Wednesday, 2 December 2015

The REAL truth about that coffee mug

I'm talking about "that" coffee mug.  The only way you wouldn't know what the hell I'm talking about is if you don't follow me on Twitter, and if you're reading this, I find that hard to believe.  Seriously, there's a little "Follow me" button right over there ----->

Go click it.

Regardless, for those few of you who still have no idea what I mean, here is the coffee mug in question:
It's a hilarious, if not sadly accurate commentary on the state of medicine in 2015 that has been making its way around the Internetosphere over the past few days.  I've written about exactly this issue in The Daily Beast (it was the first article I wrote, in fact), and I've continued talking about it to whomever is unlucky enough to listen to me.  So it was with great amusement that I came across and tweeted this picture yesterday, and it was with the same great amusement that I showed it gleefully to Mrs. Bastard, who was just as amused as I.

Not everyone is amused, however.

Some people are taking it way too seriously, like Dave deBronkart, also known as "e-patient Dave", a blogger at e-patient.com.  This morning my wife forwarded me a piece that Dave wrote this week titled "The truth about that 'your Googling and my medical degree' mug" in which he says that Googling is not a sign of patients thinking they are doctors, it is a sign of people making themselves "engaged, empowered, e-patient(s)".

Dave quite correctly says that a well-informed patient is a good patient - one that partners with his doctor to come to a decision that is best for the patient.  He also quite correctly says that doctors who insist they are right are terrible practitioners, because no one knows everything about everything.  I can not and would not disagree with anything Mr. deBronkart said.  That is not "the truth" about the mug, however.

What I would disagree with is Dave's main point - that patients who use google to learn about their condition are necessarily well informed, and therefore better patients.  They may be, but it all depends on where they get their information.

As an experiment, I googled "colon cancer".  It took google exactly 0.27 seconds to come back with 14.5 million hits.
Scrolling down through the results, the information is generally excellent - the Mayo Clinic, medicinenet, and the National Cancer Institute, the American Cancer Society, the National Library of Medicine, webMD, and MD Anderson are the first 7 hits (Wikipedia is the 8th).  If anyone were to read any of those sites, the information would most likely be highly accurate, and that patient would end up better informed for reading it.

But not everyone reads those articles.  Googling "colon cancer cure" gave me 1.75 million hits, and there it was on page 2: "Lindsey: Cures Colon Cancer With Cannabis in 48 days".  Of course this is a much sexier title than "Treating bowel cancer", and of course the headline is designed to encourage clicks. And what the article does is chronicle a woman's story of conventional colon cancer treatment with surgery and evil toxic Big Pharma chemo, followed by a supposed cure with cannabis oil.

Unfortunately not everyone is going to look up conventional (read: effective) treatment of colon cancer, because conventional is the alternative to the evil toxic Big Pharma chemo that people are looking for these days.  Going one more step down the rabbit hole, I googled "colon cancer alternative", which yielded nearly 7 million hits.  And that's where the real BS starts:
You can see where I'm going with this.  And that is just for colon cancer.  I wisely decided not to delve into some of the more controversial medical diagnoses, like fibromyalgia, chronic Lyme disease, and adrenal fatigue.

The internet is truly a wonderful cache of medical knowledge, full of useful information.  But it is also a vast wasteland of pseudoscience, questionable practices, and outright bullshit.  What makes it so dangerous is that many people can not tell the difference.

Do I discourage my patients from researching their conditions?  Absolutely not.  Well-informed patients are almost always easier to talk to (and by extension easier to care for).  But I always refer patients to reputable websites, and advise them to avoid questionable sites.

And Natural News should be avoided like the plague.

91 comments:

  1. well informed patients are like unicorns.

    well, not quite, but you get the picture.

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    1. I don't think they fart rainbows though.

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    2. I'm pretty sure I've puked up a rainbow or two in recent months… but I'm a zebra, not a unicorn. :(

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  2. A simple Google search can sometimes disprove an entire academic paper. It's useless if you don't know how to apply them.

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  3. It is cannabis not cannibis.

