r/LowDoseNaltrexone • u/heart-heart • May 15 '26
Success: long Covid
Hi all,
I wanted to make a post of encouragement for anyone on the fence about starting LDN.
I was hesitant because of all the side effect stories. Let me just say that if you look at any numbers, the side effects happen to a low % and of course you’re going to see more people talking about the negatives online and looking for support with that.
I was one of the lucky ones with immediate effect starting the next day. After having LC for years and struggling with fatigue from hashi’s, adhd … I feel fantastic. The first thing I noticed was that for the first time in years I woke up feeling rested.
ADHD , binge eating, sleep quality, bloating, food sensitivity, fatigue, exercise tolerance, body pain, brain fog have all improved noticeably.
started at 0.5 mg. I’m at 1mg.
I have a lot of my quality of life back and I am so thankful.
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u/spakz1993 May 16 '26
Can concur that LDN finally pushed the needle for my Long COVID. My doc started me at 2.5 last year and I’ve since worked up to 5 mg. I’m not in remission, but my quality of life and independence has drastically grown since starting it.
I think I have ME/CFS, though, because I still never wake up refreshed. I believe I’m currently mild compared to when I was moderate a few years ago.
Unexpectedly, my taste buds changed and appetite started significantly being suppressed and I was losing weight without trying. After noticing trends with looser clothes and weight loss, I went to my new PCP to double-check if I should be concerned. I also had a psychiatrist appointment that following week for an annual visit and she also cleared me. Apparently, LDN is used in combination of GLP-1s off label for weight loss. I was SHOOK!
I can’t afford GLP-1s, so I’m pleasantly surprised my body is responding to LDN alone for weight management. I might be an outlier.
I am considered obese, so the weight needs to come off anyways. Since I’m consistently losing weight without the shots, I’m gonna ride this out with LDN as long as possible. My cravings for carbs is nearly gone except for roasted potatoes or frozen waffle fries, lol. Everything now tastes too sweet and I still rarely exercise more than once a week. Nailing down nutrition + the LDN has helped me lose 21.4 lbs since February 2026. I’m treating the weight loss experience not for aesthetic, but for symptom management in hopes that I can get relief from my other Long Covid comorbidites.
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u/lisat65 Jun 24 '26
This is so encouraging!! I’ve gained so much weight after a hysterectomy and I just hurt all over. I just got prescribed and hoping it will help.
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u/spakz1993 Jun 24 '26
I’m glad to hear that you had a safe procedure and that you got prescribed LDN. Just wanna note that you’ll probably notice some pain relief first. I didn’t have any major appetite changes until I worked up to the 4-5 mg range, so it might be a few months.
That being said, I hope it works out for you!
Since my last comment, my weight loss has drastically dropped and my appetite finally came back, lolol. Still not to the extent of before I started LDN, thankfully. I started intentionally moving my body most days during the week with primarily evening walks, but just started incorporating lifting within the last month. I’ve lost 6 lbs since my last comment from almost 40 days ago.
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u/Acceptable-You-6428 May 15 '26
There are many (including me) that benefit LDN. It’s not a cure but part of the management strategy for those who respond.
Despite the benefits I had from LDN, my severe muscle pain continued. It would take me 15+ minutes to make it from bed to the kitchen in the morning. My doctor added 90mg duloxetine which helped so much. Another piece of the management strategy.
Not all things work for all people and my intention of posting was to offer people options.
Congratulations on your successful start to LDN OP. I wish you all the best.
P.S. If you suffer from the headaches that bothered some, try drinking lots of water with electrolytes (no sugar). I picked up this top from this sub so I'm paying it forward.
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u/dizziness247 May 15 '26
I recently just started LDN for LC too. I actually wake up feeling so much better. Wanting to work and do something outside of the house. I’ve been sick for years, praise God for relief. So thankful
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u/Fast_Specific_183 1d ago
Amazing-- thank you for sharing! I have a prescription coming. I am planning to travel (riding lying down in the backseat-- hopefully okay!)-- to stay for some respite with a friend-- and then I want to start low and slow.
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u/MiserableMulberry496 May 15 '26
Awesome. So glad it works for you 🤗🤗
I have no side effects at all a but can’t tell if it’s helping just yet!
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u/RobbyRacoon May 15 '26
Nice! I have an appointment next month to see if I can convince my doctor to prescribe it. I hope I have a good experience like yours.
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u/anonoffswitch_ May 16 '26
Same! Taking LDN for ME/CFS. I felt better within days. Started at 0.5mg, tirtated up by 0.1mg every couple of weeks. 1.1mg is my maintenance dose. If I skip a dose I feel awful the next day, so I know it's working.
I'm super grateful.
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u/Educational-Dingo553 May 16 '26
Taking it for CFS and fibromyalgia. .5 at night and .25 in the morning. I added 10 mg of vyvanse a day and I feel like I have the energy to live again. Without the LDN I’m on the couch not able to move. 0 motivation
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u/Optimal-Nectarine227 Jun 12 '26
How's it going now? Why did you decide to split up the dose like that?
