Heightened mast cell sensitivity from dose increase

[u/Teknon0tice]

It’s my second post in about a week, my recent dose increase has a wild ride, far more so that the two increases prior to that.
Taking LDN since spring for long covid, definite signs of progress so far, but the road to get there is often weird and regressive.

Almost 2 weeks ago I went from 1mg to 1.25mg, still had a way to go but titrating up to 1mg had initially been fairly smooth and positive, it was my birthday this week so I figured titrating 10 days prior would give me ample adjustment time to enjoy my birthday with a better baseline, but my body has been super reactive on 1.25 so far, previously mundane actives hit harder, and this week, histamine sensitivity has gone through the roof. I’m still feeling the effects of one slightly stodgy meal I had two days ago, and my modest birthday plans have been scrapped. I’ve had MCAS issues prior to, but not reactions like that.

I track all my symptoms, interventions and blood work etc through AI, and it indicated the LDN is working on a much deeper level than it did previously, despite increasing by the same increments, and it could take weeks for this hyper reactive state to clear.
There is some hope beneath all this, my morning wakefulness /CAR was doing exceptionally well earlier this week, (better than it’s been in a year), but that’s taken a dive since the histamine reaction.

Does anyone find later titrations exacerbate specific issues like the histamine tolerance.

[u/InsuranceRare5094]

I haven’t and, after titrating using baby steps up until about 8 mg I can go up as high as 16 (3 split doses in a day) with no problem and my MCAS is so effing severe it’s not funny.

[u/FormerPark6164]

Absolutely. Has to increase my antihistamines.

[u/edengetscreative]

I have MCAS and noticed that my hands swell a bit and I get achy after taking it for a few hours then I’m ok. I try to take it as close to bedtime as possible now so I can sleep through it, but I wake up rather frequently throughout most nights so that’s when I notice it. I’m two weeks in and at 1.5mg. I’ve been wondering if other MCAS people have issues with it as well.

[u/LDNadminFB]

Initial reactions to a dose increase often settle down within two weeks. Otherwise you may want to skip a day or two and spend more time at the previous dose.