Progression of Symptoms: From Early-Stage Lyme to Bedridden | My Lyme Disease Story: Part Two
Updated: Jul 22, 2020
If you find yourself here randomly, welcome! Let me catch you up to speed; I’m Annie and I have three chronic tick-borne illnesses, including Lyme disease and two co-infections. My life with Lyme disease began in 2016 in the midst of my first semester of college. Four years later, here I am to share my story in hopes to offer some insight and inspiration to others.
Where was I? Oh yes...the progression of my symptoms. How fun. This one is a long one, so get comfy.
Progression of My Lyme Disease Symptoms: From Early-Stage Symptoms to Bedridden
Cut to mid December 2016. My first semester of college was over. Finals were done and classes were passed. I was exhausted and relieved that my first semester was over. I had associated my bizarre symptoms with the excitement and stress of college and, in turn, was convinced that with rest and distance would come recovery. *Key in ominous music to indicate ironic foreshadowing*
I was exhausted. I remember, for the first time, embracing it. I lazed around waiting for the symptoms to pass. They never did.
Nearing the end of December and there was still no change. I was still very tired and sick. I have a distinct memory of becoming fed up with waiting and doing nothing that I decided I was going to push past it. Out of spite for what my body was going through, I impulsively decided to work out. I was by no means in any state to do any sort of exercise, but I was determined. Having grown up a very active and energetic person, I was quickly driven stir crazy by doing nothing. I put on a workout video and began to bounce around my living room, determined to move myself out of the funk I was in. Within a few short minutes, I was incredibly dizzy and exhausted. With my head pounding and my body feeling completely out of equilibrium, I stopped, feeling defeated. It was at that moment I knew something bad was going on in my body.
Towards the end of December was when my energy started to really decline. I was not at the point of pure fatigue yet, but my stamina was almost completely shot. I continued to experience more of the same dizziness episodes that I had experienced before. There was also a new category of symptoms added towards the end of the month: various ear issues. My right ear felt very clogged, full, and a bit painful. I would also get spells of tinnitus, or buzzing, in both my ears. This all led me to think I may have had an ear infection. It would explain the spells of dizziness, right? Maybe the exhaustion?
It wasn’t. That was just one of the many potential explanations I contrived to explain what was going on with my body. Each potential explanation was a temporary band-aid to cover the panic I was feeling as I felt my health spiral out of my control.
By the time January came around, I was practically bedridden. I spent between 18 and 22 hours in bed, depending on the day. My low energy had developed into fatigue. And to catch you before you think it—no, fatigue and being tired or exhausted are not the same thing. Being tired or exhausted implies that you once had energy that—through work, activity, or time—you are gradually drained of. When you are fatigued, you simply start off with no energy. You physically have no energy to exert. Being tired is often improved with sleep. When you experience fatigue—especially chronic fatigue—your energy is not affected by how much sleep you get, nor can be truly improved with sleep. Often with exhaustion and tiredness, you can push through it if needed. With fatigue, you have no choice of pushing through it. You are limited right off the bat. Fatigue was by far one of the most limiting and debilitating symptoms I experienced. Without energy, “normal” life was very hard, and eventually impossible, to manage.
Another long term symptom that had a high impact on my abilities and quality of life was what I termed “dizziness”. As I discussed earlier, I would experience spells of classic dizziness and lightheadedness. There were even days where I experienced vertigo. Yet I also experienced an underlying sensation of mild dizziness that persisted even through my eventual treatment. I would describe it as a sensation of my body feeling slightly drunk or high but without the cognitive effects. Something about my vision felt fuzzy and my depth perception was off. It was like my entire equilibrium was just slightly skewed and as if there was a disconnect between my vision and the rest of my body. I’ve yet to find a term that fully and accurately describes this sensation, but upon discussing this symptom with other Lyme patients, I came to find that this was a shared symptom across many Lyme cases. This “dizziness” eventually became constant. That is not an exaggeration. I mean all. the. time. The severity of it would fluctuate. If I overexerted myself, it would worsen significantly. It would become aggravated with overstimulation, as well.
It wasn’t until the next summer that my constant dizziness became less noticeable. Although it has significantly and gradually improved with treatment, it is a symptom that I still experience in occasional spurts when I’m having a bad Lyme day or have physically overextended myself. This symptom is also characteristic of my herxing, which is a reaction that accompanies Lyme treatment—but more on that later.
Such fatigue and dizziness were also accompanied by a general sense of malaise. I simply felt gross and sick. There’s no better way to put it than, regardless of my most prominent symptoms, I most always felt crappy, sick, and achy. In a way, I felt like I was slightly hungover all the time: like my body was over-toxified and in need of a good cleanse.
