Hi,
I was just wondering if anyone has tried, is using LDN and what experience has been?
Thanks,
Adrian
Did try it for nearly year. Fraid tbh didn’t notice much if any difference but different folk respond differently so may work for you. If you can get it NHS or afford to pay for private ((which is what I did) try it.
Read the “LDN and medics” thread alot of info on their about it. Speak to your ms nurse or gp to see about your options if you decide to try it.
Sorry, I didn’t see the other thread. I have to start Rebif tomorrow and I have real reservations about it. I would have preferred to try something like LDN before I actually tried something like Rebif. I feel that I have had RRMS for about 6 years, I was diagnosed last year. My symptoms are very mild, so I am a bit reticent about taking a drug which can have such severe side-effects. I was looking at this site earlier http://www.patientslikeme.com/conditions/1-ms-multiple-sclerosis and even though the size of the group taking LDN is very small. it’s percieved efficacy is good and it’s tolerance is also very good, in fact better than any of the interferons. So I am a bit perplexed.
LDN is not a substitute for Rebif.
If my medical were advising me to take Rebif, I would have to have very good reasons not to take that advice.
I’m taking avonex, the first injection was by far the worst. I had all the flu symptoms they say to expect. but it has died down now, it took about 3 doses and now i only get a small headache. But it does take some time to get over the fact you have to inject yourself. Let us know how you got on. The first step is the hardest.
Their was a study on ldn in ms carried out at the uni of california, that finished in 2010. It did show it helps with ms but they say it warrants more studys and testing to get realiable info.
Hi Tonto,
Have you tried Rebif or LDN?
Thanks,
Adrian
I,ve been on LDN for 18 months, no side effects, still feels beneficial,
Peter
Thanks Peter. I was going to ask you whether it had stopped relapses but you are PPMS. Has it slowed down the progression?
Adrian
hiya
have been on ldn for nearly 6 years. had 11 attacks during the 2 years before starting, have has 2 huge attacks since-2007 and 2012. have had ‘niggly’ things inbetween. despite neuro attempt to guilt trip me-if u r in a wheelchair in 10years time wont u feel guilty that u didnt try dmds-i am very happy with my decision to take ldn and minimal symptom treatment (amitripyline at lose dose) . my family were involved in my decision and support/understand me.
as i see it each one of us has to make our own decision regarding how we will cope with life as well as ms. consider the evidence-not just in research but in what makes ‘you’ and how u live ur life.
ellie x
Hi Ellie,
Thanks for that. To some people it would appear that anything that hasn’t been scientifically proven can’t possibly work.
They try to say that SWJ doesn’t work for depression. I’ve been taking it for five year and it does work. I would be depressed without it.
So for you, LDN does work. So thank you very much for that. I think that I am a little late, my MS nurse is coming round today to administer my first Rebif injection. I think thatI am committed now, so I will see how it goes. I do have serious reservations though.
Thanks for your reply.
Adrian x
Good luck with the first jab. you will be fine stock up on ibruprofen and parracetomol. Tell your ms nurse about your reservations and interest in ldn. You never know they may have some info on it.
Thanks a lot Darren. 
I was on LDN for about two years. I was fine at first - slowly deteriorating but no attacks. I had turned down Interferons because, at the time, the medical viewpoint was that the interferon drugs reduced relapses but did not slow the progression of the disease. Does your neuro think that the rebif will slow the progression of your disease? If you don’t have bad relapses presently, that seems to be the important question.
Since I wasn’t having relapses at the time, I couldn’t see the point of taking interferon. While I was on LDN I started having relapses. I don’t think the two things were connected - it was just that my MS was moving into a new, much nastier phase. It seems unlikely the LDN did any good for me tho’. I know lots of people think it helps them.
Obviously, you don’t want to be taking two new treatments at the same time, because you will never know which one is helping. However, there is no reason why you cannot combine both treatments, if you wish.
