I am not a Ldn expert, not by any means. But I have some experience as I have been on it since 2014. AND I LOVE IT. I am so grateful for my Ldn. It got me out of bed. I was totally exhausted before Ldn. I have become a bit more like the one I was before.
On this blog I am writing about all things that have helped me. Plus some. I know a lot about thyroid issues. I have at least read a lot about it. I don’t know as much about Ldn. There are lots of studies today that I haven’t read. So this post is first and foremost meant to make people who don’t know about Ldn, aware of it. Tell you about how it works for me. And share some links to further info. It’s not for people who know a lot about it already. Of course, you are welcome to read.
OMG, I am so TIRED
In 2014, I was so fatigued. I didn’t have energy for anything but the bare necessities. I had been diagnosed with fibromyalgia, and it was a relief to have a name for it. Though I now think I was heading into a ME state. It’s difficult to make a distinction maybe. I hadn’t really thought about it, that I could suffer from something besides my Hashimotos. Because I was very used to aches and pains, ever since I was a child. I have had traumatic experiences that has lodged in my body. And I have PTSD as well. One becomes used to pain and tiredness. One survives. I believe many hypo will recognise this, at least I see a lot of people with thyroid issues in this situation. We live with low FT3, and become more and more reduced. One doesn’t know there are things one can do. Many are so sick they don’t have the initiative to do anything. That is why, it’s so sad our doctors are not able to help us. They don’t catch all these millions of people who are not well, or rather sick, and who could be so much better with relativly inexpencive and simple remedies. Optimal thyroid hormone levels, vitamins and minerals, maybe some Ldn. It doesn’t take that much.
Fibromyalgia
I was totally finished. I had to lie down a lot. I didn’t really sleep. I just lay there. Tried to not blame myself too much for all the things that didn’t get done. How I didn’t have energy for close relationships. The thought of having to say, “I am tired” all the time, deterred me. It was difficult to be social at all. I felt I couldn’t make dates, as I so often would be too tired . After I got a little better on Ldn, I learned to tell people, I easily tire, so might have to change our date. You know how it is, as one gets better, it is easier to tell others what is going on.
Fibromyalgia is a disease of aches and pains. One day here and the next there. And a lot of tiredness. One cannot take noise, or a lot of people. And then there are days where one believes one will come down with something. After a day or two , it clears up. That is quite unique for fibro, the influenza thing.
I am glad I got the fibromyalgia diagnoses. Because that made me start reading about it, and that led me to Ldn. On international sites, they talked a lot about Ldn. In Denmark, where I lived and live, there was no talk of it. It caught my interest right away. People said, I have gotten a new life. It can be hard in the beginning, but that eases up. I asked the rheumatologist I was seeing. She had never heard of it, but when she looked it up online, she got furious. That was not something we use here in Denmark! Medicine for substance abuse! No, no, no. She was old, but I hope she has gotten the memo, that it is one of the best remedies for fibro.
Because it really helps. I had a rough start. I don’t know if there were Fbgroups for Ldn at that time, I wasn’t on Facebook. But there were groups and sites online. I read, but never asked anything, or commented. People who know me might find that hard to believe, but nevertheless. I am so grateful for one particular comment. Someone, a lady, wrote, “Please, please, don’t stop even if it feels hard to begin with. I love my Ldn, and they will have to pry it out of my hands after I am dead.” That message stayed with me, and helped me in the moments when I wanted to give up. I felt so nauseous for several weeks. And had the typical nightmares. the nightmares subsided as I started dosing in the morning instead of at night. I had had to look abroad for my Ldn, to LDN Research Trust and Dickson Chemist in Scotland. Denmark is always way behind. At this time, Ldn was in use in Norway, my country of origin. But anyway, I contacted Ldn Research Trust. They told me, one can get sublingual Ldn. One just holds it in the mouth for uptake. They cost twice as much of course. They worked better. I bought those for several years. But then Brexit came , and I thought, better find another solution. I wish I had thought about that earlier. For in the meantime, Ldn had come to Denmark. Most GP’s have never heard of it. But there are pain clinics, and it is relatively easy to get a prescription at one of those. Here in Denmark we are many who use the 50 mg tablets which we dissolve in water. It is very easy and much cheaper. Here is how you do it:
Fillers & groups
I see in some American groups, there is a big debate on the fillers in the Ldn. Groupmembers apparantly react very badly to microcrystalline cellulose in the Ldn. It’s called Avicel. I have my doubts about this. I don’t know it it is something particular with this Avicel. But there is microcrystalline cellulose in most all supplements and medicines. It seems a bit exaggerated to me. Escpecially when people write, I don’t seem to react to MC in supplements, only in Ldn. But it might be right. You must find out for yourself, what is right for you.
