What is Lyme Disease?

For quick facts and information about Lyme disease, please check out the resource page on the LymeLight foundation's website. They are an excellent organization, and I'm grateful for the support they've provided me with to help me access treatment.

My Experience with Lyme

I've had chronic Lyme disease and co-infections since I was 6 years old.

On the Tuesday of my last week of kindergarten, I woke up in the middle of the night, screaming. I thought my leg was on fire. There was a burning pain throughout my entire right leg, and I couldn’t stop crying. To this day, I still haven’t felt a pain as unbearable as that.

I was in pain and feverish, so we went to the E.R. that night. The doctors ran tests, checked my blood (which came back normal), and told my mom I likely had a viral infection and it would go away. They sent me home thinking it would clear up on its own. I wasn’t able to walk.

The pain and sickness didn’t go away, but Thursday was my last day of kindergarten and I was insistent on going. I begged to go because I loved school and had a performance I’d been practicing for and wanted to participate in. But I still wasn’t able to walk and we didn’t know why. My mom took me in a stroller. The pain didn’t go away.

That night, the pain worsened. I started screaming and crying again, so my mom took me back to the E.R. They checked my blood, which showed signs of infection this time. I went through blood test after blood test and developed an extreme phobia of needles due to the sheer amount of times that I was poked. I was only 6 and had small veins, so every time they had to check me, they had to insert the needle multiple times. It was one of the most uncomfortable and painful experiences of my life. I started yelling at all the nurses because I was so tired of them poking me. They had to call in a NICU nurse to do my IV, and when they were finally able to get a good blood sample, they saw signs of distress.

An emergency surgery revealed that I had a septic hip from an unknown bacterial infection. After the surgeons drained out as much of the infection as they could, one of them approached my mom. “It was really bad in there,” he said. He was extremely shocked. “Everything was rotten.” He made it clear that if they had waited any longer to operate, I probably wouldn’t have made it.

After the surgery, I was in the hospital for about a week. Anyone who entered the room that wasn’t family wore big white HAZMAT suits to check on me because they didn’t know what was wrong with me. I remember that the doctors and nurses weren’t always very kind. It was a really frightening experience to me as a little kid. My leg still felt like it was on fire, and my mom was the only one who knew how to pick me up and carry me in a specific way that wouldn’t cause any more pain.

After a week, they sent me home with a PICC line of Vancomycin, otherwise I would’ve had to stay at the hospital for over a month. For six weeks, every four hours, my mom had to change my PICC line dressing. She would get up in the middle of the night and everything. Nurses would come to my house too. Those ones were very nice; one of them gave me a koala stuffed animal that was my very favorite for a long time after that. I still have it.

Vancomycin is one of the strongest antibiotics ever created. It was really harsh and can cause a lot of side effects. It made my hair really thin, brittle, and frizzy. It also took away my curls. I used to have really curly hair, and I loved that as a kid. I had a lot of bald patches during my later years of high school; only just recently has my hair started to heal and return to its normal state, and I’m 20 now.

It was a really difficult time. In addition to recovering from my surgery, I had to relearn how to walk again due to the effects of the infection. I was in a wheelchair for quite a while.

My Lyme Diagnosis Journey

The doctors couldn't figure out what happened or why, so they dropped my case without a diagnosis. (I didn't get my Lyme diagnosis until 2021, when I was 17). The antibiotics I received through that PICC line did help me feel better for a while. I started walking again.

But eventually, the symptoms started coming back.

Because they didn't diagnose me with anything, I wasn't able to get proper treatment. If Lyme is not treated properly and promptly when it is acute, it will turn chronic. Once that happens, treatment can sometimes put it in remission, but it will never fully leave the body. I will be managing this for the rest of my life.

I couldn't walk for about a month after the initial infection and relied on a wheelchair. Due to the way Lyme works, my symptoms came and went until I was in about 3rd grade, so I was in and out of a wheelchair for a while until it went into remission.

Relapse and Leg Surgeries

When I was in 6th grade, I got a really bad concussion. Head trauma is one of the many things that can trigger relapse in patients with Lyme disease, and due to the timing of the symptoms that eventually reappeared, we believe this is what caused my Lyme to come back.

