Unexpected Motivation: With Chronic Lyme Disease Wrapped Tightly Around Her Entire World, 16-Year-Old Mikayla Navigates This Daunting Diagnoses With Both Determination and Patience
When you feel suffocated by your days, unable to roll out of bed, turn on the lights, and take a shower without curling up to rest. When everything familiar, comforting, and said to be part of "the way of things" manages to slip between your fingers, no matter how tight the grip, making sense of what's left feels near to impossible.
When you're Mikayla Vallati,
A courageous, persistent, and kind-driven 16-year-old, unable to attend public school, cultivate friendships, and partake in activities that should leave you feeling supported and inspired, is instead, faced with an unforgiving and daunting reality.
One where a tick-borne illness forcibly pushes and pulls you, without warning or clues as to how you're going to make sense of or work through it all, into a world very unlike your own.
At what what feels like the lowest of lows, Mikayla finds motivation where she otherwise wouldn't...
Let's start here, shall we?
While most kids my age have days full of plans and activities like sports and social gatherings, I have days full of fatigue and headaches and doctors visits. I've been attending public school my whole life, until recently, when my health got to a point where I could not get out of bed. So I had to transfer to school online.
While I do get some freedom, I also have almost nothing left that resembles a teenage life, which hasn't been easy.
I see people my age living life to their fullest and it pains me to know that some days I can't make it out the door. That's not a possible life for me right now. It's hard to think about the future because it's so unknown. Academically, I have been successful through this time of struggle, which is something I am very thankful for. However, it takes much energy, drains me out for the day, and leaves me with nothing left.
I can't play sports. I can't be in musicals.
My life was flipped upside down by Lyme.
This is my story...
The first time I heard about Lyme disease I never knew it would have such an impact on my life. That in the middle of my high school career, I would be forced to change all my plans and become cyber-schooled because the doctors couldn't write me any more school notes and I physically couldn't get out of bed. I never knew it would force me to stay in bed all day in pain and come home from doctors visits bawling because they couldn't figure out what was wrong with me.
I never knew it would cause me to lose my vision day by day and become an emotional wreck.
And most of all, I never knew it would strip me of all motivation and happiness I had in me. Lyme disease is an evil thing. But when many people hear that name all they think of is, "you get bit by a tick, get a bullseye rash, then go on to use antibiotics for a couple of weeks and you will soon, be living a healthy life."
But that is not the case. It has impacted my life in so many ways, and not only in bringing me down but also the people I love; I had an amazing childhood and I was never low on energy, until, in 4th grade, I started to become extremely sick. My mom quickly realized I wasn't okay so we went to an infectious disease doctor. At first, they thought it was appendicitis. Later they tested me for Mononucleosis and the test came back positive. We had told the doctor that I had been scratched by our outdoor cat and I had gotten bitten by a spider and I have been exposed to ticks and we were wondering if it could have been Lyme disease.
Which the doctor insisted was impossible because I had no rash and Lyme disease is just a "big joke". That's the first time the doctors were wrong.
I was sick for months and missed a lot of school. I went back to being my normal self in some ways. But ever since I got sick that year I have never been the same. I became overly tired and had very low amounts of energy for a 10 year old girl getting more then 12-14 hours of sleep a day. However, I did not want to spend my life going to doctors and I just wanted to be a kid. So that's what I did; It was not easy, being diagnosed with anxiety at age 10 and going to a counselor and taking medication just to keep myself from being scared of almost anything, however, it was kept at a minimum and never really effected me to the point where I was unable to live a normal life.
As I continued to grow up, I started to become that girl in school that was never there. I would get sick more than most kids did and some days I would just need to stay home and sleep. I played field hockey from 6th grade into 9th grade and during that time I "hurt" my ankle about 3 times.
In 6th grade I went back to the doctor because I was having awful ankle pain, however they found no fracture and told me it was just bruised. Shortly after that doctors visit, both of my ankles swelled up and my knees began to as well. We went back to the doctor who didn't have much of an answer for me. During my 9th grade season, I hurt my ankle again, this time they found a fracture, and my whole body began to swell. We went back to the doctor, AGAIN. I was tested for Lupus, Mononucleosis and JRA.
So I let my ankle heal, and decided I was done playing field hockey because I missed out on a whole season. From then on my health went down hill.
