A doctor shares his terrifying experience with undiagnosed Lyme disease

February 12, 2016 1:11 PM

"Patients assume doctors are omnipotent and they know everything there is to know about the universe."
posted by trillian (30 comments total)

If this is how difficult it is for a doctor to even get to a diagnosis...
posted by Segundus at 1:52 PM on February 12, 2016

This quote makes me irrationally angry:

How often do you think this happens to people who don’t have the resources or knowledge to question doctors, and how different would your experience have been if you didn’t have connections and confidence to challenge the medical system?

I think it happens more often than we’d like to admit. If you don’t know how to research your problem and you don’t know how to figure out the lingo, then you probably get into this trap of feeling intimidated by the medical profession. I hear it all the time. Patients assume doctors are omnipotent and they know everything there is to know about the universe. And I think that’s a dangerous thing for people who are uninformed. It’s a terrible indictment of the patient-physician relationship. Obviously, that’s a generalization; there are some great physicians out there, but there’s less and less time to spend with your patient.

All of my experiences with doctors has proven the opposite. Every time that I go in with research to back up my claims I get penalized for it. How dare I be educated about my disease! How dare I question a doctor! I have a diagnosis from 2 different well known geneticists and still get poo poo'd and dismissed ALL the time. I have some really crazy stories of the things docs have said to me.They are not gods, they are just as irrational and subject to bias as the rest of us. I have met some real whackadoodles. I always go into meeting a new doctor with an open mind and I don't throw a bunch of literature at them in the first appointment. In my experience doctors do NOT like an educated patient.
posted by futz at 1:56 PM on February 12, 2016 [44 favorites]

I agree, futz. Really sorry that continues to happen to you.
posted by areaperson at 2:00 PM on February 12, 2016 [2 favorites]

Last week, I saw my doctor and she ordered bloodwork after I broke down in tears talking about how I was always tired, and constantly sick. She said she didn't think there was anything wrong with me. I picked up my results a few days before she called me back, and my Vitamin D level was a single digit. So I looked it up, and it was like reading of checklist of how I had been feeling. When my (now former) doctor called me back she told me my results were perfectly fine and the Vitamin D deficiency couldn't possibly be causing my symptoms, which she implied were all in my head. She legit snapped at me when I insisted I was actually feeling quite ill. Educated patients and patients that self-advocate are bad patients.
posted by Ruki at 2:15 PM on February 12, 2016 [23 favorites]

I wish they'd written more about the actual process of diagnosis. When I tried to research Lyme disease via PubMed Central and other freely-available medical resources a couple of years ago, one of the basic problems as I understood it was that the test that's used isn't a straightforward yes/no answer and isn't very reliable, so that even if you suspect your symptoms line up with the clinically-established symptoms for Lyme (presumably developed via some more effective but less practical-for-mass-use test?) it can be very difficult to confirm or deny that suspicion.
posted by XMLicious at 2:50 PM on February 12, 2016

Has anyone built a model for what's going on when a patient attempting to get help finds themselves in this "me against the medical establishment" space where they're not taken seriously and deflected from avenues of investigation/treatment? Who is studying this failure mode and related ones?
posted by wildblueyonder at 3:05 PM on February 12, 2016 [3 favorites]

This article was very interesting and illuminating. Doctors are so blinded by their own "we are actually omnipotent" doctor culture that even after going through this nightmare of misdiagnosis and undiagnosis he STILL thinks it must be the patient's own fault for trusting their doctors too much. Even though he himself did NOT trust his own doctors too much and was constantly questioning them and even though that approach didn't even help himself, an actual doctor! Doctors want it both ways all the time - at the same time that everything is the patient's own fault, the patient must never question or Google or do anything to help themselves. Even though doctors know everything about everything and gained super-powers by doing medicine after being awake for 8000 hours in a row, as soon as something goes wrong oops I guess the patient was just trusting me too much. Their fault again!
posted by bleep at 3:17 PM on February 12, 2016 [13 favorites]

