A Lyme Disease Story
The Beginning of Things...
Maybe it happened when we were still kids, as we played in the woods behind my neighborhood, building a fort out of downed sticks and searching for newly-sprung daffodils.
Maybe it was the sixth-grade camping trip that plastered mud to our jeans and trapped brambles on our sweaters as we followed the trail to the watering hole.
Maybe it happened during that month in France, as I rolled logs to be chopped for firewood down the embankment in a medieval forest, my eye growing red and my face beginning to burn as I fell ill from some unseen insect bite.
Maybe it was as simple as playing in the park, on the playground, in the summertime grass in my own backyard…
We heard the warnings from our parents and teachers: wear socks and long pants, watch where you’re walking, be vigilant for ticks. But what could a tiny insect really do, we thought as kids. Ticks don’t live around here, we believed as adults.
We had no idea how dangerous and deadly the germs carried by these insects could be. Lyme Disease was the last thing on anyone's mind...
Caught In The Dark...
I was told I had contracted mono when I fell ill with fatigue, body aches, and swollen lymph nodes in the fall of seventh grade. Since that time, I’ve had mono on at least four other occasions, tested positive for the Epstein-Barr Virus, was told I had the human equivalent of the Parvo-Virus (cue good-spirited teasing from family members), and then, upon the deduction that my fatigue wasn’t going away, was finally diagnosed with Chronic Fatigue Syndrome.
This unrelenting fatigue has haunted me almost my entire life, forcing me to rearrange myself to its whim: I was active as a child, but after my first bout of mono, I spent most of my after-school hours sleeping until my parents woke me up for dinner and homework. Though I was successful throughout college, I scheduled my classes and meetings so that I could take naps in between. And when friends and I planned nights out at the bar, I always made sure to sleep for a few hours beforehand, trying to store up enough energy for a night out in town.
It became a joke among my family and friends—“Susan’s taking a nap again, surprise, surprise” and “who needs coffee when you can have naps!”—but it was how I’d learned to live. Sleep restored me while everyday life seemed to drain me.
It didn’t always seem so bad. There were periods of high energy when naps seemed like a thing of the past, and I tucked my diagnosis of Chronic Fatigue Syndrome in my back pocket and continued on: I graduated from college, traveled abroad, and began my first full-time job. At times, there were surges of adrenaline, and I would think, This! This is what it feels like to be normal, to have energy! That bubbly and effervescent person was who I really was, underneath the tiredness., hidden among the shadow of this fatigue.
But then came the crashes. And each time, it took longer and longer to recover. The fatigue has always been the worst, but slowly other symptoms began to creep up, invading my body and seeking their own attention. In 2009, months of severe upper and lower abdominal pain and endless testing led to the discovery of a collapsed ovarian cyst, which—among the inability to lose weight, the mood swings, the hot flashes—caused the doctors to conclude that it was Poly-Cystic Ovarian Syndrome. I was put on birth control to regulate the hormones and stop more cysts from forming.
I thought, maybe this is the answer.
Instead, the symptoms persisted.
Still, I tried my best to ignore them, and for a while, I was successful. For a while, I believed I was feeling great. And maybe I was—I had so much else to occupy my thoughts and time, after all: I bought a house, I was promoted at a job I enjoyed, I was writing and working on creative projects again…Everything felt like it was falling into place.
Until suddenly, it wasn’t.
In the fall of 2011, the abdominal pain returned in full force. I visited the ER at three different hospitals five separate times in an effort to find some cause or, at the very least, some way to ease the pain. Vicodin helped. But there was no way I was about to remain on painkillers the rest of my life just to have some relief. Multiple scans, ultrasounds, extensive bloodwork, a HIDA-scan, and an upper Endoscopy (“it’s just a sensitive stomach,” my gastroenterologist patted me on the shoulder) were all negative. Still, we persisted until finally my doctor referred me to a surgeon who agreed to remove my gallbladder. Despite no signs of gallstones, the pathology report that followed showed the organ had become severely infected.
Optimistically, we thought this was the end of all my health troubles. I even believed this could explain the overwhelming fatigue I'd lived with for most of my life. After all, this amount of pain causes undeniable stress; maybe I was just tired from dealing with it all. It made sense. And besides, it didn’t matter anymore, right? I was pain-free, with more energy and feeling more like my old self than I’d been in years.
