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Low dose Naltrexone for POTS helping alot

Posted by eyja @eyja, Apr 2, 2023

Hello all. Hope lots of you are getting better.
My son has/had POTS. I put him on LDN and he is so much better. So wonderful to see - finally! And there are no side effects.
I think it´s also worth trying although the symtoms are other than POTS.
LDN is not evidence based yet, as is the case with any other medication. But the way I see it is: What ever works.
B.w. and take care.

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tgroff | @tgroff | Apr 19, 2023

I have been taking LDN for a few months now -and it has helped quite a bit with brain fog /concentration/ motivation issues. I started at 1mg the first month and bumped to 2mg at month 2. I still have occasional waves of issues, but less frequent.. Here is a link to a legit study on the efficacy of LDN on Long Covid patients.. My doctor used this to feel more comfortable prescribing it for this purpose. I brought this to here attention, as i had trouble getting her to research any remedies. She said - "ya.. that sounds good.. lets try it. " Oy - not helpful or reassuring - but at least she was able to prescribe it for me.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9250701/

FYI - I am also taking Duloxotene for 6 months -that has also helped. Not sure if I should stop that now that LDN seem to be helping more..

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2 replies
tgroff | @tgroff | Apr 19, 2023
In reply to @joeyt "How do you get a Doctor to prescribe this drug? Will insurance cover it?" + (show)
@joeyt

How do you get a Doctor to prescribe this drug? Will insurance cover it?

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Try showing this to your doc - It helped me convince her...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9250701/

My insurance is not covering it - since it has to be compounded. Makes no sense to me!

REPLY
tgroff | @tgroff | Apr 19, 2023
In reply to @tgroff "I have been taking LDN for a few months now -and it has helped quite a..." + (show)
@tgroff

I have been taking LDN for a few months now -and it has helped quite a bit with brain fog /concentration/ motivation issues. I started at 1mg the first month and bumped to 2mg at month 2. I still have occasional waves of issues, but less frequent.. Here is a link to a legit study on the efficacy of LDN on Long Covid patients.. My doctor used this to feel more comfortable prescribing it for this purpose. I brought this to here attention, as i had trouble getting her to research any remedies. She said - "ya.. that sounds good.. lets try it. " Oy - not helpful or reassuring - but at least she was able to prescribe it for me.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9250701/

FYI - I am also taking Duloxotene for 6 months -that has also helped. Not sure if I should stop that now that LDN seem to be helping more..

Jump to this post

BTW - it doesn't seem to be helping muscle and joint aches. It almost seems that those have gotten worse - I doubt that it is due to cause and effect, but my muscles are always hurting more now than before.

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Lucy | @welchllb | Apr 19, 2023

Does Mayo have a list of doctors that are specializing in Post Covid? Neurologists? Thank you. I'm from MI.

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db72 | @db72 | Apr 19, 2023
In reply to @prn2016 "In my reading up on LDN I found that it has been used for years for..." + (show)
@prn2016

In my reading up on LDN I found that it has been used for years for Fibromyalgia. I was diagnosed with FMS in 1998 by a rheumatologist. I told my doctor that even if it isn't effective for Long Covid, it may well help with my FMS. He was persuaded to prescribe LDN 1 mg x one month, 2 mg for the next month and he plans to increase it monthly up to 5 mg/month.

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@prn2016 - I've had ME/CFS since 1986 and have been on LDN for 6 years. LDN is not a cure, but it's the only thing I've ever taken that has made a significant difference. I've tried going off it twice and both times my symptoms got worse within several days.
LDN has helped lesson the pain from FM, CFS, and polyneuropathy. It dramatically improves my POTS and mood; eg sense of well being. And it helps my to sleep better. The only side effect is vivid dreams which I don't mind because it hasn't caused nightmares.
I started by slowly increasing from .5 to 4 mg and adjusted back down to find the sweet spot for me - which is now at 2 mg. Best wishes!

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eyja | @eyja | Apr 19, 2023
In reply to @tgroff "I have been taking LDN for a few months now -and it has helped quite a..." + (show)
@tgroff

I have been taking LDN for a few months now -and it has helped quite a bit with brain fog /concentration/ motivation issues. I started at 1mg the first month and bumped to 2mg at month 2. I still have occasional waves of issues, but less frequent.. Here is a link to a legit study on the efficacy of LDN on Long Covid patients.. My doctor used this to feel more comfortable prescribing it for this purpose. I brought this to here attention, as i had trouble getting her to research any remedies. She said - "ya.. that sounds good.. lets try it. " Oy - not helpful or reassuring - but at least she was able to prescribe it for me.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9250701/

FYI - I am also taking Duloxotene for 6 months -that has also helped. Not sure if I should stop that now that LDN seem to be helping more..

Jump to this post

Thanks alot.
Are you taking duloxetin for post COVID in particular?

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eyja | @eyja | Apr 20, 2023
In reply to @bebold "Never go higher than 4.5 and thats usually for a larger man? Less is more with..." + (show)
@bebold

Never go higher than 4.5 and thats usually for a larger man?

Less is more with this drug. It's not about taking it, it's about how your body kicks into gear when it wears off. The dose we take should wear off in 2-3 hours.

6mg might not be helping at all. Too high a dose. The least you can take, the better. Somewhere between 3 -4.5 is norm. Some take as little as 2.

He might do even better if you go back to the lower dose. At some point, it takes too long to get out of your system and your endorphins don't kick into overdrive like they should. It's not about what you take, the medication does nothing to help you, it's the sudden stop of the low dose overnight (usually) that is how it helps. Less is more.

It's curious you would see a specialist then not trust that the dose he prescribed is correct? I even wonder if 4.5 is high for a kid. (depends on his age and size.) 4.5 is really the highest one should be on. I've done so much research, seriously. There are tons of youtube vids. There used to be a Yahoo email group (don't know if it still exists) but there were some scientists on there that were on it and had amazing info. I picked brains for about a year before I went on.
Good luck.

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Thanks for the advise!
He´s 17, so he´s almost fully grown. My thought was that is given in much higher dosis for intoxication of heroin and such, so it should not be dangerous. But it´s true what you say, there is no benifit of a higher dosage.
Good luck!

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