May is Lyme Awareness Month--a month dedicated to educating the public on all facets of Lyme disease and other tick-borne illnesses. We thank all of the patients, advocates, and Lyme organizations for their dedication in helping to spread the word and save lives. Here at LymeBrave Foundation, we're taking an unfiltered look at what it's like living with this chronic illness by opening up our journals and sharing the highs and lows of life with Lyme. Join us for our 2018 awareness campaign by helping to #shareyourstory. Contact us to find out how!
Editor's Note: The following appeared as a blog post on Susan's personal website, dated May 4, 2012--the day she was officially diagnosed with late-stage, chronic Lyme disease. To hear the condensed version in a recent speech, check out the LymeBrave Foundation Facebook Page.
Sometimes, when I awaken in the morning, it takes all of my energy just to walk downstairs to let Riley 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 and friends who surround me, not the computer blinking in front of me, not even myself. I’ve been clocked at typing 90 plus words a minute, but 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 my eyes are blank when my mom comes to pick me up, and she says she barely recognizes me. And 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.
I beg her to take me home, where she helps me shuffle upstairs because I can barely walk. And she tucks me into bed and I close my eyes and I’m immediately out. I sleep for hours. When I wake up, my mind is a little more clear; I’ve regained my speech and my motor skills are responsive again, but I barely remember what happened, as if I was outside of my own body, completely detached from the world and everything in it.
Throughout the next few weeks, I try returning to work for a few hours at a time, doing what I can to satiate the symptoms: I layer damp paper towels on my legs beneath my dress pants to ease the burning sensations, taking Advil like it’s candy to lessen the stiffness and pain so that at least I’m able to walk, but it only takes a few short hours before the fog returns, it only takes a few minutes for time to feel like it’s slowing down again. I leave for home while I’m still able to drive, trying to hold the tears of frustration and fear at bay.
This is my waking nightmare, I realize, and I wonder if it will ever end…
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Not again, I thought on another visit to yet another doctor. Dear God, I can’t go through this guessing game again.
But I was crashing. And I knew it. Only, this time, everything was different. This time, I wasn’t recovering and the symptoms were that much worse.
After a 24-hour holter monitor showed no abnormalities with my heart — despite my complaints of chest pressure and palpitations — my family practitioner sent me to a cardiologist, who ordered a stress test and a Tilt Table Test.
No problems with the stress test, they reported. I glanced at my dad as we walked down the hall of the hospital to Cardiology — at this point, we weren’t expecting much from the Tilt Table Test, either. Yet, after I was pumped with medicine to increase my heart rate for the second-half of the test, I felt myself growing sweaty, nauseous, and dizzy. The nurse tried getting me to focus:
“Stay with me, Susan,” she kept repeating. “Are you with me?”
“No,” I muttered…and promptly passed out.
I was diagnosed with Neurally Mediated Hypotension and instructed to up my salt intake to keep my blood pressure raised. And while that may have explained the dizziness and fainting, it didn’t explain the neuropathy, the headaches, the muscle and joint pain, the electric shocks running through my neck and the burning sensation heating up my legs.
And it certainly didn’t explain the years of profound fatigue.
At our request, I was referred to the Neurology department at Johns Hopkins Medical Center — one of the top centers for medicine in the United States. Surely, if anyone could figure out what was going on with my health — with this sudden onslaught of strange and progressive symptoms — it would be the brilliant minds of some of the world’s top doctors.
The neurologist and his med student immediately put us at ease, and my mom, dad, and I exchanged looks that read, maybe, finally, here’s someone who can help us. For the first time, here was a doctor who listened attentively to my history and conversed with me — not arrogantly, not just as a patient, but as an equal, as an intelligent human being who just needed his help. I was immediately grateful for him.
I underwent a brief neurological exam in his office, and after failing a balance test twice, was ordered some more bloodwork and an MRI of the brain and put on medication to ease the joint and muscle pain. The MRI showed nothing substantial, while my bloodwork came back with a vitamin B12 deficiency.
I was diagnosed with Chronic Fatigue Syndrome, Migraines, and Fibromayalgia.
But wait, I thought. This didn’t make any sense…
In the past three months, I had been diagnosed with Chronic Fatigue Syndrome, Migraines, Fibromayalgia, Vitamin B12 deficiency, Neurally Mediated Hypotension, and Peripheral Neuropathy. How could I have acquired six separate disorders and diseases so quickly? How was it even remotely possible that these were all individual causes and not symptoms of something else, something we hadn’t yet figured out?
It didn’t feel right to me, not when I was feeling so badly, not when I was steadily getting worse…I wasn’t willing to accept this answer — certainly not when doctors had been wrong before. There was something else, something very real going on with my body that no one was able to figure out, and I began to wonder how much of that stemmed from no one else being willing to connect all of the dots.
