PEM experiment = COQ10 Any volunteers?

[heapsreal]

@heapsreal Intersting as i think we seem to be more interesting in trying to create energy and not so much focus on recovery??

I try to keep my job while I increase energy and the eternal Hunt for a cure. I am trying to do both. I am in a stand still about the cure topic, I am kinda stuck. Everything I do feels like symptom control. But is hard to attack the issue when we do not know what the original problem is!

Im might not have worded it right, when i say recovery i meant recovery from activity ie recover the energy used and eliminated the waste products produced from making that energy like lactic acid and ammonia, this 'might' be a part of the issue with PEM??

 

[Gingergrrl]

I try to keep my job while I increase energy and the eternal Hunt for a cure. I am trying to do both. I am in a stand still about the cure topic, I am kinda stuck. Everything I do feels like symptom control. But is hard to attack the issue when we do not know what the original problem is!

@Inester7 I feel like I am also on an eternal hunt for a cure but sometimes symptom relief is better than nothing. I have found things that alleviate many of my symptoms and am grateful for those things even though my ultimate goal is to find the cure (I don't mean that I personally discover it but that someone does in my lifetime and I can apply their research and knowledge to me!)

 

[Seven7]

@heapsreal Well funny thing is My Latic acid pain goes away if I have energy. Since I increased COQ10 the pain has pratically gone away (some neck discomfort) but the whole leg painful muscle pain is gone (I have Parvo reactivation so remaining pain can be that).

I have reached my ceiling on COQ10 at 1600mg, I cannot go up because my Resting Blood pressure drop to the lowets I can have it so i don't get worse on OI. I have pretty normal life and no CFS symptoms or OI much as I stand right now. Also excercising (light walking about 20min a day + floor like pilates).

 

[Leopardtail]

@heapsreal The excersice physiologist told me to use alkalized water once a day, I use the ph balancer drops when I get too much latic acid pain like. But others use baking soda.

I go to a local support group at which more than half of members have low stomach acid - taking bicarb would aggravate that. Stomach acid is vital to mineral & B-Vitamin Absorption as well as immunity.

I would be inclined either to get your doc to check your stomach acid first (hard to get) or do a burp test (not totally reliable but any port in a storm).
If you do consider that you need to take bicarb, you might consider putting it in capsules that are resistant to stomach acid.

 

[Leopardtail]

@heapsreal Well funny thing is My Latic acid pain goes away if I have energy. Since I increased COQ10 the pain has pratically gone away (some neck discomfort) but the whole leg painful muscle pain is gone (I have Parvo reactivation so remaining pain can be that).

I have reached my ceiling on COQ10 at 1600mg, I cannot go up because my Resting Blood pressure drop to the lowets I can have it so i don't get worse on OI. I have pretty normal life and no CFS symptoms or OI much as I stand right now. Also excercising (light walking about 20min a day + floor like pilates).

CoQ10 has anti-oxidant as well as energy producing effects. Are you taking any other forms of antioxidant? If not you might consider taking other's to provide that effect thus needing less CQ10. Just a thought worth considering: carnitine spares and re-generates CQ10.

 

[Leopardtail]

@heapsreal Well funny thing is My Latic acid pain goes away if I have energy. Since I increased COQ10 the pain has pratically gone away (some neck discomfort) but the whole leg painful muscle pain is gone (I have Parvo reactivation so remaining pain can be that).

I have reached my ceiling on COQ10 at 1600mg, I cannot go up because my Resting Blood pressure drop to the lowets I can have it so i don't get worse on OI. I have pretty normal life and no CFS symptoms or OI much as I stand right now. Also excercising (light walking about 20min a day + floor like pilates).

Lactic Acid is produced when the body reverts to oxygen free energy generation (possibly as a result of Mito dysfunction) hence if you get energy generation up and running you would expect to see lower lactic acid (since less is produced to begin with). Sarah Myhill's new book talks about this stuff in reasonable detail. Available here: uk-link amazon-us kindle-Australia

We are all different, I find the exhaustion of ME far more annoying than the pain. I can toughen up and ignore pain however horrid, but exhaustion just plain stops me - like you I found that when I dealt with energy generation pain reduced as a side effect.

I also found the (for me) the energy generation supplements were far more efffective than anything else I have tried.

 

[heapsreal]

@heapsreal Well funny thing is My Latic acid pain goes away if I have energy. Since I increased COQ10 the pain has pratically gone away (some neck discomfort) but the whole leg painful muscle pain is gone (I have Parvo reactivation so remaining pain can be that).

I have reached my ceiling on COQ10 at 1600mg, I cannot go up because my Resting Blood pressure drop to the lowets I can have it so i don't get worse on OI. I have pretty normal life and no CFS symptoms or OI much as I stand right now. Also excercising (light walking about 20min a day + floor like pilates).

1600mg q10 wow, how do u afford that? The best priced q10 i have found is dr's best and the 100mg pills work out cheaper then the higher strength pills. DO you take the dose as one dose in the morning or split it through out the day?

 

[heapsreal]

Lactic Acid is produced when the body reverts to oxygen free energy generation (possibly as a result of Mito dysfunction) hence if you get energy generation up and running you would expect to see lower lactic acid (since less is produced to begin with). Sarah Myhill's new book talks about this stuff in reasonable detail. Available here: uk-link amazon-us kindle-Australia

We are all different, I find the exhaustion of ME far more annoying than the pain. I can toughen up and ignore pain however horrid, but exhaustion just plain stops me - like you I found that when I dealt with energy generation pain reduced as a side effect.

