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Thread: ldn=low dose naltrexone/Dr.Jones (Chris) can you help?

  1. #1
    Forum Member Robert's Avatar
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    ldn=low dose naltrexone/Dr.Jones (Chris) can you help?

    www.lowdosenaltrexone.org www.ldninfo.org

    --------------------------------------------------------------------------------

    LDN and Autoimmune Disease
    In Brief Recent Developments Noteworthy Cases Background
    LDN & MS LDN Homepage


    I have been looking at this for a while and approached my GP's whom cannot prescribe it or give a prescription for it.I am willing to give this a try but cannot obtain it,I feel so frustrated sitting here day after day and being denied the right to try and save my own life.
    So if there's someone out there with any ideas let's hear em.Please Note it is LOW DOSE NALTREXONE =4.5mg doseage.


    http://www.lowdosenaltrexone.org/ldn_and_ai.htm

    In Brief

    There is growing recognition in the scientific community that autoimmune diseases result from immunodeficiency, which disturbs the ability of the immune system to distinguish "self" from "non-self". The normalization of the immune system induced by LDN makes it an obvious candidate for a treatment plan in such diseases.

    The experience of people who have autoimmune diseases and who have begun LDN treatment has been remarkable. Patients with diagnoses such as systemic lupus, rheumatoid arthritis, Behcet's syndrome, Wegener's granulomatosis, bullous pemphigoid, psoriasis, and Crohn's disease have all benefited.

    Because LDN clearly halts progression in multiple sclerosis, its use has been more recently extended to other neurodegenerative diseases, such as Parkinson's disease and amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease) whose etiology remains unknown but for which there is suggestive evidence of a possible autoimmune mechanism.
    We are the Champions my friends,we'll go on fighting till the end.

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    Hi Robert,

    No help I'm afraid. I only know of naltrexone from it's use reversing opiate overdose and in alcohol abuse. The low dose website seems to be the only one making claims about it's use in other diseases and it seems scientists disagree with those claims. It may make people feel good but nothing else.
    Chris

  3. #3
    Forum Member Robert's Avatar
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    Thanks Chris,I have been doing a bit more ferreting around and think I can source ldn but will run it past my neurologist tomorrow.

    Regards Bob
    We are the Champions my friends,we'll go on fighting till the end.

  4. #4
    MND Association Digital Media Manager
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    Hi Robert, just spoke to our Research team to ask them their advice.

    LDN is an unproven treatment and it has been investigated by ALSUntangled. They reviewed all available evidence for its use in MND. And concluded that they do not condone the use of LDN as it could have potentially harmful effects. http://informahealthcare.com/doi/pdf...68.2010.544386

    It may also be worth noting that LDN is not a proven treatment for MS as stated on the LDN website.

    The MS Society say that ‘LDN is not licensed for the treatment of MS in the UK. The MS Society supports an evidence-based approach to research and as such does not recommend that people take unproven treatments outside of a properly regulated clinical trial.’ http://www.mssociety.org.uk/ms-news-...f-research/ldn

    Hope this helps

  5. #5
    Forum Member Robert's Avatar
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    Thanks for your comments Claire,but all us sufferers do is get worse and die waiting for someone to find a cure. We have gone over this in the past and it will not happen,there's too much money to be made by not finding a cure,just look at Rilutek.If they think they're on the right track with Rilutek why hasn't it been improved.?

    Regards Bob
    We are the Champions my friends,we'll go on fighting till the end.

  6. #6
    Forum Member pete's Avatar
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    I Bob ,

    just never fails to amaze me how many times we get hear the same scripted replies, nothing is proven and it may be harmful, ??? What's that mean , kill us , MND is doing that with no help at all, Just wondering if the Researcher had the same limits we have ,maybe that would be an incentive , Christ they have only known about this disease for a hundred or so years, and still report the same rubbish, that nothing's been found to effective, Well the cancer guys have made giant steps thank god ,so why is our condition proving so difficult , as you say Bob time is nothing when you have lots of it to look forward too. Sadly we are not in that position, No reflection on Claire, but expect an equally numbing reply to this ,another carefully written disclaimer .
    Pete
    All I need is a miracle

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    Forum Member john's Avatar
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    Hi Bob and Pete,

    You will always get warnings from the establishment. Just covering there backsides which has got to be expected. Why anyone feels a need to warn you that doing something you might die knowing that doing nothing you will die is a real mystery.

    Have you seen the results reported by sceptic on alstdi re the lazarus pill? It appears you can contact a GP in South africa who will give advice.
    The pill is essentially a sleeping pill which Graham reported on here put him to sleep but sceptic is reporting a number of improvements after 12 days use.
    Here is a link. The post( last one) yesterday is the one to read for real experience. http://www.als.net/forum/yaf_postsm3...ll.aspx#356606
    With a name like sceptic I don't imagine any of it is made up. Seems to work on all his bulbar symptoms which must be of interest to you Pete. Apologies to your missus if it gives you your voice back.

    John

    john

  8. #8
    Forum Member pete's Avatar
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    Hi John,

    Did you enjoy the holiday ,hope so, and that is one long post, I will read it later on, but I have to say the swallowing and just general things have remained the same ,and now tho coughing has been reduced, largely due to the new registrar I saw ,he told me forget taking the ramipril tablets I had been taking for about three years, I had not realised until he suggested it but that was pretty much the same duration I have had coughing issues, glad to say that's 80 per cent improved over the week since I stopped taking them ,so will have to wait and see, if it is a long term one.

    Best wishes

    Pete

    Ps. John couldn't get a word in then so stand no chance now do I ?.
    Last edited by pete; 3rd November 2012 at 11:55.
    All I need is a miracle

  9. #9
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    Robert
    I have had a reasonable amount of experience with LDN and MS. I cannot help you with the decision as to if you should try it although sitting in your seat I cannot see what you have to loose.
    There is now an All Party Parliamentary Group set up to make it more widely available on the NHS the next meeting of which is on Tuesday http://www.ldnnow.co.uk/42801.html
    What I can do however is tell you how you can get it for yourself if that is what you wish to do.
    I have a lot more information about what is going on locally which I do not wish to put on a public forum but will share with you if you email me privately.
    I am not a doctor and repeat I have no experience of using LDN for MD so even privately I have nothing to share to help you with the decision as to if you should try it.

  10. #10
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    david603
    I am intrested in ldn, could you email localised info also please?

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