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    #16
    Hi Ash,

    Many thanks for the NEALS link.

    For those interested in taking the type of curcumin recommended; the specific brand of theracurmin in the trial is Integrative Therapeutics, available with shipping from the US.

    Any improvement, if it's going to happen, usually occurs in under 6 months, so it's not too expensive to buy (although it is more expensive than curcumin and other brands of theracurmin)

    This formulation was shown to have high bioavailabilty and to affect the faecal microbiome (which is good) and the recommended trial dose is delivered in 2 capsules per day.

    Dr Bedlack did say that they've not seen any positive effects in PLS, but that's not to say it's not providing other benefits to the body, as Barry says.

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

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      #17
      Hi Ellie,

      Just joining together the dots from what you said.

      The fact curcumin effects the microbiome would to me suggest that it may indeed have anti-microbial properties (or for arguments sake possibly pro-microbial).

      Also, the fact that its modification of the microbiome is viewed as a postive outcome is interesting. Although the mechanism is unclear, could it be that this is a possible source of infection. For example does a reduction in competing microbes leave the opportunity for a growth in fungi.

      It genuinly keeps me awake a night thinking that this could be the root cause of this condition in at least some cases. I could list many sources of information that I think suggest it is a possibility.

      Going back to the original article I think it would really be worth a recognised institute of reseachers looking to see if they can independantly verify these finding. I.e. that fungal strains can be found in the CNS of patients with ALS.

      If a million pounds was to magically appear in my bank account thats the first thing I would try to fund.

      Ash

      Comment


        #18
        Hi Ash,

        This whole area has gained much momentum in recent years, but still is moving way too slowly for us.

        There are studies which showed the presence of fungal antigens, as well as DNA from other fungi, in the CSF and frontal cortex area the brains of people with ALS.

        The conclusion was; "Collectively, our observations provide compelling evidence of fungal infection in the ALS patients analyzed, suggesting that this infection may play a part in the etiology of the disease or may constitute a risk factor for these patients."

        So, if you were the lucky winner of last night's Euromillions you know what to do with a few million quid!!

        Take care,
        Love Ellie.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
        Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #19
          Hi Ellie,

          This is the research I was refering to. If you read through the ALS untangled report for antifungals they review this reserach and are quite sceptical of the findings and the way they were undertaken.

          https://www.tandfonline.com/doi/full...1.2019.1622197

          However they conclude that it is an intriguing hypothesis and suggest further work. That is why I think it needs to be recreated/verified by a recognised MND organisation.

          I did play the euros but unfortunatly I didn't have the winning ticket. Maybe the winners would lend us some?

          Comment


            #20
            Good afternoon all

            Hey Dina and Sheila - I am sorry to hear what you have to say as I also think I have drawn the short straw as most of my family live into their 90s and I am not 70 yet.

            As with Barry, I listened to Dr Bedlack talking about the "micro-biome".

            I am still wondering whether this is one of the steps that lead non-familial MND sufferers towards becoming sufferer, but the jury is clearly very well out in this regard.

            I take natural yoghurt and various other things to keep my stomach healthy and of course being vegetarian, tending to vegan, I do not take in the kind of bacteria that seem to be implicated in the nastiness described by Dr Bedlack
            Warmly


            Andy

            ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

            "Things turn out the best for people who make the best of the way things turn out"

            Comment


              #21
              Yes, I was talking about clinical evidence that fungii are present in the CSF & brains of certain people with ALS.

              As you pointed out, antifungals didn't prove to be wonder drugs, so we're left with the usual chasm between research and treatment
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
              Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #22
                Andy, you could take a good probiotic supplement - natural yoghurts alone can fall short in both type and quantity of probiotics. (I am also vegetarian and eat a lot of vegan food)

                Given your relative small loss of function - and I'm conscious of my use of relative, as any loss of function is life changing - would you be interested in trying Theracurmin for 6 months?

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

                Comment


                  #23
                  Good afternoon Ellie

                  Thank you for your comments - where is the best place to get this stuff from as I will try anything once!

                  I know this place in Vancouver in, BC Canada who might ship it - https://lifestylemarkets.com/contact-us/
                  Last edited by nunhead_man; 9 October 2019, 15:06.
                  Warmly


                  Andy

                  ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                  "Things turn out the best for people who make the best of the way things turn out"

                  Comment


                    #24
                    Bedlack recommends Theracurmin by Integrative Therapeutics, rather than the bog standard brands, due to its greater bioavailabilty and ability to be detected in the faecal microbiome.

                    If you search for it, a couple of US based sellers pop up. Amazon don’t ship it to the UK, but others do.
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #25
                      As far as I know the only documented report of people using antifungals for ALS is below.

                      https://thewinnower.com/papers/6072-...eral-sclerosis

                      Interesting to read but should probably be taken with a pinch of salt as bold claims of improvements are made.

                      However lets not completely rule it out. Similar improvements have been noted in people with ALS like sysmptoms which have turned out to be related to HIV infection and possibly I think lyme desease.

                      Comment


                        #26
                        Hi Ellie

                        Okay - will have a look later when I get near a safe machine
                        Warmly


                        Andy

                        ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                        "Things turn out the best for people who make the best of the way things turn out"

                        Comment


                          #27
                          Hi Ellie

                          I seem to have made an order from somebody who will ship to the UK of the type of Theracurmin by Integrative Therapeutics you mention.

                          Now waiting to see how much I get charged as it comes through customs!
                          Warmly


                          Andy

                          ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                          "Things turn out the best for people who make the best of the way things turn out"

                          Comment


                            #28
                            Originally posted by nunhead_man View Post
                            I seem to have made an order from somebody who will ship to the UK of the type of Theracurmin by Integrative Therapeutics
                            Hmmm, it strikes me that you don't do as much online shopping as I do

                            Hope they get through Customs easily and quickly. You never know, they may make it through without charge!

                            You should be only liable for VAT is the order value is between £39 and £135, plus Royal Mail's £8 handling fee.

                            Good luck.
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                            Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #29
                              Hi Ellie

                              I ordered six month supply in the hope it would work and so paid over that amount, and now seem to have call from the Post Office for just over £50 for customs duty or something
                              Warmly


                              Andy

                              ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                              "Things turn out the best for people who make the best of the way things turn out"

                              Comment


                                #30
                                50 quid duty on 6 months supply isn't bad, Andy.

                                Wish you luck from the bottom of my heart!

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

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