Can you explain more about what you did and why?
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.
Since you seem to be into experimental treatment, have you ever tried helminthic treatment?
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.
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.
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).
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 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 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.
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.
Double blind testing, in the "now unable to see in both eyes" sense?
(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)
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.
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?
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.