How has Lyme Disease affected your life?
My Lyme story is long but the abbreviated version is that I have been really sick on and off for the past 25 years. At 12 years old I was diagnosed with Fibromyalgia. Now it is thought that it is more likely that I contracted Lyme disease at age 12 as I got bit by multiple ticks in my youth. I was treated for acne at age 15 with long term Tetracycline and started to function better and was able to live a relatively normal life. During this time I was sicker than most and always very tired. I also had a lot of pain in my body, mostly in my back and neck.
In February 2011 I woke up with incredible pain in my thoracic spine. As a result of trying to fix the pain I have three major spine surgeries (ACDF 5-7 that was revised again levels 5-6 and an 8 level thoracic fusion) with no pain relief. Through all of this I continued to get sicker and was unable to work as of October 2012. I have been on over 30 different medications trying to reduce the pain. Other symptoms over the past three years have been blurry vision, fatigue, memory loss, Bell’s Palsy, severe joint pain, trouble walking, tremors, rib pain, gastrointestinal problems, and depression due to all the pain.
Over the years I have had several Lyme tests and always had multiple positive bands but not enough to be CDC positive. In June of 2014 I tested positive through IGeneX. I have started on a long term treatment protocol which includes oral and IV antibotics. I have been diagnosed with late stage neurological Lyme (Borrelia) disease, Babesia, and Bartonella. My prognosis is that the treatment will take a long time and be difficult since I have had the bacterial and parasitical infections for 25 years. I struggle daily with extreme pain and fatigue. Every day is a challenge to get through and stay positive that I will someday feel better. I feel like I am a shell of the person I once was. Lyme disease hurts not only the patient but the whole family. It robs us of our spirit and passions.
What inspires you?
I am inspired to fight to make a difference in the Lyme community and to help spread awareness of the disease. I believe that something good must come out of all this suffering.
My favorite quote or inspiration as of late comes from the song Fight Song by Rachel Platten:
“This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
(Starting right now) I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me”
I listen to this all the time when I am struggling and need a boost!