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A Lyme Disease Story – ” I Could Not Walk…..and Now I Can Run”
written by Alane Stieglitz-Wincek
“Yes, I believe that chronic Lyme Disease symptoms exist, and many people are suffering from them. I also know there are co-infections, and proper testing is needed so people know which infection(s) they have and the best protocol/treatment to use.”
Without clear answers, we are guessing, wasting time, money, and energy.
My story starts in 1982 in a small town in upstate New York called Oswego. I was attending college and studying to be a Graphic Artist. I spent my mornings and early afternoons in classes and late afternoons and early evenings; I enjoyed walking along the lake. Nights were about partying and having fun. I loved to go to the candy shop at the student union or dancing at clubs downtown with my friends. Life was good.
I enjoyed Oswego, NY, so much that I stayed up there for the first summer and took classes. I lived off-campus in a house with four other girls. That summer was sweltering for upstate New York.
One day, I believe it was around July 4th, the neighbor’s dog came over to play. I played with him for a bit and then went out on the town with my housemate Amy. The dog stayed in our house and slept in my bed most of the day. We got home around 2 in the morning, and I climbed into bed. Two hours later, I woke up screaming for help. My legs felt like they were on fire! Amy came running into my room and yelled for me to get out of bed as there were flees and tics everywhere. We tossed the sheets out the window, and then I jumped into the shower. We went back to sleep and thought all was well…………….
The following weekend there was a race at the Oswego Speedway that I was attending. I had an ugly rash on my right leg that I did not want anyone to see. So in 101 degrees heat, I wore jeans and a tee-shirt, and off I went.
The fall semester started in August, and I was feeling tired a lot. Plus, my stomach was acting weird. I put up with the symptoms and did not think much of it. Over the next year, the fatigue and stomach pains got worse, and odd neurological symptoms started.
One night while working at the student union candy store, I was scooping out some gummy bears for a student. I noticed my legs felt weak, and I was having trouble standing. Later that evening, as I was sweeping up the floor, my legs gave up, and I fell to the floor. This feeling is odd, I thought. Then I started getting very cold, and my feet and legs seemed to be losing circulation. I had to warm my feet frequently in a bucket of hot water, and I started to wear wool socks 24/7 to keep them warm. These health symptoms were entirely new to me. I couldn’t imagine what was wrong with me. I felt like something had gotten into my body that didn’t belong there – and it was creating havoc.
My professors knew something was wrong. My dad often called the school to ask if the chemicals from the paints, inks, and other items could be making me sick. They said that the ventilation system was excellent, and they did not think that was the cause.
I went to a local medical doctor and tried to explain what was happening to my feet and legs. He said it was some “algia,” which meant “pain,” and he said to take pain medication. I left feeling concerned and confused. One semester I flew home for the holidays, and mom took me to an orthopedic surgeon. He ran labs, looked at my feet, and said he did not know what was wrong but noticed my high sedimentation rate.
Somehow I knew I had to continue with school, and I would try my best to finish up, even though I was struggling with some odd symptoms that no one seemed to understand.
The last day of school was in December 1985. I overslept and was rushing to get to my painting class final. My legs hurt so much that I ended up crawling through the art building and up the stairs. One of my professors saw me, picked me up, and carried me to class. It was the art final portfolio exam, and I could not miss it. He held me and placed me on a stool. One of my classmates, Theresa, came over and told me she would pray for me. I was never one for religion, so I just smiled and thought it could only help.
After graduation, I could barely walk. My feet hurt all the time, and if anyone touched me, I would feel radiating pain throughout my legs and feet. I would take a few steps while holding onto the walls or chairs to get where I needed and then sit down for the rest of the time. I visited doctor, after doctor, after doctor. Still, no one could identify the baffling ailment that was robbing me of my life, and I was starting to lose hope. The only thing that seemed to be consistent was a high sedimentation rate.
This former high-energy college grad was now spending most of her days in bed sleeping or watching television. I couldn’t work, couldn’t walk, couldn’t cook, couldn’t clean – couldn’t do much of anything. I was always troubled with stomach aches, upper respiratory infections, fatigue, pains, and yeast infections. My energy was low, and my pain was severe. My friends and family comforted me the best they could. I seemed to be in a never-ending downward spiral, a repetitive cycle that needed to be broken.
