Tried Low Dose Naltrexone (Ldn)- My Experience

[targs66]

I recently started taking low dose naltrexone (LDN). I'm don't believe many of the claims that are made online about it (it will cure MS, cancer, etc.), but when you get past the nonsense, there do seem to be a lot of people that just feel better taking it. I decided to try it for a number of reasons:

- I've had a bad "flare" since July, and among other things, am really struggling with weird neurological symptoms, including increased pain/stiffness in my left leg and arm. I've heard that LDN is useful for pain.

- I'm in a situation that has me increasingly stressed and depressed, which I know is contributing to my feeling bad. I hear that LDN may help mood.

- I have unrelenting insomnia, and LDN is supposed to help.

- I was curious about the claim that b/c LDN blocks endorphin receptors, it makes your body increase endorphin production. I don't do well with most meds, including anti-depressants (I'm hypersensitive and the side effects are too much) - thought that maybe LDN would be a feasible alternative to anti-depressants.

- I am in England and the NHS will do virtually nothing for me. I just couldn't face going back to my GP and explaining that the leg pain is keeping me up at night, that I'm worried about the tingling/weakness, etc. only to have him prescribe yet another tablet that doesn't work or that I can't take. LDN is something I can get with minimal effort and cost.

Anyways, I ordered it online. I had a good phone consultation with a doctor who was quite reasonable and who didn't make any crazy claims about how it would solve all my problems; just said that he felt that some patients felt a bit "brighter" in a very subtle way - a bit more energy, improved mood, improved sleep.

I've been taking it for just over two weeks now, with mixed results. I started with a bit less than the recommended dose - the insert that came with the med said that CFS patients should start very slowly; plus I tend to be hypersensitive to most medications. I have been taking about .25 ml at midnight, which is bedtime for me.

Pros: I fall asleep without difficulty and can sleep very deeply for about six hours - bliss. I actually wake up feeling a bit refreshed. I've noticed that my mood seems a bit better - I haven't been spiralling into the devastating negative thoughts.

Cons: Unfortunately, I've been far too sedated during the day. I have trouble with concentration anyways - this is almost unbearable. Very simple tasks are even harder now. I wonder if my "brighter" mood is just b/c I am so anesthetized?

In addition, I have to admit that I'm very achy, and it seems to have gotten worse. It's not just the usual leg pain; I feel a bit flu-y with aches all over. At times I've had chills, but that seems to have improved/lessened over the last few weeks.

I'm not giving up on it yet; I understand you're supposed to give it several weeks. I've lowered the dose so that I can function during the day (I work very part-time, about 1 - 2 afternoons a week, and was feeling like I couldn't even do that). The sleep benefits are great, but I do feel far too "drugged" during the day.

Anyways, I thought this might be of interest to anyone who's considering taking it. (Still feeling groggy - I hope this makes sense!)

[HopeSprings]

Thanks for letting us know. My CFS Dr. recommended LDN, but I didn't jump on it because I'm worried about sensitivities. I am also desperate for good deep sleep and have the terrible nighttime leg pain too, but wouldn't be able to trade good sleep for daytime drugginess. My cognitive/brain problems are so bad, I would never be able to take something that makes this worse. Keep us posted - I'd be curious to know if this side effect lessens with time. I do hope it works for you.

[Chaos]

Thanks for posting this info. Please keep us informed on how things progress with this. I'm going to see a doc who uses this in his practice so am very curious to hear how others do with it.

[jpjd59]

Thanks for the info. I also would be curious to see if the groggy feeling goes away after being on it for awhile. I read somewhere that LDN is supposed to help reset the immune system. Did the doctor mention anything like that to you?

[issie]

It's one thing on my list of possible things to try. There is a girl in Europe that has been on it and is PMing me of her progress. Seems to work really well for her. Haven't heard from her in awhile - so hoping things are still going in the right direction. Last time she wrote, it was almost like a miracle for her.

And, yes, I have heard that it helps with autoimmune issues and that is something I'm interested in.

Issie

[icesktr189]

My Mom has been on it for a couple years now (she has POTS and Crohns Disease) and hasn't had a single flair since. Her best friend has MS and went from being wheel chair bound to walking and symptom free with no new lesions. It will only help if you have autoimmune issues. That is why some POTS patients don't see improvements is because it's not autoimmune related. My brother also takes it for his ulcerative colitis and has no symptoms either.

