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» LymeNet Flash » Questions and Discussion » Medical Questions » Stick a Fork in 'em- They're DONE!

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Author Topic: Stick a Fork in 'em- They're DONE!
Tincup
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We have a saying around these parts... when referring to someone or something that will no longer be of any use to anyone, for any reason...

Stick a Fork in 'em- They're DONE!

We need to STICK A FORK in the IDSA guidelines and the ducks who compose them and promote them. We need to let them know they are DONE.. once and for all!

The IDSA guidelines and the ducks who follow them are what originally got ME in trouble and are what KEEPS me in trouble.... even 20 years later! If they are allowed to continue to publish this garbage... how many more folks will suffer.. and for how many MORE years?

They are the root of all evil in the Lyme community and the basis of the problems that got YOU sucked into this nightmare! They dictate to doctors, insurance companies, and disability groups. They limit our researchers, redirect available grant money to bogus studies, and basically destroy MANY MANY lives.

Enough is enough.

We need to actively STOP the IDSA guidelines from being published and/or used against us.. and let OUR guidelines rule!

We need to intervene NOW! We need to let the ducks IN THEIR HOME DUCK PONDS know we mean business. I mean HEY... even the ducks have bosses at their colleges and facilities and someone who can put a lid on their misdirected shanannigans.

After years and years of IDSA NOT working, we must

STICK A FORK IN "EM- THEY'RE DONE!

--------------------
www.TreatTheBite.com
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www.MarylandLyme.org
www.LymeDoc.org

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kelmo
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Can you give me a hint on how to go about doing that? Give me the fork, baby!
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Tincup
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Get yer forks ready...

This guideline (IDSA) was prepared by:
Gary P Wormser, Robert B Nadelman, Raymond J
Dattwyler, David T Dennis, Eugene D Shapiro, Allen C Steere, Thomas J Rush, Daniel
W Rahn, Patricia Coyle, David H Persing, Durland Fish, and Benjamin J Luft.

It appears we have at least three of these ducks sitting in ONE pond..

New York Medical College, Valhalla, NY.. in Westchester County.. which is about a 1/2 hour from NY CITY!

Do you think the New York Medical College would mind several thousand people having a picnic on their campus?

And I'll personally provide the forks!

[Big Grin]

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www.MarylandLyme.org
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Tincup
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It appears to be a perfect place for a picnic!

http://www.nymc.edu/welcome/welcome.asp

We could really make a statement..

"The university has 1,350 full-time faculty members and 1,450 part-time and voluntary faculty who teach, conduct research and provide patient care at 28 hospital affiliates.

The extensive network of affiliated hospitals includes large urban medical centers, small suburban hospitals and technologically advanced, regional tertiary care facilities."

--------------------
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Carol B
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How about are the forks being personal medical records like mine-that show Yes, in 2004 I tested positive for LYME and was treated for 3 weeks accroding to IDSA guidlines.

AND then in 2006 still tested positive, and according to CDC criteria had lyme for over a year- which added incontinence,IBS, cognitive dysfunction,insomnia,seizures,ataxia, depresssion, and arthritis to my list of ailments. I know there's more to the list but the names are too complicated for me to spell.

I mean, cases like mine-isn't this PROOF the IDSA guidlines are woefully inadequate. And I know I am not the only one to fall into this category.

This whole garbage pail that is my life now is because of them. JERKS, A-HOLES, CREEPS, IDIOTS,
EFFIN' DUCKS.

Disgusted and disillusioned in BAlto,
Carol

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Tincup
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Hmmmmmm...

One of Dr. J's hearing dates is Thursday, Sept. 7, in Conneticut.

For folks traveling a long distance to the hearing and who will be in the general area anyway.. maybe we could have our picnic the following day..

Friday, September 8, 2006

That should give support groups and individuals enough advance notice and time to arrange bus, car pools, train or plane arrangements.

Any ideas?

I am leaving in the morning for the hearing in CT. Dr. J did ask that no one wear Lyme green .. but I am pretty sure in that request he didn't want us going up there naked either! So I MUST go pack and get organized!

