hey all,
big sorry if this is a question that’s already been asked, but I couldn’t really find a similar post!

I wanted to ask what you guys experienced when you found the right dose and how I would know it’s not working?
I am on LDN for 3 months now, taking it for moderate ME and the strong muscle pain that I experience with it (wouldn’t mind if it would also help with the other stuff lol)
I started at 0.5 and went up 0.5 every few weeks (I now reached 3mg).
For around 10-14 days I have strong side effects (stronger pain, depression, sensitivity), once that’s gone I end up with my usual pain level again.

I wonder how you guys know it’s working for you?
I thought that I would find my sweet spot under 4.5mg, but looks like I will go up.
I am a bit scared that it’s just not working for me. Could that be? I am super confused why I don’t feel any different.

Thank you so much!

​

Hi everyone,

I’m mainly looking for experiences from people with severe or very severe ME/CFS, especially those who are bedbound 24/7.

My husband has very severe ME/CFS. He is also floxed (post-fluoroquinolone syndrome) and has POTS/dysautonomia.

He is currently bedbound 24/7 and can no longer tolerate sitting upright. He is also unable to look at a screen.

His head/brain symptoms are particularly difficult to cope with. He describes a deep burning sensation inside his head, as if his brain is burning, and sometimes a very strange sensation as if his brain is twisting inside his head. He also has an extremely heavy feeling in his head, intense pressure and severe cognitive/brain fatigue, together with extreme sensitivity to stimulation. This is currently one of his most unbearable symptoms.

We tried LDN, but stopped after 8 days at 0.10 mg.

He started at 0.02 mg, then increased to 0.06 mg two days later, and then to 0.10 mg another two days later. He didn’t feel anything unusual with the first doses. After reaching 0.10 mg, however, he developed:

- worsening/reactivation of his neuropathy;

- muscle pain;

- severe fatigue;

- and he could no longer tolerate sitting upright.

We are wondering whether he may have increased the dose too quickly or reached a dose that was too high for him at that time.

This was also in June, during a heatwave in France, so we wonder whether the heat may have worsened his POTS and contributed to his poor tolerance.

We are considering trying LDN again, but this time at a much lower dose and increasing much more slowly, after discussing it with his doctor.

We would really appreciate experiences from people in a similar situation.

For those with severe or very severe ME/CFS:

- What dose did you start with?

- Did anyone start below 0.10 mg?

- How slowly did you increase the dose?

- Did you notice a difference between increasing quickly versus very slowly?

- Did you experience worsening symptoms at first? How long did it last?

- Did LDN improve your brain fatigue, the burning/pressure sensation in your head, or your sensitivity to stimulation?

- Did it improve your ability to tolerate sitting upright or activity?

- For those who also have POTS/dysautonomia or are floxed, how did you respond to LDN?

- For those who are very severe: did you eventually benefit despite having a difficult reaction at the beginning?

Thank you so much to anyone willing to share their experience. We are particularly looking for experiences from people who are severe or very severe, because his current level of disability is extremely high.

4 weeks in, still at .5mg for LC. Been feeling great at this dose so going slow. Everyone in my house has caught a bug that was severe for about 3 days. Pretty sure I've got it, but it's really mild for me. I keep feeling like I just have a touch of the rundown feeling but it just hasn't progressed for 2 days. Any connection with immune boost while on LDN to fight infections?

Has anyone noticed a higher tolerance or relief from common overstimulation triggers?

Today, I barely slept due to a migraine and woke up with a lingering headache. That in itself would have usually knocked me out for the day, but I was able to at least start the day knowing it'd be hard. A month ago before I started LDN, I would have had no chance. I took my (also sleep deprived) toddler to the zoo. It was busy. People were everywhere. We ate lunch in a cafeteria setting that was loud and echo-y, with kids banging on a piano. I could focus on my conversation and my toddler without even frustration. Usually I would have to take my lunch outside and let my spouse deal with it.

Was overstimulation another symptom I didn't know I could treat?

Just 2 weeks on .75mg has brought my ANA titers down significantly.

Before starting, I had positive ANA with centromere 1:1280 and homogenous 1:1280

After only 2 weeks on this medication, I am now at centromere 1:320 and homogenous 1:80

I’m elated. My fatigue is alleviated already. This is incredible news. I haven’t had titers this low in 7 years 🥳🥳🥳

As the post states I just started LDN 1.5mg on Thursday night and ceased my endone 5mg I was having 2-3 times a day. My doc said to call her if my pain was unmanageable and she would decide my best choice of pain management (I’m guessing if it it was safe to have a endone or not?)

but it’s a Sunday in Australia and Telehealth doc was useless basically said go to hospital. Here in Australia all hospitals do for chronic pain sufferers is treat you like a drug seeker. I have axial spondioarthritis and costochondritis and my rheum has told me basically to just have Panadol for the pain but Panadol is doing nothing!

What the actual eff can I have or do?
I’m seriously not coping? I have notice the pain is not as often as before but when it comes back boy does it come back. I’m just shit out of luck with no where open and phone docs being useless 🫩😭

It feels like no amount of rest will get rid of these two symptoms for me. Has anyone seem improvement in these symptoms, either with LDN or something else?

