Treatment Recap: Month 2

Well, I had my 3rd appointment with my LLND today, which means I’m getting ready to start my 3rd month of treatment. It feels like I’ve been at this so long already, it’s hard to believe it’s only been  ~8 weeks.

The good news is, I am seeing some improvement already. I don’t get bloody noses anymore (used to get them daily). I can bend over at the waist and get back up without holding onto anything! I’m not experiencing brain fog or confusion nearly as often. And when the doc asked me today to spell “holiday” backwards, I rattled it off with relative ease. (Last month “music” backwards stumped me something awful, so this was thrilling.)  There’s a ton left to check off the list, but since I didn’t expect to see any results this early, I’m really pleased to have this much to show for it.

Month two was an interesting one! I ended up quitting minocycline because I was having horribly blurry vision. After 7 weeks on the drug at low doses (only 50mg 2x a day), I could see clearly only about a foot or two in front of me. I couldn’t read street signs, didn’t feel comfortable driving, and had even given up riding my bike. Reading presentations in the conference room was becoming impossible. Not good. And it didn’t seem like a herx to me, because my other herx symptoms had come and gone while that only got worse. Maybe it was intracranial hypertension, maybe it was just a side effect. Who knows, either way I’m glad to be done with it. My eyes started to improve after about a week off of mino.  I felt a LOT of relief.

I switched mino for doxycycline which gave me a herx from hell. TERRIBLE head pressure. I had such pain at the bridge of my nose, my jaw joints, my temples and the base of my skull. At the start of doxy, I had to spend several days lying down not moving. And, ironically, this also came with blurry vision! For a moment, I thought I’d have to quit this drug too. But I ended up backing off my dose, changing from 100mg 2x per day to 100mg 2x per day only every other day. This head pressure and poor vision did indeed turn out to be a herx, and it did fade after the first week on doxy at the lower dose. Phew. Eyes are still a bit blurry, but way way better than they were before.

Month two also brought on the treatment of Bartonella for the first time. With Rifampin and berberine, I’ve been  herxing off and on all month. I suspect that most of my symptoms are actually down to Bartonella more than Lyme, so this isn’t terribly surprising. For me, Bart herxes have included:

  • Exaggerated emotions
  • Fight/flight response (especially middle of the night)
  • Anxiety and fear
  • A little depression
  • Numbness  or burning sensations in my hands / feet / face <– most persistent

I even had one day where my right foot just felt wet… like it was in a puddle. I kept touching it to see if I’d spilled something but it was bone dry. Coinfections are so weird man.

In month three I also saw a Lyme literate optometrist here in Seattle! He was amaaaaaaaaazing. After so many weeks with drastic vision trouble on minocycline, some continued (but far less scary) vision trouble on doxycycline, and my concerns about intracranial hypertension, I was pretty freaked out by the time I landed on his doorstep. I was worrying about whether treatment had done permanent damage to my optic nerves, whether I was going to have to quit treatment, and if I did, whether I’d ever be able to get well at all. Ugh. I was definitely wound up. But he knew Lyme, he recognized all my meds, he knew exactly what risks they posed to my vision health and was able to test for each one of them.

Thankfully, he confirmed that the treatment to date has caused NO permanent damage to my optic nerves. What a relief! He did agree that it’s possible I was having some intracranial hypertension, but it hadn’t so far caused papilledema, which is a swelling of the optic nerves (and the only potentially permanently damaging outcome of IH). Phew! He found one major contributor to my blurry eyes, and it’s a simple one. I’m a teeny tiny bit cross eyed. I never was before, but apparently when you get so bogged down with infection, and fatigued, the muscles around your eyes get worn out and struggle to hold alignment. When they go just a bit off kilter, your vision blurs. This explains why my vision is better in the morning and worse at night! What a relief. This will easily get better as my infection gets under better control and my energy levels rebuild. Overall, after my visit with this doc, I felt incredible relief and waaaaaaay more confidence in continuing my treatment.

Thankfully, month three looks like much of the same. I’ll continue to treat Bartonella just as I was. I’ll be ramping up my Lyme antibiotics more. I’ve got to work up to Doxycycline at 150mg 2x per day, but I’ll do it slowly. First I’ll work up to taking my current dose (100mg 2x) daily instead of every other day. Once I handle that, I’ll try to get up 150mg 2x. Slow and steady! With any luck, I’ll see some solid improvement here at the end of the first quarter.



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