For years I went from doctor to doctor, exhausted from dead-ends and health care physicians who were dumbfounded. In seven years, no one told me to get a Lyme test (despite nerve pain, brain fog, and debilitating fatigue…major markers). Yeah, I take some blame, I suppose. I started every doctor visit with “I know this sounds weird but…” or “well, when I made the appointment two months ago because that was your first opening, my symptoms were this and that, and now they are different…”, “I’m so sorry, I know you’re a cancer specialist and I know I’m not in that category but so-and-so recommended I see you” or “the last specialist you sent me to was not able to find answers and I know I keep coming in, but something just isn’t right…”.
I can remember a few instances where I sat on the table before the doctor even entered the room and just began sobbing at the thought of starting over again with the laundry list of symptoms that were melting into each other over the years. I couldn’t even keep it all straight. I would lie on the table and curl up from the pain. I tried to smile when they came in and sound logical so they would take me extra seriously. I’m really not a complainer by nature but this illness made me live at the bottom of my barrel. I was reduced to the weakest form of myself for years.
After a few failed doctor visits I would just stop trying. Too exhausted. Then, a couple of months later I would try all over again.
I want you to know that you are not alone. My personal mission is to have Lyme disease on the list of the five diseases my neurologist initially specifically looked for including ALS, Lupus and MS. I could have had a seven year jump on treatments. Why, at over 400,000 new cases of Lyme (400,000!) every year, isn’t it included in this list? I’m demanding change, and together we will get it done. If your doctor doesn’t seem to be familiar with Lyme, MOVE ON. The time is now.
Xo Ali
