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 » Mon 8 Sep 2014 3:26

Cute - ChronicLyme19! ;)

I made some possible logos. I am trying to publish them so you can all see them and pick one, or change it, or come up with something completely different.

OK. Here they are! Tell me what you think:

https://docs.google.com/document/d/1dsV ... sp=sharing
Last edited by velvetmagnetta on Tue 23 Sep 2014 18:37, edited 1 time in total.

Camp Other
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by Camp Other » Mon 8 Sep 2014 18:54

This is all fun, that you're working on acronyms for the project and logos.

I'm stepping in for a moment to ask, though, if anyone thinks there are questions which have yet to be asked of patients which haven't been?

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ChronicLyme19
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by ChronicLyme19 » Tue 9 Sep 2014 2:56

Camp Other/everyone, take a look at the following sections. They're in a good format at this point and ready for new/missing questions:

Diagnostics:
https://docs.google.com/document/d/1d_u ... X_P1c/edit

Demographics:
https://docs.google.com/document/d/17bV ... XpGY/edit#

Miscellaneous:
https://docs.google.com/document/d/1txy ... CW4c/edit#

Sociological views:
https://docs.google.com/document/d/1NfT ... Ha6mc/edit

Symptoms and treatment sections I'm still in the process of cleaning up. It'll be easier to see where the question gaps are when the format is cleaner.
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 » Tue 9 Sep 2014 14:52

We've done a lot, but we still have a long way to go. I am trying to go through all our posts on his thread to add in any questions we missed.

Then, I would like to work with ChronicLyme19 on the treatments section. We have been concentrating rather heavily on the Diagnostics section - but I think that has been the most daunting task to put all those different kinds of questions together into a coherent flow.

The Diagnostics section still needs more tweaking and editing, but I hope we can start the 2 major treatment categories next. They are divided up into "Conventional" and "Alternative" - but those labels are only for our convenience, and I hope we can rename each subject within those sections appropriately.

"Conventional" mostly consists of the various antibiotics treatments people have tried including pulsed antibiotic approaches.

If anyone has any antibiotic regimens they would like to add, please do. I can only say what I've tried - it's a lot, but not nearly as much as some of you.

Within the treatments, we must include the various treatments for as many coinfections as we can think of and both the conventional antibiotics taken for them as well as any herbal, etc. supplements.

---------
Camp Other:

Do we have all the most common co-morbitities? FM, CFS/ME, MS, RA, others?
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A lot of people talk about the herx pain cycle - should we include some cyclic questions? These may give a clue as to how the hormones may affect this cycle.

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I put a section for all the various diets we all may have tried - I had some diets to add and I put them under to the ones that were already there. I hope that's OK with whoever wrote those diet questions?

Please add any special diets we may have missed. It would be interesting to see if any one particular diet has really helped people. Does a gluten-free diet really make most people who try it feel any better than those who eat gluten-rich foods?

--------

OK. That's all my thoughts so far. I'm going question-hunting now! We've not done too shabby - all us sick people. This effort takes a world village of Lymies!

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Last edited by velvetmagnetta on Thu 11 Sep 2014 7:31, edited 1 time in total.

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Wed 10 Sep 2014 4:51

All the links to the different subsections of the survey can be found here:

PPLS Index
https://docs.google.com/document/d/11Qc ... sp=sharing

No one told me if the other index link I posted worked or not, so I'm trying again. I hope somebody will tell me if this link works - also if the links inside the Index document work as well.

If you click the "comments" button in the top right-hand corner of each document, you can read through all the questions, answers, comments, and arguments we've had about the various questions and question formats.

A lot of painstaking work is going into these questions to make them as clear and concise as possible while still keeping them descriptive and as thorough and all-encompassing as we can.

If you would like to help edit, please send me an email address (please make a new anonymous Google Gmail email - it's really easy) so I can send you the "invite" email so you can edit all the documents directly.

You can create a new anonymous email address here:
https://www.gmail.com/intl/en/mail/help/about.html

***Note: If you want to create an anonymous Gmail email address, DO NOT sign up using your real name because that's the name that will be displayed when you go to edit a document.***

Also, everyone is welcome to view and comment on any and all documents. Please do! The more help we can get with this, the better. If you do comment anonymously, please sign your comment with your Lymenet Europe screen name.

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Sun 14 Sep 2014 0:27

I'm working on getting a list together of all the races/ethnicities of the world. The ones I have so far are:

African-American or Black
Afro-European
American Indian or Alaskan Native
Asian
Caucasian or White
Hispanic or Latino
Jewish
Native Hawaiian or other Pacific Islander
Other

And, or course, the respondent can check off more that one. This information is important for 2 reasons:

1. There may be genetic differences in the way people respond to the Lyme infection
2. There may be differences in standards of care for certain ethinicities within a country

I'm still trying to list all the states/provinces/regions and countries in the world. But I'm also trying to get all the possible races and ethnicities down as well. If you can think of any I missed, please post them here or on the "Demographics" page.