Unfortunately, doctors are mostly pattern recognition machines and if they haven't been exposed to it they won't give the diagnosis a higher weight even if it meets criteria. Every time I hear about a missed case of lyme disease it always involves someone moving from an endemic area to some other part of the U.S. When I did medical school in jersey we had a guy come in seizing and we caught a heart block on EKG like the guy in the article and the first thing we tested him for was lyme. I had a friend I was visiting in Louisville who had 3 days of symptoms and history consistent(just got back from hiking in MA) with lyme disease who was not treated in a hospital until he had the classic rash appear on his back. The advice I give my own patients when questioning me comes from How doctors think
As far as patient's advocating for themselves it's really tough. I've been in a hospital before as patient when I was medical student and when I refused an imaging scan on the basis of it was not the correct for the situation and the nurses called me depressed.Even though the test could have waited a week and didn't need to be done in the hospital. Now that I'm on the flipside it is not going to get better with alot of hospitals focusing on revenue generation than patient care. In the hospital at best i get 15 minutes of face time with each patient and the rest of the day is spent tracking down specialist, lab results, admitting new patients and discharging other patients. Lurie's Childern Hospital has a nice system where patient(or the parent more likely) can call a rapid response patient advocate team if they feel the doctors, nursing, or other clinical staff are not addressing there concerns. Unfortunately most hospitals don't have the resources of Lurie's.
posted by roguewraith at 3:23 PM on February 12, 2016 [5 favorites]

Did you ever consider Lyme disease?
You know, I think within the first year or two of symptoms, it did cross my mind.

Jesus fuck. I had lyme for 3 weeks and then started antibiotics. Basically one weekend of flu symptoms 3 weeks after a trip upstate. With the addition of a circular rash, and I put it together. I was extremely fatigued for 3 more weeks after that, fatigued for a month or two after that, and my wife told me that I was acting more tired for months after. I can't imagine having it be undiagnosed for that length of time as an adult (someone shared a story on ask.me that their kids had it for a year+ and were fine).

It's the only time in my life I've been glad to get a disease badly. If it had been subtle I wouldn't have figured it out, but it put me down so hard and so fast and all the symptoms were super classic.

It wasn't until after after I got it that I found out there's a vaccine but they pulled it from the market in the 80s after people freaked out. So... get your pets vaccinated if you live in/near Connecticut, but as for yourself: *shrug*
posted by Phredward at 3:40 PM on February 12, 2016

And don't doctors often not order the full Lyme panel? Are there still 2 different tests? Western Blot and another?
posted by futz at 3:49 PM on February 12, 2016

I sometimes wonder if I have Lyme disease. The doctors aren't much interested in this idea, though, and it's hard to know whether to push it.
posted by elizilla at 3:52 PM on February 12, 2016 [1 favorite]

Push it. It is your health!
posted by futz at 3:58 PM on February 12, 2016 [1 favorite]

Patients assume doctors are omnipotent and they know everything there is to know about the universe, and doctors come to expect to be treated that way and shut patients down HARD when they don't fall into line, unless those patients too are MDs. When my grandma was in the cardiac ICU we just got my cardiologist cousin on the phone whenever the doctor came in because literally anything that anyone else said to him was flat-out ignored.

My job offers a really nice little perk as part of our health insurance, which is a second opinion service. You send them an email saying you'd like a second opinion and they call around to your doctor's offices and get your records, and then they send those records to a couple of doctors who write you a little report of their thoughts. I didn't end up needing to start a conversation with my doctor about my second opinion package but I did think, "Gee, it'd be nice to take this little printout to my doctor and say, 'Here, look, I'm just a dumb lady with a mouth full of teeth but this other DOCTOR, a PERSON WITH A MEDICAL DEGREE, said this after looking at my chart,' rather than having to say, 'I found this probably pertinent information myself on the internet.'"
posted by town of cats at 3:59 PM on February 12, 2016 [3 favorites]

She legit snapped at me when I insisted I was actually feeling quite ill.

