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Dr. Bob is Robert Hsiung, MD,
[email protected]Shown: posts 1 to 25 of 30. This is the beginning of the thread.
Posted by poser938 on January 11, 2013, at 12:17:54
There are so many treatments. Liki deep TMS. Or deep brain stimulation. Expensive things like that that may be of help to me. I got sick when I was 17 I'm unable to work. Very low on funds. And I am dieing to have access to those treatments. I'm sure there re peoke on this site in a situation like mine. How do others do it?
Posted by poser938 on January 11, 2013, at 12:43:49
In reply to how do others do it?, posted by poser938 on January 11, 2013, at 12:17:54
I ha e tried and I don't qualify for any government insurance. Have applied for disability 7 months ago, and that could still be months away for me to get approved. If I do.
Posted by Phillipa on January 11, 2013, at 17:25:58
In reply to Re: how do others do it?, posted by poser938 on January 11, 2013, at 12:43:49
Are there any studied going on using these treatments that you might be able to apply for? I'm sorry you have to wait for the disability. Don't you also get a check for back pay from the beginning of when you were unable to work?
Posted by poser938 on January 12, 2013, at 12:10:57
In reply to Re: how do others do it? » poser938, posted by Phillipa on January 11, 2013, at 17:25:58
I texted my pdoc and asked for 50mgs. I told her a few times I wanted the lowest dose. But she called in 100mgs. Maybe she knows something I don't know. Maybe she just forgot, she is a very busy doctor.
But I guess I'll be starting out with 100mgs. This makes me a bit more nervous. Also, SLS, do you know the mechanism by which Minocycline can cause depersonalization?
Posted by SLS on January 12, 2013, at 14:55:30
In reply to just filled Minocycline-SLS, posted by poser938 on January 12, 2013, at 12:10:57
> I texted my pdoc and asked for 50mgs. I told her a few times I wanted the lowest dose. But she called in 100mgs. Maybe she knows something I don't know. Maybe she just forgot, she is a very busy doctor.
>
> But I guess I'll be starting out with 100mgs. This makes me a bit more nervous. Also, SLS, do you know the mechanism by which Minocycline can cause depersonalization?Do you know anyone who has experienced this? I think minocycline can produce agitation or activation. Perhaps the derealization is how these things manifest in some people. I don't really know. Can you point me in the direction of the material you saw regarding derealization? Are there any claims that it is irreversible?
For me 100 mg/day was inadequate. 200 mg/day is better. I haven't tried going up higher. Some current studies are using 400 mg/day.
Good luck. Remember, you might feel a little fatigued and perhaps some flat affect in the beginning. In my experience, these things should not linger for more than a week.
- Scott
Posted by Emme_V2 on January 12, 2013, at 16:37:03
In reply to just filled Minocycline-SLS, posted by poser938 on January 12, 2013, at 12:10:57
> I texted my pdoc and asked for 50mgs. I told her a few times I wanted the lowest dose. But she called in 100mgs. Maybe she knows something I don't know. Maybe she just forgot, she is a very busy doctor.
>
> But I guess I'll be starting out with 100mgs. This makes me a bit more nervous. Also, SLS, do you know the mechanism by which Minocycline can cause depersonalization?Poser, the 100 mg capsules are quite easy to deal with if you want 50 mg. Just break open the capsule and dump out the contents onto a saucer. Use a knife to organize the powder and divide it in half. Use a glob of peanut butter to pick up the powder and eat it. Save the other half for the next day. Piece 'o cake.
Good luck.
emme
Posted by poser938 on January 13, 2013, at 12:02:22
In reply to Re: just filled Minocycline-SLS » poser938, posted by Emme_V2 on January 12, 2013, at 16:37:03
Yeah I wish I would have saved the site of one of the experiences I read about. But the guy mentioned he was taking it for acne, yet it made him feel a bit detached. But he liked how well it worked for acne that e kept taking it.
And a few people on askapatient.com reported it making them depressed. And some said loss of interest and depersonalization (which is what I already have thanks to past meds) I'm just nervous because it seems when a med changes what I believe is called 'neuroplasticity' it stays that way after stopping it. For good or for worse.
Anyway, another guy reported that Minocycline did away with any effect of adderall when taken together. But Minocycline on its own actually helped his anhedonia. So it was as if it normalized his dopamine, keeping it from being increased from adderall yet heping when taken by itself. This might be related to how it makes some feel anhedonia.
Posted by poser938 on January 13, 2013, at 12:09:00
In reply to Re: just filled Minocycline-SLS, posted by poser938 on January 13, 2013, at 12:02:22
But yes there are many cases of it helping depression
> Yeah I wish I would have saved the site of one of the experiences I read about. But the guy mentioned he was taking it for acne, yet it made him feel a bit detached. But he liked how well it worked for acne that e kept taking it.
