Crashing seems to have stopped & energy has increased

[Mary]

Sorry about the science overload! It's basically that tryptophan will produce beneficial neurotransmitters if given the right environment, whereas that quote made it sound as though one needed to avoid tryptophan-derived neurotransmitters.

Check out this article: http://www.ncf-net.org/forum/Fword.htm - it's short but packed with information, it's an easy read, even for me. It explains more about the role of tryptophan in CFS and CNS fatigue.

I tried the BCAAs with very good results so wouldn't let sloppy wording in one article deter me from giving such a benign substance a try (and glutamine too, which I also believe is very important)

Re the fungus reference - I may have mentioned that I was taking AHCC for my immune system, I know I've written about it a couple of places.

 

[MeSci]

Check out this article: http://www.ncf-net.org/forum/Fword.htm - it's short but packed with information, it's an easy read, even for me. It explains more about the role of tryptophan in CFS and CNS fatigue.

I tried the BCAAs with very good results so wouldn't let sloppy wording in one article deter me from giving such a benign substance a try (and glutamine too, which I also believe is very important)

Re the fungus reference - I may have mentioned that I was taking AHCC for my immune system, I know I've written about it a couple of places.

Ah - I got my AHCC mixed up with my BCAA!

Only had a quick look at your link, but it looks as though it would take time to filter out the non-human stuff (as it may be completely irrelevant to humans) and the stuff that only looks at simple fatigue, which may also be irrelevant to ME.

 

[JaimeS]

Yes, I'm still taking high-dose (1200mg) CoQ10

Whoa! Thanks for including that, SOC. I think I'm taking 1/3 of that, and while I consider it 'balancing', it doesn't prevent PEM for me.

I'll try upping it and see how that works. (Low and slow - I know.)

-J

 

[SOC]

Whoa! Thanks for including that, SOC. I think I'm taking 1/3 of that, and while I consider it 'balancing', it doesn't prevent PEM for me.

I'll try upping it and see how that works. (Low and slow - I know.)

-J

Actually I'm taking 1800 mg daily now. 1200 mg is okay when everything is perfect, but I seem to need 1800 mg under more typical conditions.

FYI, I talked to Dr Klimas at some length last week about high dose CoQ10 and this is what I came away with:

• Use Kaneka-manufactured CoQ10. Many brands use it so it's not hard to find.
• Split the dose between ubiquinone and ubiquinol. Unbiquinol is 3x better absorbed, or more effective, so you only need to take 1/3 as much. For me that means 900 mg ubiquinone and 300 mg ubiquinol. One or the other is not as good as some of each.
• Work up to a high dose and take that for a while to build up stores, then see if you can reduce dose. Starting low doesn't seem to do the trick because many of us are so depleted we never get up to sufficient amounts. "Top up" your stores first, then worry about finding the correct lower maintenance dose.
• Once you've taken CoQ10 for a while, then think about adding "mito foods" -- acetyl-l-carnitine, etc. There are a number of commercial products. Try them and see what works best for you. Make sure you get PQQ, though. That appears to help build more mitochondria, which we seem to need.

 

[JaimeS]

@SOC,

I have been taking it for a long time, and I didn't notice much of a shift at first - but eventually I realized that if I went without, I felt worse.

Random crashity-crash just now, so I took 600-mg. Mine is the ketone form, so I should probably take another 200-mg! Although it did pull me out of it - I went from lying utterly still in bed to sitting up at my computer again (obviously) without discomfort.

I think that many are under-dosing with this, because I've heard several times that it is entirely ineffective.

Btw, my normal dose is 200-mg of ubiquinone per day!

-J

 

[SOC]

[
Btw, my normal dose is 200-mg of ubiquinone per day!

I took 200 mg daily for several years but I never noticed a difference. I was about to quit taking it as it was expensive and appeared useless, but decided to try doses used in known mitochondrial disorders before I gave up on it entirely. Somewhat to my surprise, the high dose did make a difference for me.

A general warning to anyone thinking of trying high dose CoQ10 -- high dose CoQ10 is not for everyone. I've heard quite a few reports of people feeling very wound up and jittery on doses above 200 mg. My guess is that it comes down to whether you have mito dysfunction or not. If you do, the CoQ10 probably helps. If your CoQ10 levels are already okay, high doses probably over-rev your system and make you feel crappy. I'd work up to the higher dose rather than go straight to it in case you're one who doesn't do well on higher doses.