[issie]

Dani, I know Dr. G has seen you and your mom. What's his opinion on it?

Issie

[targs66]

Thanks for all the responses! I took a lower dose yesterday, and took that earlier in the evening, so that I could work this afternoon. My sleep was definitely not as good as it was on the higher dose (which was still a very minimal amount), but I felt less "drugged" at work this afternoon. (I was very tired at work and napped as soon as i got home after my little 4.5 hour shift, but that's normal for me.) I'm going to stick it out, though, for a bit longer, even if I have to take less.

hi Naomi and Chaos - I'll definitely keep posting. Unfortunately, I feel like I make a poor "guinea pig" because I am so ridiculously sensitive to meds. I'd be very curious to hear how others with CFS do on this medication.

jpjd - the doctor was quite conservative, and didn't really talk about the effect on the immune system (however, it was just a brief phone consult so that he could fill the Rx). There was an insert that came with the mailed prescription, and it didn't mention it either - I wonder if they are being very careful not to make claims that are not entirely proven yet -?

Issie - let us know if you decide to start taking it?

Dani - wow, glad to hear how well your mom and her friend are doing on it! My brother has MS, and I often wonder, given the family connection, whether my problems are also autoimmune related. Do you have any idea as to whether it took them some time to adjust to side effects?

As I said, I'll keep posting about it.

-Targs

[HopeSprings]

LDN is for autoimmune? I'm confused. The CFS Dr. said it was an immune booster... not suppresant. If I was feeling better, I'd look it up, but I'm feeling too poorly at the moment. Can someone tell me briefly what the mechanism for this drug is supposed to be?

[Chaos]

Naomi- Good question. I'm not sure they really know. From my reading anyway, it sounds like people are claiming it's both. At high doses it's used for HIV but at lower doses it's being used for a lot of autoimmune things like rheumatoid arthritis, MS etc as well as Fibro and CFS. I think one of the mechanisms it works on is it blocks the opiate receptors but it also does several other things...which of course I can't remember now...thank you brain fog.

[icesktr189]

LDN doesnt boost nor supress, it regulates. The insomia and side effects go away after a couple weeks, but if you change doses frequently, it will take longer. Even though its helped my mom with her crohns, it has does nothing for her POTS.

The only thing i have ever heard its used for is autoimmune issues. Some say it helps pain because it can give you a sense of euphoria in the very beginning.

issie, Dr. G is looking into MS so i should know soon enough!

[issie]

I hope you get some answers Dani - I'm sure you will start the LDN if the answer is positive on this. Will he give you a script for it?

Issie

[HopeSprings]

LDN doesnt boost nor supress, it regulates.

Ok, thank you. That makes sense.

[Zap]

Is there a list anywhere of the definitive tests that should be done to rule out autoimmune POTS (and therefore see if LDN would be beneficial)? If not, maybe it wouldn't be a bad idea to compile a list of "tests of significance" as a quick reference for all causes. I only have my generic "dysautonomia" diagnosis so far, but I still believe that the underlying mechanisms are the same (POTS or otherwise). I have not been given ANY reason for my dysautonomia, and I think that would be most helpful in attempting to treat it!

I'd definitely be game for trying this, if there was a reason to. At least I know from my research that it won't help with migraines.

[targs66]

I've also read a lot of contradictory things about LDN. I'm not sure that anyone really knows how it works, and it does seem to work differently on different people. Like I mentioned, the doctor with whom I had a consult didn't say much about how it worked, just that in his experience, his patients felt a very "subtle improvement" in their mood and general feeling of wellbeing. He said the effect was so subtle that some patients felt it wasn't doing anything, stopped taking it -- and only then realized how it actually was making them feel a bit better and resumed taking it.

I can't say I've come to any big conclusions. I am still on a very reduced dose (which is typical for me) b/c the daytime grogginess was just too much. I had a few nights of very bad sleep recently, but can't necessarily attribute that to the LDN. As a bit of an experiment, I took a tiny bit (literally, a few drops) during the day today. I was feeling very stressed, and I think it did calm me down a bit. I'll take my usual little bit tonight and see how it goes.

Anyone else want to be a guinea pig? Please keep us posted!

