Low dose Naltrexone

[Angel]

LDN or Naltrexone 4.5mg

I have been taking low dose Naltrexone 4.5mg for several months now. My Doctor suggested it because I was having a flare up of nerve pain in my legs. I felt as if my central nervous system was overwired. He said that his patients with MS do quite well also on it.

Initially each month that I was on it I had less pain than before. He said it heals the nerve endings and grows myelin sheath.

I started around March 2009. Now, at the end of August 2009, I would say that my overall body pain is the lowest that it has been in the last 19 years since I got Fibromyalgia and Chronic Fatigue/ME.

I also had 3 car accidents during that time which meant I had a couple of years where I was taking things such as Oxycodone and then trammadol.

When he told me that I had to be off of all pain medication for 10 days before I could start the LDN I didn't think I would be able to handle it. I am quite amazed at how it has reduced my pain.

I believe that during this time I have also greatly increased my exercise. I swim a few times a week, (10 - 20 laps in a 60ft pool), walking up to 3 miles a few times a week, and swing dancing again.

I cannot just do one of these things every day. It has to be paced. I don't do all of the laps at once. I do a couple, rest and then do a couple more. If I have had a high activity day the day before, I stick to 10. If not, then I do 20.

If I walk a long distance one day, I don't swim. If I am going dancing that night, I don't swim or walk that day. I can't just do it all without being very careful, Sometimes I start out on a walk that I think will be about an hour long, and after 10 minutes I'm done. I guess I just really don't know what I'm going to get on any given day.

However, when you look at the months and years of inactivity when any one of those things was impossible, then it is a great accomplishment.

Sometimes I have a good 2 - 3 weeks, and then the 4th week I can't exercise at all. It all has to be paced, at whatever level your body is at that day, or week. I do believe the low dose Naltrexone helped me to get to that level.

My experience with low dose Naltrexone has been 100% positive, and I would encourage others to try it.

 

[SaraM]

Angle,

My Fibromyalgia and adrenal fatigue started after the first car accident I had in my whole life and.Then,the second car accident happened two years later. Till that point I only had pain in my lower legs but gradually other parts got painful ,too. Like you I am wondering why so many people have not tried LDN yet.

 

[Marylib]

Do we have a thread already for LDN? I am going to start a trial of it and would like to share my experiences with others.
Best to all,
Marylib

 

[SaraM]

http://forums.aboutmecfs.org/showthread.php?t=379

 

[*GG*]

Update

I was already suffering from a flare up when I started taking LDN. My Dr had me start off at 1.5 for 2 weeks then 3.o mg. I told them I was still having the flare up and other symptons, so I have been off it for the last 3 nights and was told to stop for 1 week.

Hope when I restart that it does not exacerate my condition!

GG

 

[Angel]

flare

Hi GG:

Well, I'm a patient for sure and not a Doctor, but I don't know why he would have had you stop the LDN because of a flare up. It was because of a major flare up that my Doctor had me go off of all pain medication for two weeks, and then go on LDN.

LDN has an extremely long list of pain medications that cannot be taken when taking low dose naltrexone.

It partially blocks the neurotransmitter that tells your brain you have enough of your own natural opiods. Your brain then thinks you aren't getting enough, so it makes more, and your pain begins to drop.

My first results began quite soon, and every month my pain level was lower than the month before. I have increased my physical activity so much it is amazing.

Before I started the nerve pain in my legs and other areas were extreme. Now if I have nerve pain it is for a second or two on occasion, or maybe a minute.

I don't understand why it would cause a flare to be worse unless you were taking a pain medication.

Have you considered taking the 4.5mg dose?

 

[being]

What is everyone's experience with what time you take LDN? For a long time I read that people take it at night before they go to bed, then recently I think I remember reading someone saying that it didn't matter when you take it.

Also, is there any correlation with insomnia and being a 'responder' vs. 'non-responder'? Like did anyone experience insomnia and then respond or not experience insomnia and not respond or vice versa? How long did the insomnia last? How long did it take before you noticed anything? What about different dosages- how long did you try each dosage before moving up/down? Any info is much appreciated, I just got a doc to prescribe it yesterday and don't want to put myself through the meat grinder if at all possible!

 

[Angel]

time to take LDN

Hi being:

My Doctor instructed me to take low dose Naltrexone one hour before bedtime. I have read on the Internet to take it at 9 P.M.

The reason is that it blocks your opiods for 3 - 4 hours and during this time there is an increase in the production of endorphins in your body. Endorphins are made during the night.

