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...
By the time you are diagnosed with type 1 diabetes, around 90% or so of the islet cells (insulin producing cells) are eradicated, supposedly.
https://www.statnews.com/2019/07/25/ai-expert-writing-code-s...
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...
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.
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 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.
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.
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.
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 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.
Note: she was a head nurse and the textbook definition of "walk it off".
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.
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.
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....
Michael J Fox helps cures Parkinson’s:
Augie Nieto with ALS:
[1] https://news.ycombinator.com/item?id=11334660 [2] https://en.wikipedia.org/wiki/Leo_Szilard#Cancer_diagnosis_a...
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.
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.
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.
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.
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.
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."
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.
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.
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.
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.
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.
If your take is "experts are rubbish" then you have fundamentally missed the point.
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.
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...
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.
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?)
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.
Maybe "Student was bedridden for 11 years..." would be more accurate.
It is a good story. Just a bad headline.
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.
"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.
> 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 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.
I can often understand what the article is about and go to the comment section for pros and cons
Article from his experience before surgery in 2010 -
https://www.riverfronttimes.com/stlouis/is-there-a-doctor-in...
