u/ermisenda

Hi everyone. 34F Australian with mild ME/CFS caused by blood cancer in my early 20s. I went into remission but ended up with long term chronic fatigue that wouldn't go away. I learned about low dose naltrexone on my own and asked my GP to trial it 8 years into my remission. And it worked at 1.5mg but I felt worse at 3mg so I stayed at 1.5mg. I almost immediately felt an improvement and energy increase, so I went from evening to morning doses.

After 2 years of trying to increase my dose but struggling to get past 2mg, I started taking a second dose at lunch. This helped a lot. I then took a third dose in the day, this also helped more. I became pregnant with my first child so I stopped experimenting until I was postpartum. For the last 10 months, I have been taking my 2mg dose about every 1.5-2 hours. So I'm taking about 6 doses a day, every day (so total about 12mg split through the day).

I came across this idea organically (I felt better so I kept going) and then I read about a woman with ME/CFS taking her LDN every hour. She claims that she did this for a long time and now no longer needs her LDN. I read her replies on the Health Rising blog. She speaks of calcium channels being cleared or something when we take LDN or take caffeine.

Anyway, I can't seem to find many people discussing this way of taking LDN. I read on Reddit of a woman with ME/CFS seeing a specialist in North America and being encouraged to slowly titrate her LDN to 50mg a day and then trying Abilify. I guess theoreticay I am on my way to increasing how much LDN my body takes a day (from LDN to normal naltrexone dose).

Does anyone else do this? Has anyone else heard of this? I have seen posts of people taking LDN twice a day but not 3+ times a day.

I want to trial more ME/CFS medications (such as the nictoine patch or Mestinon or low dose rapamycin or microdosing GLP1) once I'm done breastfeeding. But I'm shocked by how much this strange LDN protocol is helping me. Anyone else???