Patient-Formulated Lyme Disease Survey Draft

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Fri 5 Sep 2014 2:39

Laughing Out Loud - I had to spell out the whole thing, Duncan!

People will ask, "Hey, have you got the CLAP yet?"

Oh, and I really like "The Lyme Project". I don't know why, but I really really do.

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ChronicLyme19
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Location: NY, USA

Re: Patient-Formulated Lyme Disease Survey Draft

Post by ChronicLyme19 » Fri 5 Sep 2014 3:57

You could even make a cool logo for it like this:

THE Lyme Project
a
t
i
e
n
t

You get the idea, but much nicer looking. Or just do the project patient part in a lime, lol.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Fri 5 Sep 2014 15:58

I fear that the name "The Lyme Project" may be too generic. If people look up "The Lyme Project" on Google, they will get a number of other sites and our WordPress site (or wherever we place the survey) will be lost among them.

Has anyone played that game "Portal"? I have just started to play it just recently - and I absolutely love it - I recommend this one, especially on days you're feeling really bad.

The predecessor to "Portal" was called "Narbacular Drop":
(From Wikipedia)

The word Narbacular, which does not exist in any dictionary, was chosen primarily to aid in internet search engine results.
So, we might want to think about this, too. Although, I must point out that it is the game simply and elegently named "Portal" that everyone knows about!

duncan
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by duncan » Fri 5 Sep 2014 16:23

Yes, it may be too generic. There is also something to be said that "Lyme" in the title may be misleading. Should it be Borrelia? Tick-borne Diseases?

phyfe
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by phyfe » Sat 6 Sep 2014 22:33

How about "The Vector Borne Disease Project"?

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Sun 7 Sep 2014 3:41

That's good - but "vector-borne" includes many more diseases than just Lyme and its co-infections. I think a vector is pretty much any living creature that can pass along a disease.

We would have to specify that we are covering "tick-borne" diseases with ticks as the vector.

We have to draw the line somewhere - otherwise it will be too general. We are not talking about malaria here which is a vector-borne disease with mosquitoes as its vector.

We have some questions about relapsing fever diseases, but I would prefer to emphasize the spirochete Bb and, to a lesser degree, its co-infections - but that's my opinion. I really want to find out most what patients have experienced when it comes to the Bb spirochetal infection and the aftermath.

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ChronicLyme19
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by ChronicLyme19 » Sun 7 Sep 2014 17:21

Welcome back phyfe :)

How about The Tick Borne Disease Project then?
Half of what you are taught is incorrect, but which half? What if there's another half missing?

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Sun 7 Sep 2014 19:23

I've got one -

International Patient-centered Lyme and Associated Diseases Evaluation - or iPLADE.

This one may be to close to ILADS, but maybe ILADS will help us distribute the questionnaire and even (hopefully) put it up on their website, so maybe they won't mind?

The name iPlade does include the fact that it is an international effort, that it is geared towards patients and their experiences, and it emphasizes Lyme but includes other diseases without having to mention every single one, and it calls this effort an "evaluation" which can include a questionnaire, a project, and a survey.

We can say, "iPLADE, have you?"

(Yes, I have NO LIFE so this is what I think about all day!)

The "i" can have a question mark as its dot. The letters can be all in white - except for the "L" which can be in lime green.

I'll try to make one to show you.

duncan
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by duncan » Sun 7 Sep 2014 19:29

I like it!

Not sure if ILADS folk would approve, though. Not sure they have a right over this, either. I love the lower case i - which also helps differentiate it.

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ChronicLyme19
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by ChronicLyme19 » Sun 7 Sep 2014 19:33

iLIKE

:)

Sounds good to me, what does everyone else think? I really like the L being lime green and the others being a different color.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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