Might those who belong to other Lyme groups share this post with others? I would LOVE feedback and ideas.. as I am flying by the seat of my pants on this one... and in the seat of my pants, well.. there ain't too many brains located there!

THANKS!

I will anxiously await all replies.. and will check in after returning from the hearing!

[Big Grin]

PS.. May I state clearly.. When I say "stick a fork in 'em"... I do NOT mean that literally!!!!

I want to protest and kick duck butt... but we must do it peacefully!!!

[Razz]

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hopeful4
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I'm relatively new to this. Is it the same guidelines as the ones found at:

http://www.ilads.org/guidelines_idsa.html

National Guideline Clearinghouse:
Summary of IDSA Guidelines for Lyme Disease

at the ILADS (International Lyme and Associated Diseases) website?

If so, this is a summary. At the bottom of the page is a link to the full guidelines, about 14 pages long. It's the first time I've actually seen these guidelines. Gonna have to print them.

Thanks for this post.

Hopeful4

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lymemomtooo
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No Hopeful it is the one by the Infected Duck Society..

You cited the ILADS one -International Lyme and Associated Disease Society..Gosh I hope my pea brain got that close to what it stands for..The ILADS one is saving lives..

The dumb *#@*$ one, or ducks for short is the one causing pain and suffering and putting folks like Carol in jeopardy..

Splendid idea Miss Tin..If it doesn't cause a divorce, I may be in!!

AND IF I CAN COME, I WILL AGAIN WEAR MY LIME GREEN
M R DUCKS SHIRT ..

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trueblue
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TC,
Great idea and enough lead time! [bow] (and coincidentally I will be a scant half hour away on September 8th!)

So, definately, count me in and let the Forking begin!

Please, please, please can we do this?


(If anyone will be passing through, or originating, from Rockland... I'd like to meet up and go together if we could.)


So do I need to get more lyme green clothes? Or will my Havana Daydreaming shirt do? [Wink]
Ok, that and my lyme green panties? (and some banners or signs) [Big Grin]

--------------------
more light, more love
more truth and more innovation

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dontlikeliver
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My fork is ready, just not sure where and how to stick it. Please advise.

DLL

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Ann-OH
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I just came across this article by the usual suspects. So you know where they used to be coming from. Worse goes to worst! These people have the most influence for the new regs.

(I split it up to make it more readable)
Ann - OH

Date: 1997/04/12
(Arch Intern Med. 1997;157:1267)
Editor's Correspondence - March 24, 1997

A Lyme Disease Controversy: Duration of Treatment
In his article, Sigal[1] provides a thoughtful summary and discussion of the problems associated with the misdiagnosis and mismanagement of Lyme disease (LD), and we agree with most of his conclusions.

However, we were puzzled by the statement in the table that ``there is a strong suggestion that 10 to 14 days of therapy may be insufficient'' in early localized disease.[1]

We are unaware of evidence to support this claim. Indeed, this recommendation seems particularly surprising since Sigal indicates that ``no proof exists that...more than 10 to 14 days of treatment is necessary'' for early disseminated and late (chronic) LD.

To our knowledge, only 3 published studies[2-4] have examined the duration of treatment in humans with early (North American) LD. In the first study,[2] coauthored by Sigal, no outcome differences were shown for 49 patients with erythema migrans who were treated with tetracycline for either 10 or 20 days.

We reported the results of a retrospective study[3] in which patients with erythema migrans appeared to do equally well 1 year after receiving doxycycline for either 2 or 3 weeks.

(Sigal may have been unaware of this study when he incorrectly stated in the table that no comparative trials of doxycycline with tetracycline have been performed; our study[3] also described no statistical difference between the outcome of patients treated with either doxycycline or tetracycline for 2 weeks.)

The results of these 2 antibiotic duration studies differ somewhat from those of Luft et al.[4] In that study, a worse outcome in patients with erythema migrans was observed after 1 week of treatment with azithromycin compared with 20 days of amoxicillin.

