8 posts Page 1 of 1
Hello, I was just wondering if anyone would like to share their experience on LDN. In particular dosage and any improvements. I am considering starting this soon. I follow OMS lifestyle and was diagnosed 13 yrs ago. Have trialled many of the medications available but I just don't tolerate these as they have made me feel awful.... I guess I just want to do what ever it takes to stay healthy. Thank you
I'm taking LDN.

Typically, you start low (1mg) and increase by a mg a week until you reach 4.5 mg. The problem is that this is all very self prescribed and you need to work out what's best by trial and error. I've personally found better results with fatigue reduction by going back down to 3mg. The changes are instant for some, gradual for some, take years for some and never occur for some. The only side effect for me is vivid dreams - not nightmares, just dreams and not at all unpleasant.

The other thing to experiment with is when to take LDN. LDN works by triggering your body to rebound against it. With that in mind, most people take it in the evening to then get the rebound during the day, but others prefer it in the morning.

There is much more information at: https://www.facebook.com/groups/LDNRT which is a closed FaceBook group that you have to join. Also have a look at http://www.ldnresearchtrust.org/
OMS since 17/08/2015
Diagnosis 28/05/2015 - 22/09/2015
I started LDN a couple of months ago and initially followed the advice to increase by 1ml a week but found once I got beyond 1ml the LDN seemed to trigger a resurgence of MS-like symptoms that I thought I had left behind (insomnia, depression, exhaustion, leg spasms among them). By the time I got to 3ml I really was not feeling very well. I stayed on 3ml for some weeks hoping things would stabilise, then reduced it to 2ml but eventually came off the LDN altogether. That made me realise that I felt better with some LDN so after a short break I went back on 1ml a day and have stayed with that dose for some weeks. The 1ml dose definitely seems to help with general wellbeing and energy levels. With time I may try and increase it a bit, but shall do in tiny increments.

Forum member Blueberry has mentioned being on a 1.5ml dose. Diggity reports going back down to 3ml. There definitely seems to be a pattern of having to listen to one's body and finding the dose that's right for you?

Good luck!
Jette


PS I like your username! The adventures of the indomitable and resourceful Pippi Longstocking figured prominently in my childhood - she's a good role model for OMS!
The Gut Microbiome is KEY to optimal health.
The OMS site & forum are brilliant! Thanks, everyone! :D
Hi yes I'm on LDN
Started at 1mg/ml increased very slowly as like others each time I increased the m.s symptoms would flare ( this is not a new attack )
I'm still only on 1.5mg/ml after over a year. Can't seem to go higher.
Most people with m.s have their dose eventually as 3mg.

Do join the Facebook group...
LDN research trust.
Look at their files all info there and any questions the group is fantastic at answering.

For me LDN improved mood and fatigue.
Thank you for your replies... It is very helpful and I am very grateful for any tips, experiences or useful resources. It's just wonderful to pick like minded brains about all things MS. This forum is just wonderful.
Thanks again ;)
Hi Jette,
Forgot to mention, that yes I agree Pippi Longstocking was and is a great role model! As a child I would come across some sort of challenge/decision and think what would Pippi do? Sometimes in adulthood I ask the same, yes draw on strength and courage, take a risk maybe. I think she is brave.... I like to read her stories to my girls they are 13 and 9 now and I hope they can admire her traits. Wishing you good health.
I had my script filled today My GP recommended a compounding pharmacy in Surry hills, pharmacist was lovely... I think I may start at 1mg . I will post my progress in the coming weeks.
Thanks again to all replies
:) :)
I started LDN in 2007 and stayed on it for 8 years. I started at 1.5mg and increased gradually til I reached optimum dose of 4.5mg. I found it extremely beneficial for urinary problems and fatigue. I began George's program in 2006, after attending a retreat in Yarra Valley and after following recommendations for some time, I stabilised my condition (SPMS) and stopped progression.

As a result, I stopped taking LDN as I found that the OMS program was all that I needed to keep well and maintain my quality of life. I cannot recommend this program highly enough.

Cheers

Diz
Thank you Diz,
Love to hear others experiences on this med. Yes I have done the retreat and a follow up one! Fabulous experience. My MS is a little unstable due to stress... My sister having breast cancer, work , kids etc..exhausting stuff, so I have taken a year off work to sort ME out and just slow down! Time to really concentrate on meditation, good quality foods as per OMS and spend time with friends and family.
Thanks again Diz
:)
8 posts Page 1 of 1

Who is online

Users browsing this forum: No registered users and 2 guests