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

[Aroa]

Hi @deleder2k ,

How are you doing with ISO 100 ? I am thinking of trying it ....

Thanks

 

[deleder2k]

Not sure if it made any difference, but I didn't exclude glucose while using it. I ate whatever i normally do... that include my essential can of coke every day.

I don't know whether the researchers at Haukeland think that one should avoid glucose or not while trying to get a lot of nutrition from non-glucose sources. If that made any sense. The body has problem with using glucose as fuel, but does that mean we should not eat it at all? Or is it okay to eat as long as we get enough og energy from protein etc.?? I guess nobody really knows.

 

[Sasha]

I think I'm ready for this. Guess I will need to a few days without my much needed daily can of coke. Is Coke Zero, alright @Sasha?

I'm sure it's packed with health.

 

[deleder2k]

Haha. Aspartame is the most studied sweetener on earth. I trust Coke zero to be just fine. My body needs it

 

[Tunguska]

Was there anything in Fluge & Magella about liver glycogen? You can easily justify a can of regular coke in the morning as means to top it up (Coke Zero not so much).

I don't believe cutting carbs is the way to go (in general or beyond a point), but could you just ask them their opinion?

 

[Aroa]

Thank you so much @deleder2k !!!!

I am not having many carbs in my diet, so adding Iso 100 wouldn´t mean a change in my diet. Just hoping if I could get a bit more energy and if I am able to tolerate it

 

[deleder2k]

I am afraid that getting in touch with Fluge and Mella is somewhat difficult. I think they work 24/7, and I imagine that their e-mail is full all the time :/

 

[Tunguska]

Yeah... that was almost rhetorical. Tell you the truth I didn't believe they'd tell you to cut carbs out anyway .

You weren't completely off the mark with the can of coke thing... I largely switched to sucrose sources (that have potassium and can tolerate, small-moderate doses) in the last year or two, over starch. Reduce the raw glucose load a bit and helps liver regulate the glucose level. You lose the insulin power of starch (wanted in some respects - this gets overlooked too - and other things - so it's not win-win) but overall this works out better being sedentary and sensitive, for me. It can be seen as middle ground between starch-heavy and low-carb.

 

[Murph]

Just wanted to revive this thread with a spot of extra anecdote. Whey has been helping me subtly, and I've just collected some more evidence that lifting my intake may lift its impact.

I just went on an international holiday, which is something I do each year. Normally I lie in bed and sit in cafes rather a lot while my beloved gets out and about somewhat more than me. This year I got a big tub of whey delivered to our hotel. I started dramatically increasing my whey intake and lo and behold, I was able to be out and about a lot more, slept less, and I notched up over 10,000 steps for 6 days in a row at one point, a level of activity I haven't achieved in some years.

I was eating two to four 31g scoops of the whey powder per day. At one point I went too hard and fell into what felt like the start of a deep crash, but mysteriously was out of it just a few hours later.

Now, this is just anecdote, and these pages are full of people who've misunderstood what is making them better and worse. In order that you can take the above attribution of cause and effect with the appropriate size grain of salt here's a list of other things I did differently

• Different food: Japanese food is much lower in fibre, higher rice and fish than my usual diet. (Also I ate more chocolate and peanuts than usual (higher in lipids?).)
• Extra beta blockers: I ramped my dose up to 50% more than the doc recommended (30mg per day)
• Not being in my house: possible mould avoidance.
• Extra paracetamol. I have a theory that taking panadol before doing activity limits inflammation and reduces after effects. I applied this theory diligently while I was away and tried to take paracetamol daily.
• Afternoon naps each day

Still, all of these things are ones I've tried before, and none of them have ever worked super well before, (and none are suggested so strongly by recent research!)

Anyway, I hope I don't become one of those guys on forums who insists on some dumb cure that worked for them, and annoys everyone else It will be interesting to see the effect of continuing increased whey intake now I'm back in real life.

 

[Aroa]

Wow @Murph !!!

That´s good news. I am glad you could sort of enjoy the holidays.

Whey is something on my waiting list. I know that we are all different .... but thank you for sharing your experience !!!

