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A PERSONAL INVITE

Posted May 19 2013 6:17pm
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
and 
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.



SHARON'S STORY

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.  

Sharon
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