LymeNet Flash: Our whole family will be in the news!! (update)

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Posted by Amy C (Member # 19297) on :

Our family is going to be in the local newspaper (The Tribune, Warren, Ohio) and the local news station (Channel 27 CBS, Youngstown, Ohio)
We also have a display table set up in the Girard Library.

My mom set all this up! She did the displays and emailed the local news.

They want to interview us soon. I am excited and nervous!

I think I just gave advice on this to Ocean recently and now I am nervous. LOL

But very excited to get the awareness out in Ohio. The small town I grew up in has no clue about this disease!

When I tell people my whole family has it they look at my like I am an alien. Then they say "I didn't know it was genetic?" I am surprised at how little people in general know about health. A bacteria is not genetic but they have no clue of the difference!

This is gonna be great!!

(putting this is medical and support to get feedback)

Thanks, Amy

[ 06-02-2009, 01:26 AM: Message edited by: Amy C ]

Posted by bettyg (Member # 6147) on :

CONGRATS!! to you and mom; i posted comments on your other post xoxox

Posted by LisaS (Member # 10581) on :

Congrats Amy, that is great! I swear the word is finally getting out there!

Posted by Kreynolds (Member # 15117) on :

YES!!!!!!!!! Way to go!!!!!

This is what we NEED more of!!!! Let us know how everything goes!!! [woohoo]

Posted by Dekrator48 (Member # 18239) on :

Great news, Amy!!!

You go girl!!!!!!!!!!!!!!!

Posted by Ann-OH (Member # 2020) on :

Good for you, Amy! You didn't say just when you will be on TV and in the paper. I will send you a p.m.
Ann 0H

Posted by Tincup (Member # 5829) on :

Hot diggity dawgs! You are going to rock that town!

Good for you.

And did you know mothers are some of the best activists we have!

Give your mom a hug from me.

Go mom go!

[Big Grin]

Posted by trishee (Member # 9699) on :

This is incredible activism! You are all so brave and I am so happy the lyme community is really stepping way up wit articles and now news coverage too. Dont' forget to trash the CDC and IDSA as they do us.
Well done and blessings,
Trish

Posted by Amy C (Member # 19297) on :

Thanks everyone! We are waiting on a date for the interviews.

I think maybe this upcoming weekend for the tv news because my brother needs to come home from college.

Thanks for your support!! I will post any links or info when I get it [Smile]

Posted by bettyg (Member # 6147) on :

amy great!! [group hug]

Posted by Zebco 33 (Member # 18376) on :

Amy~ I really admire your courage to represent all of us who are suffering and struggling.

Go Amy~Go Amy~ Go Amy~

Go Amy's Mom~ Outstanding.

You make me want to call our local paper or T.V.station here. Inspiration. Good Job.

Posted by Amy C (Member # 19297) on :

Update...

Our family is being interviewed by our local tv station for a news report.

Monday (tomorrow) at 10am Roxann Seabest from Youngstown 27 News WKBN will be at my house!!

Pray that I don't get Lyme brain! LOL

It will be my mom, me and my youngest son. My oldest son and my brother don't want to be on tv.

Will post a link to our interview if she puts in online.

Thanks for your support!!
Amy

Posted by Amy C (Member # 19297) on :

We just got done interviewing with our local news channel.

We will be aired tonight on our local news channels WKBN 27 & WYTV 33 at 5, 6 and 11. Then on local Fox news at 10.

If there is an on line version I will post it since I don't think anyone gets these channels.

Thanks for your support!
Amy

Posted by lymie tony z (Member # 5130) on :

Good going Amy and Family,

So, how come I did'nt know about you when I was going thru that area to a certain llmd in PA?

I did'nt have a computer back then though...about ohhhhh....12 years ago....I would have dropped in to say HiYa!

zman

Posted by Amy C (Member # 19297) on :

Here is the link to our news story.
They spelled my name wrong of course. LOL

Feel free to add a comment on their site at the bottom of the story!

http://shar.es/mhC5

Oh and they said we were 1 of their top 5 stories!

[ 05-26-2009, 12:26 AM: Message edited by: Amy C ]

Posted by Keebler (Member # 12673) on :

-

Very nice article, Amy. I think the reporter did a nice job in the tone. It's probably a good thing that you name was misspelled, actually.