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    1. Right you are. And I made that mistake twice without realising it. Shameful.

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    2. I just figured you werer quoting the clickbait verbatim.

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  4. My (former) GP had me on a heavy dose of a popular statin medicine to reduce my cholesterol. It was still 5 points (yes, FIVE points) too high for her liking. She wanted to double my dose.
    When I told her the leg cramps were just about debilitating, she said "but high cholesterol will cause a stroke." When my blood tests showed that my liver numbers were rapidly rising, I went the Pfizer website. It said to stop the medication if liver numbers were above a number I passed a month ago. When I told her I wouldn't double the dose (to reduce 115 to below 110), she told me "You can't believe what you read on the internet. Liver numbers aren't important. Trust me. We won't test your liver function any more, if it worries you" So I told her I hadn't gone to Google answers, but the website of the folks who MAKE the damn medicine!
    And I realized I didn't, actually, trust her.
    And I switched docs to a woman who put me on a cholesterol medicine that metabolizes through the kidneys rather than the liver.

    I greatly respect a medical degree, but I am also going to try to educate myself so I can at least understand the discussion.

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    1. Your former GP was correct. The best indicator of true liver injury is the serum bilirubin level not the transaminase level. The elevation of the transaminase often resolves itself spontaneously.

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    2. Did I say it was a transaminase test? No, I didn't think so.

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    4. and how is the serum bilirubin level expressed?

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    5. "When I told her the leg cramps were just about debilitating, she said "but high cholesterol will cause a stroke."

      I wonder why she didn't pay attention to her patient who is pointing that this was also affecting her patient and should be addressed.

      Well, in the end, is the new medication working? Has your cholesterol levels dropped still further? I hope so and I also hope that without the leg cramps you've also been able to be more physically active. Getting out and walking around to see the sights and so on.

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    6. This same (former) doc asked if I get heartburn. My honest answer: once or twice a year. Gaviscon clears it right up. She put in my file that I have acid reflux disease and tried to get me on a prescription medication that I would take daily forever. She also decided that I (at 61) am gluten-intolerant, just based on my "frequent heartburn".
      And she ignored my ibuprofen allergy ("Are you SURE you're allergic to it?"), suggesting I take it for the leg cramps.
      Yes, the cramps are gone. And my cholesterol is down. I just seem to have gotten (rid of) the rare doc who doesn't listen much to her patients.

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    7. Are you on diuretics for hypertension? Inhalers for asthma or copd? They can cause leg cramps too.

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    8. Absolutely, do your own research. YOU are the important one, doctors will never take the time to research. I have had four instances where I have taught the doctors, yes with research papers and documentation, and the truth. But only if they had listened earlier!

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    9. Angela - You've obviously had a bad experience with doctors. That's unfortunate. But what is even more unfortunate is your attitude towards us and your misguided (and frankly offensive) belief that we "never take the time to research". Look in any doctor's office and you'll find a stack of medical journals. For us, the education never stops. We are CONSTANTLY researching.

      Maybe you need to step back and re-evaluate your bias.

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    10. "We'll stop testing your liver function if it worries you"?! Now THAT is a bad solution. I would have walked out on her right then. As a zebra, I have had plenty of experience with the OP's type of doctor where the problems I was having were ignored and the non-issues were exaggerated. It happens, particularly when you are muddling about in the world of clinical diagnoses, and if you hang out in the chronic illness forums (especially fibromyalgia, it seems, probably because it's so under researched and controversial at the moment) you will see a lot of comments like Angela's. It's an understandable reaction to people who have been burned by doctors that didn't know better or didn't care enough, for whatever reasons.
      (The rheumatologist I was speaking about asked me why I was using a walker, and when I had started. I began using it in December of the previous year, and it was now May. I'd brought it to every appointment with me, but in my record notes it states that the patient had begun using a walker though the doctor didn't see the need for it and that I claimed I'd been using it for months already and she was positive I was exaggerating. I got that word "exaggerating" from her a lot.)

