Abilify- Stanford Clinic Patients

[choochoo]

@Learner

Of course I could use your same a rationale against CCI surgery. However I would be incorrect. An example of this is Jen B. She dealt with her hormonal problems and POTS etc separately. BUT, the surgery eradicated PEM, which is the holy grail for CFS sufferers. So in her case and in many others the corrective procedures she underwent went from success to success.

 

[choochoo]

And she started with interventive surgery for a thyroid problem.

 

[choochoo]

The argument cuts both ways.

 

[jaybee00]

I don’t think it’s really helpful to speculate on the mechanism of Abilify— either it works for you or it doesn’t. But I think it’s highly likely that the mechanism involves its effect on dopamine receptors NOT serotonin receptors.

 

[Treeman]

There are many complex interactions

But isn't it possible that it is still just one core / base problem causing the illness?

Does anyone know if anyone who is mild has taken abilify and left them almost symptom free?

Does anyone have anymore details of people taken abilify and progress they have made? Thanks

 

[choochoo]

I don’t think it’s really helpful to speculate on the mechanism of Abilify— either it works for you or it doesn’t. But I think it’s highly likely that the mechanism involves its effect on dopamine receptors NOT serotonin receptors.

I partly agree . But, I was under the impression 5HT's are dopamine modulators. Especially 5HT-7. I think the latter is unique in the way it can up and down regulate.

 

[choochoo]

But isn't it possible that it is still just one core / base problem causing the illness?

Does anyone know if anyone who is mild has taken abilify and left them almost symptom free?

Does anyone have anymore details of people taken abilify and progress they have made? Thanks

What I would say is this. There are literally hundreds of cases of partial and full remission of symptoms from IL-6 reducing treatments. Ampligen is even one of them. And incidentaly my own IL-6 levels were checked many moons ago in relation to eligibility for an Ampligen trial. They were off the scale practically.

 

[choochoo]

Since this conclusion from a scientific paper on Cytokines and CFS/ ME June last year..... things have changed dramatically IMHO.

With respect to the value of cytokines as therapeutic targets, the currently available evidence does not support the efficacy of interventions involving cytokine modulation. However, we believe that with an improved understanding of cytokine-related mechanisms, more appropriate therapeutic targets will be identified and closer associations will be confirmed between CFS and other neuroimmune disorders.

 

[choochoo]

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.

Diazepam done the exact same thing for me. The two drugs are in the same class. A totally different class of medication to Abilify.

I still use Diazepam for emergencies like medical appointments or unscheduled trips outdoors. These drugs WILL become dose tolerance in most cases. I have used them for 35 years but luckily for me I am still at 5mg after originally starting at 2mg. I use them probably about once a fortnight. These drugs blunt ones senses and at least with myself I become less hypersensitive.

 

[JES]

Good point, I wonder has Abilify been tested in the nanoneedle yet or is it being planned? Maybe @Janet Dafoe knows.

 

[choochoo]

Yes it has. Ativan had a positive effect on plasma.

 

[andyguitar]

But isn't it possible that it is still just one core / base problem causing the illness?

I'd say it's an idea worth considering but is unlikely. Mainly because what starts me/cfs is reported to be not just one thing. Some say it started with a head injury, or an infection, or a traumatic event, or was a gradual drift into ill health and so on. Also the reported symptoms (and their severity) varies from person to person. Then there is the question of what pre-existing health problems the person had. There are patterns and similarities but many differences.

 

[perrier]

I'd say it's an idea worth considering but is unlikely. Mainly because what starts me/cfs is reported to be not just one thing. Some say it started with a head injury, or an infection, or a traumatic event, or was a gradual drift into ill health and so on. Also the reported symptoms (and their severity) varies from person to person. Then there is the question of what pre-existing health problems the person had. There are patterns and similarities but many differences.

Dear Andy, if what you say proves true, then how can anyone get treatment? how can one discover what the issues are? It is not clear what you are getting at? This is many illnesses, are you saying?

I actually have watched this illness for a very long time, in a family member and in friends with it (but who had different onsets causes). I have to say, I have seen identical reactions to exertion--PEM. So, somewhere in the body, there is a problem when there is an exertion--regardless of how these folks initially became ill.

I sure wish the researchers could answer this question. Best wishes.

 

[choochoo]

The trigger is not what is important and probably cannot be prevented. What is important is the science behind the mechanism of the disease process. Science is about asking questions. What questions should be asked and why?

 

[choochoo]

For instance, why has virtually every drug that has been linked to dramatic
improvment by more than single digit numbers of people, been proven to impede IL-6 production? The untested drug Suramin which has been highlighted as a possible treatment also impedes IL-6.

Namely

ABILIFY
AMUSIPRIDE
VARIOUS OTHER ANTIPSYCHOTICS
AMPLIGEN
PRAMIPEXOLE
SURAMIN
TOCILIZUMAB
VARIOUS OTHER I-SUPRESSANTS
VALACiCLOVIR
VARIOUS OTHER ANTIVIRALS
VALGANCICLOVIR ( POSSIBLY )

 

[andyguitar]

Dear Andy, if what you say proves true, then how can anyone get treatment? how can one discover what the issues are? It is not clear what you are getting at? This is many illnesses, are you saying?

Ok, the point I'm making is that some treatments will help some patients but not others. And some treatments can harm some but not others. So even though all have a diagnosis of me/cfs there is a wide range of severity and the symptoms suffered.

This is many illnesses, are you saying?

I would'nt put it quite like that. More one illness but wide variations of it, which suggests to me that the underlying disease process is not the same for everyone.

 

[choochoo]

Ok, the point I'm making is that some treatments will help some patients but not others. And some treatments can harm some but not others. So even though all have a diagnosis of me/cfs there is a wide range of severity and the symptoms suffered.

I would'nt put it quite like that. More one illness but wide variations of it, which suggests to me that the underlying disease process is not the same for everyone.

I think the management of the condition has a lot of influence over disease progression. For instance, if you keep exercising when your body tells you to STOP you WILL eventually end up seriously ill and bedbound no matter what your level beforehand. I am testament to that as are all the rest of us here.

PEM in CFS has one organic cause iMHO.

 

[leokitten]

I think the management of the condition has a lot of influence over disease progression. For instance, if you keep exercising when your body tells you to STOP you WILL eventually end up seriously ill and bedbound no matter what your level beforehand. I am testament to that as are all the rest of us here.

PEM in CFS has one organic cause iMHO.

Or if you stop exercising but still keep trying to work full-time and push/crash all the time and as you continue get worse you still keeping working part-time and push/crash until you get so bad that you can’t work, like me.

 

[leokitten]

Sorry I swear I might’ve seen it in a post, but have there been testimonials of people benefiting from Abilify that aren’t severe?

 

[jaybee00]

Yes I was moderate now more like mild on Abilify. I’ve never been severe.