Ron Davis at San Francisco rally: very close to a biomarker, looks like a mitochondrial problem

[Sasha]

CoQ-10 has made a huge difference for me, but the dosing is far beyond what's recommended. You have to keep in mind that it's recommended for standard subjects. I take it at the dosages recommended for MS.

What does do you take, Jaime?

Is this one of those things where brands matter?

 

[JaimeS]

What does do you take, Jaime?

Is this one of those things where brands matter?

I think it does. I've tried other forms/brands and not gotten the same effect as I do from Solgar 400-mg capsules. If anyone here does decide to go for them, using this link benefits me, because it's through iHerb (full disclosure, lol).

I take one in the AM, one in the PM, but if I feel a crash coming on, I'll take two to stave it off; and if I'm in the middle of a crash, I'll take three or four to pull myself out of it.

At least for me, it works very well. It's expensive -- like, $1 / capsule -- but still. I'm happy it exists at this dose.

-J

 

[Sasha]

I think it does. I've tried other forms/brands and not gotten the same effect as I do from Solgar 400-mg capsules. If anyone here does decide to go for them, using this link benefits me, because it's through iHerb (full disclosure, lol).

I take one in the AM, one in the PM, but if I feel a crash coming on, I'll take two to stave it off; and if I'm in the middle of a crash, I'll take three or four to pull myself out of it.

At least for me, it works very well. It's expensive -- like, $1 / capsule -- but still. I'm happy it exists at this dose.

-J

Thanks! How long did it take you to notice benefits when you first started?

 

[Kati]

Just gonna throw this out there again does anyone or can anyone point me in the direction of what Drugs are used to treat Mitochondrial diseases.....????

Want to do some research.

All I could find a list of supplememts

I believe that beyond supplements that are supposed to enhance mito function, we need to wait to see what Dr Davis and team found and whether one can generalize to all ME population. Is it a genetic problem? Is it an enzyme problem? Is it a pathway problem? Is it a deficiency? Are the viruses dysregulating the energy cycle? Once we know the problem we can focus on the solutions.

Of note, adult metabolic clinics deal mostly with genetic problems and the treatments are mostly supplements. I had a muscle biopsy a few years ago and while the microscopy showed atrophy of the slow twitch fibers (aerobic) the mitochondrial dna was all normal, and so I was no longer an interesting case for the mito clinic.

It reminds me @Justin30, L- carnitine may be of help in case you haven't tried it. It didn't help me though

 

[rosie26]

It gives me more energy but I tend to crash from it cause I over do it....

This is what would happen to me with ribose. It gave me more energy and I was able to do more but I would do too much and crash. It's very hard to stay within limits when limits are set so low even with some energy help with ribose.

I was always concerned that ribose was helping one part of my ME but accelerating another part of my ME negatively. Not sure though.

 

[JaimeS]

Thanks! How long did it take you to notice benefits when you first started?

Immediately, once the dose was right. In the middle of a crash, if I take these, it's 5-15 minutes before it begins to lift.

I was initially taking 100-mg, which is, I think, a 'middling' dosage for a healthy individual. Then I read -- maybe it was from Hip? -- that the dose for MS was much higher. I gave it a go and was shocked at how much more energy I felt.

HOWEVER -- and it's a big however -- I'm sure pathogens like it, too. It's cell food. I usually take 400-mg to 800-mg a day, and save bigger doses for before I begin an activity I fear may crash me, or if I've done something inadvisable and crashed already.

-J

 

[JaimeS]

whether one can generalize to all ME population. Is it a genetic problem? Is it an enzyme problem? Is it a pathway problem? Is it a deficiency? Are the viruses dysregulating the energy cycle? Once we know the problem we can focus on the solutions.

I think this is where the subclasses of ME may come into play. Considering that all of us have differing onset stories, I have to believe that you can end up with acquired mitochondrial dysfunction... hey, look, a new illness name!... via several different pathways. And that while we all end up at (nearly) the same place, the primum mobile may be very different; and the primum mobile may strongly affect which treatment is the right one, counter to the 'hit-and-run' hypothesis.

-J

 

[Sasha]

Immediately, once the dose was right.

Wow - that's amazing...

 

[JaimeS]

Wow - that's amazing...

....and shocking, the first time. I went from flat out, to cautiously sitting up, to cautiously standing, to 'taking it easy' the rest of the day, but otherwise all right. It was all I could do not to just take a handful of them all day, every day, but I do feel that would potentially contribute to dysbiosis, since my immune system is so screwy.

