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» LymeNet Flash » Questions and Discussion » Medical Questions » Results- Lyme hearing in Annapolis, MD- YES!

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Author Topic: Results- Lyme hearing in Annapolis, MD- YES!
Tincup
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It was BEAUTIFUL!

About 150 people showed up from all around MD and a few from other states.

About 20 speakers were heard and did fantastic... about 6 or so were doctors (great job).. including our wonderful Dr. C from up north.

One duck snuck in... promoting Hopkins! But 5 had signed up.. and I guess they saw the crowd.. shivered in their boots and headed back out.

Even a Senator who had Lyme... and a Commissioner came to testify in our behalf.

I stunk... got my knickers in and uproar ..
But made a couple of points.

For those who came.. THANKYOU!

For those who wrote.. THANKYOU!

For those who were there in spirt.. THANKYOU!

And for those who helped here.. and LymeInfo..

THANKYOU!

Now.. gotta go! Exhausted. Got oysters and clams to eat.. only meal today... and get to bed so we can do it again tomorrow!

OH.. it is on Maryland Public TV tonight at MIDNIGHT..

And Fox 45 News will do a talk about it..

And the newspaper that has 5 sister papers in surrounding counties will be writing about it.

Thank you all again.

More news tomorrow....


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lymemomtooo
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Tincup, I bet it was great..Been wondering and worrying all day..

I am sure you are giving yourself a bad rap..I know you did a splendid job...

Worried about the Harford Co. contingent..Driver got lost this am, not sure if he can find his way back..Take care of JG tomorrow if she is able to go..

Prayers are with you..lymemomtooo

[This message has been edited by lymemomtooo (edited 10 March 2005).]


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Lymetoo
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Sounds wonderful! Thanks for posting this, Tincup!

------------------
oops!
Lymetutu


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Aniek
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Well I didn't think anybody stunk today. It was incredibly moving hearing all of the testimony. It was also very obvious that a number of Senators were moved.
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JillF
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YES YES YES!!!

I am SO HAPPY!!


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Ann-OH
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http://www.delmarvanow.com/apps/pbcs.dll/article?AID=/20050310/NEWS01/503100302/1002

Goal: More focus on Lyme disease
Residents to lobby for prevention efforts, research in capital

By Monique Lewis
Daily Times Staff Writer

Times Photo by Todd Dudek
Jackie King of Delmar moves a 4-Poster Deer Treatment Bait Station for tick control at her house Wednesday. The station sprays the deer's neck and head, which is the tick's main nesting spot, with a chemical only harmful to the insect. King, whose children have Lyme disease, and others will travel to Annapolis today to lobby for research and prevention support.

SALISBURY -- After more than a year of discussions, members of the Lyme Disease Association and 60 others will drive to Annapolis today and lobby to state legislators for prevention and research on the widespread tick affliction.

The association's Eastern Shore chapter will go before the Senate's Education, Health and Environmental Affairs Committee today, and the House of Representatives Health and Governmental Affairs Committee on Friday. Both meetings will feature first readings of bills.

Senate Bill 596 is designed to protect doctors who treat late stages of Lyme disease in Maryland to do clinical diagnosis and administer long-term antibiotics.

"If the regular 21-day antibiotics don't work, then a lot of insurance care providers and doctors won't provide anything else," Tony Caligiuri, chief of staff for U.S. Rep. Wayne T. Gilchrest, R-1st-Md., said Wednesday.

Caligiuri has a 9-year-old daughter suffering from the disease. He said the family had to travel to New Jersey to find a doctor who could treat it. He said it's surprising that there is such a lack of specialists because Maryland has the highest number of incidents.

For this reason the association's House Bill 1323 was written in an effort to establish a task force that will study the disease and report back to the legislature.

In an effort to get a head start on prevention, the Lyme Disease Association introduced the "4-Poster Deer Treatment Bait Station" in November. Developed by the Department of Agriculture, one can cover up to 50 acres, said Jackie King, the Eastern Shore association co-founder.

"They can eliminate 98 percent of the tick population in a three-year period," King said Wednesday.

The station sprays the deer's neck and head, which is the tick's main nesting spot, with a chemical only harmful to the insect, the association said.

Pamela Andrews, another Eastern Shore chapter co-founder and vice president, takes care of her 32-year-old daughter, Leya Schiller, who was infected at the age of 18 in 1991, Andrews said.

She thinks outings with high school friends exposed Schiller to the disease. It was 10 years before a Baltimore doctor properly diagnosed her daughter, Andrews said.

