Hey, I didn’t want to hold out on you guys any longer about how I did through the first round of antibiotics. I also wanted to share all the positive things that have happened since my last post, as well as the treatment details going forward. First, to fill you in, for 8 of the last 10 weeks I was on a low dose course of antibiotics. Contrary to my own concerns, I continued to progress practically unfazed by the antibiotics. This was a good sign that when the time comes, I will be able to tolerate a stronger antibiotic regimen. The only notable side effects up to that point were on my digestion. Fortunately, I have been able to maintain my nutrient rich, high-calorie diet.
Overall, I look back on the last couple months favorably. There have been a lot of milestones but a number of challenges as well. The most significant change has been in my brain’s ability to accept more external stimuli. This has allowed me to do things like surf the web, listen to music/podcasts, and watch TV shows/movies for longer and longer periods of time. It also keeps me from being overwhelmed when I am in crowded places with lots of noise. My brain’s ability to conceptualize and process information efficiently has been a little slower to regenerate. But overall, my mental abilities to read, write, type, and converse with others continues to improve.
Physically, I continue to get stronger. I am walking and standing more and subsequently becoming more independent. Psychologically, the pieces are starting to come back together… I’m just not certain they’re in the right order. Emotionally, I’m about as steady as a roller coaster, but I’ve been trying to put my hands in the air and enjoy the ride. Socially, I am becoming more confident in the presence of others, especially when others bring presents. Romantically, Netflix remains the closest thing I have to a significant other. In all of these aspects, I strive every single day to hit that sweet spot between pushing my limits while not overdoing it. Finding that sweet spot may be my single greatest challenge in my path to health, along with self-control and discipline.
One great thing that has happened since the last post is that my apartment complex is almost complete. All summer it was being renovated, and we were forced to come in and out of the back, a distance too far for me to walk. Last month they finally reopened the front. So I can walk in and out of my building and don’t have to bring the wheel chair up anymore. My mom just picks me up and drops me off at the stoop, like your typical, dependent, unemployed, college-dropout son!
Luckily, I have been able to get out every few days, going to a variety of restaurants and stores. Since restaurants generally entail a lot of sitting around, I can walk in and out, no problem. Stores, on the other hand, require a lot of standing around. So in that respect, I am still confined to the wheel chair (well, for the most part). Sometimes I get up when I want to try on a coat or look at something. I occasionally wonder what people think when I randomly stand up. I am often tempted to act surprised and yell “It’s a miracle!” as if I had suddenly regained use of my legs in the middle of Target. But I have yet to work up the courage to pull that charade off.
One courageous thing I did accomplish was venturing to the theater with my mom. It might seem silly, but it was a big accomplishment considering movie theaters are quite intimidating to me. Between the heavy bass and ridiculously high volume, it could create an extremely stressful environment. The film we watched was called Arrival. Ironic, considering about ten minutes in I was contemplating departure. The movie was drastically more thrilling and anxiety-inducing than I had anticipated. But I remained in the theater, chewing some gum to help calm me down.
After the rocky start, I actually ended up enjoying the movie. The cool thing about AMC Yorktown is not only do they have those comfortable lean-back seats, but you can also order food and drinks throughout the movie! About midway through, I treated myself to a pair of sushi rolls. Ahhh, movie theater sushi, about as good as gas station hotdogs! Overall, it was a good experience, and I am super excited to see other movies there, now that I know I can stomach it (the movie I mean, not the sushi).
A couple weeks ago, my mom got me this awesome electric scooter as an early Christmas present! No, it’s not one of those sit-down scooters you see your elderly neighbor in, zooming through your local supermarket. It is a regular, stand-up one. It is actually light enough that it folds up so you can carry it. With the scooter’s 5-mile range, I now have so much more room for activities! The theater, the entire mall, the grocery store, my pharmacy, and even my therapist are all within scooter distance. As I am able to stand up for longer periods of time, I will have an abundance of choices to occupy my time, as well as opportunities to become more independent. That is, until I can start driving again… Is spring too optimistic? I hope not.
About two weeks ago I started the next round of antibiotics, which I creatively termed “Round Two”. This round entails increasing the dosages of the two antibiotics I am currently on, as well as mixing in a third. Since I started “Round Two”, I can already feel the antibiotic’s side effects, or the *herxing, kicking in. For me, the herxing primarily emerges as a deep burning down my back or spine and throughout my head and is often accompanied by an increase in fatigue, brain fog, and a slew of other symptoms. I know it may seem counterintuitive, but it is a good sign that the bacteria are being killed off. The herx reactions, though mild now, will almost certainty intensify down the road. My doctor is confident that after 2- 4 months on this antibiotic protocol, I will be ready to begin their more aggressive “pulsed antibiotic therapy”. Antibiotic Therapy? I seriously hope I can prove that not to be an oxymoron.
With herxing in mind, it’s important to note that it won’t be all sunshine and rainbows on my way back to health. I wanted to keep this post relatively optimistic by focusing on the positives and accomplishments. For my next one, I am planning on writing about the struggles, confusion, adversity, and overall hardship of my situation. I believe I would be remiss if I only shared the highlights and milestones on my way to recovery. That would paint a far too bright and inaccurate picture of my experience with “Chronic Lyme Disease”. I’ll admit that it may be difficult for me to share the darker side of my story, but without the darkness, what appreciation would we have for the light?
Lately, I have been making more of an effort to be appreciative of how far I have come. I am especially grateful that I have not suffered a panic attack in a really long time. I do still consistently battle to suppress panicky thoughts that could spiral out of control and turn into a panic attack. But I now have a number of techniques (and let’s be real, medications) to aid me in that endeavor. Unfortunately, there are still a number of fears that previous sets of panic attacks have cemented in my brain for what I once believed would be a lifetime. The pervasive influence of these fears sets the stage for the panicky thoughts, along with my anxiety. Remarkably, every time I force myself out of my comfort zone, I seem to be chipping away at these fears. After each successful encounter, my confidence grows. Today, I am radically more willing to confront my fears, and I truly believe that there is a future where these fears no longer hold the reigns to my present.
Going forward, I must do my best to help my body endure this next round of antibiotics. I am hopeful that I can tolerate “Round Two” just as well as the first. It will be a long journey back, but my progress thus far is promising. By my gauge, I would put myself at about 29% of a normal functioning adult, up from 19% in my last post. But I would take those numbers with a grain of salt, because the weeks are so up and down that it is really hard to get an accurate perspective. As always, I will continue to try to reach out to friends and family when I am feeling up to it. For now, here is another joke and quote.
Did you hear about the butcher who backed into the bacon slicer?
He got a little behind in his orders.
“The reason we struggle with insecurity is because we compare our behind-the-scenes with everyone else’s highlight reel.” – Steve Furtick
*Herxing is an immune reaction that occurs when dying bacteria release large amounts of toxins into the blood and tissues. The body struggles to eliminate the toxins fast enough which exacerbates the symptoms being treated or creates symptoms of their own. The important thing to note is that worsening symptoms do not indicate failure of treatment; in fact, usually just the opposite.