Planning for Pain

Last week, I visited my doctor, and we decided to resume some antibiotics. Back in September, as I prepared for the Butt Injections of Antibiotic Doom, I discontinued all oral antibiotics. The shots are a lot for the body to take, so I needed to stop taking the other drugs. When we decided to discontinue the shots, it seemed natural to not add anything back in, so I could see how I felt without it all. Mid-October – mid-November was great, but I’ve been in various shades of rough shape ever since.

A couple of the antibiotics that I took previously – rifampin and azithromycin – seemed to do a lot for me. They sparked obvious herxheimer reactions, and some of my best stretches of feeling pretty good were when I was taking them. I was not on either of them for more than a few months. So it seems like a good idea to give them another go. It is also common Lyme practice to continue treating with antibiotics for a while beyond when someone starts to feel better, so even more reason to give those drugs a little more time to do their work.

I started one on Monday, thinking a herx might hit Wednesday (it had taken two days to hit when I took it last year), a day my son would be in school, and I would be able to rest if needed. I imagined I would leave a little more time before adding in the other drug to see how that went, but then I realized I would be risking a weekend herx (and we might get snowed in, here in the Boston area), and I don’t want to wait until next week because I need to be on both drugs for a good stretch of time before my next appointment, so I settled on Wednesday to add in drug #2.

This is life with Lyme.

I realized on Tuesday, with horror that my perfect Wednesday herxing plan had a flaw – I had plans to see a movie with a friend that night! Oops! Too late – drugs were already on board. But it worked out okay! One of the tough things about herxheimer reactions is that one never knows what form they’ll take. Will I get knocked out by can’t-keep-my-eyes-open fatigue? Will it be searing joint pain? Will it be brain fog so dense that I keep forgetting what I’m doing and have trouble with conversations? It’s like a really depressing lottery drawing. For this herx, I was treated to a symptom I hadn’t experienced in several months – the ice pick headache!!

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In bed with ice pick. Bangs are so useful for covering droop.

The ice pick headache was one of my very first Lyme symptoms that started back in September 2014. By half way through 2015, I wasn’t getting them at all any more. Two days of rifampin, and BAM, woke up with an ice pick through my forehead. The pain waxed and waned through the day. Fatigue was present, but not crushing. I rested in the morning, after which I was able to run an errand – though I did skip taking the train and schlepping my purchases home, opting instead for a car service to conserve energy. I used the remainder of the afternoon for more rest, and was able to really enjoy my night out with my friend.

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Out with the people! In the night time!

Some days, the Lyme wins. The fatigue is too intense, the pain too severe. But some days, with careful care and planning, I can work through the pain, fog, or tiredness and live a bit.

**If this is a bit disjointed, apologies. Lyme brain in full swing**

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