An absurdly long time since I’ve posted.
Partly because a lots been going on, but also because not much has been happening. I’ve been too busy for small updates and nothing major has happened with my health to warrant me sitting down and writing. But now it’s Memorial Day and I’m just sitting here in Cape Cod watching the tide ebb out of Town Cove. Thought I’d type up an update.
Antibiotic treatment continues
Of course it continues… seems like it’s never going to end. I’ve more or less abandoned the IV idea for now. At the very least until the summer is over. My LLMD agrees. I was denied outright by my insurance company (Aetna) and don’t have the mental energy to fight with them over it right now. If I was suffering horribly and/or bed ridden then I might have at them, but with the way life’s going right now I’m cool with letting it ride on the orals.
Instead of the IV, I’m sticking with the new coinfection regimen of Rifampin, Mino, Zith and Mepron along with Diflucan for yeast (and maybe Lyme). I herxed my head off when first switching to the Rif. It’s a wicked drug. In the first week or so of taking it there were times when I felt utterly and completely out of my mind. I experienced dramatic shifts in my emotional state on almost a continual basis. An hour of fierce anxiety and worry would blend into two hours of intense, almost manic attention on something. When I was focused on work it was a good thing, but when my brain decided it was time to, say, organizing my closet it was a fruitless and frustrating time suck.
It was as if my id sent my ego and superego on vacation. He kicked back, opened up a cold one and grabbed the controller of the PS3 that is my life. My usual laid back attitude was replaced by a pushy determination to get what I wanted. I feuded with store clerks, flogged a customer service representative and pretty much hated on everything my wife did. I don’t know how she put up with me.
I also found it almost impossible to stick to any sort of plan or schedule. My brain just took my body wherever it wanted to go regardless of how many to do lists I made. I would be fully aware of the fact that I had something to do, but if my id wasn’t interested enough to take action, we’d end up doing something else. I know this sounds pretty idiotic, but it’s true.
Luckily, this behavior faded after about two weeks. I’d have moments of anxiety or manic feelings, but they’d pass. Now, after about seven weeks it’s all settled down into a seemingly cyclical series of herxes. It’s too soon to nail it all down, but I seem to feel something every two weeks or so.
Smile, Bart! You’re on candid camera!
One major turn of events occurred last week when I went to see my LLMD. He’d sent some blood off to Fry for Bart and Babs testings during my previous visit. The results were back and I got a nice little photo of one of my red blood cells harboring some Bart — or “bart-like organism” as they seem to be being called these days.
This was kind of epic in a way. Even after all this time I’ve really only been 80% sold on the whole Lyme and friends diagnosis. I don’t exactly know what else it would be, but since I (A) never saw a tick (B) never saw a rash (C) have never been that sick other than the first 2 weeks of illness and (D) haven’t had any dramatic improvements after a year of treatment, the whole thing has been a little hard to buy into 100%.
When my LLMD handed over the page with the photo on it was like everything else just stopped. He kept talking, but I couldn’t hear anything. Meeting the little dark squiggle inside my red cell was like meeting the psychopath that had murdered my family. For a brief second time slowed waaaaay down. I was emotionally torn between shredding the paper with my hands or crying into it. It was unnerving. I just kept staring at it and thinking, “you little motherfucker.”
Anyway…the picture sold me. I’m 100% sold on the idea of some sort of tick born infection. I finally feel comfortable that I’m on the right track to getting healthy again. I still wouldn’t be totally surprised if something else came up down the road, but for now, I’m comfortable with the path I’m on. I’ll post the picture later in the week when I get back to Brooklyn.
That’s all I got for now. There’s some more (good) news about training and such. I’ll make another post about that later.