Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Below is a well thought out (online) survey prepared by a person with Lyme disease. If you can.. please respond and feel free to share the link with other patients.
TC
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Hi,
My name is Alison Schwarzwalder and I'm a graduate student in Public Health at Columbia University. For one of my courses I'm conducting a survey with patients who have been diagnosed with Lyme disease as part of a larger project to characterize patient care and physician interaction with regards to this specific illness.
If you have been diagnosed with Lyme at some point in your life and have 15 minutes to spare, I would greatly appreciate if you would complete my online survey at:
I'm not collecting any personal or identifying information so your responses will remain confidential. In addition, if you are in contact with other Lyme patients who might also be interested and willing, please pass along this email as well.
Please feel free to contact me with questions or comments at: [email protected].
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Just for her information, we could not complete the survey because my daughter has never been diagnosed with Lyme. She has bartonella and babesia. No borrelia.
Our doctor considers that a significant separation due to CDC reporting.
So, she is infected with tick-borne bacteria, which may have come from a mosquito or an earlier head lice infestation...vector unknown.
Too bad it didn't give that option.
Posts: 2903 | From AZ | Registered: Feb 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I completed it
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Finished the survey. I hope she'll let us know what she learns from the responses.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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bettyg
Unregistered
posted
i completed this 43 Q/A in 45 minus.
disappointed she didn't show anything for lyme sxs prior to 1980.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sorry kelmo...
I also wondered about coinfections.. but then it is technically a Lyme survey.. and it would be MUCH longer and harder to get folks to respond in detail to all of those questions too. Plus some may not know which things go with which diseases too.
BettyG said ... "disappointed she didn't show anything for lyme sxs prior to 1980."
I would assume she couldn't include or ask for information about a disease that wasn't "reportable" till then... therefore not officially recognised?
Just a guess.
Thanks to can't and cbb for doing it!
I have asked her and she said the results will be shared! I am very interested in hearing about them.
It will provide good info to use for articles and reports. Glad you all took time to do it.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Done pretty good one!!!
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Did the survey. Hope others do also.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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bettyg
Unregistered
posted
i forwarded the info to my lyme list group of 60-70, so she should get many more from these folks as well.
GOOD, tincup; we'll receive the results!!
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
did the survey. not sure if it took into account having to go through diagnostic process 2x-
was accurately diagnosed initially- thanks to a classic EM, but insufficiently tx'ed.. THEN came the diagnostic problems....
felt like the questions and my answers may not have intersected right because of that sequence..
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
Done!
Posts: 4258 | From over there | Registered: Jul 2001
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
Hey TC glad you finaly did come back to the boards! I am not up to being on here much aT ALL ... but I DID TAKE THE survey!!! got to rest some now.. l8r Linda D
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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posted
did the survey yesterday. Got the info from lymeblog.com
Very interesting. Anxious to see the results.
hugs, perplexed Posts: 324 | From Lexington, KY, USA | Registered: Dec 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Tree and Lou456789...
Good to see you did it. They are looking at several different things.. and it seemed quite good.
BettyG..
Good for sending it out to others. I'd be real interested in the results.
Dill pickle...
I am surprised you are able to do anything after that long trip! But good!
Sizzzzzzzzzzzz..
Bet you gave them the what-for too! ~smile~
Livin... I thought I'd been gone a while.. and am here on and off.. but had missed seeing you. I tried to answer your post earlier.. but don't have the details you needed.. so suggested maybe rewording it a bit. Hope that helps get replies! Good to see you!!
Helen 654321...
Thanks for taking time to do it. Good for you!
Perplexed..
Your eyes are just so lovely! HA! I get dizzy watching them!
Thanks everyone for doing it.
The results will be interesting I think. It is nicely set up too.. and not TOO difficult.
posted
I could not enter when I first became ill because the choice of dates did not go past (into the past) 1980: how old is this person that she doesn't she realize some of us have been sick for longer than sometime after 1980?
ESG
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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bettyg
Unregistered
posted
tc, did you write this woman and find out more WHY/her motivation for doing this; where the results are going, etc.
1 lymie from here PMed me asking these questions. please answer what additional info you might know about person who wrote/collecting our answers. thanks ice cream queen!
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posted
I did the survey, and also emailed her a comment. She is very responsive and emailed right back. So I think any of you with comments can let her know. Also including the issue of the date of acquiration.
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
BettyG said..
"tc, did you write this woman and find out more WHY/her motivation for doing this; where the results are going, etc. 1 lymie from here PMed me asking these questions. please answer what additional info you might know about person who wrote/collecting our answers."
I got the original note about this from a friend. Even so I still contacted the person doing this personally... as you know I rarely do a survey myself.. nor promote them or anything else if I am at all concerned of the purpose or where the results will go, etc.
I got a very nice reply and details.. then wrote back and bluntly said something like..
Tell me why it is being done and why I should have others do it.
I also said I was asking so I could protect the patients and our doctors.
Again I got a detailed response which sounded genuine and ok.
Then I went online and read the entire survey to see what types of questions were being asked and to see if they matched what I had been told.
I also checked to see if any identifying information was requested about patients or if there were any situations where doctors were named.
I was satisfied that the survey was not only well written and would be able to gather good data ... but it wasn't "fishy" or weird.
I also wrote and asked if the data could be shared once the survey was completed and they freely said yes... so I figured there was no hidden motive.
So.. would I bet my life on this person if I were hanging upside down from a bridge by my toes?
Maybe not.
But from what I could tell.. this survey seemed ok to do... and I think it would be safe for both patients and our doctors.
By the way.. it took me 2 days (on/off) to check it out and feel comfortable about it before sharing it.. so I did put effort into it.
posted
I completed it, and sent off to others in my lyme group here. Hope it offers some answers down the line that will help us as a whole, or at least will cast a light on what the majority of patients go through.
Thanks TC for doing some investigating!
JavaBeing
Posts: 208 | From Portland, OR USA | Registered: Oct 2004
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I also spoke to the person doing this survey. It is for a graduate course. She is just looking for a few specific statistics, so don't be discouraged if you don't meet the criteria or she didn't cover every possibility.
A comprehensive survey would just be too complicated for what she is looking for.
Take care, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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