Wilma Jenks
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Posts posted by Wilma Jenks
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it is getting to be worse since the seroquel was stopped. we stopped the seroquel cause she was getting the weird thing where she just stared at the ceiling. she kept getting stuck all of the time. we are having a very tough time over here. any advice is welcome.
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has anyone had a bartonella child, that had severe severe ocd, and saw it get better eventually with abx. alone??? she is tolerating the abx. and i see her a bit calmer, but ocd at night is still bizarre. doctor wants to add something for sleep to knock her out. he said if you get sleep under control, it can help the ocd. i really wish we could go right to ocd meds.
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Thinking of you and your loss + a sick child. It tough, I KNOW!!! I am praying for you....
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i just don't think seroquel is for her. she was only on 6mg. and it made her less aggressive, but i could not stop her from staring at the ceiling. it was really weird. everytime she says something that she thinks is not very nice, she stares at the ceiling even without seroquel, but when on seroquel, she gets stuck looking up and can not even walk. ugh!!! right now she is just on the bactrim and minocycline. it is not making her aggressive like all other supplements and meds, but she is just stuck staring at computer. she is showering though. she has been on this for for about 3 months, and i see a little tiny bit of improvement, but it will probably take a really long time since she has been sick since birth. i just need to get her out of the house. the pdoc is trying something else for sleep. he said sometimes when they get good sleep, the ocd gets better. i am hopeful but so dang sad for this beautifule girl. she is either bouncing off of the walls or or stuck in her OCDish world.
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we had her on 6mg of seroquel for sleep and agression but it made her sleep way too long in the morning. melatonin use to not get her tired, but now that she is on bactrim and minocycline, it works at putting her to sleep, but she does not stay asleep. what does everyone use for extreme insomnia for the little ones???
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ugh! i need to try something. i just can't get her well....she is so stuck. non-functioning. i don't see her freaking out on these abx. which is a good sign i guess, because she usually gets violent with everything we try, but she still has really bad ocd and is so stuck. i am so confused and try to figure out if the meds are making her worse or are they helping. it is so hard to remember all of her symptoms, reactions etc....it is crazy and a long 12 years with not much help. how she is going on about 3 months of antibiotics. do you give up after 3 months and say the abx. are not helping??? its so depressing.
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the doctor has my girl on a very low dose of bactrim and minocycline, since she can not handle the normal dose. does anyone know if this low dose will kill the bugs? he has her on half the dose at the moment. she has this weird ocd thing where she stares at the ceiling whenever she says something wrong. we can be at the store and you can't budge her cause she is stuck. she just keeps getting stuck. i thought is was the 6mg. of seroquel that was making her do this, but i think her ocd just keeps changing.
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when not on any medication, my girl bounces off the wall and speeds around the house so fast...that she needs a tv or computer to focus on-just to get her still. she has bartonella and is on bactrim and mino.
the pdoc. wants to try ADHD medications. anyone ever try these with there bartonella kids?
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We never had any adverse effects from bactrim, but some people have sensitivities to the sulfur in it (or is it sulfa?). Don't know much about it but thought I'd mention it as something to look into. My kids are too young to use a cycline abx as their teeth are still developing.
Given your daughter's extreme sensitivity to so many things, it's possible the low dose path that you're on may need to be the norm for her. If her symptoms are manageable, it may be a matter of riding out the storm. I would also make sure she's doing a lot of detox.
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I saw sleep get better with the bactrim, but then when i got to full dose, it made her ocd severe and she started sweating and had a rapid heart beat. it was like she was over dosing. doctor lowered it and she is much better. she is a bit aggressive and i am not sure if its the minocycline or the bactrim doing this. anyone have any experience with any of these abx.? thnx.
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I am going to have to get a seprerate credit card for all of her medical bills, because money is soooo tight. Does anyone have one that they use? or give me some advice. Thanks so much. Haven't been on much lately, because now my husband is very ill. Ugh!!!!
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can you email me and tell me what to expect or give me some advice. thanks so much.
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Thanks for asking...
