Bedridden for 11 years, he discovered a surgery for his adrenal condition
www-m.cnn.comWow. I actually have a lot in common with this dude. I have a very rare disease that causes autoimmune autonomic failure, which was initially blamed as "diabetes complications", due to type 1 diabetes.
I was always suspicious it was something else, as it started when I was diagnosed with type 1 diabetes at age 5. I was constantly scavenging the medical literature when I was in college.
At age 22, it got out of control and I was in and out of the hospital. I came across a journal article and I realized that there was nothing about this disease that could eliminate it as a possibility. I knew I was screwed.
My blood was sent to the only lab in the US that tests for it. It came back positive.
Now, in the past year, at age 30, after trying about 10 treatments, including in combinations, I am finally in remission.
I am back in school finishing my electrical engineering degree. I am a senior undergrad. I have a new lease on life. I never thought I would be doing this well!
EDIT: My diagnosis story is here. But, I was not doing as well as I am doing now, when I posted it: https://rareandextraordinarycom.wordpress.com/2016/05/14/fir...
That's quite inspiring. Do you mind connecting via email? (Not a media request; just to learn and exchange some ideas)
Sure. Since I cannot PM you, I will use a more private address: secretsquirrel89@protonmail.com
With immune therapy, did that help with your type 1 diabetes at all?
No. My body produces virtually no insulin. A C-Peptide test was performed in the past 10 years, when I was receiving immunomodulatory treatment, and showed no traceable C-Peptide in my body. Hence, my body is either producing none to extremely low levels of insulin.
By the time you are diagnosed with type 1 diabetes, around 90% or so of the islet cells (insulin producing cells) are eradicated, supposedly.
Sorry to hear that. I was hoping for you that the new therapy you were receiving gave your pancreas time to heal too.
Thank you. It's OK. I have lived a good life with T1D and it's been the only life I've really known (diagnosed at age 5). There are people who do well with it, long term. I just am just trying to roll with all of this and not look back :-).
appreciate your positive outlook and best wishes.
From someone rolling with a crippling disability.
Thank you so much! Same to you, my friend! :-)
Related: A great article on HN member mattmight a few days ago. Matt's a brilliant computer scientist and teacher who was inspired by his son's condition to switch careers and investigate rare diseases full-time.
https://www.statnews.com/2019/07/25/ai-expert-writing-code-s...
Github link: https://github.com/webyrd/mediKanren
> Lindsay suspected his body was producing too much adrenaline. He knew of a drug called Levophed, which is approved by the US Food and Drug Administration to raise blood pressure in some critically ill patients. Levophed is basically an injection of noradrenaline, which counters the symptoms created by excess adrenaline.
This is incorrect. norADRENALINE is a more specific version of ADRENALINE made in different parts of the body (and which also acts as a neurotransmitter). outside of nerves, noradrenaline acts on alpha receptors which among other things constrict blood vessels to raise blood pressure (it is used for this in critically ill patients). adrenaline acts on the same alpha receptors, but also targets beta-receptors which have the effect of speeding up and increasing the strength of contractions in the heart (also used in critically ill patients with low blood pressures and whose hearts aren't pumping enough). Epinephrine is another word for adrenaline.
> As Lindsay delved into more medical literature, he found only 32 recorded cases of bilateral adrenal medullary hyperplasia.
I don't have numbers to counter this off the top of my head, but congenital adrenal hyperplasia is a rare syndrome, but still common enough that it is taught to every medical student and tested on our boards repeatedly.
obviously, im somewhat skeptical, but i guess that plays into his hands since I'm part of the 'establishment'. Hard to know without more medical details, which are glaringly missing from any stories I can find about him...
From a patient perspective, it's pretty believable. They don't know what's wrong after the typical battery of tests, so it's incurable or you're making it up.
I've also had an experience where I basically told the doctor
>I am tired all the time, I sleep 12-16 hours a day and still wake up feeling completely unrested, and it seriously affects my ability to do my school work and live my life
and his response was (to paraphrase)
>you just need exercise, fatty
For context, I was in my late teens at this point, and a few pounds overweight by the medical definition.
Long story short, after many expensive visits with psychiatrists, we learn that anti-depressants didn't help because I wasn't depressed.
I finally did a sleep study, and it was sleep apnea. A sleep disorder.
This sounds ridiculous, right? As an outsider looking in, it's so obvious. But this actually happened to me, and I am sure it happens to thousands of patients all of the time.
Isn't sleep apnea more common in overweight people?
It is. A Doctor suggested I lose some weight (only about 10kg or 10% of my weight, which I shouldn't have had) before proceeding with any other treatments. This was after a sleep study where I had some interruption but not quite to the point of diagnosing sleep apnea.
If ~every doctor is familiar with his condition, and there are no problems with the medical establishment that contributed to this situation, how did it come about that he was never treated for it, and he had to (allegedly) propose a new surgery in order to treat it? And the whole process took over a decade? And doctors (allegedly) now voluntarily consult with him on obscure cases?
