Teri

Hi - Dd 6 is on a combo of Azithromycin, Cefnidir, & Rifampin. We are treating PANDAS, LYME, & Bartonella. We added Rifampin in March originally Dr.J wanted her on 150 mg 2x per day. She could not tolerate that much and had diarrhea ( this kid has an iron stomach & has only diarrhea twice before). We switched to Florastor probiotic and dropped down to 1 dose of 150mg per day which is where we have been for the past 2 months. Dd is 40 lb. she also takes generic Lamisil & Dr. J added in Nystatin to fight yeast. We are still trying to added Nystatin in but she has had lots of stomach aches. Our Rifampin was added in specifically to address Bartonella. Good luck! Teri

Have you tried Ibuprofen ? That is the advice we are given by our PANDAS doc. Dose it several times per day.

Does your son have a PANDAS/PANS dx? When my DD6 was initially diagnosed the Ped. Put her on 10 days of Azithromyacin on 10 days off for 30 days. As soon as she was off the abx the symptoms returned! Do you see a PANDAS doc? If you suspect that is what it is , I highly recommend you take your son to a PANDAS specialist as most Pediatricians are not adequately trained to treat it! Just speaking from my own experience .... And we have a great Pediatrician who dx my daughter within weekes of her tic starting. She was very supportive but conservative with long term antibiotic treatment. Hang in there ! Teri

Just read your post this morning and wondering how your little one is feeling today? Any improvement? Sending good thoughts and hoping she is feeling better soon!

Not sure what is going on with Dd6???? We have watched her experience some bumps in the road but since about the beginning of April we have seen her really struggle! She has a dx of PANDAS/LYME/ Bart. Is currently on a combo of Azithromycin, Cefnidir, Rifampin, Lamisil, & also takes Florastor. She has loads of allergies & asthma. Beginning in April we saw a flare in symptoms - hyper, she wet the bed, some return of OCD compulsions, & a tic. We returned to using Motrin to address inflammation and have been treating allergies with alternate use of Claritan, Benadryl, & Veramyst. Her asthma has been very bad the past 10 days. We typically only treat as needed but have had to give her nebulizer treatments daily - sometimes multiple times per day. We use Xopenex & Pulmicourt. Over about the past four days we have seen a big increase in tics and they are new ones too. She is shaking her head and hitting herself. I am not sure if she is hitting herself bc she is frustrated or it is a tic or compulsion. It seems to be a tic. This is so frustrating .... And sad for her. We have seen other symptoms as well. She had labs run on 4/15 and the only thing elevated was mycoplasma - Igg. We are awaiting the results of our labs drawn to see if we are triggering her immune system. We don't see Dr.B until 6/12 and pray that we don't see a big downwards spiral!! Help - any suggestions? Teri

My dd6 is a peanut -42lbs maybe but has been on 200mg -1tsp daily for about 1.5 years. She has also had additional Abxs added to that - but the Azithromycin has been the anchor. Your dosage sounds typical - if its helping.

Isn't there a blood test for yeast - candida?.

I would also recommend following up. Almost a year ago I pulled a tick off my then 5 yr old DD. The tick was attached but not engorged and i was able to get it off her probably within 12 hours. She has PANDAS and was currently on Azithromycin. We are in NJ so Lyme is also common here. I took her into the Pediatrician for something else but informed her. She wasn't that concerned. By June (prob. 4 weeks after bite) we began to see lots of new OCD behaviors. In Aug. she tested positive for Lyme & Bart. She has been on combo abx since August and is now on 3 different abx. Its been a tough road. We also heard that they had to be attached 24+ hours and/ or engorged to infect. That was not true for us.

Our then 5 yr old Dd last summer was obsessed with playing that she was someone else. We all had to participate in the scenarios - characters from The Magic Tree House and after the Olympics we had to pretend that we were "Kerry & Misty" the beach volleyball girls. We think it was an OCD thing because she would insist on playing and we all had to completely immerse ourselves in it. She would get stuck in it. Not sure if its the same for your son but it sounds like it.

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

Still trying to figure out to detox my Dd6 ... Where do you purchase the charcoal? What form are they in?

Tried to add Nystatin for Dd6 as per Dr.Jones. She is already on Azithromycin/ Cefnidir / Lamisil and we added back in 1 150mg dose of Rifampin about 2 weeks ago. (She couldn't tolerate 2 doses per day so Dr. J had us back off to one). She is taking Florastor. When I added Nystatin within an hour she was doubled over with stomach cramps. She has been having period stomach aches since we started Rifampin but the Nystatin seemed to make it so much worse. I have read that stomach pain is a symptom of Bart. And Dd had never really shown any outward symptoms of Bart,? Wondering if her little body is having trouble with the medicine, is this a common reaction to Nystatin, or is this herxing? So hard to figure out this puzzle! 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.

