Can we do a quick check up? How are we all feeling? Is LDN still giving the benefits we expect / hope for? What dose do you take? I take only 2 ml. I have taken LDN for nearly two years. There has been no marked improvement in symptoms but I believe there has been no progression - I have remained stable. How are you all getting on? Roger.
My wife has been on 2.8 Mg for 8 years with minor improvements and no disease progress.
She started when she was going downhill very fast that stopped after 4 days on LDN.
It did take us about 6 months to make it work reliably partly because she is very sensitive to it and 4.5 Mg had a dramatic negative effect and partly that she had to move on and discover medical magnets to largely resolve a back problem, so far as we know not related to MS.
Good Morning Roger,
l am still taking my ldn - its 3yrs now - and l have spms - and l have not progressed. The improvements l got at the beginning are still the same. Feel mentally more positive - more alive. l take 4.5ml.
l was investigating natural anti-inflamatories /pain killers for my young dog who has arthritis in her elbow. The vet l researched
recommended something called D-Phenylalanine [along with omega 3/glucosamine/chrondoitin etc which l already give her]
So l googled D-Phenylalanine - and low and behold - it is recommended - by Birhari - to be taken with LDN - have a look for yourself. l have ordered some for me and my dog - and l am waiting for it to arrive. l emailed the vet who wrote about it and explained about my condition and ldn - he was very interested. He also mentions how necessary vitd3 is to animals. Think its time we all went to the vets!!!
l did submit a post about this [oct26th] - but nobody responded. So l am taking advantage of your post to bring it to light. As you probably
are aware Dr Birhari was one of the first to recommend LDN for MS use.
F.
Sorry,
l do not know why my post came on as anonymous! Yesterday it kept saying my username was not recognised.
Been on LDN now for 18 months. I have ppms and have noticed no deteriation in my well being or the progression of this awful disease.
I take liquid and on 3ml on a night time. Have had no side effects either from the drug. When I first mentioned this drug to the Nuero he said " There was not enough research done on it or info!". It has taken away all the Nueropathic pain I was having and nightly spasms!
To me this drug has been well worth the little extra we have to pay to get it.
C x
Hi,My neuro is prescribing LDN for me he’s great.I have been on a very low dose 2ml at night my next prescription which has been sent to dixons chemist is for a higher dose, 4.3ml I think.Anyway after takeing LDN for a couple of days I noticed a difference, feel more with it,able to concentrate better,tons more energy although I use a wheelchair mostly, I am much stronger when I stand and walk a little,my legs don’t feel wobbly and weak like they used to,I do think it is helping.I have also ordered d.Phenylalanine to take with it. I have spms so I will carry on takeing ldn, no side affects either.take care all.helen.x.
I am so pleased that LDN is providing such positive results for you all. I have learnt something today - about using D-phenylalanine alongside LDN. Thanks everyone for replying. Roger.
I have been on LDN since April 2009, it has helped my mood so I’m feeling a lot more positive, pins and needles in my fingers and toes is no more, I’m up to 3.5ml/mg my fatigue is no more after 2 days, I can and do at time do too much but I recover a lot quicker
unfortunately for me is has not stopped my progression, last time I was at neurology clinic he noticed my walking has detiriorated to such an extent, he gave me 5daysx500mg steroids there and than
next time I saw him my walking was improved to such an extent he has put me on copaxone everyday.
I did think I would be better by this time so I’m rather dissapointed with the results of my LDN but I’m still hoping and praying I see more improvements.pretty soon
Al x
Hi, not got much to say about Ldn, but interesting about the phenylalanine. Why? A lot of years ago, 15 + so most of you probably won’t even remember , there was a theory that said that vitamin b12 taken with coke would cure (or at least significantly help ms), think the lady that had the theory was Cari Loder, you can google this if you like. Now, isn’t there phenylalanine in coke? So, is this just the same old theories coming up time and time again in slightly different guises or is there something in it? Cheryl:)
Hi Cheryl - I don’t know anything about phenylalanine either but perhaps Campion ( above) may be able to enlighten us. The point she was making is that Dr Bihari , who has had so much to do with promoting LDN use, recommends its use - apparently. Worth researching perhaps? Roger
[quote=Upytupy]Hi, not got much to say about Ldn, but interesting about the phenylalanine. Why? A lot of years ago, 15 + so most of you probably won’t even remember , there was a theory that said that vitamin b12 taken with coke would cure (or at least significantly help ms), think the lady that had the theory was Cari Loder, you can google this if you like. Now, isn’t there phenylalanine in coke? So, is this just the same old theories coming up time and time again in slightly different guises or is there something in it? Cheryl:)[/quote
My wife tried that therapy without any success, however to answer you question.:- The Carry Loader therapy put the body into the fear and flight mode which for some seemed to give symptom improvement.