> I don't have numbers to counter this off the top of my head, but congenital adrenal hyperplasia is a rare syndrome, but still common enough that it is taught to every medical student and tested on our boards repeatedly.
You are confusing Congenital adrenal hyperplasia (ie 21 alpha hydroxylase deficiency), the bane of every 3rd year med student and adrenal medullary hyperplasia, a much rarer condition (I don’t recall it ever coming up during medical school).
Congenital Adrenal hyperplasia involves the cortex where the corticosteroids are produced. Epinephrine and norepinephrine are catecholamines produced by the medulla. AMH is more similar to pheochromocytoma though.
I went through an annoyance with my vision. I ended up having two separate conditions (well a total of 5 things were wrong with my eyes, but two acive major ones and two that will eventually cause more surgery later but aren't a big deal yet and one that was minor), but because the first one seemed like it was causing the problems, it took me almost a year to find and get real treatment for my issues so I could be able to see properly again. It was really depressing as my vision just kept getting worse and eye doctors were not helping. Right before my surgery my eyes got to the point I couldn't legally drive (bear in mind that I was under 40 at this point) even with glasses.
I just kept trying different doctors until an intern assistant to one of them saw the actual issue and got me referred to an awesome specialist who confirmed the diagnosis (and found the other problems I had not known about yet) and got me to a surgeon who did surgery to fix it. As a result of this, I strongly distrust doctors and I think they can sense that when I see them.
For those more curious, I had Idiopathic Intracranial Hypertension as I am rather large. Due to being large and doctors being able to see that problem, they just assumed it was the issue and they never looked at anything else. They put me on NASTY drugs to fix the issue, but my eye sight just kept getting worse. I have no idea why it took an intern to see the problem, but in the end I had ABMD (also known as Map-Dot-Fingerprint Dystrophy). I believe a total of 6 eye doctors and two neurologists completely missed it. I really should have gotten the intern's name and properly thanked him, as who knows how much longer I would have had to go without a diagnosis. IIH can cause blindness, as it will slowly destroy your vision (or in some cases quickly), so I kinda understand why they may not have seen it, but from what I have read, it sounds like ABMD is pretty easy to see if you look for it, and none of the real doctors did.
So I hope no one out there ever has multiple problems causing similar symptoms, because doctors can't be bothered to think about that possibility, at least eye doctors.
If it’s rare then most doctors probably ignored it for that very reason. The intern, not “knowing better,” likely thought about it as they recently learned about it.
Why distrust doctors when it was a doctor (in training) that discovered it, and it took other doctors to treat it?
Uncommon things are a blind spot for most medicine, just like they are in other fields as well. For example, in CS rarely do we ever expect a compiler or OS or libc bug, but they do happen.
If one or two doctors missed it, I would be ok, but basically everyone I saw ignored it. My neurologist thought something else might be causing it and sent me somewhere else to get it looked at. That was about half way through the process, so the doctors were being told that someone thought something else was going on and they still missed something rather easy to see.
I have had other issues where doctors thought I was lying to them, although no others that ended up with any serious consequences, just having to go see someone else.
I also had a doctor recommend dangerous surgery for a condition I ended up not having. Which, yes, getting a second opinion is good, but had I not done that, I would have had major surgery on my head that has a roughly 10% chance to deafen you for life.
I have the misfortune of having multiple rare issues (on more than just my eyes) and as a result, dealing with western medicine sucks.
My father has similar issues, so I have seen it with him too. For example, doctors let his appendix explode inside of him after he went into ER twice complaining of extreme pain in his abdomen. It exploded a few hours into the second visit and he almost died.
Mind sharing what these misdiagnosed symptoms were that you had?
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.
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.
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.
Wow... Just wow. My girlfriend is a internal medicine specialist student and she was blown away. As she read she basically went through a ll possible explanations that the other doctors had. However she actually knew about this condition, it is extremely rare but not unheard of. Possibly because of cases like this she learned about them, but she said she would never connect that to something looking so neural, it is expected for it to induce cardiological issues.
I wonder if organizations with a living founder who has a specific disease are more effective at investing for cures.
Michael J Fox helps cures Parkinson’s:
Augie Nieto with ALS:
Reminded me of this comment I encountered on HN [1]. Leo Szilard invented his own Cobalt 60 treatment and cured himself [2]
[1] https://news.ycombinator.com/item?id=11334660 [2] https://en.wikipedia.org/wiki/Leo_Szilard#Cancer_diagnosis_a...
Cure himself and discover a new cancer treatment? Wow
Well, We're talking about Léo "I built the first nuclear reactor with Enrico Fermi" Szilárd here... :)
If anyone else reading this thread has ever felt, or is currently feeling, utterly dog shit, it could just be stress.
I had kidney pain, chest pain, migraines, felt sick constantly, fatigued... I look after myself. I run, rock climb, eat ok, not overweight. The doctor was very worried, gave me anti-sickness tablets as a first thought, ordered every single test imaginable.
It was just stress, I didn’t think work was doing that to me.
