Log in
LDN Research Trust
669 members905 posts

LDN

Hi

I am a 66 yesr old male and live in port elizabeth south africa and have battled with fibromyalgia for over 25 years..i have tried the usual drugs of choice lyrica and cymbalta etc but little has changed with nerve like pain throughout my body and head.

I have recently heard about LDN and would appreciate any feedback from people who have tried it

Thanks

Colin

19 Replies
oldestnewest

The LDN Trust has many testimonials on their website for Fibromyalgia patients (I'm on of them!). Here's a link to the search page, you will still need to type "Fibromyalgia" in the search bar. Happy listening!

ldnresearchtrust.org/ldn-vi...

Michelle

Reply

Hi Colin,

I used to live in Cape Town and now live in Windhoek, Namibia. I have had fibro for 35 years now grrrr. I have been taking LDN now for 6 years. It was prescribed by a doctor in Cape Town via a compounding pharmacy. The action is that when you take it at night it switches you feel good receptors off for a couple of hours. When you wake up these receptors will work overtime to producing more feel good hormones and reduce the pain. It is also supposed to prevent cancer and help many illnesses. However you cannot take opiods with it as it nullifies the action. I take Tramacet early in the morning and hope by the evening that it is out of my body. LDN also helped me sleeping a lot better, however for the first 10 days one has very lucid dreams, but that stops soon enough. I know nobody in Windhoek that has fibro so maybe you can message me back. My name Gisela

1 like
Reply

Hi Gisela

Thanks for your mail..it is great to hear from somebody who understands how FM takes over their whole life..i was in your wonderful city last October..we flew from PE fo JHB and then onto Windhoek where we hired a vehicle and toured around that wonderful country visiting Swartkopmunt and then up to Etosha ..a great holiday !

I am takng cannabis at the moment..have taken it in various forms for 9 months now..i take capsules before sleep to ensure i dont get the high effect..don't wanna be zonked the whole day !..

Anyway im not sure it is helping with the pain i get as soon as i open my eyes in the morning so i came across LDN whilst trawling the net (a fav pastime of mine)

Does it really help Gisela ? And what form to you take it ..powder /capsules and what strength ?

Im not sure if my doc will prescribe it ..im not sure if he will understand the correlation with FM...also will i get it in PE

I will be in CT in Jan ..so there might be more opportunity to find the LDN

Thanks again for the reply. .really appreciate it Gisela

Regards

Colin

Reply

Hi Colin, Great to hear from you. You could contact Dr. David Nye in Pinelands - he is the doctor where I get my LDN from. drsnye@gmail.com I do not know if the Cape Town compounding pharmacy makes the LDN, because I used to get it from the Free State. So do mention to him that you want the LDN - they automatically use 4.5mg in SA. I also take low dose Lithium Orotate (20mg per day am 10mg pm 10mg) which he also prescribes - check it out on the internet - Dr. Wright (he is passed on but you can still find info about him on the internet). I take a lot of supplements. Once you had an appointment with Dr Nye you then can get the LDN via courier.

Do you still work? I have a tourism marketing company here producing maps, books, websites etc. I am not that bad, but then I also pace myself. It really means no social life - but then I am a loner anyway. I am 67 years old and fibro got me shortly after the love of my life committed suicide. This was 35 years ago and I am well over it, except the fibro - had it half of my life - very sad.

I found that cannabis oil made me sleep very well. Never really tried it during the day for the pain. It has sooooo much potential for various diseases and health - I wish I could use it here. Grew my own but eventually I realised that my plants had no effect - bad seeds. Bought it whenever I could in Cape Town, but haven't been there this year - so no more. They said that they can send it by registered post, but I am a little bit scared of that. There is local stuff, but I have't tried it.

I use Tramacet (2 Tablets) in the morning and then Lyrica 150mg in the evening because it helps with the sleeping not the pain.

