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 » Tue 26 Aug 2014 14:18

CL19 - Stellar job!

I added some comments/questions and moved some stuff around (just a little tiny bit). I also tried to answer any questions you left, but I don't know most of the answers, so we'll either have to wait for someone who knows better or make the decisions on our own.

Remember - there's no rush. We still haven't heard from several people, we we can wait.

dif is really helping with his extensive knowledge of lab tests and genotypes and such. Thank you so much, dif!

Remember - anyone can leave a comment - no email required. You'll come up as "anonymous" - but you can give yourself a name or label so we can refer to you.

And it's always a relief to have Duncan there - we need his uncommon common common sense - and sense of humor!

Yoo-hoo! Camp Other? You would love this! At least leave us some comments as "anonymous CO" or something to give us your learned opinion, please?

LHCTom - I know all the forms are confusing at first, but give it a shot. Read them over and add in some comments. You have a unique perspective that we could all really benefit from. I'll re-post all the links together.

Everybody's really stepping up. But as Duncan reminds us - there is no rush - so come join the editing process whenever you're feeling better. I'm really enjoying this, but I do get really sick still at times and a great confusion comes along with it.

I am not yet finished going through all the posts to grab questions we may have missed. I am on page 13 and painstakingly combing through them. I may include some repeats - sorry for that. Just edit them out.

OK. Cool. See you there!

Camp Other
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by Camp Other » Thu 28 Aug 2014 5:07

velvetmagnetta wrote:CL19 - Stellar job!
Agreed!
velvetmagnetta wrote: I added some comments/questions and moved some stuff around (just a little tiny bit). I also tried to answer any questions you left, but I don't know most of the answers, so we'll either have to wait for someone who knows better or make the decisions on our own.
I did look in at the document. I just haven't added/edited anything yet. If I don't get to it right away and people can't wait, feel free to copy my stuff and merge it into the rest. I can then go back and double-check it.
velvetmagnetta wrote: Remember - there's no rush. We still haven't heard from several people, we we can wait.

dif is really helping with his extensive knowledge of lab tests and genotypes and such. Thank you so much, dif!

Remember - anyone can leave a comment - no email required. You'll come up as "anonymous" - but you can give yourself a name or label so we can refer to you.

And it's always a relief to have Duncan there - we need his uncommon common common sense - and sense of humor!

Yoo-hoo! Camp Other? You would love this! At least leave us some comments as "anonymous CO" or something to give us your learned opinion, please?
Hey, there's no rush, right? :)

I was planning on adding additional questions here, then seeing what people thought before merging them into the document.

In other words: I'm not in a rush. And I've been battling fatigue and dealing with other stuff lately, so I've been kinda quiet online except for a few exchanges with a few people on Twitter.
velvetmagnetta wrote: Everybody's really stepping up. But as Duncan reminds us - there is no rush - so come join the editing process whenever you're feeling better. I'm really enjoying this, but I do get really sick still at times and a great confusion comes along with it.

I am not yet finished going through all the posts to grab questions we may have missed. I am on page 13 and painstakingly combing through them. I may include some repeats - sorry for that. Just edit them out.

OK. Cool. See you there!
All in good time. All in good time. Everyone takes it at the pace they can manage, when they can manage.

As I've said for some time, dealing with Lyme disease is a marathon not a race - so pace yourself! :idea:

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Thu 28 Aug 2014 13:02

Good advice Camp Other - Pace Yourself.

Right after writing all that excited stuff, I got really really ill and for several days.

I'm coming back now, but sloooowly.

I swear, I cannot find a rhyme or reason for when it happens!

duncan
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by duncan » Thu 28 Aug 2014 13:53

Pacing vs. exertion is an essential component of strategies for chronic illnesses in general, and imo persistent Lyme is no different. I've gotten pretty good at managing the physical side of that. I have refined it down to minutes. My regimen even permits some mild exercise; most physicians, IDSA and ILADS alike, recommend this. I guess aside from preventing de-conditioning, the spirochetes apparently aren't fond of oxygen, if I understand some of the exercise logic correctly.

