Abilify- Stanford Clinic Patients

[Jessie 107]

@ bread
No I don't have Eds or neuropathy.
I do have muscle wasting and weakness from being bedbound, I get muscle pain when I I crash.

 

[Jessie 107]

@ bread
Also pots.

 

[bread.]

@ bread
Also pots.

how long are you dealing with me/cfs? thank you so much!

have you tried mestinon?

 

[lenora]

Interesting, but I had read elsewhere (here, a journal, the Internet????) that this drug has been used to help people with bipolar disease. I'm from a family where many members had bipolar illness. It makes me sad to think that they suffered what they did, led lives of "quite desperation" and made so many others suffer because of something they couldn't control. I would have been a member of that club except that it hit my brain in a different location, thus I ended up with ME and a host of other illnesses (having nothing to do with ME).

If Abilify could have helped them, I believe it's a choice they would have made. Do you know how horrible it is to live with frequent attacks of bipolar illness? To also be a member of a family where so many suffer and yes, you hate them for what they do at the time, and your mind is in several different places at once? Seeing them in State Mental Hospitals? It's pretty awful....all of it. .

I keep saying, and I mean this: No matter how many people take a drug, or even a vitamin, we're all guinea pigs and always will be. So are the doctors who prescribe the drugs, as well as the drug cos. themselves (and yes, there's a huge difference between a drug co. that knows it's causing danger and keeps it quiet because of what it will do for profits. That's not a co. we want to have contact with...and I hope the govt. does find them and fine them huge amounts of their profits.). Still, as I recall from whatever I read it in, we're basically talking about something along the bacterial line. Imagine if you had a mother, brother or sister who had something in the same family as your illness, but their lives were completely destroyed no matter how many degrees they had, how hard they worked and the horrors they imposed on others? Let science continue their work....nothing will ever be 100% side-effect free.

I take another neuroleptic to prevent serious seizures that only began late in life. Gabapentin, one of the earliest drugs we had for pain relief was mainly used for epileptic seizures, but in us it stopped the transmission of pain from the brain to the spinal cord. It was a wonderful thing to those of us who were suffering from pain that never ended. Please think about these things. Sometimes it comes under the heading of "progress." And if one has suffered enough, that's good enough. Yours, Lenora.

 

[Jessie 107]

how long are you dealing with me/cfs? thank you so much!

have you tried mestinon?

I started gradually become ill in 2014 by the time I got to 2018 I was fully bed-bound.

I haven't tried Mestion yet have you?

 

[stefanosstef]

where did you get ibudilast?

From science.bio

 

[lenora]

Abilify got me from very severe to moderate in 2 months ...

Hello @Martin......This is my point exactly. We each have to determine whether or not it's worthwhile to go with a drug depending upon how ill we are....and how long it has been. I respect those who want to keep their bodies pure, I was one of them once, but we're now talking 34 +- years later. How long are we willing to give of ourselves, and for what purpose?

We can tell each other side-effects, but then let's respect a decision once it's made and especially the person who has made it. We all do the very best we can. Personally, I'm thrilled to see that you've made such good progress. Congratulations. Yours, Lenora.

 

[JES]

Interesting, but I had read elsewhere (here, a journal, the Internet????) that this drug has been used to help people with bipolar disease. I'm from a family where many members had bipolar illness. It makes me sad to think that they suffered what they did, led lives of "quite desperation" and made so many others suffer because of something they couldn't control. I would have been a member of that club except that it hit my brain in a different location, thus I ended up with ME and a host of other illnesses (having nothing to do with ME).

If Abilify could have helped them, I believe it's a choice they would have made. Do you know how horrible it is to live with frequent attacks of bipolar illness? To also be a member of a family where so many suffer and yes, you hate them for what they do at the time, and your mind is in several different places at once? Seeing them in State Mental Hospitals? It's pretty awful....all of it. .

