trintiybella

It says herpes is "high" but I was wondering are these antibodies that are high or are they titers. Thanks!

she is falling asleep earlier but her legs flail and her eyes open and close. she has abnormal EEG, but no seizures. She has RLS too. Here are the ingredients in goldenseal. What do you think put her to sleep, because I want to add it in. Thanks We tried 7 seizure meds. and nothing worked. Ingredients in goldenseal are: b-complex vitamins, biotin, calcium, candine, chlorine, choline, chlorogenic acid, inositol, iron, lignin, manganese, PABA, phosphorus, potassium, vitamin A, C & E.

she is falling asleep earlier but her legs flail and her eyes open and close. she has abnormal EEG, but no seizures. She has RLS too. Here are the ingredients in goldenseal. What do you think put her to sleep, because I want to add it in. Thanks We tried 7 seizure meds. and nothing worked. Ingredients in goldenseal are: b-complex vitamins, biotin, calcium, candine, chlorine, choline, chlorogenic acid, inositol, iron, lignin, manganese, PABA, phosphorus, potassium, vitamin A, C & E.

Thanks Mayzoo!

I am making my files into pdf's but it keeps saying wrong format. Any advice?

Trying to read up on these doctors. I need to decide which one to take my girl to. she cant do tons of supplements and drugs because she's so sensitive. We also lost control of her diet, that she's been on since 3 (which never seemed to help anything in our case.) she's done with all of it! That being said...which doctor is more flexible and will try to work with us??? She has Bart. /Lyme, viruses and I think parasites but not tested. Thanks for ur opinion?

She tested possitive for lyme and bartonella on test about a year or two ago....On subsequent tests they were negative. I learned that if a person only tests once for bartonella, they have it and it should be treated aggressively. OK, so I am treating it. Now all of these viruses are showing up. She was put on valtrex by Dr. T., but from what I have heard, viruses can't be treated. There dead. So I am wondering why he put her on valtrex. I have phone consult on Thursday, but just wondering....And how did get all of these viruses at birth???? She was sick from first day of life. I am going to get checked. Probably from me, I am guessing, right? Also...is bartonella the culprit, and all of these viruses are just able to bombard her because of the bartonella? I am trying to understand all of this. She probably has parasites too!!!! Thanks.

Dr. T. said lower vitamin D, and he was right. It was wayyyyyy to strong for her. She was on 10000 ui, I now have her down to 4000 ui. It has been crazy over her!!!! She was buzzed and WIDE awake for many many many days. Thank God she slept by 2am last night. Late, but at least not up for 72 hours. Thanks so much everyone.

Dr. T. said lower vitamin D, and he was right. It was wayyyyyy to strong for her. She was on 10000 ui (LLMD wanted her on 10000), I now have her down to 4000 ui. It has been crazy over her!!!! She was buzzed and WIDE awake for many many many days. Thank God she slept by 2am last night. Late, but at least not up for 72 hours. Thanks so much everyone.

I have all of her medical records on my computer. I study them frequently! I have found things that doctors have overlooked, so I get what your saying. That is a good idea about having the doctors call him. I am going to send her medical records to secretary too since she was super ADAMANT and would not budge about me getting in for an appointment! Thanks. I also just spoke to Dr. T., and he said lower vitamin D3. Her levels are only up to 44 but it is the one thing I have been raising for the last two weeks and things keep getting worse and worse. Perhaps it's just too much too soon. Not sure. Thanks so much.

Great suggestions. I will call Dr Horowitz now. What is a.e. work up Anna?

She keeps insisting I see Psych. Nuerologist. I insisted it was not a psych. problem and would send her psychiatrists notes stating this. She insists I send all medical records from 2012 to review them so she can present them for the doctors to make a decision. Right now all I have it a possitive test for lyme and bartonella, some blood work that shows Vitamin D3 levels=11, and not much else. Her tests are alway fine. I have old EEG's but she doesn't want them. How can I make my case to get into to see this man? Should I have psychiatrist call or Dr. T. or one of her doctors call them?? Thanks for any help.

It's not drugs keeping her up. Been like this since birth and getting worse. I need to get her somewhere. I will get on phone with Dr. T., and sort this out, or Dr. J. .... Can I ask you guys something? The only thing we have not looked into is parasites. Black walnut oil has put her to sleep at times, but there were so many other symptoms that it did not help that I just concentrated on bartonella etc..... Could a parasite be attacking her brain??? I see that labcorp has blood tests for parasites. Is that the way to go? or stool, or just treat for them and see what happens. Just gotta keep trying everything. She is actually sleeping now after like 3 days of being up. As she sleeps though.... you could touch her with a feather and she wakes. As she is sleeping her arms do really wierd flailing and she bolts up though out. So odd. Had 4 EEG's , sleep studies. Tell me what you feel about the parasite thing please???

I tried calling my insurance to see if they cover NYU. Nobody is in today. I am going to try to wait till tuesday and go right over to NYU, after I check out my insurance. there is no way i can pay big bills right now. i think she can hang on til then. i am just freaking out that the insomnia is getting so bad. i really need to get to see doctor N.

I am going to bring her to NYU. I can't wait for Dr. Latimar in August. I will not mention PANDAS. I am going to try to load her up on motrin and wait til tuesday because I hear Dr. Najaar is in on Wed., right? I know someone mentioned he's not taking new patience but we need to try. I WILL BEG when I get there. OMG, she is so awake. Nothing helping at all.

I am going to bring her to NYU. I can't wait for Dr. Latimar in August. I will not mention PANDAS. I am going to try to load her up on motrin and wait til tuesday because I hear Dr. Najaar is in on Wed., right? I know someone mentioned he's not taking new patience but we need to try. I WILL BEG when I get there. OMG, she is so awake. Nothing helping at all.

Dr. T. is doing the NMDA test for my child. It is blood work that he is doing, but in the book "Brain on Fire" they do this test through spinal fluid. Is doing it through blood accurate? or should a spinal tap be done for this. Can you enlighten me? Thanks

her main symptom is severe insomnia. azith keeps her up even more. anyone find that this is very stimulating for their child?

OMG. this is my child and it was worse weaning off prozac!!!! Give it time. My child would freak if I looked at my hair and said "stop looking at yourself, actually screamed...your ugly, and stop showing off!" She said I looked like a ghost, or I looked like a dead animal. She hallucinated. What helped a lot here with that horrible symptoms was...Vitamin D3 and probiotics. Hope this helps. The other things you mention are very much like my child too. It is not them. It always helps me when I thing about how much worse it must be for them, then me. I can't imagine how much they are suffering. I am here for you if you have any more questions about my experience. Good luck

Motrin made my girl more aggressive (like everything does) but it did help get her to sleep. I don't want to alway give it becasue I want to b able to see what abx. are working, like someone mentioned.

My daughters went from 11 to 44. Should they be higher?

doctor did a one day prescription to test for parasites. it did not help at all. does this test with this medication confirm that she DOES NOT have parasites??? Thanks

Dr. T. just sent some blood work. Can't understand the lyme part. Can I email them to someone or is there a way to post on this forum yet, without writting it all out?

Just wondering if they do differnt things. thanks

I don't know but I am so thinking of you. Hope you get answers soon.