Wednesday, January 23, 2013

Victoria Lyme Awareness and Support Group MEETING: Sunday, January 27th, 6 to 8 pm



Four Mile Bar & Grill - Tea Room, 199 Island Highway ,Victoria , BC  250-479-2514
Ask for the TEA room, which is reserved under "Victoria Lyme". If you are having dinner, be prepared to order right away. Remember we are welcome regardless of whether we order food. You can find the menu at http://www.fourmilehouse.com/restaurant_menu.html. Note there are gluten free options.
DRAFT Agenda 
Note that some items may be carried forward to the next meeting to ensure that we have time to express and address concerns and questions at the end of the meeting.
*Please let us know if you would like us to add to this agenda by emailing us at victorialyme@gmail.com

INTRODUCTIONS. Welcome message.  
First time attendees may use this time to have any issues and concerns addressed before moving on through agenda.

UPDATES 

1. Complex Chronic Disease Center in Vancouver – (Dave) The CCDC's phone number is 604-875-2000  ext 4892 (you will need a referral from an MD).   Irene is the Medical Director Assistant to Alison Bested MD.  The Centre will call us when they are ready to see patients.

2.  Lyme Support Library  - our group's library can give you the chance to read a book and decide if you would like to purchase for your own personal use, or save your money. Are there any books that anyone would like to see in the library? Do you have a book or DVD to donate?  $10 to join the library, one book out at a time, to be returned at next meeting.  Our library books/dvds:
  • The Top 10 Lyme Disease Treatments
  • Treatment of Chronic Lyme Disease 
  • It's All in Your Head - Around the World in 80 Lyme Patient Stories
  • Beyond Lyme Disease
  • Under our Skin (DVD)
3.  Movie Night - Our movie night in December (Under Our Skin) was fun and educational - thanks to everyone who came and brought their friends.  Another movie night is planned for 7 pm, Saturday, February 16th.
Invisibly Ill: Part One - "A Stealth Reality" from Beyond the Bandaid.  See http://beyondthebandaid.com.au/  Details will be emailed to everyone.

4.  WHO Petition - Please reminder to sign the World Health Organization petition as they still need more signatures: Take action on Tick-Borne Diseases!    
DISCUSSION

5.  Worldwide Lyme Protest  https://www.facebook.com/worldwidelymeprotest.  Canada's facebook page:   https://www.facebook.com/WorldwideLymeProtestCanada  There will be events all across Canada in May 2013 (date not set yet).  Discuss ideas for our involvement.

INFORMATION

6.  Chronic Tracker: Lyme   New online symptom tracker - try it out for a month for free and if you like it you can subscribe for $3 a month.   They send you a reminder each day by email.  You rate your symptoms daily by a simple click and update information about your protocol, tests, etc as needed.  Results are automatically graphed and data is always backed up.  See  http://lyme.chronic-tracker.com/

7. Recent studies and articles:

a)  "Characterization and evolution of dermal filaments from patients with Morgellons disease" by Middelveen MJ, Mayne PJ, Kahn DG, Stricker RB  http://www.dovepress.com/characterization-and-evolution-of-dermal-filaments-from-patients-with--peer-reviewed-article-CCID
b) "Issues in the Diagnosis and Treatment of Lyme Disease" by Donta, Sam  T.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3520031/
c)  "Tiny Tick Big Threat:  Babesiosis in the Blood Supply" by Mary Beth Pfeiffer, Poughkeepsie Journal, Poughkeepsie, New York http://www.poughkeepsiejournal.com/article/20121223/NEWS01/312230043/TINY-TICK-BIG-THREAT-Dutchess-leads-state-babesiosis-another-threat-besides-Lyme-disease-you-re-bitten-by-deer-tick

INFORMAL DISCUSSION (information sharing, support, orientation for newcomers, questions, ideas for upcoming meetings)

NEXT MEETING will be on February 24th, 2013.
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