philamom

mdmom- that's so wonderful to hear! I'm feeling a little guilty, as we were unable to attend...my daughter didn't have a good day yesterday (darn that tindamax). darlene- sending you a pm

"Seven Lyme Facts That Could Have Saved Me!!!" edit- ending is so sad!

Hi Wilma, I know your daughter is dealing with severe ocd so not sure this would work if she has contamination issues...but how about a pottery camp. My daughter is doing a couple of 9-12 weeks. Her class is for all ages and offers different themes each week.

We did the OAT too and I think there was an add on stool test but I can't find what it was called. I don't see where it checks for clostridia. susan Ok, thanks. I like the idea of checking for resistance.

Susan- Is this the MOAT test? I only ran the urine test (OAT) which didn't check if resistant to abxs. Did it also check for clostridia? thx

Well Mandy...that's a handful. How is your daughter? Still having the difficulty breathing episodes? I'm assuming she's being treated for the Mycoplasma now...correct? Did she receive a change in abx?

Dr. J is a wonderful, caring doctor. Nicest I ever met! He doesn't focus on any detox though. Last month we took my daughter for a follow up visit with him. On the way we hit a major traffic jam causing us to be late. We stopped for my daughter to go to the bathroom and her small stuffy fell out of the car. We realized 15 minutes later and had to return to get it. My daughter has a SEVERE fear of losing things. She was having panic attacks and very close to vomiting. It was not an option for us not to go get it. Fortunately, the toy was still there. This made us even later for the appt. We had the last appt. slot on a Saturday. Dr. J and some of his workers stayed late to see my daughter. One worker had to catch a later train. They were not upset at all. When I told Dr. J of the incident, he told me that I made the right decision in going back to retrieve it. Our appt. was still longer than the time I had paid for. No rushing at all. edit- it's just a donation jar. No one ever asks for a donation though...it's your choosing.

There are some that have used it on the Lyme forum. You might want to post there as well.

My dd is more agitated the next day when using it. That's why I prefer the liquid, so you can control the amount given. But even so, I only give it to her when I really have too. It's been less frequent since lyme treatment. For myself, I use the sublingual tablets, and found it to be very helpful.

If you are just running the Western Blot, he is fine on the antibiotics. It will not affect the test.

Nancy- thanking you for sharing this information. While I was searching the International OCD Foundation website, I found out there is an OCD support group (for all ages) ten minutes down the road from me. Great websites...thanks again!!

Dr. E from CHOP is the doctor I'm speaking of. I'm not saying I agree with her, just what she told me in 2009.

Melanie- How many days was he on each time? My daughter did have a herx reaction when she started it and again another time after stopping it for 10 days. The herx lasted couple weeks. I was unable to open the link you posted. Mommy instinct is usually right! Before PANDAS/Lyme diagnose, my daughter was constantly prescribed allergy meds (sing,zyrtec,clar,steroid nasal spray) which she reacted negatively too. When I told her doctors the meds changed her personality, they looked at me like I was crazy. They said it could make her drowsy/hyper, but not change her personality. Of course, this was six years ago. Moms know best!

This is what it states in "Understanding the Western Blot" by Dr. J: "IgM converts to IgG in about two months UNLESS there is a persisting infection driving a persisting IgM reaction."

Since your appt. with Dr. N is in five days, you may want to hold off on adding anything until you see him. Good Luck!

Yes, we saw her in May 2009, and at the time she told me she disagreed with the doctors who are prescribing azith for PANDAS. Maybe it's changed??

Sorry tpotter, I didn't mean to hijack your thread. I didn't realize a picc line was involved (although, it makes sense ). tpotter- it gives me goosebumps when I hear of his improvement--after all that he's been through!! Fingers crossed for ya!

Bill- my daughter started Minocin in December. She had an IVIG in March. She didn't have any issues with intracranial pressure, just the usual headache you get with the infusion. Lots of fluids help minimize the headache (along with benadryl).

Premiere hotel & suites has an outside pool. It's 10 minutes from his office. Each room has its own kitchen and there's a complimentary breakfast daily. We stayed there once. More recently, we just stay at the hotel (doubletree) we use when seeing Dr. B. It's another 30-45 minutes further from the doubletree to Dr J (from 95 NJ). Good luck with your appt.!

I was told this doctor retired (not 100% sure though).

I am so happy that you have found some more answers and are seeing improvement with IV antibiotics! How come iv abx is not recommended more often for children...other than the ordeal of the procedure? anyone?

She will not change her mind on the zith, and she has been in touch with some of the PANDAS doctors. She feels it contributes to abx resistance in general. My daughter once had remission of symptoms from duricef. Could be the the same family as Cefdinir though...not sure.

I agree with tampicc. You may also need to try a few different brands to see what works best for your daughter. If you don't see any change on a lower amount of the Custom P in a few days...try another. We like Florastor and Culturelle from the drugstore. They come in capsule or packets (kids version) and can be mixed in juice, applesauce or taken plain.

delete

Just 4?? lol Chocolate brazilian nuts are very tasty.