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Abilify- Stanford Clinic Patients

leokitten

Senior Member
Messages
1,543
Location
U.S.
Concerning if true šŸ˜

Think about it @Martin aka paused||M.E. its actually quite intuitive, your adrenal glands above your kidneys make by far more catecholamines and their metabolites than what might cross the BBB from the brain. All the results are confounded by this! You have no idea what portion are from the adrenals and from brain, and it could be your adrenals.
 

Martin aka paused||M.E.

Senior Member
Messages
2,291
Think about it @Martin aka paused||M.E. its actually quite intuitive, your adrenal glands above your kidneys make by far more catecholamines and their metabolites than what might cross the BBB from the brain. All the results are confounded by this! You have no idea what portion are from the adrenals and from brain, and it could be your adrenals.
It just indicates now that there is sth wrong but not what. Right?
Six years of University, two years of practical training and now I'm still uninformed and waste my money because my GP doesn't know much, there is no specialist and I'm too severe to read any books, articles and so on. Sorry for my post. And thanks for the input.
raises a lot of questions...
 

leokitten

Senior Member
Messages
1,543
Location
U.S.
It just indicates now that there is sth wrong but not what. Right?
Six years of University, two years of practical training and now I'm still uninformed and waste my money because my GP doesn't know much, there is no specialist and I'm too severe to read any books, articles and so on. Sorry for my post. And thanks for the input.
raises a lot of questions...

Remember the general (not always but usual) rule doctors follow: what is the purpose of the test? What actionable information are you going to get from it? Just having an idea if something is wrong isnā€™t enough if you cannot or wonā€™t (if something is possible) do anything about it. For example would this test help you with any disability claim? (which is actionable), nope highly unlikely.

Based on your earlier post I thought to myself, even you donā€™t totally believe the validity of this test, because you arenā€™t changing or doing anything new based on the results you just got. If you truly believed these results correlated to dopamine levels in the brain, I wouldā€™ve expected to hear that you wouldnā€™t be starting Abilify or you would be taking a much higher dose in order to block dopamine.

I believe based on current lack of evidence that the test is flawed wrt to brain function and am glad you arenā€™t changing your plans.
 

Martin aka paused||M.E.

Senior Member
Messages
2,291
Remember the general (not always but usual) rule doctors follow: what is the purpose of the test? What actionable information are you going to get from it? Just having an idea if something is wrong isnā€™t enough if you cannot or wonā€™t (if something is possible) do anything about it. For example would this test help you with any disability claim? (which is actionable), nope highly unlikely.

Based on your earlier post I thought to myself, even you donā€™t totally believe the validity of this test, because you arenā€™t changing or doing anything new based on the results you just got. If you truly believed these results correlated to dopamine levels in the brain, I wouldā€™ve expected to hear that you wouldnā€™t be starting Abilify or you would be taking a much higher dose in order to block dopamine.

I believe based on current lack of evidence that the test is flawed wrt to brain function and am glad you arenā€™t changing your plans.
I won't. I will try it
 

Marylib

Senior Member
Messages
1,155
Remember the general (not always but usual) rule doctors follow: what is the purpose of the test? What actionable information are you going to get from it? .
I'm not a doctor, but this is my general rule as regards to testing in general. If there's no action I can take, I don't pursue it. That being said, I do learn from others on this forum who do have access to various tests and I very much appreciate their sharing what they learn.
 
Messages
58
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So, understanding what could get depleted with a particular substance is important and how it is interacting with multiple pathways, and what cofactors are in all those pathways. I already listed the things that get depleted by Abilify, and heard nothing about anyone testing to see status of them when they reported the drug pooping out.
@Learner1
I'm interested in your thinking about drug effects on metabolites and neurotransmitters. How were you able to have your dopamine levels measured for instance? Do you mean blood levels?
Levels or any organic molecule, inside specific cell types, would be important to know to understand pathophysiology, but these are often very difficult to measure.
Any insight would be appreciated. Thanks much for your posts!
 

Martin aka paused||M.E.

Senior Member
Messages
2,291
@Learner1
I'm interested in your thinking about drug effects on metabolites and neurotransmitters. How were you able to have your dopamine levels measured for instance? Do you mean blood levels?
Levels or any organic molecule, inside specific cell types, would be important to know to understand pathophysiology, but these are often very difficult to measure.
Any insight would be appreciated. Thanks much for your posts!
Read the post by @leokitten from above. Measuring neurotransmitters in the brain is ā€¦ tricky
 

Marylib

Senior Member
Messages
1,155
This thread it so long that I can't possibly read it all, but I can't figure out why Bonilla didn't go the route of a modulated dose of an MAOI, in consultation with a psychiatrist/psycho-pharmacologist. Yes, okay, some said he was going for some anti-inflammatory effect, but everyone is talking about dopamine. For increasing dopamine, there's amphetamine, and then there are MAOI's. Seems to me a much more direct route if you want more dopamine in the system - from what I read. I do know one problem is that MAOI's have somehow gone out of favor in treating intractable depression, thus there is a supply issue, but can someone explain this to me? There's so much literature to draw from on MAOI's.
 

