Abilify- Stanford Clinic Patients

[leokitten]

Sorry @hmnr asg how long have you been on Abilify and at what daily dose?

 

[hmnr asg]

No problem. Sorry i didnt include this.
I am currently on 1mg and I have been taking it roughly for three weeks (I dont remember exactly, mid september-ish).

The first week was no improvements and just the side effects of starting a new medication. The second week i got some benefits. Third week is even better.

 

[Sushi]

Abilify is extensively metabolized in the liver mainly by the CYP2D6 and CYP3A4 enzymes whereas diazepam, while also demethylized by the CYP3A4, is also primarily metabolized by the CYP2C19 enzyme system .... so slightly different mechanisms in play which could make a big difference ....

Thanks, that is very interesting as SNPs in CYP2D6 are quite common in this population--I am a poor metabolizer through that pathway and my genetic test (pharmacogenetics) says that if I were to take Abilify I should take it at half the regular dose for safety.

 

[choochoo]

No problem. Sorry i didnt include this.
I am currently on 1mg and I have been taking it roughly for three weeks (I dont remember exactly, mid september-ish).

The first week was no improvements and just the side effects of starting a new medication. The second week i got some benefits. Third week is even better.

This is so good to hear and you have posted some great comments. You, like myself are desperate. I'm just glad you have found something beneficial.

There is something with Abilify for sure. Too many people at the severe end of this shattering illness are reporting improvement.

 

[Jessie 107]

No problem. Sorry i didnt include this.
I am currently on 1mg and I have been taking it roughly for three weeks (I dont remember exactly, mid september-ish).

The first week was no improvements and just the side effects of starting a new medication. The second week i got some benefits. Third week is even better.

It will continue to get better

 

[choochoo]

I think the 5HT-7 receptor. It is an explanation for everything. This receptor is mighty unusual for several different reasons and science is only at the tip of the understanding of this recrptor's involment with inflamation, the immune system in general and specific hormone regulation. Its strange that the nanoneedle singled out SURAMIN as a drug that may correct abnormalities observed in the blood of the severe. Suramin just happens to have a major effect on 5HT-7 and pro-inflammatory IL-6. In layman's terms HT5-7 is unusual in its ability to both up-regulate and down-regulate inflammatory IL-6. If something goes wrong with the fine balancing act that the 5HT-7 has to perform, then the havoc that can be tolled upon the human body is likely to be something similar to what we are suffering with severe ME/CFS

Due to the fact that NOTHING before has been seen that can help significant numbers of the severe so dramatically ( I know because I'm one of them for 40 odd years ), I believe the main focus needs to be on the areas I have outlined, and reasons why, I have mentioned above. Coincidence? Personally, I dont think so.

 

[andyguitar]

This is fairly up to date.

 

[choochoo]

And i see @Hip]'s amisulpride is mentioned at the top of the alphabetical list for 5HT-7 antagonists. I dont think its coincidental that Hip's improvement is via a similar drug to aripiprazole.

 

[choochoo]

amusipride the antagonist and aripiprazole the agonist. Whatever is going on it seems as though these two drugs are modulating the action of 5HT-7 in CFS/ME. Maybe the kicks from these two drugs give the faulty 5HT-7 receptor a jolt. The question is how big a jolt can be given in order to stop the perverted cell danger eesponse. And will the effects last?

 

[choochoo]

What is fascinating is that IL-6 production (in which 5zHT-7 receptor has major influence ) has been implicated in MCAS for some time. Is this coincidental as well?

 

[andyguitar]

What is fascinating is that IL-6 production (in which 5zHT-7 receptor has major influence ) has been implicated in MCAS for some time. Is this coincidental as well?

Probably not. But IL-6 production might not be the only factor here.

 

[choochoo]

Probably not. But IL-6 production might not be the only factor here.

Agreed. But it has to be a factor. Obviously the problem is amazingly complex. But, at the start of the CFS illness IL-6 prevelance is low. As the disease process move on, IL-6 levels start to increase and the level can go through the roof in the severe ( as in my case ). It is as if our bodies are attempting to arrest IL-6 levels until the point where it is eventually overwhelmed with inflammatory cytokines. Once this happens the suferer has usually progressed to severe or very severe. The floodgates eventually open.

 

[choochoo]

It is also reported, physicians are using Tocilizumab for Covid 19 inflammatory Cytokine storm. Like Abilify Tocilizunab has a major effect on IL-6.