What I have trouble with, and what isn't on many clinicians' or even researchers' radar, is cognitive exertion. Intellectual, emotional - any kind of sustained mental exercise or focused concentration - can elicit in me a crash. This really isn't written about too much, at least not that I am aware of, although I've seen things in ME/CFS archives.

For me, at least, and maybe for others here, that concentration factor may be a trigger. And I haven't figured out yet when I've done too much. It's difficult to quantify. Accordingly, I try to err on the side of caution. Except, it's easy to get caught up in the moment, or in a gust of energy and creativity that you just have to convert to copy. But then, usually within 24 hours, things go South for me.

I suspect others can tell a similar tale.

So. Just saying...

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Thu 28 Aug 2014 17:23

And I'm listening.

I don't think my mental exertion on the Lyme questionnaire is what triggered this last bout, but it is possible. But it doesn't matter because as soon as I am able, I will be jumping right back in!

I honestly cannot figure out what made me crash this last time, but the crashes used to happen much more frequently. And mental, physical, or emotional stress sometimes would cause one of those crazy cascades.

I did have to slow down on my Jasmine intake because I was waiting for more - I didn't want to run out before the next bottle arrived - but I don't think that's what it was either.

I used to be on the down all the time with no ups at all! So I'm just really glad to be able to do anything. When I get like that (down) I can't do anything! I can't use the computer or check email or even move.

I hate it!!!

And that's what I hate most about that "sickness behavior" theory - oh, you've been so ill for so long that your body is just used to thinking it's ill, so it makes you feel ill - even when you're not.

BULL.

The moment I get just the smallest chance to do anything...I'm on it. I'm so grateful to not be feeling like complete and utter crap that I just go for it. As I think many of you do here when given the chance.

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LHCTom
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by LHCTom » Thu 28 Aug 2014 18:58

LHCTom - I know all the forms are confusing at first, but give it a shot. Read them over and add in some comments. You have a unique perspective that we could all really benefit from. I'll re-post all the links together.
Its not that the forms are confusing. I understand its and evolving and learning process. But when I look at each document, the way the questions are ordered and formatted differs from the evolution and the questions vary quite a bit in their target application. So when I'm thinking of editing I find it difficult not understanding some common organization, formatting, ordering, goals, applications etc.. I'm just accustomed to these things being somewhat defined so I don't go in like a bull in a china shop and alter others views of these things.

Let me give some examples rather than generalizations that might not be clear.

Don't take offense because I know everyone is trying and this kind of thing is probably new and its very good for strangers on a forum without much upfront definition. I'll try ad list some of the things that make it more difficult for me. I have a background in engineering and computer engineering and in that world its critical to be very orderly or things fall apart. I know this is not the same but that's the world I came from so I have 25 years of "be careful and don't screw up others work without their agreement"

Let me give some examples that block me from just jumping in for fear of messing up others way of seeing some of the things 'll mention. It would help to keep a section at the front of the document that defines some agreements on some of these things and let that evolve. The comments are good but they tend to be more specific issues and not global. I find it difficult to just add questions without my own sense of the global goal/format etc.. That just me.

I tend to think breaking it into multiple documents seemed good at the time but the categories are not as crisp as we would like so I find myself wondering which document and cannot see what's in others without switching documents. Its not all that large and maybe one document with very clear header and page boundaries would make it easier to know where to add something or move something that belongs elsewhere or even add a new category or sub-category. I keep seeing examples of this and back off waiting.

There are some questions like which species which has a lot of implications for what one asks and how. If you are in the US, and are not in a research program, there are no truly reliable tests that would tell you what species you have. I'm not sure how its handled in Europe where there are actual garinii and afzellii antigens so you might have been told. I think its actually difficult to get a non-burdorferi test in the US. So if someone in the US says they know what species, it peaks my interest in how they know as opposed to trusting their answer in many cases. A tiny percentage might have been in a research program and then I'm more curious about the program and how they knew. For the others, it almost becomes a sociological answer because of the weird paths to thinking you know and what they are and why. Or may be you are one of the few people who got tested by the Milford Lab PCR and found it was miyamotoi or they told you the species. Or like me and got the ALS culture with the pyrG gene and looked it up in NCBI. So my point is that its not a simple question where the answer is trusted data. The answer suggests a whole line of questioning that might result in some tiny US percentage really knowing or a larger group who is in Europe or Asia that took a reliable test or a much larger group in the US who took some odd test or just has beliefs. There are a handful of questions with this kind of ever expansive questioning to get to the bottom of how they came to believe what species. And those are very interesting. Sometimes they cross category boundaries.