Geez, Ruki - that's terrible - DTMFA

i hope that comes across with the intended amount of dark humor
posted by kokaku at 4:11 PM on February 12, 2016 [2 favorites]

My instincts were always screaming, This is not stress. But after several years, you do start to think, Are they right?

I have three non-MD degrees in the realm of human health, and have known I have Crohn's disease since I was 11 years old. To this day, when I visit a new physician, I bring up this information and am met with a side-eye. I've learned to deal with it by being a Very Difficult Patient. That means I come in with a written stack of questions, I say during our introductions "hello I am trained in this field and will leave this office when I have written responses for these questions," and I question the value and follow-up on any recommendation made. I feel well-equipped for this most of the time, until I feel very unwell and then I begin to feebly move toward this sentiment--are they right, despite what I know?

I've volunteered to be a 'translator' of medical matters for many of my family and friends, because few things chap my hide like this problem does. I've caught a few very bad errors over the years, including a doctor who told my partner his blood glucose was "just fine" when it was well over 200 mg/dL two appointments in a row. That one was bad enough that we followed up with the practice. But good lord, who would ever dare to do that on their own? Not many, myself included.

Second opinions, man. Those things are the best (as is saying in an appointment, I would like a second opinion). The reminder of scrutiny from trained eyes can be a metaphorical moment for an otherwise rushed physician that they've just sped by a police car with a visible radar gun. Slow the fuck down and pay attention to the road, doctor.
posted by late afternoon dreaming hotel at 4:18 PM on February 12, 2016 [6 favorites]

Also, I've been thinking for quite some time that medical schools should start using "Has been treated for a significant/hard-to-diagnose medical problem" as an admissions criterion. Most humans are mostly healthy, and especially most upper-middle-class humans are mostly healthy, and hence most doctors are mostly healthy. My sister is in med school right now and I don't see her compassion evaporating the way I've seen it happen with a lot of other friends and relatives who've been through the med school wringer, and I suspect it's because she's already been on the other side of the white coat. She gets how fucking frustrating it is to be told you should probably just "decrease your stress" when the medication isn't making a difference.

She definitely wrote about her life as a patient in her essays and I hope it helped. Anyone can learn this sort of compassion, but having been in the patient's shoes can be a great boost. Remembering what it feels like to have a doc shut you down or dismiss you is powerful and many doctors don't know what it's like, and will never, ever find out, because when they go to doctors they get the special MD treatment.
posted by town of cats at 4:19 PM on February 12, 2016 [6 favorites]

town of cats, that is an awesome perk.

'Here, look, I'm just a dumb lady with a mouth full of teeth but this other DOCTOR, a PERSON WITH A MEDICAL DEGREE, said this after looking at my chart,' rather than having to say, 'I found this probably pertinent information myself on the internet.'"

The catch is that most of the doctors that I have seen dismiss the opinions/diagnoses of other doctors. I am beating a dead horse here but having 2 geneticists from 2 different institutions in 2 different states really hasn't helped me much. And one of them was the go to guy/top of his field for my syndrome.

*insert loud unintelligible noises here.
posted by futz at 4:27 PM on February 12, 2016 [1 favorite]

The comments on that article are worth reading, and include some assertions I haven't seen before:

Remember, Lyme is an STD as well. Get your partner an Igenex #188 or 189 lyme test before you have unprotected sex. It was shortly after my wedding to a deer hunter from back east that I came down with the freight train of symptoms of lyme, which continued unabated until I was diagnosed with MS 5 years later (Lyme is one cause of MS).
http://www.mensfitness.com/women/sex-tips/newest-std-lyme-disease
--------
Mainstream medicine is still using the same western blot/elisa test from 25 plus years ago. The test for the bodies ability to make antibodies and not the bacteria itself. Did I mention it only test for one strain when there are actually 100 strains or more. Yes some good tests are out there but they are not approved by CDC and IDSA. That is the reality of testing.
---------
...Here's why - there are now at least 16 species of Borrelia, the bacteria which causes Lyme Disease. Most stats only include the most widely known about spp Borrelia Burgdorferi. Additionally it's now known that mosquitoes, spiders, fleas and mites can transmit the bacteria.
--------

for which I'd like to see some confirmation.

