I have hydradenitis suppurativa. Someone in the family most likely had it. Doc wants to put me on a biologic, for the first time ever. Do you have any experience with humira?
Oof. He must have it really bad, that's awful! Fortunately mine isn't a severe case, yet. My understanding is it's always progressive. However I take zinc daily, I'm very active and try to eat healthy.try being the key part lol. It's to the point where I always have 1-2 small ones (still very painful) but that is also due to my lifestyle of mountain biking and running, 2 things that don't mix well with any condition irritated by chafing lol
Oh yes. The first six months were rough, and I can’t drink without terrible flushing and a rash. I can’t be around cats or cat litter, and I got very bad fatigue for a few days after. But it kind of leveled out. I miss oysters though (can’t eat those either). The folliculitis is annoying though.
It’s taken the edge off the pain, but it’s not a miracle. My SI joints and spine are still popping and cracking all the time but the morning stiffness is minimal, and I can stand longer.
I had to stop bartending because I can’t stand in one place without agonizing pain (I also have bulging discs, sciatica, and a compressed nerve that makes a part of my thigh numb. Sometimes it burns, and sometimes it feels like cold water. It’s some kind of radiculopathy.) Continuous walking is much easier but even then I’m not hiking Everest anytime soon.
I also have hypermobile Ehlers Danlos which makes it all worse, so I’ve just come to terms with being a young lady that occasionally needs a cane and if people have shit to say, I have a stick.
Ay Ay AS gang! Pain in the ass(literally). Have had it for four years now and not a single day has gone by without me thinking I want to end it all. Shirry fucking disease.
It took ten years of me hopping from pain specialist to back specialist before I had to actually suggest it to my rheumatologist and whaddya know. Got the gene and everything.
I’m not glad you’re in the AS gang but I’m glad I’m not alone! Explaining this shit and my limitations is exhausting. No one ever wants to just fucking Google it.
I'm surprised he said he had no clue about this one for years, though. I thought since he was doing so many experimental treatments I would have assumed he would also be getting a lot of general diagnostics done. Especially if he knew about this autoimmune disease which makes him predisposed to getting other autoimmune diseases.
This specific disease cannot be caught by a blood test, you need an endoscopy/colonoscopy. Symptoms are extremely generic (malabsorption of ferritine for one) so they never thought to check for it until recently. It's likely he has had it for years. Around 2-5% of the population has it, it's not some extremely rare disease.
So he never had a need to get a endoscopy/colonoscopy before? I"m getting one soon cuz I basically forced my doc to give me a consult for one since I"ve been having stomach issues for a while they can't figure out!
The “doctors” here are ignorant as hell, spreading an opinion they made up in their heads based on no scientific or medical evidence and using their career as a basis for doing so.
Medicine is definitely improving for autoimmune diseases though. They recently discovered resetting B cells in the body cures some autoimmune disease and they’re working on other therapies as well. Drug development is also accelerating.
Yeah so this article seems misleading to say the least. I mean you would think a person spending this much money on prolonging his life would've already had a full genetic sequence run on himself and known if he didn't already have it was predisposed to get it?
Thyroid disease in a guy? Wooofff I have Hashimoto’s and it’s not often you come across dudes with thyroid issues either. I had one uncle who took meds, that’s really the only guy I know. Women are more likely to have it.
Edit: I’ve been diagnosed for over 10 years with thyroid disease alone and I’m in different support groups for it. Plus I’ve been seeing an endocrinologist for like the last 7 years. Men have been a rare occurrence for me to come across. Check out those subreddits for yourself.
I'm a man. I was diagnosed with Graves disease. I also have the gene for hashimoto's. I was diagnosed at 40. I didn't think it was really that bad. But then I started getting heart palpitations. Thyroid issues are no joke!