It started coming back when I was in middle school. It weakened my leg muscles so much they grew crooked. My right leg (the one that had the initial infection) turned so crooked that my toe was completely facing my other leg. Some kids at school said I walked like a zombie, which was actually pretty funny (and accurate). I also started developing extreme hyper-mobility, loose joints and joint pain, back pain, muscle pain, and frequent headaches, among a long list of other symptoms.

My right leg eventually grew so crooked it began to impact my daily life and ability to function. I couldn’t walk very well or run, and strenuous activity gave me so much pain. My entire spine was misaligned and my back felt like it was on fire every day. To solve this issue, I had a major surgery in 2018 called a right femur derotational osteotomy with internal fixation. They cut my femur completely in half (yes, it was in two pieces), rotated it 45 degrees outward, inserted a titanium rod inside my bone, and secured it all with screws.

Recovery, Ableism, Inaccessibility in Schools, Oh My (I Hate It Here)

This surgery took a long time to recover from because again, my femur was in two pieces. I’ll touch upon this more later, but my peers and teachers were not understanding of this at all and it was a very frustrating experience for me. Most people assumed that I had a sprained ankle since my wheelchair company didn’t deliver the wheelchair that we paid for, so I had to use crutches around my school. Because of the titanium rod in my leg, I didn’t need a cast, so aside from my Frankenstein scars, there were no visual indications that my femur was in two pieces. I cannot emphasize that enough. Two. Pieces. It hurt so bad, all the time. I still get pain near the break sites in my femurs when its cold, when there are any weird weather or air pressure changes, or when I walk or stand too much.

I started my freshman year of high school two weeks after that surgery. Still on crutches. I was on crutches for 9 months, but it took me so much longer than that to fully recover. I still can’t even run, stand for too long, or walk really long distances. And crutches suck, by the way. They give you blisters and bruises under your arms and they’re incredibly inconvenient and exhausting. They pinch and they burn, and you can’t participate in anything fun, and I’d have to carry all my textbooks with me in my backpack because I couldn’t access the lockers (and there were always fights or huge crowds in the locker halls and I didn’t want to get pushed around), so my back was so sore and it was so hard to get across campus, let alone stand upright. I couldn’t even put full pressure on my right leg. It was so painful and frustrating. Relying on them made me feel trapped.

I’m usually a pretty neutral person and I’m easy to get along with, but let me be frustrated and angry for a second: I have severe concerns regarding the intellectual and empathetic capacity of those who assumed that I was using crutches for attention.

Strangers at school would come up to me and tell me I didn’t need them. Guys in class would steal them so I couldn’t get up from my seat. Some of my peers didn’t know why it was taking me so long to heal and were often rude or confrontational about it. Some even thought I was simply trying to get out of P.E.

In classes, I couldn’t stand up and move desks to do group work. One day, one teacher looked at me, smiled, and said “You can get up now.” Similar remarks and passive aggression happened quite often. She’d pass out worksheets to the entire class but would make me get up and receive mine myself. And I’m a nice kid, and I’m shy, and I don’t like being annoying, so I would get up and get them myself, even though it hurt. Because I hate asking for things or being a burden, which naturally comes with a lifetime of medical trauma and the associated invalidation. This was actually such an issue I had to talk to my counselor about it because I was always a really good student and I wanted to keep being a good student; I didn’t want to have to confront my teacher or come across as rude. But the issue persisted so eventually I had to explain to this specific teacher after class one day that I was recovering from surgery, and my femur was again, in two pieces. She said “Oh, I thought you just had a sprained ankle or something.”

It’s funny; she had so many inclusivity posters on her wall.

But I “didn’t look sick,” as I’ve been told my entire life. She “thought.” Accessibility and ableism are still enormous issues in the U.S. public school system and I firmly believe that jumping to harmful conclusions instead of asking simple questions or practicing basic human empathy is actively perpetrating the problem.

Anyway, my school was supposed to explain my situation to all of my teachers, but they didn’t (because my school was so poorly managed), which is partially why a handful of teachers were much less than understanding. The primary issue is still, in my opinion, a combination of harmful assumptions, miseducation, and an overarching lack of basic human empathy.

Again, I did have some extremely kind and compassionate teachers who would ask me how I was doing or if I needed any accommodations and things like that. I appreciated their kindness very much.