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.

Hi - my Dd was around the same age 3.7 when she took 10 days of Bactrim for a spider bite (we think) that got quickly infected. It did not bother her stomach but on day 9 she developed a strange allergic reaction to it. She got very bright blotches on the sides of her face and neck area . It took a week of Benadryl to calm the response. However I should note that my DD has many allergies!

Hi folks, We have just added in Rifampin to Dd 6 medication list. She is PANDAS/Lyme/Bartonella and is also on Azithromycin, Omnicef, & Lamisil. I am starting off slowly as we are also suppose to add in Nystatin 2x per day. My concern is that Dd take .25 of a chewable Melatonin each night. If not, she has a very difficult time falling asleep. We forgot to put that on Dr. Jones' packet - and hope that it is ok to take. She also takes a chewable probiotic daily. I would think it is ok to take but I am having a mini panic about it now that we are heading towards evening. I always forget about the Melatonin bc it has been essential to Dd getting a normal night's sleep. Any words of wisdom is much appreciated. Thx, Teri

Well picked up the Rifampin & Nystatin on Friday morning. Friday afternoon I had to pick up Dd from school as she had vomited twice in school. Btw I think this is only the 2nd time that she has ever thrown up and she is 6.5. She has some kind of stomach bug which has been going around. Luckily her stomach is feeling better, she is eating a bit, and she is sleeping a lot. I think I will wait until Monday to start the new meds. Dd will not be thrilled with the amount & frequency of medications she will soon have to take. Dr.B has us doing monthly labs to monitor liver function but I am concerned about liver care & detox. We have never had lidocaine but by now Dd is getting use to bloodwork. Dr.J has prescribed 150mg 2x per day for the Rifampin. Dd is petite - just hit 40lbs this month. ? i hope its not too much! Wondering if I should start off slow?? I read up on Milk Thistle and not sure dd can take it as she has many allergies including grasses, pollen, and weeds.? Still trying to figure this all out,

Thx for the replies landamom and Deedee! Picking up the Nystatin & Rifampin this afternoon. Hoping to start Dd on them tomorrow . She starts her Spring Break after tomorrow so I will be able to really observe any changes. Wondering if we see herxing and not sure what to expect from that. As far as detox goes I must admit I don't know too much about it or where to begin. I am still giving her daily Ibuprofen which we have been doing since before her last flair which was nearly a month ago. It is obvious that she needs a second dose by 5 pm - but I would like to get away from that as it cannot be good for her. Any other suggestions for an anti-inflammatory ? She is on her way to healing - but it's been a long and bumpy journey ! Thx for the support!

Good morning folks, Just took Dd6 for our long awaited Dr.J appt. last Friday. IGenex labs from August indicate she is positive for Lyme & Bartonella. Dr. B has had her on a Azithromycin / Cipro combination since August. Earlier this month he switched her Cipro to Omnicef. She is also taking Lamisil daily. Dr.J has added Rifampin & Nystatin. Does this sound right? Aren't Nystatin & Lamisil both treating yeast? She also takes a chewable probiotic daily. Any recommendations or feedback would be greatly appreciated! We haven't added in the Rifampin or Nystatin yet so not sure what to expect as we treat the Bartonella. Thanks ! Teri

Thanks for your reply! Will heed your advice about speaking clearly / loudly. Dd6 IGenex labs showed Lyme & Bart. In August. She was bitten by a deer tick in May 2012 and was already under treatment for PANDAS& on daily abx. It is clearly a factor in her healing so as per Dr.B's advice, we are going to address it. Hope it gets us on the right track. After a year plus on the PANDAS journey we are stumbling.

Thanks - appreciate your reply!

Good morning folks We are heading to our long awaited appt. with Dr. J tomorrow morning. I am feeling anxious about many things ..... We are coming from central NJ and have a 10 am appt. our plan is to leave here by 5 am so we miss rush hour traffic. It seems like it will be a 2.5 + hour ride barring any traffic. For any of you who have been .... Isntherenparking available? We are also wondering whatbtomexpect in the appt. I expect that they will run labs on DD6 (PANDAS/Lyme/Bartonella). Unfortunately she is used to bloodwork now so I don't think it will be that traumatic. Will she get a full exam ? Hoping it all goes smoothly for us! Any words of wisdom from you folks that have been there would be greatly appreciated. Thanks, Teri

Hello folks Dd6 has the long awaited appt. with Dr.J in two weeks. Just wondering what we can expect at this first appt. She had labs done with IGenex in August and tested pos. for LYME & Bartonella. She has been on a combo of Azithromycin & Cipro daily since August. I was hoping for a one & done appt. with Dr.J. Is it naive to think that? We Dr.B every 6-8 weeks to manage PANDAS. Getting a little anxious for the appt now. Can anyone recommend some place to stay near Dr.J? Thx Teri