Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Thank you for the clarification. Best wishes, > > > > When you said " whatever he used to do, " I was left to conclude that > > you didn't know what he used to do... If you were sitting in front > of > > me right now I'd further engage in this discussion 'till we > > understood each other better, but this has taken up enough of our > > typing time and energy (atleast for me). And please note that you > > don't come across as one prone to attacks or argument. BTW, I can > > relate to your circumstances very well. > > > > Take care, > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Wow, very inspiring. & nbsp; I know so many people that stop when their children are a certain age. & nbsp; Good for you!!!! & nbsp; My sister's professor at college has 2 children in college with Autism and they are all recovered. & nbsp; Her professor met my daughter at graduation and thought she (my daughter) was very mild and made the comment, " She'll recover in no time. " & nbsp; I sent her a video of where my daughter used to be and she was surprised; just a year ago my daughter had no language, her cousins used to call her Super Girl because she flapped her hands so much they said she would fly away, she couldn't run, it took her forever to sit down (like she was trying to determine how far the seat was away), etc. I really like hearing success stories from parents with older kids because it makes me keep at it. A woman in my group has a 27 year old daughter with Autism; if you have any info. or video (of your son) that I can send to her, I would really appreciate it. Thanks! From: Axe & lt;badaboom@... & gt; Subject: [ ] Re: Less frequent dosing and internet troll behavior Date: Monday, June 9, 2008, 10:33 AM I haven’t kept up with this thread but we recovered our son who is now 19 when he was 17-18. We did not fully chelate, probably only got ½ done through the andy cutler method before having to stop to pay for medication for our daughter with uveitis. We chelated 8 months. Here is an update: A few days ago he went to rockfest and had so much fun and came back sunburned from 14 hours in the sun. He has a car, and a job and is in college. He wrote a persuasive speech for his speech class on procrastination. He has other college students that want to roommate with him and they all went looking for apartments by the college but they would not rent to them because it was too many kids in a 3 bedroom so now they are looking for a house to rent. He is brilliant in his job with computers, helps me around the house, and has friends and goes out socially, he gives eye contact and can have conversations now. He interacts with his siblings and his “chore” is to motivate them to do their chores since he is so great at that. Yesterday he told me that while watching my younger son work, he found that he didn’t get any work done because he spent the day tattling on other people and annoying them so they couldn’t get their chores done. He shows great management skill potential and shows insight into others with his thinking. Prior to chelation, he didn’t bathe, didn’t leave his room (ocd) and didn’t have a conversation beyond “need food” or can you buy me such and such video game. This is the boy that was hardly verbal and relatives told me that setting a goal of driving was too ambitious of a goal to ever set for him. I still do not think we are finished Chelating him. My next step I think should be testing his adrenals and fixing them, and then he might feel like continuing on with chelation again when we can afford it. His sleep clock is off, so that is one gain that has regressed. Please understand that I get a lot of people wanting to know what we did so I can’t answer every private email as I would like. We did the andy cutler method of chelation with a strong continual rotation of yeast fighters (everything but the kitchen sink) protocol in place while he ate a diet of pizza hut, taco bell, burger king and subway. So, basically you can chelate successfully and eat crap which I find really interesting because I could go from all organic foods and eat crap to afford chelators then go back to all organic, in theory it would work… Most often we would do a 3 day round every 2 weeks for 8 months, taking longer breaks for illness if yeast got out of control but staying on supplements inbetween rounds as well as on rounds using dmsa/ala. Dmsa only for the first month or two. Starting with very low doses, like 12.5mg, dosed every 4 hours dmsa, every 3 with ala. We also had an extreme supplementation protocol (if he needed it, he got it, and he needed a lot because of his symptoms and diet), with high zinc, clo, and amino acids which was inspired by the Pfeiffer protocol. He also needed d-lactate free probiotics. Chelation is so individual. YMMV, your mileage may vary. Each supplement, and there was about 20 different ones, with like probably 100 individual vitamins/minerals/ etc. a day or more, maybe 150. It was an amazing amount of pills. Fistfulls of pills. Not everyone will need that much. The vitamin C alone was fourty capsules a day (you give to bowel tolerance). He took 4 caps of C0-Q10 a day, we gave him lots of extra vitamins he needed. The CoQ was for his headaches. You will find the individual supplements your child needs, and test each one individually, so be prepared for that. I can’t emphasize enough how financially ready you have to be, and purchase supplements in bulk and own a capsule making machine. Then there are people who do it for much less money and use the basic supplements. I am just saying what it took to recover our son was on the extreme end of cost and amount of supplements. When we begin chelating again, he might not need all that. He eats a much healthier diet now, drinks water, and eats food at home. Ref list of supplements he took (to find your childs dosage and needs search onibasu.com) Vit C as sodium ascorbate (10,000 mg a day) Magnesium chelated Calcium Chelated zinc (54mg 4 times a day which is way over the RDA, FYI) Selenium molybdenum Vit e Cod liver oil Grapeseed extract with phosphodytlcholine We found phosphydyltcholine gave him gains so we switched to lethicin Metzger’s research states CLO/Combined with other supplements give gains and we saw this with our son. L Taurine Orthomega Pfeiffer aminos (search Pfeiffer protocol-they gave me their amino list over the phone when I explained my son’s gains) P5P Chromium Can’t remember all of them sorry Now B-50 L lysine (can’t remember why) Gut/yeast Houstons trio with food Custom probiotics away from food Candidase away from food Rotation of 2months of each MCT oil/Uva Ursi/GSE for yeast Super strength oregano away from everything dosed middle of night. Reducing sugar at times, sometimes on round. ALA stirs up yeast so 1 month prior get yeast protocol in place if your Child is yeasty. Reduce sugars prior to ala. Activated charcoal/bentonite clay/to absorb yeast dieoff given l hour after yeast fighters Bad breath/casket breath Silva solution then we switched to a better and more effective solution (andy does not agree with giving silver, so we found something that worked that was different, Chlorophyll) Chlorophyll for bacterial smell For sleep Inositol For migranes Co Q 10 I think he took 100 mgs 4x a day, buy powder from now for $100, cap it yourself in small caps He took 4 small caps a day. On the frequency of dmsa/ala we always used andy’s protocol of 3 or 4 hours on the half life depending on what we were giving ala, dmsa, or both together. We would fail the round if we missed a dose and stop the round. I find it shocking and appauling that people would use less frequent dosing…this is pointless in my opinion, displacing mercury and heavy metals rather than chelating them out. I probably have missed some things but this gives a general idea….My son is well now. His chemical sensitivity is gone and he is no longer receiving disability benefits because he said “He is no longer disabled”. He also used to be chemically sensitive and was receiving ssi for that and is no longer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 It's hard to get up every 4 hours! Once the kids are in school or outside activities, it also becomes difficult to see them every four hours for dosing. That has to be a huge factor in the decision- making process. Less frequent dosing doesn't boggle my mind; it's more the other stuff people have tried. Pam > > Why risk turning them away by being so condescending? > > I suppose the flip side of this question is " Why do people risk > turning away from a safer protocol by being too sensitive? " > > Anne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 To cosign, I keep my distance on this list because I don't know the Andy protocol but I am trying to learn it and catch up. (Yes, the book was ordered and I am waiting on it.) & nbsp; I see alot of what people are saying but I'm new and the first thing that I'm thinking is, will this be another year of DAN!? This group is definitely a little more " snappish " than others. & nbsp; It seems that the members are so experienced that they don't see that alot of the new members are in over their heads, don't know where to go and need some help figuring out the " basics " . & nbsp; I found this group by mistake while googling Autism and Mercury, I joined and when I read the posts, I try to see what may pertain to me, get my Autism books and try to reference what is being said, etc. & nbsp; Some of the one word or one phrase responses still leave a person with questions. My 2 cents & nbsp; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; You are playing troll and you should behave yourself and stop & gt; & gt; it. & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; If you weren't playing troll you'd already have started & gt; another & gt; & gt; & gt; & gt; list to discuss the wonders & gt; & gt; & gt; & gt; & gt; of 8 hour DMSA dosing and devoted your efforts there. & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; Andy & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; I don't think she is trolling. I think she is trying to say the & gt; & gt; same & gt; & gt; & gt; & gt; thing I am trying to say: If people are assumed to be wrong, & gt; & gt; guilty & gt; & gt; & gt; & gt; and stupid from the get-go for even admitting that they are & gt; & gt; doing a & gt; & gt; & gt; & gt; different protocol, then you have no hope of helping them & gt; because & gt; & gt; & gt; & gt; they won't post here. & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; I think it's a mistake to