I was on it for 8.5 months at 4mg. Stopped it when my symptoms returned. Suddenly the LDN stopped working. Took a 3.5 week break and restarted. Felt improvement at 1mg, continued to titrate hoping to get to 3. Got to 2.5 and there was no improvement like there was at 1mg. Dr said to go back down to 1mg. Have been on that dose for the last 5 days and there hasn’t been any improvement at all. Last night I had bad insomnia and today symptoms are worse. Wondering if i should lower to 0.5 or try skipping a dose(s). At my wits end and don’t know what to do.
I sympathize but I would guess that no-one really knows the answer to why it might "stop working". its a pretty experimental medication in these kind of off-label uses - and one that interacts with the immune system which is a quite poorly understood system at the moment.
generally, its mechanism of action is very slow taking weeks to build up though - so I would say it might be worth giving it longer at any dose to try to figure out the effects.
so far in my case, it seems to make things worse for a few weeks each time i step the dose - before gradually settling down.
this seems normal / as expected as everything I have read leads me to think of it as a supporting therapy rather than anything that on its own is going to get rid of lyme - for instance
so it perfectly possible for an underlying infection to flare up or other health conditions to arise whilst taking LDN - so there is, of course, the possibility to find those two things confounding each other.
i guess all you can do is discuss these possibilities with your prescribing MD and make a decision as to what to do from there.
sorry, i cant be of more help - nothing with Lyme is simple eh?