The problem is, in the US they have a lot of options for Ldn. They can choose fillers. But in many parts of the world, we don’t have that many options. So I don’t want people to worry about that. But the LDN group I link to under, is very good in many ways. The admin there know much more about Ldn than I do.
What is cellulose? It’s a carbohydrate that we cannot digest, but many animals can. It’s good and necessary for our digestion. Now, I have had discussions about this in american groups. They claim, cellulose from trees is very different from that in vegetables. I don’t know about that. There are a lot of studies, saying MC is safe. Even when given in large doses to rats. We get mg in our Ldn and supplements. But if you feel, MC is bad for you, then avoid it of course. Though it’s very difficult to avoid it. It is everywhere.
This is not a topic at all in Scandinavia. I never see anyone mention the fillers. There is MC in my Ldn, and I have no issues with it. I think there are so many chemicals in everything in the US. If you google regulation of chemicals in cosmetics and food in the US versus EU, you will find, that there are literally thousands of fillers and additives that are prohibited in EU, that are allowed in the US. So I cannot help thinking, maybe worry about that.
It works! Hurrah!
Anyway, it started working! That feeling of everything is too much, started to abate. I started feeling more robust, the world wasn’t so daunting. For me personally, the effect on my fatigue is the biggest gain. I believe that is more Ldn’s influence on the immune system, more that the increased opiates. There are 2 isomers (same molecular formula, but different structures). One isomer seem to work on the immune system, the other on the opiate receptors. I think a weakend immune system plays a big role in all kinds of fatigue. I have still had pain, despite Ldn. But I see others who experience great pain relief. It might depend on the condition. I don’t honestly know it there have been studies on this.
But I feel so much stronger, and so much better, that it’s easier to live with the pain. I have less as well, but that didn’t happen in the beginning of taking Ldn, more in the last years. If I stop taking Ldn, I start feeling real bad. Real bad. After a few days. I have never stopped to stop, only in connection with medical procedures. That must be some abstinens as well. But I don’t plan to stop Ldn, so can’t really find out. I will never give up my Ldn. I don’t know if there will be long term negative effects. People in the groups say, “No, there are NO sideeffects”. When I say, chemical substances are never good for the liver and the kidneys, I have had people get mad at me. But it is true, it is always a strain on these organs to have to cleanse the shit out. But compared to the benefits, I believe these effects are minor. Plus, lots of people come off other medication once on Ldn.
How to take Ldn
I am not going to give a lot of directory. Like I wrote, I am not an expert. There are several ways of starting Ldn. When I started, the advice from Ldn Research Trust for me, was 0.5 mg a day, and a slow increase. I see that that is still the advice for fibromyalgia and Hashimotos. There are differerent protocols for different conditions. Today some people start on a higher dose, like 6 mg, and go down to a lower dose. They claim, that gives fewer sideeffects. This method is described in the Iodine Protocol group I link to under. It’s called “The Norwegian Method”. I believe they came up with this first in a Norwegian Ldn group.
I think it would best for most people to join a Ldn group, and ask for guidance. Even though one also get a lot of bad advice. of course. But it can be good to be able to ask others. If one sticks to what is in the files, I think you will be safe.
There is always a lot of talk about when to stop Ldn in connection with medical procedures. I find that there are a lot of exaggerations about this. The original directory from Ldn Research Trust was 48 hours. that is what I personally will adhere to. There has been one lady who didn’t get the effect from the anesthesia, that I have read about at least. There must have been something with her, because for most 48 hours will be enough. I have read as much as 7 days in one US Fb group. That is way too much. Many will feel so bad after 7 days abstinence, it will be detrimental to one’s health and well being. That’s how it is for me at least.
How long AFTER last opiod dose can I take Ldn again? That depends on what kind of opioid you have been taking. They say, by 5 half times the opioid is totally cleared from the body. As you can see from the table, the half times wary very much. When it comes to the anesthesia itself, better ask the doctor. I would think 48 hours would be enough for most opioid, except methadon. If you have had a long term opioid use, or abuse, then I think one must be more careful.
