Abilify- Stanford Clinic Patients

[hmnr asg]

I think we need a low dose selective presynaptic dopamine agonist (ideally with a short half-life), to achieve a steady state of increased synaptic dopamine, the same principle as in low dose naltrexone really. Antagonism of presynaptic receptor will eventually lead to up-regulation and decreased dopamine output.

What about 3PPP ?
https://en.wikipedia.org/wiki/3-PPP

 

[S-VV]

What about 3PPP ?
https://en.wikipedia.org/wiki/3-PPP

(–)-3-PPP: Presynaptic d2 agonism and postsynaptic antagonist. The ideal compound for low dose triggered up regulation. If it also has a short half-life, its a hit. Then again, its investigational, so no reliable sources...

 

[S-VV]

Thinking of taking an dopamine agonist like Pramipexole... helped at least one patient here

That could help short-term, but I believe that it may lead to tolerance long term.

 

[Martin aka paused||M.E.]

That could help short-term, but I believe that it may lead to tolerance long term.

My plan is to rotate Abilify and Pramipexole

 

[leokitten]

Thinking of taking an dopamine agonist like Pramipexole... helped at least one patient here

My only concern with dopamine agonists is I’m not a fan of taking any drug for ME that requires months or more of slow tapering to quit in order to reduce the chance of heinous withdrawal effects. That would be hell on top of everything with ME I couldn’t deal, and having ME things can happen where you have to stop taking a med quickly.

 

[Martin aka paused||M.E.]

My only concern with dopamine agonists is I’m not a fan of taking any drug for ME that requires months or more of slow tapering to quit in order to reduce the chance of heinous withdrawal effects. That would be hell on top of everything with ME I couldn’t deal, and having ME things can happen where you have to stop taking a med quickly.

Any better idea? Apart from pacing?

 

[leokitten]

Any better idea? Apart from pacing?

The only other treatment that has given some people significant improvements like Abilify are low-carb diets. It worked in an astounding way for me for a few months but I overexerted and crashed too much and then benefits slowly became less and less.

A few supplements have been shown to help a little bit with PEM such as very high dose CoQ10, etc, but supplements only do a little if they work at all. Sorry Martin unfortunately this is sadly the problem. There isn’t much of anything that really works broadly enough across most symptoms to get some of our old lives back. I am in bed or housebound all day every day and I’ve come to terms with that after years of trying to fight it with countless treatments and losing.

 

[Martin aka paused||M.E.]

I'm not new to this illness my dear. I have tried every diet, supplement and so on. I’m ill since 2013 ... the only thing that keeps me alive is my job, I don’t have anything else anymore that brings me joy.
Abilify was great until it stopped working. So I won’t give up finding sth similar

 

[leokitten]

My plan is to rotate Abilify and Pramipexole

If Abilify even works again after a washout of 1-2 months. Hopefully it’s not going to be the same as with some other treatments where it never works the same again.

 

[leokitten]

I'm not new to this illness my dear. I have tried every diet, supplement and so on. I’m ill since 2013 ... the only thing that keeps me alive is my job, I don’t have anything else anymore that brings me joy.
Abilify was great until it stopped working. So I won’t give up finding sth similar

I know Martin, sorry I didn’t imply you haven’t also been through it, I was just answering your question. There currently isn’t anything else that works like Abilify, and there are many other people searching and trying stuff. Right now and maybe for a while there won’t be anything.

 

[Martin aka paused||M.E.]

I know Martin, sorry I didn’t imply you haven’t also been through it, I was just answering your question. There currently isn’t anything else that works like Abilify, and there are many other people searching and trying stuff. Right now and maybe for a while there won’t be anything.

We will see ... if you’re right I’m lost completely!

 

[hmnr asg]

We will see ... if you’re right I’m lost completely!

I am also going off my abilify and taking a break and restarting again at a lower dose. My honeymoon with abilify (the first 2 months) were the best two months in a long time.

 

[Martin aka paused||M.E.]

I am also going off my abilify and taking a break and restarting again at a lower dose. My honeymoon with abilify (the first 2 months) were the best two months in a long time.

The good thing is I read about a woman on health rising who does it and it worked out for her

 

[hmnr asg]

The good thing is I read about a woman on health rising who does it and it worked out for her

Thats good to know! how fast does she taper off? im on 2 and planning to be off in 1 week (3 days 1mg, 3 days 0.5 mg). Its going to be rough i bet (getting on was hard too).

 

[S-VV]

I wonder if Low Dose Haloperidol may be able to be as effective, without tolerance:

Parkinson's Disease: Low-Dose Haloperidol Increases Dopamine Receptor Sensitivity and Clinical Response

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4258318/

 

[hmnr asg]

im in exactly the same boat as @Martin aka paused||M.E. , my job is my life and I have been sick since 2010 and have tried EVERYTHING !
If I lose my job I also see no point in my existence. So I will keep trying things and searching until I find a treatment.

 

[leokitten]

We will see ... if you’re right I’m lost completely!

In the last 10 years (at least), I believe there have been only three treatments that were above background noise and anecdotally significantly improved most or all symptoms, for at least a decent period of time, or resulted in remission in a subset of pwME: antivirals, low-carb, abilify.

I might not be remembering something else but I believe that’s it. Supplements maybe helped with a couple symptoms but I’ve never seen supplements produce improvement across all symptoms or a remission in more than a handful of at all.

I know there’s been ampligen and rituximab too but these are not accessible to most $$$.

So it tends to be that treatments worth trying that are accessible don’t get discovered often.

 

[hmnr asg]

In the last 10 years (at least), I believe there have been only three treatments that were above background noise and anecdotally significantly improved most or all symptoms, for at least a decent period of time, or resulted in remission in a subset of pwME: antivirals, low-carb, abilify.

I might not be remembering something else but I believe that’s it. Supplements maybe helped with a couple symptoms but I’ve never seen supplements produce improvement across all symptoms or a remission in more than a handful of at all.

I know there’s been ampligen and rituximab too but these are not accessible to most $$$.

So it tends to be that treatments worth trying that are accessible don’t get discovered often.

I tried green smoothies for a few days and it worked wonders for me. But I just couldnt stomach it. I am trying to get back these days.

 

[leokitten]

I tried green smoothies for a few days and it worked wonders for me. But I just couldnt stomach it. I am trying to get back these days.

Sarcasm? If not I wrote “decent period of time”. There have been countless individual reports of pretty much everything causing big improvements for a few days to weeks. But to me these are all background noise because none of them were ever reproducible.

 

[Martin aka paused||M.E.]

Sarcasm? If not I wrote “decent period of time”. There have been countless individual reports of pretty much everything causing big improvements for a few days to weeks. But to me these are all background noise because none of them were ever reproducible.

I will try dopamine agonists despite your negativity... if you’re right there is hardly no reason to exist