, 00 Mar 0000 00:00:00 +0000http://www.theness.com/neurologicablog/?p=0000#comment-00000Christopher - I am involved with the ALS research community, so this is an area where I am particularly up to date. The information you provide is not new or useful. There are many speculations about possible causes of ALS, and perhaps several will turn out to be correct as ALS is a syndrome made up of several, perhaps many, diseases. Many options are being explored, and generally those of us who treat ALS use the one proven therapy (riluzole) while adding 0-0 experimental treatments either as part of a clinical trial (preferable) or as compassionate use. We use treatments with some rationale and positive evidence and at least evidence of safety, and with full informed consent. But we also study them, and if they fail in clinical trials we stop using them. The clostridium paper was published 0 years ago (and not in a reputable journal) with no follow up research that I can find. This is very problematic, and may reflect the fact that it is a dead end. In any case - this is a naked hypothesis with nothing close to the data we would need to use as a compassionate treatment. Maybe someone is working on a clinical trial somewhere, but if so I have not heard (there is no buzz), but I will ask at the next meeting. Antibiotic and anti-inflammatory approaches to ALS have already been tried and failed in the past. The only antibiotic recently studied for ALS is minocycline, but that was due to its pharmacological non-antibiotic properties. In any case - patients did worse on minocycline than placebo - it had a net negative effect. Which is another cautionary tale against prematurely using experimental treatments - they can do harm, even when the animal and preliminary data looks positive (the same thing happened with topiramate). The bottom line is that you have nothing new to add or any useful treatments beyond what is already being used by neurologists or being studied. Naturopathy has nothing unique to offer.Christopher - I am involved with the ALS research community, so this is an area where I am particularly up to date. The information you provide is not new or useful.  There are many speculations about possible causes of ALS, and perhaps several will turn out to be correct as ALS is a syndrome made up of several, perhaps many, diseases. Many options are being explored, and generally those of us who treat ALS use the one proven therapy (riluzole) while adding 0-0 experimental treatments either as part of a clinical trial (preferable) or as compassionate use. We use treatments with some rationale and positive evidence and at least evidence of safety, and with full informed consent. But we also study them, and if they fail in clinical trials we stop using them.  The clostridium paper was published 0 years ago (and not in a reputable journal) with no follow up research that I can find. This is very problematic, and may reflect the fact that it is a dead end. In any case - this is a naked hypothesis with nothing close to the data we would need to use as a compassionate treatment. Maybe someone is working on a clinical trial somewhere, but if so I have not heard (there is no buzz), but I will ask at the next meeting.  Antibiotic and anti-inflammatory approaches to ALS have already been tried and failed in the past. The only antibiotic recently studied for ALS is minocycline, but that was due to its pharmacological non-antibiotic properties. In any case - patients did worse on minocycline than placebo - it had a net negative effect. Which is another cautionary tale against prematurely using experimental treatments - they can do harm, even when the animal and preliminary data looks positive (the same thing happened with topiramate).  The bottom line is that you have nothing new to add or any useful treatments beyond what is already being used by neurologists or being studied. Naturopathy has nothing unique to offer.  ]]>By: Quackalicioushttp://theness.com/neurologicablog/index.php/homeopaths-on-the-run/comment-page-0/#comment-00000 QuackaliciousSat, 00 Mar 0000 00:00:00 +0000http://www.theness.com/neurologicablog/?p=0000#comment-00000Right. ALS. Nerve degeneration may be genetic (0/0 of cases) but predominantly unknown. Autoimmune, but I tend to keep looking because I don't think autoimmune happens in a vacuum. For other readers, I'm attaching the current status of treatments for ALS to get a sense of what you deal with and other options. But I think I may have something helpful. Turns out your colleagues in Seattle already came across the same idea, but I don't think you're using it yet. It involves Clostridium difficile causing a portion of the ALS cases. I came across this idea when I was researching possible ALS support and I found a small study on stool analysis of ALS patients. About 0/0 had significant Clostridium overgrowth, but I can't find the study on medline listed under Clostridium. I assume the Seattle neurologists must have found the same study. So here's the thought: if a portion of ALS patients (peripheral onset?) are genetically susceptible to the relatively mild Clostridium difficile toxins then a stool analysis would give a possible treatment option: systemic antibiotics and the addition of Sacchromyces boulardii. Previous trials with antibiotics and ALS haven't focused on the possibility of an antibiotic resistant organism causing the problem. I think the addition of S. boulardii is essential to provide competition to C. difficile regrowth. So, trash away. But maybe have a discussion with Seattle about why they have the same crazy, quacky idea I do. If you don't want to put ALS patients through the systemic antibiotics, what about a simple trial of S. boulardii for patients? Keep patients on oral feeding and add S. boulardii with every meal. It has a good safety profile. I've got some other ideas, but I want to get this one out to you quickly. Please at least talk to Seattle about it. 