      I sincerely appreciate Doc's approach to medicine, though, and his mindset. I spent too much time with the time wasting doctors at first because I didn't yet know how to advocate for myself, but now that I do, I make sure that I know all I can about my diseases and the medications and treatments I require, because knowing about my body is my job. I can't expect the doctor to memorize everything for me, but I also recognize that I do not have a medical degree. So it's a partnership between patient and physician, as long as both don't try to be tyrants.

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  5. IMHO, a reasonable balance works best. Using the internet to educate ourselves about a health challenge allows us to better understand and manage the condition, and to ask our doctors reasonable questions and get sensible answers. But I've always found that, in the end, following the advice of a doctor who knows my particular situation *and* also has the benefit of experience is the best choice.

    Doctors are, for me, the best qualified resource to help us find our way through what I call "TMI confusion." In these times, we have access to SO much information. We do research on the internet. We constantly see TV commercials about various health conditions, sponsored by the companies who make the medications that are supposed to "help." We read the obligatory informational warnings on the printouts that come with every prescription medication we pick up at the pharmacy, and on the packages of over-the-counter meds.

    Sometimes it's hard to make sense of it all. We see that a particular medication "may cause constipation or diarrhea." WTF does *that* mean? Will we need laxatives to unstop our bowels, or should we gulp some Pepto Bismol every day to soothe irritated lower intestines? Another medication "may cause drowsiness or insomnia." Should we stock up on energy drinks, or plan to take a sleeping pill each night? It gets confusing.

    Best example that comes to mind from my own recent experience last year, when I began getting recurring heartburn and unexplained nausea despite no changes in diet or other routines. Diagnosis was GERD, I had the lab test for bacterial infection that turned out negative, so my doc suggested adding a daily medication in addition to continued special attention to eating habits. She mentioned that the best meds for this were now OTC instead of prescription, so since insurance didn't pay for them, she suggested a "store brand" (generic) instead of the more pricey name brands.

    Of course, I had an "informed" question.

    I told her I'd already seen and tried this, and actually gotten considerable relief, but had stopped taking it because the warning on the label said that it was not to be used for more than 14 days. Was it *really* OK to take this every day???

    With a knowing smile, which hinted that she'd heard this before, she explained that the "warning" was to discourage people from continuing to use the medication in a way that might mask *other* conditions that might need medical attention....hiatal hernia that really needs surgical correction, serious esophageal damage or cancer, or even heart disease. Point being...because she's my regular primary care provider, and has complete access to all of my medical records and tests for my entire adult life, she already *knew* I didn't have any of these conditions...so using a medication to help manage stomach acid levels, as well as the other things I'd already been doing, wasn't likely to result in either one of us overlooking a symptom of a more serious health challenge. Worked out fine!

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    1. I think it shows that you have a doctor who also listens to her patient and that leads to a better doctor-patient relationship. You know when your body is off-kilter, she listens, tests, discusses and hopefully between her medical degree and your knowledge of what is working (or not), things improve.

      I'm so glad you're feeling better!

      Wednesday

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    2. The warning is also there because continual use of that medication can cause an inability to absorb vitamin B12 and magnesium. Those deficiencies aren't tested in the CMP. Your doctor would need to know to order them separately.

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    4. @ Lisa - Thanks, we are aware of this. My annual blood tests include these and several other non-standard checks (actually, for a different reason) and no problems so far.

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    5. I heart your first paragraph so much! That sums it up perfectly, in my mind. A good example, too.

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  6. Doc as always a great read. But being a trauma surgeon, I'm surprised you didn't dig into the really asinine googles like how to self treat a gunshot wound. LOL THOSE really are good for entertainment purposes at least! Made me laugh anyway.

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    1. I didn't even think that was a thing. Now I'm going to have to check it out. Thanks for the homework assignment.

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    2. Sorry! LOL There are probably instructions on how to super glue close a stab wound too if ya look hard enough!

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    3. I have hiker friends who superglue deep cuts shut. Their logic is, if it gets infected see a doctor, if it doesn't just stick a band-aide on it so dirt doesn't get in during their next hike.

