Things have been going incredibly well since I stopped my medication in October. However, I’ve always thought of myself as “in remission” and tried to act accordingly (protecting at least some of my healthiest habits). Despite that, the call of a job I love, the needs of my children, and time have slowly eroded these (I am not currently doing yoga, using the sauna daily, sleeping more than an average of 7-8 hours a night). Some symptoms never left (such as ringing in my ears) which I attribute to side effects of the medication.
Things seemed great despite this, but about two months ago I started to notice some changes. Occasional dizziness. One day where I needed to sleep sleep sleep (4 extra daytime hours). Another day where I napped for 3. A day where walking up a flight of stairs left me out of breath for what seemed like 10 minutes. A week where I napped for 20 minutes almost every day. A couple of instances of more extreme dizziness. And then this week hit.
On Wednesday, I felt the head thing. The one I can’t describe accurately to anyone who hasn’t had it. Where it feels like the skin on the back of my head has expanded, it almost tingles as it flows out from my head in a constant stream. As if I am floating, just a bit. Yet my neck feels weaker, my head hard to hold up. Maybe lightheaded is a good word for it, at any rate I tend to move slower and feel less secure. Every time I got up that day I was dizzy. The energy to move around my work place seemed nonexistent. And by the end of the day I shifted to using a cane. I went to bed relatively early, and by Thursday things seemed back to normal until evening when the head feeling returned. Early to bed again, and then today it returned again. Better than Wednesday, but I was short on energy and had trouble finding the strength to sit upright (hold my head up).
Needless to say, I’ve been doing some soul searching trying to figure out what’s going on. The optimist in me wants to just ignore it and keep being myself. The realist knows I need to make some changes. I’ll be in NY in less than two weeks. Should I make an appointment to see my LLMD again? I know what he’ll probably say — back on the drugs. I already had the sense from a colleague at work that she wouldn’t understand if I decided to do anything but that. Suddenly I am aware of a new way in which I can be judged for my illness — it’s her fault if she’s getting sick again, she’s not doing the right things, refusing treatment, etc.
But in reality, I have good reasons for thinking carefully before I jump back into antibiotic treatment. First, it feels like it’s a cop out — it means that I’m giving up on finding a real solution for keeping Lyme in remission (besides going on heavy duty antibiotics every time it re-appears, and remember I’ve only been off for about 6 months now). Second, my first treatment had significant side effects. Not as bad as really bad Lyme disease, but stuff I may have to live with forever that really does affect my quality of life (I have a constant, annoying, high pitched ringing in my ears. Not only does it sometimes keep me awake and deny me (a musician) the joys of silence and the simple enjoyment of unflawed sounds, but it affects my ability to hear. I miss things and find it almost impossible to listen to one person when another is talking. Then there’s the short term things like black teeth, possible other sicknesses (systemic yeast), possible organ damage, and so on and so forth. Clearly another solution would be preferable.
Problem is, I don’t have other solutions that are proven to be effective. Question is– do I have a window of opportunity to try something, now, while there’s a lightweight maybe going on in my system, that wasn’t available when I was so sick last time around. And what do I try? Just the basics (yoga, sleep, etc.)? Some sort of herbs (pick one, do it, see what happens?) Another doctor (who knows this stuff) or do I work out of a book? Something else I haven’t thought of?
Of course it’s possible that this is temporary (maybe the spring weather triggered it and once I adjust to actual sunlight it will go away again), or caused by some sort of cyclical permanent neurological damage (in which case I need to give it time, not medicine), or something else entirely.
What I know it is not, is simple fear. Fear of falling can make it harder to move forward, and I certainly have feared this eventuality. In fact, my fear may be making a temporary thing seem like a full blown relapse. But once again and forever I have to remind myself: I did not cause this. When I am healthy, I am healthy, despite any fears, and I love the things I do with my health. When I am not, it is because something changed. Wish me luck figuring out what, why, and how to change it back!