One of the issues I have due to having CL is that my brain has suffered some neurological complications. I often have numbness in my hands or random other places, pain that pops up out of nowhere, weakness that comes on fast, visual disturbances, stiff neck, and severe headaches. Some of the more frustrating issues that I fight are due to Lyme encephalopathy. It is the most common late stage neurological problem related to Lyme disease. Lyme encephalopathy gives me decreased concentration, irritability, memory loss, and nerve damage in the arms and legs. But I have a great doctor and lots of support to keep up with the day-to-day.
I have been on a great medication that has kept my tremors down for almost a year now. I have had less pain in my joints and hands that would often come due to my muscles clamping down and reducing the blood flow. I’ve also been sleeping much better and able to get through most nights without discomfort or the tremors that were always worse in the middle of the night. Sleeping better helped me deal with my symptoms better during the day and my memory issues and concentration lapses were much less than before my meds.
But as with anything, all meds come with a price to pay and more and more I question how much I am willing to pay for the quality of life I wish to have. Side effects are never fun. Nausea, IBS, and weight gain are sadly a part of what it takes to keep moving, thinking clearly, and not suffering from the tremors that would shake through my whole body. Bu the worst of the side effects is the drug doing exactly what it is supposed to be doing for people who take it for conditions including: major depression, obsessive-compulsive disorder (OCD), Body dysmorphic disorder (BDD), posttraumatic stress disorder (PTSD), premenstrual dysphoric disorder (PMDD), panic disorder and social phobia (social anxiety disorder).[9
However here’s my issue. When I am taking my meds I function well, but the most frustrating side effect is the lack of creativity and my struggle with writing and words. Yes, I had a much more difficult time with thinking clearly when the Lyme bacteria was in my brain and the meds I am taking have a Anti-Fungal property to them and have pushed the Lyme bacteria, Borrelia Burgdorferi, out of my brain. Yet I can feel clearly the change in my writing and my creativity when my meds are at full strength.
So there’s the trade-off.. do I enjoy being a writer and artist and feeling music emotionally, or do I live with fewer symptoms?
It’s a hard choice to make and one that I am really struggling with from day to day.