      Then one day, I take my friend to the hospital because he fell off the roof (don't ask why he was up there), and doctor super glues his head shut. It was actually pretty funny.

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    4. For deep but not to deep cuts my dad gets from lets say cutting himself on a kitchen knife or one of his power tools he just uses superglue. This is because one day he cut his head open and went to the doctor. Ad the doc brought out the superglue my dad asked him if honestly it was any different frkm the type you fjnd in an average store. The doctor shrugged leaned over and kind of whispered that some doctors would have you believe it but no there is no difference as long as its non-toxic superglue you can do it yourself. Course for injuries that are big enough my dad will go get stitches (that hasnt happened in many years but still). Ive personally never had to use superglue myself. Mainly because either my injuries are to small to need it, are breaks or sprains, or are to big for superglue. For those, i use duct tape (in all seriousness: yes i go to the doctor!)

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    5. Wow...that's hilarious. I guess as long as it's sterile...but I would have thought there were chemicals in there that don't play nice in the bloodstream.

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    6. superglue was INVENTED to close incisions - granted medical grade superglue is not quite as... shall we say, "stimulating" as OTC superglue.

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    7. wow--I learned something new then! But I suspect that people who self treat with it are enjoying the more stimulating variety!

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    8. and now you know why it is so easy to glue your fingers together with it.

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  7. Most of this I agree with.

    But when it comes to mental illnesses, you HAVE to at least have an idea of what's going on or they're just pissing in the wind with pills. Their diagnostic test is a 5 minute quick verbal eval.

    My test was basically: "Well, you pulled a lot of all nighter during college and you seem depressed now. Bipolar." Uhm.. No.

    I had to do my own research on the matter to get proper treatment.

    Not to mention once that black mark is on your file everything is psychosomatic. -sigh-

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    1. How bout AS? Would you categorize it as mental illness? Careful now.

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    2. They said nothing about AS.

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    3. I'm not that naïve.

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    4. If you want to try and get professionally offended, be my guest no one is stopping you. I very clearly said mental illnesses, the clue would be in the word "bipolar" or "psychosomatic".

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    5. I simply asked a question.

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    6. A deliberately loaded question isn't "simply a question" if the "wrong" answer would have lead to an asinine debate about something rather inconsequential. ASD, Bipolar, LD's are all signs of the brain not working as it should, and at the end of the day, it doesn't really matter what particular category of brain screw ups they fall under.

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    7. Absolutely. A GP gives a drug, sends ya nuts, then they send you to a psych who is judging you, never ever met you before, but judging you under the influence of the drug you had an adverse reaction too,,,,,,,,,,, can take months for the stuff to get out of your system. Then the psych puts you on 3 times legal level, have seizures, and the psych blames, a hidden bipolar underneath somewhere........ What absolute rot... am trying my best to escape from this absurd nightmare. But the drugs are so damn soul destroying and addictive.

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    8. My story almost to a T. They did an eval based on drugs I was already on. Said I couldn't have an anxiety disorder because I wasn't anxious. No shit, I was on anti-anxiety meds. Luckily the doctor was reasonable, and kept me on low dosages anyway, so when I dismissed her diagnosis and said what I thought I had, she said she'd put me on meds for that, but I had to stay on the other pills as well. Luckily it worked out in the end, but it was a nightmare to get on the right stuff and it didn't help that the place gave me 6 I shit you not, 6 different contradicting diagnoses.

      Then finally getting off them all was horrible with the withdrawl side effects. If I never have a panic attack mixed with brain zaps again, I will die happy.

      Mental health is a nightmare here. Even getting the correct diagnosis didn't really help much, as it's not something you can take a pill for anyway. I'm just shit out of luck unless I have another episode later.

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    9. and the healthcare industry is handicapped by our culture which expects to be able to just take a pill and cure anything in 45 minutes.

      (I'm looking at you, Dr. House.)

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  9. I know this is off topic, but if you work in the hospital, be very careful, watch your back against those jihadists and extremists. 14 people were murdered yesterday, in a hospital, a hospital for disabled people, 60 miles from where I live. What were those idiots thinking attacking a hospital for disabled people?