And there's a fairly succinct statement of the same old assertion, for which I've never seen a truly satisfactory disconfirmation:

The CDC has been dragging its feet for decades concerning Lyme disease. Is it because it was created at the bio-weapons research facility at Plum Island, about 9.5 miles from Old Lyme, CT (where the weaponized version of Lyme disease was first found)? Hopefully the release of this disease was an unintentional accident due to the documented poor containment procedures practiced at Plum Island. There's much information about this and the purported CDC cover up available on the web. Ask yourself: why was the CDC so reticent to acknowledge the existence of Lyme? Why does the CDC downplay the seriousness of Lyme, even up to this day? Why were doctors who diagnosed and treated Lyme persecuted? The story of Lyme disease is a national scandal that needs to be exposed and owned up to. There are so many smoking guns in this debacle that it's hard to come to any other conclusion if you read the literature.

posted by jamjam at 6:58 PM on February 12, 2016 [4 favorites]

for which I'd like to see some confirmation.

Me too. Lyme disease is a magnet both for cranky internet hypochondriacs and quacks who want to capitalize on the vague symptoms and difficult diagnosis. The comments you're reading display the standard range of ignorance and whacked-out nonsense about this disease.

I've also noticed a trend in health clinics promoting the idea that "your symptoms must be chronic Lyme disease", and "all those other tests are inadequate; only our test can accurately detect Lyme disease". Their goal appears to be to sell expensive long-term antibiotic treatments, in spite of statements like this from CDC:

"Regardless of the cause of [Post-Treatment Lyme Disease Syndrome], studies have not shown that patients who received prolonged courses of antibiotics do better in the long run than patients treated with placebo. Furthermore, long-term antibiotic treatment for Lyme disease has been associated with serious complications."

As if the disease wasn't bad enough, the sheer volume of misinformation and snake-oil going around makes it very difficult for both doctors and patients. I have a different ailment, and I wanted to learn about Lyme disease because an acquaintance who claims to have had it told me "You have chronic Lyme disease! Here's what you need to do..." and began spouting the kind of conspiratorial nonsense you see in those comments. I have a science background and believe in the germ theory of disease, so don't be giving me that hogwash about MS, STDs or biological weapons.
posted by sneebler at 7:33 PM on February 12, 2016 [9 favorites]

...and, after all that, doctors can still be wrong.
posted by sneebler at 7:36 PM on February 12, 2016 [1 favorite]

Going to a doctor with an ailment is akin to taking your car to a mechanic with a problem.

They both attempt to diagnose based on complaints and symptoms. Often times employing mysteriously sophisticated diagnostic tools.

Then both attempt to repair the problem. Sometimes they succeed. Sometimes they do not.
posted by notreally at 9:06 PM on February 12, 2016 [1 favorite]

My biggest complaint is when doctors write people off for not having an explination of what is wrong.

Or deciding someone is pretending, malingering, delusional, health anxiety etc AND then but don't actually give referrals or treatment for that. They just ignore the patient.

It frustrates me to no end, and people who are really sick don't get the care they desperately need.

I was sick for years, so sick I didn't know how sick I was. People had told me I might have fibromyalgia bit I ignored it because I didn't want to be long trauma history girl seeking treatment for psychological reasons. I actually asked my psychiatrist for lyrica. It completely changed my life. My PCP saw me after and couldn't believe the change. My psychiatrist couldn't believe it either. I went from barely making it through my day to living a full life. Symptoms that were thought of as depression and PTSD disapeared. (I do have PTSD, but I have the energy to manage and cope better.) But someone listened to me. Someone thought well let's try.

Many people never even get that chance.
posted by AlexiaSky at 9:26 PM on February 12, 2016 [3 favorites]

Going to a doctor with an ailment is akin to taking your car to a mechanic with a problem.


You might be onto something here...both cars and people have an intake, exhaust, and tubes...