In 10th grade I continued my streak of missing school due to a lot of sick days and went to the doctors normally to see if they could figure out why. I began to think that feeling weak and tired all the time was normal and I pushed through. That was until I started to loose my vision. I realized one day in class that I couldn't read the board so I told my mom and we got glasses right away. Life went on without any major signals of a chronic illness until I began to develop painful headaches. During this year, my hair started breaking off. It happened very fast and before I knew it, it looked like I had tried to give myself bangs and layers, when I had never even touched my hair with scissors in my life. I thought it was just damaged and I never really thought anything of it.
My mom and I decided we should cut it above my shoulders so it could grow back healthy. It started to grow back, but very slowly. Growing up my hair grew rapidly, but now it took months just to see a slight change. It was a very hard thing for me to deal with, and lowered my self confidence greatly. The headaches I got became worse and I began to feel nauseous daily. I would come home from school and just pass out, and not wake up until the next morning. It was hard to stay on top of school work considering I saved myself no time for homework. But I felt as though I didn't have a choice, I needed sleep.
A Day in my Life
So I normally wake up whenever I want, because I have no set time to be in school and sleeping in has helped to give me more energy. However, I usually wake up about 4 times throughout the night and by the 4th time I decide to get up which is probably around 10-11am.
I then force myself to eat some sort of healthy breakfast and take my antibiotics. Most days I don't have energy to get ready the way I used to (doing my makeup and hair) which is something that I love. So I will just shower and get dressed.
Then I take a break and sit down for a while, yes I get tired that easily. Some days I start my schoolwork early while other days I wait. It just depends on the work I have to accomplish. I try to go places and get out of the house, which I have been getting better at but I am usually in some sort of pain, wether it's a stomach ace or a headache or even nausea and dizziness.
Most days I nap in the afternoon after lunch and take more antibiotics. For the rest of the night I'm usually in bed or taking it slow and then I will take a soothing bath, take my vitamins and other medicines and hit the sack. The day I just described to you is me on a good day.
If I were to tell you what life was like for me on a bad day it would be pretty boring. It usually consists of hours of sleep and about 3 showers a day, due to the heat flashes and sweats that I wake up to. It also consists of me forcing myself to eat, as I get very bad nausea and feel like I can't keep anything down.
I am usually pretty helpless when I am sick and have to be taken care of because of the level of weakness that I reach. It usually hurts to walk and move so bad that I try to move as little as possible. And being on my phone or watching tv isn't an option most days either because my headaches usually cause my eyes to become extremely sensitive to light.
I really can't do much when I catch a cold or a virus, and some days my Lyme just acts up.
Back to the story...
I began to experience other symptoms like brain fog and my anxiety was starting to worsen. I also discovered a rash that looked like stretch marks but they were bright red and itchy. I begin to eat less and just feel "blah" all the time.
Around this time I started dating my boyfriend who actually has lymes disease. I quickly became close to his family and they started to question if I had Lyme disease because of all of the symptoms I was experiencing. His mother, who has Lyme herself, and is on the ILADS board, recommended we get it checked out. I thought about it but since my doctors kept on telling me that it wasn't anything like that I believed them. Until my vision got worse and the glasses I had no longer worked, at all. I started having more common Lyme symptoms and I was convinced. I then remembered the rash I had and showed my mom. We found that it was a perfect match to a Bartonella rash (A lyme co-infection). We went back to my doctor as I was continuing to feel sick and started to become less motivated.
My mom requested that I would have a blood test taken for Lyme just to be sure. The doctors didn't want to do it because there was no "real reason" but they did it anyway. And the western blot came back negative. Luckily my boyfriend and his family knew that most tests come up negative even if you do have Lyme disease because the test they use is 40 years old. Living in Pennsylvania put a big burden on this whole situation and made everything so much more of a challenge. My mom tried to talk to an infectious disease doctor about Lyme disease. They would just laugh at her, dismissively waving her off. So we were stuck.
We decided to wait and see if we could get an appointment somewhere to see someone who knew about Lyme disease. I continued to feel sick and at the beginning of my junior year I felt an overwhelming amount of anxiety. School used to be something I loved and it quickly turned into something I hated.
It was to the point where I would just have to go into the bathroom and cry and have a panic attack for no reason at all. I began to have trouble sitting still in class and my eyes become overly sensitive to the bright lights. Not to mention my vision continued to worsen and I had a pounding headache all day long. Everyday at school I struggled to focus. I used to be the opposite. I also started to become an introvert. Which was very new to me considering talking is one of my favorite things to do.
