My brother’s labs ran for nine and a half years.

2012

The year the floor gave way

Inside about two years my mother died, my brother died, my wife was diagnosed with a brain tumor that four years of specialist appointments had missed, and the medical practice we had put every dollar of our savings into went bankrupt.

We had bought the building in Old Lyme, Connecticut. Replaced the windows, the heating, the cooling, rebuilt the downstairs for a tenant, deferred the student loans to do it. The 2008 collapse took four years to reach us and then took all of it. Patients stopped paying their co-pays. The tenant could not make rent. We sold the building for well under half what we had paid and handed the new owner our architectural drawings on the way out the door.

Judi had been telling a retinal specialist about blurred vision in her right eye since 2009. Three years running, he suggested it was in her mind. On the third year he told her she was probably blocking something out, and said he would send her to a psychiatrist, but would refer her to a neuro-ophthalmologist first to be sure. That neuro-ophthalmologist, at Saint Raphael’s in New Haven, took one look and ordered an MRI for the next morning. She rang that evening. A meningioma the size of a large plum, pressing on the right optic nerve and starting to travel toward the other eye. Her elevated IGF-1, which I did not know at the time to read the way I read it now, was the tumor pushing on the gland. The surgery took twelve hours. She never got the vision back.

Judi has written her own account of those four years, and of what happened a decade later when her cholesterol came back at 411. It is here, in her words, and it makes the argument of this whole page better than I do.

Both of us, at once

None of it waited its turn

Reading it back in order makes it sound tidier than it was. It did not arrive in sequence. Judi was diagnosed in November of 2012 and operated on at the end of February. My gut had already stopped working. For most of that stretch we were both in the house, both wrecked, and neither of us was in any position to look after the other.

She could not lie down for eight weeks after the surgery, because the pressure was unbearable, so she slept sitting up. I could not get up the stairs, so I slept on the pull-out sofa in the front room. Two people in a house with a perfectly good bed in it, neither of us in it.

I did the cooking, because she could not. That was the one useful thing I could still do, and I did it badly. She was a woman recovering from twelve hours of brain surgery and I was walking to the shop to buy her croissants and muffins and bagels, food neither of us had eaten in fifteen years, because the gastroenterologists had me on white rice and white bread for the colitis and it had become the food in the house. She ate what I brought her. Both of us knew better. Neither of us had anything left to argue with.

That is the part that does not fit neatly into a story about method. There was no clarity in it. There was no plan. There were two people taking turns being the one who could still stand up, eating badly, waiting for the next appointment, and getting steadily worse.

What I did about it

Butyrate

Every organ has a preferred fuel. The liver runs on branched-chain amino acids. The small intestine runs on glutamine. The colon runs on butyrate. I remembered that much from medical school. If I could get butyrate into a colon that was tearing itself apart, the inflammation had a reason to come down.

I could not get it. Butyrate enemas were not available to me, and most of the physicians I asked had never heard of the idea. So I went after the other way to change what a colon is fed, which is to change the bacteria that make the butyrate in the first place.

That took me to fecal microbiota transplant, which in 2013 the United States would barely discuss. I flew to two international gastroenterology conferences, Chicago and then Miami, to find the people doing it. The Americans who presented described disasters. The Australians, the Belgians, the French and the Canadians described thousands of cases and better outcomes than anything on offer to me at home. Thomas Borody in Sydney had done more of them than anyone alive and was willing to sit down and talk it through with a stranger.

We did three months of it at home, five days a week. It worked.

The part that became the work

Why I read labs the way I do

Nothing in those four years was solved by a single number.

Judi’s IGF-1 sat elevated for years and got read as a value inside a range. My inflammation was treated as a diagnosis code rather than as a physiology with a cause somebody could have asked about. My brother’s spreadsheet was columns of numbers that individually looked unremarkable, month after month, for nine and a half years.

The signal is in what moves together. That is the entire thesis, and it is not complicated. Twelve years and nearly 9,000 scatter plots later, across more than a hundred clients, I have found no reason to change my mind about it.