Happy Lyme Awareness Month!

Last year, I took the approach of making a list of 31 reasons that I was thankful for my Lyme. But, this year I have a blog! So, if you’re ready, let’s go on a month long daily-blogging journey together! 

(Hi, I’m Leigh, and I’ll be your tour guide this month…)

Let’s start with my Lyme story. I've never put the whole thing out there at one time before, I don’t think! A lot of you probably know bits and pieces, but maybe getting it all out there will put those pieces together into something that makes a little more sense. Actually, probably not...I live it and it doesn't even make sense to me most days, but we’ll see.

Okay, so to get to the beginning of this story, let’s travel back to my 9^th grade year, 2004. (Please keep your hands and feet inside the tour vehicle at all times.) I had been having headaches for a few years prior, but it was during my first year of high school that I started getting migraines. Lyme that has been dormant in your body (in people who don’t remember having a tick bite, like me) can sometimes be brought out by traumatic events, either physical or emotional—and, 2004 was the year that both of my grandparents died. So, looking back now, we believe this may have been the beginning of my Lyme journey.

Fast-forward to 2007/2008. After two major leg surgeries within less than a year of each other, my headaches started getting worse, and I began having other weird symptoms. I started getting dizzy in stores, and smells and sounds really started to bother me. The fact that these symptoms started after huge physical trauma to my body further supports the fact that Lyme is exacerbated by trauma. Super.

So, I graduated high school in 2008, and went off to college. My headaches were getting worse and worse and I was starting to feel like I was never going to live a life without pain again. (Dramatic, at the time, probably. True to this day, absolutely.) So, I decided to come home from college after a year and a half. I was considering a change in majors at the time anyway, so I came home and decided to try and figure out my headaches before I set off on my new journey with a new major. Long story short, didn’t figure out the headaches. But, in the process I was told that it could be: Rheumatoid Arthritis, Lupus, Fibromyalgia, Lymphoma, and everything in between…oh, and the reoccurring favorite—“It’s all in your head.”

The summer of 2010, I turned 20. On my 20^th birthday, I got a sharp pain in my left eye and the peripheral vision in that eye went dark. I went to the eye doctor, had tests done that confirmed that I had a straight visual field cut down the middle of my field of vision. They said it was probably just a virus that set it off, since they couldn’t find anything else wrong, but they sent me to the ER for an MRI. This MRI found lesions in my brain. The ER doctor said, without a doubt, it’s MS, and sent me on my way to see my neurologist. Of course, it wasn’t MS. The lesions on my brain were indicative of neurological Lyme, but we didn’t know that yet.

I made it through one semester at my new school before things spiraled out of control. I was sicker than I had ever been, and I needed to figure it out. So, after a semester, I medically withdrew and came home again. We needed to crack down on things and get to the bottom of what was wrong. I found a doctor who was well known for treating Lyme, since we had kind of narrowed things down to Lyme at this point. While I was away for the previous semester, I received a positive test for Ehrlichiosis, another tick-borne disease (co-infection of Lyme). So, we decided to go the Lyme route with this new doctor and see what we could figure out. Luckily, this new doctor was absolutely incredible, and on my first appointment with him he told me “you are not crazy. I believe you. And we are going to figure this out.” For the first time, I felt like I was going to get the help I needed and that feeling is irreplaceable. So, he started me on antibiotics right away for the co-infection, and said that while we ran tests to try and get my positive Lyme test, those antibiotics would start fighting against everything that was going on in my body.

Then, one day I went for an appointment and there was a sign on the door saying that my doctors practice was closed. Wait, excuse me, what?! This man finally believed in me, was fighting for me, ultimately saved my life…and he was gone? Cue world crashing down around me. Turns out, he had to shut down his practice because he was cracked down on for treating Lyme. Yep, you read that correctly. Doctors are only supposed to treat Lyme for 28 days with antibiotics, and then their medical license is at the mercy of the CDC if they treat past that. You know, because chronic Lyme doesn’t exist. That’s why you’ve been reading about my long journey for who knows how long now. Anyway, where were we? Oh yes…no doctor, world crashing down. So, I set out to find a new doctor. Found one who was treating some other people in my area who have Lyme—perfect! Got an appointment with him, and found out that he wouldn’t treat me without a positive Lyme test. Easy, right? Just take some more blood, see the positive test, move forward with treatment. Wrong. The problem with Lyme (well, there are many problems with Lyme, but this is a big one) is that it is a master hide-and-seek player—emphasis on the hide. You could take my blood at 1:00pm one day, and have it come back positive for Lyme. Take my blood again at 1:05pm the same day, same test, same everything…negative for Lyme. The bacteria are fast moving, pro at hiding, and really god damn annoying. So, he took lots of blood, ran lots of tests…nothing. He kept treating me for the co-infection that I was already being treated for, as well as Babesiosis, a new one that he found with some of the blood work he did. But, no treatment for Lyme until I had a positive blood test—an official diagnosis.

I went back to school after a semester off, for my senior year. I had been taking classes online and at the community college while I was home, so I was still on track to graduate on time. I was so sick, on so many medications, and still dying for more answers, but I was going to finish school if it was the last thing I did. I worked with disability services to receive accommodations for my absences, and I had incredible professors who wanted nothing more than to see me succeed. I drove the three hours home almost every Friday to see the doctor, run more tests, get more medicine, sleep in my own bed for a couple nights, and then I drove back to school every Monday morning to push through another week with new medications, new side effects, and a new drive to get through to graduation.

Then, my doctor suggested that we send my blood to a lab across the country that would hopefully give us some cut and dry answers. He was tired of treating around the Lyme when he knew I had it, he saw me declining, and he knew something needed to be done. The test was ridiculously expensive, it took weeks for the results to come back, but it needed to be done and it needed to be done now. So, he took the blood, sent it away, and I went back to school.

Then, one glorious day in March of 2012, I received my official Lyme diagnosis. After years of fighting to get those words, I couldn’t control the tears when I found out I could finally move forward with the treatment that had been dangling in front of my face for so long, just out of my reach. So, he put me on antibiotics, and we decided right then and there that I needed to schedule surgery to have a port put in my chest for IV antibiotic treatment. I went back to school, somehow made it through the next few months, and graduated in May of 2012! Came home, got my port on May 15^th (three days after graduation—happy graduation to me!), and started IV treatment. Finally!

Since you’ve been reading forever at this point, let’s fast forward to today. Are you still with me? Do you know what day it is? Do you need a stretch break? I’ll give you thirty seconds; take a lap around the room.

Back? Okay, good.

At this point, I am still in treatment. I did 15 months of IV treatment through two different ports, and I actually just had my second port removed last week. I am port-less for the first time in two years, and it is very strange! I am at the point now where antibiotics aren’t really an option. We’ve done what we can with them, so we are trying alternative therapies now. We’re also dealing with the fact that my doctor has been cracked down on by the CDC, and he has had to change his treatment policies and procedures, which means my treatment plan has been changed, as well. I recently had a relapse in one of my co-infections, so that is being treated right now, too, while we figure out where to go next.

It’s been a long, messy road. And, it’s nowhere close to over. But, I’m nothing if not determined. The people in my life who have been there through all of this are incredible, and there’s nothing we can’t do.

If you are still reading this—thank you! Thank you for taking the time to get this deeper look into my Lyme life. It’s not something I throw out there every day in great detail…but, if I can’t share it during Lyme awareness month, when can I share it? Thank you, you are the best. Thank you for taking this journey with me. Come back tomorrow for day 2!

(You may now unfasten your safety belts and exit to your right.)