The frustration of Borrelia miyamotoi. Round and round we go. We thought things were going great, and on the outside they were. We had no idea what was happening on the inside. After years of what appeared to be remission from life-altering Borrelia miyamotoi, we are once again dealing with severe symptoms. The original blog was stopped because, hanging onto anything that helped, I didn’t want to jinx us. She was doing great! Why tempt fate? The journey had seemed to end. How naive of me.
Before I go any further, allow me to clarify. My daughter, now 23, is in the throes once again of multiple ambulances, emergency rooms, hospital admissions, and every specialist under the sun. Once again, the majority of specialists attribute her symptoms to anxiety. As a parent, when asked, trying to explain to these doctors that there is obviously a component of anxiety in this, though it is a normal level for what my daughter is experiencing, they grab onto that statement as if their lives depend on it and type it out in her visit summary and send her on her way. Trying to explain that she feels as if her body and mind are out of control and never knows when/if another convulsive episode will occur which is triggering her anxiety falls on deaf ears repeatedly. Why is this so difficult for the medical community to comprehend?
The frustration felt by both parent and patient is real. As I sat in the hospital trying to explain the difference between Borrelia miyamotoi and Borrelia burgdorferi for the umpteenth time (because the wrong test was run) to the umpteenth physician I can feel my annoyance teetering on rage. I have gone there and have told some doctors “Go do some research,” and “I’m not here to teach YOU,” but upon thinking about that, maybe I am. Maybe I am just that person to teach. Maybe sharing this desperate journey will teach someone what to look for, even if it’s only one specialist or doctor. I’m just tired. I’m beaten down. I’m an empty skin suit of a desperate parent trying to get through another doctor visit on nothing but hope.
So, once again, this is my blog. New and improved. I will be posting the old blog posts to show the past symptoms and struggles and visits and labs and tests and sleepless nights. I am hoping this touches someone enough to want to understand the differences between all of these tick-borne coinfections and what they do to a human being and the people that love them.
This is a story of undying love and devotion. This is a story about a search for support and answers. This is my story.
Life with Borrelia 