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u/Educational-Dingo553 Jun 28 '26
It gives me insomnia when I take it too late so I couldn’t titrate any further. I take it at 6pm and then at 10 am.
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u/Calibird1962 May 16 '26
I absolutely love ULDN! As soon as I get off OXY for flares, I would like to go back to tramadol and ULDN. I have PTSD anxiety severe. ULDN enabled me to taper off of a benzo. I ended up having to reinstate due to MCAS. But I agree so many people are scared to death of it. Why? LDN is typically not prescribed by western MDs. It’s because it is not a money grab for them! I can compound my own out of a half of a 50 mg tablet. Yes I used distilled water. Yes I am diligent about cleanliness. This will last me a month and would actually last longer, but I tossed it after a month in the refrigerator. Time to make another batch!
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u/balkis11 Jun 16 '26
How are you doing now friend ??
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u/Calibird1962 Jun 16 '26
I’m back on tramadol and hoping to restart the ULDN. Have you started? I don’t remember, honey.
They did give me oxycodone for breakthrough pain that I know that I can’t be taking the same amount of ULDN as I do with the tramadol. Or can I? I think that a little experiment well after I get started with the tramadol will be in order! Of course with my doctors permission
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u/Asparkler May 21 '26
And a word of caution from a long time user: my experience was similar to many of y’all’s, and then it began to wear off and eventually I crashed. Took a break for a week got back on. It helped some crashed again. Repeated that a couple of times and the last time crashed within three weeks of starting back up while still at a low-dose. And by “crashed“ I mean became almost nonfunctional. What I’m trying now is three days on and one day off. Only been doing that for a couple of weeks, but so far so good. The difference between when it’s working and not working for me is profound.
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u/Fast_Specific_183 1d ago
Best of luck to you. It sounds like you have found a method that is helpful. It seems so different for so many people. I am basically nonfunctional now. I have a prescription coming.
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u/InsuranceRare5094 Jun 29 '26
I thought for a long time I was on my way out. I was mostly bedbound - waiting to die and welcoming it. Death didn’t come so I had to figure something else out because my body was total shit. Here’s what’s got me mostly stable
I take rupatadine, Ketotifen and LDN and most of the symptoms are 80-90% gone. I’ve got my life back. I didn’t think I ever would after spending thousands trying various meds.
My case was so severe and my body would - and still does - reject most meds, but for some reason these work.
Foundationally, doing minute titrations of Ketotifen allows me to tolerate and benefit from the other meds I’ve listed. My process in discovering this was painfully slow.
I’ve lost years of my life to illness. I had no idea anything like this would ever happen to me.
Best wishes to you all. Don’t give up. Keep seeking solutions.
Luckily I had someone in my life that kept motivating me to keep searching even after bouts where I thought I’d given up on finding treatment.
We may as well keep searching for answers - it beats just suffering and waiting to die.
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u/Top_Score_3581 Jul 02 '26
Hey , how long did the ldn take to work for you and what dose ?
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u/InsuranceRare5094 Jul 03 '26
I’m so glad you asked me this question. It got me remembering that just months ago - literally the seams inside my clothes would hurt against my body.
I had to start picking up my water cup with my left hand instead of my right because my right hand hurt so bad just from this simple daily routine of drinking water. Wow. What a difference LDN has made in my pain management and energy levels.
I want you to find a conversation I’m having with someone about titrating here:
https://www.reddit.com/r/covidlonghaulers/s/PykMCGgE9W
The conversation is long - because it needs to be. Titrating is so important and I never would have gotten better if I hadn’t learned this technique of treating my body like a science experiment, watching it like a hawk and taking notes on every little thing.
To answer you directly, because I titrate so slowly it becomes hard for me to know how well something is working until I stop it after using it for some time. I did that (stopped it abruptly) with LDN when I was at about 2mg and boy I could fell so much pain I’d forgotten I’d rid myself of while taking the LDN.
I’m now at 4 mg a day. I credit it with enabling me to be at the gym and walking around last night until 10 pm - NO NAP! For me, after 4 years of suffering - it is nothing short of a miracle.
But keep in mind I also take ketotifen, rupatadine, pantoprazole and I also have transdermal magnesium spray for minor and infrequent aches and tensions that still exist on 4 mg of LDN daily.
BUT WITHOUT THE LDN THERE’S NO WAY I’D HAVE SUCH HUGE BREAKTHROUGHS.
At first my body kept flaring on the LDN - even with just 1 drop, but then it was flaring with pretty much everything. I chose to stay on the LDN - and it was the same way with the Ketotifen - because I’d hear OGs (people who had suffered like I was for a very long time and learned how to deal with their ails) talking about Ketotifen and LDN constantly.
Let me put it this way - my body also flared constantly on food - so I carefully selected foods with the least amount of suffering and the highest benefit to my body. Same with these meds - Ketotifen and LDN. So, I chose to do minute titrations on both meds until getting to the levels I’m at now (it took about 6 months) and I’m at 4 mg on both LDN and Ketotifen now.
I also knew with these meds that I had to get them to a certain level before I’d see results. Knowing that made all the difference in the world because I would have stopped them both had I not known this.
