Whey protein powder to address ME/CFS metabolic issues being identified by researchers - which one?

[TreePerson]

Can I ask @Murph What was your level of function before the whey? 10,000 steps is such a lot I am imagining you were fairly mild? Also how long had you been ill? Which brand do you use? Thanks. ☺️

 

[Murph]

Can I ask @Murph What was your level of function before the whey? 10,000 steps is such a lot I am imagining you were fairly mild? Also how long had you been ill? Which brand do you use? Thanks. ☺️

Yes I have always been mild or at worst moderate. Classic PEM with POTS and severe fructan intolerance, but capacity to work from home a few days a week and walk the dog each day, prepare my own meals, etc. Sick for 15 years including two good remissions.

Brands I've used are amix, dymatize and bulk powders.

 

[lemonworld]

I seem to be helped by whey too. I've been taking around 100g (25×4) a day since april, and it seemed like an immediate improvement, that has lasted. Though April is the time of year I've gotten suddenly better in the past too, so I can't be sure if it's the whey.

I was the worst I've been this winter, could hardly walk or talk. Now I can manage short walks or doing light house chores if pacing carefully.

My cognetive symptoms are not better however, so I feel like a zombie walking around unable to think. The cognitive symtpoms have always been the worst for me though. I've been overdoing it too, when finally having a tiny bit of energy, and that's probably making my cognetive symtpoms worse.

Hypoglycemic symptoms are much better. I eat a low carb, high protein diet, and try to do as low histamine as possible.

Digestion is better, no idea if it correlates.

I haven't had an appetite in forever, but when I started the protein powder I began craving it all the time. And it's not because the taste is so good - I just use a plain one in water.

So far it seems like the thing that's made the biggest difference out of everything I've tried, and I can't imagine ever stopping using it.

 

[Thinktank]

I absolutely and wholeheartedly recommend 100% whey isolate from bluebonnet nutrition, i say this after having tried many different brands and formulas.
https://www.iherb.com/pr/Bluebonnet...te-Natural-Original-Flavor-2-2-lbs-992-g/9476

It's an isolate powder from undenatured whey so it contains quite a fair amount of IgG and lactoferrin. Also BCAA.
There's NO sucralose or any fillers in it.
IIngredients: Undenatured whey protein isolate, natural vanilla flavor, non-GMO sunflower lecithin, MCT oil. That's all!

I use this protein powder with 1 tablespoon of MCT oil on days when i know i have to exert myself, i have no or mild PEM afterwards.
Unfortunately i'm intolerant to dairy if eaten frequently so i try to limit the intake, otherwise it would be a staplefood for me!

I'd like to stress out that anyone wanting to try out a protein powder should go for the best quality only. For example, 100% gold nutrition whey really messed me up whilst it's touted as a premium brand. LOOK at the ingredients and the manufacturing process it has undergone, most protein powders contain a lot of bad stuff and huge amounts of sucralose.

 

[Biarritz13]

Peptopro is hydrolyzed at 27%.

Whey isolate is hydrolyzed around 5 to 7%.

I am guessing the first one is gonna give better results if purity is a factor.

 

[Tunguska]

1. I've found the best dose of whey for me is a high dose. I'm often taking as much as 120g a day. I haven't had a major crash for ages and I am seriously pleased with the effect.

I've been notching up more than 10,000 steps a day regularly. I've done some strength exercises and ridden my bike. For the last few weeks each Monday I played a game of futsal and despite feeling very tired at the end, was okay the next day.

Yeah I been doing high protein for years and 90-120g is the sweet spot usually. I take it for granted nowadays. Only difference is now I lean toward the faster absorbing kind.

There was a guy on the forum I think it was @dbkita doing 200g+ protein daily and clearly he was surviving, don't know where we went.

4. The downsides: I seem to have lost my ability to eat a lot of fibrous foods I used to be able to tolerate, and I have put on a fair bit of weight. I seem also to be a bit more sensitive to changes in my blood sugar. One suspicion I have is that the sucralose in the brand I favour is messing with my gut bugs so I am reverting to a brand without sucralose.