Hey everyone! It's not the first time I took this medication, and about 14 years ago was the first time I tried it out. Back then, I still had a lot of withdrawal symptoms from eating a very crappy diet, various selfmedicating behavior and having an overall unhealthy lifestyle. So it was more like a drip of water in an ocean, and I didn't feel that much from it except for very intense, vivid dreams.

Got diagnosed with Hashimoto's and RA 4 years ago, and now taking 100mg of levothyroxine daily. Blood levels are ok, with good T3 and free T4 levels and TSH of around 2. I am also diagnosed with ADHD and have strong suspicion of being on the autism spectrum as well.

These days I live a pretty healthy lifestyle, good sleep, no more excessive drug use, in touch with my emotions and a very stable, secure relationship with my partner had me feeling overal good on a mental level. Yet I was still experiencing the following things:
- irrelevant worries/anxiety
- racing thoughts
- mild depression
- overeating
- intense craving for alcohol
- inability to focus on some days/brain fog

Taking LDN for about a week now and all of these feelings are ... GONE. *poof*
It's hard to believe that a medication can do this, so quickly. In the past I have tried medications like
- Wellbutrin (gave me extreme anhedonia + horrible tinnitus)
- Rilatine (made me a freaking robot, also anhedonia)
- dextro-amphetamine (works good, but after a few days it can creep up in my mood and make me more depressed)
- tramadol (worked almost exactly like LDN for me with the exception that I felt like a junkie when it's worn off and I felt like horseshit when I quit)
- lots and lots of cafeine (works good in the moment but messes up sleep and gives you jittery/rushed feeling in the comedown)
- cannabis (made my forgetfulness worse, depression/anhedonia when not stoned, and in the end gave me huge anxiety and was an addicting habit)

I don't know why exactly this medication works it's wonders so well, and I got so lucky to get the dose right (seeing these stories, dosing is about the hardest thing with this drug) but I am SO grateful right now.

I take 3mg 2 hours before bedtime, and I sleep very deep now. My sleep used to be on the lighter side. When I wake up, it's still adjusting to waking up slowly, and thus feeling a little sleepy, instead of having this surge of anxiety rushing through me.
My dreams aren't as vivid as first time around, but they are there like they have always been. Been working with my dreams and processing them for years now and writing them all down, that definitely helps.

During the day I feel
- energized, yet calm and collected
- happier, more content
- more organized
- less of a boundary to start doing things
- NO MORE URGE TO DRINK ALCOHOL

That last part is blowing my mind tbh. I'm not a huge drinker, and don't drink during the week. But when friday comes I always look forward to having a few beers and getting in the couch. And I would do the same on saturday eve. This isn't good for me though, because of my hashimoto's and the way even a little alcohol messes up my sleep. The urge to drink has completely left the building. Amazing!
The feeling of LDN is definitely very "there", a little cerebral and a noticeable on the body. It reminds me of smoking good weed back in the day but without your memory being impaired and without the comedown.

So the reason I originally took this is to counter the inflammation and joint pain in my body. Both from Hashimoto's and RA. Very excited to see the results in a blood panel the next time. This feels like a LIFESAVER!

Thanks everyone on this sub for your stories and contributions, it helped me make the step towards this medication and altering my life in a very positive direction!

About 10 days into LDN for Long COVID (mostly for heavy overstimulation and intense DPDR/brain fog). Currently scaling up to 1mg. Honestly mornings are actually getting a bit easier and I'm slowly coming out of the deep valley of the start.
But I literally just realized that alcohol and LDN are a disaster combination. 😭
To be fair, drinking with LC was already Russian roulette anyway. But life sucked so hard the last 3 years that sometimes I just went for a drink with the boys anyway just to survive the evening. Paid the highest price with a heavy crash for 1-2 weeks right after, but yeah.
Now that life is finally getting a bit more okay and stable, I'm really gonna miss those pub nights. Anyone else here on 1mg LDN who still drinks like 1 or 2 beers max just for the taste and the hang? Or do those microdose effects from the LDN immediately make you feel sick or give you a splitting headache live at the bar?

I mean right now it sounds like i wont be able to have any drinks also not during Christmas or any festive events till i’m off LDN again, which will probably be atleast a year.

TLDR: Anyone got info on getting their dr to prescribe the 50 mg pills (to be diluted) for cost savings? Or have a dr recomendation in TN who will do it?

I had a prescription from a functional med dr and she was making me compound it at over $90/mo! My dr wouldn't prescribe the 50mg pills and she ghosted me when she messed up by not tracking all the supplements she had me on and I caught her in that. So I switched to getting it on my own overseas in 50mg pills that I dilute. Been doing this for many years. Well, enter the current administration and I will no longer be able to to get my shipments from overseas, even though I had a valid prescription for the actual dosage I was using.

I can't afford AgelessRX. I've been spending like $6/mo until now and have many many other meds I have to also take.

