When life gives you Lyme: my adventures

Peyton Gray

Peyton Gray

When life gives you Lyme: my adventures

About Me

          Hi! My name is Peyton and I have been living with Lyme disease for almost 5 years now. Throughout the years I have grown an appreciation for life and the world we live in. I wanted to tell my story and share my adventures to not only spread awareness of Lyme, but to hopefully inspire you all at least a little 💕

Life didn't give me lemons. Instead, it gave me Lyme. 


My Story

My Story

My Story

Wednesday, ACT tutoring. Thursday, Alzheimer’s association meeting. Friday, school talent show. Saturday, mall with friends. Sunday, college fair. Monday, boyfriend’s basketball game. Tuesday, sick at home. Wednesday, paralyzed. This is my story.

I was born and raised in Colorado; what I believe to be the most amazing place to live. Although little did I know that living in such a place would have such great disadvantages. When looking on a map you have the east, north, west, and south. They all border together as one making the title “The United States of America.” Now add one key word before map, “tick.” This now gives you “tick map” and a division in the country spreading beyond borders. What I found in my results were the likeliness of lyme disease in each state. There were 14 states labeled as “Lyme states.” Those being, Connecticut (1873 cases reported in 2015), Delaware (334), Maine (993), Maryland (1249), Massachusetts (2922), Minnesota (1174), New Hampshire (436), New Jersey (3932), New York (3252), Pennsylvania (7351), Rhode Island (564), Vermont (491), Virginia (1102), and Wisconsin, (1309). Colorado is not on this list. Colorado had 0 reported cases in 2015, 0 in 2014, 0 2013, 0 in 2012, 0 in 2011, 1 in 2010 (cdc.gov). I know four people, not including myself, living in Colorado, that have been diagnosed with Lyme Disease. Yet these cases go unreported. I am an 18 year-old girl with Lyme Disease, multiple co-infections, and black mold living in a “non-lyme state.” The first time I went to the hospital, my mom had asked about the possibility of Lyme. The doctors looked at me and said, “well this isn’t a Lyme state.” This became a common sentence I heard whenever Lyme was mentioned to a doctor, another was, “well we just don’t know much about that.” And just like that it was ignored. But, I am getting ahead of myself, let me begin in 2013.

My summers were filled with lots of traveling. I traveled to Nebraska, New Jersey, Russia, Turkey, Greece, Costa Rica, Mexico, and most importantly, Minnesota and Wisconsin. Minnesota and Wisconsin were a second home to me. I had spent every summer there since I was 1 month old. We would tube, swim, and run around the woods–not a care in the world. I had always been terrified of ticks. I am very claustrophobic and didn’t like the idea of something being attached to me. So every night, before I went to bed, I would check my bed to make sure there weren’t any ticks wanting to spend the night with me.

I had seen other girls at my camp get bit by ticks. They would get to go to the nurses office, pull them off, name them, and hang them on the fridge (this was really cool for all the other girls, but I was still terrified). One morning I woke up with two ticks in my bed. I freaked out. I was happy to know that they decided not to make a feast off of me, but I was scared to sleep the rest of the nights. Then one day after breakfast, my friend asked, “what is on your leg Peyton?” I looked down and saw the tiniest tick. It had been raining the days before and today was the first day in a while I had put on shorts. I had not one clue he was attached to me, how long he had been on me, or where he came from. That was the first tick bite of many others (well the first one I knew of.) That tick bite was a rude awakening for me to realize that ticks were in no way like mosquitoes. When mosquitoes bite, you can feel it. When ticks bite…you don’t feel a thing. This all happened in 2011 and after returning from Minnesota and Wisconsin nothing occurred. Next summer, I continued to travel to Minnesota and Wisconsin. Once again in a constant battle with ticks. But the most noticeable summer was 2013. I woke up one morning, back in Colorado, and I noticed a large rash on my right knee. The shape was a perfect circle inside another perfect circle. I immediately sent a picture of it to my mom and asked if I should be worried. My mom is from Minnesota so Lyme disease is no mystery to her. She asked if I had been bitten by a tick recently, I replied no, and we passed it off as a spider bite.

