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prognosis for kids?

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Posted 7/21/2017 2:07 AM (GMT 0)
Hello.

My middle daughter continues to be so sick. She just started on rifampin and it is horrible. She is too exhausted to do anything and can not eat a thing. I am assuming this is a herx. She is only on 150mg once a day to start. Somehow the doctor thinks she will be able to tolerate 900 mg a day. I've heard that kids do great with treatment and rebound quickly. She is not at all. What does the future look like for these sick kids? Has anyone seen any long term data for either kids or adults or both that shows successful treatment that is permanent for both lyme/co-infections and chronic lyme?

We were not one of the lucky ones who developed the bulls eye rash so she wasn't diagnosed until four months after she had been bit. By the time she was diagnosed, it had already gotten into her CNS.

I am wanting to get my hands on some legit data about long term outcomes post treatment. Please share if you have. Thanks!!
Posted 7/21/2017 2:20 AM (GMT 0)
Wow 900 mg per day? How old is she? (if you don't mind sharing)

Most of us adults are on 600 per day...and I think if that doesn't work - then it's raised to 1200.


I hope he has her on the lower dose of 600 daily for awhile before bumping?

How long has she been treating?

I also hear children generally do well...but it is still not a quick fix...and we do have some members here who have children that are struggling...

Sorry - I don't have any data to post for you.
Posted 7/21/2017 2:38 AM (GMT 0)
She just turned 11.

She has been on ceftin, doxy, and aline for 6 months. Then azithromycin and alinia. She completely tanked with that combo and then tested positive for barton ella and erlichia. Originally, she tested positive just for lyme and babesia.

So now she is on monocycle, alinia and 150 mg rifampin for now. Once she is tolerating it better, I will add a second 150mg tab in the evening. And then move up from there.
Posted 7/21/2017 2:53 AM (GMT 0)
I'm so sorry for her. The poor thing. I so hate to hear of kids with lyme. Very unfair.

I hope she heals soon and my sympathies to a caring parent that is scared. Tough one, for sure.
Posted 7/21/2017 3:03 AM (GMT 0)

Evanston1 said...
She just turned 11.

She has been on ceftin, doxy, and aline for 6 months. Then azithromycin and alinia. She completely tanked with that combo and then tested positive for barton ella and erlichia. Originally, she tested positive just for lyme and babesia.

So now she is on monocycle, alinia and 150 mg rifampin for now. Once she is tolerating it better, I will add a second 150mg tab in the evening. And then move up from there.

11 seems young for that amount - unless she is the size of an average adult... (I'm referring to 900 mg of Rifampin)
I was on 600 mg daily...

What dose is her minocycline? 100 mg twice daily?
Posted 7/21/2017 3:38 PM (GMT 0)

Evanston1 said...
Hello.

My middle daughter continues to be so sick. She just started on rifampin and it is horrible. She is too exhausted to do anything and can not eat a thing. I am assuming this is a herx. She is only on 150mg once a day to start. Somehow the doctor thinks she will be able to tolerate 900 mg a day. I've heard that kids do great with treatment and rebound quickly. She is not at all. What does the future look like for these sick kids? Has anyone seen any long term data for either kids or adults or both that shows successful treatment that is permanent for both lyme/co-infections and chronic lyme?

We were not one of the lucky ones who developed the bulls eye rash so she wasn't diagnosed until four months after she had been bit. By the time she was diagnosed, it had already gotten into her CNS.

I am wanting to get my hands on some legit data about long term outcomes post treatment. Please share if you have. Thanks!!

Your daughter see Dr. J in CT, correct?
Posted 7/21/2017 11:40 PM (GMT 0)
No, she sees KB in NY. A college of Dr. H in NY.
Posted 7/22/2017 5:58 AM (GMT 0)
900 also sounds like a lot. Please have her start doing charcoal, cholestryamine, burbur like crazy. You might want to go to dr Charles ray jones google kids website so much info there in pediatric lyme and treatment. I hope it's ok I post his name, the medical board has sued him four times already lol :/
Posted 7/22/2017 9:37 PM (GMT 0)
Well... my daughter is officially done with Rifampin. She was on 150mg once a day for three days, vomited each day, developed rash. Took her to pediatrician yesterday. Its a frightening reality when I am telling the doctor what blood work to order. Nonetheless, her liver enzymes were super high. So done with rifampin. No clue how she is going to get better. No idea.
Posted 7/22/2017 9:55 PM (GMT 0)

Evanston1 said...
Well... my daughter is officially done with Rifampin. She was on 150mg once a day for three days, vomited each day, developed rash. Took her to pediatrician yesterday. Its a frightening reality when I am telling the doctor what blood work to order. Nonetheless, her liver enzymes were super high. So done with rifampin. No clue how she is going to get better. No idea.

I'm sorry, Evanston. you've got a lot on your plate.


I started with 150 mg once a day...i'm thinking IF (not saying she should) she is to try again at a later date - that she do 150 every two or three days. She is only 11 and it might be just too much to start with. I'm thinking she is most likely weighing quite a bit less than me.

Did she take it with a meal?

Was it a bartonella rash - or do you suspect an allergy?

There are herbal options for her.

Sending you and your daughter hugs.
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