This message was from SandiB: SandiB Frequent Contributor Member # 1557
posted 09 December, 2005 04:00 PM -------------------------------------------------------------------------------- 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.
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 ______________
6. IV antibiotics denied by Insurance Co. Yes / No __________
7. EM rash seen (or other) 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)
Posted by lou (Member # 81) on :
up
Posted by my2haveit (Member # 7712) on :
Some have thought that the survey questions implied that the person had to have an official diagnosis to respond.
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.