Has anyone heard of low dose Naltrexone as a potential treatment?

Posted by prancer20 @prancer20, Aug 28, 2023

Has anyone tried low dose Naltrexone or CQ10?
The Long Covid Clinic at Scripps has not been very helpful, with the exception of the physical therapists. I am desperately trying to crawl out of this syndrome . I start feeling better then increase my activity and that is followed by fatigue. I will start the low histamine diet and see how that goes.

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

@bebold

I take LDN but have for years. Its a long term decision to make. You don't so much "try it." You kind of decide to do it for years or its not really worth trying. I hear people say they tried it for a month or 2 "and it didn't work." (They were also taking too high a dose. The smaller dose the better. Usually between 2.5 and 4 mg. You have to understand how it works and commit or not.

You kind of wont know if its helping for a year or more. I had objective data in that the amount of synthroid I needed went way down.

I'm alsk very leary of generic medz and naltrexone no longer comes brand name. Pharmacies are starting to sell it but you have to make sure they kniw how to make it including where do they source their powder and most likely, as with all generics, they use whatever is cheapest that month. But is it hard or coldpressed?

There used to be a great yahoo group expert consumers. I studied it for a year before going on it. I get the pill from an American lab (there is only one I think), smash it and mix it with 50ml of distilled water. 50mg in 50 mls equals one mg per ml and I take 4ml (equal to 4mg.) You must work yourself up very very slowly or you may experience side effects and quit I spent 2 months getting tp 3mg/night and stopped there for a couple if years.

Its a very very good antiinflammatory and I have lots of inflammation? Skip, a very knowledgeable pharmacist in S FL who supplies pills all over the US where he can, not NC last I heard, is great. He and his whole family, including teens take it aa it resets (supposedly) your immune system. Its more accepted now than it waa when I started taking it 5 years ago.

I went off for a few months after xmas this year and my thyroid went to uncontrollable again (hashimotos) and back on ldn, its still raking months months to get regulated again. And I didn't know it waa helping pain as much as it does, until I went off.

Ill never go off again. Mixing it myself, it costa me about $12 every year+. I'm a nurse and not all doctors will ler you mix it yourself. If yours will, I can give you more info on how I do it. Store in fridge etc.

Its a long term decision. If yoy aren't in it committed for at least a year or 2, don't bother.

As a nurse, I studied it for a year before making a decision. About 6 years ago maybe? I've gone off a couple of times and have always regretted it as you need to starr low again and it can take months to get back up to speed. Its 7 months since I went back on and I haven't gotten my thyroid back to normal yet. Good luck.

I'm a lifer. You kind if gave to decide to be one too. Taking it is a long term commitment. I've written lots about it here. There a tons of YT videos now by mds that there wasn't when I started.

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I have been on low dose naltrexone ie 4.5 mg daily for 8 weeks, combine with NAD (a supplement( as per protocol at Mayo climic). It has helped me significantly. My first prescription was from Mayo pharmacy, subsequent refills from a local compounding pharmacy.

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I've been taking LDN for 6 months. At 3mg now. I think it has helped with brain fog. I am also taking duloxotene, which helps also. I noticed a slight improvement when adding LDN. I have to have it compounded at a specialized pharmacy and it is $75/mo. There is a YouTube video on the theory, and a med study that helps convince a doc to prescribe it.

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Low dose naltrexone is often discussed in the Post COVID Recovery support group. You may also be interested in these related discussions:
- Anyone taking Naltrexone for Long COVID?
https://connect.mayoclinic.org/discussion/anyone-taking-naltrexone-for-long-covid/
- Low dose naltrexone for Post-Covid Recovery experiences?
https://connect.mayoclinic.org/discussion/low-dose-naltrexone-for-post-covid-recovery-experiences/
- Any research on low-dose naltrexone?
https://connect.mayoclinic.org/discussion/any-research-on-low-dose-naltrexone/

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I have just started taking LDN as I have a long hauler niece back east who has had good results with it....she was lucky enough to get in a long haul clinic so it was prescribed thru them. The recommendation is to titrate with it so I am taking a low dose and will very slowly work up to 4.5 mg.