Had some conversations with HR, top management listened, unrealistic dates shifted. I got better almost overnight.
I’ve read a number of comments here that possibly could be the same, so I hope this helps somebody.
In it, he found an important passage discussing how adrenal disorders could mirror thyroid disorders.
A former RN told me that adrenal and thyroid issues are interrelated. That was useful information for me.
I'm a bit surprised and taken aback that the article kind of implies that many medical practitioners aren't aware that thyroid and adrenal issues can be similar or connected.
Just wow.
It's interesting to see the parallels between his story and the story of others who became entrepreneurs. I see so many stories of entrepreneurs finding a problem with their life or in the world and then fixing it. This guy took it to the extreme and managed to fix a medical alignment within himself all while bedridden.
Love to hear anyone more people who invented a cure for their own illness
So, is it related to adrenal fatigue which is not yet fully recognized AFAIK ? Would it help ?
In some cases this could be a diagnosable and treatable cause of the kind of illness that often gets described as "adrenal fatigue".
I have some experience with this topic, having spent at least 13 years in that category of people who is ill in a way that mainstream medicine can't really diagnose or treat - and in a way that has parallels with the symptoms described in this article (though not nearly as severe or debilitating).
The idea of "adrenal fatigue" and "adrenal insufficiency" has come up a lot in the self-directed research I've done, but only among complementary/alternative practitioners like naturopaths and chiropractors.
It's not really a medical way of thinking about things - i.e., "your adrenal glands must be tired because you've been too busy/stressed". It's not something you can test for or address with medical treatment - which is why people who go down that path end up undertaking 'holistic' treatment approaches like diet, supplements, exercise, emotion-based therapies, etc, with varying degrees of success.
But there are plenty of people I've come across, particularly in communities of people who diagnosed with, or presumed as having "Chronic Fatigue Syndrome", who suffer without any improvement for many years despite trying every conceivable remedy, whose condition may well be explained by what is described in this article, or by something comparably obscure, relating to the adrenals or other parts of the autonomic nervous system.
I’m curious what sort of stresses are thought to cause adrenal issues. Can they be environmental/situational vs. chronic hereditary?
About 5 years ago I was fairly healthy, eating great and CrossFit 6 days a week. Then my body started to become tired all the time. I had pretty high work stress at the time along with what might be considered frequent physically stressful workouts. I suddenly found myself sleeping most of my Saturday and Sundays. Struggling during the week, just enough energy to get myself to work and back to crash at night. Eventually dropping exercise altogether. Along the way I started feeling weak, shaky and would have almost tremors in my body. I had read about adrenal stress at the time and suspected it might be an issue.
It’s hard to tell what’s related but I eventually developed prostatitis, a few rounds of cipro and no help. Then almost a year later some pretty severe digestive issues developed and they thought I had Crohn’s disease, then hospitalized due to reaction to medicine. Then kidney stones, gallstones, gallbladder removed. The last few years have been hard but so many people have it worse.
After the gallbladder removal I’ve finally starting to feel meaningfully better, digestive significantly better and prostatitis issues resolved.
I don’t work out like I used to, I’ve had times that I try to get into a running regime but eventually I start to feel sick and pain around my kidneys. I’m able to do extended hours of yard work and be outside for long hours. I’m lucky that my health appears to be coming back. I have no idea the ultimate root cause of all this but I’m counting my blessings.
When I read about stories like this, it’s inspiring and relatable. When doctors and specialists can’t figure it out they send you to someone else or suggest psychiatric issues. It’s disheartening and easy to lose faith in the medical system.
I'm chronically ill and had bad fatigue. I am a small, skinny woman with no muscle.
So, first time a doctor asked me if I did CrossFit, I thought it was a bit odd but didn't think too much about it. The third time a doctor asked "Do you do CrossFit?" I replied "Does it look like I do CrossFit?!" and she was like "Yeah, it does."
Apparently it's not uncommon where I live that there is some sort of vegan CrossFit disease, where the 80% of the treatment is is to stop being vegan and stop doing CrossFit.
Interesting, I was vegan for about a year before starting CrossFit. Was gluten free, alcohol free, dairy free and exercised frequently and felt basically the best of my life. After starting into CrossFit I added meat back into my diet which basically became paleo at that point. After about 10 months the fatigue started.
Vitamin B12 deficiency?
A year ago I was doing CrossFit 6 days a week. Then I started getting more and more tired. I developed ulcerative colitis and now I alternate between insomnia and sleeping 12 hours a day.
I think years of physical stress from crossfit triggered latent disease. I'm still trying to get my body working normally again.
Yoga and CBD are helping.
This is just a shot in the dark but check your vitamin d levels. I am just getting backup the level of activity that I was at after going through a similar situation where I went from running 20+ miles a week to not being able to walk a half mile. 3+ months of vitamin D for me started to move the needle in the right direction.
How did you go about testing and treating? Is this a thing a regular doctor can have tested? I have friends that swear by naturopaths and they usually say they start with lots of tests for vitamin levels.
> I was doing CrossFit 6 days a week.
