Forum

LDN

Seems to me the tired old line is evidence based medicine again.

I say again the question is how to adjust the dose of LDN, why are so many people trying to divert the question on to other issues?

I am very happy to discuss any of the subjects but do feel those who have no interest in actually assisting with answering the original question should raise separate topics threads.

It seems to me that the whole debate started when David603 wrote:

Not everyone gets symptom improvement the main advantage is relapse/ progress reduction

perhaps he should take his own advice and keep to answering the original question.

Not true, that is directly related to the original question in that it was not explained why the questioner was asking the question. Some people do not get symptom improvement and therefore assume LDN is not working for them, this may be an incorrect assumption.

This is not proven in clinical trials, if that maters to you then do not take LDN.

However even in the link I posted clearly stated that fact so why keep attacking a statement on the ‘Evidence based Medicine’ argument. Take that discussion elsewhere is what I am suggesting.

For those who missed the link here it is again.

http://www.ncbi.nlm.nih.gov/pubmed/15694688

…and so we complete the circle, time to move on.

While I applaud the sentiment of sticking purely to the question, some of us will never stand by and allow someone to get away with absolutely irresponsible posting. The old site’s system of allowing side conversations meant that these arguments did not interfere with the main thread, however, we no longer have that facility.

If I posted on here that praying to the MS God (all hail Her) would cure MS, or that eating only raw carrots would cure MS, or that I had devised a special diet that was 100% effective and all you had to do was buy my book, or that refusing all meds and spending all day every day meditating and asking for forgiveness because only evil people who take meds get MS, or any other completely wild statements claiming more than they actually do - would you think that’s perfectly reasonable? Would you still think that if a single person believed me, refused meds, had a horrific relapse and became terribly disabled? Would you stay quiet?

What if the claims I made sounded perfectly reasonable? But you knew otherwise. Would you still stay quiet?

I would not be able to live with myself if I stood by and said or did nothing if there was the slightest chance that I could sway someone from making a potentially terrible mistake.

Incidentally, I am not suggesting that using LDN or simply wanting to find out about the right dosage is a terrible mistake. I am saying that, because of unsubstantiated, wildly enthusiastic and false statements on this forum and elsewhere, certain people with very aggressive RRMS might be persuaded to refuse DMDs and take LDN on its own. That is something that I will not stand quietly by and watch - counterargument has to be aired too.

  • The long-term use of injectable DMDs is known. They went through many years of trials and have now been prescribed for more than a decade.

  • One person’s experience is anecdotal! Moreover, there is absolutely no way of knowing if your experience is placebo or coincidence as you have not compared yourself taking LDN to yourself not taking LDN. This is the reason that clinical trials are needed - so sufficient numbers can be put into groups and the groups compared.

  • I’m sorry that DMDs did not work for you, but that does not mean that they don’t work for others. Equally, LDN doesn’t work for everyone, but that doesn’t mean that it doesn’t work for others.

The people arguing against david603’s statements are not anti-LDN. We are anti bad advice.

If you are against bad advise then please be honest about DMD’s - most are not proven to slow disease progress and there are risks with the ones proven to reduce disease progression. Risks that many find unacceptable.

http://www.mssociety.org.uk/sites/default/files/Documents/Essentials/MS%20Essentials%2006%20Disease%20modifying%20drugs%200809-3%20-%20web.pdf

The other problem is most people diagnosed with MS are not offered them in the UK for a variety of reasons.

The evidence of reducing disease progress with LDN may be anecdotal but at least there is some evidence.

I say again however what has all this debate to do with the original question about how to adjust the dose of LDN?

Keep putting out statements that the evidence for LDN is only anecdotal when no one is saying there is sufficient evidence for LDN to be licensed may not be meant to be anti LDN but it sure looks that way to me. Other like myself may be drawing the same conclusion

The other point is the people who keep posting this sort of thing do not seem to answer the question about how to set the dose of LDN – the original question. Why post if you have nothing to say about a question.

Why not post a debate about evidence based medicine for those who are interested in debating that issue?

lf you have spms then there are no DMD’s or anything else to take. l do take ldn - and have for 3yrs - and l have had lots of benefits from it - and its now 30yrs since diagnosis. lt was the good people on this site who gave me the information and showed me how to obtain it. My GP, is all for it as she has seen how much better l am from taking it. People come on this board and ask for help - and if it is something that l have first hand knowledge of then l try to help. Most of the time l use the PM device to answer because l hate to see all the vitriolic responses that come from the same old -same old - l am in contact we many folk on this forum by the same method because they are also fed-up with the overheated debate. We have lost a lot of people off this forum because of this element.

l feel sorry for all the newbies who are nervous-frightened -wondering what is going to happen to them.

Get a grip - lf you can’t say something nice - then say nothing at all.

Can we extend this to if you can’t say something, which is true, then say nothing at all’

I too am concerned about newly diagnosed being given inaccurate and false information.

It is also a common inaccuracy that there are no DMDs for SP. Betaferon is used for both RR and SP.

