Lyme Time at the fair

By Paula Jackson Jones | Sep 02, 2017

As I sit writing this week’s article, I am six days into the Union Fair and, oh, what an emotional week it has been. I truly enjoy talking with people. I always have. My grandmother used to tell me that I have an old soul. I have a heart for helping people. So, to be surrounded by people at a local fair for an entire week -- I am in my glory.

Our booth has been flooded with visitors of all ages, some touched by tick-borne disease and others who want to know more about prevention. Many avid readers of my column pleased to meet me in person. Many shared old wives’ tales and debunkable myths, while others asked why isn’t the state of Maine doing more about the tick problem. Many came to the booth, pensive after listening to me share my personal journey, and found validation of their own. And when handed resources to enable their journey towards health and wellness, through tears and hugs, were once again renewed with hope.

I spoke with so many people who had previously been treated, who were told that in time they would get better. Just give it time. Oh, if only it were that simple. In my case, giving it time meant that the infections would spread, meant it would be harder to diagnose the true cause of my debilitating symptoms, meant that my recovery period was much longer and more expensive. In the Lyme community, “giving it time” pretty much means they’ve done all they know to do and now you’re on your own.

Hearing all the variances in how people were treated -- or not -- even after all the research and work that’s been done, I felt that I needed to do something. I reached out to an acquaintance at MaineHealth and I asked this question:

“With a federal protocol in place for endemic regions (Maine is now an endemic state), why are so many doctors treating patients so differently?” And I was told that this is “common with many illnesses.”

Right now, a patient in Maine can go to their doctor or ER with a bullseye rash, a clear indication of Lyme, and they can leave with any amount of treatment from seven, 10, 14 to 21 or 28 days. And I’d like to say that it depends on where you go, but it doesn’t. In three years, I have heard stories from people from all over the state. I will say that who you see does make a difference. If you see a provider who has more education with tick-borne disease, they are more apt to recognize the symptoms and know how to appropriately treat. I say "appropriate" because so many of the folks who reach out to me are still sick. So, patient care is dependent upon a physician’s knowledge.

It's heartbreaking to think that in 2017, who you see determines the outcome of your illness, when education is so freely available and that a standard federal protocol for an endemic region that continues to deal with growing numbers of new cases of not only Lyme but other tick-borne disease, should be mandatory and enforced across the board -- but it is not.

The time spent here at the fair has been valuable and eye-opening.

I was angered to hear how doctors continue to treat people; I was saddened by the personal stories; I was elated to receive tearful hugs when I offered helpful resources; I was burdened to remain professional when attacked verbally by naysayers; I was challenged and criticized for not doing more...

And then it happened...

Someone came along who had lost all hope of ever getting better, who'd succumbed to the idea of a pain-filled future, who sat by silently and listened as I shared my personal journey from misdiagnosis to debilitating health to struggling through years of treatment to finally full remission and said, "Thank you, you have given me back hope," and I was once again reminded of why I began advocacy work in the first place.

Comments (1)
Posted by: Mary A McKeever | Sep 06, 2017 18:27

Wonderful! Keep up the god communication.

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