BCAAs reducing PEM

[Mary]

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

No, you didn't repeat anything! Actually it's very good information, much as I didn't want to hear it. She mentioned this in a PM, which of course you wouldn't have seen, so I just wanted to give her credit. And, I think repeating information is a good thing to do as it is impossible to keep up with everything the first time around. So please, repeat away!

 

[Mary]

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.

That's an idea, might be worth trying. She could also get her BCAA levels checked before starting them. I truly wonder if people with ME/CFS might just tend to be deficient in BCAAs. My leucine was quite low, and I was told (or read, can't remember which) that this was unusual, most people are not deficient in BCAAs, and I've eaten a lot of protein for a long time. So there's no dietary reason my BCAAs should have been low. But I'm thinking with ME/CFS there very well may be a metabolic reason for BCAAs to be low, and they do help with excess tryptophan.

 

[Moof]

She could also get her BCAA levels checked before starting them.

To be honest the NHS doesn't tend to do that kind of test, you'd have to pay privately. She's had to retire, and like me relies on out-of-work benefits until she draws her pension, so we don't have a huge amount of spare cash. The NHS will monitor her for risks such as diabetes, so that programme, plus cheap things like self-monitoring of blood glucose levels before and after starting BCAAs, would probably be the best way to skin this particular cat!

I truly wonder if people with ME/CFS might just tend to be deficient in BCAAs.

The research suggesting that we rely on amino acids as a substrate for energy is the reason I started taking them, and I assume that's why they help. There's a theory that they suppress central fatigue by blocking uptake of serotonin in the brain, but the difference they make to PEM strongly suggests they do more than that. If the work that came out of Norway and elsewhere about women with ME having unexpectedly low levels of amino acids is correct, then they provide extra fuel for us; we may have less PEM because we're not going so far into 'fuel overdraft' as we would without them. That's how I made sense of it, anyway!

 

[ljimbo423]

I truly wonder if people with ME/CFS might just tend to be deficient in BCAAs. My leucine was quite low, and I was told (or read, can't remember which) that this was unusual, most people are not deficient in BCAAs, and I've eaten a lot of protein for a long time. So there's no dietary reason my BCAAs should have been low. But I'm thinking with ME/CFS there very well may be a metabolic reason for BCAAs to be low, and they do help with excess tryptophan.

This is from the Fluge and Mella paper on Pyruvate dehydrogenase inhibition in ME/CFS, causing mitochondrial dysfunction and low ATP (energy).

Analysis in 200 ME/CFS patients and 102 healthy individuals showed a specific reduction of amino acids that fuel oxidative metabolism via the TCA cycle, mainly in female ME/CFS patients. Serum 3-methylhistidine, a marker of endogenous protein catabolism, was significantly increased in male patients.

Catagory II is in the red box in the diagram. The amino acids in that box were found to be reduced in ME/CFS patients.

Category II amino acids enter the oxidation pathway as acetyl-CoA, which directly and independently of PDH fuels the TCA cycle for degradation to CO2.

These are isoleucine (Ile), leucine (Leu), lysine (Lys), phenylalanine (Phe), tryptophan (Trp), and tyrosine (Tyr).

Link to paper

 

[Moof]

Thanks, @ljimbo423, that's the one I was thinking of!

 

[ljimbo423]

Thanks, @ljimbo423, that's the one I was thinking of!

I thought it might be!

 

[Mary]

Thanks @ljimbo423! my eyes usually glaze over when I see scientific diagrams, my brain just sort of shuts down, but it's very interesting to see how isoleucine and leucine (and other aminos) were found to be reduced in persons with ME/CFS.

 

[Moof]

Coincidentally, @Ben H has posted a link to the transcript of Dr Fluge's presentation at the OMF symposium this evening. Dr F mentioned the research on amino acids that we've been discussing, but there's also some brief info about fatty acid levels (I've added paragraph breaks, which aren't in the transcript):
__________

And then just to give you a small snapshot of the metabolism data we have for fatty acids. I will tell you that a little bit about that. Because if there is an impaired PDH function as I told you about, we would then expect that there is an increased conversion of pyruvate to lactate. If you stress the system and put the patients under strain—and that's what patients are telling us—they seem to have sore muscles and quickly a feeling of lactate in the muscles. [There is] reduced ATP production in this energy deprivation.

And we would expect that in addition to using amino acids from serum, [they would] also use fatty acids which is a major source for TCA oxidation and energy. And therefore we have analyzed a lot of fatty acids among many other metabolites trying to underpin this data. This is just a snapshot as examples from the saturated fatty acids that we have measured in ME/CFS patients and you can see it divided by women and men.

Most of these fatty acids are down regulated, reduced in serum levels, especially the short and medium chain fatty acids in both genders. So we don't have to go into the details. And we looked at the TCA cycle intermediates which are part of the citric acid cycle and these are also reduced. Some of them are equal to healthy [controls] such as citrate. In accordance with that in the model that we are thinking [of], there's a slight increase in pyruvate in the ME/CFS patients that would fit with an obstruction at the PDH level.

__________

It made me wonder whether supplementing with fatty acids – especially short-chain ones such as butyrate, which are produced in a healthy gut by microbes, but are difficult to obtain from food – might also be helpful with energy production?

Although I can eat most vegetables other than potatoes, I can't tolerate the inulin/FOS prebiotics that really help feed the bugs that produce these substances, so a direct supplement would be the only option. I'm already on B12 injections, folate, and BCAAs, so I'm a bit hesitant about adding yet more non-food-based nutrition. I might make a note of it in case I hit a particularly rough patch, though...