However, it is unclear whether the worse prognosis in the azithromycin group was due to the shorter duration of treatment with this medication, an inadequate dose, or the lower efficacy of the macrolide class of agents, in general.[5]

Animal systems of Borrelia burgdorferi and experience with other spirochetal infections, including European Lyme borreliosis, suggest that the short-term use of antibiotics is likely to be effective in early LD.[5,6]

While various criticisms could be made regarding the methods of some of the studies mentioned herein (use of a low dose of tetracycline,[2] retrospective analysis,[3] and comparison of separate antimicrobial agents[4]), it has certainly not been established that more than 10 to 14 days of therapy is helpful for patients with erythema migrans.

We are concerned that the recommendation to treat patients for a longer period will have the exact opposite effect that Sigal desires.


Elsewhere in his article, he cites the ``toxic effects and expense'' of long courses of antibiotics.[1] Guidelines appearing in the Annals of Internal Medicine[7] and Medical Letter on Drugs and Theurapeutics[8] suggest 10 to 21 and 10 to 30 days of treatment, respectively, for early LD.

We would welcome the conduct of further studies to determine the optimal duration of treatment for various aspects of LD.

However, in the absence of these data, we see no reason to recommend the routine use of more than 10 to 14 days of therapy for early LD.

Robert B. Nadelman, MD
John Nowakowski, MD
Gary P. Wormser, MD
Valhalla, NY

--------------------
www.ldbullseye.com

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Tincup
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Kelmo.. do the extra ideas help? Thanks for making me THINK this out a bit better!

Carol.. a GREAT idea for a fork! And it IS proof positive the IDSA guidelines DON'T work! You are absolutely RIGHT!!!

Hey hopeful..

I know it is confusing for folks.. sorry. The IDSA.. and I LOVE Lymemomtoo's way of saying it... the Infected Duck Society.. anyhow..

Their guidelines (Infectious Disease Society of America) have been the ONLY ones used for years on end... unfortunately. Right now they are "officially" withdrawn from the publishing place.. as they have expired. New ones are suppose to be published eventually.. and from what I've been told.. the "one pill cures Lyme" theory will be added to the guidelines.

I'm sorry.. even a 12 year old knows better! It is NOT going to be a document that will help any of us.. not at all. And it will promote the idea that insurance companies can get away with only providing a minimal treatment... when many of us need more.

So not only have we (and insurance companies and docs all over tarnatioin) been using them (forced to) in the outdated and unsuccessful form... they are STILL being held over our heads and are being used to deny payment for meds.. payment for doctors visits... and they limit our treatment drastically.

Bottom line..

If Camp A (IDSA) was right.. there wouldn't be a Camp B (ILADS).

Camp B's guidelines were based on Camp A's guidelines, in part, but they also address coinfections and chronic forms of the disease.. which are not even acknowledged in the Camp A version. They are the International Lyme and Associated Diseases Society's (ILADS) Guidelines... which you provided a link for, ever so kindly. They allow the physician.. along with the patient.. to determine treatment protocols in individual cases. This is 10,000 times better than IDSA OLD ways.. as no two Lyme patients present exactly the same... and we MUST have some flexibility for that reason.

Soooo.. since most of us would prefer to be able to have some input in our own treatment plan.. and be able to take meds that we KNOW are working... and not be dictated to by guidelines that are restrictive and failing WAY too many folks... we NEED the ILADS guidelines.

