Membrane lipid replacement for mitochondrial damage - comment by Mady Hornig

[Sidereal]

Thanks - I was looking at one on the NT (?) site that had beetroot in it for colouring, which put the knackers on that for me (causes migraines). So much to be careful about!

Yeah, a lot of other filler in it as well.

 

[Sasha]

Thanks - I was looking at one on the NT (?) site that had beetroot in it for colouring, which put the knackers on that for me (causes migraines). So much to be careful about!

Damn! So does this.

 

[Jonathan Edwards]

I must say I was a bit perplexed by some of Hornigs statements, I kinda prefer the more modest approach by Fluge&Mella. Unless they know something we don`t (as they might), i rather have studies speak for themselves.

I was a bit puzzled too. She may have been paraphrased a bit. I don't think we have any published studies on lipid replacement. Looking at the sites where it is highlighted I am very unimpressed. Mitochondria may turn out to be important but I don't think we know that yet.

 

[Sasha]

I was a bit puzzled too. She may have been paraphrased a bit. I don't think we have any published studies on lipid replacement. Looking at the sites where it is highlighted I am very unimpressed. Mitochondria may turn out to be important but I don't think we know that yet.

I found this but haven't had time to read it yet:

http://www.immed.org/publications/nicolson_elllithorpejcfs_copy.pdf

It may be one of those things that's maybe worth a punt while waiting for the big guns to come in - because rituximab and so on still seem to be several years away. Or maybe not! Need to do some more reading but it's sometimes better just to give a thing a try, as long as it looks harmless at worst (though always starting cautiously with small doses, as ever).

 

[adreno]

I found this but haven't had time to read it yet:

http://www.immed.org/publications/nicolson_elllithorpejcfs_copy.pdf

It may be one of those things that's maybe worth a punt while waiting for the big guns to come in - because rituximab and so on still seem to be several years away. Or maybe not! Need to do some more reading but it's sometimes better just to give a thing a try, as long as it looks harmless at worst (though always starting cautiously with small doses, as ever).

That has been discussed on the boards several times. Why don't you do a search? No controls, subjective fatigue measures plus the supplement used is full of other ingredients like vitamins etc. Don't know why anyone would find this interesting.

 

[Sasha]

That has been discussed on the boards several times. No controls, subjective fatigue measures plus the supplement used is full of other ingredients like vitamins etc. Don't know why anyone would find this interesting.

Thanks - saved me some reading!

 

[aimossy]

The bit I bolded in my first post.

Funny - think it may just be me. I don't view that as saying patients should try this. She says "some patients" I think she is highlighting different types more than anything and that it isn't expressed as an intentional recommendation.

I find it very strange all round though, because I've never even heard of this either and maybe it's something she is hearing from clinicians.

 

[Sasha]

Funny - think it may just be me. I don't view that as saying patients should try this. She says "some patients" I think she is highlighting different types more than anything and that it isn't expressed as an intentional recommendation.

I find it very strange all round though, because I've never even heard of this either and maybe it's something she is hearing from clinicians.

I've edited my title in case it gave the impression that she was making a direct recommendation.

 

[Marco]

Beatrice Golomb has claimed some success for CoQ10 supplementation in Gulf War Ilness in a small trial :

http://www.science20.com/news_artic...coq10_antioxidant_helps_in_small_study-148294

Like others though I'm a little taken aback if this statement is accurate. It seems at odds with what we hope is serious science to suggest that the problem might be fixed with some off the shelf supplements many of us have already tried. But then that applies equally to Gulf War vets.

ETA - Also a fairly recent 'proof of concept' CFS study :

http://www.sciencedirect.com/science/article/pii/S0261561415001892

 

[Deltrus]

In normal humans, damaged cells and mitochondria would just commit autophagy and then heal. Something is preventing that in CFS. I don't think it is nutrition. It is either ongoing damage, or some sort of nutrient block.

Lipid replacement therapy would be nice if we could trigger a healing process.

 

[*GG*]

I don't know if it's available on Amazon UK. I get it on iHerb:

http://www.iherb.com/Nutricology-NT-Factor-EnergyLipids-Chewables-60-Chewable-Tablets/49283

I use this particular version of the NT Factor because it doesn't have the added "mitochondrial supplements" which are much too stimulating for me and make me really sick. But it's very expensive + delivery + customs (for those of us in the EU) so I'm not sure if it would be worth your while.

Ah, ok. I actually looked at the Tablets, only 30 day suppy, not 60 days like Chewable stuff. Are the concentrations the same? Chewable supplements seem to be more expensive typicaylly, but not in this case?

GG

http://www.iherb.com/Nutricology-NT-Factor-Advanced-Physicians-Formula-150-Tablets/45695

 

[adreno]

In normal humans, damaged cells and mitochondria would just commit autophagy and then heal. Something is preventing that in CFS. I don't think it is nutrition. It is either ongoing damage, or some sort of nutrient block.

Lipid replacement therapy would be nice if we could trigger a healing process.

