I Will Beat These Beasts--Lydia Niederwerfer:Part 1

The Story Begins

After a gorgeous day of picnicking and canoeing, I discovered a tick buried in my shoulder. Who knew that this small insect would change my life? I went to the ER and was given 10 days of Doxycycline just to be cautious. A couple days later, I had the Bull’s Eye rash, mild headaches, minor flu-like symptoms, and a stiff neck. The standard regimen seemed to help because I felt better.

A couple weeks later, I began getting stiff knees. Besides my stiffness, I was experiencing headaches, hot flashes, chills and fatigue. I asked for another treatment of antibiotics and was refused, not only by one doctor, but many. The Western Blot and Elisa tests were defined as negative, only 3/5 bands positive with others described as IND. Despite the tick, all the early clinical symptoms and some positive bands, the doctors refused to think Lyme was to blame. It had to be something else.

After numerous tests to rule out ms, lupus, meningitis, rheumatoid arthritis, celiac disease, etc., my central nervous system functions began to go awry. Quickly, I became completely debilitated. It was as if someone poured a bucket of symptoms over my body all at once. The list was endless: severe nerve pain, one stiff hip, uncontrollable shaking of hands and arms, constant low grade fever, peripheral neuropathy, temporary loss of sight, tunnel vision, chest pains, severe pain all along my spine, flu-like symptoms, loss of night vision, loss of speech, loss of motor functions, loss of coordination, difficulty walking, numbness and tingling of head, hands and feet, arthritis, short term memory loss, loss of hair, loss of cognition, inability to hold urination, diarrhea, and severe migraines. With each breath my entire body burned. I hoped each breath I took would be my last. I became bedridden, severely depressed and unable to do any work. I had to endure the indignity of having to be bathed and clothed by my husband.

Remembering a Life I Once Knew--Martha B

As I sit with pen in hand, weighing upon how to give an account of my battle with Lyme, I have no recollection of a tick or mosquito bite resulting in a bulls-eye rash or flu-like symptoms. I question how I got to this place in my life. I remember a life I once knew--what it felt like to run three miles a day, freedom to socialize with friends at a favorite neighborhood restaurant, eating without thought of the biological aftermath, and living without annoying and debilitating symptoms every moment of the day. I dream of a day where I can be free of Lyme, and will find normality as I join others in living.

My journey into a life with Lyme began unknowingly at the age of 31. I was a newlywed. I married a wonderful man at St. Mary’s Cathedral in Memphis, Tennessee, on March 1, 2003. It was not an expensive wedding, but a beautiful one. Shortly after, we began to train for the Peachtree 10K in Atlanta, Georgia. We had planned it early on and had been looking forward to it for months; it would be the first race would run together as a married couple.

Three weeks before our July 2 departure, I woke one morning to find I was severely constipated, and I knew at that moment that it was not just an ordinary episode. I did all I knew to relieve the symptoms, but was unsuccessful. The symptoms stayed with me all day and all night, and were more intense than anything I had ever experienced. I felt awful, but made the trip and successfully ran the six-mile race. Once I returned, the doctor’s visits began.

Unbalanced--Randy Gibson

My ordeal with Lyme Disease began when I was infected in October 1989 on a trip to New York. Unfortunately I was unaware I had been bitten by a Lyme tick, though I returned home to Twentynine Palms, California with a rash on my forearm. We had never heard of Lyme disease at this point and it was nearly two years later that we would hear about it.

At first I had flu like symptoms and as a pastor had to struggle through the Thanksgiving and Advent season. I had assumed that I had a bad case of the flu and would just have to get by till it passed. I was terribly worn down by January when I first saw a Doctor. He too said I just had the flu and to take it easy.

A couple weeks later I went back with severe chest pain and after an Xray he said I had possible pleurisy and gave me some antibiotics. I had some improvement but was still not back to normal. I was scheduled for a 6-week visit in Argentina in April with the Rotary Club and made that trip with a relapse in the third week. I was staying with a doctor in Buenos Aires who gave me more antibiotics and I felt better in a couple of weeks.

