Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Andy Would you recommend using the glutathione by itself? Would it be beneficial for a child undergoing chelation and that is glutathione deficient? Thanks in advance. > > Andy, > > > > I appreciate your responding to my question about TTFD, though I admit I was surprised by it. I am certainly no expert about these matters, which is why I posted in the first place. I can use all the info I can get. In that spirit, it would be helpful if you could give us some background upon which you have these strong opinions about TTFD and our DAN doctor's competence. > > > > Why do you feel that TTFD is " inappropriate and dangerous " ? > > The reported adverse reaction rate is 20%. An adverse reaction is a > severe problem that leads to at least long term serious worsening and > often requires further medical attention. > > TTFD does not remove any heavy metals. The paper by Lonsdale is > conclusive on this. His words say it does, but his data says it does > not. There is no chemical reason one would expect it to either. I > also went to the trouble to wheedle a lot of people out of test results > with and without TTFD to double check thins, and the tests that lots of > people did also showed TTFD does not increase heavy metal clearance. > > >Is your concern about the TTFD, > > Yes. > > > or the MB-12, > > There is some concern about the m-b-12, but less. It is true that there > are frequent adverse reactions to this, but there are also frequent > substantial improvements, and it is addressing a condition that is > reasonably believed to have the potential to cause permanent, > irreversible damage if not treated in a timely manner. Also the adverse > reaction is a few months of agitated anger with no motivation. This is > not very serious for a small child. Once they are big enough to be > physically dangerous to adult caretakers it is an entirely different > matter. > > >or both? Do you have concerns about the DAN movement in general? > > Yes and no. > > The people in charge of coming up with their protocol are laughably > incompetent to design any such thing, however they are mostly very > motivated, really DO want to figure out how to help, and in an overall > sense of promoting the idea that autism is biomedical and should be > treated they are doing a wonderful public service. > > Really my only issue with DAN! is a small subset of their protocol that > is technically indefensible, dangerous, harmful, and not based on > scientific reality. > > The fairly large part of their protocol that is either derived by > logical extension of mainstream MD medicine, or is health care > developed by other kinds of doctors, are just fine. > > Unfortunately for cultural reasons some of the DAN! doctors are upset > that I don't agree with them on 10% of the protocol rather than being > happy I do agree with them on the other 90%. > > > In Children with Starving Brains, Jaquelyn McCandless discusses the use of TTFD with her patients, and calls it " benign and beneficial and a welcome addition " as a treatment option for autistic kids. > > I don't think that is her patient experience - at least that is not > what some of the parents tell me. > > It is also a cultural thing in MD medicine to not report on the side > effects, adverse reactions, and other problems. The mainstream guys > invented this bad habit, it is nothing special to DAN! > > > p. 267. She states that " it appears that those children who can tolerate the glutathione especially benefit from the combination of GSH [glutathione] with TTFD. " > > Nope. > > >p. 267. She further states that " the positive effects I am noting with this treatment trio of injectable Vitamin B12, transdermal TTFD and transdermal glutathione (GSH) are impressive and exciting. " p. 275. > > For some people. Others get really messed up by it. Most of those > stop paying to go back and argue with her that their kid isn't doing > well on the treatment, and go find a doctor who offers a different > treatment. Soon all doctors have a clinci full of patients doing > marvelously on their pet treatment. This does NOT mean every person on > the street will do well on every one of those treatments! > > > Again, I'm no expert, which is why I rely (as so many parents do) on the McCandless book (and the advice of our DAN doctors). Has there been a change in scientific opinion since publication of McCandless' book, or do you disagree with her assessment? > > Her assessment was never correct. > > Science is based on observation (I think this is where I differ with > DAN!). Since it is observed that 20% of people have adverse reactions > to TTFD, no amount of theoretical blather or claims to the contrary > makes it wonderful and safe for everyone. > > Search the archives for TTFD problems, or ask people to contact you > privately if you need more information. .. . . . . . . > > >Thanks for sharing your knowledge. > > > > -Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Dear Andy, Thankyou very much for this most useful post. Margaret (UK) > Unfortunately, most DAN! doctors really don't know any more about > physiology than about chelation so they think glutathione is relevant > as a treatment. It isn't. > > All toxic people and most sick people have low measured glutathione. > This simply indicates it is being consumed by excessive oxidative > stress. The body makes it relatively rapidly, giving people some is > seldom helpful. > > The body makes glutathione using an enzyme (glutathione synthetase) > that puts cysteine together with other stuff to make glutathione, and > that goes faster the less glutathione is around (this is called > allosteric control - a very clever way the body regulates what it > does). > > So people with low glutathione are making it fast and using it up fast. > Those with high cysteine and low glutathione are making it double fast. > Giving them more isn't the solution. Doing something about the > oxidative stress is the solution. > > What you want to know is cysteine. If low, give them lots of sulfury > stuff so the body can make more, and thus more glutathione, otherwise > don't give them more. > > The best way to raise glutathione is with ancillary antioxidants like > vitamin C 4 times a day and vitamin E. > > If interpretation of tests is so obvious that all you do is give people > whatever is low, why do doctors need licenses? Why not just let high > school grads hang out a shingle? For the tests they are taught in > school they realize a lot of knowledge and understanding is requried > (e. g. elevated MCV - big red blood cells - does not mean you eat too > much so your blood cells are getting fat). This is equally true of the > more modern (also known as alternative) tests that they weren't taught > about in school. > > Andy . . . . . . . . . . . . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 Andy, I think we've had this conversation before, but I have four four-drawer filing cabinets full of complete papers (and I need a new a new filing cabinet because I " m running out of room!) . Reading all those papers has been hard work, but I've been doing this for nine years, and yes, the papers that are in the filing drawers are the ones I've read basically cover to cover, and I have many more I'm in the process of reading that aren't filed yet. Generally, when I post abstracts on topics that I have not introduced to the list myself, that is when I am first looking for an answer for someone to a question that is newly being considered where I think my background might be helpful. You will notice that I don't chase every sort of question...just the ones that seem to relate to my own studies. It is appropriate to use abstracts for that purpose if the information the abstracts contain seems relevant. But mostly, Andy, I will do listings of about a hundred or so abstracts from Medline (fewer if fewer exist) that speak to the question. Then I read all of the absracts, and see what they have in common. At that point, I post maybe one or two examples which best expressed the territory the others covered. Writing a good abstract is an art, and some do it better than others! I often also post abstracts from papers that I have already studied meticulously. That is so listmates can go get the paper and read it themselves. When I have cited abstracts I haven't read, I don't stop there. I will collect these abstracts and some others I didn't post, and put them in a " for my next trip to the library " folder. I make library runs to find the papers, and generally spend about $40 in copying fees at one whack (about 400 pages!). Once home with that load, I spend the next weeks reading those articles basically cover to cover to see what else I can learn. If it is useful, some part of this new information is likely to show in my next lecture wherever. Some of these studies end up not being available at the library, so those go unread, but I am positively gleeful about finding the ones that have been ignored for years, or the ones that had no abstract but end up being very valuable. But, I agree with Mark completely that most of the really good stuff never makes it into the abstract. This is largely because the purpose of an abstract is to help you identify and locate the relevant articles, but it is not meant to be a complete summary necessarily, as there are word count restrictions that may make it impossible to be very complete. You certainly don't want to rewrite the paper in the abstract! Abstracts are written puposefully with a lot of keywords that will make the papers easier to locate by search engines. Like any sign that is pointing you somewhere, the usefulness of abstracts is where they take you, and that means that they are not themselves a destination. Once you have the paper in hand, a new world opens up. In the discussion section I often find references to things I haven't heard before, and information on relationships you can't find in medline, so the references in those papers allow someone to chase generally much older studies which have wonderful content and aren't in Medline. The information in these older or unindexed papers can suddenly mean so much more in the context of discoveries that happened to be made much later on, but which now obviously tie in beautifully with the old work. The new work that hadn't been done yet can often answer the " holes " in concept that couldn't be discerned before. It is especially exciting to find those links when it is clear the new paper didn't know about the old work. Doing this sort of comparing over decades of work on a topic makes a person a little more realistic about how many of those conclusions do and don't stand the test of time. Yes, Andy, often I find biases in the interpretation that was stated in the abstract. These are easier to spot if you know alternative explanations for the data that come from other fields. That is why I advise people not to take the conclusion stated in an abstract at face value without getting the paper and seeing if they really demonstrated what they said they did. Sometimes their experimental method was inappropriate, but you cannot figure that out without reading the papers of their peers to see how the others did it. If you are lucky, you may find a paper that actually explains WHY they used the procedure they used. Explanations like that are more likely to be present in older papers, whose writing style is generally less cryptic. While in graduate school, I took four different courses on how to read scientific papers. The first was part of my academic program and was a course in how to spot junk science. One of our assignments was to find and to critique a paper that had totally missed the mark but had gotten through peer review anyway. I found a very recent doozy of a bad paper. I had to learn a new field (tuberous sclerosis) in order to understand what methods were appropriate to the field and that allowed me to see how the author had really messed up. I was shocked that the reviewers had missed so many, many errors in procedure and had also failed to realize the author avoided referencing papers that came up with conflicting data...data which clearly invalidated his hypothesis. It is too bad that the people who gave him more funding based on that paper were as unskilled in critical reading as his reviewers had been. The other three courses were designed for graduating senior majors (which I wasn't, being in graduate school) but there was no equivalent course in critical reading in the graduate school. I had some extra time on campus, so I attended the classes and did the readings as if I were taking the courses for credit. On the last one, I even did the semester project just for fun. My goal in participating was to learn what I could from the differing slant of the various professors, as each course covered a different biological field and presented the professor's own special set of papers that he felt had been the most influential in his own thinking and career. All this was quite a good background for what I do now! Andy, I admit, being a reader of such stuff is an odd calling, but if you love to do this sort of work, you get pretty fast at it, as doubtless you are pretty fast at chemistry. Reading these papers no longer seems like reading a foreign language to me, but it certainly did at first, but now I'm much more " fluent " and I read these technical papers at not too different a clip from how I read anything else. I can spot things that are easily missed by others because the information from all the previous papers I've read gives me so much larger a context to put the new information into. Also, reading across disciplines makes a person become particularly familiar with the usual biases or blind spots from different fields. The content you learn this way is pretty far removed from what textbooks cover, and it is also far-removed from what you would learn if you only studied in one field of research, or if you confined your readings to a particularly set of well-known journals, as most academics usually do. So, if you really want to know what I've read, you would have to come to my office and start with that first file drawer and slowly move through! At 10:08 AM 4/5/2004 +0000, you wrote: >Let's try a poll of our two big offenders here on list. > >, , how many of the papers that you post abstracts of did >you read before you posted the abstract? Where did you get them? How >do you find time to read so many papers when I find it takes at least >half a day to do even a simple one justice? > >And how many of them have you found where the abtract bears no real >relationship to what is in the paper? I find that all the time. Quote Link to comment Share on other sites More sharing options...
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