The shot gun approach- mitochondrial/ methylation/ antoxidants

[adreno]

Roxie thanks for that site - the d ribose is nearly 10 dollars chaper than iherb and i use it a lot
however has anyone used that company before?
I saw something on the site about repeat charges to your credit card unless you tell then to stop
I emailed them to clarify and will let you know how I get on

4 oz Now D-ribose costs $13.47 on Nuvalife. You can get Healthy Origins 10.6 oz on iHerb for $27.98.

 

[Allyson]

ah I am having trouble navigating this new site
creatine is new for me and may take a while to kick in so i will perservere as with l carnitine and d ribose - both of which i already take - it is supposed to help in atp cycle.
it says on my bottle to take it with a sweet drink and before and after exercise- anyone know the reason for this?

 

[Allyson]

4 oz Now D-ribose costs $13.47 on Nuvalife. You can get Healthy Origins 10.6 oz on iHerb for $27.98.

no the heathly origins is advertised on nuvalife now for about 16 dollars for 10. 6 oz if you are a member

 

[Allyson]

how weird now - 10 mins later - that chaper price (which was in red) has gone and it is now $24.35 for 10. 6 oz of d ribose at nuvalife

oh i see they have added one to my cart at 19.35 perhaps that pirce is for one pack only then 24.35 per pack after that...still much cheaper than iherb but are they reliable etc?

yep that was the case - that first one is at 19.35 and any others cost 24.35.

 

[Allyson]

oh, Nuvalife .... they charge your credit card an ongoing fee of 20 dollars a month to be a member ...that's why prices are " lower"
and it was only in the very fine print ...not stated upfront....not very nice
By placing your order today you will begin a 7-day trial of BestBrandValues. After the trial the account fee of $19.95 per month will be charged or debited by BestBrandValues to the credit or debit card you provide today and then be automatically charged or debited at the then-current monthly account fee for each month that you continue your account. Only one account per household permitted. You may cancel your account any time by calling1-866-529-3413.

 

[heapsreal]

Iherbs dr's best ribose is what i have been using 8.8oz/250grams for $25.60, that looks abit cheaper then nuvalife. Both ribose and creatine i think are helping me alot with exercise and recovery, that next day soreness is reduced. There are other things that have helped my improvements but these things i believe are definately helping my exercise recovery.

 

[Allyson]

I think the alcar has definately helped me to be able to handle carbs better, when i eat a small carb meal previously it would set my appetitte off and i would easily put weight on from carbs. Of late i have been losing weight with no change in diet and can handle small carb meals without going on a binge or the urge to go on a binge. I did start the alcar with the q10 so probably the combo of both helping.

cheers!!!

Heaps have you tried going dairy-free? My appetite plumetted once I cut out dairy...the most drastic thing I have experienced; previously I was always craving food ... now its 3 small meals a day... if I really have to...

 

[Allyson]

What is Alcar?

 

[heapsreal]

Heaps have you tried going dairy-free? My appetite plumetted once I cut out dairy...the most drastic thing I have experienced; previously I was always craving food ... now its 3 small meals a day... if I really have to...

I dont eat alot of dairy, go through stages of eating cheese and some periods wihtout but never noticed any difference. I follow a low carb diet so my diet revolves around meat, no bread, sugars flour etc. But since i have been improving my whole metabolism feels like its changing, handling carbs(which i eat rarely and in small amounts) and losing weight without diet changes. Low carb diet has been the best for me in general.

cheers!!!

 

[Allyson]

yeah cool chart thanks Adreno ...could you post the link please I have not heard of mitoaction before and a google search bought up their website but not the chart....I want to send it to my docs...that is useful and I take most those things on it and find they help.

 

[adreno]

yeah cool chart thanks Adreno ...could you post the link please I have not heard of mitoaction before and a google search bought up their website but not the chart....I want to send it to my docs...that is useful and I take most those things on it and find they help.

If you click on "Mitoaction" in my post, it will take you to their website.

