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My son is being treated for anaplasma, bartonella, lyme, and mycoplasma infections. For the past 5 months or so, he has been taking 250mg zithro once/day, 300mg rifampin once/day, 100mg minocycline twice/day, nizorol (prevent yeast infection). In addition, he takes lots of probiotics, various supplements, and pectasol to help chelate heavy metals. LLMD recently Rx'd bactrim as well (can't remember dose but 1/2 pill/day w/meals) which we just picked up from pharmacy and haven't started.

 

Anyway, thought I remember reading that Dr. J preferred 150mg of Rifampin twice/day vs. 300mg once/day for bartonella, and my son's LLMD was willing to switch to 150 bid vs. 300mg once/day. But, he said when he tried to call this in for him, the pharmacist told him the lowest dose of Rifampin is 300 mg. and we found that it comes in a capsule so it can't be cut in half. LLMD said we could try doing 300mg twice/day, which is the adult dose of Rifampin, but that it might be a lot for my son. My son is 11 and weighs about 98 lbs. So, pretty close to adult weight. I'm just really scared of how hard this is going to be on his body/liver and wondering if anyone else has had their children on that high of dose? We do get blood tests done monthly to monitor liver and have had no issues so far.

 

In general, my son is doing really well. But, he still has ocd issues that interfere w/his daily life. They are no where near what they were, but randomly come up throughout the day - like he has to pet the dog's ears a certain number of times, and he can't listen if both my husband and I tell him to do something at the same time - it has to be only one of us asking him, random stuff like that, that no one else would even notice if they were around him I don't think. But, I think he has more ocd thoughts than rituals these days. I mean, it's a huge improvement, but the ocd is still there. Physically, he also has terrible fatigue some days and when he is herxing, he has relentless insomnia and nighttime fears and in general, feels like crap. There has been so much other stuff going on - colds, loose teeth, etc. that his flare ups for things aren't as predictable as they were before, but the symptoms definitely come and go. He also gets traveling pains throughout his body, pain in his feet, "hot eyes", headaches once in awhile, and lots of upset stomach issues/lack of appetite. The stomach stuff I never know if it relates to all the meds though.

 

But, right now I am just really on the fence about doubling the Rifampin dose and hoping some of you may have experience with this with your children? Any thoughts are welcome and appreciated. I'm a little scared to rock the boat so to speak. Just thinking about his ocd, realizing that another one of his ocd things went away recently too and know we are making progress. It seems slow, but, maybe slow and steady is the way to go?

Thanks,

Laura

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My DS is 9, 73 lbs. He takes 150mg rifampin in a capsule 2x/day. We get it from Costco. I would call the pharmacy or call a different pharmacy. Perhaps the first pharmacist did a "guy look" quickly and didn't explore enough options. 150 mg capsules are available.

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My ds is 11 1/2 and 75lbs. He was on 450mg Rifampin once a day for quite a while (off as of last week). He took a 300mg cap and a 15mg cap - we got them from Walgreen's.

 

If my math is correct, that's 6mg per pound. So for a 98lb kid, that would be 588mg - not quite 600mg.

 

In any case, I think you should be able to get the 150mg capsules.

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My son is being treated for anaplasma, bartonella, lyme, and mycoplasma infections. For the past 5 months or so, he has been taking 250mg zithro once/day, 300mg rifampin once/day, 100mg minocycline twice/day, nizorol (prevent yeast infection). In addition, he takes lots of probiotics, various supplements, and pectasol to help chelate heavy metals. LLMD recently Rx'd bactrim as well (can't remember dose but 1/2 pill/day w/meals) which we just picked up from pharmacy and haven't started.

 

Anyway, thought I remember reading that Dr. J preferred 150mg of Rifampin twice/day vs. 300mg once/day for bartonella, and my son's LLMD was willing to switch to 150 bid vs. 300mg once/day. But, he said when he tried to call this in for him, the pharmacist told him the lowest dose of Rifampin is 300 mg. and we found that it comes in a capsule so it can't be cut in half. LLMD said we could try doing 300mg twice/day, which is the adult dose of Rifampin, but that it might be a lot for my son. My son is 11 and weighs about 98 lbs. So, pretty close to adult weight. I'm just really scared of how hard this is going to be on his body/liver and wondering if anyone else has had their children on that high of dose? We do get blood tests done monthly to monitor liver and have had no issues so far.

 

In general, my son is doing really well. But, he still has ocd issues that interfere w/his daily life. They are no where near what they were, but randomly come up throughout the day - like he has to pet the dog's ears a certain number of times, and he can't listen if both my husband and I tell him to do something at the same time - it has to be only one of us asking him, random stuff like that, that no one else would even notice if they were around him I don't think. But, I think he has more ocd thoughts than rituals these days. I mean, it's a huge improvement, but the ocd is still there. Physically, he also has terrible fatigue some days and when he is herxing, he has relentless insomnia and nighttime fears and in general, feels like crap. There has been so much other stuff going on - colds, loose teeth, etc. that his flare ups for things aren't as predictable as they were before, but the symptoms definitely come and go. He also gets traveling pains throughout his body, pain in his feet, "hot eyes", headaches once in awhile, and lots of upset stomach issues/lack of appetite. The stomach stuff I never know if it relates to all the meds though.

 

But, right now I am just really on the fence about doubling the Rifampin dose and hoping some of you may have experience with this with your children? Any thoughts are welcome and appreciated. I'm a little scared to rock the boat so to speak. Just thinking about his ocd, realizing that another one of his ocd things went away recently too and know we are making progress. It seems slow, but, maybe slow and steady is the way to go?

Thanks,

Laura

 

My son is 9 and 71 lbs. He takes 450mg 1X/day and tolerates well. Andrea

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