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» LymeNet Flash » Questions and Discussion » Activism » update: 3-27-09, EMAIL NOTES TO Greta Van Susteren's site; is going to do LYME show

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Author Topic: update: 3-27-09, EMAIL NOTES TO Greta Van Susteren's site; is going to do LYME show
bettyg
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everyone SKIP DOWN TO TODAY, 3-27-09'S post by LOSTGURL!

NEW ACTION REQUIRED PROMPTLY!! thanks!
**************************************************

maybe we can go to their site to see if we can find details about this show to READ what was said for sure before email the show UNLESS you happened to have heard her live!! did anyone hear her? thanks! [Smile]

Hi Betty,
Need your help with posting this on your site.


Greta Van Susteren had a pathologist on last night who said lyme was cured in 1 month. She was interviewing him about lyme.


She was given incorrect information by this doctor and we need to tell her the truth.


Here's the email address for everyone to send their stories.


[email protected]


We need to bombard her with the truth so she does another report.

Thanks

Pammie from mdjunction.org lyme board

[ 03-27-2009, 12:21 AM: Message edited by: bettyg ]

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Keebler
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-

I doubt anyone can tell Greta Van Susteren anything.

She has her mind made up and seems to be cut of the same cloth as the IDSA, nearly accusatory for anyone who is not pulling their own weight.


I think communications need to go to her boss. And the boss of that boss, all the way to the top.


-

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Faith6
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I sent Greta a polite e-mail. It may never get to her, but I think that people like her may be the only ones who have the courage to address the issue. I don't think the regular nightly news would touch it.

--------------------
"His faithful love endures forever." Psalm 136

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Pammie
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I'm new on here and thought I would put in a post. I know Betty from another site and asked that she post for help. I saw the interview and actually what happened is Greta was trying to find out if lyme had something to do with the killing in the church. She had a pathologist on there who was very ignorant about lyme. But they all are.. But what he said was lyme is cured within 2-4 weeks of anti-biotics and there may be 1 to 2 percent of the people who get it that go undiagnosed and not cured. He made me as angry as I could get. Now Greta not knowing anything about lyme would now think that's the case, since that is what this pathologist said. Also, think about the rest of the people looking thinking we're cured in that time frame. No wonder people, like our friends and family think we're crazy because these people think we're cured and that is what the public is hearing. I'd like to bombard her, her boss whomever to tell them the correct information. I thought if many people sent her an email about their story and how long they've been suffering, it would get some notice to her that this person didn't know what the heck he was talking about.
Please take some time to email her with your story of being strickened with lyme and how much it's changed your life. Thanks to everyone.

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Keebler
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-

Pammie,

As many here have neurolyme and have trouble reading large blocks of type (it turns to a swirling sea of grey), here's your post broken up so that more will be able to read it.

-------


I'm new on here and thought I would put in a post. I know Betty from another site and asked that she post for help.


I saw the interview and actually what happened is Greta was trying to find out if lyme had something to do with the killing in the church. She had a pathologist on there who was very ignorant about lyme. But they all are..


But what he said was lyme is cured within 2-4 weeks of anti-biotics and there may be 1 to 2 percent of the people who get it that go undiagnosed and not cured. He made me as angry as I could get.


Now Greta not knowing anything about lyme would now think that's the case, since that is what this pathologist said. Also, think about the rest of the people looking thinking we're cured in that time frame.


No wonder people, like our friends and family think we're crazy because these people think we're cured and that is what the public is hearing. I'd like to bombard her, her boss whomever to tell them the correct information.


I thought if many people sent her an email about their story and how long they've been suffering, it would get some notice to her that this person didn't know what the heck he was talking about.


Please take some time to email her with your story of being strickened with lyme and how much it's changed your life.


Thanks to everyone.

-

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jam338
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The people at Fox who seem they may be lyme friendly:

Douglas Kennedy (correspondent). Douglas Kennedy had a featured news story on antidepressants. The piece was on Lynn Michaels, a woman with lyme disease and all she went through. The video link to the report is somewhere here on lymenet within the past few months. The point is he heard her pain and suffering, acknowledged it was caused by lyme disease, etc.

Geraldo Rivera (anchor) interviewed Atty General Blumenthal a few months ago regarding problems at the CT lab, Plum Island. Within the story Blumenthal made a point of mentioning lyme disease was another concern, but it got left there. Geraldo seemed to infer he was interested or receptive to learning more. I could be wrong.

All these people live in the northeast so surely they have heard of this and know family/friends who have been affected.

Not sure how one reaches correspondents, but anchors (Greta and Geraldo)can be emailed through the FoxNews website:

http://www.foxnews.com/story/0,2933,77538,00.html

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Dekrator48
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Hi,

I am always infuriated when I read about such innacurate reporting about Lyme. I had to send an email to the show.

