LDN swollen glands, sore joints and PEM

[Kahikatea]

Hi, I'm looking for advice from anyone who has tried LDN for M.E./ CFS and has experienced such side effects. My twenty year old has been taking LDN for about one month. He has experimented with different very-low-doses of 0.1mg to 0.5mg. His worst M.E. symptom is chronic and extreme insomnia (he doesn't sleep night or day without sleep meds) and the typical tiredness/ lack of energy. The 0.1mg dose of LDN seemed as though it helped a bit with sleep. He needed to take half a Zopiclone to get off to sleep, but then he slept better than usual. However, when he tried to do anything slightly energy consumptive during the day, such as 10 minutes of Qigong or a 10 minute conversation, he would suffer unusual PEM the next day as well as slightly swollen glands. He then tried to go to 0.5mg but the gland problem became worse and also the feeling of sore joints. I haven't heard of LDN causing swollen glands but this seems to be a typical immune response for my son when things are not going well or overly stimulated.
I read on one of Cort's Health Rising research posts that LDN can be immune stimulating at very low doses but immune balancing at higher doses and, therefore, it can be worthwhile to try 4.5mg first and then titrate down from there if necessary. We are considering this but are nervous as we don't want to exacerbate symptoms or make his sleep issues worse.
Any clues or similar experiences much appreciated!

 

[Gitfiddle]

I read on one of Cort's Health Rising research posts that LDN can be immune stimulating at very low doses but immune balancing at higher doses and, therefore, it can be worthwhile to try 4.5mg first and then titrate down from there if necessary. We are considering this but are nervous as we don't want to exacerbate symptoms or make his sleep issues worse.
Any clues or similar experiences much appreciated!

@Kahikatea hello.

I’ve been on LDN for 10 years for ME/CFS - for me it has helped immensely with pain and somewhat with sleep and mood. I’ve only tried going off twice and both times I felt much worse after about 4 days so I reinstated.

I’ve experimented with different doses ranging from .5 mg up to 4 mg. and am currently on 3 mg. I was on 1 mg for years. Side effects were minor and short lived but it’s been so long I’ve forgotten what they were now.

Everyone reacts differently to LDN - for some it’s a godsend, for others it doesn’t help. But my advice would be to definitely NOT start at 4.5 and work backwards. That is not recommended for ME/CFS.
Start low and increase slowly. If it helps, there will be a sweet spot that’s different for everyone. Too much too soon can sabotage the effort. LDN Research Trust was very helpful for me when I first started. Here’s their prescriber information sheet.
Best wishes to your son!

https://ldnresearchtrust.org/sites/default/files/2024-02/Dosing-Guide-2024.pdf

 

[Kahikatea]

I’ve been on LDN for 10 years for ME/CFS - for me it has helped immensely with pain and somewhat with sleep and mood. I’ve only tried going off twice and both times I felt much worse after about 4 days so I reinstated.

Thank you. Unfortunately, the LDN gave my son extreme constipation so he has had to come off it. It's a shame because it was helping with his sleep but also gave him a strange disconnected and spaced-out feeling that he wasn't enjoying. I wonder if he would have got these symptoms on the higher dose of 4.5 mg. He tried absolutely everything for the constipation and nothing helped so it seems too risky to try the 4.5 mg. Thanks again for responding.