Summer of 2013 was a notable one. I had experienced my first heart-break, I was entering the halls of the upper school, and beginning to take interest in school for the first time. I was sitting in study hall practicing Spanish on my Ipad. A shiver took over my body and covered every inch of it with aches. I tried to shake it off thinking it was only from the excessive running we had done in volleyball the day prior. My head began to pound and my throat was burning. I asked my teacher if I could go get water and as I stood up I immediately had to sit back down in fear of passing out. I knew at this point I was probably getting the flu but I did not want to miss any school so I went through my day as normal. That day was the start to many more days of being sick. The same thing would happen each time, I thought I had the flu. I started to increasingly miss more and more school because I could no longer bare through the days of being sick. My family called my a “hypochondriac” that there was “no way you are sick again.”

Each time I would fall ill would be worse than the last. Eventually I was ending up in the doctor’s office looking for answers. Yet, answers is far from what I ever got. Not only was my family questioning my “Ferris Bueller’s Day Off” scandal, but soon, my doctors as well. Every time I went into the doctor’s office I was looking for an answer to prove to everyone that what I was feeling was real; that I wasn’t making these illnesses up. Every time I went into the doctor’s office I would get a throat culture. I would cross my fingers praying that this time the test would come back positive, but only to hear the same word, “negative” over and over again. Unfortunately though, “negative” was not the worst word said to me. It was actually a phrase, a phrase I heard throughout my freshman year in high school and a phrase I would continue to hear up until today. The doctors would simply look at me and say, “it is probably something viral, just go home and get some rest.” The sentence rolled off their tongue so smoothly it was as if they rehearsed specifically for me: because how could anyone be that sick all the time?

I began to manage the constant struggle of getting the “flu” and tried to avoid doctors offices as much as possible. In December 2014 I was faced with a new problem, however, that wouldn’t allow me to avoid doctors. I was sitting in chemistry class when suddenly my chest tightened up. I tried to slow my breath down but each breath I took felt like it was getting shorter and shorter. My heart rate was speeding up but my mind was convincing me it was slowing down. I thought I was having a heart attack. I ran to the bathroom and went into the biggest stall and sat on the floor balling. The bathroom floor had never felt more comforting. My hands, fragile, shook as I typed my moms phone number in, calling her in a panic. Hearing her voice was enough to calm me down… but the others days I was unable to. I learned that day, I had a panic attack. It enabled me from doing anything. I began to have “flashes” in my head of bad things happening. I could no longer go to a movie theater, walk through a parking lot, go on runs, be in the car alone, you name it I was afraid of it. I feared life to the point where I stopped living it. I began living my life in a strict routine in order to avoid bad things happening to me or my family. Wake up at 6:45, take the “P” necklace off, take the chocker necklace off, take the bracelet off, take the ring off, get in the shower, shampoo, condition, wrap hair in towel, count down 20 seconds, turn shower off, get out of shower, but “P” necklace on, put chocker necklace on, put bracelet on, put ring on, get dressed, hang towel up, blow dry hair, put makeup on, leave at 7:55 precisely. This was only one of many of my routines that I followed every single day, and I made myself believe that if I didn’t, my family or I would die. To me, life was that simple.

My family knew about my panic attacks but were not aware of the severity of my routines and “flashes.” It wasn’t until I became afraid of my mind that I decided to admit something wasn’t right. January of 2014 I fell asleep as usual. At around 1:00 in the morning I woke up, went to the bathroom, and came back into bed. Suddenly, a man appeared in my doorway and began walking towards me. I began screaming but I froze at the same time. My best friend was sleeping in the bed with me and woke up in panic because she heard me scream. Yet when she woke up the man was no longer there. I could no longer control my eyes at night-time. I was not dreaming, I was seeing things. I knew I had entered a new state of crazy. When I finally told someone, I could see the sheer look of panic on my mom’s face. The next morning I was brought into the Children’s Hospital to be evaluated for psychosis and schizophrenia. I kid you not when I say I was there for less than 15 minutes. Their response? “It looks like you have anxiety and OCD but you are far from psychotic.” My mom then asked, “what about the night hallucinations?” They looked me straight in the eye and said, “oh there’s nothing wrong with her, we can’t explain that.” Once again nothing was wrong with me in the eyes of the doctors. I looked like a fool, maybe I was just dreaming?

