I think most of us struggling with Lyme Disease would say the same thing.
Like many others, I suffered for many years with no legitimate diagnosis and no effective treatment. Finally, my guardian angel, an integrative medicine doctor, decided to do a simple blood test. That blood test led to many other blood tests, which finally confirmed my diagnosis of Lyme disease.
My journey probably started when I was in elementary school and came home from a camping trip covered in ticks; however, my debilitating symptoms didn’t start until I was 29 and diagnosed with my first autoimmune condition - Grave’s Disease. There were signs before that, such as, severe joint pain in my shoulder and lower back, but nothing to rouse suspicion of a chronic infection like Lyme.
When I was 33 I was diagnosed with my second autoimmune condition - Anklosing Spondylitis - following a period of extreme work stress. My doctor told me there was nothing I could do to stop the progression and that eventually I would have to be on medication with dangerous side effects.
The Grave’s Disease and Anklosing Spondylitis only explained some of the symptoms. Why was I still having night sweats, heart palpitations, headaches, numbness in my hands and feet, ringing in my ears and blurry vision? I kept asking questions, and I kept getting the same answer, “We’re not sure.”
I saw the top rheumatologist and infectious disease doctor in the state, but neither one could explain my symptoms or were willing to run any more tests. Finally, they came to a stand still, unable to distinguish between an autoimmune or infectious response. When they stopped returning my calls I knew I was on my own.
I had to take my health into my own hands. This led to reading numerous books and countless hours of research on alternative approaches for treating root causes of autoimmunity, and one of those causes happened to be Lyme disease.
Finally, I found the right doctor, who like me, wasn’t prepared to quit until we had an answer. She referred me to am amazing Lyme Literate Medical Doctor, who was the first person in a year and half of non-stop appointments to offer me a real treatment - a simple prescription for doxycycline.
I'm a year into treatment and continue to have complications. The doctors decided I didn't have Anklosing Spondylitis, but instead a rare rheumatological condition called SAPHO Syndrome, which causes chronic bone infections. The next step is to treat those infections.
Sometimes I wish I could go back and tell my 29 year old self to take care of myself. Maybe if I had been kinder to myself I wouldn’t have triggered this response in my body. But I can’t. And I accept this as my journey. My health concerns have led me to appreciate and embrace so many opportunities that I may have otherwise let pass me by. I live a charmed life. How many people can say they’ve traveled to Europe four times. I know people who’ve never been on an airplane. Lyme disease has driven me to want to see and experience the world. My wake up call to always be wide awake.
This is not my whole story. This is only the beginning. My awakening. The true story starts now.
“The body knows things a long time before the mind catches up to them.” - Sue Monk Kidd