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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?

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radapanich | @radapanich | Nov 19, 2023
In reply to @smdawson540 "Has anyone had luck with having insurance cover LDN. It is quite expensive. I am thinking..." + (show)
@smdawson540

Has anyone had luck with having insurance cover LDN. It is quite expensive. I am thinking of reaching out to the manufacturer. I see a big difference in my exhaustion level when I take this. They gradually increased the dosage for me. I have vivid dreams but can live with that.

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The Mayo Clinic pharmacy mailed the LDN to me I live in NYC. My doctor called it in. Is was inexpensive.

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1 reply
smdawson540 | @smdawson540 | Nov 20, 2023
In reply to @radapanich "The Mayo Clinic pharmacy mailed the LDN to me I live in NYC. My doctor called..." + (show)
@radapanich

The Mayo Clinic pharmacy mailed the LDN to me I live in NYC. My doctor called it in. Is was inexpensive.

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Thank you! I will keep working with my Long COVID clinic to start providing the liquid form of this instead of just prescribing capsules.

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kentkemmerling1949 | @kentkemmerling1949 | Mar 25 1:36pm

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.

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10 replies
sailorswimmers | @sailorsrwinners | Mar 26 7:50am
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.

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So sorry to learn about your dizziness problem. I have the same issue from Long Covid-since 2023. I do take LD Naltrexone mitered to 4.5 mg once a day. It seems to help with fatigue but not so much with dizziness, I'm afraid. for me what helps the dizziness is not overdoing activity. When it starts, I have to stop and rest for a while. I understand your concern about putting an extra burden on your spouse. My husband basically does almost everything. I can do my own laundry and our towels and linens, do dishes once a day and I also pay bills. But he does the grocery shopping, makes dinner, and takes care of our outdoors. We have a housecleaner come twice a month; my husband usually vacuums as needed. I hate feeling like I'm not doing my share. Fortunately we are both retired. Good luck with the LD Naltrexone -having more energy does seem to keep the dizziness at bay.
longer

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sailorswimmers | @sailorsrwinners | Mar 26 7:51am
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.

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I meant LD Naltrexone compounded to 4.5mg, mot mitered

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kentkemmerling1949 | @kentkemmerling1949 | Mar 26 8:39am
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.

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Thanks for sharing your experiences. It helps me understand what I might expect.

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hicopd | @hicopd | Mar 26 1:31pm
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.

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My loved one has taken it several different ways. The cheapest way was her her to get a syringe and mix capsule contents with some water but she said it tasted awful.

We were able to get a compound pharmacy to make it in varying doses per bottle so she can adjust the amount she takes based on her symptoms.

The dizziness is helped by working with the POTS cardiologist and mostly she takes low doses of midodrine & beta blocker for that.

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1 reply
shirljk | @shirljk | Mar 26 3:44pm
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.

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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.

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3 replies
kgatlast | @kgatlast | Mar 26 4:21pm
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.

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My long Covid symptoms are mainly lymphedema of hands, feet, arms and legs. Been on low dose naltrexone for about 10 months. No improvement noticed.

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janetbender | @janetbender | Mar 27 7:15am
In reply to @hicopd "My loved one has taken it several different ways. The cheapest way was her her to..." + (show)
@hicopd

My loved one has taken it several different ways. The cheapest way was her her to get a syringe and mix capsule contents with some water but she said it tasted awful.

We were able to get a compound pharmacy to make it in varying doses per bottle so she can adjust the amount she takes based on her symptoms.

The dizziness is helped by working with the POTS cardiologist and mostly she takes low doses of midodrine & beta blocker for that.

Jump to this post

For pots dizziness I use compression knee socks and use hydration packs mixed with water (Liquid IV or TipTop - several brands). My balance is worse and a cane didn’t help - I’m not emotionally ready for a Walker. I use my little shopping cart when I go out and that helps.
I get very dizzy at my cat’s litter box and keep a folding chair next to it so I don’t bend as far.

I tried Fludro and then Midrdine - neither helped separately. Now I take the 2 pills together but not helpful…

I read about SGT - stellate ganglion block and vagus nerve stimulator which is non-invasive and clips onto your ear while you sleep. I’ll ask my doc next visit.

Good luck and don’t give up!

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