Like most people, my Lyme Disease diagnosis was years in the making. Also like most people, I do not remember a tick bite. All I know is for a long, long time, I have not felt “right.” A 21-year-old isn’t supposed to have extremely sore and aching hands. A 23-year-old isn’t supposed to be tired and need a nap an hour after waking up from a full night’s sleep. A 25-year-old isn’t supposed to feel dizzy and feverish multiple times a month. It’s not supposed to happen…but it happened to me.
For a long time I pushed aside the symptoms I was having. The aching hands, the chronic fatigue, the brain fog, the full body aches, the feverish feeling…all those things were happening for years but I just “didn’t have enough time” to go to a doctor. Not to mention I didn’t even have a go-to physician since graduating college, so researching and finding someone to see seemed like a daunting task that I “did not have time for.”
After my grandma passed away in February of this year and me moving out of my very first apartment into living with my boyfriend, Mike, things got worse. I was feeling terrible most days of the week from the stress of grief, moving, and big life changes. My coworkers noticed me complaining a lot about vertigo and dizziness and eventually convinced me to see a doctor. I scheduled an appointment and went, thinking the doctor would tell me that I most likely had Fibromyalgia.
Twelve vials of blood and one week later, and I get the diagnosis: Lyme Disease. The disease my mom had warned me about as a kid when I would play outside with my friends on the swing set. I even once had a tick in my head as a kid, and my mom saved it in the freezer for almost a year “just in case” I started feeling ill. I had heard of Lyme Disease, but had no idea what that meant for me. I spent the rest of the day Googling Lyme Disease at work and finding terrible things on how it can affect your heart and brain, and how most people live with Lyme symptoms for years after treatment.
In my Googling spree I was able to find a Lyme Disease support group on Facebook and I requested to join. Right away I noticed people talking about how they could barely get out of bed most days, how they struggled to manage all of their diet, supplement, medication protocols, and how even after treatment, most of them still felt sick. I didn’t know what anything meant for me, except that I was put on 28 days of Doxycycline, two times a day. In the group I read about “herxing” which is basically your body’s reaction to toxins being killed off inside of your body. This kill-off can make symptoms worse before they get better, and boy did they get worse.
In that first month of living with Lyme (or knowing I had it at least) I must have missed five days of work, maybe even six. Herxing can literally make you feel like you are dying…because well, things are dying inside of you. It feels like you have a fever but no matter how many times you take your temperature, it’s still 98.4 degrees. It feels like you did a full body workout for three hours the day before your body is so sore, and the brain fog and tiredness feels like someone slipped a Xanax in your drink.
No one saw this side of me except for Mike, so when people saw me out and about at work or on a weekend, they would say “I see you’re doing better!” But that’s the thing…Lyme is completely unpredictable in how you will feel from one day to the next. Even now, almost four months after my diagnosis, I can have a full week of feeling great with little or no symptoms and then an entire three days of feeling like shit.
Since being diagnosed I have had a lot of people reach out to me…people I haven’t talked to in years contacted me. I have made connections online with the Lyme Disease support group and was even approached for advice when someone I knew was diagnosed themselves. It is a lonely disease because no one really sees your suffering, and those who do see still can’t ever understand how you actually feel. But, it has been truly remarkable to me the support I have been getting from family, friends, my job, and even strangers. I know this is not the case for everyone with Lyme, so I do not take this support for granted.
This is only my diagnosis story. I’m still dealing with symptoms and will be for the foreseeable future, but my diagnosis has helped me realize how strong my body truly is to fight this, and how lucky I am to not have to fight this alone.