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» LymeNet Flash » Questions and Discussion » Medical Questions » SURVEY- Lyme- IDSA Guidelines-NEED MORE RESPONSES!

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Author Topic: SURVEY- Lyme- IDSA Guidelines-NEED MORE RESPONSES!
Tincup
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It is time for YOU to have a voice in YOUR diagnosis and treatment of Lyme and tick borne diseases.

Please complete this short survey from CALDA (the ones who have done an excellent job in the past with conducting and reporting on surveys, with your help of course), and share it with others so they have a chance to make their wishes known.

NOW is the time to speak up!

[Big Grin]


CALDA News, Events & Blogs

LYMEPOLICYWONK: Speak Up Now! The IDSA Is Revising Its Lyme Guidelines And Patient Viewpoints Matter

04 Oct

The treatment guidelines of Infectious Diseases Society of America (IDSA) are more than 5 years old. That means they will be taken off the National Guidelines Clearinghouse in January.

It also means that the IDSA is now revising those guidelines. According to the Institute of Medicine, guideline developers must consider patient values and preferences to be considered trustworthy.

Our last survey found that 80% of patients would not choose to be treated under the IDSA guidelines. So patient trust in IDSA Lyme treatment guidelines a big issue.

But when was the last time the IDSA asked you what you valued or what you preferred in the treatment of Lyme disease?

The answer is: NEVER. Its time we do something about that. We are conducting a survey to find out what you think is important about treatment options, choices, risks and benefits.

Our last survey drew over 4,000 responses. Lets do it again and remind the IDSA that patient values are central to treatment guidelines!

Link to article where survey can be found...

http://www.lymedisease.org/news/lymepolicywonk/831.html

[ 10-13-2011, 02:17 PM: Message edited by: Tincup ]

--------------------
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Lymetoo
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Hot diggity dog!!

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

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17hens
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That was AWESOME!!!

TC, you are da bomb!!!

--------------------
"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26

bit 4/09, diagnosed 1/10

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Lymetoo
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Why does it ask for "your website?" I don't get it.

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

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penguingirl
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Thanks for the link, Tincup!

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 -

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mom2kids
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Done and done...

--------------------
Down on her knees, she wept on the floor.
This hopeless life, she wanted no more.
Dead in the mind and cold to the bone,
She opened her eyes and saw she was alone. ~Seether

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hopeful4
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Thanks. Just took the survey. It's quick and painless, and can do so much good.
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Tincup
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GREAT!

Good to see you all are getting right on it! Since the IDSA guidelines are "expired" now, it could be any time the new ones could appear. Before they seal our fate again for another 5 LONG years, we must respond.

I am SURE you want to be heard and for YOUR vote to be considered....

So, as Larry the Cable Guy says...

Get 'er done!

[lol]

TuTu... I have no clue what you are talking about? Sorry!

--------------------
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Tincup
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The last survey got 4,000 responses. Let's make it 5,000 this time! Please spread the word!

With conferences this month and other projects in the works, the "help" right now is few and far between, so anything you can do would be GREAT!

Thanks!

[Big Grin]

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RubyJ
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Done, hope it helps.

--------------------
"To eat is a necessity, but to eat intelligently is an art" - LaRochefoucauld

Lyme neuro symptoms for 20+ years.
Infected in Maryland.
Diagnosed with Lyme Jan 2011. (previously diagnosed with CFS, Fibro, peripheral neuropathy)

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Harmony
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Done.

"What does a dyslexic, agnostic insomniac do? A: Stay up all night wondering if there is a Dog."

[lol]

--------------------
Persistence, persistence, persistence!!!
"Nothing in the world can take the place of persistence...
Persistence and determination are omnipotent."
attributed to Calvin Coolidge

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Robin123
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I can tell you they exist. But what about a Tac?
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Razzle
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Done, and I've passed the link on to some others, also...

Thanks!

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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Tincup
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Harmony, Harmony, Harmony...

We weren't, as I just woke up, and after burning many brain cells, now we are.

In Harmony...

[lol]

Goofy you! HA!

Razzzzz... excellent! Thanks!

[Big Grin]

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Jane2904
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Thanks Tincup, ran on over and got er done!!!
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Tincup
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You all make me laugh! I need it too! Thanks!

Tutu, 17, penguin, mom2, hopeful, ruby, robin58574365, razzle and Jane,

Is it possible for you all to keep brining this back up? I have not one, but TWO projects to finish today, and I could use the help!

You'll REALLY like the one project- to be announced shortly! FUN FUN FUN!!!!

Thanks!

[Big Grin]

--------------------
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momlyme
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Took the survey and posted it on facebook!

