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Dr. Bob is Robert Hsiung, MD,
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Posted by Tomatheus on December 20, 2013, at 14:11:50
In reply to Re: World not better off because I'm here, posted by Jeroen on December 20, 2013, at 4:15:23
> ever tried minocycline for negative symptoms ?
> or glycine supplement with the abilify?Hi Jeroen,
I have tried glycine with Abilify, and my response was similar to the responses I've had with a lot of supplements: a short-lived response (mostly in my energy and concentration, if I'm recalling correctly) followed by seemingly nothing. I forget what dose I tried, but wonder if taking more than what I took last time might do something different. Or maybe without Abilify? It's something to ponder.
As far as minocycline is concerned, I've yet to try it. I suppose it might be a matter of getting the nerve to ask my psychiatrist about it, but he doesn't seem to like to think outside of the psych med box.
Anyway, thank you for your suggestions. I hope that you're doing ok.
Tomatheus
Posted by Tomatheus on December 20, 2013, at 14:47:25
In reply to Re: World not better off because I'm here » Tomatheus, posted by SLS on December 20, 2013, at 7:22:52
Hi Scott,
Thank you for your reply. I do regret that the subject line of my post evoked the kind of response in you that it did. I think that sometimes I need to be more mindful of what effect what I write might have on others when I express my frustrations online.
But yes, I am frustrated. I have no regrets about saying this.
I also want to say that what I was trying to express by saying that the world isn't better off because I'm here wasn't that don't ever make any positive contributions whatsoever to the world. Instead, what I was trying to convey was that the amount of harm that I to seems to outweigh the good that I do. I do think that saying that my years on Abilify have been a "complete waste" was an exaggeration, and I'm sorry that I exaggerated as I did with that statement. I suppose a better way to have expressed what I said would be to say that my years on Abilify have been largely unproductive.
I would like to say that I still do my best to make a positive impact in others' lives, but honestly, I feel like the extent to which I'm able to do this is quite compromised. That's not to say that I never do any good. I would like to say that I do, both online and in person. But the feedback that I get from those around me seems to indicate that I'm mostly a drain on everyone and that I'm just not trying to live up to my potential. I don't so much get that kind of feedback from people online, but those of you who "know" me online can only see what I write and not everything that I do, or perhaps more importantly, don't do.
Even though you may not have read my entire post, I'm thankful that you decided to reply and get me thinking about some of the things that I wrote. As always, I value what you have to say, and I look forward to any more replies that you may write.
Tomatheus
Posted by Tomatheus on December 20, 2013, at 14:58:59
In reply to Re: World not better off because I'm here » Tomatheus, posted by Phillipa on December 20, 2013, at 8:56:11
Hi Phillipa,
Thank you for your kind reply. Yeah, I don't think that my problems with concentration and overall cognition show so much in my writing. And actually, I wouldn't say that with the supplement that I'm currently taking (pterostilbene) that my ability to concentrate on what I read is really compromised that much right now. Unfortunately, I still can't seem to grasp complexity in the same way I used to be able to before the onset of my psychosis, and I still have problems following what others say in conversations.
But anyway, I appreciate all of your compliments, and I like your suggestion about writing a book. It is something that I think about from time to time and is something that I might have started doing if every supplement that I've tried up to this point along with my Abilify hadn't seemingly stopped working. Then again, my current supplement hasn't completely stopped working, so maybe there's hope that I'll find it beneficial in the long run.
Thanks again for writing what you did. I appreciate it.
Tomatheus
Posted by sigismund on December 20, 2013, at 17:32:55
In reply to Re: World not better off because I'm here » Phillipa, posted by Tomatheus on December 20, 2013, at 14:58:59
Hey, I'm curious about the supplement that helps.
Posted by Tomatheus on December 20, 2013, at 17:41:40
In reply to Re: World not better off because I'm here » Tomatheus, posted by sigismund on December 20, 2013, at 17:32:55
It's pterostilbene. At the moment, it seems to be helping with my energy and concentration, but not so much with my hypersomnia. It did seem to help with my hypersomnia initially, though, and the fact that it isn't anymore isn't very encouraging, in my opinion. On the negative side, I have noticed a slight increase in my agitation since starting the supplement, as well as a slight increase in some of my "positive" psychotic symptoms.
Is there anything else you'd like to know about this supplement?