Your muscles (and blood) rebuild on rest days.
So vigorous daily Crossfit would kill you. (see rhabdo)
Nobody, for example, runs a daily marathon, or even half-marathon.
Also, if you're OC enough to do that, you prolly have other issues too.
I’ve recently started a regime of CBD and have wondered if it’s helped my health. Of course, it could be placebo and totally unrelated.
> I’m curious what sort of stresses are thought to cause adrenal issues. Can they be environmental/situational vs. chronic hereditary?
“Adrenal fatigue” is an alternative medicine diagnosis. It’s a seductively simple narrative for people seeking answers to unexplained medical issues, but the theory is very much pseudoscience instead of actual science.
The biggest red flag for the adrenal fatigue theory is the claim that current blood tests are not sensitive enough to detect it. This is a common trick used by alt-medicine practitioners to dodge contrary evidence. We have medical tests to diagnose genuine adrenal insufficiency (Addison’s disease), but it’s an extremely rare disorder. Statistically speaking, you almost certainly do not have adrenal insufficiency.
The truth is that your adrenal glands are part of a larger system of feedback loops in your body. The adrenal glands don’t operate independently as the adrenal fatigue theorists would suggest, but rather they work in concert with your brain’s hypothalamus and pituitary in a feedback loop known as the HPA axis. Wikipedia can shed more light on the details of HPA axis functionality, but the key point is that the adrenal glands depend on inputs from your brain. That brings me to my main point:
> When doctors and specialists can’t figure it out they send you to someone else or suggest psychiatric issues.
Psychiatric issues can and frequently do manifest primarily as physical symptoms: Lack of energy, low stress tolerance, digestive issues, oversleeping or insomnia. These are hallmark symptoms of depressive disorders.
The fact that your symptoms started around the time of high stress at work combined with frequent, intense exercise is probably not a coincidence. It’s extremely common for people to notice the physical symptoms first and assume that their problem must be located outside of the brain. Your resistance to any psychiatric diagnosis is an extremely common response. Frequently, patients are offended by any suggestion that the origin of their problems is “all in their head” because it feels like a dismissal of their genuine physical symptoms.
However, the key thing to remember is that your brain and your body are not separate systems. They’re one in the same. It took me a long time to realize that drawing a line between mind and body is an artificial boundary that isn’t a helpful distinction when your problems almost certainly overlap both systems.
I think “adrenal fatigue” has become a popular alternative medicine diagnosis precisely because the adrenal glands are located outside of the brain. As I mentioned above, the adrenal glands take inputs from core brain structures. Your adrenals will only produce what the brain tells them to produce. Yet, no one wants to admit that their brain is right place to solve these issues, so they over-focus on the one part of the system that lies outside of the brain. Psychiatry and modern medicine has understood for decades that HPA axis abnormalities are intimately linked to depressive disorders, and that successful depression treatment in any form (therapy, medication, combination) normalizes HPA axis function. At this point, the hardest part is convincing patients to accept psychiatric treatment and give it appropriate time to work.
I’m glad to hear you’re feeling better, but I would encourage you to give your doctors a chance when they suggest psychiatric issues. You’re basically a textbook case of stress-related depressive symptomology. Modern psychiatry may not be perfect, but it’s better than years of unaddressed fatigue and suffering.
I've spent the last 15 years convincing my doctors, friends, and family that my physical symptoms are not just a manifestation from mental illness. It took me pushing myself to the point where I could no longer stand up. My legs felt like they were being ripped to pieces when I put weight on them.
I had attempted all the psychiatric treatments recommended to me. None of them ameliorated the physical symptoms.
Then I discovered what physical compounds my body was missing, and the physical symptoms AND mental symptoms resolved. So yes, the mind and body are not separate. They are constructed out of the exact same basic building blocks.
You should look at functional movement disorder, and catatonic depression. I'm not making any comment on your own situation, only on your comment that pushing yourself to the point where you couldn't stand up proves it wasn't psychiatric.
Typically people with ME/CFS/FMD get worse if they push themselves. The key to recovery is rest first and foremost. The symptoms of FMD seem to be a protection mechanism by the brain, and pushing through the symptoms just make it worse.
I won't. You don't know what you're talking about unless you have this illness and have a minimum of PhD level of understanding of biochemistry and enzymology.
I've cured myself. Who have you cured? No one I'm sure.
Yes I have had it, and am fully recovered now thanks.
Then perhaps we are talking about two separate illnesses.
Definitely not. You are just being closed minded, incredibly rude, and dont understand how the brain actually works.
Because I don't take kindly to people telling me that the excruciating pain, bone fractures from gentle use, and fascia disintegration I had was really just my brain amplifying pain signals for no reason.
I guess in your misplaced anger you completely missed my initial comment of "I'm not making any comment on your own situation". And nowhere did I comment on "bone fractures from gentle use", which has not been mentioned until now and is clearly not a functional symptom.
I apologize for an excessive amount of anger. But you were commenting on my situation. Saying you weren't does't change that.
