia and chronic fatigue syndrome were and often still are told that they're just depressed, that it's all in their head, and their disorder gets dismissed as not being serious. (Try living with someone with Fibro/CFS and you learn just how real and disabling it is!) Now the CDC has found a defective gene that causes many cases of CFS; who is to say they won't find some cause for the Morgellon's symptoms? I say, let the researchers do their job, let them find what's going on, before labeling these people crazy.

[salvorhardin]

10. Nobody is labeling these people crazy

What this skeptic is doing though is labeling Ginger Savey a con artist and quack. I sincerely doubt these people have an unknown type of disease and think they are being preyed upon by Ginger Savey.

The one most active in the news right now is Virginia R. Savely, RN, (aka Ginger Savely). Savely is a Family Nurse Practitioner. She recently moved from Texas to San Francisco, because she could no longer find a doctor in Austin who would supervise her practice. The problem was that she was treating people who had been diagnosed with Chronic Lyme (a debatable disease in itself), with long term antibiotic therapy, something that is not approved by the Texas Medical Board, and is generally regarded to have only placebo effect. ...

So, Savely moved to SF to work with Dr. Raphael Stricker. Stricker has an impressive looking resume, and currently works as Medical Director at Union Square Medical Associates (USMA).

USMA pushes six things:


Fertility treatment, specifically a novel treatment of "immunological abortion" with "intravenous immunoglobulin" (an infusion of antibodies from blood donors).
Viagra - If you want it, it costs $400 for an initial consult, then $15 per tablet. They will accept accept your personal check, major credit cards (VISA or MasterCard), and (oddly enough) cash.
Weight Loss - with "magical" medications
AIDS treatment - but only with DNBC (Dinitrochlorobenzene), a novel treatment with limited, yet promising clinical studies.
Lyme disease - which is not very common is California. Stricker recommend extended courses of antibiotics.
Hyperbaric Oxygen Therapy - usually used to treat decompression sickness, now an experimental treatment for many conditions.

What's common about these treatments? The common factor is they are NOT COVERED BY MEDICAL INSURANCE.

More...
http://morgellonswatch.blogspot.com/2006/05/follow-money.html

[Watchingyou]

19. Morgellonswatch

Salvorhardin, why do you promote the 'morgellonswatch' blog spot in your posts?

This persons behaviour is not Christian like at all. Personal attacks at people are just uncalled for. Don't you think?

[I_Make_Mistakes]

13. One of my BF's, yes I have a few, it makes life easier, said that

my symptoms sounded a lot like one of subordinates husband's Lyme disease. She got permission to give me his phone number and I called him, nice guy, I sent he and his wife a gift certificate for dinner because he guided me through the process.

At the end of my first phone conversation with him, I felt that there was a 50% chance of me having Lyme, until, just before we hung up he said, "Oh, yeah and that stabbing pain just below my right rib cage.", my jaw dropped. That symptom had confused all my doctor's, because there is really nothing there to note, that would cause me to double over.

I want to tell you, that I have never met another person with Lyme that had that symptom, so I think God, gave me a little clue.

After that, I started becoming more interested in Lyme, because the doctor's were finding problems, but no answers. At one time, I was on 9 medications (within a 9mo. period of the rash) treating every symptom.

There is a very good website http://www.lyme.org, (the sponsor of which organized the meeting in Washington), to lead you through the symptoms. On the right hand side is a topic, Diseases, which lists the multitude of tick bourne diseases which in some instances have overlapping symptoms. I was tested for all of them, that is a story for another time.

[Celebration]

14. Lyme Disease: The Unknown Epidemic

http://www.mercola.com/2001/jul/25/lyme_disease.htm

It is not a rare disease, it is epidemic. It is not just tick-borne; it can also be transmitted by other insects, including fleas, mosquitoes and mites -- and by human-to-human contact.

Neither is Lyme usually indicated by a bull's-eye rash; this is found in only a minority of cases. And, except when it is diagnosed at a very early stage, Lyme is rarely cured by a simple course of antibiotics. Finally, Lyme is not just a disease that makes you "tired and achy" -- it can utterly destroy a person's life and ultimately be fatal.

Lyme disease, in fact, might be the most insidious -- and least understood -- infectious disease of our day. "If it weren't for AIDS," says Nick Harris, Ph.D., President of IgeneX, Inc., a research and testing laboratory in Palo Alto, California, "Lyme would be the number one infectious disease in the United States and Western Europe."

[I_Make_Mistakes]

15. It really ruined my life. I had just returned from Cancun when I

noticed a strange huge mark on my outer thigh as my neighbor called it, "your bad ass rash". I had informed myself in a general sense about Lyme disease, so I continue to beat myself up about not paying more attention to the rash.