make a big issue out of her using the & gt; & gt; & gt; & gt; example of 8 hour dosing and act like she is trying to " promote " & gt; & gt; & gt; & gt; that. I don't think she is. You could say the same things about & gt; & gt; & gt; & gt; chelating with cilantro: people ask about it fairly regularly on & gt; & gt; & gt; & gt; this list and typically get shouted down with " NO DON'T DO & gt; THAT " . & gt; & gt; & gt; & gt; Some of them will do it anyway and just go elsewhere if no one & gt; & gt; will & gt; & gt; & gt; & gt; have a reasonable conversation with them here. & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; As an example, not long after I joined the list (with no & gt; intention & gt; & gt; & gt; & gt; of asking questions for myself about chelation), my attempts to & gt; & gt; & gt; & gt; understand why cilantro was helping me were initially shouted & gt; down & gt; & gt; & gt; & gt; on this list with people saying " DON'T DO THAT!!! " and, worse, & gt; & gt; & gt; & gt; people saying " don't do that to your kids " (implying I am a bad & gt; & gt; & gt; & gt; parent etc. when this didn't involve my children at all). When I & gt; & gt; & gt; & gt; did manage to finally get people to answer my actual questions & gt; & gt; & gt; & gt; instead of responding in knee jerk reaction to their fear that & gt; & gt; I was & gt; & gt; & gt; & gt; harming myself and my kids, some were apologetic for their & gt; & gt; & gt; & gt; assumptions, their previous posts, etc. & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; But I have a fairly long history of dealing effectively with & gt; being & gt; & gt; & gt; & gt; the center of controversy on lists and that allowed me to get & gt; past & gt; & gt; & gt; & gt; the initial response. Most people who come here won't have such & gt; & gt; & gt; & gt; skills and will either not post at all (and apparently write & gt; & gt; & gt; & gt; privately to Dana) or will argue with people briefly and then & gt; & gt; leave & gt; & gt; & gt; & gt; and go elsewhere. Greeting their inquiries in a manner that is & gt; & gt; & gt; & gt; experienced by them as strongly emotionally negative does & gt; & gt; nothing to & gt; & gt; & gt; & gt; convince them of " the error of their ways " . It only convinces & gt; them & gt; & gt; & gt; & gt; that folks here cannot be talked to about the issue and won't & gt; & gt; treat & gt; & gt; & gt; & gt; them in a respectful and caring fashion. Help is much more & gt; readily & gt; & gt; & gt; & gt; accepted from people who behave in a respectful and caring & gt; fashion & gt; & gt; & gt; & gt; than from people who are being disrespectful, condescending, & gt; etc. & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; Some studied showed that doctors could drastically reduce their & gt; & gt; odds & gt; & gt; & gt; & gt; of being sued for malpractice by taking an extra 30 seconds or & gt; & gt; so to & gt; & gt; & gt; & gt; have good " bedside manner " and ask questions like " How are you & gt; & gt; & gt; & gt; today? " instead of launching coldly into the medical part of it. & gt; & gt; & gt; & gt; So I would suggest that malpractice suits arise at least as & gt; & gt; much out & gt; & gt; & gt; & gt; of hurt feelings as out of genuine wrong-doing medically. That's & gt; & gt; & gt; & gt; essentially what is at issue here: Some people don't listen or & gt; & gt; & gt; & gt; won't post at all because of how they feel about their treatment & gt; & gt; & gt; & gt; (socially/emotional ly) on list rather than because of the & gt; & gt; quality of & gt; & gt; & gt; & gt; information here -- because they feel, and rightly so, that & gt; there & gt; & gt; & gt; & gt; will be an agenda to talk them out of what they are doing before & gt; & gt; & gt; & gt; anyone really listens to what is going on. & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; If that hardline can be removed from the list culture, it would & gt; & gt; & gt; & gt; further your goal of promoting frequent dose chelation. If you & gt; & gt; & gt; & gt; can't effectively reach people who are doing other types of & gt; & gt; & gt; & gt; chelation, then you wind up " preaching to the choir " rather than & gt; & gt; & gt; & gt; getting " new converts " . Since your stated goal is to reach those & gt; & gt; & gt; & gt; doing protocols that are harmful and help them to do something & gt; & gt; & gt; & gt; better, then I suggest the path to that is to figure out how to & gt; & gt; talk & gt; & gt; & gt; & gt; to them such that they do not feel you are saying they are & gt; & gt; " sinners & gt; & gt; & gt; & gt; damned to hell " who are " at fault " for hurting their kids. & gt; Because & gt; & gt; & gt; & gt; you are so knowledgeable and influential, your behavior will & gt; & gt; have a & gt; & gt; & gt; & gt; strong impact on list culture. If you continue to choose to use & gt; & gt; & gt; & gt; the " bombastic " approach, the list has a poor chance of & gt; becoming a & gt; & gt; & gt; & gt; place that welcomes exactly the type of people you state that & gt; you & gt; & gt; & gt; & gt; most wish to reach. If you find another manner that works for & gt; you, & gt; & gt; & gt; & gt; your behavior alone will go a long way towards revising the list & gt; & gt; & gt; & gt; culture and providing a model for others to follow. If that & gt; & gt; weren't & gt; & gt; & gt; & gt; so, I would be far less concerned about trying to get through to & gt; & gt; & gt; & gt; you, specifically, about what I understand works and doesn't & gt; work. & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; Peace. & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; Michele & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Less frequent dosing is what scares me most (especially IVs). We have enough damage with which we are dealing. The thought of doing further damage, and perhaps not even being able to tell for some time, scares the daylights out of me. For all that I am basically a raging liberal, I am generally pretty conservative with this stuff :-). > > > Why risk turning them away by being so condescending? > > > > I suppose the flip side of this question is " Why do people risk > > turning away from a safer protocol by being too sensitive? " > > > > Anne > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 For better or for worse, I do think it is the list where you get the stronger personality types. But it isn't usually this snappy :-) Many of the basics can be found in the files. There is one file in particular which used to be called " love letters " - a compilation of posts on the board, by category - that is very helpful. There is also another group, frequent dose chelation, which is mainly for adults who are chelating on Andy's protocol. That group is helpful and it is especially nice to have adults who can express themselves tell us their experiences with all kinds of chelation. Dig around, don't get scared off, ask questions, and make thoughtful decisions based on all the information available to you, whether it is presented in a warm-fuzzy or cold-prickly way. Ultimately, that is all we can do. Anne > > & gt; & gt; & gt; & gt; & gt; > > & gt; & gt; & gt; & gt; > > & gt; & gt; & gt; & gt; & gt; You are playing troll and you should behave yourself and stop > > & gt; & gt; it. > > & gt; & gt; & gt; & gt; & gt; > > & gt; & gt; & gt; & gt; & gt; If you weren't playing troll you'd already have started > > & gt; another > > & gt; & gt; & gt; & gt; list to discuss the wonders > > & gt; & gt; & gt; & gt; & gt; of 8 hour DMSA dosing and devoted your efforts there. > > & gt; & gt; & gt; & gt; & gt; > > & gt; & gt; & gt; & gt; & gt; Andy > > & gt; & gt; & gt; & gt; & gt; > > & gt; & gt; & gt; & gt; I don't think she is trolling. I think she is trying to say the > > & gt; & gt; same > > & gt; & gt; & gt; & gt; thing I am trying to say: If people are assumed to be wrong, > > & gt; & gt; guilty > > & gt; & gt; & gt; & gt; and stupid from the get-go for even admitting that they are > > & gt; & gt; doing a > > & gt; & gt; & gt; & gt; different protocol, then you have no hope of helping them > > & gt; because > > & gt; & gt; & gt; & gt; they won't post here. > > & gt; & gt; & gt; & gt; > > & gt; & gt; & gt; & gt; I think it's a mistake to make a big issue out of her using the > > & gt; & gt; & gt; & gt; example of 8 hour dosing and act like she is trying to " promote " > > & gt; & gt; & gt; & gt; that. I don't think she is. You could say the same things about > > & gt; & gt; & gt; & gt; chelating with cilantro: people ask about it fairly regularly on > > & gt; & gt; & gt; & gt; this list and typically get shouted down with " NO DON'T DO > > & gt; THAT " . > > & gt; & gt; & gt; & gt; Some of them will do it anyway and just go elsewhere if no one > > & gt; & gt; will > > & gt; & gt; & gt; & gt; have a reasonable conversation with them here. > > & gt; & gt; & gt; & gt; > > & gt; & gt; & gt; & gt; As an example, not long after I joined the list (with no > > & gt; intention > > & gt; & gt; & gt; & gt; of asking questions for myself about chelation), my attempts to > > & gt; & gt; & gt; & gt; understand why cilantro was helping me were initially shouted > > & gt; down > > & gt; & gt; & gt; & gt; on this list with people saying " DON'T DO THAT!!! " and, worse, > > & gt; & gt; & gt; & gt; people saying " don't do that to your kids " (implying I am a bad > > & gt; & gt; & gt; & gt; parent etc. when this didn't involve my children at all). When I > > & gt; & gt; & gt; & gt; did manage to finally get people to answer my actual questions > > & gt; & gt; & gt; & gt; instead of responding in knee jerk reaction to their fear that > > & gt; & gt; I was > > & gt; & gt; & gt; & gt; harming myself and my kids, some were apologetic for their > > & gt; & gt; & gt; & gt; assumptions, their previous posts, etc. > > & gt; & gt; & gt; & gt; > > & gt; & gt; & gt; & gt; But I have a fairly long history of dealing effectively with > > & gt; being > > & gt; & gt; & gt; & gt; the center of controversy on lists and that allowed me to get > > & gt; past > > & gt; & gt; & gt; & gt; the initial response. Most people who come here won't have such > > & gt; & gt; & gt; & gt; skills and will either not post at all (and apparently write > > & gt; & gt; & gt; & gt; privately to Dana) or will argue with people briefly and then > > & gt; & gt; leave > > & gt; & gt; & gt; & gt; and go elsewhere. Greeting their inquiries in a manner that is > > & gt; & gt; & gt; & gt; experienced by them as strongly emotionally negative does > > & gt; & gt; nothing to > > & gt; & gt; & gt; & gt; convince them