Low dose Naltrexone

[Marlène]

Hello Henk

Excellent advice from Sushi. No need to push healing. Think of your healing like having a baby. It takes 9 months and you can't rush nature. Your body needs time to. Only raise the dose when the symptoms are gone. Then your brain is ready for the next step.
For years I couldn't read anymore or listen to music (or noise) but after the "electrical zapping" that lasted several months, I was finally able to read again and I could listen to music. It changed my life completely. No more need to live in isolation and discovering the radio again.

 

[Henk]

Thanks Sushi and Marlene,

I started at a dose of 1.5 mg. But like my LDN comes in pills of 1.5 mg it is hard to increase slowly. I cut the pills in half but that of course is not very accurate. But I will take it slowly. It is good to hear that you can do all these things again Marlene. Sounds like you have some sort of Life again. Great.
You have giving me hope that those "zaps" are signs of healing and once I'm trough I will be clearer in my head. That would be amazing.
By the way Sushi we have met at the Eurovolley in april last year. Maybe you remember. Hope you are doing good.

The Best to you
Henk

 

[Sushi]

By the way Sushi we have met at the Eurovolley in april last year. Maybe you remember. Hope you are doing good.

The Best to you
Henk

Hi Henk!

Yes, I remember meeting you but didn't recognize the name. Best wishes! The Eurovolley has been the scene for a lot of us to meet.

Here is an interesting article about LDN and how it actually works--apparently new research and encouraging:

http://chronicfatigue.about.com/b/2...a-immune-pathways-naltrexone-fibromyalgia.htm


"...scientists say, it appears to be working through the brain's own immune system instead of pain or painkilling pathways....the brain needs to take care of its own immunity. The job falls to specialized cells called glia. Glial cells are the white matter of the brain and are fundamentally different from gray-matter neurons....The Stanford researchers believe that drugs such as naltrexone relieve fibromyalgia pain by changing the way microglia behave."

Sushi

 

[JAH]

I was on LDN for only 4-5 days and went off because I had a lot of lymph pain. Also more "virusy" feeling, fatigue bad. I was taking 2.5mgs, and will try again at a lower dose. Has anyone had a similar flare -up?

Interesting quote about ldn working in the brain. I don't have a lot of fibro or pain, but did when I started ldn! I have a lot of infections, so if ldn is an immune suppressor, maybe not for me. (unfortunately)

JAH

 

[Sushi]

I was on LDN for only 4-5 days and went off because I had a lot of lymph pain. Also more "virusy" feeling, fatigue bad. I was taking 2.5mgs, and will try again at a lower dose. Has anyone had a similar flare -up?

Interesting quote about ldn working in the brain. I don't have a lot of fibro or pain, but did when I started ldn! I have a lot of infections, so if ldn is an immune suppressor, maybe not for me. (unfortunately)

JAH

Yes, 2.5 mgs is quite a high dose to start on and it follows that you could have a "virusy" feeling etc.

One person ended up in the hospital with a temperature of 104F just by upping the dose from 1.5 to 3 mg. LDN isn't an immune suppressor--more like a modulator and should help fight infections. That is what happened to the person who ended up in the hospital--exposed to the flu and the immune system suddenly "recognized" the invader and set up an attack--temperature being part of the attack. Feeling lousy when starting with too high a dose of LDN can mean that your immune system is mounting an attack. That is why we feel so awful with colds. Of course, it could also mean that LDN isn't for you?

Best,
Sushi

 

[JAH]

LDN isn't an immune suppressor--more like a modulator and should help fight infections.
Best,
Sushi

Thank you- that would explain the lymph pain, and fatigue, since they are by products of an active immune system.

2.5 mg was actually half of what my dr. prescribed - will take a while to get up to 5 mg.

JAH

 

[*GG*]

Thanks Sushi and Marlene,

I started at a dose of 1.5 mg. But like my LDN comes in pills of 1.5 mg it is hard to increase slowly. I cut the pills in half but that of course is not very accurate. But I will take it slowly. It is good to hear that you can do all these things again Marlene. Sounds like you have some sort of Life again. Great.
You have giving me hope that those "zaps" are signs of healing and once I'm trough I will be clearer in my head. That would be amazing.
By the way Sushi we have met at the Eurovolley in april last year. Maybe you remember. Hope you are doing good.

The Best to you
Henk

A lot of people make their own LDN, because they cannot get their Drs to prescribe and possibly because it is cheaper than a prescription. They buy it in a 50mg pill and add it to 50 mls of water, therefore 1ml=1mg, so you can manipulate your dosage very easily this way. I can give you instructions on how to do this if you like, PM if I do not respond to this thread.

