Eureka

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!

Is butter a carb?

Regina George couldn’t fit into anything except sweats before realizing that her diet wasn’t working. The Swedish “nutrition” bars she was eating made her gain weight rather than lose it. Initially she questioned their efficacy but her commitment to the calorie-burning-crusade overrode her better judgment.

In February, I started taking a prescription called Mepacrine. It’s typically used to treat malaria and lupus but my doctor has seen it work for other autoimmune patients so he urged me to give it a try. I didn’t take this decision lightly because the side effects are notoriously rough but the potential for improvement outweighed any hesitation. Oddly enough, one week on it and I hadn’t felt a thing. (That was the first flag I missed: if a new supplement, tincture, or prescription works for me, I feel it right away.) After ten days on it, I woke up unable to stand or bear any weight on my legs for the first time in my life. It was terrifying.

I got a blood test and it was nearly perfect. My creatine kinase enzyme (CK) was in the normal range for the first time in six years and my liver wasn’t bothered by the harsh Rx at all. Numerically I was responding well so my doctors and I decided to lower the dose and stick with it for another month to see if my symptoms would subside. My blood work kept improving but my paralysis didn’t and the recommendation was to stay on it.

If I could scream as loudly as Regina did when she discovered the nefarious plot to destroy her body via Kalteen bars, I would have. Something in my protocol was broken and what little functionality I worked so hard to hang on to through this ordeal was slipping away. That’s when I decided to stop taking the Mepacrine. Eight days later I took my first steps since February.

My first blood test since pausing the prescription is two weeks away. I’m prepared for both possible outcomes: (1) my CK enzyme bounces back up above the normal range or (2) it stays normal, and is possibly even better than last time. If it’s #2, it will be my third consecutive month below 173 and I will have technically beat polymyositis… I’ll be in remission.

Either way I’ve still got some work left to do. If my immune system isn’t attacking my muscles anymore, what is? My doctors, acupuncturist, and the AmpCoil voice analysis are all in general agreement that there’s a virus at the crux of my paralysis. I trust this team. I trust this process. But I also trust my curiosity and will be enlisting another pair of eyes to review my case at the Mayo Clinic in Phoenix. Cautious optimism is the name of my May game so keep the good vibes coming. Onward and upward!