The real moral behind this story is that a rare disease can stump a succession of doctors.
Tick and rodent borne infections can be very serious and sometimes fatal. Plague is endemic in rodents in arid climates and can kill before a correct diagnosis is made.
Rural people and snake keepers need to be aware of this.
So far as I am aware, bites from nonvenomous snakes carry little disease risk.
4
A thrilling story!
4
So did she have a sub-type of coxsackie causing the palm and sole rash in addition to the rat-bite bacterium, streptobacillus monolilformis ?? Or just anti-bodies to the coxsackie virus from a prior resolved infection?
@ee mann
She had rat bite fever. The antibodies to the Coxsackie virus were left over from a prior infection.
6
Given the proliferation of tick borne diseases, the patient should be counseled not to handle rodents “in the wild” - on the road, from her car, where no immediate hand washing is possible.
2
This is an interesting case. In California a year or two ago there was a sad case of a young boy who died from a rat bite (maybe a nip). His family had bought a rat for him from Petco or one of those kinds of pet shops. I read about it somewhere, but I don't remember the details other than that he died from a domestic rat bite.
I think this column is important. For all those complainers who think these cases lead to hypochondria: get real. You'd feel differently if you searched long and hard for an answer to a serious, debilitating illness, and no one was willing (or had the time) to listen to your concerns. It can happen to anyone.
It's about time someone investigated the rare(er) medical conundrums. These are real patients, not "statistics." Shame on anyone who would disparage a patient (it's usually females and/or children who are the victims of misdiagnosis, but adult males are not immune, either)
There are many who need answers to conditions which are impacting their lives (and could be fatal if misdiagnosed). Listening to patients is rare (for various reasons) in itself. Time to change that dynamic in any way possible. A correct diagnosis is valuable--and may save a life.
Sooner or later, most of us will find ourselves in serious need of medical answers--hopefully, diagnostic techniques will continue to improve.
16
Everyone, even physicians, know only what they know. With the exp!anation the case seems so obvious; we are tempted to dismiss the "hazmat suit" doctors, but they did as they had been trained. They looked for a borse, not a zebra. This case exemplifies why patients should always get a second, third, and if neec be, fourth opinion when a diagnosis does not cure. Bravo to the patient and her Mom for being so proactive.
14
Dr. Advani may have lamented that missed question on the boards--at the time. However, her having missed that one particular question was the only reason this young woman's condition was finally accurately diagnosed. What serendipity that THIS doctor saw THIS patient!
39
The people who succeed are those who are as educated as they can be about the things that effect them. Period. If you are sick, disregard anyone who tells you not to cruise the internet. My sister has an extremely rare illness that was missed for years. By Mayo. Finally, someone figured it out- they had to engage in TOTALLY different treatment.
19
These cases would even be more intriguing if hospital costs and doctors' bills were included..
19
I am not a fan of AI but this is a situation in which some day AI will be a huge advantage for diagnosing rare diseases.
6
@Scott Werden No it will not. It takes ages with extremely low less success rate to train our best computer (the human doctor) properly and to transfer learned 'experience' from one human doctor to other (aka medical training). Such process has much less or abysmal success rate when we try to train silicon computer. Text parsing, image analysis with previous known stored 'data', prediction all failed in complex medical diagnosis as such diagnosis deals with more subtle difference that till today only some human subject can understand after extensive decades long training. Unfortunately promise of Ai and machine learning are mostly hyped and shown to fail in case of complex subtle diagnosis. It always shown to work or highlighted or advertised (using Silicon valley propaganda machine) in cases where just bare-eye, common logic simple investigation we can immediately distinguish the cause. But we are not looking for such simple toy model type judgement and thereby they don't have any practical use in medical diagnostic.
4
@Raya,
Diagnosing rare diseases has too much of an element of luck, as this article illustrates. You have to be lucky enough to find a doc who has heard of the disease, for one thing. AI removes luck from the process since it will be "trained" with all the medical articles ever published, all the text books, and has access to the databases of orgs like the CDC. Human docs cannot keep up with that much input, but computers can. I predict that in 10 years AI will be widely used in aiding diagnoses. But the AMA won't be happy and will no doubt resist it.
5
Proving once again that the diagnosis will emerge from a carefully taken history. Something that is often forgotten in modern medicine. Strong work, Dr. Advani!