GG

 

[*GG*]

I believe Tramadol is one of the few/only opiate a person can take with LDN, confirm with a pharmacists!

GG

 

[TraderTif]

A lot of people make their own LDN, because they cannot get their Drs to prescribe and possibly because it is cheaper than a prescription. They buy it in a 50mg pill and add it to 50 mls of water, therefore 1ml=1mg, so you can manipulate your dosage very easily this way. I can give you instructions on how to do this if you like, PM if I do not respond to this thread.

GG

My doctor told me how to start doing that about a year ago - cut the cost of my prescription by 95%!!

 

[moonchild]

i don't think i ever got back to this! (shouldn't really be surprised...my head is like sieve) i came across the thread again while looking for more LDN info and realised i had posted on here months ago when i was first looking into it.

so, an update. i finally started taking the LDN in jan. i began on 0.5mg as i have hashimotos hypothyroidism and wanted to be really careful, especially as i can be incredibly sensitive to random medications. i've slowly increased the dose (changing to every second night to attempt to reduce the side effects i'll go into in a second) and just last night got up to 2.0mg.

it's been a rocky road, to put it mildly. i've had a hell of a time emotionally - with an exhausting anger/rage and also increasingly anxiety and depression. the nausea has been pretty well constant and overwhelming at times plus my appetite has almost disappeared and everything tastes different. central sensitisation is through the roof and i'm finding any sound or movement at all almost intolerable. i've had bowel cramps and other issues when i increase the dose. and the myofascial pain in my face/neck and constant headaches/migraines (which i was really hoping that it would help with) have only worsened...it seems they get worse as the day goes on. also, fatigue is in a totally different league to normal.

i finally got hold of the pharmacy who i bought it from today and the filler they use is avicel, which seems to be a recommended one. i have, however, come across a few references to people having reactions to it.

wondering if any of this sounds familiar to anyone else who has tried LDN? or if anyone has heard of reactions to avicel that sound like what i have been experiencing?

cheers

 

[Sushi]

Moonchild,

The emotional stuff sounds like your opiate receptors are being blocked for too long. That prevents you getting your own endorphins. Maybe you are one of the people who should stay at a really low dose? There is no magic number for the dosing and some take a very low dose every other day with success.

The main reason people take it at night is to sleep through any uncomfortable emotional reactions but it sounds like LDN is staying active in you much longer than usual.

Just my thoughts on it. Not an expert.

Best wishes,
Sushi

 

[moonchild]

hi sushi

thanks very much for the reply. i know you're not an expert (although i've seen a lot of your comments around here and you seem very knowledgeable!) but your thoughts are still very interesting and helpful.

i'm starting to think the same about perhaps needing to try a lower dose again and see if things change...hoping that my doctor will have some insight and advice later in the week. it really did help to change to every second day, which to me indicates that perhaps my body is taking a long time to metabolise it? i'm just wondering now what would block the opiate receptors? i'm sure it's an obvious answer and will occur to me as soon as i get off here, but eludes me right now. one interesting thing to me is that i was on morphine for years in an attempt to help the fibromyalgia pain (all it did was take the edge of it) and the myofascial type pain only began when i had finally completed the morphine withdrawal. may well be coincidence and more to do with being a little upright and changing posture etc but it is something that i do wonder about from time to time.

thanks again for your input.

take care.
kirsten

Moonchild,

The emotional stuff sounds like your opiate receptors are being blocked for too long. That prevents you getting your own endorphins. Maybe you are one of the people who should stay at a really low dose? There is no magic number for the dosing and some take a very low dose every other day with success.

The main reason people take it at night is to sleep through any uncomfortable emotional reactions but it sounds like LDN is staying active in you much longer than usual.

Just my thoughts on it. Not an expert.

Best wishes,
Sushi

 

[Sushi]

i'm just wondering now what would block the opiate receptors? i'm sure it's an obvious answer and will occur to me as soon as i get off here, but eludes me right now.

Naltrexone's mechanism of action is to block the opiate receptors--that is what the drug does. With really low doses though, you are supposed to be only blocking them for a few hours to "trick" the body into making more endorphins (the body "thinking" that it is not making enough.) If your body metabolizes the drug in an unusual way, you could be blocking the opiate receptors more or less continuously and never experiencing your own endorphins. (Sorry, not a very scientific explanation!)

So trying a very low dose,less often might let you know if this is happening.

