1. < Post-COVID Recovery & COVID-19

Low dose naltrexone for Post-Covid Recovery experiences?

Posted by radapanich @radapanich, May 15, 2023

Does anyone have experiences with low dose naltrexone for long Covid symptoms of significant brain fog, post-exertional fatigue, joint pain, muscle pain - inflammation, insomnia. A few studies in late 2022 indicate that low dose naltrexone 4.5 mg is helpful . Do you know of a specific doctor in NYC who prescribes it?

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

wilsonanderson | @wilsonanderson | Mar 28 11:14am
In reply to @shirljk "Hello, I started taking Low Dose Naltrexone (LDN) probably 5 years ago. I take it fibromyalgia..." + (show)
@shirljk

Hello,
I started taking Low Dose Naltrexone (LDN) probably 5 years ago. I take it fibromyalgia and Chronic Fatigue. I believe it helps tremendously with the Fibromyalgia; I think the side effect on not having constant debilitating muscle and joint pain translates into less fatigue. When I had Covid in November 2023, I went to Mayo Clinic, the long covid program a number of months later. I was asked about taking the LDN, was it helping my Long Covid. I said I couldn't tell because I was on it before I got long covid. I believe that it does help, because I have not experienced a recurrence of pain. Fatigue increased for months, but that is more manageable now. Unfortunately, I don't think it helped with the dizziness, I agree that not overdoing it and pacing myself is the biggest help with that. I am quite sure I would have pain and headaches if I were not on LDN. I went off it twice at my doctors request, and the Fibromyalgia and general pain, headaches came back, which brought back more fatigue. He said he just wanted me to test it to remember why I'm on it. I am on the recommended 4.5 mg. for Fibromyalgia, took me several weeks to get up to that amount. In my experience, it is rather benign drug, I have no side effects and very low dose and is amazing for me to keep me out pain. And I don't take any prescription medicine except a compounded thyroid med, because I get side effects from any I have tried.

Jump to this post

I’m interested re. your last comment about ’compounded thyroid med’ suggesting your are hypothyroid and likely Hashimoto’s too? A Dr.Lowe ( now dead) who specialised in hypothyroidism believed under medicated T3 lead to fibromyalgia…but his protocol did not work for me. I have both thyroid ailments , plus fibromyalgia (and type 3c diabetes from septic shock/ acute pancreatitis), and had LC nearly 5 years. I tried LDN and cannabis oil before LC but no obvious change to pain/ fatigue, now LC has made the fibromyalgia worse and I’ve got dysautonomia ( postural hypotension with syncope, but high HR too), no sense of smell.…tried a wide range of LC supplements/ drugs without improvement and currently trying ‘low and slow’ vagus nerve stimulation device. I’ll give the vTENS device a good trial, and if no improvement will try LDN again. It’s so slow to try to do one hopefully improvement one at a time!

REPLY
Lucy | @welchllb | Mar 28 11:59am
In reply to @shirljk "Hello, I started taking Low Dose Naltrexone (LDN) probably 5 years ago. I take it fibromyalgia..." + (show)
@shirljk

Hello,
I started taking Low Dose Naltrexone (LDN) probably 5 years ago. I take it fibromyalgia and Chronic Fatigue. I believe it helps tremendously with the Fibromyalgia; I think the side effect on not having constant debilitating muscle and joint pain translates into less fatigue. When I had Covid in November 2023, I went to Mayo Clinic, the long covid program a number of months later. I was asked about taking the LDN, was it helping my Long Covid. I said I couldn't tell because I was on it before I got long covid. I believe that it does help, because I have not experienced a recurrence of pain. Fatigue increased for months, but that is more manageable now. Unfortunately, I don't think it helped with the dizziness, I agree that not overdoing it and pacing myself is the biggest help with that. I am quite sure I would have pain and headaches if I were not on LDN. I went off it twice at my doctors request, and the Fibromyalgia and general pain, headaches came back, which brought back more fatigue. He said he just wanted me to test it to remember why I'm on it. I am on the recommended 4.5 mg. for Fibromyalgia, took me several weeks to get up to that amount. In my experience, it is rather benign drug, I have no side effects and very low dose and is amazing for me to keep me out pain. And I don't take any prescription medicine except a compounded thyroid med, because I get side effects from any I have tried.