Keep in touch - have a splendid Sunday :). Regards Gisela

Reply

Hi Gisela..no i dont work anymore i worked for Cadbury for 25 years as the Management Accountant and then took a package in 2007 and was then lucky to get a job straight away with a small company in a General Manager role..the company took a bit of a dip in 2013 so voluntarily offered to leave and ease their overhead..they had been very good to me and i still do a bit of project work for them occasionally

I went to see my doc yesterday and he thinks it is a great idea to give the LDN a go..he is seeing a pain specialist colleague of his next Wednesday and wants to chat to him about how to go forward with the dispensing of the drug...i did drop a mail to your doc in CT and he said if i didn't come right i should see him in CT when i am there next year

So sorry to hear of the suicide of your man..did that maybe trigger the onset of FM ?

I had a whole load of stress in the early 90,s..my wife and i went through 3 GIFT operations to conceive a child and they were all unsuccessful. .my dad died whilst practising aerobatics and crashing his plane..and i was heavily involved in moving to new computer software at Cadbury and this was roughly when the FM kicked in

I have been having a bad time with the pain recently so have just taken 3 x 150 mg Lyrica to see if that will help

I can understand when you say that you are a bit of a loner..i also prefer my own company..it is so difficult to socialise when i am in so much pain

After 25 years of this FM i am trying not to hold up too much hope for the LDN..but who knows ?

Thanks for your support Gisela..appreciate it

Cheers

Colin

1 like
Reply

Hi Colin,

So I will answer your previous message now. Yes the suicide of Toddy was the trigger but I only realised this 23 years later. I also have moved house 33 times, 2 divorces and 2 financial crashes - one ended up in being insolvent. I also raised my 2 children most of the time alone - no easy task.

I recently came across Dan Neuffer - goggle him. Her apparently cured himself of fibromyalgia and has written a book plus one can contact him directly via Skype and he helps with the solution - needless to say it costs money. I am thinking of buying his book. The bit I have listened to him talks to my intellect and knowledge about fibromyalgia.

I am living in Namibia which is very cut off from the world. I would really appreciate if you could share anything new with me like what the pain specialist has to say and what he is putting you on. Lyrica only helps me sleep. I am on Tramacet x 2. I have had a vein op in my legs followed by a serious shoulder operation recently - all ops very very painful and I had to take Tramacet x2 x3 a day. It now no longer works for me. Friends from Germany have send me tablets with Enzymes (not digestive enzymes) and now I will see how that works, but not holding out too much hope. My pain levels have certainly got worse over the years and yours?

Try and enjoy your Sunday,

Kindest regards,

Gisela

Reply

hi gisela

just to let you know my gp has given me a script for LDN...the pharmacy has to order from CT...he has also included Glutathione as part of the script

Guess it will be Wed/Thursday before i get it

Just thought i would let you know

Hope all is well with you

Regards

Colin

1 like
Reply

Hi Colin,

Sorry I hadn't responded to your last message - we are reaching the busiest time of the year having to complete our book. I am particularly interested what you are paying for the Glutathione and why he prescribed it. I have read soooo much about it - it is brilliant stuff. It will stop you from aging haha. Seriously our production of Glutathione drops seriously as we age and is the master anti oxcident in our body. Please let me know because I am waiting for a consignment from CPT and maybe I can add it if it isn't too expensive. We have a particular problem here that we are not allowed to courier medicine into this country - so we always have to find a mule to bring it in via air transport. We are all patients of the same doctor in Cape Town.

Kindest regards,

Gisela

Reply

hi gisela

my gp spoke to a pain specialist here in PE a dr ernest buitendag who spent some years in Canada practising pain management...i have seen seen him a couple of years ago and he told me pain management is :

drugs 15%

alternative medicine 15%

YOU..............70%

and i beleive him

i think mindfullness is great..but i think you have to be very disciplined...which unfortunately i am not...i have meditation on my ipod which i do from time to time and i also go to yoga classes twice a week

the LDN is R280.75 and the Glutathione Plus R225.72 both 30 capsules incl VAT

The Glutathione will be amazing if it stops me from ageing..i already have a head like a billiard ball and my skin is starting to sag :