Another Battered Soldier--Holly Heisey

I’m twenty-four and I’ve been sick since I was ten. I got sick on the first day of fifth grade, and nobody believed it wasn’t because I didn’t want to go to school. A month later my parents pulled me out and I was homeschooled. I went through countless doctors, and that’s terrifying when you’re an adult, let alone ten. I found a nutritionist who helped me get well enough to go back to sixth grade, but by then I had many allergies and physical weaknesses that kept me from really fitting back in.

I stayed mostly healthy until eighth grade, when I got sick all over again. I had to leave school in the middle of the year. I was having panic attacks (of course it was all in my head!), short breath, vertigo, and I always felt like I was going to be sick or pass out. Another round of doctors ensued, one of whom wanted to admit me to a mental facility because he was convinced I was suicidal. Tell that to a fourteen-year-old.

I finished eighth grade at home and continued to homeschool, but I also continued to get worse. Finally, my family found out our home was infested with stachybotris, a deadly toxic mold. We moved, and we have nothing today that we owned before fall of 2001. It was a miracle that we got out relatively unscathed. We thought all our health problems were over.

A Series of Miracles--Victoria Bylin

"Something terrible happened to you.”

These are not words you want to hear from an ophthalmologist. At the time I was sitting in his fancy chair in a dark exam room, my eyes red and hurting, and my vision distorted in the way of pebbled glass. I had no idea at the time and neither did the ophthalmologist, but this was the beginning of my encounter with Lyme Disease. By a series of coincidences--I’d call them miracles--I was blessed to be diagnosed early and treated successfully.

My Lyme ordeal began while I was working at the computer. I blinked and thought, “I need new glasses.” A few moments later I looked in a mirror and saw that both eyes were bloodshot. I figured I had conjunctivitis and met a friend for lunch as planned. By the end of the meal, my eyes weren’t just red. They hurt every time I changed my focus. That evening I developed the strangest fever I’ve ever had. It spiked at 103 degrees and then disappeared.

I Will Make It Through--Tiffany Gonzalez: Part 2

What I saw and heard next changed my life. The news segment was about a documentary movie called Under Our Skin. They were saying how all these people were misdiagnosed for years, and eventually found out they had Lyme Disease. I couldn't believe my ears! While watching, I felt an instant connection with these people. They sounded like me; our stories were so similar. I felt like that was me on the TV--but wait--I had tested NEGATIVE for Lyme in the past.

The next day I couldn’t get the news segment out of my mind. I was ridiculously giddy. My naive self feels stupid about my excitement now. If only I knew what I was in for. I did online searches for the movie and looked up Lyme Disease in Chicago. I found the wonderful ChicagoLyme website and called their contact number. I left a voicemail for the woman, and didn't really expect a call back. No one believed me before, right? Why would someone call me back? Well, I got a call back from Lauren within a half hour. Wow! It turned out she was in the news segment. Her whole family has Lyme Disease; she lived right here in the suburbs. She directed me to where I could go for the much more accurate test called a Western Blot Blood Test done by IGeneX.

That day, I sent out a FB message and email to my friends, inviting them to come see Under Our Skin with me. No one responded. Who can blame them? They didn't know anything about this "Lyme" thing, and it didn't affect them, so why should they care? I get that. I do. At least my little sister Adriana came with me. Thank you! We saw the movie and I think I sobbed through most of it. I felt like the people on the screen were telling my story, without even knowing me. It was a crazy experience.

I went for my Western Blot test and waited a month for the results (that's how long it takes). I had prepared myself for the grueling results and expected them to be positive. I had all the symptoms. Well, my doctor read--misread--the results and told me they were negative. I cried. I cried so much. I was glad I didn't have this horrible disease, but then what was wrong with me? I left with my bittersweet answer and never felt more defeated. Now I was depressed.