Low-dose naltrexone (LDN) - how's it working for you?

[panckage]

@daisybell that is a very unusual dosing scheme that goes against the theory of how LDN works. Curious as to why you decided to take 2 doses a day?

 

[daisybell]

@daisybell that is a very unusual dosing scheme that goes against the theory of how LDN works. Curious as to why you decided to take 2 doses a day?

I started off slow and built up to 4.5mg, and then the effect of that seemed to wear off. So on the advice of my doctor I tried taking two capsules. Both together in the morning was the most effective. Then recently I had a review and the doctor suggested that since LDN seemed to work for me, and I am currently more active than I would like to be, to try taking a further capsule in the evening to see if it might help me prevent a crash... Which so far it does seem to be doing.

So, not-so-low dose naltrexone is now what I'm on!

 

[panckage]

@daisybell it's great that it's helping you! I guess you probably know but the theory with LDN is that it is supposed to suppress the opiod receptor for 4 hours and this causes the body to produce more endorphins/receptors or something

If your results hold it would imply a different mechanism is at work here

 

[daisybell]

I'm more inclined to think that it's having an immune modulating effect, and that it's also calming down the microglia in my brain. One thing it has possibly done for me also is stabilised my thyroid - I was hyperthyroid when I went on it, and my levels have been normal since....

 

[Lotus97]

A month or two ago I stopped LDN for a few weeks and then back on 4.5 mg. After that I became unusually tired and more recently the pain in my hands has been significantly worse.

I still don't know how much is from the LDN and how much is just staying up late and spending time at the computer. Based on my other posts, it seems like the last time I had this much pain it was a few months before starting the LDN..

I wasn't going to schedule another doctor appointment until I had my immune system tested. My doctor want to retest for Lyme since it was negative, but first we need to find out whats going on because how the immune system acts influences the results of the test. I feel like I need to do something soon because if the pain gets bad it can last months or even over a year.

 

[Lotus97]

I've had to reduce my dosage of LDN pretty far now, I was starting to experience some weird side effects described by others as "emotional flatness", I'm actually now down to an "ultra low dose" of 0.20 ml and it seems to be working better.

The dehydration has reduced as well as the perceived anhedonia, I'm back to being able to get straight out of bed upon waking as opposed to feeling dizzy, exhausted, with an unpleasant sensation of feeling very dehydrated all over, ranging from my eyes to my muscles.

My dry mouth issues have been worse it seems since going on the LDN. Does that happen with dehydration? I'm sort of grasping at straws, but I don't know what else to go on. So many symptoms and inadequate support from medical professionals.

 

[2Cor.12:9]

I've had to reduce my dosage of LDN pretty far now, I was starting to experience some weird side effects described by others as "emotional flatness", I'm actually now down to an "ultra low dose" of 0.20 ml and it seems to be working better.
.

After 7 months on LDN I had reduced my dose from 4. to 3. then to 1.0 but even 1.0 caused worse fatigue, heart palps, and generally feeling weird so I quit. After going off completely the side effects improved but within a few weeks the tendonitis came back with a vengeance.

After 6 weeks off LDN I couldn't stand it so I decided to give LDN one more chance on a lower dose .5. This time it has done wonders! The pain is nearly gone again, my energy and endurance has improved significantly and NO side effects - (except for vivid dreams the first couple weeks) I plan to stay on .5 indefinitely unless it stops working. Then I would probably just quit for a few days and try again.

It's too bad the top LDN advocates don't stress that some of us actually do MUCH better on these low doses. I would have never tried again if I hadn't been so desperate to relieve my neck pain.

 

[parabola]

I've been taking it for about 3 years now, I'm not sure if it's doing much but I know that I've not had a full blown crohns flare so it could be holding it off, I also get weird anxiety symptoms (which I used to get when I first got diagnosed with CFS) if I don't take it for a few days

 

[hamsterman]

I've been taking it for about 3 years now, I'm not sure if it's doing much but I know that I've not had a full blown crohns flare so it could be holding it off, I also get weird anxiety symptoms (which I used to get when I first got diagnosed with CFS) if I don't take it for a few days

Good to see another Cronh's sufferer here.

I just started 4 days ago, 2mgs... and its very powerful.... but only after 2:00pm... for 3 days in a row.... I have no idea why. I take it at 10:30 pm, and when I wakeup, I feel all the symptoms, just like always... fatigue, anxiety, gut issues, (moderate) muscle pain, etc... and then at 2:00pm... it goes away... and I feel better than I've felt in years. Yesterday I stood up and walked around for nearly an hour.... which would've killed me in the past.

