Low Dose Naltrexone (LDN)

another minor update
day 9 since upping the dose to 1mg taken 1st thing in the am.*

i should say upfront that it's hard to pick any of this apart from the usual fluctuation in symptoms that come with this illness.

I have continued to feel a bit extra achy and knocked about in the mornings - although a bit less than in the first week since changing the dose, so seems to be leveling out.
that's also what seemed to happen when first starting at 0.5mg - so gives me a little more confidence that it's a consistent pattern - rather than just the random nature of Lyme.

it's not severe - would not want it any stronger - but it is tolerable - it just makes it harder to get going and get anything done much before 11am - but this is just a degree of change to a symptom I have had since getting ill 5+ years ago.
mild to moderate increase in headaches that i had in the first week also seems to be fading back to the prior background level - so again no great shakes there.

on the plus side, my walking has either stayed the same as before the start of LDN or improved ( faster over the same distance)
and my weights/exercise ( i'm doing every 3rd day at the moment ) has continued to improve over the same time.
I seem to be able to do a little more stuff in a day despite the slower mornings - which is very welcome.

so overall its early days yet - but apart from some tolerable aching, etc at this point, no major downsides, and overall progress is continuing - plan to increase again after around 14 days at this dose.

will update again after that point
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*note
i should also point out that this is not a stand-alone therapy - but from my research is best if used in conjunction with other approaches - eg interventions for overall health, the immune function, and antimicrobials (ABX or Herbal)
in my case, this is:
-overall health: Diet and lifestyle interventions ( Keto-Paleo Diet, exercise, sleep, stress management)
-Immune function: A comprehensive Buhner Lyme protocol - per his last book
-Antimicrobials: A number of anti-coinfection Herbs in tincture form( Sida, Alchornea, Cryptolepis, Houtt, Teasel)

I have tried to keep the overall protocol stable so I can understand what symptoms changes if any are attributable to the LDN.

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.

If your on facebook you may want to join the LDN group. Lots of helpful advice on it. Some people dose even twice a day.

HeartsinPain said...
Good luck! I took it for two years and loved it. My LLMD started me at 4.5mg which did give me side effects like throwing up and feeling drunk but it passed after a few weeks. I’d say it took a month or two to kick in. Let us all know what you think.

Oh my gosh HIP - no wonder you had side effects - you are supposed to titrate up, not start at 4.5 lol
I've been on LDN off and on for years - the reason for off and on is that I plateau after 6-8 months on it and there is no where to go but up, which you can't. So I stop and start again several months later. Apparently this isn't unusual. It works wonders

Ko7: how long have you been on it for and how many times have you skipped doses? I’m debating whether to try skipping a dose or 2 or try titrating to 1.5. I been taking it for the past 3 weeks.

v brief update as only a few days since last dose change

1.5mg taken 1st thing going OK so far - 4th day at this dose today
some disturbed sleep - (even from taking it in the AM = odd)
bit slowed down and extra achey in the first part of the day
otherwise OK

will report back in a couple of weeks

sunfun - it doesn't work like a standard medication does - instead it gradually tricks your brain to make more endogenous opioids over time by temporarily depressing the opioid production once a day - which your body reacts to over time by gradually ramping up the production of its opioids.

hence it's normal to take a long time to get positive results - this can be months in chronic illnesses like lyme disease.

in the interim, it's common to have mostly adverse effects - those with Lyme and auto-immune diseases may have more trouble tolerating doses and have to work up slowly due to these effects - buts its a kind of no pain no gain scenario.

i would say go back to whatever dose you were able to tolerate and stay at that for 3-4weeks to let everything stabilize then try stepping up by another 0.5mg per day and stay at that for 3-4 weeks again - and so on until you reach 4 or 4.5mg.

adverse effects such as herx like reactions or fatigue are common and are actually a good indication that you stand to benefit in the long run - but the more of this you experience the slower you should go.

at least this is what i have gleaned from

https://ldnresearchtrust.org/

which seems to be the most reliable information I can find on LDN

another week another update - still on 2mg taken 1st thing in the AM

some odd things have been happening this week...
basically more disturbed sleep and more of the fleeting pains all around my body - especially in arms and legs - sometimes fingers and toes.

