Abilify- Stanford Clinic Patients

choochoo

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I just read today's HealthRising post about Abilify, Whitney Dafoe's success with it (hooray, Whitney!) and the comments of others who Stanford's Dr. Bonilla put on Abilify. Seems it poops out after awhile.

What Abilify apparently does is increase dopamine.

This may seem like a tangent, but oxidative and nitrosative stress are well known features of ME/CFS, creating damaging peroxynitrites, which impair complex I of mitochondria and damage mito membranes. Martin Pall's protocol uses folate, B12, C, and BH4 (tetrahydrobiopterin) to reduce peroxynitrite production.

After taking plenty of folate, C and B12, which helped to a degree, my doctor added Kuvan, which increased my energy by 30%. It had additional effects - increasing my chronically low dopamine to high normal and increasing nitric oxide which has lowered my somewhat high blood pressure.

It is worth looking into the mechanisms if why things work to understand why they might stop working. Wonder if Abilify us running through some biochemical too quickly, depleting patients of something needed... It seems to deplete B2, B6, folate, B12, melatonin, and CoQ10...

Learner

Where is it reported that Abilify loses its effectiveness when used to treat ME please?
 

Treeman

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Where is it reported that Abilify loses its effectiveness when used to treat ME please?

In the comments below the article about Whitney Defoe (https://www.healthrising.org/blog/2...MLnQIA8qsyT4sLeboxDQR6VCWBFZ1dXvLBRZvyWndMT2Y ) as one example Mark Martinho said, "As someone that goes to Stanford to deal with CFS (I think CFS… these things never seem 100% certain) I had fantastic results with micro doses of Abilify BUT after about 7 months it ceased to have any impact on me. The exhaustion, brain fog, and headaches all came back."

Also, claire sheehan said, "Our son, Kevin Handler, also a patient of Dr. Bonilla has been sick for 7 years, too. Last year he started taking Abilify and one year later, he has moved to Galway, Ireland bought a house, begun studying Irish and producing and making music and fallen in love twice!! He was sick of the ceiling, too! I hope you get up and back to your life as you have dreamt it soon!!"
 
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andyguitar

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I had fantastic results with micro doses of Abilify BUT after about 7 months it ceased to have any impact on me. The exhaustion, brain fog, and headaches all came back."
Well if it worked for 7 months it's not going to be down to placebo response. Also he says that after the Ablify stopped working he went on to Celebrex which worked for about 8 months but is now not so effective. Cant say I've come across any drug that has been as effective on those who are very ill.
 
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JES

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It's very common for drugs/supplements to stop working with ME/CFS, that's just the way it is. Unless you are treating the root cause (which I don't think Abilify does) there's always a chance of relapse, but it doesn't mean it necessarily will happen. In any case, improvements like these are remarkable from severe patients and hopefully it will help researchers to get one step closer in understanding this disease.
 

Learner1

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It's very common for drugs/supplements to stop working with ME/CFS, that's just the way it is.
While it may be common, it's not "just the way it is." These substances work in biochemical pathways, along with other biochemical pathways, and if they make a pathway work faster (or start working) the co-factors which may have been built up, get used faster, and then can get depleted. When you run out of a cofactor, that's when the substance seems to stop working.

Additionally, these pathways do not work in isolation. They interact with one or more other pathways, so it's not just one pathway running out of ingredients, it can extend to several others as well.

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.
 

Martin aka paused||M.E.

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While it may be common, it's not "just the way it is." These substances work in biochemical pathways, along with other biochemical pathways, and if they make a pathway work faster (or start working) the co-factors which may have been built up, get used faster, and then can get depleted. When you run out of a cofactor, that's when the substance seems to stop working.

Additionally, these pathways do not work in isolation. They interact with one or more other pathways, so it's not just one pathway running out of ingredients, it can extend to several others as well.

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.
I will test it! Thank you very much for this input
 

choochoo

Senior Member
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130
For me it works better every week


Whitney ( or Martin ) does not say that or hint of the effectiveness of Abilify wearing off ( at least on PR ). This is speculation. In fact, its on the contrary. He specifically indicates his continual slow improvement ( as does Martin ).

Furthermore, those who write about losing affectivness may have other diagnosisis such as Hashimoto's. So to be clear, we just don't know at this stage whether a tolerance threshold is quickly reached with Abilify.

Also the half life is long at up to 3 days. This may mean that the patient may be able to prolong the drug's efficacy by dosing every other day.

I think it is important not to dash the hopes of people who this drug may be of some benefit.
 
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choochoo

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And the fact of him not yet having tried Valcyte or possibly Mestinon, and Minocyline means there just may be more possible improvments waiting in the locker.
 
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mitoMAN

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Are there any studies linking Abilify to anti-viral activity?
I have been taking Quetiapin, another atypical psychotics (same class as Abilify) and it seems to have the same anti inflammatory properties at least according to speculative studies. Couldnt find any Anti Viral relation tho.

I have been taking it since 2018 with little benefit on fatigue however.
 

choochoo

Senior Member
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130
Are there any studies linking Abilify to anti-viral activity?
I have been taking Quetiapin, another atypical psychotics (same class as Abilify) and it seems to have the same anti inflammatory properties at least according to speculative studies. Couldnt find any Anti Viral relation tho.

I have been taking it since 2018 with little benefit on fatigue however.


How are you on Quetiapin may I ask?
 

mitoMAN

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How are you on Quetiapin may I ask?
I was given it in Psychiatry when they misdiagnosed heavy depression (unhealable with medications for 10 years) instead of ME/CFS.
I already had ME diagnosis but noone took that seriously so did I sadly...

Since then I lowered the dose drastically and take 50-100mg for sleeping aid.
I have ADD very severely and it helps me fall asleep without lying in bed 3 hours with absurd brainstorm.
 
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