I’ve procured substantial quantities of gray market (not illegal yet) medication ‘for research purposes’ and can probably safely say that it has indeed saved my life. While the medication was purchased the protocol was of my own design. Like many people with chronic conditions (LongCovid/Chronic Fatigue) I’ve long given up on doctors and only use them when I have to get a prescription. A lot of what I used are the human encoded bio regulator peptides mainly studied by Prof Khavinson and largely ignored in the West. Bacteriophages are another interesting medical technique ignored by the west. These days I think GLP-1A (ozempic) etc also help with auto-immune conditions so I’m confident there will be a lot of off label use at lower doses and I’m sure there already is. I haven’t had time to watch the video yet but Low Dose Naltrexone is a perfect case study of an effective medication dying due to lack of funding and being revived by patient groups. Naltrexone is a generic so there is no money in making it a treatment.
For a few years there was a shortage of modafinil so I looked into making it myself. It’s not too hard, totally doable. As technology improves it’ll get even easier. Especially going from a low yield batch chemistry to a higher yield lab on a chip continuous chemistry. For more complex stuff there are micro-bioreactors to use recombinant DNA. It’s pretty cost effective to send off samples for analysis. I’m not confident enough to use any of my own synthesized meds, at this stage it’s just a hobby.
Procuring a custom batch of meds from Asia can be as cheep as $10K so patient groups sometimes organize group buys. Because the turnaround is so quick and there are plenty of volunteers the patient groups can get results much faster than the medical researchers.
> Bacteriophages are another interesting medical technique ignored by the west.
Phage are interesting, but they're ignored because they're worse than antibiotics by nearly every measure. They're _very_ narrow spectrum. They're immunogenic. Phage have found ex vivo applications, such as treating meat to prevent listeria.
Source: worked in an evolutionary bio lab for two years culturing and cloning phage.
I did wonder if cheap and ubiquitous casual DNA sequencing could tilt things in the phages favor. So perhaps it’s a matter of time. But beyond that I don’t know the tradeoffs beyond a few YouTube videos.
I have a loved one who is struggling with drug shortages. Unfortunately it's a schedule 2 drug, so I'm sure attempting to manufacture my own would be very illegal. I wouldn't be surprised if we're in a transition period where the tech is becoming accessible, but isn't yet heavily regulated. Both the DEA and pharmaceutical companies have an interest in stopping people from making their own drugs at home.
Modafinil 100mg morning and Amitriptyline 75mg at night helps with dysautonomia, though modafinil can exacerbate gut issues. Using weaker ligands helps with working with the natural cycles of the body instead of against it. Low Dose Naltrexone. A fairly high dose of TUDCA and DIM. DIM (3,3'-Diindolylmethane) is a relatively non-toxic selective AhR modulator. Ipamorelin + ModGRF. VIP peptide. A fairly low dose Semaglutide of 0.5mg after a year on it where I started at 0.05mg - not sure if the dose has plateaued, we will see. Elimination of sugar from diet. Resistance exercise and no aerobic exercise due to PEM. I have a strong genetic predisposition (hEDS) so I was impacted by Long Covid worse than most.
What is the mechanism of Naltrexone in reducing fatigue? It seems like fatigue and sleepiness is a common side effect.
I had really high hopes for modafinil in treating my long-life fatigue issues as well as helping with my severe ADHD since I can't tolerate or access traditional stimulant medication for it rignt now. It was amazing for a week or so but quickly stopped having an effect unless I took 400mg a day, and the side effects of that dose were also not tolerable for me.
I think it's important to offset the modafinil effects with something like amitriptyline. Taking only a stimulant will exacerbate dysautonomia and you'll be fighting a losing battle against your bodies corrective mechanisms.
Low Dose Naltrexone works differently to Naltrexone in that the temporary block of the opioid receptor causes a paradoxical natural overreaction to the absence.
The mechanism of action is very complex but it appears that the inflammation -> neurotransmitter dysfunction (e.g. dopamine dysregulation)-> immune system dysfunction -> inflammation cycle creates a bit of a trap that people can get stuck in. Taking enough of the right meds on this cycle does appear to help people break out of that trap.
Naltrexone is a very weird drug, as it's both an agonist and antagonist of it's target receptor (but mostly an antagonist). As a result paradoxical effects are to be expected.
For a few years there was a shortage of modafinil so I looked into making it myself. It’s not too hard, totally doable. As technology improves it’ll get even easier. Especially going from a low yield batch chemistry to a higher yield lab on a chip continuous chemistry. For more complex stuff there are micro-bioreactors to use recombinant DNA. It’s pretty cost effective to send off samples for analysis. I’m not confident enough to use any of my own synthesized meds, at this stage it’s just a hobby.
Procuring a custom batch of meds from Asia can be as cheep as $10K so patient groups sometimes organize group buys. Because the turnaround is so quick and there are plenty of volunteers the patient groups can get results much faster than the medical researchers.