Low dose Naltrexone

[Marlène]

Hello everyone

just wanted to encourage everyone to start with LDN

I started 1,5 year ago. It was very difficult for almost 6 months. I started very low 0,2 mg and took me over a year to build up till 3,5 mg.

It was very difficult because I had all "side-effects" you can imagine. In fact these are not side-effects, your body is repairing itself. I was sick, in pain, my belly and head ached terribly, lost my balance, couldn't sleep without medication, was a wreck, was often unable to leave my bed for days.
So don't be discouraged after a few days or weeks.

Because if you would see me now, I'm still bedbound 50% of the day but I'm no longer in a wheelchair, I can drive a car, clean my house once in while or work in the garden for an hour, read a book, listen to music, understand people, recover more quickly after an effort, ...
It is only after a year and half that LDN is not disturbing my sleep anymore as much. I wake up at 4am and try to rest till the morning comes.

If you suffer adrenal fatigue, you might consider hydrocortisone (5-30mg) after a few months of LDN.

You can find more info at my blog http://opstaanmetmecvs.blogspot.com

All the best!

 

[anniekim]

Hi Marlene

Thank you for sharing your positive experience of LDN. I always find it helpful to hear about people's experiences of different treatments, the highs and lows. I'm so glad overall it has helped you.

When you wrote you had quite severe side effects, were they as bad as you describe continuously or would they ease a bit at a certain dose and then increase again as you raised the dose further? Also have you had these side effects the whole 18 months off an on or was it just the first few months? 18 months of continuous very bad side effects sounds hard. Ah reading through your post again, I see it was the first six months that were very hard.

I've just started LDN and it's hard to know what are temporary side effects and what might not be

Many thanks for your time and help

One more question if that's ok. Considering you had such extreme side effects, may I ask what made you persevere? I think I would get worried I was doing damage and give up, rightly or wrongly.

 

[Marlène]

hello anniekim

When you wrote you had quite severe side effects, were they as bad as you describe continuously or would they ease a bit at a certain dose and then increase again as you raised the dose further?
They were bad the first 6 months almost all the time but especially when I raised the dose indeed.
So I raised the dose on Monday, could stay sick in bed till Friday and be a little bit better in the weekend after a while for the children.

Also have you had these side effects the whole 18 months off an on or was it just the first few months? It was the first 6 months that were very hard. after that I was difficult for about a week when I raised the dose.

Considering you had such extreme side effects, may I ask what made you persevere? I think I would get worried I was doing damage and give up, rightly or wrongly.
I had a lot of confidence in the person who prescribed me the LDN. I had been so sick before LDN that I even asked for euthanasia a year before. All these side effects were beareable compared to the suffering I had been through already. There was no way I ever wanted to suffer like that again so I would try anything to become better. Last but not least, there were little moments of energy that popped up, they lasted a few minutes but it was enough to keep me going and persevering.

 

[anniekim]

Thanks Marlene for your reply, much appreciated

Just one question. When you said you were so sick before trying the LDn, do you mean you felt even more sick than the side effects? Or for the first six months were you feeling your baseline very sick and then the side effects over and above that? Many thanks

 

[Marlène]

Thanks Marlene for your reply, much appreciated

Just one question. When you said you were so sick before trying the LDn, do you mean you felt even more sick than the side effects? Or for the first six months were you feeling your baseline very sick and then the side effects over and above that? Many thanks

Yes I was extremely ill between Oct 2008 - Jan 2010. I was completely bedridden and unable to feed myself, go to the bathroom, my kids were allowed 5 minutes in my bedroom a day, my brain felt like "melting wires", things like that. I don't mention the pain. That's when I asked euthanasia. Things changed very slowly one day, I was able to be transported and I started neural therapy, vit B12 and Q10.

I started LDN in August 2010.

The side effects (which I consider healing effects) were bad but couldn't be worse that the nightmare I had already been through It is like the flu. You feel bad but your body is fighting the enemy. That's what happens with LDN, your body finally gets the arms to fight the enemy.

 

[anniekim]

Hi Marlene, thanks for explaining. I so pleased you have improved so much. I was as bad as you describe for 16 months five years ago and it was a living hell. I so feel for those who remain in that state for years.

Thank you for sharing that LDn can have bad side effects in the first few months. It's good to know this so as to persevere

May you continue to make further improvements

 

[Frankie Dene]

I have been on LDN now for 12 weeks. I had problems at the start with sleep so cut the dose down to .5 taken in the morning and very slowly increased to 4.5 and then moved it up until now I'm taking it at night(now for a week) and am sleeping really well. So it is important not to give up due to sleep problems but take it very slowly. I am feeling stronger - but who knows if it is the LDN - but I am pretty positive - it feels as if a cloud has lifted. fingers crossed it is the LDN and I will continue to improve - my ME is bad too - on the bed mostly and don't do any housework etc. I am also taking imunovir - another anti viral but have been taking it for years - the change seems to be related to LDN - but as I say, who knows!!

