• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Update on BCAAs, glutamine and PEM

Hip

Senior Member
Messages
17,873
@Hip - thanks for your detailed (as always!) reply. to be honest, it's hard for me to absorb all the chemistry. I just go with major concepts or points.

After reading what you posted on central fatigue (which I have to admit I had not heard of before), and how the tryptophan / leucine ratio or tryptophan / BCAA ratio can affect serotonin, this made me curious about a possible connection between the serotonergic system and the fatigue in ME/CFS.

So what you have posted might have wider scope than just the BCAA treatment for PEM (very useful though that is): it points to examining the possibility of serotonergic mechanisms of fatigue in ME/CFS.



I did also try to look up what you quoted on branch chain amino acids down-regulate the conversion of ATP to cyclic AMP, but could not find much info on this.



I have been trying BCAA recently as a result of your threads on the PEM-busting effect of BCAA, and I think BCAA may have reduced the PEM I get the day after socializing, but I will have to try this a few times again to confirm.

By the way, do you find that BCAA helps reduce you ordinary daily ME/CFS fatigue, as well as the worsened fatigue you get through PEM?
 

Mary

Moderator Resource
Messages
17,385
Location
Southern California
After reading what you posted on central fatigue (which I have to admit I had not heard of before), and how the tryptophan / leucine ratio or tryptophan / BCAA ratio can affect serotonin, this made me curious about a possible connection between the serotonergic system and the fatigue in ME/CFS.

So what you have posted might have wider scope than just the BCAA treatment for PEM (very useful though that is): it points to examining the possibility of serotonergic mechanisms of fatigue in ME/CFS.



I did also try to look up what you quoted on branch chain amino acids down-regulate the conversion of ATP to cyclic AMP, but could not find much info on this.



I have been trying BCAA recently as a result of your threads on the PEM-busting effect of BCAA, and I think BCAA may have reduced the PEM I get the day after socializing, but I will have to try this a few times again to confirm.

By the way, do you find that BCAA helps reduce you ordinary daily ME/CFS fatigue, as well as the worsened fatigue you get through PEM?

I'm sure you're right that it would be probably be very useful to examine serotonergic mechanisms of fatigue in ME/CFS. The BCAAs seem to provide a remedy (at least partially), but the underlying cause or mechanism remains undetermined, unless that one little sentence about a metabolic pathway getting activated when you first get sick and then being unable to unactivate somehow holds the key. It sounded actually like a simple explanation for a bewildering illness.

This is the source for the statement about BCAAs downregulating the conversion of ATP to cyclic AMP (this whole idea reminded me of Sarah Myhill): Cheney P. Chronic fatigue syndrome as a metabolic disorder. The CFIDS Chronicle. 1993. I know, it's not much of a source, not a peer-reviewed publication. But I just thought, what do I have to lose in trying the BCAAs and it was such a fascinating concept to me. This was from 1993. I don't think Cheney currently recommends BCAAs.

I'm not sure what you mean when you say you will have to "try this a few times again to confirm". Are you taking BCAAs daily or just when you know you will be socializing? I have been taking the BCAAs daily since November 2014, and and glutamine for some 3 to 4 months. The glutamine initially made me detox but I seem to have gotten over that. So I would try taking them daily for a sustained period of time to give them a real test.

Yes, the BCAAs do help my energy in general. I think the glutamine does as well. Some weeks ago I started taking inosine and that boosted my energy in a very nice way, and then I switched to DMG, which also boosts my energy. So in general my energy and stamina are markedly better than a year ago, I think thanks to the BCAAs, glutamine and now DMG.
 

Mary

Moderator Resource
Messages
17,385
Location
Southern California
@Mary what is your diet?

Protein and vegies and a little fruit mainly, also lentil soup and chili. e.g., I might have fish or chicken and some kind of veggie for dinner. I avoid "white" foods (white flour, rice, pasta, potatoes, etc.) I ate very little dairy for years, just a little cheese, and just recently started eating yogurt, which I seem to do fine with now. I eat a little wheat (1 or 2 pieces of bread a week), and I do eat rye crackers. In general I eat a lot of greens (spinach, chard). I eat almost no sugar at all. I make a protein bar which is really good which has almonds, peanut butter, flaxseed, coconut, whey protein powder, coconut oil, and dark chocolate (with a tiny bit of sugar!) on top.
 

Hip

Senior Member
Messages
17,873
I'm not sure what you mean when you say you will have to "try this a few times again to confirm". Are you taking BCAAs daily or just when you know you will be socializing?

I have only recently started experimenting with BCAAs.

I tried BCAAs for a few days in a row (at a dose of 25 grams per day), but did not notice any improvements in ME/CFS symptoms. But I will try BCAAs again for a longer period soon.