I had been investigating a possible business venture in Mexico and was in the process of formulating a sub chapter s-corp, (my attention was diverted) when I got the flu like symptoms. Additionally, this was my second visit to Cancun in 2 months so I was so tan that I felt that I looked dirty (I have always tanned very dark brown, but never that dark), so the rash was a dark brown to black color, not like any of the Lyme pictures that I had seen. My doctor thought, quite reasonably, that I had picked up a bacteria from the food and put me on a very mild antibiotic for it.

I started my first contract position as a S-chapter corp. and less than 4 mos. after the appearance of the rash, fell through a storm drain leaving work. The laceration to my knee was so severe that the had to call in a consult to determine how to best close it, and had to schedule me around the other ER patients, because it required well over an hour to close it. It was weird, drs and nurses kept asking if I minded if they took a look that I finally asked what the big deal was, the answer, "We don't get to see things like this often.".

The reason that I digressed about the knee injury was that it through a wrinkle into everything. My spine had taken a serious jolt in fall and there's that autoimmune diseases tend to appear after a serious trauma. Looking back, I still don't know all that was as a result of the fall or the Lyme and I never will.

I got so used to my body doing weird things that I became nonchalant about them, because the doctor's weren't coming up with squat. At one point, I was on antibiotics for my millionth URI, that when my tongue swelled and throat was closing I waited 3 hrs. to go to the doctor's office. I was informed that I could've died, as I was having an allergic reaction to the antibiotic which I had previously taken.

I still have Lyme related problems and always will, it just sux.

Edit to : re: mercola I just came across that site today when looking to see what was going on with Lyme. There was/is a pervasive reluctance to acknowledge how wide spread Lyme is.

I was going to sue, because the 8th primary would not refer me to a Lyme specialist (he either failed to order or to follow up that the Western Blot had been performed, instead they did a Elisa again) and told me it was negative (my thinking the Western Blot had been performed). When I finally had a Western Blot done, it was positive, and I questioned how the one he ordered could be negative from a year he realized that he had messed up. I immediately requested a copy of my medical records, but they refused, saying it had to go to Risk Mgmt first. Anyone want to guess what happens in Risk Mgmt? It took them 2 weeks to manage the risk in my medical records!

Oh, when I saw an attorney who specializes in Lyme cases he told me to make an appt. with Dr. Leonard Sigal. Dr. Sigal charged in 1998, $380.00/ cash only for a visit, tests would be extra and it took months to get an appt. with him. The reason, so Dr. Sigal could not testify against me, as he would be my doctor. If you want to learn about evil, look up Dr. Sigal.

These doctors whose main income comes from testifying against patients or charges exorbitant fees to treat patients, truly are evil. It is for people like that, that I get satisfaction as being a Christian, that everyone has a day of judgment.

[Celebration]

16. yikes

There are energetic therapists addressing lyme. I am wondering if there is research on the effect of elevating glutathione levels on lyme (like some chronic fatigue patients do). Certain whey proteins do that I think.

Good grief what a racket by that doctor. People like that should be put in jail. It's great to believe in Buudhist karma too!! I mean, as a Christian, one is supposed to forgive, I think. With karma, it is just cause and effect, cause and effect, cause and effect.

I remember when chronic fatigue syndrome was talked about in the popular press for a while all the skeptics said it was an "all in your head" disease too. I just really doubt the mass hysteria explanation for fibers coming out of wounds, particularly since there are statistics now showing lyme showing up at a much greater rate in Morgellon's patients.

[I_Make_Mistakes]

17. Christians are to forgive because we let God do the judging.

That is what I meant by judgment day. We are all guilty of doing bad things and needy of forgiveness, it is a matter of to what degree.

[Celebration]

18. this is far afield

At times I am sort of a Christian too :o) since I have been conditioned to be one and don't care about releasing the conditioning. But I do find the religion rather confusing if I try to analyze it. As an example if the judgment is up to God, then how can one be satisfied that a particular person will have to have a judgment day? That is, unless one is convinced of the results of the judgment? In which case, one is predicting it, and therefore, by proxy doing the judging oneself (???)

All that aside, just goes to show that doctors can be guilty of unethical scams. It's a sign of the times I guess.

[SkyIsGrey]

20. Have they tested for Lupus?

Especially with the butter fly rash across the face, the ANA count, fatigue. Being pregnant would not rule out Lupus. I have an Auto Immune disorder as well(Rheumatoid Arthritis, Chron's). While researching the net on Autoimmune disorders, I came across this site Lupus Around the World. There is a criteria for diagnosing Lupus, if I remember correctly, there are Eleven symptoms listed and if the patient meets Five of them, it is considered to be a diagnosis of Lupus. I do stress that I am doing this from memory. I would at least look into it.

[eppur_se_muova]

21. Link to an earlier Morgellon's thread (from mid-May)

http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=222&topic_id=7980&mesg_id=7980

on edit: http://www.morgellons.org/