56
I can't help but wonder if the team of hazmat protection-wearing doctors dismissed the correctly diagnosing doctor b/c she was female, young, or the combo. Yes, the patient was also female, so I'm not sure what to make of it, but it sounds like the patient reiterated the doctor's argument, though possibly more vigorously and with secondary evidence - from the NIH. Makes me, a woman, weary of what biases I encounter among doctors.
23
@Reader Or, because she had a very rare disease that was diagnosed only because of a missed question on an exam. We also don't know the gender of the 'hazmat protection-wearing doctors'. In any case, not all conditions present the same way with each patient. It was not unreasonable, or necessarily biased - unlike the commentor?
4
Just imagine if she had been Black. Undoubtedly, her complaints about pain would have dismissed and she would have been denied pain medication and probably been kicked out after being termed an addict. This has happened to untold sickle cell patients in crisis. It happened to a good friend of mine who nearly died.
7
@Roger
The gender of the hazmat-wearing docs may be irrelevant. Plenty of women give more credence to men than women.
1
It's good to publicize stories like this to unsettle complacency. When a patient is lucky and educated enough to be their own best advocate good outcomes are more likely but not everyone is so fortunate and so the thoughtful doctor is a blessing.
This turned out well for the patient finally and is a feather in the doctor's cap - may be she heal many more in her work.
23
A key point that has been missed by many of the commenters is that the patient had to convince the medical team using the results from a web search.
So the key requirements are a listening doctor, with a careful memory *and* a patient who follows up with their own research (using the Internet).
55
I wonder what Dr. Advani's training was that allowed her to make the connection, when others could not. If she was trained in some other country, it might be an argument for adding diversity to our medical profession.
19
It’s right there in the story - she was the infectious disease consultant who was asked to see the patient. That’s the special training.
9
@Ron . perhaps this was added after you commented- she apparently missed a question on her infectious disease boards and studied up on the rat bite issues- that made her very aware of what that looks like.
7
I think this is an important lesson in the value of occasional failure. It fights complacency, encourages problem solving, and aids in retention. Sometimes you have to fail in order to be better.
12
I sometimes tease ID docs for their extensive histories (ate lettuce 2 days ago, visited a cave in Ohio 6 years ago, exposure to parakeets) but this is a good reminder why they do it.
Fun case!
55
This is a perfect example of the adage: We learn most acutely from our mistakes and failures."
Had the medical student not missed that test question, the doctor might not have ultimately had the answer.
58
While I suspect that physicians with the knowledge and out-of-the-box diagnostic creativity of “House” are rare as hens teeth, it’s gratifying to read that some do exist in the age of corporate medical care. Nice story. Thanks.
24
I’m sorry, but this isn’t some ‘House’ fantasy scenario.
This is what Infectious Disease specialists are supposed to routinely be able to do. Unfortunately, given the time & financial constraints on many physicians (especially those that don’t do expensive procedures), fewer physician do the extensive diagnostic work they should really be doing.
7
With syphilis spreading rampant in our communities I would think that the writer would at least mention that rashes on hands and feet are a prominent symptom of this infection as well.
28
As Sir William Osler said to do, she listened to the patient.
25
Actually she asked a lot of questions, too. If she just listened, I doubt she’d have ever learned about the rat bite.
6
The obvious diagnosis here is secondary syphilis, but the rash is usually flat, not vesicular. I'd guess that it was included in "other" tests and hopefully negative.
The Lewis and Clark expedition overwintered in Portland, Or. where they were exposed to "venery", their term for syphilis. On the way home, two of the soldiers had to ride horses instead of walking back up the Columbia River because they were so sick with their palmar rashes, fever, hepatitis and the rest.
9
“. . . [Dr. Advani] sat down. “Tell me everything that happened,” she said. She listened as the woman described the pain and fever of the past few weeks. . . The next morning, Advani returned to see the patient. She had [more] questions. . . “
It was fortuitous that this patient’s doctor happened to remember a rare disease. But I would like to propose an alternative explanation re: how and why she, and none of the other clinicians, ordered the right tests and made the correct diagnosis: she had and took the time to listen.
