Can you explain more about what you did and why?

tl;dr - too much modafinil.

Yes, I have Crohn's and I do not like to take the meds or listen to the doctors. This is NOT AT ALL SOMETHING I RECOMMEND, PLEASE DO NOT ATTEMPT IT.

Crohn's is an auto-immune disease and the main class of drugs that is used to treat Crohn's like mine (long term) are called TNF inhibitors or TNF blockers.

TNF alpha triggers the production of several immune system molecules, including interleukin-1 and interleukin-6. I realized I can track this with basic inflammatory marker test, I also realized that I could use diet to impact my markers. So instead of taking what is referred to as a Biologic e.g.: Adalimumab, Certolizumab etc... I started using NIO to try and get the same effect.

I got a pill making machine, and learned how to make supplements but they were not working well enough so I knew I needed something stronger. Then I found this article: https://pubmed.ncbi.nlm.nih.gov/32311496/ I think it was on HN but I do not remember for sure. I order some modafinil and worked it into my mixture.

I do not manually create my mixtures because I do not want to know which version I am on, I want my symptoms to go away and that should be the trigger to tell me if its working. So I have a 14 vile setup with an audrino all wired into my press and based on my food diary (e.g.: nutrient intake) it decides how much of what should go into a run. e.g.: how much burdok, tumeric, serrapeptase etc...

I got something wrong and ended up adding far too much to a run of pills, I didn't realize this until i started ti see floaters in my eye and I checked to see how much moda was left and it was far less than should have been left.

Then i did some reading and a side effect of taking too much moda can be detached retnas, since I have all the symptoms: Floaters, stars and peripheral flashes I am assuming that based on the timing I now have detached retnas, I also found my mistake and essentially no matter where my markers were I was getting about 600mg of moda per day. Which is far more than should be taken. This was for about a 1 month period.

I have fixed the issue now and I have a much more sophisticated pipeline but I will have to get this fixed.

NOTE: I am not a doctor, I have no college education or anything like that. I just like bio-hacking and decided to pursue my moonshot during the pandemic. I can explain more or provide pics and vids to explain further if you like, email in profile.

I am currently writing up a 100% independent non peer reviewed case study to document everything I have done and the results.

> do not manually create my mixtures because I do not want to know which version I am on,

Double blind testing, in the "now unable to see in both eyes" sense?

LMAO, this was really funny. I did not really think of it as blind I just wanted to remove confirmation bias. I saw so much of that at goop. I have no formal training and I just learn on the fly and try to execute. I have no doubt there are better and smarter ways, I would love critical feedback here or via email.

I'm not sure I have any useful advice; I get the impression you're doing incredibly well for someone with no formal training. On the one hand you might benefit from someone with a more rigorous background helping you avoid known non-obvious risks, but on the other hand almost all such people are going to run screaming because your risk tolerance is way higher than theirs. Having a chronic condition for which the existing treatments are inadequate really sucks. I wish you luck and safety.

(For the "era of higher risk tolerance", the good old "Ignition!" by John D Clarke is a fun read from the era when the official US rocket fuels programme consisted of just lighting stuff on fire and seeing what happened)

Maybe a buddy who knows what you are taking (but doesn't tell it to you) and provides a sanity check?

All of my "buddies" kind of abandoned me pre-pandemic. Much of what was driving me here was boredom, curiosity and solitude.

The CEO/Founder at my old job used to kind of check-in on me from time to time via slack, she thought my work was cool which kind of helped me keep going once I was no longer at the company.

What in the everliving biohacking heck? I though I was leaning into things by modulating my caffeine levels based on workload (just dissolved in liquid and pouring out X mls based on need). I've thought about having a dispenser I could track metered doses with, but arionhardison here has a robotic pill press. Man, I gotta up my game now.

I wouldn't be comfortable without some sort of closed loop to be reasonably confident it was dispensing what it claims. Also helps to have the active ingredient pre-diluted so you are mechanically capped at a certain volume.

I am using pre-diluted (or mash paste) in some cases, I have no idea how else to do it. I would actually need a mechanical weighting system and that would be really hard to manage. Moda was not really a liquid mixture but more of a paste at this point and I use stops in the vile. For example. Each vile has 5 stops and each stop has a MG associated with it. There are smarter ways of doing this im sure but they involve more ME than I know how to do.

Wow. That’s... bold. One suggestion, maybe have it email your dosing to a trusted person so a human being can at least establish whether the numbers look approximately right? Although that still doesn’t cover any mechanical failures unless you’ve got a rock solid redundant closed loop setup. To be honest, the whole thing sounds ill advised, but I guess you already knew that.

