LDN low dose naltrexone, what's the latest?

[Cort]

WS

@Folk I have discovered that there is a huge difference in my results depending on when I take it.

When I tried it last year i was taking it at 8 a.m. (no sleep if I take it at night). This time I have experimented. I took it at 4 a.m. 6 a.m even 5 a.m. But the perfect time for me is 5:20-5:30 am. The difference in how I feel is huge.

Even if I don't get back to sleep, which I usually don't, I'm awake and up by 7:30. I used to lay in bed in a coma and have to drag myself out. I couldn't function for hours.

I have more energy, mentally and physically. My pain has decreased a huge amount. Inflammation in my brain and lungs are down. Fog is better. It's pretty incredible.

I have to be careful. If I overdo it I can feel things flare, brain fog gets worse, pain gets worse, I get wiped. Yesterday I had to go out at 9 a.m. I was gone 1 1/2 hours and spent the day on the phone, copying, faxing and dealing with a huge problem. I expected to be bad today. I wasn't. I'll see how tomorrow is.

Understand, I'm not going to run laps or even go shopping. But for me, this is pretty big.

I'm currently on 2 mgs. My doctor has told me only to go up to 3.5. I'll increase when I have to make a new batch.

Wow Minx - Congratulations, I am so glad that you've been experimenting and are passing this along. I'm going to add this to the blog.

Continued good luck!

 

[Who Me?]

@Cort. Yeah it was a surprise to me too. Who knew?

It's not perfect. I am paying for all I did Wednesday, but the PEM doesn't feel as bad. The key is figuring out when the endorphin rush is.

I'm also going to experiment today with dual dosing. I think you mention it in an article and someone told me about a study from some university in Alabama which I haven't found yet.

I'm hoping that splitting the dose will help me later in the afternoon and evenings when I become symptomatic again. I'll let you know.

I'm also trying a new way to make my batch. I used to use a mortar and pestle to crush the pill but someone said they just drop the tablet in the 50 ml water, let it go for a few hours and it dissolves. Although I do find something cathartic about crushing the pills, days like today, much easier to toss it in my bottle and let it go.

 

[Prashanti]

I have taken LDN for several months now. I did need to slowly build up the doseage. At first I felt I had my life back again...more energy, elevated mood, better sleep less pain. Then it leveled off and back to where I began EXCEPT I do have less pain...so much so that I had forgotten how the pain was. I have had the same process with other things...like B-12/methyfolate shots.....started out great then leveled off to seem to have no effect.
Does anyone else have the same reaction?

A specialist in CFS told me that some patients have to go up to 9mgs (I am at 4.5) or they need to stop it for awhile and then go back on the LDN.
Have any of you tried going beyond the 4.5mg dose?

I have purchase compounded LDN and have had varying results from different orders. It felt like there was some inconsistancy in the product. The first batch I had severe pain at the base of my skull. I have not had that with any of the other 2 batches. One batch seemed to work better than another. When I called the pharmacy I got different replies. One pharmacist told me one batch was probably too old. Another pharmacist said it was because I had chronic fatigue that the LDN worked inconsistantly. I didn't really feel they knew what they were doing even though it was a pharmacy listed in the LDN website. I changed to Skips pharmacy...we'll see if it feels more consistant.
Do any of you feel there is inconsistancy in how LDN works for you if you have CFS or Fibro? Was that pharmacist correct?

 

[Who Me?]

i don't buy what the pharmacist said. Sounds like he's just making excuses. The point of compounding pharmacies is consistency. The same formula, same ingredients same result.

Have you tried getting the 50 mg naltrexone and making your own? That's what I do. It's much cheaper.

I don't know anyone taking more than 4.5. I think at some point it may not help but I don't know for sure. My NP told me no more than 3.5 mgs. I don't know why. I'll ask about higher.

Someone told me today that it had a cumulative effect that takes about 6 months to reach.

Have you tried changing the time you take it? Just a thought. Also try split dosing. I did that today. I didn't notice anything but I had PEM today. Although now that I think if it by now I would be in a lot more pain and I'd be crashing bad. So maybe?

 

[Who Me?]