As clinicians are expected to see more patients in less and less time, they become, of necessity, increasing reliant on tests and technology. A thorough, individualized history (impossible in a 10 minute appointment) obtained by a skilled and compassionate listener can frequently reveal a diagnosis and eliminate the need for costly and often unpleasant and invasive tests.
77
@D. Lieberson Clinicians are expected to see more patients in less time, so that their employers, sitting in air conditioned offices, can make more bonuses. Last year, the CEO of a health insurance company made $40 million, and did not have to deliver a baby or suture a wound at 2am. Dr Advani’s salary, I’m sure, was nowhere near that. But congratulations to her for a very fine job.
55
@D. Lieberson--I think in cases such as this one you can't just diagnose by listening to a patient and expect to find the correct answer in 10 minutes(I mean, really, most people spend more time in the waiting room than ten minutes.) Sometimes you can get it right with the usual tests, often not. I don't care how good of a listener you are, the more rare the condition, the more tests you need (not to mention time to sort things out). Misdiagnosis often happens when there's a rush to proclaim a diagnosis just to get onto the next patient--you can thank insurance companies for that.
Hope they ruled out syphilis first thing. Palm/plantar rash is classic in secondary syphilis.
7
Why didn't they give antibiotics from the beginning...Really glad Advani came along...sometimes I just think docs are ????? the whole virus preoccupation often makes them forget about BACTERIA
6
What antibiotic(s) do you usually give,
DOCTOR, for an undiagnosed illness in a patient that is not septic/in septic shock, etc.?
Doctors don’t “forget” about bacteria, but many patients are obsessed with showing up & getting an antibiotic for a diagnosis that doesn’t warrant one (eg a cold).
8
From the CDC website:
People typically become infected with these bacteria after contact with rodents carrying the bacteria. A person can also get infected through consumption of food or water contaminated with the urine and droppings of rodents carrying the bacteria. This is known as Haverhill fever.
If not treated, RBF can be a serious or even fatal disease.
7
“And because the test measures antibodies and not the bug itself, it can’t distinguish between current and past infections.” This statement isn’t correct as “acute” or current infections can be measured with Ig M antibody tests. If it was ordered that would’ve ruled it out.
3
You are certainly correct that the author’s statement about antibody testing is not completely accurate.
However, I’m not sure that IgM testing would have solved the problem in this particular case.
I believe that IgM isn’t necessarily available for every bug.
Additionally, IgM may be negative early on in certain illnesses. Therefore, a negative IgM does not definitely rule out all acute illnesses.
Testing more “directly” for the actual presence of a bacteria, virus, etc. in blood, bodily fluids, organs, etc. via a variety of methods is sometimes another option that may help. Different methods can have their own drawbacks (eg culture for certain very slow-growing organisms can take quite some time).
Sometimes, using more than one method (eg antibody plus culture) can be more informative. It all depends on factors specific to the particular organism one is attempting to detect.
1
I never know how to react to this column, the current column least of all. Should I feel more confident about the medical profession because a doctor reached an exotic, life-saving diagnosis? Or should I feel distressed because the horde of doctors who saw the patient initially didn't come close, and the doctor who did make the diagnosis reached it through a fluke? From the patient's point of view, it seems, adequate medical care, even in this country and in this day and age, is a matter of dumb luck.
53
Nobody should expect primary care, urgent care, ER doctors to diagnose uncommon & unusual diseases.
Try reading a current medical textbook. There are tons of disorders; one can’t possibly diagnose a fraction of them, especially in the 10 minutes most “regular” doctors have if they actually want to stay on schedule.
That’s why we’re lucky enough to have specialists.
I suspect that most thorough ID specialists would have made this diagnosis even without having made a prior notable error on a prior exam. I frankly think it’s a sort of reverse “red herring.”
2
These medical mysteries are one of my favorite articles in the New York Times. Keep them coming
40
The main clue in the diagnosis was the doctor's observation that palms and soles have different skin: rashes there are rare. She focused on the rash as the key diagnostic point.
Imagine how fast this could be solved with good medical AI search engine. Rat bite fever showed up on the third search page on the NIH when "hand rash, high fever, joint pain" was input. Most of the other options were vector borne diseases. The next question would be to eliminate and isolate vectors, and close in on a short list of possibilities.
I know we live in an age of worshiping privatization, but why haven't we started growing a national tool that simplifies finding information that we can have any doctor use?
