• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

New to LDN

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I HAVE found my mood has improved most days,due i guess to those endorphins :)
Yes, that is the theory, so you don't want to block the receptors too long (most do best blocking them while asleep) and the slow release will keep them blocked much longer.

Sushi
 
Messages
25
The pharmacy ive been using ( Dickson in Glasgow) have supplied me with liquid LDN so far,but i'd like to swap to 50 mg tablets as it would work out much cheaper,just like you said @ Sushi
I think Dicksons in Glasgow only offer 3,3.5,or 4 mg tho - to buy 50 mg tablets i might have to use the internet as i live in the uk, but ive heard it isnt safe to purchase LDN online? And can i purchase it in uk anyway without a doctors prescription?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I think Dicksons in Glasgow only offer 3,3.5,or 4 mg tho - to buy 50 mg tablets i might have to use the internet as i live in the uk, but ive heard it isnt safe to purchase LDN online? And can i purchase it in uk anyway without a doctors prescription?
Any pharmacy in the US has 50 mg LDN as it is a standard, not compounded, medication for heroin abuse. Try Boots or someplace.

Best,
Sushi
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
.i hadnt made the connection that higher dose Naltrexone is available to buy over the counter.
In the States it is not available over the counter--it requires a prescription. But, most all pharmacies carry it as it is a common medication that is usually prescribed in 50 mg tablets.

Sushi
 
Messages
25
Reluctantly giving up on LDN after ten months trial
Have not really had any longterm positive helpful results with it
I am wondering has anyone else found this has happened..or has anybody come off it then found they felt significantly worse and took it up again?
 

Eeyore

Senior Member
Messages
595
@lizzywhizzy @Sushi

I tried it once as it seemed harmless and my doc recommended it (he uses it on a lot of his patients). I didn't really seem to experience any benefit at all despite taking it for a long time (can't remember now but over a year I think). I am skeptical that it is really bioactive in the way that has been hypothesized, but I don't know. In my case I didn't really notice anything obvious when I started it or stopped it, and I didn't notice it led to a long term improvement.

Based on my understanding of the theory, if the LDN people are right, it MUST be taken at night to work. Don't do other than your doc says without asking, but you can raise the question with the doc after getting informed. The idea is that your body produces endorphines at night, and that blocking certain opioid receptors prevents feedback inhibition. You then want the effect to disappear before the actual endorphines your body makes are meant to exert an effect, as naltrexone blocks both the feedback inhibition and the receptors that would allow the endorphines to work. Taking in the morning would therefore be counterproductive.

Truth be told, I'm not sure any of it is valid - but I strongly suspect that if it is, it must be done at night. Just because it did jack for me doesn't mean it would do nothing for others. I think I did 4 or 4.5 mg per night. I didn't have to ramp because I never felt anything either way.

Be careful on the dilution of a pill in water. Solubility is a concern - sometimes the bioactive medication may be a small fraction of the pill, and may have poor solubility in water. In these cases, you won't have an even distribution of the chemical in the water. It may work just fine, and rxlist.com says that the hydrochloride salt of naltrexone is soluble in water at about 100mg/ml, which would imply a 50mg pill would be easily dissolved in 100ml of water - but I'd run this by a doctor or preferably a pharmacist (and even more preferably a compounding one). I used to take mine to a compounding pharmacy and he'd make capsules for me. It was about $25/month or so all in, usually 100 at a time. Sushi's method may work just fine here, just pointing out that dilution in aqueous solution is not always that simple and you need to understand what you're diluting, its solubility, etc. - and get advice from someone trained to do that if you are not qualified yourself. (For starters, check if everything appears to fully dissolve - if it doesn't, that's definitely a concern, as you probably can't tell if it's the active chemical, binders, coatings, or whatever else.)

Lastly, naltrexone was a med that Dr. Jay Goldstein used to use sometimes. I always turn to Dr. Goldstein's works when I want to understand psychoneuroimmunologic mechanisms, as his understanding of psychoneuropharmacology in ME and related illnesses was unparalleled.

A few things he mentions (from Tuning the Brain):
(OXT = oxytocin)

Because OXT secretion is inhibited by mu-opioid agonists, naltrexone is a good way to stimulate it. Unfortunately, naltrexone cannot be targeted solely to oxytocinergic neurons and is infrequently used on a chronic basis in neurosomatic medicine. Many patients are exquisitely sensitive to it, perhaps because their endogenous opioids are decreased, at least in peripheral blood. Opioids often help neurosomatic symptoms, and each opioid has slightly different properties. There are multiple mu1-opioid receptors and splice variants, which makes it sensible to combine or rotate them (Pasternak GW, 2001).

