PEM experiment = COQ10 Any volunteers?

[Seven7]

Sooo I was in bad shape I MEAN bad shape. I didn't feel viral nor sick per say, just inability to produce energy and horrible PEM.

Then I increased my dose of COQ10 from 400mg a day to 1200mg/ Day (400mg each meal). And I IMMEDIATELY got better.

This is not the first time, I just never put 2 and 2 together since I used to change more stuff at once, but since I am stable I do not make Much changes to meds or supplements anymore. I also went down hill when I reduced it (TOO EXPENSIVE).

I am wondering if somebody can test this and tell me if you (HAVE VIRAL UNDER CONTROL) and increase CQ10 if PEM goes away??? I even been walking aerobic??? I know I can crash but I am testing waters.

 

[minkeygirl]

I can tell you my cousin's children, who had Huntington's Disease, took high doses of CoQ10 because of the energy thing.

 

[SOC]

Sooo I was in bad shape I MEAN bad shape. I didn't feel viral nor sick per say, just inability to produce energy and horrible PEM.

Then I increased my dose of COQ10 from 400mg a day to 1200mg/ Day (400mg each meal). And I IMMEDIATELY got better.

This is not the first time, I just never put 2 and 2 together since I used to change more stuff at once, but since I am stable I do not make Much changes to meds or supplements anymore. I also went down hill when I reduced it (TOO EXPENSIVE).

I am wondering if somebody can test this and tell me if you (HAVE VIRAL UNDER CONTROL) and increase CQ10 if PEM goes away??? I even been walking aerobic??? I know I can crash but I am testing waters.

I increased my CoQ10 to 1200 mg and the PEM definitely did not go away. I might have slightly more energy as a result, but it did absolutely nothing for PEM.

 

[place]

When I started taking it , without other mito supplements, I had great energy for several weeks then it stopped. Now it is carintine that gives me energy. I take 2-300 of CoQ10, with 2-3g of carintine, and other stuff.

 

[*GG*]

Sooo I was in bad shape I MEAN bad shape. I didn't feel viral nor sick per say, just inability to produce energy and horrible PEM.

Then I increased my dose of COQ10 from 400mg a day to 1200mg/ Day (400mg each meal). And I IMMEDIATELY got better.

This is not the first time, I just never put 2 and 2 together since I used to change more stuff at once, but since I am stable I do not make Much changes to meds or supplements anymore. I also went down hill when I reduced it (TOO EXPENSIVE).

I am wondering if somebody can test this and tell me if you (HAVE VIRAL UNDER CONTROL) and increase CQ10 if PEM goes away??? I even been walking aerobic??? I know I can crash but I am testing waters.

Interesting, I take at least 200 mg of CoQ10/day, more if I exercise or go to gym. My PEM seems to have been waning, still present, just not as bad as it used to be! I was chalking it up to LDN (low dose naltrexone) which I have been on at 4.5 mg since 2010, perhaps even a little of 2009? I had a major crash in August of 2009, and started LDN during my crash, had issues with it then, but just increased by 1.5mg increments over the span of a few months.

GG

PS Was thinking of going off of LDN some time in the near future, and see if I notice a difference?

 

[Seven7]

I would not get off LDN, if you have viral load then you will have more symptoms and more fatigue and more PEM.

I was wondering with people that have the viral load under control.
@SOC Sorry to hear that!!! I know I have learn to play with meds until I achieve less symptoms, I do not believe because I have CFS I have to feel like crap so hang in there, I think you will figure it out. I keep in my almost remission back to bed. Is like a Jojo. After all I have done today, will take it easy next few days, but I know I over did for sure today, will be interesting if I get the expected crash in 3 days.

 

[heapsreal]

interesting thread. i have just increased my dose to 400mg from 100mg twice a day. but with a higher dose im only doing a morning dosing. Im looking at slowly increasing. I cant say i have noticed much in the pem department but a slight increase in energy maybe??