Seriously like other guy wrote above, stay away from the brands filled with gums and artificial sweeteners if you're gonna ingest it constantly. It will mess with your gut. The cheapest additive-free product I found was https://shop.iwindirect.com/product.php?productid=16183&cat=0&page=1 when you buy in bulk but it's not top quality, it used to be better. I try to get better brands but buying so much it does burden the wallet.

Whey does spike insulin more than any other protein.

 

[TreePerson]

Hi @lemonworld. Which brand of powder do you use? I am very interested to know which types and brands people use. I have used Pulsin isolate which makes me sweat and I don't know why. And organic whey protein concentrate, which has lower protein but more fats etc and doesn't make me sweat. I haven't got past 30g. I'm completely housebound and mainly bedbound. But reading this I'm encouraged to try a higher dose. I am wondering how people space it out? Do you have it between meals with meals?

 

[lemonworld]

@TreePerson I use an unflavored one by Star Nutrition, called whey 80. I'm not sure if it's avilable in other countries and what the quality is. I take it with every meal.

 

[TreePerson]

Thanks @lemonworld. I will look it up and see if it's available here or if not try something comparable. How much do you take at each meal?

 

[ljimbo423]

Might this be an indication that I am 'refiling the tank' as Naviaux describes? I.e. the sepsis protocol of fixing everything at once?

It seems to me like you could be, given the incredible health benefits of whey protein, with your other supps. Given the high amounts of cystine in undenatured whey protein, which boosts glutathione big time. The high amounts of immunoglobulins, should give your immune system a significant boost.

All the amino acids would certainly help. There is lactoferrin in it too, which both boosts the innate immune system and helps to kill off bad bugs in the gut. Just an all around really good super-food! Congrats on the improvements!!

 

[lemonworld]

Thanks @lemonworld. I will look it up and see if it's available here or if not try something comparable. How much do you take at each meal?

I take 25g with four meals. I have no clue if this is a good amout though.

I hope you will have good look with it!

 

[Murph]

I seem to be helped by whey too. I've been taking around 100g (25×4) a day since april, and it seemed like an immediate improvement, that has lasted. Though April is the time of year I've gotten suddenly better in the past too, so I can't be sure if it's the whey.

I was the worst I've been this winter, could hardly walk or talk. Now I can manage short walks or doing light house chores if pacing carefully.

My cognetive symptoms are not better however, so I feel like a zombie walking around unable to think. The cognitive symtpoms have always been the worst for me though. I've been overdoing it too, when finally having a tiny bit of energy, and that's probably making my cognetive symtpoms worse.

Hypoglycemic symptoms are much better. I eat a low carb, high protein diet, and try to do as low histamine as possible.

Digestion is better, no idea if it correlates.

I haven't had an appetite in forever, but when I started the protein powder I began craving it all the time. And it's not because the taste is so good - I just use a plain one in water.

So far it seems like the thing that's made the biggest difference out of everything I've tried, and I can't imagine ever stopping using it.

That's terrific! happy to hear it!

 

[jpcv]

I´ve taken two brands of Whey but it gives me terrible headaches, anyone has experienced this before? any tips?

 

[Jenny TipsforME]

This is generally very encouraging. I need to remember to have whey more consistently!

@Murph what is the sepsis protocol?

@jpcv no I've not noticed headaches to do with whey

 

[Murph]

This is generally very encouraging. I need to remember to have whey more consistently!

@Murph what is the sepsis protocol?

It's this idea that we're short of almost every nutrient and can help the problem by reintroducing them in the right order. Idea comes from the metabolic researchers.

https://www.healthrising.org/blog/2...hronic-fatigue-syndrome-starvation-australia/

Why is this happening? Armstrong suggested a couple of reasons. He noted that many of the metabolomic anomalies he found in ME/CFS are also found in sepsis and starvation. All show reductions in amino acids and lipids and increased levels of glucose. In both diseases proteins and lipids are used to produce maintain low energy levels while glucose is used for other matters – such as immune cell proliferation in sepsis.

Armstrong speculated that an infection or autoimmune process may have triggered a sepsis-like condition which then lead to a state of chronic starvation. During sepsis immune cells rely entirely upon glycolysis to proliferate wildly. They are so energy hungry during this process that they can deplete the system of essential cofactors perhaps leading to a state of chronic cellular starvation.