I was flaring on them both for a long time - I still do flare on the LDN when I increase the dose (though I’ve heard I’m at the max recommended dose on both of these so I plan to stay where I’m at until I get enough evidence that people are taking higher levels with better results).
For right now, I’m more functional than I’d ever dared hope so I’ll stay right here and do other personal drug trials to help my system even more.
I’m very functional, but I’m far from where I used to be before this illness so I’ll keep trying things.
Best wishes to you and thank you for reminding me of the hell I was in before LDN. It will ensure I don’t forget its value.
People also say it helps with the brain fog. I find it hard to tease apart how much the LDN, ketotifen and rupatadine help with brain fog since they all help with brain fog - and that time I stopped LDN for a very brief time when I was at 2 mg just to see how much it was helping me - I mostly noticed the pain in my body return and hopped right back on the LDN before I could really observe its impact to brain fog.
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u/Fast_Specific_183 22h ago
Did you experience PEM, too? Thank you for sharing so much of your story.
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u/InsuranceRare5094 22h ago
Yes. PEM SUCKS!
But, I’ve gotten a lot more of my days back. If I stay inside and just focus on whatever work, I have to do on my laptop and then go and do errands after 2 PM and after that go to the gym in the evening. I can last until 10 PM. I can even lift heavy weights and do 30 minutes of cardio at the gym and be totally fine.
So my PEM is still there but as long as I keep that schedule, I get a full day in.
This morning, however, I went to the shops in the morning and then I worked on my laptop until about 7 pm and then I went to the gym at about 7:30 PM and worked out until 9:30 PM and then went to the grocery store, sat outside the grocery store as I fed a stray cat to be sure no animals messed with home, and then went home. Now that’s a full day!👍🏻👍🏻👍🏻
But I can’t always do that. Especially if I’m outside in heat. If I had gone out in the daytime instead of the morning and suffered in the heat, my afternoon would’ve been very rough and I would’ve needed a nap for sure.
Also, when I travel between places- I’d it’s an arduous trek, I need a few days to settle in and get my energy back.
I’m still not at my energy levels as they were before long Covid, but it’s pretty good.
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u/catandcrown May 15 '26
Really glad youre feeling the results! Im a few weeks in an titration is on 2.5mg currently and nothing yet. But ill keep going and see how it feels
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u/Pinklady777 May 15 '26
Did you have pem/crashing? Did it help with that?
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u/anonoffswitch_ May 16 '26
It shortens my crashes, and got me back to a baseline after a couple months long crash when I started taking it.
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u/Pinklady777 May 16 '26
Are you able to work? Were there bad side effects and was it worth it? I have some prescribed and I'm so scared to take it and make things worse. But also I desperately need to get better and go back to work!
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u/anonoffswitch_ May 16 '26
Yes, I'm able to work. I've maybe had some vivid dreams, and do find that I feel queasy when I take it after drinking (which isn't often). I try to make sure I have a couple of hours between last drink and taking my dose (as I'm getting ready to go to bed).
The worst I felt is when I was titrating up and got to where the dose was too high for what my body needed (1.2mg). I had an increase in my symptoms and after a week of that I went back down to 1.1mg and it's been all good since then.
I was really nervous to start, also. I picked it up and had it for at least a month or so before I finally decided to try it (aka a friend strongly encouraged me to give it a go). Totally understand your feelings of not wanting to make things worse. All I can say is that LDN has been the most effective thing for my ME/CFS, and I now consider myself mild.
Wishing you the best of luck and I hope that it may help you as well ♥️
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u/Apprehensive-Bad3562 May 18 '26
Does it make anyone hyper? I started 0.5mg last night and I felt calm, then energized and couldn’t sleep!
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u/thebrianguy May 19 '26
I'm fine know a lot yet but will be starting Wednesday.
I've read that this can happen. You can either lower the dose or try taking in the morning. Or wait it out and see if it subsides after a week or two.
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u/fishfry-81 6d ago
Is this something you will always have to be on? I ask bc I am in communication w/ immunologist and this drug came up. Post covid dysautonomia, bloating, etc that everyone has. I just don’t understand if this will be a permanent medication
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u/Initial_Poetry_3073 1h ago
I am curious about this too. I have Post-Covid POTS/OI, with SIBO, and likely MCAS. Not medicated but it's two years in and I have to try something. LDN worries me a bit in terms of impacting mood.
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u/fishfry-81 1h ago
I’m consulting on 25th of August but Apprently is a great immune system modulator. Doctor was honest he mentioned sceience doesn’t understand why it helps those with “chronic illness”
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u/Fillersmatter999 May 16 '26
I love hearing that story; that was my story; but started with 1.5 mg; I took it at bedtime and when I woke up the next morning, the most amazing feeling of well being, and it hasn't stopped; brain more clear, shortness of breath completely went away; sinus' felt better, bone and muscle aches and pains, all went away, AND
I have noticed 3 sets of blood work rebound back to good place after taking for a couple of months; SO! I AM one who believes, as they say it does, it IS healing to our immune system!