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    1. 1. It is off topic

      2. The Inland regional center is not a "hospital" for disabled people. It is a community resource center that provides services for developmentally disabled persons as well as other various community services.

      3. The event that was attacked was a Christmas party being held for the employees of the San Bernardino county health department employees.

      4. The motive for the shooting is unconfirmed. There are signs of premeditation and indications that the shooter was radicalized.... No definitive proof as of yet.

      If you're going to spread "news" please be accurate...

      I live and work within a relatively close distance of the area.

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    2. What about the planned parenthood that was just shot up? Should he be paranoid about white Christians? For all we know Doc could be a dark guy who would be a prime target for them.

      That aside, even here in the US most shootings at hospitals are gang related (and most hospitals have good security). People are too spread out to have an effective mass shooting.

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    3. It was a damn christmas party, one went nuts. Again, I wonder what Antidepressants he was recently put on? One has to ask the question, as main stream media seem unable to (or not permitted to).... every school shooting has been caused by kids on ADHD drugs, or Paxil or such, all just been put on. Read study329.org if you dont believe me, or do some google research (yes real research). None of the school shooters, or the one that went nuts in the theatre, or the church, were jihadists or extremests. Sorry, more Americans are shooting each other that are NOT extremeists. Look up the gun shooting records.

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    4. This is all extremely off topic, and any further related discussion will be deleted.

      I appreciate the warnings, but I will NOT allow this to devolve into a political discussion.

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    5. Doc, political discussion is education.

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    6. That is a very interesting opinion, Anon, one with which I vehemently disagree.

      As I said, this is not a political discussion blog. I've asked nicely once to take those conversations elsewhere. I'll not ask nicely again.

      Clear? Good.

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    7. People will soon boycott your blog.

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    8. By "people", do you mean "I"?

      Don't let the door hit you in the ass on your way out.

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    10. wait...what? You want a boycott of a blog --where it clearly states that off topic comments are not allowed--because the blogger (ie owner, proprietor, head person in charge) asked you to stop violating the rules and stay on topic?
      Go find JB and the two of you can start your own blog--which no one with a brain will read.

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    11. Again, an absence of logic. Boycotting has no social or economic impact on a blog. Those who wish to write will still write, and those who choose to read and respond will do the same. The fact that some may choose *not* to read doesn't impact either group.

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    12. sure it does, it reduces the clutter in the comments section to not have the petty sniping.

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    13. Ken, I stand corrected! :)

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  10. I've had a patient try to tell me what suture to use in the OR. Seriously?

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    2. What suture did she recommend, because it seems you werent listening.
      If you were stitching me up, I would not expect you to be offended, because I suggested what suture to use. I think this is what people are trying to say, doctors have this arrogance attitude, and dont listen.

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    3. either that or ER WAS listening and the patient's "suggestion" was ill-advised.

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    4. Angela - I know exactly what suture to use in exactly what situation. It took me years of experience to learn that, and it isn't arrogance to tell you so. If you don't have that experience, then it is YOUR arrogance telling me how to do my job properly.

      Now that's more than enough of your anti-doctor ranting. If you have more raving to do, get your own blog and rant away. You will not use mine as your own personal doctor-bashing board.

      I trust we have an understanding now.

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    5. Angela, can you tell me the difference between vicryl and monocryl? The difference between 0 and 4-0? The difference methods of suture dissolution? Until you can and until you know why I use different sutures for different applications, I will ignore your recs.

      I don't tell my carpenter father which nail for which job. Same basic idea, my experience lets me know what works well in different situations.

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  12. I'm reading experiences of women who were or still are harmed with Essure permanent birth control. Most of them are saying that their doctors both pcp and gyno are denying that Essure has any side effects and that all their symptoms are in their head. After a patient finally has Essure removed (usually this involves hysterectomy with bilateral salpingectomy) and most if not all her numerous symptoms (month long very heavy period with clots the size of orange, anemia, bloating aka e-belly, weight gain, vitamin D deficiency, to name just few) resolve after surgery, that is when the pcp/ gynos start believing patients. For more info google Essure problems page or their Facebook group (closed group) Essure problems.