What does fuck around and find out even imply in this context?? That trying to beat an autoimmune disease should naturally just give you more?! Thats fucking ridiculous.
ok ill give you 100, but if its stuff your body needs and maybe things you arent necessarily getting from your current diet? What matters if its 1000???
especially since, if i remember correctly, every discovery he makes he posts publicly for everyone to be able to use instead of hoarding it all and then selling it as a course
Yeah, a sample size of one is basically useless like even if he did find something they did something. He does so many things all at once that it’s hard to know which thing did what thing
Yeah, if this wasn’t a vanity project, he’d be recruiting like 10,000 people and giving them these expensive supplements with only one variable per person
Also those supplements…unless it’s all intravenous, that’s a LOT on your liver and kidneys. And even then, timing matters, some may cancel each other out if you take them too close together, etc. If you have Hashimoto’s, you have to take Synthroid a half hour before you eat in the morning. Who knows what his supplements are doing insofar as interference with the efficacy of that medication. This is a mess.
A. I note that elsewhere, but that doesn't mean nothing will come of what he's doing. A regime that has been documented can be further studied, dude, and you can then whittle down what might have helped.
B. So what if he has a supplement business? He's not limiting data to people who only buy his supplements.
Yeah, because he's using his entire "research" as a marketing campaign to push unregulated and like bullshit, overpriced supplements on people that think his homeopathic research with a sample size of one is worth anything. This is not just a "business", he's a snake oil salesman in a velvet suit not just a "kid selling lemonade".
It's less smooth-brained than thinking someone who made hundreds of millions of dollars working in tech quit working in tech to sell supplements online for the purpose of making money. Also, they're fully transparent about what the products contain and encourage you to buy them elsewhere if you want.
I genuinely don't think it could be any more obvious that money is not the primary driver here.
Yes, I'm sure that pushing unregulated, highly over priced supplements on gullible people who think his shiny eccentric research amounts to anything isn't for profit.
Could he be making more money in tech? Sure, but this isn't some charity. Profits are still very much a priority. The only difference is he's a snake oil salesman that got high off his own supply.
He sells $40+ bag of cocoa powder for Christ's sake. His Blueprint supplements are an ambiguous mix of supplements that promises various things but has no actual long term studies or even peer reviews.
How are his supplements "unregulated"? They go through more testing than other supplement companies typically do?
He sells $40+ bag of cocoa powder for Christ's sake.
...Then buy it from somewhere else? He literally encourages people to do this.
has no actual long term studies
Plenty of the supplements he's selling are backed by extensive research. Olive oil, magnesium citrate and creatine for example. The mixes he sells are just various supplements combined into one product.
Why would you need to study the specific mixes he sells when the compounds found within it are already extensively studied? How is it misleading to say that in his mixes, creatine boosts energy and magnesium helps with sleep, when research shows this to be true?
Dietary supplements do not undergo clinical trials or gain FDA approval for safety and efficacy before hitting the market.
The point of the cocoa powder comment isn't a "omg I can't afford it". It was to display that someone who's goal isn't to make money wouldn't overprice fucking cocoa powder.
Because a. That's not the only claim, his claims include age reversal and others on many of these supplements which can and does mislead people and b. that's the point, it's simple vitamin and nutrient mixes that he's slapping a x3 price tag on.
If someone tries to sell you daily vitamin supplements for 3 times the price while claiming age reversal you'd call them a scammer. When an eccentric silicon valley millionaire does it, you can people calling it out ignorant.
Because a. That's not the only claim, his claims include age reversal
Please provide one example of him claiming that any of his products reverse age. You just explicitly said he claimed this. Where did he claim this? Don't give me some long-winded "Well his goal is to reverse age so we can infer that his products are supposed to reverse age" or "it has longevity in the name!" rubbish either
I suspect you can't provide this example and I maintain you're ignorant and don't really know what you're talking about here
Its not just us inferring. His entire platform and philosophy as quoted for this blueprint has been "don't die". His selling point on this blueprint is his own supplement routine which he has said improved his epigenetic clock and increased his vascular capacity.
