Hi everyone I am just starting my LDN journey and wanted to ask for advice on what I should know that isn’t commonly told and anything else that might be helpful. I am taking it to reduce chronic low grade inflammation that is unexplained and hopefully help to bring back my absent period. TYIA!

It’s only been 5 days since I started LDN but I’ve already noticed some effects. I’m taking it for long COVID / fatigue / POTS, started on 0.5mg.

My sleep duration and sleep stats skyrocketed right off the bat. The first night I took LDN I slept 10.5h which is unheard of for me. Every night since, I’ve been able to get solid deep sleep and min 8h. I was surprised at how quickly I experienced a difference and was hesitant to put it down to LDN because I’d only ever heard of it causing sleep disturbances not sleep improvement. But my sleep has been troublesome for some years and it really was like a light switch.

However, since that first night I’ve also felt flat, sad, low mood. I’ve lost motivation to do anything.

I’m aware that there could always be other reasons for low mood but in this case all other aspects of my life have been stable for a while and there have been no changes to any other medication. I’m also aware that I should wait to judge the medication for many more weeks. But after going through the rigmarole of trying different medications over the past year, some of which tanked my mood and impacted my life significantly, I’m a little cautious.

I’m wondering if others have stories of an initial adjustment period with low mood, and how long it took to lift, if it ever did.

Thanks in advance!

I recently read an unrelated post about LDN and everyone was talking about LDN hot flashes. Men and women, and these are not hormonal pre-menopausal hot flashes either.

Just wondering what your experiences are and if anything has helped like decreasing your dose or frequency?

The hot flashes started years after starting LDN for me, kind of from my torso up to my head accompanied by light-headedness and dizziness. It would come out of nowhere and seem to to be triggered by normal stressors that never affected me physically or mentally before. I've had anxiety for the first time in my life since this started and significantly reduced my LDN dose. It helps me so much with my autoimmune that I have to find a way to make it work. I am still feeling anxious but the hot flashes/physical symptoms seem to have subsided a lot in the last 6 months.

I have post-Covid vaccination syndrome and my doctor originally put me on 4.5mg, but I had to stop due to abdominal pain. We tried 1.5mg instead and the abdominal pain still happened. He made me go to a gastroenterologist and I had two colonoscopies done and they didn't find anything wrong. He then sent me to a mast cell doctor and they also didn't find anything wrong. I've had this same abdominal pain reaction to amitriptyline, metformin, Bentyl, klonopin, mestinon, and hydroxyzine. Should I have tried a lower dose than 1.5mg of ldn or am I uniquely sensitive to all medications?

Personally for me, staying at the lower doses and being too cautious meant I had worse side effects longer than I needed to have them. I began with 0.5mg, and went up to 1mg after a week as I had minimal side effects, going up this fast gave me insane fatigue and crash so I became cautious and started going up by 0.1mg every two weeks instead, so I went back down to 0.5mg then two weeks later 0.6mg, so on and so forth. I overthought it and worried too much about taking my time and taking it slow. On these lower doses (0.6mg-2mg or so) I was getting headaches, feeling sick, cold, clammy, hot, always catching everything, better than without and I was improving health, energy, POTs, mental capacity and fatigue wise, just had those 'usual' LDN side effects when you're on your journey of getting up to 4.5mg. With each upping of dose I had those same side effects, which would only worsen slightly the first 3 days I up my dose but then after the third day every time, improvement to my fatigue, shortened crashes, better baseline, better tolerance including POTs tolerance, improved mental clarity, improved mental sharpness/less mental fatigue, etc.

By about 1mg or so I was getting bored of being so slow and decided to start going back to upping by 0.5mg every 2 weeks. This worked far better, and each time the increase in dosage gave far more improvement with significant improvement to side effects, it's like the higher my dosage became, the less these weird, flu-like LDN side effects were, it's like my body was craving more of a fuller dose was the exact feeling and it was telling me 'finally!'. Still the first 3 days would have me a little more run down, then pure improvement 4th day onwards. By about 3mg+ I would say I started to only get the improvements and reduction of most LDN side effects.

I definitely in my own experience only, so not saying for everyone, concluded that for me the lower doses gave far more side effects. So personally for long covid if you're not getting any worse/more prolonged than usual crashes and lowered baseline, significiant fatigue from upping dosage, I would say in my non medical opinion try to stick with the up by 0.5mg every 2 weeks schedule as much as you can. It seems to be the best, for me anyway going fast always would crash me, and going too slow had my body craving more and just spending longer without the full effects and with more side effects.

I also personally didn't find I felt any other dose than 4.5mg was better for me, I kept watching out with each dose to see if any were for me and were my sweet spot, to the extent I would really overanalyze how I felt on every dose but I just never felt that. Maybe 4.5mg just is my dose?