Sinking Into Depression: A Deterioration of My Mental Health
By the end of January, I had decided to take the spring semester off of school. There was no sign of my health improving and I was in no physical or mental state to be able to handle another semester of classes. By this point, my mental health had taken a significant hit. For the first few weeks, I was holding this hopeful and naive assumption that all I needed was time to heal. I was waiting to get better and was refusing to think about the “what ifs” of the situation. What if I don’t get better with time? What if there is something more serious wrong with me? What if I have to put my life on hold because of this? When I realized that it was not going to be a quick and simple recovery, and that I would have to forgo the end of my Freshman year and be stuck in small-town New Hampshire for the foreseeable future, my mindset changed. I quickly became very depressed, anxious, and hopeless. I don’t think I can overemphasize the significant mental health battle that accompanies a chronic illness. Not only do you endure physical symptoms that are enough to drive anyone’s stress levels up the wall, but the impact that a chronic illness can have on your quality of life is significant enough to ruin your mental health, as well.
Just as much as my journey with chronic Lyme disease has been a physical journey, it has also been a difficult battle with mental and emotional health. Because this is such an important topic to discuss, I will also be sharing a separate article that encompasses more my mental health story. For the relevance of discussing my symptoms, however, it is important to mention just as much as my anxiety and depression was situational, it was also a direct physical symptom of my infection. Lyme disease and co-infections can cause changes in mood and mental state, including unexplained anxiety and panic attacks. Much of the extreme anxiety I was feeling felt beyond “situational”. It felt uncontrollable and unexplainable. There is a connection between the physiological impacts of the infection and the mental manifestations of such impacts, i.e. anxiety.
For example, through treatment I’ve come to find that much of my anxiety associated with Lyme disease has been related to the impact Lyme has had on my hormones. To be blunt, Lyme disease screwed up my hormones. Big time. I had gone off my traditional, estrogen-based birth control in early January to see if my early symptoms were a side effect of those artificial hormones. To no avail, I remained off the birth control, but my hormonal symptoms only continued to grow more out of whack. My period was very inconsistent. I experienced mood swings and irritability at random. My anxiety was all over the place. Most noticeably, my skin complexion was also out of control. I experienced spouts of bad hormonal acne and skin sensitivity. To this day, my skin is still affected by Lyme disease.
A Growing List of Symptoms
Each week or month that passed seemed to bring a wave of new, obscure symptoms. In addition to fatigue, dizziness, and a variety of ear-related issues, I was also experiencing significant headaches throughout these months. They are another symptom that I’ve become well acquainted with. I also experienced mild joint and muscle pain that, although was not my worst symptom, lingered for many months, even into treatment. You can also add various gastrointestinal symptoms and occasional nausea to the list.
Insomnia continued to pay me random visits. Insomnia would grow to be one of the most frustrating, long term symptoms I experienced. To this day, it is one of my most dominant and persistent symptoms. I’ll cover the relationship between Lyme disease and insomnia more in-depth another day, but know that it is incredibly common among Lyme patients and also very hard to mitigate and control when it happens. It is ironic that, although you can be consistently tired and fatigued, you somehow can’t get your body to fall asleep. No matter how desperately you feel you need the rest or how calm you make your mind, when insomnia decides to rear its ugly head, there is no stopping it. It has complete control, and most of the time ignores any attempt you may make to manage it: sleep medication, melatonin, CBD oil. Often insomnia refuses to leave you alone, despite the classic treatments for sleeplessness.
I also experienced brain fog and forgetfulness. Brain fog is another difficult sensation to articulate; your mind feels clouded and groggy. You’re unable to think straight, recall words easily, or focus. It often accompanied my dizziness spells, making me feel all the more incoherent. This brain fog has persisted throughout my treatment and is another symptom I associate with herxing. I also became forgetful. Short term memory became a bit of an issue—not in the sense that I would forget entire conversations or experiences—but every now and then I would be unable to recall actions I just took or I would repeat myself in conversations, articulating the same idea or anecdote multiple times. Let’s just say I found my phone in some very odd places over these past few years. Even now, I will sometimes forget if I took my morning medications or find my phone in a random kitchen drawer.
Late Stage Lyme Symptoms
These symptoms continued into late spring. By then, my energy was fluctuating greatly. There were days when I had the energy to be more active and get out of the house. Part of me was excited by the prospect of the “improvement” I had seen in myself, yet I was still incredibly anxious. I hated the idea of feeling the pressure to move on “as is” without knowing what was going on with me.
Around early July I was hit with a bad fever that was accompanied by a wave of headaches, fatigue, a sore throat, and dizziness. My anxiety also skyrocketed. It was nearly crippling. Shortly after a whole slew of new symptoms arose. This involved increased muscle and joint pain, including knee pain, which is a stereotypical symptom of Lyme disease. I also began to have chest pain—where my chest felt tight and my ribs felt very sore—which I later found out was a marker for one of my coinfections, babesia. With this, I also experienced what us people in the Lyme community deem “air hunger”: the sensation that your capacity for taking a full breath feels restricted and your entire body feels weak and hungry for air. Another babesia symptom that enabled my future doctor to quickly diagnose me with babesia was soreness of the bottom of my feet and soles, especially first thing in the morning. This bizarre symptom is characteristic of the babesia co-infection.