of " the error of their ways " . It only convinces > > & gt; them > > & gt; & gt; & gt; & gt; that folks here cannot be talked to about the issue and won't > > & gt; & gt; treat > > & gt; & gt; & gt; & gt; them in a respectful and caring fashion. Help is much more > > & gt; readily > > & gt; & gt; & gt; & gt; accepted from people who behave in a respectful and caring > > & gt; fashion > > & gt; & gt; & gt; & gt; than from people who are being disrespectful, condescending, > > & gt; etc. > > & gt; & gt; & gt; & gt; > > & gt; & gt; & gt; & gt; Some studied showed that doctors could drastically reduce their > > & gt; & gt; odds > > & gt; & gt; & gt; & gt; of being sued for malpractice by taking an extra 30 seconds or > > & gt; & gt; so to > > & gt; & gt; & gt; & gt; have good " bedside manner " and ask questions like " How are you > > & gt; & gt; & gt; & gt; today? " instead of launching coldly into the medical part of it. > > & gt; & gt; & gt; & gt; So I would suggest that malpractice suits arise at least as > > & gt; & gt; much out > > & gt; & gt; & gt; & gt; of hurt feelings as out of genuine wrong-doing medically. That's > > & gt; & gt; & gt; & gt; essentially what is at issue here: Some people don't listen or > > & gt; & gt; & gt; & gt; won't post at all because of how they feel about their treatment > > & gt; & gt; & gt; & gt; (socially/emotional ly) on list rather than because of the > > & gt; & gt; quality of > > & gt; & gt; & gt; & gt; information here -- because they feel, and rightly so, that > > & gt; there > > & gt; & gt; & gt; & gt; will be an agenda to talk them out of what they are doing before > > & gt; & gt; & gt; & gt; anyone really listens to what is going on. > > & gt; & gt; & gt; & gt; > > & gt; & gt; & gt; & gt; If that hardline can be removed from the list culture, it would > > & gt; & gt; & gt; & gt; further your goal of promoting frequent dose chelation. If you > > & gt; & gt; & gt; & gt; can't effectively reach people who are doing other types of > > & gt; & gt; & gt; & gt; chelation, then you wind up " preaching to the choir " rather than > > & gt; & gt; & gt; & gt; getting " new converts " . Since your stated goal is to reach those > > & gt; & gt; & gt; & gt; doing protocols that are harmful and help them to do something > > & gt; & gt; & gt; & gt; better, then I suggest the path to that is to figure out how to > > & gt; & gt; talk > > & gt; & gt; & gt; & gt; to them such that they do not feel you are saying they are > > & gt; & gt; " sinners > > & gt; & gt; & gt; & gt; damned to hell " who are " at fault " for hurting their kids. > > & gt; Because > > & gt; & gt; & gt; & gt; you are so knowledgeable and influential, your behavior will > > & gt; & gt; have a > > & gt; & gt; & gt; & gt; strong impact on list culture. If you continue to choose to use > > & gt; & gt; & gt; & gt; the " bombastic " approach, the list has a poor chance of > > & gt; becoming a > > & gt; & gt; & gt; & gt; place that welcomes exactly the type of people you state that > > & gt; you > > & gt; & gt; & gt; & gt; most wish to reach. If you find another manner that works for > > & gt; you, > > & gt; & gt; & gt; & gt; your behavior alone will go a long way towards revising the list > > & gt; & gt; & gt; & gt; culture and providing a model for others to follow. If that > > & gt; & gt; weren't > > & gt; & gt; & gt; & gt; so, I would be far less concerned about trying to get through to > > & gt; & gt; & gt; & gt; you, specifically, about what I understand works and doesn't > > & gt; work. > > & gt; & gt; & gt; & gt; > > & gt; & gt; & gt; & gt; Peace. > > & gt; & gt; & gt; & gt; > > & gt; & gt; & gt; & gt; Michele > > & gt; & gt; & gt; & gt; > > & gt; & gt; & gt; & gt; > > & gt; & gt; & gt; & gt; > > & gt; & gt; & gt; > > & gt; & gt; & gt; [Non-text portions of this message have been removed] > > & gt; & gt; & gt; > > & gt; & gt; & gt; > > & gt; & gt; > > & gt; & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 THIS is why I'm 'snappy,' as someone put it. Due to medicine having collapsed into a liberal art, where the doctors think it is OK to be 'creative' with dangerous chemicals people can get pretty confused and hurt their kid A LOT before they learn the hard way that no matter how difficult it is to understand the fundamental laws of nature that govern chelation, they have to do it. I spare them the anguish of hurting their kids a lot more unnecessarily by confronting this behavior of letting the doctor dabble artistically with dangerous chemicals and their kid. Unfortunately this also causes some discomfort. Andy > > > Why risk turning them away by being so condescending? > > > > I suppose the flip side of this question is " Why do people risk > > turning away from a safer protocol by being too sensitive? " > > > > Anne > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 How many of you would say things like " I'd give my right arm to make my kid healthy again? " How many would pay $20,000 if they could make their kid healthy again? Why does a sacrifice have to be dramatic for you to be willing to do it? The mundane act of getting up for a few minutes two nights a week is actually what it takes. It really is NOT that bad if you work on your own attitude and just do it - how many times have you gotten up to go to the bathroom in the middle of the night? Giving the kid his chelator isn't any more complicated if you have set things up before you went to sleep. Andy > > > Why risk turning them away by being so condescending? > > > > I suppose the flip side of this question is " Why do people risk > > turning away from a safer protocol by being too sensitive? " > > > > Anne > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 " It's hard to get up every 4 hours " Very true - Just not as hard as dealing with the consequences that many will face if resorting to every 8 hr dosing. After some trial and error. I've found how much water I need to drink before sleeping so as to wake to chelate and go to the bathroom. This way, I don't scare myself shitless with the alarm. Also, parents are usually met with cooperation from school staff members when explaining the importance of frequent dosing. It is of utmost importance that we consider the convenience of the argument for less frequent dosing. > > > Why risk turning them away by being so condescending? > > > > I suppose the flip side of this question is " Why do people risk > > turning away from a safer protocol by being too sensitive? " > > > > Anne > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 > > > > > > Forgive me for changing the direction of the thread. I'm not > trying > > to discourage others from going on about behavior. > > > > What does it take in order for people to understand that dosing > ALA at > > 3 h intervals gently removes mercury from the body and brain while > > dosing ALA at 8 h intervals removes some mercury and blasts some > back > > into the brain with every dose. > > > > What does it take for people to understand that when ALA is dosed > at 8 > > h intervals some people will regress right away and it will be > obvious > > whereas for others the damage might not be so noticeable and they > will > > notice problems in future, like chronic pain, chronic fatigue, MS, > > ALS, hypothyroidism, Alzheimer's, psychiatric problems, and the > list > > goes on. > > > > I don't want to start going over that topic again, because it has > been > > discussed over and over again in the years that I have been > following > > the group. The chemistry of ALA has been discussed. What ALA > does in > > the body has been discussed. Pharmacology has been discussed. > And, > > there are tons of reports from parents who have recovered kids with > > every 3 h ALA, reports from parents whose kids did better on every > 3 h > > ALA as compared to other protocols, reports from adults who > regressed > > with every 8 h ALA and got better with every 3 h ALA (there are of > > course more adult reports in the adult group archives, and maybe > > that's why some people in this group don't get it). I admit it is > > difficult to sift through the archives and find those reports > because > > of the volume of posts, but one would think that the people who > have > > followed the group for years would have at least noticed. > > > > My question is - what does it take for people to understand why ALA > > must be dosed at 3 h intervals? > > > > J > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 > > > > I'm not really rebutting anyone's remarks. > > > > I guess what I'm really trying to say is: > > > > you have to bait the hook to suit the fish....... > > > > and there's cluster's of different fish out there that will respond > to > > different bait.... > > > > Not that I know anything about fishing........... > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 > > I guess I never understood it to be Andy's role to convince people, I take it as my role to do that in certain specific situations, like people who are going to hurt their kid with harmful and inapparopriate chelation. I would also take it as my role to jump on a kid who was just about to play russian roulette and take the gun away even though there is an 83% chance he will be just fine. I would also stop the car and go find out where kids lived and talk to their mommy if they liked to play in the street and play chicken with oncoming cars (I actually had this happen in my apartment complex - apparently nobody else bothered). What part of " harmful, dangerous and inappropriate " don't people understand? If I was all sweetness and light and you went off and did something to your kid that I " suggested you might consider not doing, " and your kid got horribly worse and you couldn't do anything about it, wouldn't you be upset I hadn't been a bit more forceful and convinced you not to do it in the first place? I do want to convince people not to hurt their poor unfortunate kids any more! Andy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 > I also think its possible the bombastic approach just might wake a few > people up. > > I also think when you take the softly softly approach there are a number > of people who hear: > > " At the end of the day, you can do whatever you want, its all good. " My experience has been that these are correct. Andy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 ----- Original Message ----- From: Dan & Ruth Setlak - Well, I don't see much of an effort to discern between those parents that " know better " and those that are " ignorant. " (No real discernment about what kind of fish is asking, nor what kind of hook would " fit " either.) People usually get a stern warning immediately (first post) without even an explanation. ====>We're speaking about two different things here. You're discussing Andy's demeanor, I'm speaking about mine. I don't try to explain Andy and I don't obsess over how he is. I really do believe that it's best to allow people to be who they are and then I decide if I want to get involved with them. I don't try to force people to be who I need them to be.......not that I haven't done that, it's that I have and it doesn't work. I either take what they have to offer, however it's offered, or I move on. Good use of the fishing metaphors, however ANd, to me, " know better: would imply that they had information or experience that provided some sort of proof, which they are choosing to ignore. That is almost never the case on the list. Parents are usually seeking help, information,etc. They have little to no experience with chelation, and are trying to sift through the vast amount of conflicting information. If they have used a different protocol ( like Dana) but have no reason to believe it is harmful, then how is it that they " know better " ? Because you told them? Hmmm. People on this list will attack a parent who follows the advice of a DAN or other physician, claiming they are not thinkers, but rather are blind followers. But, it seems like many here are hypocritical. If we want people to be (or become) thinkers (and not blind followers), then we need to LET THEM GO THROUGH THE PROCESS. Ask provoking questions, challenge with research and science, explain your own personal experiences. Patience IS KEY. I absolutely believe you can be straightforward and honest about the risks of chelation, how to avoid them etc without being bombastic and resorting to personal attacks. One is called integrity, the other manipulation. Ruth On Jun 9, 2008, at 11:26 AM, wrote: > > ----- Original Message ----- > From: Dan & Ruth Setlak > > Well, I don't think I proposed a softly, softly approach, but merely > a respectful one. I find it interesting that people on this list > serv often act as if there is not in-between. > > ====>Lots of lessons here, for me for sure but because it's always > easier to start with someone other than yourself.... here goes. > > A lot of this has to do with cohort groups and their expectations. > Each generation becomes more spoiled than the last, mine included. > I am a baby boomer, there were a ton of us. Noone gave us the > delusion that we were overvalued so we were taught to wait our > turn, do the work for ourself, keep our mouth shut and if someone > were willing to help us (other than our parents) noone would think > about worrying about how the message was delivered. We were stupid > enough to believe that the help was valuable. > > As the number of children a parent had lessened this has changed, > maybe for the better. But maybe not if parents' are willing to do > things to hurt their kids because the message is not in the tone > they prefer. Yes, that will teach the person not to be rude. Really > fail to see the logic here. > > And, at the end of the > day, they are the parents and will need to make their own decisions. > > ====>Yes, this is the right of every parent, within reason, no > doubt. However I do not think respect is something I can muster for > parents' who chose to do things to hurt their children, sorry, > can't do it. For parents' who are ignorant (meaning they don't know > better) lots of patience..... for parents' who know better and > chose to do things in the parents' best interests...I can't muster > respect for that idea. > > Overconcern for the feelings of adults who have choices appear to > be at the expense of little people who are helpless......something > wrong here. > > You can be straightforward, not apologetic, > and accurately state the risks without being rude, condescending, and > manipulative, IMO. > > ====>No, you really can't be straightforward without a lot of > unwarranted complaints that you are bashing and such. It's always > interesting to me that after a conversation with Dana the only > people who are whipped into emotional overdrive are..........Dana > and I. > > You're correct in that you can't please everyone and I agree that > the response should match the situation and rarely necessitates > starting out with strong tactics....however, they are sometimes > necessary. > > > > Ruth > On Jun 9, 2008, at 9:30 AM, Reynolds wrote: > > > Then again there are those of us that like people that cut to the > > chase > > and don't pussyfoot around. > > > > I also think its possible the bombastic approach just might wake > a few > > people up. > > > > I also think when you take the softly softly approach there are a > > number > > of people who hear: > > > > " At the end of the day, you can do whatever you want, its all good. " > > > > But its not all good. > > > > Dan & Ruth Setlak wrote: > > > > > > Just want to say that I agree. whether you choose bombastic or > > > respectful, you won't convince everyone. strong, assertive, but > > > respectful will, in my mind, reach more people. You will always > have > > > the ones that are going to do what they want, no matter what, > or who > > > only will listen to what they want to hear. But, there are > those you > > > are really seeking to learn, who want real information. Why risk > > > turning them away by being so condescending? > > > > > > Ruth > > > On Jun 8, 2008, at 7:34 PM, Michele wrote: > > > > > > > > > > > > > > > > > > > > > You are playing troll and you should behave yourself and stop > > it. > > > > > > > > > > If you weren't playing troll you'd already have started > another > > > > list to discuss the wonders > > > > > of 8 hour DMSA dosing and devoted your efforts there. > > > > > > > > > > Andy > > > > > > > > > I don't think she is trolling. I think she is trying to say the > > same > > > > thing I am trying to say: If people are assumed to be wrong, > > guilty > > > > and stupid from the get-go for even admitting that they are > > doing a > > > > different protocol, then you have no hope of helping them > because > > > > they won't post here. > > > > > > > > I think it's a mistake to make a big issue out of her using the > > > > example of 8 hour dosing and act like she is trying to " promote " > > > > that. I don't think she is. You could say the same things about > > > > chelating with cilantro: people ask about it fairly regularly on > > > > this list and typically get shouted down with " NO DON'T DO > THAT " . > > > > Some of them will do it anyway and just go elsewhere if no one > > will > > > > have a reasonable conversation with them here. > > > > > > > > As an example, not long after I joined the list (with no > intention > > > > of asking questions for myself about chelation), my attempts to > > > > understand why cilantro was helping me were initially shouted > down > > > > on this list with people saying " DON'T DO THAT!!! " and, worse, > > > > people saying " don't do that to your kids " (implying I am a bad > > > > parent etc. when this didn't involve my children at all). When I > > > > did manage to finally get people to answer my actual questions > > > > instead of responding in knee jerk reaction to their fear that > > I was > > > > harming myself and my kids, some were apologetic for their > > > > assumptions, their previous posts, etc. > > > > > > > > But I have a fairly long history of dealing effectively with > being > > > > the center of controversy on lists and that allowed me to get > past > > > > the initial response. Most people who come here won't have such > > > > skills and will either not post at all (and apparently write > > > > privately to Dana) or will argue with people briefly and then > > leave > > > > and go elsewhere. Greeting their inquiries in a manner that is > > > > experienced by them as strongly emotionally negative does > > nothing to > > > > convince them of " the error of their ways " . It only convinces > them > > > > that folks here cannot be talked to about the issue and won't > > treat > > > > them in a respectful and caring fashion. Help is much more > readily > > > > accepted from people who behave in a respectful and caring > fashion > > > > than from people who are being disrespectful, condescending, > etc. > > > > > > > > Some studied showed that doctors could drastically reduce their > > odds > > > > of being sued for malpractice by taking an extra 30 seconds or > > so to > > > > have good " bedside manner " and ask questions like " How are you > > > > today? " instead of launching coldly into the medical part of it. > > > > So I would suggest that malpractice suits arise at least as > > much out > > > > of hurt feelings as out of genuine wrong-doing medically. That's > > > > essentially what is at issue here: Some people don't listen or > > > > won't post at all because of how they feel about their treatment > > > > (socially/emotionally) on list rather than because of the > > quality of > > > > information here -- because they feel, and rightly so, that > there > > > > will be an agenda to talk them out of what they are doing before > > > > anyone really listens to what is going on. > > > > > > > > If that hardline can be removed from the list culture, it would > > > > further your goal of promoting frequent dose chelation. If you > > > > can't effectively reach people who are doing other types of > > > > chelation, then you wind up " preaching to the choir " rather than > > > > getting " new converts " . Since your stated goal is to reach those > > > > doing protocols that are harmful and help them to do something > > > > better, then I suggest the path to that is to figure out how to > > talk > > > > to them such that they do not feel you are saying they are > > " sinners > > > > damned to hell " who are " at fault " for hurting their kids. > Because > > > > you are so knowledgeable and influential, your behavior will > > have a > > > > strong impact on list culture. If you continue to choose to use > > > > the " bombastic " approach, the list has a poor chance of > becoming a > > > > place that welcomes exactly the type of people you state that > you > > > > most wish to reach. If you find another manner that works for > you, > > > > your behavior alone will go a long way towards revising the list > > > > culture and providing a model for others to follow. If that > > weren't > > > > so, I would be far less concerned about trying to get through to > > > > you, specifically, about what I understand works and doesn't > work. > > > > > > > > Peace. > > > > > > > > Michele > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 