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My Lyme Disease Story

Growing up in Pennsylvania, Lyme disease was something I had always known about. However, before I got sick, it was just that disease you get when you get bitten by a tick. We’re taught that it’s hard to get and easy to cure, so why bother worrying about it. So other than the gross part about having a tick stuck in you, I never really thought much about Lyme at all.

Then, somewhere around 8th grade, things started to change. I had trouble staying awake through class. I couldn’t concentrate on my work. I had this eerie feeling of not being “all there”, of being stuck in a fog. Teachers started pulling me aside to either ask if I was okay or to give a stern pep talk. One even accused me of allowing myself to sink down to a “mediocre at best” level among my peers. What they didn’t know is, I was trying SO hard. I couldn’t understand why everything seemed so much harder for me. Why was I always so tired? Why did my joints always hurt? I can remember asking my mom, “Does everyone feel like this? Does everyone else manage to live with this level of pain?” And somewhere along the way, I convinced myself that I was just mentally weaker than the rest. So, I pushed myself to the point of exhaustion. Again and again and again.

I put everything I had into school and sports through middle school, high school, and college. I wanted desperately to be a normal, energetic teenager. I’d do as much as I could for as long as I could, then I’d collapse. I was always getting sick. I had to take weeks off of school at a time. And out of the 20+ doctors I saw, none of them could tell me what was wrong. Some threw out words like Lupus, MS, ALS, Rheumatoid Arthritis, Fibromyalgia, and Chronic Fatigue Syndrome. And quite a few more said nothing was wrong at all. It was all in my head.

I can’t tell you how devastating and mentally destructive that is to hear. To be fighting so hard to stay strong and keep going, only to have someone tell you’re making everything up. When you’re told you’re a liar enough times, you start to believe it. So I gave myself a pep talk, and told myself yet again to stop being such a wuss, and decided to go into my junior year of college full force. And this is where my life took a drastic turn.

I recently read a quote that says, “Listen to your body’s whispers before they become screams.” And boy, do I wish I had. My fatigue started getting out of hand. I would have to sit down to brush my teeth. I had to take breaks and sit on the edge of the bathtub during showers. I was becoming forgetful, and my thoughts were always jumbled. My hair started falling out. My eyesight started deteriorating. I had tremors in my hands. My fine motor skills were gone. I had severe nerve pain in my legs. They felt like they were on fire, all the time. My hands and feet would go numb and turn blue. My hearing became so sensitive that loud noises literally made me cry. My joint pain became unbearable. And my stomach and GI tract went on the fritz. And that last monster would turn out to be the one that did me in.

I started waking up to the worst stomach pains of my life. That was how my mornings started, every morning. And more often than not, I would end up vomiting. With the vomiting came nausea. I would spend hours laying on my bathroom floor in the fetal position hugging a stuffed animal and trying to distract myself with Netflix (I called these “Nausea Parties”). The nausea got so bad that I couldn’t eat. I lost 15lbs in two weeks. I kept trying to keep up with school, but ended up having to take a medical withdrawal from the university.

That was one of the lowest moments of my life. I felt like a complete and utter failure. My parents kept searching for answers, but every doctor’s visit was a dead end. The more head scratches and blank stares we got from doctors, the more sure I was that everything really was in my head; it was all psychosomatic. At one point, I even desperately begged my parents to send me to a psychiatric hospital to get help. I didn’t care about the stigmas or what people would say, I just wanted to get better; and I was terrified of what I would do if I didn’t. However, I was luckier than most to have a family member who also happened to be one amazing doctor. She never gave up on me, and kept searching until she found a diagnosis. It was this doctor that suggested we revisit Lyme disease.

            See, about two years before all of this during another particularly bad flare up, the first part of the standard two-tiered Lyme test came back positive. However, once we got the second part back, I was given the news that they only found 3 bands associated with Lyme in my blood, and the CDC only considers a positive Lyme test to be 5 bands or more. Therefore, I could not be diagnosed Lyme disease.

