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

Discussion in 'General Treatment' started by Sasha, Dec 31, 2016.

  1. Sasha

    Sasha Fine, thank you

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    Is it any cheaper for you to buy it from UK Amazon and have it delivered to Norway, @deleder2k? I don't know if you have to bear in mind any customs charges, like you would if you were buying from the US.
     
  2. Daffodil

    Daffodil Senior Member

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    wasnt this a thing in the early days of CFS? i remember being told to take denatured whey....

    or was it undenatured...

    lol sorry
     
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  3. bertiedog

    bertiedog Senior Member

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    I have tried branch chain amino acids and also whey protein but after a few days they make my brain very hyper and give me an inability to sleep properly. Its as if they mess up my neurotransmitters which seem to be quite well balanced on a daily basis without anything else added.

    I wonder if it could be due to my genetics? (I cannot metabolise glutamine properly it gives me terrible migraines again I think this is genetic because of a SNP in the enzyme that converts it to GABA.)

    My blood tests always show I am below the range in protein even though I eat around 90g daily and as I am quite small that should be a large daily intake but it doesn't seem to be reflected in my blood tests.

    Pam
     
  4. trishrhymes

    trishrhymes trishrhymes.wordpress.com

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    Hi Pam, I see you are in the UK. I'm wondering how you manage to get genetic test and blood tests for protein. On the NHS or private?
     
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  5. bertiedog

    bertiedog Senior Member

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    @trishrhymes Its just in the annual ones that my GP runs for me. Not sure if he includes it because I am steroid dependent?

    Pam
     
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  6. Mary

    Mary Senior Member

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    @Sasha - BCAAs cut my PEM recovery time in half. They consist of leucine, isoleucine and valine. Unfortunately they have not extended my activity window (the amount I can do before triggering a crash), but the cut in recovery time is fabulous. I've been taking them for about 2 years now.

    I've been taking lysine for a long time for herpes viruses.

    I know I'd be worse off without these amino acids - amino acids can be very effective for specific things.
     
  7. Sasha

    Sasha Fine, thank you

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    Thanks, Mary.

    I didn't know what BCAAs were so looked it up! Here's the info for others:

     
  8. alicec

    alicec Senior Member

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    A word of caution about whey protein. I first tried this many years ago and had an extremely adverse reaction. I no longer remember the details but it think it was an excitatory-type response. Agitation, hyped-up, insomnia. It was extremely unpleasant.

    At that time I was supersensitive to many things (MCS-type reactions) so I just added it to the long list of things to avoid.

    Years later and in the second iteration of the disease when MCS was no longer an issue and I could tolerate many things that had once been intolerable, I decided to try whey protein again. This time I went for a product much like the one described by @Murph - a highly purified hydrolysate.

    Utterly intolerable again. I did some research on what the problem could be. The best I could come up with was that many protein isolate, particularly hydrolysates, contain a lot of free glutamate. I am sensitive to the latter so possible this is the reason.

    Before the Fluge and Mella paper appeared I had figured out from OAT tests that I was burning a lot of amino acids for fuel and not keeping up the supply judging by Kreb's cycle markers.

    I already eat a fairly high protein diet and couldn't see how I could eat any more food, was not willing to try protein powders after the whey episode, so decided to supplement an essential amino acid mix.

    It did help a bit with energy for a while but eventually I noticed a deterioration in mood. Presumably that particular mixture was adversely affecting neurotransmitter balance, as seems to have happened with @bertiedog.

    Since the Fluge and Mella paper I have retrieved branch chain amino acids from the useless supplements box and will give them another go. Otherwise I am considering trying some individual amino acids. I may try the essential amino acid mix again since it did give an initial energy boost. This time I'll try pulsing.

    So trying to bypass the PDH block with additional amino acids is, as usual, fraught with difficulties related to our own individual sensitivities!
     
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  9. deleder2k

    deleder2k Senior Member

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    Norway is not a member of the EU. No difference if I order from the UK or the US! :) One thing that sucks is that many shops in the EU refuse to ship to Norway because they then would have to deal with export papers and so on.

