Anyone use LDN?

My doctor mentioned LDN for Lyme disease (not my LLMD, just my family doc).

Has anyone tried this or have opinions of it?

I've read mixed reviews..

I really liked LDN - Low Dose Naltrexone. At high doses it is given to opiod addicts during withdrawal to calm the neuro affects of the addiction. At low doses it's found to have the same effect on typical neuro sx and can also boost immune function.

The primary issue with it is that it can take your body some time to acclimate to it and work up to optimal doses. Literally, a few months and some people aren't able to tolerate sx (for some it can exacerbate sx).

And part of that problem is that MDs start people on too high a dose.
I was able to push through that and used it for a good year.

Do a search on the forum - we've had quite a few discussions on it.

-p

I attempted LDN several weeks ago. Within 10 minutes of taking 2mg, my tinnitus went into overdrive. I woke up about a thousand times during the night (I usually sleep straight through). My head pressure and visual anomalies increased and acid reflux kicked in. Having read that it can be rough in the beginning, I stayed on it for 10 days. That's all I could take. I quit. I may try again but at a much lower dose.

(In LDN's defense, I did start taking it the week of the full moon and PMS (a crappy combo that usually causes a few problems). So while the tinnitus was instant and certainly attributable to the LDN, the other issues may have had other catalysts or been a combo effect.)

tried it, did nothing for me at all

went up to 4.5mg it did nothing for me.

Based on my records, I had my biggest jump in wellness from 87% to 97% while on LDN. I was also on MC-BB2 and hemp oil, but the constant was LDN as the others stopped and started during that 9 month period. I was plateaued for about 4 months prior to that.

I went from 3.5 to 4 to 4.5mg every 3 months.

I actually mean to ask my LLMD if its something we should try again this go around.

I did have some vivid dreams for a few weeks, but it didn't bother sleep quality for me.

Jason

Post Edited (JasonSinis) : 10/17/2017 11:59:36 AM (GMT-6)

Rikky1 said...
this thread is typical of any thread that asks How Did X Work For You in this world of lyme and co-infections.

Lyme and co-infections and its effect on someone is so individualized it's almost silly to even ask people what their experiences are as that has little bearing on your own response. Alas we'd like a higher percentage of success to help drive decisions and that makes sense but in the end you are unique as is your response.

I understand and agree to some extent, but if everyone tells me it didn't help, or brings up studies that prove it is ineffective against Lyme and co's then I can cross it off my list to save myself time, money, and more issues.

And on the flip side - if most say it worked great for them, and tell me their experiences then I know what to expect. Or in this case, if I get worsening of sx, then I know that is fairly normal and to try to push through. A doctor may not be able to tell me these things.

NicHostetler said...
...Why do we have an increase in sx? Just because of inflamation? Or is it a herx because our immune system is starting to do its job?

Also, is this something I'd stay on my whole life? Or just a couple years until I am done treating lyme?

Good questions. The increase in sx can be caused by both - my Lyme-knowledgeable neurologist suggest that most of our neuropathy is caused by inflammation.

I'm not sure how long you should take it - I'm not sure it's best taken long-term. The thing about immune boosters is that there is some potential for creating auto-immune issues, although I don't know how much potential. And that might depend on the mechanism for stimulating immune function, which may or may not apply to LDN. Honestly, I researched it a long time ago and I'm drawing a blank for more detail! Maybe others will chime in.

-p

no doubt pirouette increasing your knowledge is part of figuring out the best solution for you. the point i was making is in the end you have to try something to know whether its going to work for you.

Pirouette said...
A few comments regarding posts by Kat1000 and TxBart -

For awhile, when LDN was first being used, the theory was that it would work best if taken right before bedtime. But many people found this would disrupt sleeping patterns.

So people started experimenting with earlier dosing, which seemed to work for a lot of people. For some, it just took awhile to figure out the best time for them to take it - which was another reason it just took awhile to acclimate to it.

It's optimal to start at .5mg and stay at that dose until you're fully acclimated and feel some relief. Then slowly titrate .5mg at a time. Max dose most MDs will prescribe is 4.5mg.

-p

Lots of good info here. I found that taking it at night was disruptive to sleep so I have been taking it in the morning.

As you mentioned it's best to start at .5 mg and work dosages up from there. I personally found that it made me sick for the first couple of days each time I increased the dosage. I found my optimal dosage to be around 3mg but that number will certainty vary from person to person.

Overall I feel it's helped improve my health by about 10-15%. Ironically I made a vlog on this the other day for anyone who is interested I'll be posting it soon.
https://www.youtube.com/channel/UC11MGhnfbc0NXyTg9ShOCAQ

I've been on it for awhile, 4.5mg. I think it is hit or miss for patients, in general it seems like a thing that can be at least worth trying. I think it has helped me with pain, sleep, and herx issues.

This is another question, sorry I've got no info for the initial poster...

My llmd has also suggested this for me. Considering her current track record with me , I've got my doubts!

My main concern being that I take Kratom for pain control, and im not sure if the Ldn would block the effects of the kratom.

My pain is bad enough that I was on prescribed opioids for many years, I finally quit due to an insurance issue & after several months on no pain meds- totally bed bound & beginning to feel I couldn't go on with the chronic pain anymore- as a last resort I tried kratom.

And it worked - better that any prescription pain drug ever. And now, a year later it still works just as well. Sure , I still hurt- but that's a given. Now it's tolerable -for the most part.

I tried to question the LLMD about this, but she just said it shouldn't be a problem. I've heard her say that before with other things that wound up being big problems!!!

Anybody on here take ldn with kratom ? I've done some searches online & came up with some weird 'drug tolerance reduction ' type info -& on some sites I wouldn't trust...

I don't think that's at all related to the kind of info I'm looking for!
I'd appreciate any information! Thanks

LDN is an opioid antagonist.

So, it blocks the receptor, and prevents you from responding to the opiates... = no endorphin release.



That is what Naltrexone (full dose) is used for. - opiate addiction. Decreases the desire to use.