Yep.. I would rather give birth to a full grown cow than do that again!

BUT...

The dust is settling.. and we not only accomplished our goals of getting a bad bill pulled off the voting table at the last minute... a bill the ducks took apart, rewrote, and tried to bully their way through the voting process against our wishes... but we got LOTS more.

1. Not one person I called hadn't heard, read, or talked about Lyme disease since this got going and we started making a fuss. They said they were all paying close attention to the matter and many never knew it was such a problem... and do now.

I even have requests to send literature to individuals in the Annapolis offices so they may give out OUR literature to people who inquire about Lyme. Many folks had their own Lyme stories and/or knew someone who had trouble with it... but they had figured it was an "odd" case.. not the norm. But they now know better.

2. We made wonderful contacts and now know who is REALLY on our side and willing to help... with no strings attached.. and who isn't. VERY important. You can see a duck coming.. but not always a wolf in sheeps clothing. It is nice to make them walk around "naked in the wind" now with their ding a lings ringing letting everyone know they are headed our way.

3. We have folks in HIGH places wanting to continue the efforts of education and agreed that a bill of the sorts the ducks tried to sneak past us was NOT in the best interest of Lyme patients now or in the future. I think the kind of "education" the big guys are talking about .. well, let's just say... I wouldn't want to be wearing the Health Departments shoes right about now... or Hopkins latest foot wear. Or heaven forbid, have web feet!

4. We have opened lots of doors and have gotten the word out there and nearly EVERY Senator and Delegate has admitted in one way or another that Lyme is serious business and SOMETHING needs to be done about it.

5. We have an invite already to try again next session if we chose with more help than before. And we have folks in Annapolis who WANT to join in and help.. where that wasn't as easy 2 months ago. It was REAL hard to break through as a matter of fact... and only a handful of folks tried to help.

6. We, as individuals and support group leaders, have come together as a state and a "team" and worked sooooooooo well with others. Everyone played nice and everyone worked hard... and we did it TOGETHER.. with YOUR help. Even when we agreed to disagree.. it was a NICE thing.. no bad stuff.

7. We have gotten the attention of insurance companies and have them thinking about ways to work with us instead of deny deny deny. We have documents showing how they can save moeny and help us in the process. Actually 5 different insurance companies came to the hearing to SUPPORT our bill. That is nearly unheard of.. and it means BIG time progress.

8. We worked WITH the Board of Physicians at the last minute to kill the bill and made nice contacts there. I think we may be able to work WITH them too! That should help the doctors who want to help us... be protected.

9. We now have an "audience" with the health department also.. and some good folks watching them VERY closely... making sure we are not jerked around.

10. We now have some experience as to what to do and not do.. so we can share it with others and help other states.

Soooooooooooooooooo.. everyone of you who put in an effort, helped get us at least 10 good things!

I am sure there are more good things.. but to tell you the truth.. I am soooo tired.. I think I will get to bed now and see you guys later.

And please know.. not only did you help all of us.. your kindness and support kept me going.

Just promise me you will be there when I am asked again to help... and instead chose to give birth to that COW!

THANK YOU!

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

It's nice to know that our emails worked! We do have some kind of say, I guess.

We had a beautiful group of folks working together.. and they deserve a LOT of credit. They did REAL good! We weren't given time to organize or even meet in person before being thrown into this mess.. but it seems luck was on our side because everyone pitched in doing everything they could.. and it all came together.

And.. to have to be stuck with me all this time.. I have to feel kinda sorry for them. I can be a bug in the stew pot for sure. But THEY did a LOT of the work.. and I just had the big mouth. I think I will have to withdraw my request for a raise now that I think about it. Big mouths don't get paid much these days I hear.

It's about 11:30 PM. Only 1/2 hour till it is official. Keep your fingers crossed that some of the stink bugs don't pull a fast one! It's been known to happen!

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

PLEASE, PLEASE , PLEASE come to Pennsylvania! so many people here sick, most people i know. some dx, some i just STRONGLY suspect. and because they are not nearly as sick as me, prefer to "trust" thier drs, think i am a very rare case,even when they know what happened to me. and what is weirder, is more people than not , know people who did get extremely ill and either, because it might not be as obvious to them just how sick i am, don't think i am as sick as the "rare extreme" case they know, or even if they do realize just how sick i am, still think we are rare. although i so have to say, like one friend whose ex-wife got very sick with lyme, serious heart stuff in a young woman. had to be hospitalized, got agressive treatment. and then was well. others, got dx when they first became seriously ill, hospitalzied in most cases, and agressive i.v. treatment. and became well. so, even knowing me, hearing what happened to us, still not afraid.

and there are even those who did know, or did find out soon enough, and prefered to believe i was not as seriously ill as i am, it was fun attacking me when i could not defend myself. or my children. never apologised. some who if they apolgised, will look like the destructive people that they are, although, if i had been instead diagnosed with something like advanced cancer, would have forced then to apologize or look even worse.