Damage to cell membranes is normally caused by ROS. PWME are probably better off taking vitamin E than lecithin:

https://www.sciencedaily.com/releases/2015/05/150519132635.htm

The antioxidant requirement for plasma membrane repair in skeletal muscle.
Promotion of plasma membrane repair by vitamin E.

On the other hand, you will find exactly zero studies on lecithin (or NT factor) facilitating membrane repair.

 

[u&iraok]

Ah, ok. I actually looked at the Tablets, only 30 day suppy, not 60 days like Chewable stuff. Are the concentrations the same? Chewable supplements seem to be more expensive typicaylly, but not in this case?

GG

http://www.iherb.com/Nutricology-NT-Factor-Advanced-Physicians-Formula-150-Tablets/45695

GG, you're looking at one with added ingredients. Here's one with just the phospholipids, it's cheaper:

http://www.iherb.com/Nutricology-NT-Factor-EnergyLipids-Chewables-60-Chewable-Tablets/49283

Nutricology is good, you could also try, LEF, they're good as well but it only has one of the phospholipids:
http://www.iherb.com/Life-Extension-PS-Caps-100-mg-100-Veggie-Caps/47814


This way you can tell if it's the phospholipids that help and I have the same reaction as sidereal to the 'mitochondrial supplements' - too stimulating. The one you picked also has l. acidolphilus which you may not want.


Just the one lipid, phosphatidylserine, helped me drastically when my brain was at it's worst. It took me from not being able to read or concentrate at all to being able to read for short periods. I'd like to try this Nutricology one, with all those other phospholipids.

 

[Violeta]

In normal humans, damaged cells and mitochondria would just commit autophagy and then heal. Something is preventing that in CFS. I don't think it is nutrition. It is either ongoing damage, or some sort of nutrient block

EBV immortalizes B cells through hijacking heat shock protein, (if I remember correctly), making the cancers that it's involved in very difficult to treat.

http://www.ncbi.nlm.nih.gov/pubmed/7729416

 

[Kati]

I was a bit puzzled too. She may have been paraphrased a bit. I don't think we have any published studies on lipid replacement. Looking at the sites where it is highlighted I am very unimpressed. Mitochondria may turn out to be important but I don't think we know that yet.

Certainly one would not recommend lipid replacement for peope who are 50-100 lbs overweight ?!?

 

[Sasha]

GG, you're looking at one with added ingredients. Here's one with just the phospholipids, it's cheaper:

http://www.iherb.com/Nutricology-NT-Factor-EnergyLipids-Chewables-60-Chewable-Tablets/49283

That's also got:

Other Ingredients
Xylitol, fructooligosaccharides (FOS), vegetable stearic acid, maltodextrin, beet juice (natural color), vegetable magnesium stearate, citric acid, triacetin, pantethine, natural mixed berry flavor, sodium borate, rosemary extract, silicon dioxide.

I wish they wouldn't stick stuff in there when they don't have to.

Nutricology is good, you could also try, LEF, they're good as well but it only has one of the phospholipids:
http://www.iherb.com/Life-Extension-PS-Caps-100-mg-100-Veggie-Caps/47814

That has:

Rice flour, vegetable cellulose (capsule), vegetable stearate, silica.

Contains soybeans.

 

[Sidereal]

Certainly one would not recommend lipid replacement for peope who are 50-100 lbs overweight ?!?

One tablet of that chewable NT Factor I linked to contains less than a gram of phospholipids. It's not going to make people fat at least. But as adreno said, it makes little sense to keep supplying the phospholipids if they're just going to keep getting mangled by ROS.

 

[Sidereal]

Just the one lipid, phosphatidylserine, helped me drastically when my brain was at it's worst. It took me from not being able to read or concentrate at all to being able to read for short periods. I'd like to try this Nutricology one, with all those other phospholipids.

Same here with the chewables, back in 2014 when I couldn't concentrate for even 30 seconds. It was as if the lights came on. After a while I stopped noticing further benefits. It gave that initial boost in brain fog and muscle weakness but after that nothing. I would call it a very minor but noticeable effect. Still, for someone who is totally bedridden and can't even read a book, as I was back then, it could be the difference between life being tolerable vs. intolerable.

 

[Sasha]

One tablet of that chewable NT Factor I linked to contains less than a gram of phospholipids. It's not going to make people fat at least. But as adreno said, it makes little sense to keep supplying the phospholipids if they're just going to keep getting mangled by ROS.

Confused now (doesn't take much! I know zero biology). I'd been thinking the phospholipids might be worth a try...

 

[Sasha]

Same here with the chewables, back in 2014 when I couldn't concentrate for even 30 seconds. It was as if the lights came on. After a while I stopped noticing further benefits. It gave that initial boost in brain fog and muscle weakness but after that nothing. I would call it a very minor but noticeable effect. Still, for someone who is totally bedridden and can't even read a book, as I was back then, it could be the difference between life being tolerable vs. intolerable.

When you say "nothing", do you mean the effect went away or just that it didn't build?