Forum

LDN

Hi I have been on LDN now for a while and take 4-5mg. I was wondering in there is a higher does one to go up to?

Thanks Sherbet

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The important thing with LDN is to set the dose correctly for you, it is definitely not more is better.

If you do not know how to do that then I suggest you listen to the medical conferences or read up the subject from one of the many web sites.

In essence you slowly increase the dose and back off if you start to get bad effects.

Falling that you could seek the advise of a doctor experienced in treating MS with LDN, which is unlikely to be your GP even if they prescribe it for you.

4.5Mg is generally the recommended dose providing that does not cause problems but some doctors are now experimenting with more than that in what you might call non responders to the standard dose regime.

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

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

And just when I was beginning to think you were starting to post responsibly…

There is no proof that LDN reduces relapses/progression.

If you posted this link to back up your claim then what it actually says is:

There is overwhelming anecdotal evidence, that in low doses naltrexone not only prevents relapses in MS but also reduces the progression of the disease.

The key words here are anecdotal evidence nor does the article say anything about main advantage.

To the original poster, I am sorry I have nothing helpful to say in response to your question.

As one of the lucky ones who has benefitted, with some symptom relief,no progression in my SPMS since taking LDN - l too was wondering if l could increase the dose. l did start on 3ml - for the last 3yrs l have been on 4.5ml.

l think l will follow David’s advice and look into it. Does anyone else take a higher dose?

Sherbert, Let us know if you do increase your dose?

Frances.

Tonto

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Please do not accuse me of irresponsible posting by post a link to Pub Med. If you think what they say is irresponsible please take it up with the US Government.

I think it is vital that people quote sources for what they say. It is then up to those reading to consider the source of the information. If you do not think Pub Med , the MS Society or any other link I publish to justify a post is a reliable then by all means disregard it.

Please however do not try to make decisions for others.

I am well aware that some here believe that clinical trials are the only way to determine anything, and when considering their own treatment that is of course their right but much of medicine is not evidence based in that sence.

Here for instance is a BMJ article on the subject.

http://clinicalevidence.bmj.com/ceweb/about/knowledge.jsp

If you think they are wrong take it up with them.

Sherbert and Frances

I understand that some folk are double dosing.

I had a quick look on LDN Research Trust website and it is mentioned. However,as with everything regarding LDN, its about finding the right dose for you.

Maybe would be worth giving Linda at the Trust a ring? (The number is on the site)

Ellie x (person with MS, been taking LDN for almost 5 years, has no interest in debating links, just wants to share info and let folk make their own decisions)

David, let me put this simply.

You are not posting irresponsibly when you post a link. You are posting irresponsibly when you make wild and unsubstantiated claims for LDN, particularly when they are not even in the link that you have posted.

Anyway I don’t think this ‘debate’ is helping the original poster at all. Bring back the side threads!

Apologies, Sherbet, this discussion is of no help to you but I couldn’t let this go unchallenged.

Incidentally I am not against LDN per se. I have no doubt that a lot of PwMS have experienced benefit from taking it. Though, I do know that it hasn’t been a resounding success for everybody that has taken it. What I have issue with, is the wild and unsubstantiated claims which are made for it by some people (some of whom do not have MS)

[quote=“chocorange”]

Sherbert and Frances

I understand that some folk are double dosing.

I had a quick look on LDN Research Trust website and it is mentioned. However,as with everything regarding LDN, its about finding the right dose for you.

Maybe would be worth giving Linda at the Trust a ring? (The number is on the site)

Ellie x (person with MS, been taking LDN for almost 5 years, has no interest in debating links, just wants to share info and let folk make their own decisions)

[/quote] Thanks Ellie for your reply - l’m with you - l only answer posts on subjects that l personally have experience of.

And after 30yrs of spms - l do know a fair bit - but still learning! l just wish l had known about LDN years ago.

And it is thanks to David and many others that l learnt about it 3yrs ago.

Cheers Ellie,

F.

Tonto

10’s of thousands of people benefit from LDN, I agree not everyone. You criticise me for saying it its main benefit is relapse/ progress reduction and presumably that is what you call an exaggerated claim. Why? the link demonstrates the type of evidence that supports this claim. Why do you feel the need to quote from the link, do you think everyone is incapable of opening links and reading what it says.