Fall of 2014 marks the season that my eyes began to see things during the day, not limited to only the night. My world began turning gray losing more and more colors at every blink of an eye. I was playing volleyball when suddenly I could no longer see the volleyball. I was in class and I could no longer see the board. I couldn’t tell the difference between orange and blue. These episodes would only last for around 20 minutes. I went to the doctors where they gave me an MRI of my brain. Guess what? Nothing was wrong with me. “It could be oculars that don’t turn into a migraine, but nothing is wrong with your brain.” I should have expected this answer. But still I held up hope for an answer to convince myself that I wasn’t making these things up. After a few months these problems slowly started to come to a halt. I was able to play volleyball without missing the ball, see the board in classrooms, and see different colors.

I decided to attend my boyfriends basketball game. I loved watching him play because he would play with all old men and run circles around them. Though I started becoming sweatier than the old men playing, my hands were clammy and my head was pounding. I didn’t think I had enough water that morning, so I went to find some water and tried to drink some. One sip made me feel sick. I returned to my seat acting as if everything were ok. I remember counting down the seconds of that game because I knew something was not right. I thought, “oh great, I am getting the flu again.” His parents asked me if I wanted to go get dinner–normally I would jump on that offer, but I knew I needed to go home. The ride home felt like 5 hours. I could not have gotten home faster. I was fine driving, I just had this pain in my head that I couldn’t run away from. I got home and immediately went to bed. It was around 2:00 am when I woke up from the worst pain I had ever experienced in my head. I face-timed my mom over 10 times until she picked up (she was in Wisconsin). I knew she couldn’t have done much but hearing her voice was enough to convince me that I wasn’t dying, because I thought I was. My appointment was made in the morning, which my dad took me to, I walked in, they ran tests, and guess what? “It is probably something viral, just go home and get some rest.” My heart was crushed when these words slipped out of the doctor’s mouth. I cried and cried until  tears were no longer coming out. I was in the worst pain of my life, yet nothing was wrong with me.

I increasingly got worse. I could no longer leave my bed, and when I did I would fall to the ground. My mom booked an early flight home. At this point of the story it is important to note that I don’t remember the events that occurred in the next 24 hours, just the stories that people have told me. My best friend checked on me because I was home alone waiting for my mom to get home. She found me laying on the floor unable to move, unable to speak, and unable to cry. She stayed with me until my mom came. Honestly, looking back at it, an ambulance should have been called right away.

I arrived at the doctor’s office at around 12:30 in the afternoon. I was rushed into the examination room. My temperature read 103.8 and rising. Granted  I had been there a day before, the doctors were stuck on what to do. I remember doctors were rushing in and out of the exam room. My eyes would close, open, close, and open each time a new doctor looking at me. My mom kept questioning why I wasn’t being sent to a hospital. At that point I don’t think anyone new what to do. The doctors gave me a shot of toradol (an intense Advil) in my hip in attempt to bring my fever down. The needle went in my hip and I felt the rush of cool liquid run through my body but I didn’t feel any pain as the needle was inserted. 20 minutes later and I felt a rush of hot air run up and down my body. At this point I became, what my mom likes to describe it as, “drunk.” I was talking nonsense, my eyes were blood shot, and I was laughing uncontrollably.  5 minutes later, I became paralyzed on the right side of my body. My right side of my tongue down to my foot were tingling. My doctor asked me to squeeze her hand. I remember telling my right hand to squeeze her hand, but every time I attempted to close my finger against her cold hands, I failed. The word “stroke” kept coming out of the doctor’s mouths, but I couldn’t comprehend the sentences they were forming.