Oh wait, they are not alike at all, notreally.
posted by futz at 10:01 PM on February 12, 2016 [3 favorites]

Well people are far more complicated than cars but I think that notreally's point is valid, that it's fundamentally the same sort of problem solving. It's an attempt to diagnose a specific individual during a relatively small window of time and opportunity, based upon a summarized verbal description of symptoms, using principles and models based upon abstractions derived from many other widely-varying individuals. As opposed to problem solving along the lines of finding a flaw in a mathematical proof, or statistical quality control where you don't care about the individual widget but rather it's the repeated manufacturing process of nearly-identical widgets that you're working on.
posted by XMLicious at 11:25 PM on February 12, 2016 [1 favorite]

I'm taking a course on the anthropology of science and medicine right now, and one thing that's struck me is how much we're in a constant state of fear about our own health. We really don't know what defines good health because the guidelines are constantly being revised. More to the point, there's so many possible root causes for any grouping of symptoms that sometimes it's impossible to ever be certain what's going on. We can run blood tests and compare them to acceptable standards, but sometimes - as with my partner's thyroid disease - the line between "healthy" and "sick" is how you compare to a general guideline. You can be sick and not even know it. Or you can be hobbled by something and be told it's all in your head because your numbers indicate you're OK. It removes part of your subjective experience from the assessment of your health. It's depersonalizing.

I can relate too well to what Spector was saying about being told it's "all in your head." I've had joint pain and fatigue for years. I've hoped, for years, that some test would indicate something because, as much as I want treatment, I also want the validation that my sense of feeling unwell is within reason. If it's all in your head you're being unreasonable. But if a number dips above or below a certain level, then you've got a right to complain. It's maddening. Maybe I have Lyme disease, or maybe I'm really stressed; either way, something is going on, except one gets taken more seriously than the other. But functionally, both have the same effect. It makes it hard to place a lot of faith in medicine when it fails to do its basic job of helping you feel well.
posted by teponaztli at 2:55 AM on February 13, 2016 [3 favorites]

elizilla: "I sometimes wonder if I have Lyme disease. The doctors aren't much interested in this idea, though, and it's hard to know whether to push it."

futz: "Push it. It is your health!"

Part of the underlying problem here is that diagnostics done right is hard, really really hard in ways that can be difficult to wrap your brain around.

So say a new medical test has been shown to be effective in the early detection of an illness, and as an otherwise healthy patient you take it. The probability that the test correctly identifies the illness as positive is 0.99, and the probability that the test correctly identifies someone without the illness as negative is 0.95. The incidence of the illness in the general population is 0.0001. You test positive, and this seems like an accurate enough test, but given these circumstances what is the probability that you actually have the illness? The answer is about 1 in 500, because statistics. If this test is performed on just random people it will detect 499 false positives for every true positive as it gets so many chances to fuck up for every true opportunity it has to get it right. This gets particularly tricky for Lyme because the best combination of two immunoassays that we have for detecting Lyme is not that great, creating a yet more tricky ambiguity that is difficult enough for doctors who actually know what they're doing to navigate.

I get that this is a really difficult thread to advocate for trusting your physician in, and patient advocacy is super important, but it is still worth respecting how diagnostics is a really non-intuitive discipline that doctors are trained in and how training our best and brightest for nine years in medicine will produce valuable if flawed results. There are honestly, for most people who present with a suspicion that they have Lyme, very good reasons for doctors to not be much interested in the idea - because taking the idea too seriously will necessarily hurt a lot of patients. There is a whole industry of deeply fucked up crackpots dedicated to convincing people that they have Lyme and fleecing them, the treatment is often worse than the disease when its even authentically present particularly for patients who don't super obviously have Lyme, and for large number of patients with the many real serious psychogenic illnesses that present a lot like Lyme having a nebulous disorder like this to fixate on is absolutely the most destructive and harmful thing that can happen.

