Certainly some people think that LDN has helped them.
I disagree with Campion in that it is not rare for people to say that LDN has not helped them. There have been quite a few on the boards and I certainly know some who regret taking it.
Some people may not be so depressed and vehement if they were on LDN, however my own opinion is that people who are not on LDN might take a more measured and considered approach to their health management and not believe everything they read on the Internet.
However if anyone wants to try it then it might be worth it if you think you have nothing to lose, but please do so with your eyes open.
My GP mentioned it to me (was very surprised), and said he’d happily prescribe it for me so I got it through him. If your consultant doesn’t work maybe your GP is a route to follow?
My GP mentioned it to me (was very surprised), and said he’d happily prescribe it for me so I got it through him. If your consultant doesn’t work maybe your GP is a route to follow?
What do gp’s look for in people who they prescribe ldn for? Type of ms, how long they have had ms or serverity of the ms symptoms? Its very interesting that most “reviews” of ldn i have seen say its the best meds they have had. Most of the anti ldn “reviews” seem to be because of the sideeffects out weigh the good.
i have been taking ldn via emed route for almost 6 years. i have found a different ‘challenge’. my practise i run by 4 gps. 3 have agreed to prescribe it for me but until the 4th agrees too they wont. i believe my case was used 3/4 years ago at a gp training seminar and trainees were asked if they would prescribe for me or not. answer? undecided-some for,some not just as i expected. i am a reasonable soul and can see all 3 sides (theres never just 2 to a discussion/debate!)
ellie x (wearing her rose coloured glasses as usual-thats prob a little to do with effects of ldn and alot to keeping reality in perspective!)
Ty all for your replies, whether they are for or against LDN.
I am really concerned now though, because I have raised the LDN question again; that everybody will start arguing over it again. I really didn’t want this to turn into a ‘heated’ debate but just simple wanted to ask a question and hopefully obtain an answer to it.
So please do not turn this into an argument like last time where ppl like myself feel anxious about asking questions on this forum. I don’t mean this offensively either.
One of the things that I find comforting about this place is that if i need different points of view on a subject re: MS, I can always post on here to try and find a solution.
So please ppl, accept like i do; that there are many things ppl are for and against and everyone has a right to say their opinion. Long as its not nasty to other ppl of course.
Please don’t stop posting about this subject : LDN as I for one am finding ALL posts regarding it very helpful.
just felt i had to say this and no offence intended to anyone,
Ldn is a hot topic, it has changed some ms’ers lifes for the better. I’m new-ish to ms so finding all the ldn talk great. Seems to split the forum but most are for it, it seems. I will have a chat with my gp but they seem to shy away from ms, so not sure they will be happy with ldn. I do get the feeling i have gone above them now i have a neuro. Maybe i’m parranoid…
To be honest, ldn hasn’t been hot for about ten years and is now merely lukewarm. Most sensible people acknowledge that it can help some people, but that’s about as far as it goes until we get a full medical trial, which is fair enough.
Your GP can prescribe ldn, or if that route fails, then the drug is easily available privately. There is no conspiracy, so no need for paranoia.
Can someone link me to a site that has both positive and negative feedback of LDN
I have only just heard about it by coming here and want to know more before I go making a decision
I try to be open-minded about LDN, to the extent that I have told various people who have been diagnosed with PPMS and SPMS about it - nothing ventured and all that. However, of those people who have subsequently tried it, none have stayed on it because they all had bad side effects that were not improved by changing the dose and/or persevering. Hardly something that has boosted my confidence in it
I accept that plenty of people try it and find varying degrees of benefit, but it is NOT rare for LDN to be of no benefit or even to make things worse. It is a drug and we all react differently to drugs. To believe that a single drug can work for umpteen different conditions with only rare null or bad effects is naive and even potentially dangerous.