Best wishes,
Sushi

 

[moonchild]

now i'm wondering why my body would be metabolising it in an unusual way! i've had liver function (which seemed the obvious one to me, especially when i look at my symptom profile) checked in the past and it wasn't really out significantly. going to be interesting to see what my dr has to say about it tomorrow...

thanks again sushi.

Naltrexone's mechanism of action is to block the opiate receptors--that is what the drug does. With really low doses though, you are supposed to be only blocking them for a few hours to "trick" the body into making more endorphins (the body "thinking" that it is not making enough.) If your body metabolizes the drug in an unusual way, you could be blocking the opiate receptors more or less continuously and never experiencing your own endorphins. (Sorry, not a very scientific explanation!)

So trying a very low dose,less often might let you know if this is happening.

Best wishes,
Sushi

 

[moonchild]

interesting little 'wondering'...was just researching a possible drug to try and came across a lot of info on an archived PR thread. in this thread there happened to be a mention of LDN leading to IRIS in some people. so many different theories with this - my head is spinning!

 

[penny]

now i'm wondering why my body would be metabolising it in an unusual way! i've had liver function (which seemed the obvious one to me, especially when i look at my symptom profile) checked in the past and it wasn't really out significantly.

I can't help with the why, but I can tell you that you wouldn't be alone! I can only handle a very low dose - and for what it's worth, my liver function tests have all been fine, and I am not usually sensitive to medications.

I take .5 mg a night, and that helps me. I have tried higher (in the 1.5 range I think) in the past and I was depressed, sleepy, groggy and irritable.

Good luck!
Penny

 

[moonchild]

thanks penny, it always helps to know that you're not alone (even though you wish that no-one else had share the horrible experiences). how long have you taken it for? and how do you find that it helps you?

cheers

I can't help with the why, but I can tell you that you wouldn't be alone! I can only handle a very low dose - and for what it's worth, my liver function tests have all been fine, and I am not usually sensitive to medications.

I take .5 mg a night, and that helps me. I have tried higher (in the 1.5 range I think) in the past and I was depressed, sleepy, groggy and irritable.

Good luck!
Penny

 

[L'engle]

I just took the tiniest amount of a tablet, just some powder on the end of a pin. I can already feel it! I will definitely be careful with this stuff. Anything that instantly feels like a form of relief has some promise to it I think.

 

[Sushi]

I just took the tiniest amount of a tablet, just some powder on the end of a pin. I can already feel it! I will definitely be careful with this stuff. Anything that instantly feels like a form of relief has some promise to it I think.

Glad you felt it. The danger is not realizing how powerful this stuff is for some of us and increasing the dosage to feel even better. I have had to adjust my dosage several times after reaching the target 4.5 mg. I seem to need less now. Maybe because I am, in general, better.

Best,
Sushi

 

[penny]

thanks penny, it always helps to know that you're not alone (even though you wish that no-one else had share the horrible experiences). how long have you taken it for? and how do you find that it helps you?
cheers

Hi Moonchild,
I've been taking LDN for about 9 months. Most of that time I have been taking .5mg per night.

I had an immediate small (but noticeable) improvement in pain levels and OI. For pain, it did not resolve any specific pain (muscle, joint, bone, etc.) but felt like it turned down the volume of my pain by a degree or two. Which makes sense with the idea of increasing endorphin production. I also noticed that within the first month my PEM (PENE) seemed reduced - I didn't crash even when I knew I should have. Though I should say that my energy was not noticeably better. I think that was about it for the first 5 months or so.

In the last 4 months I've had some significant improvement with health overall; pain, energy, functioning. LDN isn't the only thing I take, and I don't think it's the only thing that has helped, but I believe it has been one of the most important pieces of my treatment. It might be the most important thing.

I have wanted many times to increase my dose because I want to get better faster (of course!), but a larger dose just doesn't seem to work for me. Even what seems like a tiny increase (.55mg instead of .5) left me feeling sleepy, grumpy and down the next day. I do think the low and slow method is the way to go, both to avoid side effects and because I think it gives you more time to become familiar with how you're body reacts to it. For me:

• Too much LDN = daytime sleepiness, sad/down for no reason, and difficulty doing anything
• Not enough (this has happened when my LDN gets old and thus less effective) = more pain, volume turned up

It does seem to be continuing to help me, slowly, bit by bit, over time. I've seen a number of people on the LDN yahoo group (most of whom take it for MS) say that it can take months to years to see the full benefit. And I'm thinking that's probably true. Or maybe I'm hoping! I would love to keep seeing more benefits and improvement after time goes on.

I hope this helps!
Penny