My other experiment was taking BCAAs a few hours before going out socializing for 3 or 4 hours in the evening (which normally gives me PEM for the next day or two). After one social occasion BCAAs did seem to mitigate my PEM, so that is encouraging, but I will have to try it again to confirm these results. Normally I only go out socializing around once a week, on the weekend, otherwise I get too much PEM.

I am also going to try taking leucine just before socializing in the evening, to see if that reduces PEM.
 

Gondwanaland

Senior Member
Messages
5,095
I make a protein bar which is really good which has almonds, peanut butter, flaxseed, coconut, whey protein powder, coconut oil, and dark chocolate (with a tiny bit of sugar!) on top.
Please share the recipe! (not that I can tolerate all that but in the hope I soon do :rolleyes:)
 

Mary

Moderator Resource
Messages
17,385
Location
Southern California
@Hip - I think 25 grams is a pretty high dose. Are you taking them on an empty stomach, which is the best way to do it?

You might try taking them daily, perhaps a smaller dose, just to see if in the long run your PEM lessens. Again, for me it was somewhat gradual. I did have a crash (PEM) that was markedly shorter several days after starting the BCAAs, but it wasn't until I'd been taking them for probably close to 3 months that I noticed my stamina or activity window increasing - able to do more before crashing. And then I finally began to wonder if PEM was a thing of the past, but discovered not so on Easter.

Well, it's an experiment - taking it daily is what helps me and you'll find what works best for you.
 

Mary

Moderator Resource
Messages
17,385
Location
Southern California
Please share the recipe! (not that I can tolerate all that but in the hope I soon do :rolleyes:)

Here it is - I hope you can enjoy this soon! I eat these quite often for breakfast, they're satisfying and seem to be a good nutritional combo.

Almond Power Bars (Anne’s recipe)

2 cups raw almonds
½ cup flaxseed meal (you can buy flaxseed meal, or just grind up whole
flaxseeds in your coffee grinder) - keep flaxseeds in refrigerator or freezer as they will get rancid otherwise
½ cup unsweetened shredded coconut
2 scoops whey protein powder
½ cup almond butter (I used peanut butter - the kind that just has peanuts and salt)
½ teaspoon salt
½ cup virgin coconut oil
8 drops liquid stevia or 3/4 tsp. powdered stevia (or to taste)
1 Tbsp. vanilla extract
4 oz. unsweetened chocolate, melted and sweetened to taste with stevia or sugar (or use bittersweet or semisweet chocolate)

I found it impossible to sweeten the chocolate with stevia (although it worked fine for the bars themselves) and just use a little sugar in the chocolate.

Place almonds, flax meal, shredded coconut, whey powder, almond butter (or peanut butter) and salt in a food processor. Pulse briefly, 10 or 20 seconds.

In a small saucepan, melt coconut oil over very low heat (coconut oil melts at around 76 degrees, so, depending on the weather, you may not need to melt it on the stove). Remove coconut oil from heat and stir in stevia and vanilla.
Add coconut oil mixture to other ingredients in food processor and pulse until mixture forms a coarse paste.

Press mixture into 8 x 8 glass baking dish (lining it with parchment paper will help remove the bars). (I use an 8 x 13 rectangular pan, it works fine, and line it with freezer paper, shiny side up)

Chill in refrigerator one hour, until mixture hardens.

In a double boiler, melt the chocolate, stirring in stevia or sugar to taste. Spread melted chocolate over the bars; return to refrigerator for 30 minutes, until chocolate hardens. Remove from refrigerator, cut into bars and serve. I store the bars in refrigerator or freezer as coconut oil melts at 76 degrees.
 

SDSue

Southeast
Messages
1,066
Thanks a million, @Mary for your wonderful answers.

Every time I say I'm done trying new supplements, something else comes along that has sound science behind it, and away I go! (again)

Something broke me; therefore I believe something can fix me. Or, more likely, several somethings. Thanks again!
 

Hip

Senior Member
Messages
17,873
@Hip - I think 25 grams is a pretty high dose. Are you taking them on an empty stomach, which is the best way to do it?

Yeah I might try a lower dose next time, say 10 grams. I do take the BCAAs on an empty stomach, for best absorption.
 

Gondwanaland

Senior Member
Messages
5,095
@Mary if you already posted before please direct me to your post about it:

  • could you please specify the amounts you are taking trom each BCAAs?
  • how much glutamine?
  • at what time of the day?
  • + 250mg DMG?
I am seeing my dr in one week and now that I seem to tolerate 1 tsp whey daily w/o ammonia problems (or any other apparent side effect), I want to try your regime and work on personalized doses to my overly sensitive system with my dr.

I can't get DMG here where I live, but vitamin B15 is legal, so I will try that instead.
 

