My pain diagnostic specialist is elegantly opinionated. Fortunately, he acts out the distinction between being opinionated and being rude about it.
We talked over a few things today. He’s still researching my past exposures to uranium, which he has a hard time believing wouldn’t have lasting effects.
He spent a lot of time combing through the idea that evidence-based medicine (in the sense that doctors use the term, not the sense that insurers do, where it means “how can we treat this as cheaply and barbarically as possible”) is really the best and least scary thing out there. Because, data.
I mentioned Dr. Scott Reuben at this point, and he owned that the scientist-practitioner does have to practice with integrity for the science to be meaningful.
He went on to say that the miracle cases that wind up in the literature leave physicians panting to find the next patient who shows up looking just like that case, so they can try the miracle. Doesn’t happen much, and so, there winds up being a paucity of data on rare cases (like mine) that meets the criteria of medical science as he sees it should be.
In the end, as always happens in conversation with a physician who has intellectual integrity, we found ourselves in the cleft stick of modern science:
While statistical probabilities indicate the best chances of success for groups overall, it has two glaring weaknesses, even in ideal circumstances: statistics depend on copious data, which aren’t always obtainable; and statistics mean nothing in the case of the individual.
Thousands of individuals are studied in order to come up with meaningful statistics. Of those individuals studied, how many respond to the treatment at the level of the group’s statistical probability? How many patients in real life will respond at that level? Pfft. All the statistics do is tell you how much of a crap-shoot a given treatment really is; it doesn’t tell you how well or badly it will do for you.
Last Friday, I saw my allergist/naturopathic MD at Northampton Integrative Wellness. He’s exploring mold toxicity, which sure hits all the hot issues I deal with. It doesn’t meet Dr. Saberski’s mental criteria, as I suspected, but that’s okay — I don’t need Dr. Saberski to follow up on it. I need someone like the docs at Integrative Wellness, who have the relevant background and tools, to follow up on it.
Because of my own experiences, I don’t necessarily assume that a well-educated, well-respected, well-published physician necessarily has a lot of intellectual integrity. However, I’ve come to the conclusion, through our conversations and his decisions along the way, that Dr. Saberski’s entire being (at work) is oriented on intellectual integrity.
We may not view things the same way, and he may not be thrilled at everything I do, but the fact is, he shouldn’t have to be. He’s delighted with my good results when I get them, and if this mold toxicity thing pans out and the treatment goes well, he’ll be truly elated for me — and will keep my chart on file, just in case I come back later.
I find it HUGELY relaxing to have such a resolute scientific conservative with such ferociously diligent, relentlessly inquisitive intelligence, which is completely balanced on intellectual integrity, on my case.
All I have to do in relation to the standard science is let him do his job! I do not have to educate this one — quite the reverse! I savor our conversations and make extensive notes, because he always has something to teach me. (Today’s exciting topics: what makes me NOT look like CRPS; the Flexner Report in history; how anesthesiologists, who have the diagnostic training of a spaniel, wound up running pain clinics — another stupid consequence of US insurance companies; and how the nociceptors and immune signaling in the skin are all entangled into being one thing. Woot! Fun stuff 🙂 )
That, frankly, has been unheard of for most of my time with this illness, whatever it turns out to be. I’m well and truly rid of the fearful weight of using my rare full-brain times to try to stay one step ahead of the risk to my survival and management that every doctor visit can be.
I can use my full- and even three-quarters brain time to study up on the stuff he can’t be interested in. For one thing, the vocabulary and writing style is usually less klunky and demanding. For another, that is supposed to be my job.
Patients should figure out what they can do for themselves without making things worse, so I’m happy to do that.
Now, I’m going to find out more about mold toxicity, methods and treatments, plus what data do exist on what to expect from those treatments and what they do in the body. According to my current info, the main researchers are Shoemaker on one hand, and Nathan and Brewer on the other. My allergy/naturo doc is leaving, so I’ll have to start with another one at the same practice. This means I’d better prepare, so I can move the conversation forward a little faster than usual. That means being able to speak her language in regard to what we’re looking into.
I find it’s best to impress doctors right off and for the first several visits, and then, if I’m having a bad day another time, they have a meaningful bar to measure against, and they don’t lose respect for me or dump me into that “just another whacky pain patient” mental garbage-can. I work hard to make visits as useful as possible, as regular readers know.
I’m also getting ready to do another massage intensive. Looking forward to that! It’s pretty uncomfortable for a couple weeks (arnica pills 6c and 30c, and Advil Liqui-Gels, are essential pre- and post-massage medication), but the payoff could be so spectacular. I’m tired of the downward slide and intend to crank up the functional level one way or another.
Winter bit me pretty hard. It’s time to start biting back.