Interesting debate again it seems that those that have tried LDN and found it seemed to modify their disease progress feel that the term DMD may be applied to it others who have not tried it or found it did not do that for them do not.
Again some people seems to be saying that unless something is proved in clinical trials then it cannot be true but that in this case means disregarding the opinions of many with MS and I am surprised anyone with an interest in MS would do that.
We also remember history in the fact that chemical industry interest were a significant influence behind the last war and some believe that the Nuremberg trials only partially dealt with that issue.
Well, that is a neat way of distorting the facts!
Unless something is proved in clinical trials then it cannot be held that it has been shown to work in the course of scientific trials. Anyone with an interest in MS would be interested in treatments that have been shown to work.
As for trying to drag the Nuremberg Trials into this debate …
The URL given links to the website of a Dr Mattias Rath, who attacks the larger pharmaceutical companies as a way of promoting his own “natural” remedies.
The Wikipedia article on Dr Rath contains this:
The head of Médecins Sans Frontières said “This guy is killing people by luring them with unrecognised treatment without any scientific evidence”
So, I know who I would trust to be objective, and it is not Dr Rath.
A few lessons to be learnt, wiki is not really to be trusted. So many fake post’s only use it as a ref. But always look up on treatments you are thinking of trying, and remember you don’t have to learn medicine to be called a doc.
You may be aware of :
A website looking into using ldn as a treatment for ms, some interesting write ups and tips.
We’ve been arguing about this with varying degrees of anger/disbelief/incredulity/ resignation ever since 2009. (Stuff happened, people posted, huge arguments followed, posters were banned and it’s best not to go there).
I’ve also been on LDN. It was a great help with symptoms, but like Chocorange (Ellie) it didn’t prevent a terrible relapse. Yes, I think it’s a very good thing to have an open mind. There’s nothing to stop you trying LDN along with beta interferon or Copaxone and there’s a few people on Tysabri who have stuck with their LDN. I took Rebif and LDN for 2 years and then all my lovely LDN benefits just disappeared. It’s sad, as I felt very good whilst taking LDN.
Comparing people’s experience of PPMS as opposed to RRMS doesn’t work. Yes, it’s still MS, but that’s where the similarities end, in terms of treatments to modify the course of the disease.
LDN isn’t a DMD. Not one person who has RRMS who has replied here has said so - but maybe, for PPMS it works in a different way. I think it does. I’m not a doctor, but I do know people with PPMS and SPMS who swear by LDN and I’m very happy for them. I also agree that for those people, it should be available on the NHS.
LDN isn’t recognised as a treatment in all countries. It doesn’t exist in Spain, where I live. Weird, but true. It’s cheaper here to make my own and buy Naltrexone powder without a prescription. It is an odd situation, that people with MS, have to find a pharmacy where either drug addicts buy Naltrexone, or one where the pharmacist knows you well.
i decided to opt for ldn and did so with my eyes wide open…i believe that we have to do whats right for us. the one thing i detest i sneaky emotional blackmail (current neuro) such as-i dont want u to in a wheelchair in 10 years and regretting not to take dmds (wasnt offered them in first place despite 11 relapses cos neuro at that time said it was all in my head!) i DONT REGRET my decision cos why would i? surely any decision is what u thought was right at the time and u learn to deal with consequences of that decision. i have learnt not to feel guilty re any decision cos that just eats u up in a very negative way. be that decision be about my ms,my diet,my exercise,the colour of my loo,anything! theres always choice-its others that convince you that theres not…
ellie x (a physically exhausted and broken one-but my mind is strong!)
Who was arguing? Do you mean the doctor part? I dont know if dr rath is a doctor or anyone else. A forum for people with a medical condition that bans people who warn about fake doctors, scary.
Er, Darren, this has nothing to do with Dr Rath. If you want I can fill you in on the gory details of the arguments over the last few years on this board.
All I’m going to write now, is that the board got stirred up by a person who claimed that LDN cured MS. That was the start of it and it was nothing to do with doctors, but everything to do with promoting a member of the Yahoo LDN group. They decided that this would be a great place for them to promote this person and for some strange reason, David 603 joined at the same time. He admitted later that he had enjoyed upsetting people on this board. He apologised later, but for some of us, it’s a sore point.
Nothing to do with Doctors or anything else. I like the LDN Trust and I was/am an advocate and did a long interview with Linda Elsegood about how I came to take LDN and how to obtain it here.
Ellie, I wasn’t criticising you , but agreeing with your earlier post, about how LDN had worked for a while and dampened down your MS, but didn’t stop you having a relapse. Nothing to do with choices, or anything. I’m really sorry you had that awful relapse - I had one too and it took a long time to recover.
Just because one person does not find LDN acts as a DMD it does not mean the others that find it does are wrong. Here is another article this tome written by a doctor experienced in LDN that suggests that LDN does modify the course of the disease in some people.
The part about the Milan trial and PPMS is fine. No one is suggesting that LDN doesn’t work at all. It’s not the same as a DMD that is designed to slow down or stop the relapse rate. In non-progressive MS, you want to stop relapses and yes, some MS doesn’t progress or move into SPMS.
It still doesn’t make it into a DMD. How about at Progression Modifying Drug instead?
The immune stuff that Dr Gluck was writing about could be true and it could be rubbish. No one knows. I’m absolutely certain that my immune system isn’t weakened. That’s why the newer ***zumab type drugs work on aggressive MS. They are immune suppressants.
I don’t know why we bother to go down these same old routes. At least you’ve stopped making ridiculous claims for LDN. I suppose that’s an improvement.
