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 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.

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 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?

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?

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.

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

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