Here is the email I sent:


Dear Greta VanSusteren,


As a Registered Nurse and a sufferer of Lyme disease, I
can tell you
that the information provided by the Pathologist on your
show about Lyme disease was very inaccurate.

There are very few physicians who are properly educated
about Lyme disease.

For that very reason, I was given a fibromyalgia diagnosis
for 21 years. I always knew that the cause of my illness
was likely an infectious one.

It was only through my own research and determination that
I was finally diagnosed with Lyme disease after 21 years.
Now that is what I call CHRONIC LYME!!

My case is not unique. Many Dr's will tell you that first
you will see a bullseye rash and then the patient will be
treated with a few weeks of antibiotics and be cured!

I never had a bullseye rash and I don't remember a tick
bite. 50% of people do not remember either one.

When I had the first sign of Lyme....a flu-like illness, I
was told I had a virus.

Later when I developed muscle pain, fatigue and insomnia,
I was told I had fibromyalgia, for which the cause is
unknown. Patients given that label can expect nothing
further, since Dr's will not search for the cause of an
illness where the cause is "unknown".

Physicians cannot see the big picture. I personally know
at least 8 other people whom I believe are also infected
with Borrelia burgdorferi, the bacterial spirochete that
causes Lyme disease.

Some of the diagnoses commonly given to patients when they
are really suffering from a Borrelia burgdorferi infection
are: MS, fibromyalgia, chronic fatigue syndrome,
Parkinson's disease, ALS, Rheumatoid arthritis, autism,
ADHD, Alszheimer's, bipolar disorder and other psychiatric
disorders, and others. Lyme has been called the "New Great
Imitator".

First, many people who are bitten by a tick are never
diagnosed with Lyme right away and never given any
antibiotics.

Second, the patients who are given a few weeks of
antibiotics are declared cured. Later when they develop
neuromuscular and other systemic symptoms, they are told
that their symptoms are unrelated to Lyme.

Third, these same patients grow sicker and sicker and are
forced to go from Dr to Dr looking for someone with enough
knowledge to help them. Usually that does not happen.
People die from Lyme disease because it is not recognized,
diagnosed or properly treated.

Patients who continue to have symptoms are told by Dr's
who are unable to recognize the Borrelia infection, are
told that "it is all in their head" and they need a
psychiatrist.

Fourth, testing for Lyme is poor and usually very
innacurate.

Almost all Dr's think that if a Lyme screen/lyme titer is
negative, a patient does not have lyme. The truth is that
a lyme titer/screen misses at least 85% of cases of lyme
disease.

If a Dr orders a western blot for lyme, most likely the
lab will not test for all bands, which is a nesessity.
That is totally inadequate.

Also, most labs, when developing their testing criteria,
only included a few species of borrelia bacteria.

Therefore, when those labs run western blots, they will
miss many cases of lyme that are caused by strains of
Borrelia that are not included in that labs testing
methods.

Igenex lab in CA is a reference lab specializing in
testing for lyme and other tick borne illnesses. Igenex
tests for and reports all bands on a western blot. They
included many species of Borrelia bacteria when developing
their testing methods.

There is an absolute medical travesty happening right here
in our country...only no one wants to notice or admit it.

Can you ever imagine this happening to cancer patients or
AIDS patients?

The IDSA says that chronic lyme does not exist. That is
absolutely ridiculous.

Ask the tens of thousands of chronic lyme patients and the
ILADS physicians who are the real experts, if chronic
lyme exists. The answer is an absolute YES!!!

It is ludicrious to think that a bacterial illness that
was undiagnosed for years or very undertreated cannot be
chronic.

To complicate our illness, many patients with Borrelia
infection also are infected with one or more other
tick-borne illnesses that the same tick transmitted.

Bartonella, babesia, ehrlichia and anaplasma are some common tick-borne illnesses.

Physicians cannot even recognize a Borrelia infection, let
alone these complicating illnesses.

I suggest you log onto Oprah's message board and look at
the topic "Under Our Skin" which is a documentary movie
released last year about Lyme disease and look at the over
1200 horror stories from Lyme disease sufferers.
Here is the link:


http://tinyurl.com/bqo8vo

Here are some links to accurate Lyme disease information:

http://tinyurl.com/a7cogr

http://www.ilads.org/files/ILADS_Guidelines.pdf

http://www.lymepa.org/Basics2007v1.2Rev.pdf


It was a disservice to Lyme patients everywhere to
disseminate inaccurate information from a physician who is
not a Lyme expert.

You need an expert lyme physician who is a member of ILADS and a
chronic lyme patient on your show to tell the real truth.

