trintiybella

Yes. did the mthfr test. It said C677T Single mutation (C677T) identified and she needs folate. Is that what your talking about? Also... Rowingmom...you treated the bartonella first? It seems like the abx. that your used for bart. also work on the pandas too, right? Also, my girls test just says "positive" for bartonella. I don't see anything about titers. Dr. T. is not treating her for bartonella. She was already on the minocyline and bactrim before she got to him. He never mentioned the bartonella. He thinks it PANDAS, but I am not sure how he knows, since we only have Cam kinase of 166 to go by, and no other signs pointing to PANDAS. I also mentioned that bartonella shows up possitve sometimes and negatives other times. Does that happen to you?

Anna. Glad you were able to get him there. I was wondering something though....is his raging getting worse? He is being treated for PANDAS, right? Aren't the antibiotics helping or does he have more going on. I really feel for you. Gettingmy girl to appointments take soooo much out me. People have no idea. I get the same comment that dedee gets..."who's in charge here?" I am numb to them now. Don't have the energy to explain anymore. Good luck with everything.

Saw Dr. T. - He is doing tons more testing. My child is very sick and NOTHING puts her to sleep. Hallucintations, distorted thinking etc...around the clock. We are really not sure what it is. We have a Cam Kinase of 166, but no other indicators of PANDAS. We also had a possitive for bartonella, but then months after that we had a negative (she was on bactrim and minocycline for awhile.) Psychiatric symptoms were still there with bartonella treatment. Anyway....Dr. T. put her on 600mg of motrin 3x's p/d and she is starting to sleep. THANKS GOD!!! So it's helping inflammation, but what is inflammation from???? Right now she's on bactrim and minocycline for the bartonella and she is on the azith. for the PANDAS. (Neithere were helping with sleep, but Dr. T. said if they are not making her worse, keep her on them) My question is: what do I treat for?? Bart. or PANDAS? I don't want to keep her on all these antibiotics if I don't have to, ya know???? Hope I am makeing sense. We also had her on bactrim and doryx for awhile and when she came off of it,....her insomnia was ten times worse. That tells me that perhaps we were treating bartonella, but perhaps we were wrong and should have treated PANDAS. Not sure what to do.

When your are prescribed an antibiotic, does your doctor always prescribe a yeast fighter too, like nystatin or difucan??? Thankss

Just spoke to Dr. T. (PANDAS) He wants us in 8am tomorrow for more blood work. He said he needs to check for viruses and that Anti-NMDA thing. He said the Anti-NMDA test is usually a spinal tap but he can do blood work too. Not sure if I have that right. He said he will do more in depth testing than NYU (Najjar) I guess I will start with him.

Is this a test that traditional doctors would be willing to try. I am trying to get into Dr. Najjar in NYU again. Need help quickly

I called to get into see Dr. Najjar months ago. I told the receptionist my child's symptoms and she brushed me off quickly and rudely. She said this is not the doctor for you. I can't remember if she had Anti-NMDA checked but I recall that she may have. Dr. T. and others did tons of blood work. Does that sound like something he would have checked. I have to go through all paper work again. Klinghart is not for us then. We started with tons of concoctions etc. We need immediate help. Shes still up. its always been like this but got so much worse

We need to get somewhere fast. Are you speaking of Dr. T. in Ramsey? She is still up and not looking good. Very odd behaviour. I need to get her somewhere quickly. There is also Dr. Bou. in Conn. The thing is I don't know what is wrong with her. She had a Cam Kinase of 166 but no other signs of PANDAS. Was possitive for bartonella but then negative. I am not sure what to do. I am really nervous about hospitals because we started out at Children's and they looked at me like I had 2 heads, when I explained her symptoms.

