Thinking of giving LDN a try for post viral syndrome - exercise intolerance, nerve hypersensitivity, possible Endothelial inflammation, POTs. I also have hashimotos and suspected MCAS/histamine intolerance.

I generally react badly to medication and want to have an "out" if it doesn't work for me. Is this possible with LDN? If I give it a couple of weeks and it doesn't work for me, can I safely discontinue?

I am also worried about whether it would worsen underlying symptoms - if I come off it will I get hit by the damage lack of pacing has caused without me knowing it (like other nerve meds).

Per the headline. Given it's immune modulating properties, can it be safely taken if you are still fighting the virus?

I have been sick for 14 months. A year ago I was severe and tried 0.05 mg of LDN and stopped due to HA, head pressure after three days.

I have improved to moderate now with the help of antihistamines. My main issues are PEM / Dysautonomia and neuro-MCAS.

A week ago I tried 1 microgram (I had expired compounded capsules from December 25) and had a bad sinus headache, anxiety and brain fog. BUT the best nights sleep.

I waited a day and then diluted to 0.1 microgram. This time I had severe fatigue and lethargy; my sleep wasn’t that great. Has anyone else had this where side effects are worse in a lower dose? Or should I have waited longer between doses?

I’ve also developed bad gingivitis around a molar - could this be related?

I’m wondering if I should wait a week and then try 0.001 micrograms? ( I am a physician and am aware I sound like a hypochondriac)I have been reading Dr Kim’s articles on ULDN

I have been on LDN for about 6 months now. Started at 1.5 and currently on 4.5. It has helped my inflammation markers and helped the frequency/intensify of pain but in the past month I feel my fibro getting worse again. I did some pharmacogenic testing and I think I may be a little tolerant to it. My medical practitioner said people go as high as 12.5mg depending on what level gives them most relief.

She has given me a 1.5mg to add to my 4.5mg dose. I will have to wait till I can afford to get it compounded.

For those with any of the following conditions, did you find more relief with doses higher than 4.5mg?

- fibromyalgia

- pcos

- adhd

- headaches

- joint and muscle pain

- tmj disorder

- hypermobility spectrum disorder

- lower libido

Not quite sure what the source of my issues is - likely post viral syndrome but who knows.

My energy levels are now good thankfully. But I had some crazy immune reaction (was getting borderline EBV tests for a while and ANA was VERY elevated, but autoimmune conditions were ruled out) which started with burning sensation in muscles, then vein pain which moved throughout body, then onset of POTs.

I'm 12 weeks in and while I'm feeling okay energy wise, minimal exertion is triggering pain/discomfort which I now think is either SFN pain or vascular pain (Endothelial inflammation/tissue hypoxia) or both.

When I rest completely things ease off. But I have no life! I'm told to pace pace pace physically but it's so tedious and I have commitments that mean I can't fully rest (young kids!).

I'm very nervous about throwing another variable into the mix but something has to change.

What would you do - wait it out and continue to rest as much as possible? Or try LDN? If so, why?

The NHS can’t help.. I understand there are private options but they seem expensive

Has anyone had any luck getting LDN in the uk and willing to share tips?

Thanks so much. Feel free to DM me if you prefer

ETA: In case relevant - I have ME CFS, fibromyalgia, suspected small fibre neuropathy among other chronic conditions that were exacerbated by covid

Started on 1mg was supposed to be 0.5 but I accidentally did 2 drops and thought fuck it let’s see, a week in and so far so good, I was actively 2 months deep in a flare, and I think I see a light at the end of the tunnel, I don’t know how much of this is pacing or if it was the LDN, what I will say is I struggle terribly with pain somnia, I have noticed my pain levels gradually decreasing & I was finally able to sleep (yes I did end up sleeping a lot for several days like basically a bear in hibernation) but for me that’s a good sign, when this happens it usually means I’m near the end of a flare because if it’s a flare that’s dominated by insomnia that sudden shift means I’m coming back to baseline & my body has finally “relaxed” enough to actually let me sleep.

I do suspect the combination of pacing and LDN did that as I’d been on essentially bed rest for 2 months with no end in sight until this week, we shall see, it could be coincidental timing & obviously I don’t have enough time yet under my belt to know for certain. But so far so good !

I just started at 0.5 five days ago. I take at bedtime as my doctor instructed. Every day since I started it, extreme exhaustion and nausea hits me around 2 pm and lasts for a few hours. I’m hoping it will get better within the next few days as my body adjusts because I’m really sensitive from chronic Lyme. Did this get better for anyone else that was experiencing this after just starting? I’m thinking about changing the time I take it to see if it helps.

Hello! I started on .5 capsule of Naltrexone 9/29 and immediately had severe side effects (worse fatigue, Brian fog, headaches, migraine, joint pain, irritability, nightmares, etc). I asked my Dr for the .25 and for some reason she hasn't been able to work this out with the compound pharmacy yet, but it's been a couple weeks now.