I returned to work with as much enthusiasm and focus as I’d ever had. I bought a treadmill and started a training program with every intention of shedding the pounds and running my first 5K. I began to date again and plan vacation getaways with friends, and I finished writing my first book and began to move forward in making my dream of publishing it a reality.
I thought nothing could take this joy away from me. This…This was how life was meant to be lived. Only, this relatively healthy life was short-lived.
I was so excited to have my life back—to have me back—that I ignored the other signs that began to emerge, believing that the familiar abdominal pain was just leftover healing from the surgery, that the tingling hands and feet, the occasional numbness, the electric shocks running down my neck and into my shoulders, the chest pain and pressure, the severe headaches and dizziness and floaters in my vision were just a nuisance. Maybe I was just sitting in an awkward position, maybe I pulled a muscle while running, maybe I was a little more stressed than I realized…
Then, driving home from dinner, along a major road lit by streetlamps and passing headlights, my vision wavered and I felt my head fall weak against the headrest. I pulled over to the side of the road, shaken, to take stock of myself.
It was my first blackout, thankfully minor and split-second short. It wasn’t my last.
It scared me enough to call my mom. It scared me enough to finally make an appointment with the doctor to explain these symptoms from the past few months. It was enough to start the cycle of doctors’ visits and strange, haunting symptoms all over again.
I cried when my blood pressure was lower than my already normal low, when that, coupled with the chest pressure and neuropathy, caused my doctor to order another round of scans and bloodwork. I cried when those tests came back negative while the symptoms began to get more pronounced, when I blacked out for seconds at home and fainted at work.
Stubbornly, I continued on as best as I could, trying my hardest to maintain a sense of normalcy: I went to work and tried to take care of my dog, Riley, my cat, Mikey, and the house. I continued socializing with friends and even tried moving forward to make a dream—something I’d spent the past four years on—a reality. But I knew I couldn’t keep up with this, not when I could barely get out of bed in the morning, not when my mind was so foggy that I was having trouble recognizing one of my best friends when she was standing right in front of me.
More ER visits, more specialists, more tests. I went to a Cardiologist and failed a Tilt-Table Test. More salt in your diet, they said. All the while, the list of symptoms became longer and more bizarre, and each time I called or went to my general practitioner with a new complaint, their doubt and reluctance to help seemed to grow.
I cried to my mom and dad. Was I going crazy? Was I making all of this up?
The electric shocks running the length of my neck and into my shoulders and spine, the heart palpitations and air hunger, the stuttering and shuffling because my brain didn’t feel like it was connecting to my body, making it difficult to speak, difficult to walk, when it took three whole minutes just to buckle my seatbelt because I couldn’t get my body to cooperate and move…
I wasn’t imagining this. I couldn’t be. Something was happening to my body, to my brain, to myself, and I was terrified.
And then, one minute I was standing at the filing cabinet at work, and the next I felt myself falling. If I weren't so afraid, maybe I would have been embarrassed. But fear has a funny way of replacing all those thoughts, caring less about what others are thinking and merging into concern for your own well-being.
I didn't know then that it was going to get so much worse.
The Vanishing Girl...
Sometimes, when I awaken in the morning, it takes all of my energy just to walk downstairs to let my dog out the back door. Some days, on the good days, I can get dressed and make it to my car and drive all the way to work. Some days, on the better days, I can last for a few hours.
But then that energy slowly begins to drain and everything changes.
Time seems to slow down and a fog layers my mind—so thick that I can’t recognize the work in front of me. Confusion settles in and nothing feels real—not the co-workers who surround me, not the computer blinking in front of me, not even myself. I can barely press down on the keys, and when I lift my hand to sign a document, all I can manage is an illegible scrawl. I try to speak, but I stutter, unable to form the words, though my mind knows them, though internally I’m shouting at myself to wake up, Susan! For God’s sake, just speak! Shout, scream, cry!
My face is pale and ashen, and my eyes are blank when my mom comes to pick me up. She says she barely recognizes me. When she tells me to put on my seatbelt, she watches and waits as I struggle to respond, as it takes minutes for me to pull the strap and click the buckle into place.
She’s scared. I want to hug her, I want to tell her I’m OK, but I can’t. Because I’m not. I’m terrified, too. I don’t know what’s happening to me, and I don’t know what’s happening to my mind.
