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Low dose Naltrexone

Dechi

Senior Member
Messages
1,454
I'm at about 5 weeks into LDN. I started with a lower dose at 0.5 mg and have slowly moved to 1.5 mg. So far, the only thing I notice is how much more tired I am in the morning, and my daytime fatigue is increased. Also seems to be making me feel emotionally flat. I am really not sure at this point whether to soldier on or discontinue it.

No idea how much its helping the muscle soreness, etc. because I'm sleeping so much and not motivated to do anything.

Rats.

It’s done the same to me. You really need to go very slow. Apparently it may take up to one year to make a difference, so you need to give it a chance to work.
 

Sparrowhawk

Senior Member
Messages
514
Location
West Coast USA
We are all so different, but I'll just say that the side effects I had while ramping up my dose by 0.5mg every two weeks all leveled off and then mostly disappeared after the 4th month (odd dreams/nightmares). I'm still seeing steady improvements now about 11 months in.

For the first several months some decrease in fibro pain, but nothing to write home about. The last few months I've been virtualy pain free - I play guitar for almost an hour without payback pain, when for the past several years I couldn't do more than five minutes a day without significant pain for days afterwards. This was not the case even after 5 months on LDN - only the past month I have that much leeway. This tells me tissue changes take a while to settle in. Same issue with trigeminal neuropathic pain - steadily less until I realize I haven't had to even think about it the past few months. I've also seen increased gut motility which was a primary reason I was taking it. Hoping you see similar benefits.

Note that some here, and others on the Yahoo LDN group, don't seem to need the fill 4.5mg, and do fine at lower doses. Again, we all seem to react slightly differently to it.
 

Rufous McKinney

Senior Member
Messages
13,216
Note that some here, and others on the Yahoo LDN group, don't seem to need the fill 4.5mg, and do fine at lower doses. Again, we all seem to react slightly differently to it.

I've taken 3.5mg consistently for about 4 years now. This took away a set of acute symptoms which are most unpleasant. When I ran out a couple of times, those start to return in about 5 days. So, I really appreciate the help it has provided.
 

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
It’s done the same to me. You really need to go very slow. Apparently it may take up to one year to make a difference, so you need to give it a chance to work.

Wow, that's a much longer term than my doc suggested for trial (2-3 months). I'm going to think about backing my dose down to 0.5 mg and just letting that stew for a while. I don't think I've gotten any of the endorphin rebound effect from it yet, maybe the key for me will be waiting until that happens and then trying to raise the dose. Its so difficult to read the tea leaves with this med.
 

Strawberry

Senior Member
Messages
2,100
Location
Seattle, WA USA
I started LDN a few months ago with .5mg pills. Once I hit 2.5mg, I suddenly found I was able to go patio furniture shopping. Yes, much of that required sitting in chairs to test them out for comfort, but I haven't been able to be in a store for years for more than 2-3 minutes. I was there for over an hour! And I went shopping both May 25 and June 8. But then I figured since I was doing so well I would quickly get up to 4.5 so I could get one pill (instead of 9!) because more is better, right? Big mistake. I lost all my energy that I was just gaining.

So now I have backed off to 2.5 again for two weeks, and I am starting to feel the life come back into my legs again. I won't be shopping this weekend though! But 4.5 is definitely WAY too much for me. I think I took 4.0 for 2 days before I realized it was too much and I needed to go backwards.

Also, a curious note to say... After I passed 3mg, I found myself not needing a blanket over me all day. I was HOT! To the point that my house temp had dropped to 65F and I hadn't noticed. It was wonderful not being freezing cold all the time in summer. Now my body is normalizing back to the old "cold all the time need blanket over legs," but I'd rather be cold with energy than comfortably warm with no energy. Note that I still had blue toes when I was hot...

Once people find a level that works, are you able to stay there? Or do you lose that gain eventually? I'm hoping I'm at 2.5mg permanently...
 

Sparrowhawk

Senior Member
Messages
514
Location
West Coast USA
I have not lost any gains, in fact I continue to see minute but additive improvements in things like fibro pain over time. Having read years of the LDN Yahoo group I've not seen anyone post about losing gains as long as you stay on LDN. Folks who do stop using it usually revert to previous condition within days -- and importantly a few cases of folks who don't always get back to the original beneficial effect when they restart.
 

Sancar

Sick of being sick ~
Messages
98
Location
So Cal USA
@nryanh94 _ In earlier threads posted there was a Pharmacy I think mentioned in Utah that would provide a Doctors consult for a fee then prescribe. I hope you find a Doctor soon. Especially if it really helps you. You need to stay on it. Keep going t hough threads and the LDN website. All the best!
 

Sancar

Sick of being sick ~
Messages
98
Location
So Cal USA
PRICING? Does anyone know of a compound pharmacy that is competitively priced? The pharmacy I have been using is getting higher & higher with each order. I order 3 months at a time to save $$ ~ THANKS!
 

pamojja

Senior Member
Messages
2,384
Location
Austria
Normal range for ESR with my lab is 3-10 mm/hr; optimal 0-15. And I saw it fluctuate a lot during the last 10 years. From lowest 3 to highest 130 (with a chronic bronchitis; 74 with a myopericarditis). Adding LDN a few years ago didn't raise it. But due to lack of such severe infections in the second half of these 10 years, average ESR actually halfed (from 30 to 15mm/hr).

But with 6 mm/hr you seem right in the middle of normal. So maybe in your case it indeed normalized your value.
 

stefanosstef

Senior Member
Messages
528
Why do you think that an ESR of 2-3 is too low?
Because I've read this is a common finding to a subgroup of cfs patients, esr of that value.Sure there must be a reason that red cells are falling so slowly, I dont say this is definitely pathological and neither does current medicine for whom only above upper limits there is a problem.
On the other hand my family has esr of 2-3mm too and they dont have cfs.
 
Messages
3
I need some advice and help please.

Has anybody experienced a bad reaction between LDN and Melatonin?

My husband has severe CFS and would Like to try LDN alongside his nighttime melatonin. He is cautious because he had a bad reaction between LDN and benzos. I know that some Doctors prescribe melatonin with LDN but I trust the experiences of the community more When It comes to CFS and drugs
 

Dechi

Senior Member
Messages
1,454
I need some advice and help please.

Has anybody experienced a bad reaction between LDN and Melatonin?

My husband has severe CFS and would Like to try LDN alongside his nighttime melatonin. He is cautious because he had a bad reaction between LDN and benzos. I know that some Doctors prescribe melatonin with LDN but I trust the experiences of the community more When It comes to CFS and drugs

I haven’t had any problems taking melatonin for sleep while on LDN.
 

Rufous McKinney

Senior Member
Messages
13,216
PRICING? Does anyone know of a compound pharmacy that is competitively priced? The pharmacy I have been using is getting higher & higher with each order. I order 3 months at a time to save $$ ~ THANKS!

I've paid around $81 plus $10 shipping for 90 from a compounding pharmacy in CA. They've not changed this price in - 5 years.
 
Messages
20
Hei guys

I take about 70mg oxicodone per day for pain management.
Would it make sense to start LDN anyway or is that a problem together?

Thank you very much!
Marco