WANTED: 100 people to respond to poll questions

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WANTED: 100 people to respond to poll questions (Page 1)

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Author	Topic: WANTED: 100 people to respond to poll questions
Tincup Frequent Contributor Posts: 2234 From: The Moon Registered: Jun 2004	posted 28 February 2005 21:39 To those who have responded already.. thanks! I would like to get at least 100 different people to respond to EACH of the poll questions I have been posting. I will be using the data for the Lyme Disease Bill hearing information.. and possibly.. if I make it through THAT... An article to help others. If you would PLEASE be so kind as to answer the following questions.. I would be most appreciative. All are fairly easy.. except the first one. But I DO need that one too. So if you can do it.. THANKS! Just click on these sites below to post your answers! ```````````````````````````````````````` How much does Lyme cost you per month? http://flash.lymenet.org/ubb/Forum1/HTML/031944.html ``````````````````````````````````````````` Have you lost any income due to Lyme disease? http://flash.lymenet.org/ubb/Forum1/HTML/031946.html `````````````````````````````````````` How many doctors did you see before getting a proper diagnosis? http://flash.lymenet.org/ubb/Forum1/HTML/031945.html `````````````````````````````````````` How many different medicines do you take a day? http://flash.lymenet.org/ubb/Forum1/HTML/031947.html ``````````````````````````````````````` Have you had any trouble getting insurance to pay? http://flash.lymenet.org/ubb/Forum1/HTML/032005.html IP: Logged
Tincup Frequent Contributor Posts: 2234 From: The Moon Registered: Jun 2004	posted 28 February 2005 21:46 For information on the hearing.. please see the site Cheryl just finished for us.. THANKS CHERYL! http://www.lymeinfo.net/marylandlymedisease.html IP: Logged
Tincup Frequent Contributor Posts: 2234 From: The Moon Registered: Jun 2004	posted 01 March 2005 09:30 We are getting there! Thanks! I am going to bring this up instead of the others right now.. to see if we can get to the 100 mark for responses. IP: Logged
Trillian Frequent Contributor Posts: 88 From: Atlanta, GA Registered: Jan 2005	posted 01 March 2005 13:07 Up. I'm still computing cost. IP: Logged
Wink9 Frequent Contributor Posts: 39 From: Ohio Registered: Sep 2003	posted 01 March 2005 13:46 Up, since I just caused all the polls to jump ahead of this message! IP: Logged
Beverly Frequent Contributor Posts: 5448 From: usa Registered: Jun 2001	posted 01 March 2005 14:18 I only have one left...cost per month.. Thanks for doing this for all of us and thanks to Cheryl too. IP: Logged
Lymeblue Frequent Contributor Posts: 168 From: Registered: Feb 2005	posted 01 March 2005 14:46 Tincup: The only thing that I can tell you is that the year that all my family got diagnosed for Lyme (you know $$$$Igenex$$$LLLMD,ABX expenses,etc) The IRS requested an auditory of our personal taxes... THanks god I always keep all the receipts......They were so sorry and perplexed about the lyme situation. The next year bankruptcy.... We all used to have insurance. I've no insurance now My average monthly expense for the disease is $1,100 (suplements, medicines, ct scans, urologist, Psychologist, Psychiatrist,oftalmologist,dermatologist,etc Remember no insurance and Lyme damage every millimeter of your body!! Tincup: pick randomly few receipts and I would scann it for you.That will give support and evidence if somehow we can put together several Patient-Lyme-Financial files.So senators will see with their own eyes : Name: XXXX, dx: Lyme, Test: CT brain scann, total amount: $3,855. Outregeous! Please and let's not talk about the priceless cost of disrupting an american family. IP: Logged
