Ready to Give up on LDN

[belize44]

When I first started on this drug, I was amazed at how good I felt, and how my pain levels were reduced. But now, for some unknown reason I am not having the results I was enjoying before. My pain levels have gotten higher and I feel exactly the way I did before I ever started taking the LDN. It has been about five months since I started.

So for an experiment, I stopped taking it for two days, and felt better than I had in a long time, even though I am still in pain. I am puzzled about this development, and wonder if this has happened to anyone else here?

 

[*GG*]

Not sure that it matters, but what is your dosage? Did you move recently? Thinking perhaps your new digs are contributing some how? Mold?

GG

 

[belize44]

No, we haven't moved recently, although now that I have given this some thought, it may be some kind of delayed symptom of the reaction I had to a powerful antibiotic that I had taken. First it made me very ill, and then I got achy all over and that part hasn't quit yet. The dose of LDN I am on right now is .3 mg.

 

[*GG*]

No, we haven't moved recently, although now that I have given this some thought, it may be some kind of delayed symptom of the reaction I had to a powerful antibiotic that I had taken. First it made me very ill, and then I got achy all over and that part hasn't quit yet. The dose of LDN I am on right now is .3 mg.

0.3 mg?

GG

 

[Sushi]

@belize44 I've had to adjust my dose up and down over the years to get the results I wanted.

 

[JES]

No, we haven't moved recently, although now that I have given this some thought, it may be some kind of delayed symptom of the reaction I had to a powerful antibiotic that I had taken. First it made me very ill, and then I got achy all over and that part hasn't quit yet. The dose of LDN I am on right now is .3 mg.

With a dosage of 0.3 mg you would almost certainly not get any of the opioid receptor blocking and rebound effect from LDN, which is one of its main mechanisms and one way it reduces pain. The standard prescribed dosage is 3-4.5 mg, which blocks the opioid receptors for a few hours. I take 1.5 mg because more for me causes daytime fatigue (I had to work up to this dosage, but any less and my symptoms would come back almost certainly).

 

[belize44]

I guess I am getting impatient to feel better! I started at 1.5, but it was problematic, with flu like symptoms and poor sleep so I cut way back and started working my way up. And then for awhile, I was feeling so much better, pain wise. I was able to stand at the sink or counter without severe pain within minutes of standing there, LOL. Now it's like I never took anything! The trouble is that if I raise it another mg, It's like starting all over again with feeling sick and having poor sleep. We are planning a trip in two weeks, and I don't want to rock the boat, so to speak. Thanks for the input, though - it may just need more fine tuning.

 

[Cheesus]

I guess I am getting impatient to feel better! I started at 1.5, but it was problematic, with flu like symptoms and poor sleep so I cut way back and started working my way up. And then for awhile, I was feeling so much better, pain wise. I was able to stand at the sink or counter without severe pain within minutes of standing there, LOL. Now it's like I never took anything! The trouble is that if I raise it another mg, It's like starting all over again with feeling sick and having poor sleep. We are planning a trip in two weeks, and I don't want to rock the boat, so to speak. Thanks for the input, though - it may just need more fine tuning.

I'm currently at the beginning of my LDN voyage. I started at 0.5mg and got great results. Then I moved up to 1mg and it was too much so I backed off again. Then 0.5mg started to wear off so I moved up to 1mg without any negative effects. Then two days ago I moved up to 1.5mg as 1mg was wearing off.

As Sushi says, I think it takes a long time to get things right. I saw a post from someone who played around at low doses for a while and it kept wearing off. They finally ended up on 9mg (not so low dose naltrexone) and they have been quite stable there since.

Good luck! I am rooting for you.

 

[frog_in_the_fog]

I guess I am getting impatient to feel better! I started at 1.5, but it was problematic, with flu like symptoms and poor sleep so I cut way back and started working my way up.

I had to stop LDN at night because I started getting worse and was having sleep issues.

When I started taking LDN in the morning, wow what a difference! The pain is practically gone, and I feel okay a few hours each day. I am at 4mg currently. After an hour, I literally feel like I could float out of bed, where as when I first wake up in the morning, I feel like a ton of bricks. I am still wobbly, but at least I feel some motivation to do things.

 

[daisybell]

Just wanted to share my experience which is that although I had significant side effects initially, I have not had those when increasing my dose since. LDN seems not to help at all for some people, but if it does help, I think that playing around with the dose can be worth doing, and for me staying low was not the right thing. I now take three 4.5mg capsules daily, and get benefit from that.

 

[belize44]

Well, thank you for all the encouragement! I may be taking a break from it for a couple of weeks, because I still have to undergo surgery on my wrist. I don't know when that will be scheduled yet.

 

[bertiedog]

Even at a low dose of 1 mg it gave me very nasty side effects every time I took it. I would feel very dizzy and anxious for about 3 hours and I didn't get any benefits at all.

I was definitely a non responder but have done well on working on my gut, going gluten and dairy-free and taking lots of herbal antimicrobials. My average daily steps are up to almost 9000 now whereas they used to be around 7000.

Pam

 

[Paralee]

I hope your real strong antibiotic wasn't something you couldn't tolerate, @belize44

 

[Hugo]

I had to stop LDN at night because I started getting worse and was having sleep issues.

When I started taking LDN in the morning, wow what a difference! The pain is practically gone, and I feel okay a few hours each day. I am at 4mg currently. After an hour, I literally feel like I could float out of bed, where as when I first wake up in the morning, I feel like a ton of bricks. I am still wobbly, but at least I feel some motivation to do things.

Interesting and great that you have such a good result. What kind of pain did you have and is the pain gone for all the day or just a few hours aswell?