Low dose Naltrexone

[oerganix]

Laurel, Sushi is our resident expert on this subject and she said just about everything in this great post. The only thing I would add is that some have started as low as 0.5mg and finally worked up to 4.5mg. Like Sushi said, everyone is different. I saw on another forum that the doc who originally said it should be taken at night has changed his mind and now says 'take it however it works for you'. It seems that for some of us, our circadian rythms are messed up - this might account for the differences in optimum time to take it.

 

[oerganix]

Yahoo! I finally received my naltrexone. I am doing it the do-it-yourself way. I have dissolved a 50mg tablet in water and will take the equivalent of 1.5mg tonight at about 9pm. More tomorrow.

 

[Sushi]

Yahoo! I finally received my naltrexone. I am doing it the do-it-yourself way. I have dissolved a 50mg tablet in water and will take the equivalent of 1.5mg tonight at about 9pm. More tomorrow.

Yippee!

Let us know!

When you dissolve it that way, you have to keep shaking it as you take out your dose--it seems to be suspended rather than dissolved. I'm sure you remember, but keep it in the fridge in a glass bottle--brown if possible.

Good luck.
Sushi

 

[oerganix]

Well, I'm not the new woman I was hoping to become overnight, but I slept as well as I ever do(n't), with frequent awakenings and the need to change positions frequently because of the pain. I did wake up a bit more cheerful than usual, probably because I feel more hopeful than I did yesterday. The idea that I may be able to DO something to help myself is buoying me up.

Sunday was the first day of Chinese New Year; I feel that this is the first day of MY new year. It's the year of the of the white metal Tiger.



So, Happy New Year to all of us!

 

[oerganix]

The European LDN conference of 2010 will be focussed on CFS/ME as stated on The Mary Bradley show. They are also looking into having an online webcast of the conference for people around the world to watch. The dates of this conference will be April 23 and 24. April 24 will be for the general public and will be broadcasted.

Here's the latest radio show where this is stated:
http://www.blogtalkradio.com/mary-b...the-mary-bradley-show.mp3?localembed=download

Here are more radio shows on LDN:
http://www.blogtalkradio.com/search/mary-boyle/

Thanks for this, Frank. I finally went there and found it interesting and worthwhile. This link on their forum, shares some experiences of one woman who has used LDN for over a year. It is very encouraging and answers, at least for her, the question of whether you have to take this forever, if it works for you. (You don't, according to her experience.) http://forum.ldnresearchtrust.org/index.php?/topic/990-ldn-mechronic-fatigue-syndrome-dorothy/

What's going on with me:
I started out with 1.5mg and didn't feel anything different, or maybe I felt a little better, but that could have been "placebo affect" since I was to happy to start it. I slept as well, or as poorly, as usual. Got up feeling more cheerful than usual.

Next evening, I decided to up the dose, thinking I could always back down if needed. So I took 3mg. I slept better than usual, had a slight headache on one side of my head and took aspirin for it. I think I dreamed, which I haven't done, or haven't remembered in recent memory (which is about 10 minutes, ha, ha.) I got up feeling cheerful again, although the day had some non-CFS setbacks for me. I did as much or more, physically, as I ever do.

Last night, I decided to up the dose to 4.5mg, since I had nothing bad at the lower doses. I slept well, got up feeling great and have had a good day. I feel a little more energetic and a feeling of well being that I haven't had since November. I had given up my energy med, NADH, in order to afford the LDN, so I'm coming from an energy deficit right now and not yet back up to where I was while using NADH, so time will tell on that question. I did not have the "pay back day" today that I usually have after the very physical day I did yesterday. FWIW, I also feel a lot more sexual energy than usual. We'll see how that goes...

OK, I'm still listening to the first radio show in Frank's post and loving it. Going for a walk, just for going for a walk, when it finishes.

 

[oerganix]

http://www.ncbi.nlm.nih.gov/pubmed/17222320

LDN a good treatment for Crohn's disease.

 

[Sushi]

Good going! Congratulations:victory:--so far so good. And...there is a hormone connection for both men and women--though not everyone seems to have changes. For me--hot flashes sometimes. Not a prob, just a slight annoyance. :worried:

Sushi

 

[Righthammer]

Just started LDN last week and thought I would update on my progress.Started at .5mg due to previous bad reactions from medications.Little sleep the first night and some gut discomfort but nothing new there.. Felt a lot more energetic and brighter the next day despite the lack of sleep.Also anxiety levels were really reduced. As a result managed to do a lot more in a few days than the 3 weeks previously.Slept a lot better the 2nd and 3rd nights with 5 or 6 hours of deep sleep..Decided to raise the dose to 1mg the next nite as doing so well at .5mg.Another sleepless night..Struggled to get a good nights sleep at this dose ..Upped to 1.5ml last nite ..same effect little sleep. After feeling so good for the past week and doing a lot more ..felt the effects of a crash yesterday evening..woke up this morning with severe headache ,sore throat , runny nose etc...
Just wondering if anyone else has had problems with raising the dose ..I felt very good at .5ml and having been having issues since raising the dose .. maybe I should have stayed at .5ml ? Also does anyone take their dose during the day with success as the effect on sleep is a big issue. Very hopeful about this drug so want to give it a good chance.

