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in PANS / PANDAS (Lyme included)
Posted November 10, 2011
Did anyones child actually look like they had brain damage? and still get better with abc. Need some pep talk. It seems like the wiring is severed in my girls brain and no medication helps. Can bartonella look like this? and can she get better?
she is not able to attend school. i have had her in so many classes. she starts out excited, but her confusion and ocd are so out of control that she can not maintain the classes. so sad since she is athletic, musical, and wonderful. this sickness prevents her from so much. she in non functional. sad.
Thanks so much for thinking of me...
Knowing I am in your thoughts has given me a little boost out of this mini depression i am in lately. Seeing this little girl suffer and then look like there is hope is a roller coaster for the emotions, ya know? i am sick over not being able to stop her misery. you have given me hope again.
Posted November 9, 2011
my little girl had a friend for the whole summer. i was so excited cause she never had one. well this one is gone too, since my daughter could not stop obsessing about the little girl copying her. the girl dumped her and i am broken hearted once again. i think i feel the pain more. when will things ever get better for her. ugh
Posted November 8, 2011
what is the name of the PANDAS test, and can i order it online and do it myself or does it need to done with a doctor? thanks so much.
Posted November 7, 2011
she was seeing dr. jones but he sent us to dr. jones. no we have not done the ivig. we have another appointment on the 17th. praying for something to change. i will post more when i have time. thanks for feed back.
has anyone tried to give the bactrim or other meds. at night to avoid the horrible reactions from them? before giving up on the bactrim, i was going to try this.
i believe i read that dr. jones said babies that have congenital lyme are limp at birth etc. my child was not limp but was super agitated on day one. my child was diagnosed with bartonella. she never had earaches and is never sick. she looks so normal, except she always had dilated pupil, pale face, red bags under eyes. very distorted thinking, confusion, hallucinates. i tested positive for lyme. i have some of the same symptoms but she is 100 times worse. non functioning. sometimes i wonder if this is all bartonella.
on mood stabilizers, my child can look like the golden child in school. she is soooo stiff and sits in her seat and does not mood for fear of having her world fall apart, so they all think she is perfect. meanwhile she is obsessing about "one" thing all day long and can't learn a thing. and then comes home and is so out of control and psychotic it isn't funny. i have a support system here, but not sure if their tough enough. i will keep you posted.
Posted November 5, 2011
can you try sending me a message?
"stuck." She spends the whole day just staring at one show over and over. Or obsessing about someone she hates, over and over. Never stops. She is stuck in house and the school is pressuring me to get her there. They don't understand how scrambled her brain is. I hate them sometimes. There telling me that their worried she will fall too far behind, and I am worried that she is so damn confused that she can't get from the house to the car without banging into a tree. THEY JUST DON'T GET IT!!!!
the bactrim is making my child way too aggressive. I see her getting worse. I know others have had this happen with Bactrim. Please tell me what you tried next???? Have some of you given up on the bartonella diagnosis after lots of failures with abx. Need some support. Thanks so much. I am so disappointed. She has been on this stuff for almost 4 months. On the dose I need to get her to sleep she gets toooo aggressive. You can't live with her. Adding probiotic does not work. All meds and abx. thus far have made her more aggressive. Ugh. I hate that this happened to this lovely girl. I am so mad at the world right now. Thanks for listening!!!
Posted October 25, 2011
when i added the bacterium, it made her mean,
then i added in the minocycline and it made her less mean, but she is constantly agitated and obsessing about people that are copying her or giving her dirty looks. with these antibiotics, i saw her begin to shower and she seemed to sleep a bit better. my question is...if these antibiotics seem to help some things, but are making her too aggressive, are there other abx. that they can try that perhaps will not make her so mean and uninhibited? it is about 4 months on this stuff. when is it time to move on???
Posted October 11, 2011
the first week or two, i felt great on this doxycycline, but now i feel awful. I ache worse then ever. I heard that I would get worse at the beginning and then better, but i did not hear that i would feel better and then worse. i can't even get off the couch. any advice. motrin is not helping.
Posted October 1, 2011
my sister is on this antibiotic and feels great. no aches or pains. she has not been tested for lyme or co-infections.
my sister has so many signs of Lyme or some other TBI, but refuses to look into it. She had some blood work the other day and had a high white cell blood count. The doctor put her on Levoquin, and she feels great. Could this anitbiotic be helping Lyme or bartonella?
Posted September 22, 2011
Every time I mention Lyme to anyone...they look at me like I am nuts!!! I get so tired of this.
my neighbor, who is a very strong woman, is really being worn down by this constant ringing in her ear. Doctors can't figure out what is wrong. I think I read once that this could be a lyme symptom. Anyone ever heard of this???? Thanks
My sister can not afford to use Igenix. I really thing she suffers from Lyme or bartonella. Is there a less expensive test called CD57, and is it reliable. Also, what if she tests negative on the tests, and we really feel she has all of the symptoms of Lyme. I am sure her doctor will not treat he if the results don't come negative.
in Obsessive Compulsive Disorder
Posted September 20, 2011
azith made my child bounce all over the place and run into the streets
what other abx. have u tried for the lyme?
Whenever I add a new Abx. or up the one she is on, and she has a glass of milk the same day....it triggers migranes, and vomiting. Has this happened to anyone???
Is azith. used for Lyme or bartonella???