< unless you’ve got a rock solid redundant closed loop setup

I do not I do not even know who I would send it to honestly. I am obsessed with this work now which is why I am expanding my provider network to other countries.

I found that things I think are "experimental" are much more common overseas probably due to a lack of regulatory controls but the result is that there are really smart people with a plethora of knowledge about these things as where my western doctors were not that knowledgeable or willing to really listen.

If you have any suggestions it would be awesome if you could email me.

I'd imagine having a strict boundary between "software thing that calculates how much you need" and "robot thing that mixes stuff together" would help, and you'd set up guardrails and unit tests on the calculation part.

Worst case you could have physical guardrails such as "can't take more than x mg per week" in the form of only supplying a certain amount of raw materials and topping off intermittently. If you run out you find out sooner instead of a month later.

I am using a 5 stop vile system right now, I don't even know if thats a thing the big boys do or not but its the only way I knew to handle things without needing to using lasers or mechanical weighting systems; both of which I have not the least bit understanding of.

Wow. I both respect you and think you’re absolutely nuts.

Since you seem to be into experimental treatment, have you ever tried helminthic treatment?

https://www.healthline.com/health/crohns-disease/hook-worms

Yes, it is one of the therapies I am currently studying as I have had success with it but it does not scale. The reason I want to do this is so that I can create a Medicare/Medicaid E2E single payer solution that provides these solutions to everyone. Even people on the lower socioeconomic rungs. The pandemic was really hard for me and I have been behaving very recklessly in terms of my own health but I have been very responsible in terms of other people health.

I was running an outpatient program for alternative therapies before I knew that you cant just do that, you need insurance and stuff. So now I am making my own Medicare/Medicaid and hope to bring all of my work into a single payer system. There is no way I can pull this off, my only hope is to attract the attention of some really smart people that will tell me why and how I am a moron and how to fix it, lol.

I would love to talk about my work with someone but i'm kind of still scared because its not in a state that is 100% ready for end users and I know everyone is just going to laugh at me, lol. Hell I laugh at me. But I worked at goop and i know more than everyone there so i'm kind of like ... fuck it. Just code / Fierce Nerd blah blah <insert-some-rationalization-here>.

Right now I am having fun exploring the world of BHM HMS modules, its far less regulated than I thought it would be which might not be a good thing, but we will see. I am going to do a "Show HN" soon but I want to publish feedback from my active patients and providers first.

As someone with autoimmune issues who rarely checks HN but is very interested in your work, do you have a newsletter I could sign up for or an email address I could reach out to to receive updates on your work?

Yes, I also am dying to just talk to anyone about my work and what I am trying to do. I am very approachable and I CRAVE the most vicious, critical feedback that I can find. You can email me (email on profile) as the newsletter stuff will not be done for at least 1 month.

Well, this was finally the thing that made me get an HN account, because I am really interested in talking with someone about that kind of stuff. I can't see an e-mail in your profile though, and as far as I understand noone can see your email you supplied in the email field, and your about section looks empty to me.

Fixed

Wait, did you co-opt the term "Medicare" to use for your project? (medicare.dev) I'm not so sure the government would like that name.

Because I am "literally" trying to recreate a better version of medicare and Medicaid. Those terms are not trademarked. If you look at Medicare.gov and Medicare.com you can see, the term is actually used a ton and the gov does not care. They care much more about bad-faith actors. One of the main benefits is I don't have to tell "regular" people what I am trying to do. This is my "moon-shot project so even if it was an issue I would not change it just to cause a big fuss and get the press from it. The bigger issue was using all of the state HHS logos, but they don't really care about that either.

In preparation for my big launch I needed to test the "do they care" theory so I literally did 2 press releases.

1 targeted directly at the D.C. area and one nationally, every contact they have made with me has been a positive interaction.

https://www.kpvi.com/news/national_news/award-winning-progra...

I paid for someone to handle this for me, really embarrassed by the title but in their defense I have won 7 health hackathons; much of that work inspired what I am doing here.

Ideally I get to a point where my systems are so much better than theres that I can promote services from .dev to .gov, I really have not thought that far ahead but I would love to discuss.

I'm not a trademark lawyer so take this as you will, but the term Medicare has been trademarked since 1957, assigned to the Executive Director of the US Army.

https://trademarks.justia.com/890/00/medicare-89000008.html

Just because you haven't run into a trademark issue yet doesn't mean that you will not in the future. And I don't think I'd want to be fighting the US Army lawyers for the naming rights.

I love your initiative, but you may want to look into the naming issue a bit further (since this is what trademarks are explicitly designed for, to prevent confusion about one product/service doing the same thing under the same name).

