LDN survey?

Everyday living
1

Hello everyone,

Just been thinking again (dangerous for me I know, lol! ) about the LDN debate.

I was wondering if there has been an actual survey on:

a) The amount of people on these boards actually using LDN?

b) Their experiences with it? As in have they got worse? better? vastly improved? that type of thing really.

If anyone else can figure out any other relevant questions then please feel free to add them.

Asking as for me personally it would be really good to hear how LDN has / hasn’t helped straight from the people who have actually used it. Especially as most of the professionals are quite coy with the details. Albeit through no fault of their own as I believe their hands are tied.

Thank you all for taking time to read this and hopefully contribute too.

tc

Anna x

2

I just had my first month on liquid LDN, now moved on to 4mg tabs - haven’t noticed much to be honest but at the end of the day i have only started this therapy - i’m on copaxone as well…Really hope it helps with fatigue as i’m whacked at the moment

3

Hi Anna,

Yes, I take LDN. I started it in 08, when I moved to Spain…

I was diagnosed in 2000 and started Rebif pretty soon after and it has worked very well since then.

I was hoping not to have the side-effects and to my great surprise, I didn’t. I had to stop the Rebif when I ran out after moving to Spain, so thought that I’d give LDN a try. I did feel great - lots of energy and much improved bladder function. I had less spasticity as well.

So, in 09 on LDN alone, I had a sudden and very severe relapse, which put me in hospital for 2 weeks and I was struggling for months after, with balance problems and muscle spasms.

The local health authority were very kind and agreed to fund Rebif for me and now I take Rebif and LDN.

LDN makes me feel better and it has really helped my bladder function. I have a normal bladder now, which is a pretty big thing with MS.

I’ve had MS for a long time. My neuro here isn’t an MS specialist, but he reckons that I got lucky and that my MS hasn’t progressed because I started Rebif quickly, but I don’t know. I just think I got lucky.

What I do know, is that MS can be very, very nasty. My first relapse almost killed me and has left me with very bad hypertension - for which I take 3 drugs.

If you are having lots of relapses, then the best thing to do is to try to stop them. I reckon that if Tysabri had been around then, I’d have qualified to start it, but I feel lucky that at least something worked.

I did an interview with Linda Elsegood for the LDN Trust’s DVD and I’m happy with it - but I won’t take it on its own again. I’m very happy with the combination of beta-interferon and LDN. I’d recommend it for help with symptoms in RRMS.

I don’t have a valid opinion on PPMS, but after so many years of reading about MS, it does seem to be quite different. As there’s no drug therapy right now, LDN is worth a try.

I throw what I can at the MS. Lots of Vitamin D3, a gluten-free diet, exercise and it’s taken a long time to get back to stability, but I’m very fortunate, that despite some dreadful relapses, I’m pretty much back to where I was when I was diagnosed.

I do think that is just luck though.

best wishes,

Katrine

4

Hi Anna

LDN was trumpeted to me as the great fix all, waste of damned money/time and worse of all the fragile thing, hope!! I had to try it BUT it did nothing for me.

I firmly believe there is hope

Take care, M

5

If you type “ldn” into the search it will bring up quite a few posts about ldn. You can find more useful testimonials at www.ldnresearchtrust.org.

There were 330 people who included ldn in their profile on the old site. Your GP can prescribe ldn on the NHS if they consider it is in your best interest as a patient, so hands are not tied.

I find it has helped with most symptoms and significantly slowed down progression, so what’s not to like? Of course, it doesn’t work for everyone (what does?) and best to manage your expectations if you intend to try ldn.

6

l learnt about LDN from this forum - when l joined about 3yrs ago. l have had SPMS for 30yrs and have never been offered any treatment. l get my LDN via emed/Dicksons because my GP could not , at the time prescribe it, but she is all for it and does monitor my taking it. l was fortunate as l benefitted from it straightaway. l feel so much more positive - no more brain fog. l do take mine 4.5mg about 8pm - as by the time l am in bed the effects have worn off - lt only stays in the system for 4hrs. No Way is LDN addictive - in fact in a much higher dose it is given to people addicted to alcohol to help them stop drinking.

lt should not be taken with opiates - and best not to drink alcohol with it.

All l can say is - l wish l had known about it years ago.

lf you look at the drugs that most MS people take - drugs designed for epilepsy/bi-polar/chemotherapyHIV/most with serious side-effects that can cause liver/kidney failure- and all prescribed by GP/Neuros and none of them designed for MS use. - lt makes you wonder who the so called experts are.

LDN was never intended as a cure - lt is for help with many symptoms - works well to help regain bladder control. And l have certainly not ‘progressed’ since l have been taking it. LDN makes me feel more able to cope - more alive.

Frances.