Low dose Naltrexone

[leaves]

I am on it now for 3 weeks or so. Cant say I feel better. Some headaches in the afternoon. Maybe I need less sleep? Probably to early for effects? When did other people have effects?

 

[Diva55]

That's a difficult question as some feel changes almost straight away and others may take months and still some get no benefits at all. As we're all different it's very individual.

Again there are the dosing challenges - some jump in at the maximum dose of 4.5mg and some like me had to back down to start at 0.01ml.

Sorry this is not helpful as there is no straight answer. Read back through some of the pages on this thread where people have reported their effects.

I've crawled up to 1.1ml after a month (still not on the recommened minimum dose of 1.5ml) but I've had stomach cramping as a side effect so have had to slowly get my stomach used to it.

For a while I felt like I could fall asleep faster (it usually takes me hours) sometimes within an hour. This is good but doesn't happen every night.

My appetite reduced to almost zero due to my stomach issues and as a result have lost weight but obviously not a good way to lose weight!

What dose are you taking?

Good luck & keep us up to date.

Best wishes
Diva

I pick up my LDN today and I'm so excited.Doc Klimas said it was ok to add it with the Imunovir.
Can anyone tell me when they felt a change on the LDN.

 

[dancer]

Alice, I've been using it for several months, and in that time I've moved from a general approximation of 20 per cent function to often 30 per cent function. Far from "well" - but a move in the right direction. I tried working up to the full 4.5 mg dose, but had more tummy issues, generalized pain, etc. I've been staying at 2.25 mg now, and it seems to be the right amount for me. I'm getting more restorative sleep, and having less overall pain.

The one thing I haven't noticed improvement in yet is the brain fog. My loss of cognition has been the most distressing part of this for me. I struggle to read and write.

 

[oerganix]

I pick up my LDN today and I'm so excited.Doc Klimas said it was ok to add it with the Imunovir.
Can anyone tell me when they felt a change on the LDN.

I felt more cheerful and less foggy the very next morning after I started it.

I also immediately had better sleep and started remembering some dreams, which I hadn't done in decades. I now sleep more and better than I have in years, with the feeling of actually being sleepy and tired instead of burnt out exhausted and still agitated. Brain fog was immediately better, fingers more nimble while typing, better coordinated, stumbling less, walking more and farther, no more setting things down in space instead of on the counter or desk.

I continue to have all those improvements, plus incrementally better energy and stress/overstimulation tolerance. My startle response is better and I can better tolerate noise and commotion.

My partner tells me I am much easier to live with. And my libido and sexual response are much, much stonger. (Might be part of why my partner thinks I'm getting better, eh?)

The down side: I had stomachaches at first, but those have gone away. I've learned to eat some yogurt right after taking the LDN, and that drinking beer after taking the LDN gives me a stomachache, but rum and wine do not. I can drink beer in the afternoon, but I'm losing my taste for it, so rarely do.

I started getting headaches only the left side, new for me, and occasionally a migraine-like visual disturbance, on the left all but once, with only a slight headache. Those have gone away, too.

For a couple of weeks I was dizzier than I've ever been before, feeling like I was on a rocking boat deck. That's gone now. Seems like something in my head and eyes has been fixed.

Restless legs movement almost entirely gone, happens only occasionally and not for long, as I fall asleep much more quickly and usually stay asleep all night, if I don't have to get up to go to the bathroom. No more waking up and not being able to go back to sleep and feeling angry about it. Feeling a lot less angry about just about everything, in fact.

PEM seems to be somewhat better. Hard to tell as I've been watching myself, trying not to overdo. But I have done more than I should at times and haven't suffered the crash I feared. Taxi drivers are on strike here, my main method of transport, so I've had to walk more than I would like, but, so far, I've been able to handle it. There have been times that I didn't start home soon enough and so, by the time I got home, I was weepy and feeling so bad I just had to go to bed and cry a little. Hasn't happened since I started LDN.

Of course, your mileage may vary. Hoping for the best for you!

 

[alice1]

Thanks so much...we do vary a lot it's amazing.It seems that those headaches paid off.
I hope you all improve and I'll keep you posted on what it does or doesn't do for me.I'm doing well on the Imunovir,no side effects and my energy has increased. This is just month 1,can't wait for month 4.
Al.

