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How do I treat for Lyme if the meds maker her wild?


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She has a 166 on Cam Kinase. We were headed down the PANDAS path, but now we are told she tests possitive for Bartonella. She gets super wild with Azith., and her insomnia gets much worse when on Bactrim. So what do you do? We currently see Dr. Bouboulis for the PANDAS, but I made an appointment with Dr. Jones for the Bartonella. I am spinning in circles as what will help my girl.

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Hopefully the lyme doc can help you with these symptoms. I would assume she is herxing when she takes the antibiotics. They can make her worse for a while before bette.r Maybe you can start slow and work your way up to the desired dose as her body works through it. Are you having her take any probiotics or detox supplements yet?

When do you see Dr. J?

 

Susan

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I think I'd do a lot of reading up on detox before you start getting aggressive with abx, given the severity of your daughter's response to abx. You might also want to get input on other LLMDs. Dr J is rightfully recognized as a the pre-eminent lyme doctor and has probably seen it all. But there are two things about his approach that may not be best suited for your situation - first, (and this is only my understanding), he doesn't do much detox, feeling that kids bodies naturally detox better than adults. That may not be the case for your daughter. Second, he only sees patients every 2-3 months. In the beginning, I'm guessing your daughter is going to need much more frequent monitoring. So while you wait for your Dr J appt, you may want to work with someone who's known for their detox approach. Some doctors also consider "pulsing" abx instead of giving them every day. That may be another option to consider.

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It is not just Abx. that my child gets wild and aggressive with. It's all medications, suppplements, corn, chocolate, and red pasta sauce. If I stay away from all of this...she is still psychotic and very sick, but those things make her even worse. I also saw Dr. Beal...perhaps I should stick with him until I get the appointment in Sept. with Dr. Jones. Whaddya think?

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Have you tried epsom salt baths? They really calm my daughter. 2 cups (sometimes a little more) in a bath, and probiotics? Culterelle? Even if she does not swollow pills, I just open the capsulle and mix it in her drink. I do believe what you are describing with the meds are probably herxing reactions which is actually a good thing.. The medicine was this prescribes by Dr.J? Or one of the other docs? What kind of doctor is Dr. Beal?

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It is not just Abx. that my child gets wild and aggressive with. It's all medications, suppplements, corn, chocolate, and red pasta sauce. If I stay away from all of this...she is still psychotic and very sick, but those things make her even worse. I also saw Dr. Beal...perhaps I should stick with him until I get the appointment in Sept. with Dr. Jones. Whaddya think?

Wilma- my daughter is not as severe as your girl, but she does react to every supplement, abx, vitamin, blood draw, exc...so I get a sense of how difficult it is when treating. We just added vitamin D because she tested low and she reacted to it in one day. We have an entire cupboard of products that I gave up on (I should have a garage sale-lol). I think it would be smart to bring this new info. to Dr. Beals and also keep your appt. with Dr. J. You can always cancel your appt. in September if needed. I would advise not jumping on a lot of products without the assistance of an llmd or doctor. You will probably need to take it slow at first until you lower your daughter's bacterial load, and then hopefully she will react less when adding in new things.

Edited by philamom
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