and then there are still those that smirk. such as the pediatric infectious disease specialts, who i knew as a fellow mom at the private quaker school my daughter attended in elementary school when her lyme was undx and she needed to be in a small school- not that we could afford it. i ran in to her at a healthfood store i regularly shopped in. - what was she doing in a healthfood store? the ridiculed me for being a "health food" mom. she embarased my daughter in front of her other friends at a late night Odessey of the Mind meeting.

it was her turn to bring snack and she walks in with soda cans of cola. Pepsi? and this is a late meeting - cola? in her angry tone with her having no reason to be angry at me, but common , in front of my daughter and her friends - remember, nasty angry tone - "is this alright for "____" to have?! is this alright to give her ?!! are corn muffins OK?! is she allowed to have a corn muffin?!

i never made fun of the food they brought in or did any attempt to disway my duaghter from helping herself from what ever she wanted. she just didn't like sugar very much. she had babesia as well as lyme, courtesy of my breastmilk. i just spent extra and bought things like cheese puffs and a cool juice - watermelon, from the healthfood store. and they did ridicule my choices some times in front of the kids, or even to them. i would not do this to thier children.

i was confiding in her as well as her very close friend, also a mom from that group. the crulty of so many towards me, twighlight zone. distroyed me. harmed my children. and many of the are "drs" who "care" about children. lots of ugly people.

I have to go out of town for several days.. so I can't spend much time here today... but wanted to leave you with this paper.

And a BIG thank you for all your help!

Tick Tock Went The Legislative Clock

Lyme disease patients and volunteer advocates breathed a sigh of relief as the Legislative clock ticked away, coming to a stop before their bills were enacted into law. After being submitted, both bills were gutted and rewritten by the Senate's Education, Health, and Environmental Affairs Committee, headed by Paula Hollinger.

The Senate Lyme disease bill was originally designed to assist patients by providing
treatment options, insurance coverage, and protection for doctors from unjust persecution for treating chronically ill patients. Originally a four page document, it was reduced to a half page by Hollinger's committee and was stripped of the original provisions intended to assist Lyme patients with their struggles.

The House's Task Force Bill was altered to the point that it failed to even mention the
words ``task force''. After leaving Hollinger's committee, which was influenced by Johns Hopkin's members, the bill's original version was reworded requiring the Board of Physicians, an agency that oversees health care providers licensing, to ``develop and disseminate'' specific antibiotic guidelines for treating patients with tick borne infections.

Advocates agreed, both bills, if passed in the amended versions, would do more harm
than good and rallied to prevent the bills from becoming law.

Delegate Norman Conway, the House bills' original sponsor, kept his promise and
refused to allow the new versions to cause additional problems for citizens across the
state. To the relief of thousands of Lyme patients watching the clock tick, tick, tick, the revised bills did not become law.

Patient advocates are pleased that problems surrounding tick borne diseases are now in
the limelight. The grass root efforts, with the assistance of the legislators sponsoring the bills, have paved the way for more public awareness for this often debilitating disease.

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

quote:

---

Originally posted by Caryn:
WoW! This is So GooD to Hear!

PLEASE, PLEASE , PLEASE come to Pennsylvania!

so many people here sick, most people i know. some dx, some i just STRONGLY suspect. and because they are not nearly as sick as me, prefer to "trust" thier drs, think i am a very rare case,even when they know what happened to me.

and what is weirder, is more people than not , know people who did get extremely ill and either, because it might not be as obvious to them just how sick i am,

don't think i am as sick as the "rare extreme" case they know, or even if they do realize just how sick i am, still think we are rare.

although i so have to say, like one friend whose ex-wife got very sick with lyme, serious heart stuff in a young woman.

had to be hospitalized, got agressive treatment. and then was well. others, got dx when they first became seriously ill, hospitalzied in most cases, and agressive i.v. treatment. and became well. so, even knowing me, hearing what happened to us, still not afraid.

and there are even those who did know, or did find out soon enough, and prefered to believe i was not as seriously ill as i am,

it was fun attacking me when i could not defend myself. or my children. never apologised. some who if they apolgised,

will look like the destructive people that they are, although, if i had been instead diagnosed with something like advanced cancer, would have forced then to apologize or look even worse.

and then there are still those that smirk. such as the pediatric infectious disease specialts, who i knew as a fellow mom at the private quaker school my daughter attended in elementary school when her lyme was undx and she needed to be in a small school-

not that we could afford it. i ran in to her at a healthfood store i regularly shopped in. - what was she doing in a healthfood store? the ridiculed me for being a "health food" mom. she embarased my daughter in front of her other friends at a late night Odessey of the Mind meeting.

it was her turn to bring snack and she walks in with soda cans of cola. Pepsi? and this is a late meeting - cola?

in her angry tone with her having no reason to be angry at me, but common , in front of my daughter and her friends - remember, nasty angry tone - "is this alright for "____" to have?! is this alright to give her ?!! are corn muffins OK?! is she allowed to have a corn muffin?!

i never made fun of the food they brought in or did any attempt to disway my duaghter from helping herself from what ever she wanted. she just didn't like sugar very much.

she had babesia as well as lyme, courtesy of my breastmilk. i just spent extra and bought things like cheese puffs and a cool juice - watermelon, from the healthfood store. and they did ridicule my choices some times in front of the kids, or even to them. i would not do this to thier children.

i was confiding in her as well as her very close friend, also a mom from that group. the crulty of so many towards me, twighlight zone. distroyed me. harmed my children. and many of the are "drs" who "care" about children. lots of ugly people.

