Hey to anyone who is reading this. Throughout my journey of being diagnosed with Lyme disease I found the Internet to be the most helpful resource available. Reading about what other people have been through has really been the most beneficial information that I could receive. I figured i would put my story online in case there is someone else out there going through exactly the same thing as me. I never knew anything about Lyme before I read stories online and I feel it is my duty to put my personal experience out there.
Before I got sick I was a healthy, 19 year old studying civil engineering at the university of Akron in Ohio. April 23, 2015 I woke up to a hugeeeee rash on the back of my right calf. I had no idea where it came from. It looked like a bruise but it didn’t hurt and I hadn’t got hit by anything there. The only thing I could think of was a mosquito or spider bite from being in a metro park four days prior. I took a picture of it and a few days later it went away so I thought nothing of it. A few days later I began to get these strange dizzy spells. I thought it was just from allergies so I brushed it off. Along with the dizzy spells I began to get this weird feeling in my head. It was like I was in a haze; I couldn’t focus on anything and it just seemed as though nothing was real around me. This symptom has been the worst by far throughout my whole journey. For the first month, these two symptoms only happened a few times a week and only at night. Of course I didn’t think there was anything seriously wrong with me cuz I looked fine, I could still go to class and workout, and I was still acting the same.
In May I began to get really bad fatigue. I never felt like doing anything and I would cancel on my friends and just lay in bed all day. My dizziness had gotten better so again I didn’t think I was actually sick. I just figured it was from switching my birth control pills and it would go away.
June was the month that EVERYTHING changed. I was taking two summer classes and on June 17 as I was walking to my class I got very very dizzy. The world was spinning and I couldn’t think straight. I went to class and the whole time I was sitting there I felt so disoriented. Little did I know that the next 3 months I would feel like this.
From there on out I began going to countless doctors and getting tons of tests done. Everything came back normal. Every doctor told me I was fine. I saw 10 specialists, 2 emg/nerve conduction tests, 2 mris, a cat scan, allergy testing, and TONS of blood work. It was living hell going to countless doctors and always hearing the same thing. I KNEW I was seriously sick because normal people don’t have brain fog, dizziness, disoriented feelings. It was so hard to explain these symptoms because other people don’t know what it feels like. In addition to these symptoms I also had:
numbness and tingling on my calves
chest pain and difficulty breathing
pressure on the right side of my head
ringing in my right ear
vision changes: after images, blurred vision, spots, pink lights, floaters, shooting lines
numbness in hand
extreme neck pain
Sensitive to light
muscle twitching and jerking
these symptoms would come and go and some have gotten better actually. The thing that sucks about the symptoms for Lyme is that they are so nonspecific that when you present them to a doctor they don’t know what to do. They either write you off as crazy or give some bs diagnosis. I was told I have migraines.
Of course I didn’t believe this so I became my own doctor. I began researching my symptoms and when I found Lyme I actually was happy. Happy because I finally found something to explain my mysterious misery I was going through. This was at the beginning of septemeber. That same week my mom demanded I be tested with the western blot. My doctor of course didn’t want to but pretty much had to agree seeing how upset my mom was.
According to the CDC a person must have 5 bands present on the western blot to be diagnosed. Tons of people don’t have any.. I had one, band 41 on igG. This band shows up for every person who has been exposed to Lyme bacterium. This was enough for me, but obviously not enough for my doctor to treat me. (In China, one band is enough to diagnose Lyme….wtf America)
I knew I had to start treatment right away. My mom happened to have tons of extra doxycycline (which is one of the antibiotics used to treat Lyme), and I have been taking it since 9/11. I have an appointment with a Lyme specialist October 13, and I cannot wait to go. I am hoping that by taking the doxycycline I am helping myself a little but I can’t tell yet. I am still experiencing the brain fog:(, dizziness, disoriented feeling, as well as hand pain, pressure in head and slight chest pain. I am looking forward to meeting with him and getting on a treatment plan recommended by a doctor and not just figuring things out for myself.
I will use this blog to document how I feel on a weekly basis and describe my ongoing journey with Lyme. I consider myself one of the lucky ones because most people go years without a diagnosis.
Best wishes to everyone with Lyme. Feel free to add me on Instagram @samzidd and twitter @sjayyz if you would like to talk.
I will keep you posted.