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

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»	LymeNet Flash » Questions and Discussion » Medical Questions » Our whole family will be in the news!! (update)

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

Amy C
LymeNet Contributor
Member # 19297

posted

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, 01:28 AM: Message edited by: Amy C ]

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

Posts: 470 | From Painesville, Ohio | Registered: Mar 2009 | IP: Logged |

bettyg
Unregistered

posted

AMY, CONGRATS TO YOU & DEAR MOM FOR SETTING THIS UP!!

wow, this will be great educational and for MAY'S lyme awareness activities.

relax; find ocean's post in support and be prepared with paperwork to send with them.

thanks for sharing & DOING YOUR BIT FOR ACTIVISM. xoxox

IP: Logged |

Ocean
Frequent Contributor (1K+ posts)
Member # 3496

posted

Awesome Amy!!! Good job to you and your mom!!

It is hard to not be nervous, but just think about what a great service you are doing for other people in Ohio who don't know about Lyme!!

For me the hardest part was telling my story from my teens when I was the worst. I didn't want to remember it...shudder!

You will do GREAT, please post the link when the news/article comes out, I would love to see it!

take care,
Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

Posts: 1623 | From Ohio | Registered: Jan 2003 | IP: Logged |

dmc
Frequent Contributor (1K+ posts)
Member # 5102

posted

Oh how exciting. I'm looking forward to reading the article. Enjoy the experience.

Posts: 2675 | From ct, usa | Registered: Jan 2004 | IP: Logged |

Tracy9
Frequent Contributor (1K+ posts)
Member # 7521

posted

Oh, I have chills. I'm so proud of you all! I can't wait to see it.....WAY TO GO!!!!!

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005 | IP: Logged |

Leelee
Frequent Contributor (1K+ posts)
Member # 19112

posted

Good for you, Amy! Your mom and your family deserve to be heard.

And how wonderful it is that you are educating people! [Smile]

--------------------
The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr

Posts: 1573 | From Maryland | Registered: Feb 2009 | IP: Logged |

Michael_Venice
LymeNet Contributor
Member # 17254

posted

Hey....

I'm from Warren (Oh). Please, post a link to the article when it's published....

-Michael

Posts: 322 | From Venice, CA | Registered: Sep 2008 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

Congratulations, Amy!!!!! WOOO HOOOO!!!! [Smile]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

Zebco 33
LymeNet Contributor
Member # 18376

posted

Kudos to you and your mom Amy. I admire your courage for coming forward with your story.

I'm sure it will touch many lives. Perhaps someone who never was aware and will be now.

Even though I retired to Paris, TN., my heart lives in Ohio(a suburb outside of Cleveland)

Prayer for you and remember to breath!!
[Smile]

Posts: 145 | From Paris, Tn. | Registered: Dec 2008 | IP: Logged |

bettyg
Unregistered

posted

another "celebrity" of our members here!! AMY & MOM ROCK!! [Smile]

xox

IP: Logged |

bettyg
Unregistered

posted

up for our sunday readers [Smile]

IP: Logged |

Amy C
LymeNet Contributor
Member # 19297

posted

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]

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

Posts: 470 | From Painesville, Ohio | Registered: Mar 2009 | IP: Logged |

Amy C
LymeNet Contributor
Member # 19297

posted

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

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

Posts: 470 | From Painesville, Ohio | Registered: Mar 2009 | IP: Logged |

bettyg
Unregistered

posted

amy, you'll do just FINE! take a deep breath and tell it like it is!!

you're in my prayers to get a good night's sleep; you and family being interviewed. looking for it online [Smile]

IP: Logged |

Amy C
LymeNet Contributor
Member # 19297

posted

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

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

Posts: 470 | From Painesville, Ohio | Registered: Mar 2009 | IP: Logged |

Ocean
Frequent Contributor (1K+ posts)
Member # 3496

posted

That's great Amy!!! I'll look forward to an online version, unless will it air on the Cleveland Fox station???

