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Comment by IAmGraydon | Hacker News Reader

I don’t understand why it took so long for him to get this diagnosis. Elevated adrenaline levels are easily tested for in a simple catecholamine blood test. That test is among the basic panel done when one sees an endocrinologist. It may not have pinpointed his adrenal medulla as the problem, but it should have pointed them in that general direction very early on.

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Because doctors in the western medicine tradition don't always accept a patient's symptoms at face value.

The person in the story got referred to psychiatry because medicine didn't believe him.

Similarily, many legit medical disorders are discounted as not real symptoms by western medicine until decades later, for example, lyme disease, which is caused by a real organism with a real transmission pathway (ticks), with repeatable symptoms, but was discounted for years as "patients just making things up".

I’ve got a relevant experience to back this up.

I had a urinary tract infection that I felt progress up to my bladder and eventually into one kidney and then the next. I would’ve liked to visit a doctor immediately, but with American medical costs being what they are and hospitals advising me to hold out a few more days until a doctor in my insurance network was available, I’d hoped that small stinging pain down there would go away. But nope, it spread to all the regions mentioned plus I was passing blood almost nonstop. I couldn’t sleep, could barely walk, and felt like I was on the verge of dying.

I made it to a doctor once I knew it was a life or death situation, described my symptoms and the progression, and the guy starts digging into me, trying to say I’m just fishing for antibiotics (what?) and it’s clearly a kidney stone. I all but called him a dumbass, because it wouldn’t make sense for a kidney stone to move backwards up to both of my kidneys. I had to wait around for a urine test to prove that yes, it was in fact an obvious kidney infection, but the doctor was still skeptical asserting that it’s probably just a mild kidney stone, and reluctantly gave my antibiotics that cleared it up instantly.

That wasn’t the first time a doctor tried to argue against my obvious problem (I also had one argue that I didn’t break a clearly broken bone), but it was the most frustrating experience.

My experience mirrors yours. I have quite a few lousy experiences with doctors across the world. But the one I am narrating below was particularly scary and I might have gotten into serious health issues because of sheer incomptence of an entire hospital.

Some years back in London I fell ill with constant high fever. Following the protocol, I took paracetamol for 5 days but my condition worsened.

So I checked into the hospital. It is considered a decent NHS hospital. They promptly took blood samples and put me in isolation suspecting some infection. But despite being reporting that paracetamol is not helping they kept giving out to me religiously for 10 more days. Everyday they would collect blood samples and assure me that they are going to find the root cause and then start the proper medication.

After 15 days of constant 40C fever, they still don't wanted to treat me. On 16 day, barely conscious almost naked in ill fitting hospital gown I walked out of my room and screamed and probably abused the staff and collapsed on the floor.

Then only they have me broad spectrum antibiotics and in next few days I was back home.

At that time I researched that it is common protocol to administer broad spectrum Antibiotic if diagnosis is non conclusive.

I still wonder what would have hapenned if I hadn't taken it to the floor on 16th day.

That sounds weird. If he really thought kidney stones then why not order an ultrasound? Also why not go to the ER? Your insurance has to cover it.. I guess it would depend on your coinsurance/copay though..

Not necessarily. If it turns out it wasn't an emergency after all (just appeared to be), or if the insurance company decides that the remedy wasn't medically necessary (but the doctor treating you at the ER did), some states allow insurance companies to deny claims. They are slowly trying to unravel all of the protections created by the ACA, and they are succeeding.

https://www.vox.com/policy-and-politics/2018/1/29/16906558/a...

>His company uses Anthem, one of the country’s largest health insurance plans. In recent years, Anthem has begun denying coverage for emergency room visits that it deems “inappropriate” because they aren’t, in the insurance plan’s view, true emergencies.

>The problem: These denials are made after patients visit the ER, sometimes based on the diagnosis after seeing a doctor, not on the symptoms that sent them, like in Cloyd’s case.

Some doctors are idiots. No different than people in any other profession.

Some doctors are idiots. Some doctors are only in it for the money. Only a small proportion of the people who qualify have any genuine deep-seated urge to help fix human suffering.

When doctors get it wrong, people die. Anyone who genuinely does care about human suffering is going to find that difficult.

But a lot of patients are idiots too. For every educated more-or-less self-aware middle class professional a doctor sees, there are tens of patients who are old, confused, angry, hostile, lonely, unable to look after their own welfare in more or less obvious ways, or just plain dumb - and barely able to understand what their problem is, never mind explain it.

So it's not an easy profession - not because doctors have to be unusually competent to do it, but because they deal with all kinds of people with all kinds of problems in all kinds of situations, and it's normal for many of those people to be very bad at being able to explain why they're there.

