“Hello my name is Aubrey and I have Lyme disease. I also have Bartonella, Babesia, dysautonomia, postural orthostatic tachycardia and neuropathy among other health issues. Most of my illnesses stem from Late Stage Neurological Lyme Disease. Because the Lyme Disease went so long before getting diagnosed it caused irreparable damage. These illnesses have completely changed my life. I went from riding motorbikes through the Kenyan jungle while working for an NGO, to being unable to get out of bed.
I went from getting accepted to Yale for graduate school to struggling to speak and being unable to read and write. Doctors told me there was nothing wrong with me. I went over two years before getting a diagnosis and I only received one because I sought out a Lyme literate doctor after watching the documentary ‘Under Our Skin.’ I hope that by sharing my story I could prevent someone else from having to go so long without being diagnosed and bring awareness to this disease.
Over the years I told 7 different doctors I thought I had Lyme disease and they all told me I didn’t because my ELISA test came back negative. I didn’t know this at the time but this blood test is highly inaccurate. My illness started when I began experiencing extreme fatigue and joint pain, I went to the doctors several times and they said nothing was wrong so I just tried to manage. However, I was in my final year as an undergraduate while working 20 hours a week and it was very difficult to get through daily activities. Then I started having partial seizures. Shortly after I started having extreme stomach pain. The doctors thought I was just trying to get pain medicine and refused to take my crushing pain seriously. One of these doctors came to the conclusion that I had endometriosis and performed a laparoscopic surgery but it came back negative.
I asked the doctor to test me for Lyme disease and told her my dog had had it and one of our neighbors. They said I had been tested with the ELISA the previous year so I couldn’t have it. They asked if I was depressed and insinuated all of my symptoms were in my head. When I kept asking doctors about Lyme they made me feel crazy, one doctor even told me ‘Avril Lavigne gets Lyme Disease and all of a sudden everyone thinks they have it.’ I continued to get worse, I had trouble breathing, I got sick all the time, I had terrible joint pain and fatigue and couldn’t concentrate. I graduated college but had to quit my job because of the symptoms. I went to see several more specialists but none of them could tell me what was wrong with me.
With no answer to my health problems, my then boyfriend (now husband) and I had to make our next big life decision of where to go for our graduate studies. Weighing opportunities such as Yale, Duke, Stanford, or Berkeley, we decided to move down to Austin, and attend The University of Texas as it had excellent programs for both of us and we both received funding.
A few weeks before I started my first semester of graduate school I started having partial seizures again. They were bad, really bad. I started having clusters of them (when I had one I had several, usually they continued until I went to bed). I would be confused and scared (this never happened before). I wasn’t able to move or speak but was still conscious, it felt like I was dying. I started experiencing new symptoms; I could no longer concentrate. I would have a conversation with someone and halfway through I couldn’t remember what it was about. This is where the joint pain became unbearable. I could barely walk I was so tired and in pain. I was easily out of breath after going up a few stairs. I woke up every morning with the worst headache of my life and my neck would be so painful I felt like I couldn’t move my head. Each time I thought this can’t get any worse, and it did. I would have uncontrolled twitching and at times be barely able to move one of my arms. I still went to classes but by the time the weekend came I felt like I had the flu every weekend and was fully bedridden. The joint pain was so bad, after I got back from school I would cry and just lay there in extreme pain. My memory problems worsened. Everyday I tried to remember what I wore the previous day, many times I couldn’t. On Monday people would ask me what I did the during the weekend and I couldn’t remember. I no longer contributed in class, when I got called on I couldn’t come up with the words my mind was thinking. I could read a whole book and not remember what it was about. Then eventually I stopped being able to read. At this point I had to take medical leave from school. I felt like it couldn’t get worse but it always did. I got dizzy when I stood up, and would faint. My heart was racing all the time. My heart rate was almost always over 100 and had spiked to over 200. I went to the University Health Services at UT, the doctor told me there was nothing wrong with me. I began to question myself. Maybe it was all in my head. I began to think I was crazy. I went to a different doctor and they did more tests. An autoimmune test came back positive. My first thought was finally, there is a reason, something to explain what I was feeling. I later found out that Lyme disease can suppress your immune system so much you can false test positive for autoimmune conditions. The rheumatologist diagnosed me with fibromyalgia. I knew fibromyalgia was not the answer because it only explained the pain and fatigue not any of my other symptoms. Eventually I watched the documentary ‘Under Our Skin’ about Lyme disease. I cried the whole way through because it was so accurate to my experience. I had every single symptom, things that I didn’t even realize were symptoms like ringing in my ears all the time, and poor balance (I always had several bruises on me). I had my dad watch ‘Under Our Skin’ and he thought I had it too. I went to the Lyme Disease Association website and got a list of Lyme doctors in Texas. There was only one. It was five hours away and cost $600 for the first appointment. My dad told me to make the appointment.
After further testing I was diagnosed with Lyme Disease, bartonella and babesia (the last two are tick borne co-infections that frequently go along with Lyme Disease). He warned me that the treatment is not going to be easy and it would get worse before it got better as the treatment causes a die off reaction. I got a PICC (peripherally inserted central catheter) line placed in my arm and started doing IV treatment. I had to do IV meds because the lyme bacteria had entered my brain and the oral medication can’t cross the blood brain barrier.
Lyme Disease treatment was very rough but it significantly improved many of my symptoms. I could read and write again. My cognitive function and memory increased greatly. However, I was still having a lot of health problems and we sought out more specialists
I was diagnosed with dysautonomia which is dysfunction of your autonomic system (think of all the things your body does autonomically). This caused Postural Orthostatic Tachycardia Syndrome which leads to skyrocketing heart rate, really low blood pressure and fainting. Dysautonomia also affected my ability to eat along with a condition called median arcuate ligament syndrome which I needed surgery to correct. I had to get a feeding tube. I was also diagnosed with neuropathy which causes numbness and extreme pain in my legs. Then during testing to figure out my stomach problems they found neuroendocrine cancer in my pancreas. This lead to me getting admitted to the hospital on Christmas stay and staying for three weeks. I’ve had surgery to remove the tumors and we are hoping it stays at bay!
My life has changed so much over the past few years. While life has been extremely difficult I have learned so much from this disease. I am profoundly grateful for every step I make in my recovery. While a debilitating illness like this could cause relationship strain it has made mine and my husband’s bond even stronger. He is the best partner, caretaker, best friend I could ask for. I struggle with my health everyday but I also am able to find happiness in everyday. This journey has been difficult but I have grown so much from it and I am very thankful for the person I have become. I hope by speaking out I am able to raise awareness for Lyme Disease and other invisible illnesses and shorten how long it takes people to get diagnosed.”
This story was submitted to Love What Matters by Audrey Winkle of Austin, Texas. Be sure to subscribe to our free email newsletter for our best stories.
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