Perhaps someone.. dear Tree, where are you?... can provide a link to the Camp A, Camp B article for you and others to read? I tried to put the Lyme controversy in simple to understand format because at the time I was pretty Lyme brained and was having problems explaining it to others myself.

````````````````````````````

Oh yeah Lymemomtoo... I would like to see not only the Lime green clothes there on EVERYONE.. but YOU in your Lime Green TICK SUIT!!!! What a BEAUTIFUL site she was at the rally!!!

[Big Grin]

--------------------
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www.MarylandLyme.org
www.LymeDoc.org

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trueblue
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This is your revised version from the newbie links, TC, is this the one you want up?

CAMP A and CAMP B - The LD Controversy http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

--------------------
more light, more love
more truth and more innovation

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TerryK
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Carol B - I'm so sorry this has happened to you but I do think that bringing medical records like yours to light will carry more weight than anything any of us could say or do.
Terry

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trueblue
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I hope you don't mind but I also linked this to the Activism section of the forum.

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=8;t=000302


hey, you never know, sometimes people look there. [Wink]

--------------------
more light, more love
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kelmo
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I would love to PM you and figure out how this could be a good use of airfare and time. I can write letters, but if it would be a bigger statement to have a lawnfull of sick people who "need assistance", then we'll have to save up for that. Keeping in mind that most of our treatment involves out of pocket expenses.

I guess what they need to know is that their inept guidlelines cause insurance companies to deny benefits, creating a hardship on those who are suffering needlessly.

Just reading the plethera of herbal remedies, machinery, therapy, medications, travel time to excellent LLMDs just to have a HOPE for a functional life....Good gosh!

We have CHILDREN who are missing out on life because of these rediculous guidelines. That's a crime of humanity.

I admire all you do TC

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Tincup
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Ann- Excellent article.. and appropriate to this discussion .. very much so! I hadn't seen it, but now have it filed. Thanks for sharing it!

Yes.. our "sitting ducks" in this case.. who can be found on the New York Medical college campus.. would be..

Robert B. Nadelman, MD
John Nowakowski, MD
Gary P. Wormser, MD

All three are authors of the IDSA guidelines.. and one or more possibly.. gotta check my notes.. but SOME of the IDSA authors were involved with the failed Lyme vaccine.. which used grant money that possibly took away from what might have been used for GOOD research to help us???

Anyhow...

Three ducks should require a three-tined FORK.. eh? So they would officially be the "salad" at our duck picnic.

[Razz]

Trueblue, Trueblue.. What AM I gonna do with you?

You said.. "So, definately, count me in and let the Forking begin!"

HA! I just spit my pecan pie on the computer screen... thanks to you! Ok.. not really pecan PIE exactly.. but I have to eat nuts.. so I pretend a lot!

```````````````````````````````````````

Yo ho to you, Ms. don't like liver..

You said.. "My fork is ready, just not sure where and how to stick it. Please advise."

Funny girl you are! HA!

Perhaps I should refrain from answering that question directly.. especially here on the board. This IS.... after all... a FAMILY site!

[Wink]

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

Interesting to note- I've already recieved several email responses.. and so far no one has a reason NOT to persue this!!!

There was one concern raised that we might get tossed in the pokey?

Well.. as Jimmy Buffet says..

"If you ever wonder why you ride the carousel...

You do it for the stories you could tell."

And if we ALL got tossed in the pokey... they would need several tractor trailers to haul us away... and... several more to carry our wheel chairs and our DAILY meds!

[Big Grin]

Ok.. I REALLY need to pack and get busy. But PLEASE keep all the ideas coming. I DO want all points of views!!!

Thank you! And wish me luck as I sit in the hearing in CT ... and have to keep my mouth shut while Shaperio is defending himself and the IDSA way of doing things.

If I were you.. I'd bet money on ME not being able to keep my mouth shut!!!

[tsk]

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SuZ-Q
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Pass the fork - and make it a big one - like the one you use to carve a turkey or a roast Duck!! I'd like to stick it to 'em (and to a few ducks that have seen me and my daughter). Sign me up.

I haven't been to jail. At least it would be a new experience.

[ 20. June 2006, 03:18 PM: Message edited by: SuZ-Q ]

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shazdancer
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I'm liking your idea, TC. Let's keep talking about it, perhaps over lunch in Hartford, say, day after tomorrow?

See you there,
Shaz

PS -- the key to keeping quiet at the hearing: take lots of notes, and share with a friend.

PPS -- Valhalla is some 3 hours from Hartford. Just to keep in mind.

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trueblue
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Mmmmmm... pecan pie...


