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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Low dose Naltrexone

alice1

Senior Member
Messages
457
Location
Toronto
thankyou ggingues..i just read an article saying it was only helpful if taken at night as well.
my regular sleeping pills were useless so i'll look into the ones you've mentioned.
tonight i'll take 1mg or 1/4mg..slow seems to be key for us.
 

leaves

Senior Member
Messages
1,193
Update: I can say that the LDN helps my sleep quality; no more dozing in the morning; I just wake up and get up. So thats good! Nothing revolutionary though, but next week Ill up my dose to 3 mg!.
Oh and my headaches have disappeared, so I guess that was just an adjustment response.
 

oerganix

Senior Member
Messages
611
oerganix i believe it was you that mentioned some people find that taking ldn in the day worked better for them regarding energy.that wouldn't contribute to the early hours of the endorphin uptake though.
i think i'm just speaking out loud because of the energy it gave me during the night which i'd love for day.
trial and error i suppose on the night dosage.

Yes, Dr Bihari has said he is sorry he started that "rumor" that it could only be taken at night. The other famous doctor, whose name escapes me right now, has never said you can only take it at night. They both now say to try it at night, and if that doesn't work for you, change the time so that your high energy time is when you want it, not when you want to be sleeping. So, give it a try and see if that works better for you.
 

alice1

Senior Member
Messages
457
Location
Toronto
i cut the 2mg into 3 parts and only woke up a couple of times but fell back to sleep.i'll do this for a few nights then up it again.
to have the energy for day is great but the interview that dr bihari gave about your own body creating those endorphins seems to good to not give it my best.
i'll keep at it.
leaves how great your headaches have gone.thankyou oerganix for the info.
 
C

Cloud

Guest
Well, I put a 3.5mg capsule of LDN in a 3cc syringe with water. 1/2cc = ~0.6mg. I still have it setting in my frig scared to touch the stuff now. That crash last week from the 1.5mg lasted 3 days and felt worse than I have for years. I am considering what you all say....."go low and slow", but I am still reluctant. I don't mind having to endure a crash if it's to determine something like this......but, that crash felt pretty bad....more like being headed for a relapse. Did you guys feel like this when you over did it?
 

Resting

Senior Member
Messages
116
Hello, I'm new here but saw the post about LDN. I have been on it but didn't know anyone else who took it for CFS. I started full dose and had complete insomnia that night. My doctor told me to take it in the mornings if that happened so that is what I do. 4.5 mg in the AM. I find that it helps with increased mental clarity and a tiny amount of increased energy. But after 2 weeks it stoped helping. So I go off it for 1 week and then start it up again to get the benefits. This cycle seems to work right now. But everyone is different. Each person probably has it help differently or not at all. That is odd that people are having trouble with bugs and whatnot since it is an immune booster. That seems backwards but that's CFS for ya!
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Before and After LDN--photos

Hi Everyone,

I have occasionally mentioned a friend with CFS who responded well to LDN. We took a photograph of him yesterday and paired it with one taken 8 months ago before he began LDN.

I know this looks like a Charles Atlas ad, but tis real. The increase in weight and muscle is due to his increased stamina, ability to do anaerobic exercise and ability to recover from exertion.

Well, pictures speak for themselves! :victory:

Sushi

P.S. Click on photo for larger image
before-after LDN &#.jpg
 

oerganix

Senior Member
Messages
611
Hi Everyone,

I have occasionally mentioned a friend with CFS who responded well to LDN. We took a photograph of him yesterday and paired it with one taken 8 months ago before he began LDN.

I know this looks like a Charles Atlas ad, but tis real. The increase in weight and muscle is due to his increased stamina, ability to do anaerobic exercise and ability to recover from exertion.

Well, pictures speak for themselves! :victory:

Sushi

P.S. Click on photo for larger image
View attachment 2163

If you double click one of them, they will both expand to fill your screen...or at least that's what happens with Explorer.

Thanks, Sushi.
 
C

Cloud

Guest
I would think the PWC reaction to LDN should be quite intriguing to researchers. Normies (those without cfs), take up to 50mg as a narcotic antagonist and feel nothing at all, except the cessation of the narcotic's effects. We take 1/100th of that dose and go into a full blown tail spin. As far as I know, no other drug/substance does that to us to that extreme. This seems very diagnostic and a useful tool for research. Anyone have any good links to studies along these lines?
 

