Last reply 4 years ago
LDN Low Dose Naltrexone

Has anyone had experience of this drug good or bad I am about to start it. Taking the dietary regime as part of this valuable treatment. I can not get it on NHS- I will not start with my rant about that save it for another day. It would be valuable to hear experiences of others?

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shtanto
4 years ago

Hi Ziva,

Have a look for Linda Elsegood. LDN is what I take for MS, 5 years going now, same as Linda who has been taking it for years. She runs a research charity to get the drug funded and researched. It should be cheap. There’s a chemist up in Scotland by the name of Stephen Dickson who can hook you up. Start at 1.5mg, take that for 3 or 4 weeks and keep upping your dose by 1.5mg until you get to 4.5mg. If 4.5mg is too much for you, drop back to 3mg.

I’m surprised the NHS is being douchey about it. Linda can help. To the Google!

Talk soon,
Eoghan


tiggermum
4 years ago

Hi there @ziva. I take this drug – from the pharmacy in Scotland – prescribed by e-med. That is the only way I can get it. It interacts with my thyroxine but I manage to work it out. My GP is not overly happy but he isnt the one who needs help!

I find that this drug helps me sleep. Sometimes too long, but the rest is good for me. So, good luck and keep us posted, and as @shtanto says, check Linda’s site.


ned
4 years ago

Hi Ziva. I have been taking LDN for about two years, at first It did help but now it does’nt seem to be helping. When my current supply is finished I will not continue. Ned.


ziva
4 years ago

Thanks for the comments – it is really helpful to have all your comments good and bad. I just feel its worth giving it a try- don’t think I have anything to lose. Fed up with using medication that was not particularly for MS that make so no difference other than make me lose my marbles.


janharke
4 years ago

If you can’t get the LDN in your country, you can buy it in lsrael: https://www.buyldn.com, as I did several times. Now I get the LDN for free in the Netherlands. But, build.com is safe and you will receive it in a day or two/three.


janharke
4 years ago

Forgotten to mention: you don’t need a prescription (recept) from your doctor.


ziva
4 years ago

Thanks very much thats good to know – glad to know that so many people are using it!


seenjo11
4 years ago

i’ve been using it for a little over two years now. started at 3.0mg and after 7 months went to 4.5mg…which is where i am now. happy with it. reduces the spasticity in my left leg at bed…which is the only time it ‘acts out’ anyway. more restful sleep as well. make sure you find a company that compounds it correctly. best. sean


cazz
4 years ago

I was diagnosed with rapidly evolving servere RRMS in 2010, my neuro told me I should start on Tysabri as soon as possible. He said it was the best thing for it out there at the moment, if I did’nt I would end up in a wheelchair within the year. After much research into Tysabri and other medications I refused the Tysabri and I have been taking LDN ever since, I get it via E-med’s online and they send my prescriptions to Dicksons pharmacy in Glasgow. It’s all very easy and get delivered to my door every month. I was a state having relapse after relapse, taking LDN is the best decision I ever made, I’m doing really well these days, I have blogged my journey on the LDN research trust website in the forum section for MS so have many others, if you would like to discuss it with me or needs any advice about LDN I’m happy to offer my support along with many others on the website http://www.ldnresearchtrust.org I think that’s the web address and Linda does a great job in helping with any advice and issues concerning LDN if you haven’t already done so check it out
Good luck
Caz xx


ziva
4 years ago

Thanks for explaining your experiences, I can’t tell you how much hope I have now that I didn’t have before. I would just like to be able to improve my mobility which seems to have taken a Plunge downwards. It’s almost like I can put up with the pain as it is intermittent and variable. Well actually there are some that never change and are constant. I was at the Pain Clinic last week and the very helpful consultant said that there was not much available for me except opiates, which I don’t want to start as you can’t take them with LDN. But I use mindfulness meditation which does help.
I’ve been told by the doctor who is prescribing it for me that there are some things thatLDN cannot improve-bladder function problems which are complex and long-standing numbness in my feet.
Anyway I’m just keen to start it which hopefully Will be next week! But in the meantime thank you for all your stories, it is very helpful unsupportive. I’m going onto the website that you mentioned Cazz,
Thanks again

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