There’s a running joke in my family that I’m a “medical mystery”. I went from normal to suddenly, devastatingly ill far too quickly. No doctors could fully answer all of our questions. I was bounced around from one specialist to another for years. I was unhappy, and honestly, I was angry that nobody could find a solution.
That is, until two years ago.
I began my Lyme disease journey on January 1st, 2009. I still remember staring at that blue Doxycycline capsule for a long few moments before I finally took the plunge and swallowed it down, along with some apprehension and a lot of relief. Finally somebody had looked at me as a whole, sifting through the symptoms and found an answer for me!
Lyme. Bartonella. Babesia. The list goes on.
Two years later I’m still treating. And, it turns out that I’m still that “medical mystery”. Above all else in a doctor I want them to be honest with me. I need them to talk to me so that I learn to trust them and they trust in me. I love my LLMD dearly. She has been a rock in this journey. However, she’s not strictly speaking an LLMD. She treats Lyme, but not exclusively.
In January she was honest when she turned to me in her office and told me that she didn’t know what to do next. Her treatment regimens weren’t working with me as she had expected them to. She is afraid of making me more toxic, creating more harm than good. I don’t blame her. I just wish this weren’t the case.
She wants me to visit another Lyme specialist for a consultation and receive a second opinion. I was instructed to see a neurologist for my headaches, and to see my neuro-ophthalmologist for a check-up. I feel as though I’m back where I was two years ago, being doled out to different specialists while they scramble to solve the puzzle.
Molly, “medical mystery” at your service.
I haven’t lost hope. No, as I said last week -“I feel as though I’m adrift. I’m bobbing along in the waves waiting for the clarity that calm waters will bring.”
I’m waiting for my turn to discover those calm waters.
Much love,
molly
4 comments
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February 1, 2011 at 7:25 pm
Ashley van Tol
Aw, sorry Molly. I’m so glad your positive attitude is still keeping you afloat, it will always serve you well in health and in life.
February 3, 2011 at 2:12 pm
Kim
Molly, Sorry to hear that. I hope those calm waters and clarity come soon. I did a lot of scrambling between specialists too my entire two years. I remember joking “If I have 8 specialists, does that make me really special?”
Just for the record… I think you’re pretty special :) And I hope these doctors treat you right and can chart a clear course for your next steps in treatment.
April 6, 2011 at 10:52 am
Janelle
HUGS! Keeping a positive attitude isn’t always easy but I’ve found it so important in my own journey. You’ll find someone who can figure this medical mystery out and you’ll look back at this time as a past memory.
Janelle
June 9, 2011 at 5:56 pm
dizzygrl05
Nell, thank you!! Huge ((hugs)) back, girl. We’ll keep positive together!