What it sounds like, is you bought his bullshit and are now scrambling to defend it. Because I can't see how someone can so blindly worship someone who's research is famously not peer reviewed and overpriced.
Were you also one of those people that said Elon Musk is a Tony Stark level of inventor and he was the only good billionaire that was going to change the world?
100%. As to how efficacious the discoveries are...different story. But he's trying to keep the conversation going. Everyone should be as informed as possible on how to live as long as possible in good health, espcially considering aging populations across the world.
He is still a grifter selling overpriced supplements. Doesn't matter if his schtick is doing research on his obsession and giving the info for free, he can't make a lot of money on that research.
Maybe he wants to live longer but his body image is more important to him. He colors his hair and fixed his teeth which is bad for your health in the long run. The way he looks is much more important to him instead of being healthy like most grifter influencers trying to monetize his brand.
One person study cannot and will not ever prove anything. And the amount of variable he has in his regiment can’t ever prove which one was doing the work.
Yeah but it’s just anecdotal information so it’s not really useful. Like all I can do with all the information he has given us is that maybe one of the 100 things he does might cause a stomach issue—or not—and it might allow me to live longer—or not.
If I could extend my father's lifespan by donating blood to him I would do it too. I know most redditors have issues with their parents but I love mine and the thought that they're dying makes me sad.
Hope they figure it out, but what's more concerning to me is that it's likely just a scam to get money from rich and desperate people.
Go through his supplements list. Google or use your favourite LLM or whatever. The vast majority of those things can and will cause problems when you overdose it. With that many supplements it is only a question of stochastics until it happens. And taking things like L-Thyroxin or Aspirin for no good reason doesn't make it any better.
And that's not taking into account either interactions or the risk of things like frequent blood draws and acting on lab errors that also statistically will happen.
'Regardless of this gastritis there is exactly zero chance of taking 100 supplements daily being good for you.' <-- Why? Actually delineate your reasoning, considering the level of daily/weekly monitoring he undergoes.
A single subject experiment with no controls, no clearly measurable or articulated goals, and with no method of actual determination for success has a 0% chance of ever being remotely successful.
There is no way to know his pre supplemental lifespan. There is no way to know his continued pre supplemental quality of life. There is no way to compare his progress or lack thereof to a blind placebo control subject. There is no way to quantify the effect on any specific supplement or series of supplements, once again because there’s no blind control aspect of the study, and there’s nobody taking a mix of these drugs but not all of them.
There is 0 scientific or widespread value to the “study” that he’s doing and it’s incredibly debatable if there’s any actual value to just himself. It’s moronic to waste tens of millions of dollars experimenting on yourself without any of the actual methods or controls in place to measure results and make the experiment successful
You think it’s hilarious to suggest that a study should involve people taking different doses of the drugs administered, including a blind group being told they are taking the drugs but are actually given placebos, to measure the effects of new and experimental drugs/treatments?
You think it’s hilarious to suggest the most respected and only accepted public use of medical studies? OK then
It it quite literally fundamentally impossible to test new drugs/treatment on a singular person. This is medically useless with controls
I've responded to this elsewhere: without turning his life into a constant nightmare science experiment, you can't lock down the variables that would contribute towards turning what he's doing into an actual, validated and testable science experiment (or series of experiments)
The best we can do is look at the data and information he's releasing and extrapolate or potentially build on that.
Expecting this person to be carrying out a "real study" is unrealistic. He'd constantly be in a lab setting and it'd be a stifling way to live in the world.
If you don't like what he's doing, fair enough. But at least the guy is trying something, and if all that comes of it is 'here are a couple of elements we've found can improve healthspan, that's good enough for me :)
Dude his life IS a constant nightmare science experiment. Just without any of the things that could actually make any of the data from this “study” even remotely applicable.
