Vindication for 'Lorenzo's oil'

I looked into this 2 or 3 years ago, and what I remember is that this
condition is enhanced by an inflammatory reaction, so what's going on
here is that these oils are interfering with the reaction, which is due
to arachidonic acid being stored up in the body in large amounts. It
is the inflammatory reaction which does the major damage. Note that
not all the children are "cured," we don't know what will happen to
these children when they get older, because rapeseed oil is very active
biochemically. I cited a study on this NG in which the researchers
said that the ability of erucic acid to inhibit neutrophil elastase was
incredible - nothing else known like it. Now there's a reason why your
body produces neutrophil elastase - to break down lesions. There have
been cases where people eating huge amounts of junk food, which is
often made with rapeseed oil, have been found to have heart lesions
that astounded coroners, especially considering that the people were in
their twenties. I hope this doesn't happen to these kids, of course,
but if they start dying in their 40s and 50s, it would be important to
establish if heart or other lesions played a role. And the kids who
weren't helped should be studied as well. If an animal model could be
established, I would feed one group fresh coconut oil as the only major
fat source, and give the control group the "typical American diet"
(minus food containing rapeseed oil) and see if the inflammatory
condition ever devleoped in the first place.

This is important because similar claims are made for fish oil, which
is also a very potent and dangerous substance. The only thing I've
seen in the many studies I've read is that the fish oil interferes with
arachidonic acid metabolization, which is what is driving the
"diseases." Yet the fish oil seems to only be a temporary help (many
studies are short-term, so there are only a few that may be relevant).

As an example of this point, there is the following, which is typical:

Epilepsy Behav. 2005 Jul 7; [Epub ahead of print]

Omega-3 fatty acid supplementation in patients with chronic epilepsy: A
randomized trial.

Yuen AW, Sander JW, Fluegel D, Patsalos PN, Bell GS, Johnson T, Koepp
MJ.

Department of Clinical and Experimental Epilepsy, UCL Institute of
Neurology, London, UK; National Society for Epilepsy, Chalfont St.
Peter, UK.

Animal studies and a preliminary clinical observation suggest that
nutritional supplementation with long chain omega-3 fatty acids
(omega-3 FAs) may be useful in the nonpharmacological treatment of
patients with epilepsy. Omega-3 FAs increase seizure thresholds, and
lower inflammatory mediators, which are increased in patients with
epilepsy. In this first randomized, placebo-controlled parallel group
trial of omega-3 FA supplementation with 1g eicosapentaenoic acid (EPA)
and 0.7g docosahexaenoic acid (DHA) daily, 57 patients completed a
12-week double-blind phase. Seizure frequency was reduced over the
first 6 weeks of treatment in the supplement group, but this effect was
not sustained. The supplementation produced a significant increase in
EPA and DHA concentrations and a reciprocal fall in arachidonic and
linoleic acid concentrations. No change in serum AED concentrations was
detected. Further studies are required to examine different omega-3 FA
preparations, different doses, longer treatment duration, and larger
sample sizes.

montygram said:

I looked into this 2 or 3 years ago, and what I remember is that this
condition is enhanced by an inflammatory reaction, so what's going on
here is that these oils are interfering with the reaction, which is due
to arachidonic acid being stored up in the body in large amounts. It
is the inflammatory reaction which does the major damage. Note that
not all the children are "cured," we don't know what will happen to
these children when they get older, because rapeseed oil is very active
biochemically. I cited a study on this NG in which the researchers
said that the ability of erucic acid to inhibit neutrophil elastase was
incredible - nothing else known like it. Now there's a reason why your
body produces neutrophil elastase - to break down lesions. There have
been cases where people eating huge amounts of junk food, which is
often made with rapeseed oil, have been found to have heart lesions
that astounded coroners, especially considering that the people were in
their twenties. I hope this doesn't happen to these kids, of course,
but if they start dying in their 40s and 50s, it would be important to
establish if heart or other lesions played a role. And the kids who
weren't helped should be studied as well. If an animal model could be
established, I would feed one group fresh coconut oil as the only major
fat source, and give the control group the "typical American diet"
(minus food containing rapeseed oil) and see if the inflammatory
condition ever devleoped in the first place.

This is important because similar claims are made for fish oil, which
is also a very potent and dangerous substance. The only thing I've
seen in the many studies I've read is that the fish oil interferes with
arachidonic acid metabolization, which is what is driving the
"diseases." Yet the fish oil seems to only be a temporary help (many
studies are short-term, so there are only a few that may be relevant).

As an example of this point, there is the following, which is typical:

Epilepsy Behav. 2005 Jul 7; [Epub ahead of print]

Omega-3 fatty acid supplementation in patients with chronic epilepsy: A
randomized trial.

Yuen AW, Sander JW, Fluegel D, Patsalos PN, Bell GS, Johnson T, Koepp
MJ.

Department of Clinical and Experimental Epilepsy, UCL Institute of
Neurology, London, UK; National Society for Epilepsy, Chalfont St.
Peter, UK.