 

[Hugo]

Since I have a huge problem with dairys I dont think whey is the road forward for me. But a combination of rice and yellow pea have a similair profile. Right now im taking pea protein and it does help me somewhat.. the combination would be the best since they complement each other well.

 

[PatJ]

Since I have a huge problem with dairys I dont think whey is the road forward for me. But a combination of rice and yellow pea have a similair profile.

Sunwarrior makes three excellent vegan protein powder mixes that have BCAAs and don't contain any extra additives. The simplest is made from fermented brown rice.

 

[Jenny TipsforME]

@Murph it will be interesting to hear how you get on back home. I had an amazing holiday in Japan in 2007. I was mild then, but even still, I coped amazingly well. It was my most hectic holiday with ME and I don't remember having to pay afterwards.

 

[Tunguska]

Just wanted to revive this thread with a spot of extra anecdote. Whey has been helping me subtly, and I've just collected some more evidence that lifting my intake may lift its impact.

I just went on an international holiday, which is something I do each year. Normally I lie in bed and sit in cafes rather a lot while my beloved gets out and about somewhat more than me. This year I got a big tub of whey delivered to our hotel. I started dramatically increasing my whey intake and lo and behold, I was able to be out and about a lot more, slept less, and I notched up over 10,000 steps for 6 days in a row at one point, a level of activity I haven't achieved in some years.

I was eating two to four 31g scoops of the whey powder per day. At one point I went too hard and fell into what felt like the start of a deep crash, but mysteriously was out of it just a few hours later.

Now, this is just anecdote, and these pages are full of people who've misunderstood what is making them better and worse. In order that you can take the above attribution of cause and effect with the appropriate size grain of salt here's a list of other things I did differently

• Different food: Japanese food is much lower in fibre, higher rice and fish than my usual diet. (Also I ate more chocolate and peanuts than usual (higher in lipids?).)
• Extra beta blockers: I ramped my dose up to 50% more than the doc recommended (30mg per day)
• Not being in my house: possible mould avoidance.
• Extra paracetamol. I have a theory that taking panadol before doing activity limits inflammation and reduces after effects. I applied this theory diligently while I was away and tried to take paracetamol daily.
• Afternoon naps each day

Still, all of these things are ones I've tried before, and none of them have ever worked super well before, (and none are suggested so strongly by recent research!)

Anyway, I hope I don't become one of those guys on forums who insists on some dumb cure that worked for them, and annoys everyone else It will be interesting to see the effect of continuing increased whey intake now I'm back in real life.

Well, you say you've tried it before, but the fish can be a big short-term confounder. I got gigantic doses of omega-3s from salmon without realizing (bad math), and it peters out, but it has more anti-inflammatory activity than paracetamol. I kind of doubt paracetamol has very significant anti-inflammatory effects, rather it's a liver toxin and most likely the whey increases glutathione and helps your body deal with it. Other fish like sardines are super high in purines and increase uric acid and I think that affected me.

I'm still working on this part on myself, but large change in fibre content makes a difference on my body. I've been doing a zero-fiber diet supplemented with dates as the only fiber for about a month and it's a bit early to comment but so far it's stabilized my gut dramatically and my body feels relieved (I never really ate any dates my entire life). Of course that's with tons of whey every day too.

 

[Murph]

the fish can be a big short-term confounder. .

I am actually able to compare that holiday to Japan with a similar holiday a few years ago and confirm that despite similar salmon indulging, I did better this time!

@Murph it will be interesting to hear how you get on back home. I had an amazing holiday in Japan in 2007. I was mild then, but even still, I coped amazingly well. It was my most hectic holiday with ME and I don't remember having to pay afterwards.

I've been more mixed since getting home, I must admit. I've had a couple of crashes. That may be because I'm experimenting with removing some meds I was taking while I was away (or something to do with this damn house). That said, I'm still in very good condition and far stronger than my regular baseline....

 

[Tunguska]

Yeah, you would've noticed the first time.

I almost forgot this, you mentioned chocolate, and there was this study on dark chocolate (was there more than one?): http://forums.phoenixrising.me/index.php?threads/dark-chocolate-and-cfs-study.19283/
The explanation is bunk but there could be a real effect, it has a number of compounds.

