Low Dose Naltrexone (LDN)

I also found this link that could explain worsening of symptoms:

https://ldnresearchtrust.org/can-ldn-make-symptoms-worse

I will contribute here where I am able - although I have also just started

i have been interested in this for quite some time - and have been reading up and preparing to take it - but wanted to have all other medications/herbs/supplements stable before embarking on it - as its likely that the first few weeks/months can be tricky - and prior experience with other trials has taught me that things rarely go exactly to plan when something complex like Lyme is involved. for this reason, i didn't want any other changes in the mix to confuse the picture of what was going on.

as some context - i have been ill for almost 6 years now - fatigue, joint pain and swelling, gut issues and headaches, and sleep problems have been my most limiting symptoms.
aside from the recent addition of LDN, i am taking quite a lot of things for my Lyme and suspected Bart - mainly a comprehensive protocol of herb tinctures following closely Buhners books for Lyme and Bart
and also black seed oil and a number of other supplements especially for detox support ( eg alpha-lipoic acid, NAC, MSM, L-arginine, vitamin C, vitamin D3, Vitamin A, zinc, selenium and B vitamins)

these have been gradually added and ramped up over the past 12 months or so - to give my body a chance to get used to them without huge herx reactions - and to help me understand how i react to each of them and in what doses i can tolerate them - so the protocol has been highly personalized.
( i had tried just going in with everything in burners books in the past and the herx was so severe I just couldn't function and lasted weeks with no sign of let-up - so I resolved to go low and slow)

this approach certainly seems to be working - as I have made significant progress over this time and have much more function than at any time since getting ill. but progress is still very slow and steady and so i am hoping for another step from LDN.

i have had the most long term benefits from immune-modulating therapies - and I do feel that getting the immune system functioning again so it can do its intended job is likely one of the best approaches - if that is possible - so that is one of the reasons i am keen to try this.

i hope to benefit from both the anti-inflammatory effects of LDN ( esp reducing IL-6 - the cytokine typically responsible for poor sleep) and also the immune regulating function ( have Hashimoto's thyroiditis - and other suspected autoimmune conditions - gall bladder issues, gum disease, as well as general intolerance to many foods)

the literature suggests LDN does not interfere with many other medications or treatments - but as it can help resolve some chronic complaints any existing medications for those may well need to be adjusted along the way - eg Thyroid - so i will monitor this at intervals along the way

I have just started LDN - around 2 weeks ago
I started with 0.5mg - taken the last thing at night - as that was what i had read most people who self administer do ) - but found it interfered with sleep quite dramatically

i already had issues in this department and so swapped to taking it 1st thing in the morning and this seems much better. this is also what the LDN research Foundation suggests.

so far i have had only some increased aching in my joints and back and sometimes a sudden but mild pain in my head right after taking it the first few times - but this is mild and goes again quite rapidly.

i think i feel a little bit extra slowed down after breakfast especially some days, but this is my worst time of day generally so quite hard to tell.
i have had some days where fatigue is also marginally worse - eg while walking - mainly in the first week and even then it was again manageable. just a slight drop in pace from my best days.

am planning on trying 1mg soon and will try to update with progress

Post Edited (Garzie) : 11/9/2020 9:37:30 AM (GMT-7)

HeartsinPain - Thanks for your input. What symptoms did it help with? Why did you stop?

Pre lyme diagnosis - I came across the LDN website and asked my Dr to prescribe it for my pain.
I got the prescription filled at the compounding pharmacy in my city.

It didn’t help - in fact after starting it. I started having pain in the middle of the night.
I ended up discontinuing

This is the website that I had stumbled upon

https://www.lowdosenaltrexone.org/

Girlie - do you recall your dosage? I started at 1.5 mg the first time which was too much for me.

Took LDN for about 3-4 months,
Didn't notice any benefit; I actually stopped because I started having very bizzare episode of "dreaming" awake in my bed, before falling asleep.
This was very disturbing, and convinced me not quit.

Daisies - Hi there! All is well here. And your kids?

The LDN is tricky! I just joined a LDN facebook group and it does seem to help a lot of people. The problem is it seems to take awhile to work and figure out the dose.

One thing I see a lot of people talk about is the filler used by compounding pharmacy can cause some issues. My tinnitus is really ramped up so I may call and see what filler they used. Would be crazy if that was causing the issue but I’m so sensitive to stuff that I wouldn’t be surprised!

I was prescribed LDN for pain by my rheumatologist. My low back and hips are now the worst of my issues! A year ago I wouldn’t have said that. I don’t know yet if it’s helping.

I hope it helps you! Keep me updated!

1000Daisies said...