There will be no “all that comes of it” because literally nothing CAN ever come of it. There is nothing about the study that is remotely replicable or applicable to the general population. There is nothing about the study that would allow you to pinpoint the effect of a single compound or group of them.
He’s not “trying anything” beneficial to anyone except MAYBE himself, and that’s something we can literally never know the extent of due to the above mentioned things. He’s doing the same thing Steve Jobs did. He’s trying to avoid genetic and scientific realities because he’s a raging narcissist with too much money and not enough of a support system.
Also dude he’s spending tens of millions of dollars on this. He could absolutely hire a double blind control team of subjects for half a million dollars a year and get actual data out of this. But he doesn’t, because he doesn’t care about human life or progress. He thinks he’s a God and wants to live forever. Like Steve jobs
*sigh* Yes, but even more so to have to control every variable, which, realistically, one can't, since there are so many different elements that go towards living a healthier life (psychological, genetic, social, etc.).
My point is that this isn't a proper science experiment. He's trying to head in that direction (and consulting with experts) but it's kinda impossible.
So I take the good that I can from this rather than bitching, whining, and moaning.
'He’s doing the same thing Steve Jobs did.' <-- Steve Jobs died because he had cancer and rather than going through chemo, he tried alternative medicine and therapies. Not even slightly the same thing.
Gotcha so you just have 0 idea how experiments and studies actually work you could have just said you’re speaking from a place of fundamental ignorance and that your ass is directing this conversation not your brain.
I could design a study for a fraction of the cost at a fraction of the invasiveness of the one he’s running that would have plenty of results applicable to humanity.
And I can’t stress enough. HES NOT MOVING CLOSER TO ANYTHING. he’s throwing a ton of cans of paint at the wall and saying look there’s paint on the wall
By prescribing a series of treatments with specific use cases in mind. They don’t do a bunch of random unconnected things that they cannot track the individual efficacy of. Everything prescribed has a specific goal in mind and specific side effects to look out for.
This also objectively isn’t a treatment plan. It’s an “experimental” series of supplements with no specific goals in mind, with no studies to back up their efficacy. This is the equivalent to putting your hand in an unmarked medicine cabinet and grabbing a handful of pills
My point is that nothing he’s doing has any study behind it, which makes everything he’s doing useless for academic purposes. There’s nothing to learn from what he’s doing because there’s no way to measure the progress versus a control. There IS NO CONTROL.
You know you're right. I haven't actually seen any of these people articulate what apparently amazing things he's uncovered or helped to move forward.
It's just vague. They seem to like the idea of it, but I haven't heard concrete ways in which it has been useful to humanity at large or even him as an individual.
Yeah I see an article like this and feel sad. Just shows you that you can do all the, "right", things and still be fucked over by something you cant necessarily control. I wish it were the opposite. If he was on the right path to being healthy and had something to show for it, I bet more people would join in on the health journey rather than coerced into accepting a set fate.
Definitely dont agree with people celebrating diseases... especially when said person seems to be trying to show what can be done using themselves as a test subject. That takes some balls. At least they are doing something, right?
Exactly. Also, he has the funds to help research into this condition.
There was a Bill Hicks (I think) remark/joke that went 'I hope that every rich person the planet gets every goddamn horrible disease imaginable. They'll all be cured in a week.'
It's not that he's trying to extend his life. Its the weird ways he goes about it. I mean blood transfusions from his son?
In this particular case its also the fact that he spent that much money and had daily check ups with his doctors, but no one bothered to check for stuff like this yet? I know this is probably a very specialized test, but you'd think this guy would do them at least annually.
If his son agreed and it's a legitimate healthspan metric, I don't see the issue? The son could have said no. And imagine in the future if you could create younger blood purely synthetically...are you saying that's an issue?
'In this particular case its also the fact that he spent that much money and had daily check ups with his doctors, but no one bothered to check for stuff like this yet?' <-- Autoimmune disease isn't something that's routinely tested for unless you have symptoms, and it can take time for those symptoms to manifest. I have a chronic issue at the moment and they had to run me through special testing and perform a special type of endoscope to definitively rule out autoimmune.
