I ’ve always loved mysteries, but I learned in 2009 that living through my own medical mystery was a million times less appealing than reading about one in a book.
That was the year I was suddenly hit with extreme fatigue, neck pain, daily headaches, and muscle weakness. A few months later, disabling vertigo and dizziness set in. Then came a cascade of too many symptoms to name.
The next several years passed in a blur. I visited at least twenty different doctors and underwent what felt like every test imaginable, only to be referred to still more doctors for more tests.
“I hope when people read my book, they feel like a bit of what they have been through has been validated. ”
In some cases, I was told that since the tests didn’t show anything, nothing was actually wrong with me, even though I was too sick to work or do much of anything by that point.
Eventually, through a combination of research and advice from my sister, I found a diagnosis: Lyme disease and dysautonomia. While I was able to find medication for dysautonomia—an autonomic nervous system disorder that can result from Lyme—every doctor had a different opinion on how to treat Lyme and my co-infections.
That was when I realized that finding a diagnosis was just the beginning of this journey. Once again, I set about researching—feeling as if I had solved one mystery only to be faced with a new one.
Frustratingly familiar
To those of you who have Lyme or care for someone who does, I’m sure all of this sounds frustratingly familiar. Because I was confined to my couch for much of this time, I read a lot, and although I enjoyed the escapism of books, I felt somewhat separate from all the able-bodied, healthy characters……….Join or login below to continue reading.
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