One doctor I had gone to for a while diagnosed me with RSD (reflex sympathy dystrophy). He said he had never seen a case that was “bilateral” (affecting both sides of the body). He put me on muscle relaxants, blood thinners, and anti-inflammatory medications. They worked to a point. I also had two chemical blocks in my back to see if they would reduce the pain in my legs and feet and bring the warmth and circulation back. They seemed to work but temporarily.
I had moved around every few years, so I had to change doctors. In a small town in New Jersey, I met a young neurologist at physical therapy, and he asked for my story. I shared my symptoms. He said he did not feel it was RSD but something else, but he would need to see me in his office for an appointment to figure it out. I was tired, did not want to see anyone else, did not trust anyone anymore. I was scheduled to have surgery the following week that I was determined to have. It is called an abdominal, bilateral sympathectomy. They were going to cut the sympathetic nerve that seemed to be causing all of the pain symptoms. The neurologist asked me to re-consider, but I said, “No.”
I went ahead with the sympathectomy, and when I awoke, I had a strong feeling that I had made a colossal mistake. It took me a long time to recover from the surgery. I was getting more tired, and now depression was creeping in. The surgery was my last hope, and it did not work. I felt worse. I honestly was ready to end things. The pain was debilitating, and no one seemed to know what was causing it.
I had never been one for religion, but, at this point, I couldn’t see any harm in trying to speak to God. My good friend, Maria, seemed to know God, so I thought He had to be out there. Plus, my friend Theresa from college did say she would pray for me, so I guess she too believed in God. So in June 1988, I pulled myself up on the kitchen counter and started to cry out to Him. I asked Him to send me help and guide me on a path of healing. I told Him I would do anything He asked me to do to get better, and I would never forget it for the rest of my life. I asked Him to please give me back a life of joy and be the person I was created to be.
What Happened Next
About two weeks later, I was at the same physical therapy clinic in Denville, New Jersey I had been going for the last year. One of the physical therapists ‘Donna”, asked me to please see the orthopedic surgeon that owned the facility. She said, “I just know he will be able to figure this out.” She and the other Physical Therapists told me that my body did not react to electric stim like other patients, and it was odd. They, too, felt that the right diagnosis had not been found yet. When I thought about Donna, I remembered she wore a beautiful gold cross around her neck. Maybe she knew God, I thought.
I agreed to see their orthopedic surgeon. I liked him. He asked many questions and listened to my story. He said he knew what was wrong with me but needed to prove it. He ran tests that no one else had done before. He ran testing for MS, connective tissue disease, did an EMG that was quite painful, and did some blood tests.
Around July 4th, maybe ten days after the appointment, he called me at home and said, “Congratulations, you have Lyme Disease.” ! The reason for all your pain and symptoms was a tick. He was the only doctor ever to ask me if I had a rash on my legs at any time in my life or had a weird rash similar to a bull’s eye rash. YES! I remember the dog from Oswego, NY, and the rash I had on my legs after he came over to play. I excitedly told him about the fleas and ticks in my bed. He said the antibody test indicates it happened around five years ago, which was exactly when I had seen the rash on my leg.
Emotionally I was feeling all different things at the same time. I felt angry at the doctors I had seen that never found Lyme Disease. I felt mad at myself for not trusting the young neurologist in Hackettstown, NJ. And I had so much gratitude towards the doctor that finally diagnosed me correctly. I had been suffering from Lyme Disease symptoms all these years, and it was such an awful disease.
What happened next was odd. The orthopedic surgeon said he felt it was too late to cure me; I may never walk again. But deep down, I felt so happy that I found a drive within me that I would do whatever it took to make it happen. I wanted to turn my life around. He sent me to an infectious disease doctor in New Jersey for further help. He ran a Western Blot test on me, which he said was better than just an antibody test, which the orthopedic surgeon has run and diagnosed with me. He said the rule of thumb is you need five positives to be diagnosed with Lyme; I had four positives on the test. He said, “I cannot diagnose you, but here is some doxycycline for a few weeks to help you.” It seemed a bit confusing that the first doctor diagnosed me with Lyme Disease symptoms, but this doctor said he could not because I only had 4 of something and not 5. But he smiled and gave me antibiotics to treat it.
I was still so excited to have a diagnosis or at least know what happened to me. I went on my first vacation in years to celebrate. In the Poconos, in PA, I met a couple that told me about their cousin Andy, a chiropractor. Interesting coincidence, Andy’s office was only 10 minutes from my home in New Jersey.
