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    #31
    Hi Andy,

    Please let me know as I am considering changing my source.

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

    Comment

      #32
      Thank you for your good wishes Ellie - I hope they have some effect

      The charges were as shown as totalling £65.51

      doc00223820191022102819.jpg
      Warmly


      Andy

      ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

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

      Comment

        #33
        Cheaper than doing 3 x 2 month supplies Andy, factoring in 3 shipping and 3 handling charges - you were wise to get a full 6 month supply!
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
        ​

        Comment

          #34
          A humble word of caution from non medically trained me. A high percentage of people with MND who also have a fungal infection would not necessarily mean that fungus is a cause of MND. As stated previously a compromised immune system would be more susceptible to infections of all kinds, including fungal. Care ought be taken before cause and effect is assumed. Lynne
          Last edited by Lynne K; 22 October 2019, 17:28.
          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

          I'm staying positive and taking each day as it comes.

          Comment

            #35
            Good morning

            Oh, caution clearly required, but nothing apparently lost from trying.

            Apart from money!

            I saw part of this and then had to do some thing else and they were talking about reversals.............

            https://healingalsconference.org

            Does anybody have access to the conference video recording or whatever they have that would allow us to view this at our leisure?

            And Barry I realised I did not respond to your message about supplier- my supply came from Naturally Healthy Concepts in Wisconsin - https://www.nhc.com
            Warmly


            Andy

            ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

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

            Comment

              #36
              This thread has morphed into 2 topics !!

              Just to clarify: Curcumin isn't an antifungal supplement, but is an antiinflammatory and an antioxidant.

              Theracurmin is its most bioavailable form, i.e. how much actually is absorbed by the body.

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

              Comment

                #37
                Andy, I watched some (sponsored) live streams from that Healing ALS conference over the weekend.

                Recordings are available for a fee (no idea cost)

                From what I watched, I learned nothing new, but I did not watch every speaker.

                If you look at the schedule and see any particular speaker / topic of interest, you could always contact the organisers.

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

                Comment

                  #38
                  Hi Barry,

                  Just thinking that for you it might be easier for you to buy the Theracurmin on ebay (US site) and use the Global Shipping Programme?

                  Any VAT and Custom Duty due are calculated and prepaid at checkout, so the item is delivered to your door as normal. And no, it's not a rip off!

                  I use it any time I order from ebay US.

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

                  Comment

                    #39
                    Good morning Ellie

                    Originally posted by Ellie View Post
                    Just to clarify: Curcumin isn't an antifungal supplement, but is an antiinflammatory and an antioxidant.
                    Indeed!

                    There does seem to be some confusion in the ALS community in the US of A about this as, of course, both are concerned with gut flora in some way or other.

                    And Dr Bedlack is clear - he believes it is the anti-inflammatory/antioxidant effect that is efficacious as far as I can see.

                    At least this is what I am hoping for!
                    Warmly


                    Andy

                    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

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

                    Comment

                      #40
                      Good morning,

                      Back to report my first week of this trial!

                      The packaging recommends taking two tablets twice a day for a week, presumably to put in some sort of zap and then going back to 1 twice a day for the foreseeable future.

                      The only thing I have noticed is a change in fasiculation, which of course may have nothing to do with taking theracumin - the bicep in my left arm was really thumping and also my legs were twitching last week to the extent I was discussing with my wife the possibility of getting some drugs to control my fasiculation so that I could sleep - and today this has really seems to have calmed down.

                      Of course this could simply mean that one or more nerve fibre(s) has/have now died or it could mean this stuff is having some effect.

                      We live in hope!
                      Warmly


                      Andy

                      ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

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

                      Comment

                        #41
                        Andy,

                        I'm also taking it, but am doing so for its anti-inflamatory properties, rather than to improve my physical disabilities (I'm too far gone but obvs any plus would be a huge Brucie Bonus !!!!) I have noticed a reduction in the frequency I now need to take Ibuprofen for pain - which is very welcome indeed.

                        I believe Dr Bedlack recommends taking 2 capsules every day for the 6 months - you may want to check.

                        Best of luck.

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

                        Comment

                          #42
                          Good morning Ellie

                          Interesting that is having that effect on your painkiller use – I assume there is nothing else going on in your life that has resulted in you being more pain-free?

                          Originally posted by Ellie View Post
                          I believe Dr Bedlack recommends taking 2 capsules every day for the 6 months - you may want to check
                          I just double checked the packaging - it does suggest, as I said, to take double the dose you mention for a week to start with and then go down to one per day, which is what I am now taking
                          Warmly


                          Andy

                          ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

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

                          Comment

                            #43
                            No, Andy, I've not done anything else which could potentially affect my pain levels. As an FYI, my pain is largely mechanical pain caused by weak neck muscles and it is this pain which has reduced as a potential side effect of taking Theracurmin. It has long been touted for joint pain anyway, so this could explain the reduction.

                            Dr Bedlack's Theracurmin trial design is for 6 months of "Theracurmin (Integrative Therapeutics) at 1 BID" - where BID is doctor speak for twice daily, so is different to the dose recommended on the container.

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

                            Comment

                              #44
                              Hello all,

                              I was seeing something somewhere about having to take curcumin with some sort of fat to make it absorb properly - is that a true book?

                              Also having a dig around in a break from work and found this

                              https://www.ncbi.nlm.nih.gov/pubmed/...xFqh_j4WH7cSNg

                              And

                              https://alsnewstoday.com/2019/10/29/...ersals-health/

                              and has there been a proper study of reversals?
                              Warmly


                              Andy

                              ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

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

                              Comment

                                #45
                                Hello Andy,

                                I take a water soluble curcumin in my daily juice drink. It is not a cheap supplement but I believe it improves my general well-being.

                                https://truthorigins.co.uk/products/...e-lime-flavour

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

                                Comment

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