19 posts Page 2 of 2
Hi- I've been on LDN for about 6yrs. I am on 4.5mg.

When I first went on it, I saw some huge improvements- my eyesight is damaged from optic neuritis and the eye consultant told me that there would be no further improvements (18 months on from the relapse). I felt that my sight had improved after LDN- and this was confirmed by the consultant at my next apt, he was amazed! :)
My optic nerve now shows very little sign of damage.

I noticed a big change in feeling dizzy and sensory sensitivity- loud noises, too much noise feeling physically unbearable and very disorientating. I had come to expect this as 'the new normal' but this really improved after LDN and I now rarely suffer from it.

My fatigue also improved but I can't be too specific about this- as it all feels such a long time ago now, it is difficult to measure but I now work 4 days a week in a very fast paced social work team, as a social worker. When I started LDN, I didn't think I would be able to return to work.

Unfortunately, the LDN didn't eradicate the relapses and I have tried DMD's to stop these- with mixed results. I am hoping that after I have been on OMS for 12-18 months (currently 5 months) I can cut the DMD's out and just stay on LDN.

When I first went on it, I had the most vivd dreams, that I really couldn't distinguish from reality. I had to write EVERYTHING down. For about a year I thought that Billy Crystal was dead- I must have dreamed it but even now, I still can't believe it was a dream!

Apart from that (which wore off after a month or so) I have had only positive changes.

Good luck all x
I've started on LDN today and wanted to post my experiences from a UK perspective. My current regime is OMS plus Tecfidera and 10,000 IU of Vit D and I'll be starting on 1mg of Natrexone increasing by 1mg a week until I get to 4.5 mg.

My neurologist won't prescribe LDN, but is open to me trying it out on a private prescription. My GP won't prescribe it, but I have met another local GP who would, so if it works out, I might change GP.

To get LDN, I followed links through the LDN Research Trust which eventually led me to clinic158.com who will provide a private consultation. I had to fill out a questionnaire including medical details, a list of my current medications and an email confirming that I had MS. The next day, a consultant rang, went though the answers I'd given and went through lots of information on LDN. They're connected to Dickson's Chemist in Glasgow who are the only pharmacy that supplies LDN in the UK and they send the prescription direct to the chemist - you don't need to do anything. Today, my first bottle of LDN arrived in the post. The whole process took a week.

I think the cost will be less than £30 a month with prescriptions and consultation taken into account although I'm not sure at this stage as the first consultation was more (£35), but included the cost of the LDN for a month. Subsequent consultations are £25 every three months plus £17.50 a month for the LDN.

Anyway, I'll post every week or so with my experiences.
OMS since 17/08/2015
Diagnosis 28/05/2015 - 22/09/2015
Many thanks for this informative post. I'm minded to start LDN too but have not got as far along the road as you (GP said no, neurologist not replied to letter yet) so it's a huge help to 'piggyback' on your experience of going private.

Look forward to reading how you get on. Hope it works for you!

Jette
The Gut Microbiome is KEY to optimal health.
The OMS site & forum are brilliant! Thanks, everyone! :D
So, one week in and nothing has changed. I've only been on 1 ml for the first week to check for side effects (final dose is 4.5 ml) and I have had absolutely no side effects. On such a low dose (of a low dose), I'm not expecting any improvements of symptoms and I'm well aware that it might be six months before I get the full effect.

Now onto 2 ml for a week
OMS since 17/08/2015
Diagnosis 28/05/2015 - 22/09/2015
Diggity wrote: So, one week in and nothing has changed. I've only been on 1 ml for the first week to check for side effects (final dose is 4.5 ml) and I have had absolutely no side effects. On such a low dose (of a low dose), I'm not expecting any improvements of symptoms and I'm well aware that it might be six months before I get the full effect.

Now onto 2 ml for a week



I'm a member of the Facebook group 'LDN research trust' this site is very informative and had people from all over the world on LDN for all sorts of autoimmune issues.

Just a note 4.5mg isn't a goal many find there best dose is lower than this.
If it is liquid LDN you are taking its important to keep it in a cool place or in the fridge.
The filler used should be OMS friendly and can make a difference to how it works.
LDN doesn't work well if there is a candida in the body.
Have a good read of the files in the LDN Research Trust site, it will answer many of your questions.
Blueberry wrote:
Diggity wrote: So, one week in and nothing has changed. I've only been on 1 ml for the first week to check for side effects (final dose is 4.5 ml) and I have had absolutely no side effects. On such a low dose (of a low dose), I'm not expecting any improvements of symptoms and I'm well aware that it might be six months before I get the full effect.

Now onto 2 ml for a week



I'm a member of the Facebook group 'LDN research trust' this site is very informative and had people from all over the world on LDN for all sorts of autoimmune issues.

Just a note 4.5mg isn't a goal many find there best dose is lower than this.
If it is liquid LDN you are taking its important to keep it in a cool place or in the fridge.
The filler used should be OMS friendly and can make a difference to how it works.
LDN doesn't work well if there is a candida in the body.
Have a good read of the files in the LDN Research Trust site, it will answer many of your questions.


Thanks for this. I've been told that the only filler is distilled water and I do keep it in the fridge. I'll have a look at the FaceBook group.
OMS since 17/08/2015
Diagnosis 28/05/2015 - 22/09/2015
After my second week (on 2ml a day this week) I've still got no side effects at all.

I do feel like I've got more energy (less fatigue), but this could be placebo or could be increased fitness through more exercise. Anyway, I'm cautiously optimistic.

On to 3ml for a week now.
OMS since 17/08/2015
Diagnosis 28/05/2015 - 22/09/2015
Great to hear!
The less fatigue could well be the LDN.
I'm still only on 1.5mg so you are doing great.
If you get any flares in m.s symptoms ( this is not a new attack, just what happens sometimes when one increases LDN which does settle down after a while) you may want to consider going slower on your increases. However if you have no flares just continue, it's great things are going so well.
Having been on LDN for a while now, I'm convinced that it's helping with symptoms. I had a week off the LDN and felt more fatigue and worse balance. Back on it now and feeling much better. It hasn't helped with everything, but certainly makes me feel more "normal".
OMS since 17/08/2015
Diagnosis 28/05/2015 - 22/09/2015
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