 

[Carola]

Heartfelt thanks to everyone who has posted their experiences on this thread. I got my LDN prescription 3 weeks ago, and thanks to you knew to ask for a liquid formulation so that I could "start low and go slow." I started at 0.3 mg. and have worked my way up to 0.75 mg. Again thanks to you, I knew to expect a few nights of disrupted sleep (and I had them) but to stay the course.

I'm very encouraged by my response so far. I'm definitely sleeping better and I no longer wake up feeling the dread of having to face another day. Overall my mood is brighter. That feels good!

I'm not sure if I need to go to a higher dose. If anyone has stopped at 1.0 mg or less, I'd be interested to hear.

 

[penny]

Yay! It's always so good to hear when people have some improvement!

Carola - I have been at .5mg for about 5 months with good progress. I had tried an increased dose but had problems clearing it and had excessive day time sleepiness (as opposed to normal tired/wired), increased mental fuzziness and started feeling depressed. There may have been some other weird side effects I'm not remembering now.

It's interesting that you mentioned (on the other thread) that you were prescribed LDN to help increase slow wave sleep. I've had the feeling that increasing SWS is one of the things that has helped me, though I didn't realize that LDN had this effect (I thought it was the baclofen and ambien I take at night).

Frankie Dene - I hope you are continuing to improve!

 

[Carola]

Yay! It's always so good to hear when people have some improvement!

Carola - I have been at .5mg for about 5 months with good progress. I had tried an increased dose but had problems clearing it and had excessive day time sleepiness (as opposed to normal tired/wired), increased mental fuzziness and started feeling depressed. There may have been some other weird side effects I'm not remembering now.

It's interesting that you mentioned (on the other thread) that you were prescribed LDN to help increase slow wave sleep. I've had the feeling that increasing SWS is one of the things that has helped me, though I didn't realize that LDN had this effect (I thought it was the baclofen and ambien I take at night).

Thanks, Penny. It's very good to hear that the "low-low" dose is helping you. And I appreciate the reinforcement of my sense that there's no good reason to push toward a higher dose at this point.

 

[Frankie Dene]

I have been on it for 4 months and am definitely stronger and better. Who knows if it is the cause but I'm feeling good, no relapses, but still taking it slowly after being bed and house bound after other improvements, leading to over doing it and relapsing badly - for years -I'm learning from the past and slowly does it but I feel great. I am also on imunovir -for years - I think it gave me 5 years of normality until I overdid it and relapsed 3 years ago. I am having deep sleeps, slow to wake up, feel groggy at waking up. Started with sleep problems with LDN so took it .5 in mornig and over 6 weeks increased by .5mg to now at 4.5mg at night. I feel it is worth trying to increase in very small doses over a long period to get to the night at 4.5mg. Good luck - people say they can see the difference in my face.

 

[Sushi]

I have been on it for 4 months and am definitely stronger and better. I am having deep sleeps, slow to wake up, feel groggy at waking up. Started with sleep problems with LDN so took it .5 in mornig and over 6 weeks increased by .5mg to now at 4.5mg at night. I feel it is worth trying to increase in very small doses over a long period to get to the night at 4.5mg. Good luck - people say they can see the difference in my face.

I've been taking LDN for a couple of years and took 4 months to get up to the 4.5 mg dosage. After a year or so I also started feeling groggy in the morning. I lowered the dose just a bit and now do not have the grogginess.

Best,
Sushi

 

[Henk]

Hi everyone,

I'm trying to figure out a new symptom. I have CFS/ME and am taking LDN. On 2.25 mg so far. Now this symptom is best described as Brain zaps. Sometimes it feels like electricity is shooting from my ear to my Brain leaving me very irritated. Afterwards I#m very sensitive to sound, light and movement. For me, these "zaps" are a mixture of the feeling you get when someone startles you and a sensation of falling. It sort of feels like electricity running through my head and down my spine. Also, I don't know if the adrenaline rush is part of what's going on or a result of it, but when I have a big zap I usually get a big surge of it.
Does anyone know this? Could it be from LDN? The only thing I found on the net were Brain zaps from Anti Depressant withdrawl. But I don't take that. Only LDN.
It's driving me crazy not knowing whats going on. I'm so afraid of a stroke.