But yes, pain is how your brain protects your body. Pain means you need to rest before your tissues literally rip to pieces from a structural failure.
No, pain isnt always due to structural or physical damage. That is what functional pain is. In many ways it is much worse than physical pain.
I do not think this hypothesis is correct. What evolutionary purpose would functional pain serve?
To me, it seems it's a theory to compensate for medical imaging technology that has far too low resolution. Doctors hate admitting that they don't know what's wrong, so instead they claim that the patient is crazy in politically correct terminology with an excessive number of syllables.
Structural tissue damage starts at a molecular level that cannot be seen by medical imaging technology. The fascia alone is too thin to be imaged at all, and so is completely ignored.
Biochemists have delineated in explicit detail how tissue breaks down at the molecular level. And they can reverse it. We need to start listening to them more.
There is pretty clear evidence from neuroscience that pain has a significant emotional component. The evolutionary benefit is to having an emotional component is that it makes it less likely that the animal will try to override the pain.
Yes I agree with that theory, but I don't see how that proves that pain is completely decoupled from physical damage, and just randomly happens to some people solely because they are upset or "disturbed".
I never said that.
Thanks for the perspective. As you said, it’s very tough in the moment to hear from the doctor that it’s in your head. When you’re physically ill and looking for real answers it really feels like a non-answer. To me as a patient that answer feels more like pseudoscience. It might be right or it might not be in my specific case, but when a doctor quickly gives up trying to diagnose a problem and suggests it’s in your head it’s an extremely invalidating experience.
Just to add to the above: the reason that "adrenal fatigue" was coined is because stress does affect the adrenal glands: initially it causes increased release of cortisol and an increase in size in the glands, but chronic stress can result in hypofunction of the HPA axis, resulting in lower cortisol and sometimes shrinking of the adrenal glands. Whether chronic stress results in fatigue and low cortisol depends on the nature of the stressor, the time since onset, personality factors, etc.
http://dx.doi.org/10.1037/0033-2909.133.1.25
Unfortunately the "adrenal fatigue" crowd have taken this little bit of science and completely mangled it, blaming the adrenal glands themselves and pushing dubious supplements that have no scientific basis.
Just thought I'd add that I was diagnosed with adrenal fatigue by a medical doctor. I was pretty annoyed, after researching it, because it seemed entirely pseudo-scientific.
In reality I had stress-induced depression with a high degree of physical fatigue as one of the symptoms. When I stopped being depressed, my fatigue went away. Adrenal fatigue is nonsense.
And the "Adrenal Fatigue" alternative medicine folks simply make it harder for a person with an actual adrenal disorder to be diagnosed by a doctor because they are understandably skeptical if a person comes in with a set of vague symptoms and suggests it's related to adrenaline.
No it's not, adrenal fatigue is when you cant produce enough hormones primarily cortisol
What he has is "bilateral adrenal medullary hyperplasia. In layman's terms, it means the medullas, or inner regions, of his adrenal glands were enlarged and acting like tumors. His adrenal glands were producing way too much adrenaline."
But why couldn't the endocrinologist check via a blood test that he was producing too much adrenaline?
Simple... why would the endocrinologist check for that? Much of modern medicine is “I see A with B, so I test for C, maybe D and E.
Once your out of stuff you can think to test for modern medicine doesn’t start throwing tests at the wall to see what sticks... it shrugs its shoulders and gives up.
Now sometimes this is good (hypochondria + psychosomatic problems) but sometimes this is bad... failure to get a diagnosis due to skipping something they didn’t think of.
This is why I always tell people who are unsatisfied with the handling of their medical problems to get a second opinion, a third opinion, as many opinions as it takes. If your doctor says they don’t know why something hurts... ask another one. At some point you should press for referring to a specialist... even if it’s a damn psychiatric specialist because they think it’s in your head... when they check you’re not crazy, that’s one less excuse they have for ignoring your problems.
That’s what this person did here. Eventually the only opinions left were the ones they had to dig up on their own. Sometimes this path even involves researching new (or old/forgotten/misunderstood) but at the end of the day this is how hard it is to understand how the body actually works.
It’s one of the reasons I’m so thankful for my reasonably good health. There’s a nearly infinite number of ways the body can be broken or damaged, the fact is we only understand a small part of the most common things that go wrong and can fix an even smaller number of the things we do understand.
Edit to pre-empt criticism of affordability of this approach: I live in Australia where we have public healthcare so everyone can see a doctor (or twelve) without being driven into bankruptcy.
The problem with "just throwing tests at the wall" is that every test has a false positive rate. For rare diseases like this (~30 documented cases ever!) even tiny false positive rates will lead to significant over-diagnosis.
I suppose you rule out false positives by determining whether the combination of measurements could explain the symptoms.
I imagine we have received the crib notes of this story.
He was able to improve his condition by being on a permenant norad infusion, which is something we only do in hospitals to critically ill patients who are having a hard time keeping their blood pressure in any normal range. Generally, norad is a shorter acting version of adrenaline that acts on a slightly different hierarchy of the same receptors. If it was as simple as ‘too much’ adrenaline, I suspect some benefit effect would have been seen by beta blockers. Maybe there is, maybe that’s one of the 9 medications he takes every day.
