Feeling Crappy In A Good Way?

 I read an interesting personal experience about LDN with ME/CFS on a forum:

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.



This US focused discussion thread has a lot of activity many reporting good outcomes with LDN, some finding it not suitable for them.

Sushi goes on to say:

Each time I’ve raised the dose–and I am creeping up much more slowly than most–I have noticed these effects for a few days, then my immune system (which has been severely hypoactive) attacks something–usually for me low grade sinus and ear infections that have been there for years–and I feel like crap until that stage of the clean-up job is done.

My hope (and some others have reported) that eventually when I get up to the targeted dose, the immune system will clean up all the back-log and the “feel-normal” effects will become more stable.


She’s now at 4.5mg having increased the dose very very slowly over a long period and no longer feeling ill effects.

I had wondered if it was possible that my recent lingering headache, tummy trouble & feeling like I have a virus (without cold symptoms) could be due to LDN boosting my immune response and maybe finding nasty things in my body to fight.  This personal experience of the user on this forum would seem to suggest it’s possible.  Another user reports feeling very similar to me – improved sleep, less pain and more energy but sort of feeling fluey and run down then not knowing if she overdid it with the new energy or if it’s something to do with the way LDN works.  Yet another user is reporting a mild headache and tummy ache.

I also recall that when I was on 2ml dose previously I felt great for a week to 10 days then felt sort of run down and listless for a couple of weeks (when I then upped the dose and triggered bad side effects).  So I might of sort of been here before.  What’s going to be interesting is what happens in the next couple of weeks – if the yuck feelings go, stay the same or worsen.

I’ve held off voicing the idea that maybe LDN is sorting out my immune system and then fighting off bits of infection as it goes – because it falls into that idea with many therapies for ME/CFS that you have to feel worse before you feel better.  Then you get the counter argument that how do you know the feeling worse isn’t actually a poisioning of the system rather than dejunking it?

There’s a lot of knowledgeable people over on that forum thread.  They are talking about scientific stuff I can’t compute like a connection for one user with rapid weight loss using LDN:

One of the things LDN does is lower TH17. Now TH17 is important for gut immunity.

It’s my hypothesis that in those of us with major yeast/dysbiosis issues the LDN causes malabsorption. My advice would be to stop the LDN for a few weeks (you have nothing to lose) until your weight has come back up to normal.

I’m telling you this because a) I might have a major yeast infection (but not the weight loss) and b) this isn’t like when I tried the garlic tablets to cure ME/CFS there’s some serious scientific stuff and research going on that I don’t fully understand but which I sort of trust.

Ironically Low Dose Naltrexone’s shorter term blockade of the endorphin receptors results in increased endorphin levels in the brain. This occurs because LDN’s blockage of these receptors tricks the brain into thinking endorphin levels are low causing it to compensate by increasing endorphin levels.  Endorphins, which are known as ‘natural pain relievers’, are produced by the HPA axis during exercise, excitement, pain, sexual activity, meditation, acupuncture, massage therapy and by eating spicy foods and chocolate. (The “phin” in endorphin is a take off of morphine). The ‘runners high’ is believed produced by high endorphin levels in the brain after extended exercise.

Endorphins effect the immune system by enhancing natural killer cell response and reducing B-cell (antibody) activity and LDN’s effectiveness is being tested in several autoimmune diseases.

LDN appears to effect the functioning of the regulatory immune cells in the central nervous system called microglial cells. Upon activation by infection or cell damage micoglial cells produce pro-inflammatory cytokines, reactive oxygen species (free radicals) and nitric oxide. Microglial cells may be a key component of the ‘sickness response’ that produces fatigue, fluey feelings, pain, etc. when we come down with an infection. Some researchers believe that microglial cells are chronically turned on in ME/CFS and fibromyalgia. LDN appears to block a receptor on the microglial cells thus inhibiting their activation.


Ummm ok then 🙂 Sounds good to me though!

I don’t have answers  I’m just sharing what I’m uncovering and piecing together as I go on this journey.  And this is just another possible reason I’m feeling crappy at the moment.  I may know more with time.


8 Responses to “Feeling Crappy In A Good Way?”

  1. 1 Sue February 25, 2010 at 8:57 pm

    Wow, lots of great information and interesting opinions here – thanks for reposting. I used to follow an LDN discussion group, but few of the members had CFS, so their experiences were mostly different than mine.