FWIW - we are getting up 3 nights - doing a complete 72 hours - and my chelating kids siblings (grown and living on their own) are even willing to get up in the night when they stay over to make sure little brother or sister takes their ALA. This last weekend we were doing 2a.m. and 6a.m. phone calls to make sure no one forgot. They are all anxiously waiting for when they too can start chelating. Even Dad, who works 12 hour days, is willing to get up! We are all so excited about getting better, that 3 nights a week really seems not too bad compared to the years of troubles we have already endured. We already did 12 years of night waking for bed wetting, sleep walking, tooth grinding, stomach aches, etc. This really is a walk in the park. My older son loved the 2 a.m. dosing, since it coincides with the free download time on our internet service!! He wakes, takes his pills then starts a download and goes back to bed. :-) Teenagers are so resourceful when they feel good. P. andrewhallcutler wrote: > > How many of you would say things like " I'd give my right arm to make > my kid healthy > again? " > > How many would pay $20,000 if they could make their kid healthy again? > > Why does a sacrifice have to be dramatic for you to be willing to do > it? The mundane act > of getting up for a few minutes two nights a week is actually what it > takes. It really is NOT > that bad if you work on your own attitude and just do it - how many > times have you > gotten up to go to the bathroom in the middle of the night? Giving the > kid his chelator > isn't any more complicated if you have set things up before you went > to sleep. > > Andy > > > > > > Why risk turning them away by being so condescending? > > > > > > I suppose the flip side of this question is " Why do people risk > > > turning away from a safer protocol by being too sensitive? " > > > > > > Anne > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 In fact, I would argue that given that one of the major obstacles standing between people dosing every three hours and people dosing less frequently, whatever the medium of delivery, is convenience, people need to take the information available to them i.e. information like " dosing other than accoriding to the 1/2 life of a chelator is harmful, dangerous and inappropriate " and convince themselves that they should do it more frequently. If you really DO want to convince people, then you probably do need to do a lot more hand holding than you seem to do. I imagine that the issue for most people isn't truly thinking you are wrong, but thinking that there is no way they can do it. In that case, people need to be assured, reassured, empowered, etc., until they are convinced that frequent dosing isn't the end of the world. Although I am guilty of not having been here for my fellow board members lately, I tend to think that the hand-holding, etc., is what board members who advocate for your dosing schedule are here for. You are right, getting up in the middle of the night isn't a huge sacrifice. What I find to be more of a sacrifice is doing what I have to do to be as organized as is required to do things efficiently and consistently. My husband usually does one dose after I go to bed, but other than that, I have little support other than from the folks here and on other boards, and all of this, the researching, buying, ordering, preparing, organizing, etc., is on me. If I didn't work full time, it wouldn't seem so overwhelming, but I do, and have to, and it does. I know for a fact that there are many parents who have even more on their plates than I do. Doing the frequent dosing on top of adding in what is essentially another job into an already hectic life can seem crazy. On the other hand, doing all of the organizing, etc., only to put your child in the way of further danger seems even crazier. As for your statement that fear begets bad decision making, I remember distinctly one instance in which you scared the bejesus out of me and, in fact, that fear got me to do exactly what I needed to do, and fast. I realize that that same fear, if misplaced, could spell disaster. Being cautious is generally good. However, being terrified of IV chelation is, in my opinion, not such a bad thing. Ultimately, it seems to me, it is about who to trust. If good decisions are made in that respect, there will be better information, less fear, and an all around better prognosis. > > > > I guess I never understood it to be Andy's role to convince people, > > I take it as my role to do that in certain specific situations, like people who are going to > hurt their kid with harmful and inapparopriate chelation. > > I would also take it as my role to jump on a kid who was just about to play russian roulette > and take the gun away even though there is an 83% chance he will be just fine. > > I would also stop the car and go find out where kids lived and talk to their mommy if they > liked to play in the street and play chicken with oncoming cars (I actually had this happen > in my apartment complex - apparently nobody else bothered). > > What part of " harmful, dangerous and inappropriate " don't people understand? > > If I was all sweetness and light and you went off and did something to your kid that I > " suggested you might consider not doing, " and your kid got horribly worse and you > couldn't do anything about it, wouldn't you be upset I hadn't been a bit more forceful and > convinced you not to do it in the first place? > > I do want to convince people not to hurt their poor unfortunate kids any more! > > Andy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 ----- Original Message ----- From: My question is - what does it take for people to understand why ALA must be dosed at 3 h intervals? ===>Just some explanation of a general understanding of why people say they don't understand something/anything. A lot of people do " get it " but some use the incorrect phrasing of " I don't understand " when they don't want to understand or don't want to do something. This is useful for buying time to rationalize why you can't do whatever it is that is necessary. I see this in my practice all the time as I ask parents' to do MUCH, MUCH harder things than getting up for a few nights like keeping their kid away from their nonparental love partners. Some think the rules don't apply to them and some are stuck in feeling as if they were invinceable or the idea that nothing bad will happen when they don't follow the rules or do what is optimal. J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Andy if I ever met you in real life I think I would burst into tears and give you such a big hug. We rearranged our entire lives around the 3 or 4 hour schedules, having multiple people manning phones with multiple cellphone alarms set, with backup plans A through G to make sure he took the doses on time. If I was not home and could not get ahold of someone at home to give him his dose, I immediately turned around and headed home to dose him myself. This happened so many times I can't even count. Even when I pre planned to have two people home by the phone (my mom or my son's siblings). Plus when my son's sleep schedule was off and he was awake nights and slept days, I dosed him his supplements every four hours at night!!!! Then, he eventually six months into chelation could take his pills himself. Towards the end, he could spend the weekend at a friends and chelate himself and set alarms and be responsible for his own doses. On top of that, when he got better and was awake days instead of nights, my son needed an extra dose of oregano for yeast and the only time to give it was in the middle of the night since it needed to be away from supplements and he took so many. So I woke up in the middle of the night every night during the last 3 months or so to wake him so that he took that. 3 Words..SO WORTH IT!!!!!!!! So Worth it So Worth it When I see my son right now that is all I can say to encourage you new parents to stick around. It is like birthing a new baby, and parenting a newborn, and we all know that takes being up nights, and really.it's a small price to pay for wellness. A new brain is forming, think of it that way. Chelation is a beautiful dance, and the chelator claws out the toxins, and every three or four hours depending on what you are taking, the chelator needs to change dance partners, that is when you give another. Each new dose of chelator claws onto those heavy metals and gracefully dances the toxins out of the body, and this dance takes place with new partners every three/four hours over three days. To miss a dose is to miss the dance partner and drop the mercury and heavy metals (what we call displacement) and stop that dance from happening. That was an analogy from Andy that helped me understand how it works. I don't want to just move mercury all around and displace it, I want to escort it out of the building. It helped me to think of it that way when I was up at night. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 My son would not let me take video of him so in every one I took anyway, he is just shouting and flipping me off, which wouldn't go over well at a conference " hey look at my son's improvements " LOL!!! Can you imagine? So I don't have any before videos that are very good, but I did take some pictures and they are under Bestbirths child #1 in the files. He still doesn't like pictures taken, but he looks even better now than in those pics. His gramma is paying him $50 to get a photo professionally done in his suit as a graduation gift. I will post that as soon as I get it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Hey maybe you'd be snappish too if you'd been up every four hours at night. Giggle. Maybe that's why this group is more snippy. Sleep deprovation!