-J

 

[Sushi]

I usually take 400-mg to 800-mg a day

Did you work up to that or just jump in? I've tried going up to as much as 300 mg without noticing anything but maybe more is necessary...and maybe I'm a different subset.

 

[JaimeS]

Did you work up to that or just jump in? I've tried going up to as much as 300 mg without noticing anything but maybe more is necessary...and maybe I'm a different subset.

400-mg at a time is my maintenance dose. If I don't take it, I notice in a few days that I'm feeling worse in an ill-defined manner: sluggish and more crashy.

It took a much higher dose to notice a big difference. And I did work up to it; I was taking a 100-mg pill, then a 100-mg pill twice a day, then one 400-mg pill once a day, then twice a day, then the mega-doses of 1200-mg (1.2-g) or 1.6-g, which is 3-4 pills at a go. Which, as stated above, I only use for emergency situations.

At the 100-mg and 200-mg doses I noticed nothing at all, and considered CoQ-10 a waste of time and money, FWIW.

-J

 

[Justin30]

It reminds me @Justin30, L- carnitine may be of help in case you haven't tried it. It didn't help me though

Thanks, I tried it right when I first got sick and still take it...I do feel it helps with brain function. L carnitine did nothing it was the Acetyl form that cross the BBB that works best for me....I tried cheaper brand of Alcar my last order and it is not good in comparison to others.

 

[Mary]

@JaimeS - how long have you been taking the Solgar CoQ10 at 400 mg. twice a day? Do you take it with meals? I've never noticed any difference with coq10, but have never taken more than 200 mg. a day either --

13 years ago NADH at 20 mg. a day was like a miracle for me, it gave me energy and stopped my crashing, and that lasted all of 10 days .... it cost about $75 a month at that dose but I would have gladly paid it if it had kept helping me. l-carnitine did something similar for me in 2002 - I can remember almost the exact dates! it felt so good, and that lasted about a week.

Thanks for all your help and information!

 

[Sasha]

....and shocking, the first time. I went from flat out, to cautiously sitting up, to cautiously standing, to 'taking it easy' the rest of the day, but otherwise all right. It was all I could do not to just take a handful of them all day, every day, but I do feel that would potentially contribute to dysbiosis, since my immune system is so screwy.

-J

This is all very interesting! I've just ordered some.

I've just been googling on CoQ10/dysbiosis but what I've seen so far seem to be recommending CoQ10 as a treatment rather than cause of dysbiosis but as you say, maybe it's dose-dependent.

What would be the mechanism? That the bugs in our gut eat the stuff instead of us? I'm wondering if removing it from the capsule and drinking it would mean it would be more likely to get absorbed direct from the stomach but I know zero about biology...

 

[JaimeS]

This is all very interesting! I've just ordered some.

I've just been googling on CoQ10/dysbiosis but what I've seen so far seem to be recommending CoQ10 as a treatment rather than cause of dysbiosis but as you say, maybe it's dose-dependent.

What would be the mechanism? That the bugs in our gut eat the stuff instead of us? I'm wondering if removing it from the capsule and drinking it would mean it would be more likely to get absorbed direct from the stomach but I know zero about biology...

That's my assumption. The same thing happened to me with B12. I was so excited because it made me feel so much better when I took it, but it was also disappearing super-fast. Like, if I didn't take it twice a day I fell over, fast. I knew I could not possibly be using all of that B12 myself.

I looked it up and yes, there are many pathogens that require B12 to flourish, including Yersinia and Candida, some of those gut pathogens very common in the ME/CFS population. I think it was an 'emergency treatment' at first, because the pathogens I had in my gut (tested and found, guys, not 'potential' pathogens) were sucking up all my B-vitamins, and my actual cells need that to survive, so supplementing was necessary. However, go too high too long and you potentially feed the infection to overgrowth, especially if you're taking antimicrobials to which one or more of your nasties are resistant. I was on high dose B12 at first, but now that I've beaten my infections back with a stick, I'm on a half a dose of B-vitamin complex per day.

I assume CoQ-10 would be similar. There's nothing to say that our cells would take it up preferentially over bacterial or fungal cells. Probably if the infection isn't rampant, it's an immune booster, but if those pathogens are high, it may be a different story.

