• 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.

BCAAs reducing PEM

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
I'm not nearly as reactive as you, though a lot of things used to make me detox, but don't any more. But I don't think it's the same thing as you are dealing with.

There are many people on this board who do react to almost everything and are very limited in what they an eat, etc. You may be dealing with something like MCAS - I'm not sure but I think that's the condition which is related to so many food and supplement intolerances. You may know about this already but it's something I know nothing about. I'm going to tag @Gingergrrl here because she knows a lot about it, and has dealt with MCAS (among many other things! :eek:)

@Mary
I know a little about mast cell stuff, just enough to pray that that's not what this is. More info from a reliable source with experience in this, like @Gingergrrl, would be helpful and would save a truckload of time searching out a trust-able Google source. Thank you so much!!!

As always, you totally rock :thumbsup: :trophy:!!
 

wigglethemouse

Senior Member
Messages
776
I know a little about mast cell stuff, just enough to pray that that's not what this is. More info from a reliable source with experience in this, like @Gingergrrl, would be helpful and would save a truckload of time searching out a trust-able Google source. Thank you so much!!!

@YippeeKi YOW !!
You can read "Never bet against Occam" by Dr Afrin for lots of info on MCAS. Dr. Afrin is the one that pioneered the MCAS treatment field.

Doctors could be referred to this paper, also by Dr. Afrin, where Fig 5 and the text following it details the blood and Urine testing along with special handling instructions.
https://www.wjgnet.com/2218-6204/full/v3/i1/1.htm
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
There are 3 three other ingredients listed under "other ingredients".

My guess is they're mostly to help make it easier to mix in liquids. 1,040 mg of other ingredients per 3 gm scoop is a lot though.

@Mary, @ljimbo423
I agree .... that's a lot of silicon dioxide, calcium silicate, and lecithin from mystery source (soy? sunflower? old motor oil?) ... for bulk or even capsuled stuff, I find that NutraBio is a reliably excellent source, with 3rd party verification and openness about sourcing, additives, etc.

All of their bulk powders are flavored, probably because the taste of the BCAAs can be daunting from what I gather, but the source of the flavorings are clearly stated on their labels, and, at least for the lemonade one, totally benign. None of that irritating and misleading hiding behind the vague "natural flavors" flag, which can mean absolutely anything: a "natural" form of vanilla comes from the anal glands of beavers, go figure .... "natural" just means carbon-based.

The bulk would be the most cost-effective form, but I know from your posts that you prefer capsules. Their capsules aren't as competitively priced as Optimum's product, but just in case you (or anyone visiting this thread who's as reactive as I am) decide you want to try something else, here are two links (both to Amazon, but you can order directly from NutraBio, not sure what the price break on that would be) .... the caps would provide 31.5 days based on your dosage.

CAPS: https://www.nutrabio.com/category/bcaa2500/, also available on Amazon same price, I think, but free shiping with Prime

BULK: https://www.nutrabio.com/category/BCAA5000/, also available on Amazon, ditto above

Stay good
:hug:

PS ..... Oops. I just noticed that the bulk (really missing those brain cells), uses the dread "natural flavors" and if you add up everything under flavorings, there's 1970mgs ... I'd have to contact NutraBio to see what the actual milligram-age of BCAAs is. But my guess is they'll be open in their response, if not quite as forthcoming in their labeling as they are in their other products. Everything is caveat emptor. So tiresome .
 
Last edited:

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
@YippeeKi YOW !!
You can read "Never bet against Occam" by Dr Afrin for lots of info on MCAS. Dr. Afrin is the one that pioneered the MCAS treatment field.

Doctors could be referred to this paper, also by Dr. Afrin, where Fig 5 and the text following it details the blood and Urine testing along with special handling instructions.
https://www.wjgnet.com/2218-6204/full/v3/i1/1.htm

@wigglethemouse
Thank you, very thoughty of you !! Will wait til a little more brain-cell activity wanders back, but will def look into both options, tho I have to admit that anything that requires testing by a doctor right now makes me quake :cautious:. Gulp.
:thumbsup:
 

Gingergrrl

Senior Member
Messages
16,171
I'm going to tag @Gingergrrl here because she knows a lot about it, and has dealt with MCAS (among many other things! :eek:)

@Mary I apologize that I was not able to read this whole thread (just your tag) and probably will not be back on the computer until tomorrow. Was there something specifics about MCAS that you were referring to? I know nothing about BCAA's (from the thread title). I'll check this again tomorrow and hoping I can help.
 

Mary

Moderator Resource
Messages
17,377
Location
Southern California
@Mary I apologize that I was not able to read this whole thread (just your tag) and probably will not be back on the computer until tomorrow. Was there something specifics about MCAS that you were referring to? I know nothing about BCAA's (from the thread title). I'll check this again tomorrow and hoping I can help.
Hi @Gingergrrl - no need to read this whole thread! :sluggish: I should have been clearer. All I really was trying to do was to give @YippeeKi YOW !! your name as a good resource for information on MCAS. She may be dealing with it, and I know nothing about it. If you do connect, discussion about MCAS should probably go in a different thread (or conversation), which I know you know. Thanks! :hug:
 

sb4

Senior Member
Messages
1,659
Location
United Kingdom
Has anyone considered taking tyrosine on top of the BCAAs? I was reading another forum and people said they got tired after BCAAs, I have been more tired recently although can't say for sure it's the BCAAs I take in the morning.

The reason being is that whilst BCAAs compete with tryptophan they also compete with tyrosine/phenyalanine and so you could be depleting yourself of dopamine. I think this would be a bad idea, particularly in the morning.
 

Moof

Senior Member
Messages
778
Location
UK
I was reading another forum and people said they got tired after BCAAs, I have been more tired recently although can't say for sure it's the BCAAs I take in the morning.