I've recently started LDN a month or so ago. I have 4.5mg pills to be taken at bedtime. But I'm usually around 1mg instead. I can't seem to get much higher than 1mg without it messing up my sleep. I haven't switched it to morning yet... I read such conflicting information about whether to take in am or pm. It doesn't do anything for me yet -- nothing good, nothing bad (except messing up my sleep). .

yep - even 0.5mg taken the last thing at night immediately messed up my sleep - ( my sleep is not great already - but i switched to first thing in the am and its much better - no impact on sleep as far as i can detect - and v little noticeable impact on my day - possibly a fraction more slowed down in the mornings - in first week. but this is all to be expected I think.

in my reading i found that it's expected to cause natural endorphins to drop for around 4hrs after taking it - then they rebound - during that time you can feel more pain and fatigue. eventually, the endorphins become raised all of the time as an adaptation - and this is what brings many of the benefits - so it s a case of having to go through the pain to get to the gain - like so many things with Lyme - LOL

WalkingbyFaith said...
I remember LDN being talked about a lot more a few years back, but I didn’t pay much attention then.

I looked at the website. So LDN is used for many disorders and for opioid addiction. It modulates the immune system and helps endorphins. So what’s the rub? If you take this for Lyme/co and it relieves your symptoms, do you have to continue indefinitely or you relapse? Do you have to simultaneously treat infections in order to get lasting results?

If it worked well, why did people stop talking about it here?

the way its supposed to work is 2 main modes
the first is as an anti-inflammatory - helps as long as you care to take it
the second is teh immune modulating action -

as i understand it it helps reverse the shift from TH1 to TH2 and TH17 immune function that bacterial infections and chronic ill health have caused.

this then allows the immune system to function more normally - and n doing so enables it to help fight off infections.

as i understand it - it's generally intended as an adjunct treatment for those with Lyme in that it can:
-reduce overall inflammation
-help them sleep better
-reduce general pain and pain syndromes
-help the immune function recover - and do its job

so it is usually combined with ABX that treat the underlying infection - and so eventually it is no longer needed and can be withdrawn ( gradually is recommended )

i guess a large % of people with Lyme and complex health issues stop because
- it is often a bumpy ride during the ramp-up phase - we are told to aim to get to around 4mg / day, but over 0.5mg makes many people feel pretty rough at first.
- some start on 1.5mg or even a full dose of 4.5mg and do not tolerate it well
- its probably not cheap as is normally compounded to order - so there is that disincentive
- like most things - it probably doesn't work for everyone

by the way - I am preparing my own from commercially available 50mg tablets and the cost is not an issue that way. probably less than $30 for a years supply
happy to post details if anyone is interested.

I've been on LDN for a couple of years. I began with 0.5 mg at bedtime and experienced improved (i.e. less bad) sleep the very first night.

Every seven days, I increased my dose by 0.5 mg, working toward a target of 4.5 mg. At 3.5 mg, my sleep worsened, so I reduced my dose to 3.0 mg. Eventually, I reduced down to 2.0 mg and found no difference.

These days, I'm taking 1.0 mg at bedtime, along with 300 mcg of extended release melatonin.

Whether taking 3.0 mg, 2.0 mg, or 1.0 mg, I find no obvious difference. However, I've repeatedly confirmed that halting the medication results in more perturbed sleep. It usually takes one or two nights to notice. I've tried reducing my dose to 0.5 mg per night, but found this dose also results in worse sleep.

My provider set the initial target dose of 4.5 mg per day. I was told that, should taking the medication at bedtime negatively impact my sleep, I could take it in the mornings. However, she seemed to believe that taking it before bed was best. Thus, I was faced with taking a lower dose at bedtime or taking a higher dose during the day. As noted, I chose to take the lower dose at bedtime.

At some point, I may try a higher dose in the mornings and see if my sleep improves.

I had to switch to morning. And I’m only on .5mg. It has been rough at times. When I take it at night I wake up with internal shaking in my head. Feels like i have parkinsons! I also started clenching again which could be from the shaking. Last night was much better (I’m on day 3 of taking in the morning). Think I’ll stick here for at least a few more weeks before upping dose.

Daisies - from what I’ve read - the newest info on LDN says you still get benefit by taking in the morning. That was from LDN facebook group.

Omg my buddy had surgery a few days ago. Calls me up like 20 min ago saying he thinks he needs to go to the ER. Says he has the worst insane headache he’s ever had and he’s all messed up can’t think straight, blurry vision, very confused ready to vomit feels like nothing he’s ever felt before. I start asking questions...turns out he restarted LDN and took a Vicodin for his surgery recovery the same morning.

Def do not mix LDN and opiates by accident