I also forgot some species of fish have high levels of phospholipids that might contribute to mTor or affect the brain. I ate herring species that had supplement levels of phosphatidylserine. Whatever it is was in it was so strong I couldn't eat it at supper because it kept me awake.

 

[PatJ]

ate more chocolate and peanuts than usual

Tunguska's mention of chocolate helped me to remember that chocolate is high in iron and magnesium, and peanuts are high in magnesium as well. PWME are generally low in magnesium, so maybe the extra magnesium (and iron?) was beneficial.

Or maybe the caffeine and theobromine in the chocolate was giving your adrenals a kick and producing more energy. I used chocolate in this way for months before discovering the negative effect it had on my adrenals.

 

[Jenny TipsforME]

Have you seen the whey and chocolate studies on http://www.mendus.org/chronic-fatigue-syndrome ? Says CFS but also ME (and you get your personal results, it is essentially Quantified Self n=1 but joined together).

 

[jpcv]

Just wanted to revive this thread with a spot of extra anecdote. Whey has been helping me subtly, and I've just collected some more evidence that lifting my intake may lift its impact.

I just went on an international holiday, which is something I do each year. Normally I lie in bed and sit in cafes rather a lot while my beloved gets out and about somewhat more than me. This year I got a big tub of whey delivered to our hotel. I started dramatically increasing my whey intake and lo and behold, I was able to be out and about a lot more, slept less, and I notched up over 10,000 steps for 6 days in a row at one point, a level of activity I haven't achieved in some years.

I was eating two to four 31g scoops of the whey powder per day. At one point I went too hard and fell into what felt like the start of a deep crash, but mysteriously was out of it just a few hours later.

Now, this is just anecdote, and these pages are full of people who've misunderstood what is making them better and worse. In order that you can take the above attribution of cause and effect with the appropriate size grain of salt here's a list of other things I did differently

• Different food: Japanese food is much lower in fibre, higher rice and fish than my usual diet. (Also I ate more chocolate and peanuts than usual (higher in lipids?).)
• Extra beta blockers: I ramped my dose up to 50% more than the doc recommended (30mg per day)
• Not being in my house: possible mould avoidance.
• Extra paracetamol. I have a theory that taking panadol before doing activity limits inflammation and reduces after effects. I applied this theory diligently while I was away and tried to take paracetamol daily.
• Afternoon naps each day

Still, all of these things are ones I've tried before, and none of them have ever worked super well before, (and none are suggested so strongly by recent research!)

Anyway, I hope I don't become one of those guys on forums who insists on some dumb cure that worked for them, and annoys everyone else It will be interesting to see the effect of continuing increased whey intake now I'm back in real life.

I reckon that the daily snaps are very important; last year I traveled with my kid and I was taking naps every afternoon, I felt much better and capable of doing lots of stuff.

 

[Murph]

An update:

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.

I've had several times recently where I've pushed myself way too hard, immediately crashed, and as an attempt at a response, taken a big dose of whey. (one day I had 200g) . These crashes have all ended up being fleeting. Where I used to know that the harder I pushed myself the longer I'd be exhausted, now I find I recover in about the same time whether I push myself a little or a lot, so long as I tip a whole lot of whey into my body.

2. I take my whey with d-ribose, so I can't separate out the effect of that. But I'd be surprised if d-ribose was the factor, as I rarely take more than a teaspoon of ribose, and I've taken it before.

I'm also continuing to take a range of other supplements I was taking before: beta blockers, magnesium, glutathione, probiotics, vitamin D. Before, I didn't seem to notice if I stopped taking these. Now If I drop these supps I feel worse. Might this be an indication that I am 'refiling the tank' as Naviaux describes? I.e. the sepsis protocol of fixing everything at once?

3. The experience of the treatment is reshaping my whole understanding of CFS towards a belief that crashes are caused by a shortage of a usable source of energy in the bloodstream.

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.

5. nb. A couple of people on reddit are also getting some benefit which is very pleasing: https://www.reddit.com/r/cfs/comments/6khlum/that_iso100_whey_recommendation_has_really_helped/. One hesitates to err on the side of being evangelical about a silly-sounding treatment but in this case it seems to have been beneficial for a couple of people at least.