Tincup Frequent Contributor Posts: 2234 From: The Moon Registered: Jun 2004	posted 01 March 2005 16:48 Getting there.. THANKS! Lymeblue... That is a good idea. Unfortunately, I am not able right now to take on the project myself.. totally overwhelmed with stuff to do. I am also not sure we will need it at this hearing (never done this before so I have no clue).. but it would be good to have if we need proof later! Maybe once I get out from under several things sitting on my head.. I can work on it?? I must encourage everyone to document and save records... always... in the meantime. Never know when they will come in handy. Sorry to hear you have had such a rough go of it. I hope the work we do today will improve your situation.. and prevent others from having the same problems. Hang in there. OK? IP: Logged
Tincup Frequent Contributor Posts: 2234 From: The Moon Registered: Jun 2004	posted 01 March 2005 20:23 Looking for 100... IP: Logged
Lymeblue Frequent Contributor Posts: 168 From: Registered: Feb 2005	posted 01 March 2005 23:39 I would be glad to volunteer for free to receive by mail, revise and request more information if needed from each patient-file. But first: We should create a "heavy" questionaire that would guide each participant on how to organize his/her own file. Key papers that would provide social-economic dimensions caused by Lyme. I would include disability papers,for kids school absents,and of course even pictures of patients on I.V abx and all the receipts from drs. office, medications, etc!!! And great would be if many patients as me kept their first western blot on an ordinary lab negative and then the real WB + ones and even adding co-infections findings. Then: Design a database with sensitive fields and run statistics. They ( whatever board-hearing in the future) would only need to check the database on an oral presentation (given by lyme activists) and then request at random files for more support. My hope : to find a fair board-comission with true intentions towards the american wellbeing. My granpa: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9653748&dopt=Abstract Awarded with Le Prince Medal from The American Society of Tropical Medicine and Hygiene 1967 http://www.astmh.org/subgroup/awards.asp Awarded with George Macdonald Medal Awards of The Royal Society of Tropical Medicine and Hygiene http://www.rstmh.org/English/medallistsEnglish.html#Macdonald Sorry if annoyed!! IP: Logged
lymemomtooo Frequent Contributor Posts: 748 From: SE PA Registered: Mar 2004	posted 02 March 2005 11:19 LB. you have some good ideas. Maybe someone or even LDA or ILADS can do such a survey, but right now, it has to be fast and dirty.. Time is running out so if possible can everyone try to help Tincup with this?? Now..Please..Thanks.. IP: Logged
Tincup Frequent Contributor Posts: 2234 From: The Moon Registered: Jun 2004	posted 02 March 2005 14:06 Good news.. I have just finished sending 35 letters to the Senators that were forwarded to me. Thanks everyone! Now.. if we can get the poll numbers up to 100 or more.. I will be thrilled! THANKS!!! IP: Logged
bettyg Frequent Contributor Posts: 1767 From: Central Iowa, USA Registered: Aug 2004	posted 02 March 2005 14:30 TC, thanks a MILLION for all the work you are doing undertaking this and Cheryl's tremendous help in putting it on her lymeinfo site. I have the MONTHLY $$$ to do, will be working on that tonight, but I'm sure I answered your other polls. Betty G., Iowa IP: Logged
Tincup Frequent Contributor Posts: 2234 From: The Moon Registered: Jun 2004	posted 03 March 2005 01:00 Hey BG.. Add a U to your initials and you get.. BUG Yes.. Cheryl's site is great. I am so happpy she is helping so many. Thanks for answering the polls. I will be doing the speaking about how Lyme affects patients. I will be writing up the poll results and sharing them, for ALL time, in the written testimony (they keep those records stored forever and ever).... and will be referring to them in my 3 minute speech. I want a good showing to for the Senators and other supporters who will be there. I could talk about Lyme non-stop for hours.. but with a 3 minute limit I have to really go for it. More than anything I want to do all of us right and be the best that I can. I even decided not to wear my big hat with the fruit on it. Thought they might not appreciate that stuff in the state house. I don't think they have much of a sense of humor. HA! I gotta laugh. GOOD thing Pat Smith isn't in Maryland to see that. Or Ellen Lu... I tend to kinda freak them out when I talk like that. hehehe They would probably have me special checked coming through security to be sure I didn't have the hat! But I will ease their minds. I promise NOT to waer the hat in front of the Senators that day. I will only wear the hat when meeting up with Pataki in NY! IP: Logged
