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    Supplements

    Morning Everyone,
    Still getting my head around this whole diagnosis thing!
    Also still waiting for first appt at MND clinic after 6 weeks ( yes I just chased them up!)

    I am interested in self help, specifically in diet at the moment.
    I guess there will be lots of opinions here but I’m listening...

    Question?

    What supplements/food are you guys all taking and feel make a difference-or not?

    Also any other ideas?
    Waiting with interest...
    Marigold

    #2
    Hi marigold,

    You may find the link below of interest. Click on the information about supplements to find the evidence.
    http://alstuttu.org/wiki/index.php?t..._their_effects
    Best wishes,
    Barry
    I’m going to do this even if it kills me!

    Comment


      #3
      Marigold,

      To answer your original question these are the supplements I take. Whilst there is no proof of the value, I believe they boost my immune system.

      Moringa 500mg x 2
      N-Acetyl Cysteine 600mg
      Turmeric 500mg
      Krill 500mg
      D3 5000iu
      Extra virgin coconut oil

      Best wishes
      Barry
      I’m going to do this even if it kills me!

      Comment


        #4
        Hi Marigold
        I take the following supplements ,and since taking I don't feel as tired as I used to do, but I don't know if it's in my head or not but shall carry on with them.

        Magnesium
        Omega 3
        Vitamin B12
        Folic acid

        I also take CBD oil and I can say that works on Fasciculation I still get them but no where as bad.

        I tried the coconut oil and it didn't suit my stomach , which is prone to IBS anyway

        Good luck with experimenting with them

        Love Chris
        Last edited by raymond; 23 July 2018, 08:14.

        Comment


          #5
          Brilliant! Great reading here.
          Thanks so much for this.
          Has anyone else any thoughts or experiences?
          Really grateful,
          Marigold

          Comment


            #6
            ...particularly interested in the B12 injections too!

            Comment


              #7
              Hi Marigold I will add my post from a similar thread.. Take care.
              http://forum.mndassociation.org/show...are-you-taking

              TIANDB long List.
              Hi Guys I will throw in my TIANDB long List and you will have to google or web search for clues. I actually got most of other MND sites it is a long list but I have been slipping down this slope quite quickly. Not halted anything yet although I feel somewhat positive here goes Ho Ho
              I take in 4's so 1 x 4, 2 x 4 or sometimes 3 x 4 even 4 x 4 . And before bed x 4..
              Now I add the Honey to Tea and mix the teabags some Pepp/Nettle Pepp/Green
              MJ = Magic Juice ha

              Nettle Tea ( Anti O and full of good )
              Green Tea ( Anti O and good also )
              Earl grey Tea ( Anti O and Bergamot is Autophagy Enhansing )
              peppermint Tea ( Digestion friendly Helps with Inflammation )
              Peony Leaf White Tea ( Anti O Anti Virus & Inflammation )
              Coffee ( Energizing and positivity )
              Honey ( Anti O Repair Wound healing properties )
              EV coconut Oil a few T spoons a day ( The healthiest Fat IMHO )
              Vit C effervescent 1000mg MJ ( Repair )
              Energy effervescent MVit MJ ( Repair )
              Bacopa Monnieri ( Anti O Increases Neuron dendrites ? )
              Gotu Kola 420mg ( Anti O Increases Neuron dendrites ? )
              Creatine ( Muscle enhancement and Repair )
              Vitamin E ( Anti O Repair )
              Vitamin B Complex ( Energy and Repair )
              Zinc Gluconate 50mg ( Immune system and Energy )
              Curcumin Complex 800 mg ( Anti O and anti Inflammation )
              Iodine 225 mcg ( Repair )
              Selenium ( Repair )
              Milk Thistle ( Anti O Anti V anti Inflammation )
              Magnolia Bark 400mg ( Repair and Sleep Aid )
              Nicotinamide B3 500mg ( Repair/ brain health )
              Apple Cider Vinegar a few drops in my Effervescent MJ ( Good )
              Cod liver Oil 1000mg ( Vit D, A, Anti Inflammation )
              Alpha Lipoic Acid 400mg ( Repair )
              Beta Glucan 250mg ( Repair )
              Senna tab before bed. ( Occasional ) ( Digestion )
              Distilled Smart Water : MJ ( Removes Contaminants )
              Lions mane Before bed ( anti inflammation, Anti anxiety, repair )
              Lithium Orate before bed ( anti Anxiety )
              Melatonin Before Bed Occ ( Sleep Aid )
              Robitussin Dry Cough Medicine For whenever Coughing.
              A tot of Amaretto in my effervescent magic drink. MJ
              Occasional Bottle of beer.. ( Read somewhere Alcohol slight benefit for LMND )
              Robinson's sugar free Orange and pineapple: MJ
              Cooking. I use butter/ EV olive oil and EV coconut oil..( Just good )

