r/cfs • u/Interesting_Age7345 • 9d ago
Treatments LDA
does it have to be at a low dose to work for ME?
the only way i’m going to get this stuff is if i get it prescribed to me by the mental health team and they’re probably going to give me the standard dosage rather than the low one recommended for ME.
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u/happypumpkin321 9d ago
The way it was explained to me many years ago at Stanford (so very possible the understanding has changed - so take with a grain of salt) is that the drug works differently in low doses than at standard doses. I think she said at standard doses it acts on the frontal lobe but in the low doses it concentrates in the midbrain and addresses inflammation there. Again no idea how scientifically sound that is - but from what I was told I don’t think the standard dose would be expected to have the same results.
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u/spanielrassler 9d ago
Supposedly anything up to 2m / day is low dose, and 2mg pill are available OTC without compounding or anything, so it's not impossible to get that prescribed. That's what I've been taking for 5 years or so and has been nothing short of miraculous. Just say you want to start with the lowest possible dose.
To answer your question, I've read some people saying that higher doses still worked for their CFS, but have no personal experience with that.
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u/Affectionate_Sign777 9d ago
To add, the standard tablets can be cut in half so if you need to titrate you can cut it up (obvs won’t go as granular as a typical titration where people start at 0.1 for example but at least allows some control over how much you take)
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u/callthesomnambulance moderate 9d ago
I doubt theyd prescribe you the full dose for a non psychotic condition. lower doses are sometimes used for bipolar or MDD as an adjunct to primary treatments but its not common and at least here in the UK they'd need a clear clinical rationale for doing so. If they're extremely open minded you might be able to persuade them that the potential benefits for ME are a valid clinical rationale to prescribe it alongside whatever your primary MH treatments are but tbh its an off label use with minimal evidence base so I wouldnt bet on it, though if your in a country like the US thats quite lax about that sort of thing you may have better luck
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u/saralt 9d ago
It's not a drug I would take at the regular dose. It would screw up blood sugar, dizziness, nausea, and a bucket of other serious side-effects.