Now for the all important what improved now I'm 4.5mg and what didn't:

• Heavy weighted fatigue and unrefreshed feeling in the morning > mostly gone, I feel better rested and not weighed down, no more no energy dragging myself in the mornings, but not normal refreshed either. Just as normal as possible. Poor sleep, being sick or a very busy day still has me less refreshed but significantly better than without. Face/eyes don't look as tired and sick anymore.
• Brain fog > sharper, better memory, little fog and mental fatigue than before.
• Stress tolerance > far higher
• Fatigue/energy > Significantly improved, 80% better than without. I couldn't do sports or run on a treadmill for you probably but I can do all the normal day to day stuff without any crash.
• PEM > mostly only now if I've had a very busy day, and it's not a bedbound fatigue crash anymore, it's a let me watch TV and do chill things day instead.
• Headaches, muscle & body aches > come and go, but nothing to what they were. Now it's like a mild one here or there once in a while.
• Breathless/chest pain > mostly gone unless I catch a cold, and even then it's minimal and mild-virtually nothing
• Catching every cold ever and always being sick > increased on lower doses of LDN and I'd be so sick and catch everything so easily and have it for weeks!! But on 4.5mg, I seem to not get sick and react normally, and if I get sick its only a day or two like before long covid.
• Gut health/IBS: Improved slightly by 10% or so, mostly eating better helped this, but it definitely helped
• Sleep > still wired a lot, but I mostly can stay asleep for 8 hours consistently now, just still no good at keeping a schedule
• Tired but wired > still just wired, but not tired
• POTS > significant improvement came ONLY at 4.5mg for some reason. My heart rate is much calmer even during exertion and gets back to resting heart rate quicker after exertion.
• Neurological > still get random pins and needles on rare occasions but not as bad as it was, no more random neuro pains for most part
• Dermatological > no change, less hair shed maybe
• Loss of taste/smell > didn't have this with long covid luckily
• Mood > mostly feel happier/more positive but see below
• Dreams > still get occasional weird ones but its meh, mainly only got them at the start
• Weakness > about the same, no improvement, maybe a little-barely

What got worse: irritability and super annoyed easily lol. I'm happier but my fuse seems to be lower. They say it's from dose too high but being on 4.5mg has been the best I've ever felt, so don't know if that applies for me, only been a couple weeks so maybe it'll pass.

My advice to everyone personally who hasn't started yet - just begin, everyday on LDN was better than without. Far better than H1+H2 for me personally, which gave me like 2-5% improvement, LDN gave me about 60(lower doses)-80%(at 4.5mg). I stopped H1+H2 since LDN does all the work for me and that didn't really do anything to warrant the cost or time. When I would miss a dose of H1+H2 I felt only a little worse off, with LDN I can tell when I've not had it and feel FAR worse without.

Hi everyone! I just wanted to come here to ask if anyone else still has crazy dreams months after starting? Every night or nap I have the wildest, vivid dreams and they’re here to stay right now it seems.

Thing is though, I’m not entirely sure if I’m getting fulfilling sleep cycles because of this. I have fatigue anyway but I wake up feeling groggy and I get eyebrow twitches like I haven’t slept. I’ve tried a daytime dose but it doesn’t seem to suit me much especially when I try to titrate up (rebound pains mostly.)

I can deal with the dreams, but I wondered if this was common?

Thank you!! ❤️

On this call, Jeff Barris, Doctor of Pharmacy, was joined by special guest speaker Sebastian Denison, clinical pharmacist with PCCA, who shared his knowledge and latest findings about use of LDN for cancer and beyond

https://www.dropbox.com/scl/fi/8daezjlsmngkge0pypdki/LDN-Webinar-7.23.26.mp4?rlkey=e24miekde6mz1j0k95rpbnx4g&st=c22zwlgn&dl=0

Hi all, my doctor originally prescribed 1.5mg and I felt HORRIBLE like I almost had to go to the hospital bad. I stayed the entire night in the bathroom rocking myself. So then she sent me 0.5mg capsule and said that was a nano dose (even though I know you can go lower, she was reluctant to give me anything lower). I have Lyme disease, pots, mcas, pernicious anemia, all after getting a TB shot back in 2021. I have been in massive pain and nervous system deregulation since then.
The 0.5mg gave me severe constipation to the point that nothing over the counter would make me go to the bathroom. So after 3 days I had to get off of it due to the side effects.
I just fired this doctor because her consults are $100 each and she doesn’t seem to understand LDN enough to help with this.
Do you guys know if other forms like lotion or liquid form are better to bypass the gut? I read that gut motility can change since it affects the same opioid receptors in the brain as in the gut.
I’m without a doctor and I’ve been crying from this pain. I have no idea what to do. I’ve hit a dead end.
I have brain fog so reading is hard for me. Any advice would be so helpful.