But I was connecting the dots. If the doctors weren’t willing to help me, I decided, maybe it was up to me to help myself.
I spent the next week sleeping 18-20 hours a day, awake only often enough to take Riley out or make a meal for myself or shower or do a bit of cathartic writing so that at least my mind would remain active even if my body couldn’t. I Googled every search phrase and symptom set I could think of and scoured the message boards.
And I kept returning to the same conclusion: Lyme disease.
I had tested negative for Lyme disease multiple times before, but the more I read patients’ personal experiences, the more I saw myself in the diagnosis, and all of my symptoms and the test abnormalities began to make sense. I called my family doctor and requested the Western Blot test — a test that is reportedly more sensitive and accurate than the ELISA test, which is unfortunately used as the standard of initial testing today. She refused to do the Western Blot, stating that if the ELISA is positive, only then is it procedure to go onto the other test for confirmation. She doubted the accuracy of it coming back as positive, however, stating that it could be a false positive as my history showed I had always tested negative before.
Still, I insisted on the bloodwork and then requested my own test kit from a lab in California — one of only two labs in the United States who uses sensitive testing for both Lyme and its co-infections. My previous experiences had bred a deep mistrust for doctors and lab results, and I knew that I had to take control of my own health.
I emailed the neurologist asking if he would sign off on the blood testing for the California lab, but he, too, refused, stating what he believed to be the high accuracy of the ELISA test (interestingly, even the CDC acknowledges the inaccuracy of this test) and sticking to his diagnosis of CFS, Migraines, and Fibromyalgia. I couldn’t be angry with him — not really. The more I researched Lyme, the more I discovered the political controversy and ignorance in its diagnosis; I couldn’t blame this doctor for being so unwilling. So I thanked him for his time and his care and respectfully wrote that I was going to pursue a diagnosis on my own.
If doctors weren’t going to help me, I decided firmly, then I was going to have to help myself.
But helping myself was getting harder and harder when I felt both physically and emotionally drained. I could see the worry and frustration in my parents’ faces, caught the concern in my brothers’ eyes as they stopped by my house to see if I needed anything; I answered texts from friends reassuring them that I was fine, though I felt anything but fine, and I could hear the disappointment in my co-workers’ voices as I called to say I wouldn’t be coming into work yet again, though I tried — oh, I tried.
The feeling of failure, the guilt at disappointing people, the knowledge that no one outside of my family or my close circle of friends who saw the change in me could possibly understand the nightmare I was living began to break me down.
I called my mom in tears, tired of this fight, beginning to believe that maybe it really was all in my own mind, as some people ignorant to the situation have claimed. Maybe this is just me, I began to wonder.
Maybe this was just my genetic make-up and I have to get used to the fatigue and the pain.
I was ready to give up. I didn’t want to fight anymore, I didn’t want to have to be strong when every other part of me was feeling so weak; I just wanted someone else to take the reins for awhile.
And so I prayed. For the first time in a long time, I prayed — really prayed. And I’m not even sure what it is I asked for, but tears streamed down my face and my heart grew heavy as I begged for some reprieve. Because I couldn’t…I just couldn’t do this anymore…
Everything changed the next day. And if I didn’t believe in answered prayers before, I certainly believed in them now.
I opened up my email to see an answer from one of the members of a message board I had recently posted to, offering the names of some Lyme-Literate doctors here in Pennsylvania. I read down the list and called some of the numbers, but I kept returning to one name — an advocate for Lyme patients, the note on him read, this doctor and his entire family had once been Lyme patients themselves.
Almost intuitively, I knew that here was my miracle.
His wife called me back almost immediately, and I remained on the phone with her for nearly two hours as we talked about the crippling nature of Lyme disease. She told me about her family’s own experiences and educated me on Lyme’s co-infections, and I found myself nodding, wanting to cry from gratitude and thanking God and whoever else had led me to them. Because every single symptom she listed — symptoms that other doctors had ignored or brushed off — seemed to match my own life. And when I told her my history — of being diagnosed with mono multiple times and how everything seemed to progress immediately after surgery — I could hear the knowing nod in her voice.
It would be expensive, she warned, but I knew that now that I’d found someone who could help me get my life back, I wasn’t willing to give them up.
I wasn’t willing to give up.
Two weeks later, my parents and I traveled the three hours to meet them. The appointment lasted five hours as they consulted, educated, and did their own examination and testing.
“Does she have Lyme disease?” My dad asked the doctor directly at one point.
“Oh, yes,” he assured my family, “and at least one of the co-infections.”
They set me up to begin treatment right away, handing me literature and offering me reassurances and themselves as examples that though it’s a rough journey, though it’s the nature of this particular beast of a disease to get worse before I get better, I can be healed.
And as I shook their hands and thanked them over and over again, one thought kept ringing in my mind:
I’m going to get better.
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