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  13. I'm not very good at boycotting things I enjoy, so I won't be leaving this blog behind.

    I use the websites Doc listed for information. I want to know what side effects to expect from my prescriptions. I look up whatever diagnosis I get to see what to expect as far as treatment and prognosis. I try to stay informed regarding my own health. I find it easier to cope.

    My doctors know more than I do, they also have access to more information than I do. My pharmacist knows far more about drugs than I will ever know. Some of the websites that come up in a google search are nothing but woo.

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    1. My thoughts are getting more and more disjointed. I am finding it harder and harder to remember words, and to get the words I do remember to come out of my mouth. Sometimes, I feel like my tongue is glued to the roof of my mouth.

      My online research says that memory problems are a side effect of the gabapentin that I take. When I go pick up my meds, I will be asking the pharmacist about it. Then I will discuss it with my doctor at my next appointment. That is how I use online research, as a starting point for what to ask and who to ask.

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    2. the name of the condition is aphasia. hopefully it is just a side effect of the medication, but it can be a symptom of ongoing trouble. definitely worth asking a knowledgeable professional about.

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    3. Thank you, Ken. I kept thinking ataxia, but I knew that wasn't it. I hope it is just a side effect. With my wonky immune system, though, it needs to be evaluated by the doctor.

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    4. Anomic aphasia is the correct term.

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  14. For some tangentially related comic relief, see the YouTube video "Homeopathic A&E". It is brilliant.

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  16. One suggestion for doing research on your own: Don't cling to the theory you've developed through your online reading and refuse to consider alternatives.

    Last fall my Mom started to experience numbness from her feet up, eventually reaching to her ribs. I was concerned that it might be Guillain Barre, since she had recently had a flu shot, and that can apparently precipitate the condition.

    The ER doctors listened, and did a spinal tap, but the spinal tap didn't support the GB diagnosis. At this point I didn't throw a tantrum, insisting that I was right.

    Cat scans or MRI showed an impingement on the cervical spinal cord, which turned out to be the cause.

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    1. Jonathan, both you and Mom are a good example of what being involved and informed *should* be. You expressed a concern, doctors tested for the condition you mentioned, and ruled it out, then went on to find the actual source of the problem so it could be properly addressed. Whatever the final choice for treatment turned out to be (surgical or physical therapy/naprapathy/chiropractic), you moved on to seek that treatment, instead of further delaying Mom's recovery by trying to doctor-shop for someone who would agree with you.

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    2. I would like to point out that there are times when a doctor or even several doctors dismiss the concerns brought to them, leading to misdiagnoses and improper prescriptions and more. It's more of a common thing in the invisible/chronic illness department, it seems, because there is so much overlap in symptoms and comorbidities and so many things are clinical diagnosis rather than being immediately testable, and so on. I would like to point out that I agree that doctor shopping for someone to agree to a pet theory is probably going to hinder more than help, but there are times when it is necessary to seek second or third opinions.

      I was misdiagnosed with fibromyalgia for years, and found myself close to a total body shut down before I found a set of doctors that believed me when I said "it's NOT fibromyalgia but something else and I think it's _______ for these reasons, can we check this out?" One grueling year after a proper partial diagnosis from that experience and I'm receiving treatment that falls in line with my actual problems and doing well.

      TL;DR: Yes, I agree, but I also must say that there are times when you have to push forward and search for the right medical professional(s) to fit your healthcare team. My rights as a patient validate finding another doctor if I must, and I'm very glad I did. That being said, I still follow the rule of "express concern, explore concern with doctor, find root of problem, yay!" and it's been a good, productive principle for me. Either way, you need a balanced perspective.

