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].
Thanks so much!
Alison Schwarzwalder
Posted by kelmo (Member # 8797) on :
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.
Posted by cantgiveupyet (Member # 8165) on :
I completed it
Posted by cbb (Member # 788) on :
Finished the survey. I hope she'll let us know what she learns from the responses.
Posted by bettyg (Member # 6147) on :
i completed this 43 Q/A in 45 minus.
disappointed she didn't show anything for lyme sxs prior to 1980.
Posted by Tincup (Member # 5829) on :
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.
Posted by treepatrol (Member # 4117) on :
Done pretty good one!!!
Posted by lou4656 (Member # 10300) on :
Did the survey. Hope others do also.
Posted by bettyg (Member # 6147) on :
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!! Posted by sometimesdilly (Member # 9982) on :
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
Posted by sizzled (Member # 1357) on :
Done!
Posted by livinlyme (Member # 3773) on :
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
Posted by helen65 (Member # 2962) on :
Took the survey.
Posted by perplexed (Member # 1913) on :
did the survey yesterday. Got the info from lymeblog.com
Very interesting. Anxious to see the results.
hugs, perplexed Posted by Tincup (Member # 5829) on :
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 by ESG (Member # 4816) on :
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
Posted by bettyg (Member # 6147) on :
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! Posted by Robin123 (Member # 9197) on :
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.
Posted by Tincup (Member # 5829) on :
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 by JavaBeing (Member # 6321) on :
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
Posted by shazdancer (Member # 1436) on :
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.
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