Lyme lyme lyme: An insane day of flaring

I awoke at eleven in the morning and went back to sleep. My father brought me coffee at noon. :) I “got up” (read as: halfway sat up, turned on my stereo, and stayed awake) because I had to take my Rifampin, having taken my Doxycycline dose an hour earlier. I did take my Rifampin, and… WOW. I could not have had a worse “Lyme day.” I may as well have been a spirochete! I am most definitely beginning my Lyme week. (Note: My Lyme week is what I call the time of month where the bugs are replicating and/or cause me worse symptoms for about 3-4 days.)

It started with a “head shake tremor” (and no that’s not a clinical term), or, the thing where it’s as if you are slightly shaking your head to tell someone “no,” but it happens on its own.

Then I started to have tremors in my limbs, as well. Visible tremors, not just the “internal tremor”/buzzing sensation so common in Lyme disease.

About twenty minutes after that, I had progressed into full-blown movement disorder mode, complete with more violent head shaking (which was more of a whipping back and forth at this point), “hand curling” (as a lot of us Lymies call it), and dystonia of various parts of my body; all on the left side, as per usual. Also as usual–and I only admit to this because it is a documented thing with dystonia–touching the back of my neck gave a momentary reprieve from the dystonia-related things. Ironically, my face wasn’t too involved this time, so not much involuntary grimacing.

This went on for quite a while–two hours, at least–but I’ve been doing this all day. The tremors have died dow, but my head and neck still have a mind of their own. I’ve made a few attempts to walk, but my left leg just drags because it freezes up. Or, on that one occasion, it went into the air all by itself! (I know you fellow Lymies know what I’m talking about!!)

About four hours after all of that, the pain started. Headache. Numbness in face. Various pain meds to counter it: didn’t work. Ended up taking half a Lortab, and once again got the effect of being less sick in general. Thank God. So there I was, headache thoroughly medicated, plugged up to my supplemental oxygen via my new 25 ft cord, sitting up in my wheelchair, and tidying things up around my room. Because tomorrow I start my full dose of Doxycycline! I’m both excited and nervous, but my mother found some sparklers for me! ;) I told her I wanted balloons again, to thoroughly celebrate starting “phase two” of my treatment–hell, to celebrate that I even made it to phase two of treatment!–as, God willing, this will be the regimen I’ll be on for the next five months. After that, I’m going OUT to celebrate!!!

What I can’t figure out, though, is why a bartonella-specific antibiotic accelerated my Lyme symptoms? Rifampin doesn’t have active killing-properties against Lyme, but my LLMD did say it works on the cystic form; i.e., it causes those latent tiger-in-waiting Lyme cysts to open up.

Or maybe this was just an especially potent herxheimer reaction because my bartonella flare was only yesterday. I also sometimes wonder, since Rifampin is also treating my Mycoplasma pneumoniae and myco symptoms can be insanely similar to Lyme disease–even down to similar replication cycles–if some of this is a mycoplasma herx. Or maybe it’s both. That might explain the severity, yes? (Doxycycline is also a primary treatment for Mycoplasma.)

Today I have had a lot of air hunger. I feel a constant need to yawn. It rarely helps. Fever. My back hurts. My legs shake when I try to walk to the restroom…which would concern me, but, Lyme week and all, right? Oh, and I remember mentioning to someone that yesterday my shins were hurting? My feet also began to hurt, all night. Today they are all right, and although my shins were still a little achy earlier in the day, they do not hurt anymore. I’m having arm numbness, and I’ve noticed whenever I have severe headaches, the numbness comes with it, so there’s that. Is it tomorrow yet?

a rainbow at night


2 thoughts on “Lyme lyme lyme: An insane day of flaring

  1. Horray! *cheers for you, throws streamers and balloons and dances* I’m so happy you’re up to your full dose today. I remember when you weren’t on any antibiotics and you were finding the candida. SO glad you’re fighting the Bart and Lyme now. That’s really amazing, and you’re doing amazing fighting this. You can do this, and at the end of those five months, you should take pictures of you going out! :) It will be wonderful! But, I’m sorry you are doing so badly now, and I’m thinking of you. I get all those symptoms too, and some of them can be pretty unbearable. :( Wishing you good things: good food, supportive people around you, distracting television, and sugar-free treats while you fight this thing. Glad you could tidy your room! I find having an organized room means so much to me in terms of quality as life….as weird as that is, it’s so true. :)


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