I woke up the next morning unaware how I got into my bed. . I woke up still acting “drunk” as if someone had given me drugs the night before that were not wearing off. I couldn’t remember what I was saying, repeating myself like a 88 year old man with dementia. I would laugh at everything and everyone one. And the worst part, is I didn’t want to laugh, I wanted to cry, but only laugher came out. I was taken to the Children’s hospital. The amazing part was that after years of volunteering there, I finally got to see what the inside of the walls looked like; Trading my volunteer vest with IVs and a hospital gown. This hospital was nicer than what I imagined: they had xboxes and tvs in each room, the beds were surprisingly comfortable, and the nurses were very kind. There was a girl around my age in the room next to me. She was wearing a pink blouse, bright blue jeans and an oxygen mask. We both gave an approving nod as we made eye contact: knowing that we were the only ones to understand what we were going through. My doctor’s came in my room moments later to send me to the MRI screening. Due to prior events they had believed that I suffered from a stroke. The MRI was actually fun (unlike ones I have done in the past) because I got to watch “Happy Feet” as they took images of my brain. As you could expect, my images came back as showing that I did not experience a stroke. Instead, I was diagnosed with an ear infection and hemiplegic migraines. Which really just means migraines that will paralyze you for a short period of time. I was sent to a neurologist and was put on migraine medication.

It was 10 days later since the incident occurred and my fever had not dropped below 101 degrees. I was unable to leave my bed nor keep my fever down. I had been in and out of the hospital to receive fluids, and I had already lost 10 pounds. In the hospital the continued to run test that continued to come up as “negative.” This time was the first time my mom had brought up the words “Lyme disease” you could see the doctors eyes roll in the back of their heads as if they were waiting for this to be brought up. They gave me the speech that Colorado was not a Lyme state and they don’t hear of many cases here. Unfortunately at this point of time, we were unaware of the complications of Lyme disease versus the medical community. The doctors ran the test and of course it came back negative. Well, it is important to note in this point of the story that unlike all the other tests which were close to 100% accurate, the Lyme test is faulty. The first test I was given was the basic Lyme screening. 56% of these tests are false negatives. So, we demanded the Western Blot test witch is a more intense testing for Lyme. That too was negative. However, if you have chronic Lyme (which is unrecognized by the cdc) 52% of the tests are false negatives. My best way to describe this scenario is to look at the blood. When a tick bites you that is carrying the Lyme virus, the bacteria will enter the blood. If not caught in time, the bacteria (which look like cork screws) will then literally screw into your bones and tissues therefore leaving the bloodstream and therefore being unable to be detected in a BLOOD test. However, doctors do not view it that way and instead I was diagnosed with a “weird virus and I should just go home to get some sleep.”

The next day I arrived to the hospital in order to get a spinal tap. Hours before, I was at the doctors office trying to get medicine to bring my fever down. But due to my stiff joints and consistent fever they decided to give me a spinal tap to test for meningitis. This had been something both I and my family had been avoiding because we knew the pain it was going to cause. So when we got the news that a spinal tap was inevitable, we went to the mall to buy a blanket and a stuffed animal to try and cushion the experience I was about to face. I was laying in bed hooked up to all of the monitors when a very hairy doctor walked in. At that point my heart rate skyrocketed. The doctor gave me very bad vibes and was less than pleasing to be around. This was the first time I was sent to an “adult” hospital because my insurance was getting sick of sending me to the expensive Children’s hospital. The procedure was all set up and I could feel the needle stick through my skin and then into my spine as fluid slowly started to flow out. To say it was the most painful thing I had ever experienced would be an understatement.

It was time for me to be discharged from the hospital and as I attempted to straighten my spine as I stood up I collapsed in sheer pain. I knew at that point that leaving the hospital was not going to be an option and I had an immense amount of anger towards my doctors who told me this procedure didn’t hurt. Then the hairy doctor came in. Honestly I don’t think he even was a doctor but instead a trainee. I told him I couldn’t stand and he said, “well you must have had that before you came in because that is not from the spinal tap.” My mom almost flew across the table and hit him. I no longer had trust in doctors because I knew they no longer had trust in me. I knew at that point that I did not want to spend one more second in such a toxic hospital around a toxic, know-it-all doctor. I forced myself to walk out of the hospital each step collapsing more and more.

