When you’ve been fighting Lyme disease for over a decade, there’s a lot to tell;
This is my story…
My name is Stacie and I am 24 years old.
When I was 12, my life was radically changed by the single bite of a tick.
Thousands of people every year become infected with the Borrelia Burgdorferi bacteria, better known as Lyme disease. Many people are lucky and the disease is detected in its early stages, where it can be treated effectively with antibiotics. Others are not so lucky, living with the bacteria in their bodies for months, even years before a symptom appears. I wasn’t one of the lucky ones.
I’ll never forget that morning in February 2002. When I awoke, I found my left knee extremely swollen and hot to the touch. I felt achy all over and overall not well. I told my mom that I must have gotten hurt playing basketball, which we both knew wasn’t true; I hated going to the doctors and was terrified of needles. After one week of limping around, my mom had to bribe me to go to the pediatrician; I think I had gotten the “BeaDazzler” and was able to leave school early to see the doctor. I remember arguing the doctor, even contemplated just making a run for it out the door, because he said he had to draw blood! Thankfully, it didn’t hurt!
I had seen the doctor on a Thursday or Friday afternoon since I remember them saying I would have to wait until Monday for the results- and to me that meant forever! That Saturday, the doctor left a message on the answering machine saying I had Lyme disease and some antibiotics were called into my local pharmacy. My dad was angry that the doctor had left this as a message on my answering machine, scaring the hell out of me (and him as well)- and of course being the weekend, there was no one at the doctor’s office to answer. (This was also before HIPAA was strictly enforced-you will never get these messages on your answering machines today; doctors will now give you [or if you are under 18, your guardians] a form where you can choose which phone lines they can call (ex. home, work and/or cell phone), if they can leave a detailed message or simply say to call the office back, etc.)
After hearing that message, I instantly broke down. I didn’t really know what Lyme disease was, I knew that you got it from a tick-but all I knew was that I had a DISEASE. I thought I was going to die; my dad has had Kidney disease my whole life and he was always very sick; He’s had some close calls too. But he is by far one of the toughest people I’ve ever known, so he could handle having a disease-I knew I was not nearly as tough as he was.
What I actually cared about more than dying (looking back on it I try and laugh), was that I was an awkward 12-year old girl in elementary school and kids were going to make fun of me. I suppose I could have approached it a different way, but I was young and scared; the kids teased me and stayed away from me-even though Lyme disease isn’t contagious; but I had a DISEASE and that made me weird. Another fear I had to face was taking the medicine; I never had taken any medicine except ones in a liquid form and was dreading having to take this massive size pill multiple times a day.
After 2 weeks on crutches, my knee finally went back to its normal size; I conquered the battle against the antibiotics ( I was taking Amoxicillin, however most people are prescribed at least one month of Doxycycline- except younger kids) and Children’s Motrin, fallowed up with my pediatrician, plus an infectious disease doctor & orthopedic specialist. They said I could have been bitten as early as age 9-all my symptoms pointed to the third stage of Lyme disease, often referred to as “Late Stage Lyme”. However, the doctor assured my mom and I that, “Lyme disease wasn’t serious and I had nothing to worry about.” The only repercussions I could experience was needing physical therapy for knee, maybe at 30 or 40 years old and some other aches and pains. I was relieved. I thought, when I’m 30 or 40, I’ll be old! Looking back on this of course, I laugh, thinking that these were old ages!
The pediatrician, however, had forgotten to mention (most likely because they didn’t know) that this was only the beginning.
Most doctors believe, that I would be bitten by a second tick and re-infected with Lyme disease & other tick-borne diseases. However, there is no way to tell if it was in fact a new infection or the same one, bringing back both old and new symptoms…
I was 18 years old and starting my second semester of college freshman year. Like any other day, I woke up and started to get ready for school— but when I looked in the mirror, I realized that this wasn’t going to be an ordinary day. I had bells palsy, which turned out to be bi-lateral bells palsy, and is not very common. I thought, “Could it be possible I had a stroke at such a young age- and it happened during my sleep?!” Before going to the doctor, I turned to the Internet and social media, tools I did not have when I was 12. After some research, I found many stories where other people had Lyme disease, were treated with antibiotics, but had developed complications years later. This would be where I started the long, uphill road back to health.
I took a medical leave from college and for the next 6 months, I went to every “ologist” in search of an answer;
I went to a pediatric neurologist, then an “adult” neurologist, cardiologist, rheumatologist, infectious disease specialists, and the list goes on. Along with the bells palsy, I had developed temporary paralysis of my arms & legs that would come and go, burning, numbness & tingling throughout my body, and many other neurological symptoms.