In starvation amino acids and fats are preferentially used to feed the TCA or Krebs cycle instead of glucose. Likewise, in anorexia the mitochondria switch to amino acids and lipids to fuel ATP production. The Aussie team believes the inability to use glucose properly may be contributing to a kind of low-level chronic starvation of mitochondria.

This state of low-level starvation is not particularly easy to escape. When the body begins starve it robs the tissues of many of the cofactors (vitamins/minerals) needed to utilize foods. If those cofactors aren’t provided along with the food a problem called refeeding syndrome can result. That’s an intriguing issue given the problems some severely ill patients have with gaining weight.

Armstrong speculated that the treatment protocols similar to those used to safely bring people out of starvation might be able to help in ME/CFS. Those protocols involve providing nutrients in specific stages based on their metabolic state. Bob Naviaux has also endorsed a stepwise approach to solving ME/CFS patients’ metabolomics issues.

 

[Alvin2]

I just came across his thread and tried to read through it but i don't understand why whey protein would theoretically help

 

[Murph]

I just came across his thread and tried to read through it but i don't understand why whey protein would theoretically help

The idea (proposed by Naviaux (edit: proposed by Fluge and Mella)) is that some problem with pyruvate dehydrogenase is fucking up the body's ability to use normal energy, i.e. glucose. It is instead relying on other sources (proteins, fats).

This hypothesis is supported by the fact that Naviaux observed evidence in men that the body is breaking down muscle tissue (potentially to provide amino acids to feed the energy needs.)

So by providing abundant amino acids, the body has access to energy in a form that doesn't depend on pyruvate dehydrogenase working properly.. Hydrolysed whey is providing these amino acids in the easiest-to-absorb form.

(If, and this is my own specualtion, energy deficits cause second-round reactions that also propagate symptoms, whey supplementation could do more than just provide energy in the here and now but also reduce other symptoms of the disease.)

 

[Alvin2]

The idea (proposed by Naviaux) is that some problem with pyruvate dehydrogenase is fucking up the body's ability to use normal energy, i.e. glucose. It is instead relying on other sources (proteins, fats).

This hypothesis is supported by the fact that Naviaux observed evidence in men that the body is breaking down muscle tissue (potentially to provide amino acids to feed the energy needs.)

So by providing abundant amino acids, the body has access to energy in a form that doesn't depend on pyruvate dehydrogenase working properly.. Hydrolysed whey is providing these amino acids in the easiest-to-absorb form.

(If, and this is my own specualtion, energy deficits cause second-round reactions that also propagate symptoms, whey supplementation could do more than just provide energy in the here and now but also reduce other symptoms of the disease.)

So is it all whey protein (or just protein) that may help or are there some specific components in the protein that are the target nutrient?

 

[Murph]

So is it all whey protein (or just protein) that may help or are there some specific components in the protein that are the target nutrient?

The following amino acids (which feed into the krebs cycle downstream of he pyruvate dehydrogenase complex) are hypothesised to be important.

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

... methionine (Met) and valine (Val), which are converted to succinyl-CoA; histidine (His), Gln, Glu (Gln + Glu = Glx), and proline (Pro), which are converted to α-ketoglutarate; and asparagine (Asn) and aspartate (Asp), (Asn + Asp = Asx), which are converted to fumarate or oxaloacetate

source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5161229/

 

[Alvin2]

The following amino acids (which feed into the krebs cycle downstream of he pyruvate dehydrogenase complex) are hypothesised to be important.

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

... methionine (Met) and valine (Val), which are converted to succinyl-CoA; histidine (His), Gln, Glu (Gln + Glu = Glx), and proline (Pro), which are converted to α-ketoglutarate; and asparagine (Asn) and aspartate (Asp), (Asn + Asp = Asx), which are converted to fumarate or oxaloacetate

source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5161229/

Very interesting, thanks
I glanced at it (can't read it, brain overload) but it says female patients and i believe Dr Naviaux found men and women had different deficits so are the aminos involved changed?
Also is the Dymatize ISO 100 mentioned in the first post special for some reason or will any whey protein do the same job?