Low Dose Naltrexone will enhance your immune system and lower your pain level.

I would recommend googling LDN and reading the information on a couple of the web sites to understand how it works. It is recommended for both chronic fatigue and fibromyalgia.

 

[Sushi]

Hi Being,

I am also taking LDN and have been for 5 or 6 weeks. Apparently the two main researchers on LDN have said different things about when to take it. One says take it anytime, but you are likely not to feel great during those 3 or 4 hours when your endorphins are blocked, so taking it at night lets you sleep through it.

The other, Dr. Bihari (can't think of the first doc's name) says that the body naturally produces its endorphins between about 2 and 4 a.m. and it is important to have the receptors blocked at that time. His recommendation is to take it after 10 p.m. Dr. Bihari has more experience as a clinician, the other doc is more a researcher.

I read several yahoo forums on LDN, and I have not read of any correlation between having initial insomnia and whether it works for you or not. Some have insomnia, some don't. For most it only lasts a few days. For me, every time I raise my dose, I have mild insomnia for a couple of days, and then actually sleep better on further days.

Dosing also seem to be individual. Because I had read of many people starting with a higher dose, having problems and then having to go to a lower dose, I have been cautious. I started with the lowest dose that is thought to be effective--1.5 mg--stayed there for a couple of weeks, and since then I have been raising it by half a mg every 2 weeks or ten days. I have not had any difficulties doing it this way. Others have been able to either start with a higher dose (like Angel) or move up on their dosing more quickly.

I am cautious because every time I raise the dose, my immune system seems to work better and it finds something to deal with--lately it has been an old sinus infection. When the immune system targets something you usually feel a bit sick for a while, so that is why I have been going slowly.

I am very pleased with LDN and hope to go up to 4.5 mg--which is the max recommended dose. Aside from activating my immune system, for me, it has reduced PEM, normalized my temperature and helped with sleep. It is not the full answer, but does seem to help most with certain aspects of this disease.

Hope that helps!

Sushi

 

[being]

Hi Being,

Dosing also seem to be individual. Because I had read of many people starting with a higher dose, having problems and then having to go to a lower dose, I have been cautious. I started with the lowest dose that is thought to be effective--1.5 mg--stayed there for a couple of weeks, and since then I have been raising it by half a mg every 2 weeks or ten days. I have not had any difficulties doing it this way. Others have been able to either start with a higher dose (like Angel) or move up on their dosing more quickly.

Sushi

Thanks,

That's pretty much what I'm thinking of doing too, except in 1.5mg increments, which is what my pills are. What dosage are your pills? You mention half a mg, do you take several .5mg pills? I'm trying to think of ways to maximize the money aspect, I've read some stuff about making your own liquid by dissolving pills in a set amount of water then stirring it and taking a dose with a baby dropper that has mg/ml marks. It sounds feasable, I guess we'll see what the final bill is each month.

It seems like it would help because the main cost is from the pharmacy actually having to mix it up and fill the capsules, I don't think the dosage really adds a whole lot to the bill so if there was a way to split up bigger pills into smaller doses it seems like it could save a good bit of money.

 

[Sushi]

Hi Being,

Not knowing how fast I was going to increase my dose, I asked the doc to prescribe 3 mg capsules and that has been a good compromise. I do open the capsules and dump the contents into however much distilled water I need to be divisible into the doses I want. Then you store the extra doses in the fridge in a, preferable brown, glass bottle. I use one with an eye dropper as this makes it easier to extract the dose I want.

I have a glass ml measuring vial, but many just buy a plastic one from the baby section of the pharmacy. It only takes a minute to mix up the doses (after you do the math!) and the only trick is that the naltrexone crystals don't dissolve but are suspended in the water, so you have to keep shaking the bottle well to get an even distribution when you extract your dose. Basicially, no problem!

At the moment I am at 3 mg, so I just pop a capsule at bedtime. This is of course easier, but I like the flexibility of turning it into a liquid. I raise my dose when I find that I have stabilized on the dose I am on. In other words, not noticing any more changes. Another friend with CFS found he had to go up in even smaller doses, due to insomnia. He also gets an immune response every time he raises his dose.

It is actually fascinating to watch the LDN normalize some old problems.

Best wishes on it, and report in on the effects you get.

Sushi

 

[janlynv]

what do u mean by getting an immune reponse??? does it mean that you get sick everytime you raise the dose??