It’s also very hard to navigate the hallways of a school where fights are frequent and common in crutches. You get shoved around by crowds. Also, every 6th period someone would pull the fire alarm and I’d have to walk all the way out to the field for nothing.

Because Lyme can weaken your muscles, immune system, and other necessary functions throughout the body, recovery took me a very long time. I also couldn't take pain medication because it made me incredibly sick. I had to cut out essentially 90% of my diet because I had no appetite, most foods made me nauseous, and I started having painful allergic reactions.

I eventually had to have the same surgery on my left leg in December 2020, because it also grew crooked.

Health Decline

My health took its worst turn in 2020, right in the middle of quarantine, and during the recovery process for my last leg surgery. I started having an intense burning pain throughout my entire body. Muscles, joints, even my brain felt like it was on fire. I was practically bedridden because I started having chronic migraines that made me nauseous and sensitive to light, and it was really hard to hold my body upright. Neck pain made it nearly impossible to hold my own head up. I also started having neurological symptoms like intense anxiety, panic, depression, and OCD due to the inflammation Lyme can cause in your brain.

During this time, we visited many specialists who either didn't believe me or didn't understand what was happening. I saw a specialist at UCSF who literally told me that if I ate more salt I'd "stop feeling a little crummy." At some point, a family friend reached out to my mom and suggested that I get tested for Lyme, and after conducting hours upon hours of research, my mom and I realized it sounded a lot like what was going on with me. So we saw another specialist, also at UCSF, who refused to even test me for Lyme because she “knew about Lyme” and “didn’t think I had it.” She jumped to this conclusion after a 20 minute zoom call. I’d never even met her in person and she didn’t even give me the chance to tell her about all of my symptoms.

Another thing to note about Lyme is that it is extremely hard to test for. The standardized testing system is over 40 years outdated and doesn't even test for all the possible strains. The majority of mainstream doctors and healthcare specialists who don't have specific training in Lyme and co-infections will use this test or simply dismiss patients because they don't believe them. Generally, only Lyme literate doctors use modern, effective tests. They also know enough about Lyme to recognize symptoms and give an accurate diagnosis.

My diagnosis journey was incredibly discouraging, disheartening, and invalidating. Even as a child I had teachers and yard duties who told me "it was just growing pains." I was literally in a wheelchair recovering from surgery. In high school, I had teachers who admittedly “assumed I just had a sprained ankle or something” because I was only in crutches, and they treated me like I was faking or overreacting, when my femur was quite literally in two pieces. It was a real issue for me. Also, my school’s administration was terrible. That’s a whole other can of worms.

I had to stop going to school in the middle of my sophomore year because it was too exhausting, synthetic fragrances (cologne, perfume, cleaning products, etc.) give me allergic reactions, it made me sick when other students would smoke or vape (many would do it in class), I had lots of brain fog, there was mold all over campus (which can be a very severe trigger for people with Lyme), and I was simply in too much pain. I was also really frustrated at my school for being inaccessible and not understanding.

Thankfully, I did have a handful of teachers who were kind and understanding. I really lucked out with those select few. You know who you are. Thank you.

It wasn't until I saw a Lyme literate doctor in 2021 that I was finally heard, validated, and diagnosed with something that made sense. I tested positive for two different strains of Lyme disease, as well as bartonella and babesiosis, which are common co-infections. I even had the bartonella "scratch marks" on my back.

Lyme literate doctors are currently the best option for receiving effective treatment. This is because most (not all) doctors don’t learn enough about Lyme in school to properly diagnose or treat it. An LLMD, however, typically has the specialized experience and expertise necessary to help people get answers and find treatment options that work for them. Many are also more open to “alternative” treatments and prioritize the opinions, desires, and comfort of their patients.

Lyme Treatment

Because antibiotics weren’t too effective on me in the past (and they also make me sick), I was put on a naturopathic protocol. There is a common misconception that naturopathic medicine is weaker or not as effective, but I can assure you, this medicine is incredibly strong (and effective, for me!). I have to take it in drops, and if I accidentally miss a few or add one too many, it can make me sick for a few days.

