Tomorrow, I’ll see a LLMD about taking disulfiram (antabuse) to see if it can finally wipe out my Lyme Disease infection. Maybe Babesia will get destroyed, too, if I can believe what I’ve read in the case study as well as message boards.
So much of what I’m worried about is the “too good to be true” problem with almost every Lyme Disease treatment/cure I’ve read about or tried. For the past year or more, I’ve been looking for a way to get the infections into some kind of remission, again, as I was once able to do with the coil machine. I’d given up on a cure that actually gets rid of the infections. Well, maybe not given up completely. Rather I wanted to get to a sustainable life, minimal symptoms, especially fatigue, that will allow me to do things not related to Lyme. If I could live that way, I could hold out for a cure for as long as it took to find one.
From what I’ve read, Lyme and Babesia are targeted by disulfiram. The reporting on Bartonella is mixed. But you know the old song, “two out of three ain’t bad.” I could still use the coil machine for Bartonella, and I’d have a much better chance of getting rid of it, if I didn’t have two other infections reactivating every month or so. (That was my situation in 2016 when I had several months of remission of Babesia and Lyme.)
I’m trying not to get my hopes up, while at the same time, I’m prepping myself for ugly herxes. I would settle for an extended remission. I will accept whatever happens.
But, there is the part of me that wishes and dreams. I wish I’ll be cured. I wish it with all my might. I wish to move my life back into a productive, rather than disabled stage.
I dream of doing so many things. Finishing half-done projects. Writing the novel I’ve been sketching out. Editing the stories I’ve written and sending them out. Illustrating a children’s story I wrote about my town. Writing to politicians about important issues. Going for a walk with the dogs in the morning and having enough energy to write or paint or share the hundreds of photos I’ve taken on a blog or in books for my family. I dream of spending the first year making real all the things in my head. That first year when I don’t really believe the relapse isn’t just around the corner. I dream of running. Yes, running or jogging or kayaking or hiking or swimming. Using my body without fear that I’ll overdo it and spend a week with cardiac problems and unable to get out of bed. I dream of learning to speak enough Spanish to converse with my neighbors and with the family members of my close friends. Without brain fog, I might be able to learn again. I dream of volunteering at the library or tutoring one of the neighborhood kids. Making commitments without worrying that after a few weeks I won’t be well enough to continue.
My dreams are big, after such a small life. And small compared to what I once hoped for. Because there are little things, too. I dream of clearing off my desk, getting to the bottom of the six to-do piles. I dream of making artwork on that cleared-off desk. Things to try and things to share. I dream of going to the protests in my town, concerning issues that I care about, without having to cancel at the last minute because of a migraine. I dream and dream and dream.
If I can manage a whole year without a relapse (or if I’m kind of well and the Bartonella is under control for that long) I dream of working again. It sounds so trivial. I miss work (sometimes). Particularly, I miss doing things that contribute to the world.
I dream of being part of the group that figures it out. Disulfiram is not an antibiotic. It is not an immune system modulator. These are the two ways we have to treat Chronic Lyme Disease. Neither one is affordable or works particularly well. I started this blog because I believed that there had to be a way to get back to a healthy state, and the coil machine helped me get there. But I couldn’t figure out how to cross the finish line on any of the infections. If I can be part of the group that figures out how to get rid of one (or two or three) infections…wow. I want that.
Even though my fear that this won’t work drags me down, the dreams keep bubbling up. I should be back to blogging for the next several months to keep track of the disulfiram experiment. Maybe, just maybe, this will be all I need to be done with Lyme.