Membrane lipid replacement for mitochondrial damage - comment by Mady Hornig

[Sidereal]

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

Didn't build.

 

[Sasha]

Didn't build.

Glad it did you some good, though. Even a 2% or 3% increase in function would be great for me right now.

Unfortunately my brains have pretty much fallen out now and I'm not sure what to try!

 

[jimells]

That has:

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

That's a really interesting list. Every time I open a package that has one of those little packets of silica, it says

DO NOT EAT!

 

[Groggy Doggy]

If we follow a healthy diet, then we don't need to take a supplement. I think its better to get nutrieints from their souce.

"Good sources of lecithin include liver, red meat, whole grains, legumes, and egg yolks (in fact, the term "lecithin" is derived from the Greek word for egg yolk, lekithos). Free choline (without the phosphatidyl group) is found in whole grains, liver, soy, and in some vegetables (especially cauliflower and cabbage)"

http://www.swansonvitamins.com/content/encyclopedia/supplements/lecithin.html

For breakfast, I cook 1-2 organic, free-range duck eggs. Duck eggs are alkaline and are high in choline. I also eat a handful of raw, organic, walnuts each day.

 

[ErdemX]

I've used NT Factor at least for 6 months with no benefit, no improvement in energy. I've used it more than suggested dose.

I've also used CQ10 in high doses for months with no benefit. Actually, I've been taking it for years, recently liposomal.

I've also used high dose liposomal Vit C with no benefit.

I can go on and on

It's sad, actually. I've come to the conclusion that it would be very exceptional that we can get better with such supplements. They can probably "give energy" to the healthy people.

 

[Kati]

I've used NT Factor at least for 6 months with no benefit, no improvement in energy. I've used it more than suggested dose.

I've also used CQ10 in high doses for months with no benefit. Actually, I've been taking it for years, recently liposomal.

I've also used high dose liposomal Vit C with no benefit.

I can go on and on

It's sad, actually. I've come to the conclusion that it would be very exceptional that we can get better with such supplements. They can probably "give energy" to the healthy people.

Hi @ErdemX thanks for sharing your experience. I am hoping that through research we can get to the bottom of our abnormalities, so we can understand the disease mechanisms and find treatments that work. In the meantime, i am saving my money...

 

[rosie26]

I also eat a handful of raw, organic, walnuts each day.

Lucky you that you can eat that much without any problems. I was given a huge amount of walnuts off someone's tree many years ago and after the 4th day of eating a handful I developed a very unsettled nauseous stomach and realized it was the walnuts. So I only eat a few and then have a day off and so forth.

 

[ukxmrv]

If we follow a healthy diet, then we don't need to take a supplement. I think its better to get nutrieints from their souce.

"Good sources of lecithin include liver, red meat, whole grains, legumes, and egg yolks (in fact, the term "lecithin" is derived from the Greek word for egg yolk, lekithos). Free choline (without the phosphatidyl group) is found in whole grains, liver, soy, and in some vegetables (especially cauliflower and cabbage)"

http://www.swansonvitamins.com/content/encyclopedia/supplements/lecithin.html

For breakfast, I cook 1-2 organic, free-range duck eggs. Duck eggs are alkaline and are high in choline. I also eat a handful of raw, organic, walnuts each day.

You are very lucky that you can still digest a wide range of foods.

A bout of food poisoning has left me with problems digesting a whole lot of things on top of the long standing foods I could originally not eat.

Add that to the "normal" nausea and vomiting in the mornings that I have had for 30 years that makes preparing and eating anything at all very hard for the first 4 hours.

Then the problems of being too weak to prepare the meals that I want to eat.

The same goes for supplements too. Stomach / digestion problems with these.

Not been able to eat nuts for years or whole grains or cabbage.

There aren't any easy answers for good nutrition for some of us.

 

[Sidereal]

Then the problems of being too weak to prepare the meals that I want to eat.

@ukxmrv, I have the same problem. The way I've been able to resolve the issue of having to starve or eat junk food when I'm too weak with OI to cook is by batch-cooking my meals in an electronic pressure cooker. I just cut up and throw a ton of vegetables and starch into it. Because it has a timer I can just go and lie down afterwards and totally forget about it and it will keep my food warm all day without exploding or burning down the kitchen or whatever. I must say this device has reduced my food/cooking stress by 90%. Now I cook whenever I feel able to, which is typically in the evenings, due to POTS being better in the second half of the day for me. And this way there are always plenty of leftovers in the fridge for microwaving when I'm having a rough day and can't be upright long enough to prepare a fresh meal.

 

[u&iraok]

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.



That has:

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

Contains soybeans.

Oh, I know. I don't like these stearates. Don't want soy beans, either. And are they GMO? The rest sound ok but you said you had a problem with beet juice. Who cares about the color, man! No one cares what color their vitamins are, come on!

I gave up trying to find supplements without the additives, there are only a few.

 

[u&iraok]

You are very lucky that you can still digest a wide range of foods.

A bout of food poisoning has left me with problems digesting a whole lot of things on top of the long standing foods I could originally not eat.

Add that to the "normal" nausea and vomiting in the mornings that I have had for 30 years that makes preparing and eating anything at all very hard for the first 4 hours.

Then the problems of being too weak to prepare the meals that I want to eat.

The same goes for supplements too. Stomach / digestion problems with these.

Not been able to eat nuts for years or whole grains or cabbage.

There aren't any easy answers for good nutrition for some of us.

I'm sure you've already tried everything, but here are some easily digestible foods: banana, brown rice, kefir, avocados, oatmeal, eggs--soft boiled for 5 minutes.

Have you tried amaranth? It's kind of like quinoa but cheaper, it's easily digestible and has a high protein content.

You could mix kefir with berries or papaya and maple syrup. It seems odd but maple syrup is super good for you and has a lot of nutrients.

You could add brown rice to miso soup (just miso paste and water).

I remember when I had all-day-sickness when I was pregnant and extreme food aversion. All I could eat for 2 1/2 months were dry oats (not cooked!) and bananas.

 

[adreno]

Don't want soy beans, either.

NT factor is made from soy beans. It's soy lecithin. You can get sunflower lecithin, but I'm not sure it's all that great either.

 

[u&iraok]

Lucky you that you can eat that much without any problems. I was given a huge amount of walnuts off someone's tree many years ago and after the 4th day of eating a handful I developed a very unsettled nauseous stomach and realized it was the walnuts. So I only eat a few and then have a day off and so forth.

Try soaking nuts in salt water for 7-24 hours. Dry them completely and refrigerate. This will remove the enzyme inhibitors and make them easier to digest. If you've ever seen bits of nuts in your stool you know you're not digesting them properly.

 

[u&iraok]

NT factor is made from soy beans. It's soy lecithin.

Oh. Well. I guess I want them then!