Muscle stamina/fatigue - what works?

Mary

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Thanks, Mary, and I was just curious. When I first got sick, I took D-Ribose for over a year and it did absolutely nothing for me. But I have not tried whey or BCAA's. I was wondering if there is something that will give my muscles the final push so I open child proof bottles or hold a hairdryer (just as an example). I'd like to strengthen my diaphragm/breathing muscles further as well. So far (for me) only IVIG has been able to do this but it's like I am at the mid-way point and am hoping it can still do a lot more!
I hope so too @Gingergrrl! When are you supposed to see results from the Rituximab?
 

taniaaust1

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I was curious to all in the thread, do any of these products (Ribose, Whey or BCAA's) help with increasing actual muscle strength or are they more for fatigue? Like if I am not strong enough to open a child-proof pill bottle (sadly for real), would they help with that?
For me the Whey increased endurance/stamina eg I could do things for a bit longer, it didnt make me stronger thou. Also helped me to feel a bit more healthier.

Ribose does nothing for me
 

taniaaust1

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but received my whey today ( https://simplyteras.com/product-categories/organic/ ) (note to tania that they have goat whey, have you tried that?).
No I havent tried goat whey. Cause of what Dr Cheney has said, I wouldnt randomly try brands of whey but only the brands which have been recommended for us (the one I had was a specific brand my own ME/CFS specialist recommended and was a different one to th several Dr Cheney recommends).

Should I try these one by one? If so, how long? Should I stop the coQ10 and try the whey only to see if it helps? I'm so desperate to get some energy back, but I want to be spending money on what WORKS. If all 3 work that is fine, but I don't want to take all 3 just because I have no idea which is benefiting and which isn't.
I would only ever trial 2 things together IF they are known to work better in combo.. otherwise its just to hard to know what is doing what and we can get a bad response to the most innocent seeming thing.
 

Alvin2

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Ribose/Q10 help a bit but don't add strength, they add energy. If you work muscles with that energy they will get stronger in time but those of us with severe ME/CFS can't spare that energy. Making a meal or taking a shower or getting groceries is far more important then muscles.
That said they don't add enough energy to function normally, Ribose adds enough energy to reduce PEM quite a bit and i can shower and not be fried all day and paying for it for days. I typically still would not try to shower and buy groceries in the same day.
That said being unable to open a bottle should come back if it will work (feeding base level muscle), but opening a tight bottle will still fry you.

BTW Ribose is way pricier in Canada, 500g is about $70 :aghhh:
I bought some to try and it works but i don't know what i was thinking, i can't keep taking it once i run out :bang-head:
 

Alvin2

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cant u online order it from another country?
Possibly, though i am wary of no name brands, i don't like adulterated products.
Plus shipping to Canada can be pricey and many Amazon products won't ship to Canada
 

Strawberry

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have you read how long you're supposed to take it? I'm so sensitive to supps and meds that I tend to be quick to judge, and generally that works, but sometimes I may be missing out..
I don't know. I need to read more, and maybe ask the responders? I'm not getting any bad signs so far, so I will keep taking it (and upping it) until I decide its not helping-maybe 3 months. Then if it doesn't work, I will try ubiquinol. I think it was grapes that suggested a liquid ubiquinol brand, I will try that first if the ubiquinone does nothing.


@taniaaust1 How quickly did you notice whey helping? So sorry that you had such a bad reaction when it was making you feel better. It sounds like it is the amino acids in it that helps, so maybe the pills Mary just posted ^^ would work? Have you tried anything like that?
 

Gingergrrl

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I hope so too @Gingergrrl! When are you supposed to see results from the Rituximab?
It is very hard to predict and my second dose is in five days. I think it will be somewhere between 3-6 months of the second dose but it could be earlier (or it could be never)!

I am going to keep following this thread although it sounds like most of these products increase energy and fatigue vs. actual muscle strength which is my issue.
 

Mary

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Possibly, though i am wary of no name brands, i don't like adulterated products.
Plus shipping to Canada can be pricey and many Amazon products won't ship to Canada
@Alvin2, Here are a couple of bulk d-ribose products I've taken, both are very good: https://www.amazon.com/BulkSuppleme...=UTF8&qid=1501187167&sr=8-3&keywords=d-ribose and

https://www.amazon.com/WellBodyNatu...=UTF8&qid=1501187167&sr=8-4&keywords=d-ribose

Both are way cheaper than what you are paying. I have no idea what shipping would be but both say they are "fulfilled by Amazon" so hopefully they could ship to you, maybe?

