God, how I wish I had a time machine! If only I knew the moment I was infected, or when the symptoms were still easily treatable, or what eventually awakened this hibernating beast in my body! There are definitely clues from my childhood, and I often wonder if I had paid more attention, could I have prevented at least some of what was to come?
If only I knew when I was first infected…
There is no way to know which bug pulled from my skin and off of my scalp was infectious. This was the 80’s, and even living in the Midwest, where we knew to wear ball caps when hiking in the woods and often had tick-checks when we got home, no one really knew how dangerous these tiny ticks were or what to do with them. Do you burn them? Flush them down the toilet? Throw them in the garbage? Today, several prominent Lyme-advocacy groups suggest that you should actually take the specimen to a laboratory, such as IGeneX Labs in Palo Alto, California, where they can test the tick for disease. But we certainly didn’t know that back then!
While I don’t know exactly when I was infected, I do remember one particularly engorged blood-filled tick that was monstrous in size. I was probably 9 or 10 years old and panicked as mom pulled off the disgusting bug that had attached itself to my head. It still makes me shiver. Given where we lived, my parents at least had the knowledge to use tweezers to pull the tick straight out. But just as parents weren’t told to take the ticks in for testing, many were also given misinformation on how to remove them from our skin. Most people thought that applying heat, often in the form of a blown-out match, was the best way to release the ticks; however, burning them off may actually increase the risk of getting a tick-borne disease. With ticks currently spreading into new areas of our country at alarming rates, I wonder how many people know this even today?
If only I knew when the symptoms were still easily treatable…
I will admit that my memory is a little fuzzy, both from the brain fog that has since ensued and also the fact that this all happened over 30 years ago. However, I do remember a time in my pre-teen years when I called home sick from school almost every single day, never feeling quite right. I complained of nausea, no appetite (which has never been a problem for me!), aches and pains, lethargy, headaches, and flu-like symptoms. Doctors ran some blood tests (although I have no idea what they tested for) and chocked it up to pre-teen angst, hormones, growing pains, etc. However, I now wonder if this could have been the first sign of some type of tick-borne infection. Look up the symptoms of Lyme Disease in children and these fit like a glove. It amazes me how many stories I read that start in the exact same way. If only the doctors had tested me for Lyme back then, back when my body was creating the antibodies to the disease, and back when it may have actually shown up on an ELISA or Western Blot blood test (the CDC’s very narrowly focused testing method that works best in the early stages of the disease), If only I had been tested before the tick’s spirochetes burrowed their way into my organs, tissues, brain, joints, and whatever other comfortable new home they could find.
At about the same time, when I was 10-years old, I also vividly remember night terrors every single night, where I would run across the house to my parents’ bedroom too scared to sleep in my own bed. Guess what? Night terrors are also a symptom of Lyme. Now, as an adult, not only do the vivid nightmares persist, but I’m lucky enough to have added sleep paralysis to my list of symptoms. In short, imagine being absolutely 100% awake in your mind, but you are unable to move your body an inch. You can’t talk, scream, or give any signal to your bed buddy that you are experiencing this. Often, it is accompanied by loud noises, banging, explosion like sounds, and other unexplainable phenomena. I have no idea how long these episodes actually last, because your sense of time is all but lost; however, it feels like an eternity before you can finally pull yourself out of it. In my case, it typically happens as I’m falling asleep, and there have been a handful of nights I have done everything possible to stay awake all night (i.e. walking around the house, binge-watching tv, eating, etc.) just so I don’t have to experience this paralysis every time I start to drift off. If you enjoy a good fright, forget the next horror movie that hits the box office, and instead, do a quick Google search on movies made about sleep paralysis.
If only I knew what eventually awakened this hibernating beast…
In the early months of 2002, I had battled two rounds of bronchitis that wouldn’t go away, both of which resulted in prescriptions of Zithromax – the miracle 5-day dose pack of antibiotics that usually knocks out an infection in a snap. Although I have rarely taken antibiotics as an adult, I was a fairly sick kid and recall the bad bouts of bronchitis I suffered several times a year. I would sit up all night with my parents, wheezing, gasping for air, and scared to death that I was dying. I’m really not being dramatic here, the noises I made were scary and the feeling of not getting in enough air was terrifying. I’m not even sure that bronchitis was the correct name for what I caught every winter, but I sucked down plenty of amoxicillin, which would eventually kill off the sickness that I had caught.
The bronchitis episodes in early 2002 finally seemed to go away. However, a new issue popped up that summer, when my husband, Joel, was massaging my neck and noticed a lump on the left side. Of course, it immediately worried us both, so I visited my primary care doctor and she referred me to an oncologist, who quickly scheduled an ultrasound of the lump. Thankfully, the oncologist did not believe it was cancerous, but she did send me on my way with a prescription of Cephalexin (an antibiotic that I had never taken before). She thought that maybe the swollen lymph node they found was due to an ongoing infection. In hindsight, I should have paid attention to the word “infection”. When I think of all the doctors I have seen over the years, whether as a child or an adult, the word “infection” was often the common denominator. I always seemed to have some sort of infection. So, I started taking the Cephalexin just about 48 hours before that awful day in my office, at age 26, that started this entire health mess.
While I will surely never know when I was infected with Lyme and all of these other coinfections, I can’t help but think that some of these clues foreshadowed things to come. If only I had a time machine to transport me back to the day I was infected, back to the weeks I was sick as a child, or even back to when I had the option of not taking that Cephalexin just a couple of days before things all went downhill. In most of the literature I have read on autoimmune and dormant infectious disease, there is almost always a trigger, be it severe sickness, an accident, PTSD, or a multitude of other things. I will always wonder if this bug laid dormant for all these years just waiting for a virus and/or antibiotic to tick it off and fuel its fire.
TOTALLY TICKED OFF 