Friday, November 16, 2012

Victoria Lyme Awareness and Support Group Sunday, Nov. 25, 6 to 8 pm, Four Mile Bar & Grill - Tea Room, 199 Island Highway ,Victoria , BC

A reminder of the upcoming meeting of the Victoria Lyme Awareness and Support Group Sunday, Nov. 25, 6 to 8 pm. See below for the agenda and lots of useful information. 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.
Location: 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 Note there are gluten free options.

Victoria Lyme Support Group DRAFT Agenda for Nov. 25, 2012*Please let us know if you would like us to add to this agenda by emailing us at

INTRODUCTIONS. Welcome message. (20 min) 
First time attendees may use this time to have any issues and concerns addressed before moving on through agenda.

UPDATES (10 min)
1. Complex Chronic Disease Center – CCDC (Dave) Referred to as the Lyme Clinic on previous agendas.  Dave recently travelled to the future site of the CCDC using buses and the Skytrain.  He reports that the three staff members there have been hearing about this clinic for some time and a Medical Director Assistant has been hired - Irene. The directions as posted on hospital site worked well, out the Sky train station front door, right (5 minutes walk) and left onto Heather Street (7 minute walk).  Neighbourhood was well maintained, safe & flat, with wide sidewalks & good visibility   Cafeteria offers a good selection.
Here is the link to maps and directions to #77 at the Women's Clinic in the BC Women's Hospital where the CCDC will be located:  Also, a link to the online Trip Planner for Translink buses and Skytrain routes, including from the Tsawwassen Ferry Terminal: 
We will post more information as it becomes available. 
2. Elizabeth May National Lyme Strategy bill. (Dave) Voting will take place MAYBE early 2013. Track the bill's progress on this link:

3. Our new website  is up and running!  Many thanks to Nicole and Dave.  (replaces (Dave)


4. Lyme Support Library. This 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. Is there any book 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.

NEW additions to the library!  
Beyond Lyme Disease
 by Connie Strasheim.
Under our Skin DVD - thanks to Lisa Robertson for the donation to our library!
5. Useful things you can do:  a)  Keep a symptom/treatment diary  b)  Chart symptom severity  

6.  Worldwide Lyme Protest  Canada has signed up and has its own facebook page:  There will be events all across Canada in May 2013 (date not set yet).  Do we want to be a contact, set up an event for Victoria?


7. Reminder to sign the World Health Organization (WHO) petition: Take action on Tick-Borne Diseases!   
Tick-Borne Diseases are a hidden epidemic despite the fact that cases have been documented in just about every part of the world. Here is the link for anyone who wants to sign the petition that is to be delivered to WHO:

8. New Biofilm Research Continues to Prove Chronic Lyme Disease (from Jenna's Lyme Blog)
Dr. Eva Sapi recently published a ground-breaking paper on the role of biofilms in chronic Lyme. Hinted at in the film “Under Our Skin”, the role of biofilms in the growth and protection of Borrelia burgdorferi explains so much about the existence of chronic Lyme disease and the reason why people feel so much better on antibiotics only to relapse after the drugs are stopped.  In the Introduction, Dr. Sapi writes:
"In addition to its familiar corkscrew-shaped spirochete form, Borrelia burgdorferi can transform from motile spirochetes into cystic, granular, or cell wall deficient forms in the presence of various unfavorable environmental conditions.
For example, cystic forms can be induced by unfavorable conditions such as nutrition deprivation, high ambient pH, or adverse temperature.
It has also been demonstrated that cystic forms are able to revert to vegetative spirochetes in vitro and in vivo, suggesting that these alternative formations are one of the ways that Borrelia burgdorferi survives in otherwise unfavorable conditions.
Besides the cystic form, agglomeration of spirochetes into organized aggregates, containing numerous cystic forms, granules as well as spirochetes, has been also observed both in vitro and in vivo.”
If you haven’t read Dr. Sapi’s article in Townsend Letter on how to effectively treat Bb, co-infections and the biofilms they hide in, be sure to read it at  And here is a short video on her work towards curing Lyme disease

9.  The Thirteenth Annual ILADS Lyme Disease Conference was held in Boston, Massachusetts on Nov 2 to 4.  Videos from the event will be available near the end of November and ILADS will be streaming select presentations on Dec. 1st and 2nd. For information on the streaming schedule go to and click on Register Live Streaming  

10. Dr. McKinney is excited about working with Dr. Ceaser and he mentioned that he may be open to coming and explaining his protocol to the group: Apparently he is having good success with using this therapy to treat Lyme patients.  It is expensive though. 

11. Movie Night.  Merina will like to invite group members and their friends to come to a showing of "Under Our Skin" on Saturday, December 8 at 7 pm.  Admission is free, but if you would like to make a donation, it will go to the group's library fund.  The award-winning documentary is 90 minutes long.  Refreshments will be provided.  Please contact Merina for directions. 

12.  The Public Health Agency of Canada updated its Fact Sheet on Lyme Disease in July.  (Dave)  Here is the link:  

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

NEXT MEETING will be on January 27th, 2013