Sincerely,

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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bettyg
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dek, you've done it again! BINGO; you have magic when you write from your heart and soul! thank you for your eloquent way of saying things for us all!! well done my friend!


god bless you keebler for breaking up pammie's 1st post here!!! you know how much i can't read or comprehend long, solid block text with no short paragraphs and double spacing in between them.


pammie, that's one huge problem i have at mdj site; most there post in this long, continuous block text and NO paragraphs and NO SPACING at all in between. i have to just scroll on by...

betty [Smile] xox

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Dekrator48
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You are welcome bettyg!!

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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Pammie
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Thanks Keebler for taking care of that for me. I learn fast.

Dek - great email. I hope we get many people get their personal stories to her.


Jam - thank you also. I'm going to find Jeraldo's email and send him a message to pursue more investigation on lyme. He seems like he would be a good one to do this.

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2roads
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Awesome,thanks [woohoo]
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HaplyCarlessdave
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quote:
Originally posted by Keebler:
-

I doubt anyone can tell Greta Van Susteren anything.

She has her mind made up and seems to be cut of the same cloth as the IDSA, nearly accusatory for anyone who is not pulling their own weight....
-

I wonder how much she was paid? --the alternative would be tragic indeed, though a little less dishonorable!
DaveS

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'Kete-tracker
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Dek- Great job overall. A good intro- "As a Registered Nurse & a sufferer of Lyme...", good counterpoints
(even if I felt some might be too much the 'other way', i.e: "Almost all Dr's think that if a Lyme screen/lyme titer is negative, a patient does not have lyme. The truth is that a lyme titer/screen misses at least 85% of cases of lyme disease."
I would have said "the majority of M.D.s" & "miss over 1/2", but the point is well taken),

and great Links! I just hope Greta bothers to check those out after reading the whole letter.

We can only hope! -'K

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lostgurl
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Hey guys, update, hold on Greta, trust me on this one okay! Will keep you posted. As per Kathy and UOS folks, focus on the Doctors show/Oprah for now. We ARE DOING THIS..........
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AliG
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Huh?

I guess I lost my magic decoder ring.

[confused]

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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bettyg
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ali,

lostgurl has some DIRECT contacts who are involved in various thing on lyme activism events, tv shows, etc.

as lostgurl is told of DEFINITE FINAL DETAILS, she posts about them.

aren't we all blessed to have someone like this new special friend of mine who i have shared things with here from her on mdjunction.com lyme website?

WE SURE ARE BLESSED! xoxox

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'Kete-tracker
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is it Possible (using my General Mills Spacecadet Special Secret Decoder ring)... that lostgurl is saying The Lyme Show (on Oprah) is finally "in the works" & they don't want to be beat to the punch by some lesser media outlet? (Not that we don't need as much media on this as we can.)

I, for one, sent a nicely written one-page letter suggesting possibly TWO shows on Lyme; the 1st show with "Pat", some patients & parents and various activists. The 2nd show would be reserved for the "heavyweights"; a Congressman (who helped introduce the new Lyme bill), an LLMD or 2, a state health official, a person form the medical insurance field, possibly an IDSA member... you get the drift.

Posted a week ago to their Los Angeles studios address. (That was a hard one to track down!)
We'll see what happens!...

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bettyg
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kete,

it might be awhile before lostgurl comes back to reply; she's VERY SICK right now but happened to stop briefly here.
fyi only ... [Smile]

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'Kete-tracker
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Sorry... Meant to say I sent it to the P.O. Box for Harpo Studios in Chicago. The LA address was a copy sent to some "execs".
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'Kete-tracker
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Sorry to hear about that, Betty. Let's all send her some pixie dust.
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lostgurl
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LOVE the decoder ring quote!!! Betty will know from me ASAP even from my BED from my email on my cell phone once I know immediately---- trust me guys ...Thanks Betty for the best explanation possible....

Much appreciation for your understanding....

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bettyg
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kete, i copied your post and send this link to lostgurl so she was aware of someone asking about this.... that's why she came back EVEN from bed! she's one dedicated lyme activist mom/wife, etc.
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AliG
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Thanks for the elaboration. [Wink]

I can make sense of it when I re-read it now. [bonk]

There are so many new things going on on this board and so many new users that I'm having a hard time catching up. [spinning smile]

WHERE should we be concentrating our attention right now, on the bill?

[confused]

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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bettyg
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ali, i too can NOT believe all the lyme activism going on and keeping up with it ALL !!

