I’m going to let you in on a secret. A stupid little thing that makes me laugh a little through battling Lyme Disease…
When I was applying to colleges, I had a “dream” school here in California. As a girl who never wants to get her hopes up, I wouldn’t admit it, not even to myself. When I didn’t get in, I have to admit that it sucked. I thought it was because I didn’t have a “story” or at least that is what you are told a million times by the college counselors… you need a story to tell, and I guess I didn’t have mine yet! I ended up going to another great school, NYU, and this whole Lyme situation happened. I keep telling myself that it will get better, that it happened for a reason. Here’s the reason: I get the opportunity to share with other people that may be suffering, a beacon of hope. A light at the end of this winding tunnel. Unfortunately, I have to go through this whole Lyme thing, but I know it’s going to get better. This journey here, is my story, and it’s not for a stupid college essay, it’s for myself and people that I am trying to help. Not just those with Lyme, but those trying to understand it.
The CDC data reports that 300,000 cases of Lyme Disease are reported each year. Of that 300,000 each year 40% of the patients experience long term problems, also known as Chronic Lyme Disease. So why aren’t we doing more to help it? And, why is it so hard for our doctors to admit that it’s a crucial issue that needs to be addressed, that they need to be educated on? Maybe if they do an episode on Grey’s Anatomy about Lyme Disease it will spark more of an understanding or an interest, television is our outlet to educate now. It could also just be my dream, combined with the fact that I’m way too invested in the show!
So here goes, here’s my story so far…
I laid on the pediatrician’s bed staring at the dull, stucco wall and said the alphabet over and over in my head to keep myself awake. I didn’t want to pass out, because I knew if I fainted from the eight vials of blood the nurse was taking, my mom would probably pass out as well.
The day was October 13th, 2016.
As an NYU freshman only two months in, I had spent my days running myself ragged. Hours in the calculus classroom listening to teachers teach equations that I didn’t [and will never] understand, five hours in the library writing a paper about theories that didn’t make sense to me because they’re about people who lived a bajillion years ago, and discussing theoretical theories about the great unknown (I relate more to concrete evidence than the theories of theories). My point is, I spent time doing what a kid my age all over the world was doing: spending hours working on papers and studying for Freshman classes that may have no application or seeming relevance to my future. I was “normal”, or in other words, re-inventing myself at college; thinking I was smarter than I actually was and buying a fake ID to be able to get into bars and clubs that honestly, I was probably never going to go to.
Days and weeks of this went on and I felt completely fine. I felt like myself. Overworked and tired, but my health seemed fine. On October 11th things started to change. I remember just walking around and being freezing from the inside out. I felt like my internal body temperature had gone down, and I was pretty sure it wasn’t just the sudden fifty degree New York City fall day. Two days later I walked from my calculus class to a yoga class to exercise and try to get warm. I couldn’t.
I walked back up the block to my dorm room and took a hot shower, thinking that if exercise couldn’t warm me up then perhaps some hot steam, might. That is when I felt it, for me it was the first signs of Lyme Disease. Of course, then, I had no idea what was wrong with me. I went to wash my hair and I realized that my fingers couldn’t hold the shampoo bottle. My body started shaking, my bones felt like they were splintering, and my head started clouding up. I felt like I had thirty minutes to get to someone, before something really bad would happen. Never in my life had I experienced such pain.
I walked uptown about twelve blocks, to meet my parents and sister who happened to be in town, sat down in a chair and told my mother that I needed to go to a doctor. We left immediately, jumping into a taxi. That’s how we get to the beginning of the story, and as I write this, essentially the beginning of what I’ve been told is a “journey”.
As I left the pediatrician’s office after giving blood, getting examined and having been told that it was probably just a virus, I knew something else was wrong. I started connecting the dots, realizing that I had come into their office the week prior, after spending time in Long Island, feeling itchy all
over and with three bug bites: my right ring finger, my left bicep, and my neck. I knew they weren’t mosquito bites, I wouldn’t have gone all the way uptown to the doctor with a simple bug bite. At that time, the pediatrician in the office gave me a prescription for a cortisone-type cream, similar to a Benadryl cream, and I was on my way. The itching subsided within a couple of days and I hadn’t thought of it since.
I had also experienced symptoms of a cold, but I rarely get sick. It all seemed very random, very out of place for me, but many times that is how Lyme shows its symptoms: disguised in the form of other illnesses.