I had never been to a chiropractor before. He started adjusting my spine, and within a few adjustments, I began to feel my feet again, but without the burning pain, and move my body more efficiently. He tried hard to talk to me about my diet. Still, I did not want to give up my milkshakes, fruity pebbles cereal, hamburger helper, canned fruit, pop-tarts, soda, and frozen yogurt. I had no clue that my diet was preventing me from getting better. But Dr. Andy and the vitamin store he kept sending me to got me to trust them, and I opened my mind up to change what I was eating. I was not happy about it, though.
Over time I became fascinated with food and how what I ate was helping reduce the Lyme Disease symptoms or make them worse. I started reading about herbs, vitamins, minerals, antioxidants, and how the right ones can help when someone is ill. My biggest question was always, how does someone know what vitamins they need in a big vitamin store? Money does not grow on trees, so wasting money when you are ill is not okay.
Next, my legs and feet started feeling better, so I began to work in a vitamin store in Parsippany, NJ. It was a hectic store, and the owner was extremely knowledgeable about food, vitamins, and what the body needs. But sales were a high priority, and she wanted us to sell a lot of vitamins to people. I understood the need to make money, but I had an issue selling vitamins to people they did not need. I remember a lady running into the store one day stating she wanted a particular antioxidant. I asked her what it was for, and she stated, ‘ I don’t know, but an article I read said to take it, so I want to.” It was at that point that I knew what I wanted to do in life. I wanted to be the person people could trust to guide them to which vitamins, foods, antioxidants, etc., their body truly needed. I also wanted to be someone that could provide answers when there seemed to be none.
After a while, I moved to the south to a warmer climate. I liked NJ a lot, but the cold weather was still hurting my feet. I listed my house, and it sold in one day. And for more than the asking price.
Found a few fantastic vitamin stores in the Atlanta, Ga area and met some wonderful people. I told them my story of Lyme Disease. One owner strongly suggested I go back to school and get a degree in holistic nutrition and naturopathy. I told the owner of one store about my talking with God, and she said that he heard my prayers and directed my days. She took me to church with her, and my third time there, I turned my life over to Jesus. I had nothing but gratitude in my heart for God healing my legs and helping me to know what to do to get better. I would remember my promise to Him and work hard to help others as they helped me.
A few years later, I can happily say I finished a certification program in holistic nutrition and naturopathy. I have also taken many certified classes through Bridgeport, CT. I learned about the nervous system, autoimmunity, blood chemistry, hormones, toxins, mold thyroid function, Lyme vitamin testing, food intolerance, gluten, and more. I have also taken many ILADS classes for Lyme Disease symptoms and am an ILADS trained naturopath.
My work is so rewarding, and I love what I do. I work hard to get to the root causes of my patient’s symptoms. This may include dietary adjustments, labs for vitamin deficiency, food intolerance, toxins, etc. Then I guide them to the best health-supportive protocol so they can get their lives back too.
What I Have Learned From All of This
What I have learned is Lyme happens. Symptoms of Lyme Disease are a struggle for many. A Western Blot test will show fewer positive Lyme bands the longer you have the disease. And the Western Blot test only detects Borrelia Burgdorferi, not the many co-infections most people have. Plus, traditional blood tests are not always good enough.
But here is when forgiveness comes in. If one of the early doctors I had been taught about Lyme or an illness from a tick bite and put me on antibiotics in the early stages, things may not have gotten so bad. But I forgive them and understand they did not know about symptoms of Lyme Disease or how it affects the nervous system back in the 1980s, even though it happened in New York state.
I am grateful to those that have helped me over the years and am incredibly thankful that my prayers were answered. My faith in God is firm as I know He directed my path to health and healing, and now I spend time during my days helping others regain their life and health, naturally.
Today I am living a joyful and active life. I have my good days, and I have Lymie days. I enjoy outside activities like mountain biking, walking, swimming on the beaches as much as possible. My family understands that sometimes I need to stay home, watch movies, play with the dogs, and enjoy home-cooked food.
I finished school in 1999 and started a practice in the Atlanta, Georgia, area called Nutritionally Yours. I have the privilege and joy of helping people get their lives back. I work virtually to help people with all kinds of symptoms from the comfort of their home or office. Plus, I work in a local clinic helping people in person.
I hope you have found this story encouraging and you are ready to begin your journey back to good health. It has been more than 30 years since I was diagnosed with Lyme Disease. My days now are primarily pain-free and active. From time to time, it tries to come back, but I don’t let it!”
Alane Stieglitz, Lyme Survivor