New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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CFS Gone for Now. Will it last.....

Discussion in 'General ME/CFS Discussion' started by gregh286, May 3, 2017.

  1. gregh286

    gregh286 Senior Member

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    Hi,
    For last 2 weeks (short time i know) CFS has completely abated. No symptoms. Zero. Zilch.
    I know its an early post but if it can help one person more, its worthwhile.
    I have been sufferer 5 years, at times bedridden. I never had a period that faintly resembled this.

    I have wrote extensively about my success with amino acids that help my symptoms tremendously and it was impossible to do without them when i crashed in past.

    I used to think that using high dose arginine that was related to NO, as Fluge and Mella previously hypothesised. I am pretty sure now that is not the case, that the body was soaking it up as alternative fuel when PDH pathway is interrupted. Reason being, I get same relief in high doses of glutamine, TMG or carnitine. My serum glutamine and glycine levels were very low in past, supporting the research in amino acid traits in male v female.

    This recent recovery has coincided with me starting Vit d (25k), vit e (400ui) and Equilibrant X 6 day.
    I haven't used amino in 2-3 weeks.
    To what supplement do i owe this sudden purple patch, I am not sure. Backed into a corner would go with equilibrant.
    I used equilibrant in past when i was pretty bad and seemed to help marginally.
    But now i added it when I was fairly decent (maybe a 80/100) and seems to have propelled me to the dizzy heights of normality.

    Have CFS long enough to know that one swallow does'nt make a summer, so will tentatively enjoy it for now.
    Any questions, feel free.
     
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  2. Johnskip

    Johnskip Senior Member

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    what is equlibrant??
     
  3. Diwi9

    Diwi9 Senior Member

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    @gregh286 - I followed your thread on amino acids and had the same effect, although the boost I got did not last as long as yours. My history includes a prior remission/plateau, so you and I may be is a sort of subset that can improve???

    You say you have zero symptoms, even during my remission I had a couple of symptoms. Did you suffer from cognitive dysfunction when you were ill? If so, are your memory and ability to concentrate back to pre-illness levels?

    Thank you for sharing your experiences with us, it certainly has helped me regain some functionality.
     
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  4. AdamS

    AdamS Senior Member

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    Great news...enjoy it, I really do hope it lasts!
     
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  5. gregh286

    gregh286 Senior Member

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    Here's the thing about aminos.
    I emailed Janet also about it.
    If you take aminos at 9am and next one at 3pm not have same effect I noticed. You have to continually feed it to body.
    At the end up in was taking 50g a day glutamine. Like 3 or 4 g every hour. Sip it all day long.

    50g sounds a lot but it was providing fuel for body maybe by itself!

    If you bang in 25g in first hour body just flush it out.....it has to be continually in blood over the day.
    I didn't have brain fog since 2012. I didn't battle it much. I had brutal fatigue and very lactic muscles. Feelings of dread....palpitations....twitches. like anyone had quite a wide spectrum of symptoms. Infections took longer to clear....loss of personality...libido....

    It all comes back to normal at same time when energy cycle get restored. Body in crisis when energy cycle turned off......body highly anxious at cellular level because of it.

    I think equilibrant has turned down a vicious autoimmune response that we have. Vit d maybe synergistic with it also as an immune suppressor.
     
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  6. Diwi9

    Diwi9 Senior Member

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    @gregh286 - I tried Equilibrandt in the past, but was in sustained PEM for many weeks and was tired of taking so many supplements. I'm doing much better now and working on being more selective about my supplements and will give it another go.

    Dr. Myhill talks about having to sip D-ribose throughout the day, so your advice on amino acids seems appropriate too.

    I tend to do better in warmer weather, so I hope this recovery continues for you. Please continue to keep us posted periodically. Very happy for you for your recovery! :)
     
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  7. AdamS

    AdamS Senior Member

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    Just touching on your point about Amino acids, I find it interesting that a lot of people seem to benefit quite significantly from supplementing them but Fluge & Mella say this in the discussion section of their paper:

    I realise this is focused on female patients though.
     