The doctor had the most important input - recognizing the distinguishing factors - but every doctor should have a tool set beyond experience to help find the answer.
38
@Cathy
How would outcomes or effectiveness be evaluated for an AI tool?
2
A truly innovative exposure found studded in the regular articles of the learned author. Unwittingly ,and altruistically,Dr,Lisa Sanders is doing monumental service to the people in distress for want of the right type of medicare ,while opening up the portals of awareness to the true and rightful diagnosis as the bedrock of curative treatment .Such a fresh approach is the desideratum in the field of most of the contemporary medical practitioners for whom ,knowledge,experience and a performing common sense are a prescriptive sine qua non for success.
14
What this really shows, from my perspective, is a sad but true part of life: there are all sorts of ways to learn something, but the best is from a mistake. I have colleagues who want law schools to teach legal practice, rather than legal theory, which we probably know better than anyone.
They want law school graduates to know how to respond to all the things you learn in law practice. But everything I learned well in law practice was from terribly embarrassing mistakes. the kind that keep you up at night, not just once but all through the weekend. Oy.
For this young doctor a question on a test was worse. Better to make the mistake on a test than on a patient. Nothing like testing! Especially hard tests. Does this mean I'm back to emphasizing theory over practice? Perhaps it does but to me, to a doctor, tests are as important, maybe more, than an ER with helpful colleagues to get you out of a rough case. In any event, its good story, and I was wrong at every step of the way. I can tell you too that this bacteria better watch out if I ever hear of these symptoms. I've now become an expert in one aspect of one bacteria.
26
Perhaps the problem with diagnosing infectious diseases is not really seeing that many in the US. If you look at specialists most of them are familiar with HIV. If you go to any doctor in India, they would have seen a number of such cases and would recognize the same very quickly. Surely there must be a way to connect doctors world wide so they can consult with each other quickly instead of keeping the patient in pain for an unnecessarily longer time. And yes be an informed patient.
39
A friend became very ill a few days after arriving in Puerto Rico, where she was born. She spent several weeks in hospital with only minor improvement. When she was well enough to return to the US, she immediately went to her primary care physician. He immediately and correctly diagnosed Dengue Fever, a tropical sickness. He was Filipino - he had seen it many times before. Diversity in medical professionals is never a bad thing. Odd that it wasn't correctly diagnosed in PR.
13
It will be interesting to see whether such a medical diagnosis procedure will improve in the future by using AI. At the end of the day, it was pure luck for the patient that the infectious disease specialist did not forget - like all the other doctors - her knowledge about the rat fever (a disease which may be indeed rare here, but still a test subject in med school). My hunch feeling is that an advanced computer algorithm will not miss that connection in the future. We will see.
24
The other doctors might never have known, or they might not have reviewed the answers to all their mistakes as long as they passed.
2
Wait, if I understand this correctly, even though the doctor came up with the correct diagnosis as a possible solution, it was *the patient* who had to argue them into making the correct call. A patient who was in excruciating pain, had a high fever and painful rash. Can you imagine having to argue with doctors in such a situation? If I read the article right, she could have died if they had kept on the same incorrect diagnosis. This story is horrifying. And shows yet again how patients have to fight for the correct care. Kiddos to the doc for remembering about rat-bite fever, but it was the patient who saved her own life.
132
Remember if you are not getting satisfaction from the doctor you are seeing go to someone else. Many common illnesses are missed because of tunnel vision. They have an idea what is wrong with you and aren't open to the possibility that they are wrong..We meekly return week after week believing in them, but they don't look further. You have to advocate for yourself and your loved ones.
10
@gmhorn--It might be a tad difficult if you end up in dire straights like this patient(especially if it's a rapid decline in health) and are stuck with the available doctors.
Also, you have to consider insurance limitations and out-of-pocket costs. Unless you're independently wealthy, you could very well end up bankrupt (even with "good" insurance).
Advocating for yourself is one thing, getting the right doctors to listen to you is another.
1
Was the diagnostic test a positive culture for the Rat Bite bacterium, or a serology test? If it was a culture, then the story works. If it was serology, could it have been a false positive given the rarity of Rat Bite Fever combined with the relative ubiquity of enteroviral infections?