bettyg Frequent Contributor Posts: 1767 From: Central Iowa, USA Registered: Aug 2004	posted 03 March 2005 13:36 TC, you bet I can BUG, I can BEG, I am BIG, I carry BAGgage, and I tend to BOG down things when I have so much to say and just can't find the right words! So now I've use all the vowels with my initials of BG. Just read my daily digest from lymeinfo and see Rose/Cheryl have all your polls shown in them plus this post, etc. .... good deal, now you'll end up with 200 RESPONSES vs. 100! LOL. Cheryl/Rose, thanks for showing also about the one minor extra comma preceding Nancy's name in case anyone else had problems sending to Maryland senators as I had. GREAT JOB LADIES & I'M SHOUTING TO THE WORLD! Betty G., Iowa IP: Logged
James H Frequent Contributor Posts: 388 From: Central Texas Registered: Oct 2004	posted 03 March 2005 13:46 Hey Tincup, We are probably SKEWING your survey results for some questions.... being somewhat of a Lymenet success story. You guys SPARED us the usual 23 doctors, 47 misdiagnosis, 11 unnecessary surgeries, and a wrongful death or two. We got the right Dr. the first time, and have alot of improvement already. After reading the responses of others we are thankful! THANKS EVERYBODY for the pain and suffering you have saved us by taking the time and effort to point us in the right direction! Regards, James IP: Logged
lymemomtooo Frequent Contributor Posts: 748 From: SE PA Registered: Mar 2004	posted 04 March 2005 12:58 up IP: Logged
Tincup Frequent Contributor Posts: 2234 From: The Moon Registered: Jun 2004	posted 04 March 2005 16:29 Looking good!!! Thanks! Almost hitting 100 on some of them now. Appreciate ALL your efforts. IP: Logged
lymemomtooo Frequent Contributor Posts: 748 From: SE PA Registered: Mar 2004	posted 04 March 2005 21:35 up IP: Logged
lymemomtooo Frequent Contributor Posts: 748 From: SE PA Registered: Mar 2004	posted 05 March 2005 09:12 up IP: Logged
cindy_leigh Frequent Contributor Posts: 593 From: CT Registered: Jan 2003	posted 05 March 2005 10:01 I just responded to all of your surveys. CAn you share the results with us when done? Thanks! IP: Logged
kam Frequent Contributor Posts: 2661 From: CA USA Registered: Dec 2002	posted 05 March 2005 10:48 Good idea Cindy. I am interested in the results too. I also am interested in a poll of how long it has taken people to get well enough to return to work or something along those lines. It was one of my first questions when I was finally dx. IP: Logged
lymemomtooo Frequent Contributor Posts: 748 From: SE PA Registered: Mar 2004	posted 05 March 2005 14:53 up for Tincup..I am sure when Tincup is ever able to catch her breath from fighting for these bills, she will post some info..Until then guys, she is in a fight for us and our doctors and lives..And doing the jobs of ten while being infected with critters herself..So just be patient..Ok.. IP: Logged
Cheryl Frequent Contributor Posts: 1339 From: Registered: Oct 2000	posted 07 March 2005 10:20 up! IP: Logged
Tincup Frequent Contributor Posts: 2234 From: The Moon Registered: Jun 2004	posted 08 March 2005 01:05 Yes... I will post the info. MOST likely after the hearing. I still have to do the calculating and writing it up... make 60 sets of copies.. and get them to both hearings. So hang in there if you will. When able I will share it all. OK? Still hoping for 100 reponses to each question!!! One day left to go!!! THANKS all! IP: Logged

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