11 ms·

Bedridden for 11 years, he discovered a surgery for his adrenal condition

427 points by actraub 7y ago

bjpirt 7y ago
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.
- codingdave 7y ago
  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.
- qrbLPHiKpiux 7y ago
  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.
  - johnchristopher 7y ago
    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.
  - have_faith 7y ago
    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.
  - Broken_Hippo 7y ago
    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.
johnchristopher 7y ago
So, is it related to adrenal fatigue which is not yet fully recognized AFAIK ? Would it help ?
- jokowueu 7y ago
  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."
  - amelius 7y ago
    But why couldn't the endocrinologist check via a blood test that he was producing too much adrenaline?
    - robbiep 7y ago
      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
    - techdragon 7y ago
      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.
unityByFreedom 7y ago
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.
- ricardobeat 7y ago
  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.
  - pmelendez 7y ago
    There is a popular trend where people will read the comments first and depending on the discussion they move to read the article
    - gshdg 7y ago
      I’d call it a tactic, not a trend. It’s been around since the advent of halfway decent comment sections.
  - amundsentb 7y ago
    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
bollockitis 7y ago
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."
- sfkdjf9j3j 7y ago
  Unfortunately, for every "outsider" with a legitimate idea, there are hundreds more emailing designs for time machines to physicists or selling homeopathic products.
- robbiep 7y ago
  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?)
  - tcj_phx 7y ago
    > 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.
melling 7y ago
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: https://www.michaeljfox.org/ https://www.michaeljfox.org/ Augie Nieto with ALS: https://augiesquest.org/ https://augiesquest.org/
- RealityVoid 7y ago
  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 https://news.ycombinator.com/item?id=11334660 [2] https://en.wikipedia.org/wiki/Leo_Szilard#Cancer_diagnosis_and_treatment https://en.wikipedia.org/wiki/Leo_Szilard#Cancer_diagnosis_a...
  - isseu 7y ago
    Cure himself and discover a new cancer treatment? Wow
    - dahauns 7y ago
      Well, We're talking about Léo "I built the first nuclear reactor with Enrico Fermi" Szilárd here... :)
IAmGraydon 7y ago
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.
- barkingcat 7y ago
  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".
  - BurningFrog 7y ago
    For my money it was just an ordinary cock up.
  - IAmGraydon 7y ago
    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.
    - DataWorker 7y ago
      Where do they do yearly physicals? You must not have hmo coverage.
      - jdavis703 7y ago
        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.
_fat_santa 7y ago
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.
Mc_Big_G 7y ago
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.
- h2odragon 7y ago
  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.
- DangitBobby 7y ago
  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.
- joeax 7y ago
  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.
joshgel 7y ago
> 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...
- mistermann 7y ago
  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?
- DangitBobby 7y ago
  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.
DoreenMichele 7y ago
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.
nullwasamistake 7y ago
This guy seems crazy. There's a million things they can give you for energy so you don't lay in bed all day. Also, the hell is he choosing to lay in bed over sitting in a nice comfy chair? The only reason bedridden people are in beds is to make it easy to roll them over and hook them up to machines. This guy didn't need either. It doesn't take a decade to discover adrenal gland issues, I think this guy is a basket case.
- mkagenius 7y ago
  > The only reason bedridden people are in beds is to make it easy to roll them Not sure if you have ever fallen ill and had fever. That thing will make you want to lie on the bed.
- salex89 7y ago
  Are you sure you read that properly? Maybe it is not clear from the text, but basically adrenal gland malfunction which result in hyperproduction of adrenaline literally burn you up. Hormone disbalance in general can mess you up seriously. I have a female friend which had all sorts of health issues. Bringing hormone levels under control (not hormones themselves but the causes) helped her become a new person and liven up. She might even consider having kids now. She is still under all sorts of therapies, but it is not trivial to relate causes and effects, her case not being even remotely mistic. Imagine when the direct cause is a rarely problematic hormone, provoked by an even more obscure issue.
vladus2000 7y ago
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.
- azinman2 7y ago
  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.
shgidi 7y ago
Love to hear anyone more people who invented a cure for their own illness
dreamcompiler 7y ago
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-save-son/ https://www.statnews.com/2019/07/25/ai-expert-writing-code-s...
- est31 7y ago
  Github link: https://github.com/webyrd/mediKanren https://github.com/webyrd/mediKanren
trollied 7y ago
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.
salex89 7y ago
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.
disabled 7y ago
Wow. 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/first-blog-post/ https://rareandextraordinarycom.wordpress.com/2016/05/14/fir...
- dpeterson 7y ago
  With immune therapy, did that help with your type 1 diabetes at all?
  - disabled 7y ago
    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.
    - dpeterson 7y ago
      Sorry to hear that. I was hoping for you that the new therapy you were receiving gave your pancreas time to heal too.
RandomGuyDTB 7y ago
Better link: http://lite.cnn.io/en/article/h_07a19d2a7645bf0a58a5f75ea2cf4869 http://lite.cnn.io/en/article/h_07a19d2a7645bf0a58a5f75ea2cf...
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aaron695 7y ago
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-the-house-confined-to-his-home-for-a-decade-doug-lindsay-is-certain-he-knows-what-ails-him-and-he-thinks-he-knows-the/Content?oid=2483138 https://www.riverfronttimes.com/stlouis/is-there-a-doctor-in...
xiaodai 7y ago
What a remarkable story!!

