With normal illnesses, you know when you are well. Sometimes, your doctor will tell you, "When the labs come back normal, we will know you're in remission". Or maybe, "When you stop itching, you aren't contagious anymore". Or even, "the absence of the horrific odor means the infection is clearing up". All of these seem fairly logical, self-explanatory. However, we patients rely on some sort of bar to be set, some series of accomplishments, to know we are well.
Relying on our inner voice doesn't seem to play into it with Lyme.
With Lyme, docs are a little different. Most of the ones I talked to (all THREE. Which is actually a lot, because very few docs treat Chronic Lyme-there's only 2 in the Northern part of CA that are within 3 hours of me) have a very strange set of achievements:
- Symptoms need to be gone, or significantly diminished
- Then wait several months, continuing to treat the infection
- Then suffer some sort of major upheaval in your life that would normally put you into a tailspin
So, in the "moving forward" part of my life, I have gotten some energy back. Which means I have filled up my calendar like a fat man at a gravy buffet. Which means I have struggled to keep my head above water. It's what I do-get sick, chill, feel well, over-do, get sicker. Lather, rinse, repeat.
So I've been taking a break from being me. It's been tough, what with all the opportunities to be batshit crazy jumping in front of me.
But if I am perfectly honest with myself, my pain is ssssssllllllooooooowwwwwwwllllllllyyyyyyyy getting slightly more tolerable, when I'm not overdoing everything.
Also, I'm not twitching QUITE so much. When I sit still at night, I actually NOTICE when I twitch, which means it's not happening so much that I am immune. Progress, I say.
And, I've been able to tolerate things that make me feel worse, with the intent of getting better-hot tubs, for one. They make me ache. ACHE like a motherfucker. The whole next day, plus some added angst-y limbs tossed in. And this is all good. I swear.
SO, all things considered, I can still tolerate massive amounts of antibiotics, without horrific side effects. And I can abuse my body with heat, and survive. Sounds like win-win to me.