 

[Angel]

immune response

I don't know what was meant by that comment, however, my Doctor takes LDN because it keeps him from getting sick. He is exposed to many illnesses as he sees patients. The LDN increases his immune systems response, so he doesn't get everything that his patients have.

 

[Sushi]

Hi janlynv,

LDN modulates the immune system, so if it is underfunctioning it stimulates it and if it is overfunctioning it damps it down. Mine was hardly functioning at all, which sort of means that I never could raise a fever, and any bugs I was exposed to never were dealt with. I never "got" the flu or colds, just was always partially sick--all the time. I accumulated a bunch of low grade infections that I could never fight off.

Now that LDN is getting my immune system to work better, it has more strength to go after bugs, and yes, it is finding them! So every time I raise the dose I get a bigger immune response and an infection gets targeted and dealt with. It is a good thing in the long run, but for a few days I do feel lousy.

It is dangerous to have an underfunctioning immune system so I am very happy that it is happening, but it is uncomfortable at times. And once my immune system clears up the back log it should be able to protect me from new bugs. That is what I am hoping--and it has been the clinical experience with LDN.

Hope that explains more.

Sushi

 

[jenbooks]

Sushi you have done the simplified protocol for a while, right? Did you get detox/die off type stuff from that?
I had heard lymies didn't do that well with LDN but it's something I'd be curious to experiment with if it did not worsen my periodic insomnia, as I too have accumulated low grade infections.

 

[Sushi]

Hi Jenbooks,

Yes, I have been doing the Simplified Protocol for about 20 months and still am, and detox has been the biggest problem I've had with it. A lot has improved but I have had a great deal of detox as I have been sick a long time and accumulated a lot of junk.

LDN has made the detox symptoms much less. I also recently found out that I am positive for Borellia, but I don't know how active it has been. In any case the LDN has gone really well--it has helped my muscles recover after exercise, has helped sleep (after 2 or three days of more difficult sleep each time I raise the dose), has raised my temperature to normal, and increased immune response.

I have also heard that some with Lyme have problems with LDN--but others don't. Again, seems to be individual. It is cheap and it doesn't hurt to try. It has a short half life and only blocks the opiate receptors for about 4 hours. So they usually say to take it after 10 pm as the body naturally produces its endorphins (natural opiates) in the wee morning hours.

If the receptors are blocked then, the body gets confused and makes a lot more to try to compensate. Then a few hours later, when the receptors are released, you get the benefit of the extra endorphins which in turn modulate the immune system. I have the whole biochemistry of it written down, but that is the Cliff note version.

If you want to try it, it is best to get it compounded so that it is pure and you need to specify that it should NOT be time release. The website http://www.lowdosenaltrexone.org/ has a list of compounding pharmacies who are reliable for LDN. There is one in NYC.

Sushi

 

[jenbooks]

Thanks, Sushi.
I suspect borrelia is the gatekeeper--if you have it, it was the original cause of immunosuppression that led to everything else...

 

[*GG*]

To Jenbooks and Sushi

What is the Simplified Protocol? My Dr did not mention anything about this, re-started my LDN again. Hopefully improvements will come along!

I started at 1.5 mg for 2 weeks but was not feeling better, flare up, so my Dr advised me to stop for 1 week, back on 1.5 to 3.0 mg soon?

Thanks

GG

 

[Sushi]

Hi ggingues,

The simplified protocol is not related to LDN therapy, except that I have found that they work well together. It is Dr. Rich Van Konynenburg's methylation protocol, using tiny does of 5 nutrients to unblock methylation function.

If you aren't familiar with this, get back to one of us. Rich (richvank) posts on this forum regularly and has probably given the details on a thread here--if not, I or Jenbooks, can give you links if you are interested.

Sushi

 

[Sushi]

Thanks Cort for correcting the spelling of naltrexone!

Hey everyone,

I have posted occasionally on my response to low dose naltrexone and I think I'll continue to post the changes I observe.

I raised the dose to 3.5 mg two nights ago (slowing titrating up to the recommended 4.5 mg). As has happened before each time I raise the dose, I woke up the next morning with a "Wow! I feel good today." I'd been feeling like crap the day before, so this time I really noticed it.

As this drug modulates the immune system, after a few days at a higher dose the immune system usually finds some neglected jobs to do (like working on low-grade infections) and I feel a bit sick till it clears up the mess. So I am now waiting for the "what next?"

But, I like this drug and so far so good.

Sushi