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

427 points| actraub | 6 years ago |www-m.cnn.com

142 comments

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[+] disabled|6 years ago|reply
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/fir...

[+] PierredeFermat|6 years ago|reply
That's quite inspiring. Do you mind connecting via email? (Not a media request; just to learn and exchange some ideas)
[+] dpeterson|6 years ago|reply
With immune therapy, did that help with your type 1 diabetes at all?
[+] joshgel|6 years ago|reply
> 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...

[+] DangitBobby|6 years ago|reply
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.

[+] mistermann|6 years ago|reply
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?
[+] badamp|6 years ago|reply
> 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.

[+] vladus2000|6 years ago|reply
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.

[+] IAmGraydon|6 years ago|reply
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.
[+] salex89|6 years ago|reply
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.
[+] trollied|6 years ago|reply
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.

[+] DoreenMichele|6 years ago|reply
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.

[+] _fat_santa|6 years ago|reply
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.

[+] shgidi|6 years ago|reply
Love to hear anyone more people who invented a cure for their own illness
[+] johnchristopher|6 years ago|reply
So, is it related to adrenal fatigue which is not yet fully recognized AFAIK ? Would it help ?
[+] tomhoward|6 years ago|reply
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.

[+] jokowueu|6 years ago|reply
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."

[+] 0xcde4c3db|6 years ago|reply
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.
[+] Mc_Big_G|6 years ago|reply
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.

[+] joeax|6 years ago|reply
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.

[+] h2odragon|6 years ago|reply
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|6 years ago|reply
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.
[+] xiaodai|6 years ago|reply
What a remarkable story!!
[+] bollockitis|6 years ago|reply
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."
[+] tomhoward|6 years ago|reply
> 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.

[+] onion2k|6 years ago|reply
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.

[+] coldtea|6 years ago|reply
>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...

[+] robbiep|6 years ago|reply
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?)

[+] sfkdjf9j3j|6 years ago|reply
Unfortunately, for every "outsider" with a legitimate idea, there are hundreds more emailing designs for time machines to physicists or selling homeopathic products.
[+] bjpirt|6 years ago|reply
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|6 years ago|reply
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|6 years ago|reply
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.

[+] unityByFreedom|6 years ago|reply
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|6 years ago|reply
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.