I continued to miss more days of school, got more needles poked in me, and had enough blood drawn to please a colony of mosquitoes. I longed to appreciate the finale pleasures of tea before bed and family movie night. Instead I began excepting my reality of keeping a bell next to my bed to ring my parents, having my steak cut up, and taking bubble baths rather than showers. I lost a sense of individualism and self motivation. Which was strange for me because my peers in their junior and senior years were doing just the opposite: finding themselves and maturing, preparing themselves to leave home. My goal no longer became getting into college but rather to feel good again.

My best friend was coming into town so I decided to throw a summer kick off party. I ordered a bouncy castle and set up a screen for an outdoor movie viewing. I have always loved party planning because it kept me busy. I had been feeling decent the past few months and had been returning to about one class a day. Slowly working my way back into reality. I had missed close to two months of school and I was ready for my journey to continue on. This party represented, not only the start of summer, but the start of a healthy Peyton. I was bouncing in the bouncy castle when suddenly I became light headed and achy again. I thought I had pushed myself too hard: ultimately jumping at the opportunity of potentially being healthy. While my guests sat around the fire watching “Toy Story” and enjoying popcorn and candy I decided to excuse myself and call it a night. I woke up the next morning unable to get out of bed. I was taken to the doctors and they re-run tests on me. But this time, something actually came up. The test showed that I was positive for mono. At this point the doctors were assuming that this had to be the answers to everything. I had mono the entire time! However, my mono test came back negative 3 weeks prior. The doctor’s answer to this was simple… “well it could have been a false negative because it hadn’t shown up in the blood yet.” So wait… the mono test can be a false negative but the Lyme test cannot? It was fantastic that I was finally getting answers, however mono was not the answer I was looking for. Unfortunately there is nothing you can do for mono. So what did they tell me? “Just go home and try to get some rest.”

I continued my summer as a routine. Get up, brush my teeth, attempt to eat a meal, and go back to bed. This was the entirety of my June. Except June marked the month that I had to take my first ACT test. As I was preparing for this test the week before, I got a call from the doctors saying that I needed to come in and run blood work. At this point in my sickness I felt like people were slowly breaking every bone in my body. My blood tests came back and my platelet count and white blood cell count was incredibly low. That day I was sent to the oncologist for leukemia. This was the Friday before the ACT. I had brought all of my flashcards and notebooks to the oncology office to prepare for the “test that would determine my future.” Going into a Child’s cancer doctor is an experience I hope no one will have to ever go through. There were kids in there as young as 2 years old struggling just as much as I was. The difference was that I had 15 years on these children, yet they seemed to be stronger than I was. The doctors office lined with photos of children, mostly bald, with their families. On the right side of the door was a coat hanger filled with knitted hats made by a church. It’s amazing how happy they attempted to make the room despite so much sadness running through each others minds. Dr. Ball was the doctor who saw me. Unlike the last doctor I had, he was much more welcoming. He laughed at me for my color coated flash cards, I told him it was a good distraction for me. After the small talk and explaining my story, my mom said, “Peyton is worried she is going to lose her hair.” I was in disbelief because I though that was an insensitive thing to bring up, but not going to lie a conversation I did have with my mom prior to the appointment. It was sad though. There were children in there facing much worse than most people could ever imagine and I was concerned about losing my hair? Luckily for me though he told me that I for sure did not have leukemia and this was not cancer. Weirdly I left the doctor’s office disappointed. Of course I didn’t want to be told I had cancer, but I wanted to have an answer. Yet still, I continued to hope for something that I may never get.

