Sorry I’m ending these posts with a question mark, but I honestly just don’t know what the hell is going on, right now.
Okay, so my run-of-the-mill Lyme test came back negative.
Before I celebrate, there are a few things I’m keeping in mind:
- these tests are inaccurate as hell (see: test that said I was negative last year, when I had way more positive bands on a comprehensive test)
- it can’t test for Lyme in my brain
- I’ve been on so many antibiotics that the Lyme could be hiding and waiting for a safer time to come back
- I know far too many people who’ve had negative tests and then have relapsed horribly
That second point up there is something we’re going to try to work on. I’m getting a neurologist referral, as I said (I need to call and remind them of it), and I’m going to let them know my symptoms, and see if an LP is something that should be done, as well as the MRI to test for damage.
I’m also going back to the Lyme doc in 3 months, and depending on how I feel, I’m going to get another basic Lyme test, to make sure the third point isn’t the case.
As for the first and last points – those are things that are unfortunately demonstrable and that I’ve seen too much of to be able to quell my cynicism.
So what I’m telling people, right now, is that I’m in “remission” – that, right this second, the test for Lyme is negative according to the popular method.
There’s anywhere from a 70% to a 95% relapse rate for Lyme infections, though, so you understand why I’m not throwing a party, even if that negative test is accurate at this time. To compare this to cancer, stage 3 ovarian cancer has a 70% relapse rate, and “distant”-stage bladder cancer (which is REALLY rare) has a 96% chance of killing you within 5 years (I couldn’t find a statistic for a recurrence or relapse that was 95% – they just straight up say “dead within 5 years”). So while Lyme may not directly kill you, this is why so many other people and I will describe Lyme in terms of AIDS-like activity. Once you get it, and it has a chance to get its claws in you, it never really goes away. The people with the lowest relapse rate are those who caught it early and treated it aggressively.
This is not to say that everything I’ve done this year is for naught. I’m not saying it was all worthless, nor am I saying I’m just completely done and omigod-doom-and-gloom. I’m not. I’m actually going to try to work a bit this summer (a couple of days a week), and I’m going to keep close tabs on how I feel while sticking as best I can to the gluten-free diet.
I’m REALLY hoping that most of my side effects in terms of my legs not working that well, and my endurance, have been because of the antibiotics, and me being off them will improve that area. Because I’m so tired of being tired.
As a side note, I’m house-sitting right now, and I have to walk around a good-sized yard to take care of chickens of all ages while also making sure a dog is fed and watered, all while cooking for myself, cleaning up, and taking care of cats indoors. This is my first day, and I feel like hell. I’m so sore that I find myself wishing I had some lortab to help me sleep, because my legs and particularly my Achilles tendons hurt so freakin’ badly. I’m also running a charity stream, and I have to be present in chat for most of my waking hours, and I’ve had to sub for two missing streamers, already (a total of 3 hours, because thankfully I’ve had help splitting the 3-hour slots), so I’ve spent much more active awake-time this weekend than I normally do.
I’m not trying to push it – the house-sitting being at the same time as the stream was total coincidence – and I might be REALLY sorry at the end of the weekend, but the fact that I was willing, even before I knew I was stopping the antibiotics, to come out here to the middle of nowhere and house-sit, should show some of y’all that I’m really not content with just sitting on my ass.
Anyway, we’ll see how I feel. I’m mostly concerned with permanent damage at this particular moment in time, but of course relapse is always at the back of my mind.
I’m just guarded.
…um. *jazz hands*