A Lyme Story: Reclaiming Life from ALS
My initial symptoms started with cramping in the left hand. They thought I had carpal tunnel or maybe a pinched nerve. A neurologist diagnosed me with ALS (amyotrophic lateral sclerosis), and I went to the Mayo Clinic for a second opinion. I developed tremors like a Parkinson's patient, and my muscles just started to disappear. I was getting foot drop and starting to fall a lot. I knew what I wanted to say, but I sometimes couldn't get the words to come out. My lungs were only functioning at 36 percent. I always felt like my body was heavy with low energy.
I was diagnosed with ALS in May 2020 by a neurologist and top ALS specialist here in Illinois. In the summer of 2020, I went to the Mayo Clinic, where they gave me a second diagnosis of ALS. In February of 2021, I went back to the neurologist and was progressing. When someone is diagnosed with ALS, they are given an ALSFRS score. The most you can get is 48. Every few weeks to months, your score will drop by a point. When your score gets to zero, then you have zero function left. They told me I had three years to live. They told me there was no treatment, no hope, and if I beat this ALS diagnosis, they would call me a miracle. In March of 2021, I became desperate, and we cried out to God to heal me. The impossible became possible, and I will forever be grateful.
I decided to add myself to an ALS support group, and the very first post in capital letters said: YOU DON'T HAVE TO DIE. GOOGLE LYME DISEASE TESTING ACCURACY AND THANK ME LATER. So, I did, and less than a week later, I had an appointment at an LLMD and took the IGeneX Lyme test. The results showed that I was positive for many tick-borne infections. I started Lyme treatment, and all of my progression has STOPPED—THANK JESUS! In July of 2022, I added in high doses of vitamin B1, thiamine, and my ALSFRS score INCREASED to 47/48. We know without a shadow of a doubt that with God, ALL things are possible. I now live life totally unassisted. I work 40 hours a week and walk a few miles every day. After almost three years of Lyme treatments, I am in better health now than when I was diagnosed.
I have come into contact with many people misdiagnosed with ALS, and many of them think I'm crazy when I tell them my story. However, some listen and get tested for Lyme. My daughter and I started a group called When ALS/MS/TM is Lyme because there are others around the world diagnosed with ALS, and when treated for Lyme, many of them are improving. My daughter and I have had to research and then bring our treatment options to the doctors. Many people doubted us and called us crazy for believing these infections were real. Now, I have more energy, my body feels lighter, and my lungs are functioning at 46 percent. My ALSFRS score has INCREASED. My neurologist doesn't understand why or how it's possible that I am improving, and yet, he still won't consider that I have chronic Lyme. He says I still have ALS but can’t explain why I am improving on Lyme treatment. His education about Lyme disease is really disappointing. We recently met Dr. Al Miller, a retired physician from Mayo Clinic, with a family member initially diagnosed with ALS and later found to be Lyme. He has a good YouTube series that I recommend. I would love to see more education for mainstream doctors about chronic Lyme disease.