Only after going to the doctor on October 13th did I realize two things: First, why didn’t the doctor ask where I had been in the recent weeks and days prior to the bites? I would have answered by saying I had spent time on eastern Long Island, one of my absolute favorite places in the world but, an area known for ticks, mosquitoes, and sand flies, and thus Lyme Disease [it is most commonly known that the disease is spread through ticks, but Borrelia burgdorferi which is the bacteria that agents Lyme, can be found in many different insects]. In a small percentage of Lyme patients, a bullseye rash appears, almost a white circle surrounding a red bite. I didn’t have this, rather I had splotchy, red marks surrounding the bites (as you can see in the photo above).
When I was given the diagnosis of Lyme, I was familiar with ticks being the cause of the disease. I tried to think back, convincing myself that I may have seen what I thought may have been a piece of dirt on me and brushed it off, but that was just me trying to blame myself for something that I couldn’t stop from happening. Something to convince me that I could have stopped it from happening. But, the truth is, I couldn’t.
I was never a kid who put on bug spray. The mosquitos would always bite my legs and I found there to be no difference with Off spray besides the disgusting smell. I never thought that bugs could cause such harm, for all I knew they made you a little itchy. Nothing a bit of Benadryl Cream couldn’t fix… I was wrong.
The second thing I realized on October 13th is that I probably shouldn’t be going to a pediatrician’s office anymore. Our society fails to realize that there are more complex and trivial medical questions that can happen to a child or teenager other than a sinus infection, strep throat, and the stomach flu. I have learned through this journey that it is so important to have educated professionals on your side. This doesn’t mean that your physician needs to know everything about everything in the world, but it means that they know when to refer you out to someone else because what they are dealing with is not their area of expertise. By no means did my pediatrician do either.
For a doctor to admit when they want a second opinion or need another perspective or a specialist isn’t a weakness, it actually helps to get the patient healthy faster, and trust me, we will thank you in the end. If I had been referred to a Lyme Literate doctor, or even told that they exist, instead of being told by one of the physicians in the pediatric practice that “lyme was murky… and we doctors are only human” I might have been better after four weeks of treatment. Instead of the revolving door of the pediatrician’s team of practice investigating the abnormalities of my labs, they could’ve told me a Lyme Doctor existed. They made the choice for me, instead of educating me on my options, so is that an individual practice choice, or is that a reflection upon how our healthcare system operates? Either way, my life is different now because of a decision made for me, not by me. It has now been four months. Yes, doctors are human, but it is their responsibility to be diligent in the treatment of their patients. It is their job to do what they can to help you get better.
So why again are we talking about all of this? After I left the pediatrician’s office, we had to wait through the weekend until the blood work was reviewed. A few days later, on October 17, 2016, I was diagnosed with Lyme Disease. One of the most complex part of this disease is the diagnosis, because it causes so many different symptoms in a person’s body sometimes doctors don’t think to test for Lyme. Lyme Disease is not always easily detectible. Many patients go for months or years getting misdiagnosed with illnesses such as Chronic Fatigue Syndrome, Multiple Sclerosis, Depression, Arthritis, etc. as Lyme can take many forms in the human body. For many doctors, it isn’t routine when a patient comes in with what they think of as “aches and pains” to take a Lyme test. Once you do test for it, if it has been living inside of the host for a long period of time, there are more tests than just one simple blood test that need to be done to confirm Lyme.
After I was diagnosed, I was prescribed Doxycycline, the most commonly used antibiotic taken at the beginning of Lyme Disease, there are two reasons why:
- What it technically does, is when the disease jumps from cell-to-cell, otherwise known as cell-to-cell transmission, as any vector-borne disease does (basically an infection caused by a bite), the antibiotic has the ability to fight the infection during it’s transition from cell-to-cell. Why we take the Doxy for such a long time (three weeks according to some doctors, four weeks according to others) is that Lyme can live for a while inside the cell and we need to catch them in their transitions.
- Most pediatricians, physicians, and infectious disease doctors are not Lyme Literate doctors, meaning that they are not fully educated on the treatment of the disease or how it spreads. Obviously, we don’t expect one doctor to know about everything, but we do expect each doctor to help us get to the people that can give us the best treatment possible. In my case, and so many other cases, that is not what actually happens. The doctors believe that if the Lyme Disease doesn’t disappear after a month of Doxycycline then you must have something else wrong with you. This is not true, but from the education I’ve gotten over my months of being sick, I’ve learned unfortunately due to politics, pharmaceuticals, power, and money [like everything else] Lyme is manipulated to be passed over by so many doctors because there isn’t one direct route to a cure. This is actually ironic because it’s exactly what I was going to school to study.