If you think you might have Lyme than that is absolutely a concern that you should go to your physician for and not the internet, as deeply flawed as your doctor might be, the internet is much much worse.
posted by Blasdelb at 2:55 AM on February 13, 2016 [16 favorites]

jamjam: "And there's a fairly succinct statement of the same old assertion, for which I've never seen a truly satisfactory disconfirmation:"

The CDC has been dragging its feet for decades concerning Lyme disease. Is it because it was created at the bio-weapons research facility at Plum Island, about 9.5 miles from Old Lyme, CT (where the weaponized version of Lyme disease was first found)? Hopefully the release of this disease was an unintentional accident due to the documented poor containment procedures practiced at Plum Island. There's much information about this and the purported CDC cover up available on the web. Ask yourself: why was the CDC so reticent to acknowledge the existence of Lyme? Why does the CDC downplay the seriousness of Lyme, even up to this day? Why were doctors who diagnosed and treated Lyme persecuted? The story of Lyme disease is a national scandal that needs to be exposed and owned up to. There are so many smoking guns in this debacle that it's hard to come to any other conclusion if you read the literature.

I really like you as a poster jamjam, and I always appreciate your perspective on racism in those kinds of threads, but you should feel ashamed of yourself for spreading this kind of narcissistically callous bullshit. These kinds of lurid conspiracy theories aren't absentmindedly fun, they cause enormous amounts of damage particularly in vulnerable liberal communities and they hurt real people.

In the wreckage left by our medical system's absurd inability to adequately handle serious chronic, hard to define, and psychosomatic illnesses - particularly when patients are women - a whole community of charlatans has sprung up to take the money of the people they can fool with their bullshit who have been pretty universally poorly served by the real professionals whose job is to care for them. The scheme generally starts with someone experiencing some set of the many many symptoms that have come to be associated with "Chronic Lyme Syndrome" being directed to "Lyme-literate" physicians who will then perform any number of ridiculous diagnostic tests that are intentionally designed in such a way as to produce false positives for Lyme. The test recommended by the CDC is a clever mix of two immunoassays, one with high specificity but poor sensitivity and one with high sensitivity but poor specificity, that is designed to rule out both false positives and false negatives as much as possible. However these fucknuggets have come up with such an impressive array of sciency sounding shitty PCRs, shitty ELIZAs, and adapted just about every shitty woo diagnostic that its really impossible to debunk them all. They then either prescribe the truly awful IV antibiotics that aren't even often necessary for genuine cases of Lyme and hold patients on them for far longer than the three weeks that is needed, or they just pull some random bullshit treatment out of their asses.

This screed comes exclusively from their need to justify why people should trust them and their assorted bullshit rather than the professionals at the CDC who actually fucking know what they're doing. Never-mind that nothing about Lyme even starts to make sense as a bioweapon,* how could some kind of vast conspiracy like this even begin to fool not only the whole medical research community and medical infrastructure, but also only be uncovered by these narcissistic clowns? Our liberal communities are filled with these assholes with book deals and profitably bullshit products to sell who prey on our distrust for authority, for a quick buck, whatever jollies they get from being the woo king of their own bullshit hill, and particularly with Lyme the attentions of vulnerable women. With Lyme they use this to justify trapping people in incorrect diagnoses, applying all sorts of horrifying idiosyncratic treatments like infecting Kathleen Hanna of Bikini Kill with Babesia, and causing our advocacy to just crawl up its own ass to wiggle around at best harmless to the genuine forces that are actually oppressing us.

Fuck this shit, fuck everything about it.

