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Old 02-06-2007, 05:28 PM
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Vicc Vicc is offline
In Remembrance
 
Join Date: Nov 2006
Location: SE Kansas.
Posts: 374
15 yr Member
Vicc Vicc is offline
In Remembrance
Vicc's Avatar
 
Join Date: Nov 2006
Location: SE Kansas.
Posts: 374
15 yr Member
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In other places (newspaper and magazine articles; anyplace Robert Schwartzmann can get his name out - and his commercial in), he has claimed 100% success for this German ketamine coma.

The problem is that those of us who were at the BrainTalk Forum at the time remember Kit Delucca: who returned from Germany with no relief whatsoever. So much for 100%. Could there have been, as President Bush might put it, other less successful successes?

Due to almost criminally inadequate medical screening (the failure to obtain a complete medical history - essential when you are trying a dangerous medical experiment on a living human subject), Kit not only returned with the same RSD, but also severe esophogheal damage; the result of laying flat and unconcious for so long. That won't get better either.

The FDA won't allow doc S to try his coma experiment on people in this country, so in order to make money selling ketamine, those newspaper and magazine commercials contain the message that his 5-day outpatient ketamine infusions work pretty well.

According to other Forum members, doc S charges $25,000.00 (cash, check or money order - insurance won't pay for it) for these 5-day outpatient events.

I don't know how much ketamine costs, but veterenarians use it to treat dogs, cats, horses (and maybe even gerbils), so it can't be too expensive. doc S may or may not insert the needle for the infusions (at that price, he should); but after the needle is in you, the most he can do is sit and watch.

That leaves only the outpatient treatment room. If we give the doc the benefit of the doubt and say the combined cost of ketamine and his expertise is $2,500.00 per treatment, that outpatient room better have five-star room service: $2500.00 per day will get you a nice room in Vegas, and you get to stay in it for 24 hours.

There have been wonderful pronouncements about the length of remission following outpatient infusions. In reply to something not nice that I said about them, Mike posted a link to one article that couldn't stop talking about success.

Well, folks, I'm almost 64, and in my old age I have become a really crochety curmudgeon. A bit of a cynic too. I reviewed the article with a touch of skepticism. OK, more than a touch. I can be a real pain in the *** when I want to be, and my comments showed that.

We all pretty much know that that if you're going to get better, you should start trying early. (I have a small problem with this, because I haven't seen any studies showing people with chronic RSD do recover, and nothing about which interventions offer greater hope for that happy event).

I have come to suspect that "getting better" pretty much means the length of remission from sympathetic blocks; and the sooner you get them, the longer the potential relief - if they work at all. Blocks, of course, eventually stop working.

But if there is such a thing as permanent remission from RSD, which suggests a therapy that can lead to such remission, the only documentation I have seen have been individual case studies; only considered somewhat more reliable than anecdotal reports.

Anyway, I read the study Mike wrote about, and I noticed that patients who had RSD less than six months had the really long periods of remission. Amazingly long.

Those patients who had been diagnosed more than three years previous showed more ambiguous results: mainly because someone forgot to do follow-ups on them.

Now, from my research into this disease, I agree with Sudek, Goris, van der Laan and others that the first stage of this disease involves inflammation, and that it can last from three months to several months.

Since researchers have demonstrated that ketamine, lidocaine and bupivacaine (all of which have been infused into RSD patients and provided temporary remission), have antioxidant properties; and oxidants (especially oxygen free radicals), play a central role in inflammation.

It isn't unreasonable to suggest they may be effective against early RSD in this manner. Drugs such as morphine, have no antioxidant effect, nor have they been shown to be effective in temporarily suppressing RSD symptoms.

This isn't proof, of course, but it is an alternative explanation those researchers should have excluded, and science isn't supposed to allow you to "cherry pick". It is a viable alternative, and they chose to ignore it rather than address it.

I don't know how ketamine and these other drugs alter RSD symptoms, but neither do the people who proclaim how wonderful they are. I don't believe their reports of incredibly long-term remissions either. Many of those folks are friends of doc S: if you lie down with dogs, you arise with fleas.

Yup, I believe in guilt by association. Choose your friends wisely or something may come up and bite your ***.

I probably should have kept track of Forum members (here and at BrainTalk) who reported getting ketamine infusions. I recall more complete failures than partical successes, and no remission lasting even a year, but can't swear to it.

Ketamine is a dangerous drug. No one really knows how dangerous, because it has only been FDA approved as an anesthetic, and physicians who use it for off-label research may not be as willing to report adverse reactions resulting from that use.

I do know this: There have been serious breaches in the reporting of "successful" ketamine use in RSD. I also know that Robert Schwartzmann is not quite an honest man. In fact, he may have authored the first outright deceptive article I ever read about this disease.

In that article, he claimed "permanent" relief of RSD symptoms following several sympathectomies. He did it by defining "permanent" as two years; he wrote that 50 years after RSD clinicians began to report that the effects of these procedures rarely lasted much longer than two years.

He didn't exactly lie, but he fell far short of being honest. We expect rigid honesty from scientists, but doc S isn't a scientist: He's a ketamine huckster. I could cite more examples of the divergence between doc S and the truth, but this post is about ketamine.

I don't blame CNN for airing a commercial for doc S; I know they are supposed to have physicians on staff or on call to verify scientific claims, but RSD is one of those hopefully rare disorders in which nearly 100% of the RSD experts are dead wrong. It would be surprising - and a real waste - to learn that CNN had someone who knew what this disease really is. A waste because we need him/her more than CNN does.

I was disappointed with some of their graphics; the ones about the brain. This disease has experts who are deliberately trying to deceive and confuse with claims that this problem is found in the spinal cord. I'm sure it was unintentional, but graphics of the brain in the context of RSD will only further confuse people.

About that particular patient: researchers in several fields are reporting major differences between adults and children; including recoveris from disorders (in many instances, kids get better while adults don't). Stem cell researchers have reported that other cells in children are more malleable than in adults; kinda like stem cell wannabe's. An unscientific way of saying it, but so what?

I hope she stays better for the rest of her life. I think we all feel worse when we learn a child has been cursed with this disease.

Shortly after I began researching this disease, the surgical sympathectomy was finally abandoned. So far as I know, only Kirkpatrick (Medical Chair of RSDSA) write about their continuing usefulness. But all was not bright: it was being replaced by the chemical sympathectomy.

I didn't really understand much about this disease back then, but a chemical sympathectomy sounded pretty stupid to me. I never raised my voice in protest. Not that raising my voice would have stopped anyone; I've been telling people for five years that the antioxidant grape seed extract prevents symptom migration, and feeling utterly impotent every time someone else says it's happening to them.

I knew that Vioxx and others like it would not help RSD patients, but I didn't write any posts saying so. Who knew they would end up killing people?

I don't know whether ketamine will end up killing anyone, or causing permanent brain damage, but I don't like the thought of a girl waking up and not recognizing her parents.

I do know ketamine isn't as effective as it's proponents claim. I do know that ketamine comas aren't 100% successful. I do know that outpatient ketamine infusions don't do what doc S says they do. And I do know that $25,000.00 for an outpatient room and some ketamine is way too pricey.

As I mentioned in another post, doc S is getting older and should think about building up his nest egg. I just don't think he should be dishonest about the way he goes about it...Vic
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