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 I've been reading a lot of the posts on the debate over the frequent dose chelation, and I just wanted to put my two cents in. Once you make up your mind that frequent dosing is the safest and most effective way to get your child better, it really isn't that big of a deal. I mean most of us were up during the night when our kids were newborns. At least this is just on the weekends or every other weekend. Also, I just have a schedule of 3:00, 6:00, 9:00, 12:00...etc. so it's easy to remember. I have a little cooler by my bed with his ALA and some apple sauce and set my alarm to wake up. I give my son a spoonful of applesauce with the pill in it and he barely opens his eyes to take it and rolls back over and falls back to sleep. The whole process takes about 2 minutes and I'm back in bed. I, of course, wish I didn't have to do this. It can be a little annoying, but like Andy said...most of us would cut our right arms off if it would get our kids recovered. Since I'm the one who took my child to the doctor and stood by while he was pumped with mercury and various other toxins...unknowingly of course...I think the least I can do is sacrifice a couple of nights of unbroken sleep if there's even a possibility of getting my son better. If the debate is over what's safer, the frequent or less frequent dosage, that's one thing. But if the hesitation is just about getting up during the night, I just want to say once you've been doing it awhile, it becomes routine like everything else and really isn't a big deal. Carla In a message dated 6/9/2008 2:13:02 P.M. Pacific Daylight Time, anneecbrynn@... writes: In fact, I would argue that given that one of the major obstacles standing between people dosing every three hours and people dosing less frequently, whatever the medium of delivery, is convenience, people need to take the information available to them i.e. information like " dosing other than accoriding to the 1/2 life of a chelator is harmful, dangerous and inappropriate " and convince themselves that they should do it more frequently. If you really DO want to convince people, then you probably do need to do a lot more hand holding than you seem to do. I imagine that the issue for most people isn't truly thinking you are wrong, but thinking that there is no way they can do it. In that case, people need to be assured, reassured, empowered, etc., until they are convinced that frequent dosing isn't the end of the world. Although I am guilty of not having been here for my fellow board members lately, I tend to think that the hand-holding, etc., is what board members who advocate for your dosing schedule are here for. You are right, getting up in the middle of the night isn't a huge sacrifice. What I find to be more of a sacrifice is doing what I have to do to be as organized as is required to do things efficiently and consistently. My husband usually does one dose after I go to bed, but other than that, I have little support other than from the folks here and on other boards, and all of this, the researching, buying, ordering, preparing, organizing, etc., is on me. If I didn't work full time, it wouldn't seem so overwhelming, but I do, and have to, and it does. I know for a fact that there are many parents who have even more on their plates than I do. Doing the frequent dosing on top of adding in what is essentially another job into an already hectic life can seem crazy. On the other hand, doing all of the organizing, etc., only to put your child in the way of further danger seems even crazier. As for your statement that fear begets bad decision making, I remember distinctly one instance in which you scared the bejesus out of me and, in fact, that fear got me to do exactly what I needed to do, and fast. I realize that that same fear, if misplaced, could spell disaster. Being cautious is generally good. However, being terrified of IV chelation is, in my opinion, not such a bad thing. Ultimately, it seems to me, it is about who to trust. If good decisions are made in that respect, there will be better information, less fear, and an all around better prognosis. > > > > I guess I never understood it to be Andy's role to convince people, > > I take it as my role to do that in certain specific situations, like people who are going to > hurt their kid with harmful and inapparopriate chelation. > > I would also take it as my role to jump on a kid who was just about to play russian roulette > and take the gun away even though there is an 83% chance he will be just fine. > > I would also stop the car and go find out where kids lived and talk to their mommy if they > liked to play in the street and play chicken with oncoming cars (I actually had this happen > in my apartment complex - apparently nobody else bothered). > > What part of " harmful, dangerous and inappropriate " don't people understand? > > If I was all sweetness and light and you went off and did something to your kid that I > " suggested you might consider not doing, " and your kid got horribly worse and you > couldn't do anything about it, wouldn't you be upset I hadn't been a bit more forceful and > convinced you not to do it in the first place? > > I do want to convince people not to hurt their poor unfortunate kids any more! > > Andy > **************Vote for your city's best dining and nightlife. City's Best 2008. (http://citysbest.aol.com?ncid=aolacg00050000000102) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 > > > Forgive me for changing the direction of the thread. I'm not trying > to discourage others from going on about behavior. > > > My question is - what does it take for people to understand why ALA > must be dosed at 3 h intervals? > > J > Well, at the risk of seeming to beat a dead horse, I don't think I am talking about " behavior " . I think I am talking about trying to communicate effectively. I'm not really all that strong in science. I can deal with it but it isn't an innate strength of mine. If I had to personally research and comprehend the scientific underpinnings of my health problems to get well, I might be dead by now. Given that science is not my forte, when I was deathly ill, it was just not possible for me to wrap my brain around that stuff. I can do it with effort when I am healthy. I couldn't do it when I was really, really sick and overwhelmed. Instead, I found people to talk to who were better than me in that area. One woman I spoke with for a long time and who helped me enormously has a lot of training in alternative medicine. Initially, I was reluctant to take her advice because much of it sounded so outlandish to me. It did not fit with what I understood about how things worked. It did not fit with what doctors and teachers and such said. I was slow to make use of her suggestions. She repeated some things to me for several months before I was willing to act on it. Only after acting on some of her suggestions did I become more open to her " outlandish " ideas. It got gradually easier for me to trust suggestions from her that simply didn't fit with things I previously knew. So I managed to accomplish the " impossible " and get well in spite of science being a relatively weak area for me and in spite of being too sick to do the work it would take for me to really understand the chemistry, physiology, etc at the root of my health problems. I managed that because I have reasonably good judgment about whom to take advice from. We all make judgment calls on a regular basis about whom to trust. If nothing else, you have to believe that the stories about success or failure on a particular protocol are truthful testimony. Unless you are going to do experiments completely on your own and only believe what you see first hand with your own eyes and reinvent all scientific principles from the ground up, you have to trust to some degree that what other's say is truthful. In the face of conflicting information, you also have to decide which sources are the most reliable. People who don't have enough of an educational background to judge whose information sounds solid typically use other social indicators of " crediblity " to choose whom to trust and what information to act on. These include things like titles ( " doctor " ), educational achievements ( " phd " ), uniforms, and social proof (ie lots of other people that I trust believe this person is credible). This is part of where doctors get so much power to influence the decisions of others. Also, emotion is a form of memory and judgment. When a person is unable for some reason to make a decision based on research, conscious memory of specific events and other 'rational' types of information, they typically " go with their gut " and do what their feelings tell them to do. Research indicates that people who are less emotional have more trouble making snap decisions. They have to research it and make a conscious decision based on data because they are unable to draw on this other type of information. That has both good points and bad points. When I lived with my parents for nearly a year while going through my divorce, I and my sons had to deal with my elderly father (80 at the time) who likely qualifies for a diagnosis of Alzheimer's. We didn't find him difficult to deal with. My mother often had screaming fights with him, driven by her own fear of what was happening to him and frustrations, and when he was constantly nasty to her, she blamed it on Alzheimer's. But he was never nasty that way with my sons and I. We never belittled him or treated him like he was stupid for not remembering that he had already told this same story 10 other times. We listened fairly patiently so he could get his need met for telling this story again. We respected his routines because we are aware that muscle memory (aka routines) is another form of memory which still continued to serve him in spite of his inability to consciously remember many recent events. My oldest son has a lot of brain glitches, most of which can be traced to a head injury in infancy. So we used a lot of these strategies for his benefit for many years before we were faced with my father's condition. So my sons and I found my father's very faulty memory easy to cope with and accommodate. And we didn't treat him badly. In contrast, my mother would say the most awful things to my dad and justify it with " He won't remember it in five minutes " . My kids and I knew that he DID remember it on some level, even if he couldn't recall the specific words: the negative emotions remained and he made his judgements on who to trust based on those feelings. He was suspicious of her because of the negative feelings he had towardds her. He had nothing else to go on but that remaining faculty. And his trust for my sons and I gradually increased because he had no negative associations with us in his emotional memory bank. So the longer I lived there, the more he was willing to eat food I cooked and do other things which exhibited trust in me. My mother was really surprised because my dad was typically unwilling to eat anyone's cooking but hers. One of the things I did was just to leave food at his place at the table so he could eat it when he chose to eat it. I avoided the attempts to control him that my mother constantly engaged in. I knew how to avoid those wrestling matches for control because I had worked for so many years with my oldest son's issues. I