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Prevention is Key to Staying Tick Free

May 1, 2018

Prevention is Key to Staying Tick FreeI remember it was a cool October day when I went outside to do yardwork with my husband. I remember dressing in layers and not having to deal with mosquitos. I remember that I stood in the yard along the woods line while my husband threw brush and other debris out into the yard for me to put into the wagon to be disposed of.

And I remember that, at the end of the day, less than 12 hours later, I had an engorged tick attached to my side and I remember that my life was forever changed.

That was 2009 and no one was talking about the tick problem like they are today. People went about their business, playing in the yard, going for walks and even hunting without taking any precautions against ticks. There’s a saying “You won’t get it until you get it” and I’ve seen that from a front row seat. In my two-year journey for a diagnosis followed by years of treatment after treatment, trying to find what I would respond to, my view from the front row has evolved. Given all that I and my family have gone through and hearing the fear in people’s voices when they even think about sending their children out to play or off to camp, I know that sharing my story is motive enough for me to have implemented a prevention plan into my daily routine. But is it enough for you?

Is it enough to just share my story in order to get people’s attention and get them motivated to their own prevention habits? Along with my story, I share about prevention ~ treating your skin, clothing, pets, homes and yards ~ but is it enough? Is it enough to share statistical data about the tick endemic Maine faces and how tick-borne is on the rise? In 2017, we had over 1833 new cases of Lyme Disease, 663 new cases of Anaplasmosis and 117 new cases of Babesia, a malaria-based tick-borne disease. I have even shared that I’ve lost friends and many advocates have lost their fight to tick-borne disease. But is that enough to make people sit up, take notice and start using prevention products?

I’ve blogged about the controversy surrounding Lyme and tick-borne disease that I knew nothing about when I first got sick, but that I got caught up in when trying to get treated. Why do medical providers fight one another over the care of a patient? Why is new research revealing diagnostic tools and treatment options that are being ignored? Why are more and more families going broke trying to save their loved ones by paying out-of-pocket expenses for treatment of “the fastest growing infectious disease” per the Federal Centers for Disease Control, that insurance companies are denying hand over fist? To those unaffected by tick-borne disease, this is hard to wrap your mind around because you never imagine that you or your loved one is going to get sick from a tick bite or be misdiagnosed, under treated and become debilitated with every passing week and month. But this is the reality of a chronic Lyme patient and most of us know someone who is in this fight right now and although you might be thankful that it’s not you or your family, without taking prevention precautions, its just a matter of time before our story becomes your story.

I wear two hats: I share my story to prevent others from having a tick encounter, from going down the same path I was forced down with misdiagnosis and mistreatments. I also help those exposed to tick-borne disease get connected to the proper resources in order to regain their health. Neither of these options were available to me when I got sick. I made a lot of mistakes, went to a lot of the wrong doctors, wore a lot of incorrect medical labels and wasted a lot of time and money. I lost six years of my life and faced over $250,000 in medical expenses denied by my insurer or not covered when I lost my job and insurance coverage. It’s scary to lose your job due to chronic illness and its even scarier to lose your insurance and wonder how you’re going to pay for office visits, tests and treatment. But this is the reality for so many Mainer’s who are afflicted with Lyme and tick-borne disease.

I am an avid gardener and I love to spend time outside in the warm sunny weather, playing with my dogs in my yard and I needed to have a plan to regain that back once I went into remission. I didn’t ask for that tick bite and infection that robbed me of so much and I certainly didn’t do anything to deserve it. But I also didn’t do anything to prevent it.

The takeaway from my column is this, if nothing else, please remember my story and what I went through. Please remember that having a tick encounter is a choice and one that you will have if you do nothing about prevention. Please remember the fight that so many patients go through, the struggles and hardships that they face from having a controversial medical condition that has medical providers at odds with one another and one that keeps them debilitated by misdiagnosis, insurance denials and the inability to pay out of pocket for treatment.

Maine may have a tick endemic that puts us in the number one position of the top fifteen most endemic states, but you have a choice to put into action a prevention plan for you and your family. Protect yourself, your pets, your home and yards and get back outside, enjoying the outdoor activities and life in Maine as it was meant to be. For more information about prevention, please visit our website at www.mldse.org.

Paula Jackson Jones is the President of Midcoast Lyme Disease Support & Education (MLDSE), the Maine-partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup, active in Maine’s Lyme legislation and a member of the Access to Care Services and Patient Support subcommittee of the Federal HHS Tick-borne Disease Working Group. You can reach her at: paula@mldse.org.

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