I was told by every single doctor nothing was wrong with me and that I should see a psychiatrist—most of all, they all emphasized, “IT IS NOT LYME DISEASE!” I figured if this many doctors are telling me I’m crazy, than I must be crazy! I started seeing a psychiatrist, started getting myself “back together” and managed to get accepted into Syracuse University and started in the Fall of 2008; (At this point, some symptoms had subsided, but many didn’t- but I kept telling myself they weren’t real); What’s ironic is that this doctor would save my life-after going to all these specialists who told me nothing was wrong, I had convinced myself every thing I felt was just anxiety; this doctor realized I not only had to learn how to acknowledge neurological and physical symptoms I felt, but I wasn’t crazy; I had Lyme disease whether it was a new infection or it was never properly treated in the first place, I needed treatment.
Shortly after I started school, I was hospitalized with bacterial meningitis
Only later would I find out that it was Lyme encephalitis and I had been exposed to Rocky Mountain Spotted Fever & other tick-borne illnesses. Within a week or two, I was released from the hospital and worried about catching up with my school work. The next few years I would struggle to stay in school, since I was sick all the time and constantly in and out of the hospital.
It was senior year of college and I had become even sicker. I should have taken a medical leave, but due to money (and the fact that I was worried the school would not let me return if I had left), I pushed myself to stay in school. I was now 22 years old and the only reason I got through school was that my psychiatrist help me find a Lyme Literate Medical Doctor (LLMD) over the summer. In June, I started receiving IV antibiotics and things were starting to look up; I was a senior in college, with a Peripherally Inserted Central Catheter (PICC).
The picture above is from 2011, where I’m getting one of a series of several PICC lines for IV antibiotics. I had one of the nurses take pictures for two reasons. First, I needed to document for insurance purposes (since Lyme is so controversial and there is no scientific evidence supporting that more than 28 days of antibiotics is beneficial for Lyme patients). Second, my school was extremely strict about absences, no matter how many doctors notes you had–so I figured a picture would have a bigger impact, showing what I was going through while in school.
Unfortunately, things did not go as planned. After 4 months, I developed contact and allergic reaction dermatitis; I now had become allergic to rubbing alcohol and all adhesives, (even paper tape), from the constant exposure. I had no choice but to remove the PICC line so I did not develop complications, specifically endocarditis (infection of the heart). I was devastated but convinced I could finish my treatment of IV antibiotics.
I waited for my skin to clear up, gave it time to heal and about a month later underwent surgery to have another PICC line put into the opposite arm. To my surprise, I developed the same allergic reaction, this time it only took 3 days. Again, I knew it was not worth the risk, and had it removed. I was only able to complete 4 months of my estimated 8 months-1 year of treatment. However, I did feel better and my lab work did show improvements.
A few months later, however, my labs showed that I was (once again) positive for Lyme. In fact, I still met the CDC standards for the diagnosis of an active Lyme infection and always have since I was first tested over a decade ago. Many people do not test positive but still have Lyme disease and/or other tick-borne diseases, since the testing is inaccurate. I decided no more antibiotics, which I later found out was a good decision, since they only killed the good bacteria and made my immune system weaker (in my case).
Once I somehow made it through school, even though it meant pushing myself to the extreme, causing me to become physically ill and mentally drained…that was it. I was sicker than ever because my body could only compensate for so long; it took a long time for me to recover from the 4 years of stress I endured to graduate from Syracuse University, never having the summers to rest because I went to summer school (being sick, I always took the minimum amount of credits each semester, which I could barely handle)!
So here I am. I’m a college graduate, unable to go back to school to fulfill my dream of becoming a Nurse Practitioner, or have a job because the illnesses and conditions I’ve developed from the bacteria affect my everyday life and are often debilitating. Over the years, doctors have diagnosed me with everything from Lyme Arthritis, Fibromyalgia, Hashimoto’s Disease, neurological symptoms such as anxiety, “Brain fog” but worst of all, Excessive Daytime Sleepiness (EDS), Chronic Fatigue Syndrome (CFS), Idiopathic Hypersomnia (IH) and narcolepsy (without cataplexy). I’ve lost count of how many antibiotics, medications and therapies I have tried over the years, all of which have been largely unsuccessful. With my father being a kidney transplant recipient & fighting cancer, my mother working to support the family, but in constant pain after two hip replacements, the cost of medical expenses has had a significant impact on our family. I’m not eligible for unemployment, disability, temporary disability (which is funded by the state), you name it-I am completely dependent on my parents. I began to lose hope of ever being able to live a somewhat “normal,” healthier life, but deep down inside, I knew I was not ready to end the fight against Lyme.
My goal, is not only to be Lyme-free, but to be able to share my story. While my story has been extremely personal and difficult to talk about, my only regret is not sharing it sooner; there are thousands of other people who have their own story and millions more are at risk. It is essential to bring attention to the need of educating the public about this growing epidemic. Not only do I want to educate others about Lyme disease, but to also remind each other we cannot judge others, especially when it comes to apperances. I continue to struggle with being told, “…But You Don’t Look Sick,” because even though I may not look sick, doesn’t mean I’m not- this led me to become a strong advocate for all invisible illnesses too.
Spreading awareness by publicizing my story, I feel, is the greatest contribution I can give.