I have never seen any suggestion that LDN works this way with or without the addition of phenylalanine.
Hi All,
l am still waiting for my D-phenylalanine - l have been reading all the ‘googles’ on it. As l said in my original post
it was recommended by a vet - for my young dog who suffers with arthritis. lts a 'natural pain relief and anti-inflammatory - So it was just by accident that l found out - by googling - that its on the LDN forum. Poor Roxy was very lame yesterday - She has been on metacam for over a year and it does not seem to work anymore. Last night l gave her a couple of aspirin [ok’d by vet] and this morning she was bouncing about.
So l took a couple to see if l can ‘bounce’ with her. Do google D-phenylalanine everyone - And l hope my order arrives soon so l can let you know how me and my dog are ‘doing’.
Frances.
Hi,
I know how you feel - it’s hard to accept that there are no drugs for us SPers but at the moment that’s the case.
I don’t think (for once) that money is at the root of your neuros decision to stop DMDs - if you have gone SP they won’t do any good so what’s the point of taking the chemicals?
Lots of SPers swear by LDN. It didn’t help me but you might be more fortunate. If Whammel or Campion see this thread they will point you in the right direction.
Jane
Oops posted on the wrong thread - sorry
Jane,
You did well to resurrect this thread - as we so easily forget what has already been written. l do still take the D-Phenylalanine - and so to does the dog. Her joint problem has improved - without the need of surgery - l do put omega 3/glucosamine/green-lipped mussel - kelp - and her food already has a high vitd3 in it - Arden Grange Lamb and Rice. So something works well for her - possibly all of the supplements.
F.
where do you all get this d.phenylanine drug from and wat benefite has it given you using it alongside ldn
regards
lozzie
Lozzie,
l have had SPMS for 30yrs. There are no meds for this and if there was l would be very ‘choosy’ - as l have found many of the meds prescribed for ms - are not specifically for ms- usually they are for epilepsy/aids/bi-polar/Parkinsons etc.And have very nasty side-effects. But l do take lots of supplements to try to keep me fit and well. Because of the way l have to struggle to move about - l have messed up my good hip/leg/knee/back - abnormal wear and tear apparently. So l am always looking for ways of keeping myself as mobile as possible. l do take LDN - which l swear by. Also Sativex for musclepain and spasms/spasticity. Whenever l hear - usually from someone on this forum - about any supplements that have worked for them l add them to my ever growing list. Most of these l get via Amazon - seems to be the cheapest and quickest. l always look up as much info as l can beforehand.
My latest find is Spirulina which contains a lot of the supplements l already take - which cuts out the amount of pills l have to swallow - and all the ingredients are organic/natural - so of better quality then synthetically produced vitamins/minerals. lt even contains all the Bvits - calcium iron magnesium zinc vitc and lnositol. l shall still keep taking a highdose vitd3.
l never thought that what was my ‘good’ side would end up causing me more pain then my MS. But then ‘thats life’.
F.
The theory is that 500mg of DL-P twice per day will help keep your energy levels up throughout the day, but don’t expect anything spectacular. There is certainly nothing to lose by trying it out, unless of course you are pregnant, or have high blood pressure.
You can buy the stuff over the counter at most chemists (or online), so easy to obtain.
Hi
I’ve been taking LDN for 6 months on 4.5ml a day noticed an improvement in days especially with the bladder which is good as I was having to plan my trips around toilets…The last two weeks my mobility has been bad I got PPMS I was hoping that I wouldnt progress but I’m going to carry on taking it. I also take DL-P seams to be helping lifts the mood and helps with pain.
Does anyone take more than 4.5ml wonder if I should up the dose.
Sue
There are a few people that take a higher dose than 4.5ml, but you might get better results from taking less. Personally, I would try reverting back to 3ml and see if that improves your mobility.
It’s not the amount, but the dose you tolerate best that counts.