totTicked Off Tuesday -“Killer Spirochetes” – by Kim Sampson – September 8, 2009

I have decided to take one day a week to add commentary to the “World of Lyme”, I’m calling it, “Ticked Off Tuesday”.  I am an opinionated person who is very often “ticked off” with much of the Lyme controversy.  So, I thought it would be good to throw out some opinions and see what others are thinking as well.  I figure it is a good way to initiate dialogue and debate.  It is when many parties weigh in on an issue that it actually becomes clearer.

This week, I want to talk about lyme fatalities.  Yesterday, a member of the Lyme community was laid to rest in Washington State.  Her name is Andrea Ortiz-Peterson.  I never knew her, but I do know her fight, as do many of us.  She was only 27 year old.  And, it has been just short of a year that my friend Leslie Wermers passed away from complications, due to Lyme Disease.  How is it that a “difficult to catch and easy to cure” disease claims so many lives?  How many must perish before this disease is taken seriously?

I think much lies in the public perception of our disease.  There are no commercials with celebrities encouraging us to prevent this disease…there is no immunization, unless you are a dog, and it is an invisible disease…people can’t SEE our illness so it must not be there.  The movie, “Under Our Skin” is helping to give Lyme Disease and Tick Borne Illnesses credibility in the public arena.  However, I think we need to do something more….it is all in the marketing.  I am thinking “killer spirochetes”.  If we market the disease with “killer spirochetes” people would run in fear…like Swine Flu.  If people found out they could get “killer spirochetes” from sexual contact, blood transfusions, or organ donations….(among other ways) people might think twice…out of fear.

I am being a bit sarcastic in my marketing plan, but at the same time, isn’t there some truth in it as well?  We need a commercial with some scary cartoon “killer spirochete” along with some famous celebrity stating how Lyme can be transmitted, and how people are dying.  After all, isn’t that what the pharmaceuticals do to get people to get vaccinated and to request prescriptions from their doctors?   They market fear.  Again, I am not serious,  just posing an idea to change public perception of Lyme Disease.

Here’s the deal.  I have not met one doctor, who believed in chronic lyme disease… (or not), to disagree with the fact that untreated lyme can cause problems with the heart, brain and joints.  OK…we all agree on that.  So, call it what you want.  These spirochetes are in our warm toasty bodies and are slowing making swiss cheese of our organs.  Why can’t we fix this?  Why are people dying?

When this disease is not taken seriously, and when people die, it makes me feel invisible…like I have no value in the medical community.  And with that sort of support, or lack of…it just makes me think I am going to slowly die of this disease, too.

What do you think it will take to get this disease taken more seriously and for people to stop dying?

“Nobody can go back and start a new beginning, but anyone can start today and make a new ending.” – Maria Robinson

With you all! //Kim