Take care,
Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

Posts: 1623 | From Ohio | Registered: Jan 2003 | IP: Logged |

ticked-offinNc
LymeNet Contributor
Member # 15420

posted

We are proud of you !

Posts: 261 | From Piedmont | Registered: May 2008 | IP: Logged |

Amy C
LymeNet Contributor
Member # 19297

posted

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

http://shar.es/mhC5

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

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

[ 05-25-2009, 07:14 PM: Message edited by: Amy C ]

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

Posts: 470 | From Painesville, Ohio | Registered: Mar 2009 | IP: Logged |

Tracy9
Frequent Contributor (1K+ posts)
Member # 7521

posted

Cool!!!! I read the story and left a comment, off to watch the video now! YOU GUYS ROCK!!

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005 | IP: Logged |

BlueCheetah
LymeNet Contributor
Member # 18626

posted

Great job Amy! The video was great!

Sending you a round of applause! [woohoo]

--------------------
Lyme, Babesia Microti, possible Bart.

Posts: 173 | From A little south of sanity - PA | Registered: Jan 2009 | IP: Logged |

Amy C
LymeNet Contributor
Member # 19297

posted

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!!

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

Posts: 470 | From Painesville, Ohio | Registered: Mar 2009 | IP: Logged |

Amy C
LymeNet Contributor
Member # 19297

posted

Thanks for leaving a comment Tracy!

I forgot to mention to everyone that they can leave a comment on the news website at the bottom of the story.

Also the news reporter asked us to stay in touch for updates [Smile]

They also talked with us for over an hour and we told them all kinds of info. They didn't air most of it but we told them.

They actually left my house with my Lab 257 book! LOL

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

Posts: 470 | From Painesville, Ohio | Registered: Mar 2009 | IP: Logged |

wtl
LymeNet Contributor
Member # 19883

posted

Amy, everybody looks awesome. You did great.

Posts: 822 | From midwest | Registered: Apr 2009 | IP: Logged |

Ocean
Frequent Contributor (1K+ posts)
Member # 3496

posted

Wow Amy! That was fantastic!!! Good job to all of you, your son did an amazing job for his age, wow!

I hope a lot of people see this, I'll bet you will have a bunch of people contacting you now =)

Take care,
Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

Posts: 1623 | From Ohio | Registered: Jan 2003 | IP: Logged |

Amy C
LymeNet Contributor
Member # 19297

posted

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

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

Posts: 470 | From Painesville, Ohio | Registered: Mar 2009 | IP: Logged |

nenet
Frequent Contributor (1K+ posts)
Member # 13174

posted

Amy this was a great story, I was really impressed, both with how your family handled the interview (I would have been shaking like a leaf and babbling incoherently!), and how well the journalist/reporter(s) and editor(s) treated this issue.

They were really open to the information available rather than starting out from the corner of controversy. Just addressed the facts simply.

Anyway, you guys did a great job, and I posted a comment that maybe 2% of Lyme patients will be able to read, because it seems there are no paragraph breaks in the comment box. Oh well! ; )

--------------------
Dr. C's Western Blot Explanation

Lymenet Success Stories

ILADS Treatment Guidelines

Medical & Scientific Literature on Lyme

"Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease"

Posts: 1176 | From KY | Registered: Sep 2007 | IP: Logged |

Amy C
LymeNet Contributor
Member # 19297

posted

Thanks! I hate when they do that and you can't break up your message.

She was very interested in our story and was really interested in the controversy but of course couldn't air it. But we gave her an ear full so maybe she will pass it on [Smile]

Oh and I thought I would be nervous too. But I think cause it was in my house and there were only 2 of them. They make you feel comfortable too. Then they edit it! LOL

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

Posts: 470 | From Painesville, Ohio | Registered: Mar 2009 | IP: Logged |

bettyg
Unregistered

posted

this is what i'm trying to post; have to register & don't want to lose what i typed ...

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 isn't asking too much!
BettyG, Iowa

IP: Logged |

Amy C
LymeNet Contributor
Member # 19297

posted

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

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

Posts: 470 | From Painesville, Ohio | Registered: Mar 2009 | IP: Logged |

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