Plus from an ordering point of view that question needs to be moved to the end and not start the diagnostic section. I don't feel comfortable just moving it and adding/rearranging it to add the questions I mentioned above.

The Diagnostic section could be Diagnosis since that is the broader concept I believe is intended. Plus is it only the Lyme diagnosis or all the diagnosis efforts attempted and wrong diagnosis or alternate possible diagnosis and all the test results of all kinds that led to the diagnosis or confirmed it or were done. So would all the blood tests done be there even if they were normal and or dead ends? I would think the section is everything that was done or occurred before the diagnosis or multiple diagnosis up to it and after it so interesting blood test results and processes can be compared. I would think that's what it should be. Maybe right after the header, whether it be a document or a section of one document could have a clear description of what the intent of the category is and even things like goals.

The newest numbering used in the Diagnostic section is the most straightforward so far. I can't help but wonder if no numbering with sub-headers would make it clearer and prevent the problem of making sure the numbering stays correct without gaps.

There are examples like "Have you ever been diagnosed with Lyme Disease" that would be clearer and simpler if it was reduced to "How were you diagnosed with Lyme Disease?" since we are assuming someone who hadn't would not be filling out a Lyme questionnaire. Then just list all the possibilities and allow choosing all that apply. It could even include for the case where they weren't or were self diagnosed. It could even have say multiple answers for 1)all that apply 2) The one's I trust (3 my first 4) the most thorough etc... so with the one question we can learn the maximum without the conditional. I see where that can be done in other places but don't want to mess up how someone else sees it. In general, many of these conditionals can be flattened by asking the question another way and can either be multiple choice or select all that apply and add multiple answer sets to learn more from one question.

I've seen other thing that I don't know how to handle but I leave it at that. 'm not sure if this kind of thing effects others. Maybe its just me and how I've done things in the past like this and be polite and not mess with others work unless its agreed.

I'm not trying to criticize since I know its an evolving thin and everyone is trying. I just wanted to throw some things out that create a problem for me blocking my jumping in now and maybe nobody else is concerned and just wants to throw in all the questions and clean it up later. There is no doubt it will need to be cleaned up later but I just struggle with minimizing that now and not messing up others views of how they see it. Maybe some of the things I've mentioned could be considered and described in the first document and that can evolve also as difficulties arise.

Hope that made sense...
The greater the ignorance, the greater the dogmatism.

Attributed to William Osler, 1902

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ChronicLyme19
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by ChronicLyme19 » Thu 28 Aug 2014 19:46

It would help to keep a section at the front of the document that defines some agreements on some of these things and let that evolve. The comments are good but they tend to be more specific issues and not global. I find it difficult to just add questions without my own sense of the global goal/format etc.. That just me.
Yeh, I agree on that front. It might be nice to at the beginning of each category doc, put a list of an overall flow. I wa about to do that with the diagnostics section that I had cleaned up. I found certain questions grouped together very well and it made sense to ask them in a certain order....like ask about tick bites first and then rashes and then about testing. But I also notices other clusters of questions, like diagnostic Qs about neurological issues and immune issues, so I tried to put those together as well. Then you also have those "if yes" then...follow on Qs. Hence why I tried to have them tabbed in under the same area to keep them grouped together.

