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Need advice on bartonella treatment


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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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Wilma-

 

Different is good!

 

Our young psychiatrist says the cases with infectious etiologies are often tough to find the drugs to help. Our son has put our doc to the test!! He says he has treated thousands of kids & our son is one of the top three or so in complexity & difficulty in treating. We would be in a world of hurt without the meds. We have aborted two different SSRI's--made matters worse! May not for your daughter. It really is trial & error. We have been on smeds for sometime & then had to try something else. Geodon is the only drug in its class that has worked well for our son. He even asked to be put back on it when we were adjusting his meds just recently. It really helps with the REM sleep, as a side benefit. He wakes up refreshed. Gabapentin is a good brain calmer-downer for lyme patients. Namenda & Geodon are the two meds in the psych mix right now. Not too long ago it was gabapentin. We have aborted (meaning we didn't stay on long at all b/c they were not working, or were making matters worse) WAY more drugs than we have stayed on for any length of time. Namenda is quite often effective for autistic traits. rigidity/inflexibility/OCD/focus. I don't know if this helps at all, but PM me if you have questions.

 

Boy, that shower thing is a biggie, isn't it! Same experience here! Dawn

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Wilma,

SSRI's have helped my dd. She has Lyme/Bartonella/PITAND. Initially Zoloft helped. It only seemed to stop helping when she had a huge exacerbation. (which was when we discovered PANDAS/PITAND) In hind site, I don't think it stopped helping, it just didn't help enough. We then switched to Celexa and had some benefit from that as well.

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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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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.

I hear your pain Wilma. Unfortunately, it just takes trial and error. Does Advil help her at all? That might be an alternative you could use for a while.

 

My dd is in a tolerable place right now but it wan't long ago that she was really really struggling. The cyclical nature of this is difficult to deal with. They seem better, then worse, then better, then worse...its enough to drive us all crazy. I hope you find something to help. Even if its just a crutch to get her through a few months till her lyme/bartonella bacterial load is reduced. I wish it were a quicker fix for these kiddos. Unfortunatley, its' not. :(

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