Worth noting also that a condition that dumps way too much adrenaline into the body, phaeochromocytoma, is often an incidental finding; so this obviously presents differently despite having (simplistically, from the article) the same type of mechanism.
We don’t have all the information we need to make inferences from this particular article
No. Adrenal fatigue is little more than alt-med jargon for what the average HNer would call burnout. The invocation of adrenal dysfunction is, to put it politely, poetic license.
That’s a bit harsh. While I agree that adrenal fatigue and other catch-all diagnoses used by “alternative medicine” aren’t based in science I do think we need to have an open mind and consider the possibility that people are dealing with an actual medical issue that we simply haven’t isolated/identified yet.
To casually dismiss a person’s symptoms as all in their head is just as dangerous as trying to treat their symptoms with alt-med hocus pocus.
I agree completely. There is absolutely a real need here, but alternative medicine is exploiting it instead of addressing it.
Doctors were baffled. Treatments didn't help. And Lindsay eventually realized that if he wanted his life back, he would have to do it himself.
This applies to almost any health problem you might encounter in the US. It's rare to find a doctor who actually cares and even more rare to find one that will dig deep to help you.
One of the greatest lies ever told is that you can trust your doctor and that there isn't more you can do if the doctor says so.
The problem probably lies somewhere between afraid of getting sued and not wanting to shake the medical groupthink apple cart.
Last year I was suffering through a bout of strange fatigue that came about right after a mysterious throat infection. There were days I could barely go up the stairs without being winded or without assistance. I googled around and started reading about Chronic Fatigue Syndrome (CFS) and found this large, shadow community of millions of sufferers. Many of these people have had these symptoms for years, and when they go to the doctor they are simply told "It's all in your head," and if lucky, they'll run some tests and prescribe something that gives them temporary relief.
I asked my cousin who is a doctor about his opinion on CFS, and he told me it was difficult to diagnose and even harder to treat. The most they will do is refer you to a specialist or even psychiatrist.
After a couple months my fatigue went away on its own. But I did find that creatine helped. And this has been backed by others in the CFS community who have stated that eating raw meat relieves their symptoms (natural creatine in meat is destroyed once cooked). But a doctor would never tell me that, because if there isn't conclusive proof from a medical journal and/or a big pharma drug to prescribe, they are either too afraid or unwilling to say anything.
You probably can trust your doctor, but look at his situation. You're one of how many patients he's seeing today? You're a valued customer and the Doctor even likes you, and still he cannot give your problems a fraction of the attention you do.
I find it puzzling that so many people's first (and often only) reaction to health problems is "see what the doctor says," never granting themselves agency or permission to conclude they're actually sick or try a treatment that someone else didn't recommend.
I hate to say it, but I think that having someone in a clinical setting that serves as a patient rep (like a doctor lawyer) that the doctor is actually interested in listening to could be helpful. The biggest issue is patients don't know what's important to say, and doctors don't have the time or patience to probe the patient for enough details.
What a remarkable story!!
Remarkable story. It's amazing how closed-minded "experts" can be. I suspect there are many conditions that will eventually be understood thanks to the hard work of people who approach these illnesses with the curiosity of a scientist instead of the hubris of an "expert."
> It's amazing how closed-minded "experts" can be
Speaking as someone who has been in a comparable (though not nearly as severe) predicament to Lindsay's for several years, I'm more sympathetic to the experts.
Medical science is incredibly vast and complex, and is limited by external constraints like research funding, insurance, the political/social climate, and many other factors.
There is a limit to how much attention the practitioners and researchers can devote to any topic, and they have to focus on what will generate the greatest overall benefits whilst keeping themselves in a living.
And for every "tip of the iceberg" Doug Lindsay who figures out a valid diagnosis and treatment, there are countless time-wasters.
I've been one of the time-wasters in the past, and it'd be nice to think that after the many years of research and experimentation I've done, I’m closer to being a bit like Lindsay (though fortunately I won't be needing to find someone to slice my adrenals open, thanks!).
There could well be a place for a system that makes it easier for people like Lindsay to be heard and taken seriously. Surely there are many others who have made similar breakthroughs in understanding their own illness, but who aren't able to talk their way into medical conferences and present well enough to be listened to.
But let's not be too harsh on the experts, at least in the medical profession. It's a pretty challenging and thankless business for them, much of the time.
This guy spent 11 years becoming an expert. He talked to experts. He learned from and worked with experts. All those doctors and professors in the article who helped him are experts. He found his answer in a medical textbook.
If your take is "experts are rubbish" then you have fundamentally missed the point.
Let's try not to be too black/white about this.
Different types of expertise are valid and important, and different people have different motivations for what they do and how they do it.
The key point of this article is that someone who started out as a non-expert, was motivated by his own need to overcome an illness that established experts couldn't diagnose or treat, because they didn't share his predicament.
