Raising Hope for Families with Lyme

LauraLaura – A Fighting Chance

Eyes fluttering open, the room around me pulsated. Or was that my aching muscles? Eyelids? Hands? Pain shot from my head through to my toes trapped everywhere in-between. Finally conscious after hours of delirious sleep, I tried to sit up but couldn’t. My eyes rolled down to look at the small feet lying limply across the white, blue and pink checked blanket, concentrating to make them move. They wouldn’t. “I’m so tired,” they cried to me. Weights seemed to be holding me to the quilt stretched across the carpeted floor—I was too weak to make it in bed. My parents’ room suddenly grew empty, or I just realized that it was. For a simple moment, I wanted to eat, but the achy pain rose up, refusing the thought of food. I tried to call for my mom, but no sound passed my lips—speaking required too much effort. I rotated my head and saw the bell sitting quietly, waiting so patiently until I needed its services. I began inching my fingers towards it then stopped, weighing my options. My eyelids felt so heavy, steadily drifting open and closed. Eventually I gave in to the call of rest before calling for assistance.

A startling jolt aroused me, to me it felt like years had pasted. Blinking rapidly, I recognized the back of our 7-passenger van. Intuition told me that Dad was at the wheel. Every turn and crack in the road shot electricity and white fire through my body. Just make it stop. I willed tears to fall, but my eyes stubbornly remained dry. The warm air chilled my bones as my hands shivered. Dad shifted lanes quickly. Stop! I wanted to scream- it hurts! – but the words kept getting caught it my throat. He finally jolted to a stop and tenderly lifted my lifeless form from the backseat. It didn’t feel tender. Every bone in my body was breaking, every muscle ripping from them. If I didn’t rest my head against him, I knew it tear from my body. The world spun, taunting me. Make it go away, Daddy, make it go away. He heard me say nothing and kept walking steadily toward the building to deliver me to a woman who would help. As far as I knew then, Daddy did make it go away.

I was five years old, and after my parents were told repeatedly that I did not have Lyme, my father took matters into his own hands. Our doctor wouldn’t even give me a blood test. After 2 weeks without treatment, I almost died. I was then treated, but not for long enough. The “Beasties,” as my family has come to call them, had found a safe home in my body already.

At birth, Dad held me and knew there was something different. I didn’t cry. My look was distant. I just wasn’t the same as his three older children, but he couldn’t have predicted what would happen next. In 2013 we learned just how right my Father had been to suspect something was wrong. I had been born with the bacteria. As each of my new organs grew in the womb, the bacteria grew. As each muscle got stronger, so did it.

At eight years old, three years later, a tick bit me again and the disease flooded my thin body. After more fighting with the doctor, Mom finally got me antibiotics. “The Beasties” wanted revenge this time and eventually conquered my brain, eyes, ears, heart, lungs, stomach, kidneys, intestines, muscles, joints, and more. At first, my symptoms started slow- I often complained of knee pain. I’d lay in bed at night unable to fall asleep because of the ache. My dear mother came in and rubbed them, singing and talking softly- trying to alleviate my hurt as best she could. The Doctor and nurses called it “growing pains.” My muscles were weak, I was immunosuppressed, and I had insomnia (making me constantly fatigued). Over time, my “growing pains” developed into dizziness/fainting, anemia, shortness of breath, foggy thinking, eye tracking difficulties, headaches, and an inability to concentrate. Still getting no attention from my physician, I assumed it was all in my head.

After I reached college, things began to intensify. My joint pain was no longer limited to my knees but had spread to my shoulders, elbows, wrists, fingers, hips, knees, ankles, and toes. This was accompanied by excessive thirst, a more severe shortness of breath now with chest pain/tightness, a racing heartbeat, short-term memory loss, abnormal periods, hair loss, nausea, loss of appetite, brain fog, a steady cough, and constantly trembling hands. This was not in my head; it couldn’t be. The heart problems scared me, and I went to see another doctor at the school who did an EKG she deemed “normal” and sent me packing. After getting lab work for hypoglycemia and other diseases and always being told I was “normal,” I finally became frustrated and broke down in my room- sobbing uncontrollably. I am not normal, I cried out.

