Guest guest Posted November 17, 2000 Report Share Posted November 17, 2000 Prayers and thoughts to and Skyler and to AJ! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2001 Report Share Posted April 10, 2001 Please understand, I am NOT trying to be obnoxious or inflammatory here. I am just trying to get information. How would those of you who have experience with this protocol respond to the following which was sent to me by an acqaintance " in the trenches " ? " HI - Yes, I'm familiar with Goldberg. While I agree w/ the idea of of neuroimmune (obviously), I don't agree with his way of doing things. Every kid gets the same treatment - antiviral after antiviral and SSRIs. I know a few people's children who were on antivirals for MONTHS (> 1 year) and only got worse. The guy refused to admit that they did not have viral infections, just upped dose or changed antiviral. Some kids have had bone marrow suppression from the long use of antivirals. I don't understand why he has kids get all this testing done only to do the exact same thing with all of them and basically ignore test results. I think his wife had chronic fatigue and it ended up that she had viral infection, so he applies it to every kid now. He also is trying to raise $750,000 for his " research " ! - which is all just trial and error. " __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2001 Report Share Posted April 13, 2001 Hi To respond to your question about your acquaintance in the trenches I don't think Dr. Goldberg accepts to treat anybody without doing blood work. Every child is different and some children have more immune problems than others. The protocol will not work by itself. I know parents who tried it and abandoned it. But those parents did not work with their children, did not do ABA, did not find time to work day in and day out with their child. One parent cheated on the diet left and right and of course the child did not progress but rather regressed. You have to look at the whole picture. Everyone has viruses but some are more active than others. The blood work reveals more than just active or non active viral infection. It gives a picture of the whole immune system and how it works for that particular child. My son has been on anti viral for almost 3 years and guess what happens every time we try to cut the dose or take him off? Up every night, thrush around his mouth and lips. Redness like a clown all the way up to his cheeks. I have not known Dr. Goldberg to play with children's lives or to play russian roulette with them. He is very concerned about their well-being and will not prescribe unnecessary medication. As a matter of fact (others please correct me if I am wrong), if the child is doing very well he tries to minimize the dosage till gradually they are off medication and keep doing well. Your acquaintance should ask the people whose child got worse if they followed the protocol and send in updates and phone consults every month. My son was on amphoteracine B and was walking like a drunk, no eye contact, no attention span. I called and immediately we went back on Diflucan and in 7 days he is a different child. Dr. Goldberg will respond to parent's feedback and concerns. Good luck Mercy Hirzel wrote: > Please understand, I am NOT trying to be obnoxious or > inflammatory here. I am just trying to get > information. How would those of you who have > experience with this protocol respond to the following > which was sent to me by an acqaintance " in the > trenches " ? > > " HI - Yes, I'm familiar with Goldberg. While I > agree w/ the idea of of neuroimmune (obviously), I > don't agree with his way of doing things. Every kid > gets the same treatment - antiviral after antiviral > and SSRIs. I know a few people's children who were on > antivirals for MONTHS (> 1 year) and only got worse. > The guy refused to admit that they did not have viral > infections, just upped dose or changed antiviral. > Some kids have had bone marrow suppression from the > long use of antivirals. I don't understand why he has > kids get all this testing done only to do the exact > same thing with all of them and basically ignore test > results. I think his wife had chronic fatigue and it > ended up that she had viral infection, so he applies > it to every kid now. He also is trying to raise > $750,000 for his " research " ! - which is all just trial > and error. " > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2001 Report Share Posted April 13, 2001 Hi , I think that Mercy brought up some very good points. I've known some parents who didn't take the diet serious and thought little cheats were no big deal or they were giving supplements on the sly or doing other things that could have interferred with the treatment. This is also not the most ideal or easiest way to address these illnesses which is why we want the trials and access to more direct treatments. I did a little research on the type of antivirals that we use and could find nothing on bone marrow suppression. I did find things on a more toxic one and also on meds for retroviruses which we are NOT using. Interestingly there were also quite a few things that came up on viruses causing suppression. So I'm not sure how that conclusion was made. Cheryl _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2001 Report Share Posted April 16, 2001 Very easy to respond to. As a person who has a copy of the protocol and a stack of medical records of KIDS in front of me all I can say is that the statement is incorrect. While the kids show similar trends with blood work they are not exactly the same in their results and obviously everyone's history and physical is not identical therefore the drugs chosen which are based upon the former are not going to be identical. As the child responds and grows drug dosage has to be changed. As to the length of treatment, well if you have TB, or HIV, or cancer or many other kinds of serious diseases you are on strong drugs for extended periods of time. Once our drug trials are complete we may be able to shorten the length of treatment. When I first started out in TB 3 years of treatment was not rare and now because of newer drugs we can sometimes treat for a year or less. The protocol is new, it will be refined. Autism is a serious disease. By the time a child gets to us they have had it for several years. You don't kill a Panzer with an M-1 you have to use a Sherman (several or many of them) or one Abrams! Kathy -Northern New York Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2001 Report Share Posted April 16, 2001 There is no such thing as a non toxic drug. Kathy -Northern New York Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2001 Report Share Posted April 17, 2001 ***There is no such thing as a non toxic drug. Kathy -Northern New York*** Kathy, Your statement just isn't true. Both Nystatin and Peptide-T are non- toxic according to FDA testing requirements. If you mean to say there is no such thing as a drug without side-effects at any dose, that might be different. FWIW Jeff Quote Link to comment Share on other sites More sharing options...
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