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Thread: Fungal and microbial ?

  1. #41
    Forum Member Ellie's Avatar
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    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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #42
    Forum Member nunhead_man's Avatar
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    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?

    Quote 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. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  3. #43
    Forum Member Ellie's Avatar
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    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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #44
    Forum Member nunhead_man's Avatar
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    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. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  5. #45
    Forum Member Barry52's Avatar
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    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!

  6. #46
    Forum Member Ellie's Avatar
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    Hi Andy,

    Some basic forms of curcumin are better absorbed if taken with fat (meal)

    If you're talking specifically about Theracurmin by Integrative Therapeutics, there was no difference noted between taking it with food V on an empty stomach, according to Dr Bedlack.

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

  7. #47
    Forum Member nunhead_man's Avatar
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    Good morning Ellie and Barry

    Thank you for the information and the update.

    At the moment I take it in the morning, along with my riluzole which I also take with my early morning substantial slug of coffee.

    In the evening I take it along with my riluzole well after lunch and an hour before I my evening meal, whatever that is although it is not often substantial.

    So it sounds like you are both saying I do not need to change this habit in relation to the effectiveness of curcumin?
    Warmly


    Andy

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

  8. #48
    Forum Member Ellie's Avatar
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    Yes, from what I know about the Theracurmin trial at least, it doesn't matter if it's taken with or without food.

    On a side note Andy; you said you take riluzole with a "substantial glug of coffee" - caffeine is known to potentially decrease the elimination of riluzole from the body.

    Of course it's up to an individual as to what they do with this info - I enjoy my one cup of proper coffee daily and it helps my bowels so it's a case of eyes wide open in my case.

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

  9. #49
    Forum Member nunhead_man's Avatar
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    Good morning Ellie

    Thank you re theracumin - I have now heard from the supplier in the US uses exactly the same that it does not matter whether it is taken with food or without

    Quote Originally Posted by Ellie View Post
    On a side note Andy; you said you take riluzole with a "substantial glug of coffee" - caffeine is known to potentially decrease the elimination of riluzole from the body
    Yes indeed I had heard that caffeine might improve the effectiveness of riluzole - if indeed that what you are saying?

    For me the coffee is a simple addiction, I am pleased to say my digestive system works well at the moment.
    Warmly


    Andy

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

  10. #50
    Forum Member Ellie's Avatar
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    As always it's not so clear cut Andy Drugs are designed with elimination in mind.

    Decreased elimination of riluzole means it builds up in the body which could, in theory, result in increased toxicity.

    However, I can never find any data on how much caffeine, safe or unsafe, may interfere with riluzole's elimination.

    Personally, I continue to have my one daily coffee but keep an eye on my liver function with regular blood tests.

    It's not only caffeine which decreases riluzole's elimination, other culprits are: caffeine, diclofenac, diazepam, nicergoline, clomipramine, imipramine, fluvoxamine, phenacetin, theophylline, amitriptyline and quinolones

    If in any doubt, do ask your doctor.

    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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