The next few weeks I was passed around from specialist to specialist each telling me that nothing was wrong with me. Until I met the cardiologist. The cardiologist was a man who I grew to hate within seconds he walked through the exam door. After he ran test after test he said that my head wasn’t properly communicating with my heart which was ultimately causing me to pass out. Then this doctor, who admitted to not reading up on my case so he had no prior knowledge to why I was visiting, said the words to me, “so why do you think you have lost so much weight?” I looked at him and answered with utter disbelief, “well doctor I have been bed rested for 3 months now and eat only one meal a day because that is all my body can handle.” His response? “hmmm… well I think you have an eating disorder. I think that you are making these symptoms up in your head in order to divert yourself from the real underlying problem.” I held back tears and anger by shoving my fingernails into my palms. I made one glance at my mom and she too questioned me. I think that’s what hurt the most. Doctors had been labeling me as a liar for 4 years now but never my mom. I knew getting frustrated would only make me look worse. But I couldn’t hold that frustration back. I knew I could no longer prove my aches, my headaches, or my bone crushing pain to anyone. I had given up.

Suddenly, I took a turn for the better. Despite being weak from all of the weight I lost and a little fatigue, July was the best month I had had in 4 months. I traveled to Minnesota and Wisconsin to visit with family and friends. In August, I went to New Jersey with my best friend friend and her family. I had gone the year prior and it was the most liberating trip I had experienced. No one new my name or my history: we could be whoever we wanted to be when we entered Beach Haven, New Jersey. This year, however, was different. We were now known as the “Colorado girls” and the people who we were last year is the people we were forced to be this year because people knew us now. This didn’t stop us from a summer of a life time, though. Three days into the trip after we had met with all the locals again, went to beach for 13 hours in a day, and visited all our favorite eating place I started to feel shaky. I figured (well hoped) that is was due to the lack of water I had been drinking and the hours spent in the sun. During this time, I developed another bullseye rash on my thigh that grew more as the days past. However, I increasingly got worse. I woke up in the middle of the night sick again with everything I had been experiencing prior. My temperature was back to 102.3 and I was miserable. My family got me a flight home immediately. The drive to the airport is about 2 hours. I fell asleep hoping that I would wake up and this would all be a dream. When I arrived to the airport I was five hours early; I am not sure why the family dropped me off so early, but I figured it was because they wanted to get rid of me. People were glaring at me as I walked through the airport. I am assuming they thought I was a zombie due to the grayness of my skin and the limp in my step. I went to my gate, laid down on the floor, pulled my blanket out, and fell asleep. I kept waking up to knew planes boarding; “we are now boarding the flight to Arizona” then it was to Montreal, then Florida. It took forever for them to say the word “Colorado.” People would occasionally walk by me to make sure I was ok. After I exchanged a smile with them they would exchange a concerning nod, but continue on with their lives. Finally they called my flight so I went up to board. I stood in that line for 45 minutes waiting to board because they had an “issue” in jetway. I couldn’t stand up for more than 1 minute without passing out, let alone 45. I would occasionally bend down and pretend to tie my shoe or look in my bag just so I didn’t have to be standing anymore. I knew I needed to pretend I wasn’t sick so they wouldn’t kick me off the plane. We were finally able to board the plane so I set up everything in first class (that my parents graciously got me so I would have more room to sleep) and slept runway to runway. Coming back home from a trip is always the best feeling ever, but this time, that feeling was intensified. I had been traveling for about 10 hours that day with a 102 fever.

I returned back to the doctor’s to run blood work and re-run my mono test. The mono test came back negative so that was no longer an answer the doctors could give me. As they were in the process of telling me, “it’s probably just a virus, just go home and get some rest” I rudely interrupted them because I finally have proof that the doctors could see. This proof was the big bullseye rash I had on my left thigh. When I showed my primary doctor, her jaw dropped. She was amazed that after all this time I finally have something that could prove an illness. The important thing to know it that a bullseye rash most of the time indicates Lyme disease. So, I was sent to the infectious disease doctor.

