Next Steps

Last week, I headed back to the doctor to check in, get test results, and look ahead.

My blood tests confirmed that yes, indeed, I have Lyme For Real and am Very Sick. However, they also confirmed that I am nowhere near as sick as I could be. That is an incredible relief. There were some interesting findings that I’ll need to look into further, but a good number of scary things were crossed off the list of concerns, at least for the time being, and that feels great! Little victory – gratefully accepted.

She was pleased to hear the progress that I’ve made, and said that as things look now, I will likely be able to get well without intravenous antibiotics. Hearing that felt a bit like being given a puppy – a really, really cute one. Based on all of my research about Lyme, I have known that with neurological symptoms, there was a really good chance I was headed towards a PICC line or similar intravenous set up. If I don’t continue to get better, it could still end up being necessary, but as of today, I have made progress, and it looks as though my case may not be bad enough to demand it. Little victory – gratefully accepted.

Something I was very surprised to hear is that I tested negative for ALL co-infections. I hardly thought that was possible! It is wonderful to think I am only fighting one “bug” and not many. However, like so many things about Lyme, there are more questions than answers when it comes to co-infection tests. They are not 100%. So, for example, if in two months my progress has stalled or back tracked, we might be faced with trying to figure out a co-infection that’s lurking within, but not showing up on tests. That happens frequently to Lyme patients, and so I don’t have an official, laminated Get Out of Co-Infections Free card just yet. For the time being, though, co-infections test is negative. Little victory – gratefully accepted.

The overall impression is that if things go well, I could be Better in a few months, which is very good news indeed.

Much more was discussed and reviewed, but those are the highlights. So what’s next? This:

$200 worth of shiny new pills! These are a combination of Lyme killer (one to attack another of the layers of Lyme, called biofilm), probiotics, and supplements. Plus one insurance-covered Rx, and another plain old vitamin.

A scene from my thrilling post-follow-up organizational session:

So many pills…such little compartments in pill sorters! Already, at my previous 31 pills per day, I was exceeding the limits of the two pill sorters I owned. Breaking through the 40 per day mark called for stepping up my sick girl accessory game. Voila:

A new protocol, a new schedule, a new storage system! Now I have every single pill sorted into its very own container for the 6 different times each day that I take something. This makes it easy to not only pop them quickly and mindlessly, but I can also easily see if there was anything that I missed.

More blood tests in another month, with a follow up shortly after. Until then, just keep plugging along.

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