LymeNet Flash: Att: Keebler, Gigi, and others: Need help with a study of Lyme & Lymenet

LymeNet on Facebook

LymeNet on Twitter

Follow @LymeDiseaseNet

The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive

The Lyme Disease Network is a non-profit organization funded by individual donations.

Topic Closed

This topic has been moved to Activism.

»	LymeNet Flash » Questions and Discussion » Medical Questions » Att: Keebler, Gigi, and others: Need help with a study of Lyme & Lymenet

Author

Topic: Att: Keebler, Gigi, and others: Need help with a study of Lyme & Lymenet

psr1
LymeNet Contributor
Member # 22957

posted

Hi Lymenet members:

I am a Lyme sufferer who was active on Lymenet for about two

years: after that, my treatment was pretty successful (I am doing

homeopaathy) and I am

now in a PhD program at Rutgers in Information &

Communication. I am focusing primarily on libraries (I am a

researcher & librarian) but have a very strong secondary focus on

alternative health communities. I've written a couple of papers on

Lymenet and the critically important role patient-run online

communities play as opponents of, and alternatives to,

mainstream medicine. I am now beginning to work on a paper

for publication. I was hoping that you might be able to give me

some time: I know you that you are all working tirelessly to

understand the ways in which this complex of diseases damages

the body, and that you understand that we are all of us in a life-

or-death struggle, with alternative communities like Lymenet

one essential piece of the puzzle.

I have a bunch of questions I was hoping you would answer for

me, about the self-assumed role of 'greeter' or 'guide' that some

members of Lymenet (like you) take on, to address the concerns

of newcomers and give them a sense of some of the possibilities

available to them for alternative treatments. If you're willing, I

will send them to you: if you have additional questions, please

ask.

I posted this in activism as well

Thanks for your time -
Pam Read
[email protected]

Posts: 360 | From New York | Registered: Oct 2009 | IP: Logged |

Keebler
Honored Contributor (25K+ posts)
Member # 12673

posted

-
Pam,

Thanks for your work on this matter. Due to energy constraints I don't use my PM function here.

However, I sent you an email ("Keebler" is in the subject line so you can know it's safe to open).

I forgot to mention this in the email but, if you reply, please do not double space. It's very hard to read double spacing -- just as hard to read solid blocks of text.

Short paragraphs work best with a line of white space every 3-4 lines at the max. Otherwise, my eyes just can't read it without extreme pain and vertigo - and it takes a long time to sort it all out.
-

Posts: 48021 | From Tree House | Registered: Jul 2007 | IP: Logged |

Keebler
Honored Contributor (25K+ posts)
Member # 12673

posted

-
You might also want to look at BettyG's stellar advocay efforts at MDJunction, the lyme section.

My eyes cannot bear to read that site for even a few seconds (it's so busy and distracting) but I know she works very hard to help others there.

http://www.mdjunction.com/lyme-disease

MDJunction - Lyme
-

Posts: 48021 | From Tree House | Registered: Jul 2007 | IP: Logged |

Keebler
Honored Contributor (25K+ posts)
Member # 12673

posted

-
To be sure you have all of these . . . .

Here are some top lyme advocacy organizations. Some are set up to welcome volunteers in various ways.

Each has some differences or focus, but they are all fully "lyme literate" and ILADS "minded" -- bringing them all together.

ILADS - www.ilads.org

Lyme Disease ASSOCIATION - http://www.lymediseaseassociation.org

Tick-Borne Disease Alliance - http://tbdalliance.org

Lyme Research Alliance - http://www.lymeresearchalliance.org/

Treat The Bite - http://www.TreatTheBite.com

Lyme Disease.org - http://www.lymedisease.org

The state discussion groups through this last link:

http://www.lymedisease.org/resources/support.html

- Not an exclusive or formal list. Just the top organizations that came to mind. Remember STATE and LOCAL lyme support groups, too.
-

Posts: 48021 | From Tree House | Registered: Jul 2007 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

Moving to Activism .. again

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

Topic Closed

Printer-friendly view of this topic

The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA
http://www.lymenet.org/