427 points by actraub 7y ago

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.

codingdave 7y ago
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.
qrbLPHiKpiux 7y ago
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.
- johnchristopher 7y ago
  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.
- have_faith 7y ago
  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.
- Broken_Hippo 7y ago
  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.

johnchristopher 7y ago

So, is it related to adrenal fatigue which is not yet fully recognized AFAIK ? Would it help ?

jokowueu 7y ago
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."
- amelius 7y ago
  But why couldn't the endocrinologist check via a blood test that he was producing too much adrenaline?
  - robbiep 7y ago
    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
  - techdragon 7y ago
    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.

unityByFreedom 7y ago

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.

ricardobeat 7y ago
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.
- pmelendez 7y ago
  There is a popular trend where people will read the comments first and depending on the discussion they move to read the article
  - gshdg 7y ago
    I’d call it a tactic, not a trend. It’s been around since the advent of halfway decent comment sections.
- amundsentb 7y ago
  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

bollockitis 7y ago

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."

sfkdjf9j3j 7y ago
Unfortunately, for every "outsider" with a legitimate idea, there are hundreds more emailing designs for time machines to physicists or selling homeopathic products.
robbiep 7y ago
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?)
- tcj_phx 7y ago
  > 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.

melling 7y ago

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: https://www.michaeljfox.org/ https://www.michaeljfox.org/ Augie Nieto with ALS: https://augiesquest.org/ https://augiesquest.org/

RealityVoid 7y ago
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 https://news.ycombinator.com/item?id=11334660 [2] https://en.wikipedia.org/wiki/Leo_Szilard#Cancer_diagnosis_and_treatment https://en.wikipedia.org/wiki/Leo_Szilard#Cancer_diagnosis_a...
- isseu 7y ago
  Cure himself and discover a new cancer treatment? Wow
  - dahauns 7y ago
    Well, We're talking about Léo "I built the first nuclear reactor with Enrico Fermi" Szilárd here... :)

IAmGraydon 7y ago

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.

barkingcat 7y ago
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".
- BurningFrog 7y ago
  For my money it was just an ordinary cock up.
- IAmGraydon 7y ago
  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.
  - DataWorker 7y ago
    Where do they do yearly physicals? You must not have hmo coverage.
    - jdavis703 7y ago
      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.

_fat_santa 7y ago

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.

Mc_Big_G 7y ago

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.

h2odragon 7y ago
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.
DangitBobby 7y ago
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.
joeax 7y ago
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.

joshgel 7y ago

> 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...

mistermann 7y ago
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?
DangitBobby 7y ago
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.

DoreenMichele 7y ago

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.

nullwasamistake 7y ago

This guy seems crazy. There's a million things they can give you for energy so you don't lay in bed all day. Also, the hell is he choosing to lay in bed over sitting in a nice comfy chair? The only reason bedridden people are in beds is to make it easy to roll them over and hook them up to machines. This guy didn't need either. It doesn't take a decade to discover adrenal gland issues, I think this guy is a basket case.

mkagenius 7y ago
> The only reason bedridden people are in beds is to make it easy to roll them Not sure if you have ever fallen ill and had fever. That thing will make you want to lie on the bed.
salex89 7y ago
Are you sure you read that properly? Maybe it is not clear from the text, but basically adrenal gland malfunction which result in hyperproduction of adrenaline literally burn you up. Hormone disbalance in general can mess you up seriously. I have a female friend which had all sorts of health issues. Bringing hormone levels under control (not hormones themselves but the causes) helped her become a new person and liven up. She might even consider having kids now. She is still under all sorts of therapies, but it is not trivial to relate causes and effects, her case not being even remotely mistic. Imagine when the direct cause is a rarely problematic hormone, provoked by an even more obscure issue.

vladus2000 7y ago

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.

azinman2 7y ago
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.

shgidi 7y ago

Love to hear anyone more people who invented a cure for their own illness

dreamcompiler 7y ago

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-save-son/ https://www.statnews.com/2019/07/25/ai-expert-writing-code-s...

est31 7y ago
Github link: https://github.com/webyrd/mediKanren https://github.com/webyrd/mediKanren

trollied 7y ago

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.

salex89 7y ago

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.

disabled 7y ago

Wow. 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/first-blog-post/ https://rareandextraordinarycom.wordpress.com/2016/05/14/fir...

dpeterson 7y ago
With immune therapy, did that help with your type 1 diabetes at all?
- disabled 7y ago
  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.
  - dpeterson 7y ago
    Sorry to hear that. I was hoping for you that the new therapy you were receiving gave your pancreas time to heal too.

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aaron695 7y ago

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-the-house-confined-to-his-home-for-a-decade-doug-lindsay-is-certain-he-knows-what-ails-him-and-he-thinks-he-knows-the/Content?oid=2483138 https://www.riverfronttimes.com/stlouis/is-there-a-doctor-in...

xiaodai 7y ago

What a remarkable story!!