*For a bioweapon intended for use against humans to be conceivably useful it ideally needs high infectivity, high virulence, no available vaccines that could be given to enemy military personnel, and availability of an effective and efficient delivery system. That way it can be used as an area denial system, like landmines but somehow even worse, to prevent infantry from occupying or traveling through a location. Lyme disease not only isn't any of these things but it also wouldn't at all be a promising agent for developing it into any of these things. It takes a lot of effort to infect humans with it, it's super mild compared to what you would need for an effective bioweapon, the vaccine for it was relatively straightforward to develop and would be trivial to provide to soldiers, and it would take a lot of effort to 'deploy.' For better or worse, both the United States and the Soviet Union perfected the destructiveness of bioweapon technology well past the horrific point where it could ever conceivably be 'improved' in the 70s with a collection of terrifying bacteria and viruses. Since then the only work that has been done with bioweapons has been on countermeasures against them, which idealistically would be for defensive purposes and cynically would only make their deployment more useful.
posted by Blasdelb at 4:05 AM on February 13, 2016 [8 favorites]

I have a friend who had a legitimate diagnosis of Lyme and ended up being treated by the quack industry after she went online looking for treatment information, and the 'treatment' made things a lot worse (and also made her kids sick after they got put on it for no reason). So that's my background. Lot of good stuff here about doctors not paying attention to real problems that are going on with patients, but Blasdelb is right on about Lyme in particular being something doctors aren't interested in unless there's a rash or a found tick. Too many people go to Dr. Google first and find the Lyme quacks, so if you really do have it it's going to be hard to filter that out from the noise.
posted by Electric Elf at 6:42 AM on February 13, 2016 [1 favorite]

Wasn't a terrible article; Dr Spector's experiences with his Lyme disease, struggle toward diagnosis and treatment, and reflections on patient/doctor roles and experiences had some good points. But as others have pointed out, the "It was me against the medical Establishment" attitude encourages vast, sweeping generalisations against 'doctors' as if they're one large white-coated conspiracy, sneering at their patients and making uninformed guesses. To be sure, there are members of any profession with those attitudes and habits, but painting with a broad brush is not only untruthful, it's unhelpful.

I'm a medical student in the United Kingdom, and I can definitely see already there's very sound basis for the problems that thousands of patients have described experiencing with their physicians (assumption, not being taken seriously, failure to consider evidence, rudeness, etc).

Our lecturers (and lecturing doctors) are well aware of the mindsets that contribute to these issues, so they go to great lengths to try and avoid them: lectures and seminars on assumption, cognitive biases, (from confirmation bias to the Texas sharpshooter fallacy and beyond), on the sensitivity/specificity of testing, detailed explanations of why a positive/negative test (or a variable that appears normal/abnormal) never provides a definite answer. We're urged again and again to ask about the patient's ideas about what might be wrong with them, to listen to their concerns and their expectations for what they need, to continually question our own thought-processes.

This is what gets me down; a lot of people I know (probably the majority) treat this kind of teaching like an inconvenience they can just shrug off as it's 'not part of real practice'. The phrase that gets used is 'soft stuff', as though real doctors just make their own decisions without questioning their assumptions and conclusions. And when we get our group problem-based-learning assignments each week, (like an imaginary case that we have to diagnose, work through and decide treatment, while learning about all the relevant issues), I try to gently and politely remind people that just because a patient's sodium/potassium/ALT etc is not marked as being 'abnormal', doesn't mean it's not of concern, and that an abnormal one doesn't always indicate pathology; to pay attention to what the patient wants, and think again before making decisions on treatment.

Mostly they roll their eyes at me and say I'm unnecessarily holding back the process and wasting time, but I'm going to keep at it. And if things stay on track, and I make it to clinical practice, I will do everything that I can never to ignore a patient's thoughts about what might be causing their symptoms, embrace criticism from nurses, healthcare professionals and fellow doctors, to consider whether my conclusions are really warranted by the evidence, and to keep the basic principles of the scientific method in mind as well as basic human decency. To be sure, I'll definitely make mistakes, and I may even have a bad day where I end up being the arrogant doctor that nobody wants. But I hope I can say (without arrogance) I'll still be better than most for trying.