JES

Senior Member
Messages
1,320
I don't think MAOI's will work for most of us. I reckon there was one story here long ago from someone who had improved on an irreversible MAOI, but you'd think there would be more reported if such drugs that were not long ago commonly prescribed would help ME/CFS.

I tried moclobemide, which is a reversible MAOI with less side effects, but it did nothing for my core symptoms. Same story with bupropion, which directly inhibits dopamine reuptake. I could notice some effects from the dopamine modulation as in more motivation and drive to do things, but in a week most of that benefit was gone as well. Effect is a bit similar as with coffee or nicotine, a nice boost, but eventually it wears out.
 
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junkcrap50

Senior Member
Messages
1,330
Has anyone brought up the Abilify tolerance problem in any nootropic communities?

I'm always impressed with their neuroscience knowledge and understsanding. There are a lot of very smart, scientific knowledgeable people in that community who think outside the box and through the mechanisms of how and why certain nootropics work. They are far and beyond more knowlegeable than any psychiatrist and some neuroscientists (b/c neuroscientists are usually too narrowly specialized).

For those more followed Abilify more closely and is more familiar with it's use/experiences in ME/CFS, it might be worth starting a discussion with nootropic users. Might be a puzzle they'd be interested in.

I'm not entirely sure which is the best nootropic community for this - probably a group on Facebook or Discord. Longecity is very good with knowledgeable users, but pretty small and doesn't have not a lot of traffic/discussion. Reddit's /r/nootropics might be worth a try, as I've seen a some high level discussions but it has a lot of amateurs too.
 

Martin aka paused||M.E.

Senior Member
Messages
2,291
Has anyone brought up the Abilify tolerance problem in any nootropic communities?

I'm always impressed with their neuroscience knowledge and understsanding. There are a lot of very smart, scientific knowledgeable people in that community who think outside the box and through the mechanisms of how and why certain nootropics work. They are far and beyond more knowlegeable than any psychiatrist and some neuroscientists (b/c neuroscientists are usually too narrowly specialized).

For those more followed Abilify more closely and is more familiar with it's use/experiences in ME/CFS, it might be worth starting a discussion with nootropic users. Might be a puzzle they'd be interested in.

I'm not entirely sure which is the best nootropic community for this - probably a group on Facebook or Discord. Longecity is very good with knowledgeable users, but pretty small and doesn't have not a lot of traffic/discussion. Reddit's /r/nootropics might be worth a try, as I've seen a some high level discussions but it has a lot of amateurs too.
Josh is a nootropic. He has some ideas we tried following the metabolic pathways but it didnā€™t work out. But the idea is good though.
What I think is thatā€™s not a problem with an easy solution. I think we have to deal with desensitised receptors and if you look at the targets of Abilifyā€¦ could be anything!
8144D30D-B504-4269-88D7-E32A6D9DDE6D.png
 

lenora

Senior Member
Messages
4,915
I'll address the MAO's (as they were called then) from a family member's point of view.

I've made no secret of the fact that many members, my mother included, had bipolar illness. In the early days, MAO's were it. But we constantly had to watch everything she ate....cheese being a favorite and one of its worst enemies. Suicide watch was always on, no matter how carefully the meds were guarded and she ended up back in the hospital in even worse shape than when she left.

Later a brother and a sister developed the same illness, later another sister. By then, things had changed considerably.

I had left home by then, but my youngest brothers and sisters would call once/wk. on average that she had locked herself in the bathroom and was committing suicide. No matter how many times I told them, they wouldn't call the police. I don't know why I just didn't do it myself....afraid of Social Services removing them, I guess. She was a good mother in between attacks and was dearly loved.

SSRI's opened up a whole new world, that and ECT kept her under rather good control. No more of the nonsense the younger ones had to endure, thankfully. No, there were no relatives, my father died at age 40 and that was possibly the reason for her descent anyway. Her family lived in England, so I was it.

So please think twice about the resurgence of MAO's. Or, if you want them, have someone else control your pillbox and keep them b/c many people accidentally overdosed and died while on them. I do believe there is s place for the review of old medications, so I'm not against that per se. But the dangers are real and a person living alone should not have access to them....just too dangerous. Yours, Lenora.
 

Hipsman

Senior Member
Messages
542
Location
Ukraine
Has anyone had dermatological side-effects from Abilify? These are fairly common apparently:
Oral Formulations:

Common (1% to 10%): Acneiform rash, allergic contact rash, drug eruption rash, erythematous rash, exfoliative rash, exfoliative seborrheic dermatitis, generalized rash, hyperhidrosis, macular rash, maculopapular rash, neurodermatitis, papular rash, rash
(Source)
I have a sort of mild rash on my hands and feet, a few small spots where my skin hardens and peals off. I'm on 1mg daily.

I'm posting this because I want to know if others get this too, or maybe something else I take might cause this. Haven't really noticed any other side-effects.
 

mitoMAN

Senior Member
Messages
625
Location
Germany/Austria
Anyone got depressed on Abilify?
I have been taking it since January 2021 and noticed an effect since I got to 1mg (tried up to 3mg once it lost some of its effect).
I have since returned to 1.25mg for 4 weeks but still feel that I am rather depressed even tho it gives me some more energy...
I dont get things done due to being depressed.