The trouble with words and Lyme

00001One 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

The drug is supposed to elevate synaptic concentrations of dopamine in the brain. It changes the serotonin levels in your brain as well.

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.

What would you do?


  1. I recognised myself in your words. I would encourage you to keep on writing and then return to your work to edit until you are satisfied. It elongates the creative process, but allows you the satisfaction of knowing that you are producing work to a standard that you want. One word at a time, one day at a time. Wishing you a wonder-filled 2013.

    • Thank you so much for your words of wisdom. I fully agree that there has to be an effort to make each day a creative day. Thank you for taking the time to let me know that I am not alone.

      I think we all need to remember that we are part of a vast community of stars and none of us are ever truly alone.

      • You’re welcome Crysta. Sometimes, the pain isolates us and makes us forget that we are one of many. For me, incorporating music and writing in my life every day is a way of maintaining my connection to the world about me and reminding me that pain is not the only thing that I can experience – dulled though my senses may be.

  2. I recognize myself in this too. Including the “trade off”…I feel that same trade off at times. And also have many of the same neurological issues you speak of. Love your
    blog, will keep visiting!

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