A SEAT FOR KASEY

I became symptomatic at 19 years old, and after many thorough tests, ultimately was diagnosed with anxiety disorder with underlining depression. I suffered from intense headaches, lethargy, and feeling like I was going to fall over when I’d walk. All my limbs felt weak and I found myself sleeping for hours during the day even after having a full night’s sleep. Every day was something new, vision disturbances, feeling foggy-brained, dizzy, and having air hunger. I would tell my mom, the only way to describe it was like the feeling you get after blowing lots of balloons. Every doctor we saw concluded with the same, anxiety and depression. 

My twenties were spent on a rollercoaster of symptoms on and off again, and things worsened as stress piled on. Winter months were the worst, and I was often weak and bedridden. I was diagnosed later with Ebstein-Barr virus which when activated under stress, caused me to feel all these symptoms. Then another doctor said I was hypoglycemic, and I had low oxygen levels and blood pressure. It was when I started dropping things easily, having issues grabbing a pen/pencil to write, forgetting easily, finding some of my memories were either minimal or gone, having difficulty reading and articulating what I was seeing, and having a hard time finding words when I was speaking, it became evident something was wrong. I thought I could possibly be suffering from a tumor or early dementia, so I sought a neurologist who requested an MRI of my brain, and found what she called a “scar”. She asked me repetitively if I had fallen, had a car accident, or hit my head and I would answer no to all her questions. She looked puzzled and even more puzzled when she discovered I had severely low B-12, suggesting not treating soon could cause brain damage. I thought we had the answer, so I went on B-12 injections and rechecked my blood levels until they were raised to a normal amount. Still, after that, I was having symptoms.

I started to bruise easily and my hair was falling out. I wasn’t convinced I had the answers but at this point, I was a mommy to two little boys and had to stay strong, for them. I went through a difficult divorce, which also threw me into another sick season. At this point, I sought out an infectious disease provider in my area to take over my medical care. Perhaps there was an immune deficiency issue I was having and he would find it for me. I told him all my symptoms and he promised to figure it out, and on February 14th, 2017, I got a call from his office. The nurse said “Everything was normal but you tested positive for Lyme disease, do you have a dog?” I responded no. She went on to ask if I had been in the woods, and recall a bite or a bullseye rash. I responded it was the dead of winter, obviously not. She told me not to worry, two weeks of doxycycline would take care of it. I was relieved to finally get a diagnosis and finally feel like I was not crazy. I read about Lyme before and I was pretty sure I asked to be tested for it, but the tests came back normal. Perhaps they missed it? But I would learn later about faulty lab testing.

I went through the treatment, hopeful it would get me feeling back to normal, but it didn’t. I would later return and ask him if he would be okay to continue my care under a Lyme Literate Medical Doctor (LLMD) and with his blessing, I continued my care to one in my area who then placed me on IV Rocephin for one month. I felt slightly better but all symptoms would slowly return and then I found myself on rounds of other antibiotics, antivirals, and finally herbal treatments. I am still searching for my cure, but I am pretty sure there is none. The only thing I can do is keep myself above water by being kinder to my body maintaining a healthy lifestyle and regularly detoxing. My mental health state is not the best, but medication and intense regular therapy keep me functioning at close to normal levels. I get regular flare-ups but the bad days don’t last very long. I have issues with my vision that makes it difficult to drive at highway speeds, so I find my way around that with my husband taking the wheel most days, or grabbing an Uber as often if I need to get somewhere that’s pretty far. I do find myself extremely sensitive at times and easily moved to tears or triggered to panic attacks. It’s embarrassing but my loved ones have learned to help me cope and medications do help a lot. I have at times felt like this was how I would die, suffocating in the hands of “Lyme brain”, but I don’t think death is my answer, not until I am in my late 80’s or 90’s at least! I am motivated to fight and survive for the sake of my family, friends, and myself. Although I always wanted to plan events, I realized that large-scale events were not feasible due to my battle with Lyme disease. However, I found joy in creating intimate events. 

I started my own intimate gatherings business called The Boho Barn, which offers dining or picnic setups in a surreal setting with unique furniture and décor. As someone who has experienced sensory issues related to Lyme disease, I wanted to create a calm atmosphere that appeals to those struggling with the same. In addition to creating beautiful memories for my clients, I also want to give back to the community by supporting the Global Lyme Alliance (GLA). I believe in the GLA's focus on mental health and providing resources to help those with Lyme disease cope with the mental distress that often comes with it.