LymeNet Flash: WANTED: 100 people to respond to poll questions

This is topic WANTED: 100 people to respond to poll questions in forum Medical Questions at LymeNet Flash.

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https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/32006

Posted by Tincup (Member # 5829) on :

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!

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How much does Lyme cost you per month?

http://flash.lymenet.org/ubb/Forum1/HTML/031944.html

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Have you lost any income due to Lyme disease?

http://flash.lymenet.org/ubb/Forum1/HTML/031946.html

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How many doctors did you see before getting a proper diagnosis?

http://flash.lymenet.org/ubb/Forum1/HTML/031945.html

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How many different medicines do you take a day?

http://flash.lymenet.org/ubb/Forum1/HTML/031947.html

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Have you had any trouble getting insurance to pay?

http://flash.lymenet.org/ubb/Forum1/HTML/032005.html

Posted by Tincup (Member # 5829) on :

For information on the hearing.. please see the site Cheryl just finished for us..

THANKS CHERYL!

http://www.lymeinfo.net/marylandlymedisease.html

Posted by Tincup (Member # 5829) on :

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.

Posted by Trillian (Member # 6857) on :

Up.

I'm still computing cost.

Posted by Wink9 (Member # 4516) on :

Up, since I just caused all the polls to jump ahead of this message!

Posted by Beverly (Member # 1271) on :

I only have one left...cost per month..

Thanks for doing this for all of us and thanks to Cheryl too.

Posted by Lymeblue (Member # 6897) on :

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.

Posted by Tincup (Member # 5829) on :

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?

Posted by Tincup (Member # 5829) on :

Looking for 100...

Posted by Lymeblue (Member # 6897) on :

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!!

Posted by lymemomtooo (Member # 5396) on :

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..

Posted by Tincup (Member # 5829) on :

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!!!

Posted by bg (Member # 46416) on :

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

Posted by Tincup (Member # 5829) on :

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!

Posted by bg (Member # 46416) on :

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

Posted by James H (Member # 6380) on :

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

Posted by lymemomtooo (Member # 5396) on :

up

Posted by Tincup (Member # 5829) on :

Looking good!!!

Thanks!

Almost hitting 100 on some of them now.

Appreciate ALL your efforts.

Posted by lymemomtooo (Member # 5396) on :

up

Posted by cindy_leigh (Member # 3514) on :

I just responded to all of your surveys.

CAn you share the results with us when done?

Thanks!

Posted by kam (Member # 3410) on :

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.

Posted by lymemomtooo (Member # 5396) on :

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..

Posted by Cheryl (Member # 75) on :

up!

Posted by Tincup (Member # 5829) on :

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!

Posted by Tincup (Member # 5829) on :

Anyone else?

Posted by Cheryl (Member # 75) on :

Bump for fishkiller's research.

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*Lyme Disease Information By Email
*Lyme Disease Information Website
*Computer Infection Info

Posted by Michelle M (Member # 7200) on :

quote:
Originally posted by Tincup:
Anyone else?

Yup. I done done it. Thanks for your tireless efforts, m'am!

:-)

Michelle M

Posted by seibertneurolyme (Member # 6416) on :

up

Posted by nannie (Member # 5250) on :

Tincup.

Just be careful in how you word things. Insurance co.'s are trying to blame expense of healthcare on healthcare providers. Cash practices are an easy target, so be forewarned.

And yes. My health insurers lastest Q report specifically stated that they are subject to various state and federal regulations and/or investigations, but somehow, failed to mention to stockholders that they are violating a number of state regs in my state.