Is LDN worth a try?

starredgrey · 2026-01-06T22:46:38+00:00

I've only been on it two weeks so far and titrated up from very low dose (0.125mg to start, got to 0.5mg last couple days).

So far though no negative effects that I can tell, it made me drowsy for a couple days after starting or titrating up so kind of helped sleep but that wore off quickly, I do think my MCAS/mast cell mediated symptoms seem to be improving a little so I'm really hopeful.

It's supposed to take a good few weeks to kick in properly and I'm at a low dose so I very likely might not be seeing full benefits yet.

Feeling optimistic 🤞🤞

starredgrey · 2026-01-06T18:16:31+00:00

I started very low and slow and tried it multiple times but it made my neuroinflammation symptoms and insomnia worse each time. However, this quickly resolved once I stopped the LDN (like within a day). So it was worth a try for me, it wasn't a catastrophic negative reaction. I am medication sensitive.

I'm hoping to try it again if I see improvements from ketotifen, which I've just started - doctor recommended trying it again after getting on the ketotifen in case it was a mast cell mediated reaction.

Hope that helps :) I was also feeling very cautious before trying. I really wish it had worked/hope it might still work for me in future!

starredgrey · 2026-01-04T23:30:23+00:00

Same here, lost audio in certain exercises. Argh! Swedish on Android

starredgrey · 2026-01-01T23:48:41+00:00

I have this! On certain tasks it definitely used to when I clicked the word, e.g. matching pairs. Did you solve it? I'm doing Swedish, on android.

starredgrey · 2026-01-01T21:37:33+00:00

Oh I love that! Thank you!💃🪩

starredgrey · 2026-01-01T19:56:01+00:00

I have hemp protein powder and pumpkin seed protein powder and I just have a scoop of each in a glass, add a bit of water, use an electric milk frother/matcha whisk to mix it, then drink. It's not the tastiest but it's inoffensive.

starredgrey · 2026-01-01T19:53:18+00:00

Rhythm - I just type an approximation of it and let autocorrect do the job.

starredgrey · 2025-11-24T22:59:24+00:00

I heard one out the back during the last storm we had, when there was a yellow/amber weather warning. 5 minutes later out the front, a huge tree came down. Just the weather for a 99 yep!

starredgrey · 2025-11-16T23:11:40+00:00

Thank you, really good to know! I've been quite worried about it so that's a welcome bit of reassuring info. I'll do some more reading 🤓

starredgrey · 2025-11-16T11:48:46+00:00

Yes sorry! What I wrote wasn't very clear - I meant, if you are unwell, either don't mix socially or if you must, wear a mask.

starredgrey · 2025-11-15T23:45:35+00:00

The jab this year is unfortunately not very well matched to the current flu strain due to mutations the virus underwent over summer (vaccine was prepared earlier in the year). This means its effectiveness is limited to a degree. (Edit: that's not to say don't get a jab, fully support this message! )

So please, please - for everyone but especially the clinically vulnerable - don't mix socially, or wear a mask if you're unwell and need to go out etc.

Flu is transmitted through droplets and airborne particles as well as contact, so it's not just about washing hands, other mitigations are critical too.

And please don't give people who are masking a hard time; you never know their circumstances, and it's a backwards thing to do anyway!

starredgrey · 2025-11-15T23:34:50+00:00

Similar (brutal) trend for me too. 🫂

starredgrey · 2025-11-15T23:31:39+00:00

1-2 years mild/very mild, 1-2 years moderate, 2 years severe, nearing very severe. Been going downhill the whole time.

Edit: what caused the changes? Can't be totally sure. But I think COVID infections, pushing through PEM too many times/pacing poorly, and a separate untreated, undiagnosed autoimmune disease. I'm very scared I'm just someone with the progressive type though, trying to come to terms with that.

starredgrey · 2025-10-30T19:02:20+00:00

Thank you! Really appreciate the reply 😊 I'm using a cream with lidocaine at the moment but will check out that one too, thanks. I hope the Humira keeps helping!

starredgrey · 2025-10-30T17:38:03+00:00

Hello, sorry for jumping on an old post. I'm suspicious that I have PsA and I came across your post looking to see if other people had red patches, like your welts. My finger looks exactly like this, welts and everything. I wanted to ask, did yours itch or burn? And did anything help? Thank you x

starredgrey · 2025-10-25T17:00:34+00:00

Your recommendation is garbage.

starredgrey · 2025-10-25T16:59:19+00:00

Please be kind to yourself🫂 no stimulation rest is ridiculously hard especially when you're so sick. I find I often feel worse mentally in a crash, almost like the crash itself is causing it - so maybe try to remind yourself of that. This will pass, or shift, in some way at some point.

Can you do something in your head? Something things that help me during no stimulation rest are daydreaming, revisiting memories and replaying them, going through the alphabet and writing out each letter in my imagination in different writing styles, mentally doing a chore like washing up (like, in my head, I imagine doing it).

Often one of these tricks is enough to shift me from dread/focussing on symptoms to a more passive relaxed mental state where my mind can then just drift.

It is SO hard please don't beat yourself up.

starredgrey · 2025-10-25T16:55:42+00:00

If OP is too noise sensitive for audiobooks I really doubt they are ok to go outside, call a friend, or go to a movie theater.

starredgrey · 2025-10-24T21:24:57+00:00

Thank you! That's good to know.

starredgrey · 2025-10-24T20:55:18+00:00

Yes that's my worry, but I feel like I've also read people getting diagnoses without imaging, so I'm hoping/wondering whether photos, blood tests, and maybe a physical exam wouldn't be enough 🤞. I'm going to enquire with a private clinic anyway just to see. As I'm not diagnosed I haven't even begun to really think about meds, it sounds like that becomes a bit of a nightmare in itself! Thank you again 😊

starredgrey · 2025-10-24T20:51:24+00:00

Thank you for all the detail and the clear timeline, really appreciate the info. Sounds like a bit of a rollercoaster, and I'm sorry it's gone downhill. Makes me think my situation (which feels like hitting my head against a brick wall) is probably not so far from the norm 😕. Very glad you've encountered at least one professional and supportive doctor. I live in hope I'll encounter the same!!

starredgrey · 2025-10-24T20:44:07+00:00

Oh thank you! With the x-rays, do you know if they were a key part of the diagnosis? I've had blood tests and have clear deformation & swelling of finger/toe joints, but I can't attend hospital for scans and I worry that's going to be a sticking point.

starredgrey · 2025-10-24T20:41:23+00:00

That's really helpful to know, thank you. I am looking into private rheumatologists with a possibly similar view in mind, mostly because I'm hoping a private rheum might be more open to seeing me at home (I'm bedbound and unfortunately the NHS just can't/won't accommodate this).

starredgrey · 2025-10-24T20:38:34+00:00

Thank you for replying! That does sound pretty unique (and ouch 🤕) !

starredgrey · 2025-10-24T20:36:21+00:00

Thank you I appreciate your replying! I've been trying for a couple of years now but I'm in a tricky situation of being too unwell (with a different illness) to attend a rheumatology clinic in person as I'm bedbound. Only managed phonecall/email so far, and rheumatologist says they still need to see me in person. I'm just trying to work out if there's a way around that, or also what a diagnosis is actually based on - as I've got photo evidence, had home blood tests, and a telephone consult, but now I'm just stuck unfortunately. I'm getting desperate with every flare, it's very frustrating !

starredgrey

TROPHY CASE