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  17. Just to add an anecdotal story to Doc's premise... I played (use of past tense - interesting!)tennis with a man in his late 50s. He had not been feeling well and at one match, I talked to (mildly confronted) him about his health. My suggestion was he should see a doctor perhaps tomorrow morning. He really looked that bad. He told me he took care of himself using Google and unless he decided he needed a prescription, he didn't plan to see a doctor. Turns out I was just the last in a long line of friends who had had this same conversation. Well, you know how this turns out - I attended his funeral less than a month later. He died of something preventable had he not bestowed a medical degree on himself. Sad, as he left three teenage children behind.

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    1. That's too often the sad consequence of "self-treating," whether via Google "research" or deciding that non-traditional, "natural" or homeopathic treatments are best without proper medical assessment or advice. Conditions that might have been treatable either remain untreated, or medical treatment is finally sought too late to make a positive impact on health.

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    2. My mother has gone to homeopathy "doctors" before for her health. I guess to their credit they put her on a healthy diet. She was doing well, until they did blood tests and found she was lacking the same vitamins they just happened to be selling that...you guessed it, their strict healthy diet was deliberately deficient in.

      The bottles were a couple hundred for a pack.

      She got off lucky in that she was just trying to get healthier, not cure a sickness. Homeopathy is about making money, not curing people.

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    3. I had contact with a person online who was an extreme case of that. the person subsisted on, from what information concerned people shared, rice, "reverse osmosis water" and about two cups a day of "Dr." Mercola's pills and oils. she was religiously convinced she was suffering from celiac and heavy metals poisoning, said she was undergoing chelations (it sounded like that was ongoing) and any other food harmed her stomach. the last update I got was that she had collapsed in her home, and been hospitalized. her chief complaint in the hospital was that they wouldn't let her have her supplements, and (our interpretation) the result was that in two days she had recovered enough to self-discharge and go back home to resume her self-medicating habits.

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    4. edit: she was also religiously convinced that every other person in the world is suffering from celiac; even if they are completely asymptomatic and any celiac specific testing is 100% negative.

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    5. I sometimes have to wonder if lots of this recent self-diagnosing of celiac disease is happening because so many food manufacturers, and even restaurants, are now promoting "gluten-free" products as "healthier." Of course...they're "healthier" for those who truly are gluten-intolerant. But then people read a *bit* of information about gluten intolerance and *some* of the symptoms of celiac disease. Then they reflect on the fact that they occasionally have diarrhea or constipation, heartburn, gas, headaches, or whatever, and figure, "AHA! I must have celiac disease!" So they begin self-treating, by avoiding foods that actually weren't causing them any harm anyhow, and provided useful nutrients, and taking unnecessary supplements because they *think* the digestive system isn't properly absorbing nutrients. As we know, even some supplements can be very harmful if used in excess.

      To a lesser extent, the same misconceptions exist about chelation. In recent years, we've heard and read a lot about "heavy metals poisoning," especially in regards to vaccines. So, some people think that exposure to even the most minute levels of aluminum, mercury, lead, or whatever has had a major negative impact on their bodies, and look to chelation therapy as a way to "detoxify." Unless a person has been medically diagnosed with actual heavy metal *poisoning,* which typically happens only as a result of either long-term environmental exposure to toxic metals, or a major accidental ingestion, chelation therapy isn't needed, and the risks are substantial. But people continue to want it, to treat everything from arthritis to heart disease to ASDs in their children, even though it's been proven to have no medical benefits for these conditions.

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    7. it's their newest way of feeling special.

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    8. Yeah, I guess that makes them feel like they're doing *something* proactive about their own health, and it gives them something to talk to/lecture *others* about.