This was my waking nightmare, and I wondered if it would ever end…
Desperately Seeking Something...
I worked as much as I could during the days and spent the nights with my parents so they could take care of me. Driving was out of the question, as were simple tasks like cleaning my house and taking care of Riley and Mikey. At work, I could barely lift my hand to scribble my initials on documents, and the computer screen became blurry within minutes as fatigue and fog set in.
I cried. I cried from the frustration of knowing there was something very wrong with me and not having answers. I cried from the physical sensations—the burning pain that now ran the length of my legs and the weakness that made it hard to walk. I cried from the fear that I was about to lose everything that I had worked so hard for: my job and livelihood, my house—this home of healing—my reputation and my goals and my dreams for a future that now didn’t seem like a future at all.
I prayed in writing. I prayed in silence. I prayed as my parents and I drove down to see a neurologist at Johns Hopkins, as I failed a balance test in his office, as he sent me for a brain MRI, as it came back negative. I prayed when he diagnosed me with migraines and Fibromayalgia, when even that diagnosis seemed like a dismissal.
I prayed in the middle of the night as Riley snored softly beside me, wondering how it was possible that, in three short months, I could have been diagnosed with six different disorders and syndromes: CFS, Migraines, Vitamin B-12 deficiency, Fibromayalgia, Neurally Mediated Hypotension, and Peripheral Neuropathy.
How could it be? How was it possible that these were separate issues and not symptoms themselves of one specific cause?
It wasn’t possible. Only, no one was willing to put the pieces together to help me find a solution, to save my life.
Keep searching, keep fighting… That voice whispered when I prayed for guidance, Trust yourself.
And I did trust myself. My intuition told me to keep searching, that this wasn’t the end.
So I Googled.
The list of 30+ symptoms and my medical history sitting beside me, I Googled every combination I could think of, bypassing the usual symptom-checkers that have led me nowhere and instead scouring message boards for personal accounts similar to my own.
It all kept coming back around to one answer: Chronic Lyme Disease.
I read books and blogs, medical journals and message boards—everything I could to learn about this disease and how it can affect every system and organ in the body. I learned about the two-part screening process for Lyme antibodies and discovered the controversy surrounding a diagnosis and long-term treatment. Thousands of patients are ignored, advocacy groups explained, because of the inaccuracy of the blood tests used to diagnose Lyme Disease and its co-infections, allowing the pathogens to disseminate throughout the body as it infects the brain, the heart, and the central nervous system.
I called my General Practitioner and asked for the Western Blot test, as is recommended for its sensitivity. She refused and gave me the ELISA test, known for its inaccuracy, instead. I wasn’t surprised when the results came back negative.
But I didn’t give up. I ordered a lab kit from one of the leading testing facilities in the country to get my own Western Blot done, asking my neurologist to sign off on it. He, too, refused. If the ELISA came back negative, he emailed me back, there’s little chance that I would have Lyme. I knew by now that this was the standard answer from doctors who have little experience with Lyme Disease, knew from my reading and research and patients’ testimony that the medical field denies its existence and certainly won’t recognize how debilitating it is.
I wrote back that I respectfully appreciated his time, but that I would continue to pursue the matter on my own.
Then, I broke down in overwhelmed sobs.
The Break Before The Dawn...
I was tired. I was tired of fighting for my life, seeking answers when there seemed to be none and looking for help from those I thought I could turn to only to be turned away.
“I give up,” I cried to my mom on the phone. “I don’t want to fight anymore.”
“Then I’ll fight for you,” she said.
That night, I prayed one last, final prayer.
The next day, I found my miracle.
Are You There God?
I had posted to a message board, asking for the names and numbers of any Lyme-Literate physicians in my area, now aware of the political controversy surrounding this disease and knowing I’d need someone who understood it.
I found so much more.
I awoke to find that someone had answered me, and as I perused the list, my glance kept falling to one name. Trusting my intuition, as I always have, I dialed the number. An hour and a half later, I shed new tears…
Tears of relief. Tears of joy. Tears at finally having someone who recognized all of my symptoms, even the ones I hadn’t recognized myself—the nightmares and vivid dreams, the bouts of manic depression that just the summer before I had asked my mom if I should get checked out, the restless legs at night, the constant ringing and roaring in my ears. It was all related to Lyme Disease and what they believed I had to be a co-infection of Babesiosis.
All those prayers had been answered.