I added in a pinch of inositol and it is helping. A year ago, we tried inositol and it always made her more confused and worse. This time, while she is on the abx. the inositol is working. The only thing I can think of is that she is getting better with the abx. because it is finally addressing what is wrong, which is bartonella. This is amazing! She actually enjoys playing with other children and does not abuse them anymore. I am so thankful to you guys.
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My child has tried the bactrim biaxin and minocycline. None have helped the OCD. Please tell me if it is time to try psych. drugs again.? Has anyone had to try even more that this to try to help the bartonella? Please give me some advice. Feeling really down 2 night. She can not get from the bathroom into her bedroom because she has so many rituals on the way (hopping, grunting, rolling her eyes ect..) that it takes for ever to get there. It is just horrible to watch.
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I tried the celexa and it made her way too hyper, but it was at a time that she was not being treated with the abx. Perhaps if I add it in now...she would tolerate it. We also tried Luvox, but it made her really uninhibited. Right now she is suffering so much. It seems some OCD got worse, but some got better. I get so confused as to when to try something new. When she was on no medications at all, she was non-funcitoning. She would stare at the TV computer all day, only to come out once in awhile to pull my shirt or tease the do, or run into the street. So things are more tolerable. I don't get attacked, she is able to play with kids without teasing/squeezing them. Ugh, I just don't know what to do. I have a call into the doctor.
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Started Bactrim 2 months ago. it helped with sleep, but was mean on it, and still stuck in her little OCD world. I added minocylcine (2months) and she got nicer. She is tolerating these meds, for the first time ever. (every med. she has tried made her violent. i see her showering, which i could never get her to do, but it is OCDish. Now I can't get her out of shower. She is playing better with other children. she is doing some crafts. So I do see some improvement, but her OCD is still really very bad. It use to be severe at bedtime, and a bit better during the day, but it has swtiched. Now its bad during the day and better at night.
i see a pdoc. that deals with lyme kids soon, and I am hoping that he can add something for the OCD. It is too bad, to not give her something. Anyone with similar situation and what are you giving for the OCD? TU
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I give:
8am ....... Minocycline (on empty belly, with lots of water)
10am.......Bactrim
3pm.........Minocycline (on empty belly with lots of water)
7pm.........Bactrim
9:30pm.....2 Melatoin, and 6mg. of Seroquel.
10PM........Sprinkle of Culturelle
Pharmacist said:
to give seroquel 2 hours apart from probiotic.
Minocycline should be given on empty belly and 2 hours away from the bactrim. Does this sound right? Does anyone give 2 abx. together?
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Yes. same person. Just having a backwards moment!!! LOL
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i am dealing with the bartonella thing to. i think we are on the right path.
we tried the bactrim and i saw sleep get better
added biaxin and dr. took her off because of severe pain in legs
added in minocycline. she seemed happy and pretty good for awile, but now ocd is starting again and intrusive thoughts. the doctor thinks its the minocycline, but she had racing intrusive thoughts since the beginning. ugh? it is so confusing. the ocd is coming back too. he now wants to try cipra or something like that.
i hope it works
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my girl has been sick since birth. she is 12 and barley functions. :0(
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is anyone's child house bound because of lyme/bartonella? my girl is just stuck in front of computer on one certain show and does not budge. i hope this changes with the bactrim and minocycline. she was looking better on this stuff but is becoming stuck with ocd starting up again.
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i need to take some on vacation with me. can they be out of the fridge for half a day, until i get there???? or should they be refridgerated?
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added the minocycline and she keeps telling me to shut up cause she can't think straight. she snaps at me and scares the ###### out of me, cause it comes out of know where. she is only on one pill. she needs to take 2 a day....she is stuck in front of computer watching one show over and over. please give me some reaassurance.
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I am in NJ close to family, which in hepful, but there are so many tics. Where do you run too??? I hear there are tics even in Brooklyn??? Is there anywhere safe/safer???
OCD getting better with just Abx.
in PANS / PANDAS (Lyme included)
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isn't there a chance that with ivig, you could get blood that has the bartonella in it?