Wednesday, September 28, 2011

How can I help without sounding like a crackpot?

I’ve done something that’s not exactly in line with the diabetes establishment. I know it’s relevant right now as this epidemic gets fully ramped up. There’s no way I can be such a complete genetic outlier that my experience doesn’t apply to other diabetics. I think as a LADA, standing at the crossroads of Type 1 and Type 2, my perspective is unique. They’re still guessing about LADA. They know it’s autoimmune, and they know there’s a multi-year year window until insulin is required. That window makes all the difference. In 2009, when I told my extremely evidence-based-medicine-driven physician (DO) that I would do anything to avoid the FSIS (F***ing Shot in the Stomach), he said, “Well, any endocrinologist would put you on insulin now, without a second thought. But there’s no evidence that your outcomes would be any better than waiting until after meds and lifestyle changes have become ineffective.” That was 2 and a half years ago (HbA1c=11.1). The next year and a half progressed exactly as he predicted. The metformin, glipizide and reasonable lifestyle changes initially dropped the HbA1c to 6.4, followed by a slow rise to 8.8 at the end of 2010. We doubled the metformin. The numbers came down, but not as far, and for not as long. By February of 2011, my fasting BS was headed up again. But I didn’t wait for that. As soon as we doubled the metformin, I took charge (I’m sure my wife would call it obsessed). I utterly rejected the FSIS as an acceptable option. If western medicine shrugged and saw only one path... I’d look east.  And I’d look at lower grades of evidence. Hell, I’ve taken at least one supplement based on a mouse study. As long as my DO and nutritionist could see no harm.

So... it’s nearly October, 2011. My HbA1c has dropped to 5.5, and I quit the glipizide more than a month ago per the DO’s OK after my once a day morning fasting BS stabilized below 126 (the magic line on my graph). Fantastic story, huh? Even I, a fairly crusty skeptic, have allowed myself to get a little excited. Have I banished the FSIS forever? It’s pretty undeniable my pancreas is functioning at a substantial level. Have I reversed an irreversible autoimmune disease? It’ll take years to know for sure, but LADA is supposed to be a worsening progression, NOT dropping numbers with fewer meds. Exactly which, or what combination, of strict diet, excersise, supplements, acupuncture, meditation, stress reduction (only achievable via extensive mental re-build) has been/is the solution? We have no idea. None of my team (DO, acupuncturist/nutritionist) can write this up and submit it anywhere. Too many variables. I sure as hell wasn't going to double-blind test myself for each component (or combination) of this “treatment”. I wouldn’t have lived that long, even without diabetes. So you’re not going to hear about this from your doc, or read about it in JAMA. I’m not a usable data point.

I could just sail off toward my now happier and healthier, insulin-free horizon and leave the rest to fend for themselves. But it would seem such a waste not to share the the fruits of my self-experiment. Every body’s different, and would have to customize the recipe, but none of the ingredients are new, or costly. So I ask again, both longtime diabetes warriors and newly diagnosed alike, how can I lend my body of evidence to help without sounding like a snake oil salesman?

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