Tomatheus
Posted by sigismund on December 20, 2013, at 19:16:52
In reply to Re: World not better off because I'm here » sigismund, posted by Tomatheus on December 20, 2013, at 17:41:40
That's got something to do with what is in blueberries? Maybe not? I was thinking of taking it some time back.
There should be heaps of things that might help hypersomnia, though most would wreck your sleep? You probably know them all.
Being courteous and kind (as you are) counts for a lot in my book.
Posted by Tomatheus on December 20, 2013, at 22:01:37
In reply to Re: World not better off because I'm here » Tomatheus, posted by sigismund on December 20, 2013, at 19:16:52
Hi Sigismund,
Yes, if my understanding is correct, pterostilbene is found in blueberries. Grapes too, I think. It may have the capacity to reduce neutrophils (a type of white blood cell), which is one reason why I'm taking it.
Yeah, I think that going overboard with any supplement that might help hypersomnia would wreck my sleep. Of course, if I could get around eight hours without having too much trouble falling asleep and without waking up too often during the night, I'd probably be more or less satisfied, as far as my sleep is concerned. As with anything else, I think that tinkering with one's sleep has to be done in a balanced way so that one doesn't go too far in either direction.
I doubt that I know of every supplement that might be beneficial for those who struggle with hypersomnia, but I probably know and have tried many of them. If you could maybe tell me some of the first of these supplements that might come to mind, I would very much appreciate it. I do think that at this point, though, that if taking pterostilbene with Abilify doesn't keep exerting at least some positive benefits in the long run that adding other supplements to the medication isn't going to be likely to help. I can only keep doing what's basically the same thing for so long before realizing that doing more of the same isn't going to produce different results. However, trying more supplements without Abilify (if my current strategy with pterostilbene doesn't work out in the long run and I do successfully taper off of Abilify) might prove to be beneficial.
Finally, I appreciate your saying that I'm courteous and kind. It's good to know that I at least come across that way to you in my writing and that those qualities seem to count for something.
Tomatheus
Posted by sigismund on December 21, 2013, at 0:25:13
In reply to Re: World not better off because I'm here » sigismund, posted by Tomatheus on December 20, 2013, at 22:01:37
Some of the supplements that I have felt aggravated my insomnia.
Resveretrol
Rhodiola
Deprenyl
Hydergine
Cognitex (dunno what exactly in that)
and many others.Do you think of the high WBC count as indicating inflammation? I dunno, leukotrenes, all of those things with weird names like tumour necrosis alpha or whatever?
Posted by Tomatheus on December 21, 2013, at 0:47:59
In reply to Re: World not better off because I'm here » Tomatheus, posted by sigismund on December 21, 2013, at 0:25:13
Sigismund,
Thank you for the list. I've tried all that you listed, except for Cognitex. I'll have to take a look at that one.
I think it's possible that my elevated white blood cell count could be some sort of inflammatory marker. My chronic fatigue and hypersomnia were actually preceded by a period of prolonged partial sleep deprivation, and there seems to be some evidence that sleep deprivation can raise white blood cells. Then again, I don't know for sure that the sleep deprivation actually brought on my chronic fatigue and hypersomnia or if those symptoms just so happened to surface right after my period of prolonged partial sleep deprivation. And even though I know that my white blood cells are elevated, I don't know for sure that it's the sleep deprivation that caused the blood-cell elevation.
So, I don't know. Maybe the elevated white blood cells could be a marker for some sort of inflammation that's going on, perhaps something that was caused by the prolonged partial sleep deprivation. Or maybe I just have an infection. I suppose it wouldn't hurt to get a general practitioner's opinion.
Tomatheus
Posted by Roslynn on December 21, 2013, at 11:15:43
In reply to World not better off because I'm here, posted by Tomatheus on December 19, 2013, at 23:45:02
Tomatheus, you are a thoughtful person and a great writer. I remember one of your responses to a question I posted blew me away in its detail and in the kindness that came through your words. So, thank you and know that you have made a difference in at least one corner of the world.
Posted by Tomatheus on December 21, 2013, at 12:25:32
In reply to Re: World not better off because I'm here, posted by Roslynn on December 21, 2013, at 11:15:43
Thank you, Roslynn. Your post in much appreciated.
