philamom

Another post just reminded me of this. I'm pretty sure Dr. Schwartz is a level 3 (ART testing) practitioner. That's pretty good (IMO) - level 4 is the highest, most experienced.

I'm sorry- was not very clear in my post. I am not doing the urine test at this time. But I would like to start on some vitamins/minerals that would sort of help treat KPU (assuming it's an issues). I don't want to give Core until I do the urine test (hopefully next month). Dd's GI doc thought she needed to be on a multi with iron right away - that is why we are holding off on the KPU urine test for now. thx

I had to start my daughter on a multi with iron on Monday, so will have to hold off on the KPU urine test for now. What vitamin/minerals could I supplement with until I test for KPU. zinc? B-12, B-6? DD is 68lbs.

We seem to have an increase of symptoms when we start any new probiotic. It usually dies down within a week, but there have been a few I gave up on. VSL #3 made my daugher manic. I like Florastor & Culturelle (use them daily) but my favorite is Ther-biotic Detox Support by Klaire Labs.

I wish I had the answer to that one! I do know that my daughter had the GERD and GI issues prior to treatment, and that they went away completly while on lyme treatment. She's off abx right now. We recently attempted to put her back on zith and it made the GI/nausea symptoms much, much worse - stopped it after 3 days. That could be a symptom of DIL (or possibly a herx). She also continues to test positive for Bartonella. Her DNase was also elevated since Sept - finally back in the 200's.

Sounds like my DS - reacts very badly to strep, in high PANDAS range on Cunninghams, and positive for lyme. I REALLY wish I could get the new test, mostly for my own peace of mind, but also for my family doc who is no longer on board with our treatment plan. He thinks after 6 months on various antibiotics the lyme is long gone and what are we treating now? Last I heard the test is U.S. only right now, and I'm in Canada. Has your DD already been treated for lyme, or was she on the antibiotics for PANDAS? Yes, I hope one day (soon) it will be available to everyone and covered by insurance. A hefty price tag at $595. I'm going to submit to insurance - hopefully get some reimbursement. Dd was on lyme combo for 11 months. Lyme doctor stopped treatment due to elevated liver functions. Since then she's had other abnormal labs that have kept her off antibiotics. So I asked my local doctor to order it. Yes, mostly for my own peace of mind.

Well in my situation, it just confirmed that strep isn't Dd's only trigger (of course, it was already assumed). But Dd does react to strep and was in the PANDAS range on the Cunningham test. She would fall into the PANS catagory. It also proves her lyme is still active.

bumping for lyme mom

It's been a hectic day for me so I'll post more later. The test is the Spirochete/Borrelia culture from Advanced Labs. Just came out a few months ago.

Since my Dd has been off antibiotics since the end of June, I decided to run the new borrelia culture. It's positive. I will be receiving the hard copy (picture of it swimming in the blood) soon. Even though she was Igenex positive IgM, and more recently positive IgM & IgG, it's still a blow to the stomach. Just thought I would share. I guess this will help with insurance purposes, right?

Sounds good to me. Pharmacy doesn't have the kids version (bonine kids) in stock but will by tomorrow. thx

Sounds like a good appointment (except the cost). Good luck.

If you ever want something OTC for motion sickness (car, boat, etc) I would highly recommend Cyclizine. It is the active ingredient in "Marezine" http://www.drugstore.com/products/prod.asp?pid=16152&catid=183030&aid=338077&aparam=marezine_for_motion_sick&CAID=6be4bded-455a-444b-8cd8-8ebe6a33067b and "Bonine for Kids" http://www.amazon.com/Bonine-Motion-Sickness-Tablets-Berry/dp/B0013NE374/ref=pd_sim_hpc_3 "Marezine" is hard to find (Walgreens special ordered it for me, or you can order it online)in stores. I don't know how easy it is to find "Bonine for Kids" in the stores, although you can always order it. I've tried multiple other motion sickness meds including Dramamine, Meclizine (the active ingredient in the adult Bonine) which made me really sleepy but didn't stop me from non-stop vomiting and nausea on a boat ride. When I went on a boat trip (which left in the morning), they also recommended taking 1 dose of the motion sickness med the night before, then another dose in the morning. Note: I have no idea if Cyclizine (Marezine or Bonine for Kids) helps other types of nausea (from IVIG etc.), you might stick with zofran for that. Good to know - thanks.

Was told by immuno office not to use more than two doses of Zofran (one b4 the train trip up and one b4 train back). :-( I was planning on giving the Zofran the night before the day of the train ride just to relieve her nausea for 12 hours before the trip.

How did you make out with your testing?

It's omsusa.org

Gave it to dd today. Thanks everyone.

I want to thank you for mentioning the Zofran. You never know when something that has worked for you (or your child) can help someone else. That's what so great about sharing our ideas/experiences. I was at our local DO this morning (9am) for the prescription. Gave my daughter a dose at 11:30. Got her to the GI specialist appt. at 1:30 without kicking and screaming. It really helped...at least she now knows she has something to help with the trip...reducing some of her anxiety as well. The GI (actually nurse practitioner) recommended an endoscope & colonoposcy and my daugher totally flipped out. She was crying and shaking with those deer-in-the-headlights pupils. The nurse was shocked that a 10yr old would react with such fear. The more she tried to calm her the more Dd got upset. I told her I'm not considering at this time - just to calm her for the drive home. Geez - I'll have to figure this one out.

let me add some more labs: Fructosamine 300 H C Reactive Protein 1.08 H ANA + (homeogeneous & nucleolar) DNA DS Antibody- negative Lupus Anticoagulant not detected PTT-LA screen 49H DRVVT Screen 47H Hexagonal Phase Confirm- Positive

Forcing her in the car (probably kicking & screaming) to a Gastro doctor appt. today.

How many days did they say he could take it?

bumping

I've thinking about sending him an email to ask his opinion. Is there a thread or an article in which he discusses this? Hopefully, others will chime in. I just remember it being addressed here. Maybe fcefxer? I also thinks he talks about in the videos that were just posted...not positive though. I'll bump them up.

I think Dr. T is researching the role of cytokines & BBB permeability.

Thanks for sharing rjayne. I remember your previous post - how is your daughter doing?? You've been through so much - I'm so sorry! How many days can a child be given Zofran?