 

[hmnr asg]

It is also reported, physicians are using Tocilizumab for Covid 19 inflammatory Cytokine storm. Like Abilify Tocilizunab has a major effect on IL-6.

Sorry for the stupid question, what about Ativan ? How would you explain it’s temporary benefits when used sparingly ? I have had cfs for 10 years and the only things that have given me benefits has been Ativan ( when used infrequently) and now abilify.

 

[Learner1]

think the 5HT-7 receptor. It is an explanation for everything

Nothing is an explanation for everything, but it is useful to look into how this receptor is a factor in ME/CFS.

What is fascinating is that IL-6 production (in which 5zHT-7 receptor has major influence ) has been implicated in MCAS for some time. Is this coincidental as well?

Likely not. There are many complex interactions.

https://www.hindawi.com/journals/jir/2015/354957/

https://onlinelibrary.wiley.com/doi/full/10.1111/dth.13191

https://www.researchgate.net/public...ic_Inflammation_of_the_Gastrointestinal_Tract

There is something with Abilify for sure. Too many people at the severe end of this shattering illness are reporting improvement.

And many have reported trouble with it. Given the complexity of this disease, it is highly unlikely that one substance is a cure. Or that it doesn't have a cascade of other effects.

If it was simply a choice between safer and less safe, I would go for supplements 99% of time (or if you want 100% safety, homeopathy). The problem is, no supplement has helped any severe ME/CFS patient I am aware of to improve in any significant degree.

It is highly unlikely that anyone substance, drug or supplement, is going to fix any of us. We have complex biochemistry, complex immune system issues, as well as a host of other issues that may or may not relate to or be feeding our disease. From my own experience, and that of other patients That happened on a similar path and been getting improvements, we are doing a number of things that include both drugs and supplements, which are chosen to work synergistically to support entire bodily systems. having one point intervention isn't going to be effective, as well it may have a positive effect for a while if that's been the missing ingredient, once it's supplied, other cofactors will quickly be used up, and then it will become less effective. Supporting the function of entire biochemical systems over time is fat more likely to be effective.

Doctors use antipsychotics in high doses for example in schizophrenia and are now increasingly aware of the long-term metabolic side effects, but do you leave a schizophrenic patient untreated because of that?

Psychiatric drugs are at best a Bandaid, until a complex system is fixed. It has been known for quite a while that the microbiome, nutrients, diet and food allergies, and the immune system all interact to produce a number of psychiatric symptoms. The DSM V is notoriously inaccurate from a medical point of view, arbitrarily grouping symptoms that may be driven by completely different biological processes for the convenience of psychiatrists to dish out drugs that, by and large, do not help a large percentage of patients due to this flawed methodology, and can cause more problems than they solve, leading to polypharmacy.

I unfortunately learned all.of this through extensive research in dealing with the serious psychiatric illness of an immediate family member who was prescribed a number of psychiatric drugs by multiple MDs and was finally made better by changing the diet, attention to healing the gut and microbiome and significant and sustained manipulation of biochemistry through nutrient intervention, leading to a complete cure.

My medication before abilify was:
cymbalta 40mg, lyrica 50 mg before sleep, clonazepam 0.5 mg occasionally, pepcid complete my CFS severity was probably somewhere between moderate and severe i think.

Each of these drugs is known to deplete several nutrients, which can lead to increased fatigue, neurological symptoms, and a multitude of other symptoms, including those related to the immune system.

So I didn't take abilify. And I have been barely alive the last two years. And finally out of desperation I started taking it and WOW is it working. Now I am wondering if I had started it back then maybe my life would have been different.

Each of us have choices. There are a multitude of treatments out there. It's always the last treatment we try that helps the most, right?

When you scare someone of a drug because of potential side effect, that may be as irresponsible as someone peddling a dangerous medication. You are affecting their choice and if a medication could actually be helping them you are actually causing them harm. The safest choice isnt always to NOT take something that might otherwise be helpful (despite side effects).

No one is trying to scare anyone. What is useful is to provoke some critical thinking. No treatment stands alone. For every action we take, there are effects, and in most cases, a cascade of downstream effects.

