How has Lyme Disease affected your life?
Lyme changed my life more than I ever thought possible. I got my diagnosis in 2007 and I remember crying with relief at that time. I am a nurse and knew (or thought I did) that a few weeks of doxycycline and I would be better. Ha! Some symptoms disappeared, some exacerbated, new ones came and went. I went back to the doctor who said it couldn’t “still be Lyme because the doxy cured it.” I was sent to a Rheumatologist at Hopkins. It was the first time someone told me my complaints were in my head. I was still working full time, getting my master’s degree, and raising 2 young kids (one of which was recently diagnosed with Autism.), but my health continued to deteriorate. In 2009 my pain specialist asked me about Lyme and directed me to a ID doctor who was willing to push the boundaries of Lyme protocols and put me on IV ABX for) weeks and then extended it to 12. I felt better and went into remission for about a year. Then my entire world flipped upside down.
I was slipping away, I could feel it, my husband could feel it. We watched Under Our Skin and I just bawled. I saw myself and immediately realized if I couldn’t find a doctor to help me, I would die. I researched doctors online and as I was searching, the Jemsek Specialty Clinic was being set up in DC. I couldn’t believe it! My “everything happens for a reason” belief was a reality. God brought Dr. Jemsek from the Carolinas to me!
Little did I know the next part of my journey would nearly end my life, twice. During my first visit, I remember Dr. J looking at me and saying “I don’t know how you have made it this far. I don’t know how you are working. You are one of the sickest patients I have seen.” Finally, someone believed me! I wasn’t crazy. He also said that because of herxing and the protocol, I would become worse before I got better. I spent the next year of my life bedridden with family members taking care of me around the clock. I don’t remember most of that year, which is probably for the best. I went into respiratory arrest twice. The first time, my dog barked at my husband until he awoke, the second time my 2 children found me, both time saving my life. I do know that I am so much better now than I was at the beginning of all this.
Since 2011 I have been fighting my way back. I lost most of my short-term memory, diagnosed with dementia. (I’m now 41). I had severe tremors, encephalitis, severe anxiety and depression. I couldn’t drive. I was home bound. I couldn’t see my friends, my children’s plays, sports games, attend school parties. I couldn’t take care of my house, my husband, my kids. I couldn’t do 1 single thing after my diagnosis that I could before.
Things are much better now, but I am still suffering. The pain I endure (physical and mental) gets the best of me often, but I keep moving forward and I keep fighting because of the incredible people in my family. My husband took over every contribution I made to the family. My children are resilient and my family loves me.
What inspires you?
My husband is my biggest inspiration. He truly provides me with unconditional love. My children are strong, kind, passionate, and brave. They make me want to continue this fight. I am an advocate for Autism, but my kids are advocates for Lyme.
“Everything Happens for a Reason.”
“Walk a Mile in someone else’s shoes.”
“Go upward and onward.”