Re: Essential fatty acids+coconut+mct oil PS

[Guest guest]

Mike, You may be aware that another " oil " known as triheptanoin or

C7 is being studied in CPT patients and a few other FOD disorders.

Dr. Vladutiu tells me that initial results have been so remarkable

that the investigators took the unusual step of presenting their

preliminary findings at a scientific meeting before the study was

complete. Triheptanoin is an anaplerotic odd-chain triglyceride. The

idea is that CPT and several other long-chain fatty acid enzymes are

not needed for it's metabolism, therefore triheptanoin can bypass

the impaired pathways and produce ATP at a normal rate. This is

the " Lorenzo's Oil " of CPT. Results are that striking. Patients do

tell me that it can be a hassle to get in the study, but if I were

eligible (I'm not because of my second defect) I would be pounding

on doors, trying to get in.

http://www.fodsupport.org/fod_study.htm

Barbara

> > > I'm very much a newbie and have been following the discussion

> > > of fatty acid metabolism, coconut oil, MCT, etc., with much

> > > interest. I'm still at the point where I'm trying to gather

> > appropriate

> > > info before I present it all to my doc.

> > >

> > > What I find particularly interesting is the mention in passing

> of

> > > " defects in fatty acid metabolism " . In '89 when I first had

> tests

> > > results indicating the possibiliity of a thiamine (vitamin B1)

> > > dependency disorder, the head of the lab doing the work ( in

> > > consulting with my doc at the time), suggested that my fatty

> acid

> > > metabolism should be investigated.

> > >

> > > I've had 3 fatty acid tests done since then, all showing

> abnormal

> > > results, but my doc is now deceased and I haven't been able

to

> > > find a doc to interpret the results with any level of

> > understanding

> > > (family doc, neurologists, nutritionally oriented alternative

> > > medicine MD' s, and naturopaths haven't really had a clue).

What

> > > kind of a doc investigates defects in fatty acid metabolism?

I'm

> > > suspecting a " run of the mill " endocrinologist or neurologist

> > > would not be the answer. Do many mito specialists have the

> > > knowledge/resources to investigate this?

> > >

> > > I am headed now to read the info on the links on MCT oil that

> > > Barbara so kindly provided in hopes of finding some info that

> > > might help, but thought I would also ask here.

> > >

> > > For what it's worth (probably nothing considering it's apples

> and

> > > pears), I've been on a ketogenic diet for close to a year with

> > very

> > > beneficial results (it's the recommended diet for PDCD) . It's

a

> > > diet VERY low in carbs and VERY high in all kinds of fats

> > > including Yudo Blend high omega 3-6-9- fatty acids, butter,

> olive

> > > oil, cod liver oil and coconut oil. In that time, my

cholesterol

> > > numbers have now DROPPED to normal (sometimes BELOW

> > > normal) on the regime. Cause and effect....very hard to say.

> > >

> > > As always, thanks for your collective expertise and guidance.

> > >

> > > Best Wishes, Anita