Did I just slam the door on a PEM episode?!

[SOC]

Riboflavin is helping me too. I need to try more frequent dosing of CoQ10. I've been taking it once per day.

You might want to be careful with that. Many people can't sleep if they take CoQ10 after noon. Since the half life of CoQ10 is about 35 hours, and the peak amount occurs at about 5-6 hrs, it shouldn't be necessary to take it more often than at breakfast and lunch. One dose in the morning would probably work fine, too. I guess the best thing is to experiment to see what works best for you.

Maybe you can answer my questions then. What kind of fat does it need to absorb better? Wouldn't it work just to eat fats at the same time? I was hoping I could eat some coconut oil or nuts with my capsule to take care of that.

I don't really know. All I know is the powdered form didn't work at all for me. Switching to oil-filled get caps helped some and moving to high-dose oil-filled caps helped a lot.

I think @jeff_w uses a powdered form of CoQ10 and also eats a high-fat ketogenic diet, so he might know more.

 

[L'engle]

@SickOfSickness I've had insomnia from it before so I'm trying a small amount. It does have some effect for me. But I think it is already interfering with my sleep after ten days. May try a higher amount just to see what happens.

 

[SickOfSickness]

Thanks @SOC and @L'engle. I will experiment. I'm mad at myself for not realizing the CoQ10 was helping. I thought it was the B12 that was helping. I can't remember if I tried 400mg CoQ10 before.

 

[SOC]

I'm still trying to sort out the correct CoQ10 dose for me. Prior to this latest PEM episode, 1800 mg ubiquinone (=600 mg ubiquinol) seemed to be doing the trick. Since the PEM hit, though, I seem to need 2400 mg ubiquinone (=800 mg ubiquinol). Last week I tried going down to 2100 mg ubiquinone equivalent (1200 mg ubiquinone, 300 mg ubiquinol), but it didn't seem to be enough and I was having some relatively mild PEM symptoms. This week I went back up to 2400 mg ubiquinone equivalent (600 mg ubiquinone, 600 mg ubiquinol) which seems to be relieving all the PEM symptoms.

Since my PEM episodes can easily last for a month, I'm working with the hypothesis that my body is still in PEM mode and that during PEM mode I need 2400 mg ubiquinone equivalent. Once I get past PEM mode, 1800 mg ubiquinone equivalent is probably sufficient.

I'm finding it interesting that whatever is going wrong during PEM still seems to be going wrong, I'm just temporarily alleviating the symptoms with very high dose CoQ10. So far, if I cut back the dose, the PEM symptoms come roaring back immediately and with a vengeance. My expectation is that eventually I'll be able to go back to my normal high dose, but it may be a month or two given the normal length of my PEM episodes.

Just to be clear -- I do not believe that I can return to normal life, be in a constant state of PEM, but alleviate all the symptoms of PEM with high dose CoQ10. I think that would be very unwise, since there seems to be something still going very wrong and it can't be good to keep my body in that state continuously. I do think high dose CoQ10 has raised my PEM threshold in general, but clearly I can still PEM myself. The very high dose seems to allow me to manage at my normal (much below a healthy person normal) with caution and some extra rest during PEM and without symptoms that put me back to bed and nonfunctional. This is no magic ME cure. At best it is helpful in general and a temporary patch during PEM episodes.

 

[whodathunkit]

@SOC and everyone in general: just chiming in because I'm really pleased with the results I've had in alleviating PEM in the last 1.5 or so years since I hit PR. I had gotten to where I pretty much couldn't exercise at all beyond slow-walking my dogs. This forum is both a goldmine and a godsend, for sure.

Alleviation of PEM began when I got methylation going with Freddd's protocol. I noticed a significant boost in energy when I added adb12 and LCF to the mfolate and mB12 (which I tried first). The energy boost was also accompanied by jitters, anxiety, and mild insomnia, plus a few flu-like crashes. It was not a comfy stable energy but still was better than my normal fatigue + ennui. The LCF/adb12 did not completely alleviate PEM but it was after these that I began to tolerate exercise better, and when PEM came as it always did, it was different. Shorter and not as bad. After a short time I began to feel well enough to attempt a bout of aerobic/strenuous exercise 2-3 weeks after the previous attempt, instead of having to wait two months or longer between (the almost heartbreaking) attempts. I also began to experience an actual desire to move my body instead of exercise being something I knew I "should" do for my own good, but still had to drag myself to it. The longer I stuck with the Deadlock the better it all seemed to get.