I keep saying, and I mean this: No matter how many people take a drug, or even a vitamin, we're all guinea pigs and always will be. So are the doctors who prescribe the drugs, as well as the drug cos. themselves (and yes, there's a huge difference between a drug co. that knows it's causing danger and keeps it quiet because of what it will do for profits. That's not a co. we want to have contact with...and I hope the govt. does find them and fine them huge amounts of their profits.). Still, as I recall from whatever I read it in, we're basically talking about something along the bacterial line. Imagine if you had a mother, brother or sister who had something in the same family as your illness, but their lives were completely destroyed no matter how many degrees they had, how hard they worked and the horrors they imposed on others? Let science continue their work....nothing will ever be 100% side-effect free.

I take another neuroleptic to prevent serious seizures that only began late in life. Gabapentin, one of the earliest drugs we had for pain relief was mainly used for epileptic seizures, but in us it stopped the transmission of pain from the brain to the spinal cord. It was a wonderful thing to those of us who were suffering from pain that never ended. Please think about these things. Sometimes it comes under the heading of "progress." And if one has suffered enough, that's good enough. Yours, Lenora.

Antipsychotics are often disliked by patients suffering from bipolar disorder or schizophrenia not so much due to inefficiency, but rather due to side effects. Tardive dyskinesia or involuntary body movements is probably the worst one and it seems to affect as much as 20% of the patients on atypical antipsychotics and weight gain is the other not so nice one. So yeah, I can really see the dilemma that some patients face.

It should be noted though that the anecdotal report of benefits in ME/CFS from Abilify have been from a low-dose regimen (@Martin aka paused||M.E. 's 4 mg is on the higher side of this, Stanford seems to be using a maximum of 2 mg, whereas in bipolar the starting dosage is 10-15 mg). The lower the dosage, the less is the risk of any side effects in general. The tardive dyskinesia effect in particular seems to be a result of dopamine blockade, but at low dosages there isn't much of this going on. I noticed some benefits from taking quetiapine at low dosage, where it primarily seems to work as a sleeping aid due to anthistamine properties. It could be that the primary action on dopamine receptors might have little to do with how these drugs help in ME/CFS and perhaps lowering neuroinflammation through other mechanisms could be the real cause, but this is just speculation for now.

So yeah, I'd say it's still not risk-free to take low-dose antipsychotics and it would still be an experimental treatment, but at the same time these drugs could be working rather differently at a low dosage compared to the normal dosage, like with LDN, which is used to prevent alcoholism in standard dosage.

 

[Learner1]

Now that's interesting to me! I often get severe headache and back pain that is meningitis-like on the 3rd day after my IVIG infusion. I have used Boswellia in the past, but not since being on IVIG. Thanks for the tip!

I am using it for similar symptoms. I take 2g Designs for Health CurcumEvail plus 2g Thorne Boswellia every 3-4 hours which reduces the symptoms, along with diphenhydramine and dexamethasone.

 

[Learner1]

Abilify got me from very severe to moderate in 2 months ...

Can you explain by what mechanism, please? At that point, were you cured and went off it? Or did you stay on it to stay in "remission"?

 

[Learner1]

ugh, you got neuroinflammation from IVIG? What is the explanation for it by you or your doctor? MCAS?
how wonderful.
Seems IVIG can swing both ways, annoying!

Yes. It's a temporary side effect. I am on a higher, autoimmune dose,, and I have MCAS, celiac, and other factors that increase my tendency to react. However, the IVIG has been very helpful, so its worth the inconvenience.

 

[Martin aka paused||M.E.]

Can you explain by what mechanism, please? At that point, were you cured and went off it? Or did you stay on it to stay in "remission"?

It’s reducing neuroinflammation. Yes, you have to stay on it. It's a treatment not a cure

 

[YippeeKi YOW !!]

It’s reducing neuroinflammation. Yes, you have to stay on it. It's a treatment not a cure

I'm so glad you found something that's working, @Martin aka paused||M.E. .... I've been following along with your considerable struggles since your Still Very Severe thread, and have silently applauded your courage, your determination not to let 'It' win, to keep fighting, to know that there's something out there that will make a difference.