Yes I am S/P and still am allowed to inject Betaferon. It certainly has helped my relapses which are few and mild compared with what they were. I make sure I have regular blood tests and do not smoke and drink very little. I eat a fairly good diet and try to stay stress free. I am however progressing and my legs have become considerably weaker in the last few months. When I am taken off of Betaferon I intend to look into LDN and would have tried to get it if DMDs were not offered. I think it’s true to say that everyone’s experiences are different and what ever works for one person isn’t necessarily good for someone else. My good friend (Sherbert) is grateful for the information she has received but she didn’t expect the level of argument that has gone on. Let’s hope that it does become available on the NHS but if it doesn’t there will be a good reason and those who want it will still be able to buy it.

Live and let live please.

Wendy

x

I’d be very scared if I was just diagnosed and I’d read Mhairi’s untrue and biased opinions. The good thing about this forum is the range of experiences and views. There are people who’ve been on beta-interferon since the mid-late 1990s. We’re still alive and haven’t got compromised immune systems. If a DMD works, then you won’t get ‘benefit’ from it. It won’t make you feel better and it can’t repair damage caused by illness, but what it could do is stop you from being constantly ill from relapse after relapse.

The not-so-good thing is that there are posters here with an agenda.

It’s unfair of David603 to keep on asserting that he’s somehow a LDN expert. This is ‘advice’ from someone who has at times made some very bogus ('tends to stop progression by 100%!) claims for LDN and who at the time he joined the boards, was convinced that this board was infested with drug firm representatives. I could leaf through my little black book of some of his finest quotes, but why bother?

MS is complex. It can respond really well to the clinically trialled drugs and also be horrendously resistant to any drug therapy - and that’s just RRMS. The one good thing that’s happened in the last 3 years, is the increase of knowledge of the action of LDN in RRMS and also beta-interferon - and that they aren’t opposites. They can be taken together and that the person with RRMS can benefit and yes, I’ve had a benefit and yes, I’m an advocate. I’m one of the very few people who know how to get LDN in Spain.

I like LDN. It makes me feel better. Yes, you can take beta-interferon and LDN together without bursting into flames or turning orange.

If we just stuck to things that we have personal experience of, then the board would be a nicer place. It would be nice if we could just have a week or so without claims for the efficaciousness of LDN as opposed to other drugs that David603 has no personal experience of. It’s all very well to list links, but as far as I remember, no researcher has ever asked me if Rebif has worked for me or not. It’s been a lifesaver.

I’m tired. I’m very tired of repeating over and over that LDN is not a better drug for RRMS than Tysabri or Campath or beta-interferon. It’s like hitting a brick wall. MS is a terrifying disease. Why on earth should I have to keep countering claims for LDN that no one else who takes it make? I’m not the only one who is scared and I’m not the only one who has come to the end of their patience.

If I was diagnosed with PPMS or SPMS and my neurologist told me that there was no drug on offer to slow things down, then I’d follow the sensible advice here and go and get LDN and try everything I can. Diet, HBOT - bee stings, snake venom, Wheldon Protocol - anything.

I know, it’s stupid to reply to you David. You don’t take anyone else’s opinions seriously or have respect for people who are just trying to live with their MS. So that’s it.

Katrine

As you know I have never taken DMD’s BUT if I thought for one second that I would turn ORANGE if took one along with my LDN then count me in!!!

Ellie xxx (admits to being obsessed by anything orange! Has orange bike helmet, orange DM’s, orange leather jacket.loads of orange jewellery and YES even orange underwear!)

Thanks for making me smile-been at hosp most of the day-am exhausted and crabbit and looking forward to kids going to bed!!!)

Lapreguiceira

In what way is your tirade relevant to the question asked?

The parma shill debate was not started by me.

Here is a link to the 2009 LDN conference where the person who started the parma shill debated on this board.

http://glasgowldn2009.com/2009/04/ldn-conference-presentation-video5/

I am flattered that what I say is so important that you keep a book but please do try to be accurate with the records.

You were clearly talking about your own experience and I certainly didn’t notice any wild sensational claims. I think you just got caught up in some friendly fire, that’s all.

Glad to hear you have found something that helps and hope you continue to use the site.

You did give your personal opinion and experience of DMDs and LDN, and there is nothing wrong or scarey about it. So don’t you go anywhere, cos we need each other.

xxjo

Did someone mention ham?

No, that should be pharma shills.

It was a debate started be one of the speakers at the 2009 LDN Medical conference.

The point I was making is I did not make the statements I was accused of making.

Some people object to me saying there is anecdotal evidence the LDN can stop or reduce both relapses and disease progress. I am sure why they object since it is a true statement first said publicaly at the 2005 LDN medical conference in the US, again not by me.

I think the next thing will be to accuse me of saying Elvis is still alive and living on the moon.

You are not talking about me are you David?

I have never objected to you saying that there is anecdotal evidence that LDN can stop relapses and disease progress what I have objected to you saying that LDN stops all relapses and disease progression. There is a difference between the two statements.

I am not sure what the ethical difference is between being the source of statements and repeating them, especially on a public forum, but that’s another debate which I haven’t got time for this morning.

I think the next thing will be to accuse me of saying Elvis is still alive and living on the moon. David, I thought Elvis worked “down the chip shop”! In answer to the original question, I’m sorry I don’t know, when I tried it I could barely manage 1ml. Cheryl:)