The reason I feel it is very important to point out that not everyone gets symptom improvement is that I am very my experienced of talking to people with MS who have tried LDN, most are delighted. However some have not even been aware how dose critical it can be to archive a result and stopped taking it because they did not get any better. When you ask them further of their experience they typically say that whilst they were on it their disease did not progress and after they stopped their disease progressed.

There have been some very significant benefits that people have reported whilst on LDN, there was one CBC documentary a few years ago where someone had made a miraculous recovery and was walking rather than being confined to a wheelchair. Now whilst I am sure we all think that is great to start LDN expecting that kind of miracle is almost certainly going to lead to disappointment.

If people start LDN with more modest expectations such as stopping or slowing relapse rates and disease progress and knowing to even achieve that they have to experiment with dosage then there will be less people disappointed. Since nothing works for everyone even then with such modest expectations some will still be disappointed. That however is true of licenced products as well, all of which also have their problems

Two points:

  1. stopping or slowing relapse rates and disease progression is in no way a modest expectation!

  2. at what time have you ever given the impression that people should have (properly) modest expectations of LDN? In the two years since joined this site I have seen you repeatedly say things like “stops all relapses”, “completely stops disease progress”, “stops relapses and disease progress” whilst continually denegrating the pharmacological industry and its clinically trialled drugs; indeed going so far as to suggest to some people with highly active / aggressive MS that LDN is a viable, even preferable, alternative to Tysabri. You also habitually ignore any posts from LDN users that disagree with your viewpoint. There was a bit of a relaxation of the claims when you started saying things like “has stopped my wife’s disease progress” and “many people find that it helps with their disease progress”, but it was relatively short-lived.

Karen

The anecdotal evidence which includes evidence given at the medical conferences supports the fact that LDN can and in many cases does stop or reduce both relapses and disease progress.

I appreciate from your previous posts you do not accept these medical opinions and when it comes to your treatment that is fine, however others have different views.

As for the pharmaceutical industry well I did not give evidence to the health committee report ‘The Influence of the Pharmaceutical Industry’ I do not run a single one of the multiple newsletters such as this one.

http://www4.dr-rath-foundation.org/THE_FOUNDATION/News/2012/pharmaceutical_business/index.htm

As for products like Tysabri then like every thing else it will not work for everybody.

However what I find most disturbing is why are we tuning a simple answer given by me about how to adjust LDN dose into yet another argument about things totally unrelated to the question?

The question nor my answer mentioned Tysabri, Views about the drug industry or anything else, so why is that being raised yet again?

Yawn

David,

I also had a miraculous recovery and was able to walk again after being in a wheelchair for 9 months. I have also had incredible bladder improvement where after 3 years of non-stop baldder leakage and needing to self cath, I have been bladder problem free for the last 3 months.

I am sooo happy to see the reduction in these symptoms. Another wonderful testimonial to LDN?

Aaaah, no. I have never taken LDN and none of my other meds have altered either. It is the natural history and vagaries of MS. Oh but it is summer here and I have been eating lots of nectarines; maybe THAT is it!

People need to be very cautious about the difference between causative events and correlated events. It can just be that people see improvements in their MS AND they happen to be taking LDN. This is why it is important that proper clinical trials are done into LDN and then we can put these endless debates to rest for once and for all. But at present there is only anecdotal evidence which is worth as much as my nectarine theory.

Belinda

Belinda

All very well but we all know proper clinical trials are not going to be done into LDN because it costs 50p per day and it is based on an out of patent drug. LDN has been around for 25 years.

I repeat why are so many trying to divert the simple question asked into debates on entirely different issues?

If someone want to start a debate on a different subject then start a different topic.

Hi

Oral steroids for a month?? No wonder you feel so bad, that’s an awful long dose. Was that prescribed by a neuro? Only it’s usually between about three days to a week. The recommendation is a short sharp high dose as prolonged use doesn’t have the same effect.

Just to clarify, steroids are not the same as DMDs. If a DMD is doing it’s job properly the need for steroids is greatly reduced as they reduce the frequency and severity of relapses.

