It is often said that treating Lyme is like peeling the layers of an onion. Because Lyme effects multiple body systems, and Lyme bacteria changes form throughout treatment, recovery can feel like a roller coaster. The herxheimer reactions as bacteria are killed, releasing toxins that make you feel worse, happen again and again with each “layer” of treatment. Throughout treatment, medications need to be switched up because over time, the different forms of bacteria can hide from or adapt to antibiotics. I write this on a foggy day, so I hope I am making sense.
What all of this means is that it is hard to know how I will feel day to day, week to week. My most problematic symptoms rotate. For examle, earlier in my illness, lower back pain was daily. Now, it is rare. For a while, my short-term memory was horrible. It got better for a time, and now when I have bad days it is poor again. My drooping right eye, ear, and shoulder, and accompanying arm and leg pain seemed to be improving for a while, and now they are acting up again.
I experienced my last big herx a couple of weeks after a change in medication protocol. Now again, things have started to change. Several days ago, I started to go downhill, and it was, like clockwork, a couple of weeks after a protocol change.
Experiencing a resurgence or intensifying of symptoms is frustrating, and can feel like going backwards, but is actually progress. It means something is happening. I like to imagine that some of my neurological symptoms flaring means nasty Lyme bacteria in my brain are being attacked – it hurts now, but hopefully that means good days that are even better than previous good days are ahead.
Layer by layer, on the road to better.