Now I have met some unpleasant doctors, but this woman was both unpleasant and uneducated. I showed her the rash and she says, “Yeah that is definitely an indication of Lyme disease, but I still don’t think you have it chronically. I will still put you on antibiotics though just to make you guys feel better.” She told me that I probably got bit by a tick within the three days I was in New Jersey, which is then what caused the rash to develop, then causing me to be sick. She also said that Lyme Disease has no correlation with everything else that has happened to me the past few months and I am either extremely unlucky or, “its all in my head.”  This was the first time I ever argued a doctor. Yet still because she has an MD and I am just a 17 year old, she will always be right. And that’s the way it is with doctors.

She sent me to a child’s therapist that deals with kids with chronic illnesses; well that’s what they told me he is. Really, he deals with kids who make up symptoms in their heads and harm their bodies. I got their and immediately was told that I have an eating disorder along with high anxiety and depression. It is important to know that my anxiety had been managed and I haven’t been depressed once in my entire life. But I agreed to take tests to prove that I was none of these things. Of course, these tests came back negative: meaning I did not have an eating disorder, high anxiety, or depression. The difference between this doctor and the others was he actually believed that I was feeling real pain, the only thing is, he though it was self-inflicting. I left the doctor’s that day believing him. I finally succumbed to the idea that I was giving myself bone crushing pain, fevers, and these illnesses. The sad part is, even when the doctors believed it was just in my head they still didn’t do anything to help. I mean if I am unstable enough to bed rest myself for 3 months you think they would seek help for me? At this point of my journey I had lost trust in my doctors, my family, and now myself. There was one person who saved me, and that was my mom. Despite still questioning the eating disorder, she never stopped pushing Lyme.

The infectious doctor did diagnose with me acute Lyme disease, and that was a good enough diagnoses for me because finally I was getting answers. Though she was cynical about treating me, she did give a 21 day course of antibiotics. During those 21 days, the antibiotics made me worse. Because the antibiotics made me worse, I believed I didn’t truly have lyme.

One day something changed. I wanted to understand lyme so, I Googled “living with Lyme.” I was shocked at how many articles were generated. I began reading each blog and discovered a pattern in the stories; they were all like mine. I learned that this is a hidden epidemic, that doctors all around the world have misdiagnosed Lyme, and that patients have been untreated for as long as ten years. The patients that were untreated were becoming paralyzed, blind, and worse dead. I was a part of something much bigger than I had thought. I realized for the first time in my life that I could be a part of a change. Every single one of these people were told they have mental illness and that it is all in their heads but they were able to come out of that and believe that what they have is real. These people’s stories completely changed my attitude, so I thought, “Why couldn’t I do that for others?

After many other doctors calling me an “attention seeker,” I finally sought help from other people who have experienced the same issues. I called Maggie Wright, a girl from my school who too suffered from Lyme, she and her mom gave me a list of doctors to go and see. So day by day I was on the phone with different doctors. These doctors are what people call “Lyme literate” doctors, because the are educated on Lyme disease unlike many doctors within the medical community. There are very few of these doctors so each of these appointments were 6 months out. But I patiently waited knowing that finding the right doctor meant getting healthy.

I finally found the right doctor who listened to my story in great detail. Instead of looking at each incidence individually, he looked at my life events as a bigger picture. I am living with Lyme disease with multiple co-infections and mold toxicity. I am in the process of getting treatment in hope of starting my freshman year in college like I have imagined it since I was 8 years old.

My reality now is a life I never imagined for myself. I was faced with a decision: I could either drown in my illness or I could go out and live. I, at one point, did not believe that one could succeed after failure. However, once I learned that chronic Lyme and doctor’s opinions were out of my control, I was able to take control of my attitude. I am not defined by Lyme, but rather empowered by it. I started to have trust in myself again and how I was feeling. When a doctor looked at me and said, “it is probably a virus, just go home and get some rest.” I would politely nod and not let it affect me like it had in the past. When a doctor said that, “all of this is in your head” I would respond, “I know how I feel, and what I am feeling is real.” And then best part about this, I am confident in what I was saying. In reality, there are people who believe me, and those are the people that matter. Unfortunately life didn’t give me lemons, it gave me Lyme, and I am taking that and thriving.