This. Essentially doctors go through 12+ years to work retail. Many people get an education just so they don't have to work with retail customers.

Also, it has gotten worse. Before the ACA there used to be a barrier where to see a doctor you essentially either had a job or money which would weed out a lot of the nuts.

And if you don't have a job or money (a "nut", as you say), you deserve to... die?

Incredibly offensive and shameful comment. Tell me more about the barriers you want to erect between people and health care.

I've found that the older they are, the listen they're willing to listen and discuss rather than tell.

You could have gone to an urgent care for less than 300 dollars cash, even when I had no insurance, this is what I would do when I had this same kind of thing happen

Yeah, the Lyme disease story checks out. My aunt had a mysterious disorder that left her in constant pain for years. She lived in Canada. Then, during one of her visits to us in the Netherlands, one of my uncles (her oldest brother, a neurosurgeon) suggested that her symptoms were very similar to Lyme disease. Even knowing the likely cause of the disease, the first two doctors she visited flat-out refused to have her tested for it and told her that she was just being hysterical.

Note: she was a head nurse and the textbook definition of "walk it off".

You can't treat lyme disease years after the initial infection. So they really only test if you see the bulls eye rash and prescribed antibiotics. I think they might just prescribe the antibiotics if they see the rash. The knee swelling and pain comes much later. So what the doctors said was in fact correct.

https://www.mayoclinic.org/diseases-conditions/lyme-disease/...

This is incorrect and based on outdated research. The research that shows persistent Lyme is real is piling up but the medical community seems slow to accept this fact.

Citation? The CDC and NIH disagree with you.

https://www.cdc.gov/lyme/postlds/index.html

They are wrong and are severely mismanaging Lyme. For example, the blood test endorsed by the CDC shows a 53 % sensitivity yet they claim testing is adequate. In reality, it's not much better than flipping a coin. They also claim there is no persisent Lyme. Here are two recent studies that contradict what they are saying. And that's just the tip of the iceberg.

The Emerging Role of Microbial Biofilm in Lyme Neuroborreliosis[1]: "The early treatment with oral antimicrobials is effective in the majority of patients with LNB. Nevertheless, persistent forms of LNB are relatively common, despite targeted antibiotic therapy. It has been observed that the antibiotic resistance and the reoccurrence of Lyme disease are associated with biofilm-like aggregates in B. burgdorferi, B. afzelii, and B. garinii, both in vitro and in vivo, allowing Borrelia spp. to resist to adverse environmental conditions. Indeed, the increased tolerance to antibiotics described in the persisting forms of Borrelia spp., is strongly reminiscent of biofilm growing bacteria, suggesting a possible role of biofilm aggregates in the development of the different manifestations of Lyme disease including LNB."

Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease[2]: "Using multiple corroborative detection methods, we showed that patients with persistent Lyme disease symptoms may have ongoing spirochetal infection despite antibiotic treatment, similar to findings in non-human primates. The optimal treatment for persistent Borrelia infection remains to be determined."

If you want to know more, here's a thorough critique of the current Lyme policies.[3]

[1]https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287027/ [2]https://www.ncbi.nlm.nih.gov/pubmed/29662016 [3]https://waset.org/Publications/obstruction-to-treatments-mee...

I don’t think your citations are sufficient evidence to discredit the CDC and NIH at this time.

The National Guideline Clearinghouse (NGC) is a federal agency of the United States Department of Health and Human Services responsible for providing the most up-to-date clinical guidelines to physicians. The NGC also removes clinical guidelines that are no longer relevant, that do not meet the Institute of Medicine’s standards for clinical practice guidelines, including a systematic review of the evidence, or that have not been revised in the past five years.

In January 2016, the NGC removed the Infectious Diseases Society of America (IDSA) guidelines on Lyme disease for these reasons. In a scathing report on the standard of clinical guidelines in North America, the Institute of Medicine specifically referenced the IDSA guidelines on Lyme disease as a prime example of what not to do. Now, the only evidence-based, peer-reviewed guidelines on Lyme disease that conform to (and exceed) the Institute of Medicine’s clinical guideline standards and are available on the NGC website, are the International Lyme and Associated Diseases Society guidelines for Lyme disease (ILADS). ILADS guidelines recognize persistent Lyme and have cured thousands of patients.

Meanwhile, the CDC is still promoting the ISDA guidelines that deny the evidence of persistent Lyme Disease. The CDC claims that these 2006 guidelines represent the "best science" and "the best synthesis of the available evidence". They do not provide the reference or criteria to substantiate this claim. And they are ignoring over 700 peer-reviewed articles that support the persistent Lyme theory.[1]

[1]https://www.ilads.org/wp-content/uploads/2018/07/CLDList-ILA...