And if I ever need a reminder that I'm not all-knowing, all-powerful or the boss of everyone else, in this country we mostly wear the same clothes as everyone else.
posted by The Zeroth Law at 6:06 AM on February 14, 2016 [6 favorites]

Remember, Lyme is an STD as well. Get your partner an Igenex #188 or 189 lyme test before you have unprotected sex. It was shortly after my wedding to a deer hunter from back east that I came down with the freight train of symptoms of lyme, which continued unabated until I was diagnosed with MS 5 years later (Lyme is one cause of MS).
http://www.mensfitness.com/women/sex-tips/newest-std-lyme-disease

OK, so this is what the grownups at the CDC have to say about the sexual transmission of Lyme:

There is no credible scientific evidence that Lyme disease can be spread from person-to-person through sexual contact. The biology of the Lyme spirochete is not consistent with sexual transmission, attempts to demonstrate sexual transmission in infected animals have all failed, and there has not been a single, adequately documented case of sexual transmission of Lyme disease reported in the scientific literature.

The following are some of the false arguments put forth to suggest sexual transmission:

Borrelia burgdorferi and Treponema pallidum (the cause of syphilis) are both spirochetes (cork screw shaped bacteria). Therefore, B. burgdorferi can be transmitted like syphilis. Not true. Although B. burgdorferi and T. pallidum are both spirochetes, they are not closely related. More importantly, they behave very differently within humans in ways that affect their potential for sexual transmission. T. pallidum spirochetes produce moist, superficial skin lesions (e.g., chancres on the genital, anal or oral mucosa) that contain enormous numbers of living spirochetes and are crucial to transmission by sexual contact. In contrast, B. burgdorferi spirochetes cannot survive on the surface of the skin or genital mucosa. They are present only in sparse numbers and only in the deep inner layers of the skin. Whereas syphilis spirochetes can penetrate the skin directly, Lyme disease spirochetes require a highly ordered metabolic process associated with feeding by certain species of ticks.

Borrelia burgdorferi has been isolated from breast milk and semen. Actually, it hasn't. A single study reportedly found evidence of Borrelia DNA in breast milk using a polymerase chain reaction (PCR) assay. PCR assays detect DNA from dead or living organisms, do not demonstrate the presence of living organisms, and are prone to false positive results. Peer-reviewed and published studies of semen have involved collecting semen from animals, inoculating the semen with bacterial growth media and millions of B. burgdorferi, and then artificially inseminating the animal with the media containing experimentally B. burgdorferi infected semen. The results of these studies provide no evidence that B. burgdorferi occurs naturally in semen.

Husband and wife both have Lyme disease, and at least one doesn't remember a tick bite. It is not uncommon for more than one person in a household to develop Lyme disease. This occurs because household members share the same environment where infected ticks are abundant. Patients are often unaware of having been bitten because the ticks that transmit Lyme disease are extremely small.

References:
Woodrum JE, Oliver JH, Jr., 1999. Investigation of venereal, transplacental, and contact transmission of the Lyme disease spirochete, Borrelia burgdorferi, in Syrian hamsters. J Parasitol 85: 426-30.
Moody KD, Barthold SW, 1991. Relative infectivity of Borrelia burgdorferi in Lewis rats by various routes of inoculation. Am J Trop Med Hyg 44: 135-9.
Schmid GP, 1989. Epidemiology and clinical similarities of human spirochetal diseases. Rev Infect Dis 11 Suppl 6: S1460-9.
Porcella SF, Schwan TG, 2001. Borrelia burgdorferi and Treponema pallidum: a comparison of functional genomics, environmental adaptations, and pathogenic mechanisms. J Clin Invest 107: 651-6.
Schmidt BL, Aberer E, Stockenhuber C, Klade H, Breier F, Luger A, 1995. Detection of Borrelia burgdorferi DNA by polymerase chain reaction in the urine and breast milk of patients with Lyme borreliosis. Diagn Microbiol Infect Dis 21: 121-8.
Kumi-Diaka J, Harris O, 1995. Viability of Borrelia burgdorferi in stored semen. Br Vet J 151: 221-4.

Incidentally, the only reason the fuckers at IGeneX aren't in jail yet is they have managed to jam themselves into a loophole in the FDA regulation of diagnostic testing where they are not required to make any demonstration of any kind of the efficacy of their tests
posted by Blasdelb at 7:41 AM on February 17, 2016 [4 favorites]