Since Smarr felt fine physically, his doctors were not concerned about the results of tests he'd undergone on his own, telling him to come back when he had symptoms.
Those symptoms started within a few weeks: "I experienced a sudden, severe pain in my left abdomen, perhaps the worse persistent pain I have ever known," Smarr wrote in an article in Strategic News. Doctors diagnosed acute diverticulitis and prescribed antibiotics.
Smarr was not satisfied. Additional blood tests revealed his C-reactive protein levels were still above the normal range; given his strict diet and exercise regimen, this was mysterious. Being a scientist, he decided to seek out different data: from a stool sample.
Lactoferrin is an antibacterial chemical in the white blood cells that emits something equivalent to tear gas when in attacking mode.
Smarr's lab results showed that his levels of lactoferrin were 124 times the upper limit. He read in medical studies that this chemical has been shown to differentiate between irritable bowel syndrome and inflammatory bowel disease, which includes Crohn's disease.
Based on the results of Smarr's previous colonoscopy, his doctor said he couldn't possibly have Crohn's disease.
"The doctor said, 'Why are you doing this? You should not be doing this. If you need tests I'll tell you,'" Smarr remembered.
Instead, Smarr found a different doctor: Dr. William Sandborn, a specialist in gastrointestinal disorders. Sandborn recalls receiving an e-mail from Smarr saying "he'd had persistently elevated biomarkers in blood and stool that were unexplained."
Sandborn took Smarr on as a patient and ordered an MRI and another colonoscopy. Putting all the data together, Sandborn determined Smarr was likely to have early Crohn's disease.
They decided not to treat until Smarr became symptomatic; when he did start having problems, doctor and patient were able to come up with a customized treatment, Sandborn said.
Smarr didn't stop there. He took data from the MRI and used software to create a three-dimensional simulation so that, video-game style, he can zoom in and out of the colon and look at it in detail.
It's unclear whether Sandborn would have made this diagnosis had Smarr never undergone all those independent tests and drawn up corresponding charts, Sandborn said. But Sandborn considers Smarr a scientist conducting an experiment on himself, and the pilot study is ongoing.
"All innovation has to start somewhere," Sandborn said. "This guy is an innovator."
This all goes beyond what most people would even think to do, but Smarr said his point is to "be pointing the way to what people can do over the next five and 10 years as these things come down."
His experiment isn't over. Smarr had his microbiome sequenced at the J. Craig Venter Institute -- that's all of the microbes that live inside him -- to see what insights can be gleaned from the addition of that data to the library of himself.
When is it too much information?
Smarr is on the edge of a noticeable movement of people becoming more interested in their health, Sandborn said.
On a health policy level, what Smarr is doing is not ready for prime time, he said. It's not sufficiently tested to recommend that everyone seek their own biomarker analyses without having a doctor deem it medically necessary, and the cost-benefit ratio isn't known.
Pediatrician Dr. Jennifer Shu said she agrees with that. She's all for using phones and related devices to track health -- she uses FitBit and the MapMyRun app herself. She thinks it's a great idea to share this information with doctors, and encourages her young patients to increase their steps by 10% each week until they hit a certain goal.
Ordering your own medical tests online, beyond what doctors would otherwise recommend, opens up a lot of potential problems, Shu said: over-testing, over-diagnosis, over-utilization of resources and false positives, meaning the results may suggest you have a disease that you don't.
In Shu's opinion, extreme tracking and testing is not a good idea, "but it can be difficult for people to know where to draw the line," she said in an e-mail.
Still, all science begins with a novel idea that is tested on a small scale, which is what Smarr is doing, Sandborn said. Also, to some extent, Smarr is making discoveries.
His efforts have led to the diagnosis of a chronic, incurable disease in his body, but Smarr is still optimistic.
"I feel much more like I'm in control because I'm measuring it, I'm monitoring it, I'm understanding my bacteria -- how it's been screwed up by antibiotics and other things," he said. "I'm quite hopeful that over the next five, 10, 20 years, we're going to see cures for a lot of things that we currently think of as incurable."