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Posted by daystar1952 (Member # 3255) on :

We are told the story we got in USA TODAY will run tomorrow in the Lifestyle section. We sent them UNDER OUR SKIN's trailer and they talked to Jordan Fisher Smith.

On the Marc Media has been working hard to tell the real story about Lyme disease, since once again this disease is splashed across headlines around the world, due to another tragic event. I'm sure most of you have heard, yesterday, a young man, who was suffering from Lyme disease shot and killed a pastor in Illinois.

We have been told by producers that we have pitched that GMA is doing a story tomorrow morning on mental health affects of Lyme disease too. Supposedly using movie... booking guests via satellite.... not sure what time. MORE INFO TO COME.

We have been trying to get ahead of this story -- especially in light of Dr. Shapiro's comments listed below. (according to him, it is a disease that rarely affects the nervous system). These comments were printed in the Associated Press and went everywhere. It's comments like Shapiros' that make it crucial for us to go after these stories. We are trying to get the AP to do another story -- a factual one.

UNDER OUR SKIN'S Jordan Fisher Smith was interviewed by USA Today about the severe mental and physical impact of Lyme disease. I am sure there will be people interviewed who say it's easily treated and could not possibly cause violent behavior. We have worked hard to make sure the real story is told but we have no control on how these stories come out. If it is a good story -- or a bad one-- expect many calls tomorrow. The story might get a lot bigger.

NATIONALLY SYNDICATED SHOW: It looks like a nationally syndicated show wants to do a story on UNDER OUR SKIN. We'll give you updates very soon.

Yesterday's story was a tragedy, please keep the victims in your thoughts. No one really wants Lyme disease to be associated with violence or attacking chimps. But the media is going to report about it anyway, so we must educate them about the real story. Let's cross our fingers for a decent story tomorrow. I will admit, I'm nervous! Jordan was excellent, the reporter seemed to "get it", let's just hope it counters some of the "works of fiction" they'll hear from the IDSA.

"Lyme disease doesn't cause people to shoot people," said Dr. Eugene Shapiro, a Lyme disease expert at Yale University.It can cause brain inflammation and in rare cases, problems with concentration and short-term memory, and sleep disturbances, according to the Centers for Disease Control and Prevention's Web site.Other rare nervous-system symptoms include severe headaches and neck stiffness, which can be treated with antibiotics, Shapiro said.

There are also isolated reports of hallucinations and psychotic illness blamed on Lyme disease. But these are controversial and some experts, including Shapiro, believe affected people likely had pre-existing mental problems or were misdiagnosed and never had Lyme disease.
Posted by Lymetoo (Member # 743) on :
Posted by Dancer (Member # 11039) on :
Posted by pineapple (Member # 11904) on :
Posted by daystar1952 (Member # 3255) on :

News coverage.....

At best we controlled the bleeding yesterday -- trying to make sure Dr. Shapiro and IDSA's spin weren't the only comments out there. Jordan Fisher Smith's interviews were cut unfortunately and the powerful pictures of the movie were not shown yesterday ---- but we are working even harder today.

At least we got them contacting the Lyme physicians on the front lines and telling BOTH sides of this story. We are working AP and Today Show hard to continue to move Lyme story forward with break out coverage "just" on Lyme. GMA canceled story due to pressure from other side..... they are trying to get it back on track today. Once the suspects mother speaks -- Lyme will hit the headlines again!!!!!

Good News: Lyme disease is still side bar - back drop story. No one has picked up the real story yet. We still have time! Real work begins today. Everyone please be ready -- you might be contacted today or days in near future. All the people we have contacted --- we might be giving out your numbers again today. Please be ready for more! .

Today show: TODAY: Huffington Post:

On The Marc Media
Posted by kmm215 (Member # 15666) on :

I heard about this story on the news...and I see that the family is stating that he had mental impairment due to Lyme. I'm seeing the good and the bad that can come from this?

While Shapiro's comments are ludicrous--we all know Lyme can mentally impair, but if the media treats Lyme victims as "insane" after being bit by a tick...what happens to those of us who are working daily and living with Lyme. I'm a little concerned with how others will judge and react? Are they going to be waiting for me to "blow a fuse?" Could this be cause for discrimination?

However, if the proper information is reported, it really could be just what we need to bring things to the forefront? And finally get answers and proper treatment for all!
Posted by bettyg (Member # 6147) on :
fyi about above.

copying from lyme board ...

03/09/2009 23:11
Lime Green Ribbon
Posts: 929
Group Leader

I should have really mentioned that the Oprah post we are all replying to is from On The Marc Media, that's Marc Silverstein, who is KATHY FOWLER SILVERSTEIN'S hubby...

Nice to have folks like them know where we are and to continue to fight for us. They are fighting every day.

Twitter is on again on Thursday if all want to join this is On The Marc Media's Under Our Skin page with the Lyme in the news links attached..

Post edited by: Canuck, at: 03/09/2009 23:24

Kathy also has/had lyme disease; she is a JOURNALIST!
Posted by bettyg (Member # 6147) on :
i couldn't get the GMA video to play; how did anyone get this going?? i clicked on each of things at bottom to see what they said and chose to start video ... nothing happened ??
Posted by keda (Member # 18954) on :
In response to the horror of psych symptoms

caused by Lyme, we should remember that patients

that are properly diagnosed and treated early

enough on don't get to this state.

I had my first LLMD appointment yesterday. He

said with the diagnosis of Lyme that he could

help me -- really, really improve the quality of

my life -- *including* my psychiatric symptoms.

I joked about wanting to throw myself under a

bus, but the doc said that wouldn't kill the

Lyme. I retorted, "But what if I were


"Ah," he said, "you're going for that two-step


I would say the focus is on the people who

discounted Lyme's serious psychological effects -

- and to ignore them is usually to place the

patients in mortal peril. I don't know the

stats, but killing ourselves (or just plain old

dying from Lyme) seems so much more prevalent

than murdering someone else.

For those of you "out" and holding down jobs, I

hope that you are receiving adequate treatment,

and that you don't suffer from severe psysch


If anyone gives you the hairy eyeball, maybe you

let them know you're lucky enough to be treated

by a doc who believes that Lyme is a serious

disease. And isn't this situation proof that

(a) it sure is serious (b) some docs out

there aren't taking it seriously and (c) isn't

that gosh darn scary?

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