Having a painful day today....but gotta keep my mind strong....fuck this FM....it will not defeat me

Regards

Colin

Reply

Hi Colin,

URGENT:

Your response never reached me - thanx for answering. I thought about you this morning at 6.00 am when I was walking my three dogs . My LDN ran out about 5 days ago and it will only arrive on the 8 Dec by mule! I can now tell you with certainty that it works for pain as well. I am riddled with pain everywhere in my body - walking the dogs was a real struggle. Maybe Tramacet is not working either anymore. Took 40mg of Cortisone but nothing is helping. I finally understand why people end up in bed, but I couldn't be in bed.

My doctor in Cape Town says one gets the Glutathione only in injections and IV. Please tell me most urgently where did you get tabletscapsules? Maybe we can still include it in my consignment via mule .

I am leaving tomorrow morning early for Swakopmund, but I have an assistant who will let me know if you have answered.

I have aged quite well and worked out eventually why. All my siblings are all shrivelled up and I wondered why not me - so it wasn't the genes. I also smoked a lot in my life. I started taking Vit C in my early 20 and still do and I have very few wrinkles. Have decided to have my hair grey now as it is the new fashion colour!!! Typical women :).

I hope to hear from you.

Reply

Hi Gisela..thanks for mail. ..i am still waiting for my LDN to arrive. .apparently tomorrow is D day..like you i have been battling with the pain for the past week or so and am putting a lot of faith in the LDN taking away a lot of the pain...maybe not too smart after all these years but i gotta sneaky feeling . Time will tell ☺

I was in the pharmacy who is ordering the LDN (apparently it is coming from Joburg) that the Glutathione is no longer available anywhere in SA. .not sure why...will ask her tomorrow. .so maybe i gotta make do with my 30 capsules (already taken about 7)..so i guess you got it spot on it only being available as an injection or iv ?

Good to hear you have not succumbed to the harshness of ageing. .you probably fighting off the attention of lots of guys..younger ones as well...😆

Anyway hang in there Gisela ..thanks for keeping in touch

Colin

Reply

Hi Colin,

Thanks for coming back so quickly with the bad news :). Hmmm I have been taking LDN for maybe 9 years and remember that it was the sleeping benefit that was left in my memory and not the pain reduction. I also have to admit that fibro is definitely a progressive autoimmune sickness and maybe that is why I suddenly feel all that pain - it isn't fair. I have always been organized and order early, but there was just no mule from Namibia.

I have only just grown up and still have so many plans where I need the energy, brain and flexibility. Do you also suffer from brain fog? I suffer a lot from that and seriously think at times that I have early Alzheimer.

Please remember the vivid dreams initially when taking LDN and do not give up too soon.

I will catch up with you once I am back from Swakopmund - need to complete the month end now.

Kindest regards,

Gisela

Reply

Colin, sorry to butt in on your post but there is something that both of you may find helpful, A.L.A or Alpha Lipotic Acid which is easily available from Amazon, or health food shops. Very good results with fibro, neuropathic pain, etc if you type in to google or search engine may be worth you looking at. Best wishes from England!. x x

Reply

Hi Badger...you are not butting in..thanks for your mail and suggestion !

Have you tried the ALA and has it been beneficial to you for nerve like neuropathic pain ?...i am not a diabetic so that is not one of my problems..do you take LDN and has it been a success ?..i am receiving my first monthly supply today.

Thanks again from a sunny 26 c Port Elizabeth (sorry maybe i shouldn't have mentioned that 😎)...Colin

Reply

Hi Colin,

Just checking how you are getting on with the LDN? Have you noticed any difference?

ALA is really good stuff - also assists in prevention of Alzheimer . Good for the lungs and I have forgotten the rest due to fibro fog :).

Reply

Hi Gisela

Thanks for your mail. .it is great to know that someone is interested in my journey with ldn

I have been taking it for just over a week and if anything my health is worse...i was awake this morning at 3am and felt lousy. .didn't know what to do with myself. .i took 3 x 150 lyrica one shot and that kinda spaced me out so i could be nearly normal...can ldn be like that ..it gets worse before it gets better?