I haven't posted because I had nothing helpful to offer, treatment-wise, and considering what you were dealing with, and how lttle energy you had to bring to that battle, I didnt think that chewing that energy up with a "Hey, you go !!!" kind of message was helpful.

But it feels good know that you've had a positive reaction after all that time, all that pain, all that fear and uncertainty, all those battles.

So here goes: Hey, Martin, you ggggggoooo !!!

Onward and upward !!!

 

[Martin aka paused||M.E.]

I'm so glad you found something thats working, @Martin aka paused||M.E. .... I've been following along with your considerable struggles since your Still Very Severe thread, and have silently applauded your courage, your determination not to let 'It' win, to keep fighting, to know that there's something out there that will make a difference.

I haven't posted because I had nothing helpful to offer, treatment-wise, and considering what you were dealing with, and how lttle energy you had to bring to that battle, I didnt think that chewing that energy up with a "Hey, you go !!!" kind of message was helpful.

But it feels good know that you've had a positive reaction after all that time, all that pain, all that fear and uncertainty, all those battles.

So here goes: Hey, Martin, you ggggggoooo !!!

Onward and upward !!!

Thank you so much

 

[Learner1]

It’s reducing neuroinflammation. Yes, you have to stay on it. It's a treatment not a cure

There are a LOT of other things that reduce neuroinflammation that do not have the risks that Abilify does. Boswellia and curcumin are quite effective and cross the blood brain barrier, as just 2 examples.

 

[lenora]

Hello @Learner1.....I took both boswellia and curcumin for years (try at least 25) and while they helped, they didn't remove the offending behavior. Can I honestly say they helped with inflammation....yes, they did, but it just wasn't enough and many different doses were tried. I was rather surprised to read that this was now being used for inflammation, it also made me chuckle, as the doctors told me it certainly wouldn't do anything for me and may even harm me. Still, I didn't stop as I wanted to do as much as possible to change what this illness had done to my body. I also used quercetin, boswellia's first cousin, o boost it as much as possible. Please note that these were not the usual doctor, but those who knew and understood alternative methods of control.

I've had a lot of good help from vitamins/supplements and I'm thankful for it. I just really believe that the body needs both when ill....and to be honest, at some point most of us can switch over to regular vitamins for help. In the meantime, we deal with a lot of different bottles and keep reading, re-reading until we become experts in the field ourselves. I also believe (that's just me) that certain drugs will always travel with us...such Enzyme CoQ-10 or Ubiquinol once we get established on them. These drugs are very good for us and we need them for multiple purposes. Wishing you well. Yours, Lenora.

 

[YippeeKi YOW !!]

There are a LOT of other things that reduce neuroinflammation that do not have the risks that Abilify does. Boswellia and curcumin are quite effective and cross the blood brain barrier, as just 2 examples.

Like you, I'm leery of using Abilify for the purposes they're using it for, as I posted way earlier in this thread. It does seem like, risky.

But the bottom line for me has always been " .... if it works, it works....", whether it's homeopathy, deep tissue massage, meditation, LDN, herbs, supps, or, in this case, a low dose, otherwise potentially dangerous anti-psychotic. And for @Martin aka paused||M.E. , it's working, and after all that he's been thru that's really all that matters.

It's not just improving his QOL, it's giving him hope, a substance as valuable and elusive as Unicorn tears if you've been dragged thru hell long enough.

On the other hand, I'm really delighted that Boswellia and curcumin are helping you with the side effects of the IGIV treatment, which sound pretty awful, and your courage and determination, like Martin's, are truly impressive. It seems to be an unfair price to pay for anything short of near-full remission.

But then nothing about this creepy little hellish haunted house of a illness is fair ....

EDITED for clarity. Oh, yeah, and typos .....

 

[Martin aka paused||M.E.]

There are a LOT of other things that reduce neuroinflammation that do not have the risks that Abilify does. Boswellia and curcumin are quite effective and cross the blood brain barrier, as just 2 examples.

Yea I tried them and they did nothing

 

[Learner1]

Yea I tried them and they did nothing

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...

 

[Martin aka paused||M.E.]

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...

I will look into it. Thank you!