Let's just try to appreciate that for what it is.
They way I interpreted his take was that experts can be stubborn and risk-adverse. After all, the downside risk for reputation probably outweighs the upside for a risky and unique surgery.
While true, many were extremely skeptical and many didn’t want to be associated with him so he had to seek out people who were willing to risk their professional reputation to help him.
>Remarkable story. It's amazing how closed-minded "experts" can be.
Yes, but it's also amazing how kooky, dangerous, delusional non-experts that think they know better can be -- so their close-mindness is part of an attempt to balance that.
Just two examples that millions of people believe in: perpetual motion machines and homeopathic drugs...
Yes. When an expert receives something from an non-expert outsider, statistically, it's very likely that outsiders have no idea on what they are talking about, and only a small chance that the outsider really knows something and even lesser chance that the outsider has made a groundbreaking discovery.
And from The Bullshit Principle (https://statmodeling.stat.columbia.edu/2019/01/28/bullshit-a...): the amount of energy needed to refute bullshit is an order of magnitude bigger than to produce it. As a natural result, if everything from outsiders are taken seriously, wasting 99% of time is guaranteed, so experts are trained to ignore them. Ignoring authentic insight is an unfortunately consequence, but I fail to see how the problem can be solved.
Also, the issue of expert vs. non-expert and insiders vs. outsiders are different. You can be an outsider who rejects established technical dogmas or institutional power structure, while still being an expert in terms of knowledge (although whether someone is being recognized as an expert is a social-political question, but let's idealize), and you're very likely to be rejected from the academia, however, on the other hand, the combination of "non-expert" + "outsider" makes people don't even take you seriously.
it’s an inspiring story for sure, and a good reminder to experts to curb their arrogance and keep an open mind. It’s also worth noting that by about midway through the process he was largely an expert in the field, and who cares if he was self taught. The professors and surgeons who listened to him obviously thought he was competent enough to listen to his ideas and act with him.
The last thing the world needs, however, is more armchair experts declaring that their opinion is greater than someone else’s knowledge. That, after all, is how we’ve ended up with anti vaxxers, a resurgence in largely cured infectious diseases, and many other medical and social ailments of our modern age (politics anyone?)
> That, after all, is how we’ve ended up with anti vaxxers, a resurgence in largely cured infectious diseases, and many other medical and social ailments of our modern age (politics anyone?)
Medicine is great when it works, but sometimes it causes the diseases they supposedly treat.
Psychiatry is a case study in ideological capture resulting in iatrogenic illness. My girlfriend was misdiagnosed, but since they use the courts to force her to take the drugs that actually make people suicidal (common result of anti-psychotics) and die of liver failure (my aunt's friend), there's no way for her to escape.
The tragedy of Psychiatry is that the physiology of the conditions are largely understood, but this understanding didn't reach the practitioners working with patients.
People are drawn to "alternative medicine" when their mainstream medicine practitioners shrug their shoulders. In the United States, standard insurance-based medicine is a wealth-transfer operation: it's fantastically expensive approach to rendering needed services.
Medicine, as an applied science, consists of a spectrum of fields between areas that are largely ‘engineering’ and areas that are largely ‘art’. Surgery, for the most part, is something more like engineering/science, where we have most of the answers and don’t have to modify practice too much in response to new knowledge; Psychiatry is still largely art. Frankly, making an argument for the failings of medicine based on psychiatry is like blaming a 2 year old for not being toilet trained.
I agree that people are drawn to alternative medicine when they can’t get answers from doctors. And I am a vocal advocate both inside and outside of medicine for the failings of the system. For example, if I turn up to the GPS office and sit in a room of sick kids with paint peeling off the walls to be seen by a disinterested doctor for 15 minutes who sends me away without giving me a deifinitive answer to my questions/concerns; then later go to an alt-Med quack with a water fountain in the waiting room, incense burning and she spends 45 minutes with me listening to my problems, who am I going to come back to, especially if I derive benefit (there are studies showing that practitioner engagement and active listening are for many common ‘modern’ presentations highly effective)
Part of this is the modern world has produced people who are so healthy and generally well off compared to our forebears that the moment they develop an ache or pain they fear the sky is falling and demand an answer.
And medicine doesn’t have answers, or maybe not the answer these people want, because most of these things are just the process of growing old in and of itself - people are externalising their existential angst on a system that was designed to treat sick people, not the walking well.
For example, of the 17 patients I treated in the emergency department on my last 2 shifts, 9 of them should have never even turned up to the department. They had nothing wrong with them, or nothing that staying at home, resting and using some common sense wouldn’t have fixed. Yet there they are demanding answers to questions that our forebears would have considered part of life; and which in any regard we can’t fix anyway.
I don’t work in the US but the system there is so fucked that I wonder how long until it contributes to a broader breakdown in society; healthcare is a basic human right and you’re right the wealth transfer aspect of it is disenhartening and concerning.
> Psychiatry is a case study in ideological capture resulting in iatrogenic illness. My girlfriend was misdiagnosed, but since they use the courts to force her to take the drugs that actually make people suicidal (common result of anti-psychotics) and die of liver failure (my aunt's friend), there's no way for her to escape.