 

[*GG*]

I have no known high viral titres!

GG

 

[SDSue]

What brands of CoQ 10 are ya'll using?

 

[*GG*]

What brands of CoQ 10 are ya'll using?

Vitacost.

GG

 

[Gingergrrl]

Interesting thread. I very recently started taking 200 mg per day of CoQ10 but not noticing anything (good or bad.) I think I will up to 400 mg and see what happens. I don't want to up it all the 1200 b/c that would be too drastic a change for me. I am at a much lower level of functioning right now (pretty much housebound outside my recent trip to the ER LOL.)

 

[Sasha]

Are there recommendations about dose? I remember taking probably a fairly ploddy dose of CoQ10 during my first illness over 20 years ago and nothing happening.

Is it for the mitochondria? I've forgotten.

 

[Seven7]

I forgot to add BE CAREFUL ON BRAND. I can notice such a difference where another brand does nothing. I am using Nature's Bounty. I never changed brands so I coulnd't remcomend another. I also take their L-Acetyl- Cartinine W ALA (alpha Lipoic Acid).

Today I am not feeling as great (a little sinus pressure and sleepy) since I didn't sleep but a few hours but still going!

 

[SDSue]

I threw caution to the wind!
I'm taking a walk of the wild side!
I'm living out loud!

Actually, I upped my coQ from 400 to 800 today. And that is wild for me. Not sure if I notice anything yet.

I go thru spells where I knock back a ton of one supplement to see if it matters. I call this method "desperation".

Are there recommendations about dose? I remember taking probably a fairly ploddy dose of CoQ10 during my first illness over 20 years ago and nothing happening.

Is it for the mitochondria? I've forgotten.

The mitochondria specialists recommend 600 mg ubiquiNOL split into 2 doses (i.e. 300 mg twice per day).
The INIM recommends only 200 mg daily.

 

[SOC]

Are there recommendations about dose? I remember taking probably a fairly ploddy dose of CoQ10 during my first illness over 20 years ago and nothing happening.

Is it for the mitochondria? I've forgotten.

See this Mayo Clinic site for info on how much CoQ10 has been used for different conditions. If you think you're dealing with mitochondrial problems, this section might be particularly relevant

To treat mitochondrial diseases, 120-1,200 milligrams of CoQ10 has been taken by mouth daily for up to one year. A liquid form of CoQ10 has been taken by mouth at a dose of 5 milligrams per kilogram daily. A dose of 2 milligrams per kilogram of CoQ10 has been taken by mouth daily for six months.

 

[SDSue]

@SOC You said a four-letter word ……… (starts with "M")

 

[SOC]

@SOC You said a four-letter word ……… (starts with "M")

Yeah, I know. But sometimes they have good info -- as long as they're not talking about "CFS". You won't catch me going anywhere near any of their physical locations.

 

[Mij]

What type of CoQ10 are you all taking? I've been taking Ubiquinol formula and for some reason I can not tolerate more than 100mg/day. I tried to increase my dose to 200mg/day and my heart beats hard.

 

[catly]

I tired this for a couple of months http://www.mitoq.com/supplements/. It's supposed to be super potent CoQ10 but it didn't do anything for me, maybe I needed to stay on it a while long. It's pretty expensive but probably comparable to taking high doses of Ubiquinol.

 

[SDSue]

@Mij I am taking the following. (It's available at Costco relatively inexpensively.)



I've heard many people say they can't take much CoQ at all. Perhaps I'm really low on it, as I seem to be able to take mass doses. I think I'll increase to side effects and then back down slightly so I know I'm getting full effect.

There is a fellow on Amazon who does good reviews of many different supplements. If I'm confused, I follow his advice. He breaks down cost per pill, active ingredients, etc. So far, I've followed his rec's on Omega's and CoQ10 and have been happy and have saved money.

http://www.amazon.com/gp/pdp/profile/A3UIH7DCQRA21L/ref=cm_cr_dp_pdp?filter=review