I think when we get the Qs we have now, in a clean format and grouped a little bit, it'll be easier to see where to add in the new ones.
o if someone in the US says they know what species, it peaks my interest in how they know as opposed to trusting their answer in many cases.
I think what is is the Mildford Hospital in the northeast is now doing DNA testing. They might be able to, but when I read through their research paper they published the sensitivity of their test was better than the current DNA testing, but still much lower than an ideal test sensitivity would be.
Maybe right after the header, whether it be a document or a section of one document could have a clear description of what the intent of the category is and even things like goals.
Yeh, or even just a list of the types of questions so people know where to look to add new ones.
Have you ever been diagnosed with Lyme Disease
This I would leave alone for a few reasons. One, the person might not have access to doctors who are knowledgeable about Lyme and may in fact have it. Two, other like Henry had wanted to be able to sort out the populations that had never been officially diagnosed. I agree most people taking the survey would have Lyme or otherwise wouldn't be taking it, but I still feel for it to be more rigorous we shouldn't assume the answer.
In general, many of these conditionals can be flattened by asking the question another way and can either be multiple choice or select all that apply and add multiple answer sets to learn more from one question.
Agreed. I tried to do that on some already to simplify it for the answering purposes. I was more focused on getting the format cleaned up and questions grouped before trying to tackle how to ask. I was more focused on what to ask first, and then looking at the how.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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ChronicLyme19
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by ChronicLyme19 » Thu 28 Aug 2014 19:54

I forgot to add, Camp Other and Duncan, I do agree with you guys. This is a huge undertaking and everyone will need to pace yourself or else we're going to get burned out. I'm going to be in and out because my town is starting a new Lyme community group and they need a lot of help getting organized.

The plan of attack I have for the survey is:
1) Split questions into the categories/define major categories (vm is doing a great job at that) - check
2) Go through and clean up the format - started doing that
3) Start reordering and grouping related questions within each doc/main category
4) Make a short list or description at the beginning of the doc like LHCTom said to help guide how to add in new stuff and define what will go where/order
5) Add in new questions
6) Examine the "how" to ask the question and word choice/asnwer format
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 » Thu 28 Aug 2014 22:55

Thank you LHCTom for your insights into the overall flow of the questionnaire.

This numbering thing is just temporary and we are going to need someone with an eye for the overall flow of the questionnaire. Your unique perspective, coming from the computer programming background as you do, will give this survey an impeccable logic to it.

I realize you wanted to do this from the beginning - and I supposed you can if you just copy all the questions we have edited so far into another document with yourself as "Owner" - or you can wait until we at least have all the questions in and the repeats deleted.

Your fabulous idea to ask questions in such a way as to get the maximum amount of information from each question is needed greatly. But we are not there quite yet. We can only work on it when we can and we are not actually finished assimilating every question already asked on this forum.

Believe it or not, we need more questions - especially for the Treatments-Conventional and Treatments-Alternative sections.

And we need the ones we have already edited to be re-edited to be asked in a succinct and logical manor.

The only formatting we are doing right now is to try to keep each question numbered and any related questions sub-numbered...and so on and on.

This way, when you go in to format with Header 1, etc. you will know where to put all the formatting - I hope we can deliver you a these documents as clean as possible for you to format as you see fit.

If anything messes up - I always make copies of all documents every day - and you can always revert back to the last revision.

LHCTom, you are 3 steps ahead of us. And this foresight is greatly appreciated and desperately needed. But you must allow us to work on each section separately because of our many and varied cognitive insufficiencies. Myself, I cannot fathom a long document at this time. I believe others also have this problem. You may not have this problem at all. But many of us do.

Please be patient until we can offer up a more comprehensive documents for you to meld together.

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Thu 28 Aug 2014 23:06

Oh, LHCTom,

You can always create a "Description" document inside or separately from any of the Category documents.

I hope I am explaining this right, but your idea that CL19 seconded, to give a "flow description" at the beginning of each document category is a great one. I'm just putting out there another option that you may write the "flow description" at the beginning inside each doc - or - you can create a separate doc, like "PPLS Diagnostics Flow".

And we will all know that "PPLS Diagnostics Flow" describes the flow desired for for the section "Diagnostics".

So, basically, I am agreeing with LHCTom and CL19 to give us some direction inside or alongside each document.

huh? I really hope this made any sense! If it does, it would be a great idea! I swear!

:shock:

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