 

[adreno]

yeah cool chart thanks Adreno ...could you post the link please I have not heard of mitoaction before and a google search bought up their website but not the chart....I want to send it to my docs...that is useful and I take most those things on it and find they help.

Sorry, the link to the supplement chart is here:
http://www.mitoaction.org/blog/update-mitochondrial-disease-treatment-approaches

 

[merylg]

Hi heaps, there is another chart here under 'management'...
http://www.amdf.org.au/medical-info.htm

 

[Rand56]

What is Alcar?

Acetyl-l-carnitine

 

[heapsreal]

Hi heaps, there is another chart here under 'management'...
http://www.amdf.org.au/medical-info.htm

Interesting looking at their management, supplements used are very similar to many cfs/me supplements we use.
Their symptoms closely relate to ours, it doesnt look like testing is very reliable so many could have these issues going on??

 

[penny]

my doc hac prescirbed dexamphtetamine for me as a stimulant
isn't that "speed"?
woud that not cause you to crash and burn?
Has any one else tried it please?

Just responded to another thread with something about stimulants, but wanted to reply to you too.

The executive summary is: they work for me if I am not too sick and if I don't take them very often. Or, in other words: what Alex said!

The longer version:
I've tried adderal, dexamphetamine and ritalin and they all seem to be similar. I initially was prescribed them when I first became ill (well about 8 months in) and I tried taking them regularly, like folks do for ADD. They'd seem to help for a couple of days and then stop working and just leave me feeling strung out, adding a weird exhaustion on top of my 'normal' illness and fatigue. I'd stop taking them for a while, then the doc would try a different stimulant or change the dose, with the same pattern. I was also prescribed and tired nuvigil (or provigil, can't remember which one) which I believe was developed by the military to keep soldiers awake, and was/is often prescribed for narcoleptics. It didn't work for me at all and just made me feel crap and even more cognitively impaired than normal.

So I gave up on taking any stimulants regularly. Fast forward a year plus, I had some general improvements, went back to work and so started experimenting again. Now, they usually help me, especially with cognitive functioning but I can't be too sick or they just make me worse. Also I don't take very much and don't take it very often. Dosage wise I take 5mg of dexadrine (though I would try to take less but it's a capsule so hard to split up) or 2.5-5mg of ritalin. Even at this dosage I don't sleep as well when I take it, and often need extra rest time over the following couple of days. I average one dose every 2-3 weeks, unless there is something very unusual going on.

Btw, caffeine is the same for me just not quite as strong.

(sorry if this is OT!)

 

[roxie60]

Acetyl-l-carnitine

Ive been asked to take L-Carnitine 1500, is tht the same as Alcar?

 

[adreno]

Ive been asked to take L-Carnitine 1500, is tht the same as Alcar?

Not exactly. But some of the L-carnitine will convert to ALCAR in the body. Both might work for you. The main difference is that ALCAR strengthens acetylcholine connections, and is more directed at neurons than regular carnitine.

 

[Allyson]

i note creatine is found naturally in meat and fish which may explain why the paleo diet helps
I have been on Creatine for about 3 weeks and it is the one thing that has helped the most.
Last night I had a great sleep and woke feeliing like i had slept well
went for a 30 min bike ride and 20 min walk last nite too and have not crashed today
it seems you take a highish dose for month then go on to maintenance dose.
This is fantastic ...my muscles are feeling better, i am feeling more energetic and my mood is way up too.
Still not bursting with energy and have not pushed the limits by any stretch but i am happy to be feeling so much better even if still in bed most the time.
i am surprised i have not heard more about Creatine though i see it is on the MITO website for mitochondrial diseases.
Ia lso take IM b12 fortnightly and alcar and ALA plus glutaimine and d ribose
noticed a big difference in sleep with b 12
muscle aches disappeared with D ribose
and energy seems fto be returning with creatine
the melatonin CIRCADIN is better than the BIOVEA brand btw Heaps, i notice no effect at all with the Biovea unfortunatley while the circadin does seem to improve sleep

 

[Allyson]

Oh, i take L carnitine not Alcar - I thought they were the same thing but just saw earlier post clarifying difference