It hit me like a ton of bricks on a regular afternoon at home. My fingers ran wild over the keyboard to keep up with the flood of medical questions that now suddenly needed answers. After a few hours I couldn’t find anything to debunk my hypothesis. Am I crazy, or did I just figure out what’s making me sick?
⏮ To recap: we know that this ordeal started with Lyme co-infections ~8 years ago. No bullseye rash, two false negative Western blot tests, and one *very* positive urine test.
⏩ Lyme bacteria triggered a rare autoimmune disease called, polymyositis– essentially it’s the destruction of the trunk muscles. I was relatively stable (walking, working) for ~1.5 years. And then I crashed. Within three weeks I became almost completely immobile. Something provoked a drastic decline in a very short period of time.
⏭ Over the following six years rheumatologists discovered 12 or so variations of polymyositis, so when I became a patient at Mayo they updated my diagnosis to Necrotizing Autoimmune Myopathy (NAM). It’s even rarer than polymyositis and the only known cause is the prolonged use of statins, which, I’ve never taken.
▶️ Two months ago I started thinking more about NAM. Are there any similarities between statins and any of the conventional medications I tried very early on?
Yes, yes there are. And then it All. Started. To. Click. One of my doctors at the Sophia Health Institute validated the merits of my hypothesis and I’m undergoing treatment right now (it’s treatable!). This will undoubtedly take a lot of time to overcome but we’re definitely on to something. Just four days on a new prescription and I experienced a duller version of every one of my symptoms in the same day, for the first time in 8 years. Prior to this they’d appear sporadically, one or two at a time, and seemingly isolated from one another (making it impossible to identify a pattern). Having my body respond to one new variable with every signal it has is a good sign.
I’m not ready to share the specifics yet; it’s too early in the experiment. But you can count on a full report when I have more results. If it’s good, we party! If it’s a goose egg, I’ll have the next trial underway before you can cancel your membership to the Strugglebus Science Fair. Regardless, thank you for sticking around… I couldn’t do this without the ocean of grace that you’ve afforded me in my healing journey. More to come!