About the pokey...
at least the friend I'm staying with in NY is an attorney. [Big Grin]


um... about keeping your mouth shut... there's always duck tape, hahahaha! Sorry, I've been out in the sun and my brain is fried. [Cool]

--------------------
more light, more love
more truth and more innovation

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Tincup
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Duck tape! Now why didn't I think of that!!! HA!

I am getting some wonderful responses. THANKS!

Now.. while I am away.. can anyone who is interested in helping let me know? That is IF this plan comes together?? Tell me what you can do... ok?

I need to know details about permits.. IF one is even needed, etc. And if there is any public area nearby.. out front.. etc.

And to the person who emailed me and told me I could probably wear lime green panties when I went to Dr. J's hearing and no one would notice...

Oh contrare!

I'm having some panties specially made.. with Shaperio's picture on the back side.

Made especially for flashing!

[Big Grin]

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www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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lymemomtooo
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Ok..do not flash them. I have not saved up bail money yet..

I can see another nail biter coming..

And you know that somehow I will be there in Sept if at all possible..And if it works, my friend lymie will be there..Has a tick ever been in the pokey? actually my goal will be to keep lymie out of one.

Well, you know one look at me and they will throw me in the psych ward.. [dizzy]

Let's see..3 meals prepared daily, clean clothes, vacation from home..Entertainment changes minute by minute..Free meds..I might even be able to tell them all they have lyme disease and cause a revolt..Might work..Ha..

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Pantsinsocks
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I think one of the most effective results of such a "picnic" demonstration would be the media attention that it can be used to draw.

Imagine it hitting the AP wire. One key to effectively utilizing the media is to be prepared with "press packets" that make it easy for reporters.

They would contain a "one pager" that defines the crux of our issue...then have assorted "personal stories" that put a human face on the tragedies resulting from the IDSA guidelines. Plus copies of pertinent supporting research for the ILADS guidelines.

When done in concert with up front press releases to newspaper, radio, and tv, it could make quite a splash.

It's important to have a clear defining goal for what we'd want to acheive by such an event.

Yes, it could simply be to vent and shake our fists at the Ducks on the 5th floor Ivory tower, but I'd suggest that would be underutilizing potential power of such an event.

We need to ask "Who is the target audience? " and "What do we want to accomplish with them?".

Similarly, there needs to be a coordinated message to answer the reporter's question "So, what exactly is it that you want?".

I'm sure we can come up with that...I'd suggest it be pro-active, rather than just re-active.

As Dr. J in NC has said, its important to keep down the "shrill factor". He's right, because it makes it too easy for them to write us off. Stick to the facts, the stories, the science...after all, they are all on our side.

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just don
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Here is MY suggestion TC,

Wear the panties alright, make sure 'everybody' sees them, good idea.

Ever hear of wearing them on the "OUTSIDE " of your slacks or shorts???

That would make a more definite statement than flashing somebody, and likely less jail time!!!

And everybody THERE would know exactly what it meant!!!

Meanwhile carry a placard with his picture there too,,, inside a big red circle with a slash thru it!!!

--------------------
just don

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Carol B
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Are there ticks in New York? [Eek!]

Are we going to have to sit on the grass for this "picnic". [Roll Eyes]

You can see where I'm going with this can't you? We should all sit around in a circle like Conastoga Wagons spraying DEET on the ground with signs that say we need protection from Ticks and the IDSA.
[Mad]

Just brain storming-and that can get a bit weird for someone with Lyme Disease. One thing I can tell the IDSA is they're right- I do not have POST Lyme Disease because I never got rid of it in the FIRST PLACE Thanks to them.

[cussing]

I can't wait for this thing to happen . But you know-it's going to be hard to give them a piece of my mind-because then I won't have anything left!!!!

Let's sic our very own Godzilla Tick on them. [lol]

Blindsided in Balto,
Carol

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FightFireWithWater
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Those going to the hearing, please pass the following on to Tincup when you see her tomorrow:

Even though Dr. Jones may not want to be involved himself given his situation, he would be an incredible information resource for anyone contemplating the possible role of civil disobedience. He marched with Martin Luther King, Jr.! He can tell you how important the tone of the action is. How important maintaining our dignity is. The necessity of discipline for the safety of everyone. The importance of every detail in conveying a coherent messsage.