have tried on a few occasions to express this understanding to others and it usually gets me greeted with the internet equivalent of jaw-dropping and staring as if I had just sprouted three heads. So most of the time I don't try to talk about it. Many people on a list like this one will be one or more of the following: too uneducated, too uninformed, too overwhelmed to do their own research, not innately good at science, and/or too physically ill to cope with research they might otherwise do. Those people are more likely to use social proof and " go with their gut " -- ie the person they " like " or the person who seems trustworthy based on title or based on eliciting positive feelings. I don't have what it takes to be a used-car-salesman type and fast-talk people into trusting me. I have found that being very honest and also setting a high standard for treating them with respect does eventually win over a lot of people, in spite of my many failings like sticking both feet in my mouth when I don't feel well. So, for me, the path that works is respect people and try to understand WHY they do things and try to be honest about what works even though that may " hurt their feelings " in the short run. But I don't do it with a callous disregard for how they will feel about the information. I realize it will hurt and I try to be considerate without watering down the facts in any way. I don't do that because I care all that much about feelings. I do that because it increases the odds that they will at least " hear " what I am saying even if they don't ultimately agree with me. Too much negative emotion towards me will close people's minds to ideas I put forth, sometimes shutting them so totally that they will reject anything that appears to " agree " with me/things I have said simply because it appears to agree with me. I know the conversation is essentially dead. I would have posted this much earlier today but I didn't have time. I had to leave for work. Peace. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 For clarity's sake, I want to add that my father's trust in me grew in spite of the fact the he often didn't know I was his daughter, often didn't know my name, etc. He would come to me and say " Have you seen Michele? Did she leave the house? I have her mail/there's a phone call for her/whatever. " And I would say " I'm Michele " . Yet, he would eat what I cooked. So he knew me on one level but not another. I was perfectly comfortable with that. But my mother couldn't make any sense of it. The growing trust he exhibited was proof that on some level, there was a growing sense of who I was, in spite of his seriously deteriorated mental faculties. Michele > > So the longer I lived there, the more he was willing to eat food I > cooked and do other things which exhibited trust in me. My mother > was really surprised because my dad was typically unwilling to eat > anyone's cooking but hers. One of the things I did was just to leave > food at his place at the table so he could eat it when he chose to > eat it. I avoided the attempts to control him that my mother > constantly engaged in. I knew how to avoid those wrestling matches > for control because I had worked for so many years with my oldest > son's issues. I have tried on a few occasions to express this > understanding to others and it usually gets me greeted with the > internet equivalent of jaw-dropping and staring as if I had just > sprouted three heads. So most of the time I don't try to talk about > it. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Hey , " I don't think I am talking about " behavior " . I think I am talking about trying to communicate effectively. " You ARE talking about behavior - you cannot communicate (effectively or not) without behavior (defined as " manner of acting or conducting yourself " ). Also, in the ten paragraphs you typed, I'm still looking for you're amswer to the question posed, " what does it take for people to understand why ALA must be dosed at 3 h intervals? " Some people are better at science; you are better with your interpersonal skills. If someone were to insist that it would be beneficial for you to be more scientific in your logic, it wouldn't be very helpful. Similarly, some people will deride minimal benefit from persistent recommendation that they should interact with people in the manner you've found effective. I AGREE that you handled your father better than your mother, but your mother must have been wired differently enough that she wouldn't/couldn't acquire your approach (despite it's greater efficacy). Personality (which has great bearing on how we communicate) is based largely on genetic factors. Because we are all wired differently, we can't expect everyone to be comfortable with the mode of communication you've had the most success with. Also, do you think that Andy would be able to address as many sick peoples' questions if he were busy considering and reconsidering his wording for the sake of everyone's emotional needs? Based on everything you've written (that I've read) I consider you to be a very special, loving, and considerate person. It is people like you who serve to balance the style of others who express themselves differently. Best Regards, > > > > > > Forgive me for changing the direction of the thread. I'm not > trying > > to discourage others from going on about behavior. > > > > > > > My question is - what does it take for people to understand why ALA > > must be dosed at 3 h intervals? > > > > J > > > > Well, at the risk of seeming to beat a dead horse, I don't think I > am talking about " behavior " . I think I am talking about trying to > communicate effectively. > > I'm not really all that strong in science. I can deal with it but > it isn't an innate strength of mine. If I had to personally > research and comprehend the scientific underpinnings of my health > problems to get well, I might be dead by now. Given that science is > not my forte, when I was deathly ill, it was just not possible for > me to wrap my brain around that stuff. I can do it with effort when > I am healthy. I couldn't do it when I was really, really sick and > overwhelmed. > > Instead, I found people to talk to who were better than me in that > area. One woman I spoke with for a long time and who helped me > enormously has a lot of training in alternative medicine. > Initially, I was reluctant to take her advice because much of it > sounded so outlandish to me. It did not fit with what I understood > about how things worked. It did not fit with what doctors and > teachers and such said. I was slow to make use of her suggestions. > She repeated some things to me for several months before I was > willing to act on it. Only after acting on some of her suggestions > did I become more open to her " outlandish " ideas. It got gradually > easier for me to trust suggestions from her that simply didn't fit > with things I previously knew. > > So I managed to accomplish the " impossible " and get well in spite of > science being a relatively weak area for me and in spite of being > too sick to do the work it would take for me to really understand > the chemistry, physiology, etc at the root of my health problems. I > managed that because I have reasonably good judgment about whom to > take advice from. We all make judgment calls on a regular basis > about whom to trust. If nothing else, you have to believe that the > stories about success or failure on a particular protocol are > truthful testimony. Unless you are going to do experiments > completely on your own and only believe what you see first hand with > your own eyes and reinvent all scientific principles from the ground > up, you have to trust to some degree that what other's say is > truthful. In the face of conflicting information, you also have to > decide which sources are the most reliable. > > People who don't have enough of an educational background to judge > whose information sounds solid typically use other social indicators > of " crediblity " to choose whom to trust and what information to act > on. These include things like titles ( " doctor " ), educational > achievements ( " phd " ), uniforms, and social proof (ie lots of other > people that I trust believe this person is credible). This is part > of where doctors get so much power to influence the decisions of > others. > > Also, emotion is a form of memory and judgment. When a person is > unable for some reason to make a decision based on research, > conscious memory of specific events and other 'rational' types of > information, they typically " go with their gut " and do what their > feelings tell them to do. Research indicates that people who are > less emotional have more trouble making snap decisions. They have > to research it and make a conscious decision based on data because > they are unable to draw on this other type of information. That has > both good points and bad points. > > When I lived with my parents for nearly a year while going through > my divorce, I and my sons had to deal with my elderly father (80 at > the time) who likely qualifies for a diagnosis of Alzheimer's. We > didn't find him difficult to deal with. My mother often had > screaming fights with him, driven by her own fear of what was > happening to him and frustrations, and when he was constantly nasty > to her, she blamed it on Alzheimer's. But he was never nasty that > way with my sons and I. We never belittled him or treated him like > he was stupid for not remembering that he had already told this same > story 10 other times. We listened fairly patiently so he could get > his need met for telling this story again. We respected his > routines because we are aware that muscle memory (aka routines) is > another form of memory which still continued to serve him in spite > of his inability to consciously remember many recent events. My > oldest son has a lot of brain glitches, most of which can be traced > to a head injury in infancy. So we used a lot of these strategies > for his benefit for many years before we were faced with my father's > condition. So my sons and I found my father's very faulty memory > easy to cope with and accommodate. And we didn't treat him badly. > In contrast, my mother would say the most awful things to my dad and > justify it with " He won't remember it in five minutes " . My kids and > I knew that he DID remember it on some level, even if he couldn't > recall the specific words: the negative emotions remained and he > made his judgements on who to trust based on those feelings. He was > suspicious of her because of the negative feelings