So, from what I was told. It has to be shown with the actual extension. For example

https://medicare.com/

This i why I use medicare.dev and medicaid.dev and NEVER just use the naked terms.

This is also what I have seen everywhere else, can you point me in the right direction on this? I really appreciate the input.

I'll send you an email shortly with some details.

Not OP, but I have done this for allergies. N. Americanus, 10-15 eggs at a time. No side effects other than an awful itch 12-36h after administration. Been great for my allergies. I've cut way down on fexofenadine. I also live with a cat and a poodle and only really feel symptoms if I literally rub my face in the cat, or groom the dog inside without a mask.

If you would ever be willing to discuss your work and hear about mine, that would be awesome. AGAIN, I AM NOT A DOCTOR. But I really love this stuff and have started to study for MCAT just so I know more and dont feel like such a moron.

That sounds horrible. Why?

Having worked in research on Crohn's this sounds wild. Why would you not take the biologics if you can afford them? Side effects? What you do is of high risk to yourself and of no value to others.

Because they do not scale and they are not required. I would love to go into more detail if you shoot me an email we can discuss.

Let's discuss in public, I think others might be interested. What do you mean by scale? Are you saying that the biologica are too expensive and you are looking for cheaper solutions? Apart from the price AFAIK they are the best known solution.

In that case hurting yourself trying to find sth. cheaper is not worth it, because: a) it is bad for you b) it doesn't help others either, since even if your special cocktail ends up working for you it will most likely not work for others.

I would focus on making tnf-a blockers cheaper, probably by circumventing or straight out ignoring the patents. This stuff is not rocket science anymore.

Have you researched the prices in other countries? Looks like in Europe its below 2k€ per month but more around 20k in the us? Whats the price in India?

FYI he replied to your comment but replied to the wrong person here:

https://news.ycombinator.com/item?id=27305183

> Let's discuss in public, I think others might be interested. What do you mean by scale? Are you saying that the biologica are too expensive and you are looking for cheaper solutions? Apart from the price AFAIK they are the best known solution. In that case hurting yourself trying to find sth. cheaper is not worth it, because: a) it is bad for you b) it doesn't help others either, since even if your special cocktail ends up working for you it will most likely not work for others.

OK, lets start with just the official stuff that they actually admit.

HUMIRA can cause serious side effects including hepatitis B infection in carriers of the virus, allergic reactions, nervous system problems, blood problems, heart failure, certain immune reactions including a lupus-like syndrome, liver problems, and new or worsening psoriasis.

Do you see a trend here? Auto-immune treatment causes more auto-iummune diseases. Thats real sus to me.

> I would focus on making tnf-a blockers cheaper, probably by circumventing or straight out ignoring the patents. This stuff is not rocket science anymore.

You are actually trained at this and I am not but I do not understand why youy would focus on alpha when beta is far more cytotoxic. Like I said, I don't have your training but that seems odd given the rate of colo rectal cancer in Crohn's patients.

Given that the entire family of drugs refers to Cytokines which is cell-death it seems a bit asinine to focus on alpha.

> Have you researched the prices in other countries? Looks like in Europe its below 2k€ per month but more around 20k in the us? Whats the price in India?

India does not sell the name brand I am familiar with; they have Zydus' Exemptia and its around $4,500 USD.

> What do you mean by scale?

I mean scale. Given that N patients have Crohn's and wish to treat themselves with Z. If Z is a finite resource what are the obstacles to Z being produced and distributed at a "scale" great enough to reach each patient, for life.

> it doesn't help others either, since even if your special cocktail ends up working for you it will most likely not work for others.

Please provide some form of empirical evidence to support this position, I was saying in private because I have actual clinical outcomes that i can report form myself and a number of others, but doing so publicly is not ethical or legal; HIPPA and all.

Can you expand a bit more on what you meant when you said you were a researcher? Possibly point me to a white paper or jupiter notebook, anything so that I may get a better understanding of your work.

I do not even know how to begin to address the reductive nature of pharma disco and production "not being rocket science" other than to state the obvious, yes it's not rocket science its bio chem.

I am sure i'm just missing something given that you work professionally in the field.

FYI: It has nothing to do w/ the price at all, even on the worst medical/medicare plan humera is only 250 for 2 viles and it was less, now it just has the extra lux tax.

HIPAA doesn't apply in your case, but it would still be impolite without asking them.

This is horrifying, but interesting. Thanks for posting.

600mg of modafinil will make you...really wired, right? Did you notice that you were super productive that month?

tl;dr - Yes and yes.

What is a DDP? I tried searching but couldn't find anything that seemed relevant

Drug Discovery Pipeline

https://www.google.com/search?q=DDP+drug+discovery+pipeline&...

You win this thread