If you find that they make your tired, and you tend to wake during the night to visit the facilities, might that be a good time to take a dose? I take at least half of my BCAAs during nighttime perambulations, as I'm a bit of a grazer during the day and they do seem to work best on an empty stomach. Tbh, I don't think they make me feel tired anyway, I just do it for the, erm, convenience.

Interesting what you say about phenylalanine, though. I've always drunk a lot of diet cola, as it makes me feel better in a way I can't easily put my finger on (ordinary cola doesn't have the same effect). Recently, I've wondered whether it's to do with the phenylalanine content from the aspartame – I don't really know, of course, but it's a thought.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
Another thing that was brought up which I found interesting was that the effect on the brain was mild compared to the effect on the gut which contains 90% of the serotonin. @ljimbo423

I assume a similar mechanism will apply to the gut where the ratios could deplete serotonin.

I'm not sure what your tag for me is in reference to.:confused::)
 

Mary

Moderator Resource
Messages
17,377
Location
Southern California
Has anyone considered taking tyrosine on top of the BCAAs? I was reading another forum and people said they got tired after BCAAs, I have been more tired recently although can't say for sure it's the BCAAs I take in the morning.

The reason being is that whilst BCAAs compete with tryptophan they also compete with tyrosine/phenyalanine and so you could be depleting yourself of dopamine. I think this would be a bad idea, particularly in the morning.
This is new to me, I didn't realize the BCAAs could be depleting dopamine. Have you tried adding in tyrosine? I haven't felt more tired in the morning since taking BCAAs but I think I will try adding some tyrosine just to see what happens, another lab experiment! :cool:
 

sb4

Senior Member
Messages
1,659
Location
United Kingdom
@ljimbo423 I thought it was you that was always going on about the gut. Maybe it's someone else though. Either way I was hoping someone who know a lot about the gut would chime in about BCAAs effect on serotonin levels in the gut.

@Mary I haven't though I might do in the future though I am busy now messing around with MCT oils.

@Moof Perhaps me stating they make me tired was premature. I have been getting really sleepy lately and have narrowed it down to probably BCAA or Glycine. I trialed no glycine today and I am not as tired so I think it could be that.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
@ljimbo423 I thought it was you that was always going on about the gut. Maybe it's someone else though. Either way I was hoping someone who know a lot about the gut would chime in about BCAAs effect on serotonin levels in the gut.

Yes, that would be me, always talking about the gut.:) I haven't looked into how BCAA's effect serotonin levels in the gut though.

You have most likely tried digestive enzymes. I have been taking them for years. A couple of weeks ago I switched to a much higher strength one and it's like night and day, how much my digestion has improved.

Have extra strength digestive enzymes ever helped your gastroparesis or other gut symptoms?

MCT have ingredients that are antibacterial and could cause die-off symptoms from killing bacteria in the gut. Something you might want to look out for maybe.
 

Mary

Moderator Resource
Messages
17,377
Location
Southern California
I trialed no glycine today and I am not as tired so I think it could be that.
Glycine caused a very strong detox reaction for me when I first took it. I felt like I had been hit by a truck. I later learned it is used in Phase II liver detoxification. I ended up using a very small dose at first and gradually increased over a few months until I finally stopped reacting badly to it.
 

Moof

Senior Member
Messages
778
Location
UK
Woke up in the middle of the night, remembering that I meant to mention this yesterday... :rolleyes:

Our local GP cautioned a friend with ME against using BCAAs, as she's at some risk of developing type 2 diabetes due to weight gained during an 18-month crash. He said that people who develop metabolic syndrome often have higher blood levels of BCAAs even without taking supplements; it isn't certain that this has a role in increasing insulin resistance, but as diabetes is a dangerous disease, it's best to avoid as many of the risks as you can.

I did ask the GP at my next appt about taking them myself – he seemed happy enough, as my weight and blood sugar are normal. He just advised me to keep it in moderation, and reminded me that they can deplete B vitamins.

I haven't read any research on this issue myself, but thought it was worth passing on.
 

Mary

Moderator Resource
Messages
17,377
Location
Southern California
Hi @Moof - @Learner1 cautioned against the same issue re BCAAs and blood sugar. See https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3156598/#!po=55.9829
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4511294/

From what I can tell, the problem with BCAAs raising blood sugar occurs mainly in people who are overweight. It's been several years since I've had my BCAA levels checked (my leucine was quite low in 2010) so I probably should get them rechecked though I don't want to, as they are keeping my PEM recovery time cut in half from before. Anyways anyone who wanted to take BCAAs could just get their levels checked beforehand if they wished.

I'm wondering if persons with ME/CFS might tend to have low BCAA levels, regardless of weight? Because our bodies are so screwed up

I'm surprised your local GP is even knowledgeable about this issue! I've only had one doctor who knew anything about nutrition, or who even cared (he unfortunately died a few years ago). All the other doctors look at my supplement list and go, oh my, you're taking so much, without really looking at what I'm taking or why.
 

Moof

Senior Member
Messages
778
Location
UK
@Mary, he's only that knowledgeable about the latest in diabetes research because he's a community specialist in it...he knows zilch about ME, despite having me and my mate as patients for 27 and 19 years respectively!!

My friend's a former nurse and very conscious of the risk of T2D since she became overweight, which is why she asked the doctor before taking anything. I wondered if supplementing with them might actually help her lose the weight, as she'd hopefully be able to get out a bit more – I suggested she could monitor her blood sugars for a month, and then do so again on a trial of BCAAs to see if there was any difference. She's seen how much they help me, and is thinking about it.

I either missed @Learner1's post, or forgot I'd read it...sorry to repeat stuff. :rolleyes: