What is going on now?

[Teri]

Dd6 is PANDAS/Lyme/ Bartonella. We added in rifampin to her abx mix of Azithromycin & Cefnidir (+ Lamisil) about 3 weeks ago at the start of her Spring Break. After 4 doses we had to stop as she had stomach cramps and diarrhea pretty bad. She is tiny - 40 lbs but has a stomach of steel & has only had diarrhea 3-4 times ever. Her dosage was at 150 mg 2x per day. We were also suppose to add Nystatin to the mix also as per Dr. jones. Tried to add the Nystatin in yesterday and within an hour she was doubled over with stomach cramps.

He had us stop both - wait a week and start Rifampin 1x a day along with Florastor. We are on maybe day 9 of that protocol. All along Since starting the Rifampin back up - she has an occasional tummy ache - no diarrhea! However she is experiencing a new level of exhaustion ( typically she is the energizer bunny). We are also seeing behavioral regression, tics(movements & vocal) resurfacing, some OCD compulsions, moodiness, anxiety, and possibly depression. "I wish I was somebody else!"

 

It's so frustrating! We are not sure if she is herxing from the Rifampin or she has had a strep exposure at school. We are also working hard to control allergies so I am sure that's adding to the mix!! I am going to take her for bloodwork tomorrow but we don't see Dr. B until 4/25. This is also the first time we will see the PA & not Dr. B.? Feeling so frustrated, sad, and worried about my little one.

Edited April 14, 2013 by Teri

[SSS]

Hello-

A few thoughts: you are giving more probiotics than just florastar, right? What else are you giving/ doing for detox?

 

You could also try giving charcoal caps a few hours after the antibiotics (and away from everything else) to see if mopping up the die off relieves the symptoms- hence, it could be herx, too much toxins. Charcoal can be constipating, FYI-

In my dd's 504 we get notified if anyone in the class is out with strep-

just happened last week, one of her best little friends, and my dd had no reaction or uptick.

[Teri]

We were giving kids Primadopholous daily prior to starting Florastor. Dr. J's office said we didn't need to do both. .?

 

I don't know too much about detox - where to start & what is ok to give. Not even sure i can get her to take any more supplements along with all the meds. Where would you find the charcoal caps? Dd is Kindergarten and the school has been very supportive. Initially we asked for a 504 as we weren't sure what to expect in terms of how the illnesses would unfold. Dd is a perfectionist and hides her tics/issues as best she can. In minor flares we have kept her home. The teacher has a loaded class and Dd is a rule follower and is very low maintenance for the teacher. Only when we ask does she tell us that she has observed tics in Dd but assures us that no one else notices. . Dd is very aware and is self conscious. We asked the Nurse if we could be notified if strep is in the class. In hind sight we should have had that in writing - 504. I did email the teacher to ask if anyone In the class had strep last week. She said she wasn't sure but will check with the nurse. I haven't heard back yet.

[Hopeny]

Hi sorry you are going through this. You may want to call the nurse directly in case the teacher forgot. Our school sends notices with strep, I think it may be a NYSDOH rule but I am not sure what other states do.

My DD did Herx on Rifampin and it did last a while. We plowed through it because it was manageable. Your DD's dose does seem a bit high, maybe you could speak with Dr J and ask him about 75mg 2x/day and build up to the higher dose, you may just be having too much die off. Burbur from Nutramedix seemed to work well for my DD9 in terms of Bart herx, using 5 drops in water about 2 hours away from abx. Our integrative also suggested charcoal but at that point my DD would not take capsules so I never tried it. Someone else (maybe Tu4four?) recently posted a good result with it. If the Herx gets too bad though I personally would back off, although I do think giving a lower dose a chance is worth a try. For your DD's weight the lower dose may even be better permanently if it helps.

Our first visit with Dr B's office was with the PA and she brought him in to see DD because of the extremity of our case. If you have concerns you could ask PA when you are there if he can come in. Especially with the new treatment it would seem a reasonable request.

Hugs to you.