trintiybella Posted July 3, 2014 Report Share Posted July 3, 2014 When I start valtrex she gets stuck ton one thought...she keeps asking over and over if she is german, irish, italian. If you say the wrong thing, she starts over. It never stops. Upping yeast protocol does not help When I give bactrim and minocysline she gets super focused on her weight and stops eating. When I give ability, she gets stuck on one person that she doesn't like. Long story short...I am seeing that everything we try perhaps makes her more focused and it also makes her focus more on OCD. Hard to explain myself, but without meds...she is kind of so stuck with racing thoughts and OCD so bad, that she can't shower or go to the bathroom. When I add certain meds in, she can go to the bathroom and get out of the house, but something always gets worse too. Like being super focused on one OCD thought. She is really losing weight fast from the anorexic thoughts, so the doctor wants me to back off of the minocycline and bactrim, but then she will be on the valtrex and then her one thought (around the clock) will be about being Italian, french, irish etc... Please give me some of your thoughts. Thanks! PS...I have tried so many psych. drugs with disastrous results Link to comment Share on other sites More sharing options...
SSS Posted July 3, 2014 Report Share Posted July 3, 2014 What about a high dose IVIG? With all the doctors your daughter has seen, no-one has suggested this yet? Link to comment Share on other sites More sharing options...
trintiybella Posted July 3, 2014 Author Report Share Posted July 3, 2014 We are seeing a new doctor who very much thinks she needs it. He is trying just a few things first and then he is going to try to help with getting insurance to pay for it. I doubt they will but I will steal beg and borrow and get it done! Link to comment Share on other sites More sharing options...
philamom Posted July 3, 2014 Report Share Posted July 3, 2014 (edited) Before trying for approval, I would have the doctor run a sleuth of labs looking for any abnormal results that may help your case. If your child has had any reoccurring infections (sinus infections, pneumonia), have your family doctor forward a letter that she is not responding to treatment for the infections. It helped in our situation. edit- good luck with the new doctor! Edited July 3, 2014 by philamom Link to comment Share on other sites More sharing options...
trintiybella Posted July 3, 2014 Author Report Share Posted July 3, 2014 I really don't know what other tests they would do. Between NYU, and all the doctors she goes to, she has had so many, but I will ask. This the only thing they have found on tests: Abnormal EEG, prone to seizures but no actual seizures high glutamate and glutamine Low vitamin D = 11 Restless leg syndrome on sleep study Low ferritin=17 CDKL5 Mutation Long QT Syndrome Bartonella Lyme TIBC (Iron) High but some tests say low. Weird. Clostridia Bolteae. On next test it was gone Total cortisol/DHEA-S ratio abnormal. Total cortisol is high Alka phosphate very high (260) She has low stomach acids Blood work showed very high B6 levels then another blood test said normal. CAM Kinase 166 Low white blood count, could be viral High C4A, which means inflammation Low CD 57, which could be lyme High cholesterol because of vitamin D3 deficiency (their related) High triglicerides Allergic to yeast Plasma renin quite high LDL cholesterol high ALCAT showed severe reaction to: phenols, acetaminophen, indocin Says there is a problem with M. Pneumoniae antibody. Is it gig marker. Bifidobacterium low Fungal infection on MOAT test Serine Pl low Lots of elevated viruses (EBV, Herpes, etc…) Link to comment Share on other sites More sharing options...
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