Well they do. Not all drugs are under trials specific for dmd, we do have to help our selfs some time.
Darren
My SPMS symptoms improved greatly when l started taking ldn.Six years ago. So did my outlook on life and general well-being. l have never been offered dmd’s. And it was only through joining this site and learning about it from other pwms that l decided to try it. Since starting it l have not ‘progressed’ - in fact l am much better then l was before. l have had ms for 31yrs.And l wished l had known about ldn a long time ago. l did once - due to lap-top failure - run out of ldn because l could not contact emed for repeat prescriptions. Within a week - l was feeling pretty rotten - legs stiffer- brainfog returning - quite frightening. But it did prove to me - and my family - how much better l am on ldn. l use to suffer with trigemynal neuralgia - the pain so bad l felt l could ‘shoot myself’ to put myself out of the misery of it. Once on ldn it stopped.
So for me Darren - you are right - it does modify my disease. And l hope folk who are on dmd’s feel the same - but of course l cannot comment as l do not take them. Anymore then folk who do not take ldn - should make comments about it.
When l read some of vitriolic replies from some on this site - l can only guess they do not take ldn. lf they did they would be much happier and full of the ‘feel good factor’.
Enjoy your weekend everyone
F
Darren - what are you writing about - what doctor?
I used to take LDN and if you read through my replies here on this thread, you’ll see that I reckon that if you are SPMS or PPMS then it should be available to anyone on the NHS.
It doesn’t/didn’t stop a terrible relapse and later, I got the best of both worlds, great results from beta-interferon and nice endorphins and better bladder control from LDN. Unfortunately, it doesn’t work anymore and lots of people have had this same problem.
As for vitriol. Let’s not go there. No one is angry, except that Darren is looking at this issue from a new viewpoint, whereas lots of us here have been arguing this for 4 years or more.
My problem with LDN - even from when I was taking it on its own, is that unrealistic, crazy claims for how it worked, were often written on EL but this is going back 5 years.
Now, at least it’s viewed realistically and more is known of how it works.
It’s almost as though everyone is arguing from a fixed point.
Thanks to this board, we know how to obtain LDN and learn how much to take and what it can do.
At this moment it isn’t a DMD. The woman in the Mail article has PPMS. Had David not tried to wind people up with the title - then it would have been interesting and a good part of the LDN awareness, yet here we are yet again, wound up by David603. Time to stop.
Some doctor named Rath that soemone used in their post that someone else doesn’t like. So i have no idea what doctor people are talking about.
The title of this topic is fine, a discussion about people using ldn as a dmd, which does happen. But its hard to talk outside the normal guidelines on here, without people arguing over it.
Darren
It’s not the subject matter, but rather the person who posted it.
If Whammel posts about LDN, then no one will criticise - he has PPMS and so does the lady in the Mail article. He posts in a sensible non-inflammatory way and doesn’t get on anyone’s t*ts about it.
Lots of people really do have open minds, but it’s best not to confuse academic/objective discussion with feelings. We can discuss stuff.
Look, thanks to advice and challenges on this board, I did 6 months of a raw food diet, that changed my life. I don’t shout about it as it’s difficult to do and the only truth about MS is that something will always work for someone.
I took LDN and Rebif thanks to advice from people here. I took LDN alone on advice from people here and had a terrible relapse. Felt great just before it though.
I follow a Paleolithic diet and this helps me and my arthritis and take vitamin D3 - all thanks to posts on this board.
Yes, there can be contentious discussion. But don’t let that put you off trying something. You never know, that something may work. Keeping an open mind is a good thing. But - read a lot. The blog Science based medicine is excellent, the Barts blog about MS and research and treatments is fantastic. Be sceptical as well as open-minded.
There are historical reasons why people get upset at the very sight of David603s name. He had caused a lot of stress over the last 4 years. He wraps total rubbishy ideas up in a scientific-sounding jargon and posts links that mean nothing and made assumptions about the people here that were unfair and untrue.
There is always something, a treatment, food, drug, idea, procedure that will work for someone. That’s the total crappiness of MS for you.
I have not been here for long, or even had ms for that long. But what i have seen in my forum travels is some people saying they use ldn as a dmd. I dont know the science of ldn or how it would work as a dmd. But i know it can be used to “regulate” the immune system. How that helps ms i don’t know fully.
I really thought this would be a great thread but it seems people are using it for their own agenda. Which seems to be a personal dispute between them for what ever reason.
But i think im starting to see why only one type of ms has its own forum.
Darren
Darren, the term DMD or DMT is a medical term referring to approved disease modifying drugs. People may choose to use LDN like a DMD in the hope or belief that it helps their MS, but it does not change the fact that it is NOT a DMD.
Calling it one gives it more credence than it deserves. There is no proper evidence that it does anything for MS and the claims that it beneficially modulates the immune system are based more on speculation than on research. Until it is properly trialled, found to be effective in modifying the course of MS and becomes acknowledged as such by the medical profession / approving bodies, it cannot be called a DMD by anyone with any scruples.
Putting on a football strip does not turn someone into a Premier League footballer. Only proven skill gets you there.
Rather more laterally, asking a congregation of churchgoers if God exists does not prove that He does.
Why all the arguing if you agree with me. I said its not a dmd just used as one by a few. Why fly off the handle over it. I dont see why everyone is so angry over ldn chat. I just wanted to see what people think not for people to have a go.
The title of the thread is “ldn (an un-licensed dmd?)” I think the “?” is the important bit. I have no idea what people’s problem is with the original poster but why the hostility towards me?