When i takeit. .it has a really strong taste in my mouth?

I think i shud give the ala a try as well...is it reasonable price ?

I will continue wirh the ldn..u gotta give it a chance

Thanks for your support Gisela

Colin

Reply

Hi Colin,

I do not know anybody who has fibro here in Namibia. I lived for 40 years in Cape Town so that makes you one of my countrymen :). Ultimately when I can no longer work I will move to Plettenberg Bay - those are the plans. My son lives there and my daughter lives in Cape Town Hout Bay. My son and I have been together in business now for 20 years. He is setting up a new business in Plett.

How does your LDN come - in capsule or compressed tablet? Why should it give you a taste? I just swallow my capsule down the hatch and that is it. I know some people couldn't take it at night - you are taking it at night? They then take it in the morning and it works better for them, however the action of shutting off your "feel good" receptors happens at night. Hang in there and give it a good chance to work. What strength are you on? If it will work for you it ultimately also slows down you symptoms from progressing - and yes I am talking about pain as well. I have been taking it for 7 years.

I only take one Lyrica 150mg at night, because without it I just do not sleep. I cannot say it helps with the pain - now I am tempted to try 2 and see if it reduces my pain. Have you tried Tramacet? I read somewhere that Lyrica will ultimately cause Alzheimer and my brain is foggy enough. Tried to go off Lyrica - down to 25mg, but just couldnt sleep without that. My pain levels are through the roof at the moment - don't know why.

The ALA stands for Alpha Lipoic Acid.

Reply

Hi Gisela

I am taking 4.5mg tablet (not capsule)..i have been taking for a month now and no improvement. .how long do you think i should carry on ..my nerve pain is bad at the moment. .i cant feel my feet and the pins and needles is coming up and beyond my ankles and the top of my head is so sore..

Sorry for the moaning about my old body...

Im thinking about starting a gym contract. .starting really slow (im doing yoga at present )..at least it will get me outta the house and thinking about the pain. .wot do u think?

Happy New Year btw !!!

Hope you are doing better than me !

The Glutathione is available again. .

Thats all for now

Regards

Colin

Reply

Hi Colin,

Happy New Year -I feel guilty saying that when you are in sooo much pain with no solution. I just want to find out- you are not diabetic are you? Have you had that checked? That dreaded disease causes nerve pain. I do not have nerve pain per se. I thought I had it in my hands but then both my hands /wrists have carpel tunnel which needs an operation - what a relief to know this. I was in the dark about this for 22 years.

LDN prevents/helps a lot of chronic diseases like cancer, Parkinsons, MS etc and that is the reason why I take it. We don't need another disease on top of fibro. It also slows down the progression of diseases. I feel it helps with my sleep. When I was without it for a week recently I definitely felt more pain.

Why does the top of your head hurt??? Have you tried a TENS machine for your feet to improve circulation? Have you tried taking Tramacet? I do very well with it 2 tabs. Cannot stand Tramadol - yuck. Recently my good knee started hurting badly and my surgeon prescribed Vimovo. I am in a really good place with Tramacet and Vimovo - I know my liver is taking a beating and I will check it soon. However I wanted to enjoy my so-called holidays. I walk fast every morning with my three dogs for an hour in the bush and that is all the exercise I can handle - the pain then sets in. So I don't know about gym. I have been a gym bunny all my life but I cannot do it anymore. What about Thai Chi? Its slow and is connected to mindfulness? It has so many benefits - that would be the exercise I would do now - if my shoulders wouldn't hurt so much. Yoga also has so many benefits - join a yoga class in order to get out of the house. What about swimming?

By the way the sick feeling you had at the beginning was the Glutahione as it is a big detoxer - in fact the master detoxer of your body. Are you still taking it? How can I get hold of it? What was the price again? CAn't your doctor prescribe it for me?

Looking forward to hearing from you.

Kindest regards,

Gisela

Reply

You may also like...