LDN - how's it working for you?

I've been on LDN for...


  • Total voters
    233
Messages
23
Likes
49
Bump.

Hi. I would just encourage those on this forum with any experience on LDN who have not yet cast a vote to do this poll.

Many people want to try out LDN at some point in their ME "journey". A lot of people starting out on LDN can feel symtoms flare-ups or different side-effects to various degrees. Any type of guidance would be beneficial. Increased poll respondents could better inform the users what to expect at the different stages. Maybe. Because we are all different. But you get my gist.

edit:
At over 40% response rate LDN must be one of the most effective treatments available to date?
(86 out of the 206 respondents have voted that LDN has worked for them after either 1, 3, 12 or 12+ months of use)

I've done three trials (2013, 2016, 2020) and not managed to get over the initial(?) heavy symptoms flare-up. When do you know how to 1. motor on, 2. adjust dosage 3. stop altogether?

I find it frustrating that an available, affordable, non-toxic treatment is right in front of my nose, but I can't manage to make it work.
 
Last edited:
Messages
8,035
Likes
19,844
I find it frustrating that an available, affordable, non-toxic treatment is right in front of my nose, but I can't manage to make it work.
I have had very positive experience generally and have used the same dose for about 4-5 years (3.5mg, bedtime).

I would call it a very effective treatment, but only in that it reduces the severity of certain really unpleasant symptoms.

On 2 occassions I ran out. Once, after 5 days, some of the unpleasant symptoms were returning, which you rather forget about when they aren't happening, because there is plenty of other discomfort to experience.

On the second occassion, I'm in southern Mexico and I think I can have it shipped/ forwarded to me. but NO Deal. I ran out for over 20 days. So I had like 8 left and 25 days more...so I took it like every few days. I was getting more and more of the symptoms intensifying and again, some of the super yucky symptoms returning.

So LDN has helped reduce the intensity of yucky symptoms that I'd describe as inflammatory. Swelling and pain.

I'm famous for feelling like I can't tell if something helps me or doesn't. So since I seem to have decided this is in fact helpful, I never want to run out. I've never taken a formal break,other than running out, nor have I varied my original dose.

*****

Perhaps some folks expect too much. Expect it all to go away, and for me its certainly hasn't and in some ways some of my symptoms are worse (neurological). But I can't blame the LDN for not helping that.

*****

Its hard to imagine how a research study could be designed that would capture and evaluate- effects when we seem to experience such a profound, diverse, body wide highly variable expression of our ME condition.

My teeth were being squeezed out of my mouth, for example. Is that a typical ME symptom? Does this happen to anybody else? Well, thats an example of my weird symptoms and its like 95% better.

Maybe these are all just downstream effects of some single aberation that research will someday- explain.

Until then: good luck to everyone. This is an endurance race.
 
Messages
8,035
Likes
19,844
I've done three trials (2013, 2016, 2020) and not managed to get over the initial(?) heavy symptoms flare-up. When do you know how to 1. motor on, 2. adjust dosage 3. stop altogether?
Can you explain a bit more about the types of symptoms that are flaring up?
 
Messages
16
Likes
20
Been on LDN for 9 months, started and 1.5mg at bedtime, couldn't handle the insomnia so switched to morning. It did help with fatigue a little bit. increased dose to 4.5mg where i'm at today. It's been a miracle in treating my constant runny nose (from a 10 to Zero) and I'd say it's improved my fatigue 20% maybe more. It's definitely worth to continue to take it me just for treating my runny nose, and for that fact alone I feel its doing something to my immune system maybe. Never had pain so can't comment on that. Not sure it's doing anything with my brain fog though.
 

sometexan84

Senior Member
Messages
1,004
Likes
1,831
Well, I've been on LDN about a month. I feel awesome. BUT, I've been pretty aggressive diagnosing and treating my CFS for the past 3 months. I'm currently on (3) antiviral treatments, not including LDN.

At this point, I almost feel 100%. So it's now impossible to contribute any single treatment like LDN to how I feel.

I just wanted to fix everything at once.
 
Messages
16
Likes
20
Well, I've been on LDN about a month. I feel awesome. BUT, I've been pretty aggressive diagnosing and treating my CFS for the past 3 months. I'm currently on (3) antiviral treatments, not including LDN.

At this point, I almost feel 100%. So it's now impossible to contribute any single treatment like LDN to how I feel.

I just wanted to fix everything at once.
Interesting , i'm just beginning to look into antivirals, which 3 are you on?
 

sometexan84

Senior Member
Messages
1,004
Likes
1,831
Interesting , i'm just beginning to look into antivirals, which 3 are you on?
Valacyclovir - for EBV and HSV-2
Azithromycin - for Streptococcus and C. Pneumoniae
Quercetin + Vitamin C - for Enterovirus and hopefully HSV-2

and the LDN of course, and some other supportive supplements
 

sometexan84

Senior Member
Messages
1,004
Likes
1,831
oh wow you jumped right on 4.5 mg?
Wait, sorry that's not true. I remember I did the standard LDN treatment protocol, increasing it twice to get to 4.5. I think it was 1.5 to start, then 3, then 4.5. But can't remember how many days between increases.

My bad!
 

mitoMAN

Senior Member
Messages
494
Likes
866
Location
Germany/Austria
I made this post about possible combinations with LDN that people already tried.
https://forums.phoenixrising.me/threads/ldn-combined-with-other-cfs-treatments.81039/

Would be happy if some of you contributed.

LDN and combination with other CFS treatments?

I am curious to hear about possible combinations that are "safe" with Low Dosed Naltrexone.
Given the option that LDN is tolerated well but not enough for relief.

Most of the time I read about people combining it with anti virals.

How about combining it with immunemodulators or other interacting medication?

For example Copaxone, Suramin and other "heavier" treatments?

I am interested to hear about your experiences!
 

bensmith

Senior Member
Messages
1,409
Likes
3,022
On 3 currently. Feels a bit better a bit nauseated. First month. Didnt see me in the poll. Basically like, 10 percent help? But still just as ill.

like still a 0 just less painful by a bit.
 
Last edited:

bensmith

Senior Member
Messages
1,409
Likes
3,022
Just commenting again. This is my first treatment that might be working a bit. Its really confusing because i honestly cant tell. Im sure thats normal but its weird. All other issues before cfs it was pretty obv. Now im like is this helping? Whats going on here.

any of yall have this with ldn or i guess in general? Where you dont know if you are getting worse or better. But prob worse lol.

i have had more obv improvemnts too like when i got corona again(24 hours. Maybe two points up. Maybe more). Thats more obv. With ldn i think i just feel a little better. Maybe very minor energy improvement. Overall im still the same sick thlougj?
 
Last edited:

sometexan84

Senior Member
Messages
1,004
Likes
1,831
Actually, I sort of felt the same way. Like it was hard to tell, but sort of got the feeling that I could feel LDN helping.

It probably is helping though. It has a lot of benefits. It's a pretty solid addition to your long-term treatment arsenal.