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  18. I have had both good and bad experiences with doctors. I suppose my bad experiences come from having some rarer medical conditions, and that doctors tend to go by the rule "when you hear hoof beats think horses, not zebras."
    Getting me finally diagnosed with Ehlers-Danlos Syndrome was a long and difficult process for my mom. It started when I was three, when my mom complained of my excessive clumsiness to the doctor. After a very basic eye test, I started to walk back to the exam room, and tripped over nothing, doing a face plant. I remember my mom saying "see? That's what I'm talking about. Why does she keep doing that?" Several years, many paediatric experts, and three different tests for epilepsy later, still no real answers. Some experts seemed quite concerned with my easy bruising, one even asking if my father was a haemophiliac. Others found my excessive flexibility to be the real concern, but had no answers for it. It was finally a new GP when I was 15 who made the breakthrough. She had other patients with the same condition, and put it all together. But the first person she sent us to for the proper diagnosis didn't seem to have a clue. She had print outs from a website, and said because I didn't have all the symptoms from all the types, I couldn't have Ehlers-Danlos Syndrome (I specifically have the hyper mobility type). My diagnosis was confirmed by a genetic disorder expert a few months later.
    The next issue that caused conflict with medical professionals for me was endometriosis. The problems first started when I was 17, I'd recently moved and started with a new doctor. I talked to her about my increasingly heavy and painful periods, and so started my misadventures with just about every birth control pill on the market at the time. None of them solved the problems I was experiencing, and I was either having two periods a month with them, or even bleeding for three weeks straight (but never on the week I was supposed to bleed.) Finally she wanted to put me on the shot, but I wasn't going to risk never knowing when bleeding would start and when or if it would stop. I asked to see a gynaecologist, but she told me she wouldn't refer me. That I was just being a wimp and that it was all in my head. She said I just needed to get over myself. I felt humiliated and defeated. I changed doctors, but didn't bring up my issues for a few years. During one particularly bad period, I went to my new doctor and talked to her about what was going on. She was horrified about my symptoms, and sent a referral for me to see a gynaecologist asap. She also did her best to find me some pain medication that worked. The gynaecologist was also wonderful, and finally diagnosed me after exploratory surgery. The spots of endometriosis that were found were cauterised and I haven't had problems since.
    I've seen both good and bad in doctors, but I still have respect for the years of school it took to get the title. But I also like to take the time to look on proper medical sites now, just to get an idea of what doctors might look for if I have something other than a cold.

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    1. I have a friend who has a one-in-a-thousand condition; and his doctor has essentially given up on ever finding it when the friend's spouse happened to see a TV documentary on the condition and its rarity. they essentially had to persuade the doctor they wouldn't blame him for the test if the specific test for the problem was negative (it was a rather expensive test) but it did return positive and they were able to establish effective treatments.

      the shocker was at a follow-up about a year later - and the doctor said that thanks to their persistence, he had been able to diagnose and help three other patients with the same problem.

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    2. Ken, that's an awesome story. I bet those three patients were so very relieved to have an answer at last!!

      Nicole, What up, fellow zebra?! Classic type here, with JHS on the side, plus some other fun stuff. Now that I'm older and know more about EDS, I can look back and make sense of SO MANY THINGS growing up, including the clumsiness! Years before I even heard of EDS I had a chiropractor tell me that I had "diminished proprioception", which is the term I've stuck with since then, but basically a fancy term for clumsy.

      About 2012 the full body pain started, and I started looking for answers and ways to treat the pain. Spent a few years with fibromyalgia as my working diagnosis and had a couple doctors almost kill me, especially with the gabapentin and the "opioid hyperalgesia" that I supposedly had so my pain meds got taken away. I stumbled across a good pain management doctor for my pain, which I now know is Intractable, not just chronic. A chunk of a year later and I was looking for specialists who knew EDS, because I already knew I had it, thanks to the research and other EDS patients I'd run across. Now I have a geneticist who is the best person in the world to handle that aspect, and I'm so happy I didn't settle and let myself believe that it was "just" fibromyalgia, or worse, all in my head. Psychosomatic is a word that is too often used as a weapon against patients.

      I agree with your last paragraph intensely. I respect the degree and the effort it took to get there. However, I spent too much time being dismissed or marginalized, and I now know the importance of finding the right doctors for my team that I can work well with. The world is a big place, and I don't expect everyone in it to like me.

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  19. Doc,

    There are a few absolute in life: taxes, death, my absolute infintely deep hate for twitter and facebook. Oh, and stupidity which is competing in infinity with my hate for twitter and facebook.

    Everything else's relative ;)

    Al

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