[This message has been edited by Caryn (edited 12 April 2005).][/B]

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Caryn, I had to break up your story so we late stage lymies could read it. Please hit the enter button more often to double space your 6-8 lines of text only....thanks!

TC, you mentioned I think 5 insurance companies there, was BC/BS/ Wellmark there? Just curious....thanks for updates.

Thanks for all your hard work!!!

I discovered this stuff was going on too late to do much. I did my part to notify everyone you listed and then I emailed a notice to the NCLDF late Sunday night but it wasn't until late Monday night that it was able to go out. Sooo, I don't think we were too much help but I'm glad so many others were on the ball and this thing died.

I copied your message and sent it on to the NCLDF so that the members can be notified of the result of all this hard work. I stated that I thought you had written the notice but...I wasn't certain (no one signed it). Just wanted to TRY to credit the author.

Ok, gotta go. Library clock running out. I almost got kicked out a little while ago but it gave me an extension. I got lucky.

Take care Panhandler and thanks for all your hard work. Someday, I want to grow up to be just like you...wait...let me think about that statement...!!! Haha!

Cheers!

Is there any medical oversight of Lyme doctors?

Are these legal proposals available for us to read online?

Hope you are doing fine. I only KINDA remember one insurance company name right now that was signed up in the book.. and I think it was BC/BS maybe Caremark??? Is there a Caremark? Or is it the Wellmark you mentioned? Sorry.. I do not know. But the office that sponsored the bill should have some paperwork on it.. and maybe can send you somewhere to find out if they don't have it themselves. Check with Delegate Conways office perhaps? Sorry I don't know all of them.

HEY...

REAL FUNNY TWO.. you goof ball. I saw that... "Someday, I want to grow up to be just like you...wait...let me think about that statement...!!!"

I owe ya one slick! tee hee hee

Sorry you were tired up. I missed you. I could have used your eat 'em up tiger attitude here. But that's ok. We will ring your bell on the next go around. Good to see you! And thanks for trying. Nice idea.

Liz.. good to see you are interested! I am sorry to say you have come to the wrong person to get GOOD answers this time. I try.. but truth is.. we did this flying by the seat of our pants.. and didn't have experience.. just had to learn as we went because it was tossed out at us after the fact. The politicians submitted the bills then we were asked to help. No time to prepare.

You said.. "Is there any medical oversight of Lyme doctors?"

Not sure what you mean exactly. In this state we have no HUGE problems with LLMD's getting nailed yet. BUT.. we have only a couple at the most LLMD's. The trend to try and nail them is headed south... and they have had some sort of problems here.. just not as bad YET as in NY and other places. But we believe it is just a matter of time... and that it would be good to try to be prepared ahead of time and get protection for them if we could now.. instead of an all out war later.

You said.. "Are these legal proposals available for us to read online?"

We have a wonderful person here who jumped in and volunteered to help us all with putting a site togehter for folks to get info. How in the world she does it.. I sure don't know... but it was GREAT!

Please feel free to check out her site.. one that has been helping folks for YEARS.. and was just recently updated and looks very nice.

Oh.. Cheryl is her name.. and I am sure most folks here kow of her work and wonderful efforts. We would be lost without her.

Here is the site. You should find some answers here...

Lyme INfo:

http://www.lymeinfo.net/marylandlymedisease.html

You said.. "Are there any means of legal participation outside ILADS?"

Again.. I am sort of lost here and don't know quite how to answer your question. ILADS, from what I understand, is not really personally involved in the legal stuff.. unless I am mistaken?? They can support it if they chose.. but they do not start it... or do it as a "thing" they do normally.

Again.. I may be wrong.. or may be misunderstanding your question.. so ask again if I am making the situation worse for you with my stupid answers... OK?

I will be away for a while.. so if I don't respond.. ring my bell by posting for me in about a week and I will try to answer.

My main point is.. do try to learn and if someone can help.. we will get you to those folks. I wish I knew more.. and could give you great advise.. but this is not my "thing". Just trying. OK?

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

It seems like so many states are starting to work on Lyme issues. We are really on a roll.
Ellen

quote:

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Originally posted by liz28:
I'm new to the political side of this health issue, and am curious about certain factors.

Is there any medical oversight of Lyme doctors?

Are these legal proposals available for us to read online?

Are there any means of legal participation outside ILADS?

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