I'm not really sure of this, it isn't something I've researched extensively; the B12 I'm pretty sure does help pathogens flourish if you take too much, at least in my particular case, but I have no earthly idea if I'm right about the CoQ10.

Jaime

 

[JaimeS]

@JaimeS - how long have you been taking the Solgar CoQ10 at 400 mg. twice a day? Do you take it with meals?
13 years ago NADH at 20 mg. a day was like a miracle for me, it gave me energy and stopped my crashing, and that lasted all of 10 days .... it cost about $75 a month at that dose but I would have gladly paid it if it had kept helping me. l-carnitine did something similar for me in 2002 - I can remember almost the exact dates! it felt so good, and that lasted about a week.

Thanks for all your help and information!

NP, @Mary ! I've been taking it for many moons. Hard to pinpoint, but definitely 6-mo at least. No drop-off in effect; if anything, less is more, now, but I think that's because I've been doing so much antimicrobial stuff.

And yeah, it costs me about $70 / month to do. Because I order if from iHerb, I get 'cash back' eventually, so it's really more like $62 / month, but still. It's pricey. I was hesitant to spend that much on a bottle...

...now that I'm thinking back, though, I had the 200-mg ones (also from Solgar) and I tried taking three of them at once, then an additional pill for a total of 800-mg after I waited and felt no ill effects. That was what lifted me from a crash the first time, and that was what prompted me to try to purchase pills at a higher dose.

I know I should pay more attention to taking them with food vs not, but I haven't. I usually take my morning pills with coffee, but it has some coconut oil and coconut cream in it, making it rich in fats, which may help me absorb fat-soluble CoQ10.

To those who are reading this, remember to start low and go slow! It seems like many readers have tried or are already taking CoQ-10 at a lower dose; I wouldn't recommend immediately going for a higher dose off the bat. Make sure you tolerate it first, and ramp it up over time if you feel that taking it is the best decision.

Jaime

 

[Mary]

Hi @JaimeS - just one more question (ha! - I think this is the last one) - you say you take it morning and night, so I presume the night dose doesn't interfere with your sleep? I'm sure you wouldn't take it at night if it did cause sleep problems but my stickler for detail brain wants to hear it from you

 

[JaimeS]

Hi @JaimeS - just one more question (ha! - I think this is the last one) - you say you take it morning and night, so I presume the night dose doesn't interfere with your sleep? I'm sure you wouldn't take it at night if it did cause sleep problems but my stickler for detail brain wants to hear it from you

It's certainly among the adverse effects that some say it makes them jittery. Never experienced this myself, though. If anything, I feel more relaxed when I take it, like my adrenaline doesn't have to carry me as far, now that I have more of what I need. Again, this is personal to me, and others may not experience the same effects if they have really different issues from mine, or different etiologies to their ME.

-J

 

[Stretched]

Maybe I missed it but I'm curious why the 'brand concoctions' haven't been mentioned, for example,
Douglas Labs' ATP 20 (Adenotriphosphate), Life Extension's Mitochondrial Energy Optimizer, and even
Swanson's ATP (these last 2 being proprietary compounds)? [Maybe it was these that someone referred
to as '...after taking the standard mito stuff... ?'

'Just thought I'd share my recent experience along these lines. Maybe someone else relates to my
dilemma.

I have taken the above for awhile and can't really discern their efficacy. Over the years my CFS had progressed to a base level of 8/10(worst), while taking maybe 10 supplements/day. I then got serious about nutricology and for the last two years experimented with dozens of supplements, using the texts and related research to build a protocol.

I'm currently at a 7-8 base level and taking the above in small doses along with an inclusive 27 supplements
two times daily, along with a couple of rxs. While any one effect gets lost in the sum effect(s), I'm hesitant to
stop because some easy exercise and activity endurance has increased and 'crashes' forestalled, relative to
pushing too far now and then.

I've created a Catch 22... . I want to cut this way back as it's getting old trying to treat affected systems, not to mention expensive. But, I don't want to face the potential of regressing - maybe without this regimen I would otherwise be sofa bound!

It's too much trouble to try an exclusionary experiment, dropping one pill at a time... . However, FWIW, I'm going to give it a go in cutting back on quantity and variety while increasing the doses of above.:thumbdown:

 

[Bob]

https://twitter.com/i/web/status/738795228266561538

http://www.healthrising.org/forums/...says-this-is-going-to-turn-very-quickly.4459/