The term DMD is restricted to drugs that are approved for treatment of MS. That’s it. Nothing else. If LDN is ever properly trialled and becomes an approved disease modifying treatment for MS, then it too will be a DMD, but until then, it is not. With regard to the term doctor, only people who have completed a doctorate have actually earned the title. People with medical and dental degrees get the honorary title doctor. Unless they do a PhD, they are not proper doctors. It takes a very long time and a lot of hard, intellectually-demanding work to get a doctorate. The skills learned along the way vary somewhat depending on the subject studied, but I would bet that my PhD in neuroscience taught me infinitely more about research, science, neurology, MRI and MS than any medical degree. So can we please quit with the doctor crap and stick to content rather than who said what and what their title is? The ldntrust website has a load of info on it; compiled by the people who sell and make a lot of money from LDN. As for introducing Nuremberg - I’m disgusted. Get a grip. The facts: LDN is not a DMD; some people find LDN helps them; some people find that LDN does not help them; LDN does not stop relapses. Certain individuals can post irrelevant links all they like; it won’t change the truth.
An interesting use of the (root)word “trust” - which has, like others, more than one meaning in English.
Ten or twelve years ago I would have said that Wikipedia could not be relied upon - and went further. Students taught by me were informed that quotes from Wikipedia would not be accepted unless supported by other independent references.
Wikipedia have now tightened up on pages without proper references (they use the term “Citations”) and will even head an article with a warning that the content needs citations.
Thus, the Wikipedia article on Dr Rust contains 73 citations (which can be independently verified) and is therefore likely to be reliable as a source of information.
“dr rath” is almost certainly a “dr” - what is open to debate is whether he is a Doctor. The website run by his own organisation is a touch vague on this, but he has allegedly completed a basic medical qualification in Germany. This would enable him to practice medicine using the title of Artz (or artz) - but not to call himself Doctor. Since he is also alleged to have subsequently engaged in practice and researc, he is also likely to have done the work, produced a thesis, and passed an oral examination. This would get him a qualification as “dr. med.” which would carry the right to use the title of Doctor as well as Artz. I did refer to the distinction in the thread: http://www.mssociety.org.uk/forum/everyday-living/atos-dlahome-visit-saturday-help-please
The question is not about the qualification of Dr Rath, it is rather about whether his activities are suitable to be used as a reference to support the contention that was used to start this thread.
I am not aware (but open to correction) of anyone who has been banned from this forum for warning about “fake doctors”.
Certainly, this forum (like others) does get its share of people shilling or touting for those who could be described as “quacks”. If, Darren, you had been a member of this forum for some time (either the present one, or its predeccssor) you would have noted that warning posted here are usually done with the intention of advising the newer members not to be misled by some of the extreme claims made for certain treatments. Just read the post from lapreguiceira above.
Wiki is still full of false articles, the best i have seen being Amile Hesky signed for a record fee to Barca.
The Dr system in the Uk is a lil crazy, we should have a better way to tell the diff between a medical doctor and a non medical doc.
Ldn is being used by some as a dmd. Its a shame we rubbish ideas outside the norm on here. Maybe because we do get post,s about false “cures”. But as i always say if it works for someone its always worth a look.
Just out of interest, I looked up Amile Hesky. The Wikipedia article had no mention of “Barca” - I assume you meant Barcelona) but I did find where some so-called fan was running the story on his U-Tube based blog.
The Wikipedia article was - as I would now expect - properly referenced.
The point remains as to whether the activities ofDr Rathwere appropriate to be used as a reference to support the contention that was used to start this thread.
The reference to Dr Rath was raised by you not me, it is true that the information linked to is a Dr Rath site but the question is not Dr Rath and his medical views it is the issue of what is still driving medicine science or the money behind the science.
Dr Wrath has been instrumental in bringing much information to public light concerning the Nuremberg trials and that is accepted by your favoured source Wikipedia.
The contention being made by several is that the industrial complex behind two world wars moved to a political solution, the Brussels EU to bring about a corporate controlled world.
The connection therefore with LDN is that it is the lack of patent protection for naltrexone that has to date been a factor in there being no motive to test it formally to licencing standards.
You have made me aware that this will possibly change but so far something discovered in the early 1980’s is still not generally available to people with MS or indeed anything else due to so called lack of evidence. This means the views of 10’s of thousands of people with MS who find it useful often as a DMD are being ignored hence some are trying to do something about that.
As for Dr Rath and cancer treatment well may be he is right maybe he is not, anyone who goes against that money spinner tends to be rubbished regardless of the merits or lack of for the treatments they offer.
All this also needs to be taken in the context that off label prescribing in medicine is very much the norm anyway so why the big problem getting the NHS to prescribe LDN if that is what people with MS want?
To publish something (like a URL, for example) and then try to weasel out from any responsibility for the content of that URL is the action of a troll.
It is clear from the last post by david603 that he believes (or, worse, pretends to believe) that continual quotes from pages put up by the Dr Rath Foundation will support his argument. When, however, he says:
knowing that the application of LDN had been patented by the discoverer of that application, one really has to wonder about his motivation.
Similarly, what is one to make about his penultimate sentence? To make the claim (or is he suggesting that it is Dr Rath who makes the claim, and that he disclaims all responsibility for it) can only be viewed as hilarious. Hilarious, because the major drug company who have bought the LDN patents from Dr Bihari are, in fact, one of the world’s major manufacturers of oncology medication (or, for the non-scientific, anti-cancer drugs).
It must be terrible to find that, after some years of blaming “big pharma” for LDN not being more readily available that it is going to be “big pharma” who may make it readily available. Food for thought …?