As a retired physician, I often get informally consulted by people about their medical problems. I generally tell them that I am not a real doc, just a former radiologist (one of the first sub-specialties that will be replaced by AI and appropriately so) who spent a career looking primarily at images, and less so, patients. But in the current environment of medicine where physicians spend most of their time sitting in front of a computer workstation, tablet and cell phone, in some cases never making eye contact with the patient, it may be that I had more contact with patients in my career than any of them will ever have.
Recently I was contacted by an acquaintance regarding persistent nausea, vomiting and abdominal pain. He was an otherwise healthy young male in his early thirties. He went to a reputable ER, had all the tests done after the appropriate keyboard click and everything came back negative. He was told he drank too much beer. When we talked further, it turned out that I drink more beer than he does. No comments please. He remained unable to keep down any food and had random episodic severe abdominal pain in association with nausea and vomiting and ended up in another reputable ER several days later. Same process, slightly different conclusion. He had inflammation of the stomach, gastritis, and they told him to take antacids. And they referred him to a gastroenterologist.
He went to see the gastroenterologist who of course never saw him. A nurse practitioner saw him for 5 minutes, reviewed the tests, asked no questions, performed no examination, and then scheduled him for a gastroscopy by the gastroenterologist who didn't have the time to see him, because ostensibly he was too busy performing procedures that generated considerable income. For the uninitiated, gastroscopy is simply when they put a scope down your throat and look into your stomach to see what's going on. In his case, probably a perfectly appropriate thing to do.
After the gastroscopy, the gastroenterologist stated that the study was perfectly normal and once again blamed the patient. It was no longer beer intake that was the problem. Now, it was determined that he smoked too much marijuana.
It is a common event for physicians to ‘blame the patient', when they cannot determine a cause and/or treatment for a patient's illness.
He remained unable to keep down any food and began to rapidly lose weight. So he called me again and asked me to review his tests. And I must say that all the appropriate tests were performed and they were all negative as far as I could tell. Time to have a bit of a conversation with him. It took about 10 minutes on the phone and certain things popped up pretty quickly. Briefly he said he couldn't keep any food down and when asked, said at this point the only thing he was trying to keep down was beef broth, for over 2 weeks. And he couldn't do that. Hmmm. His abdominal pain was entirely random and seemed disconnected with any events including eating, sleeping, and time of day or night. And finally I knew where he lived, which is a wooded area and that he had several dogs. I asked him if he had had any tick bites and he laughed and said that he got tick bites all the time. As I said, I don't even consider myself a real doc anymore, but I do read a significant amount of the medical literature as a medical editor and for fun, and his diagnosis became obvious. It is not a well-known disease (yet) but is rapidly emerging, and certainly a gastroenterologist should have made the diagnosis. Had he bothered to actually talk to the patient.
He has what is called, alpha gal syndrome (click here), an allergy to mammalian meat and meat by-products seemingly precipitated by tick bites, but it turns out there will be other factors involved unrelated to tick bites that have yet to be worked out. We are in the early learning stages of understanding it. Approximately 20 to 30% of patients only have these gastrointestinal symptoms (recent studies suggest this may turn out to be a much higher percentage), as opposed to true full-blown allergic reactions. One strange aspect of these abdominal symptoms is that they are seemingly random and cannot be connected with eating, drinking, sleeping, exercise, or seemingly anything, which should alert a caregiver. This is because the symptoms can come on anywhere from 2 to 8 hours after eating the triggering food, and this time lapse changes episode to episode. So it's hard to link it to anything. It's almost a characteristically uncharacteristic onset of symptoms. I recommend you click that hyperlink because it is estimated that there are likely 500,000 people in the US with this disease, and 20% of Americans in the Southern United States are testing positive for the antibodies of this disease without symptoms yet - nobody really knows what the hell that means. And that summary hyperlink is already out of date with new information rapidly emerging. Even more bizarrely, the antibodies are against a complex sugar, not a protein as is normally seen in virtually all other allergic diseases. Initially thought to be associated with a specific tick in the Southeast United States (the lone star tick), it is now being reported in nations throughout the world. Currently in 17 countries on all six continents. You have to look for it specifically, so who knows where it is. And most bizarre of all, there is a case report of a patient with an acute neuro-psychiatric disorder, diagnosed with alpha-gal, who completely recovered after diagnosis and being placed on the appropriate diet. That's right, an acute psychiatric disorder causally linked to alpha gal and cured by changing diet! After all drug therapies failed. This may be a one-off. But I don't think so since some food allergies have clearly been documented to cause neurologic and psychiatric disorders. Imagine if this disease is associated with a significant incidence of neuro-psychiatric disease. There is no place in the world where they are going to screen neuro-psychiatric patients at this point in time for alpha gal syndrome. Yet alpha gal syndrome has some immunologic similarities with yet another unusual disease called Guillain-Barre syndrome, which is a rare neurologic paralytic disorder. This is getting weirder and weirder. Stay tuned - it's already been picked up by the news media, in a somewhat poorly informed manner. There is something seriously going on in the world of allergy/ autoimmune disease that no one understands at all.
Anyway, I told my guy he needed to see a real practicing physician, specifically an allergist for appropriate testing to confirm the diagnosis. But of course he couldn't get in to see one for 4 months in our US medical system that is supposedly more efficient than the Canadian system, where people have to wait as long as 4 months to see an allergist. So then I simply told him that he should stop eating meat, dairy and a few other meat derived products for a few days to see if he got better. Like virtually all food allergies, there is no cure or treatment other than avoidance. He did so and in short order completely recovered. After approximately 2 months of illness. Hopefully he will see the allergist someday to completely secure the diagnosis with the appropriate blood test, which unfortunately is not 100% accurate.
His diagnosis is unusual in that typical medical testing will not unveil it. But the point is that complete reliance on current technology is not always in the patient's best interest. Algorithmic thinking will never reveal some answers. Or if it does, the answer is so remote that it will take years to reach it. Sadly, the average person with this condition suffers through approximately 2 to 3 years of symptoms prior to the diagnosis finally being made, according to the medical literature. According to the CDC, 42% of healthcare providers are unaware of the disease at all, and another 35% said they were not confident in being able to diagnose or treat the disease. Think about that. Widespread healthcare ignorance about a disease estimated to be affecting 500,000 Americans. In terms of the allergic manifestation of the disease, people have died in anaphylactic shock. For the patients with gastrointestinal symptoms they usually get provisional diagnoses of irritable bowel syndrome, psychosomatic illness, anxiety and stress related illness, and all sorts of other gibberish because the usual tests don’t come back positive and no one is there to think. Or actually talk to the patient. About $30,000 to $40,000 of medical costs for this guy without helping him or his suffering. He gets the big kiss off from two ER’s and a gastroenterologist that blame him for his illness. And wash their hands of him with no further referrals or workup. For a disease getting mainstream news media coverage. Apparently American physicians don't read the news media. Or medical journals. This is American medicine today.
“Chance favors the prepared mind” Louis P. The unprepared mind is up the creek w no paddle.
If not for your relentless curiosity and genuine interest in this patient, he wouldn’t have gotten the right diagnosis or treatment. It goes to remind us all the importance of asking questions and listening! Patients always tell us what’s wrong. We have to take the time to ask questions and listen. AI won’t do either. It not just about going down a rabbit hole. It’s about going down the right rabbit hole.