trintiybella Posted August 3, 2013 Report Share Posted August 3, 2013 it is a letter to beg for him to see my child, that i can not get any relief for after 13 years. can i send you a letter to see if is sounds ok? Link to comment Share on other sites More sharing options...
PowPow Posted August 3, 2013 Report Share Posted August 3, 2013 I would not mind trying to help you. Did you find out any thing from the genetic testing Dr.T did? Maybe when you find out what that is, Dr N may not be the best choice, though he may be. Feel free to PM me. Link to comment Share on other sites More sharing options...
trintiybella Posted August 3, 2013 Author Report Share Posted August 3, 2013 Just that she has CDKK5 mutation and wants her to have EEG. I will pm you. Thanks! Link to comment Share on other sites More sharing options...
trintiybella Posted August 3, 2013 Author Report Share Posted August 3, 2013 CDKL5 I meant Link to comment Share on other sites More sharing options...
tpotter Posted August 3, 2013 Report Share Posted August 3, 2013 I was just looking over your DD's list of symptoms, and noticed that it was positive for bartonella (which is what I was going to suggest you check). Did you completely treat for that? Also, did she test positive for mycoP? The reason I ask is that she sounds remarkably like my DS, who was positive for both (actually the mycoP was "only" high in IgG, but I had the high IgM, and everytime my IgM went up, his IgG would skyrocket, which meant that he had it, too. My DS has had all the same symptoms you list, but we really started getting more solid gains when we started ART and homeopathy. So, here's my suggestion (and it's only my personal opinion.) If you haven't already tried ART or homeopathy, I would do it. The thing with ART is that, although we have found much more expensive, they do take you through step by step, so the herxing was way less severe for us. Also, ART can tell you what you've actually got. But, that being said, homeopathy also works really well if done right. PM me, and I will give you considerably more of my personal opinion. Not that I don't think Dr. N. is wonderful, but from personal opinion, I think there may be other things you can do. Link to comment Share on other sites More sharing options...
pr40 Posted August 3, 2013 Report Share Posted August 3, 2013 tpotter -- I try to google abbreviation people use on this forum. with ART that is impossible. so, what is ART? Link to comment Share on other sites More sharing options...
PowPow Posted August 3, 2013 Report Share Posted August 3, 2013 Trinity, Have you looked up rett syndrome? Or forme fruste rett syndrome? are you getting the EEG soon? Can she read, is she intellectually normal? Growth normal? NancyD 1 Link to comment Share on other sites More sharing options...
tpotter Posted August 3, 2013 Report Share Posted August 3, 2013 ART = Autonomic Response Testing. Also look up Klinghardt, as he is the one who came up with it. Link to comment Share on other sites More sharing options...
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