LDN From 2ml to 1.5ml

The first week at 2ml of LDN I discovered I could eat a lot more things than I had previously been able to.  My IBS seemed to be settling. I felt relatively good.

The second week I had some tummy discomfort but then bloating and IBS is worse around the time when I get my period.  The third week at 2ml my stomach was fairly settled and I ate quite a few meals that I haven’t been able to for a long time.  There was a little discomfort at the time but generally it was ok and I was balancing it out with safe foods.

Then the next week (week 4 at 2ml) I started getting nausea, bloating, gas and cramps after eating. I couldn’t eat hardly anything without feeling really ill. I also felt a bit fluey and headachey a lot.

Even eating “safe” meals was making me feel sick and crampy.  Last week, week 5 at 2ml, was much the same.  By midweek I was eating ultra ultra safe and managing not to feel sick or gassy or bloated or pain *most* of the time.  But I couldn’t even manage safe food like tofu – so my food intake was severely restricted – mainly rice, baked potato, well cooked carrot, mushrooms, a little soy milk with rice cereal and that was about it!  I’m not happy about not getting a good balance especially when I already feel run down.

Now I’m thinking … maybe that weekend at the end of week 3, when I was in Cumbria and felt pretty good but was pushing and has a few normal things like lasagne (yum!) actually triggered a massive IBS flare.  Or maybe I picked up a virus then that is lingering.  But I do know I’ve felt ever so horrible even when I eat safe foods.

SO! I made the decision to lower my LDN dose to 1.5ml in case it’s a side effect of LDN. Now that I’ve been taking it 5 weeks and it’s had time to settle in this could be my body’s settled reaction to the dose.

If it’s not LDN and I continue to struggle with eating then I can go back to 2ml knowing the tummy stuff is just One Of Those Things.  If it *is* the dose then I’ll should get some relief.

This is the theory anyway.

I’m also awarethe eating/tummy stuff could also be LDN working – in that it rebalances my immune system and my body is suddenly fighting things that it hasn’t been able to get a hold of before. That hypothesis is a little more tricky to handle but I’ll go through this lowering of dose to see what that indicates and worry about this theory later.

When I was on 3ml and had a lot of side effects like pain so I dropped to 2ml and over the first 4 days I could feel those side effects lessening until they were gone.

This is day 3 (or is it 4?) at 1.5ml and I have to report that the tummy isn’t much different.  So that suggests either it’s not LDN that’s causing it, or I can’t stomach LDN even at a very low dose.  However, I have had a headache come creeping back in that just won’t shift along with that pain I used to get in my neck and shoulders.  Tummy much the same – headache and pain increasing.  Energy possibly slightly increased.  So confusing!

Going to give it a week and review, then decide if I need another week to be sure … or, or, or … something!  Ugh.

What I really want is to feel like I did that first week to ten days at 2ml when I felt pretty good. Fingers crossed all this tummy stuff is it’s own thing and not LDN related at all.  At least that would mean if I can get past the tummy flare and have gone back to 2ml then I might be back to that feeling pretty good again at some point.

I’ve started to keep a weekly LDN diary for myself to better keep track of side effects and feeling good/bad/worse/better.  I can’t rate symptoms or do day by day comparisons but I can just about cope with recording notable things from the week to reflect on as part of a bigger picture.  Rating symptoms on scales totally stumps me – I think it’s an ME/CFS brain thing that does it.

If I find any conclusions – or indeed more questions – I’ll be blogging about it.


9 Responses to “LDN From 2ml to 1.5ml”

  1. 1 ashysheela March 9, 2010 at 8:40 pm

    so confusing… and disappointing (after lasagne!).

    Hope something becomes clearer or it just gets better regardless!

    • 2 rachelcreative March 10, 2010 at 7:48 am

      Thanks 🙂 It would all be much simpler if I got the effects of doing something at the time of doing it! I’m starting to think I broke the basic IBS rules thinking I was doing better and could get away with it and it promptly punched me in the guts. It kind of sucks when you bring it on yourself even though it’s not your fault that you have the stupid thing wrong with you. Rant rant rant.

    • 3 windingdown April 13, 2011 at 7:06 am

      OMG same exact thing happen to me when I ate Lasenga too!!! If I eat it early in the day Im ok but for dinner, IM SCREWED! weird huh? its a dairy thing? maybe?

      • 4 rachelcreative April 13, 2011 at 7:31 pm

        Hi there. Well for me lasagne is one of those ultimate IBS flare things because it’s got cheese (plus cheese sauce with milk) and dairy is a trigger, and it’s got red meat which is a trigger. Plus for me wheat is not the best thing for me either. There’s very little soluble fibre in a lasagne (only like onion and maybe carrot in small quantities) to balance out the triggering stuff. So it’s a real IBS testing food for me.

        I’ve made lasagne with red meat but used wheat free pasta and cheese sauce with soy milk (easy on the cheese) and that was easier on my tummy. Also wheat pasta with soy mince and cheese sauce with soy milk which was easy on the tum too. But if I eat it two days in a row (fresh and then leftovers next day) it’s too much for my tum to cope with.

        There’s really good information on this site and their advice about upping solubkle fibre in your diet has made such a difference to me managing it http://www.helpforibs.com/

  2. 5 Sue March 10, 2010 at 12:48 am

    Hmmm…I didn’t notice any impact at all on IBS when I started LDN, good or bad. I’m guessing your tummy troubles are unrelated, especially since you’d managed well at that dose for quite a while. For me, LDN effects are immediate – I started it and felt better the next day; I went to too high a dose (4.5 mg) and felt worse the next day – and every day until I went back down to 3 mg. But everyone is different!

    Keeping records is a great idea. I just jot a quick number on my calendar each night before bed – my own 1-5 scale, to indicate how I felt. It really helps to compare and notice trends.


    • 6 rachelcreative March 10, 2010 at 7:45 am

      I read about quite a few people complaining of stomach ache and headaches from LDN so thought it best to experiment so I would know if that’s what’s going on for me. It is starting to feel like the IBS is in flare and it’s a seperate thing to LDN. I’ll give it a bit more time though.

      My problem with scales is probably that I think too much combined with memory problems. So if my scale excellent to terrible – is excellent ME/CFS excellent or properly well excellent. If I’m able to focus on something productive but have a lot of pain, or crash later in the day as a result do I take an average, rate it on the lowest part of the day or the best. Then the problem is I establish the answers to these and other questions then promptly forget what I decided a day or two later!

      So if I keep a simple diary of symptoms with descriptions then I can evaluate on whatever scale I choose on the day I’m reflecting on it all.

  3. 7 Jozephine March 10, 2010 at 10:11 am

    One of the difficulties of this blasted illness is tracking down the triggers when we have a lag because it takes our bodies so long to react. And what trigger? Is it wheat, dairy, hormonal differences, stressful events, a change in the weather, a new intolerance? No wonder they call it irritable bastard syndrome.

    Sorry you’re going through this. Hope it all settles down again soon 🙂

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Push It 11 Sep 2011

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