Back to the Start: The Onset of Lyme Symptoms | My Lyme Disease Story: Part One
For those new to here, let’s catch you up to speed. At age eighteen, only a few months into my first year of college, I became sick with Lyme disease. Almost four years later, here I am still sick with one hell of a story to tell. As with any good plotline, my Lyme disease story needs a bit of background. Let’s go back to the start of it all...
Where It All Began—One Tick Bite is All it Took
I grew up in small-town New Hampshire where, as a child, I spent most of my school breaks outside. I spent summer days frolicking in fields of grass and exploring the woods surrounding my neighborhood. I blissfully enjoyed the great outdoors as a youngin’, surrounded by a frightening amount of ticks, some of which carried bacterial infections that held the power to knock any human on their ass. Ticks were a normal part of life growing up: an aspect of rural New Hampshire living that I barely batted an eye at. I was ignorant to the potential each tick had to drastically change my life forever. It is a wonder how I did not become sick with Lyme disease sooner. That being said, I would not have changed a single thing about my childhood. As I see it now, the exploration, creativity, and wonder I found in nature as a child were worth the risk. One that, at the time, I didn’t realize I was taking.
Fast forward to age eighteen. I was an ambitious, curious, and slightly naïve young adult entering her first semester of college. Feeling like the world was at my fingertips, my head was constantly spinning with grand plans for my future. I was running at a hundred miles an hour with no intention of stopping any time soon. Little did I know that my rapid momentum would soon come to a roaring halt and all my plans put on pause, all due to a measly little tick bite: a tick bite I don’t even remember getting. It is ironic how something so seemingly insignificant can have such a serious impact on the trajectory of your life.
I went to college in the Seacoast region of New Hampshire, which I would later find out is an area with a proportionally high Lyme-infected tick population. It was a breeding ground for Lyme disease. Whether I was initially bitten and infected in my hometown or while at school, at some point I got bitten by a tick that was carrying borrelia, babesia, and bartonella bacteria: the bacteria responsible for causing Lyme disease and other tick-borne illnesses, also known as co-infections.
Have a Rash? Count Yourself Lucky
The strange thing is that I don’t ever remember getting a tick bite, nor did I ever have an obvious rash pointing towards a Lyme disease infection. There was no warning sign within those weeks to months before my first symptom that offered any indication that I was bitten. This brings up the first great misconception about Lyme disease: that everyone with Lyme disease gets a rash and/or recalls getting a tick bite. Unfortunately, there is this idea among some doctors that if you don’t have a rash or obvious bite, then it is not worth exploring the potential of Lyme disease. Oh, does this boil my blood! I am just one of the many people living with Lyme disease that did not get a rash. Those who do get a rash—boy, do I envy them. It may sound odd because usually a rash is an uninvited inconvenience. Yet when it comes to Lyme disease, a rash is a golden ticket—and if that rash is in a bullseye shape, wow, you hit the jackpot!
In all seriousness, it is much easier to get a proper diagnosis when you have the most stereotypical symptom of early-stage Lyme disease. Yet just like all stereotypes, this one only reigns true in a portion of cases. The fact of the matter is that not everyone gets a rash, and those who fail to present this symptom can find it much harder to be taken seriously by doctors. Those with a rash are also more likely to be treated sooner with antibiotics, which is a game-changer. Treating a Lyme infection early can mean the difference between having an acute case of Lyme disease and having it progress to a chronic condition that is much harder to treat. Now, there are plenty of Lyme patients with rashes that fall through the cracks—but in general, if you find yourself with a bulls-eye rash, count yourself lucky.
The First Early Stage Lyme Symptoms
I vividly remember the last days of my life where I felt “normal”...before the symptoms set in...before all the confusion and concern...before my life was turned completely upside down...the last few days when my health was barely an afterthought. I have thought and worried about my health every day since. I am still amazed at the incredible amount of energy I had back then.