I am not giving any specific advice on this. Do your own research. That is best. I have had two operations ON Ldn, through ignorance and stupidity. And the anesthetic worked both times. BUT the second time, I was violently ill AFTER, when I woke up. I have decided to be very honest on my blog. You might learn as much from my mistakes as from my smart moves. Next time I will do 48 hours.
I have had an local anesthesia on Ldn. This was no fault of my own. I had taken my Ldn in the morning, and broke my arm in the afternoon. That also worked fine. I got a big dose, though. The older doctor remarked on that, to the young intern. But it might have been a blessing in disguise.
What if I am in pain?
I can take a Tramadol, synthetic morphin. I can take 50 mg in the evening after taking Ldn in the morning. I read that some can take it at the same time. This s not something I would do on a regular basis. But that’s just my opinion, and some may have such pain they have to. You can read more about it here, Brian Havilands Tramadol Info File.
I take very little painkillers, actually. I decided in my thirties, that I would try to avoid it. I have had so much pain, I would have to take painkillers every day. Paracetamol is an oxidant. I want anti-oxidants. In stead, I rub on muscle creams, I put on heating pads, I have a rest, I do restorative yoga, I meditate. And Boswellia. I started taking Boswellia 6 months ago. I am amased at the difference it has made. Usually in the winter, I use a lot of those muscle creams. I have rubbed on once or twice this winter! Recommended! It soothes joint, muscle and connective tissue pain, and it decreases elastase, an inflammatory agent that is elevated in us with fibromyalgia.
I have also been on the Iodine protocol this winter. That may have made a difference as well. You can read more on that here, The Iodine protocol.
Why take Ldn?
I guess I have already answered that. I only know about Hashimotos and fibromyalgia. Ldn is very good for those conditions. It brings the inflammatory response down. Many find that their Anti-Tpo is brought down on Ldn. Which is very important in terms of saving the thyroid. And feeling better. High activity in the immune system makes one tired. For the fatigue that goes hand in hand with fibro, it really makes a difference. I can only hope you try it and give it a proper chance. And that it will be as good for you as it is for me.
Har just beställt LDN 50 mg piller från USA.
Har ME, Fibromyalgi plus en del annat.
Måste få enegi i denna kropp som nu håller på att lägga utav totalt efter vaccinationer för Covid19. Det finns de som är mycket värre där an i sin ME, så egentligen skall jag vara glad att det gått så här länge(började min sjukdomsbana 1984). Men det här är inget liv!
Så nu hoppas jag att detta med LDN skall kunna ge mig lite livslust tillbaka. Det enda jag oroar mig för i dina texter är att det inte går att sluta med LDN. Är sedan årtionde tillbaka, förgiftad med seretoninhämare, som inte går att sluta med. Hade aldrig börjat om jag vetat det jag vet idag. Abstinens från helvetet vid minsta försök att sätta ut det. SÅ hur är det med LDN? Tänker börja mycket försiktigt, undrar dock vilken dos som man skall upp i?
Hei Barbro!
Jeg vet ikke hvor i mitt oppslag du leser at man ikke kan slutte med LDN. Selvfølgelig kan man slutte. Men jeg VIL ikke slutte. Når man har 2 døgns opphold i forbindelse med operasjoner ol, så slutter man brått. Så får jeg det dårligt. Men om jeg bestemte meg for å slutte, så ville jeg trappe ned over tid.
Jeg tror du kan slutte med SSRI også, hvis du gjør det over lang tid. Men begynn nå på LDN først, og når du er blitt stabil på det, så kan du tenke på det andre. Du bør melde deg inn i LDN grupper på FB. Jeg ser det er en som heter LDN Sverige. Ellers linker jeg til norske og en amerikansk LDN gruppe. Det er godt å ha en gruppe å be om råd i. Og du kan kanskje få tips om muligheter for LDN i Sverige. Ellers så er det en smerteklinikk her i Danmark, som behandeler på distanse. Arresødal smerteklinikk. Hvis du ikke er på FB så er det internettforummer.
Begynn langsomt og be andre om råd. Ikke gi opp selv om det er lite svårt i begynnelsen. Hvis du har lavt stoffskifte, så må du selvsagt ha gode stoffskiftenivåer, Optimale stoffskifteverdier.
Jeg har også fått covid vaksiner. Det har ikke gjort meg noe dårlig i det hele tatt. Jeg reagerte sterkt på vaksninen hver gang, og det tok jeg som et veldig godt tegn. At det er liv i mitt immunforsvar.
Jeg håper LDN vil være like godt for deg som det har vært for meg.
Blessings, Liv