You should probably cite articles that you copy from:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4938692/

Also, the reason the guidelines were removed from the NGC is that they hadn't been revised in 5 years.

https://lymediseaseassociation.org/news/official-word-on-ids...

And the new draft guidelines from the Infectious Diseases Society of America doesn't appear to agree with your position either.

https://www.idsociety.org/practice-guideline/Lyme-Disease-Gu...

The question is why has the CDC been pushing outdated guidelines? Why are they pushing guidelines that ignore a boatload of research? The answer is: Conflict of interest and dogma. See my third link in my earlier reply.

Regarding the new guidelines, there are significant admissions:

-The limitations of antibody testing (page 10, line 234), and that a patient can be seronegative

-Lyme arthritis only occurs in a minority of 30% (49:1147)

-Patients should be retreated if 28 days of doxy does not resolve arthritis (55:1280), ultimately with up to 1 month of Rocephin/ceftriaxone

-Animal studies may demonstrate persistence in avascular areas (56:1311)

-They infer that evidence of a persistent infection or treatment failure can be concluded through objective signs of arthritis, meningitis, or neuropathy (62:1429)

-Studies of the chronic Lyme population are recommended, and they claim (without citation) that these patients often have no clinical or lab evidence of infection (64:1493)

-Babesia coinfects 2-40% of patients in endemic areas (67:1551)

When viable spirochetes were found after antibiotic treatment, one of the leading IDSA researchers response was "So what? You'd have to prove they are causing disease". Apparently germ theory is now in question when it comes to Lyme disease, and only Lyme disease. For every other infection, if the pathogen is found, you have the disease. Not with Lyme though. It's pure dogma at this point.

What about what?

Both this article and the mayo clinic one say that post Lyme disease syndrome is real and without a cure. So if she did have PLDS and the commenter is correct and that the doctors simply called her "hysterical" and left it at that then it cannot be said that they were correct.

Just watch a season of Mystery Diagnosis to lose faith in doctors, or at least begin to understand they don't have all the answers.

It's story after story about people asking for help, doctors telling them to "Just go home and wait a while and see what happens," until the person figures out the problem themselves and struggles to find a doctor that believes them.

Why are you using the word "western" here?

Are non-"western" healthcare practitioners exempt from biases and prejudicial opinions?

I think it's fair to say that, like all humans, healthcare practitioners may have prejudicial opinions on healthcare matters that can lead to erroneous diagnoses. The western ones don't have a monopoly on this behavior.

Because this has to do with western medicine as a discipline and practice, in which we over-objectivized health care and the doctor/patient relationship is heavily asymetric. This leads to the fact that in most cases, doctors do not really listen to their patients, let alone believe them when they don't manage to find objective cues of a illness.

They easily discard patients' subjective experience. Recent research is calling for a change in that aspect, and change is slowly happening.

Personal anecdote, but I’ve been tested for elevated adrenaline on 2 occasions just from complaining of facial flushing. Sometimes this will even be tested in a yearly physical. Surely, over a decade of interacting with doctors would have led him to this common test.

Where do they do yearly physicals? You must not have hmo coverage.

My HMO, Kaiser Permanente, does free or cheap annual physicals. In fact they will beg/harass you to take them. I'm assuming they have data showing 15 minutes once a year saved them big money when they can catch expensive issues early.

Well I guess it depends on what you call an annual physical. Check vitals + simple blood test may be cost effective. Generally the evidence is against the benefits of annual physicals and any cost conscious hmo knows that.

Edit: here’s more on the subject https://www.health.harvard.edu/blog/a-checkup-for-the-checku...

That's essentially what their physical is. Now I'm thinking a "real" physical might involve more diagnostics?

Edit: A scan of the internet seems to show most physicals are checking vitals, blood tests, and some lifestyle questions... unless you're old or have an existing health complication in which they check more stuff.

Also I'm vegetarian so I like to check iron, creatine and B-12 levels. And I like to take the opportunity for a free STD check.

Where don’t they in the developed world? I’m confused by your comment.

It depends on the culture...I think medical culture differs from place to place. When I was in the northeast, everyone had the ambition of being the next Michael DeBakey or chief of Harvard Medical School, so we'd all run every single test under the sun. The patient'd get a huge bill later from the lab because the insurance didn't want to pay, but what the hey, we were all medical residents and didn't have to deal with the fallout (the primary cares probably did and were pissed).

Out here in the west...people will roll in with some obvious diagnosis and some overworked urgent care doc seeing 60 patients a day wouldn't have bothered to ordered even the most basic tests....

For my money it was just an ordinary cock up.

Did he ever actually have a test done to confirm this? The article doesn't mention it.

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