Notes from the Road: Lyme Treatment
Hello everyone! My name is Aly Shwedo and I was recently welcomed to the More Than Lyme team by my close friend, Chloe! Every few months, I travel cross country to the Seattle area for Lyme treatment. Here are a few pieces of writings that I've compiled from my most recent trip that I was able to scribble down in between the chaos of appointments, IVs, one surgery, detox treatments, and more that encompass the roller coaster that is two weeks of nonstop Lyme treatment.
January 16, 2016. 11:04 am. Somewhere above the United States.
Waking up at 3:30am, leaving the house by 4, picking up a wheelchair from airport check-in, waiting in TSA security checkpoint lines, and sitting in a plane for six hours doesn't feel like my ideal way to spend a Saturday morning. I've had a lot of anxiety building up to this round of treatment. I'm also terrified of heights, but for some reason, today (after a debate with my boyfriend) I had to have the window seat. As soon as the plane was above the clouds, I was in awe. How could I be scared when I got to watch the sunrise from 10,000 feet above the earth? How could I be scared when I saw streetlights and cars in the darkness below, like Christmas lights that someone forgot to take down? How could I be scared when I saw the clouds kissing the air below me? And how could I be scared of the future of my treatment when I'm surrounded by such beauty on the way to the clinic?
January 17, 2016. 9:51 pm. In the passenger seat of our rental car.
This is my third trip to the Seattle area. I'm starting to recognize a few things here and there. Trees, occasional landmarks, street names, this overpass here, the way the moss growth changes on this patch of highway concrete by the season. More and more.
The change of the seasons and the growth of knowledge of the area over time spreads in my mind.
As I recognize more of the external terrain, the more of myself I find unrecognizable. Have I been a stranger to myself all along or have I been consistently changing? Even though some days feel like waking up to a stranger, I enjoy getting to know the me that can exist in this life. I love putting almond milk and stevia in my coffee, drinking fresh pressed green juice, pausing to notice what is going in and around me, and cherishing my friends and loved ones in a welcoming environment. It's all new to me.
I think just an environment change itself is healing and provides the occasional perspective shift that I need. Sitting around in the familiar unfamiliar has done just that for me in 24 hours.
The anxiety still lingers, however. It's the night before treatment begins. For me, it's hard to pinpoint the cause of my anxiety. Whether it's about travel, faith, money, or all of the above, it's there. I haven't found a way to get rid of it. As I sit, writing this, the night before everything begins, I begin to feel a sense of calm. Release? Is it the calm before the storm? Is it genuine tranquility? Or is it just pure exhaustion? All I know is that it's there, and the best I can do is embrace it.
January 18, 2016. 11:56 pm. In bed at our Airbnb.
I keep testing far out of range for heavy metals. This freaks me out. I don't understand heavy metals at all. Previously, I used to treat Lyme with antibiotics and I felt like I knew the complete ins and outs of it. This antibiotic for Lyme, this antibiotic for this coinfection, this supplement for this symptom, and so on. That was familiar territory.
Now, I have heavy metals. Well, I've always had them but we're addressing it now. My mind is racing. I'm looking for some kind of event in my life that would have caused heavy metals to show up in my body. I'm looking for something to blame. Something to be at fault for this.
But there isn't anything at fault here. I haven't worked with any hazardous materials. I only had an amalgam filling for a year and a half. I did everything correctly and still ended up like this.
In our appointment, I told my doctor that I was struggling with these feelings. She told me that sometimes metals can be passed during pregnancy, unknown exposure, or just a genetic predisposition to not being able to get rid of it. Basically, shit just happens.
Well, that's not how my mind works and I went to a bit of a tailspin. I don't know anything about metals, so why are they a problem for me? There always needs to be a cause and effect in my mind. But since there isn't one, I'm forced to shift perspective.
As I climb into my Epsom salt bath, realize that this is what people cope with every day. I remember my tick bite and my bullseye rash, which reinforces my "cause and effect" way of thinking. But those that don't remember a tick bite, those that are born with genetic conditions, and so many others deal with this fear and doubt every day. Shit just happens.
The water begins to cool off, I realize that I can't keep thinking like this. Instead of looking for something to point a finger at, I need to piece together what I've been dealt in life and figure out how to work with it. These questions and feelings, while valid, only make it worse for me. Instead, I need to focus on what kind of IVs I can do, medication I can take, food I can eat, listening to my doctors, and activities I can do to put metals past me. Maybe I don't have to understand everything after all.
January 23, 2015. 9:00 am. In bed at our Airbnb.
It's Saturday morning. I wake up in excruciating pain. I've taken about three different pills to try to go back to sleep and enjoy this time for rest but it just isn't happening.
I'm reminded of pain again. I'm reminded of pain frequently. But after back to back treatments for a week, it's more apparent than usual. I just want sleep, but I don't think that's going to happen. I try to shift my thoughts to the joy I will have today. Seeing friends, eating good food, and maybe a mini adventure. Whatever our bodies can handle. It'll be hard. It'll be good.
January 25, 2016. 9:57 pm. In a detox bath.