Jump to this post

I have been taking LDN (4.5 mg) since December. After 2 months, I found relief from my shortness of breath and lack of energy, enabling me to walk distances that I was not able to walk for the last 4 years. (Covid in August 2020) I do find that after walking, my legs are achy at night. Extra Strength Tylenol helps. I have been taking 50 mg of Imipramine for Fibromyalgia since before Covid. At one point, I weaned myself off it because there were studies that said it was not good for Long Covid - big mistake!! I am back on it and feel much better. With LDN, I still have problems with dizziness and balance. I do have POTS, IBS, etc. I'm not all better but am glad I walk distances again!!
Hope that helps!!

REPLY
kentkemmerling1949 | @kentkemmerling1949 | Mar 28 1:45pm
In reply to @kentkemmerling1949 "It was recommended to me to try this low dose naltrexone therapy to try to improve..." + (show)
@kentkemmerling1949

It was recommended to me to try this low dose naltrexone therapy to try to improve my long COVID symptoms. My primary problem is dizziness that leads to poor balance. I walk using a rollator most of the time for safety reasons. This limits my life a lot since I can't go far on the walker. We traveled, fished, hiked and just were active until COVID in 2020. Since then I have been basically trapped. I can't help around the house as much, which puts an unfair burden on my wife. I was told that this low dosage approach has been tried a lot. Has anyone out there done this and can you share your experiencs, both good and bad? Thank you so much.

Jump to this post

Thank you for that info. I am encouraged after your comments.

REPLY
carlosmayo | @carlosmayo | Mar 29 10:01am
In reply to @kentkemmerling1949 "It was recommended to me to try this low dose naltrexone therapy to try to improve..." + (show)
@kentkemmerling1949

It was recommended to me to try this low dose naltrexone therapy to try to improve my long COVID symptoms. My primary problem is dizziness that leads to poor balance. I walk using a rollator most of the time for safety reasons. This limits my life a lot since I can't go far on the walker. We traveled, fished, hiked and just were active until COVID in 2020. Since then I have been basically trapped. I can't help around the house as much, which puts an unfair burden on my wife. I was told that this low dosage approach has been tried a lot. Has anyone out there done this and can you share your experiencs, both good and bad? Thank you so much.

Jump to this post

Use the search function and you can find several other long threads about Naltrexone. I like Lucy found it very helpful.

REPLY
md11 | @md11 | Mar 30 11:34pm
In reply to @kentkemmerling1949 "It was recommended to me to try this low dose naltrexone therapy to try to improve..." + (show)
@kentkemmerling1949

It was recommended to me to try this low dose naltrexone therapy to try to improve my long COVID symptoms. My primary problem is dizziness that leads to poor balance. I walk using a rollator most of the time for safety reasons. This limits my life a lot since I can't go far on the walker. We traveled, fished, hiked and just were active until COVID in 2020. Since then I have been basically trapped. I can't help around the house as much, which puts an unfair burden on my wife. I was told that this low dosage approach has been tried a lot. Has anyone out there done this and can you share your experiencs, both good and bad? Thank you so much.

Jump to this post

Has anyone had severe muscle cramps on LDN?Started with 1 mg dose which caused dizziness and heart palpitations. Lowered to .1 mg and increased until
.5 mg but determined anything over .3 mg caused the muscle cramps. Have never heard of anyone else ever having any type of side effects from LDN. Definitely helped with pain but not fatigue. Thanks.

