Guest guest Posted December 17, 2001 Report Share Posted December 17, 2001 Have you thought about taking some of the articles from the neuroimmunedr.com site and taking them to the teachers for their information? Kathy -NNY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2001 Report Share Posted December 17, 2001 The majority of parents who stay on this list have children who are getting better or are already normal. They don't have to stay on this list to answer questions but they do on a voluntarily basis for one reason and one reason only. They want to help others. All of the volunteers for the organization do all of their work for the same reason. Every once in a while we get a parent on the LISTSERV whose main goal seems to be to attack. Anybody and everything. Sometimes it is from a sense of frustration sometimes because their own life is so hard, sometimes because they seem to like creating chaos. The protocol does work and it is unattainable for the majority of people. The protocol is tailored to each individual based upon their history, physical, and test results. This a concept that is not difficult to understand but how to accomplish it is difficult unless you have the medical background. While there are some commonalties actual treatment will vary. There has been a question about antifungal use. The answer is some children are on antifungals for a long time some for only a few months. Some don't need them at all. some stay on the same one some alternate every 6 months. Some are on long term maintenance some are not. Some tolerate the antifungals some do not. The LISTSERV is for people who are engaging in discussions about and related subjects. The majority of parents who are on the list get off of it after their child begins therapy because " they have a life " as someone on the list once so aptly put it. There are some of us who stay on the list to help out but answering the same questions over and over again when all of the information, in great detail, is on the website is quite tedious. We would be a lot more popular if we blamed spectrum disorders on something (the CDC and immunizations) or prescribed, over the web, things that you can easily obtain in a health food store for a nominal fee. We can't. The protocol is medicine and can only be used by a licensed physician. The office costs are not prohibitive but the lab work which is essential in making the diagnosis and the medication, which might be needed for years, is very expensive. The neuroSPECT is also expensive. These are all realities. The parents group are working very hard to find ways to make this treatment accessible to more people and to make it less expensive. Some of us have given up lucrative careers to devote themselves entirely to . All of us do it in addition to all of our other responsibilities. Attacking us is not going to help anyone. It does take up time that could be spent in a much more fruitful manner. If you want your child to benefit from the protocol help us! Read the websites before you ask your questions. You will find your answers there. If not phrase your question in a civil manner. You will get a response in a civil manner. Attack and may receive the same thing in return. We are nice people but we are only human! If you are from another organization and your role is to attempt to discredit us think about using that energy to make your child normal. Remember our statistics...Kathy -NNY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2001 Report Share Posted December 17, 2001 I already did that. Thanks. They read them and asked for anything else I could give them. Tina was nice enough to send me some brochures and I've distributed some of them as well. On Mon, 17 Dec 2001 10:47:21 EST JOSKAT95@... writes: > Have you thought about taking some of the articles from the > neuroimmunedr.com > site and taking them to the teachers for their information? Kathy > -NNY > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2001 Report Share Posted December 18, 2001 I think the point that I've been trying to make about the communication between Dr. Goldberg is being misunderstood. My son's physicians are supportive, but they have questions. They are willing to talk to Dr. Goldberg, but that's apparently not realistic. (No one's yet answered my question with an enthusiastic " Yes, Dr. Goldberg is willing to maintain occasional contact with my child's pediatrician.) Short of that, opening up " the protocol " to other physicians might suffice for the kind of communication that normally takes place between consultants and treating physicians when there is ongoing care being provided. This is what I'd really like people to understand: It is hard enough for this kind of innovative care to be accepted in the medical community...I just don't think it's wise to put supportive physicians this far out of the loop. Think of the countless times you've heard someone say that their physician is cynical, critical or negative about Dr. Goldberg and his treatments ....a physician who is *reluctant* to support a family who also sees Dr. Goldberg. If the treating physician isn't getting good communication from the consulting physicians or isn't kept in the loop with respect to the medical decisions being made, he isn't ever going to be supportive in a way that is constructive for the child involved. In the long run, and even in the short run, keep the treating physicians at bay does more harm than good for kids and for the organization. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2001 Report Share Posted December 18, 2001 why don't you ask your doctor to pose his questions on a chat session?? Re: Re: Protocol > I think the point that I've been trying to make > about the communication between Dr. Goldberg > is being misunderstood. My son's physicians > are supportive, but they have questions. They > are willing to talk to Dr. Goldberg, but that's > apparently not realistic. (No one's yet answered > my question with an enthusiastic " Yes, Dr. Goldberg > is willing to maintain occasional contact with my > child's pediatrician.) Short of that, opening up > " the protocol " to other physicians might suffice > for the kind of communication that normally takes > place between consultants and treating physicians > when there is ongoing care being provided. This > is what I'd really like people to understand: It is hard > enough for this kind of innovative care to be accepted > in the medical community...I just don't think it's wise > to put supportive physicians this far out of the loop. > Think of the countless times you've heard someone > say that their physician is cynical, critical or negative > about Dr. Goldberg and his treatments ....a physician > who is *reluctant* to support a family who also sees > Dr. Goldberg. If the treating physician isn't > getting good communication from the consulting physicians > or isn't kept in the loop with respect to the medical > decisions being made, he isn't ever going to be > supportive in a way that is constructive for the child > involved. In the long run, and even in the short run, > keep the treating physicians at bay does more harm > than good for kids and for the organization. > > > > > > Responsibility for the content of this message lies strictly with > the original author, and is not necessarily endorsed by or the > opinion of the Research Institute. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2001 Report Share Posted December 18, 2001 > why don't you ask your doctor to pose his questions on a chat session??< Thanks, that's a good idea...I'll see if one would make herself available. I've only attended the chat once....is Dr. Goldberg routinely attending? I'd hate to invite them to attend, and then not have him available. Do many physicians participate in the chats? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2001 Report Share Posted December 18, 2001 In a message dated 12/17/2001 1:11:30 PM Central Standard Time, JOSKAT95@... writes: > We would be a lot more popular if we blamed spectrum disorders > on something (the CDC and immunizations) or prescribed, over the web, > things > I must have missed something. I haven't really seen the attacks as you describe. Perhaps I am not getting all posts again. As a parent who has been dealing with the a severely affected child for over 3 1/2 years--just since diagnosis-- I can tell you why the DAN protocol is more popular for the time being. It is precisely as you said because parents can obtain some of the things--not ALL--at local health food stores--and not always at nominal fees. (Believe me, I have spent thousands of dollars on that cr_p!) The reason for this is because it is sooooo difficult to get doctors to participate. When you live in small towns in the places where the majority of people don't hold a high school diploma, you feel--and usually are--totally alone in helping your child. Doctors look at you like you are kidding yourself or like you are on the spectrum as well. " Don't have false hope! " You look around and even other parents of children on the spectrum say things like, " Why bother. It's not going to do any good. " So, you latch on to anything you can get. If someone who seems like they might know says " give them Vitamin A, " you do it. And you pray. And the big problem is that there are more people like this than people who are fortunate enough to live in an area where they have easy access to these doctors or who are fortunate enough to have the money to fly to California to see Goldberg himself. And until we make it possible for anyone with a spectrum child to go to their doctors in their hometowns and get treatment under the protocol, people will continue to be frustrated and cynical. Respectfully, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2001 Report Share Posted December 18, 2001 If you missed the posts you are lucky! I could not agree more with what you wrote. Kathy -NNY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 There is nothing magical anout Dr G's " protocol " . The concept is the practice of good immunologic medicine which Dr G embraces and has pioneered in our kids. As with other " protocols " it " works " in a subset of kids in which we do not yet know who responds. This is our next challenge in treatment. Understanding who responds to what. Unfortunately Dr G has yet to document his successes in any systematic way. Yes Virginia, the treating the underlaying biology is essential, this is what the common pediatrician has to recognize and with a little research effort on their part they can get on the bandwagon. Its not a secret but it takes time, time that a busy pediatric doc may not have or particular interest. Lovemykiddo wrote: > I think the point that I've been trying to make > about the communication between Dr. Goldberg > is being misunderstood. My son's physicians > are supportive, but they have questions. They > are willing to talk to Dr. Goldberg, but that's > apparently not realistic. (No one's yet answered > my question with an enthusiastic " Yes, Dr. Goldberg > is willing to maintain occasional contact with my > child's pediatrician.) Short of that, opening up > " the protocol " to other physicians might suffice > for the kind of communication that normally takes > place between consultants and treating physicians > when there is ongoing care being provided. This > is what I'd really like people to understand: It is hard > enough for this kind of innovative care to be accepted > in the medical community...I just don't think it's wise > to put supportive physicians this far out of the loop. > Think of the countless times you've heard someone > say that their physician is cynical, critical or negative > about Dr. Goldberg and his treatments ....a physician > who is *reluctant* to support a family who also sees > Dr. Goldberg. If the treating physician isn't > getting good communication from the consulting physicians > or isn't kept in the loop with respect to the medical > decisions being made, he isn't ever going to be > supportive in a way that is constructive for the child > involved. In the long run, and even in the short run, > keep the treating physicians at bay does more harm > than good for kids and for the organization. > > > Responsibility for the content of this message lies strictly with > the original author, and is not necessarily endorsed by or the > opinion of the Research Institute. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2001 Report Share Posted December 21, 2001 Marc, Very well said. Thank you! Tina M. Hendrix Cure2000@... Vice-President, California Coalition Neuro-Immune Dysfunction Syndromes Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2001 Report Share Posted December 21, 2001 Let me say, it has been obvious to me, thus far, that what is on Dr. Goldberg's website, though far reaching and of interest, is not exactly scientific or of use to other pracitioners.With that info alone available to the public, Dr. G's cause is poorly served. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2003 Report Share Posted March 4, 2003 ++Please respond off list to EZHILFLORA@... PROTOCOL Hello, Has anybody in the list done the protocol with Dr. Goldberg, and if so can you let me know on both positive and negative, and also does he travel to meet patients, any info is greatly appreciated .Thanks. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.comGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
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