The initial symptoms I experienced from Lyme disease were easy to dismiss at first, for like I said before, I never received an obvious rash. In early November of 2016, I started to notice myself having more anxiety. Although I had experienced anxiety throughout my life, this type of anxiety was more random, frantic, and harder to control. I brushed this off as a side effect of my transition into college, assuming that it was normal to experience increased mental uneasiness with such a life change. Around this time, I also noticed a series of unusual acne breakouts. Like the anxiety, I had experienced the typical hormonal acne teenagers often experience throughout puberty, but I had not had issues with breakouts since going onto birth control the year prior. These symptoms were unusual and notable, but only in hindsight did I realize that those were the first indicators that something was off in my body.
Insomnia was the next symptom—this one was a bit more bizarre. Despite being a light sleeper, never before had I experienced any severe sleep issues. Yet, almost out of nowhere, I began to have nights of insomnia. Since then I have had countless nights where I’ve unwillingly stayed awake long enough to greet the sun the next morning, but those initial nights of insomnia were unsettling. A few weeks in, I became sick with what felt like an extreme cold or light flu. I had a fever, headaches, chills, etc. This lasted for about a week, but again I brushed it off. I told myself it was a pre-winter cold and tried to get on with my life. I would later find out that it was my body’s way of experiencing the true onset of the Lyme infection. Experiencing a flu-like sickness is another tell-tale sign of early-stage Lyme disease, one that unfortunately went way over my head.
I had one week after this “cold” where I felt somewhat close to normal. This was only the calm before the storm, however, because from there my health went downhill, rapidly. The insomnia became more frequent and severe. I began to have regular headaches. I also began to experience spells of dizziness and lightheadedness. Such spells involved sensations I had never felt before. They were far worse than the head rushes you get when you stand up too fast. They lingered for an uncomfortably long time and left my body feeling very weak and unsettled, as if I could pass out at any given moment. Sometimes these spells were mild and lasted for only a few minutes. Sometimes they hit me like a tsunami, rendering me unable to move or comprehend what was happening. Sometimes they lasted for tens of minutes.
These dizziness spells also played with my vision in a very obscure way, giving it a sort of out-of-focused fuzziness, as if I were looking through lenses with a slightly off prescription. The best way I can describe this holistic body sensation is that I felt like I was drunk or incredibly high, all the while being completely sober. This is a symptom I would end up experiencing constantly as my illness progressed. By constantly, I mean all the time. There was a stretch of seven months during which my vision and “equilibrium” felt slightly off 24/7.
With each spell, I also received a wave of panic and fear. Not only was each acute episode of dizziness a scary experience, but I became concerned with the frequency of them. It was then that I knew something was wrong and I eventually visited a doctor at my school’s health center.
Over the last month of the fall semester, I saw three different doctors at my school’s health center and had a few different blood samples taken, but there were no answers or conclusions drawn. By that point, I had become so stressed and anxious about my health—all the while trying to keep up with classes—that I just wanted to get the semester over with. I assumed that all I needed was some rest over winter break and I’d be good to go for my second semester. Spoiler alert: that didn’t happen.
All of a sudden...Bedridden
My state of health went from a hundred to zero quite quickly. After returning home from school, I grew very fatigued and ended up spending much of my days sleeping. Over the span of two months, I went from being healthy, active, and spry to bedridden, consumed by anxiety and confusion, and experiencing a slew of bizarre symptoms that progressively got worse. Over the next few months, my list of obscure symptoms would continue to grow and I would be sent into a downward spiral of panic, depression, and hopelessness. I realize that this may sound dramatic, but at the time, the reality of my situation felt hopeless.
The period of time in between noticing my first symptom and finally getting an accurate diagnosis was the hardest experience I’ve been through to date. Those ten months were the darkest, most challenging and confusing days of my life. I hit my rock bottom. Not only was my physical health at an all-time low, but I was also struggling with my mental health. I recognize how serious and personal of a topic this is to breach, but it is so important to shine a light on the mental health side of chronic physical illness.
In the next chapters of my story, I’ll cover my journey to diagnosis, the progression of my symptoms, and talk more about the emotional and mental rollercoaster I was on as I struggled to find answers.
That’s all for now!
Much Love, Annie