The Beginning of my Story

When you fill out patient forms in doctor’s offices, especially when visiting a specialist, there is often a reoccurring question, “When did you last feel normal?” I’ve always struggled with this question and it wasn’t until I heard the words “Chronic Lyme” that I understood why.

My Lyme disease story starts in 2000. I was only 5 years old and I can only remember bits and pieces of my initial contraction, the rest of the story is filled in by my parents. Everything went right for an early diagnosis; my mom saw the tick on my eyebrow, I developed the bull’s-eye rash, I went to the doctor immediately. But there was one big hurdle. It was allergy season and my primary physician at the time was convinced that it was just a case of allergies and I was given a dose of Benadryl. Still, my body was persistent in telling me that I had Lyme. A few weeks after my first visit to the doctor, I developed Bell’s palsy in my face and had severe vision and hearing issues. My mom, the advocate she has always been for me, went from doctor to doctor to get me tested for Lyme because her gut was telling her to. Eventually, after a hospital visit, I got tested for Lyme disease and got a positive test result. I was put on an adult dose of doxycycline and my symptoms went away. My memory of this whole ordeal is limited to waking up with blurry vision, having trouble talking, lots of scary needles, and being very very tired.

With what seemed to be a well treated and concluded illness, we were satisfied and I went on living my life. But still, something was off.

I remember thinking I had appendicitis when I was 8 because my stomach hurt so badly.

I remember leaving Hershey Park because I had diarrhea.

I remember having to keep meal charts and logs of my bowel movements. 

I remember giving up dairy when I was 12 because no matter how many supplements I took with it, it always made me sick.

Then I gave up red meat.

Then I gave up eggs.

Then I gave up gluten.

Then I gave up acidic fruit.

Then I gave up sugar.

Then I gave up fish.

Then I gave up all meat.

Then I gave up nuts.

Then, I ran out of food. Everything made me sick.

So we were back on the voyage of finding a diagnosis. Crohns ? Nope. Celiac? Nope. Between the physicians, gastrologists, and allergists, the only answer we were ever given was, “It’s irritable bowel syndrome, a change of diet should clear up the issue.” There I was, 19 years old and my diet consisted of applesauce, saltines, raisins, rice, celery, and water. On good days I could manage some grilled chicken. But I learned to manage. I learned to deal with my restrictions and politely decline my favorite foods. I would weigh the costs and benefits when debating an indulgence, knowing that that piece of watermelon, so unthreatening to anyone else would have me knelt over in pain within the hour and in the bathroom all night. During the summer between my freshman and sophomore year of college I went from 145 LBs to 120 LBs and I slept on average 12 hours a day. We knew something was wrong, but we couldn’t figure out what.

Then, a friend of mine asked me something I didn’t expect. She said, “Have you considered your Lyme?” At first this seemed crazy. I didn’t have Lyme disease anymore, I was treated years ago. But after a visit to a local Lyme Disease Support group, I realized that I am not the only Lyme survivor who struggles with gastrointestinal issues. In fact, sufferers of Chronic Lyme disease cite the same symptoms that have plagued me for years as some of their biggest issues as well.

The Great Imitator, that is the nickname that Lyme Disease has earned because it has the ability to appear as Crohn’s, Celiacs, MS, Fibromyalgia, and hundreds of other invisible illnesses. Not to mention the elusive nature of the co-infections that often come along with Lyme.

I wish that I could say that since this realization I have found a treatment plan that helps remedy my symptoms, but unfortunately, my list of symptoms has only lengthened.

In the winter of my sophomore year of college (2015), I started feeling strange. I started having issues with my memory and headaches. By March, I was experiencing severe dizziness and vertigo. The last half of the semester felt like a whirlwind of doctor’s appointments, new medications, and a constant fear of syncope. I would stand up at the end of the class and immediately faint, waking up to classmates and professors looking down at me laying on the floor. I would wake up on the floor in my dorm and not remember how I got there or what day it was. I would sit staring at my computer screen completely forgetting what I was supposed to be doing. I felt moody. I felt angry. I felt tired all the time. I felt foggy and confused. Something was very wrong.

So I saw cardiologist after cardiologist and was given the same response, “It’s a vasovagal and is very common in young women. Eat more salt and drink more water and we will have you back to normal in no time.” When I asked if Lyme disease could have anything to do with this new bundle of symptoms I was given the same response as always, “Oh no, Lyme couldn’t touch the heart like this.”

But I could barely finish the semester, as I could barely move around on my own without passing out. My mother continued to be my advocate, searching for doctors who recognized my symptoms as something that was treatable. Something that could be helped. Every so often we would catch a lead; a friend would mention POTS, a syndrome with similar symptoms or a doctor we found on the internet would recommend a new test or medication. Unfortunately, we were consistently left empty handed. I declined several internships and job offers for the summer and now, I sit here searching for answers and coping with my brain fog, fatigue, IBS, syncope, and chronic pain.

Several people have told me that I have a story to tell and I should use this time, when my body is too tired to work but my mind is too busy to rest, to tell it. There are people out there that could help me and there are people out there that I could help. So here I am, a Lyme Warrior with an untold story. A story with an unwritten ending, as I sit here at what feels like the 100^th dead end. And hopefully, a story worth reading.