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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 4 of 4. This is the beginning of the thread.
Posted by Ant-Rock on May 24, 2000, at 16:31:15
Andrew,
I just wanted to thank you for the Goldstein-web info. I found the information very interesting, if not a little off the wall. Especially the story about a man who after suffering fatigue and atypical depression{symptoms mentioned strongly resembled mine} for many years, got totally better after one dose of neurotin. Could this be possible? Also the use of Naphazoline, which is found in my allergy eye drops! What do you make of this? He seems very credible in many ways, but I was curious what you thought.
Take care,
Anthony
Posted by JohnL on May 25, 2000, at 4:29:37
In reply to Dr. Goldstein'sWeb...AndrewB, posted by Ant-Rock on May 24, 2000, at 16:31:15
> Andrew,
> I just wanted to thank you for the Goldstein-web info. I found the information very interesting, if not a little off the wall. Especially the story about a man who after suffering fatigue and atypical depression{symptoms mentioned strongly resembled mine} for many years, got totally better after one dose of neurotin. Could this be possible?Like I mentioned a few weeks ago, keep your eyes and ears open and you'll see it all over the place...people DO respond dramatically and quickly when the drug happens to match their unique chemistry. I think I've spotted a half dozen or so similar accounts just browsing through threads of the last few weeks. It does happen. It's easy to gloss over them or miss them though if not on the lookout for them.
I think the next question is, "WHY does it happen?" In my opinion, based on the practices of a small minority of phsycians experiencing high rates of success, and based on my own personal trials and errors, these quick dramatic responses point to a superior match between the drug and the patient's unique chemistry. Simple as that. NOT so simple is finding that superior match. :-) Clues from medication responses can help point us in the right direction though.
JohnL
Posted by AndrewB on May 25, 2000, at 8:28:50
In reply to Re: Dr. Goldstein'sWeb...AndrewB, posted by JohnL on May 25, 2000, at 4:29:37
I haven't looked all that deeply into Dr. Goldsteins's background. But there are a few things that make me think he may be legit. For one, a couple of other doctors who are CFIDs specialists quote his work and one refers to him as an important and innovative figure in the field. Beyond this, his methods have received grant funding in order that they can be evaluated for their efficacy. So maybe he is legit.
Dr. Goldstein uses short acting drugs (or drugs in short acting forms) as diagnostics tools to determine dysfunction in targeted receptor systems. For example, amantadine is used as a diagnostic to determine if there is dysfunction in the ketamine or dopamine receptor systems.
Anthony, based on my own experience, I don't have too much trouble believing that neurontin or some other seemingly unlikely drug would make someone with CFS feel suddenly better. Myself, I have basically a hybrid disorder that is in part dysthymia and in part CFS. Heavy exercise brings on quite rapidly in me depression, irritability, muscle and joint pain, fatigue, muddled thinking and (social) anxiety). All these symptoms, except for the muscle and joint pain, are able to be ameliorated in the better part quite rapidly by the D2-D3 dopiminergic agent amisulpride. And indeed, research has shown that fatigue and social phobia are associated with hypofunction of the D2 receptors, and low mood can be caused by D2/D3.
Another drug out there was, like magic, able to take completely all my dysthymia/CFS symptoms. It was the street drug GHB. I bought it over the internet when I read that even though this drug was used to induce a heavy sleep (or in lower doses a drunken feeling), there would be an atypical reaction to GHB if you were a depressive. Instead of making you sleepy, the interent site said, you would feel energized and your depression would disappear. And indeed it did. Believe me, I'm not recommending GHB, it has withdrawal symptoms, induces mania, and has an inappropriatly short half life. My point is, however, that a particular atypical reaction may be expected to occur if there is a certain underlying receptor dysfunction. This seems to be what is occurring with that patient's atypical reaction to neurontin.
I have located a copy of Goldstein's book in the local library system and I am eager to take a closer look at what he has to say and hopefully come away with a greater understanding of the causes and the potential agents of relief for CFS and fibromyalgia.
Posted by Victoria on May 25, 2000, at 21:34:54
In reply to Re: Dr. Goldstein'sWeb...AndrewB, posted by AndrewB on May 25, 2000, at 8:28:50
I saw Dr. Goldstein about a year ago for fibromyalgia, so I thought maybe you'd be interested in my experience. I went for three days, sitting in his cozy waiting room, taking various meds at various intervals the whole time. Nothing really worked very well for me, although half a doxen things seemed to make a tiny improvement. He sent me home with prescriptions for all of them, including one thing I would need to inject, and said I should try them for longer times and in various combinations to see what might ultimately work. I haven't done that. I'm too uncomfortable about taking a bunch of powerful meds without a clear indication that they will work and not cause other problems. (But if I get desperate enough, I might give it a shot in the future.) On the other hand, I had no bad reactions to anything he gave me (and I'm often sensitive and/or allergic to meds) and a few other people seemed to be helped. His fees are reasonable for the amount of time (about $700 for the whole thing) and my insurance paid a big chunk of it. His book made a lot of sense to me when I read it (although I couldn't really follow the technical bits), but I'm more skeptical now since I didn't have the quick, very good reaction that he describes in his case examples.
> I haven't looked all that deeply into Dr. Goldsteins's background. But there are a few things that make me think he may be legit. For one, a couple of other doctors who are CFIDs specialists quote his work and one refers to him as an important and innovative figure in the field. Beyond this, his methods have received grant funding in order that they can be evaluated for their efficacy. So maybe he is legit.
>
> Dr. Goldstein uses short acting drugs (or drugs in short acting forms) as diagnostics tools to determine dysfunction in targeted receptor systems. For example, amantadine is used as a diagnostic to determine if there is dysfunction in the ketamine or dopamine receptor systems.
>
> Anthony, based on my own experience, I don't have too much trouble believing that neurontin or some other seemingly unlikely drug would make someone with CFS feel suddenly better. Myself, I have basically a hybrid disorder that is in part dysthymia and in part CFS. Heavy exercise brings on quite rapidly in me depression, irritability, muscle and joint pain, fatigue, muddled thinking and (social) anxiety). All these symptoms, except for the muscle and joint pain, are able to be ameliorated in the better part quite rapidly by the D2-D3 dopiminergic agent amisulpride. And indeed, research has shown that fatigue and social phobia are associated with hypofunction of the D2 receptors, and low mood can be caused by D2/D3.
>
> Another drug out there was, like magic, able to take completely all my dysthymia/CFS symptoms. It was the street drug GHB. I bought it over the internet when I read that even though this drug was used to induce a heavy sleep (or in lower doses a drunken feeling), there would be an atypical reaction to GHB if you were a depressive. Instead of making you sleepy, the interent site said, you would feel energized and your depression would disappear. And indeed it did. Believe me, I'm not recommending GHB, it has withdrawal symptoms, induces mania, and has an inappropriatly short half life. My point is, however, that a particular atypical reaction may be expected to occur if there is a certain underlying receptor dysfunction. This seems to be what is occurring with that patient's atypical reaction to neurontin.
>
> I have located a copy of Goldstein's book in the local library system and I am eager to take a closer look at what he has to say and hopefully come away with a greater understanding of the causes and the potential agents of relief for CFS and fibromyalgia.
This is the end of the thread.
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