>
> And a few people on askapatient.com reported it making them depressed. And some said loss of interest and depersonalization (which is what I already have thanks to past meds) I'm just nervous because it seems when a med changes what I believe is called 'neuroplasticity' it stays that way after stopping it. For good or for worse.
>
> Anyway, another guy reported that Minocycline did away with any effect of adderall when taken together. But Minocycline on its own actually helped his anhedonia. So it was as if it normalized his dopamine, keeping it from being increased from adderall yet heping when taken by itself. This might be related to how it makes some feel anhedonia.
Posted by jono_in_adelaide on January 13, 2013, at 17:20:17
In reply to Re: just filled Minocycline-SLS, posted by poser938 on January 13, 2013, at 12:09:00
Poster, dont over google it, or over anylise it - the fact one person had depersonalisation out of litteraly millions of minocycline scripts over the past 40 years means nothing. If you read up on all the side effects, power of suggestion seems to make you start imagining some of them.
The main thing to look out for with minocycline is blured vision/chronic headache (benign intercranial hypertension) - if that happens, stop taking it and call your doctor right away.
Posted by Phillipa on January 13, 2013, at 20:03:43
In reply to Re: just filled Minocycline-SLS, posted by jono_in_adelaide on January 13, 2013, at 17:20:17
I got dizzy and headaches after three doses of it so the doc prescribed two topical lotions for the perioral dermatititis which worked. Phillipa
Posted by poser938 on January 13, 2013, at 21:19:57
In reply to Re: just filled Minocycline-SLS, posted by jono_in_adelaide on January 13, 2013, at 17:20:17
> Poster, dont over google it, or over anylise it - the fact one person had depersonalisation out of litteraly millions of minocycline scripts over the past 40 years means nothing. If you read up on all the side effects, power of suggestion seems to make you start imagining some of them.
>
> The main thing to look out for with minocycline is blured vision/chronic headache (benign intercranial hypertension) - if that happens, stop taking it and call your doctor right away.
>I've learned my lesson from not reading into things. I'm in the situation I'm in by not reading past the manufacturers information.
My brain is in a VERY delicate situation and I have to be careful. I had viral encephalitis in 2001, and if you know anything about it, it can cause medications to affect you in some unredictable ways and make you more susceptible to severe side effects from the lasting effects encephalitis can have on the brain.
But I'm looking at the bright side with minocycline and Im going to take it.
Data suggest that cytokines released during the inflammatory response target subcortical structures including the basal ganglia as well as dopamine function to acutely induce behavioral changes that support fighting infection and wound healing. However, chronic inflammation and exposure to inflammatory cytokines appears to lead to persisting alterations in the basal ganglia and dopamine function reflected by anhedonia, fatigue, and psychomotor slowing. Moreover, reduced neural responses to hedonic reward, decreased dopamine metabolites in the cerebrospinal fluid and increased presynaptic dopamine uptake and decreased turnover have been described. This multiplicity of changes in the basal ganglia and dopamine function suggest fundamental effects of inflammatory cytokines on dopamine synthesis, packaging, release and/or reuptake, which may sabotage and circumvent the efficacy of current treatment approaches. Thus, examination of the mechanisms by which cytokines alter the basal ganglia and dopamine function will yield novel insights into the treatment of cytokine-induced behavioral changes and inflammatory malaise.
I like this study. It seems relevant to my situation. I just feel bad for many of the users on this site receiving innacurate information from some on this site. Nothing I can do I suppose. I haven't been on this site nearly as long as some and don't have as good reputation. And I'm not the most knowledgeable, but I only state information I know much about. And much of it is facts.
Posted by SLS on January 13, 2013, at 21:22:26
In reply to Re: just filled Minocycline-SLS » jono_in_adelaide, posted by Phillipa on January 13, 2013, at 20:03:43
It is possible that you needed to start at a lower dosage. I do know someone for whom 100 mg/day was too much to start with. This person experienced anxiety and agitation at first. I experienced dizziness. Perhaps it would be instructive to think of minocycline as a psychotropic that just happens to have antibiotic properties - just as amantadine can be considered to be an antiparkinsonian with antiviral properties. Remember, iproniazid was an antitubercular agent before it was discovered to be a psychotropic as well. If you do decide to try minocycline, perhaps you can start at 50 mg/day.
I have no reason to believe that minocycline would help you. However, I have no reason to believe that it wouldn't.