She probably would not be alive today if she just slept and hour a day. But she never looks like she's sleeping. You walk past her and her eyes pop open constantly. Her arms flail in a weird way like she is doing OCD all night. She has been for two sleep studies. They showed restless leg syndrome and abnormal brain waves. We put her on miraplex. She went into a rage!!! As far as turning lights out after her sleeping pill and putting calming music on....I just don't know how to explain this, but those things are useless. You can't even get near her to calm her. Her brain fires a mile a minute, she's hallucinatiing and aggressive. When people tell me to give her an epsom salts bath and sing to her, I realize that my child is ALOT different then anyone on this board, I think. Think of someone over dosing on heroine. Dialated eyes, racing thoughts. All I can do is speak calmly, and help her through it. At those times, this kid gets whatever she wants to make it easy on her. She hates if the lights are off at those times. It scares her because she can't stop the racing thoughts and she doesn't want to try to sleep. She's petrified. This is just a little of what this poor kid deals with. I have started video taping and bringing to Dr. Bransfield. He had no idea it was so bad. I do have to add that things are MUCH better on the amphotecerin for yeast. We need to find out why she doesn't sleep though and what is really going on. Not even a yawn. I am putting call out to Klinghart. I did the NAET, the kinesiologhy etc... and no help in our case. I am not so sure this is Bartonella either. I am praying Klinghart helps. I have been all over this country trying to get help. They all just say "she's a tough case"

I realize my posts were all scattered and all over the place. At times, she is so sick that I am spinning in circles trying to get her relief. Anyway, this is what is happening.... She was on Bart. and Mino. for a year. Saw no real improvement. All supplements and medications seem to make her worse. She had SEVERE constipation too. We stopped the antibiotics for a break and doctor treated clostridia. She now poops and seems a bit more out of her autistic world. He also put her on amphotecerin for yeast, that helps her tolerate the supplements and medications better. She was calmer but she DOES NOT sleep. Up every night till 6am, and sleeps an hour. I added some lysine in out of curiosity, since I have always had herpes on my lip, and perhaps she got it at birth from me, to see what would happen and sleep improved. I have never really dealt with viruses before but I need to investigate. Our one doctor wants us to get in touch with someone named Klinghart. He said she is a very tough case. Right now...I am trying to decide my next step. Do I go to hospital, Klinghart, NIH, or what???? She has always been bug eyes and AWAKE since birth. I need some more guidance, with infections, viruses, parasites etc, but I need to make the right choice on my next step. Just kind of lost right now. We have tried lots of other antibiotics not listed. This is just a part of our story. Thanks for listening. PS. We have tried seroquel, melatonin, trazadone etc... for sleep. None work, and most make her violent. It is way more severe than that. It is a virus, infections or something keeping her up.

I know. I will clarify in a new post. I am completley all over the place AGAIN!

I have tried azith. but was wondering if bactrim or minocycline is ever used for PANDAS?

Yes, all the doctors keep saying that our case is REALLY tough. Thanks for all of the suggestions. I just needed that "second wind" to keep going. This stuff WEARS YOU DOWN. Got good night sleep last night and I am ready to go again. I will read over all the suggestions and figure out my next step. Thanks again!

can you please tell me of the combinations of drugs that can be used for bartonella that you know of. I am giving this treatment antoher try before I take her to some kind of hospital. Thanks.

How about other supplements as your doing the antibiotics. Like omega 3's...perhaps vitamin C for detoxing.....any other vitamins you would recommend?

The reason for hospitalization is that she NEVER sleeps. Seroquel, risperril, melatonin, trazadone etc....all make her violent. Antibiotics for bartonella put her to sleep in the past, but when we went back on them, they don't work anymore. We went off them to treat clostridia and to see where she is at. I just don't know what to do. She has never slept, even as a baby and it's getting worse. Our doctor just suggested NIH or Dr. Klinghart.

thanks for your help. I am really scared right now.

what would "encephalitis work up" look like? i would think with all the blood work and doctors we have been to, we have done this already?

My child is up around the clock. Not sleeping at all. Has anyone ever dealt with a major hospital that was at all helpful or "gets" any of this??? How is Columbia in New York. Please give any suggestions you can. Antibiotics that use to help do not.

I guess I give this a try. Was wondering if you have tried it or even heard of it?

Thank You. I needed to hear that. Can you tell me the combination she was on for the bartonella?

I really need to hear some stories of healing. I am quite down today..

I can feel your pain. If I wasn't so darn busy trying to help her... I would be basket case. It is so dang sad to see her life pass her by, with no relief or clear diagnosis. My thoughts are with you. Hang in there.

S&S Can you tell me what your bartonella symptoms are??? Or do you have a list? Thanks

I read some of the supplements. She flips out with the teeniest amounts of stuff. Not sure she could handle all that different herbs.