Abilify- Stanford Clinic Patients

leokitten

leokitten

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Martin aka paused||M.E. said:
I don’t know? But how many reports have you read? On Facebook I haven’t seen many
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Im not on Facebook but on here and S4ME it seems like more often than not did people develop tolerance, but then again I can tell there are a lot of people who posted they were taking it and haven’t regularly updated their status (please do people!!)
 
Martin aka paused||M.E.

Martin aka paused||M.E.

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leokitten said:
Im not on Facebook but on here and S4ME it seems like more often than not did people develop tolerance, but then again I can tell there are a lot of people who posted they were taking it and haven’t regularly updated their status (please do people!!)
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I made Fereshteh aware of the problem and it didn’t seem new to her. Another report from a young lady as a screen. So yes, it might be much more. We will know in a few months. We contacted the manufacturer and a Professor from the university of Rostock wrote back. They told us an expert would get in touch with us. We will see. I think the dopamine receptors got desensitised... that’s what you can observe in dopamine agonistic drugs. I will post when we get an answer.
 

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junkcrap50

junkcrap50

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leokitten said:
Wait so poop out in ME anecdotally is as low at 5% in pwME who trial Abilify? Sorry I thought it was much, much higher.
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Yeah, this seems pretty important to try and get a figure on. Even if there's a rudimentary survey on here or on healthrising. I thought it was the opposite, that only ~5% did NOT have it poop out and the overwelling majority lost benefits. Partly why I never bothered looking into Abilify.
 
Martin aka paused||M.E.

Martin aka paused||M.E.

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junkcrap50 said:
Yeah, this seems pretty important to try and get a figure on. Even if there's a rudimentary survey on here or on healthrising. I thought it was the opposite, that only ~5% did NOT have it poop out and the overwelling majority lost benefits. Partly why I never bothered looking into Abilify.
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We have to wait. Most of the patients are in the first weeks on Facebook... And Dr. Bonilla points the finger towards the patient when had says “it doesn't work anymore” and Stanford Clinic doesn't give any information. Maybe the OMF study will be long enough to get a rough picture
 
WantedAlive

WantedAlive

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leokitten said:
Then what is their theory as to why Abilify works?
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As to why Abilify and dopamine agonistic activity might be helping ME/CFS, there may be a common pathology shared with Encephalitis Lethargica, Parkinson’s, ALS, Multiple Sclerosis and Schizophrenia: dopamine depletion by oxidation producing dopachrome and other chrome indoles that are neurotoxic. In all these disorders there may be involved either dopamine depletion or neurotoxin, or both, and the loss or release of neuroprotectant neuromelanin.

When prescribed L-Dopa to resolve dopamine depletion, there is a honeymoon period before increased dopamine oxidation becomes too neurotoxic. Low dose Abilify, or other dopamine receptor agonists may be advantageous in this respect as dopamine mimetics, and avoid increased dopamine oxidation. This doesn’t however explain why Abilify stops working for PwME, although possibly excess mimetic is allowing the build-up of free dopamine that can become oxidised.

The presence of iron can accelerate the oxidation of dopamine and result in accumulation of hydrogen peroxide concentrations, which is enhanced at lower pH. In ME/CFS there is increased heme and heme oxygenase and there is evidence of altered metabolic and respiratory acid/base balance, which could be implicated in high dopamine oxidation. Infection is known to draw iron out of circulation into tissue.

The motor symptoms of Parkinson’s are caused by cell death in the Substantia Nigra. The Substantia Nigra (SN) is so named because of the presence of dark coloured neuromelanin “dark substance”. Neuromelanin is formed through a series of reactions beginning with cytosolic dopamine oxidation partly promoted by iron. Parkinson’s patients show ‘bleaching’ in the SN, having up to 50% less neuromelanin which binds neurotoxic metals that could promote oxidative stress and neurodegeneration. A similar loss of pigmented neurons of the SN were seen in HIV infected brains, and in Encephalitis Lethargica, so it may be common with infectious onset disease.

