2 ms·

I do know one success story, so I should share it. A programmer and chemist who moved to my warm, sunny coastal city to die with a severe case of progressive, n

I do know one success story, so I should share it. A programmer and chemist who moved to my warm, sunny coastal city to die with a severe case of progressive, not RR MS. That was more than twenty years ago. He had been told he probably only had months to live. His disease has been halted for more than two decades, but much vision and some movement hasn't returned since nerve damage tends to be permanent. I've known him for maybe fifteen years, and he's in better shape now than ever. He swears antifungal treatments are the reason, but he also gets several hours of direct sun every day. His fungal beliefs have altered his diet some, but I don't think he's doing anything very unusual there. Re sun: melanin is known to be good at killing viruses (etc, etc) so the Epstein-Barr connection might be relevant here. We've learned revolutionary things about melanin in the last two decades, which hasn't reached clinical practice at all. Such a delay is par for the course. This is speculation of course (and his speculation varies from mine) but since it's the one case of definite results that have held for decades, I thought I should report it.

mush_room 4y ago
It's funny because pretty much the only thing the doctor told me when I got diagnosed was not to smoke. About the fungal stuff, I'm reminded the common saying (around MS circles at least), that "everybody's MS is different". I'm not sure who much I agree with that, given that we now have solid evidence of a link with EB virus, but it might be that along the chain of factors some people have "fungal infection", others "parasites" (as I've recently heard), etc. Could you say how long it's been since he moved and where? Several people here are talking about the important of sunlight, and I know that to be true for me, I always feel much better with sun - not vitamin D - sun and sunlight, and I'm seriously thinking about the possibility of a move, even though I have no clue how I would practically achieve it atm.
- alexmanuel27 4y ago
  Moving to somewhere sunnier is certainly something you can do, and gives you a sense of control. I believe it so much that I am doing the same.
- Nomentatus 4y ago
  I've removed my mention of a study saying smoking helped, more recent research contradicts it. He moved at least twenty years ago, to a sunny but more northern west coast city and has remained here since. (I wasn't being as clear as I thought. I've now edited my post, thanks!) It's reasonable to suppose that some environmental factors might be involved, but vary. After all, Epstein-Barr is at best a necessary condition for MS, it's very far from sufficient. Logically it can't be the whole story or nearly everyone would have MS. The coast is useful because the sun is kinder, more filtered. Even if UVB turns out to be necessary, which I don't know of course, it's nice not to worry too much about the time of day you're out. It might be worth noting that a century ago when sun therapy was in vogue, they recommended the three hours after sunrise, only. But they also put resorts in mountains, esp in Europe, to get a longer season of effective full spectrum light.
  - hirvi74 4y ago
    > Logically it can't be the whole story or nearly everyone would have MS. Sure, but I think some people are just more susceptible to certain things. I think it would more likely that everyone with <insert right genetic lottery> who gets EB will more than likely develop MS. A majority of people that smoke tobacco will not develop lung cancer, but a majority of people that have lung cancer smoked tobacco.
maksimur 4y ago
> Re sun: melanin is known to be good at killing viruses (etc, etc) so the Epstein-Barr connection might be relevant here. We've learned revolutionary things about melanin in the last two decades, which hasn't reached clinical practice at all. Such a delay is par for the course. Do you mean melatonin?
- BenjiWiebe 4y ago
  Melanin comes from sun exposure, no? Pretty sure he meant melanin.
- Nomentatus 4y ago
  We have indeed learned amazing things about melatonin and light exposure and iprgcs over the last four decades, and I think that's very important, too. So I'm glad you've mentioned it: a natural night with extremely consistent start and stop times (or following the seasons strictly, which is better) absolute darkness (except red light is okay) and nine hours of it is a very good thing for health - mental and physical. But yup, I meant melanin, the more recent outpouring of research there is amazing. Melatonin is an amazing antioxidant, just amazing, and as a hormone it initiates processes that fight illness at night, including pathogens, but I don't know of it having any direct action against pathogens.
emmelaich 4y ago
This makes sense because the incidence of MS is much larger as you move away from the equator; the incidence at 20deg is half that of 60deg away. Could that explain the higher incidence among females too? Do males spend more time outdoors?
- Nomentatus 4y ago
  Interesting thought; maybe however women are more prone to illness throughout life, sadly.
cromd 4y ago
Interesting that some people can turn it around. I believe the benefits of sun are maybe poorly understood for now, and I maybe spent too many decades hiding from the sun entirely, as a fair-skinned person, tracking the UV index a little too closely. That said, I've also read that heat can make MS symptoms worse. I anecdotally get a bit weird in the heat. So, I thought maybe I'd stick to colder, cloudier places. But maybe that's wrong, and I should get a sunny, not-so-hot place. Maybe that only leaves California, or I can stop wearing coats in winter to get some rays at a low temperature :)

