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Thread: Possible help

  1. #1
    Forum Member john's Avatar
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    Possible help

    This was posted yesterday on alstdi. The person in question does not have a confirmed diagnosis but symptoms suggesting bulbar onset mnd.

    deb1aw
    Posted: Tuesday, April 21, 2015 2:41:27 PM
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    Quote
    "My sister just posted to her fb wall.

    "I have to admit I feel like my voice is getting better, my tongue seems to have a bit more strength, I am not having as much trouble eating/swallowing and I am not having as many hand/arm cramps as I have been having the last few months. I almost feel like I was last Fall. Not back to normal but better than I have been. Let's hope all the things I have been doing since March 25th are making a difference. Toxins are everywhere and in sooo many foods and household products. When you learn about them you will want to throw out so many things from your cupboards and fridge. They build up and many eventually affect your brain as they have done with me. My sister has been a wonderful researcher and supported to help me make these changes. Everyone please stay away from MSG (it is in almost all processed foods and sauces by different names), artificial sweeteners, and sugar for your own health. Eat lots of antioxidant foods and take good probiotics. Brain issues start in the gut and liver."

    and

    "I must add that I have never been one to eat much processed food. Almost always cooked homemade foods but I would use Worcestershire sauce, HP sauce, salad dressings and canned tomato products."

    Aside from removing toxins from food and skin (she has not used any soaps or shampoos) so far my sister is mostly just doing diet with a few additions:

    flax seed oil,
    turmeric.
    probiotics,
    high potency magnesium,
    curcuma,
    resveratrol, more
    Omega 3 and
    vitamin D3
    coconut oil

    She is also taking a tincture with Old Man's Beard. She is taking a lot of probiotics, I think with every meal. She went to a native energy healer that came highly recommended by one of my brother's friends and the tincture came from there. I researched it and it had exactly the properties that I was looking for to put in her, so I thought it was a good addition. She's been taking it with a raw honey because it tastes so awful, and raw honey also has anti-bacterial properties.

    A big problem with this disease is absorption and probiotics are simply going to help. She is having her flax seed oil in cottage cheese. There are things I don't like about cottage cheese, but it does keep coming up as having something good, and it is soft and was easy for her to eat.

    I do believe she's doing 2 tablespoons of coconut oil every meal.

    Nothing is evaluated by a doctor at this point but we appear to be on the right track in doing something to help her.
    Sister does not have a diagnosis, but March 25, 2015 the neurologist told her she thinks it is bulbar ALS, but not progressing as fast as it normally does. First symptoms June 2014."
    There is no guarantee that this will help anyone else but it may be worth trying. As ever check with a doctor first to make sure nothing will react with any medication you are already taking or will harm you in any way.

    John

  2. #2
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    An encouraging post John, it shows others that a few supplements and a better diet, can create improvement
    or at least a feeling/sense of holding progression back,...he's strengthened his body,

    But i feel knowledge of his efforts, on the other side of the water, will largely fall on deaf ears here,
    You don't get anyone here saying they're trying things, nobody suggests things to try, mix and match,
    All you ever see is Medications/Drugs, for every ailment under the Sun,
    One or two ambitious one's take Quells or Pineapple as "alternatives", but i suspect that's the limit,
    Nearly all it would seem, are quite happy posting trivia, saying nice things to each other,
    Hugs by the bucketload, when did a hug relieve a lump of Phlegm stuck in a throat all day, every day?
    Enough on the chat-room...


    The guy's got the right idea, strengthen the body, to slow down progression,
    Remove Toxins,..i use Bio-Chelat, take lots of Antioxidants, and Probiotics (Gut Flora)

    He says..."Brain issues start in the Gut and Liver"....i would guess most illnesses start in the Gut,
    Everything that is ingested into the body, foods, toxins, etc, must go through the Gut, it's the body's
    first line of defence for the Immune System,...so maybe Gut Flora is lacking, when MND starts????
    I notice he's taking a few plant supplements, Resveratrol is an antioxidant, derived from plants,

    Whatever his final diagnosis, if Neurodegenerative, there's no cure, so he's doing the right thing,
    It's good to see others having a go,..instead of waiting on job-savers in Research,

    Research will never find an effective treatment for MND, as long as they've got a hole in their backside,
    They go about it wrongly,...targeting one possible issue,..a protein, a gene, etc.
    Genervon have the proper approach,..a multi-target remedy/drug,..dealing with lots of issues,

    Keep well,

    Ray

  3. #3
    Forum Member john's Avatar
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    Cheers Ray,

    I toss these on the water. You have converted a couple of people to trying to make a difference. This is a lady trying to save her sister . The sister sounds to have mnd from symptoms described but as yet only an opinion that she has bulbar onset mnd but no formal diagnosis. There are several people like you who report success with cocktails of vitamins and supplements so there must be something in it for some patients. The other thing is that most report arresting the disease. Surely if that is going to happen then the sooner you get started then the more functions you save. I am sure you would have loved to have been on the right track a couple of years sooner if someone pointed the possibilities out to you.
    The medical profession are generally dismissive and put these "remissions" down to misdiagnosis but I have a lot of faith in yours and their success. I did see a report the other day though relating to Alzheimer's research by a leading establishment that found that taking B6,B12 and omega3 made a difference to mice with Alzheimer's and they are now going forward with human trials to see if that is going to be a treatment. Will be bad news for the drug industry if it is. It is encouraging that someone is starting to believe that non prescription stuff can make a difference to diseases. Usually they just trot out that if you have a balanced diet you are getting all the vitamins and supplements you need. This may be the case but with a damaged body there is no guarantee that the vitamins and supplements are being processed correctly leaving the body deficient.
    Hope you are remaining stable and enjoying days outside again especially with our current weather.
    John

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    Hi

    My hubby takes a lot of the cocktail Ray has researched and reported on. I source the best products I can, he looks in amazing health, everyone comments on how well he looks, he never gets tired, he does not suffer with drooling, constipation, phlegm, muscle spasms. His main problem is his lower motor neurones are dying off and severely affecting his ability to walk. His costal breathing muscles are affected and he is on overnight nippy and he slurs quite a bit but his swallow is still good. If his walking was better it would be hard to detect he is ill. I drive him to work now 3 days a week only because it's a faff for him to take the leg ortho's off and put back in again. He can drive ok without them. I am getting him a wheelchair to go footy in only because tottenham football ground is undergoing redevelopment and it's a bomb site with uneven pavements and detours. Everything I do is to cut down risk and maintain what he has.
    I am convinced the supplements slow things down, he is on a lot of antioxidants and mitochondrial boosters.
    I have given the Addenbrookes team the list of what he takes, a reference to,your Fishmate supplements on the forum just in case they were interested to do some more research into some of them. Some are quite expensive but he's so worth it lol xxxxx

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    Hi Sylvia,

    I'm glad to hear that your hubby's still looking a picture,
    I know you're careful in what you give him,...but are you giving him anything to stop these Neurons being killed-off?
    It might be quite straightforward, simple even,
    They are behind his Blood Brain Barrier, BBB to most,..and most likely Free Radicals are the culprit,
    Why don't you give him something safe, that'll go through the BBB,..and kill-off the Free Radicals,
    It might be worth trying,..and his walking might remain as it is now,

    Ray

  6. #6
    Forum Member marieline's Avatar
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    Thanks John for sharing the post. It's more or less what our Mad scientist has been advocating so far. I myself agree with the NO MSG, food colouring, additives, so i stick to macro. But what may works for that lady may not work for me but if one is newly diagnosed it gives one a good place to start, and read our Fishmate thread also.
    Best wishes Marieline

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