5
They had to wait quite a while for the results. wouldn't that be a culture? What do I know. I could only tell you how to patent it.
@Ru
It was from a culture. Streptobacillus moniliformis - the bug that causes Rat bite fever in the US - was identified based on a specific gene. A very good test but done in just a few places.
6
I think it's particularly interesting that Dr. Advani was helped to make the correct diagnosis because of a mistake (i.e., having missed a relevant question on a test). Mistakes can be valuable, and she might have retained the information about ratbite disease all the better for having gotten it wrong as a student.
79
@Warda
In same vein, for any physicians or health care providers reading the article, it would be nice to publish the list of differentials that is referenced in the story. For all of these articles, they are interesting to the general public who read them, but an opportunity for learning for health care providers. Can NYT post the differential that Dr Advani considered for those of us for whom dermatology was a long time ago in our training?
15
Dr. Advani got it right because she took the time to keep asking questions and to listen to the patient’s answers- and also, because her mind wasn’t closed to the diagnoses that had been made already by others. Unfortunately, our medical system doesn’t afford doctors much time with patients- so they don’t usually have the opportunity to keep asking and listening.
45
@Cardiologist "In the same vein..." -that made my day.
2
What I find puzzling in this account is that, although the infectious-disease specialist diagnosed rat-bite fever as the likely cause of the patient's symptoms, it seems that the medical team actually treating the patient did not pay attention to the specialist's advice. Rather it fell to the patient herself to convince her medical team of the correct diagnosis.
"The medical team caring for the patient was skeptical. Rat-bite fever was so rare that most of them had never heard of it...The patient told them she was pretty sure she had rat-bite fever. She told them about her close encounter with the baby rat. She pulled up the C.D.C. web page with all her symptoms. She showed them the pictures of the matching rash. The medical team was persuaded — so much so that they took off their face masks."
This seems like a perfect example of the way so much medical care is disjointed, poorly coordinated, "right hand doesn't know what the left hand is doing."
144
Agree with your comment. (a) thank the heavens for the internet because it seems it was that that convinced the docs it was rat bite fever - so always bring your iPad/phone with you, (b) don't docs discuss a case and develop a plan of action. It is hard to think that they deliberately ignored an infectious disease specialist. The question to ask and have answered is Why.
65
It appears that they ordered the correct test, and were waiting for the result at that point. It’s not wrong to be cautious.
1
@SML All true, but... they were peruaded by the evidence of the site. ALOT of patients will tell the doctor what is wrong with them and demand medication for it, when actually they DON'T know.
Great catch by an astute physician. This article outlines the importance of seeing a board certified physician, and sub specialists when appropriate! No chance any nurse practitioner in an urgent care clinic would have diagnosed this!
35
@Bare Why do you make this distinction? My life was literally saved by an astute nurse practitioner in a crisis situation so please don't be so quick to dismiss them. I've since turned to NP's as primary care providers because they offer excellent, unrushed care. And their egos are less involved when there's a need to refer to a specialist.
88
@Bare Please do not dismiss nurse practitioners, or physicians assistants, out of hand. The daughter of my best friend is in PA school. When she encountered a patient she was concerned about she advocated strongly with her supervising MD for a test she felt, based on her assessment of her clinical findings, was indicated. Her advocacy was strenuous in the face of the MD’s objections. The MD finally agreed, the test was ordered, and a patient’s life was saved. The surgeon stated the patient was in imminent danger of death from a deeply embedded abdominal aneurysm. When I was a very young psychiatric technician, I advocated for an MRI for a patient with a three-week hospitalization for treatment-resistant depression. It turns out he had a frontal lobe meningioma. Healthcare functions best when a team of professionals are involved.
41
@Bare
Why single out nps. They have an important role in healthcare. Not fair.
11
Interesting story, however on the downside you just cost medicare, medicaid and private insurance millions of dollars in costs with countless hypochondriacs running to their doctors convinced they have the malady.
9
@Paul Boy what a negative comment...
9
What a random comment. The whole point was that a rash on palms and soles is quite unusual.
11
@Paul - Only the ones that read the NYTimes.
2
It could be that a dermatologist would agree with the initial impression of HFMD, but there is also a chance that a dermatologist might have encountered specifically rat bite disease somewhere along the line either clinically or in the readings and as much more than a footnote. The young lady is fortunate that a particular doctor had a particular question on an exam (and a terrific memory).