 

[oerganix]

Hi Righthammer. It sounds like maybe you should drop back at least to 1mg for awhile. From your post, it seemed to not have such bad affects for you. And you could also go back to .5mg. Most posters on this thread have had to go slow - maybe you too.

It's interesting you mention 'gut discomfort'. A stomach ache seems to be my major side affect right now, and it is lessening a little more each day. I've also had headache, but only on the left side and pretty mild. I'm sleeping better than I have in decades, without meds. And sleeping more. Feeling more cheerful, better able to cope with stressors. I overdid it a couple of days ago and had the usual crash, had to stay in bed most of the next day, so I'm still waiting for more energy to be consistant. And still learning to be patient with myself...

I, too, am very hopeful. Welcome to LDN, good luck and keep us posted.

Hi to Sushi and all who are doing LDN. Onward and upward.

 

[dancer]

Hi, all!
I started with a half of a 4.5 LDN pill at bedtime about six weeks ago. the first week or so my already poor sleep quality was even more disrupted. But after about a week, I began to sleep (and dream) and have more morning energy than I've had in a while. VERY hopeful.

Then about a week or so ago I decided I was ready to go up to the full amount and took the whole pill at bedtime. Sleep disruption was really bad for a couple nights, but is now improving again.

But I've also had more "crash" symptoms. Not sure if those are from overdoing a bit with the new energy I was gaining...or if it's somehow a direct result of the LDN in some way. I've particularly had much more trouble with IBS - which hadn't been an issue for months (since I started probiotics, allergy treatments, and a g-free/sugar-free diet).

It's so hard to know (because of the fluctuating symptoms in CFIDS) whether the setbacks are because of the LDN or would have happened anyway in the course of the ebb and flow of the "bad day/worse day" pattern. I'm very interested to hear if others are finding LDN seems to flare tummy issues.

I'm still sticking with it. I actually had one hour (before starting the higher dose of LDN) of feeling like "me," especially related to cognitive issues. I crashed hard after than hour, but it was exhilarating and gave me hope that I'm still in here somewhere.

 

[Sushi]

Hey Dancer,

So far sounds good. Here is my experience: the "crashy symptoms for me were from feeling energy and wanting to use it without my body have developed the necessary stamina. Sort of like, you feel the energy, it feels so good that you run with it and forget you have to work up to things slowly.

As far as digestive issues, also consider what kind of fillers and other ingredients are in your LDN. If it is from a compounding pharmacy, ask them. Some people have had trouble with different fillers.

Best wishes,
Sushi

 

[Righthammer]

Hi Righthammer. It sounds like maybe you should drop back at least to 1mg for awhile. From your post, it seemed to not have such bad affects for you. And you could also go back to .5mg. Most posters on this thread have had to go slow - maybe you too.

Oerganix -Thanks for the advice - I have decided to go back to a dose of .8ml for the moment .I will give it a couple of weeks before I decide to up the dose again.I probably need to just up the dose slowly rather than thinking I have to get to at least 3.ml as soon as possible.Its possible I just had another crash from overdoing it but I think I may have provoked a major immune response and I have not had a cold or flu since I got sick.

 

[oerganix]

Righthammer, good to see you're giving it another go. If you have the time and energy to read through the thread you'll see that Sushi had to start low and go slow, back off and build back up, but now she's up to speed and doing great. So.....patience.... Others have had to do the same, so it's not unusual and the rewards are great. It sort of sneaks up on you, once you get the rhthym right. You are probably right, too, that you are getting some immune response. Others have had all kinds of similar stuff come up.

Dancer, I suspect you are overdoing it when you feel better. At least that is what I've been doing. It's tempting to use that energy while it's there. Almost a feeling of use it now, it might not be there later. But, as Sushi said, our bodies and metabolisms are deconditioned to physical exertion, so it will take time to get back in some kind of shape and have the stamina we crave.

Sushi, good point about fillers. Nothing I can do about it, though, as I am doing my own 'compounding' with a 50mg tablet, so I will just tolerate the stomach ache for now. I haven't had the gut/digestive issues that so many others have, so this is a new wrinkle for me. It does help to take a Tums or two, and to drink a whole glass of water with the LDN.

 

[dancer]

Great thoughts, all. I do think it's hard to not overdo activity when there are hints of energy after so long without any.

But I also have found throughout this illness that crashes often hit on their own timing, without any increase in physical or mental activity to point to as a cause. That's one of the things that drives me nuts about CFS/ME.

I am noticing that the disrupted sleep (that happened on raising the dose of LDN) has eased again. Slept well last night. So I'll see if the tummy issues will also calm in time.

Every hint of improvement is SUCH a celebration for me! Hoping this keeps helping! I'm at about 10-20 per cent function and would love to head toward 30 or 40.
Blessings, all!

 

[oerganix]

Great thoughts, all. I do think it's hard to not overdo activity when there are hints of energy after so long without any.

But I also have found throughout this illness that crashes often hit on their own timing, without any increase in physical or mental activity to point to as a cause. That's one of the things that drives me nuts about CFS/ME.