Lyme Disease is an established disease but it goes hand-in-hand with a host of other co-infections. In other words, when you are bit by an insect and get Lyme there are many other infections that you can receive from the bug as well. Those little buggers! If you don’t find and treat the co-infections as well, the Lyme won’t end up being well-treated. Lyme Disease is almost like a smokescreen for doctors, they see the lab come up positive and convey to the patient that they have Lyme Disease, just like that. That’s what happened to me. My mom got a phone call from the pediatrician, they told her to pick up some Doxycycline for me to take for three weeks, twice a day. But it had been weeks and nothing had changed.
Little did I know this was just the beginning of my journey. Now I have been on four cycles of six different kinds of antibiotics, and my entire drawer in the bathroom is filled with supplements. Charcoal, Turmeric, vitamin D, Magnesium, things I can’t pronounce the names of, and droppers of herbs that taste like rotten food. Google has been my best friend, although sometimes it gives more information than I really want to read.
A week ago I had a procedure to place a PICC Line, which is basically a tube that is placed in my arm so that I can receive Intravenous Antibiotics without being stuck by a needle everyday. For the first time in four months it’s cleared up some of my brain fog, and hopefully this protocol will bring me closer to my cure.
I spend my days binging Netflix series, Mad Men specifically, probably like every other teenager out there in college is doing. I am also way too involved in Mariah Carey’s life, she dumped her billionaire fiancé for her cute backup dancer, just so you know. I crave Ben and Jerry’s Psish Food Ice-Cream, but can’t eat it because sugar makes Lyme multiply. And, I have spent lots of my time in saunas and massages (two things I hate!) to release the toxins that build up when the Lyme is killed by the antibiotics.
I’m not going to say I’m not in pain, I have excruciating joint and muscle pain. I stay in bed some days watching Netflix and Chill(ing with my heating pad). I have what I call a “brain fog” I lose words, forget what I’m saying sometimes, and can’t totally think straight. The running joke in our house right now is that I can never remember the word for a vacuum, but that’s probably because my brain doesn’t want to clean up my room! Sometimes I focus more on my body’s pain and how to soothe it, than what someone might be talking to me about. I get a headache when the pain gets unbearable, and usually the only thing that helps me get better is sleep. But, then again most nights I am restless and can’t sleep. It’s a cycle, and I think part of figuring out how to get better is figuring out how to break the cycle.
Another part of this disease for me is learning to understand, know, and acknowledge that it is okay to admit to the pain. As a dancer and a perfectionist it’s hard to know that my body doesn’t want to do what my brain is trying to tell it to. I haven’t exercised in way too many days, and I’m taking a leave from college because my brain can’t put together all of the information and research I need, to be on a college level.
I’m telling you my story in the hope that it can help someone. To raise the understanding that Lyme Disease IS a Disease, and one simple antibiotic isn’t the cure. We need to uncover and demystify this disease and we need to make it relevant.
This is my story as an 18 year old, four months into knowing I have Lyme Disease, fully aware that some people suffer for years. My story as a girl still looking for the light in this time, which I know is out there. I’m sharing the little bit of knowledge that I know, because I know that it’s really hard to find, and no one should have to go through what I have been going through. I’m sharing this as a girl trying to explain what is going on to my friends, hoping they know it’s all going to be okay, it’s just going to take time. My story as a girl on leave from NYU not quite sure if I’m going to be able to finish my first semester of freshman year, but I’ve finished 2 credits! Woo! My story as a girl who wants to get back to her piano and write songs again. My story as a girl willing to admit that this all sucks.
I know there are a lot of diseases that cause different debilitating situations to our bodies. Some we know more about than others. But for me this is my journey, your journey, and ours together. I don’t mean just the people suffering from Lyme or family members experiencing it along with them. I mean that it is all of our responsibilities to be educated and to help as it has become more prevalent in recent years. Also, remember we are strong enough to beat this, together.
If I’m learning anything from this all, it’s not to take anything for granted. It’s to love whatever your body is able to accomplish, because it truly is amazing. It’s to love your brain and all the brilliant things it can do in a day. It’s to know that it’s okay to be upset about it all, as it’s really frustrating, but your strength is what will get you through. It’s knowing that resilience is key, even when the pain is so uncomfortable. It’s knowing that we can get back to ourselves if we find what works. It’s knowing that your beautiful life matters to people, so work up the strength to get through this so you can be able to conquer the world.
Originally published at medium.com