Darren
Darren,
I think the problem is that even claiming something is used as a DMD is controversial, and possibly misleading.
I’m doing pretty well on gin and chocolate (not exclusively those, of course). Now I don’t happen to link my recent lack of relapses with consumption of those things.
But if I DID, and started saying: “I’ve found things are working out really well for me on gin and chocolate - I take them as a DMD!”, would that be fair comment?
Would it be responsible of others to report: “Tina’s using gin and chocolate as a DMD, and she says she’s doing really great, so you can’t argue with that!”?
Tina
You just did i think. Its a true fact people do, i don’t i use avonex. Just wanted to see what people think about it but again its turned in to personal attacks for what ever reason.
Darren
Darren
I do not think you should take anything personally. There are a number of people on this board who wish to believe medicine is entirely evidence based and therefore object to anyone posting anything that even suggests anything to the contrary and that’s all it is. There are plenty of indication that western medicine is much more about money that science.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1369125/
The problem with any alternative solution is that the objection is that it has not been through clinical trials to licencing standards, it is not really just about LDN you will find the same hostility to things like HBO, treatment for CCSVI and a host of other things.
If you look at the licenced treatments for MS then even there not all experts believe that they have been submitted to valid testing anyway.
http://multiple-sclerosis-research.blogspot.co.uk/2012/03/guest-post-prof-george-ebers.html
Possibly even more significant than that discussion however is the cost of licenced treatments is such that in the UK that the vast majority of people with a diagnosis of MS have no access to them anyway. This seems to be becoming even more true with the newer even more expensive series of licenced MS drugs.
This means that the vast majority of people with a diagnosis of MS in the UK either do nothing or try things like LDN.
My personal opinion is that unlicensed DMD is a perfectly valid description for LDN because MS is a disease and the available evidence suggests LDN modifies it in some people and naltrexone is a drug. The debate to me therefore is not about DMD being a medical term but if the evidence for LDN is sufficient to suggest it is a DMD. Then you are right back to the discussion of if licencing trials are the only way to prove it. I do not think they are but some disagree with that and so far as I am concerned we just need to disagree on that point and move on without animosity.
Hello David,
I think the reason why i have been looking into other treatments is that the 4 dmd’s (i’m on avonex) only delay progression of my ms. Frustration with the conventional treatments left me with no choice but to look at other meds.
I can understand why some wouldn’t trust a drug that has not been tested for use a dmd, but from people’s experiance i have heard enough to give it thought.
I have a neuro app next month and will chat with him. He is the lead neuro on a new ms drug trail at the mo (not sure what drug). Im hoping he will be open minded or even have experiance with ldn to help.
I can see the lack of trials on certain meds, especially in ms (maybe because i have ms) and ldn. I can see money being the focal point for it.
The neuro did say my last mri would also check if CCSVI would be helpful for me, but am waiting for the write up on that. Mind you he may have said that because i ask too many questions
Thanks and goodluck
Darren
I disagree with a lot of that last post David, as I’m sure you know, but I’ll jump straight to the key thing that you have yet to elucidate despite being repeatedly asked:
Please tell us how else they might properly be shown to be effective? Please explain how NICE can manage its budget without considering data demonstrating the efficacy of drugs? Please explain… Actually, why not just address the 60 questions that you promised to answer, but didn’t, on the thread that you yourself started some time ago? I’ve been waiting a long time now.
Incidentally, Frances, if only people who are on a drug have the right to comment on it, where does that leave neurologists, researchers, academics, people who have tried it, GPs, etc? Never mind David603?!
Hello K,
I did ask gp but he said he only could prescribe on neuro’s say. when i see the neuro next month hopefully it will get the ball rolling. Don’t want to pay for private perscription because i have put enough money into the nhs they could atleast give me drugs that could help.
When i do get ldn and have been on them for awhile i will post how it is effecting me.
Thanks
Darren
Well Darren, the e-med system isn’t too expensive.
Don’t expect your neuro to know much about LDN. They have limited time and can only really work from the formulary (prescribing lists).
When I went on a raw food diet for 6 months, it was because I had been very ill for a long time. I was still on Rebif, but had been under intense emotional pressure at home.
The diet stopped the relapse and gave me massive amounts of energy. My neuro had been about to put me on Modafinal, but he was amazed by my improvements, both physically and cognitively.
Neuros are limited by what they can do. This is why it’s good to try things, keep an open mind and pay attention to research and sceptical blogs as well. You’ll find that what works, won’t be criticised.
The reason I started Rebif in 2000, was that I needed to try something to stop the relapses. I got lucky and it worked. There were no guarantees, just the hope that it may slow down the relapse rate.
It meant that I could plan and not become physically dependent on my family. So far, so good - but this has been hard work, a strict diet and exercise and a move to another country.
You can never tell with MS, what works for one person, won’t for another. It makes it a very complicated disease to treat and to live with. All you can do is read people’s accounts and if something resonates, give it a try. LDN was very good for 3 years, but doesn’t work now, more’s the pity. It may work really well for you for longer.
NOTE FROM MODERATOR: When it comes to medication it is necessary to be very careful. As lay people we have no knowledge of possible reactions or side effects, some of which may be dangerous.
Please always check with your doctor or neurologist before adding new medications to your regime - especially if you are on one of the interferons.
Remember also that a mixture of medication that is suitable for one person may not be suitable for you.
I know the neuro may not want to talk about ldn, but between him and the ms nurse one of them should. But i do need the blessing of the neuro for my gp to prescribe it. Iam hoping it will help with my symptoms, because i take no other drugs other than avonex to help ms. Thats going to be my argument for it, it may work i hope.
Darren