Frank

Senior Member
Messages
850
Location
Europe
*Sushi i look like the first picture, i'll start LDN within a few weeks, hoping to look like the second one, in a year.
*Cloud, dozens of projects going on in this area, this is probably one of the best websites for sientific information on LDN: http://www.ldnscience.org/
 
C

Cloud

Guest
*Sushi i look like the first picture, i'll start LDN within a few weeks, hoping to look like the second one, in a year.
*Cloud, dozens of projects going on in this area, this is probably one of the best websites for sientific information on LDN: http://www.ldnscience.org/

That's Great Frank, thank you. I knew there were many studies on LDN effectiveness in ME/CFS......but I wasn't aware of any studying why.
 

sela

Senior Member
Messages
122
Location
marin co, ca
i have been taking ldn for a year. it hasn't done much of anything for my cfs but it has improved my sleep. also, if i quit for a few days i miss it. i feel a bit flat and am relieved to get back on it. i found a valuable tool . milk thistle. if you find that it works well for you but then you start having sleep problems or some other problems, AFTER having a positive reaction, it may be because it isn't clearing your liver. i had sleep problems. milk thistle fixed this immediately.
sela
 

Diva55

Member
Messages
164
Location
UK

For me LDN right now is my mainstay, having gotten HUGE beneffits from it...

Regards,
Sergio

Hi Sergio
Great to hear you have got benefits from LDN.

How long have you been taking LDN and what dose?
Can you let us know what benefits you have seen and how quickly they occurred. It's always interesting to hear other peoples stories.

Are you still doing Rich VanK's simplified Methylation Protocol?

Best wishes
Diva
 

Diva55

Member
Messages
164
Location
UK
Hi Sela
Good to read that LDN has helped your sleep.
Thanks for the reminder on Milk Thistle (or indeed any liver support). It makes sense that LDN needs to clear the liver. The liver is usually "clogged" with most of us.

I didn't do so well with Milk thistle but have Sam-E which I will re-start as it supports the liver & helps mood.

Best wishes
Diva
i have been taking ldn for a year. it hasn't done much of anything for my cfs but it has improved my sleep. also, if i quit for a few days i miss it. i feel a bit flat and am relieved to get back on it. i found a valuable tool . milk thistle. if you find that it works well for you but then you start having sleep problems or some other problems, AFTER having a positive reaction, it may be because it isn't clearing your liver. i had sleep problems. milk thistle fixed this immediately.
sela
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hi Sergio
Great to hear you have got benefits from LDN.

How long have you been taking LDN and what dose?
Can you let us know what benefits you have seen and how quickly they occurred. It's always interesting to hear other peoples stories.

Are you still doing Rich VanK's simplified Methylation Protocol?

Best wishes
Diva

Hi Diva,

Sergio asked me to reply on his behalf as he is super busy right now. If you remember my history with LDN, his is more or less the same. He is the one who introduced me to LDN. Basically, he started at 1.5 and rose to 4.5 over 4 or 5 months. His benefits were very impressive, taking him from bedridden to able to go out several times a week to shop or exercise at the gym. His stamina and ability to gain weight and muscle improved a lot--also greatly improved immune function. He has been taking it about 8 months.

He has had difficulty continuing Rich's protocol due to a developed intolerance to the folates. He will soon see a new doctor (who is in touch with Rich) in hopes of working through this block and other issues.

Sushi
 

Diva55

Member
Messages
164
Location
UK
Hi Sushi
How nice of you to update me on Sergio's behalf. I hope it's the Sergio I'm thinking of - he hosted a support board for Rich's potocol & lives in Spain?

His progress is amazing in only 8 months. It must be like a miracle for him!
To go from bedridden to the gym is wonderful and gives us all inspiration.

Yes the Methylation protocol can be hard and a lot to consider once you get past the basics.

Thanks again for the update. I hope you are doing really well too!

Best wishes to Sergio & you

Diva
Hi Diva,

Sergio asked me to reply on his behalf as he is super busy right now. If you remember my history with LDN, his is more or less the same. He is the one who introduced me to LDN. Basically, he started at 1.5 and rose to 4.5 over 4 or 5 months. His benefits were very impressive, taking him from bedridden to able to go out several times a week to shop or exercise at the gym. His stamina and ability to gain weight and muscle improved a lot--also greatly improved immune function. He has been taking it about 8 months.

He has had difficulty continuing Rich's protocol due to a developed intolerance to the folates. He will soon see a new doctor (who is in touch with Rich) in hopes of working through this block and other issues.

Sushi
 

alice1

Senior Member
Messages
457
Location
Toronto
well i've decided to try it in the day.my mornings are pretty good then i'm bagged and then start to get depressed.i think it's not getting a solid sleep which i can't do so tonight i'm skipping it and hope to sleep like a baby..or at least like a somewhat normal person.
it's inspiring to hear the success stories...keeps me going.thankyou for sharing them!!
 

Diva55

Member
Messages
164
Location
UK
Hi Alice
Good luck with trying the morning dose. I've read that people have tried it in the morning if they can't cope with the initial insomnia.
Some people are adamant that it won't work if you take it in the morning but others say it works for them - so hard to get a true picture but I guess it's just down to the individual response as usual!

Let us know how you get on
Diva
well i've decided to try it in the day.my mornings are pretty good then i'm bagged and then start to get depressed.i think it's not getting a solid sleep which i can't do so tonight i'm skipping it and hope to sleep like a baby..or at least like a somewhat normal person.
it's inspiring to hear the success stories...keeps me going.thankyou for sharing them!!