REPLY
1 reply
Athena Atkins | @athenaatkins | Mar 31 8:00am
In reply to @shirljk "Hello, I started taking Low Dose Naltrexone (LDN) probably 5 years ago. I take it fibromyalgia..." + (show)
@shirljk

Hello,
I started taking Low Dose Naltrexone (LDN) probably 5 years ago. I take it fibromyalgia and Chronic Fatigue. I believe it helps tremendously with the Fibromyalgia; I think the side effect on not having constant debilitating muscle and joint pain translates into less fatigue. When I had Covid in November 2023, I went to Mayo Clinic, the long covid program a number of months later. I was asked about taking the LDN, was it helping my Long Covid. I said I couldn't tell because I was on it before I got long covid. I believe that it does help, because I have not experienced a recurrence of pain. Fatigue increased for months, but that is more manageable now. Unfortunately, I don't think it helped with the dizziness, I agree that not overdoing it and pacing myself is the biggest help with that. I am quite sure I would have pain and headaches if I were not on LDN. I went off it twice at my doctors request, and the Fibromyalgia and general pain, headaches came back, which brought back more fatigue. He said he just wanted me to test it to remember why I'm on it. I am on the recommended 4.5 mg. for Fibromyalgia, took me several weeks to get up to that amount. In my experience, it is rather benign drug, I have no side effects and very low dose and is amazing for me to keep me out pain. And I don't take any prescription medicine except a compounded thyroid med, because I get side effects from any I have tried.

Jump to this post

I am on naltrexone at 2 mg a day, and I can second that it has helped with the fibromyalgia-like muscle aches and pains that Long Covid has caused me, but it hasn’t really helped me with much else (fatigue, autonomic dysfunction, chest pain, headaches). It’s a good tool for the LC treatment toolkit, but it is not a panacea for all LC symptoms in my experience.

REPLY
thisnthat | @thisnthat | Mar 31 9:48am
In reply to @kentkemmerling1949 "It was recommended to me to try this low dose naltrexone therapy to try to improve..." + (show)
@kentkemmerling1949

It was recommended to me to try this low dose naltrexone therapy to try to improve my long COVID symptoms. My primary problem is dizziness that leads to poor balance. I walk using a rollator most of the time for safety reasons. This limits my life a lot since I can't go far on the walker. We traveled, fished, hiked and just were active until COVID in 2020. Since then I have been basically trapped. I can't help around the house as much, which puts an unfair burden on my wife. I was told that this low dosage approach has been tried a lot. Has anyone out there done this and can you share your experiencs, both good and bad? Thank you so much.

Jump to this post

After restarting LDN (which I had taken prior to LC for autoimmune issues), I noticed an accelerated improvement in my parosmia. Still taking LDN, although not seeing much additional change….although my parosmia is now limited to just a few smells. Hoping tincture of time will take care of the rest!

REPLY
sandguy | @sandguy | Mar 31 1:53pm
In reply to @md11 "Has anyone had severe muscle cramps on LDN?Started with 1 mg dose which caused dizziness and..." + (show)
@md11

Has anyone had severe muscle cramps on LDN?Started with 1 mg dose which caused dizziness and heart palpitations. Lowered to .1 mg and increased until
.5 mg but determined anything over .3 mg caused the muscle cramps. Have never heard of anyone else ever having any type of side effects from LDN. Definitely helped with pain but not fatigue. Thanks.

Jump to this post

Wow!
You are taking very low doses!
The typical dosage, as per several trials and recommendations of LDN is between 1.5 and 5 mg.
I started out at 1.5, felt no effect and doubled it, and have begun a 4.5 mg regimen, still awaiting some effects.
I'm not trying to minimize you reactions--and I'm sympathetic--but you seem to be either extremely sensitive, or perhaps you might be allergic(?). Might you be on other meds that could cause a co-reaction?
It might not be a good choice for you; we all vary so much in what's helpful as well as with our symptoms (almost solely fatigue, in my case).
Best of luck, and thanks for sharing.

REPLY
View MoreView Less
Please sign in or register to post a reply.