 

[parabola]

Good to see another Cronh's sufferer here.

I just started 4 days ago, 2mgs... and its very powerful.... but only after 2:00pm... for 3 days in a row.... I have no idea why. I take it at 10:30 pm, and when I wakeup, I feel all the symptoms, just like always... fatigue, anxiety, gut issues, (moderate) muscle pain, etc... and then at 2:00pm... it goes away... and I feel better than I've felt in years. Yesterday I stood up and walked around for nearly an hour.... which would've killed me in the past.

Hello fellow Crohnie! I tried for months but couldn't get on with taking it at night- it put me into this weird 'twilight zone' insomnia for hours, and then disturbing dreams.. I now take it when I wake up and haven't noticed any obvious side effects that way

 

[hamsterman]

Hello fellow Crohnie! I tried for months but couldn't get on with taking it at night- it put me into this weird 'twilight zone' insomnia for hours, and then disturbing dreams.. I now take it when I wake up and haven't noticed any obvious side effects that way

Thankfully, I only got that Twilight zone insomnia the first night. But I think I'll try a different time, at a lower dose. I know there is potential, I just gotta learn how to tame this.

 

[parabola]

Thankfully, I only got that Twilight zone insomnia the first night. But I think I'll try a different time, at a lower dose. I know there is potential, I just gotta learn how to tame this.

Haha I love that you didn't even have to question what I meant by twilight zone insomnia, you just knew

 

[hamsterman]

Haha I love that you didn't even have to question what I meant by twilight zone insomnia, you just knew

Yeah, I think everyone has it.. and I wasn't prepared for it... I fell in and out of sleep all night... and had the same repeating dream of Voldemort giving me the Imperitus curse... ( I guess I shouldve known better than to watch H.P. before trying anything new)

 

[Misfit Toy]

I didn't realize there was a Herx with LDN. Not sure it is a good idea for me to take it right now.

 

[daisybell]

I didn't realize there was a Herx with LDN. Not sure it is a good idea for me to take it right now.

I'm not sure there is a Herx - doesn't that happen only with antibiotics and antivirals etc when the pathogen is dying off in large numbers and releasing toxins?
I got some side effects initially, but these were tolerable and wore off...

 

[Clerner]

Without ldn I would not be able to function. It has taken down the inflammation (high c4a) and extreme pain I was in. Without I would have to be on strong pain meds. Miracle drug for me!!!!!!

 

[Clerner]

I'very been on ldn since Jan 2016 and I love it. Every time I go to a new doctor, or even the disability doctors and psychologist I am asked if I have a drug problem because I'm on naltrexone! Lol. "Do you have an opioid problem"? I have to explain everything every time I mention it. Anybody else get that?

 

[joanna91]

Before I started on LDN, I had all the immunologic tests done-- lymphocyte subset panel 1, immunoglobulins, Nk cell function, immune cell function, CBC. Everything came back within normal range except NK Cell function which came back too low for the lab to measure it. (probably at 0 LU, they called and left a message for me to come in for a recollection)

Also, my inflammation levels were very high (elevated CRP and ESR). I was not diagnosed with any auto immune disorders.

So then I started on LDN 4 mg per night. My Nk Cell function has increased from 0 LU, to 6 LU, to 10 LU, to 23 LU, and I just recently had the testing done, I think it may even now be in the 30s.

Are my experiences with LDN unusual? It's improving my NK Cell function a lot. There's lots of people on this forum that say LDN has not helped them much or at all, which is kind of strange. It's helping to improve my immune system a lot even though I still have some symptoms that I'm dealing with like PEM, inability to handle stress, low energy, difficulty focusing, etc. All of that is slowly improving though.

 

[hamsterman]

I'very been on ldn since Jan 2016 and I love it. Every time I go to a new doctor, or even the disability doctors and psychologist I am asked if I have a drug problem because I'm on naltrexone! Lol. "Do you have an opioid problem"? I have to explain everything every time I mention it. Anybody else get that?

It's amazing that so few know about it. I got a strange look from my doctor as well when I mentioned it.

 

[hamsterman]

Just an update. Its been about 2 months... Its been up and down, but mostly up... and now I am starting to feel better almost the entire day. (initially it was just the latter part of the day). Im up to 5mg now. Brain Fog is significantly less. Energy level is up from a 3, to about a 5. I've almost entirely lost the wired but tired feeling. I dont know if this will continue.... but I sure hope so.