Tomatheus
Posted by Phillipa on December 21, 2013, at 18:47:10
In reply to Re: World not better off because I'm here » sigismund, posted by Tomatheus on December 21, 2013, at 0:47:59
Definitely get a doctors opinion as high white count is indicative of many illnesses Phillipa
Posted by joe schmoe on December 22, 2013, at 9:46:35
In reply to World not better off because I'm here, posted by Tomatheus on December 19, 2013, at 23:45:02
> If I stay on Abilify, my remaining years are likely to be at best not much different from the past five years that I've spent taking the medication, which I've already described as a complete waste.
You never know what's around the corner, man. Like this, which I noticed in yesterday's news:Study confirms narcolepsy as an autoimmune disease
http://www.medicalnewstoday.com/articles/270481.php
You could wake up one day and suddenly there is a treatment available that wasn't available yesterday.
Sometimes it takes a lot of courage to just keep plodding forward one step at a time through the sandstorm, unable to see what you are moving towards. It could be just be ten feet away and you can't see it from where you are.
Posted by Tomatheus on December 22, 2013, at 12:59:48
In reply to Re: World not better off because I'm here » Tomatheus, posted by joe schmoe on December 22, 2013, at 9:46:35
Joe Schmoe,
You make a very good point. I don't know what the future holds, especially as far as new treatments are concerned. The point that I was trying to make with respect to Abilify was that if I keep sticking to the same treatment that the results aren't likely to be much better than they have been during the first five-plus years that I spent utilizing the treatment in question. But yes, better treatments might one day become available. Or maybe some adjustment to my treatment regimen might do something truly beneficial. The pterostilbene that I'm taking, though it hasn't done anything significant for my overall cognition, has been effective for my energy and concentration, at least at times, and might conceivably be something that I'd want to stick with in the long run. That's assuming that it doesn't seem to stop working, like so much of what I've taken. But anyway, I think you're right that as far as finding a treatment that works in the long run for my energy, concentration, and hypersomnia is concerned that I might eventually find something after many, many failed trials.
Tomatheus
Posted by sigismund on December 22, 2013, at 14:06:30
In reply to Re: World not better off because I'm here » sigismund, posted by Tomatheus on December 21, 2013, at 0:47:59
Also causing insomnia
r alpha lipoic acid
astaxanthin
goji berries (in excess)
D3
and I think
Glisodin, which boosted some enzyme.
Posted by Dr. Bob on December 22, 2013, at 22:16:54
In reply to Re: World not better off because I'm here » SLS, posted by Tomatheus on December 20, 2013, at 14:47:25
> I would like to say that I still do my best to make a positive impact in others' lives, but honestly, I feel like the extent to which I'm able to do this is quite compromised. That's not to say that I never do any good. I would like to say that I do, both online and in person. But the feedback that I get from those around me seems to indicate that I'm mostly a drain on everyone and that I'm just not trying to live up to my potential. I don't so much get that kind of feedback from people online, but those of you who "know" me online can only see what I write and not everything that I do, or perhaps more importantly, don't do.
That's interesting, how you get different feedback online and in person. True, we don't know what you don't do in person. But we do know what you don't do here. What if you compare apples and apples?
> I think that sometimes I need to be more mindful of what effect what I write might have on others
I assume you didn't mean the above this way, but is it possible you might not appreciate the extent to which what you write has a positive impact on others?
Bob
Posted by Tomatheus on December 23, 2013, at 0:45:22
In reply to Re: World not better off because I'm here » Tomatheus, posted by sigismund on December 22, 2013, at 14:06:30
Thanks, Sigismund. I have tried all of the supplements that you listed in your last post, and I recall experiencing some temporary benefits from most of them. Maybe I'll look into the Cognitex that you listed in your earlier post to this thread.
Tomatheus
Posted by Tomatheus on December 23, 2013, at 1:20:46
In reply to Re: Babble better off because you're here » Tomatheus, posted by Dr. Bob on December 22, 2013, at 22:16:54
Dr. Bob,
Thank you for responding to my post and for writing what you wrote in the subject line to your post. It does mean a lot to have you say that Babble is better off because I'm here.
I think that your question as to whether I appreciate the extent to which what I write has a positive impact on others is a good one. The positive impact that my writing might have on others is something that I probably don't appreciate as fully as I should. I do like to hope that what I write here on Babble affects others in a positive way, and judging from the responses I've received to this thread so far, it seems that my writing does have a positive impact.
Perhaps it would be accurate to say that in some areas of my life, I do some good, which very well might outweigh the things I do that don't have such a good impact. I guess it's easy to get overwhelmed thinking about all of the resources I use up to survive and to assume that the good that I do doesn't seem to stack up. At the very least, perhaps I just don't know the extent to which the good things that I do both online and in person positively affect others. I could very well not be appreciating this as much as I probably could. Maybe I need to challenge my assumptions more.