High dose ubiquinol added the next dimension to energy/exercise tolerance/PEM diminishment. I started taking it after some dental surgery to help heal my mouth, and unexpectedly discovered a great little boost. I had to take at least 600mg/day of ubiquinol to get that boost, though. Under that dose and it didn't seem to help with energy although my mouth and gums seemed to like it. Interestingly, before this I had written off CoQ10 as something that didn't really work for me, although I always took a couple hundred mg/day on faith, since it was considered by all to be a crucial antioxidant. But I had experimented with high-dose several times in the past and got zero effect from it. Then suddenly, after I'd done some work on methylation and mitochondria, it worked for me like I'd read it was supposed to work. So I think I had to correct some methylation and possibly mitochondrial problems before I could respond to it. As @SOC noted, it's not a cure-all, but if you can get all the right things in place so it does work, CoQ10 is a great supplement.

I'm currently taking the MitoQ brand of CoQ10 and liking it a lot. I think it is all that, and if you respond to ubiquinol it's an even better addition to a regimen targeting energy, activity tolerance, and PEM. I'm taking the recommended 10mg/day dose but am going to experiment with half that since I think it makes me a little speedy and I'm not sure I need the whole 10mg. While pricey, MitoQ seems to be equivalent to or maybe a little cheaper than high-dose ubiquinol, simply because of how much ubiquinol you have to take to achieve a noticeable boost. When you compare the two different forms and how much you have to take, the price is a lot more equal than if you look at price alone.

Thiamine + choline seem to fill in another big piece of the exercise/activity tolerance puzzle, but please don't ask me how or why. I still haven't figured it out. My brain still isn't firing on all cylinders, and when something seems to work for me I'm not always sufficiently bothered to figure out why unless I have time. I just keep doing it and don't worry about it. Seriously, I've read up a bit on it and think I have an inkling but am thinking too slowly to have the time to piece it all together. I just know that boosting these two things seemed to add a whole other crucial dimension to my exercise tolerance. Worth noting is that the initial boost was followed by a severe crash that seemed to be a gastrointestinal flu, but after I recovered from that flu my stable (i.e., long-term) activity tolerance improved remarkably and PEM became very short to almost non-existent. I still have to be careful so I don't run myself down, but I'm now exercising regularly several times per week and getting stronger every day.

The other final thing I think was a factor in alleviating PEM for me was fixing my gut. A long gnarly journey, but worth it. Not there yet but good progress.

Just my $0.02. Sayin' because most of us are on similar journeys, just at different paces.

 

[ahmo]

While pricey, MitoQ seems to be equivalent to or maybe a little cheaper than high-dose ubiquinol, simply because of how much ubiquinol you have to take to achieve a noticeable boost.

Any idea how much the equivalent ubiquinol dose would be? thx

 

[whodathunkit]

Any idea how much the equivalent ubiquinol dose would be?

Nope. But I can tell you that 10mg/day of MitoQ seems to boost me more than 600mg/day of ubiquinol (Jarrow). 10mg MitoQ + 200mg thiamine + 50mg P5P = just to the edge of tipping into overstimulation. Not quite, but almost. Other things I take like FMN may be feeding into that, too, but I think those are the primary boosters.

I am going to cut back on the MitoQ and P5P a bit, see what happens then.

 

[Alea Ishikawa]

@SOC - Just wanted to say thank you for highlighting high-dose CoQ10. I've started taking 800mg+/day and found it definitely helps with PEM symptoms.

Note: I tried smaller doses earlier (100-400mg/day) with no noticeable effect. The dose definitely makes the difference.

 

[Hip]

I have just noticed there are some very good deals on bulk Q10 powder on aliexpress.com (which is a sort of Chinese eBay). Typically around $200 for 500 grams of 98% Q10 powder.

For comparison purposes, Q10 ubiquinone powder bought at purebulk.com costs around $29 for 25 grams, and $202 for 250 grams.



In the above Aliexpress items for sale, they say their Q10 is ubiquinol, but I wonder if it is actually Q10 ubiquinone.

Ubiquinol is more expensive that ubiquinone, but ubiquinol is better absorbed (by a factor of 2, ref here), and ubiquinol is also the active form of Q10.

Note that ubiquinol when exposed to air will turn back into ubiquinone. So unless the above items are supplied in an air-tight container, it won't be ubiquinol.



Incidentally, according to a patent discussed in this thread, mixing alpha lipoic acid with ubiquinone will convert it to ubiquinol, and this mixture is a stabilized form of ubiquinol that does not turn back to ubiquinone when exposed to air.

 

[whodathunkit]

Incidentally, according to a patent discussed in this thread, mixing alpha lipoic acid with ubiquinone will convert it to ubiquinol, and this mixture is a stabilized form of ubiquinol that does not turn back to ubiquinone when exposed to air.

Nice! So I wonder if it works the same way in the body...? Question doesn't seem to be definitively answered in the thread. Any reckoning one way or another from your prodigious brain, @Hip? Trying to read that patent just now is making my eyes cross.

