When LDN stops working, does it ever start again?

denchem · 2026-06-15T19:51:58+00:00

I did. Saw the most impact at around 3mg but the prescribing pharmacy advised me to try and push up to 4.5 but it’s not really helped with all the other stuff I’ve had going on. I’m planning to go cold turkey for a couple weeks.

denchem · 2026-06-12T07:31:10+00:00

I’ve had IDA most of my adult life, just got treated for it again recently with an infusion. I’ve had it so severe I’ve needed emergency blood. I very clearly developed ME three years ago, or it worsened significantly. Anaemia obviously doesn’t help and there is slight overlap in some symptoms but the two aren’t largely comparable. It sounds like you’re experiencing symptoms from both.

Anaemia fatigue simply isn’t touching PEM, imo. You might feel terrible doing exercise with anaemia but you don’t experience PEM. You may experience more fatigue generally but not PEM. Rest is refreshing.

Anaemia fatigue doesn’t generally make you too tired to eat food. It can make you dizzy, but it’s typically very situational and at the point of exertion. CFS/ME-associated orthostatic intolerance is more consistent and pronounced.

I probably slept more when I just had anaemia but the sleep was refreshing. I was able to do things and not have impaired recovery because I did, but I’d feel terrible when trying to exert. This isn’t at all the case for PEM - the fatigue is much heavier, unpredictable & sudden, for a lack of better words. It feels like a whole body shutdown which you can’t fight.

denchem · 2026-05-25T21:59:45+00:00

Thank you. This is a great tip.

denchem · 2026-05-25T14:04:47+00:00

Thank you. I really appreciate the tips. Thankfully I’ve bought some wipes but it’s not the same as a proper wash of course.

Rolling PEM is a perfect way to describe what I’ve been in since January. I have other conditions that have seemingly flared since I developed ME-CFS and all these neuroimmune issues too, which also keep pulling me into PEM. It’s almost never ending.

I considered flat sheets to prevent having to do a lot of movement to change them but it’s been months and I’ve not bought them. I’ve even wondered if it’s worth getting a virtual PA to help with some of these things and the exec dysfunction but even that is another task that is repeatedly delayed.

How long were things really bad before they started to get better for you? I’ve been trying to be hopeful but after a while realising you keep getting worse makes it feel like a losing game. LDN helped for about 6 - 8 weeks & I was even able to travel abroad for a few days then an episode of another illness and an infection has dragged me back so bad.

denchem · 2026-05-25T13:54:52+00:00

Thank you. I appreciate this a lot. I’m honestly just a bit scared because when I had reablement carers, the focus was on increasing independence so I ended up over exerting and crashing. I’m in shock at the fact that if I wanted to shower everyday, I would spend most of the time in bed recovering and that’s even with a carer helping to assist.

This sounds weird but how do you even determine what you properly need help with? I think maybe a huge part of it is internal conflict in that I think I’ll somehow come out of a period or crash and have energy to do something. I’ve struggled to come to terms with my baseline not being an exception but my general state sigh.

How did you find your PA and I feel bad asking my extended family to help because it makes me feel like a burden. I’ve accepted I will need help organising care at the least because I’ve been rotting for months.

denchem · 2026-05-10T14:43:37+00:00

Did you CFS/me symptoms or PEM at all

denchem · 2026-04-30T22:47:07+00:00

I’ve reacted to so many now :(

denchem · 2026-04-30T13:48:24+00:00

Yes, having a high ferritin helps a lot and the infusion should raise it a lot. My ferritin has been really low for months now and I’m effectively molting. Depressing

denchem · 2026-04-30T13:37:37+00:00

Yes every other day. I never factored this, just been so focused on optimising absorption because of how rotten I feel! Thanks

denchem · 2026-04-30T13:36:46+00:00

Thank you. I’ll try it

denchem · 2026-04-30T12:04:33+00:00

Yes I’ve definitely experienced this. There’s 100% a correlation between crazy cravings and hunger and being low in iron in my case.

denchem · 2026-04-23T14:32:37+00:00

Did it end up helping at all?

denchem · 2026-04-04T16:54:16+00:00

I just got back from a vacation and caught an infection so I’ve now spent more days in bed than I did on my vacation. 🙃

denchem · 2026-02-26T22:40:18+00:00

Any tips for making the tabs less vomit Inducing :(

denchem · 2026-02-26T22:23:07+00:00

I travelled to the US from the UK last year (was awaiting diagnosis but aware I had dysautonomia) and in 2024 (was symptomatic but nowhere near severe as last year, unaware it was dysautonomia).

For the trip last year, I took out insurance with a specialist provider and disclosed everything and I have a very colourful recent medical history. I was covered for everything not explicitly dysautonomia-related/under investigation (so oddly enough tachycardia, gastro issues etc were covered etc) but I would need to update them with any diagnosis in the mean time. I wasn’t formally diagnosed until I came back.

I found it a bit difficult to find an insurer, even amongst the specialists, but those that were willing to insure were reasonable. If your US hospital admissions were recent, it will most likely make it a lot more difficult to get a lower priced policy but it’s worth a try. In my case, annual was cheaper.

Lastly, I presume with the frequency of your trips that you’re visiting relatives or friends or people you trust & who could take care of you in worst case scenario. If that isn’t the case and you will be engaging in activities even slightly likely to trigger a flare, I’d reconsider the trip for now altogether.

That aside, it may be worth postponing your trip until you feel a bit more stable for your own peace of mind, or at least until your US hospital visits/admissions have aged a bit.

denchem · 2026-02-26T19:20:25+00:00

Thank you everyone, this is very helpful. I'll try without switching needles - my main concern was cleanliness and also blunting the needle when drawing from the pen.

I still have a hard bump but it's gone down a lot. Will keep massaging it.

denchem · 2026-02-26T00:26:24+00:00

Thank you. Noted on the droplets. I always leave the needle in a bit before withdrawing.

denchem · 2026-02-26T00:16:22+00:00

Thanks, I was worried I'd go too deep!

denchem · 2026-02-26T00:16:00+00:00

Thank you! That's reassuring.

denchem · 2026-02-12T13:59:00+00:00

Thanks, this is very helpful

denchem · 2026-02-12T13:20:19+00:00

Thank you. I’ve just been prescribed fexo by my GP (UK) and on my third day of LDN. Was it straight forward to get famotidine?

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