 

[*GG*]

I took 200 mg daily for several years but I never noticed a difference. I was about to quit taking it as it was expensive and appeared useless, but decided to try doses used in known mitochondrial disorders before I gave up on it entirely. Somewhat to my surprise, the high dose did make a difference for me.
/QUOTE]

Hmm, think I should try this. I take about 200mgs a day now, and 100mg more when I exercise, think I should try more.

GG

 

[JaimeS]

I've heard quite a few reports of people feeling very wound up and jittery on doses above 200 mg.

Which explains why they sell it at 200-mg, but it makes me feel the opposite. When I took the 600-mg, there was a clear feeling of a need being met. I felt supported and relaxed at the same time that my energy levels rose and steadied.

-J

 

[SOC]

Which explains why they sell it at 200-mg, but it makes me feel the opposite. When I took the 600-mg, there was a clear feeling of a need being met. I felt supported and relaxed at the same time that my energy levels rose and steadied.

-J

Ditto. I'm definitely not in the jittery group, so I can go up to high doses, if I can afford it. You can buy 600 mg caps and they're a little cheaper per dose than 200 mg. I haven't seen higher dose caps yet

 

[JaimeS]

Thanks, @SOC. Obviously my electron transport chain train is a little slow on the track, and anything I can do to pick it up a bit is good. Although it's interesting; I can't take my Healthy Feet and Nerves at night, because it's got Benfotiamine which, as I understand it, is a B-vitamin derivative. So there are some things that can make me too jittery if I don't handle them right. CoQ-10 just seems like it's not one of them.

-J

 

[roller]

In my case unfortunately I cannot take part in the investigation, as my PEM is caused by mental exertion rather than physical exertion (I can run a mile without problem, but just 3 or 4 hours of light social conversation will leave me exhausted the following day). I have yet to find any reliable supplement that mitigates my mental exertion PEM well; though I keep trying different supplements experimentally, taken just before I do some socializing.

same here. i can do analyzing on crime cases and what not, and im good, logical, creative, much awareness and attention to detail.

i also struggle to explain this.
other things, that are more "complex" in some way, e.g. answering an email (lol), i cant.
it is, when there are more disjunct/independent steps included, i suppose.

i think a typical example is the filofax to do list.
at times, i wrote every little bit of something on the list - and even then, i didnt get anything managed.
at the same time, i may hyperfocus on something i find totally interesting and important - as a plane crash or a murder case. though, this also has a lot of complexity one would think.
it seems so weird and unexplainable, but it has some pattern - i just dont understand (or see) it.

and with co q10. i tried pretty much first thing, years ago.
i felt bad, just overall bad. the 1000 mg i could not tolerate at any time, the 300mg i could tolerate when taking in the early morning. after 11 am i went badly downhill.

 

[roller]

and the same with talking.
it IS physically very exhausting to me, still, but has become ways better.

and talking to someone is also mentally exhausting, because its overwhelming.
the same thing as with tasks, somehow.
its impossible to get the thoughts "in order" and articulate them.
filling in a todo-sheet with single thoughts would be too exhausting as well.

as one chunk, that is impossible to break down into its pieces.

 

[jlynx]

Taking 5 grams of BCAA's with Glutamine helped me greatly in regards to stamina- it also gave me a tiny bit of energy and provided more mental clarity. It was great because I was better when I took a short beach vacation so I was able to do more and enjoy it. However, it only lasted about a month or so and now they have zero affect.

 

[JaimeS]

I should add to this thread that after a good, strong dose of abx, that much CoQ-10 became waaayy too much. It even felt (entirely instinctively, I should add) as though it caused a bit of infectious rebound when I took it. Apparently, some bacteria utilize it... and some actually produce it! Wouldn't it be cool to be able to get a probiotic that make its own?

Geneticists are working on it.

-J

 

[MeSci]

I should add to this thread that after a good, strong dose of abx, that much CoQ-10 became waaayy too much. It even felt (entirely instinctively, I should add) as though it caused a bit of infectious rebound when I took it. Apparently, some bacteria utilize it... and some actually produce it! Wouldn't it be cool to be able to get a probiotic that make its own?

