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.