 

[Charles555nc]

I had rage alot with Ldn even at .5mg dose and I developed Rosacea also. But I think it made me feel stronger in general. I will try it agian when i have the Rosacea under control.

Edit: boron and benedryl really helped my Rosacea

 

[JAH]

Now this symptom is best described as Brain zaps. Sometimes it feels like electricity is shooting from my ear to my Brain leaving me very irritated. Afterwards I#m very sensitive to sound, light and movement. For me, these "zaps" are a mixture of the feeling you get when someone startles you and a sensation of falling. It sort of feels like electricity running through my head and down my spine. .

I have "brain zaps" , usually when I am falling asleep or waking up. I hate it - like electricity shooting through your head. I am not on LDN, but am planning to start soon.

JAH

 

[Patrick*]

Hi All,

My doctor prescribed LDN yesterday. I'd never heard of it until then, but based on this thread I think I'll give it a try.

My NKC activity level recently tested 8 out of a range of 8-170, so I hope to raise that number with LDN. Has anyone seen a measurable increase in NKC activity while taking LDN?

PWCalvin

 

[Sushi]

Hi All,

My doctor prescribed LDN yesterday. I'd never heard of it until then, but based on this thread I think I'll give it a try.

My NKC activity level recently tested 8 out of a range of 8-170, so I hope to raise that number with LDN. Has anyone seen a measurable increase in NKC activity while taking LDN?

PWCalvin

My NK cell number and activity have gone up while I have been on LDN (about 2 years), but I am also taking GcMAF and Nexavir so it is hard to tell what is doing what.

I took the LDN first, though, and it definitely helped with many symptoms. I'd advise starting low. 1.5 mg is the usual starting point but some find they need to start at .5 mg or even lower. You may well get an immune response and/or insomnia at first. The insomnia goes away, though it can recur every time you raise your dose (raising by about .5 mg every couple of weeks, depending on your response, seems to work for many). I didn't get insomnia but rather deeper sleep after I got to about 3.5 mg.

Good luck with it!
Sushi

 

[Marlène]

Hi everyone,

I'm trying to figure out a new symptom. I have CFS/ME and am taking LDN. On 2.25 mg so far. Now this symptom is best described as Brain zaps. Sometimes it feels like electricity is shooting from my ear to my Brain leaving me very irritated. Afterwards I#m very sensitive to sound, light and movement. For me, these "zaps" are a mixture of the feeling you get when someone startles you and a sensation of falling. It sort of feels like electricity running through my head and down my spine. Also, I don't know if the adrenaline rush is part of what's going on or a result of it, but when I have a big zap I usually get a big surge of it.
Does anyone know this? Could it be from LDN? The only thing I found on the net were Brain zaps from Anti Depressant withdrawl. But I don't take that. Only LDN.
It's driving me crazy not knowing whats going on. I'm so afraid of a stroke.

Hi

I had it too, it lasted a few months, gave me terrible headaches and then it went away. It is very scary I agree. I even asked my neurologist a scan to be sure not to run the risk of having seizures. My brain turned out to be 'fine'.
This was about a year ago, things are much better now.

 

[Henk]

Thank you for responding Marlene. I just could'nt find this symptom on the internet. Scary. Maybe my brain is somewhat healing with LDN and those are Signs of activity. Soon I will increase the LDN to 3 mg and see what happens. Hopefully it will disappear. Do you have tinnitus as well? Was it connected with the zaps? My tinnitus is just going crazy. it changes sound and place all the time. sometimes in the ear, sometimes in the centre of my head, sometimes with pressure on ears.
Why is my body doing these things????? I'm scared of my own body because I never know what will come next. God, I hate this illness.

Hope you continue to improve

Henk

 

[Sushi]

Thank you for responding Marlene. I just could'nt find this symptom on the internet. Scary. Maybe my brain is somewhat healing with LDN and those are Signs of activity. Soon I will increase the LDN to 3 mg and see what happens. Hopefully it will disappear. Do you have tinnitus as well? Was it connected with the zaps? My tinnitus is just going crazy. it changes sound and place all the time. sometimes in the ear, sometimes in the centre of my head, sometimes with pressure on ears.
Henk

Hi Henk,

I don't know what dose you started with on LDN, but I found it was better not to raise the dose until any symptoms that seemed related to LDN resolved. I would let them resolve, then wait another week before raising the dose and I never raised it by more than .5 mg. This way I avoided a lot of the annoying symptoms that you can get with LDN.

Did you start at a very low dose (1.5 or below?) If you started higher, your dose may simply be too high.

Best wishes,
Sushi