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  8. gregh286

    gregh286 Senior Member

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    Didn't fully committed to dribose.
    Can't really see how it works if the glucose cycle is disrupted.
    Yeah warmer weather was a godsend. Very good at clearing lactate via increasing vasodilation and improving cellular respiration.
    I had a sauna installed at home such the benefit of heat.
     
  9. gregh286

    gregh286 Senior Member

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    Yeah but we need to flood our bodies with them to instigate krebs. Normal is not enough.
     
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  10. Silencio

    Silencio Senior Member

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    @gregh286 amazing news for you. Could I just ask a few more details about your supplementation?

    do you mean 25000 IU of Vit D a day? Where do you source that strength supplement?
    You say up to 50g glutamine per day.. what other aminos at what dosages worked for you?

    I just started bcaas w glutamine and I think they are helping but it's only 2g glutamine per day so if have to really ramp up to try your approach.
     
  11. Diwi9

    Diwi9 Senior Member

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    @AdamS - I saw an interview with Mella and he stated that they believe a subset of PWME would benefit from L-Arginine and recommended people try it to see if they would respond. He also said the effect would not last. That has been my experience. I will try to find the interview and post it.
     
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  12. gregh286

    gregh286 Senior Member

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    Yes 25k ui. Thorne research do it.
    If I use arginine instead of gluatmine I need about 12-15g a day BUT you need timed release like NO2 black.
    TMG would need 12-15g also as replacement. Glutamine is best as.its most abundant in body.
    If you use standard arginine it will get washed out too quickly.
    Don't be scared of aminos.
    What we deal with daily is x100 worse than overindulgence in aminos.
     
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  13. gregh286

    gregh286 Senior Member

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    I think arginine not as robust as glutamine. Fluge and mella from what I know didn't play with aminos like I did.
    They noticed PWME improved after 5g of arginine. I don't believe they played with doses or alternatives. A single dose of 5g arginine non timed release would give you quick boost temporarily I would agree with them on that.
    To get sustained energy you need to drip in 1 or 2g an hour. Cells will have continual fuel.

    But I reiterate that aminos only address symptoms...they have no impact on the root.

    I believe the rituximab trial will be partially successful as there is an autoimmune fault at heart of this. But I was hoping I can bend it back without ritux.
     
    Last edited: May 3, 2017
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  14. Diwi9

    Diwi9 Senior Member

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    @AdamS - Here is the video, the pertinent conversation begins at 15:50. Fluge advises against trying supplements without studies, but then Mella says to try it and it may work, but tolerance will develop. I find it interesting that they discuss how each patient's supplementation needs are different, it made me think of Chris Armstrong's SolveME/CFS youtube discussion.
     
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  15. Diwi9

    Diwi9 Senior Member

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    I love glutamine. I also take L-Ornithine.
     
  16. gregh286

    gregh286 Senior Member

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    See that....http://cfsandme.co.uk
    This where I took original idea.
    His potion is glutamine and ornithine AKG.
    Emailed Paul a few.times. real good guy.
     
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  17. AdamS

    AdamS Senior Member

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    @Diwi9 @gregh286 I bought a big tub of Jarrow L-glutamine a while back, the dosage is 2g, after a few days I didn't notice any benefit. What dosage works for you and is L-glutamine technically the same thing as glutamine? Sorry if this sounds like a silly question haha.
     
  18. gregh286

    gregh286 Senior Member

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    I was taking 50g a day in crashes. I could feel a turn after about 6-8 hours.
    Ramp it up in case it doesn't agree with you.
    Not sure about glutamine V l glutamine.
     
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  19. Diwi9

    Diwi9 Senior Member

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    I use the same brand: Jarrow L-Glutamine. I take 2-4g per day. I tend to start the day with aminos, then again later in the day when I feel less energy, sometimes at night too. L-Arginine was very powerful for me. It has vasodilation effects, which is probably why it made me feel so much better so fast. I also add some monohydrate creatine to my water. Like @gregh286 said, this doesn't get to the root of the problem, but does help symptoms in some people.
     
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  20. gregh286

    gregh286 Senior Member

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    Yeah arginine is turbo like. Helps clear lactate from the vasodilation.
    Glutamine is a calmer...better consistent flow of energy from it i found.
    I'm surprised you got anything significant.from 2g.
    You should see further improvements on larger doses.
     
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