No problem, its not a walk in the park starting dmd’s. So far for me its been worth it and i hope it is for you.
hi adrian
i think that success depends alot on expectation! you can argue the fors and againsts that for ever! before starting ldn i looked into it for 5 months-it was not a decision i took lightly. i am lucky that i have friends who are ‘professionals’ in many areas-gp,pharmacist,mental health,ot and various others. none of these folk ‘told’ me what to do-they know better! but i know that i could count on them to tell me their truth and i would make the final decision. my expectation of ldn was to reduce relapses-and its done that. however the 2 that i have had have been mega. i am aware there is no cure. i am also aware that we know how little we know re the brain/mind and is capabilities!
i appreciate that professionals are doing their best in what they think is my best interests-am not so sure that they are doing their best for ME. dont ignore medical advice-listen and then decide if its right for you.
i was a staff nurse in nhs for 10 years and have learnt so much since leaving service and exploring new venues for discussion/pursing such as pain management via meditation. meditation has also taught me alot about human behaviour and why we act the way the do. some find is scary to make decisions-i find it empowering! we are all different eh?!
ellie x
DMDs do not just prevent relapses; they also reduce the severity of relapses that still happen. The evidence also shows that they can delay the onset of disability, increase life expectancy and slow progression.
What does LDN do? No one can say for sure because there have been no proper clinical studies. That means that there have been no comparisons between LDN and another drug, LDN and a placebo, LDN in different patient groups, etc.
The vast bulk of the evidence in LDN’s favour is anecdotal. However, what else are these people taking? What else have they tried? How about supplements? How about “liberation”? How about DMDs? How about newly touted “cures” like some of the gastro stuff that you can find on the internet? How about diet? How many have had relapses, but discounted them as “blips”? How many of them have had MRIs to demonstrate that they have no new lesions (or fewer new lesions than people who are not taking LDN)?
Moreover, there is no doubt that people who believe in LDN are more likely to post about it than people who don’t - that’s basic psychology - and that means that the anecdotal evidence is not representative.
Do I have anything against LDN? Absolutely not. I think it is sensible to try it if someone is SPMS, PPMS or RRMS but cannot get DMDs. I also think it is sensible to try LDN if you are on DMDs, but have symptoms that may be helped by it (e.g. mood). What I do not think is sensible is naysaying treatments that have proper evidence in their favour because of some misguided belief that something unproven must work because lots of blogs say it does.
MS is unpredictable. Its level of activity varies from year to year, it sometimes plateaus for years and in some people it seems to “burn itself out” and simply stop progressing. The only way to be able to know if any of these dynamics is related to a new drug or treatment is to do large scale studies that account for individual differences.
All we can do is what we think is best for ourselves (hopefully based on logic, reason and evidence along with a healthy measure of professional advice), but we cannot know if our MS would have been any different if we had / had not done something. At least with DMDs, we know that it probably would have been worse without them. At the moment, we cannot say that about LDN.
Well that was a bit of a none event. The company forgot to send me any needles. Me and the nurse were sitting there in hushed anticipation, me in my shorts and her with the Rebismart and then I realised there were no needles. Ooops. He he he. It’s a sign. I now have to wait a further two weeks.
Thanks Darren, Whammel and Ellie. I really appreciate your input. I think for me, it’s a defining moment. A drawing a line in the sand moment. I have pretty much decided to go with Rebif. I just feel so well at the moment and i really want to try and get back into work. I don’t really want to start feeling unwell because of the medication. Oh well, such is life huh?
Whammel, I don’t think that you can take both, as LDN excites the immune system and Rebif supresses it. Correct me if I’m wrong though.
Ellie, I do meditation. I love it. It really relaxes me. I do Mindfulness.
Thank you so much for your input. I really appreciate it.
Adrian x
Many people successfully combine the treatments and there is no contradiction. Some American sites still appear to struggle with this fact, but you can find some reliable information at www.ldnresearchtrust.org.