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Thread: Fungal and microbial ?

  1. #11
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    http://www.nrronline.org/article.asp...;aulast=French

    Another interesting article suggesting a link between ALS & fungi present in grass and drinking water.

  2. #12
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    Curcumin believed to have positive affects in treating ALS.

    https://www.neals.org/for-people-wit...her-als-x-file

    ALS untangled also investigating use of curcumin, feel enough evidence for them to start a trial.

    Coincidentally curcumin also found to be effective against strains of fungi.

    https://academic.oup.com/jac/article/63/2/337/711570/

    https://academic.oup.com/mmy/article/50/1/26/989367/

  3. #13
    Forum Member Gillette's Avatar
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    Quote Originally Posted by Ash View Post
    Curcumin believed to have positive affects in treating ALS.
    I'm surprised how depressed this makes me feel. I'm on the MIROCALS trial (obviously don't know whether I'm on the drug or the placebo), because of that I'm on Riluzole and, prior to coming into hospital, I was taking curcumin, and yet my MND seems to have progressed quite quickly. It doesn't feel very fair. I know life's not fair but, for once, I'd like not to have the short straw.
    Dina


    Trying to keep positive, but not always managing.

  4. #14
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    I know I had to stop reading it, made me feel really down. My MND seems to have got worse lately. Like you said Dina, life's not fair.
    Sheila.

  5. #15
    Forum Member Barry52's Avatar
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    I listened with interest to the webinar from Richard Bedlack who is a respected American researcher. The conclusion appears to be that taking the correct form of curcumin is important. For those that don’t wish to listen to the webinar the recommended type is Theracumin. I have been taking curcumin for a year now and whilst I cannot substantiate any improvement in MND progression as I have a slower type of the disease, I do believe that the benefits as an anti-inflammatory are worth the low cost.

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

  6. #16
    Forum Member Ellie's Avatar
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    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.

  7. #17
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    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

  8. #18
    Forum Member Ellie's Avatar
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    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.

  9. #19
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    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?

  10. #20
    Forum Member nunhead_man's Avatar
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    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. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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