Abilify- Stanford Clinic Patients

SueJohnPat

SueJohnPat

Sue
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236
Location
Medford NJ
andyguitar said:
Ah ha! Something that gets a mention from time to time here is people saying they "felt normal for a while" Might only be minutes or a couple of hours but it does happen. If you are looking for the elusive switch @Wishful this might be it.
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I have been trying everything for 10 years. I have made progress. . My body had stopped torturing me for the most part just felt blah like stuck for the last year or so.
 
W

Wishful

Senior Member
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6,034
Location
Alberta
andyguitar said:
If you are looking for the elusive switch @Wishful this might be it.
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The problem is that I had multiple triggers for temporary remissions. Prednisone, cumin, and T2 all triggered them the first couple of times. There were several other remissions from unknown triggers. None worked more than a few times. Even if Abilify did trigger a temporary remission for me, there's no reason to expect it to work more than once or twice. If it continues to work for several people, then it would be something to try.

My three triggers must have some chemical reaction in common, but I don't see what it is.
 
JES

JES

Senior Member
Messages
1,372
Treeman said:
Ron Davies said that in a trail 80% of the people had some level of improvement, some small some big
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That number I would guess is from the Stanford ME/CFS clinic, which isn't run by Davis. They have been prescribing Abilify for a while to patients now, so most likely it's only based on that clinic's patient reports. The problem with that number is that it includes all placebos as well. In another clinic which I visited, a report has showed that 75% of patients with ME/CFS improve with LDN (source). Jay Goldstein also had close to 100% success with the patients he saw, but we never got to know if their improvement was maintained.

If there's an 80% number that improves in a randomized controlled study, then that's a huge win and the 20% who don't may well have ME/CFS as well. I'm not aware of a chronic disease where a drug works for everyone and the broader the disease "concept", the more difficulty you'll have finding a drug that produces any result at all over placebo.
 
Martin aka paused||M.E.

Martin aka paused||M.E.

Senior Member
Messages
2,291
Hello folks!

I just wanted to give you guys an update. Some of you will know how severe my illness was. I was that worse than opening my eyes for a second made me crash for days.
I'm on Abilify and Celebrex since almost four months now. Here are the milestones:

- I'm back at work
- I'm back on tinder :-D
- I'm regularly out in the woods
- I can meet friends daily
- I can walk a few steps
- I can sit as long as I want to
- I don't have brain fog or any sensitivities
- my tube will be removed in November

I see many ppl here arguing. What are you doing? It's not the question if Abilify is a dangerous drug. The question is how severe you are to try it. I would not do this if I was mild to moderate. But I was very very severe. Ability saved my life.

To those of you who say you just have to treat infections, vitamin and other depletions and so on: I was tested for everything MULTIPLE times. There was no depletion. No infection. These generalisations are obsolete!

Now you can verbally kill me, I won't read it :)

Best of luck to all of you

Martin
 
B

bread.

Senior Member
Messages
499
Martin aka paused||M.E. said:
Hello folks!

I just wanted to give you guys an update. Some of you will know how severe my illness was. I was that worse than opening my eyes for a second made me crash for days.
I'm on Abilify and Celebrex since almost four months now. Here are the milestones:

- I'm back at work
- I'm back on tinder :-D
- I'm regularly out in the woods
- I can meet friends daily
- I can walk a few steps
- I can sit as long as I want to
- I don't have brain fog or any sensitivities
- my tube will be removed in November

I see many ppl here arguing. What are you doing? It's not the question if Abilify is a dangerous drug. The question is how severe you are to try it. I would not do this if I was mild to moderate. But I was very very severe. Ability saved my life.

To those of you who say you just have to treat infections, vitamin and other depletions and so on: I was tested for everything MULTIPLE times. There was no depletion. No infection. These generalisations are obsolete!

Now you can verbally kill me, I won't read it :)

Best of luck to all of you

Martin
Click to expand...


Glad for you!

I am not interested in verbally killing you, from the information we have it seems at least as likely as not that your treatment regimen was not what made you better. I am not saying you are not sick or not better, just that this might be a correlation or worse a „doping like effect“.

I also had the chance to look at your metabolon results that are posted here online and while they are not normal they do not resemble what most metabolic studies have found in me\cfs patients; of course these studies are not conclusive but they are an approximation like your individual drug trial results are.

We are all different, some are more different than others that is a normal spread in a badly defined disease.

Your conclusion that the more severe you are the more prone to try one is seems a bit off as this group is already in great jeopardy.


Thank you for sharing your story.
 
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pattismith

pattismith

Senior Member
Messages
3,988
Martin aka paused||M.E. said:
Hello folks!

I just wanted to give you guys an update. Some of you will know how severe my illness was. I was that worse than opening my eyes for a second made me crash for days.
I'm on Abilify and Celebrex since almost four months now. Here are the milestones:

- I'm back at work
- I'm back on tinder :-D
- I'm regularly out in the woods
- I can meet friends daily
- I can walk a few steps
- I can sit as long as I want to
- I don't have brain fog or any sensitivities
- my tube will be removed in November

I see many ppl here arguing. What are you doing? It's not the question if Abilify is a dangerous drug. The question is how severe you are to try it. I would not do this if I was mild to moderate. But I was very very severe. Ability saved my life.

To those of you who say you just have to treat infections, vitamin and other depletions and so on: I was tested for everything MULTIPLE times. There was no depletion. No infection. These generalisations are obsolete!

Now you can verbally kill me, I won't read it :)

Best of luck to all of you

Martin
Click to expand...
Hello Martin, we know how bad you were, I'm so glad for you!:hug:
 
W

Wishful

Senior Member
Messages
6,034
Location
Alberta
Martin aka paused||M.E. said:
To those of you who say you just have to treat infections, vitamin and other depletions and so on:
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I don't think they're proposing that as the route to a cure; they're just choosing that route over just trying things at random with a goal of finding something that reduces some symptoms. It looks like a scientific approach to treatment, but since we don't have anything like a verified theory for ME, it's really just choosing a theory more or less at random. Of course there'll be some success with the "appearing scientific" approach, since if you try enough things by theory, you should eventually encounter a few things that work, even if their actually mechanism for working doesn't match the theory. I don't see a practical method of determining whether that approach has a greater chance of finding something that works than purely random selection.

For me, I found one treatment from other people's reports, one from observation and my own hypothesis, and two by accidental discovery. None from testing or other people's hypotheses of ME.
 
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