 

[bertiedog]

I really like the effects of Coq10 but I have gotten insomnia the last few times, despite taking it early. I'm not giving up on it though as it's one of the most promising supplements I've tried. Time to trial it again in a small amount soon.

I have the same problem if I go over 100 mg which I take daily.

Pam

 

[L'engle]

I have the same problem if I go over 100 mg which I take daily.

Pam

Something I discovered is that it seems to take most effect 12 hours after I take it. So I take it just before bed the day before I want the energy from it, and start feeling awake the next morning. It's still tricky not to get insomnia from it and I don't take it if I have any other side issues to deal with that effect sleep, which right now means I haven't take n it in a few months.

 

[Hip]

@whodathunkit
Precarious is more the way I would describe my cognitively dysfunctional brain!

I think this way of making ubiquinol is interesting, but might be more trouble than its worth.

 

[whodathunkit]

Precarious is more the way I would describe my cognitively dysfunctional brain!

Well, they both start with a "P" so it should work.

Seriously, you seem to do pretty well. Better than me, at any rate. I get a lot out of your posts.

Sometimes I wonder what we would all be like if our brains performed up to our pre-illness expectations? A forum of geniuses!

I guess what I really wonder is if you simply take ALA at the same time you take ubiquinone if there's a catalytic reaction in the body that way. That doesn't seem too troublesome.

 

[Hip]

I guess what I really wonder is if you simply take ALA at the same time you take ubiquinone if there's a catalytic reaction in the body that way. That doesn't seem too troublesome.

I don't think ubiquinone and ALA will react together in your stomach, because ALA is not water soluble. I think you'd need to dissolve both in a solvent in which they readily dissolve to get them to react. They are both soluble in ethanol, so possibly mixing them together a some vodka might work. They also mention limonene in the patent, and they may be implying that this is a good solvent to use to dissolve ubiquinone and ALA (I have a lot of ADHD, so reading long documents is hard work for me).

If my precarious brain understood correctly, the patent said ALA and ubiquinone should be mixed so that there is "a molar equivalent of each of alpha lipoic acid and CoQ-10", which I guess means a 1:1 molar ratio.

Now one mole of ALA weights 206 grams, and one mole of ubiquinone weights 863 grams (you can get these figures just by putting "ubiquinone molecular weight" into Google).

So that means for every 1 gram of ALA, you would mix it with 863 / 206 = 4.2 grams of ubiquinone.

So if you mixed ubiquinone and ALA and in a ratio of roughly 4:1 in vodka, it might form ubiquinol.

I am not sure how fast the reaction will take place (if indeed it does); it might be best to leave the mixture in vodka overnight to make sure it reacts, or heat up the vodka mixture in a microwave for a minute, as heat usually speeds up chemical reactions.

 

[whodathunkit]

@Hip, thanks! That sounds like it might be worth trying, for sure.

 

[bocheball]

@SOCThe coq10 works I have gone as high as 1200mg ok. I have no doubts it does that and more for me. I always have to reduce because of money not becuAse of efficacy. I also asked DR K if my body would stopped producing if I take the 1200mg as a regular dose and she said that your body will not stop its own production ( the main reason I always went down to the 800mg).

Hello, Which brand of Co10 do you use? Are you still taking it? Thanks Robert

 

[Seven7]

Hello, Which brand of Co10 do you use? Are you still taking it? Thanks Robert

Yes I cannot stop CQ10 for me works so great I use nature's bounty, See link bellow. Brand makes a difference,
Also, Some plp do better on the active form, I do better on this COQ10 form. I would love to be able to afford 1200 but I do only 800 mg(due to cost). Dr told me to lower to 200mg eventually but I still feel a huge difference if I go down.

https://www.walmart.com/ip/Nature-s...75035&wl11=online&wl12=46108136&wl13=&veh=sem

 

[ljimbo423]

Hello, Which brand of Co10 do you use? Are you still taking it? Thanks Robert

Hi Robert and welcome to Phoenix Rising! I saw your introduction post.

I would just like to share my experience with coq10. I slowly worked my way up to 400 mg a day, over the last few weeks. It has stopped the flu-like flares I use to get after I would go out walking, for even short walks.

These flares would usually last 4-5 days, feel just like the flu and keep me in bed for those 4-5 days! I have been out again walking, several times in the last couple of weeks with no sign of the flu-like flares.

So the coq10 has made a HUGE improvement in the quality of my life! Again, welcome. There is so much knowledge and experience here to learn from!!

Jim

 

[ljimbo423]

Also, Some plp do better on the active form, I do better on this COQ10 form.

I also do better with the regular coq10 than the more expensive active form. Seems strange to me but the proof is in the pudding as they say!

Jim