Bill's Brainstorming Page on
whereas: I've been diagnosed with MS.
whereas: Lorenzo's Oil is a cool story of a Layman
learning medicine and curing a demyelinating disease...
whereas: Multiple Sclerosis is also a demyelinating
whereas: I'm starting to bore other people with
my weekly theory of what MS is and how it might be cured...
whereas: I got a call today from a genetic researcher
and it got me thinking...
whereas: I read an article this week that weirdly
suggests MS might be a Sexually transmitted disease (even thoug
virgins get it, and 99% of couples don't...)
wheras: The internet is an especially powerful medium
for collaboration and group problem solving...
whereas: I actually find cytokines and fat saturation
kind of interesting...
whereas: I have web space for work anyways...
I hereby declare this brainstorming session on
MS: defining it, curing it... open:
What is MS
How might it be
What can patients do?
Notes and discussion on handling it until its cured...
-Jan 15. I did the
page of reading on LDN and MS
-October 15 2003, This page actually gets lots of hits, so I thought
I'd better update it...
-Aug 9,2003...a revamp of the page...See the multiple theories
under 'how might if be cured'
-April 4,2003...more work on my ms
-Jan 16,2003...I put up my new
- Dec 1, 2002 OK I got a discussion forum up and
to check it out...
- September 28 2002, and this page is 4 days old, and 2 hrs
Over time these topics will probably each
contain a disussion area, and databass of info. For now they're
just some random thoughts on MS I've had, perhaps to start the discussion...
What is MS ?
An evolving definition:
A disease that attacks your central nervous system
(This is the brain and the top part of the spine).
It strips the myelin off of the 'wires', (like
the rubber coating on electric wires) and eventually or sometimes
it causes permanent damage to the axons that lie underneath the
myelin's protective coating. This is nervous system damage and can
result in everything from mildly numb fingers, blindness, to being
Remember though, the brain can reorganize
to do the same tasks in new areas,
so MS is a disease where the blind learn to see
again, and those who can't walk, walk again....
Another way I've heard it described is a 'rash on the
nervous system'. This allows one to think about the white spots
of inflammation that show up on an MRI as transitory things...(neurologists
have now told me this is an obselete idea) They may not even be
there on the next imaging session...?
Researchers find it interesting that
MS is confined to the central nervous system. Often it is seen as
a problem with the blood-brain barrier where things are getting through that
It is also described as an auto-immune
disease, where the messages get confused, and the immune system
starts attacking itself.
How bad is it?
Probably a lot more people have MS
than are diagnosed. Up to 5% of people who get MRI's for
non MS reasons turn out to have lesions. The important question
is 'are the lesions in a place that does damage?'
The good news is that about 75% of
with MS don't have to ever use a weelchair. A German
study suggested as few as 2% of people have their lives shortened
by the disease, most people now refer to it as non-fatal.
On the downside 50% of patients diagnosed
with relapsing remitting MS will go secondary progressive within 10
years. Secondary and Primary progressive MS are serious, life-changing
I'm pretty impressed with how intelligent these people still are
In the new millenium we have some
positive role models... The character of the
president of the U.S. on the show '
' has an undisclosed case of MS...and in reality the Talk
show host Montel
Williams has MS.
2003 gave the MS group a new poster person in
Otherwise it's considered
a pretty bad thing...in harsh cases, 'the most dreadful of diseases'
and it makes sense to try and cure it.
Some other important, random facts I've been putting
-Cytokines, the messangers of the immune system,
could be the real factor. Demylenation may just be a
symptom of imbalances in the cytokine ecology of
the immune system. For example, when we boost the
amount of naturally occuring interferon in the system,
it seems to help. Only a few years ago an experiment with interferon
gamma (not interferon beta, which is the common cure...) went awry,
(made symptoms worse) so we know of a delicate balance between
forces in this system where some things are 'engines' and some things
-EAE is a kind of demyelinating disease that can
be generated in lab animals by injecting a bit of Myelin
from another animal into them. It gives similar
symptoms to MS, so it is the 'animal model' that is used in research.
It can be easily cured though...? EAE standsfor some kind of experimental
encephalitis. So MS has some weird relationship to encephalitis...they
might both be inflammations of the nervous system...?
-MS occurs mostly in areas near the poles. (except
If you were raised in the tropics in
the early part of your life you probably won't get MS.
-perhaps getting a toxin (in my case an environmental
toxin in early life is suspected, as several kids from
the neighbourhood have gotten sick) combined with
a genetic predisposition to get the disease are the factors...
-When the british showed up in Japan and other island
nations the incidence of MS went up.
( this week a madman in England proposed that this
made MS a sexually transmitted disease, even
though many virgins get it, and 99% of married
people with it do not 'give it' to their mates...)
How might MS be cured
I don't really know. I'm just a patient but this week's theory?
The cytokine theory
The Diet theory
Foreign Body rejection
The vitamin D/ultraviolet theory
The iron theory...
The testosterone theory
The water cure
The lipid theory
The toxin or virus theory
The LDN work
CytoKines: Medicines like Interferon are getting involved
in the immune system's messages.
We know that taking this medicine makes MS attacks
less common. Injecting interferon 3 times a week seems to be the best
treatment Big Science, has to offer right now. They charge a ridiculous
amount for it though, and here in Canada, where I get it almost free, I
feel guilty evey time I read about someone else who doesn't get helped
correctly in health care. Learning how the cytokine
messages work is a big goal of researchers on MS
as well as other other immune diseases...Right now
it's only one step up from guessing...Since I work
with computer visualization, one of the things I'm interested in
is trying to visualise the cytokines in the immune system in small
we see a miraculous cure for rhumatoid arthritis.