              Take care all.
              Last edited by TIANDB; Today at 23:42. Reason: Updated 22/6/18
              Last edited by TIANDB; 3 September 2018, 21:45. Reason: Updated 2/8/18

              Comment


                #8
                Thanks TIANDB
                That is indeed a comprehensive list!
                You must have large kitchen drawers��
                I am taking folic acid, B complex and milk thistle.
                I plan to add any more one at a time and will explore some more. Need to feel like I am actually doing something useful.
                Thanks again everyone
                Marigold
                I

                Comment


                  #9
                  Thanks everyone for the advice about supplements.
                  It's really helpful to know what people are taking and what seems to work. I guess we cant measure the effect that supplements and diet have on our progression but it's good to feel we are taking some control.

                  I have always tried to eat healthily and keep fit but since I have been diagnosed I have fallen off the healthy eating wagon and am just eating what I enjoy.

                  I probably needed to get a grip and go back to healthy eating and look at some of these supplements.
                  Love Debbie x

                  Comment


                    #10
                    I'm the same Debbie about comfort eating. I have put on weight. I joined a gym last week which has made me feel more focused and with some control in keeping my heart fit and ditto the rest of my body, the best that I can. Got a referral to the Beats scheme from my physio. I only take vitamin D in the winter as not enough sun to absorb it naturally. I don't take anything else but try to eat a balanced wide variety diet despite a bit of comfort eating, bread being a favourite.
                    Last edited by Lynne K; 23 July 2018, 17:36.
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                    I'm staying positive and taking each day as it comes.

                    Comment


                      #11
                      Hi Everyone,
                      I saw prof Shaw yesterday for an review and asked her directly about supps.
                      I already guessed what her answer would be but just wanted to get it from the 'horse's mouth' as it were! (no offence meant there)
                      She said there was no scientific evidence of any benefit except if you have been found to have a deficiency. I was found to be deficient in Folic acid so this was prescribed.)
                      BUT she didn't say don't take any and I was listening carefully.
                      So I will carry on adding slowly to my little list.
                      At best I need to feel like I'm being positive and proactive and beyond that - who knows!

                      Is anyone else STARVING all the time?
                      I seem to have gone right off sweet stuff and believe me, I always loved it. Now I'm just desperate for my next meal...
                      Not looking good for the weight management I fear.

                      Marigold

                      Comment


                        #12
                        Hi Marigold. This is standard advice from the medical profession. They dont believe in supps. But aids is treated with around 100 compounds. Some of them are supps. So, if his condition is ever to be treated, its likely that it will have compounds found here on earth. Someone one day will find a treatment. And it will be compounds that are available,

                        Do your own research, go slowly and add one thing at a time.

                        Listen to your body. Its telling you that it needs fuel. So give it. Dont worry about the extra pounds. You may have weight loss later and the last thing you need is to feel weak. Food is medicine.

                        Comment


                          #13
                          Thanks Ali_Chris
                          Very reassuring advice. I guess we are all doing our own research. I will persevere...

                          Is it lunchtime yet???
                          M

                          Comment


                            #14
                            Originally posted by Marigold View Post

                            Is it lunchtime yet???
                            M
                            It is if you say it is

                            Comment


                              #15
                              Yes Marigold, Chris is right - don't worry about putting on a bit of weight, but as your progression is on the slow side, probably best not to go overboard!!

                              I wonder if your increased appetite is attributable to any medicine or supplement you've started taking? It can be a side effect of some.

                              It's worth mentioning to your GP if you think your appetite has substantially changed.

                              Good luck with the supplements!

                              Love Ellie.
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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