I had the most amazing weekend. It's hard to say that after such a long week. Usually you're told to rest and recover and usually we don't. There are benefits to physical recovery- rest, detox baths, mental recoup- but it doesn't feel right for me at this point. My doctors would probably kill me if they read this, but I usually push myself to do things. To see people. To reach beyond my limitations. If it's even only for an hour. I need to seek an escape from Lyme and it ends up being healing in its own physical and mental way. I've decided that covering my hair from the rain, freezing my toes off in the Seattle winter, eating gluten free pancakes, and seeing all of my fantastic friends when I am able are all a part of my treatment protocol. This real, human connection that we all deserve is so important to me. This joy that I am left with after the weekend has more powerful effects than any pill or IV I take. This is what healing feels like.
January 27, 2016. 5:09 pm. In the parking lot outside of the clinic.
I just had my final visit of this trip with my doctor. I feel like I am in urgent need of answers, but I have no questions. Nothing at all. I've been in and out of appointments for so long that I don't even know what to ask. Somehow I come up with half a page of questions.
First, we pull up my food allergy test. I don't have the enzymes to break down fruit and have to completely eliminate this from my diet. I got these results a few days ago and already had the subsequent cry in the grocery store when picking up lunch. We're working on it. It's going to be okay. Fruit free Aly will be possible.
Then we pull out my x-rays. They're not what I was expecting. I knew they would be bad, but not in this way. The fact that I have a hole in my sinuses that leads to my mouth sends me spinning. I full on tunnel vision and my hearing goes out. I have two possible surgeries in the future. Each visit takes me further into the unknown, yet yields another valuable piece to the puzzle.
I'm on the table, muscle tested, and out the door. Protocol for the next few months in hand, I've got this.
January 29, 2016. 9:49 pm. In a towel in bed.
Doesn't it suck when writing inspiration strikes in the middle of a shower? Anyways.
When the last injection is done, your final questions are answered, your bag loaded up with new medications, lab results returned and interpreted, the last drop of IV fluids finished, and you hop off the doctors table, do you ever walk out the door with more worry than when you entered?
I don't mean to be fearful. This is just part of the roller coaster of feelings that I experience with my two week long stays at treatment every few months. At the end I am exhausted. Done. Beaten down. Unrecognizable. It's hard to tell where I begin and the Lyme ends. I feel very "Lyme'd out".
This is not to say that I doubt my treatment. I fully believe in it. Do I sometimes doubt if I have the physical, mental, and financial fortitude to do this for the next few years? Absolutely. These thoughts are terrifying. I don't know who to talk to. I don't even know what to say. How do you simultaneously believe in something and then not believe in it?
It's times like this when I need to just sit down, ground myself, and recognize that everything is fine. This is my protocol for now. And it's okay if it's not what I was expecting. I wasn't expecting anything to begin with. This is my path to wellness and it is now my responsibility to keep up with it. All I have experienced is good results so far.
I think that my worry comes from this deep, primordial fear of what we all know. The fear of uncertainty. I can't stand it. I need timelines. Spreadsheets. Reminders. But those don't exist with this disease. All I can do is look back at how I was last trip and recognize that I am better. I am healing, even if I don't understand how.
January 29, 2016. 4:11 pm. In the spare bedroom of the Airbnb; our final day of treatment.
Can you be relaxed and rejuvenated and also have a migraine the same time? I regret those things I wrote last night. Well, I don't actually regret them. I felt those things. They were truth. Those things were my thoughts. I was overwhelmed. And I still am. Is it too crunchy to say that a lymphatic and a colonic is what I needed to make me feel better? It's true. Maybe I needed the encouragement from my favorite healer and best friend, but it worked.
Those fears from last night are there, but they are calm for now. I am not battling them. We are coexisting in this body. I have more power than them.
My physical and mental body both crave to be at a place where there is harmony. Currently, that isn't possible. That is okay. My mantra for now: this is okay. I've worked to the bone for the past two weeks, pushing myself physically and mentally and it's time to step back and let myself know that I am going to make it through this. This weird, uncomfortable, painful, unique, and sometimes downright awful stop along the way is my path. And no one can walk it better than I can.
Coffee stained teeth, dreaming of the cold, dark waters of a pacific northwest beach. My joints heavy, but my heart the heaviest. I'm filled with the joy of having seen many friends, all that I've met through this Lyme experience. Some I consider my best friends, some I talk to almost every day, and some who aren't even sick. I catch a taste of normalcy. These human experiences are what feed the fire inside of me. They keep me going.
Sometimes pushing yourself if healing. It teaches you your limits. It teaches you your abilities. And most importantly, it teaches you when to rest. I experienced one powerful shift during this trip. After doing a concoction of three different LDA/LDI injections, I felt some energy return to my body. I felt amazing. At nights when I usually crash, I felt like I could keep going. The feeling hasn't been as strong ever since I flew home, but the brief feeling of normality is enough to tell me that this is the right path. Two weeks of treatment isn't easy. In fact, it's the hardest thing I've done in this life, but it shows me that I am capable of pushing myself just enough. Some days it feels impossible, but I've always made it through. Each time I come out mentally stronger. I know that I can survive. In the small act of believing that I can get better, I feel more empowered than ever before. See you again soon, Seattle.