Published on January 26, 2025 7:00 PM GMT
(dump of highish agency ideas to suffer less)
Disclaimer: Not medical advice, don’t be stupid. Possibly only applicable to bio autists (gf wants me to impress that unless you know enough about bio you should not do this!!). This post does NOT recommend trying anything illegal.
Note: I did all of this and got diagnosed the normal way through the normal system by getting referred to a cardiologist so maybe it’s all useless, idk. Do not discount the potential intuition/wisdom of some specialists!! But also do not entirely trust them, they miss things. Anyway, this is more applicable to dysautonomia type symptoms than what mine ultimately ended up (genetic).
START TRACKING YOUR SYMPTOMS
Have a signal chat to yourself or similar. Make sure its very low friction and you've impressed on yourself the importance of tracking symptoms
Also track: hormonal cycle, biometrics if relevant (apple watch, etc), and anything else that might be relevant
You can do more than you think you can- build yourself tools and monitoring devices if you can.
Try an elimination diet! Lots of people develop weird food sensitivities later in life. In general make sure to consider that “normal” things (ie birth control) might be causing your symptoms.
Sign up for clinical trials for free data at clinicaltrials.gov or on university/hospital disease-specific pages. This is often faster than going through the system, AND it's free. Not sure why more people don't do this. (look for biobanks as well!)
Look for people with similar clusters of symptoms (claude/gpt* may be useful for finding search terms/labels) and the things they found worked for them (like low dose naltrexone for some autoimmune conditions). Reddit and private forums are good here. Look into any research that may have been done on google scholar etc. Leverage AI heavily for expanding out ideas. Some % of chronically ill people go on to do bio grads and stuff and are nice and willing to help their community, you can try finding and talking to them. I’ve had a lot of success (had genetic testing sped up, lots of moral support, someone with EXTENSIVE bio knowledge reviewing my imaging and symptoms, opinions of several nurses, getting nepo’d into specialist clinics) wwith connecting to people by complaining on twitter about my stuff, but YMMV.
Note: Claude and o1 are pretty bad at dealing with acute symptoms or anything that requires Reasoning and should not be trusted, but can surface interesting rare chronic things.
See what abnormal biomarkers are associated with your condition (google scholar) (if you have a label for it, search with that, or from your labs, or infer from symptoms (ie adrenal rushes, unreasonable stress, tachycardia -> cortisol/adrenaline/HPA axis issue)), and find compounds that modulate them accordingly (check if others have done this successfully first on reddit etc).
Overseas pharmacies exist. Many things are not OTC in the US but are in other countries. One can get their desired compound within like 2 weeks and for a reasonable price. If one were to do this, they would need to make sure to look into the compounds they are ordering very carefully, as they may make certain pre-existing conditions worse, have bad interactions, or have delicate dosing requirements (one would need to look up the pharmacokinetics of anything they take, and titrate up to threshold doses!), or toxicity if used long-term. Some may take a while to properly kick in. NOTE THAT THIS WARNING APPLIES TO ALL SUPPLEMENTS. Ordering from overseas pharmacies is not legal and this is included just as an example of the limits of agency.
Mitigate worst case outcomes- ie if it’s something degenerative, get on something that slows development ASAP. even if it’s just a little. Like take immune regulating compounds for immune conditions (careful that they do not amplify it!!!) because damage compounds.
WHEN DOING THE ABOVE TWO THINGS, BE VERY CAREFUL ABOUT KEEPING TRACK OF ALL POSSIBLE CAUSES, AND DO NOT DO INTERVENTIONS THAT COULD MAKE ONE BETTER BUT ANOTHER DRASTICALLY WORSE UNTIL YOU'VE RULED IT OUT. Treating yourself carries inherent danger. Do not take it lightly.
But also, inaction is action, and if you have Quantitative evidence that something is very likely to be a root cause of your symptoms and they are ACUTE or degenerative, sometimes, very high caution independent action is warranted.
Concierge doctors exist and are nice if you can afford one.
Scope out the medical opportunities near you. See what hospitals are around, what types they are, what private clinics exist, what universities are around, etc. If you go through the medical system, you need to be booking appointments as SOON as possible (you can always cancel and wait times are long), vetting practitioners beforehand for competency by cyberstalking, using medical research as a proxy for intelligence/ability to do good work, etc. Private clinics are usually better re wait times (they can move their schedules around for you if you tell them you're paying out of pocket!! private clinics hate dealing with insurance), large hospitals have more access to testing (ie capacity to run biopsies). There are services that help u find next-day appointments like zocdoc and onemedical. Use those to get labs ordered, referrals (specialists need referrals!!! Unless you call them up personally and are desperate in their direction and offer to pay in cash so the insurance companies don't take their cut then they are willing to be flexible (this strategy is also applicable to any private clinic)) asap. Nurse practitioners are hit or miss but some of them are VERY competent esp with chronic health stuff. There are probably directories of competent chronic health medical professionals, if you cant find them ASK AROUND in location-specific forums, ask your friends, ask your social media groups, etc. Location does not have to be a limiter, sometimes it’s worth it to fly out to the most specialized clinic you can for sufficiently severe or rare things. Functional medicine clinics/practitioners tend to be much better at dealing with chronic health issues, but will try to upsell you supplements and chiropractice.
Adopt dangerous professional voice if you’re not being treated right by the medical system. Have them put refusals in writing (no one wants to be liable). If you’re a woman, having a man with you helps because misogyny still exists.
You can change doctors if you don’t like yours.
laboratoryassist, ownyourlabs, and other labcorp/quest wrappers exist to order your own blood tests
Figure out how your insurance works and take actions accordingly. If you think you’re going to spend a Lot on healthcare, try to hit your out of pocket max for the year and then just spend recklessly. Example: If you’re having acute symptoms, you can get a bunch of testing done immediately at the ER.
Radiopaedia, ecgpedia, etc exist if you want to double check imaging for things that are very obviously wrong
Appendix
How to do supplements:
- Do not buy supps on Amazon (fraud, reselling, adulteration)CVS is good because they test their supps for heavy metalsCheck consumerlab for brand analysisAlways check the bioavailability of the specific form of the drug you’re taking and adjust dose accordingly. you can also take things to increase bioavailability if it is usually too low for effects (relevant with curcumin). method of absorption matters too (sublingual vs oral)Check pharmacokinetics of the compound to figure out dosing schedules, whether to take with water or meal, etc. Claude gives decent advice here but check the databases!! This is very important.Be cautious with compounds that are metabolized in the liver- slowly ramp up and figure out your subj. threshold dose and don’t take much more than thatSupplement dosages are unregulated and they are often significantly overdosed (prime example being melatonin)Check interactions of all supps you takeDose fat soluble, low turnover, slow metabolized supps more sporadically (some drugs have an obvious physical tell for when your body has reached capacity (b12, iodine, niacin))
Discuss