Andrews met co-founders Jackie and her husband, Dale King, in January 2003 at a Lyme disease seminar. Andrews said that it was then in a room of more than 300 that she realized she and Schiller were not alone.

"It's a problem up and down the Eastern Shore and Delaware, too," she said.

The association has submitted a panel of expert and personal testimonies to the legislature in the hopes of pushing their bills through. Andrews said she was hoping for one of those "good days" for her daughter, "but it doesn't look like she'll be able to go. ... She is too sick."

All four of Dale and Jackie's children have the disease. They are 2, 5, 7 and 10. Jackie said that as long as they're in treatment, they're fine. The whole family has been bitten. For now, Dale and Jackie are symptom-free.

"Our main purpose is helping others," Jackie said. "It's time the government got involved with helping people."

Reach Monique Lewis at 410-845-4656 or mlewis @salisbury.gannett.com

Originally published March 10, 2005


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marblenose
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Thank you thank you thank you!
Blessings,
Marblenose

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monkeyshines
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Thanks to everyone who made the trip and stood up for ALL of us!!

You guys are awesome

monkeyshines


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kare
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Sounds like it went well! Thank You
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Beverly
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Thank you for letting us know and I sure you did just fine...
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lymemomtooo
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Just received another report..They say it was wonderful and that Tincup did not stink..

Also that a Vet did a great job also..Explaining about that tests for dogs were better than the human ones..

I heard it was emotional, educational and well received..

Good luck to our warriers, for Day 2!!!!Stay well!!!


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DR. Wiseass
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I'm so happy to hear everything went well yesterday!

Tincup - thank you for all your hard work in getting things organized - so that you could present the views & opinions of those who couldn't attend.

What's good for Maryland is good for all of us. We are the UNITED states...and I know that when Maryland wakes up and starts taking better care of its Lyme infected citizens, then the rest of America will eventually be shook awake as well.

Thanks to all of you.

I'll be in prayer today, and trust that all will go well.

Blessings,

------------------
DR. Wiseass - not a real doc - just a real wise ass.
www.twistoflyme.blogspot.com


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Ann-OH
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TinCup should take a bow for all her hard work (though I believe she loved every minute!)....
as should
-all who testified,
- all who showed up,
- all involved with making Lymnet Flash Discussion the best way to get the word out to the troops,
- all of those who got the message here and submitted personal information
-and all who sent messages to all the legislators.

There is strength in numbers:
(quote)
From the Sierra club news - March/April 2005

One phone call is a lot more important than you may think! A long-time aide in Washington explained that, if a congress person receives many calls at their office, the aide will actually call the congress person on their cell phone, even if they're on the floor of the Capitol, debating. When asked, "How many is a lot?" her response was, "About 20." Your one call can make a difference. (end quote)

Congrats to all of us!
Ann - OH


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ShelleyA
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Saw the snip-it on Fox 45 last night.....

Sounds as tho docs won't be persecuted for treating...........therefore.........ALL docs will have to learn about real lyme and it's treatment.

Maybe now people won't have to travel so far to be treated.

A BIG thanks to all of you.


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MammaLyme
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Tincup was wonderful. She testifed on behalf of all the sick people with the tick borne illnesses. Then she quoted great stats to back up her testimony

WAY TO GO GIRL!


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Aniek
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quote:
Originally posted by MammaLyme:
Tincup was wonderful. She testifed on behalf of all the sick people with the tick borne illnesses. Then she quoted great stats to back up her testimony

WAY TO GO GIRL!


I thought that was Tincup! I thought that was one of the best testimonies! It was clear, concise and on point.


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deb obrien
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tincup - you did a wonderful job and i'm sure we will all reap the benefits in our respective states..
thank you,
deb

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HEATHERKISS
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Your'e the best!
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Tincup
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Yawn...

Giggle..

Yawn...

Or shall I say... yawn.. giggle.. yawn? Oh well. I was jut happy that when I was called on I didn't cry.. or freeze.. like notrmal. Today was the seconf day of the hearings. There were about 20 folks there supporting us.. who came from very far away.. and about 8 or so speakers. Everyone did a grand joh. Thankkk you Ann for posing the mesage.

I wish I would have had time to spend visitng with more folks. And I sure wish ew had more thna 3 minutes to put 20 years into testimony, Today we had the pleasue of the health dept coming to speak. They were opposed to having a task force.. although we stated we wanted to work together for the goo of the community.