I lowered my dose to 1.5 yesterday and I had a significant reduction in pain although I was so sleep deprived I still felt horrid.

Today, thanks to the wonders of phenibut, I slept great and today is the best day I've had in ages. Except for the buzz I still have going I feel almost "normal". I even made 3 phone calls and I'm not tired. yah!

 

[IrisRV]

Have any of you tried going beyond the 4.5mg dose?

Yes, I'm at 9.0mg now. I'm still undecided whether it's significantly better than 4.5mg. At this point I'm thinking that my cognitive function is definitely better at the higher dose, but that's a symptom that's harder for me to judge if it changes over a period of months.

I have purchase compounded LDN and have had varying results from different orders. It felt like there was some inconsistancy in the product. The first batch I had severe pain at the base of my skull. I have not had that with any of the other 2 batches. One batch seemed to work better than another. When I called the pharmacy I got different replies. One pharmacist told me one batch was probably too old. Another pharmacist said it was because I had chronic fatigue that the LDN worked inconsistantly. I didn't really feel they knew what they were doing even though it was a pharmacy listed in the LDN website. I changed to Skips pharmacy...we'll see if it feels more consistant.
Do any of you feel there is inconsistancy in how LDN works for you if you have CFS or Fibro? Was that pharmacist correct?

Mine has been very consistent. One thing to consider is different carriers. They're mixing the LDN with something to fill the capsule. Maybe if the carriers were different and you are reacting to one of the carriers, you'd notice a difference. Just a thought.

I'll bet Skips will be consistent.

 

[Who Me?]

@IrisRV Do you take it all at once? I've been tossing a split dose but I need my 3ml syringes so I can measure more easily.

Also my NP told me no more than 3.5 so if I needed to go to even 4.5 I'd have to show her where it's standard.

 

[IrisRV]

@IrisRV Do you take it all at once? I've been tossing a split dose but I need my 3ml syringes so I can measure more easily.

Also my NP told me no more than 3.5 so if I needed to go to even 4.5 I'd have to show her where it's standard.

I was told to start with splitting the dose, if I could tolerate it. I couldn't. So I take the whole dose at once.

I am very sensitive to bitter taste. I can't even tolerate coffee. It was a misery to get the liquid down, even at a very small dose. Now I get it compounded into capsules, which is significantly more expensive, but no problem to swallow. I sincerely doubt I could take even the 4.5mg dose without choking it back up again. The stuff is NASTY (to me, at least).

I have no idea if the 9.0mg dose is standard. I suppose you could look on MS and chronic pain sites. People take lots more naltrexone than that in one dose if they're taking it for addiction, so I can't imagine it isn't safe to take 9.0mg. Whether it has the same effect at 9.0mg as at 4.5mg, I really don't know.

 

[Who Me?]

I was told to start with splitting the dose, if I could tolerate it. I couldn't. So I take the whole dose at once.

I am very sensitive to bitter taste. I can't even tolerate coffee. It was a misery to get the liquid down, even at a very small dose. Now I get it compounded into capsules, which is significantly more expensive, but no problem to swallow. I sincerely doubt I could take even the 4.5mg dose without choking it back up again. The stuff is NASTY (to me, at least).

I have no idea if the 9.0mg dose is standard. I suppose you could look on MS and chronic pain sites. People take lots more naltrexone than that in one dose if they're taking it for addiction, so I can't imagine it isn't safe to take 9.0mg. Whether it has the same effect at 9.0mg as at 4.5mg, I really don't know.

I've been feeling really foggy the last few days on 1.5 mgs. After lowering it from 2 because of major pain. It feels like there is an extra level of neuro cog crap where it's even harder for me to understand what is going on.

I'm going to go back down to 1 mg just to see. I had a few really good days, then overdid. But now I can't seem to get the same results no matter what i do.

Yes the taste is vile but I just drink some water after it. It's not any worse than getting a trazodone stuff in your throat. At least to me.

OH what do you think about sublingual? Unless you're supposed to do that? @Paw ask and you shall receive.

 

[IrisRV]

I've been feeling really foggy the last few days on 1.5 mgs. After lowering it from 2 because of major pain. It feels like there is an extra level of neuro cog crap where it's even harder for me to understand what is going on.