    The first person you quote mentioned that her immune system has been under-active before LDN. Most people with CFS have immune systems that are over-reactive toward viruses and allergies and under-reactive toward bacterial infections. Most of us have low NK cell function – which LDN is supposed to help. A lot of the rest of it is over my head, too!!

    In my case, all of my CFS symptoms were increased when I went up to 4.5 mg for 10 days. I guess it’s possible that was only temporary, though at the time, I hadn’t heard of any others experiencing a worsening, then improving. Maybe I’ll try 4.5 mg again someday and stick with it for longer, though I couldn’t take the worsening right now.

    Thanks for sharing all this – lots of food for thought!


    • 2 rachelcreative February 26, 2010 at 9:39 am

      Yes lot of people of that thread said the same thing about the discussion group I suspect you are referring to.

      I still don’t think that 4.5mg is THE dose. Obviously 3mg has been working for you and I think there’s a difference between bringing back all the symptoms and feeling a little bit crappy.

      Well I mean how I felt on 3ml is a lot different to the feeling I have now on 2ml even with the crappy viral feeling. I think? Ha. Confusing.

      That whole over active under active immune system stuff has foxed me because I seem to have periods of both. But you say the responses to viral and bacterial are different which might explain why I’ve never been able to figure out which I am.

      How does the under and over reactive manifest? Does it mean you don’t pick up viral things because you’re immune is over active or you do pick up everything?

      • 3 ashysheela February 26, 2010 at 10:58 am

        i think i have had definite periods of over-active immune responses, where i feel i am coming down with something, feel worse than usual as if fighting it, but no development of the intial symptoms. This went on for years. I barely had a cold in the usual sense… then last year i seemed to be getting one after another and they really came out! (and hit me hard energy-wise for weeks). I feel that trend is perhaps over also, though it has not been many months since the last one – perhaps i am just being hopeful! I do not know what the official symptoms/characteristics of over-active immune systems are, but i am also very interested to know. Do they wear us out by over-reacting to every little thing perhaps?

  2. 4 ashysheela February 25, 2010 at 11:15 pm

    well, it’s a theory! Let’s hope it’s right and you feel the positives of your body sorting that stuff out soon. Seems very complex but i suppose it would have to be to work. A few more endorphins in the meantime would be nice i think?

    • 5 rachelcreative February 26, 2010 at 9:42 am

      I think I’ve heard different scientific explanations of how this drug works. But they might be saying the same thing in a different way. I can’t get my head around the words 😉

      All I know is that I’ve had 2 lots of 2 weeks when I felt almost good – which I haven’t really had since I got ill. So it must be doing something. Exactly what remains to be seen in the bigger picture I think.

      I like the idea that LDN is like chocolate 😉

  3. 6 ashysheela February 26, 2010 at 10:59 am

    “almost good” that sounds almost worth aspiring to!!

  4. 7 cusp February 26, 2010 at 11:48 am

    This is all fascinating stuff though I’m afraid all the scientific stuff is just beyond me: nothing to do with cognitive doodahs, just that I am and always was crap at science.

    What I wonder is whether you are keeping some sort of score/cahrt of how you feel — generally but also specifically e.g giving the various aspects like, headaches, tummy, energy, concentration, aches and pains etc. a daily score from 1-10. Knowing you and how organised and thorough you are, you’re probably doing this already and I’ve missed or forgotten about it. But if you’re not it may be something to think about….then you’d have something objective and recorded to look back on e.g at 3.5mg on day 5 your tum was 5/10 whereas on day 9 it was better and 7/10.

    I agree with the others re. viruses and bacteria. For years at the beginning I never got colds etc. Then it moved to feeling like I had a cold coming but all came to nought. Then got a cold which seemd impossible to shift and now I get a cold and it takes its course and more or less clears off. Had one last two weeks and seems to be reacting normally.

    Oh well…just my usual rambling thoughts. I really do admire you’re problem solving attitude and that you are willing to share your experinec for the benefit of the rest of us

  5. 8 ChrisMooney78 March 7, 2010 at 3:23 pm

    Found your blog while looking for info on ME/CFS on the internet. I was recently diagnosed with ME/CFS and must admit to feeling lost and confused. In order to communicate with people who know more about it than I do, I have set up my own blog.

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