Rare Coenzyme Q10 gene variations in ME patients

[heapsreal]

True. VitaCost is a rip off for postage, when compaired to iHerbs rates. VitaCost restrict NAC, Metafolin & countless other benign products from being sent to Australia. Why?

@heapsreal

"iherb is $8 for me and vitacost was $14, but vitacost seem to have regular specials on some products like buy 1 get 1 free or the second at half price etc. Nothing beats iherbs shipping cost and speed but when there is a good special it the and not in a rush for your product then shipping isnt as important."

- You will find that iHerbs $8 postage is NOT the equivalent of VitaCosts $14.99 postage, as iHerbs postage is superior in multiple aspects

Vitacosts website via App had multiple deficiencies, it has been recently updated to include website registration after personal correspondence with there "CEO". Overall I think iHerb is a better option, but each to there own! Good luck

Yes i know they have things like NAC restricted and have emailed them about this. But like i have mentioned before if your not in a rush, then the extra $7 for delivery on a product that gives u a huge discount u wont get at iherb. At the end of the day my q10 and acetyl carnitine with shipping was way cheaper then what i would get from iherb, but agree the shipping from iherb is quicker.

Its all about working out the best overall deal, sometimes paying extra for shipping on heavily discounted products is worth it and a big saving...Just need to be on the look out for for specials etc.

 

[heapsreal]

Maybe we need a thread dedicated to someone posting specials when they occur from the regular companies like iherb, vitacost etc??

 

[Mij]

You could book mark the "Specials" section at the iherb site. They update every Wednesday. I find iherb doesn't have as many good deals anymore.

 

[Leopardtail]

mmmm is this turning into an iHerb thread?????

 

[Leopardtail]

Maybe we need a thread dedicated to someone posting specials when they occur from the regular companies like iherb, vitacost etc??

yes that would likely be usefull...

 

[SOC]

Let's get this thread back on-topic, please. The topic is CoQ10 gene variations. If we want to keep talking about forms of CoQ10 and where to find the best deals on it, someone should start a new thread under General Treatment or Alternative Therapies so someone looking for that kind of info in the future can find this discussion.

 

[end]

Has anybody else seen this:

This may be the reason why I do not benefit from doses above 400mg per day

It was brought up while speaking with another member. Anyways KDM explains people with CFS/ME who have Prions actually feel WORSE on high dose CoQ10 ie 800/1000mg per day. Do gene variations make one more susceptible to Prions, or is it simply the H2S production inturn increasing Hg's toxicity that cause Prions to form?

 

[heapsreal]

Has anybody else seen this:

This may be the reason why I do not benefit from doses above 400mg per day

It was brought up while speaking with another member. Anyways KDM explains people with CFS/ME who have Prions actually feel WORSE on high dose CoQ10 ie 800/1000mg per day. Do gene variations make one more susceptible to Prions, or is it simply the H2S production inturn increasing Hg's toxicity that cause Prions to form?

Its an hour and a half long?
How far into it does he talk about q10?
Have u found benefits with other mito supps like acetyl carnitine?

 

[end]

And well worth it - he indicates 20% of ME patients have Prions. That would equate to 1 in 5 patients having high dose CoQ10(as discussed in this thread)is counter productive.

Carnitine/s do nothing for me, except cause GI upset in high dosages - careful we don't want to go off topic haha

 

[heapsreal]

And well worth it - he indicates 20% of ME patients have Prions. That would equate to 1 in 5 patients having high dose CoQ10(as discussed in this thread)is counter productive.

Carnitine/s do nothing for me, except cause GI upset in high dosages - careful we don't want to go off topic haha

Off topic?? Are u using q10 for something other then mito function?

 

[end]

In regards to talking about Carnitine on this thread.

Above:

"Let's get this thread back on-topic, please. The topic is CoQ10 gene variations. If we want to keep talking about forms of CoQ10 and where to find the best deals on it, someone should start a new thread under General Treatment or Alternative Therapies so someone looking for that kind of info in the future can find this discussion.
Yesterday at 9:38 AMReport"


Heaps, you have a PM hope your reply was more fruitful then mine from Vita'

 

[roxie60]

@Valentijn, am I still reported in your data? If so can you pm me with the 'p'#. If my poor memory serves I was towards the end, double digit but I cant find the original note you sent me. Thanks.

Someone asked me about the COQ2 gene, which is involved in CoQ10 (ubiquinone) synthesis, so I took a look at all of the genes involved in CoQ10 synthesis for 12 ME patients I have full 23andMe data for, compared to 12 controls.

Purple highlights mean a result is calculated as being present in 1% or less of the general population, red is for 1-2.5% prevalence, orange is 2.5-5%, and yellow is 5-10%. Bold red font is used for missense mutations.

View attachment 7884
Neither ME patients nor controls have any rare SNPs in COQ2, COQ7, or COQ10A. ME patients and the controls have about the same number of rare variations for COQ4, COQ5, COQ6, ADCK3 (COQ8), COQ9, and COQ10B.

But ME patients have far more rare variations than the controls for PDSS1 and PDSS2 (COQ1):

• We have 5 variations at less than 1% prevalence (purple), versus 1 for the controls.
• We have 3 variations at 1-2.5% prevalence (red) versus 4 for the controls.
  
• We have 11 variations at 2.5-5% prevalence (orange), versus 4 for the controls.
• We have 23 variations at 5-10% prevalence (yellow), versus 14 for the controls.