I had a really hard time understanding why I was feeling the way I was, but luckily my boyfriend stood by me and was my rock through all of this. As well as my family and his family. It got to the point where I would miss a full week of school, an impossible thing to make up. We kept on going back to the doctor and they kept on saying the same thing. That it was a virus or a stomach bug. It got to the point where we visited several doctors and we couldn't get any more doctors notes to excuse my absences because they didn't believe I was sick. It ruined my trust in doctors completely and made me feel as though I was stupid for needing help.
My parents and I both decided online school was the only option I really had considering my symptoms were so severe that I couldn't be in a school environment without the fear of passing out or experiencing extreme pain or anxiety. Online school was an amazing choice but it was also bittersweet that my health left me with no other option. My mom was still looking into Lyme disease doctors. I begin to develop even more symptoms. Such as dizziness, back and neck pain, nightmares, night sweats, heat flashes, light depression, weight loss, indecisive behavior, over-emotional behavior, severe mood swings, heart palpitations, fainting episodes, low grade fevers, abdominal pain, cold extremities, pain behind the eyes, unexplained bruises, and the list goes on.
One day I woke up and fainted and continued to faint throughout the day. It was a very scary moment for me and my whole family. I was the palest I've ever been, and I looked like I got hit by a bus. I went to the doctor, who said that I just needed to eat more salt and drink more water. I was having heart palpitations and I couldn't stand on my feet for more than a minute without my lips turning blue and my whole body going white, however, they didn't think it was anything more than a little bit of dehydration.
After about 5 days of laying in bed, I begin to try and live normally but it took about 2 weeks to feel good enough to even go to the grocery store. After that incident, we finally went to a Lyme specialist. We had to wait about a month before I could be seen.
He clinically diagnosed me and sent me home with tests. We later found out that the test that he sent me home with would cost about $500. Which is obviously an insane amount for one test. We decided that was not the right doctor for us and we kept looking. Pennsylvania is home to many many ticks. Which makes it concerning that insurance does not cover chronic Lyme treatment. Let alone there is hardly any specialist in the area who are highly educated about the illnesses. If you go to an infectious disease doctor in Pennsylvania they will tell you that there's no way you can possibly have it if you don't remember getting a tick bite let alone having a rash. The biggest problem is definitely the insurance not covering any of the test or the doctor's visits.
My boyfriend's family goes to one of the most amazing Lyme doctors and my family decided that was the place for me to go. So luckily we avoided the waitlist and got in the next week. We traveled up to Connecticut and it was amazing to hear that all of my symptoms were very common and that with antibiotics I would be better in the future (mostly). But it's not an easy process and takes a lot of patience. One of the co-infections that I have is called Babesia, which attacks your red blood cells. There is no doubt that God has been with me through this whole journey when I heard that news.
It's definitely going to be a long journey, but I am so relieved to be understood and finally begin treatment. I felt as though I was on my death bed many times because of this vigorous sickness, however, something that affected me almost as much as how my trust in doctors had faded. And it's something that will stick with me for the rest of my life.
They made me feel as though I was crazy and that it was all in my head.
That's where I am now, and I am extremely lucky to be getting treatment.
I may have lost my opportunity to be in a public school and live a normal teenage life as of now, but I will never lose my new found passion to make Lyme disease known about. It's scary to think that there could be millions of people struggling with this disease because of the lack of education and knowledge doctors have. I have hope that one day all of those suffering from this chronic illness will be treated without being called crazy by their own doctors, and that they shall go on to live a normal life.
What I ask of the people who read this is to spread the word, have others read my story so that my suffering, and the suffering of many others, can have a newfound purpose and can save thousands of people in the future. It's hard to look fine on the outside but feel like there's nothing left in you, not even an ounce of strength and have no one understand.
Chronic Lyme disease causes serious symptoms that are comparable to many other chronic illnesses who have so much attention drawn to them and are highly respected by doctors. People with those illnesses have no problem getting treatment. Yet, we stand as the outcasts. I am always going to be hurt by all of the doctors that have looked me in the face and told me that I am fine and I just have a "virus" when I have been struggling for almost 7 years with everyday symptoms that make my life miserable.
There needs to be more awareness spread and people need to become more educated about this disease. Please take it for me, a girl who used to be full of life and is now struggling just to get through each day, wondering if this disease will take away any more of my life.
Changes need to be made and awareness needs to be spread before it's too late.