mush_room 4y ago

It's funny because pretty much the only thing the doctor told me when I got diagnosed was not to smoke. About the fungal stuff, I'm reminded the common saying (around MS circles at least), that "everybody's MS is different". I'm not sure who much I agree with that, given that we now have solid evidence of a link with EB virus, but it might be that along the chain of factors some people have "fungal infection", others "parasites" (as I've recently heard), etc. Could you say how long it's been since he moved and where? Several people here are talking about the important of sunlight, and I know that to be true for me, I always feel much better with sun - not vitamin D - sun and sunlight, and I'm seriously thinking about the possibility of a move, even though I have no clue how I would practically achieve it atm.

alexmanuel27 4y ago
Moving to somewhere sunnier is certainly something you can do, and gives you a sense of control. I believe it so much that I am doing the same.
Nomentatus 4y ago
I've removed my mention of a study saying smoking helped, more recent research contradicts it. He moved at least twenty years ago, to a sunny but more northern west coast city and has remained here since. (I wasn't being as clear as I thought. I've now edited my post, thanks!) It's reasonable to suppose that some environmental factors might be involved, but vary. After all, Epstein-Barr is at best a necessary condition for MS, it's very far from sufficient. Logically it can't be the whole story or nearly everyone would have MS. The coast is useful because the sun is kinder, more filtered. Even if UVB turns out to be necessary, which I don't know of course, it's nice not to worry too much about the time of day you're out. It might be worth noting that a century ago when sun therapy was in vogue, they recommended the three hours after sunrise, only. But they also put resorts in mountains, esp in Europe, to get a longer season of effective full spectrum light.
- hirvi74 4y ago
  > Logically it can't be the whole story or nearly everyone would have MS. Sure, but I think some people are just more susceptible to certain things. I think it would more likely that everyone with <insert right genetic lottery> who gets EB will more than likely develop MS. A majority of people that smoke tobacco will not develop lung cancer, but a majority of people that have lung cancer smoked tobacco.

maksimur 4y ago

> Re sun: melanin is known to be good at killing viruses (etc, etc) so the Epstein-Barr connection might be relevant here. We've learned revolutionary things about melanin in the last two decades, which hasn't reached clinical practice at all. Such a delay is par for the course. Do you mean melatonin?

BenjiWiebe 4y ago
Melanin comes from sun exposure, no? Pretty sure he meant melanin.
Nomentatus 4y ago
We have indeed learned amazing things about melatonin and light exposure and iprgcs over the last four decades, and I think that's very important, too. So I'm glad you've mentioned it: a natural night with extremely consistent start and stop times (or following the seasons strictly, which is better) absolute darkness (except red light is okay) and nine hours of it is a very good thing for health - mental and physical. But yup, I meant melanin, the more recent outpouring of research there is amazing. Melatonin is an amazing antioxidant, just amazing, and as a hormone it initiates processes that fight illness at night, including pathogens, but I don't know of it having any direct action against pathogens.

emmelaich 4y ago

This makes sense because the incidence of MS is much larger as you move away from the equator; the incidence at 20deg is half that of 60deg away. Could that explain the higher incidence among females too? Do males spend more time outdoors?

Nomentatus 4y ago
Interesting thought; maybe however women are more prone to illness throughout life, sadly.

cromd 4y ago

Interesting that some people can turn it around. I believe the benefits of sun are maybe poorly understood for now, and I maybe spent too many decades hiding from the sun entirely, as a fair-skinned person, tracking the UV index a little too closely. That said, I've also read that heat can make MS symptoms worse. I anecdotally get a bit weird in the heat. So, I thought maybe I'd stick to colder, cloudier places. But maybe that's wrong, and I should get a sunny, not-so-hot place. Maybe that only leaves California, or I can stop wearing coats in winter to get some rays at a low temperature :)