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@kemmeries

LDN saved my wife's life

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Can you offer more details, such as her LDN dosage and what symptoms improved?

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@radapanich

I have been on low dose naltrexone ie 4.5 mg daily for 8 weeks, combine with NAD (a supplement( as per protocol at Mayo climic). It has helped me significantly. My first prescription was from Mayo pharmacy, subsequent refills from a local compounding pharmacy.

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Can you provide some info on what symptoms improved?

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Yes, low dose Methylene Blue is interesting also.

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I have been on LDN for Long Covid as post viral anti inflammatory. It is compounded at a well known pharmacy with high standards on preparation and cleanliness. So far I have not seen any improvement in my pain and I too developed burning in my arms. I am going to try to stick with the LDN though to see if it helps the bigger picture or until I cannot take the burning in my arms anymore. I have only been on the 4.5 mg dose since July 7th, 2023 and have had long covid issues since Oct 2022.

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@bebold

I take LDN but have for years. Its a long term decision to make. You don't so much "try it." You kind of decide to do it for years or its not really worth trying. I hear people say they tried it for a month or 2 "and it didn't work." (They were also taking too high a dose. The smaller dose the better. Usually between 2.5 and 4 mg. You have to understand how it works and commit or not.

You kind of wont know if its helping for a year or more. I had objective data in that the amount of synthroid I needed went way down.

I'm alsk very leary of generic medz and naltrexone no longer comes brand name. Pharmacies are starting to sell it but you have to make sure they kniw how to make it including where do they source their powder and most likely, as with all generics, they use whatever is cheapest that month. But is it hard or coldpressed?

There used to be a great yahoo group expert consumers. I studied it for a year before going on it. I get the pill from an American lab (there is only one I think), smash it and mix it with 50ml of distilled water. 50mg in 50 mls equals one mg per ml and I take 4ml (equal to 4mg.) You must work yourself up very very slowly or you may experience side effects and quit I spent 2 months getting tp 3mg/night and stopped there for a couple if years.

Its a very very good antiinflammatory and I have lots of inflammation? Skip, a very knowledgeable pharmacist in S FL who supplies pills all over the US where he can, not NC last I heard, is great. He and his whole family, including teens take it aa it resets (supposedly) your immune system. Its more accepted now than it waa when I started taking it 5 years ago.

I went off for a few months after xmas this year and my thyroid went to uncontrollable again (hashimotos) and back on ldn, its still raking months months to get regulated again. And I didn't know it waa helping pain as much as it does, until I went off.

Ill never go off again. Mixing it myself, it costa me about $12 every year+. I'm a nurse and not all doctors will ler you mix it yourself. If yours will, I can give you more info on how I do it. Store in fridge etc.

Its a long term decision. If yoy aren't in it committed for at least a year or 2, don't bother.

As a nurse, I studied it for a year before making a decision. About 6 years ago maybe? I've gone off a couple of times and have always regretted it as you need to starr low again and it can take months to get back up to speed. Its 7 months since I went back on and I haven't gotten my thyroid back to normal yet. Good luck.

I'm a lifer. You kind if gave to decide to be one too. Taking it is a long term commitment. I've written lots about it here. There a tons of YT videos now by mds that there wasn't when I started.

Jump to this post

Recently recommended I try this as well-I would greatly appreciate your pharmacy contact and measurements, please! As a fellow nurse, I am SUPER particular about my med quality and sourcing! Thank you for sharing your knowledge/experience!

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I am trying LDN. I started at 1.5 and then 3.0 for a few months with no noticeable improvement. I do have to take it in the morning to avoid insomnia. I have just recently started 4.5 and am seriously reconsidering it. I find myself taking deep breaths (anxious) and my sleep is horrible, not to mention daily headaches. I know it can take time but not sure it’s worth the trial period. I also take the gummy Coq10, no noticeable difference in my LHC symptoms.

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