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Thread: Fungal and microbial ?

  1. #21
    Forum Member Ellie's Avatar
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    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.

  2. #22
    Forum Member Ellie's Avatar
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    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.

  3. #23
    Forum Member nunhead_man's Avatar
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    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; 9th October 2019 at 16:06.
    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

  4. #24
    Forum Member Ellie's Avatar
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    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.

  5. #25
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    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.

  6. #26
    Forum Member nunhead_man's Avatar
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    Hi Ellie

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

  7. #27
    Forum Member nunhead_man's Avatar
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    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. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  8. #28
    Forum Member Ellie's Avatar
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    Quote 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.

  9. #29
    Forum Member nunhead_man's Avatar
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    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. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  10. #30
    Forum Member Ellie's Avatar
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    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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