Tomatheus
Posted by sigismund on December 23, 2013, at 1:40:37
In reply to Re: Babble better off because you're here » Dr. Bob, posted by Tomatheus on December 23, 2013, at 1:20:46
> I guess it's easy to get overwhelmed thinking about all of the resources I use up to survive and to assume that the good that I do doesn't seem to stack up.
Might be true of many of us, especially in the western world.
Posted by alexandra_k on December 23, 2013, at 2:30:45
In reply to Re: Babble better off because you're here, posted by sigismund on December 23, 2013, at 1:40:37
> > I guess it's easy to get overwhelmed thinking about all of the resources I use up to survive and to assume that the good that I do doesn't seem to stack up.
>
> Might be true of many of us, especially in the western world.yeah.
those of us with social conscience... wait... tragedy of the something...
Posted by brynb on January 2, 2014, at 16:06:12
In reply to Re: World not better off because I'm here » SLS, posted by Tomatheus on December 20, 2013, at 14:47:25
hi Tomatheus-
from reading many of your posts, you should know this community would certainly not be better off without you!
I was compelled to respond due to what I just wrote above, but also because my family does the exact same thing to me. sometimes they are okay with me, but mostly I'm accused of not doing enough or pushing myself hard enough. I've sought out and tried many different doctors, therapies, meds, etc. I'm in an ok place now, but I like to think that my own research and attempts at getting well took A LOT of motivation and effort. After not being able to hold down a consistent job the past few years, I'm now on disability (and get help from my family). it seemed (and has been) practical. Can I do more and push myself harder? Yes. Is it sometimes seemingly impossible? Almost always.
I hope today is a better one for you :). Happy New Year.
-b
Posted by Tomatheus on January 2, 2014, at 18:44:32
In reply to Re: World not better off because I'm here, posted by brynb on January 2, 2014, at 16:06:12
Thank you, Brynb, for your response. I think that a comment that one of my family members made was a major factor that basically led up to the post that I made at the start of this thread, and it hurts to hear comments like what I heard when what I'd really like more than anything else is to engage in more activities that help others and myself. I will say that after writing what I wrote and reading all of the responses that have come in that even though I think that being dissatisfied with what we're doing could possibly motivate us to do more, being too dissatisfied to the point where we're figuratively beating ourselves up isn't very healthy, either. I also think that a lot of the effort that those of us with illnesses that are more or less "invisible" put in to improve our situations oftentimes doesn't go noticed (especially if the illness is also resistant to treatment), and although I can understand why this is the case, it is indeed frustrating for those of us who are trying to push forward and only going so far.
Anyway, I very much appreciate your response. Take care, and I hope that you too will have a happy and healthy (or at least happier and healthier) new year.
Tomatheus
Posted by Cee on January 3, 2014, at 0:20:10
In reply to World not better off because I'm here, posted by Tomatheus on December 19, 2013, at 23:45:02
Big t it is big see
Nardil taken in enteric capsules with a double dose in a cap with magnesium flower and calcium
That will put you back on target
You saved my life with your wisdom hang in there it will get better
Ceeq
Posted by Tomatheus on January 3, 2014, at 0:58:13
In reply to Re: World not better off because I'm here, posted by Cee on January 3, 2014, at 0:20:10
Hi Cee,
Thank you for your message, but I don't know about trying Nardil again at this point. My symptoms are much different than they used to be with my psychosis being a factor, and I'm not sure that I'd experience the same benefits from Nardil with the enteric capsules like I did before. I say this because I used to respond to SAM-e tablets (although my response would fade the longer I stayed on the supplement), which are usually enteric coated, but now to get SAM-e to work, I need to take it sublingually, which I wouldn't recommend mainly because of the way that SAM-e tastes.
So, I don't know about Nardil. It might be worth thinking about trying it again some time, but I tend to think that I wouldn't get the same results with it that I used to if I were to try it now.
Tomatheus
Posted by alexandra_k on January 3, 2014, at 1:18:11
In reply to Re: World not better off because I'm here » Cee, posted by Tomatheus on January 3, 2014, at 0:58:13
http://www.autreat.com/dont_mourn.html
i found this. i'm sorry about the rainbow colors.
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Dr. Bob is Robert Hsiung, MD,
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