Monday, February 22, 2010

Mostly Train

Six months ago, I wrote Truck or Train  about a family member's struggle with advanced Lyme disease.  Friends have asked questions.

We had questions too, and were startled by some of the answers. 

Who knew that there are only SEVEN STATES in the contiguous US where the ticks I. scapularis or I. pacificus and their host-seeking nymphs that carry Lyme bacteria, have NOT been reported?   

Or that you could be bitten and NOT have the primary diagnostic bull's eye rash, in fact have no idea you have the disease until it is diabolically hard to diagnose because of the way Lyme bacteria mutates in the body?

The biggest question of all is how so many states can deny treatment to thousands of advanced Lyme sufferers.  In Texas, a physician who treats advanced Lyme risks having his/her license revoked because the state board doesn't recognize the disease beyond a short initial infection period.

For a human face to the questions, click the video trailer below for Under Our Skin, one of the top 15 documentaries nominated for this year's Academy Awards.

Since I wrote in August, my loved one has been to California and New York for the diagnostics and drugs she can't get in Texas.  She struggles daily with debilitating pain and disfunction, made harder by the knowledge that treatment for advanced Lyme can be a long road, maybe years. 

I feel lucky I get to see her each week.  As I walk out the door of her house, I pass a sign she's posted on the wall, one of the things that keeps her going when she can't.  It says I amaze myself!  

Her courage and spirit amaze me too. 

Words and photos by Kathleen Scott,for her blog Hill Country Mysteries. Copyright 2009-2010.


  1. We have ticks here in Ohio. I've pulled them off the dog before. Sorry about your loved one. That sucks.

    Love you, Kathleen.

  2. Yes. I think it's pretty common here although again, if you need real treatment, you'll have to find someone who knows what they're doing AND pay for it yourself. I have a friend whose daughter was infected many years ago and it went undetected for a long time and she struggles with it now.
    I don't understand the reluctance of the medical community to do something about this disease. I think it has something to do with the insurance companies. Don't you?

  3. I do remember you posting this.
    The aggravation on top of the sheer frustration of having this disease is brutal.

    I'm glad to hear that her spirits are so strong.

  4. Lyme disease devastates, and the added burden of having to find (not to mention finance) appropriate health care and therapy is one of so many injustices and indignities we need to face up to as a society.

    I ask myself - do we have the public will to change this system? I hope so but I am not at all certain....

  5. wow. . .I never knew. That's AWFUL.

  6. Your friend sounds amazing -- and resilient, too. I'm glad that she has you, as well. A supportive person like yourself, so full of love and warmth and good sense -- well, I can only imagine what that must mean to her. As for ticks and Lyme disease -- it's just all so creepy and awful.


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