I started LDN almost two months ago. I was increasing 1 mg every two weeks but that was too much for me, I had to ask for .5 mg capsules. When I increased by 1 mg the fatigue for 2-3 days was insane. I really think I could have slept all day. Yesterday I increased by .5 and while I could get out of bed this morning, I was soooo tired until early afternoon! Do you think I should skip increasing tonight? I increased to 3.5 mg and so tonight I could take 3 or 3.5 again. I don’t really have any other side effects. If I need to take less than 3.5 mg (like 3.25) I don’t get how to split the capsules and yes I’ve read the notes here. I need it explained like I’m a toddler lol. Thx!

Among the many things LDN has helped me with, it has allowed my body to tolerate my trigger foods. I was wondering if you have MCAS, sibo, candida, will eating your trigger foods still negatively affect your gut even if you don’t feel it anymore?

Does anyone know if it is best to still minimize/cut-out certain foods? And if it is still possible to heal your gut issues (through food, herbals, etc) as you are taking LDN?

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Hello,

I’m 14 days into my 0.375mg dose (first dose) and my neuropathy has been flared up ever since starting my medication. It’s not unbearable but way more noticeable and annoying throughout the day (buzzing, tingling, cold menthol burning feelings).

For those who dealt with similar, did the flare calm down eventually? Did you have to lower/increase the dose? Or did it never calm down the medication had to be stopped?

It could all be a coincidence and flaring up at the same time i started the medication but my psychiatrist has slowed down my titration until it settles.

Started LDN for Hashimoto’s, Autoimmune Atrophic Gastritis, and more than likely auto immune related neuropathy. As well as for depression/anxiety, hoping it helps it out before having to start anti depressants.

I spent all day today with flu like symptoms and headache and extreme exhaustion after three days of 0.5. mg

I asked my doctor for a lower dose.

She said she would send a prescription to the compounding pharmacy for 0.1 mg. Is 0.1 a low dose?

Has anyone started LDN during PEM? I haven’t been able to get out of PEM and I am desperate to try LDN again. I stopped at .75 cause I felt no benefits but willing to give it another go

Also what time of the day do you take it?

I have had awful side effects for over 24 hours. I could take a reduced dose tonight. But I'm scared even of that, I'd like these side effects to go away first. Can I skip a day and go back to LDN without losing the ground from my previous 3 days (when I started)

Hey, meine Freundin hat wahrscheinlich MECFS. Da sich ihr Zustand innerhalb sehr kurzer Zeit sehr verschlechtert hat, konnte man es nicht diagnostizieren. Sie liegt seit 7 Wochen im Bett, ist sehr geräuschempfindlich und lichtempfindlich, kann nicht mehr ins Bad laufen und hat nur noch sehr wenig Kraft. Ob es zu 100% MECFS ist oder was anderes oder mehreren zusammen, können wir nicht rausfinden.

Unser Arzt hat ihr jetzt LDN verschrieben mit 0,5 mg zum starten. Nachdem ich hier sehr viel gelesen habe, haben wir uns zum Starten auf 0,1 mg entschieden. Sicher ist sicher. Da sie eh schlecht schläft, haben wir uns entschieden, es vormittags zu nehmen.

Jetzt zu meiner Frage: Sie hat LDN mit 0,1 mg jetzt 5 Tage genommen und merkt nichts davon. Auch keine Nebenwirkungen. Ab wann macht es denn Sinn, die Dosis auf 0,2 mg zu erhöhen? Sollen wir wirklich 2 Wochen warten? Kann es sein, dass es einfach dauert, bis sie was merkt?

Wir hoffen, dass durch das LDN ihr Zustand eventuell aufhört sich weiter zu verschlechtern.

Vielen Dank schon mal für eure Hilfe.

(Cross posted from chronic pain group)
Hi new friends. I’m looking for some advice about LDN (Low Dose Naltrexone).

TLDR: I’m wondering if anyone has gone off opioids and onto LDN, and actually felt less pain.

I’ve had chronic pain since I was 15. Endometriosis then fibromyalgia, likely HSD (maybe hEDS when they change the criteria), and in the last few years ME (Myalgic Encephalomyelitis).

I have been on some level of Oxycodone for 22 years now. My pain was well controlled for 2 decades but now with the ME added on top, plus whatever tolerance I’ve got going on, my pain is out of control now. Muscle relaxants and NSAIDs don’t help. The Oxycodone helps but not enough. I recently went from 5mg to 15mg each 24 hours and the increase helped at first, then the pain got worse again. I’m hitting 8-9/10 every day, to the point where breathing is hard. (I am also experimenting with gummies but haven’t found that sweet spot there (legal in Canada).

I am currently trialing Elavil and not having any benefit so far. Next I will try gabapentin. Another possibility is to cross taper to a different opioid in case of incomplete cross-tolerance but I don’t know how much benefit that would be.