As

[Guest mattgreen]

http://chriskresser.com/rhr-testing-for-sibo-graves-disease-and-all-about-anemia

And if you’re wondering how this relates to autoimmune disease, we know now that white blood cells have receptors for these endogenous endorphins, and that suggests that the endorphins have an immunoregulatory effect. And sure enough, later research showed that low-dose naltrexone stimulates T regulatory cell function. The T regulatory cells balance the immune system, and they turn off the inflammatory response once it’s turned on, and that’s a characteristic of autoimmune disease, is they’re often runaway inflammatory responses. They’re basically inflammatory conditions run amok, where you get an inflammatory process and it just goes on and on and doesn’t get turned off. So low-dose naltrexone, there are studies examining it in multiple sclerosis, in fibromyalgia, Crohn’s disease, probably the most well-known and best-designed trials, and it was remarkably effective for Crohn’s disease. There was something like a 77% remission rate, which is just unheard of for a Crohn’s disease treatment, and with no side effects compared to placebo, which again, is unheard of because most of the drugs that are used to treat Crohn’s are pretty potent and can cause some pretty nasty side effects, like prednisone and Imuran and Remicade and some immunosuppressive drugs.

Interesting stuff from Chris Kresser. If you do a search on his site, you'll find he talks about it quite a bit.

[radiohfan23]

Thanks everyone for the info. I just started taking this last night. 1.5mg at bedtime. I slept quite deeply and an hour longer than usual, other than that nothing else thus far in the way of side effects/benefits. I am staying at this dose so I'll check in periodically with my progress.

[targs66]

Thanks for posting, Radiohfan. I started at a MUCH lower dose (.25 mg at bedtime) but that's typical for me. Even at that dose, I felt extremely dopey, so I lowered it even further. (I was literally having trouble speaking - not fun.) Please let us know what you think.

I stopped taking it two nights ago, but may try it again. I took it for a full month, but by last week was just taking a few drops at bedtime. The daytime grogginess/dopeyness was just too much -- one of my biggest problems is unrelenting exhaustion, and I just was feeling weaker and drained. I worked this afternoon (4.5 hours) after not taking it for two nights and felt clearer than I've felt in a long time. However, I'm willing to admit that at such a low dose, maybe the LDN wasn't the problem (or conversely, that the lack of LDN may not be the reason for the relatively clear head today) - ? It's so hard to tell, given that I can feel very bad with new symptoms for no apparent reason, so I don't want to attribute everything to the LDN. As I said, I don't think I make a very good guinea pig!

Given all the apparent benefits of this med, like I said, I don't want to entirely give up on it. I am going to give it a rest for at least a month and then maybe try it again.

As always, would love to hear anyone else's experiences.... keep us posted, Radiohfan.

[ramakentesh]

I know of people that have had amazing results from LDN for MS and Ankylosing Spondylitis. Reduced flares and severity. I know of some with CFS that swear it has halted progression of their illness. Mixed results are reported for POTS but its worth reading reports.

[Blueberry]

On 9/18/2012 at 8:38 PM, targs66 said:

Thanks for all the responses! I took a lower dose yesterday, and took that earlier in the evening, so that I could work this afternoon. My sleep was definitely not as good as it was on the higher dose (which was still a very minimal amount), but I felt less "drugged" at work this afternoon. (I was very tired at work and napped as soon as i got home after my little 4.5 hour shift, but that's normal for me.) I'm going to stick it out, though, for a bit longer, even if I have to take less.

hi Naomi and Chaos - I'll definitely keep posting. Unfortunately, I feel like I make a poor "guinea pig" because I am so ridiculously sensitive to meds. I'd be very curious to hear how others with CFS do on this medication.

jpjd - the doctor was quite conservative, and didn't really talk about the effect on the immune system (however, it was just a brief phone consult so that he could fill the Rx). There was an insert that came with the mailed prescription, and it didn't mention it either - I wonder if they are being very careful not to make claims that are not entirely proven yet -?

Issie - let us know if you decide to start taking it?

Dani - wow, glad to hear how well your mom and her friend are doing on it! My brother has MS, and I often wonder, given the family connection, whether my problems are also autoimmune related. Do you have any idea as to whether it took them some time to adjust to side effects?

As I said, I'll keep posting about it.

-Targs

It might be worth getting checked out for lyme disease and co infections. Find a good lyme literate gp if you can.  Alot of people who want tests get them sent off to German labs. Have a look at Tick talk uk . Best of luck in finding out whats going on. 

Edited June 25, 2020 by Blueberry