It is essential for anyone considering this to do their homework thoroughly. This path has extreme challenges for the neuro-challenged and chronically ill with possible long-lasting re-percussions. Expert training for civil disobedience is available through highly reputable non-profit service organizations and is essential before making the decision to actively seek arrest versus bearing witness to a smaller group's act of civil disobedience.

There must be absolute clarity in terms of a message and how to best convey it and the audience to whom it is directed.

More later.

--------------------
"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

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lymemomtooo
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Since I really am not interested in jail time, if I can participate, I will definitely want to follow all laws and rules..

I am hoping this can be accomplished without hand cuffs..No lymies need to be in jail and away from meds..

For those that do not know my sense of humor, I was just kidding about the 3 meals, clean clothes, etc..

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5dana8
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I say picnics, sit-ins ,candle light vigils ect.. don't grab the national attention or headlines.

We had a wonderful lyme ralley with famous lyme doctor's and kids and patients,great duck hats and tick costumes at a very good location, not much press coverage at all. [Frown]

I say flag burnings...

maybe an effigy burning of of some of the members of the CDC might grab some national headlines.

Maybe some big signs and lots of yelling. And shaking fists in the air.

Ok. I am taking the 70"s reference out because I don't want to muddy the waters with another era or reference to another completely different movement which isn't health related.

I am not talking about over turning cars or destroying public propery here.

Taking away our doctors. Humiliating and intimidating them by-dragging them thru the mudd in public courts is a call for some real outrage.

Imagine a lymenet where there is no "seeking doctor section" This isn't too far off. Dr. J is the only LLMD in the southeast for many people.
If you think this hearing won't change his treatment plans,think again.

The govenment has left us out to dry. They are sweeping us under the rug. They have made it quite clear they would prefer we die a slow death quietly at home

I say this calls for a some anger mixed in with some educated speakers ect..

I hate to sound like a raving maniac(I am just the opposite, a quite person) But unless it is sensational the GP public doesn't care and it's not going to make headlines.

We held a quiet candle light vigual locally here against the war. Nanda. A local bake off got better coverage.

If you are mad, I say lets look as mad as we feel.

Sit-ins and quiet demostrations just don't cut it.

Why?

Because only the passer-by's or the few people there get to see it or know what's going on.

It is not going to get much coverage on the news at all. This is a pathedic commentary of our society. But it's true.

Now you are all free to come and call me a fanatical maniac and poo all over this post.

*edited to take out the 70's reference but still intended to add my 2 cents.

[ 22. June 2006, 08:03 PM: Message edited by: 5dana8 ]

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5dana8

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David95928
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The presence and speeches few national celebrities who have Lyme would help focus media attention. Amy Tan and Daryl Hall come immediately to mind, but I am sure there are others. We need NATIONAL media.

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Dave

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FightFireWithWater
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Unfortunately, the last few years celebrities have been kicked around increasingly for speaking up and getting involved. We're very fortunate to have had a few willing to go public and/or contribute financially. I don't think that we should hold our breath thinking that someone other than ourselves can rescue us though. Of course it would be great if one or more celebrity could join us at Lyme rallies, etc.

Ultimately, time is on our side in terms of public officials. When enough well-placed people see their "lives as they knew them end" (paraphrasing)...maybe things will happen. The question is how to keep this generation going until then.

--------------------
"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

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FightFireWithWater
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And what do you think the Yippy type demonstrators of the 70's accomplished, Dana, other than to trivialize their issues and turn people off by their less-than-mature behavior?

I'm not talking about the serious protesters who were rarely featured in the media. That skewed preference of the media for the outlandish is of course at the center of the problem of being able to get one's message across effectively. There has to be enough to pique interest and imagination while maintaining seriousness of purpose.