2 THINGS:


1...IDSA NEW PANEL ... see tincup's post where she needs help and they are dissecting idsa's response and finding links to REFUTE their claims!!!
---------------------------------------------------


VERY HOT; we have until APRIL 3 ONLY to get our comments on new panel, etc. to TWO PEOPLE whose emails show there or another place.

http://flash.lymenet.org/ubb/ultimatebb.php/topic/8/1634


2. lyme disease bills; yes, for ALL to contact their FEDERAL SENATORS/HOUSE REPS TO CO-SPONSOR HR 1179;
----------------------------------
senate version does not have no. yet !! tickborne bill

also when calling or emailing, please tell them that IDSA has written letters to senators/reps in congress telling them to KILL THE BILL!

tell them not to; we chronic lyme/co-infection patients need help NOW and are NOT WAITING ANY MORE. our time has come that our lyme bills are SCHEDULED TO BE DISCUSSED BEFORE SUB-COMMITTEE!!

http://flash.lymenet.org/ubb/ultimatebb.php/topic/8/1628


so NO more letters to greta !!
*********************************

we need to work on these 2 things alone right now! other stuff must wait; we'll work it in as time permits...
oprah show.


tv drs. show will be done; under our skin will let us know WHEN it will be taped and aired!! WELL DONE EVERYONE! thanks all!! xoxoxox
bettyg

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bettyg
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ditto my last post comments for weekend warriors ... please do the above! HELP YOURSELF AND ALL LYME/CO-INFECTION PATIENTS,,,,thanks.
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cecekoo
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It could be possible that the lyme went into remission after 1 month. That's what happend to us after 2 months. However, it all came back after 5 years... and still fighting it for 2 years. It does not go away unless properly treated. It will creep up when your immune system is compromised.
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Lymeorsomething
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Loading up Greta's inbox is probably a wild goose chase. I think that Greta is a good journalist, hard-hitting, but she really focuses of politics and crime and not medical intrigue.

When you have to beg someone like Oprah to do a show on lyme, you're not going to get very far going after someone like Greta.

--------------------
"Whatever can go wrong will go wrong."

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lostgurl
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NOW IS THE TIME!!!! POST NOW!!!! She is viewing and writing about the film in the blog. don't search in that blog I can't find it either.Kathy just sent word and said to pass it on so go go go!!!! Post away..


http://gretawire.foxnews.com/2008/08/12/check-it-out-tonights-greta-live-wire/#respond

Betty if you want to do a new post with sticky be my guest. This is important!!! We don't even have this much excitement with Oprah yet

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radfaraf
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New post http://gretawire.foxnews.com/2009/03/26/do-you-know-about-this-lyme-disease
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bettyg
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radfar... thank you so much for finding this for ALL of us!

LET'S START POSTING TO HER NOW! She plans on doing something in the future; let's give her the ammunition now ok! *********************************


March 26th, 2009 4:36 PM Eastern

Do you know about this? Lyme Disease ....

by Greta Van Susteren


Here is a video you might want to watch -- a very serious medical problem that we should know about.

Lyme disease is one of those horrible diseases that people only learn about AFTER they get it or someone they love gets it.


It would be smart of all of us to know about it BEFORE since it afflicts many and we should do what we can to prevent it...check this trailer out for a documentary on Lyme disease.


I am fortunate to have the documentary in my laptop and I have been watching it on airplanes (I don't have much free time these days!)


Watch and post your comment: (incidentally I was tipped off to this important issue by a reporter for another network who has Lyme disease...)


i'll go right now and start this rolling! please join me lymenetter!

lostgurl has inside info; from those who really know what is going on! TRUST HER COMPLETELY!

1500 CHARACTERS ALLOWED/NOT WORDS!
**************************************

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bettyg
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darn, i copied my post after i posted, but lost it between there and here, they did NOT post mine promptly.

i posted it under radfar's new post link!
***********************************************

New post http://gretawire.foxnews.com/2009/03/26/do-you-know-about-this-lyme-disease


130 replies there. haven't read them ... but considering greta posted her comments at 436 pm TODAY; that's outstanding in less than 7 hours!!

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Lou B
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LymeNet Users,

I'm moving this Topic to the Activism forum and featuring it at the top of the Topic list.

Let's see if we can get Greta Van Susteren to focus on Lyme and other TBD's.

Go for it ...

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Lou B
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Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
bettyg
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if you SUBSCRIBE, you get EVERYBODY'S COMMENTS IMMEDIATELY to your home address; so i had 45 in my inbox this am.

give that serious thought if you don't want to take LOTS OF TIME READING!

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AmyPW8
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I posted!

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Amy

Diagnosed April 29, 2007.

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mushroomman06
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Consider it Done and sent.
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bettyg
Unregistered


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ron, i received your post/others.

woman named EMILY HIJACKED OUR THREAD promoting and arguing about colidical silver! [tsk] [toilet]

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