Goldstein, Jay (2013-10-18). Tuning the Brain: Principles and Practice of Neurosomatic Medicine (Kindle Locations 9057-9061). Taylor and Francis. Kindle Edition

He also references a paper that describes that naltrexone may inhibit activity and alter expression of alpha7 and alpha4beta2 nicotinic acetylcholine receptors in hippocampal neurons.

Dr. Goldstein also used naloxone extensively, which is also an opioid receptor blocker, as it relieves constipation very effectively, regardless of the cause. (This makes sense - immodium AD which is taken for diarrhea is an opioid blocker.) However, naloxone (per Dr. Goldstein) isn't well absorbed through the gastointestinal tract.
 
Messages
25
@lizzywhizzy @Sushi

I tried it once as it seemed harmless and my doc recommended it (he uses it on a lot of his patients). I didn't really seem to experience any benefit at all despite taking it for a long time (can't remember now but over a year I think). I am skeptical that it is really bioactive in the way that has been hypothesized, but I don't know. In my case I didn't really notice anything obvious when I started it or stopped it, and I didn't notice it led to a long term improvement.

Based on my understanding of the theory, if the LDN people are right, it MUST be taken at night to work. Don't do other than your doc says without asking, but you can raise the question with the doc after getting informed. The idea is that your body produces endorphines at night, and that blocking certain opioid receptors prevents feedback inhibition. You then want the effect to disappear before the actual endorphines your body makes are meant to exert an effect, as naltrexone blocks both the feedback inhibition and the receptors that would allow the endorphines to work. Taking in the morning would therefore be counterproductive.

Truth be told, I'm not sure any of it is valid - but I strongly suspect that if it is, it must be done at night. Just because it did jack for me doesn't mean it would do nothing for others. I think I did 4 or 4.5 mg per night. I didn't have to ramp because I never felt anything either way.

Be careful on the dilution of a pill in water. Solubility is a concern - sometimes the bioactive medication may be a small fraction of the pill, and may have poor solubility in water. In these cases, you won't have an even distribution of the chemical in the water. It may work just fine, and rxlist.com says that the hydrochloride salt of naltrexone is soluble in water at about 100mg/ml, which would imply a 50mg pill would be easily dissolved in 100ml of water - but I'd run this by a doctor or preferably a pharmacist (and even more preferably a compounding one). I used to take mine to a compounding pharmacy and he'd make capsules for me. It was about $25/month or so all in, usually 100 at a time. Sushi's method may work just fine here, just pointing out that dilution in aqueous solution is not always that simple and you need to understand what you're diluting, its solubility, etc. - and get advice from someone trained to do that if you are not qualified yourself. (For starters, check if everything appears to fully dissolve - if it doesn't, that's definitely a concern, as you probably can't tell if it's the active chemical, binders, coatings, or whatever else.)

Lastly, naltrexone was a med that Dr. Jay Goldstein used to use sometimes. I always turn to Dr. Goldstein's works when I want to understand psychoneuroimmunologic mechanisms, as his understanding of psychoneuropharmacology in ME and related illnesses was unparalleled.

A few things he mentions (from Tuning the Brain):
(OXT = oxytocin)



He also references a paper that describes that naltrexone may inhibit activity and alter expression of alpha7 and alpha4beta2 nicotinic acetylcholine receptors in hippocampal neurons.

Dr. Goldstein also used naloxone extensively, which is also an opioid receptor blocker, as it relieves constipation very effectively, regardless of the cause. (This makes sense - immodium AD which is taken for diarrhea is an opioid blocker.) However, naloxone (per Dr. Goldstein) isn't well absorbed through the gastointestinal tract.
 
Messages
25
Thanks for yr response @Eeyore..sorry you also didnt get any real improvements..
It's quite a disappointment isnt it
I always took LDN at night and just stuck to ordering the liquid rather than tablets
I worked my way up slowly thru the dosages from November 2014, and was on 4.5 by April 2015
I then went down to 4 as 4.5 seemed a bit much..so i ended up on 4 from April til now
Very little improvement..some nights, got to sleep a bit more quickly than usual
Terrible nightmares all the way thru but then, i always did have them anyway.
I had blood tests to see if my underactive thyroid was working better on LDN ,but no, overall stayed about the same.
Looks like its back to the drawing board ! X