This is another inflammatory
disease. The cure is a cytokine. Here's how it
: (check out
the cool flash animations on the right...)
One of the strange spinoffs from this is that a
small percentage of patients might get MS from taking embrel!So
Tumor Necrosis Factor is one of the cytokines that need to be kept
Stopping eating animal
fats might be the thing. Dr. Swank was a pioneer in treating MS patients
a low fat diet. It's still unclear to me as to whether his diet
would create just as many health benefits in a group of people without
Perhaps something like EAE is caused by trace
amounts of Myelin in the animal fats? (conjecture)When an animal's myelin
basic protein is re-introduced to the same species the animal gets EAE.
Maybe what the British brought to the various islands, was a new kind
of diet heavy in animal fats... This fat might have trace amounts
of myelin that over time cause a reaction to occur....??
The problem with this theory is that cannibals
don't get EAE. They get Creuzfeld-Jacobs(spelling?) disease, which is
more like mad cow. Prions.
A study I read about in
Norway between the coastal fish eating people and the inland meat
eating people showed a far hight incidence of MS amongst the inland
It seems like cultures like
Japan and the Inuit of Canada that have mostly fish diets don't
much MS. Of course the countries around the
equator also have very litttle MS so perhaps heat tolerance,
and low fat diets are linked?
When I think
of lactose intolerance and where it exists, it seems to be in
places without MS.
I was a
very big milk drinker for my childhood and teen years.... perhaps
I'll cut that out...
Some data that has made me question
this, is from Australia: Apparently there are 7 times more people with
MS in the deep south(further from the equator) than in the north. This
is great evidence for
Vitamin D, or ultraviolet, but the fact that these people have the
same diet, and same medical system, seems to negate the diet of equatorial
people as a factor?
Foreign Body Rejection
It appears that when women with MS get pregnant
their MS symptoms take a holiday. In order to raise a foreign being
within their bodies, women's immune systems change. Their ability
to reject foreign bodies is temporarily turned off.
This suggests to me that MS is an ongoing
attempt by the body to reject some kind of toxin. Or the body
got so good at rejecting toxins that, even after they were gone, it
Sometimes I think about it as
an inflamed tissue, like the red that surrounds a sliver...but other
times I think of it as 'the sliver is gone but the inflammation still
Probably MS is a name for a number
of illnesses and causes, and the cytokine ecology of each person
is a little different... This all makes for a complex thing to describe
and deal with...
A vitamin D/Ultraviolet Theory
This one creates great contraversy, especially
amongst those who live in sunny areas.
MS is weird because it's becoming clear that while heat makes things
much worse in terms of symptoms,
(I go nearly blind) sunlight seems to help somehow. There are definitely
a lot fewer people with MS closer to the equator, and it's not just about
poor health care in tropical areas. A study that made headlines
in summer 2003 suggested that animals with EAE could even be cured
It's unclear whether it's vitamin D or
ultraviolet that is beneficial, just taking vitamin D in pill form
may not be enough.
It's unclear as to whether eskimos don't
get much ms because of genetics, or because they eat a lot of fish that's
high in vitamin D.
I spend a lot of time in my unheated
pool, in cold water, basking in the sun in summer.
An Iron Deposit theory
I read an
, that suggest that the reason interferon helps people with MS is
"toxic effect of pathologic iron deposits found in gray-matter
structures of MS patients."
proclaiming it as 'first time discovery'...
Low Dose Naltrexone
really a theory of the week. It's stuck in my head for several months,
and now I've
made a seperate
page of reading on LDN and MS
this is coming from left field, as a friend who's been studying immunology
years hadn't ever heard of a relationship between endorphins and
the immune system.
But, when solving problems, you can proceed
incrementally, or make intuitive leaps and test them. I'd like to
believe that incrementalism is the more efficient way, but I don't. Intuitions
(and the ability to test them using rigour) are what humans have over computers
in solving problems.
Bihari has made such a leap. Let's test it.
Medical Imaging seems like an
important future direction here. Could technologies be evolved
that are capable of scanning the molecules of the body for impurities?
We've only had the ability to use MRI scans to detect MS for a short
time, how long are we from a hand-held imaging device that can give
daily feedback on the state of the immune system etc. ??
Notes and discussion on handling it until its cured...
One piece of
advice I've heard from patients is 'don't think about it much'...so
this page will only get updated once in a while...a general minimalization,
'like being allergic to seafood or something' is in order the rest
of the time.
thinking seems to be pretty key. When I improvise on the piano,
I do get the odd wave of weakness, and I think this is when my improvisations
are too dark and negative sounding, or lacking in direction. Perhaps
these are 'cascading seratonin' chemicals that cause other chemicals
to react. The fact that every thought is a chemical reaction seems very
important, and not really understood...
Simply bringing ambitiousness
of any design back a notch in every creative act seems to solve
dark feelings...ie: don't work on such hard problems!
is big for me, I can't handle summer any more....you???
Lately I haven't been sleeping too well, is this MS
or the fact I quit smoking? The other day I got horrible hip pain
for a week. It was like all the anxiety in my body went to my hip
and finally culminated in a big zit that burst there...
: ) Dont' ask me...
I guess my biggest question is 'how do I handle
my immune system'. One person tells me to take echinecea and build
it up, and another says I should increase the amount of stress in
my life, and never let my immune system get so strong that it attacks
itself... what do you think?
What's your experience with MS. Check out the
MS discussion forum
on this site...