Aripiprazole - Abilify

Here is why I tried it. Fluge and Mella are now trialing daratumumab, which inhibit something cd38, which apigenin also can do at best. I have tried an awfully lot of supplements though, also more common ones that has helped others but not me, this seems to be my lucky shot.


mariovitali said:
Hi all,

So here are some comments and personal views from the conference :

-Still no effort to investigate ME/CFS cases not originating from viral infections. Not good.

-Very optimistic about the case presented by Oysten Fluge and anti-CD38 therapy. I had the chance to talk to him and show some associations of his work in CD38 with other findings in ME, more specifically purinergic signaling , DHFR,nitric oxide, tetrahydrobiopterin. Interestingly , apigenin (identified by machine learning) is a CD38 inhibitor : https://www.s4me.info/threads/apige...amelioration-of-me-symptoms.7872/#post-140372 . In the end of our talk he said : "send me whatever you have" :)))

Of note : One slide on Fluge's presentation has shown that there was no organ damage found in post mortem ME/CFS patients. I specifically asked him whether they looked at liver tissues and he said that they didn't. I then showed some Fibroscans of ME/CFS patients and asked him if they could test patients with Fibroscans.


-I was very happy to see the work presented by Leonard Jason (DePaul University) : machine learning and network analysis methods being used to try to identify key differentiators of ME/CFS vs HCs (see attached photo).

-Also the work by Nuno Sepuvelda who used data from Carmen Scheibenbogen and then applied machine learning algorithms. Quite possibly there will be a joint effort with Nuno who is very committed and enthusiastic for medical research and the use of mathematics / algorithms to crack ME/CFS. (see attached).

-And last but not least , I was able to speak with Dr Prusty. He is very specific to what he wants (which is good) , told me that one of the proteins he found can be found mainly in hepatocytes -as he knows my persistence with everything liver related- and told me to send him anything that I could share with him (which was nice).

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I was really worried about starting LD Abilify after reading some patients reporting negative reactions to it. Was it worth the risk? Well my family guilt tripped me into it and just like LDN... just... absolutely nothing. Can`t feel any difference at all. Kinda funny given how worried I was, and how much I have been seeing it mentioned on the subreddit.

Looking and comparing with the Rituxi trials, I think it is safe to assume that a lot of the ´´improvements`` are just random fluctuations, placebo and the other usual suspects. Of course there might be a small subset who experience a genuine improvement, as reported in this thread. We just don`t know.
 
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Don’t know why I didn’t post this sooner, to show the LDA sceptics that for us temp responders the effects are real. From my phone health app

IMG_3909.pngIMG_3910.png

My housebound baseline is in the few hundreds and you can see for months that’s how I am between LDA cycles. During LDA it shoots up to 7-8k and more average per day! Then the effects slowly decrease until I stop taking it and pause again for months until the next time. Can’t make this shit up it’s doing something
 
leokitten said:
Don’t know why I didn’t post this sooner, to show the LDA sceptics that for us temp responders the effects are real.
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I don't know whether I'm counted as a skeptic. I would never disbelieve any pwME's report of their experience, and I'm glad it's periodically still working for you. My concern is, and always has been, that nobody seems to be doing a clinical trial to find out whether this is an unusual or common effect for pwME.
 
If reasonably predictable even a short term effect may have a very real practical value.

I have just had one of my godchildren visiting for a week. He really understands my limitations and did all the cooking while he was here, but I am still needing time to recover and would have loved to do have been able do more while he was here.
 
leokitten said:
My housebound baseline is in the few hundreds and you can see for months that’s how I am between LDA cycles. During LDA it shoots up to 7-8k and more average per day! Then the effects slowly decrease until I stop taking it and pause again for months until the next time. Can’t make this shit up it’s doing something
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Without going through 533 posts in this thread: up to what dosage do you go?
– and how quick ?

In general I’m interested up to what level responders go.
The FB-page and the paper I have seen takes 2 mg as the golden standard.

But I have strong doubts that this is valid specially a) if you read through anecdotes + b) the general different response of (ME-)patients to medication.

I think I’ve read 2 accounts of patients that improved a lot on full dose Abilify - which seems to have a complete different outcome on dopamine.

I think we just know too little about this drug and dopamine + other receptors with ME-patients to know this for sure.
 
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