Geneticists are working on it.

-J

In case I haven't already said this in this thread, I appeared to be unable to tolerate even 100 mg of Co-Q10, suffering dizziness, hunger and difficulty controlling bowels.

In her book Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition, Erica Verrillo says of Co-Q10:

USES IN CFS/ ME. CoQ10 is one of the most frequently used supplements for the treatment of CFS/ ME-related fatigue because of its importance in the production of adenosine triphosphate (ATP), the cellular source of energy. In addition to reducing fatigue, CoQ10 may alleviate muscle weakness and pain. It is also one of the few supplements that seems to reduce cognitive dysfunction. Its role as a free radical scavenger may lead to improvement in immune responses in patients with CFS/ ME. Although its effects as a natural antihistamine have not yet been specifically explored in CFS/ ME, patients with allergies may benefit from CoQ10.

There is also evidence that CoQ10 is deficient in CFS/ ME patients. In 2009 Maes et al measured plasma CoQ10 in 58 CFS/ ME patients. Compared to normal controls, the CFS/ ME group had values significantly below the lowest recorded levels of the control group. Patients with very low levels of CoQ10 suffered significantly more from concentration and memory disturbances. The researchers concluded that lowered levels of CoQ10 play a role in the pathophysiology of ME/ CFS and that “symptoms, such as fatigue, and autonomic and neurocognitive symptoms may be caused by CoQ10 depletion.” Their results suggested that patients with CFS/ ME would benefit from CoQ10 supplementation in order to normalize the low CoQ10 syndrome.

PROTOCOL. Nearly all CFS/ ME physicians recommend supplementation with CoQ10. CoQ10 can be taken in a single dose or divided into two doses taken at different times during the day. There is evidence that dividing the dose is more effective than taking it all at once. The normal recommended dose is between 30 and 200 mg/ day. Dr. Lapp and Dr. Klimas recommend 120 mg a day. Sublingual CoQ10, reputedly more effective against cognitive dysfunction, may be taken at higher doses. Oral CoQ10, although primarily absorbed by the digestive tract and liver, is also effective for some patients. The oral dosage varies, but is usually 25 to 50 mg/ day. It may take up to eight weeks to see effects from oral CoQ10. Because CoQ10 is fat-soluble, it should be taken with a meal that contains some kind of fat or oil.

PROS. Taken at lower doses, CoQ10 is a supplement with very few side effects. Patients report improvements in energy, stamina, light-headedness, and syncope (fainting). Dr. Lapp reports that half of his patients see improvement after taking CoQ10. A significant number of patients, particularly those with fibromyalgia, find that CoQ10 increases their energy over the course of the day.

CONS. Some patients report that CoQ10, while giving them an initial energy boost, also increases insomnia and causes jitters. Some people report, paradoxically, that CoQ10 produces exhaustion, although this effect may be more common in the acutely ill than in those with stable symptoms. CoQ10 lowers blood sugar levels, which may be problematic for patients with hypoglycemia. High doses can cause flu-like symptoms.

 

[mgk]

I wonder why CoQ10 is low in the first place. Is it really a deficiency in that there's increased need because of the disease, or is it a deliberate downregulation of metabolism because the body senses that there's another problem?

 

[JaimeS]

I wonder why CoQ10 is low in the first place. Is it really a deficiency in that there's increased need because of the disease, or is it a deliberate downregulation of metabolism because the body senses that there's another problem?

One of the things I've noticed about this illness is that to assume the body is doing something "by mistake" is a mistake. Sometimes I think the body is trying to starve the infectious organism the only way it can, when I come across info like this.

I appeared to be unable to tolerate even 100 mg of Co-Q10, suffering dizziness, hunger and difficulty controlling bowels.

I do think it can feed infection. Right now I'm taking it at the same time as abx, and what I HOPE is happening is that the non-bacterial cells (my cells!) that aren't dying off are making use of it. If I don't take some pill that helps with energy while on abx, I end up in bed. However, after the abx is over, if I continue with Co-Q10, then exhaustion gets *worse*, not better.

Of course we are working from 99.9% assumption, but it seems that it may be supporting the 're-bloom' of the bacterial infection, then.

As always, I'm kind of tempted to throw my hands in the air in exasperation, because there is so little proof of anything, and my analytical self wants proof...

-J