29 posts Page 2 of 3
After all these months of researching and wondering how to begin LDN I finally have a bottle of it on my desk - quite hard to believe I'm starting treatment tonight!

90 x 4.5mg capsules = $105 NZ - so $420 per year compared to $30,000 NZ apparently for the "other" drugs that I don't (gratefully) qualify for. It is no surprise then that the drug companies are quite keen for LDN to not be widely known and for their treatments to be successful.

I'll update this post with any side-effects, good or bad just in case anyone else is considering LDN and wants some info.

Fortunately I do not have a big list of symptoms and the ones I do have are mild. It is just that the MRI I had 2 years ago at diagnosis showed quite a lot of lesions (I'm not sure how many as I didn't know that was a question to ask at the time as I didn't know much about MS) so I am very keen to undo ALL symptoms and repair all of that myelin.

-Tingy right thumb/forefinger - 2.5 years continuous (this was reason I discovered I had MS)
- Balance issues (drop things alot, slip over/downstairs)
- Very dizzy when suddenly move head
- Strange eye sensation when overheat/exercise
- Continual fatigue despite 8-9 hours of good sleep each night
- Memory not so good
- Bladder issues
I found LDN helped with my bladder and calf muscle spasticity issues on the very first night. You are starting at 4.5? Usually they work you up to that dosage, be careful with possible sleepwalking and VERY vivid dreams, so real you'd think it was an out of body experience or something. Glad to hear you found an alternative and I know it is I'll go well for you. Best wishes
Thank you!

I did say to the doctor "shall I break the capsule in half for the first week or two?" as all accounts I had read worked up to 4.5mg also - with some people stopping once they reached 3.5-4mg. He was surprised and thought 4.5mg must be fine (seeing as people take the 50mg tablet). As he only has 1 patient on LDN I figured maybe I've read more than he has so might open the capsule and tip a little out for the first week perhaps as the sleepwalking and dreams seem a bit frightening!
I don't think you are able to get an accurate measure by breaking the capsule in half as they are usually made up containing a "filler" - mine contains "avicel" as well as naltrexone.

Suggest that you firstly go to http://www.ldnresearchtrust.org where there is lots of info concerning LDN including recommended initial doses.

I have been taking LDN for almost 7 years and truly believe that it has stopped progression of my SPMS as well as improving or resolving many of my symptoms.

Best wishes,
Diz
Thanks Dizzy, it is great to hear another positive account - I have read a few really positive stories on the forum of the website you mention which was in part the reason I wished to start LDN.

I did worry about just tipping some of the capsule out - as you say I could very easily tip out mostly filler or Naltrexone and then the next day do the opposite! I had considered manually correcting the prescription to 3.5mg but figured this might not be acceptable for patients to self-adjust prescriptions! I think the doctor was figuring that if 50mg is fine for people (albeit heroin addicts) then less than 1/10th of that dose must be fine.

Oh well, if the worse case scenario of starting at the maximum dose is some vivid dreaming I can live with that!
It has been two months now since I began LDN (4.5mg per night from the beginning) so thought I'd post a little update.

My main MS symptom (thankfully) has been 2.5 years of a numb thumb/forefinger (also fatigue, optic neuritis etc but the numbness has been ongoing, never subsiding even for a minute during this 2.5 years whereas the other things are on/off). After 2 months on LDN the numbness that has been a 9/10 all of this time has reduced to probably a 3/10 over the last 3 weeks!! I'm so excited as the numbness is a constant reminder I have MS ie. none of the relapsing/remitting that I hear about. I think bladder urgency issues might also be improving.

This could be due to other things ie. the OMS diet I have been following for 2 years now or the Transcendental Meditation I have been doing for a month but I'm sure the timing means LDN has been a help in a small or maybe large way.

There have been no side effects at all so for those that other medications are not an option it might be worth giving LDN a try.
I'm a little late joining this conversation ;) but I was wondering if you could say whether you actually saw a Doc for the LDN and what your experience has been regarding this low dose drug? Many thanks.
Hi all i too have been on it for about 2 months. I thought it helped my bladder initially but it hasn't unfortunately.

I began on 3 mg then to 4mg. I will still give it a good go and when my tabs are used i will go up to 4.5 and give that a good go before conceeding i maybe in the group it doesn't help. yay for those it is helping tho!

My primary GP would have prescribed it but he was not authorised to under NZ Medical Authority. My integrative GP Frances Pitsilis was happy to do so.

I have been seeing her for ages and i should have asked for it long ago.

I hope you can find someone to prescribe it for u.
Dx 1992 OMS 25-2-09
Thanks for that. I have found a couple of docs in my area who are familiar with LDN and its use for various autoimmune diseases. I saw somewhere that it can take quite some time to find your sweet spot where the drug works best and that following a gut health diet alongside will enhance the effects.
Interesting thanks
Dx 1992 OMS 25-2-09
29 posts Page 2 of 3

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