You also have to balance out killing off the bacteria and parasites with adequate detox. Without this balance, you can have something called a herxheimer reaction, which for me feels like a really bad flu, but worse. This is one of the most terrible experiences I’ve ever felt in my entire life (aside from Lyme itself, of course). Every now and then when I run out of a specific medicine or forget to take something, or accidentally take too much of something, I’ll herx, and I’ll spend all day crying and throwing up and wishing my head would stop feeling like it’s on fire. It’s so exhausting to be sick all the time.

It makes Lyme treatment really difficult, because on top of the long list of symptoms, you have to constantly make adjustments to ensure you’re killing off enough of the disease while also detoxing effectively. This makes treatment like a rollercoaster of sorts; there are ups and downs, bad days and worse days, etc. Treatment can make you so much worse before it starts to make you feel better, and that’s what makes it so difficult.

However, my treatment has been extraordinarily effective.

I have never felt this good in my entire life. I still have bad days, but I can walk again. I can read and write again. I don’t have migraines every single day. I go outside. My depression is gone. My anxiety and OCD have toned down so much. I don’t have daily panic attacks. That neck pain isn’t constant anymore. I stopped using a cane in the summer of 2023, and I’ve even gone on long walks and hikes. I wrote a book!

I’m still in pain. All the time. But it’s not as bad as it used to be, and I’m so grateful for that. I feel like I’m getting my life back.

I still hurt, and I’m still weak, and I still have a long road ahead of me, but I’m proud of the progress I’ve made, and I’ve never been better than this.

Lyme Disease and Lone Player

Trigger Warnings: chronic illness, medical trauma, themes of suicide

One of my goals with writing my debut novel Lone Player was to not only raise awareness, but also show the dark side of Lyme disease— especially the mental health effects it can have.

In addition to causing inflammation and neurological symptoms, the toll Lyme has on mental health can be extreme. Lyme treatment is not typically covered by insurance or eligible for disability support, and many people with Lyme can’t work because of their symptoms.

This makes treatment extremely inaccessible, which is what organizations like LymeLight are trying to change. They gave me a grant that allowed me to get started with treatment and I wouldn’t be where I am today without their help. I’m so lucky to be healthy enough to work full time and pay for my own medicine, but unfortunately, this is not the norm.

Lyme is also an incredibly lonely disease. Living with a chronic illness makes it easy to isolate yourself due to the fear of being in pain or letting others down, but on top of that, sometimes people aren’t understanding. Lyme symptoms aren’t always visible and many patients are invalidated by peers and even family members.

The inaccessibility of treatment, the isolation, and the emotional toll of living every single day trying to justify the pain of simply existing for another twenty-four hours can negatively impact mental health.

The suicide rate for people with Lyme is 75% higher than those without a diagnosis.

When writing Lone Player, I wanted to show how unfair it is to have to pay more for the right to be alive when you’re sick. I wanted to show that this world is not built for those with chronic illnesses or disabilities, and accessibility is a huge issue. I wanted to shed light on the poison in our water, our food, the products we use every day—and how they affect those with weaker immune systems. I wanted to show that some people pretend to be fine when they are in fact just the opposite— even if they “look” perfectly okay.

With Margot’s story, I drew upon bits and pieces of my own experiences with Lyme disease and mental health. She is in no way meant to represent myself as a person, but she does represent a lot of things that are important to me. I won’t mention any spoilers for those who haven’t read the book yet, but I will say that Lone Player is in fact tragic.

What happened with Margot is supposed to be shocking. It’s supposed to be dark. It’s supposed to hurt.

I’m sure a few of you readers have probably come to these conclusions on your own from reading Lone Player, but I think it’s important to talk about these things directly. Because there is a real problem here, and it needs real awareness and real solutions.

Lone Player has grown into its own entity. While Lyme is certainly a part of it— and it’s what got Ren and Eddie into all their trouble in the first place— it is about so much more than just one thing. I can only hope that Margot’s experience will speak to those who know or those who don’t know, at least a little bit.

Please remember that there will always be reasons you can’t see.

Thank you so much for being here and reading this. If you have the means, please consider donating to LymeLight to help people like me access treatment. If not, please consider sharing that link with someone else. I think what they’re doing is pretty darn cool.

Xoxo ♥