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

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

#91

Post by uberduber »

rubyfan wrote: post #32
tomhoward wrote: post #14

Earlier quoted context omitted.

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 deb…

I’m curious what sort of stresses are thought to cause adrenal issues. Can they be environmental/situational vs. chronic hereditary? About 5 years ago I was fairly healthy, eating great and CrossFit 6 days a week. Then my body started to become tired all the time. I had pretty high work stress at the time along with what might be considered frequent physically stressful workouts. I suddenly found myself sleeping most…

I'm chronically ill and had bad fatigue. I am a small, skinny woman with no muscle.

So, first time a doctor asked me if I did CrossFit, I thought it was a bit odd but didn't think too much about it. The third time a doctor asked "Do you do CrossFit?" I replied "Does it look like I do CrossFit?!" and she was like "Yeah, it does."

Apparently it's not uncommon where I live that there is some sort of vegan CrossFit disease, where the 80% of the treatment is is to stop being vegan and stop doing CrossFit.

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

#92

Post by disabled »

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...

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

#93

Post by rubyfan »

m348e912 wrote: post #53
magic_beans wrote: post #39

Earlier quoted context omitted.

A year ago I was doing CrossFit 6 days a week. Then I started getting more and more tired. I developed ulcerative colitis and now I alternate between insomnia and sleeping 12 hours a day. I think years of physical stress from crossfit triggered latent disease. I'm still trying to get my body working normally again. Yoga and CBD are helping.

This is just a shot in the dark but check your vitamin d levels. I am just getting backup the level of activity that I was at after going through a similar situation where I went from running 20+ miles a week to not being able to walk a half mile. 3+ months of vitamin D for me started to move the needle in the right direction.

How did you go about testing and treating? Is this a thing a regular doctor can have tested? I have friends that swear by naturopaths and they usually say they start with lots of tests for vitamin levels.

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

#94

Post by rubyfan »

uberduber wrote: post #91
rubyfan wrote: post #32

Earlier quoted context omitted.

I’m curious what sort of stresses are thought to cause adrenal issues. Can they be environmental/situational vs. chronic hereditary? About 5 years ago I was fairly healthy, eating great and CrossFit 6 days a week. Then my body started to become tired all the time. I had pretty high work stress at the time along with what might be considered frequent physically stressful workouts. I suddenly found myself sleeping most…

I'm chronically ill and had bad fatigue. I am a small, skinny woman with no muscle. So, first time a doctor asked me if I did CrossFit, I thought it was a bit odd but didn't think too much about it. The third time a doctor asked "Do you do CrossFit?" I replied "Does it look like I do CrossFit?!" and she was like "Yeah, it does." Apparently it's not uncommon where I live that there is some sort of vegan CrossFit disea…

Interesting, I was vegan for about a year before starting CrossFit. Was gluten free, alcohol free, dairy free and exercised frequently and felt basically the best of my life. After starting into CrossFit I added meat back into my diet which basically became paleo at that point. After about 10 months the fatigue started.

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

#95

Post by rubyfan »

magic_beans wrote: post #39
rubyfan wrote: post #32

Earlier quoted context omitted.

I’m curious what sort of stresses are thought to cause adrenal issues. Can they be environmental/situational vs. chronic hereditary? About 5 years ago I was fairly healthy, eating great and CrossFit 6 days a week. Then my body started to become tired all the time. I had pretty high work stress at the time along with what might be considered frequent physically stressful workouts. I suddenly found myself sleeping most…

A year ago I was doing CrossFit 6 days a week. Then I started getting more and more tired. I developed ulcerative colitis and now I alternate between insomnia and sleeping 12 hours a day. I think years of physical stress from crossfit triggered latent disease. I'm still trying to get my body working normally again. Yoga and CBD are helping.

I’ve recently started a regime of CBD and have wondered if it’s helped my health. Of course, it could be placebo and totally unrelated.

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

#96

Post by drieddust »

fiblye wrote: post #61
barkingcat wrote: post #31

Earlier quoted context omitted.

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…

I’ve got a relevant experience to back this up. I had a urinary tract infection that I felt progress up to my bladder and eventually into one kidney and then the next. I would’ve liked to visit a doctor immediately, but with American medical costs being what they are and hospitals advising me to hold out a few more days until a doctor in my insurance network was available, I’d hoped that small stinging pain down ther…

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

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

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

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

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

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

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

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

#97

Post by cpncrunch »

IAmGraydon wrote: post #26

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.

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

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

#98

Post by Aloha »

fiblye wrote: post #61
barkingcat wrote: post #31

Earlier quoted context omitted.

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…

I’ve got a relevant experience to back this up. I had a urinary tract infection that I felt progress up to my bladder and eventually into one kidney and then the next. I would’ve liked to visit a doctor immediately, but with American medical costs being what they are and hospitals advising me to hold out a few more days until a doctor in my insurance network was available, I’d hoped that small stinging pain down ther…

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

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

#99

Post by sjg007 »

vimy wrote: post #80
sjg007 wrote: post #71

Earlier quoted context omitted.

Citation? The CDC and NIH disagree with you. https://www.cdc.gov/lyme/postlds/index.html

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

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

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

#100

Post by est31 »

dreamcompiler wrote: post #73

Related: A great article on HN member mattmight a few days ago. Matt's a brilliant computer scientist and teacher who was inspired by his son's condition to switch careers and investigate rare diseases full-time. https://www.statnews.com/2019/07/25/ai-expert-writing-code-s...

Github link: https://github.com/webyrd/mediKanren
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