My Open Letter to Doctors, Nurses and all Health Agencies about Lyme

I don't know if this letter will be given much credit, I am just an average individual who has been battling Chronic Lyme for 4 years.  ...

Thursday, May 10, 2018

VOCAL - Voices of Canadians About Lyme Speech May 5, 2018 at Ottawa City Hall

I don't need to tell you my story - the fact that you are here (VOCAL) suggests you have either lived it or heard it…Atleast one very similar. 

I was a recreational athlete and a park manager, who loved being active and in the outdoors.  Who, through years of misdiagnosis went from running an Ironman to barely being able to walk and fulfill her job duties.  

Sure it varies slightly from one of us to another, but every story includes some version of 
  • losing most of your money to treatment 
  • having to change or give up your job, 
  • losing a home, marriage or friends
  • losing who you were, social interests and many abilities 
  • and spending years of hell trying to get better
  • And thats if you're one of the lucky ones
You don't need to hear my story its yours or a friends or a relatives.  Its becoming too familiar to way too many.  

Very little is changing what is obviously a glaring epidemic and no one but those who know the torture of Lyme are doing anything about it. 

As you may know, I walked here today. I walked here with many of my tribe, who have endlessly supported me and carried me through the hell called Lyme.  

As you may know, today I started my plan to walk the Ontario portion of the TransCanada Trail.  

I don't know how often I can walk, how far, how fast, I may have to bike or rest, I just cant know.  Lyme will decide every day what I can and cant do.  

But I do know this, I have fought too hard to get to this point to not do what i can to help others.  I don't plan to stop walking until something changes for acknowledgment, treatment and diagnosis of Lyme.  Where that will take me no one knows. 

People say to me why walk? 

I walk because I once had a very hard time doing so and doctors told me I was fine.  
I walk because I promised that if i was ever able to again, I would do something about this medical travesty. 
I walk because the burden of finally understanding where the problem is and not being able to do something about it is literally too much for one person to bare.  


I walk because I cant take one more call from a friend about a child that didn't not get treated after a tick bite.  
Because I cant take one more email from someone who thinks they might have Lyme but no medical professional will believe them. 
I cant take another message from someone who was told they are fine 
- it wasn't attached for 24 hours 
- they weren't in a high risk area 
- or we don't have lyme here

I walk because doctors smirked at me, they told me I was perfectly healthy, maybe stressed, possibly overtraining or needed to wait for things to get worse.  
I walk because I should not have to have used all my retirement savings to get better when I told them something was wrong for years.  

I walk because I see it happening everyday, I see the doctors ignoring it and I see the patients crying for help.  

Because the only thing I can tell someone with Lyme is
  • prepare to get sicker than you have ever been, 
  • prepare to use up all your resources, 
  • exhaust the support of those around you 
  • and challenge everything you knew about yourself. 
Dr. Sam Donta said it best“if you ever want to torture someone, give them Lyme.

I walk because top medial organizations can use decades old science and very few studies to rebut new science and criminalize the doctors who try to help.

I walk because Canada should no longer be able to promote a treatment protocol based on one very bad study… that was not very successful… but determines whether someone suffers needlessly for the remainder of their days.  

A treatment protocol that is no longer approved by the Institute of Medicine.  
But we still follow it? 

I walk because many politicians asked me to share my story, swore that no patient should ever have to travel to the US again… but then did nothing to change it.

How is it that we all know there is a problem in this country but we continue to do the same thing, the same way - and expect a different outcome - is that not the definition of insanity?

I shouldn't have to explain why I walk when: 
  • Kids are in wheelchairs 
  • adults are dying lyme carditis 
  • most are suffering with crippling pain 
  • and families are losing their homes
AND all it would have taken was an appropriate dose of antibiotics after the bite or treatment when ill 

But I also walk because those suffering are also sharing the studies, challenging the scientific organizations and helping others get treatment.  
Because everyday a Lyme warrior is meeting with an MP and MPP 
They are protesting, raising money, lobbying, educating and fighting and they shouldn't have to.  There is no reason for it - there is treatment - if caught early on. 

I walk because even after diagnosis, treatment and much improvement the doctor that misdiagnosed me doesn't care to know how, why or anything about Lyme.  

I walk because Public Health educates about Lyme with very black and white statements - that are not always true
Because they say - there is no need to worry 
Because they even have the gall to say Lyme patients are fear mongering
I say to public health - walk a day in my shoes and then you will know what to say

So I walk. 

And I make this vow to my friends, those fearless warriors battling this disease. 
I make this vow to all the Lyme advocates who are relentlessly fighting to create change
and I make this promise to present and future generations who are at risk…

I will walk, bike, take a break if I have to and rest when I need to and then walk again until something changes…
I will walk for you, for me and for everyone 
because no one needs to live as Lyme patients have to…there is no need
The only need is change.  

I will walk for life if I have to because it is better than the torment of seeing, knowing and experiencing the misinformation, the misdiagnosis and the mistreatment. 

I will be quite honest with you, I don't know if my body can do this. I hate Lyme for that.   But I got to this point with unconditional support from my tribe, blind will and determination and a lot of help with from God. So with all of that backing me how can I not keep going.  

So for the next little while, you know where to find me: 
On the TransCanada Trail in Ontario,  praying for change.  

Until then….I walk. 

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