Most days I couldn’t make it out of bed. Usually a fast walker, my gait slowed extensively, it now taking me twice as long to get to classes. I cried in my room often wondering why I wasn’t like everyone else. Why things took me so long to understand. Why I was always in pain. Why my legs were so stiff. Why food made me sick. Why not eating made me sick. Now convinced I had rheumatoid arthritis, I visited a rheumatologist. After running 3,000 tests, everything came up- surprise, surprise… negative. He handed me a prescription for pain medication and a steroid for the inflammation. I took the pain meds gratefully but held off on the steroids until I absolutely needed them. About a week before finals my junior year, the pain was so bad I didn’t think I would make it. There’s no way, I told God. I can’t do this without you. Please, please help, I pleaded as my body shook in bed. I rolled toward the yellow box of steroids sitting beside my bed. I’d resisted for weeks, but now was the time. I lifted myself from bed slowly and limped toward their resting place, picking them up gingerly. I reread the label and read the instructions of how to take them. Something inside me was pulling back. I started to open them, but stopped, turning the box around in my hands a few times. Can I do it without them? I stared at the yellow cardboard wondering how much they could really help. I searched within myself, measuring my strength. I don’t really need this, do I? Some would wonder whether it was my stubbornness flaring, denial, or just plain stupidity. Others would call it genius. I say it was God. I know it was. Lyme patients should never take steroids. They give the illness extreme strength. If I had taken those drugs, I’m not entirely sure I would have survived considering how strong the bacteria were at that point. Needless to say, I got through finals, although I didn’t finish the year with the grades I would have liked. I can’t complain, though- I finished.

Next step was an endocrinologist. It wasn’t hypoglycemia, diabetes, fibromyalgia, chronic fatigue, low blood pressure, celiac, any type of arthritis or bone disease, but it was something. After talking to him, he perked up when I mentioned having Lyme twice. He asked if I’d ever been tested again. Turns out I had- three times- each test came back negative. He educated me that Lyme tests are only accurate about 50% of the time. He did more lab work, but we all were suddenly convinced I still had it. The thought had traced across my mind many times, but each negative test depleted my confidence. The endocrinologist’s tests revealed that the Lyme had infected my thyroid and caused hypothyroidism, but that wasn’t where my confirmed diagnoses ended. My parents found a LLMD in PA and an appointment was made immediately. Within five minutes of being in the room with him, he was convinced I had it and started me on antibiotics immediately. I thought this was it. Someone found what was wrong, and now I was going to get better!!! I knew it would take a while (the doctor said about 9 months), but it would finally stop. Not so quick. What I thought was the end of a battle, was only the beginning- the beginning of my war with Lyme and the many co-infections that came with it. I was told I would never complete my education. Watch me, I dared the disease.

An infectious disease doctor and neurologist were consulted. A cardiologist diagnosed me with dysautonomia, and I started appointments with a primary care physician bimonthly. Due to my LLMD announcing that my case was above his training, and that there was no more he could do for me (I had had the disease too long for his abilities), I now see a Lyme specialist in Washington, D.C. and have been on IV therapy the last 7 months following a few surgeries. I’ve been in treatment since May 12, 2011. During that time God enabled me to graduate with honors from nursing school!!! I couldn’t believe it had happened. I was on bed rest for the duration, but I did it with the help of a correct diagnosis, the correct medicines, and a very talented physician’s assistant in Asheville. Two years of oral, IV, shots, and multiple supplements take their toll on finances. There wasn’t any money left. I didn’t know how I’d ever be able to finish what the doctors had started. I feared for my life, we all knew without treatment I wouldn’t make it. Then Lymelight came. This grant has given me my life back. My hope. Prayers were turned to worldly value. Even after all these consultations and treatments, I know this is still only the beginning of a struggle with Lyme disease and its attack on our nation, but I plan to fight it not only for myself but for each suffering adult and child. I yearn to return to school to become a specialist myself after the worst is over, and that is only possible because of the wonderful men and women at the Lymelight foundation and their many contributors and donors.

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