I can tell by your cheery face that you have a spark for life. Hold on to that.

-

Posted by Amy C (Member # 19297) on :

Here is the video version!

You have to click on "Lyme Disease" once you get to this site.

http://www.wytv.com/mediacenter/local.aspx

If anyone has troubles getting my video link to work just go to

http://www.wytv.com/default.aspx

and click on the Lyme Disease video under top stories.

Thanks everyone!!

[ 05-26-2009, 12:22 AM: Message edited by: Amy C ]

Posted by bettyg (Member # 6147) on :

up for me to watch tomorrow; hubby is sleeping so must be quiet now ...

i'm so looking forward to viewing them both!! [Smile]

xoxox

Posted by Amy C (Member # 19297) on :

Found these links that work better to get to the interview.

Written story (please add comments bottom of the interview):
http://www.wytv.com/content/news/local/story/Living-with-Lyme-Disease/zOq_SXfXQUKqBenLLJxiVg.cspx

Video:
http://www.wytv.com/mediacenter/[email protected]&navCatId=11

Posted by John S (Member # 19756) on :

congrats

Posted by John S (Member # 19756) on :

I think your mom looks like the secretary where I work.

Posted by bettyg (Member # 6147) on :

here's what i posted ....PLEASE VOTE FOR OUR COMMENTS!! ************************************

Comments
BettyG Iowa - 5/26/2009
1 Vote
Report User

Thank you for writing such a good story of the devastation of LYME disease for Amy, Marianne, & Brandon!!

I've had chronic lyme for 39 yrs. last xmas; 34.5 years MISDIAGNOSED BY 40-50 DRS! UNACCEPTABLE! I didn't know then that 300 OTHER ILLNESSES MIMICK LYME INCLUDING:

MS, ALS, fibromyalgia, chronic fatigue, parkinson's, ALZHEIMER'S/dementia, most mental illnesses, bell's pulsy, & list goes on & on!

It is a drs. clinical diagnosis but a western blot igm and igg blood test drawn/sent to IGENEX LAB, CALIF. will show all 16 protein bands for +, -, & indetermined.

1980 - Jan. 2008 LYME statistics for all 50 states broken down by years!

http://www.lyme.org/resources/1980-cumulative.htm 08

Lyme Treatment Guidelines:

http://www.ilads.org/lyme_disease/treatment_guidelines.html

There have been many deaths from lyme and co-infections/other diseases the ticks carry; see www.lymememorial.org for many statistics per state and names!

We have a lyme bill in congress for over 10.5 years now. Please call your state's HOUSE REP to be a CO-SPONSOR of HR 1179, lyme/vector-borne disease bill.

It's being held up in subcommittee by chair NJ HR Frank Pallone. Interesting he has received $505,000 in "medical community" lobbyist money.

There are infectious drs. aka IDSA, infectious disease society of america vs. our chronic lyme literate mds, ILADS, INTL. LYME ASSOCIATED DISEASE SOCIETY. fyi, infectious drs. will treat from ONE pill up to 3 wks. MAX of antibiotics.

They do NOT believe in chronic lyme disease! Because they UNDERTREAT lyme symptoms, patients become CHRONIC and need months up to years of antibiotics to kill off the spirochete in the body.

Many have to have IV ABX for many months & years costing from $5-$10,000/MONTH OUT OF POCKET EXPENSES.

The insurance companies REFUSE to pay for any of our lyme/co-infection expenses! We just want EQUALITY for them to pay their fair share like cancer, AIDS/HIV!

That's not asking to much is it?

Posted by MaryL (Member # 11997) on :

Kudos, Amy! Keep it going. It's amazing how effective you can be doing one interview at a time. The squeaky wheel gets the grease. Keep Squeaking!!! It's worked for our little town.

Posted by Amy C (Member # 19297) on :

We just interviewed with the local newspaper today and the other local one wants to meet with us in a few days! Woo Hoo!!

Posted by bettyg (Member # 6147) on :

amy, TERRIFIC news; 2nd interview coming up; way to go girl! [Smile]