            This was my first run in with the controversy that surrounds Lyme. And honestly, the more I learn about it the more confused I get. But I’ll try my best to explain it to you!

First of all, the testing for Lyme Disease is highly inaccurate. So much so, that it misses up to 54% of people with Lyme, and, because of this, people end up suffering for years, getting sicker and sicker while the bacteria flourishes. Not to mention that the nickname for Lyme is “The Great Imitator.” So unless you have the telltale bull’s-eye rash (which by the way, only a small percentage of people get), physicians often misdiagnose patients. To learn more about the testing controversy check out this article: https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/ (it explains all the sciencey things way better than I can).

When it comes to the disease itself, there are two polar opposite schools of thought among the medical community. The Lyme Disease Association explains it as:

“One viewpoint espouses that Lyme disease is hard to catch and easy to cure. Its proponents promote short-term antibiotic treatment regimens (a few weeks) that often are not effective for those who have been diagnosed with Lyme disease. The patients sometimes remain symptomatic after that course of treatment. When that happens with other diseases, patients are often given longer courses of antibiotics. However, those holding this viewpoint, including the IDSA (Infectious Diseases Society of America) and insurance companies, have proceeded to take strong actions to prevent Lyme patients from receiving any more antibiotics. Their claim is any remaining symptoms are “autoimmune” in nature, not persistent infection.

The other viewpoint is held by physicians who are treating chronic Lyme patients. They recognize that scientific research shows that even after longer term treatment (more than the few weeks) with antibiotics, some of the Lyme bacteria can survive (persistent infection). They also recognize that although some symptoms can be the result of an autoimmune cascade, that cascade is driven by a small amount of bacteria that remain after treatment. These treating physicians have found that repeated courses of antibiotics and combinations of antibiotics (which attack in different ways) often help patients to become self sufficient and regain functionality in society.

An argument used against long-term treatment is that prolonged antibiotic use develops resistant bacteria. That claim has not been proven. In fact, antibiotic resistance generally develops as a result of improper usage of the antibiotic–not taking enough, thus the admonition to patients to “take all of your antibiotics that are prescribed, do not stop taking them when you feel better.”

Most treating physicians, patients, advocates and many others feel vested interests control Lyme disease and set the limits for what the disease is, how it can be treated, how it can be tested for, and what science can be published on Lyme disease.”

            Trust me, friends. The deeper you go down the rabbit hole, the more suspicious it gets. Two great documentaries came out a few years ago called Under Our Skin and its sequel titled Emergence that shed light on the Lyme controversy. Everyone should watch these at least once, especially people living in epidemic areas.

You can rent or buy these here.

Thankfully, my family doctor was able to get me an appointment with a LLMD (Lyme Literate Doctor). This was such a turning point in my life. For the first time in a long time, I felt like I had hope. For the first time in a long time, a doctor referral left me in happy tears instead of heartbroken ones. After describing all of my bizarre symptoms to my LLMD, he nodded, looked at me with empathy, and laid out a rigorous treatment plan. Within 3 months, I started feeling like myself again. Around month 6 things really started improving. I had more energy. I could make it through a whole shower without a break! My nerve pain disappeared! The nausea was gone! My tremors were gone! It was amazing. I feel like I’m finally able to take my life off hold and start living again.

This experience has left me stronger, tougher, and more appreciative of the little things. It’s made me a happier, more carefree person. But most importantly, it’s taught me to never, ever, ever judge a book by its cover. You never know what someone’s going through or what battle they’re currently fighting. Some disabilities/heartaches/pains are invisible to everyone but the person suffering them. Be kind. Always.

I hope you’ve learned a thing or two from this lengthy post! And I hope to see you at Charlotte’s Trove on Saturday, May 27, to take our “Take a Bite Out of Lyme” challenge, and help us raise awareness and money for research for Lyme Disease!! See you at the Trove!