The sheer danger and sacrifice that Martin Luther King, Jr; Nelson Mandela; and Gandhi's followers endured combined with their remarkable human dignity partially explain their ability to capture the public eye and prick the conscience of the world. Films of these pioneers in human rights are highly instructive and so inspiring. It might be worthwhile getting ahold of a couple at your video store or library.

[ 22. June 2006, 03:29 PM: Message edited by: FightFireWithWater ]

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"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

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5dana8
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fightfire:

Can't really remmeber it was before my time.

And don't want to distract this thread with vietnam war references or the civil right movement either.

Just speaking my mind.

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5dana8

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hatsnscarfs
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I'll be at the hearing in September. Couont me in for the forkfest. I'll bring some skewers.

Tinnie, Dr Jones did ask that we not wear Lyme green and not bring banners, T shirts etc. to the hearing. He didn't mention anything about ducky hairdos. The duck might obstruct viewing for people behind you so leave the duck at the hotel.

Wish I could be there tomorrow, will await your report.
hats

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snowflake
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Hmmm,

This gives new meaning to the old saying....

"Keep your fork.... the best is yet to come."

http://www.smallchurch.com/esmfork.htm

--------------------
We have only this moment, sparkling like a star in our hand... and melting like a snowflake. Let us use it before it is too late.

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FightFireWithWater
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Dana,

Hmmm. I thought I was responding to **your** remarks on the 70's.

As to the Civil Rights movement, it would be very difficult to discuss Civil Disobedience and how to use it to our advantage without discussing the groups who succeeded in part by using it. The group Americans are most familiar with, and who used the technique to great effect, was the group Martin Luther King was associated with. We're looking at options here, trying to educate ourselves, to learn from others, to see if this technique fits our needs.

--------------------
"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

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FightFireWithWater
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Tin-Tin,

Since you asked for ideas....

What about putting out a call for anonomously-submitted skits, actions, teach-in programs, etc
to be considered for this event. The plans could either have or not have a Civil Disobedience component that might or might not be used as we assess the situation. Our celebrity writers with Lyme would receive a special invitation to submit an entry.

The selection committee could be made up from the following: the celebrity writers with Lyme, people working in the media with Lyme or a family member with Lyme, patients or a family member with successful experience with such events, ILADS/LLMDs and anyone else the community wishes to have input. Those wishing to participate in the event would also be consulted at some point.

Entries might first be sent to a post office box to be given a code number and then distributed to the selection committee.

--------------------
"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

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lymemomtooo
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up
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sizzled
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FightFireWithWater, excellant suggestions!

Now, if I had a brain, I might be able to help organize this! [dizzy] I will bring this post up for TC to see.

Thanks for ALL these suggestions!

Yes, a clear and concise message......a constructive means of getting OUR WORDS HEARD!

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FightFireWithWater
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Thanks, glad you think so, Siz!

I didn't see your post until just now. I hope Tincup saw the replies here when she got back. She seems to be busy with another project now.

Hoping that there will be a post box address soon for those who don't use email or don't like to post on the web to send their ideas. There is not all that much time to get this all together.

--------------------
"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

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Tincup
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Hey fighter..

I am with ya... sorry I can't post a lot... but I AM reading the responses.

Just busy trying to do 495 things at once. Running back and forth... hard to keep up. Plus getting phone calls and TONS of emails about the projects.. so I am sorry I am so far behind. Also...

Bad storms here the last couple of days. SIX inches of rain so far.. with thunder, etc. So computer has been off a good bit.

Now it's bed time... and I NEED my bed tonight!

Thanks all...

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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FightFireWithWater
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T.,
Thanks so much for the message.

Boy, do I wish we could clone you so you could work on all the projects 24/7.

Please pace yourself. You have been under so much stress with all those trips up and down the coast!

Wishing you restorative sleep and rest, time to collect your thoughts, and a stop to the heavy rains in your area. You are going to start to mildew what with all the damp weather you've been in these last weeks! [Wink]

[ 26. June 2006, 07:05 PM: Message edited by: FightFireWithWater ]

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"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

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