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Originally Posted HERE
Elizabeth’s story, from our friends and neighbors at Georgia Lyme Disease Association:
“My name is Elizabeth Williams. I’m 18 years old and live with Chronic Lyme Disease. I have lived in Georgia all of my life and currently live in the Vidalia area. Even though I can’t be one hundred percent sure, I believe that I contracted Lyme after a fishing trip when I was five. Shortly afterwards, we found a tick embedded in my back. After removing it, we didnt even think of Lyme.
I am not sure exactly when I started to notice symptoms, but remember always feeling different than everyone else. One symptom I had was stomach problems the pain would not seem to go away. I went to a few doctors and they said it was possibly gas, ulcers, acid reflux, or celiac disease. I also remember having muscle and bone pain that everyone said was growing pains. I asked my doctor about this and he brushed it off as the same thing. Another problem was with my hands: they were always blotchy and freezing. It was very uncomfortable because people would always say things about them and ask questions. These symptoms never had an answer; I just figured that this was the way I was.
When I was 15, I started having nausea and fatigue that came on quickly. Other symptoms followed – throat problems and pain, fast heartbeat, dizziness, ringing, humming and pain in ears, headaches, muscle and joint pain, brain fog/confusion, trouble concentrating. These are most of them, not counting the others I mentioned.
It seemed like I was always going to doctor after doctor. The doctors I saw were smart, and most of them were very nice, but they had no idea what was going on. It did not help that all the tests they ran came back negative. One doctor I went to suggested that I may have Chronic Fatigue Syndrome or fibromyalgia and told me to check it out. After learning more about it, we set up an appointment with a well-known and well-respected rheumatologist. After ruling out lupus, she made a diagnosis of fibromyalgia. I was so relieved and ready to start getting better. However, it did not take long for me to start second-guessing this diagnosis. After doing much research, I found that fibromyalgia seemed more like a symptom or syndrome than a disease itself. Something just did not seem right, it didnt click. I knew that whatever I had was even more serious.
My mom started searching the Internet with my symptoms and learned about Lyme disease. After I read about it, I KNEW that this was what had to be wrong with me! We asked my rheumatologist about it, and she said that it was nearly impossible because Lyme was not really in Georgia. She then told me about a study that the CDC was conducting. The only reason that I wanted to do it was because she thought that participants might be tested for Lyme disease. However, once I was in the study, I asked them about the Lyme test, and they said that there was not one! To this day, they cant find my results from that study.
We were convinced that I had Lyme disease so we found a Lyme-literate doctor and made an appointment. He spent around an hour with us and was extremely thorough. He made a clinical diagnosis of Lyme disease. I later tested positive by Western Blot. He strongly suspected that I had Bartonella and Babesia, too. Because it was untreated for years, I now have to be on antibiotics for a long time, and it may take a while for me to get better.
Now that I look back, everything makes sense. Every symptom that I thought was crazy is just typical of Lyme. If I had just seen one pamphlet or one TV program about Chronic Lyme Disease, I know that I would have figured all of this out earlier. That would have saved me a lot of trouble. That is why Lyme disease awareness is so important to me, and I will continue to tell my story whenever I can.”
SouthernGal here… I chose Elizabeth’s testimony because it is similar to my own. Tick bite at a very young age. Nonspecific, multi-system involvement, worsening symptoms over several years, and lack of general information within the medical community. It’s difficult facing Chronic Lyme as an adult. Young people such as Elizabeth must have personal strength and a diligent family support system. I will continue to share her story, and others, while I wait and pray for changes WITHIN the system.