Val

Flippin’ 'eck! That is a horrible experience! I also hate steroids. Oral steroids made me feel appalling the one and only time I took them (I can’t remember the details - it was a long time ago - but I honestly thought they were killing me) so I promised myself I would never have them again. My neuro assured me that IV steroids were much better than oral steroids so I had them in 2010. They completely screwed up my digestive system so I’m now on more meds for that than I am for my MS!

Never never NEVER NEVER again!

I will happily kill anyone who tries to take my DMDs away from me again though - never want to experience another year off them - I was taken off Copaxone and had back to back relapses. I went from about 1.5 on the EDSS to 6 :frowning:

Please don’t expect miracles from LDN. It certainly helps some of my RRMSer friends with some of their symptoms though - I hope it helps you too.

Karen x

Hi Everyone !! I was overwhelmed with the replys I got thanks to everyone. I did notice there is a big debate on LDN and I feel it should be up to us as an idvidel’s to decided weather to use it or not.I have not had much luck with help to handle my ms pain and every day living and was very happy to have LDN to try. I live in Australia and found out about through a freind in England.I can not get it on our N.H. but its not that dear. Lets hope it becomes avaliable in England to more people so everyone can make their own minds up about it.

Once again thanks Sherbet

Same tired old line, eh David?

References to “medical conferences” when it should have been pseudo-medical conferences.
References to out-of-date papers.
The same old line about there not being trials of LDN because there is nothing in it for the big pharmaceutical companies.
The same old line about no-one making any money out of LDN.

Why, I wonder, did you not quote from the American LDN Conferences?
Could it just be because the papers there do not support your arguments?

Until the USA LDN Conferences faded away, it was starting to become obvious that LDN was being clinically trialled to ascertain its effectiveness as a treatment for several medical conditions. Obviously someone was prepared to fund these trials (not that Stage l trials with but a few participants cost very much to run). As a result, there is some scientifically valid evidence that LDN is beneficial for those suffering with HIV/AIDS. There is some scientifically valid evidence that LDN is beneficial for those suffering with Crohns Disease. All the trials regarding MS that I took the trouble to look at, were not conclusive.

Perhaps the most telling of all was a trial where the difference between the experimental and control groups was confounded by there not being any control for those already taking immunosuppressants (DMDs in other words.
So, yes there have been trials, but no, they do not produce the expected results.

As lapreguiceira said earlier today

“I take Rebif to stop my relapses and LDN to help with symptoms.”

If you do not know the difference between treating the condition, and treating the symptoms, then you really should not suggest that LDN is a cure for any MS ills. Moreover, you should not be recommending any starting dose – unless you have a medical qualification.

“4.5Mg is generally the recommended dose”

You can say that others have found that 4.5Mg is a good starting point, but you do go a little too far in your enthusiasm for LDN.

What else? Oh yes, money. In your words “10s of thousands of people” and “50p per dose” suggests that the LDN supply industry is worth close to £0.4 million. Not exactly small change is that. Many small businesses would love a turnover that big.
Of course, maybe your “10s of thousands” is world wide, and there are only a few hundred in the UK – but your statements and your numbers do not quite match.

Geoff

Good evening ‘Mhairi’

There is no comparison between LDN and the interferons. The interferons are a medically recognised treatment for MS, LDN is not.

However just to make my position clear, I do not have any problem with the use of LDN to help with the symptoms of MS, what I have great concern about are the wild claims that are made about its effectiveness for the treatment of progression of MS, for which there is no scientific evidence whatsoever. God forbid that anybody should take these claims seriously and ignore medical advice to take DMDs and end up needlessly seriously disabled…

I am pleased that you believe that LDN has improved your quality of life and slowed down progression. Unfortunately such are the vagaries of MS that there is no way that you can know that this is due to the LDN. You say your personal experience is not anecdotal, that is exactly what anecdotal evidence is.

Tonto, you have said it all.

Mhairi, I have no problem with anyone taking LDN.
What I do have a problem with is wild claims that are not supported by valid scientific evidence.

Anecdotal evidence is just that - what one person says about their experience with (in this case) LDN; and, on this forum, we have heard from people with both good and bad experiences with LDN. I don’t pick out the good one, or the bad ones - as a scientist, I tag them all as “anecdotal”.

But, if one person turns down a tried and tested DMD, and suffers as a consequence, then I just hope that the people who made the unsupported claims that induced them to do so, can live with their conciences.

Geoff