Dr. Phelps wrote this for the benefit of the readers here to update us on what is new and happening ..and there is some incredibly hopeful and exciting news! Here it is, briefer than he wanted it to be!
1. First, John Kelsoe of UCSD reported some new data that shows the search for "the gene" is farther along than even he would have hoped (he's one of the main wheels) until recently. What's clear is that they are not looking for a single gene, but rather several, or even many. But one of them, a gene involved in the dopamine system, is now very strongly implicated. Lo and behold, it is the same gene that has been implicated in schizophrenia (! -- what we have always worked to distinguish may not be so different after all?). His website gives no details; I will be back soon to write up what he's reported so far in as plain English as possible. But, in the interim, folks should know that they may actually be able to participate in this research. You just donate some time talking to a researcher, and give one blood sample. You need to have an affected brother or sister to fit into the current research program. Contact them through their research website.
2. One of the participants in this conference where Dr. Kelsoe was speaking was from Canada. Having heard me ask a question about treatment, she walked up and said "have you heard the pig feed story yet?" It turns out that there was a farmer in Canada whose wife had bipolar disorder, as well as 4 of their 10 kids. Unfortunately, she committed suicide. After this, a neighbor farmer apparently told the father that when his animals seemed to act like these surviving kids with bipolar disorder acted sometimes, he would add a certain food supplement to their diet, and that would seem to bring them back to their usual selves.
So, the father of these 4 kids proceeded to give his kids this food supplement also (my apologies to anyone who knows the real story, if I've got something wrong here; this is how it was reported to me). And they all seemed to get back to their usual selves. And apparently this was more than three years ago, because just yesterday I talked to Dr. Kaplan, the research Ph.D. who's the leader of a team of research doctors studying this food supplement, who told me some of her experiences watching people take this stuff for bipolar symptoms over three years.
People are getting so much better they are able to stop all of their usual medications. Ok, everybody, hold on now, remember this stuff has not been studied compared to a placebo. Dr. Kaplan's group is in the middle of such a study. It started this past July. They have no data to report yet about how the supplement is working compared to placebo (although they did report 10 cases at the Canadian Psychiatric Association meeting last month; that means they are ready to expose themselves to a very skeptical group of psychiatrists, which means they must be pretty confident they are really seeing something greater than placebo).
At this stage the most important question is, "how dangerous could this be?" The manufacturer is distributing through a group organized by the original family who used the supplement (how to contact them in just a moment). I spoke with one of the sons in that family, who says that they have helped about 1000 people access this stuff. So far they are not hearing any reports of anything dangerous except -- and Dr. Kaplan immediately underlined this as soon as I spoke with her -- that people need to be prepared to work very closely with their physician to coordinate the reduction of their current medications. Some people have gotten very sick, one just hospitalized, because (this is the research team's explanation) they didn't reduce their current medications quick enough. However, this team also emphasizes the risk of just reducing one's medications too quickly, and there is definite risk from doing this. People investigating this product must be prepared to report to their provider that they are going to start this stuff: in a few days things can start happening that require daily supervision!
Ok, with these cautions, you're on your own from here. Let me emphasize that this is completely unexplored territory. No one knows yet whether this stuff "really" works, or how it can be combined with conventional medications, or how to make the transition onto this new stuff. There is some experience with all these questions, but no clear guide based on years of experience. Dr. Kaplan's group probably is the closest to such status, and they too emphasize that this is not "research tested" yet; that is underway, but not ready for reporting, and they do have some bad experiences to share. However, I must admit, that based on the number of people having apparently tried it so far, it's looking pretty good, as far as the "safety" question goes.
That's the news, really: the safety question is looking good so far. I would not consider using this for any of my patients yet, except those who have tried virtually all the known "mood stabilizers" (lithium; Depakote; carbamazepine and its new cousins oxcarbazepine; lamotrigine; topiramate; and Zyprexa), in combinations up to three at a time. That takes a long time, to run through all those combinations. But for folks who've had all that and are still struggling, especially if they are unsafe because of their symptoms, I'm ready to try this stuff. I have one such patient, out of hundreds.
Ok, I hope I've got you hoping but cautious. You're probably hoping big
time, and you should try to make sure your caution rises to match: big time
caution. Here's the website, and
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