Because anxiety is a major component of your condition, you might want to consider prazosin if you are looking for an unconventional, but otherwise benign treatment. Prazosin is a drug that you must start at 1 mg/day given at night to avoid dizziness. I currently take 15 mg/day as 5 mg t.i.d.
- Scott
Posted by SLS on January 13, 2013, at 21:28:59
In reply to Re: just filled Minocycline-SLS, posted by poser938 on January 13, 2013, at 21:19:57
Thanks for posting this.
Can you suggest a source of information describing these things? Fascinating.
- Scott
> Data suggest that cytokines released during the inflammatory response target subcortical structures including the basal ganglia as well as dopamine function to acutely induce behavioral changes that support fighting infection and wound healing. However, chronic inflammation and exposure to inflammatory cytokines appears to lead to persisting alterations in the basal ganglia and dopamine function reflected by anhedonia, fatigue, and psychomotor slowing. Moreover, reduced neural responses to hedonic reward, decreased dopamine metabolites in the cerebrospinal fluid and increased presynaptic dopamine uptake and decreased turnover have been described. This multiplicity of changes in the basal ganglia and dopamine function suggest fundamental effects of inflammatory cytokines on dopamine synthesis, packaging, release and/or reuptake, which may sabotage and circumvent the efficacy of current treatment approaches. Thus, examination of the mechanisms by which cytokines alter the basal ganglia and dopamine function will yield novel insights into the treatment of cytokine-induced behavioral changes and inflammatory malaise.
Posted by poser938 on January 13, 2013, at 21:35:39
In reply to Re: just filled Minocycline-SLS, posted by poser938 on January 13, 2013, at 21:19:57
And yes, there is much speculation on my part about some things too. But I only give my opinion after very detailed research. And after living with these severe side effects and learning from this.
Posted by Emme_V2 on January 13, 2013, at 21:55:22
In reply to Re: just filled Minocycline-SLS, posted by poser938 on January 13, 2013, at 21:35:39
Chiming in on the minocycline here. Minocycline has really been good. I've been having depression breakthrough, however, because I've been trying to get off of Abilify. I just went up on minocycline from 50 mg to 75. It's only been a few days, but I'm already seeing an improvement, which should allow me to keep my dose of Abilify very low and perhaps even try again to stop it completely. We'll see what the next couple of weeks brings.
Posted by poser938 on January 13, 2013, at 22:11:30
In reply to Re: just filled Minocycline-SLS » poser938, posted by SLS on January 13, 2013, at 21:28:59
Thanks for the Prazosin suggestion. I have considered it in the past but forgot all about it. I'll probably have it as the next thing for me to try.
But Minocycline looks on paper like it might be a huge help to me. Considering my problem my past brain infection. I was in a coma for 5 days and the doc told my parents they would know within 5 days if I would live or not.But that's some intense brain inflamation.
Posted by SLS on January 13, 2013, at 22:23:39
In reply to Re: just filled Minocycline-SLS, posted by poser938 on January 13, 2013, at 22:11:30
> Thanks for the Prazosin suggestion. I have considered it in the past but forgot all about it. I'll probably have it as the next thing for me to try.
> But Minocycline looks on paper like it might be a huge help to me. Considering my problem my past brain infection. I was in a coma for 5 days and the doc told my parents they would know within 5 days if I would live or not.
>
> But that's some intense brain inflamation.From what I understand, the onset of therapeutic antidepressant activity for minocycline can be quite gradual. It might take several months before you see a significant improvement. As for me, I can't see full remission happening for at least another six months. However, I am very pleased with the way I have been feeling. I did see some improvement during the first week.
I wish you luck.
- Scott
Posted by jono_in_adelaide on January 13, 2013, at 22:30:16
In reply to Re: just filled Minocycline-SLS » poser938, posted by SLS on January 13, 2013, at 22:23:39
Next step will be for some enterprising scientists to seperate out the antibacterial activity of minocycline from the psychotrophic activity.
Posted by poser938 on January 13, 2013, at 22:33:33
In reply to Re: just filled Minocycline-SLS » poser938, posted by SLS on January 13, 2013, at 22:23:39
Thanks. Know it may take some time. It seems this medication can actually be involved in healing, instead of just covering up a problem.
Oh and I want to thank the Emme for suggesting to open the capsule and pour some out. That's what I'm going to do.