I am noticing that the disrupted sleep (that happened on raising the dose of LDN) has eased again. Slept well last night. So I'll see if the tummy issues will also calm in time.

Every hint of improvement is SUCH a celebration for me! Hoping this keeps helping! I'm at about 10-20 per cent function and would love to head toward 30 or 40.
Blessings, all!

So true about the unexplainable crashes! And that hints of improvement are so wonderful. I'm at around 35-40% functioning and looking forward to better times. Yeah! Blessings to all!

 

[Diva55]

LDN in the UK

Just read this on the Yahoo LDN group - very exciting news!

I personally have spent months persuading a specialist to let me have LDN and finally won through! Haven't started it yet but ever hopeful for FM / CFS.

---------------------------------------------------------------------------------------------------------------------------------------------
It was just announced on the Facebook LDNNow site that Jayne Crocker was able to spend some time this am speaking with the Prime Minister of the UK Gordon Brown about getting LDN available as a front line treatment.

This is wonderful news. It looks like LDN is on its way at last. By the way, does anybody in the US have any idea of how to contact President Obama? If they can do this in the UK, why can't it be done in the USA?
Judy H
To better health through knowledge
Started taking LDN (Low Dose Naltrexone) on 1/21/2009 for Fibromyalgia, Hypothyroid, PCOS and Restless Legs
http://health.groups.yahoo.com/group/LDNforFibro/

 

[Jenny]

Started LDN one week ago

I've been on LDN a week now.

I have 4.5 mg capsules and have been dividing these and mixing with water.

Day 1 - divided capsule into 4 and took one dose (approx 1.1 mg) at 10.30 pm. Had bad night, but woke up feeling refreshed and ridiculously cheerful. Not had that refreshed sleep feeling for 5 months. Other symptoms - flu-like malaise, exhaustion, pain, no appetite- much the same.

Day 2 - 1.1 mg. Bad night again, but woke refreshed and happy. Other symptoms diminished. But at 10.30 pm suddenly crashed. (Not due to over exertion as still in bed all day.) Appetite slightly better.

Day 3 - 1.1 mg. Good night. Again woke refreshed, but pain and exhaustion very bad.

Day 4 - 1.1 mg. Good night, refreshed, felt good am. But at 2pm sudden crash with all my 'worst ever' symptoms - sudden rapid heart beat, stabbing pain behind eyes, severe pain mid-back, aching all over, severe nausea, sudden sleepiness, gasping for breath, feeling poisoned. Could only eat a hard-boiled egg and a banana all day.

Day 5 - Upped dose to 1.5 mg. Good night. Woke refreshed, OK am. But again at 2pm same crash as yesterday but not quite as severe. Appetite better.

Day 6 - 1.5 mg. Good night. Woke refreshed. Best day for a long time. Managed to get out of bed for a few hours and sit in the sun. Appetite not too bad.

Day 7 - 1.5 mg. Bad night. Woke at 4 am with all severe symptoms. Finally got back to sleep at 6 am. Feeling rough today, can only lie in bed and listen to radio. Hardly eating anything.

I'm taking a barrowload of other things so can't be sure what's going on, but I'm certain the LDN is helping a lot with the way I feel on waking. For 5 months I felt as though I had a severe hangover and was sometimes unable to surface till 11 or 12 am. Now I'm awake and alert by 8 am. And at the start at least it had dramatic effects on my mood.

One of the things I'm taking is olive leaf extract - doc said it would 'go well' with LDN, whatever that means. But I've cut down from 4 to 2 a day as since restarting it a few weeks ago I've had no appetite. Perhaps 4 is too much at the moment.

I'm going to keep with the 1.5 mg dose for a while and see how it goes.

Jenny

 

[Sushi]

Hi Jenny,

Thanks for posting your LDN diary. We can all learn from others' experiences.

Remember when you are considering the effects of LDN and other things that you are taking that LDN acts as an immune system modulator. If I rememeber correctly, olive leaf is in the "killer" spectrum for baddies. It is possible that your immune system together with the olive leaf are "attacking" things.

That was my main "not so fun" reaction to LDN--every time I raised the dose, my immune system went after things more aggressively which made some symptoms worse.

For me the sleep issues resolved and are no longer a problem.

Thanks again,
Sushi

 

[Samuel]

Can an immune reaction cause nausea and vomiting?

 

[oerganix]

Can an immune reaction cause nausea and vomiting?

It could, as in "flu like" reaction. My major side affects have been slight nausea and mild stomach ache. I've taken to chewing a couple of Tums after I take it.

I've been feeling 'fluish' and rotten for several days and I hope this means something is healing, as in, immune system working better. Who knows.... I've been sleeping a lot more and that's ok.

On the good side, I'm sleeping better than I have in decades, no restless leg syndrome, not even getting up to go to the bathroom some nights. And waking up feeling cheerful, optimistic and philosophical instead of the former dread, pessimism and grumpiness that used to start each day. Hope it lasts...

Still taking 4.5mg about an hour before going to bed and being sure to stay upright for at least a half hour after taking it, to avoid any possible reflux as it is so bitter.