 

[Cloud]

Tried LDN last night for the first time in 10 years. Today I feel as though I am relapsing. I am much more ill than any of my fluctuations over the last year, and it could only be due to the LDN. I only took 1.5mg last night...woke up this morning feeling a good, but about an hour into being up and moving around (way within my current energy envelope capacity), I got sick in a way that I could easily see was something new and could only be the LDN. This afternoon I slept for 2 hours (I never do that), and am now feeling a bit better, but still like I weigh 1000 lbs. I just don't see how this could be a "sensitivity" issue...in other words taking an even smaller dose may help. It feels more like something I should never take again at any dose. I know that people talk a lot about getting through the initial sensitivities.....but this feels harsher than that.....Any advice?

 

[Sushi]

Can anyone tell me when they felt a change on the LDN.

Hi Everyone,

I've been "missing" for a while--not sick but busy--and LDN is one of the reasons I can manage to be "busy."

As to how soon the effects are felt, for me it was immediate--the next day. But it took several months of slowly increasing the dose to notice the "wow, I am different" effects. I have been on it now for 7 months and feel like I am still improving. I recently actually conquered a sinus infection--a problem that has been chronic for me for decades. Before my immune system would launch a brief attack and suppress the infection without clearing it. Now it seems to have actually cleared it.

It is great to hear the good stories on this forum and I wish we had wise advice for those who do not respond well. I just send my good wishes.

Sushi

 

[jono_aus]

Except that I live in Nicaragua and shipping here was quoted to me by Skips to be between $50-100...monthly....yikes! So I bought a year's supply from India for $133, shipping included.

Oerganix, I'd be grateful if you could share what Indian pharmacy you bought it from (I assume it was online?). That sounds like a cheap and easy way of getting it.

Thank you.

 

[alice1]

It took some doing to find a pharm that had low dose, didn't occur to use a compounding pharm...oy.
so tonight will be my frist night.I'm sorry that it hasn't worked for some of you and thrilled about what it's done for others..
We'll see,and again thankyou for the replies.
Best
A

 

[Diva55]

Hi Cloud
I'm so sorry to hear about your reactions.
As you know I found 1.5mg far too much for me but the reaction I had was awful stomach cramping & pains, not the things you felt.

The only thing I would suggest is going down to 0.1mg & only raising it by a tiny bit every week. I know you don't want to hear that but that's all I can offer.

It took me about 3 weeks to go up to 1.0mg (ml). I tried to jump up to 1.5mg the other night and my stomach cramping was there again so I'm going to creep up slowly.

As for the afternoon nap - LDN does make you crave rest. I read somewhere that's quite common and to go with the flow as your system is asking for the time to repair you.

Oh had another thought - could it be the fillers that we discussed? I'll try & find the discussion on another board about fillers.

I hope others can chip in with advice for you.

Best wishes
Diva

Found a snippet on another board about fillers:

LDN should not be compounded with the filler calcium carbonate, as it tends to cake and prevent rapid release

Stay clear of Calcium Carbonate as your capsule filler. Be firm in this with your pharmacist and tell him/her why you fear CC. I'm not the only person this has happened to. Fast release fillers that are good are Lactose, Acidophilus(non-dairy/Non-refrigerate), Gelatin, Avicel-a.k.a. Cellulose(if allergic can cause headache, nausea, vomiting). Dr. Bihari preferred Lactose filler over all fillers but if you're allergic request acidophilus or gelatin.

Cornstarch has been used but many get sick to their stomachs on cornstarch filler.

Tried LDN last night for the first time in 10 years. Today I feel as though I am relapsing. I am much more ill than any of my fluctuations over the last year, and it could only be due to the LDN. I only took 1.5mg last night...woke up this morning feeling a good, but about an hour into being up and moving around (way within my current energy envelope capacity), I got sick in a way that I could easily see was something new and could only be the LDN. This afternoon I slept for 2 hours (I never do that), and am now feeling a bit better, but still like I weigh 1000 lbs. I just don't see how this could be a "sensitivity" issue...in other words taking an even smaller dose may help. It feels more like something I should never take again at any dose. I know that people talk a lot about getting through the initial sensitivities.....but this feels harsher than that.....Any advice?