he had towardds > her. He had nothing else to go on but that remaining faculty. And > his trust for my sons and I gradually increased because he had no > negative associations with us in his emotional memory bank. > > So the longer I lived there, the more he was willing to eat food I > cooked and do other things which exhibited trust in me. My mother > was really surprised because my dad was typically unwilling to eat > anyone's cooking but hers. One of the things I did was just to leave > food at his place at the table so he could eat it when he chose to > eat it. I avoided the attempts to control him that my mother > constantly engaged in. I knew how to avoid those wrestling matches > for control because I had worked for so many years with my oldest > son's issues. I have tried on a few occasions to express this > understanding to others and it usually gets me greeted with the > internet equivalent of jaw-dropping and staring as if I had just > sprouted three heads. So most of the time I don't try to talk about > it. > > Many people on a list like this one will be one or more of the > following: too uneducated, too uninformed, too overwhelmed to do > their own research, not innately good at science, and/or too > physically ill to cope with research they might otherwise do. Those > people are more likely to use social proof and " go with their gut " - - > ie the person they " like " or the person who seems trustworthy based > on title or based on eliciting positive feelings. I don't have what > it takes to be a used-car-salesman type and fast-talk people into > trusting me. I have found that being very honest and also setting a > high standard for treating them with respect does eventually win > over a lot of people, in spite of my many failings like sticking > both feet in my mouth when I don't feel well. So, for me, the path > that works is respect people and try to understand WHY they do > things and try to be honest about what works even though that > may " hurt their feelings " in the short run. But I don't do it with > a callous disregard for how they will feel about the information. I > realize it will hurt and I try to be considerate without watering > down the facts in any way. I don't do that because I care all that > much about feelings. I do that because it increases the odds that > they will at least " hear " what I am saying even if they don't > ultimately agree with me. Too much negative emotion towards me will > close people's minds to ideas I put forth, sometimes shutting them > so totally that they will reject anything that appears to " agree " > with me/things I have said simply because it appears to agree with > me. > > I know the conversation is essentially dead. I would have posted > this much earlier today but I didn't have time. I had to leave for > work. > > Peace. > > Michele > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 > > Hey , > > " I don't think I am talking about " behavior " . I think I am talking > about trying to communicate effectively. " > > You ARE talking about behavior - you cannot communicate (effectively > or not) without behavior (defined as " manner of acting or conducting > yourself " ). Words are often a rather crude attempt to convey meaning from the mind of one being to the mind of another. If " behavior " is a more effective medium for conveying my meaning, I go that route. The ultimate goal is still communication. Also, in the ten paragraphs you typed, I'm still looking > for you're amswer to the question posed, " what does it take for > people to understand why ALA must be dosed at 3 h intervals? " I don't think you can reach people if you assume they think exactly like you do and if you think that hard research (etc) is the ONLY effective means to make judgement calls. Those people unable to comprehend things in the same way comprehends things aren't simply " stupid " as her remarks seem to imply. They may just process information differently, draw conclusions differently, etc. Understanding how someone draws those conclusions when they are unable to do what she does can help in figuring out how to present information to them in a way they find useful. When I was in 11th grade, I tutored a mentally handicapped girl who for some reason was taking algebra. She often just couldn't get my first explanation. Or my second. Or my third. But unlike me, she also never got exasperated and she never expressed the idea that she was ready to simply give up out of frustration. I graduated STAR student and a national merit scholarship winner. I never worked as hard for my A's and B's as she worked for her C's and D's. I couldn't bring myself to just give up on her when she wasn't going to give up on herself. I learned to explain things up to 12 different ways if that was what it took for her to get it. A lot of times, people who do readily grasp something are the ones who just have no patience for someone who needs more time, more repetition, or another format of presentation. (This includes me. I wasn't born with any patience at all.) That's fine if you just want to feel superior. But it accomplishes nothing if your goal is to help them. As a different example, I run several websites. Those also started while I was extremely ill. Someone else was interested in publishing something I said on their website, it grew from one page to several, I eventually took it over. When I took it over, I knew nothing at all about running websites. I actually now have a Certificate in Geographic Information Systems, which is a very technical field, but the technical stuff is not my area of strength. Some people who valued the information I had to offer and also had more technical expertise than I had were willing to help me without treating me like I was an idiot. Others with more technical expertise were quite ugly to me and I didn't find their " suggestions " helpful or even palatable and stopped talking to them. I now code my websites by hand. But it took a long time to get here from there and I couldn't have done it without live human beings explaining things to me. Looking information up wouldn't have helped. There are people here in a similar circumstance who really need someone to explain it to them. Telling them " I can't help it if you don't understand basic science " and then complaining those folks " don't listen " doesn't make sense to me. (I have heard Andy say something along those lines to someone.) Those people unable to do the research -- due to their education level or due to time constraints or due to how sick they are or for whatever reason -- often cannot get the information without someone taking the time to patiently explain things. They want the information. They just have obstacles to acquiring it. > > Some people are better at science; you are better with your > interpersonal skills. If someone were to insist that it would be > beneficial for you to be more scientific in your logic, it wouldn't > be very helpful. Similarly, some people will deride minimal benefit > from persistent recommendation that they should interact with people > in the manner you've found effective. I AGREE that you handled your > father better than your mother, but your mother must have been wired > differently enough that she wouldn't/couldn't acquire your approach > (despite it's greater efficacy). Personality (which has great > bearing on how we communicate) is based largely on genetic factors. Genes are the same material as virii. And my son with CF and I are losing some of our " CF Traits " . I have difficulty believing that personality or even genetics is as fixed as your remarks suggest. I also did a lot of therapy/introspection/work on myself when I was younger. People can change a great many things that are typically assumed to be fairly fixed. > Because we are all wired differently, we can't expect everyone to be > comfortable with the mode of communication you've had the most > success with. I'm not suggesting everyone should do what I do. My main hope in sharing that information is to convey what it can be like for someone who has tremendous burdens and wants the help. Blaming them, jumping to the conclusion that they don't really want to get better because they are slower to grasp it than you are, etc, doesn't further the goal of helping them. Some people are just really overwhelmed and doing the best they can. Those folks have less ability to stand up for themselves, are very often less emotionally resilient in the face of hostility and so forth. > Also, do you think that Andy would be able to address as many sick > peoples' questions if he were busy considering and reconsidering his > wording for the sake of everyone's emotional needs? I am not interested in suggesting that Andy do any such thing. Andy has a goal of improving on his track record. I am willing to try to support that. I don't tell my own kids how to live their lives. Why would I want to tell Andy how he should behave? Most likely, if there is anything he can get out of my remarks, it is insight, not advice. That insight might help him reach his goal. Advice is not really likely to. Based on > everything you've written (that I've read) I consider you to be a > very special, loving, and considerate person. It is people like you > who serve to balance the style of others who express themselves > differently. But I don't think I am loving and considerate and all that. I do what I do because it is practical. Having the patience and self restraint to refrain from blurting something asinine can save weeks or months worth of trying to undo the damage -- or years of simply hurling blame back and forth while the problem deepens. I listen to how frustrated other parents are with their kids talking back to them and their kids fighting amongst themselves and the ugly, embittered divorces and so forth and I think to myself " I have too many problems to put up with that. I would have died if I did things that way. " Most people spend a lot of time pointing fingers and saying " he started it " -- both sides usually believe with great conviction that the other person started it. I look at such situations and wonder how to end it and realize that pointing fingers only keeps one stuck. Ending it usually involves acting " loving " and " considerate " . I am not necessarily being " considerate " of others. Sometimes I am just too impatient to put up with weeks or months of utter bullshit I know will ensue if I behave otherwise. > > Best Regards, > > Thanks. Michele Quote Link to comment Share on other sites More sharing options...
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