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Lyme Journal – General Update

The last update I made was at the end of June, and honestly, I was having trouble keeping up with a daily journal, because some things stay the same, but when things change, they do so quickly and then go back, so I forget about them if I don’t have a notebook handy, and I usually don’t.

However, some big things have happened as of late.

I mentioned that a person I’m close to was in a domestic dispute on the 4th.  The perpetrator turned himself in on Monday, is probably out on bail, now, but he now has an arrest on his record for domestic battery (as well as public assault, given where it happened).  I am not 100% confident in my shooting skills right now, but I am a “safe house” for the person who was abused, and thus am carrying my loaded XD-9 with me throughout the house when I can leave my room, which brings me to my next point.

The stress of that, an argument with a good friend, and figuring out that I was having an actual personality change from my medication (I was like the freakin’ Hulk – just angry and frustrated at the world, and was letting it out at the wrong people…the ones who are actually close to me and helping, which is part of what the argument with the friend was about), have, I believe, caused a couple of serious issues.

The personality change in and of itself is an issue – it indicates swelling of the temporal lobes.

I had a seizure on Monday night, while I was streaming video games.  Here’s a highlight, less than 5 minutes from me cursing and interacting with chat to me barely able to speak or keep my eyes open as I let the stream know that I am about to have a seizure:

(Yes, I curse when I stream.  I curse, anyway.)  You can see that picking up the blue (soul) hearts creates a sound that makes me blink, I pause, then pick up the eternal (white) heart, which makes another sound that makes me blink, and those were enough to send me over into seizure-land.  I don’t know why I looked to my left, but it was involuntary.  All I was thinking while my eyes were closed was, “My webcam is still on.  I don’t know what to do.  My webcam is still on.”  I finally got those words out, and that was that.

The chat was full of people saying, “I think she fell asleep, lulz,” but when I started talking, the OH SHIT spread like wildfire.  My mods know I’m in treatment so they calmed the chat down until I came back and said I was okay, and then I streamed, talking-only, for like, 30 minutes explaining to them what had happened (I’d gotten a lot of new viewers from raids from other channels, so they had no idea what was happening) as well as educating them on my condition and Lyme in general.

I had another seizure later that night.

I then basically lost the ability to speak.  The words were there, but I could barely get them out.  This is still Monday night, by the way.  I was communicating with Forrest using a text document with 48-pt. font, because typing and listening weren’t affected…it was just like there was a wall blocking speech.  It sucked.  I also lost the ability to read an analog clock.  It was so surreal, I can’t quite explain it.

Tuesday, I was better, speech-wise.  I participated in a friend’s stream via call, because I found that the more I spoke, the easier it became, and the more silent I was, the harder speech was when I tried to talk.

Tuesday, however, also began another quite scary situation.  My endurance has been leaving me, but lately I’ve been having what’s called “air hunger” – it, along with heart palpitations (basically, it feels like an anxiety attack that’s just relegated to my chest, like I can’t get enough air) actually indicate one of two things:  congestive heart failure and/or inflammation of the pleural sac, OR a swollen brain stem.

Given my mood changes, I’m going with the latter.  If it doesn’t improve in the next couple of days (or gets worse), I am going to the ER.  Otherwise…what are they going to do?  My LLMD hasn’t called me back, so I’m going to use my own best judgment to decide when ER needs to happen.  Right now, I’m okay as long as I stay seated or laying down.  It’s standing up that does it.

Another possibility is blood pressure being too high due to the antibiotics, but I don’t know much about that.

I am facing my first period in a couple of years without the aid of lortab, this week.  I don’t know how that’s going to work, but I’m willing to bet that it’s going to be ugly.

Oh, and I got a letter in the mail, today:  My pap smear was NORMAL.  The weird cells were just that…weird cells.  Further testing revealed nothing of any significance.  No cancer, not even pre-cancer.  So no worries about that, any more.

Um…not much else to report, except that mosquitoes apparently find me delicious as of late, and this confuses me.  I’m also reacting to their bites, again, which is different from before abx treatment.  I feel this is notable, for some reason.

That’s all for now, because I have a headache, and I’ve written over 900 words.  Bleh.



10 comments to Lyme Journal – General Update

  • Rob Reed

    Sorry to hear about the ongoing issues. Sounds scary. Hope the treatment goes well.

    One thought: Next time you have an episode where you lose the ability to speak, have you considered trying to sing?

    I’ve read of people who lost the ability to speak (for various reasons) who can still sing. Not just “songs,” but sing what they want to say.

    My understanding is this is because another part of the brain is involved and it’s essentially a “hack work around” for problems with the speech center.

    Just something I thought I’d suggest.

    • We had this discussion via FB message, but I’ll repost the stuff here:

      When I have my “foreign accent” issue, I can’t sing, because the “foreign accent” is due to the muscles in my mouth not working properly. When I can’t speak, due to temporal lobe stuff, the occipital lobe, which is responsible for muscle memory, works, so I can sing.

  • Geriatric Cat Wrangler

    i’m walking around on stumps (not really) because my feet and legs got eaten up on sunday when jan and i were outside after dark, and i, as usual, scratched the bites raw. there has to be a better way. hot water only works so long.

    • I use hydrocortisone cream. It seems to do the job well enough, but yeah, I have a spot healing on my arm from where there was a particularly nasty bite, and I couldn’t help but scratch.

  • Hooray for normal PAP smear! Boo on the rest.
    Keeping my fingers crossed that nothing gets worse

  • Joseph

    Quite a list of symptoms…are there no meds to help with the brain swelling, or is it a case of more meds would make things worse?

    • Well, there’s a battle, is how I’m looking at it. The antibodies that I do have, with the antibiotics, are waging war with the Lyme, and wherever they fight, there’s an excess of cells trying to clean out the toxins caused by dead Lyme and dead lymphocytes, so there’s swelling. So it’s a case of the meds causing it, and I’m still not sure what to do. I’m trying to get a hold of my Lyme doc to see what can be done…I need an MRI, just don’t know that I can afford one, right now.

  • Thanks for the email update as I’ve not had a schedule I can regularly check the blogs. It was good to hear from you. Good news on the Pap, hopefully the rest can be dealt with.