 

[Cloud]

Lol, yea Diva I did kind of indicate not wanting to hear about lowering the dose didn't I. But actually, what other advice could there possibly be? Either I stop the LDN and shut my mouth, or I try an even lower dose. So, thanks for responding in spite of me, lol.
Late last night and today after the bad effects have passed, I feel in some ways better than before taking the LDN......so I've been considering giving a lower dose a try anyhow. It's not going to be easy to do since the powder from that 3.5 mg capsule is such a tiny amount; Splitting it into 1/8th's will be even harder to do. The first dose would be easy enough, but how would I save the rest of it in a way that would keep it fresh? Maybe I have to just take 1 dose and discard the rest from each capsule.
On the filler issue....I'm not sure what the filler is....I could call the pharmacy and ask.

Thanks Diva

 

[Diva55]

Yes you did indicate not wanting to hear about lowering the dose - but I blindly ignored that for your own good, ha, ha!

A positive if you felt in someways better. Might be worth pushing on for a little while but go carefully & slowly - no need to say that as I'm sure you will!

With the powder in the capsules I suppose you could do what others do with making your own solution. I know Oerganix does that with the 50mg pills.

Here's something I found on making your own solution:

How to mix in liquid form
Acquire some ml measuring equipment from the baby section of a Drug Store and a small bottle with a screw-on cap. Put 50ml of water (distilled is best) and one 50mg "ReVia" Naltrexone tablet in the small bottle and let it dissolve with a little time and shaking. Now each ml of water in that small bottle contains 1 mg of Naltrexone. At bedtime shake the bottle, take a desired dose (no more than 4.5ml), chase it down with some water and store the small bottle in the refrigerator. Some people have reported splitting the tablet in half and dissolving it in 25ml of water to assure freshness every week. You might add some stevia sweetener as naltrexone is quite bitter.

Good luck to you & hope you find the balance that works for you.
Best wishes
Diva

Lol, yea Diva I did kind of indicate not wanting to hear about lowering the dose didn't I. But actually, what other advice could there possibly be? Either I stop the LDN and shut my mouth, or I try an even lower dose. So, thanks for responding in spite of me, lol.
Late last night and today after the bad effects have passed, I feel in some ways better than before taking the LDN......so I've been considering giving a lower dose a try anyhow. It's not going to be easy to do since the powder from that 3.5 mg capsule is such a tiny amount; Splitting it into 1/8th's will be even harder to do. The first dose would be easy enough, but how would I save the rest of it in a way that would keep it fresh? Maybe I have to just take 1 dose and discard the rest from each capsule.
On the filler issue....I'm not sure what the filler is....I could call the pharmacy and ask.

Thanks Diva

 

[oerganix]

Oerganix, I'd be grateful if you could share what Indian pharmacy you bought it from (I assume it was online?). That sounds like a cheap and easy way of getting it.

Thank you.

I get it from internationaldrugmart. Just add the www and the .com, and you've got it. They required a prescription, which I scanned and emailed. Don't think they really care all that much, though, hint, hint. They have a toll free number. The product is called Revia when you search the site. Or NoDict, the generic name in India. It took about 10 days to get to New Jersey, a friend's address, since I don't trust the postal system here. Friend delivered it to me later, which is why it took me so long to get started.

 

[oerganix]

Lol, yea Diva I did kind of indicate not wanting to hear about lowering the dose didn't I. But actually, what other advice could there possibly be? Either I stop the LDN and shut my mouth, or I try an even lower dose. So, thanks for responding in spite of me, lol.
Late last night and today after the bad effects have passed, I feel in some ways better than before taking the LDN......so I've been considering giving a lower dose a try anyhow. It's not going to be easy to do since the powder from that 3.5 mg capsule is such a tiny amount; Splitting it into 1/8th's will be even harder to do. The first dose would be easy enough, but how would I save the rest of it in a way that would keep it fresh? Maybe I have to just take 1 dose and discard the rest from each capsule.
On the filler issue....I'm not sure what the filler is....I could call the pharmacy and ask.

Thanks Diva

Cloud, I hope you are feeling better. I second what Diva said, that you can go even lower. I have, on occasion, just skipped a dose, too, when I didn't want to experience any downside. I had stomachache at the beginning. Sushi had to go low and slow, but she made it through. Of course, only you can decide if the suffering now is worth the unknown benefit that may or may not come.

Seems like "low and slow" is the mantra for LDN, for many.