If weighing the occurrence of the PDSS1 and PDSS2 variations according to rarity, we would score 110, versus 52 for the controls. So we have just over twice as much rarity in these SNPs as the controls do.

ote="Valentijn, post: 484729, member: 3723"]Someone asked me about the COQ2 gene, which is involved in CoQ10 (ubiquinone) synthesis, so I took a look at all of the genes involved in CoQ10 synthesis for 12 ME patients I have full 23andMe data for, compared to 12 controls.

Purple highlights mean a result is calculated as being present in 1% or less of the general population, red is for 1-2.5% prevalence, orange is 2.5-5%, and yellow is 5-10%. Bold red font is used for missense mutations.

View attachment 7884
Neither ME patients nor controls have any rare SNPs in COQ2, COQ7, or COQ10A. ME patients and the controls have about the same number of rare variations for COQ4, COQ5, COQ6, ADCK3 (COQ8), COQ9, and COQ10B.

But ME patients have far more rare variations than the controls for PDSS1 and PDSS2 (COQ1):

• We have 5 variations at less than 1% prevalence (purple), versus 1 for the controls.
• We have 3 variations at 1-2.5% prevalence (red) versus 4 for the controls.
  
• We have 11 variations at 2.5-5% prevalence (orange), versus 4 for the controls.
• We have 23 variations at 5-10% prevalence (yellow), versus 14 for the controls.

If weighing the occurrence of the PDSS1 and PDSS2 variations according to rarity, we would score 110, versus 52 for the controls. So we have just over twice as much rarity in these SNPs as the controls do.[/quote]
@va

 

[~Tatty~]

Does anyone supplementing with CoQ10 feel they benefit from it?

I used to take it. I felt no difference at all

I've tried lots of different vitamins/supplements over the years: nothing's made any difference to me

 

[Jon_Tradicionali]

I used to take it. I felt no difference at all

I've tried lots of different vitamins/supplements over the years: nothing's made any difference to me

That seems to be the case for many.
Especially those if us still on this forum.

 

[Jammy88]

i was taking 100mg twice a day of q10 as well as acetyl carnitine 500mg once a day, didnt notice alot but i increased the doses after a few people have improved on it but also after seeing the doses used for mitochondrial diseases use much higher doses then alot of us.

So i increased my q10 to 400mg in the morning and acetyl carnitine to 1000mg in the morning and have noticed an increase in energy and stamina but its not like a stimulant type energy. I am going to slowly increase the doses higher and see. I have just ordered some 400mg strength pills and have 100mg strength, so will attempt to increase it in 100mg increments of q10.

I would suggest increase slowly as i know when i started acetyl carnitine it was abit too overstimulating at first when i took just the 500mg dose.

Hi @heapsreal , I know this is an old topic but I just got into it. I feel the same as you: CoQ10 and AcetylCarnitine improve my energy and stamina. I'd say they're the most beneficial supplements in my case, together with vit. B complex. However, I don't know what that means… I guess those supplements help mitochondrial support.

 

[Mel9]

Does anyone supplementing with CoQ10 feel they benefit from it?

Yes, definitely

 

[heapsreal]

Hi @heapsreal , I know this is an old topic but I just got into it. I feel the same as you: CoQ10 and AcetylCarnitine improve my energy and stamina. I'd say they're the most beneficial supplements in my case, together with vit. B complex. However, I don't know what that means… I guess those supplements help mitochondrial support.

Your spot on. The mito supps are suppose to help the cells to make energy more efficiently but also are antioxidants and can help reduce damage to cells and mitochondria.

There has been a couple of studies in cfs/me showing either low levels of q10 or carnitine and or improvement with those supps.

Supplements are really trial and error, what might work for one wont work for another, sometimes its also getting the right combo as well. Sometimes the effects can be subtle and u dont notice the how its helping until you stop and then notice a difference. Sometimes one just needs a break from some supps too.

Hows that for being very vague lol
Have a go, start low and go slow.

 

[Jammy88]

Your spot on. The mito supps are suppose to help the cells to make energy more efficiently but also are antioxidants and can help reduce damage to cells and mitochondria.

There has been a couple of studies in cfs/me showing either low levels of q10 or carnitine and or improvement with those supps.

Supplements are really trial and error, what might work for one wont work for another, sometimes its also getting the right combo as well. Sometimes the effects can be subtle and u dont notice the how its helping until you stop and then notice a difference. Sometimes one just needs a break from some supps too.

Hows that for being very vague lol
Have a go, start low and go slow.

Thanks for the explanation.

 

[melamine]

Does anyone supplementing with CoQ10 feel they benefit from it?

I've never benefitted from CoQ10 or Ubiquinol at any of the moderate to higher doses, or with carnitines. As I recall, 600mg ubiquinol was my max. trial dose. I may try a higher dose of regular CoQ10 at some point. I definitely have mito-style pathology, so the lack of any effect whatsoever has been disappointing.

 

[Jon_Tradicionali]

I've never benefitted from CoQ10 or Ubiquinol at any of the moderate to higher doses, or with carnitines. As I recall, 600mg ubiquinol was my max. trial dose. I may try a higher dose of regular CoQ10 at some point. I definitely have mito-style pathology, so the lack of any effect whatsoever has been disappointing.

Yes there seems to be an inconsistent variance on who finds success with CoQ10.

I also tried 500mg with no effect at all.