A few more neurological symptoms arose as well; I began to have waves of tingling throughout my body and occasional numbness in my legs. I became notably more sensitive to light and sudden sounds. My skin sometimes felt like it was burning and became sensitive to the touch. The way I described this at the time is that it felt like the surface of my skin was being burnt with acid. These symptoms also came in tangent with my sleep issues. Often upon trying to fall asleep, I would get these waves of tingling and skin sensitivity. Sometimes my heart would start beating rapidly. This became especially noticeable on the nights when I had insomnia and persisted well into my days of treatment.
The Nature of Lyme Disease Symptoms: Noticing Patterns and Odd Characteristics
Over the nine to ten months before my diagnosis, the list of my symptoms gradually grew. New symptoms would pop up randomly, and each new symptom felt completely unrelated and unique. My symptoms were not confined to one part or one system of my body. Starkly different systems were being affected, which made finding a likely cause for them even harder to do. Down the road, I would discover that Lyme disease has the potential to affect any and all systems of your body, which is why it can so often go misdiagnosed and undiagnosed. That is why I experienced neurological symptoms, like nerve sensitivity and dizziness, while also having gastrointestinal symptoms and hormonal symptoms, such as nausea and severe hormonal acne. All seemingly unrelated symptoms caused by the same illness. Note that certain symptoms are characteristic of separate and individual co-infections, but more on that later.
As more time passed, I began to notice patterns in the frequency and severity of certain symptoms. For example, every few weeks, I would get a bout of what felt like a bad cold: sore throat, mild fever, and increased headaches. It would last a few days, disappear, and be back a few weeks later. Another odd pattern I noticed was that my headaches, body aches, and brain fog were most severe when I woke up in the morning. Even now, I wake up almost every morning feeling slightly groggy and almost as if I were slightly hungover. My mind is unclear. Sometimes I’ll feel dizzy or weak. Usually, this will pass within the first half hour and I can get on with my day.
I also noticed that the severity and frequency of each symptom were not consistent. This was very confusing to me, as my symptoms did not follow the usual “start off bad, gradually get better, and go away” sequence that I had once associated with disease and acute illness. My symptoms waxed and waned throughout each week and month. For clarification, here is an excerpt from my health journal that I kept at the time:
“My symptoms are all over the place and affect a variety of systems and parts of my body. Not all symptoms have occurred at the same time; they have surfaced separately over the past nine months and have fluctuated…I have some better days, and then some very bad days. I am very up and down, but always have some set of symptoms every day.”
The inconsistent nature of my symptoms was incredibly confusing and misleading; at the time it led me to believe that I was getting better. Some days my energy would improve slightly, or I would wake up in less pain, or I could better tolerate activity. Such “improvement” would give me a sense of false hope and excitement—Maybe it was all coming to an end?! Then a few days later my condition would plummet and I’d be sent back to rock bottom all over again.
This cycle was confusing, frustrating, and at times devastating. It was also hard for my family to understand why one day I was “feeling better” and then the next I had made a complete one-eighty and felt worse. This made me feel like I was going crazy. Up until my experience with Lyme disease, I had always known illness to be characterized by starting off at its worst and progressively getting better. The fact that the progression of my disease was not linear made me—and my family—all the more confused.
I would later find out that this waxing and waning of symptoms is very characteristic of Lyme disease. It is attributed to—to my ammeter understanding—the growth behavior of the bacteria. I will butcher this explanation, so bear with me, but as the infection grows, the bacteria goes through various “phases”. Some phases are more active and severe on your body, resulting in a worsening of symptoms. Then bacteria go through a more stagnant and docile phase, giving your body and break and you the feeling of miraculous improvement. I noted that it felt like the cycle occurred every four weeks or so, which is common with tick-borne illnesses. In females, this cycle also commonly lines up with the menstrual cycle. There is a much more eloquent—and likely accurate—explanation of this cycle. All the same, it is very bizarre, misleading, and worth noting.
These bizarre attributes of my symptoms would one day be the key to my diagnosis. The patterns and abnormalities that I had noticed aligned with the characteristics and behaviors of Lyme disease. Each symptom was explained by the diagnosis of a certain tick-borne illness. I would eventually find a Lyme literate doctor who read my list of seemingly random and obscure symptoms like a detailed guidebook. That doctor was able to find clarity and explanation in my list of symptoms that had only confused other doctors. She was able to see each symptom as a piece of a puzzle, ultimately leading her to discover the root cause of my disease and providing me with a clear diagnosis.
Speaking of, by now you’ve probably noticed a big part of the story missing: doctors visits and diagnosis. That in and of itself is a messy and complex story to tell, which is why I’ve reserved it for a separate article. As my symptoms progressed, I was going through a slew of doctors visits and tests in attempts to find an explanation for my experience. It took ten months to get properly diagnosed. But more on all that later…
Until then, much love!