It is very unfortunate that d-ribose is one of the pricier supplements! :aghhh: It's a little ironic, you have Americans going to Canada for cheaper prescription drugs ...
 

taniaaust1

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@taniaaust1 How quickly did you notice whey helping? So sorry that you had such a bad reaction when it was making you feel better. It sounds like it is the amino acids in it that helps, so maybe the pills Mary just posted ^^ would work? Have you tried anything like that?
No i havent tried any amino acid pill things

The whey helped quickly, within a week I could notice it was really helping and I was so excited about that.. just to feel "healthier" something I wasnt used to feeling. I was having quite a bit of it, as a meal replacement thing as recommend by my dr as I was struggling to make meals (so having it instead of 2-3 meals). The one I used has been used in hospitals as a complete meal replacement. Iso whey Complete (by PhamaFoods I think it was)
 

Strawberry

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No i havent tried any amino acid pill things

The whey helped quickly, within a week I could notice it was really helping and I was so excited about that.. just to feel "healthier" something I wasnt used to feeling. I was having quite a bit of it, as a meal replacement thing as recommend by my dr as I was struggling to make meals (so having it instead of 2-3 meals). The one I used has been used in hospitals as a complete meal replacement. Iso whey Complete (by PhamaFoods I think it was)
Good to know! I just tried my first dose this morning. Two scoops (what it said on the bag) into a cup of coffee. It sure was a great way to ruin a cup of coffee! It definitely is not bad tasting, but I really like my coffee! I will have to try other ways, but coffee works if need be. So hopefully next Friday I will know if the whey is helping. Then I will try the ribose.
 

taniaaust1

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Good to know! I just tried my first dose this morning. Two scoops (what it said on the bag) into a cup of coffee. It sure was a great way to ruin a cup of coffee! It definitely is not bad tasting, but I really like my coffee! I will have to try other ways, but coffee works if need be. So hopefully next Friday I will know if the whey is helping. Then I will try the ribose.
You could stop it working by putting it into a hot cup of coffee. I suggest not to heat it

"However, what is the difference between undenatured and denatured whey protein?

Undenatured whey maintains all of its amino acids as it i
s cold processed, rather than killing off helpful nutrients and organisms. The protein keeps bio-active as it is processed more sensitively and cooler.

While denatured whey protein means that the whey is processed at very high temperature. "
 

Strawberry

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You could stop it working by putting it into a hot cup of coffee. I suggest not to heat it
Thank you! I did think of that while heating the hot water, and didn't use it. It was cold coffee. But I have decided I prefer my coffee untouched. I drink the whey separate.

I didn't remember to take it last night and this morning. Not sure if that will slow down any benefits?
 
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I found creatine was by far the best for improving stamina and D ribose. Creatine converts ADP to ATP and needs a lot from your methylation cycle which may or may not be working properly. You can load it up for the first week at 20g per day and then drop down to 5 g scoop in water per day after the first week. It's one of my cheapest supplements. I take 30 g of d ribose a day and that is one of my most expensive.
 

Alvin2

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I found creatine was by far the best for improving stamina and D ribose. Creatine converts ADP to ATP and needs a lot from your methylation cycle which may or may not be working properly. You can load it up for the first week at 20g per day and then drop down to 5 g scoop in water per day after the first week. It's one of my cheapest supplements. I take 30 g of d ribose a day and that is one of my most expensive.
30G a day, very impressive. Must be cheaper where you live, that would cost me 4-$5/day
 
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My husband has good results with liposomal glutathione. It allows him to do more than usual without crashing or getting PEM. He tried a really good quality non-denatured whey (which should be used to produce glutathione), and it seemed like it was helping a bit, but then seemed to stop and now it does nothing at all. The glutathione still works well.

He's also currently taking a probiotic that produces and recycle glutathione. Perhaps you'd be interested in it? http://forums.phoenixrising.me/inde...ione-improves-heart-health.52393/#post-868198

Also, not sure this is up your alley, but he is able to increase his activity by taking ketones. Here is his post about it:
http://forums.phoenixrising.me/inde...-tolerance-and-reduced-pem.52639/#post-880787
 
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Even small amounts made me swell up pretty badly :(
ive been wondering why creatine wasn't mentioned more here on the forum. Perhaps I'm lucky? I've recently been supplementing methionine (as SAMe). As I understand it, this is what the body needs to create its own creatine and may be low due to poor methylation. Have you tried SAMe?