These books provide different angles on this and alternatives...

https://www.amazon.com/dp/0446505242/ref=cm_sw_r_cp_apa_i_xbXFFb0GT058R

https://www.amazon.com/dp/1591202590/ref=cm_sw_r_cp_apa_i_eeXFFbVQQPHKT

https://www.amazon.com/dp/1478985550/ref=cm_sw_r_cp_apa_i_UeXFFb200K3WP

https://www.amazon.com/dp/1626361282/ref=cm_sw_r_cp_apa_i_WmXFFbT6MHF3Y

If you think a person shouldnt take any medication that might have any side effects in order to see if their cfs could get better, then I have a few possible explanations for why might think like that:

1- you dont have cfs and so you dont undestand the desperation of losing everything to cfs
2- you are super mild and so there is obviously no reason to take any risky medications
3- your life was basically the same before your cfs started. So there is no sense of urgency to roll the dice and see if something can help. Perhaps you didnt have a thriving career, a fulfilling social life, interesting hobbies etc. so you havnt lost much to CFS
4- you have found the cure and you are just not sharing it with the rest of us! please share! I will venmo you all my 200$

Unfortunately, though I feel your pain, these explanations are limited and misguided.

There are several of us who have made gains through thoughtful and comprehensive programs that include pharmaceuticals, supplements, and physical interventions, in a comprehensive approach. I've attached the modular approach I've used, that I found on the internet - thoughtful testing has uncovered problems in each box in the diagram, and treatments for the problems uncovered have been applied. If Abilify's major impact is in manipulating 5HT7, then that would go into the immune box here, but as you can see, that leaves a lot of ground uncovered.

Unfortunately, there is too much if an expectation of a magic bullet or a quick fix. This is a complex, multi-organ system disease, with different patients having different clusters of symptoms and lab values. Some also have physical components, like CCI/Chiari. The better model might be to direct a symphony of biochemistry and physical medicine to gradually improved overall function, with different pieces taking precedence over time. I'm actually really glad you are getting helped at the moment by Abilify, but definitely hope you have done other trucks up your sleeve to deal with the long term outcome, which is unlikely to be a cure.

And, unfortunately, drugs get paid for by the system. Supplements don't, and mist doctors are ignorant of nutrient status. Even though the metabolomics research shows that ME/CFS patients tend to have issues with B vitamins, oxidative and nitrosative stress, amino acids, phospholipids/sphingolipids, and the microbiome. Ignoring these is not likely to bring back normalcy.

 

[choochoo]

Although several doctors including R Davis have put on record that the solution to the problem could be a reset or the use of chemical/s to shift the body out of its CFS state.

 

[choochoo]

@Learner

Thanks for the Holtorf approach. Makes sense.

 

[Learner1]

Although several doctors including R Davis have put on record that the solution to the problem could be a reset or the use of chemical/s to shift the body out of its CFS state.

Yes, this would be nice, wouldn't it? It still won't fix thyroid hormone imbalances, adrenal insufficiency, lack of testosterone or other sex hormones, B vitamin deficiencies amino acid deficiencies, lack of minerals, active Epstein-Barr or other herpes virus or other viral or bacterial infections, autoimmune processes, hypercoagulation, spinal issues, mast cell activation, and whatever else patients have going on.

I have spoken at length with Robert Naviaux, and he suggested that removing all the cell dangers on his list of categories of things that provoke cell danger response and then moving from winter metabolism to summer metabolism should be helpful, and then only if normal function is not restored, then one would try suramin.

 

[choochoo]

And out of hundreds if not thousands of drugs tested by the nanoneedle they come up with Suramin. A drug that is potent and dangerous. Suramin just happens to be one of the very few drugs that reduce IL6 induced by 5HT'7.

Coincidence?

I'm pretty good with numbers and the odds against such a coincidence are long. Very long. The improvments found from Aripiprazole and Amisulpride and the similarity in some ways to Suramin ( in its targeting of HT5-7 and regulation of IL6 ) cannot be coincidental.

The chances of the nanoneedle selecting just Suramin ( and the totally different benzo Ativan) and the drugs effects on IL-6 being similar to Arip and Amis are literally massive

 

[choochoo]

If you ask me I think that they have seen the nanoneedle single out Suramin. They want to obtain the drug in deliverable therapeutic quantities and they want to run a trial. Its promising.

In the meantime I think they've looked at drugs which can obtain similar effects until sufficient quantity of suramin is obtained for therapeutic use and for possible clinical trial. They came up with Abilify and began prescribing it for the severe.