After initially feeling so bad, I read here that if you push through it can eventually help a lot, so I started trying every other day which seems kind of tolerable (but not great) at this point. However, any time I try to increase to daily, it knocks me on my ass again. Things that seem to have worsened that aren't improving are fatigue, alopecia, irritability, brain fog. Today tinnitus for some reason. I have mixed connective tissue disease, mcas, pots, migraines, LPP (etc). It also seems to make my ADHD really severe, if anyone else has experienced that please let me know.

I guess today after trying to take it for a second day in a row again, I just feel extremely discouraged. I had been on a little bit of methylprednisolone which seemed to counter the worsening of things. Did not take that today, and so I don't even feel like I can move because I'm so tired and cranky and a ton of my hair is falling out.

Dr has not really responded to me telling her several times that I've been trying to do the .5 every other day. She just responds to trying to get the lower dose in, and a week ago said she would reach out to the pharmacy again. I can see it's listed as a med that I take, so I believe her, I just don't know what else to do because I feel so stuck.

Are there people who only take it every other day? Idk that I can keep track of that long term. It feels like I've been taking this forever and nothing is getting better, but I realize now that it's only been a couple weeks. How long did it take for other people of doing every other day before they were able to increase?

Thanks for any info, experience, or words of encouragement. I just feel like I can't even think now. Sorry for the rambling.

Im curious whether you experienced any changes related to skin, hair or hormones, eg. changes in cycle (ir)regularities, acne, hair regrowth or anything similiar with LDN, regardless of whether it was a negative side effect or positive improvement in a prior symptom, and what dose you are taking, would really appreciate your insights since Im about to start my first dose next week!

I really don't know what to do. I've posted in here a few times since starting LDN, and I can't seem to figure out whether it's helping or hurting me.

I ordered it from AgelessRx in 0.5 mg sucrose capsules, which I took nightly for two months. Last week, I got frustrated with the side effects and the lack of progress, so I increased my dose to 1 mg for a few days and then tried 1.5 mg for two nights.

Pros: I feel more connected to my body, and stretching actually feels good again instead of just feeling like intense stiffness that won't budge. I do think my inflammation has gone down in some ways. In other ways, though, I feel like my face is going to explode from all the pressure.

Cons: I've felt like I'm in a fog this entire time. I don't feel like myself, and I just want to lie down and sleep. I've also had intense pressure in the lower part of my face, around my jaw, that hasn't gone away since starting the medication. I haven't been able to focus on work and feel incredibly inattentive to everything in my life.

The facial pressure is really concerning me and I wonder if this med just isn't going to work for me. I am also getting tics, and the urge to stretch my tight jaw over and over again (maybe also a tic).

My stiffness seems to improve, and I'm able to stretch, but then over the next few days, I get rock hard again.

I could try lowering my dose back to 0.5 mg and sticking with it longer, or push through and see if the higher doses work better for me. However, it's getting hard to live like this, and I find myself contemplating stopping the medication. I just want this to work so badly that I'm trying to stick it out.

If I go lower than 0.5 mg, I know myself well enough to worry that I won't keep up with the extra effort of diluting it in water every night. For some reason, the thought of doing that stresses me out.

I have suspected fibromyalgia and seem to react to every medication and supplement. I am extremely hypersensitive, I'm not sure whether MCAS could also be a factor. My doctors haven't really been able to help. My fibro symptoms started after breast implant surgery. I eventually had the implants removed three years later, but unfortunately, that didn't improve any of my symptoms.

I wish I knew what the right answer was. I've gotten a little too obsessed with trying to figure this out and have spent way too many hours on this subreddit, but I'm just so desperate to feel better.

Any advice or personal experiences would be welcome. Has anyone experienced a similar combination of brain fog, fatigue, facial pressure, and improvements in stiffness while taking LDN? I'm also wondering whether it makes more sense to try a dose lower than 0.5 mg rather than continuing to increase it.

Maybe I should just get over my fear of diluting it myself and go lower, or stop it altogether even though that would feel like giving up but might ultimately be what's best for my body.

I'm in the USA. For those of you that dilute at home to save money, how did you convince your doctor to prescribe the 50mg so you can dilute at home?

My teens just started on LDN too and the compounding fees are just too much on our budget.

I'm not worried about the math, or dilution process. It's pretty straight forward.

But I've brought it up to my doc before and he dismissed the idea. And with no counter argument I just left it at no.

But I could really use the cheaper alternative at this point.

Bonus question: how does the doctor write the script? Is it just 3 pills for a 30 day rx?

thanks all.

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 🥳🥳🥳

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.

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?

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 🫩😭

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.

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?

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!

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.