I'm going to go back down to 1 mg just to see. I had a few really good days, then overdid. But now I can't seem to get the same results no matter what i do.

Yes the taste is vile but I just drink some water after it. It's not any worse than getting a trazodone stuff in your throat. At least to me.

OH what do you think about sublingual? Unless you're supposed to do that? @Paw ask and you shall receive.

It's interesting that LDN works so much differently in you and I. I don't particularly have pain anymore (Valcyte took care of that), so LDN has no effect on pain for me. My doctor gives it to me for it's antimicroglial activity -- to deal with neurological inflammation, if I understand correctly. Rather than making my cognitive function worse (as it does for you), LDN improves my cognitive function. That's probably the biggest effect of that med for me.

Sublingual? Not on your life! This stuff has to get past my taste buds as fast as possible. Most people don't have as strong a taste response to LDN as I do. I'm told it's due to the fact that different people are more or less sensitive to different tastes. Some have a strong negative reaction to sour, others like sour. Some of us can eat (and like!) extremely hot food, while others are in physical pain with relatively mild foods. I'm told it's a genetic thing.

The glass of water thing did not work for us. When we had to do liquid because we were working up to dose, we had to have a large glass of strong juice on hand to gulp immediately after the LDN. Even so, we were hopping around the kitchen going, "Ew, ew, ew, EW!" for five or ten minutes afterwards. Genetics, ain't it grand?

 

[Who Me?]

It's interesting that LDN works so much differently in you and I. I don't particularly have pain anymore (Valcyte took care of that), so LDN has no effect on pain for me. My doctor gives it to me for it's antimicroglial activity -- to deal with neurological inflammation, if I understand correctly. Rather than making my cognitive function worse (as it does for you), LDN improves my cognitive function. That's probably the biggest effect of that med for me.

Sublingual? Not on your life! This stuff has to get past my taste buds as fast as possible. Most people don't have as strong a taste response to LDN as I do. I'm told it's due to the fact that different people are more or less sensitive to different tastes. Some have a strong negative reaction to sour, others like sour. Some of us can eat (and like!) extremely hot food, while others are in physical pain with relatively mild foods. I'm told it's a genetic thing.

The glass of water thing did not work for us. When we had to do liquid because we were working up to dose, we had to have a large glass of strong juice on hand to gulp immediately after the LDN. Even so, we were hopping around the kitchen going, "Ew, ew, ew, EW!" for five or ten minutes afterwards. Genetics, ain't it grand?

The problem I'm having is each day is different. Everything is basically the same but there is no consistency in the benefit. I took it at 5:15 this morning which is usually my good time not so good. Although I usually do have pain later in the day (why I asked about dosing twice a day). I had a run of 4 good days and then overdid it and got PEM but even that wasn't bad.

The fact that it helped my pain is a surprise. I had no idea and I don't think my doc did. When it works, wow, it's like I'm almost normal. I to have one bad day out of 4 is ok, but when you get a taste of what it's like to feel good? Sux not too. And I know now it's inflammation so WTF?

The sublingual question was in general because @Paw asked me. He likes nasty tasting things. Go figure.

 

[Hezza]

Dr Maria Vera of INIM worked me up slowly to taking 4mgs twice daily- first thing when I wake & last thing before bed- that's a total of 8mgs a day. Been on that dose for over 6 mos. Biggest improvement is in pain. Some days when the clouds roll in & I get that deep wretched pain in my hips, legs, feet, I'm reminded that I used to have that EVERY day. Unfortunately I'm still unrefreshed in sleep, very weak in muscles & low in amount of energy. But the kind of unrelenting pain that makes death seem welcome has for the most part departed. And there you have it- an ME/CFS doc prescribing more than 4.5mg.

