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.

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Yes I tried it but sorry to say I had no improvement. I started with 1mg for one month. 2mg for two months and then into the second month at 3mg my arms felt as if acid had been poured on them. The burning would last for hours. My doctor said for me to stop taking it. When I did the burning stopped. It still may help you.

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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 tried it, no effect for me

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Yes I agree with what you are saying but this was not a generic and did not come from CVS. It was compounded from a pharmacy that compounds meds. It not cheap and came from another city. Yes most of our meds come from China and India.

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Yes, this was suggested by one of my doctors in the long covid clinic.

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Yes I have been taking a compound by a pharmacy in a neighboring town by prescription from local Dr.I started at 1 1/2 and am now at 3 mg and it has helped me with arthritis and nerve pain.

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My child with mild POTS' doctor prescribed it for them for fatigue and brain fog based on some positive results they've seen using it in long covid. I think it is also used in ME/CFS sometimes. It's only been several months and my child doesn't think it's helping yet, but some say you have to give it up to a year.

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I have been taking LDN since January for long Covid. I don’t see any difference except, miracle of miracles, my IBS-D has disappeared. I’ve had it over 20 years. One other thing, my MD put me on Adderall (low dose) for the fatigue and it is definitely helping with that. I do not have ADHD and have never taken anything like this before.

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@misslauren

Yes I tried it but sorry to say I had no improvement. I started with 1mg for one month. 2mg for two months and then into the second month at 3mg my arms felt as if acid had been poured on them. The burning would last for hours. My doctor said for me to stop taking it. When I did the burning stopped. It still may help you.

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Low dose Naltrexone was prescribed for my brain fog. There was no improvement. I had graduated up to 4mg.
Everything works differently for individuals, so go for it!
There were no bad side effects for me. I have discontinued.

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