I have also had two or 3 very uncomfortable nights - on the border of what is tolerable - certainly over what is tolerable if it was every night.
I can only describe it as overall discomfort and pain - a kind of continuous aching and sensitivity to any pressure at all - eg from one leg resting on the other or even from the weight of the limb against the mattress.

the days are not anything like as bad - just the fleeting pains thing - and a few days where i have woken up very groggy and been below parr for most of the day.

most days though I still feel like overall I am moving in the right direction - energy still v good, activity levels higher than they have been since getting ill. exercises still improving in the number of reps etc so it's not all bad. Perhaps just a small hiatus due to the bad nights.

I don't know exactly what the cause of these adverse symptoms is.
it is a well-known side effect of LDN - that people can feel worse for anything up to 6 months before getting benefits - especially for those with Auto-immune diseases like Hashimotos, also people with Lyme, and also people with CFS.
I have all 3 so perhaps it is to be expected.
also, getting this kind of adverse reaction is associated with benefiting in the long term so it seems like you may just get over the hump to get the benefits.

at the moment I am going to see if these reactions subside if I keep to the 2mg dose for another week or so and will report back.

This is great news Garzie, following this closely. I never got over the hump, but may give it another go given your success.

It's very good for suppressing microglial activation, which means it may be beneficial for certain types of "gain of function" NMDA receptor nerve damage, which I'm starting to suspect may be tertiary-order problem of mine...

Did you have any joint pain from it garzie? If so how long did it take to pass? I got headaches and an out of it feeling almsot immediately. At the 10 day point i started getting joint pain and quit.

Also, anyone know if you can drink alcohol on it? I've read mixed things

I’ve had 1-2 drinks and have been fine.

I’m still taking quite a few breaks on LDN as I’m dealing with some weird stiff neck pain & headaches. I had it a few weeks ago and it seemed to get better then was bad again last night. Very hard to sleep. Not sure if it’s the LDN or perhaps the new topicals I’ve been prescribed for rosacea.

I do notice I really get a lot done when I take LDN. I’ve also been able to up my dose to 1 mg without any numbness (still taking morning). This could also be the cause of neck pain.

Everything is always worse for me at night. Strange pains, restless leg, trouble sleeping,etc. I also feel like things are heavy -even my head at times.

Garzie - glad to hear that things are moving in a good direction!

1000Daisies,

Thank you so much for this update! This is really encouraging as I agree, a lot of your posts I could really relate to as well.

It's interesting that you mention NAD IV's because there are a couple of clinics around me that do these and I've been thinking about trying them. How often have you been doing them?

Also, what enzymes are you taking? I just started taking orthomolecular digestive enzymes this week and they seem to helping a little with my digestion.

Would you consider yourself pretty much back to normal at this point now?

Due an update so here goes
Been at 2.25mg a day 1st thing for 2 weeks and things were reasonably settled so decided to step up again by 0.25mg to 2.5mg 2 days ago
As has happened the previous times when I upped the dose, this has resulted in a change to my sleep with more disturbed nights with all over discomfort, rapid heart rate and pain in arms and legs – but more manageable than when I stepped the dose 0.5mg at a time
The gains I have made to productivity and physical performance have continued and become more consistent.
I documented some quantitative measures of this on another post here so will add that below in case it helps others get some sense of scale of the improvements. Still small steps but continuing.
i use objective measures like - how fast can I walk over a set course ( i walk each day)
how many weights can i lift how many times ( started strength training a few months ago as part of my treatment) - how much sleep did i get - how many chores did i do that day - those kinds of things that are not subjective. Profound Fatigue was my most pronounced symptom so these are useful measures for me.

in the 20 days prior to starting LDN - on average, i was able to walk a fixed 2.7mile course in 37:30
in the last 10-20 days, I have been able to walk it on average at 35:30 and do not feel the old laden down with sandbags feeling most days anymore.

similarly - before starting the LDN i was able to do 11 tasks a day on average ( just routine chores like cooking a meal, putting the rubbish out, exercises, preparing tinctures - that kind of thing)
in the last 2 weeks on LDN this has increased to an average of 14 tasks a day - but up to 17 some days

i am doing a lot of other things as well though - detailed on the other threads - and was improving very gradually before starting the LDN - so I cannot say with certainty which is really making the biggest difference - but i do feel a step since starting the LDN and plan to continue as you mention - towards a target of 4.5mg / day