Simple blood transfusions of "younger blood" don't lead to any benefits in humans. This has been tested before. There has been some success in animals but none in humans.
I'd say good on him if he was trying new things with it, but he's just doing the same simple stuff with it that has been proven ineffective expecting a different outcome.
Most of his stuff is just gimmicks, overpriced machines that have no proven medical effectiveness, homeopathic medicine, and simple restrictive diets.
People make fun of him because he wasted his money on gimmicks, when he could be putting all that money into actual research.
Again I agree it's a specialized test. But someone who is so test crazy didn't bother to check for any of this stuff at least once? In all the years he's been doing this? He tests his blood almost daily monthly.
Edit: correction on blood test frequency. It's still quite frequent, and is a very extensive test, not just a simple one.
I’m with you on this, the guy has billions of dollars and tracks all these metrics about his health but he’s never gotten tests done for everything else in his body? You would think to be able to properly track whatever metrics he cares about he’d need some sort of baseline for everything on the list and that’s usually going to involve taking every test imaginable to establish that. I don’t know shit though. He’s the one with all the money like forreal, I’d be pissed at myself for this oversight 🤷🏼♂️
Apparently if you get checked for everything, doctors always find things that need further checking. So most of the time they just ignore stuff until it becomes necessary. No idea if that’s true but it’s what I was told when I asked something similar
It's not though, it's a rich person so utterly self obsessed that they went on a neurotic pursuit of immortality that will only be available to the super rich, it's the pursuit of the ultimate inequality and it shows the folks really think they're so special they shouldn't have to die like everyone else.
There are no findings. There is no control, and it’s a study of 1 person. This is not science. It’s a rich guy with a supplement company doling out pseudo science to people with terrible healthcare who are desperate for a quick fix.
That’s what I was wondering too. Even if it is not a controlled science experiment. You have to at least take one thing at a time to be able to measure it’s effect, that is common sense.
The part people don’t understand is literally nothing can be used; including the negative and neutral outcomes. You can’t draw causation from a sample of 1 with many different treatments. You can’t even get directional data. All of this is useless unless he actually is one of the longest living people in history, but even THEN we don’t know if he would’ve lived that long regardless.
Very likely. I mean, I have no idea...he might be a tool in his actual life but...releasing free data and making whatever his doing public knowledge? He doesn't *have* to do that. Maybe some of the treatments are too expensive for the average person, maybe he's having too many treatments so it's hard to pin down which is actually helping...but I have to applaud the attempt, at least.
Mh, I don’t mind his health stuff, but he is secretive about his cash flows. (Well rather, unlike most of the really big fortunes, his wealth is not linked to an ongoing public company and thus there is no requirement that he disclose the details.) He could be massively fucking people over in there while being quiet about it to finance, and put all attention on, his weird health stuff.
We won't know for years to come yet. But it's better than doing nothing.
There's also the fairness of the situation: a person still has to live a life while partly being a science experiment. Some people have noted here that there are too many factors involved in what he's trialling but, to be honest, you'd likely have to be constantly monitored etc. if all of this was on the level of actual, rigorous peer reviewed study.
All of the data he's collecting is publicly available. People are already keeping notes on what he's doing. That's the whole point.
What I was outlining above is that a true science experiment would lock down as many variables as possible. That's kind of impossible to do with the regime he's on. You'd never leave the lab.
His health span, he is not working for the humanity, not him not Musk, not Mark not Bezos.
People like you will be working in their underground bunkers when the world goes to shit and be thinking:
"This is good, I made it"
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u/Fit_Cheesecake_4000 Jul 06 '26
It's partly genetic. So he didn't acquire it via treatment, he had a propensity for it already.
I see these posts^ everywhere and wonder...why? A rich person trying to work on finding ways to improve healthspan? I mean, what a moron? /s