 

[Tammy]

When I first had an amino acid test done (2004),I was deficient in 13 out of the 21 that were tested. BCAA's were in the deficient group. I was told I had severe protein deficiency and one of the indicators of this was my extreme low level of urea. I ate plenty of protein at the time. What I suspect is that I was not assimilating it. I had poor digestion back then and I'm sure my HCL production was poor and liver/bile production low as well. Methylation problems not helping as well. Methylation is all about the liver being able to break down nutrients.

 

[ljimbo423]

It made me wonder whether supplementing with fatty acids – especially short-chain ones such as butyrate, which are produced in a healthy gut by microbes, but are difficult to obtain from food – might also be helpful with energy production?

Although I can eat most vegetables other than potatoes, I can't tolerate the inulin/FOS prebiotics that really help feed the bugs that produce these substances, so a direct supplement would be the only option.

I can't tolerate inulin or FOS either. I have a jug of inulin on my refrigerator, just sitting there. I don't have any problem tolerating bob's red mill resistant starch though. Although you might not be able to eat that if you have a problem with potatoes.

Real butter is high in butyrate, about 3-4%. So a serving of butter (1 tbsp) would have about 490 mg butyrate. I eat about 2 Tbsp. a day of butter, which is almost 1,000 mg butyrate.

 

[Moof]

I eat about 2 Tbsp. a day of butter, which is almost 1,000 mg butyrate.

...and, I imagine, considerably cheaper!

I do love butter, but never have the patience to try and spread it on bread. I probably could eat it by the tablespoon, though.

 

[yurybx]

I bought some BCAA in a powdered form and noticed significant improvement in stamina but they caused severe kidney pain so I stopped taking it
I would like to try them again maybe it was the brand

I am wondering why the kidney pain?

My kidneys also start nagging after taking BCAA. I took the drug from Optimum Nutrition in capsules. Why it happens? In addition to the amino acids themselves, there is also magnesium stearate. Can magnesium stearate harm the kidneys? Or do amino acids do this? Does this observation provide useful information about my kidneys?

 

[Moof]

My kidneys also start nagging after taking BCAA.

There is some evidence – albeit not very consistent – that if you have underlying kidney problems, BCAAs can aggravate it. All protein can potentially do this, which is why people receiving treatment for significant kidney disease are advised to lower their protein intake.

BCAAs also dry you out. If you're not taking extra hydration with them, this could be what's behind the discomfort. But if you try them again with additional fluid intake and still feel uncomfortable, it might be best to just listen to your body and cut them out. I'm on a medication that requires regular kidney function tests, and the results haven't changed since I started on BCAAs – if it did, I'd definitely reduce my intake (I don't take more than the recommended dose anyway).

 

[jesse's mom]

I take just one 1000 mg of BCAAs in the morning with no food. It helps with brain fog, and I don't seem to have as much tinnitus at this time. When I was taking 2000 mg I got a headache and lower back pain. I have CKD stage 3 and it does not seem to bother my kidneys at the lower dose. I drink water in the morning. Then breakfast an hour or so later. Low meat diet. Small portions of most everything except vegetables, and some fruit. Thanks for this thread y'all!

 

[andyguitar]

Interesting thread this one. Out of the sufferers I have met personally over the years all who have tried BCAA have reported an improvement. Exactly why they work is pretty difficult to determine. As @Mary says they help reduce excess Tryptophan and I suspect that could be the answer for some. @jesse's mom could try spreading her intake of BCAA over the course of the day if she wanted to up her dose to see if it helped.

 

[jesse's mom]

thanks @andyguitar I am waiting to do my blood work in the first of January to see where I am. Then I will try a before lunch of BCAAs I find it interesting that some people can take them and sleep... They are like two cups of coffee for me. That is good because my body rejected coffee 10 years ago!

I have a new PCP that is a DO MD, she looks at the whole body instead of all the specialists. I am trying this newer type of PCP and right away she was supplement friendly! YAY

 

[Moof]

They are like two cups of coffee for me.

That's interesting. I take my doses during the night, so it's easy to take them on an empty stomach (if I try to do it during the day, I tend to forget to take them until I've eaten). I don't see any immediate release of energy at all; it's more about preventing future crashes by avoiding the build-up of PEM on top of PEM, which you get when you can't avoid exceeding your envelope each day.

In my mind, they work because my body's burning amino acids for fuel – and as they provide more of it, I don't suffer so much from the after-effects of going into fuel deficit. I might be (and probably am) 100% wrong, though!

 

[andyguitar]

Well some interesting and contrasting comments from @Moof and @jesse's mom. Yes amino acids can be burnt as fuel if you are a bit short of it but i doubt it has that much to do with why some get a benefit. It would be worth @jesse's mom mentioning the effect they have on her to the new PCP as it might be that BCAA are reducing an elevated level of Tryptophan. And some of her symptoms might be due to that. I predict good times ahead for her now she will be getting better medical advice.

 

[jesse's mom]

I agree @andyguitar ! Thanks!

 

[Wolfcub]

I can't tolerate inulin or FOS either. I have a jug of inulin on my refrigerator, just sitting there. I don't have any problem tolerating bob's red mill resistant starch though. Although you might not be able to eat that if you have a problem with potatoes.

Real butter is high in butyrate, about 3-4%. So a serving of butter (1 tbsp) would have about 490 mg butyrate. I eat about 2 Tbsp. a day of butter, which is almost 1,000 mg butyrate.

I'm so glad you said that about butter @ljimbo423 I adore butter and eat about the same amount as you each day. I can't handle any other spread. I KNEW my body knew it was good for me.