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Confusion.....what to do...IVIG,lyme treatment


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Hello,

 

Our history in a nutshell:

 

autism age 2, PANDAS diagnosed March 2012, Dr. L prescribed IVIG which is approved and was to be for this week. He has syndehams chorea. Still does. We did the tonsillectomy May 30th which even though we gave IV antiobiotics, he is now in a full fledged flare. The chorea is extensive again as it was for the first pandas flare. The OCD, the need for repeating things he says, the motor sensory triggering, it is all back. Our vacation was so stressful this past week.

 

It took 3 months of various versions and courses of antibiotics that would work and fail before the first flare settled down....to about 75% back to his baseline. And now we are back to pretty much where we started.

 

Lyme bands 41 and 66, CD 57 24, no other coinfections through testing but Bartonella might be suspected.........saw LLMD who treats pandas, lyme, autism. She said that it was lucky we didn't do the IVIG yet as it may not have worked. We have been on Rifampin for weeks, Diflucan and Nystatin for about 2 weeks, and zithromax for months. I added back in augmentin finally this week as the flare was getting worse.

 

However, last night, my husband approached me to ask questions and I have my wheels turning now. Have I made the right decision postponing IVIG. We have something that may help very much with the PANDAS flare. I also know the risk of steroids and IVIG with Lyme......but on the other hand, my son only presents with PANDAS that does not respond well to antibiotics, a low CD 57 (which another mom told me that two doctors have told her that more than the 5 things I have seen listed here can lower a CD 57 So this also does not say for sure he has Lyme). He does not have fatigue, joint pain that I can tell. True, alot of his ocd stuff revolves around his feet..(bartonella suggested).

 

My point is I am wondering if we can survive PANDAS flares like this while we are treating the lyme for months/years. Maybe I should go ahead and do his approved IVIG.

It is the riskng the lyme herx, or the need for repeated IVIG's. The chorea as I said is atrocious again. The eye squinting bad, and who knows what else as he is only somewhat verbal.

 

My ponit is that he is not clearcut LYME but he is clear cut severe PANDAS. I have read probably 50 posts on this dilemma.....it has not really helped me figure it out because everone's experiences are all different. It is like rolling the dice unfortunately. Any thoughts woudl be appreciated.

 

I would love to hear from someone who had clear cut LYME and PANDAS and they went ahead with IVIG...what were your results.

Thanks. I am going to post this on Lyme ACN board too....I hope that is okay.

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ok here ismy opinion. Based on my Lyme and co and my son having PANDAS and just dx with Lyme.

 

bands 41 and 66 doesnt really mean Lyme definitely. Those two bands are not specific to Lyme. Other diseases and cause those two bands.

 

But with Lyme, when you add a new antibiotic (augmentin) it can cause a herx reaction, which flares everything up. I am \newish to the Lyme and PANDAS combo. My understanding is to treat lyme and co first then do IVIG. \\

 

I know people that do both at the same time that is my 2 cents

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Bulldog24,

I added the augmentin AFTER the tonsillectomy PANDAS flare.....so the adding of the augmentin does not seem to be causing any herx. It is just the tonsillecotmy that started our second pandas flare.

I did see die off when we added diflucan but only two days and it was very mild.

Thanks.

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