This week a major news story about Lyme Disease broke here in BC. it made the front page of the vancouver sun newspaper.
BC DOCTORS LACK ABILITY TO DIAGNOSE LYME DISEASE
in a nutshell, a confidential, internal report about lyme disease in BC that was commissioned by the BC government came to see the light of day this week. this report proved what lyme patients across the country have been saying for years - that the current testing is flawed and inadequate and is used mainly to deny patients access to treatment.
the report also revealed:
"the majority of GP's lack knowledge about LD"
"testing is poor...better testing is needed to prevent progression to chronic disease"
"no treatment for chronic LD patients"
"the current state of diagnostic methods for chronic LD and other related tick borne infections is inadequate"
the report goes on the make 8 recommendations for change to be made in our province. you can read the report in full by clicking on the following is link: the 8 recommendations cited in the report start on page 44
SCHMIDT REPORT ON LYME IN BC:
following day, mike farnworth, a leading NDP candidate endorsed all of the report's excellent recommendations and called for action from the BC government to follow through with them. here is the link to that:
OPEN LETTER TO THE HEALTH MINISTER
less than 24 hours later the government released a statement saying they have pledged 2 million dollars to fund research for chronic diseases - CFS, fibromyalgia and lyme disease
BC GOVERNMENT PLEDGES 2 MILLION
this is all great and exciting news. the truth is FINALLY coming to light. it is the start of a new day for lyme sufferers in BC (and hopefully across canada). we are possibly on the cusp of a huge breakthrough in the lyme community - but we need your help to keep this moving in the right direction!
HERE'S HOW YOU CAN HELP:
here is an opportunity to get involved - if there ever was a time when we needed for people to make their voices heard on our behalf and on the behalf of those so devastatingly impacted by this disease, it is NOW.
for those that can, please write letters, send emails, make phone calls - there are two critical areas of concern that need to be addressed:
1. please hold the government accountable in following through on the recommendations made in the report. click here to read the 8 recommendations (start on page 44).
2. ask, beg, demand that the lyme disease community is represented at the research table - specifically the Canadian Lyme Disease Foundation (canlyme). it is far too easy to direct research in such a fashion as to give erroneous data. we have seen this happen in the USA with the IDSA panelists who refused to review or take into account the medical research and peer reviewed literature that proves the existence of Chronic Lyme infection.
to date, canlyme has not been invited to participate in this ground breaking research initiative - despite their repeated requests to do so. WHY? Please do not allow our government to take a biased, one sided approach to their research. the lives of many canadians depend on that.
at the end of this blog post, you can find links where YOU can make YOUR VOICE heard. Please! this is so important to our family. change is so desperately needed. we do not want more families to go through what we have and continue to go through. it is imperative that the government implement the recommendations put forth in the SCHMIDT report. the lives of so many Canadians depend on it.
if you don't know where to start or what to say, the following is a letter that friends of our family wrote to the minister of health. they have given me their permission to publish it here. you are free to "use" this as a "form letter" or use it as a jumping off point to write your own letter.
Dear Minister Dejong,
We are writing to express our huge disappointment in how the diagnosis and treatment of Lyme Disease is handled in our province. We personally know a number of people suffering from Lyme who have had to travel to the States for appropriate diagnosis and treatment, at great physical, emotional and financial cost.
Our province's position on Lyme has resulted in maintaining inadequate testing for Lyme. Doctors in BC are woefully uninformed about Lyme, and put their medical licences at risk if they treat Lyme patients.
We have always been proud of our medical system, but observing how our country and province deal with Lyme patients has changed that pride to profound shame and frustration.
The recent government report highlights the fact that we need better diagnostic testing, and that doctors need more training so that Lyme can be treated easily when caught in the early stages. Waiting for years for correct diagnosis and treatment is creating an unnecessary drain on our medical system, and is devastating the lives of Lyme sufferers.
There is a great opportunity here for the government to acknowledge the injustice provided to people with Lyme and their families, and to immediately begin to implement measures to change the current deplorable situation. Many lives depend on your response.
Thank you for your consideration,
Susan and Ian Chubb
write a letter. send an email. make a phone call. please.
no child should hear;
"i know you have a life threatening illness but i'm sorry, i can't risk my license to treat you."
but that is what a pediatric doc at BCCH said to our son parker
no child should hear;
"yes, i know your lab came back positive for a tick borne infection but i'm not going to treat you! go see your guy in the USA . get him to treat you."
but that was what our family doctor of 19 years said to our son taylor upon admission that he had a positive test result for an active tick borne infection.
help us advocate, lobby and push for positive change for the diagnosis and treatment of Lyme in BC and all of Canada - so that no more families and children will suffer at the hands of an ignorant and inadequate system which is based on antiquated medical literature and biased "scientific opinion".
on behalf of our family, we would like to send out a HUGE THANK YOU to lyme warriors, LLMD's and those who have and continue to advocate for change on behalf of the lyme community. and thank you to those of you who continue to support, encourage, pray and unwaveringly stand with us on this journey. we are humbled.
vancouver sun reporter who broke story:
pfayerman@vancouversun.com
editor at the vancouver sun:
sunletters@vancouversun.com
editor at the globe and mail:
newsroom@globeandmail.com
health minister, mike dejong
email: mike.dejong.mla@leg.bc.ca
phone: 250-953-3547
drop your local MLA a line:
MLA FINDER
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