I was almost there.
I just had to keep holding on…
(A selection of personal essays written throughout my journey with Lyme Disease. Hosted on the blog archive.)
Goodbye Alice In Wonderland
"It’s like a repeat of two years ago — doctor after doctor ordering test after test, prescribing medications that make little sense, that serve only as a mask for the pain as they pretend I’m all fixed up and send me on my way."
Building Up Hope
"She brushed the hair away from my face and kissed my forehead, adjusting the blanket around my shoulders, telling me to close my eyes and just rest, just until the doctor came back in."
Like A Prayer
"What I’m afraid of — what I’ve always been afraid of — is this unknown."
I'm Bringing Sexy Back. Clearly.
"The pain and the fog that had persisted, that had drained me of any semblance of myself, was gone."
From Dust To Diamond
"He’s been my saving grace in ways I’ve scarcely alluded to, for reasons I don’t think I’ll ever be brave enough to put into words."
Please To Meet You...
"While I could have shrugged away the old, familiar signs, it was the new ones that scared the hell out of us."
"I think, I can do this. But then I can’t. Sometimes, it takes everything I have just to get out of bed."
Are You There God?
"Every Our Father feels too scripted and all the Hail Mary’s feel too impersonal, and I wonder how you’ll hear me if I can’t say the words."
Ticked Off (Part I)
"Dear God, I begged as I thought of all the tests, the doctors, the disbelief on their faces and the distrust I had begun to feel for them. Dear God…
Ticked Off (Part II)
"If doctors weren’t going to help me, I decided firmly, then I was going to have to help myself."
Under This Skin
"It’s enough to really tick you off."
When The Devil's On Your Back
"I’m beginning to feel alive again. I’m beginning to find the human underneath the symptoms again, the person and not the patient."
"No matter how much I may will myself better, no matter how many prayers I whisper or scream, I’m not in control. Not really, anyway, not like I want to be."
29 and Alive
"Today is my 29th birthday.
And I’m alive."
The Sun Will Rise
"I can see my future now — there’s a dream reborn."
Dream Until Your Dreams Come True
"When you’re battling for your life, fighting a disease that seems to strip you of that future, you find whatever you can in order to hold onto that promise of something better, of another tomorrow, so that it remains real, so that it stays possible."
What If I Fail?
"Every waking moment becomes a fight for survival, when just living becomes exhausting. For most people, surviving is about the external; for those with a chronic illness, it becomes a war among your very self."
Carry Me Home
"Who are you without this illness? It heightens everything, and it all seems to be a part of you now. So where does the illness — these symptoms that affect your very personality — end and where do you begin?"
Up Close and Personal
"We need to remember that mental illness isn’t a choice, we need to remember that even those with diseases are flesh and blood and emotional, human beings."
A Brave New World
"But today, on this first day of a new year, I vow to start loving myself. Today, I vow to take control back from this illness that has left me helpless. Today, every wish becomes the beginning of something positive.
Today becomes the start of my brave new world."
I Have Seen The Rain
"Right now, I feel completely at peace, like I’m exactly where I’m supposed to be, doing exactly what I’m supposed to do…As if I’ve gone through exactly what I was supposed to in order to get to where I’m supposed to — here, right now, this place, this being."
What Makes The Lucky One
"If there is one thing that surviving Lyme has taught me, it is, without conceit, that I can do anything."
(Resources for Lyme Disease education and support)
The best video resource to learn about the hidden epidemic that is Lyme Disease as well as the political controversy surrounding its treatment, “Under Our Skin” and its sequel "Emergence" is currently available for free viewing across the internet.
ILADS is the official educational resource providing updates to Lyme Disease and co-infection research and legislation as well as information on diagnosis, treatment, and recovery for both the patient and medical community.
LymeNet provides access to support groups, a legal database, medical abstracts, and other resources dedicated to the awareness and education of Lyme Disease.
A collection of articles by a top Lyme physician as published in the Lyme Alliance Newsletter. These articles focus on the affects of Lyme on mental health as evidenced in neuropsychiatric symptoms that manifest themselves as familiarly-labeled psychiatric disorders, specifically in the late or chronic stage of the disease.
Learn more about the emotional impact
of Lyme Disease in the new novel, The Last Letter.
Be LymeBrave! Get the book
or join the community, Being LymeBrave.
2010 - present
2010 - present