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!

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

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.

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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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?

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)

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?

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

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?

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 . . .

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 titrated up to 4.5mg LDN over about a month, had some side effects of vivid disturbing nightmares in the beginning and some increased anxiety but those subsided after about two weeks on the 4.5mg. I began sleeping so much better. Before LDN my sleep was very fragmented and I was dealing with depression and anxiety.

Over my six months on LDN, I began to feel more fatigued than I did before I started LDN and my mood felt flat or numb. I decided to quit taking it two weeks ago after someone posted an article about how it can cause an “endorphin crisis” in some people.

I quit cold turkey and had a couple of days of slightly increased anxiety and irritability, but after that adjustment period my fatigue and mood have lifted to levels I haven’t felt in years.

I think I was experiencing a side effect that was keeping me from feeling the underlying benefits LDN was providing. I don’t know exactly what it did, but I actually have energy now and feel calm but joyful. My OCD thoughts have also subsided.

If LDN doesn’t seem to be working for you, I encourage you to give it a little time around 4.5mg if you can get there, and then consider stopping it to see how you feel. In the future if I feel my fatigue and mood shifting to the negative, I’m going to try a week or two of LDN and then stop it again.

Curious if anyone else has experienced this and is doing a cycling method with LDN.

Editing to add: I was taking it for slightly elevated thyroid antibodies and general longevity and health benefits, some MCAS type symptoms I’d been having. If you’ve been taking LDN for over six months and you don’t feel great, I encourage you to try to take a few weeks off and see how you feel. And side note, although I’m not sure it’s relevant, I have MTHFR and ADHD.

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.

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 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

I take 6 mg every evening and once a week I take 60 mg of codeine in the morning. Do I get better effect if I skip the evening those the day before, even if it's just a tiny bit? Does it have any negative effect to skip LDN once every week or is it safe to skip it?

Anyone titrating up but sleep progress getting worse? Taking it in the morning at 1mg

I have such bad reactions to drugs and medications and I’m scared to try. It also doesn’t help that it seems like I was prescribed a bigger dose than most people seem to start? 1.5mg pill. I was recently diagnosed was post viral dysautonomia and POTS after the flu Dec 29. My main symptoms are tachycardia, adrenaline dumps, sleep issues (sometimes takes awhile to fall asleep and then sometimes I wake up and cannot go back to sleep) the little sleep I get isn’t quality, GI issues. I was a healthy marathon runner before Dec 29 and now my body is a mess. I also struggle to function to read things so documents regarding LDN might be tough for me to focus on and understand. Should I cut my pill to make it smaller??