They don't want to comce to our party. And they are suppose to be the laeders of the task forece. NOT a friendsly attitude.. ya think? I liked everyoned speech yesterday and today and don't think either day could have been any better. Many people worked VERY hard anmd just knowing 150 people showed up was wonerful.

Thakn you to everyone who wrote.. came.. worked hard her e suporting the bill and gaaave of themselves.

If we keep working together.. we will make a difference.

------------------
If you get the choice to sit it out or dance...



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Tincup
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Look what YOUR comments did...

An EDITORIAL!!!

YOUR comments make a difference... a BIG difference. Even from other states!!!

They said.. "More recently we have received a number of comments regarding coverage of Lyme disease. A letter to the editor drew nine comments the first day and half a dozen more the next. And we are still receiving comments. Most of the comments are simple words of praise for helping to raise the awareness of the disease." etc. etc. (see article below).

Please keep up the good work. This paper is in the process of doing ANOTHER article on yesterdays hearings... with pictures!

http://www.stardem.com/article.asp?article=2872&paper=1&cat=140


And this...

http://www.stardem.com/article.asp?article=2752&paper=1&cat=138



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Tincup
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And this..


http://www.dailytimesonline.com/apps/pbcs.dll/article?AID=/20050310/NEWS01/503100302/1002

------------------
If you get the choice to sit it out or dance...



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arg82
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You did an awesome job with all of this, Tincup. CONGRATS!

--Annie

------------------


Click here to join Lyme Pals.

Click here to see my Lyme journal.

Lyme Out Retreat Information Webpage

[This message has been edited by arg82 (edited 11 March 2005).]

[This message has been edited by arg82 (edited 11 March 2005).]


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mulelover31
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Thank you SOOOOOOOOOOOOOOOOOOOO MUCH,TinCup!!!! What would we do without you your work for us all but most of all your great sense of humor!!!!!!!!!!!!!!!!!! Many blessings from above Mule
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Lymetoo
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I KNEW Tincup didn't "stink!" She's a STAR!!

------------------
oops!
Lymetutu


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hwlatin
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Great Job Tincup, the one thaing that is really bothering me though about all of the good press we are getting, is very little talk about human transmission.

I know it takes one step at a time, but recent articles I have read show human transmission could be as high as 3 to 1 vs vector transmission.

Not to take away from all the great work that has been done by Tincup and others, just wanted to bring it up.


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laserred
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A BIG "HIP HIP HOORAY FOR TINCUP...YOU GO GIRL!!!!!!!!

THANKS for all your effort and hard work....now for the other states to stand up and take notice.

SUPER JOB! Feel appreciated and don't be so humble!
-laserred_


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MammaLyme
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To Tincup:

THE PENNY WORKED WELL!


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bg
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hwlatin, see my post today about the NIH committee meeting, and you had Calif. reps on this committee.

May I suggest that you contact them and tell them of your/others concerns about the transmission of lyme? I believe there were 2 women representing Calif. One had a hyphenated name.

If you go to their web site pages, perhaps you might see who else is shown as being involved in this this specific BUDGET committee chaired by Ohio's Ralph Ragula, sp?

TINCUP, thanks for all the newspaper links you showed & your feedback from the hearing. I see my one article was published!

Thanks to ALL OF YOU for your hard work in getting these lyme disease bills organized and hopefully to be PASSED as well as the OTHER STATES who have attempted this as well!

bettyg, Iowa


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Lymiedad
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Good job. I would love to hear more.
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MammaLyme
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I myself testified that I passed it on to my husband since we were not told that it was related to Syphilis and stated that he has been on an IV for six months and many other medications.


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aklnwlf
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Dear Tincup,

Can't find the words to express my gratitude for what you and others are doing for those of us who are too ill or financially devastated by this disease to attend.

I'm sitting here trying not to blubber and possibly short out my keyboard!!

Thank you.

Am sending a 911 upward.


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JillF
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Yes, thank you TC!

But, it looks like we still got some work to do.

I have heard that they (senators) did not hear any testimony stating that MD doctors refused treatment and that the State Health Dept. does not believe this is a need for more $ on Lyme disease in MD and that they are doing their part already...

So, what can we do to turn those around?


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Barrie
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I have not been on lymenet for several weeks and sorry I missed all of this. I am a Maryland (Harford CO.) resident and sorry to say that the people I run into w/lyme keep repeating the same old story, nothing seems to have changed. I am so hopeful things may change. Are there transcripts available? Will it be repeated on MPT? I read the Baltimore Sun daily and did not see any mention of this. I am very sorry I missed this and thankful to everyone who was there.
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