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

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Jane2904
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Sure Tincup, glad to help!!
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Tincup
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Thank you, thank you!

Just finished sending this out. Fun fun!

The prize for the Racing Lyme Disease Awareness Car has arrived!

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/111543

[Big Grin]

Now, back to work for me!

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Lymetoo
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Will do, TC ... AFTER you tell me what to put for "my website"..I'm stuck. [bonk]

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

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Jane2904
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up
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Tincup
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Tutu said ... "Will do, TC ... AFTER you tell me what to put for "my website"..I'm stuck."

Now that makes two of us! What, where, whatever are you talking about? I have no clue what/who is asking for a website?

More info please.

Thanks Jane!

[Big Grin]

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nhlymeguy
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done
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scsavages
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Just completed it. Thanks for posting!
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Tincup
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nh and sc... thanks!!!

Just heard that between 9 PM last night, when this was posted, and today at 3 PM, less than 24 hours later.... and considering this was over night....

There were already 700 plus responses!

Keep up the good work. We all want and need a voice in this IDSA Guideline development process, and we deserve it! In fact, we have a right to be heard.

[Big Grin]

--------------------
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www.MarylandLyme.org
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penguingirl
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Yay that is great about 700+ responses!

I wish I could do the survey more than once!!

[Big Grin]

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 -

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kellyjk4
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done

--------------------
Take care -kelly
---------------

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sutherngrl
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Survey done!
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Lymetoo
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Well that is weird. The page is different now! It was asking stuff before I could get to the page to do the survey. Just now I was able to do the survey.

[woohoo]

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

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n2themystic
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Done and will send the link to as many as I know.

Thanks for posting!

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Tincup
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GREAT! Thanks all! I keep trying to escape my other work and coming here to get some energy! You all are doing it!

Just heard there are 800 plus now! That was about 100 more in the last hour!

But, I may not get any more updates. Someone just called the contact person feeding me the info, a skunk. So, we'll see! HA!

[lol]

--------------------
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Tincup
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TuTu,

Take 2 aspirin and call someone in the morning- not me!

[lol]

Kelly, penguin, southern and mystic.... THANK YOU!!!!

[Big Grin]

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Dekrator48
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Just completed the survey!

Hope many more do also!

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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Dekrator48
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Post the link on your facebook page!

You can either post the direct link:


http://www.lymedisease.org/news/lymepolicywonk/831.html

or if you have "Liked" the "California Lyme Disease Association" (CALDA) on facebook and you get their info, you can share it from your fb page.

CALDA has changed it's name to Lymedisease.org , which has been it's URL all along.

This is what I wrote when I shared the survey link on my facebook page...feel free to copy and paste this to your fb page if you want:


It's time to speak up! If you ever had Lyme disease, have chronic Lyme disease or are at risk for getting Lyme disease in the future (that's everyone!!), please take this short survey (takes 5-8 min) and let the IDSA know that you want the choice to have long term treatment according to the ILADS guidelines and that it should be up to the patient to decide!! The IDSA does not even think chronic lyme exists (that's a travesty!!) and they think lyme is hard to get and easy to treat...wrong! Support the ILADS guidelines and the right for Dr's to use their judgement, make a clinical diagnosis, give the patient choices, and treat long-term when needed!!

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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JJ29
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Done.....thanks tincup!
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Tincup
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Dekrator,

Thanks for doing the face book explanation. I am NO good at that, so your effort is much appreciated!

JJ,

Thank YOU! Glad you got 'er done!

[Big Grin]

NOW... I just heard back from the skunk (I'm going to get in BIG trouble for that- don't ya know)- actually missed the communication exact time- but there are now over 1,000 responses!

Yee haw!

You all are burning up the airwaves... or whatever runs the computer survey thingy! HA!

Less than 24 hours and over 1,000!!! Amazing!

Thank you!!! And keep it coming!

[group hug]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
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penguingirl
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Bringing this up so more can take the survey!

[hi]

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 -

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dogmom2
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done
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Dogsandcats
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I answered all the questions and I think i passed!

--------------------
God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.

Billy Graham

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Diana 85
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Done!
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Tincup
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Penguin- thanks!!!

dogmom, dogsandcats, and no dogs Diana..

THANK YOU!

[Big Grin]

--------------------
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Robin123
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Wow - 1000+ in 24 hours!! And I think everyone passed! My question: usually we say that something's gone viral when it spreads quickly, but in our case, can we say it went bacterial? An inquiring mind wants to know...
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James1979
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finit!
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penguingirl
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Scorpio - your daughter totally counts as a lyme patient! Her experiences are just as valuable!