Animal studies and a preliminary clinical observation suggest that
nutritional supplementation with long chain omega-3 fatty acids
(omega-3 FAs) may be useful in the nonpharmacological treatment of
patients with epilepsy. Omega-3 FAs increase seizure thresholds, and
lower inflammatory mediators, which are increased in patients with
epilepsy. In this first randomized, placebo-controlled parallel group
trial of omega-3 FA supplementation with 1g eicosapentaenoic acid (EPA)
and 0.7g docosahexaenoic acid (DHA) daily, 57 patients completed a
12-week double-blind phase. Seizure frequency was reduced over the
first 6 weeks of treatment in the supplement group, but this effect was
not sustained. The supplementation produced a significant increase in
EPA and DHA concentrations and a reciprocal fall in arachidonic and
linoleic acid concentrations. No change in serum AED concentrations was
detected. Further studies are required to examine different omega-3 FA
preparations, different doses, longer treatment duration, and larger
sample sizes.

There are two kinds of fish oil. Fresh and frozen. If fish is frozen in a home
freezer (not commercially flash-frozen) the fat turns rancid/spoiled/smelly and
should be discarded.

Ora

montygram said:

I looked into this 2 or 3 years ago, and what I remember is that this
condition is enhanced by an inflammatory reaction, so what's going on
here is that these oils are interfering with the reaction,

Which reaction?

Quoted message said:

which is due
to arachidonic acid being stored up in the body in large amounts.

It's a buildup of long chain saturated fatty acids that causes the
brain damage. Maybe you can explain how a genetic inability to break
down saturated fatty acids causes a buildup of a polyunsaturated fatty
acids, or why it only affects males if it's just due to arachidonic
acid buildup?

Quoted message said:

It
is the inflammatory reaction which does the major damage. Note that
not all the children are "cured," we don't know what will happen to
these children when they get older, because rapeseed oil is very active
biochemically.

Classic vague term, which means what exactly?

Quoted message said:

I cited a study on this NG in which the researchers
said that the ability of erucic acid to inhibit neutrophil elastase was
incredible - nothing else known like it. Now there's a reason why your
body produces neutrophil elastase - to break down lesions.

So presumably you're equally against saturated fatty acids that inhibit
collagenase?

Quoted message said:

There have
been cases where people eating huge amounts of junk food, which is
often made with rapeseed oil,

Clutching at straws.

Quoted message said:

have been found to have heart lesions
that astounded coroners, especially considering that the people were in
their twenties.

Very vague. What exactly were these lesions?

Quoted message said:

This is important because similar claims are made for fish oil, which
is also a very potent and dangerous substance. The only thing I've
seen in the many studies I've read is that the fish oil interferes with
arachidonic acid metabolization, which is what is driving the
"diseases." Yet the fish oil seems to only be a temporary help (many
studies are short-term, so there are only a few that may be relevant).

Your bias blinds you as always.

MattLB

TC said:

http://www.newsday.com/news/health/ny-hsoil124340182jul12,0,6928307.story?coll=ny-health-headlines

Vindication for 'Lorenzo's oil'
Doctors find that mix of olive and rapeseed oils can help prevent a
severe form of a rare disease affecting boys

Quoted message said:

Another perfect example of allopathic medicine's inability to grasp the
importance of naturally occurring foods and food substances, and their
almost cultist insistence that cures must be pharmaceutical or surgical
in nature.

Why hasn't the NIH's, the FDA or any of the govt agencies even tried to
look into this. It took this one doctor in this one institution to show
a bit of curiosity to get these results. You would think that the
impetus to thoroughly test any possible cures would come from the top
down. Wouldn't it be part of the NIH's mandate to ensure that every
conceivable cure be tested thoroughly to determine its effectiveness?

I remember seeing a TV programme about Lorenzo's situation and his
father's research and formulation of the treatment. At the time I only
knew the official view that "it doesn't work".

Having seen the programme it's clear that the oil mixture does exactly
what it was designed to do i.e. stop the buildup in the brain of the
long chain FA. What it doesn't do (and it would be a miracle if it did)
is reverse any existing damage. Because it can't "cure" someone who
already has the damage doctors in a very weasely way declared it was
worthless. That it stops the condition getting worse isn't good enough
apparently.

MattLB

Quoted message said:

Doctors find that mix of olive and rapeseed oils can help prevent a
severe form of a rare disease affecting boys

Quoted message said:

Another perfect example of allopathic medicine's inability to grasp the
importance of naturally occurring foods and food substances, and their
almost cultist insistence that cures must be pharmaceutical or surgical
in nature.

Before makeing quick conclusions about "naturally occurring", the
component that is supposed to work here is euric acid contained in
rapeseed oil, that "in other news" is rather atherogenic. (that is why
it was "reingeneered" to canola oil by canadian scientists).

All in all I would not call vegetable rapeseed oil a healthy nor
naturally occuuring....

Mirek