 

[loki]

i too did LDN with great results. and it proves the theory of a hypersensitive immunity. that is, because LDN inhibits TLR4 receptors which are responsible for activating the innate immune system consisting of microglia and leads to a way better CNS function. It dramatically downregulates proinflammatory cytokines . I was tied to the bed for a year after IFN treatment and when I got the LDN i waked up every day at 7AM to get my drops. After that i felt pretty baked ((-)-LDN blocks opiate receptors which can cause dysphoria, (+)-LDN blocks TLR4) but some hours later i felt better and i realized how the drug affected my immune system. It's so important to start with a low dose because the immune system is of course very complex and needs time to adapt. I got pretty ill for about a week which I interpreted as the adaption sequence. When i got better, i felt how i could walk for hours, read books without losing my mind, talk to people that are healthy... but then i had to go on opiates again and had to quit LDN. i was sad.

The solution to this (and to remove all side effects from the drug) would be the dextro isomer dextronaltrexone. It would make day time dosing possible (even multiple doses), coadministration of opiates and it would remove most of the side effects. The side effects mainly arise from the opiate receptor inhibiting attributes of levonaltrexone.
Since the Revia (naltrexone) is a mixture of all 16 configurations (because of 4 stereocenters in naltrexone) you'll need a gaschromatograph mass spectrometre for the enantiopruity. that's a very expensive technique. I asked an american company that supplies chemicals for trials for some dextronaltrexone (since it's uncontrolled) but they refused to ship. I don't own a GCMS and don't have bathtubes full of money for a lab that would make enantiomere selection possible... nor do i have the knowledge to do such an operation. anyone has clues?

 

[Who Me?]

@Hezza I find that every day is different for me. I had 4 great days then back to not much. I was taking about 5 a.m. but I am not going to wake myself up because I need to sleep.

My NP said 3.5 max but when I went to 2 mgs I had lots of problems so I'm keeping it low.

On my good days I had a significant relief in my pain.

Good luck

 

[loki]

i don't know why big pharma isn't more curious about dextronaltrexone. it's one of the most effective immunemodulating drugs we know. without the serious side effects of Prednisone. Can it get any better? They're such capitalistic f**kwits, just because Naltrexone is so damn old and the patent ran out, they don't do any trials for new indications because they foresee the price of bread for any new naltrexone containing drug...
WELL, CYCLOPHOSPHAMIDE ALSO ISN'T BAD


WAIT

 

[loki]

what i add, i understand that it's helping but what i clearly do not understand is why they do not improve this drug by selcting just the dextronaltrexone and sell it seperately...

dextronaltrexone:
TLR4 inhibition, downregulates cytokines.
levonaltrexone:
opiate receptor inhibition, responsible for most of the sides.

 

[Mark R.]

Hey, I noticed a couple mentions on the sublingual low dose naltrexone and the terrible taste... A buddy of mine has been suffering from Fibromyalgia for a few years now and he uses low dose naltrexone transdermal (cream) He gets it from a compounding pharmacy called CareFirst Specialty Pharmacy https://www.cfspharmacy.pharmacy where they make it for him. Not sure if that helps, good luck!

 

[Steve]

Anyone still on ldn and here? I failed ldn at 2.5 five years ago, horrendous skull pain, so gave up. Getting desperate so five years later, took out old 1.5 mg capsules from frig and started ULDN trial at 1 microgram, now up to 5.6 micrograms per dose from ldn titrated so that is .0056 mg (ml) three times daily with tramadol and tylenol. It seems to work best with dose 1 at 4 AM but this med is very hard to dose and I don’t know whether dosage and/or times are optimal. I still have dreadful back and leg, foot, shin pain of various types at various times, causing me to wonder if this is actually helping at all. I do take it sublingual in empty stomach, found also necessary for (miniscule) help from tramadol. Anyone still using ldn at any dose with suggestions please post.

 

[Hezza]

now up to 5.6 micrograms per dose from ldn titrated so that is .0056 mg (ml) three times daily with tramadol and tylenol.

Hi, just curious, I was told to get off of tramadol before starting LDN bc it’s an opioid & they would cancel each other out, is that incorrect?

 

[Steve]

Hi, just curious, I was told to get off of tramadol before starting LDN bc it’s an opioid & they would cancel each other out, is that incorrect?

Not true, tramadol works on endocannabinoid system but is not considered an opiate. I’ve taken them together for months but dosing still tough, I get a few hours of diminished pain.