Welcome to my blog! This is a place of information and hope for fellow Canadians who are suffering from Lyme disease. I want to share with you the knowledge I have gained during my fight with this debilitating, frightening, and misunderstood illness. I hope you will be blessed.

Sunday, September 01, 2013

A superb book

I have finally finished Cure Unknown - Inside the Lyme Epidemic by Pamela Weintraub.  I've been working on it for at least a year!  There is a lot to digest with this book, and Weintraub has left no stone unturned in this study of the history and politics surrounding Lyme. 

Weintraub, her husband, and their 3 children all contracted Lyme disease, and she tells their story in detail.....from onset of illness, to misdiagnosis, to diagnosis, to treatment.  I'm sure many of you can relate!  (Me, too.)

 
 
Weintraub offers many excellent insights into the Lyme predicament.  One of her statements struck me as I read today:
 
"When it comes to science, questions on methodology are crucial.  Science can be flawed, it can be tricky, Jonas Salk taught me, but science is all we have.  If we are ever to unravel the mysteries of Lyme disease and find a cure, it is science - pure and unadulterated - that will lead us home.  We need science, but different science.  We must travel the road not taken.  Sometimes you just need to start again."  (p. 348)
 
This got me thinking about all of the effort that is going into this grassroots Lyme movement, led mainly by the victims and their families.  These efforts would include support groups, community viewings of Under Our Skin, interviews on local television and radio, letters to the editor, blogs, websites, information booths, Lyme walks, green bracelets and t-shirts, books, petitions, and seminars.  (Wow!)  But what, I ask, are these things accomplishing, apart from informing the public about the dangers of ticks and providing information to those who are sick?  For ALL of this effort, have we truly advanced our cause?
 
Well, perhaps there has been some improvement.  LLMDs are no longer persecuted in many U.S states now due to the passage of laws protecting them.  But there remains the issue of the CDC and the IDSA who have dug in their heels and refused to acknowledge that there is another useful standard of treatment.  And this is despite the evidence of so MANY clinical cases.....myself being one of them. 
 
So, what will it take?  What will change the system?  As Weintraub stated, we are going to need science to prove us right before there will be any sort of real change in the way Lyme is diagnosed and treated.  And so, we must do what we can to support this research and to get it published.  There is research happening as we speak, but we have yet to see a lot of fruit from their labour, i.e., true changes in the "system". 
 
And yet, though this post sounds a bit pessimistic, I truly do believe that one day things will change.  It will just take time.....lots of time.....but unfortunately many people just don't have a lot of time to wait.



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