Harris County, TX
Infected: Unknown, may have passed through the placenta at birth
Diagnosed: August 2009
Current health: “One step forward, two steps back…”
I just laughed off all my strange symptoms … It never occurred to me that something else could be going on. –Kayla D.
Kayla is a young Texas woman who never suspected the myriad of challenging symptoms she was experiencing might all be the result of Lyme disease, though her mother and sister also suffer with Lyme disease.. Here, she shares her more than decade-long road to diagnosis. The story first appeared on Suffering the Silence* and Kayla has since started her own blog, Joy Rises, for the Lyme community and as a platform to share her learning along her own path.
“It’s hard to know where to start my story because I don’t know when it began. I never got the tell tale sign of an ugly bullseye rash. I don’t recall ever coming home from a camping trip and feeling flu-like or ill shortly after. I grew up in Texas where it is widely, though inaccurately, thought that Lyme disease does not exist.
“There is only one time that I recall a tick bite. I was around seven or eight years old when my mom pulled one a tick off the crown of my head. If this tick caused the tell-tale bullseye rash, I wouldn’t have seen it because it would have been under a mass of untamed little girl hair. If I got the flu shortly after, I wouldn’t have correlated it to the tick bite. Lyme disease was the farthest thing from my or my family’s mind at the time. Maybe this bite was the bite that got me, maybe it wasn’t. There’s no way of knowing.
“What I do know is that since I was very young, I’ve experienced many different health oddities: I had severe colic as an infant. I got strep throat numerous times when I was in elementary school. I have always had ADHD (Attention Deficit Hyperactivity Disorder) and a bit of anxiety. I remember having awful heartburn as a first grader. I have had headaches for as long as I can remember. Digestive issues started when I was in middle school. In high school, I was prone to bronchitis. If there was a stomach bug going around, I was guaranteed to catch it. When I was 19, I had a severe and anaphylactic type outbreak of hives that required months and months of steroids to control (turns out I had become allergic to peanuts and pecans). In college, I developed terrible digestive problems and after much testing was diagnosed with IBS (irritable bowel syndrome). After college I moved to NYC and a few years later suddenly began having panic attacks. My allergies began acting up again. I was tired all of the time. I began having terrible PMS and painful periods, seemingly out of nowhere.
“I never thought too much about my health history and the odd things that seemed to affect me and no one else. I just thought I was weird and laughed off all of my strange symptoms. It didn’t occur to me that something more could be going on.
“In June of 2010, I caught a mysterious and terrible throat infection, complete with a high fever, chills, aura, and extreme fatigue. I had never been this sick and I was on antibiotics for almost four weeks. By the time I had completed my last course of antibiotics, I felt considerably better but by no means was I back to normal. My sore throat lingered, the fatigue was strong, and I generally felt dizzy, anxious, and altogether unwell. I knew that something wasn’t right and pursued doctor after doctor. I saw allergists, ENTs (ear, nose, and throat specialists), and GPs (general practitioners). Although a few of them suspected that I had an autoimmune disease, my blood tests always came back negative.
“Eventually I gave up pursuing more doctors and learned to live with my symptoms and new limitations because I was too tired to do anything else. Slowly, my body forced me to give up things that I had previously loved doing — I stopped working out and going out with friends on weeknights and even some weekends, trading them for rest, crappy television, and my couch.
“In the fall of 2011, I started to really go downhill fast. I was suddenly stricken with an agonizingly painful case of what was clinically diagnosed as TMJ (Temporomandibular Joint Disorder). After several weeks of NSAIDS (nonsteroidal anti-inflammatory drugs) and massage, I sought a chiropractor and physical therapist. They both agreed that I had some major structural issues that needed to be worked out. As I continued having sessions, I began getting more and more symptoms.
“It wasn’t long until I was admitted to the hospital for testing due to symptoms of facial numbness, tingling, pain, fatigue, dizziness, light sensitivity, nausea, severe neck pain, and random nerve pain. After lots of testing, two different MRIs, and two CT scans, I was diagnosed with basilar artery migraines and discharged. I remember a nurse calling a few days later to ask how I had been doing post discharge, and when I told her that I was still suffering with all of the same symptoms and a greater level of exhaustion, she seemed confused and didn’t offer much help. Looking back, this is textbook for most how Lyme patients are treated.
“I spent the next 6 months running all over NYC to see specialist after specialist. I knew something was wrong, but out of the 16 doctors I saw during that time frame, not one of them could find so much as a hormone out of place. I was diagnosed with Fibromyalgia and sent on my way with a tidy bottle of pills to help with the pain.
“Unfortunately, my symptoms only continued to escalate until eventually I couldn’t work, or even get out of bed. My legs had become so painful that I couldn’t make it up and down the stairs of my building, so I was essentially trapped in my studio apartment for days at a time. I ordered takeout for all my meals (I wasn’t eating much anyway) and binged on Netflix all day long, while curled up in a fetal position, trying to manage the nausea that had become so bad. By this time, it was clear that I wasn’t going back to work any time soon, and without an income and in need of a caregiver (i.e., mom), I flew home to Texas where I have remained ever since (June 2012).
“Once I got to Texas. I started seeing a new GP who came with a great reference. He was sure that I had Chronic Fatigue Syndrome (CFS) and started me on Lyrica and a beta-blocker immediately. Neither helped, and I soon became much worse. I was so light and sound sensitive that I stayed in a dark bedroom for two weeks straight. I couldn’t watch TV or even look at my phone to read text messages at times because the dizziness and nausea were so bad. I lay sick, nauseous, exhausted, and barely alive for weeks.
“Eventually, after insistence from a friend, I tested positive to the Western Blot test, and it was confirmed that I had Lyme disease. Since then, I have seen three different Lyme doctors over the course of two years and have had most success with natural treatments, as I had several bad reactions to antibiotics and my body has just been to fragile to handle them.
“It has been a long road. I invite you to follow my journey on my blog, joyrises.wordpress.com, where I share healing insights, recipes, and some specifics about my journey this far. I created this blog because I wanted to form a safe place to share my experiences, connect with others, and advocate for Lyme patients.”
*Excerpts from Lyme stories have been shared between Bay Area Lyme Foundation and Suffering the Silence as part of an ongoing partnership between the organizations and with the permission of the authors.