I never saw the tick bite or found any rash on my body. Most of my symptoms were neurological. I had a variety of symptoms that would come and go and most were neurologic. I would have numbness in hands and feet especially in the morning. I had excruciating jaw and neck pain that wasn’t helped by anything I took to try and stop the pain.
I ended up with shoot pains and electrical pains going into my face, head and jaw. It was difficult to remembering anything. Dizziness was common place. Reading became very difficult for me and I couldn’t remember most of what I had read. Weakness became prevalent and it was difficult to get up and down the stairs.
My mother had passed away from ALS so I was aware that there is a slight genetic component to ALS so there was concern about that possibility. However the symptoms seemed to be a little more similar to multiple sclerosis and I talked to my wife about a neurological consult. I really didn’t want that diagnosis. And to be honest my thinking was very muddled, my thoughts hardly seemed my own and I couldn’t form clear concise thought. I would frequently repeat myself over and over driving my poor wife a bit crazy. Sleep just wouldn’t come and nothing helped include prescription medication. Waves of intense anxiety and depression would hit me like nothing I’d ever experienced. Many days I would have been happy just to not ever wake up again.
But at this point in time I got very lucky. My luck came in the form of Lucy one of my newest dogs. Lucy is a Tibetan Spaniel and typical of the bread has no tolerance to pain. We’ll Lucy at that time started to limp and our vet diagnoses Lyme disease in the dog.
The other luck was my wife Carrie who, “Maybe you have Lyme, get the test.” The test did come back positive and I made an appointment with a Lyme knowledgeable physician. I had a lot of central nervous system involvement and recovery has been slow. For me I didn’t even begin to feel much better until I’d taken a couple of months of antibiotics. Progress has been slow but steady and I dread the thought of only being given 28 days of antibiotics. I wasn’t anywhere near recovered at that point in time.
I’ve been off and on antibiotics for a couple of years and I can say I do feel significantly better when I’m on them. I really try and stay off them but I do notice a cognitive decline when off for a long period of time. A course of antibiotics does help the symptoms.
For me I can say I feel like chronic Lyme is a reality no matter what the IDSA says.