Can stopping LDN for a month affect your TSH levels to the point of hyperthyroidism? I only take LDN for a year and at a low dose between 0.2 and 0.4mg. I need to start again but I had issue with my compounded pharmacy so I had one month without it.

My testing came back with a TSH level of 0.06 and my normal range (also before LDN) is usually between 0.5-1.5.
I've been very symptomatic with high heart rate, tremors, insomnia, syncopes and all symptoms I get from my Long Covid, MECFS, HEDS, MCAS and endometriosis worsened.

When I was at my highest LDN level my TSH has been the highest with 2.5 for a while before coming back to my usual range so I wonder if stopping can make it crash too. Any similar experiences?

Is anyone here taking a dose of 1mg or even below? My practitioner wants me to start with 0.25mg and then titrate up to 1mg and stay there which seems so low compared to what others are taking here.
Did anyone see results in their symptoms with this dose, and if yes with what symptoms? Would highly appreciate your insights :)

Rx’d 1.5mg for reactivated EBV (also Hashi’s, Lyme/MS). I took it in the AM (9am D1 and then 6am D2) because I have a history of insomnia, and I don’t play with my sleep. Pharmacist told me it should HELP me sleep, but all it did was make me feel SO tired/WIRED. I tried to lay down for a nap and couldn’t settle. It’s such an awful feeling. It is capsules and not tablets, so I think I could theoretically open a cap, eyeball 3rds and drink in juice or something.

Any thoughts on what I should do?

Hi all,

I’d SI-joint inflammation in August that left me bedridden for a month. GP referred me to a pain specialist, got a rhizotomy and radio frequency something else done, as well as INDIBA therapy sessions with the PT.

The pain specialist took me out of Pregabalin because it was making me brain foggy to the point that it was affecting all aspects of life. Being taking LDN for fibromyalgia and chronic fatigue now (2 months only).

Idk if it’s actually working… compared to Pregabalin it’s nothing… I understand they work differently in the body, and the LDN helps your natural pain management, but although I do feel less brain fogged and less tired with it, on the other hand, the pain has interrupted my sleep again, and the med triggers my motion sickness/nausea, so not so beneficial I’d say…

Anyone happy to share their own experiences is more than welcomed please. Thank you! ☺️

Looking for others experience, just about to start LDN for Fibro and already suffer insomnia, is there anyone with experience using LDN and Mirtazapine? Or what other medication do you use with LDN to help with sleep? Already taking Dayvigo but cost too much to continue.

I’m officially diagnosed with fibromyalgia Thank you

I’ve been slowly titrating LDN, starting at an extremely low dose.

I was doing fine on 0.1 mg, apart from some loose stools. I didn’t notice any positive effects, but no significant side effects either. I was on 0.1 mg for about two weeks

Three days ago, I increased my dose to 0.2 mg, and I feel absolutely awful.
I’m experiencing:
Severe nausea
Dizziness
Stomach pain and digestive issues
Intense anxiety, almost unbearable
Feeling generally sick, almost like I have the flu or a stomach bug

I’m taking LDN primarily for chronic pain, fatigue and post-exertional malaise (PEM). I also have POTS, hypermobility and ADHD.

I take:

Yyvanse 40 mg.

Propropolol 30 mg.

Paracetamol 4 g.

NSAiDs 1,5 g.

And

Melatonin.

I’ve read some posts suggesting that certain people actually tolerate higher starting doses, such as 4.5–6 mg, better than ultra-low doses.

Has anyone experienced severe side effects at very low doses but actually felt better after increasing to a much higher dose?

Help!

I really want this to work, but not keen on worsen my symptoms.

I’d really appreciate hearing about your experiences!

Using low dose naltrexone to treat hashimtoes and general over active immune system. It’s been working great but I’m concerned I’m going to adapt to it? Any thoughts on this?

I saw someone say you can take it every 2 days but then do you take the 4.5 you’ve worked up to or how does it work in that case.

I’m taking LDN in the morning and I noticed that after some hours (maybe when the endorphins deplete) I feel more irritable and angry. Maybe it’s just my shitty workplace haha but has anyone else experienced it ? It’s pretty weird.

Just about to start LDN and had a solution compounded.
It’s got a 30 day use by date.

Can I use the same syringe for 30 days and just keep it in a Ziploc bag in the fridge too?

What are you doing?

What up, my fellow sleepyheads? Very new to taking this drug, started at 0.5mg. I have a question about THC and all things related. Like everything else w/ this medication, the amount of variance there seems to be from person to person makes my mind stretch and bend in uncomfortable ways, so I have a different type of question…

Not can we consume weed with it or not. For the sake of safety & efficacy, of course that’s an important question. But should we be combining it in the first place?

I stand corrected. I didn’t just use my pax for the first time since starting and I’m not having a grrrreat time. Like a groovy hippie I am not!

But should we be doing this? Is it enhancing or impairing the awesome potential of this drug? I’d love to hear what you guys think! Thank you all for your time and any contributed commentary. We are tired out here, so it means a little more when you give your precious energy to online yahoos. Live long and prosper.