lyme update, february 2014

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Oh guys. February marks six years Brad and I have been together (I love that word, together), and six years since Brad’s chronic pain started. (I hate that word, chronic.)

It’s been a bit since I’ve updated you on his treatment and his symptoms. I never know how interesting this is to anyone else. Do you get bored of hearing about pain and pills and diets? I didn’t set out for this blog to be a chronicle of his treatment, but our life is so often built around these realities that it’s hard to ignore.

Anyway, here’s what we’ve been up to: After two months of twice-daily IV treatment, Brad’s doctor wasn’t satisfied with his progress. (Have I told you about Brad’s doctor? He’s Swedish, so I love him, just like I love every Scandinavian Olympian. We’re basically relatives.) While on the IV, Brad inched forward–his sleep got a little better, he could walk without a cane again, and his appetite improved. These aren’t huge steps, but they felt good. His major symptoms–the knee swelling, the joint pain, the myriad other aches and immobilities–didn’t budge. So we tried two weeks of doxycyline, an oral antibiotic, in the IV’s place.

Mistake.

The oral upset Brad’s stomach daily so he lost a lot of the appetite he had gained previously. His joints got even more painful and immobile. He’s had a headache almost the entire time. It’s been poopy, to be honest. All our questions about this path came back, too. Are antibiotics really the answer? Will this even work? Will anything ever work? Will he be this way always? Will our life always look like this? If we didn’t have to devote most of a kitchen cupboard to pills and supplements would our kitchen look cleaner? (Probably not.)

The Swedish Doctor took Brad off the doxy as soon as we called in and said it wasn’t working for us. Today we’re starting another round of IV with a different antibiotic, hoping we’ll quickly make up the little bit of ground we lost and then some.

My knee-jerk reaction is to be outrageously optimistic about each new thing as we start it, so I’m pretty hopeful this will get us back on track. And I’m looking forward to the early mornings snuggled up on the couch again. Still, if you want to leave a comment telling me Brad will get better soon and for sure, it would make me so happy. We can all will it into happening together! (There’s that word I like so much again.)

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10 Comments

  1. Kristin

    Thinking of you both & hoping that this round of IV treatment shows positive results!

  2. Kathryn

    I remember that whole one step forward, two steps back moment when my doc started playing around with my medication and I know how draining it can be. It sounds like you guys have found a great doctor though and I’m sure these new antibiotics will make a difference. Here’s to progress!

  3. Madison

    It WILL get better, I just have to believe it! I look forward to these updates because I’m praying and hoping for good news every time. I will be praying for you, your doctors and most of all, Brad. Sending lots of love from Minnesota!

  4. Lan | morestomach

    it will get better, i have faith!

  5. shanna mallon

    I love your updates. I love the way you love Brad. I love you and Brad. I love that your knee-jerk reaction, six years in, is to be wildly optimistic. Oh, may God give me that kind of beautiful hope!! He is the source of hope so I cannot believe it is anything but good for us to hope in Him with this treatment specifically and to believe it will help. Tim and I were talking last night about how hope is unseen. It is so hard to trust what is unseen! (Well, for me it is hard to trust what is unseen.) It’s especially hard when other people come around you and are like, What? I don’t see anything! What are you doing? But then we got talking about Noah and about how he was building this giant boat when it had never rained, believing what God had told him about how it would, and how everybody around them was like, What? There’s no rain! You’re crazy! But God was right, He is always right, He is always good, and not one drop of walking into what is unseen is wasted.

    You guys bless me constantly.

  6. joannalinberg

    Wow, thank you all! Just hearing other voices say it will get better and don’t give up buoys me. Some good news: After the first infusion last night, Brad slept better than he has the last few weeks. Woohoo!

  7. Laura

    It will get better, it will get better, it will get better, it will get better.

  8. Mom

    My continued prayer: That you two will see God’s goodness in the land of the living. (I’ve already got the card saved for you for when it happens.) Love you so much!

  9. Ryan

    For your lyme condition, have you tried using cbd oil. There is lots of research and more on the way about the positive effects that marijuana strains, especially marijuana high in cbd and lower in thc has on lyme disease. May be worth checking out. You can get it in tincture or capsules and anything herbal is always better than pharmaceuticals.

  10. joannalinberg

    @Ryan Hi! Thanks for reading. Yes, my husband has used a version of cbd oil for several months with no positive response. But it’s still in our stash and we may pull it out again when some other issues clear the way for it to be more effective.

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