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How a Woman's Surprise Help Led Me to My Lyme Diagnosis

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Did you ever get surprise help with your Lyme disease? I sure did. I appreciate it, because if not for that help I might have died. When I look back with 20/20 hindsight I see lots of clues that should have had me on alert about my health.

Over the course of several years my need for medical care dramatically increased. The doctor would often say, “This is really unusual in someone your age.” But I didn’t get that something more serious was going on under the different problems. I had lost touch with how healthy feels and accepted downward spiraling health as a normal part of aging.

Chronic inflammation was a connector to all things going awry in my body. Multiple tick-borne infections were driving my immune system off the rails. I didn’t understand what was going on and the doctors failed to connect the dots between visits.

But after a few years of this, I was in so much pain, I was in compensation mode doing all kinds of extra things to cope with it. I wasn’t able to drive or push a grocery cart, because it just hurt too much. Naproxen and compression gloves were part of my daily routine. I had a special chair I brought everywhere, because sitting made my back ache. Even doing these kinds of extra things, I didn’t think I needed to figure out what was driving the pain. Thank God I got surprise help, advice and a push from an unexpected place.

Surprise Help at the Tipping Point

I started bringing my special chair and cushion to meditation class. I would set it up in the back of the room of 30 students because sitting in the hotel chairs was excruciating. Even in my special chair it was bad, I needed to get up and move around each hour and ease the stiffness and pain. After a couple of sessions watching this, my teacher Ellen said, “Mary, what is going on with you? You need to get to the bottom of this. Go get tested for Lyme disease.” She was unusually insistent.

What is Lyme disease, I thought?

So off I went to the doctors. They did the standard ELISA test which came back negative. Next month in a break from class Ellen asked me about test results. I said I tested negative, and she told me to go back and ask my doctor for a more definitive Western blot test for Lyme. The doctors did the ELISA test again and told me the result was negative. Fed up, I went and paid an independent lab for a Western blot test. Months after first requesting a Lyme test, I got the call saying come back in – I tested positive for Lyme disease.

Lyme Explains a Lot

Wow, what luck, I had someone who cared about me, in my corner, supporting me in the process of working through testing confusion, insurance red tape and I actually tested positive. Many people don’t and struggle to get the help they need.

By the time I had a diagnosis I had been ill for over a year, maybe more (I think about eight).

My Lyme and coinfections, Babesia and Bartonella among them, were well entrenched. The ongoing infections and inflammation compromised the accuracy of my immune system’s response. If this had continued I likely would have gotten sicker and sicker.

The diagnosis of Lyme, while tough, gave me the ability to get the right kind of help from my health care team, up-level and optimize my prognosis going forward. Each day now I take a moment to appreciate how much better I feel.

I am ever thankful of Ellen’s willingness to see me as a whole person and act in such a caring manner. I learned a huge lesson about seeing myself as a whole person, managing my health and health care team and taking good care.

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Photo via Ridofranz on Getty Images

Originally published: January 24, 2018
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