May 19, 2013


local friends, a lyme awareness evening is coming to tsawwassen, BC and you are invited to attend! it is an evening that is designed to raise lyme awareness and educate GPs, vets, and the community at large.

Thursday, May 30 at 6:30pm
The "Little" House
5061 12th Avenue
Tsawwassen, BC

good friends of ours, sharon, mike and karen, have worked very hard to make this event a possibility. this invite is accompanied by sharon's personal story. she has given me permission to share her story.

but first, a bit of background.

sharon and mike have become good friends. we came to know them when they quite literally arrived on our doorstep one afternoon feeling as though they were out of hope and out of options. they suspected that sharon's debilitating symptoms were caused by lyme. after all, she had been bit by a tick in nelson, BC and had had a peculiar rash. yet, doctors dismissed this finding when her Lyme test returned a negative result.

i remember our first meeting as clearly as if it were yesterday. sharon's pain and suffering were palpable - and i was all too familiar with the desperation, the confusion, the sense of abandonment and the fear that her and her husband felt in the face of her desperately declining health and not knowing where to turn for answers or help
i didn't know how to help. at that time the only viable treatment options were south of the border. it was a difficult day. it stayed with me for a long time. 

to see your life or the life of your loved one slipping away and be abandoned by your doctor and medical system is nearly inconceivable. yet, this is the reality of a lyme patient. 
this. must. stop. 
yet, as long as lyme is regarded as a four letter word in our health system and the general public is not adequately made aware of the risk, sharon's story will not be the last.

preventing this from becoming someone else's reality is the fire that fuels those of us with lyme to so doggedly and determinedly spread awareness and educate the public.
please come out and show your support and learn how to protect yourself and your loved ones. 
ticks know no boundaries. 
everyone is at risk.


Dear friends and family,

As many of you know, I have been unable to work since February 2011 when a mysterious ailment had me in emergency room with excruciating pain, leading to a substantial decline in cognitive ability thereafter.    

Hundreds of tests were run for every obscure disease under the sun.  I was hospitalized twice: once for four days, and then again for a two week period where doctors ran intensive tests.  Eventually at one of the many specialist visits, Lyme disease was suspected.  The standard initial Canadian Lyme test was done and came back negative (we have since learned that this particular test is highly inaccurate).  After seven months of going from specialist to specialist, a friend who had gone through a similar experience consulted with me.  Mike and I ordered the tests he recommended from a private certified lab in the USA.  We reviewed them with the Doctor from the lab and were informed that I was 98 percent positive for Lyme disease.      

In the process of trying to get help, we lost our family’s doctor of 20 years.  Doctors are reluctant to treat and most lack the knowledge of how to do so.  At a time when I was in immense pain, I felt abandoned by the Canadian health care system.  Mike’s employer gave him permission to work from home three days a week in order to care for me, with family and friends filling in on the days he couldn’t.  It was a very difficult period.  We will be forever grateful for the people that organized and helped us with meals, prayers & errands during this time.      

We were advised by others that I would need to go the United States for treatment by a Lyme literate medical doctor, but I was too ill to travel.  In September of 2011, Mike and I found a Naturopath who could prescribe antibiotics (plus support supplements) and since then I have been receiving treatment.  Getting better is not an easy process.  If my medication is reduced for any length of time, I rapidly regress.  Some people never recover and others spend decades trying various expensive treatment protocols.  Our own costs have been substantial.  However, there are a few bright moments such as this past weekend.  Accompanied by Mike and others we traveled to the Victoria Legislature Buildings for a Lyme awareness event.  I met others with Lyme disease and spoke with Elizabeth May (MP), Lana Popham (MLA), David Cubberley (retired MLA) among others.  The drawback to a day such as this is many days afterwards in bed.  

I am not alone in this situation.  There are hundreds of people with Lyme disease in BC.  Many never saw a tick or knew they were bitten.  It's not just a disease that attacks campers and hikers as people have been infected in their backyards gardening, on school field trips or just walking their dog.  We know of people in every area of the lower mainland with Lyme disease.

A friend of mine, Karen, whom I met through The Vancouver Lyme Support Group, was the interior designer of “The Little House” in Tsawwassen.  They have graciously offered the use of the building and their assistance to hold a “Lyme Awareness Evening”.  

On Thursday, May 30th at 6:30 pm we are inviting Dr. Murakami (a retired BC Doctor and Lyme expert) to speak.  The evening is designed to explain preventative methods, early signs and symptoms, late symptoms, how to properly remove a tick so that it doesn't infect one further, treatment protocols, et cetera.  Gwen Barlee, the policy director for the Vancouver Wilderness Committee, will speak to the political issues surrounding the disease.  Mike has been asked to speak to how this specific disease affects a family.  There will also be a Q and A.  A poster with more details is attached.  

It would mean a lot to me if you would come out to show your support.  Thanks for your time.  



Dawn said...

Thanks for organizing this event Sharon. We're crossing from Vancouver Island to attend. Hopefully our daughter, who has Lyme, is having a "good day" and can come wiith.

TIANNA said...

This seminar was awesome!!!! Me and my daughter loved it. Dr. Murakami was so informative about lyme. My story is long so wont get into it but we think its nice everyone can come together and do something like this!!!! We are in richmond, but it was worth the time and travel feeling this ill. Thanks

TIANNA said...

Hi just wanted to say me and my daughter enjoyed the seminar lastnight in twas. it was very informative. It was worth the travel and time coming from richmond as Im really sick. Its nice everyone could come together and do this,. Dr. Murakami is so nice and easy to talk to. Wont go into my 5 yr story but thanks for this opportunity!!!!

Alice Lees said...

Lyme sufferers are in Nova Scotia, just as they are in BC. The stories are so similar and the common denominator is Dr. Murakami. He shared with 150+ affected people, including family, in New Glasgow on May 15. Ill people find it hard to push more than personally,if that. Have you ideas to share on where to exert our time and energy to gain the change that must come?

s. said...

Hi Dawn
I hope you and your daughter were able to attend the event. Wonderful that you would come all the way from the island to attend. our family is so sorry to have missed it - we were away in SF seeing our USA LLMD.

Hi Tianna
I am so glad that you were able to make it and found it all informative. It sounds like we live in the same city! Would be great to connect - Just want to let you know that there is a local Vancouver area support group that meets once per month. Feel free to email me for details.