Mary

Moderator Resource
Messages
17,385
Location
Southern California
@Gondwanaland - I'm taking 4 caps of Vitacost Aro brand BCAAs, twice a day on an empty stomach - 4 caps when I first get up and 4 more late morning. Each 4 cap serving has 2000 mg. leucine, 1000 mg. isloleucine and 1000 mg. valine, for a total of 4000 mg. leucine, and 2000 mg. each isoleucine and valine a day.

I'm also taking two 1000 mg. caps of l-glutamine, one with each of the above servings, for a total of 2000 mg. a day.

Aro brand seems to be a pretty good brand and it was one of the cheapest. When I first started the BCAAs, I took MRM brand BCAA+glutamine (which is how I got started on the glutamine). I've also taken Optimum Nutrition brand, and they all seem to be good.

I'm taking 125 mg. DMG. I know a lot of people take more, but I seem to be really sensitive to it and am doing well with this dose.

I know vitamin B15 is related to DMG, although I don't know the chemistry. If for some reason you'd like to try DMG, you could order it from iherb.com - they have really fast shipping and I know they ship overseas (though I don't know the cost) Here's the DMG I take: http://www.iherb.com/Now-Foods-DMG-...os=1&disc=0&lc=en-US&w=dmg&rc=56&sr=null&ic=1

I'm really glad your ammonia situation is improving, at least a little. Keep us posted how you do with all this! :)
 

Gondwanaland

Senior Member
Messages
5,095
@Mary thank you very much for the details!

I can't import right now with the current currency conversion.

I am already on 1g glutamine daily as well, with no ill effects this time.

I think my dr will divide your doses by 20 for me to give it a try :eek::thumbsup:
 

Mary

Moderator Resource
Messages
17,385
Location
Southern California
@Gondwanaland - I forgot to add that I take the DMG on an empty stomach as well with my first dose of BCAAs.

Your doctor sounds very cautious, which can be a good thing (though frustrating too I'm sure!). I know you've had issues I've never had to deal with. I recommended niacin once to someone and they had a terrible time with it. So I've learned we are all different, though much alike too.

FWIW, several years ago a doctor told me to take 2 capsules of BCAAs, either once or twice a day, I forget which. He neglected to mention it should be on an empty stomach nor the dose each capsule should have, and I didn't process at the time that these were amino acids to be taken on an empty stomach. In any event, they did nothing for me and looking back, I think the dose was way too small and I don't think I took them properly either.

Well - good luck and I hope you do well with the BCAAs!
 

Gondwanaland

Senior Member
Messages
5,095
I am sure my dr will be looking forward to titrating it up rather quickly, but we have to be careful as I am highly reactive :nervous:
 

Gondwanaland

Senior Member
Messages
5,095
BTW how long do you wait to eat breakfast?

I already set the alarm clock to ring 1 hour before I get out of bed to take my T4/T3 replacement...
 

Mary

Moderator Resource
Messages
17,385
Location
Southern California
@Gondwanaland - funny you should ask :sluggish:-- I don't think the BCAAs increased my need for electrolytes, I took them for several months with no problem, but I have just discovered that the DMG (which I only started about 2 weeks ago I think) seems to have greatly increased my need for potassium. I've had a couple of different things going on for several weeks, primarily a sinus infection which finally resolved, and then some intestinal thing which took 3 or 4 weeks to straighten out, by which time I was not feeling all that well and getting very discouraged, although at the same time I had more energy from the DMG etc.

But the last week or so my vision was getting blurry and I was getting more tired and achey and was thinking I'm still recovering from that intestinal thing, and then yesterday was very bad energy wise. It felt similar to a crash but different. And I was thinking oh, no, here I am telling everyone to take BCAAs and DMG and I'm going downhill pretty quickly.

And then mid-morning today a light went on - low potassium - this is what happens to me when I'm low in potassium. It's just been quite awhile since I've experienced it but it all makes perfect sense. The DMG is ramping up methylation which increases the need for potassium, etc. I think I'm going to need about double what I was taking before. I've taken more potassium today than usual plus a glass and a half of low-sodium V8 which is very high in potassium and my vision is clearing and energy is starting to come back.

I was actually going to do a post for you about this, to give you a heads up about DMG and potassium. I've been thinking I should have realized sooner what was going on, but I think it was because the low potassium symptoms started when I was still wrestling with the intestinal problem, there was too much going on at once to figure it out. But I am so relieved to have figured it out! :nerd:
 

Gondwanaland

Senior Member
Messages
5,095
fteller.png
:lol:
@Mary it occurred to me today because I doubled my whey dose (from one to TWO! teaspoons) and felt crampy calves... Then I imagined that the BCAA would increase the need for it, but then it is the DMG that does it....