Do it again!! The more input the better.

Not that it is not sad for adults to have lyme, but it really breaks my heart when young children have to suffer too.

[Frown]

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 -

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Jane2904
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up
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penguingirl
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I just checked out the IDSA's agenda for their Annual Meeting - not much about lyme disease huh? I guess talking about bedbugs is more important. I guess lyme is really not an epidemic after all.... UGH!

[cussing]

http://www.idsociety.org/Index.aspx

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Tincup
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Hey hey,

Tttttthanks to all who are doing it and sharing it!

Scorpio,

Your daughter certainly does count!

BUT... I think I remember the survey saying it was for people 13 years old or older? I am not at all sure of that, especially the age limit, so do check.

It also is set up for only one response per computer, so please do not try to answer for more than one person per family. We want to keep the data clean and good for the results to be published.

I haven't heard from the skunk how many more have been filled in, but when I do, I will share!

Jane, thanks again!

[Big Grin]

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

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Tincup
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Just as I pushed my send button to post that last post, the skunk reported in.

Drum roll please....

We hit the 2,000 mark already! Hot dawgs, hot dawgs, hot diggity dawgs!

Keep sending the link to the survey to friends so they can share it with those they know with Lyme. The bigger the population reporting, the better.

[Big Grin]

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

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RubyJ
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Bumping up,
does it say anywhere how long the survey will be open?

--------------------
"To eat is a necessity, but to eat intelligently is an art" - LaRochefoucauld

Lyme neuro symptoms for 20+ years.
Infected in Maryland.
Diagnosed with Lyme Jan 2011. (previously diagnosed with CFS, Fibro, peripheral neuropathy)

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Tincup
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Ruby,

Thanks for bumping it up!

They are trying to get as many responses as possible as soon as possible. No deadline date as of now, but it could end at any time.

The data has to be processed so it can be written up to deal with IDSA who is in the process of writing its new Lyme guidelines, supposedly.

Did that make sense? Hope so!

[Big Grin]

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

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Silverwolf
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Just took the Survey, hopefully they can understand thru my muddled brain fog.

Thanks <<<<< Tincup >>>>> for providing the link [Smile] !

Jus' Silverwolfi

--------------------
2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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Tincup
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Hey Silver! Good going! Thanks!

[Big Grin]

I heard from the skunk this evening and was told there are some really interesting stats coming from the survey participants! More so than I could imagine. Interesting!

The skunk is very pleased with all the responses, but hopes that everyone will send the survey link to everyone they know. Many more responses are needed!

So let's keep trying, and thank you for doing so!

Gotta make the skunk happy!

[lol]

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

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gardenpeace
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I just tried, but it wouldn't let me go past the 2nd page. Any advice? Thanks!
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Tincup
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Hey Garden,

Welcome to LymeNet!

Thanks for participating- or at least trying to! I just dropped the skunk a note asking what you can do in this situation, so once I hear back, I will let you know.

Bringing this up for the weekend wild bunch on Lyme Net.

[Big Grin]

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

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Cassie
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Hey Tincup & Friends, yes your seeing right. It,s your long lost friend. Completed the survey.

Have been really ill so forgive me for not keeping in touch.
Will give an update soon as possible

Take care [group hug]

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

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Tincup
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Hey hey Cassie!

It IS you!!! So nice to see you! So sorry you've been lower than a snake's belly though. Darn it all!

Can't wait to chat when you are feeling up to it!

[group hug]

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

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abby-do
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Took the poll couple days ago and posted it to several Facebook lyme pages....gotta get that count up :-)

--------------------
I am not a Doctor and I never played one on TV, I'm just a lab rat with Lyme trying to rid myself of this horrible disease.

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Life+Lyme
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Done! Thanks for the link.

--------------------
You name it, I've got it.
Full-time medical anomaly.

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rosebuds mom
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Done!!!
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imagine2
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Done! Thanks for posting, TC.
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Tincup
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For abby-do, Life+Lyme and imagine,

Thanks ya'll!

And for rosebuds mom,

Thanks yous guys.

[lol]

Ok, my northern accent isn't that great, but I AM trying to please!

[lol]

Keep sharing! All ya'll!

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

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showmemom
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Done!
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Tincup
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Good for you, showme! Thanks!

[Big Grin]

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

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Tincup
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Up for more responses to survey!

[Big Grin]

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

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Tincup
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Just heard from the skunk, who has been traveling, and there are approximately 2,800 responses now!

Of course we want more, more, more!!

So please complete the survey if you haven't... and send this out to everyone you know with Lyme disease.

Thank you!

[Big Grin]

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

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Deb133
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Just completed..thank you!
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