Posted by Phillipa on January 13, 2013, at 23:03:17
In reply to Re: just filled Minocycline-SLS » Phillipa, posted by SLS on January 13, 2013, at 21:22:26
Scott I have the 75mg capsules. Since I still test positive without typical symptoms for lymes and the infection control doc had given me ll refills for doxycycline I figure the minocycline might help this. With the three doses I took I did notice a difference with stool. Won't go into that but was for the best. The reason the doxy wasn't given for the skin was because summer and sunburn risk which had before with out actively being in sun. Since to product information says do not take with dairy or calcium and I take calcium/Magnesium twice a day what happens if take mino before the time is up? As the synthroid also has to be taken without any food. Would that make the dose of mino less? Thanks? As I don't want the expiration date to come without trying it. The doxy had to be discontinued for another antibiotic at the time. Phillipa
Posted by poser938 on January 14, 2013, at 17:09:06
In reply to Re: just filled Minocycline-SLS » SLS, posted by Phillipa on January 13, 2013, at 23:03:17
Took my 1st dose last night. Roughly 50mgs. Didn't feel anything from it. Going to take the 100mgs tonight.
Posted by Phillipa on January 14, 2013, at 21:02:07
In reply to Re: just filled Minocycline-SLS, posted by poser938 on January 14, 2013, at 17:09:06
Poser seriously considering taking the 75mg dose tonight. It was after 3 doses that I got a headache. I'm wondering if it might help with the still positive titer for lymes? Best of luck and sure hope it helps you. Phillipa
Posted by poser938 on January 16, 2013, at 18:41:11
In reply to Re: just filled Minocycline-SLS » poser938, posted by Phillipa on January 14, 2013, at 21:02:07
> Poser seriously considering taking the 75mg dose tonight. It was after 3 doses that I got a headache. I'm wondering if it might help with the still positive titer for lymes? Best of luck and sure hope it helps you. Phillipa
Earlier I took my 2nd dose of 100mgs. Still no effect or side effect. I'm probasbly going to give it 2 months tho.
Jusdt going to maake sure I check my teeth for discolaration regularly. I
Posted by Phillipa on January 16, 2013, at 21:33:02
In reply to Re: just filled Minocycline-SLS, posted by poser938 on January 16, 2013, at 18:41:11
Poser good keep posting as I said third dose. Don't take with any foods with calcium or supplements Phillipa
Posted by SLS on January 17, 2013, at 4:17:41
In reply to Re: just filled Minocycline-SLS, posted by poser938 on January 16, 2013, at 18:41:11
> > Poser seriously considering taking the 75mg dose tonight. It was after 3 doses that I got a headache. I'm wondering if it might help with the still positive titer for lymes? Best of luck and sure hope it helps you. Phillipa
>
> Earlier I took my 2nd dose of 100mgs. Still no effect or side effect. I'm probasbly going to give it 2 months tho.
> Jusdt going to maake sure I check my teeth for discolaration regularly.I would go at least 4 months with minocycline, as long as you are tolerating it well. 200 mg/day seems to be the dosage that is most often chosen in clinical trials (100 - 400 mg/day). To reiterate, the folks at Harvard / Mass General have seen people need as long as a year to reach full remission. This might be what one would expect if long-term reduction in inflammation is an important mechanism. In my experience, I felt a perceptible improvement in the first week. Over the last 4 months, I have been improving gradually. The improvement is not smooth, though. It is more like a saw-tooth pattern: up 2, back 1, up 2, back 1, up 2, etc. I had reached a level of perhaps 40% improved two days ago. Yesterday was a "recession". I felt pretty crappy, but not nearly as severely ill as my baseline depression. First thing this morning, I am recovering.
I wonder if there is an interplay between inflammation and hyperglutamatergic activity such that minocycline must reduce these two functional states simultaneously; all the while protecting against neurotoxicity and encouraging neurogenesis.
------------------------------------------------------
Minocycline:1. Is neuroprotective.
2. Reduces brain inflammation
3. Reduces the number of glutamate receptors.
4. Demonstrates antidepressant properties in mouse models of depression.
5. Is reported to act synergistically with noradrenergic antidepressants to treat depression - desipramine (but not fluoxetine).
6. Is reported to act synergistically with NMDA antagonists.
7. Reduces glutamate excitotoxicity by reducing the formation of quinolic acid, a NMDA agonist.
8. Reduces mitochondrial release of cytochrome C.
9. Modulates several signaling pathways.
10. Reduces microglial activation.
11. Has been reported anecdotally to successively treat depression.
12. Reduces the expression of lipopolysaccharide-induced pro-inflammation cytokines, an effect that acts as an antidepressant in animal models.
13. Increases neurite growth in response to nerve growth factor (NGF).
14. Inhibits high levels of PKC and GSK-3 alpha;
15. Decreases nitric oxide synthetase, thereby reducing free radicals which damage neurons and glia.
16. Reduces glutamate release.------------------------------------------------------
- Scott
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Dr. Bob is Robert Hsiung, MD,
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