It feels like I’m talking about someone else’s life, sometimes, when I go to write about this.
So, in my last post, I said I’d give myself another two weeks off treatment and then re-evaluate my state of health to see whether or not I should restart treatment for Lyme disease. Something happened to help me make that decision.
I got an ear infection. Just a minor bacterial one which I get about once a year if I’m not already on antibiotics at the time. (Well, at least compared to a VIRAL ear infection, they’re minor.) I’m a miniature pharmacy so I already had the Z-pack needed to treat it.
I took one pill (and you’re supposed to take two at first, but I didn’t think that’d be smart for me…I was right) and spent that night feeling unimaginably ill while trying not to have a mental breakdown.
Fellow Lymies already know this, but: Zithro is the cousin of the medication I’ve been on (Biaxin) to treat Lyme disease, and also a potent treatment option in itself, so taking it affected a lot more than just trying to help my ear. There was fever, chills, constant shaking, dizziness, numbness, nausea, and a host of other things, like not being able to remember my best friend’s name (?!?!). But the real “kicker” was that I felt that way from just one pill…
After being off meds for a month and a half, I can’t even handle one pill. :|
I can only handle half-a-pill, which is less than a child’s dose, and I can only hope it will be enough to cure my ear infection… But it’s definitely not enough to treat my disease. If anything, these tiny half-doses may keep things from progressing too quickly, but will also make me a target for drug-resistant bacteria, and then talk about being in a mess…!
This does take away the choice (mostly) of whether to begin treatment again or not, because it’s obvious I physically cannot do it, and mentally, I am still so, so tired.
Toward the middle of November, I thought I was doing better. I left the house three times in a week, and (not the same days, but) I had three consecutive days with no pain. So I thought I was getting over the relapse, until this happened. I was just a little crushed… But it is what it is, right?
I’m not sure what’s going to happen from here. My friends say I can always begin treatment later after I’ve rested a bit more, but this is the equivalent of waiting until a cancer is stage 3 or 4 to begin treating. The disease is advanced, it’s harder to kill, and the treatment will be that much worse. (And the Lyme disease is stage 3, meaning it’s.. everywhere. And it does not wait for you to be able to handle antibiotics.) But regardless, this may be my only option, and all I can do is hope that with more rest, I will be able to begin treatment again in the future, and be able to handle it.
If not, well… C’est la vie, que sera sera, and all that jazz.
I stopped doing the ability scale checkpoints because they are a reminder of how I haven’t made much progress since finishing bartonella treatment. Now, I don’t want to make that sound mediocre… If that disease was still present, I wouldn’t even have the luxury of wondering whether or not handling treatment was an option; I’d just be dying very quickly again!
But the truth is still that I kept waiting for a stable period to make an assessment, and that has yet to happen. I repeatedly had to pause treatment, take such-and-such different medication, take this-and-that medication to balance out the first one, then relapse, recovery, relapse again, and whatever progress I did make, I just kept going downhill again.
I made my last checkpoint at the beginning of this year and I can honestly say I am still at that place, in general, with the obvious adjustment that my symptoms are more severe for the time being due to relapse. But at least I am not any worse than that. I like being able to breathe and walk on most my days. And I do think I am a bit recovered from this relapse that began at the beginning of October.
I can handle longer periods of light, I can be out of bed more, and I have longer stretches with less pain. The translation of that is: I can usually use technology for several hours a day instead of bursts of twenty-minutes until I couldn’t bear it anymore; I make it out of my room several times a day instead of barely once, and sometimes I can leave the house; and my “usual” needed dose of pain medication is once a day, instead of always twice a day…and I have random days where I don’t need any at all. So,
- without intervention of medicines like caffeine (which is the only thing that enables me to do things like take a bath, or have a stable blood pressure), or pain medications (which are the only reason I can be active at all); and
- with 100% being completely recovered,
I am currently at 15% physical ability and 20% cognitive ability. As we all know, there are better days and worse days, but in general…
And with 100% meaning completely symptom-free, I am at 10% symptom severity. Though I think the chart should be in reverse for that section, because initially “10% symptom severity” sounds as if I only have symptoms 10% of the time, and it’s the exact opposite I contacted Jodi about this and she switched the chart around, so with the new version, I’m at 8/10 severity level:
“Moderate to severe symptoms (6–8) at rest. There is moderate to severe pain (6–8) and/or sensations of illness/dysfunction throughout the body and brain for much of the day. Symptoms are severe (8) following any physical or mental activity with a recovery period as low as hours, or as long as days to months, or longer. It is all the person can do to just get through one day at a time.”
Thankfully I do have medications to help me get through this difficult time, and all the support in the world from my friends, fellow spoonies, and doctors, about whatever decision I have to make. (My family unfortunately has no idea of the magnitude of this… Right now, I’m not sure I’d want them to know, until I can give them an idea of what we’re looking at…) And I have an appointment with a pain management specialist next week, and I see my Lyme disease specialist on the twelfth. So this is where I am at!
♥ a rainbow at night