I also found the (for me) the energy generation supplements were far more efffective than anything else I have tried.

I wasnt really thinking of pain but removing these waste products quicker would spead recovery of energy and atp levels.
As for bicarb, it would be possibly used for something like pre exercise session maybe, not a daily occurrence. This is also where im looking into ammonia scavengers like okg to use daily and or post activity??

 

[Leopardtail]

I wasnt really thinking of pain but removing these waste products quicker would spead recovery of energy and atp levels.
As for bicarb, it would be possibly used for something like pre exercise session maybe, not a daily occurrence. This is also where im looking into ammonia scavengers like okg to use daily and or post activity??

okg = ????

 

[Seven7]

1600mg q10 wow, how do u afford that? The best priced q10 i have found is dr's best and the 100mg pills work out cheaper then the higher strength pills. DO you take the dose as one dose in the morning or split it through out the day?

That is why I stop every time, is not because it doesn't work but because it is expensive! I take it 3 times a day in doses of 400mg then another at 4pm the latest. I pay about US$50 (but mostly find it at 50%) but sometimes do have to pay full price. I cannot even do 15 days on the $50.

The way I see it, is cheaper than me stop working or going constantly to doctor.

 

[heapsreal]

okg = ????

Ornithine ketogluterate

 

[Gingergrrl]

I totally forgot about this experiment and had kept my CoQ10 at 200 mg/day. If I can remember, I am going to double it to 400 mg/day tomorrow and see if it makes any difference.

Also, @heapsreal, what is Ornithine ketogluterate? Do you take it for fatigue/PEM and has it helped you?

 

[heapsreal]

I totally forgot about this experiment and had kept my CoQ10 at 200 mg/day. If I can remember, I am going to double it to 400 mg/day tomorrow and see if it makes any difference.

Also, @heapsreal, what is Ornithine ketogluterate? Do you take it for fatigue/PEM and has it helped you?

I havent used OKG/ornithine ketogluterate yet. One of the reasons i am looking at trialling it is that it can help lower ammonia which is a factor in fatigue, insomnia, neuropathies etc. I guess im trying to speed up recovery(pem) from activity and hoping it helps sleep. It also helps keep the body in an anabolic state, so helps with general repair of the body. It seems to have multiple functions. My doc has advised me to start with 500mg and increase slowly. I just mention this as several online sites recommend much higher doses.

Can be pricey for a supplement but this place sells it for a good price http://www.nutrabio.com/mm5/merchant.mvc?Store_Code=NOS&Screen=PROD&Product_Code=23327
But its more economical to buy it in a bulk powder form which im going to do and cap them myself, http://purebulk.com/l-ornithine-alpha-ketoglutarate-okg.html#.U7uBwZSSySo

Just mentioning the sites that carry this as there arent many and it is expensive for a supplement.

Keep us updated on your q10. If u have a good priced source of q10, please share. I feel like a tight arse always mentioning cost but all these supps and meds add up to a small fortune.

 

[Gingergrrl]

Keep us updated on your q10. If u have a good priced source of q10, please share. I feel like a tight arse always mentioning cost but all these supps and meds add up to a small fortune.

@heapsreal Oh believe me, you are not a "tight arse" and I understand how expensive all these supplements are! The brand of CoQ10 that I use is called "Raw CoQ10" by "Garden of Life" brand. I got it at the Vitamin Shoppe (in the US) and this was the first bottle I ever bought. I discussed it at length with the guy at the store and he recommended it b/c it came in a lipid delivery system so it was absorbed better even if you didn't take it with food (which I do.) I have not noticed anything (good or bad) from taking 200 mg/day which is why I am going to increase it tomorrow if I can remember. I honestly do not remember the cost.

 

[Gingergrrl]

Just wanted to post that I doubled the coQ10 today and took 400 mg instead of 200 mg (separated into two doses.). I will let you guys know if I notice anything.

 

[Seven7]

I overdid I mean BIG TIME. I forgot I have CFS and I am crashed BUT the bizarre thing is that I don't have symptoms worsening (PEM), just inability to produce energy and that burning in muscle as I can't walk long anymore. The heaviness and burning gets as if I am doing 200000 pounds of weights in my legs. Nothing else, since I know I have issues with potassium regulation (my observation) I will get back on my Electrolyte, I KNOW I was not cured but it felt like it so I stopped a few weeks ago. Will get back on it.

 

[Gingergrrl]

So far not noticing any improvement from doubling the coQ10 and actually feeling much worse today (although I do not think there is any connection and more b/c I have been overdoing it trying to prepare for this trip.)

 

[Seven7]

So far not noticing any improvement from doubling the coQ10 and actually feeling much worse today (although I do not think there is any connection and more b/c I have been overdoing it trying to prepare for this trip.)

Are you using the Gel type? what brand are you using??

 

[heapsreal]

I think moving my q10 to 400mg in the morning has helped abit but finding bumping up my acetyl carnitine from 500-1000mg in the morning with the q10 has improved energy for 6-8hrs. I ran out of petrol after that so needed a lie down.

Next time i order q10 im going to get it from vitacost 400mg x 120 for $45, the second bottle is half price and for us aussies the shipping is cheap, about $10.

I have some ribose and creatine tabs that i will add later. I dont think there is anything left for mitochondria

 

[smileyface]

Been reading this thread with interest as I am a huge believer in natural supplements alongside prescribed drugs (or maybe instead of). I am going to try the COQ10 and see if I notice any energy difference. I will report back too