philamom

I didn't realize augmentin was good for clostridia. May i ask why your boys aren't on proph augmentin? thanks!

Susan- I wish i had more to say in terms of helping you but i just wanted to comment on the hoarding. My dd9 has a severe case of hoarding. Ugghh! Her recent IVIG's have helped with her intrusive thoughts (no more "my mind keeps telling me") and other aspects of OCd and (i'm definetely grateful for that) but we can't shake the hoarding. I took her to the beach last week and on a ride (flying Alladin ride) she lost part of her necklace. It was just the round silver metal piece that attaches the pendant to the chain. You can get them anywhere. She screamed and cried like a 2yr old and kept going on the ride in hopes to find it. Of course, we didn't. Then she wanted to drive 2+ hours home. She has 100 silly bands because she can't trade them. She keeps everything! The problem is i can't keep anything in her bedroom because of a dust mite allergy. Same for you?

Pandas Chicago- Thank you for posting!!!! Great News--big Yay!

Hi Erica- I read your other post before seeing this one. Welcome, you will find great information here and a lot of outstanding advice from wonderful parents! Thanks again for posting your history with c-diff. Melinda

Erica- Again, thanks for sharing...it means a lot! Can you tell me what probiotics (and how much) you are taking? Should you put sample in frige or freezer? How long since your last infection? Have you been on abx's for other reasons since c-diff? I hope I'm not too personal!

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What abx did he prescribe?

Stephanie 2- what regular abx are you using for the new strep infection? Melinda

Erica- Thank you for sharing this with us. Can you give more info. on how you got c-diff and why its become recurrent? How are you now? Did you do lab testing through a dan doctor or a lab like Quest? My dd9 had 3 c-diff infections. First one in 06 was treated with flagyl, second one in 07 was treated with Vancomycin, and third one in May treated again with flagyl. Melinda

My daughter has an appt. with Dr. J in 10 days. Her Immuniologist prescribed zith 250 daily for her lyme diagnosis for nine weeks. Next week will be the 9th week. Do you think I should take her off the antibiotics now so Dr. J can run any labs needed at the appt?

I would suggest calling Igenex directly to get an answer. Someone once mentioned you need to be off abx for the PCR testing...I'm not sure. We ran the Basic Panel which does not include the PCR.

thank you nancy. you say your pediatrician will order this? he agreed to it already, or you don't know yet? did he say he agrees with you using this company for testing for lyme? does he think your child could have lyme disease? philamom, you say your insurance is covering 70%? that is probably 'out of network', correct? for others doing this, don't forget there is a deductable to be met first with out of netowrk, and its usually 500 dollars or more. Yes, that is "out of network". My daughter met her deductable along time ago with all the "PANDAS" medical expenses.

I think it was mentioned you only need to be off abxs for the PCR testing. Everything else should be fine.

I think that should be fine...you could always call Igenex to be on the safe side. It takes 2-3 weeks and is mailed to the ordering doc.

If you don't see much improvement after 2 IVIG's, you might consider running the Igenex lyme Western Blot and Mycoplasma to rule out other infections. Just be sure to have it done at least 4 weeks post ivig.

I'm actually the first to admit that I'm his biggest "enabler" - especially at breakfast time which has been usually his worst. We had it down to a "dance" - and I'm an excellent dancer!!! There were many days where he was so happy and in such a good mood that I'd be tempted to break his "ritual" - but I'd always chicken out at the last second. I mean, it was such a good morning so far, why risk messing it up? We're now 3 weeks into strongly "attacking" our morning ritual, and while it's been rough, he's responding very well to the therapy and mommy hasn't lost her sanity yet either! Kudos to you! It's extremely difficult to tackle...I imagine even harder with a younger child. keep up the strength!!!

It gave me a sad feeling when you mentioned the dr and therapist saying it's partially your fault. I mean, I know the rituals have to be worked on, but with his age...it must be hard NOT to give in! Do your best...you are dealing with a !@*! alot!!!

I am not receiving any information when I open the links. Do you have a name of the type of tick remover? Thanks lyme mom!

bump

If a product say's "all natural" does that mean it contains no dyes? I'm amazed of all the products that have Red 40. Yesterday, I looked at my daughter's Jello (green & orange) and it has Red 40 in it.

My insurance did pick up 70% of the tab. We ran the Basic Western Blot at 250, but in hindsight, I also wish we did the more comprehensive testing like you are doing. Don't forget, I believe you need to wait at least 4 weeks post ivig.

LOL--It would be a pleasure if Lauren's mom considered me a close personal friend, but truth be said, my daughter just had an infusion at the same time as her daughter. Lauren was kind enough to help my daughter get through a very tough experience by giving her special attention and playing games with her all day long (Thanks Lauren...she still mentions you!!!). I remember when LaurenJohnsonsMom posted her daughter was getting high dose IVIG every 4 weeks...and posted again the next day that she meant 8 weeks. Anyhow, I find this topic very interesting, as I am battling with the decision to do another ivig in 2 weeks for my daughter, who is diagnosed with lyme. Her immunologist feels it would help her fight off other infections she'll encounter at school. It's still up in the air!

I'm pretty certain Lauren is receiving high dose ivig every 8 weeks, not monthly.

I'm pretty certain Lauren is receiving high dose ivig every 8 weeks, not monthly.

Didn't someone mention there's a certain device you can purchase for removing ticks...easier than tweezers. Where can it be purchased? Thanks!