trintiybella

This is horrible. I will send this link to everyone I know.

Yes. Severe brain fog and severe confusion. Would I go to another nuerologist for their opinion?

Dr. N. said all tests came back fine but I am starting to read through everything and saw this. It struck me as something not right. Can you tell me what you think???? and also are they saying to get follow up tests??? Thanks Findings: The cerebral blood flow is mildly diminished in the right posterior temporal lobe and in the lateral left anterior temporal lobe. The remainder of the cerebral blood perfusion is within normal limits. Mild right posterior temporal lobe and in the lateral left anterior temporal lobe hypoperfusion as above. This finding is nonspecific and may be seen with vasculitis of infectious, inflammatory, autoimmune or drug-related etiology. Correlation with perfusion scan during ictus is recommended to increase specificity of the aforementioned findings. It also says this: Discharge Diagnoses: Principal Problem: Abnormal EEG Active Problems: OCD History of depression Hx of migraines etc... Looks like she had abnormal EEG, right? They said all was well. I don't get it

my child can handle the minocycline and there is some improvement on it, but the bactrim is a no go...wondering if anyone ever used minocycline alone to treat lyme/bart? thanks

I don't see too many people signing the petition. This is so important and scary and could be your child. Shouldn't we all be signing this???

Would be nice to get a group going here. Anyone around this area? Thanks!

Does chelation help with our children or it it just for heavy metals? Thanks! Has anyone tried it???

Can you please tell me where you buy your oxy powder and what strength you use? Thanks so much.

Can you let me know what you used to do this?

Have you actually used the bravo probiotics? Thanks for the help.

Has anyone's child ever had a fecal transplant?

I am just wondering for the future. Doctor wants to start vancomcen and at some point other doctor wants to try higher dose of minocycline. Can these two be given together as far as you know? Thanks

Since I can't get a call back from Dr. N., office, even after I offered to pay to speak with him for 5 minutes, I will have to ask you guys a few questions if its fine! I am not sure why, since I have been very patient and did not bother them one bit. They even complimented me on being patient!!! NOW I will turn into devil mom if I don't get a call back, but first I have to decide if it's worth it or should I just move on.... My childs, EEG, Spect and Blood work @ NYU was normal. Does this rule out autoimmune & brain inflammation??? (Still waiting for my copies to be available in portal) Can Dr. N. be certain there in no brain inflammation and autoimmune disease? If so, why is his nurse telling me to see their psychiatrists that deals with autoimmunity? My child tested positive for bartonella and lyme. Isn't there always inflammation in the brain with this and are these tic born illnesses considered autoimmunity disease:, and wouldn't a lumbar puncture prove this? I am wondering why Dr. N. mentioned doing a LP at the beginning but after seeing all of her tests, he never mentioned it again. Right now things that make help my child with severe insomnia all seem to be anti-inflammatory's. (Minocycline, motrin and black walnut oil.) I thought the black walnut oil was killing parasites, but I have read that it works on inflammation too. My suspicions after testing these things is that it is helping her inflammation. Just don't get why Dr. N. would not push for LP to tell us more. Should I insist and keep pestering for an appointment with Dr. N., in hopes for a LP? or should I just move on with Dr. B (Rheinbeck NY) to deal with this mess.

I moved to NJ 3 years ago and registered my child in school, because I thought they could help send tutors into the home (sine my girl is not able to come out). The tutors come but my child isn't able to come out of room. I have to check in with the school every month and it is a nuisance. I want to tell them I am going to start homeschooling because I am not able to use any of their services anyway. It is also too much stress to have them constantly asking if my child is well yet and when she can come to school. They are very nice and have tried really hard to help me, but they really have know clue how sick my girl is and they don't understand why. They said "even kids in wheel chairs wearing diapers make it to school." Anyway....before I decide to tell them I am going to homeschool, should I speak to someone about legal advice? Any advice is welcome. Thanks

Can you please tell me what protocol you have tried and if you have seen success? Thanks

My daughter, who has chronic constipaiton, has been regular for four days in a row on align. Hope it lasts, and hope this helps others.

Then why don't they just give my child minocycline for her bartonella and lyme. I am constantly told she needs 2 antibiotics. Just curious.

Yes, Dr. J. in Conneticut..

No. I will try them. Thanks/

Great, thanks!

I swear every time I try this stuff she gets more violent.

How does motrin compare to minocycline as far as touching brain inflammation? Probably no comparison, right?

They are sending me copies. Very frustrating.

All the tests came back fine on my child and Dr. N. wants us to see psychiatrists in his group. I would really like to have a follow up visit with Dr. N. anyway to discuss some things. For one...I am a bit confused that at our initial visit he said it's probably brain inflammation, and now he does not mention that. Is he able to tell that there is no brain inflammation with the spect scan??? He did a lot of blood work too. Perhaps he can tell from that???? Regardless...he is sending us on our way. Wish he would do a spinal tap. Any comments are welcome.

Doesn't it also kill strep or some other bacteria?