There are a lot of pathogens that cause long term, sometimes minor or sometimes major ailments - mono, lyme disease, HPV, etc. There may be many many more we don't know about. Could we identify them by blending up a dead persons brain, then DNA sequencing the pulp? Any non-human DNA can then be investigated, and with data from enough people we might start to see patterns, like "this particular non-human genome causes alzheimer's" or "this causes lung cancer".
Seems doable (difficult but doable) and a valuable idea if you have the permit from the family. Death changes everything in no time so we would need to use really fresh samples and filter what is expected to be in the body (lots of inner flora that would contaminate everything) from what is new, shouldn't be here and is interesting.
I won't try to do a TL;DR, but from reading the full article, it seems like he is doing kind of fine right now. He is still sick but he is currently writing a thesis. The article has a really positive vibe to it even though it is a really rare disease.
The BBB is a part of capillary walls and so there really isn’t a good way to “manually” inject beyond it. That said, there are current trials ongoing to temporarily disrupt the BBB using high intensity focused ultrasound, allowing injected chemotherapy to cross and help treat brain cancer.
UK reader here .. I'm genuinely interested in how the author of this article would afford the medical expenses for this treatment. I know about the insurance, but I'd imagine that this wouldn't cover everything?
Once you hit your out of pocket maximum, insurance covers everything by law. My out of pocket maximum is $5,000 and I don't have a particularly good plan. What that means is that even in the most catastrophic of medical events, I wouldn't pay more than $5k in a year. I could receive $2 million worth of advanced cancer treatments and only pay $5,000.
> Every now and then, I reach out to someone I find on the internet with my affliction but they never respond.
Probably because they're dead. There's no auto-reply for that. It would be interesting if that was possible to affix to personas, optionally. If there was an identity system that could notify forums and emailers and messengers that response isn't possible. Some way to have a resolution.
in the first shared house I lived in, my flat mate (ex-partner of the holder of the lease but in the same dwelling... it was awkward) was acting erratically in the first couple of weeks. It was kind of assumed the break up was getting to him.
One night I heard him cursing outside my door (not at me, just generally). The next day he apologized and said things were overwhelming him at times.
Within a day or two they admitted him to the hospital our house actually backed onto; I can't quite remember why, I think he may have blacked out at the house while I was at work.
They put out the word for his father to fly into the country, but he passed within a day.
It was fungal meningitis; something I didn't even know existed, but apparently can be caused by various forms. I don't know if he had a weakened immune system, but it shook me that someone just living in an urban environment in a wealthy country could simply contract this and pass within days.
It's actually less terrifying to me than the idea that scraping your elbow could have something as awful as a fungal infection crossing the blood brain barrier.
Though, to be fair, there are at least one or two places where the brain is not behind the BBB.
So the real question is... If there are only 120 cases of this disease worldwide... Where did it come from originally, and how does it spread from person to person.
In which case... where in the environment does it grow? If it's all growing in a cave somewhere, we can find it and disinfect it or at least put up a fence.
The thing about it being found mostly in immunocompromised people suggests it could be a fairly common and widespread organism but most people shrug it off.
I recall hearing a hypothesis that one consequence of global warming might be an uptick in opportunistic fungal infections. Warm-bloodedness might be largely an adaptation to make the human body uninhibitable by environmental pathogens, but as warming pushes tropical areas to long sustained stretches of temperatures above 98.6F, it acts a selective pressure for organisms to evolve such that they can now thrive in the body.
> If there are only 120 cases of this disease worldwide...
120 known cases. Some of the afflicted likely died without ever seeing a doctor, and given the difficult diagnosis, others may have died without the cause ever being known.
> Where did it come from originally, and how does it spread from person to person.
> When we started going downhill on the loose gravel, my back wheel slid out from under me and I was thrown from my bike, scraping up my arm and elbow pretty badly.
If the drugs can't enter due to the BBB isn't the only chance to prime his immune system to handle it? Maybe another use case for specialized mRNA vaccines?
They can and do put drugs directly on the other side of the barrier. Intrathecal administration typically uses an infusion pump to put drugs directly into the cerebrospinal fluid. Pain meds are a common use case, as well as some chemotherapy drugs. It's a somewhat risky MOA, as the likely path of infection will proceed immediately to the life threatening stage, which means not many drugs are approved by this route.
The blood brain barrier is the walls of the arteries. Perhaps you can "inject" something in the interstitial fluid but I imagine the volume would be tiny and fluid motion very slow.