The fever, pain, inflammation are common to many other illnesses, but the rash stands out as unusual so that seems like the place to start rather than the more general symptoms however awful they may be. What change made the patient get out of bed and struggle to the hospital - rash on palm and plantar surfaces accompanied by severe pain. As has been said in this column before, sometimes you really do need to look for zebras.
The article caught my attention because I was treated successfully by a dermatologist for a different palm and plantar rash many years ago (welts, itching, pain), but that treatment involved a nasty coal-tar based ointment and wearing gloves and socks at night. Not pretty.
In my world there is no such thing as a cute baby mouse, but I'm an old monster and I'm rooting for the barn cats.
47
Another very informative piece in this Series.
I join others below in congratulations on this excellent series.
Having traveled around the world and now been to more than 114 countries - I think the rule should be don't handle animals that are not pets.
And even some pets - not yours - could be disease carriers.
Here in India - there are so many stray dogs - because of some stupid government minister decreed so.
I see folks petting them - I want to alert them to some of these consequences.
I stay safe by crossing the street.
50
Enjoy the articles that Lisa Sanders writes in general, but in this case was also struck by the visual which was powerful and ominous in its sheer innocuousness!
15
Always fun to read these medical “mysteries “ that involve dermatological complaints where a dermatologist is never consulted. Diagnoses are difficult to make when they are never considered. Dermatologists are specialists trained for making these diagnoses.
36
@Steven Caplan
That is a good question: I found an article about identifying RBF when it presents with a rash in JAMA Dermatology.
4
@Steven Caplan
I spent a fortune dealing with an incompetent Dermatologist over a period of 5 months. I finally tried a home remedy of tea tree oil (which the Dermatologist claimed was voodoo medicine). The rash and itching stopped within a week.
4
No, infectious disease specialists are the ones trained to diagnose infectious diseases. It’s unlikely a dermatologist would have put this all together.
8
Here's a thought - suppose she had been given penicillin even withou the diagnosis? Is part of the problem that doctors have become so reluctant to give antibiotics that many patients are suffering unnecessarily?
14
@Cloudy
That is exactly the behavior in the abuse of antibiotics and other medicine that contributed to the increase of drug resistant microorganism and delay in accurate diagnosis.
58
@Cloudy
The article states that she required six weeks of IV penicillin. That's not a dose anyone would ever receive without a proper diagnosis.
66
@Cloudy
Apparently, she required six weeks of IV penicillin. A typical dose of penicillin would not have cured her and might have made it more difficult to culture the organism and make the diagnosis. Maybe someone else who is more knowledgeable would care to comment.
56
It seems to me that someone could write a rare disease triage program. Rather than relying on whether a doctor remembers a rare disease that cropped up once on a test, years ago.
The results could prompt useful questions, like have you handled rodents recently.
159
@SAO
I think you are correct.
This story is a matter of being seen by the one physician who blew a question on an exam and was told to do that review again.
All the other doctors who saw this patient never thought to ask the one question that provided the answer.
Pilots use a check list before taking off. Doctors could use a check list to run a diagnosis, based on symptoms presented. A computer based system would not ignore even the more obscure possibilities.
37
@SAO
I have read about GIDEON, which as I understand was created to do what you suggest, tried to check and provide a link, but it is beyond a paywall.
Perhaps someone with access to GIDEON could comment.
https://library.medicine.yale.edu/blog/gideon-global-infectious-diseases-epidemiology-network
6
@SAO What you are referring to is a "differential diagnosis" for the symptoms and signs of a patient. Lists of them do exist but don't know if there is a centralized data resource. How to navigate through the list, the algorithm, once you find it, is totally different matter.
@Lynn Went to the link you provided. It does not appear to have the above and is geared more for research with the disease as the starting point instead of the endpoint in a differential diagnosis.
1
An engrossing tale, and again, a young Dr succeeds - with prodding. It also is a reminder for patients to think really carefully and provide a comprehensive history. A nip from a mouse is a little unusual. Without the story of a bite, who would look for a rat?
75
@cheryl It was the doctor who sat down with the patient and asked the patient to describe from the beginning, and then really listened. I think that is what is commonly missing.
23