Bartonella Herx


I don’t know if it is reality that struck me so much as Rifampin. This drug just makes my little heart so saaaaaad. Which, is such a strange place for me to dwell because I DON’T LIVE HERE. I don’t even vacation in this emotion. But here it is just sitting on my chest every day, pushing perfectly sweet air out of my lungs and leaving me gasping for what I just expelled. 

“Reality is no different”, I keep telling myself. Everything is just as great and just as hard as it was 2 weeks ago. The only thing that’s shifted is my brain chemicals. And they’ll shift back when this drug is through. And I will be ok. I AM ok. Even if it doesn’t feel like it right now.

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Wishes for my post-Lyme Life

Well, I don’t want to jinx anything, but my ramp into the new/old treatment protocol I mentioned in my last blog is going very well so far. I have successfully worked up to 100mg of Minocycline twice a day, which is double the dose I was on in the summer of 2015… and WHAT a difference!

You see, back then, on just 50mg twice a day, I had experienced such bad brain swelling that I could hardly move and my vision was so blurry from the pressure on my optic nerves that I could barely see. Back then I would just lay in bed with Ace and cryyyyyy. After just a few weeks of constantly feeling like I needed to make a run for the hospital, my doc took me off of this drug and I switched to doxycycline earlier than I’d planned. At the time, I was convinced I experiencing normal human side effects and that I’d never be able to take those drugs. But alas, my doc was right… it seems this was just a really bad herx.

You see, this time around, a year and a half of treatment later, I’m back on minocycline with a little brain swelling (I can feel it in my ears and bridge of my nose), but no impact to vision, no headache, totally normal mobility, etc. I am just a little more tired and slow is all. Looking at me, no one would even know anything is going on.

It’s never been clearer to me: LYME TREATMENT WORKS. I clearly have FAR less bacteria dying off this go around. I am SO much closer to remission!

On my Facebook post this morning, my friend Leigh Ann reported a similar experience she’s having and we each started waxing poetic about what life is going to be like in remission… what we’re going to do when we reach that hard-fought stage of life. What a fun exercise in daydreaming.

A few of the things on my list…

  1. Reduce my ~$2,000 a month budget for Lyme treatment to about $500 for supplements and herbs I’ll keep taking to stay well.
  2. Use $500 a month of that $1500 savings to contribute to my ROTH IRA again. (I know this is a dumb thing to dream about, but this IS me HERE…ha… I dream about this stuff.)
  3. Use the other $1,000 a month to TRAVEL!!!!! Destinations I most deeply desire include:
    • Iceland for northern lights
    • Thailand for beaches, monasteries and amazing food
    • Venice – my lifelong dream
    • Paris to visit my tattoo artist and finish my leg piece
    • Hawaii for ALL the snorkeling
  4.  Fall desperately in love with the partner of my dreams. Build a home together. Adopt some little beings to shepherd through life. Humans? Squeeeee!!! I’d love that! If not, maybe a bunch of dogs. Or a parrot?! 
  5. Start to pursue fitness again! I want to ride my bike long distances, I want to lift some smallish weights, I want to jump rope… I don’t really care WHAT I’m doing, I just know I want to sweat more days than I don’t.
  6. Drink coffee with abandon… even if it’s still decaf.
  7. Eat FRUIT. ALL THE FRUIT I WANT.
  8. Live a small, low stress life with presence, mindfulness and gratitude. After being through what I’ve been through, simple, consistent and full of comfortable love sounds DREAMY to me.

Ahhhhhhhhhh…… it feels good just imagining it!! I’ve got a little work to do yet. Tomorrow I start rifampin at 150mg twice a day. 3 days after that, I bump minocycline up to 150mg twice a day. Then I’ll cruise there the rest of the month. Fingers crossed the rest goes as smoothly as transition so far has.

Cheers to everyone out there fighting. We got this!

-kar