    I ordered from bodybuilding.com. I found a 10% coupon (PLATFORM10). Probably more money down the toilet, but why not! :D

    Spent a years salary on medicines/supplements to treat this disease. The result is no improvement, and cash out the window like this:

    [​IMG]
     
    Last edited: Dec 31, 2016
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  10. Mary

    Mary Senior Member

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  11. knackers323

    knackers323 Senior Member

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    this thread is interesting. about half way down the page the member Edie says that they recommend testing and then treating individual deficiencys as the shotgun approach didn't work for them and, they say can make things worse.

    http://www.healthrising.org/blog/20...hronic-fatigue-syndrome-starvation-australia/

    I remember years ago there was a dr. nash petrovich that apparently "claimed" a very high success rate for cfs, his treatment was very expensive. the treatment was.... amino acids.

    maybe he wasn't a conman after all. ?
     
  12. South

    South Senior Member

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    Just that soy is one of the strongest goitrogens (bad for the thyroid), and best not eaten in excess.
    http://paleoleap.com/goitrogens-and-iodine/
     
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  13. trishrhymes

    trishrhymes trishrhymes.wordpress.com

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    Thanks for the warning. I think I'd better think again...

    It's all too complicated...:bang-head::bang-head::bang-head:
     
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  14. Rick Sanchez

    Rick Sanchez

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    3-5 years ago (kinda lose track of time when you have CFS... )

    I had a custom made amino acid mix made for me which I took twice a day, and I took protein powder twice a day (60gx2) as well as a lot of other supplements often mentioned here, L-carnetine, glutamine twice a day and so on. It was all based on some ''science'' about a rather dubious experiment conducted 10-15 years ago about how CFS sufferers lack amino-acids.

    I was at the time, and am still pretty sure that I got quite a temporary boost from all the supplements. I was actually able to work out, and eventually managed to bench press my own body weight without a problem (which was quite an increase) In the end though, I stopped having any positive effects at all and am now worse than ever, can't do any sort of hard physical exercise (I curse my self every time I run after a bus / train).

    I feel like the temporary boost has done more harm than good. Although I was able to exercise a lot more, and felt like I had more energy, my mind fog was gradually becoming worse, and I now have a harder time focusing than ever. In fact I had to drop out of my studies. My energy level is also at a all time low, and I feel like I am nearing being housebound, despite pacing myself and all that jazz.

    I doubt the supplements made me worse, but the increased level of activity which came along with the supplements probably did.
     
    Last edited: Jan 1, 2017
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  15. Sasha

    Sasha Fine, thank you

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    Sorry to hear that, @Rick Sanchez. Thanks for posting your experience.
     
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  16. L'engle

    L'engle moogle

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    I've taken whey protein off and on through the years. A serving seems to provide a small benefit (same as any serving of protein but give me one for the day I don't have to cook) but additional amounts didn't provide extra benefit. I gave up on the last one I tried because the stevia flavoring was crashing my thyroid. I'd like to try a goat whey protein and see if the mix is any different or better.
     
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  17. Cheesus

    Cheesus Senior Member

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    @alicec

    Have you ever taken N-acetyl-cysteine? Your reaction to whey reminds me of my reaction to NAC, and cysteine is a standard amino acid present in whey formulas. When I used NAC it made me so ill. It was like it put its finger directly on whatever is causing my ME and started jabbing wildly. I am convinced that if I had kept taking it I would have died.
     
    Last edited: Jan 1, 2017
  18. alicec

    alicec Senior Member

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    I can't tolerate NAC either (or glutathione). So yes, maybe the cysteine in whey is a problem along with the glutamate.
     
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  19. Cheesus

    Cheesus Senior Member

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    @alicec

    I'm fine with glutathione. It doesn't do anything one way or another. NAC, on the other hand. ruined me. Apparently it stimulates T-cells, so I have my suspicions that I was aggravating autoimmunity.
     
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  20. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    Just sipping some cranberry juice with this stuff (tastes like sick :( ) and wondering if I'm supposed to put it in food, or whether it matters. Hoping for no nasty side effects. Will report back if there are any. If there's one thing I know from experience, things that can help symptoms don't necessarily give me more ability to do physical activities beyond the usual routine. I think I'm mainly just looking for some element of symptom relief rather than widening my horizons. So, even if this does have a positive effect, I'll be assuming my physical limits are the same as always.
     
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