To those of you who are remembering my previous arguments about LDN with certain people on here, I would like to say two things. 1) I argue against unreasonable and unfounded claims and comments that might mislead or endanger, not against LDN per se. 2) Taking or not taking LDN has no bearing on that and I’m offended by the ridiculous suggestion that I argue against bad science because I am not taking a drug that boosts endorphin levels! (In fact, the suggestion does rather beg the question, “Do users have an unrealistic and drug-fuelled view of how well said drug works?”)
I note you are against people making unreasonable claims and I agree with you on that point.
You have made two claims below:-
‘’However, of those people who have subsequently tried it, none have stayed on it because they all had bad side effects that were not improved by changing the dose and/or persevering’’
‘’I accept that plenty of people try it and find varying degrees of benefit, but it is NOT rare for LDN to be of no benefit or even to make things worse’’
Before commenting can you please give me your evidence source for these two comments.
Just thought i’d give my experience, and I know everyone reacts differently to drugs so may have a very different reaction to me. My GP told me about LDN (although I already knew of it via this website), and said that if I wanted to give it a try he’d be willing to prescribe it. I had a think and then decided i’d give it a try. For ME personally (and I stress I am only talking about me), it has changed my life. Emotionally I feel back to the old ‘me’ and physically it has helped to stabilise things. I only make these claims because there was nothing else I was taking or doing at the time that these things could be attributed to.
I’m not saying it will work for everyone, just relaying what I think it did for me. I didn’t have any side effects.
Just thought i’d give my experience, and I know everyone reacts differently to drugs so may have a very different reaction to me. My GP told me about LDN (although I already knew of it via this website), and said that if I wanted to give it a try he’d be willing to prescribe it. I had a think and then decided i’d give it a try. For ME personally (and I stress I am only talking about me), it has changed my life. Emotionally I feel back to the old ‘me’ and physically it has helped to stabilise things. I only make these claims because there was nothing else I was taking or doing at the time that these things could be attributed to.
I’m not saying it will work for everyone, just relaying what I think it did for me. I didn’t have any side effects.
Naomi x
[/quote Naomi, Thank you for posting your personal experience of using ~LDN. l think your story will add to others personal experience to help those who are thinking about trying LDN - or those who have not heard of it. My experience is just the same as yours apart from my GP - although all for me taking it was not in the position to prescribe it. l think now after 3yrs of benefitting from it - my GP might just have a change of mind. l shall be seeing a neuro this week and l shall bring the subject up - seeing as he is all for me having Sativex - another ‘controversial med’.
Apart from a few days of vivid dreams - when l first started taking ldn - l have had no adverse effects just good ones.
l have always said - and l shall say it again. LDN - we know it is not a cure - but it certainly helps you cope better with MS symptoms. lt gives you a ‘feel good factor’ - making life easier by boosting endorphin levels. lt remains in your ‘system’ for 4hours. You can not take opiate drugs with it - but you can take them in the morning and during the day as long as you do not take them at the same time as your LDN.
l have had spms for 30yrs - and have felt so much better this last 3yrs since taking LDN. l have certainly not ‘progressed’ - quite the opposite.
What took me so long? Ermmm i’m not sure, maybe partly that whenever I saw it mentioned on this site that there was a big debate and arguments over it so I shied away.
Other than that I think it was simply that I didn’t believe something so simple as a tablet would make much of a difference. Another reason was that I know people were/are having problems with being prescribed it etc, so imagine my surprise when my doc mentioned it to me!
I note you are against people making unreasonable claims and I agree with you on that point.
You have made two claims below:-
‘’However, of those people who have subsequently tried it, none have stayed on it because they all had bad side effects that were not improved by changing the dose and/or persevering’’
‘’I accept that plenty of people try it and find varying degrees of benefit, but it is NOT rare for LDN to be of no benefit or even to make things worse’’
Before commenting can you please give me your evidence source for these two comments.
[/quote] I am not about to breach confidences and I am shocked that you would expect me to. Or are you calling me a liar?
