Welcome! I decided to start this blog only recently, after being interviewed for a story on my health journey with Lyme, co-infections, autoimmune diseases, chronic fatigue syndrome and Miyamotoi. Once the article was released, I was overwhelmed by the number of people who reached out to me for advice, help, or simply someone to talk to about the devastating effects of Lyme. The number of spoonies (chronic lyme sufferers) who craved some sort of human empathy and guidance was astonishing, but unsurprising.
While Lyme and co-infections are beginning to get more attention, they are still wildly misunderstood and diminished in their severity. Being incurably sick is bad, but having doctors, peers, or family not believe in your pain is far, far worse. I am hoping that this site will help those of us who are suffering know that we are not alone in this journey, or maybe those who are watching a loved one suffer to get a glimpse into the reality of Lyme and other debilitating diseases to try to better understand what lies beneath the surface.
The loneliest moment in someone’s life is when they are watching their whole world fall apart, and all they can do is stare blankly.F. Scott Fitzgerald
I was diagnosed with Multiple Systemic Infectious Disease Syndrome- basically an umbrella term for Lyme combined with a bunch of other co-infections and diseases- in October of 2017. Ever since, I have both lived and studied the true reality of Lyme disease, one that is so often misrepresented and undervalued. It feels like I have tried every treatment possible, from hyperbaric oxygen chamber to ultra-violet light IV to 35 supplements every morning, and I hope that at least some of my experiences can help guide others.
Throughout the course of this blog, I will dive deeper into some of the treatment options for Lyme/Miyamotoi that have worked for me personally, including diet and supplements, as well as provide a true look into what life with a debilitating chronic illness is truly like. For me, one of the worst parts about this journey is its invisibility. Nothing is more painful than watching the world fall apart around you and having to do it alone.
Jordan Younger, a blogger with chronic Lyme, wrote about the invisibility of this illness in a way that has always stuck with me that I want to end this post with. She perfectly epitomizes the invisibility that I hope to shatter in this blog. “A few things I wish people knew about chronic Lyme are that… you may see a photo of us smiling and out and about.. but that may have been the only house or our day (or week) that we had enough energy to get out of bed. You may see a happy, healthy human on the outside, but on the inside many of us our falling apart and our bodies are in extreme pain and constant fatigue. You may think we are a little scatterbrained and hard to pin down for commitments, but that’s because we are fighting to stay on top of our lives while our brains are infected with Lyme and we have no idea how well feel on any given day. You may see us put on a brave face for our family and friends, but inside we desperately wish more people knew our reality and simply checked in to ask us if we’re okay.”