Psychology is kind of a special case, since there's often no physical evidence of the condition. You're just going by what you see and hear from the patient. Add to that the replication crisis, which is especially bad in the field of psychology, and you'll get a lot of things you think are proven but really aren't. And of course then there's the added issue of the justice system in your case. While already being punitive in general, they also use forced therapy and institutionalization as a punitive measure rather than a protective one used only in emergencies. Other fields of medicine don't have these problems (except for the replication crisis to some extent).
> The tragedy of Psychiatry is that the physiology of the conditions are largely understood, but this understanding didn't reach the practitioners working with patients.
That's also one of the problems. Practitioners aren't required to keep up with new research (maybe in some jurisdictions they are? I'd be interested to know), so many work on obsolete knowledge. I'd assume that many very specialized doctors like brain surgeons do keep up somewhat, but GPs most likely don't. It probably depends on their workplace as well. This one is common to all fields of medicine.
> Medicine is great when it works, but sometimes it causes the diseases they supposedly treat.
I'd say that's usually not the case (i.e. vaccines won't give you the disease they should protect you from), but psychology is special once again. With psychotherapy, patients can feel pretty vulnerable, and a bad therapist can make things worse by exacerbating existing mental disorders or even inducing new ones. Psychiatry works with lots of double-edged medications. A good psychiatrist will work with their patients to find the right medication and dosage, but a bad therapist may just prescribe whatever they think is right and disregard the patients opinions.
Unfortunately, for every "outsider" with a legitimate idea, there are hundreds more emailing designs for time machines to physicists or selling homeopathic products.
Wow, that's a particularly nasty clickbaity headline. He only dropped out because of the disease that caused him to be bedridden for those 11 years.
Maybe "Student was bedridden for 11 years..." would be more accurate.
It also doesn't give a clear picture of the full story, which is years of personal study from medical textbooks, discussions with scientists, partnering with them over years of research to figure things out, and get to a diagnosis, and then, yes, design a new surgery.
It is a good story. Just a bad headline.
Piggybacking off of your comment, regarding click bait.
In the news where I'm at, if a 19 year old does something good, they refer to him/her as a "Teenager."
If this same 19 year old does something bad, "MAN ARRESTED FOR..."
Never understood it.
In our societies obsession with punishment as a means of dealing with wrongdoing it is easier to justify punishing a man than a teenager, so I think we subconciously prefer to frame it that way to justify wanting to enact punishment.
It isn't always good, though.
"Teenage Pregnancy", for example. Most folks picture someone young. 15-16, perhaps. Most folks don't stop to consider that a very sizable portion of "teenage pregnancy" happens to 18 and 19 year olds, which while young isn't that uncommon either.
This itches me a bit tad as well. I immediately assume the author is trying to belittle or judge the person, it's a bias or some kind of semi-conscious compensation and revenge process.
This is an incredible story. His mom had the same undiagnosed, unfixable problem. The gist is,
> If he could cut out the medullas of his adrenal glands -- sort of like slicing into a hard-boiled egg and removing the yolk -- his health would improve.
> Eventually he recruited a surgeon from the University of Alabama-Birmingham. In September 2010 Lindsday went to the university hospital, where the doctor successfully extracted one of his adrenal medullas.
> Three weeks after the procedure, Lindsay could sit upright for three hours. By Christmas Eve, he had the strength to walk a mile to church.
> But progress was slow. In 2012, he underwent a second surgery at Washington University in St. Louis to remove the medulla from his remaining adrenal gland.
> A year later, he was well enough to fly with friends to the Bahamas. It was the first time in his life the Midwesterner had seen the ocean.
I understand the urge to summarize, but maybe interested HN users can be expected to read the article before coming to the comments? This seriously degrades the quality of discussion.
It's fine to bemoan people commenting who haven't read the article, but reading the comments first to gauge if the article is clickbait/whatever is a perfectly valid use-case.
I also cherish summaries like these - if I read the whole article I won't remember more than 2 sentences of it tomorrow. That distillation process is inevitable and good. It's a service to do it well for those who are time/memory-limited.
Thanks! At the time I wrote this, the majority of comments were focused on criticizing the headline [1], and there was little discussion of the article itself.
Now I see there are many comments about the content of the article. I don't know if the summary caused more people to read it or not. I wanted to encourage more readership and on-topic discussion.
I am often more interested in the comments here than the content of the article so I am happy with the summary.
I can often understand what the article is about and go to the comment section for pros and cons
For reading, maybe, but it's a lot harder to contribute something meaningful if you don't know the context to start with.
There is a popular trend where people will read the comments first and depending on the discussion they move to read the article
I’d call it a tactic, not a trend. It’s been around since the advent of halfway decent comment sections.
I don't believe this, but there's not enough info out there online to tell.
Article from his experience before surgery in 2010 -
https://www.riverfronttimes.com/stlouis/is-there-a-doctor-in...