Whew! Time flies. My first 4 weeks of treatment are complete. Overall, it was pretty much what I expected.
If you’ll remember, I had a HUGE herxheimer reaction on day 3 of treatment. It was exactly what I was most afraid would happen. But I did everything on my detox list just as my doctor had instructed me, and the worst of it did pass within 4-5 hours. I started treatment again on a lower dose of one of the 4 drugs, and things were much better. I still herxed. For about 2 weeks, my symptoms were worse. I felt groggy, and tired, sore and sort of out of it. But it definitely didn’t feel like an emergency or anything. I was able to work and keep up with really minimal social obligations, at least. There was a lot of Netflix and laying on the couch during this time. Toward the end of week 2, I started to feel a little bit better. Most days were my “Lyme normal”. I even had a couple of days where I definitely felt better than I had before treatment; better than my “Lyme normal”. These days were really encouraging. It’s enough to make me believe I am on the right path.
The only symptom of mine that got worse on treatment and that has stayed consistently worse is blurry eyes. It started when I went on minocycline, which is an Lyme-fighting antibiotic that crosses the blood brain barrier. My vision is so blurry now that I can’t read street signs (even the big freeway ones). I even had one day where I couldn’t crisply make out my own features in the mirror, or read text on my mobile phone. This is super troubling to me, but it makes sense. Lyme has done a real number on my eyes over time. I had very blurry vision before I was even diagnosed and treated; I was changing between 3 prescription lenses throughout the day and had had optic neuritis 3 times over the years (twice in my left eye, once in my right). It’s obvious to me that my eyes have been one of my most intense and consistent locations of infection. So when I added in minocycline and it traveled into my brain and started killing bugs that are living in my optic nerves, those bugs released toxins. My optic nerves are super inflamed from the combination of active infection and die off toxicity. They will probably stay that way a while. My doctor assures me that my vision will come back, I just have to be patient.
I begin month 2 of treatment tonight, so I expect the next week or two to be rough again. It’s funny, I’m almost as scared of herxing as I was when I first started treatment. Maybe this never gets easy! I was diagnosed with one Lyme co-infection, called Bartonella, so in addition to my Lyme-fighting drugs, I’m adding in Bartonella treatment this time as well. I’m as excited as I am nervous. I think (and my Lyme doctor agrees) that most of my current symptoms actually stem more from Bartonella than they do from Lyme. So this feels like a big important step in my treatment.
Only the brave prosper in this fight, so I’m taking the next step as boldly as this sick girl can manage! Let’s kill some bugs, folks.