Teri Posted April 23, 2013 Report Share Posted April 23, 2013 Dd6 has PANDAS/Bartonella / Lyme. She has been under treatment for P for over a year. Lyme came into the picture and Cipro was added in August. She is on a combo of Azithromycin/ Omnicef/ Rifampin plus Lamisil & Florastor daily. We started Rifampin back in March - 150 mg 2xnper day. We only got one day of 2 doses before she was doubled over with stomach cramps & diarrhea. Dr. Had us stop for one week & restart @ 1 dose of 150 mg per day & added in Florastor. We are on day 19 of that protocol and she seems to be tolerating it fairly well. We tried to add in the Nystatin as per Dr. instructions but within an hour she had very bad stomach cramps. So I have not tried it again. My concern is that she has been complaining periodically that her stomach hurts. This is a common stress response for her but I don't think it is that? I am wondering if now that we are treating Bartonella that she is beginning to experience symptoms. She had labs done on Day 11 of beginning daily Rifampin. We had been seeing a return of symptoms - ticcing, restlessness, emotional lability, and exhausted by 4 pm. I was sure she had a strep exposure at school.! Strep titres & AntiDnase numbers have slowly been coming down. However her mycoplasma numbers are high again.?? My questions for you more experienced parents - 1. Could her stomach aches be from herxing? Is it a symptom of Lyme or Bart.? 2. I am wondering if the increase in her myco numbers is related to Lyme. We switched from Cipro to Omnicef in early March. I welcome any advice !! Really puzzled here .... Teri Link to comment Share on other sites More sharing options...
airial95 Posted April 23, 2013 Report Share Posted April 23, 2013 Can't answer your questions specifically, but I can share our experience with Rifampin. We went on it the first time last summer, then was off until September, and have been on it ever since (with one month break in January) It has been, by far, the harshest on my son's tummy, but the only one that has kept the strep away for us. We have found that he complains of stomach cramps with the rifampin if he takes it without food. If we give it too him close to a meal, he's fine. If he takes it before eating and doesn't eat quickly enough - he gets the really bad stomach cramps. May be worth a try. Link to comment Share on other sites More sharing options...
rowingmom Posted April 24, 2013 Report Share Posted April 24, 2013 Our LLMD thinks DD11's stomach pain and cyclical IBS symptoms were actually bartonella. We treated bartonella for 1 year with rifampin/biaxin, and then added in a few more things in for babesia/lyme. Her pain would lay her out flat for 10-15 minutes at a time, and then resolve for a couple of hours. Pain and IBS symptoms were not part of her original herx. It was more shin/foot/skull pain and emotional lability. Her stomach pain has not returned since we began treatment 2 years ago. Link to comment Share on other sites More sharing options...
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