Neuromelanin accumulates with age and is assumed to be neuroprotective. However there seems to be a vulnerability between balancing the production of catecholamines and protection from oxidative stress and toxins. Also, higher concentrations of metals can convert neuromelanin from antioxidant to prooxidant increasing oxidative stress. Lipid peroxidation and oxidative stress can lead to cell death and release of neuromelanin from catecholaminergic neurons into the brain and may initiate or exacerbate brain inflammation which causes further neuromelanin release, neuroinflammation and neurodegeneration.

Whether any of this is part of the ME/CFS pathology, of course I don’t know, but when in comes to movement disorders of the brain, a common theme isn’t out of the question. I do recall someone posting a comment by Whitney Dafoe earlier this year that OMF had discovered something that was not just relevant to ME but all science, which suggests a common pathway somewhere.

Interestingly, the supplements CoQ10, Vitamins B1, B3, folic acid, Vitamin E, Selenium and Zinc regularly taken by PwME have been demonstrated in Parkinson’s and ALS studies to have a protective effect against the depletion of dopamine, and seem to suggest that these natural methyl acceptors may slow the progress of Parkinsonism and ALS. An ALS patient survived 22 years taking high doses of CoQ10, selenium, zinc, dolomite, B1, B3, Folic acid and Vit E. Maybe the benefits of these supplements having similar effects in PwME?

Some reference to dopamine oxidation and neuromelanin here if interested.
Neuromelanin role in OS and ND https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7829956/
pH dependent oxidation of Dopamine https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6275323/
 
hmnr asg

hmnr asg

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Martin aka paused||M.E. said:
We have to wait. Most of the patients are in the first weeks on Facebook... And Dr. Bonilla points the finger towards the patient when had says “it doesn't work anymore” and Stanford Clinic doesn't give any information. Maybe the OMF study will be long enough to get a rough picture
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Exactly ! He did the same to me. I said abilify has stopped working and he told me very bluntly that : " no ! It's working ! Keep taking it! It's an anti-inflammatory!"

I find him to be less informed than the average person on PR. I dropped him after that visit.
 
hmnr asg

hmnr asg

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@leokitten I know in case of antidepressants sometimes they switch you to a new SSRI when one poops out. I know this is a crude analogy, but isn't it possible that doing the same with antipsychotics could help with poop out ? I know it's a very long shot but just maybe !

And unfortunately as you said most people don't report back their results. Maybe 10% do. Which is awful because if we don't try to crowd source some rudimentary analysis of this medication we have no recourse. Whose going to help us ? Bonilla ? He doesn't even acknowledge that it stops working.
 
Martin aka paused||M.E.

Martin aka paused||M.E.

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hmnr asg said:
@leokitten I know in case of antidepressants sometimes they switch you to a new SSRI when one poops out. I know this is a crude analogy, but isn't it possible that doing the same with antipsychotics could help with poop out ? I know it's a very long shot but just maybe !

And unfortunately as you said most people don't report back their results. Maybe 10% do. Which is awful because if we don't try to crowd source some rudimentary analysis of this medication we have no recourse. Whose going to help us ? Bonilla ? He doesn't even acknowledge that it stops working.
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And creates the worst studies ever
 
leokitten

leokitten

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hmnr asg said:
Whose going to help us ? Bonilla ? He doesn't even acknowledge that it stops working.
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Bonilla seems like a total blasting idiot. No one even knows if Abilify is working as an anti-inflammatory and no self-respecting doctor would 1) ignore and not believe patients (what in the world is their motive Bonilla? If you are reading this which I hope you are think about it for a second we are all desperate and if something stops working it really stopped!) and 2) declare with such confidence and absolute certainty why Abilify works in ME without any strong enough scientific evidence.
 
leokitten

leokitten

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sb4 said:
Anyone taking Abilify notice signs of potential diabetes type issues whilst taking it. Like increased hunger, or weight gain?
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Maybe increased hunger the first few weeks but then it quickly went away. I've lost weight since starting Abilify (likely not due directly to Abilify but because I can do much more)
 
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