15 posts Page 1 of 2
Hi everyone. I’m another committed OMSer who regularly visits the site for the latest news and to read forum posts, but to date have only managed one of my own! Should thank all you regulars, you know who you are, for some interesting insights, comments etc, over the past few years.

Anyway, I’ve had RRMS for 38 years and am now 67 yo. Although I’ve had good results from my four year commitment to OMS, unfortunately I am currently in the throes of a relapse, probably triggered by a couple of stressful spells, and just on the tapering off course from my oral high-dose steroids. I am now giving serious consideration to trying LDN and have a very supportive GP who is happy to help. I’d be really grateful if anyone who has had good results with LDN could either post about their experience, or possibly PM me.

What was your starting dose, how quickly did you build up and to what? Did you have relief from persistent symptoms and has this effect lasted? What is the optimum time of day to take LDN? Most people seem to take it at bedtime, but I read somewhere that it can be taken in the morning. Has dispensing of LDN been straightforward for any Kiwis reading this?

I’m hoping to get some relief from persistent fatigue and intractable mid-phase insomnia.
Hi Mairi
I have MS just over 10 years, I have been taking LDN for about 8 years, I started when my consultant couldn't offer me anything when Rebif/Interferon did not agree with me, he didn't seem to know that Copaxone is different. I started at 3mg and built up to 4.5. I take it just before bed. Initially, I did get diarrhoea once or twice but this settled after a few days.

I am not sure how it helps as I have been modifying my diet, having Reiki and taking Copaxone as well. I have 2 main symptoms my leg and my bladder. Following the OMS program for years but only properly in the last 3 months, I have noticed that my walking is stronger and faster but still not any longer. In relation to my bladder, I self catheterise and get botox. It was very distressing but now it is very much under control.

So I cant say exactly what the LDN does, maybe it helps with fatigue as I generally don't get too much. Before I went on LDN I read Up the Creek without a paddle, you might find that interesting. Its about a man who goes from Avonex to LDN and finds it brilliant.

In my eyes I cant see any harm in you trying it. I am sure that you will make the right decision.
Take care

Nicola
Nicola Corbett

Dublin, Ireland

'Nothing tastes as good as walking feels'

DX 2003, Swank 2004, OMS 2013, OMS Retreat March 2014
Hi Nicola

Many thanks for responding and telling me about your experience with LDN. Also for the book recommendation, which looks as though it is Up the Creek with a Paddle by Mary Boyle Bradley and has excellent reviews on amazon. However, I see the first edition is now out of print, but the author wrote an updated version in 2009 which is available on amazon in both paperback and kindle, so will get that today. I've pretty much made my mind up regarding LDN and happy to have your positive feedback. My GP is on board, I just need to find a local pharmacy (hopefully) that will come to the party. Fingers crossed it won't take too long to set up and in time, I'll post an update on progress.

Best wishes and take care
Mairi
Hi to all OMS followers I was reading about LDN comments here ÃŽ heard recently about book called Honest Medicine which is about LDN anyone read already ,they say its very good.Best wishes and regards Mirjana
I've been on LDN for 12 months now, started at 2.0 & now at 4.0, I noticed it helped my bladder & spasticity on the first night. From what I gather it helps regulate the immune system and boosts endorphins while you are sleeping, after taking it at bedtime.

The only side effect iv'e had are very *vivid* dreams! I mean I've been to other countries, planets, in movies, in fights, in conversations etc, and woke up swearing it really happened! Don't know how m ch of a help I was, best wishes
Hi,

I've just started LDN - my neuro was kind enough to prescribe it at my request even though he doesn't think it will do much. There is a very active community promoting LDN, the LDN Research Trust. They are very informative and very helpful.

Check out the Facebook page where patients share their experiences and get views from experts: https://www.facebook.com/groups/LDNRT/

Their website is: http://www.ldnresearchtrust.org/

The dosing regime I am following is:

"Dr. Skip Lenz, a pharmacist who takes LDN prophylactically, recommends a nightly dose of 1.5 mg the first month, 3 mg the next month, and 4.5 mg thereafter."

You mentioned stress has caused your relapses. I feel that stress has been the cause of all of my relapses also and hoped that LDN would insulate me. I was therefore disappointed to read this from one of the LDN factsheets by Dr Dudley Delaney:

"Whatever its cause, if your stress level is high enough, it will easily nullify or overrule the beneficial effects of LDN, proper diet, colloidal minerals, food supplements, and anything else you happen to be doing to treat your MS. In 2004, Dr. David Mohr analyzed 14 studies relating to stress and MS. He concluded stressful events not only tend to precede the initial onset of MS, but also increase the risk of MS exacerbations, disease progression, and lesions on MRI. Avoid stress like the plague."

Hopefully stress doesn't nullify the whole of OMS! I am also taking other proactive efforts to reduce stress. I have started Transcendental Meditation, but this is not an instant cure for stress. I am also making an active effort to tell myself "I will not get stressed by X, Y, Z because of my MS". I have tried to use this technique of telling myself not to be stressed before I had MS without great success. But now I have a definite imperative of avoiding MS attacks now, this technique is working better - not perfect, but better!

Good luck with the LDN!

Cheers
Chris
Hi

I've been taking LDN since January (OMS for 7 months prior to that) and am on a 4mg dose after working up from 1mg as recommended by the prescribing doctor. I've had to get it on private prescription from Dr Bob Lawrence in Wales, UK on the LDN research trust website.

I've had no side effects at all and the biggest improvement has been in my fatigue. It's still quite bad, as my worst symptom, but sooo much better. I feel like me again! My bladder control has also improved recently LDN or OMS who knows? I say give it a go especially as your GP will prescribe. You can always stop if you get bad side effects.

Hope you do well with it if you go ahead.
Hi Mairi

I just started LDN about a month ago so possibly a bit early to notice many results. My doctor prescribed 4.5mg capsules straight away and I did worry that I should be working up to that dose but as the doctor said, people don't have a problem with the 50mg dose so why would 4.5mg be a problem. Sure enough, I didn't notice a single side effect, not even the amazing dreams I was expecting to have!

Take care
Jo
Hi,

Just on dosing, the LDN Trust notes that a number of people have problems if they go straight up to 4.5mgs, though some people are absolutely fine with that. They also note that a number of people find that their ideal dose is less than 4.5mgs, say 3mgs.

https://www.facebook.com/groups/LDNRT/

http://www.ldnresearchtrust.org/

Cheers
Chris
I started almost six weeks ago on 0.5 ml - increasing by0.5 ml weekly. When I went up to 3ml I got very stiff legs so I went down to 2 ml again for a few days - the legs got even stiffer, so I threw caution to the wind and took 4.5 ml - legs feel much better. Initially I was very fatigued on LDN but now I can say that it has helped hugely with fatigue, eliminated MS hug (praise the lord) and helped me to feel sharper and more alert - also feel a bit more upbeat. I'm also having acupuncture for the stiffness in my legs - that is still bothering me, but I feel that it is getting better.
I would say, persist with the LDN for a minimum of three months (some say six) - I did have a week or two (in the middle not the beginning) where I felt that it wasn't working but now I am sure that it is.
15 posts Page 1 of 2

Who is online

Users browsing this forum: No registered users and 1 guest