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 āEvidence based Medicineā argument. Take that discussion elsewhere is what I am suggesting.
For those who missed the link here it is again.
ā¦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 siteās 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 thatās 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.
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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.
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One personās 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.
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Iām sorry that DMDs did not work for you, but that does not mean that they donāt work for others. Equally, LDN doesnāt work for everyone, but that doesnāt mean that it doesnāt work for others.
The people arguing against david603ās statements are not anti-LDN. We are anti bad advice.
If you are against bad advise then please be honest about DMDās - 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.
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 ā 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 DMDās 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 canāt say something nice - then say nothing at all.
Can we extend this to if you canāt say something, which is true, then say nothing at allā
I too am concerned about newly diagnosed being given inaccurate and false information.
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 itās true to say that everyoneās experiences are different and what ever works for one person isnāt necessarily good for someone else. My good friend (Sherbert) is grateful for the information she has received but she didnāt expect the level of argument that has gone on. Letās hope that it does become available on the NHS but if it doesnāt 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
Iād be very scared if I was just diagnosed and Iād read Mhairiās untrue and biased opinions. The good thing about this forum is the range of experiences and views. There are people whoāve been on beta-interferon since the mid-late 1990s. Weāre still alive and havenāt got compromised immune systems. If a DMD works, then you wonāt get ābenefitā from it. It wonāt make you feel better and it canāt 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.
Itās unfair of David603 to keep on asserting that heās somehow a LDN expert. This is āadviceā 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 thatās just RRMS. The one good thing thatās 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 arenāt opposites. They can be taken together and that the person with RRMS can benefit and yes, Iāve had a benefit and yes, Iām an advocate. Iām 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. Itās 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. Itās been a lifesaver.
Iām tired. Iām very tired of repeating over and over that LDN is not a better drug for RRMS than Tysabri or Campath or beta-interferon. Itās 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? Iām not the only one who is scared and Iām 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 Iād 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, itās stupid to reply to you David. You donāt take anyone elseās opinions seriously or have respect for people who are just trying to live with their MS. So thatās it.
Katrine
As you know I have never taken DMDās 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 DMās, 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 didnāt notice any wild sensational claims. I think you just got caught up in some friendly fire, thatās 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 donāt 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 thatās another debate which I havenāt 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 ādown the chip shopā! In answer to the original question, Iām sorry I donāt know, when I tried it I could barely manage 1ml. Cheryl:)
Tonto
Not particularly I answered your comment specifically my question still is why you thought it necessary to open a link?
Do you think people here are incapable of opening links and reading overwhelming anecdotal evidence for themselves?
What is being forgotten here is that the only licensed drug proven to reduce disease progress to licensing standards in the UK and available on the NHS is Tysabri.
Some people would not want that because of the risks but possibly even more importantly many who would want it will not be offered it though a combination of other people making decisions for them about what risk they are allowed to run and the good old NHS rationing and post code lottery system.
Therefore if most people want to stop or reduce disease progress they have to consider other options which are available sometimes on the NHS, as in the case of LDN (post code lottery again) or other treatments like that for CCSVI, diet and no doubt many others that everyone has to fund for themselves.
People like me are portrayed as being against scientific methods. That is not true, my entire working life was spent in the scientific field.
It is just that so far in the 150 years that MS has been known about that scientific method has not come up with a safe proven method available to all with a diagnosis of MS to even stop disease progress.
LDN is just one of other things people can experiment with to see if it will stop disease progress for them. The other advantage of LDN is it is simple and cheap to try even if your PCT will not fund it. It is therefore available to the majority of people with a diagnosis of MS in the UK.
Your own words from the old boards. Yes, I did actually go back through your old posts. I think Iāve wasted enough of my life on you now.
19/09/10 "Just in case you do not understand the reference to Joseph Wouk. He was one of the speakers at the 2009 LDN conference in Glasgow.
He basically attacked this message board calling everyone who disagreed with him a pharma shill.
It was entertaining to watch but I personally think he went a bit far in that whist these message boards are frequented by pharma shills it is impossible to tell the difference between a pharma shill and people who are genuinely taken in by drug industry PR."
Same date āThere is no way of proving the motif of any poster, so have pharma shills every put posts on this board effectively advertising DMDās Campath Tysabri whatever, of course. However many of the posts will also come from genuine people with MS that have found these products of use.ā
"The problem is that sometimes only options you do not like exist. My wife and I hate drugs and would avoid them at all costs. "