Re the 3.5mg capsule. You could add the whole thing to 3.5mg of distilled water and then use an eye dropper to measure a dose as small as you want to try. If you took 0.5mg, the solution would last you for a week, in the refrigerator. I keep mine for about 10 days, since I'm using the 50mg tab in water, and doing a dose of 4.5mg, more or less, which works out to about a teaspoon of solution per dose.

If you don't have an eyedropper, I calculate that 0.5mg works out to a little less than 1/8 tsp of the solution. (1/9th, to be exact).

If you want to try less than that, you could suck up 1/8th tsp in the eyedropper, then drop it, drop by drop, back in the bottle, counting how many drops make 1/8th tsp, and then dividing that number by 5, to get the number of drops to make up 0.1mg. (If your eyedropper isn't already marked for ml)

The taste is bitter, but I've tasted worse. I just "chase" it with some yogurt and then some club soda. Both seem to counter the stomach irritation. Tums, or any antacid, seemed to help me, too.

I read elsewhere of people putting the LDN in an herbal tea, with honey or stevia, right before going to bed, and of adding LDN to some kind of good tasting paste for children, so it seems not to matter too much how it is delivered.

Good luck to all. Let us know how it goes.

Oh, yeah. The sleeping more. I'm having that, too. Seems almost like my body is asking for some down time just to repair. It's a good kind of sleeping that I'm doing though, and when I don't do it, I haven't been "punished", so far.

 

[Cloud]

Oerganix and Diva....Thanks for the advice on diluting down the LDN. No shortage of materials to do that with here at my place; I have all kinds of measuring spoons and syringes and should be able to pull that off fairly accurately. If I make a week supply with each capsule, that would be a tad more than 0.5mg per dose. I also like the idea of QOD (every other day)....I may try that as well. Great ideas....much appreciated

 

[alice1]

hope you feel better cloud.
i started my ldn last night and woke up every hour..i started at 2mg but tonight i'll try 1mg..i had a lot of dreams but they were great.
umm sexy.hope that continues.

 

[herbqueen]

Cloud-I as on LDN for 1 year- I thought it wasn't doing anything-but in hindsight wish I'd stay'd on it throught 2009 since I was stable in 2008. I started LDN in the middle of my first neurolgoical flare from taking herbs -so was sick t begin with but LDN gave me flu like symptoms in addition for the first several weeks (dizzy, sick feeling, and shakier)- I know it can hit those with CFS hard. go low and slow.

Many to report a herx effect when starting LDN-I would kill to be able sleep right now - look as sleep as a repair and rest!

 

[alice1]

oerganix i believe it was you that mentioned some people find that taking ldn in the day worked better for them regarding energy.that wouldn't contribute to the early hours of the endorphin uptake though.
i think i'm just speaking out loud because of the energy it gave me during the night which i'd love for day.
trial and error i suppose on the night dosage.

 

[*GG*]

I started LDN in the middle of my first neurolgoical flare from taking herbs -so was sick t begin with but LDN gave me flu like symptoms in addition for the first several weeks (dizzy, sick feeling, and shakier)- I know it can hit those with CFS hard. go low and slow.

Many to report a herx effect when starting LDN-I would kill to be able sleep right now - look as sleep as a repair and rest!

This sounds very much like my condition when I started LDN, except that I just do typical supplements. I had insomnia also and the pain was nothing I had experienced before. Still have the burning sensation in my back on a daily basis. I am now on 4.5mg for about a month now?! Had a mouth sore for a week and that went away!

 

[*GG*]

oerganix i believe it was you that mentioned some people find that taking ldn in the day worked better for them regarding energy.
that wouldn't contribute to the early hours of the endorphin uptake though.
i think i'm just speaking out loud because of the energy it gave me during the night which i'd love for day.
trial and error i suppose on the night dosage.

I spoke to my Dr about taking during the day, after the fact, and he said it was of no value to take it during the day! FYI

I take Mitrazapine at night and that really seems to work well for my sleep! Tried Trazadone, worked for a while, and Doxepin did not work at all! I also use a VPAP now after my bought with insomnia this past fall, 2 sleep studies and it was deteremined that I have obstructive sleep apnea and the Dr said it was probably from all the years of muscle relaxers!! I forgot my sleep meds the other night, but thought I had taken them, and wondered why I could not fall asleep and had to take sleeping medicine.