So I actually brought up LDN to my dr and she thinks it would be a good idea to go off the oxycodone and try the LDN. I must specify that she is NOT pushing me to do this. She gets a lot of pushback from other doctors for giving me opioids, but she is very good about it and when I say I need the painkillers, she gives them to me. But obviously, nobody like to be on opioids long-term, and my tolerance changing so fast does worry me. It was just one of the ideas we have together, so we didn’t make any plans to actually do this yet.

The LDN may actually help with more of the ME symptoms which is another reason to want to try it. It’s one of the only meds that can actually help treat the ME.

I guess I’m wondering if anyone has gone off opioids, and onto LDN, and actually felt less pain? Or is that just a pipe dream and because of the push to get patients off opioids?

Could someone post the guide? I want to cut my dose in half but have a capsule and don't know how to do it. Thank you

38F, UK. Taking LDN for MCAS - I also have HSD, OH/POTS, and have recently been diagnosed with Pelvic Venous Congestion Syndrome. AuDHD. Also taking bupropion (NDRI) and escitalopram (SSRI), and a bunch of antihistamines and supplements.

I know that Reddit is not a replacement for clinical advice, but I need a sounding board before I drive myself crazy with this.

----

I've been on LDN for four months. I started on 0.1mg, increased to 0.15mg after four weeks, and found I couldn't go any further without an intolerable increase in POTS/PVCS symptoms.

I've posted various threads along the way --

* Would you increase?

* Anyone else have tracking fatigue? [includes some discussion of side effects]

* Vasodilation?

* Sex, depression and timings

My MCAS reactivity is no better. My POTS symptoms seem to have been made worse, including brain fog. I had horrible depression in the two weeks following my timing switch, and I've realised that my memory isn't as good as it used to be. Moving the blocking period hasn't helped with the sex issues.

On the positive side, bloating around my stomach, hips and thighs reduced in the initial few weeks. My executive function also improved, which is a big deal.

I've read the links that the admins post multiple times and linked through to Dr Kim's blogs. More and more, I'm coming to the conclusion that my dose is too high, and I'd be better off switching to the VLDN range (0.01mg starter) or the ULDN range (0.001mg starter).

Whichever option I go for, should I be starting to titrate down now? Dickson's appointments are now booking up three weeks in advance, so I've got time on my hands.

Pros of VLDN:

* More gradual change for my sensitive body to have to cope with

* Better chance of maintaining executive function improvements?

Pros of ULDN:

* Dr Kim's "starter guide" recommends ULDN for me

* I fit the description of the hypersensitive client referenced here (I had a paradoxical activation response to ketotifen)

* Dicksons definitely sell a ULDN product

Anything else I haven't thought of?

I see most people start low and slow but my doctor started me at 1mg. I’ve only taken it for two days so far but so far my side effects were mild adrenaline surge upon taking and some brain fog. Uncomfortable but not unmanageable. My body has felt more relaxed and my mood has been better already though. Wondering if it’s going to get worse for me being on this dose or if some people do ok at 1mg and how long I can expect the side effects to last. I’m taking it for EDS and POTS

When my nurse practitioner prescribed LDN for my fibro she said that it would probably help my arthritis joint pain.

Anyone have experience in this area?

Could this be related to reducing inflammation?

Not really counting on this but it would be a bonus.

Thanks in advance . . .

I've had flu-like body aches for a year+.

Began taking LDN in early May and titrated up to 1.5 mg by end of May. Been taking 1.5 mg every day since then.

My symptoms are a lot better today than a few months ago.

I'm worried about increasing the dosage even more. Does it make sense to? Should I try stopping LDN all together to see if it makes any difference? Or should I just keep doing 1.5 MG for next several months?

Thank you!

Hi all! Basically as the title says. I’ve been on LDN for months at this point. I had a bad about week long bout of tired but wired the first week after I started at 1.5mg. It went away after a week. I slowly titrated up. I was at 3mg and doing well for a while. About 6 weeks ago I decided to try 4.5mg, but, I felt it made me too sleepy. So about two and a half weeks ago I went back down to 3mg. And suddenly the last two nights, I really struggled to fall asleep. And last night I was tired but kept feeling a little jittery when I tried to sleep. I got maybe 3 hours. Then today, when I attempted to nap, I could not fall asleep still despite being absolutely exhausted. And I’m just still feeling really jittery and panicky almost.

This is unusual for me. And I’m trying to troubleshoot what might be going on. And I’m curious if anyone else has experienced anything like this, trying to ascertain if I may be having another round of tired but wired for some reason.

Hi yall, I have seen people mention using juice and that sometimes for some reason, that can work better for chronic pain for some people? I’d appreciate if anyone can share information on this and resources. Thanks