posted
NEW IMPORTANT ADVOCACY ANNOUNCEMENT ON BEHALF OF THE LYME-LIFE 12/06/2005 - Sandi Lanford, Director of the Florida LIFE-Lyme, says the Florida Lyme Bill has been drafted, but there is a legal/legislative requirement that they submit a document listing the number of persons suffering from Lyme Disease in the State of Florida. This requirement needs to be done before the bill gets to a vote.
If you suffer from Lyme Disease, please e-mail [email protected], so she can send you the form which needs to be completed and returned to her to compile the number of Lyme sufferers in Florida. She states "this is your opportunity to respond to all the frustrations you have experienced due to the lack of healthcare open to Lyme patients. Please don't let this opportunity go by".
Please respond as soon as possible as the deadline is by the end of December 2005.
Posts: 991 | From USA | Registered: Aug 2001
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I have emailed the information you asked for! It was wonderful to be able to do something back for you after all of the time you have spent helping me with my lyme disease not to mention saving my life.
Everyone, please take the few minutes to do this for Sandi. She has spent countless hours for 4 years helping others find direction w/this disease and undoubtably saved countless lives.
She is truly one of our soldiers and it's OUR opportunity go to bat for her and DO something in return to thank her. She needs every story!!!! Go ahead, start writing !!!
Hugs around the world for Sandi Curley
Posts: 982 | From Florida | Registered: Feb 2002
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posted
Great thing to do. Maybe you might want to edit this post and use all caps for subject, get more attention that way. And someone could go thru and pm the FL lymies to help sandi, et al.
Posts: 8430 | From Not available | Registered: Oct 2000
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Given the # of "transplants" here in Fl from the NE...NY and CT...boy, those #s should be high...unless they don't KNOW this is what is causing their problems...
Neighbor, friend, "had" lyme...short term doxy...now RA and husband has Parkinson's.
Need I say more?
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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posted
Lou, thanks for the idea. I just finished pm-ing the Florida folks I could find in the first 99 pages of the member directory, excepting our local group members.
I'll try to get the next 100 pages later.
Sue G.
Posts: 61 | From Florida, USA | Registered: Aug 2005
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Here's a copy of the survey to send back to Sandi, [email protected]. Please respond as soon as possible as the deadline is by the end of December 2005.
Florida Lyme Advocacy 'Patient's Survey Form' � Lyme disease Patient Survey:�(Items 1 through 6 are most important if no other information provided )
1.Dollar amount ($) self-paid due to denials or lack of coverage�� ____ Cost of Miles traveled to doc (approx...) for out of state travelers to Lyme doc's___________.� Miles traveled (approx...)___________.
2.Number of years since onset of illness���_________ �
3.Number of doctors seen before accurate diagnosis of Lyme�� _________
4.Number of mis-diagnoses (may specify)��__________ �����(�MS, ALS, Lupus, RA etc. )
5.�IV antibiotics prescribed by doctor��Yes / No�� ______________
8.Length of IV treatment (if approved)���Yes/No�__________
(Still undergoing state how long)�����__________ Mo/Yrs.
9.�Length of oral treatment����Yes/No _____________
(Still undergoing state how long)�����__________ Mo/Yrs.
Improvement or recovery seen: (Please share any additional information specific to obstacles faced or greater recovery seen on more intensive, long-term treatment if applicable) Florida Lyme Advocacy, 31 N. 3rd Street, Floor Up, B, Fernandina Beach, FL 32034 (904) 491-7617 (home) / (904) 491-3887 (work) / [email protected] ***All patient names remain anonymous*** (for Florida Lyme Advocacy purposes only to clarify information)
Posts: 61 | From Florida, USA | Registered: Aug 2005
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For the Florida Lyme bill survey, you are NOT required to have a diagnosis. The questions in the survey are just to gather info, not "screen" respondents.
Thanks to all those that have made the effort to respond to either or both of them.
Posts: 61 | From Florida, USA | Registered: Aug 2005
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posted
To the top.... Please respond if you are a Floridian, even if you weren't bit in Florida...you still need a Lyme literate physician in your state.
Posts: 991 | From USA | Registered: Aug 2001
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