Doesn't Russia and the surrounding area have different races/ethnicities?

What about the Middle East? Are they considered Afro-European? Is "Arab" a race? How about "Serb"?

And I'm pretty sure we don't have to name all of them:

http://www.infoplease.com/ipa/A0855617.html

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Mon 15 Sep 2014 1:00

I listed a whole bunch more alternative treatments in the "Treatments Alternative" document. Let me know if I missed any!

RitaA
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by RitaA » Tue 16 Sep 2014 1:16

velvetmagnetta,

I was getting pretty off-topic in another thread when it comes to thyroid and other endocrine (e.g. HPA-axis) testing. After giving this a bit more thought today, it might make sense to include "Endocrine Function" in the "Diagnostics" portion of the Lyme disease survey (possibly after "Immunology"). That said, other than some very standard thyroid tests that I already mentioned in the other thread, I'm really not sure what (if anything) else should be added.

Not everyone (yourself included) has had thyroid and/or other endocrine testing done, so the entire section may not apply to some people completing the survey, just as the Immunology portion of the Diagnostics section may not apply to others. That doesn't mean that endocrine and/or immune dysfunction can be entirely ruled out in these folks. In some cases, all it really means is that some doctors may not be as thorough as others when it comes to investigating possible causes for their patient's continuing signs and symptoms.

Also, In the case of autoimmune thyroid disorder (e.g. Hashimoto's thyroiditis or Graves disease), that might actually qualify under both endocrine and immune dysfunction, and this is where it gets complicated (at least for me).

p.s. I started looking at your race/ethnicity questions and ended up with scrambled brains. I was fairly certain that Jewish is a religion as opposed to a race/ethnicity, but found contradictory information on the internet. Since there are Jewish people in various parts of the world, I still consider it primarily a religion.

As far as Arabs:

http://www.adc.org/education/facts-abou ... rab-world/
"Arab" is a cultural and linguistic term. It refers to those who speak Arabic as their first language. Arabs are united by culture and by history. Arabs are not a race. Some have blue eyes and red hair; others are dark skinned; many are somewhere in between. Most Arabs are Muslims but there are also millions of Christian Arabs and thousands of Jewish Arabs, just as there are Muslim, Christian, and Jewish Americans.

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ChronicLyme19
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by ChronicLyme19 » Tue 16 Sep 2014 4:44

Jewish can also be an ethnicity.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

RitaA
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by RitaA » Tue 16 Sep 2014 5:30

ChronicLyme19 wrote:Jewish can also be an ethnicity.
Yes and no -- as you'll see from the following.

http://www.jewfaq.org/judaism.htm
[snip]

Is It a Culture or Ethnic Group?

Most secular American Jews think of their Jewishness as a matter of culture or ethnicity. When they think of Jewish culture, they think of the food, of the Yiddish language, of some limited holiday observances, and of cultural values like the emphasis on education.

Those secular American Jews would probably be surprised to learn that much of what they think of as Jewish culture is really just Ashkenazic Jewish culture, the culture of Jews whose ancestors come from one part of the world. Jews have lived in many parts of the world and have developed many different traditions. As a Sephardic friend likes to remind me, Yiddish is not part of his culture, nor are bagels and lox, chopped liver, latkes, gefilte fish or matzah ball soup. His idea of Jewish cooking includes bourekas, phyllo dough pastries filled with cheese or spinach. His ancestors probably wouldn't know what to do with a dreidel.

There are certainly cultural traits and behaviors that are shared by many Jews, that make us feel more comfortable with other Jews. Jews in many parts of the world share many of those cultural aspects. However, that culture is not shared by all Jews all over the world, and people who do not share that culture are no less Jews because of it. Thus, Judaism must be something more than a culture or an ethnic group.
https://answers.yahoo.com/question/inde ... 051AANEwK2
Question:

Why are Jews an ethnic group and not simply a religious faith?

When I think Jewish I normally think about a religion, but of course in actuality they are an ethnicity. Why is this the case? For instance, Catholics and Mormons aren't ethnicities. Just never really understood this.

One Answer:

We literally keep telling people this (at least 10 times a day), but just get ignored. Everyone else seems to want to define what Judaism is, instead of allowing people who are actually Jewish to define themselves and explain.

Judaism IS a religion and it definitely isn't a race like some have suggested. There are Jews of ALL races the world over.

Judaism HAS distinct ethnic groups in itself, but that does not make the entire group an ethnicity. Ashkenazic (German or Eastern European), Sephardic (Spain and Portugal), Mizrahim (Middle Eastern, North African) and smaller subgroups exist.

These include: Indian Jews (Bene Israel), Romaniotes (Greece), Italian and Chinese Jews. The customs are different, so are the base languages as a whole etc..

[snip]
There’s a lot of debate/discussion found in the link above, but my brother-in-law (who just happens to be Jewish), gave me a very similar answer to the one above.

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