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Comment by programmarchy | Hacker News Reader

The article mentions it’s a prion or prion-like. Kinda scary. Does our immune system not have any way to fight prions? If not then presumably vaccines wouldn’t work against them either.

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> Does our immune system not have any way to fight prions?

The normal and misfolded versions of a prion have the same protein sequence. This lack of differentiation allows the pathogenic form of prions to remain undetected by the immune system.

I understand that it’s the same sequence but the immune system doesn’t “know” about the sequence, it “knows” about the shape, no? Seems like a misfolded protein would have a different shape and receptors would bind to it differently.

You’re right, antibodies are able to recognize shape. Several early steps of the immune response, however, are independent of conformation. For example, in order to be presented, protein antigens are usually processed and chopped into small peptides, and these may be similar between both prion variants. Additionally, prion proteins can be resistant to that sort of processing.

For more info about what this commenter is talking about:

- https://en.wikipedia.org/wiki/Antigen-presenting_cell

- https://en.wikipedia.org/wiki/Major_histocompatibility_compl...

We got heat-shock proteins, they can be activated by IR light or substances such as sulforaphane. Genetically modified mice, with no heat-shock proteins, die faster when infected with certain prions.

There's a ted talk out there that supposed that people who develop als all spent time in forests/streams.

Weirdly, professional soccer players are disproportionately affected, while eg road cyclists are not: https://pubmed.ncbi.nlm.nih.gov/19267274/

Football players also have a 4x increased risk: https://tulsaworld.com/lifestyles/ask-the-doctor-pro-footbal...

But basketball players don’t - go figure.

Stephen Hawkins spent ca 1000h on boats during his college years (interesting since you mentioned that streams might bear some trigger)

The commonality between those effected may be the causative factor. If that same commonality is missing from those less effected it's even more supporting evidence.

In the set you presented. The only people who have increased risk of ALS are those that play sports on grass fields. Maybe that's the key? Grass.

"Ticks love to be in moist, low grass, so a lot of games, whether it's football, baseball, tend to happen in the morning. There may be dew on the grass and that's where a lot of ticks survive and hang out," Nesheiwat said.

https://www.cbsnews.com/newyork/news/ticks-lyme-disease-cdc-...

Lots of anecdotal evidence of ALS developing after tick bites, or more concretely infection with Borrelia Burgdorferi.

Probably a genetic component, and other enviromental factors are also involved, but the only dramatic reversals of MND I have seen documented (or heard about) have been either with IV antibiotics [1][3], or years of Mercury chelation [2]

[1] https://invisibledisabilities.org/award-recipients/2011award...

[3] https://pubmed.ncbi.nlm.nih.gov/17212618/

[2] https://www.researchgate.net/publication/317849075_Healing_o...

In the recent book "Chronic" by Dr. Stephen Philips, he's frustrated since he can only treat successfully (outcome similar to Dr. Martz), with antibiotics, about 15% of his ALS-like patients. Considering how uniformly fatal ALS diagnosis is otherwise, even considering how skewed of a sample he might get (patients that already know they are Lyme positive or suspect it), still find it astonishing.

Thanks for those links! Re antibiotics, do those end up in the spinal fluid and brain in „useful“ amounts?

Depends on the antibiotic. I believe their molecular mass has to be lower than around 500 Da for them to reliably cross the blood brain barrier. It also depend whether meningeal inflammation is present or not

I wonder if it correlates with head trauma? Soccer players head the ball, and American football players famously get lots of concussions. But I assume not basketball players or bikers.

I believe the eyes are a vector for prion diseases, at least some.

Possibly infection when being looked at for a head injury, but I assume they take decent precautions.

Another user proposed grass was the commonality between those sports, in that case grass/dirt entering the eyes?

For forest/streams, possibly water/dirt entering the eyes?

Doesn't really narrow much down though, avoid all dirt, grass, and water.

I‘m not sure I‘m buying the prion theory. Shouldn’t numbers decrease as people go outside ever less often? Prevalence of ALS seems to be increasing though: https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC6735526/

I think the Borrelia Burgdorfferi hypothesis would fit better, with Lyme disease numbers climbing in recent decades.

Yes, naively the connection looks like head impacts. The high rate of concussions in soccer is not widely appreciated, despite being over half the rate of American football (about which a lot more has been written).

https://storelli.com/blogs/the-storelli-blog/soccer-concussi....

https://journals.lww.com/cjsportsmed/Abstract/2001/10000/Con...

From the first link, here is the ranking of concussion rate:

1. Rugby (4.18/1,000 AE) 2. Ice hockey (1.20/1,000 AE) 3. American football (0.53/1,000 AE) 4. Lacrosse (0.24/1,000 AE) 5. Soccer (0.23/1,000 AE) 6. Wrestling (0.17/1,000 AE) 7. Basketball (0.13/1,000 AE) 8. Softball & field hockey (0.10/1,000 AE) 9. Baseball (0.016/1,000 AE) 10. Cheerleading (0.07/1,000 AE) 11. Volleyball (0.03/1,000 AE)

> Athletic Exposure (AE) is defined as one athlete participating in one game or practice.

Football and soccer players both. I'm pinging on agro chemicals--from the mentions earlier. I have to assume all natural fields are heavily treated (herbacide and insecticide) and that players spend or have spent their early career on natural fields. All of these chemicals are derived from "nerve agents" that mess with proteins in the central nervous system...or so it is my understanding.

And yet Lou Gehrig played baseball.

https://www.youtube.com/watch?v=UY9FdULDV6M

https://www.lymeneteurope.org/forum/viewtopic.php?t=3647&fbc...

Who knows..

Cause and effect may be reversed... Maybe in the very early stages of ALS, motor coordination skills are worse, making one not be as good a footballer, so you decide to take up a career as an accountant instead, who cycles at the weekends.

True, but that should affect basket players too, who don’t seem to be specifically predisposed to ALS.

That would be ... scary for me. The closest I could find was some limited evidence of an association between cyanobacteria blooms and odds of ALS in the surround population: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5727154/

Can you provide a link? I’m having trouble finding it.

I believe this is it. here ya go

https://www.youtube.com/watch?v=7jWi6WQQ9wo

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