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To add to this, I would say even though I still have ME insomnia and some sleep disturbances, before Abilify after a bad night I would wake up feeling like I was hit by an 18 wheeler, poisoned, and shattered with PEM - day totally ruined and hoping just to go back to sleep to recover. But now...

I also have very significant ME related insomnia and sleep issues. Abilify has helped with the sleep disturbances but not with getting me tired at night and able to fall asleep. I also take and have to alternate through a few different sleep meds. I wish Abilify helped with that but alas not...

Hi everyone - I’m at the 1 month mark since I went to Abilify 0.5 mg. Things are going really great, I feel even better than when I posted my previous update. I stay housebound on purpose to keep my physical and mental exertion in check, as well as not trying to do that much in my apartment...

I don't think anyone truly knows if there is any synergistic effect or not, without research pretty much impossible to know. Only thing known is celecoxib does somewhat increase aripiprazole plasma concentration due to moderate liver interaction. I'm taking etoricoxib instead of celecoxib as...

Ditto to what @benji said. My ME doc (Levine) knows the Stanford protocol and paper well and we following the dose ranges described there. That being said I'm still on 0.5 mg now for 4 weeks (and 0.25 mg for a while before that). Could go higher and ME doc would be supportive, but don't see...

To me this definition doesn’t make a lot of sense. So effectively any treatment that significantly reduces ME symptoms would be stimulating, because the symptoms of the disease itself and their severity force you to be less physically and mentally active, less functional, and therefore any...

How can I watch the entire episode from the US?

Glad you are feeling a bit better @jonathan_h, at least to have a respite. Reading your description I feel it’s very much like the changes I’ve been having, as if the illness calmed down significantly across the board (even though it’s still very much there). I sincerely think there is...

I found an Abilify testimonial thread on PR dating back to 2012, and one member posted on the thread with her testimonial in 2017 where she experienced the same tolerance after ~4 months that people have been reporting more recently. She described that she was able to cycle after developing...

Another reason I wanted to trial Abilify is because one of the few ways currently to get a clue about what subset I am, what pathophysiology I might have, is to trial treatments to see what works. I know it’s not foolproof in any way but there aren’t many other ways to find out what’s going on...

I would also put a caveat on anything found in research papers or on the web regarding antipsychotics, the issues generally described are for people taking 20x the dosage we are taking. Based on the anecdotal reports so far, almost all the pwME who trialed Abilify have not experienced any...

I am trying to figure out and stay at the lowest dose that works in order to minimize chance of potential side effects and to not get any possible “fake” energy effects the higher you go. Though I think this is also individual specific as I read others feeling stimulated at 0.5 mg and I don’t...

I’m just happy to take what I can get for now. Being bedridden is hell I desperately needed a break from it.

Currently to me these are the hypotheses for Abilify efficacy in ME: 1. Positively affects neurotransmitter or signaling dysfunction via dopamine-serotonin system stabilization and functional selectivity 2. CNS anti-inflammatory 3. Positively affects cellular metabolism dysfunction 4...

A good summary document on brilaroxazine from an investment research firm looking at Reviva. https://s1.q4cdn.com/460208960/files/News/2021/Zacks_SCR_Research_01132021_RVPH_Vandermosten.pdf You can see the important improvements compared to aripiprazole, eg target receptor binding and...

https://en.m.wikipedia.org/wiki/Brilaroxazine It’s almost identical molecular structure to aripiprazole, with only a single carbon change in the quinolinone ring system to oxygen making it a benzoxazinone ring system. The resulting change also makes it closely related to cariprazine...

For those of you who also read PR, we’ve also discussed potential alternative DSS drugs and add-ons there as there are many people who responded very positively to Abilify but after ~4 months or so it stops working. In fact, I’d searched a little while back and found there are testimonials on...

I personally take from the referenced paper that this is some additional evidence documenting Abilify’s potential anti-inflammatory molecular mechanisms in the CNS, not necessarily finding new drug targets. There is still so much to learn about the mechanisms of action of dopamine-serotonin...

Yes, it doesn’t feel stimulating at all. Symptoms have reduced and I just feel better. But I’m not restless, mind not racing, not feeling pushed to move around or do things. Well I was bedridden lying down or sleeping all but 1-2 hours a day where I could sit up or sometimes make it to the...

Your time to response (7-10 days) is more typical from what I read. People report that benefits continue to increase for a while after that until stabilizing. Did it make you feel worse and irritable the first week before everything turned around? A lot of people reported that but I didn’t get...