Mornin’ Rusty. Hubby and I both began LDN at the start of this year. I’ve ms, he has fibromyalgia. Having done copious amounts of research and joined the FB closed group. Great first hand info there. I’m very disappointed as it did absolutely nothing for me and I’ve now stopped taking it. Hubby persists. He seems to think it’s improved his sleep quality. If I’d even experienced a placebo affect, I would have been pleased. I had to go through hoops to get a script as neither my GP nor Neuro would prescribe. Got a private script from uk. Thousands of people swear by it and surely they can’t all be wrong? For me though, nothing.
Thanks for you honest information, yes I expect to have to go through ‘hoops’ but as my neuro and clinician seem slow or reluctant on the DMT front, as the first one gave me awful side effects, I am keen to try something! and as you say thousands seem to swear by it!, so wish me luck and thanks again.
RustyK 
I swear by it. A year’s supply costs me just about £18.00 . It doesn’t exist as a drug where I live, so I buy a packet, make up a solution and take a teaspoon, approx 4.5 ml.
My mother tried it and she couldn’t take it. She had to stop (on prescription) as her diarrhea became impossible to live with. She has had ME for over 20 years. I so hoped it would help her. Diarrhea is a well known side effect.
xx
Hi Rusty K,
As I’m new to all this I went armed to my MS specialist neuro last month with a list of different things I’d read about as being helpful in combating this disease instead of/ in addition to DMDs. Whilst my neuro was very supportive of my taking Vit D3 /B12, he pretty much thought LDN was a fad akin to snake oil and the CCSVI treatments of a while back and was very dismissive. I’ve decided to follow his lead on this one and put my faith in the trailed and tested DMDs (as strong as I can get them, as fast as I can get them). That said, if it works for individual people then that’s great - and I don’t mean to knock any help/comfort people have found from this.
K
Thanks, haven’t heard about snake oil or whatever CCSV1 treatment is! But thankyou for your insight.
RustyK
The New Pathways magazine - published by ms-uk - This weeks issue 96 has lots in it about LDN - and also stem cell treatment for those interested.
This publication is always very interesting and well worth subscribing to.
I wouldn’t worry too much about these daft names, because ldn has been around for 30 years as a treatment and there are an estimated 100,000 people using it worldwide for a variety of autoimmune conditions, which isn’t too bad for anecdotal evidence.
It’s definitely not a substitute for DMD’s though, as they work in different ways, but you can safely combine both treatments.
Hopefully, ldn will work for you, but you need to give it a fair chance because it can take some time to work.
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Rusty, just so you are aware, Snake Oil is just a derogatory term and not an actual treatment. :-).
In days of old when travelling salesmen/doctors, (“Quack doctors”, as in not actually qualified) would ply their wares from a box on the street, selling a wonder “cure all” potion.
It was a fallacy, or a Placebo at best. My own Neuro is a woman who rolls her eyeballs a lot, and believed it was “snake oil”. Now if you already knew this, then please forgive me.