My Lyme Disease Story

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 bulls-eye 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 7 or 8 years old when my mom pulled one off of 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 have ADHD 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. 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.

Up until 2009, 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, until 2010.

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(My sister, myself, and a close friend having a good time in Austin in the summer of 2010)

In June of that year, I caught a mysterious and terrible throat infection, complete with a high fever, chills, aura, and extreme fatigue. I had never been this sick in my life prior to this time, and I was on antibiotics for almost 4 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, and GPs, and 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.

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(My sister and I in London, summer of 2011)

In the fall of 2011, I started to really go down hill fast. I was suddenly stricken with an agonizingly painful case of what was clinically diagnosed as TMJ. After several weeks of NSAIDS 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 MRI’s, and two CTScans, 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 patient’s are treated.

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(One of my closest friends and I on her wedding day in Sept. 2011, this was the last significant social occasion that I was able to attend. To this day, I am so thankful that I was well enough for it. Photo Cred: Shaun Menary)

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 apt for days at a time. I ordered takeout for all my meals (I wasn’t eating much anyway) and binged 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).

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(Sporting my #lipstickwarpaint for chronic illness awareness)

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 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 3 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.

This blog picks up where this story leaves off. I invite you to read all about my journey here, and welcome questions or inquiries.

Xx,
Kayla

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