Questions, questions

[dut]

Hi - having just read a recent current thread on whether to IVIG with Lyme or not got me thinking....

 

(we are looking at myco as possible for our PANDAS kids)

 

could the turning back of pages that Dr K coined as a term and many parents describe after IVIG be a kind of herxing that these kids experience 'cos of an underlying infection such a Lyme or mcyos or viruses.. and if so what would that mechanism look like?

 

Only a thought...

[sf_mom]

Of course. I have even e-mailed with Dr. K about this issues last spring. Once I understood herxheimer response and that my son was always more responsive to hd antibiotics and combo'd antibiotics.... I understood he more likely had a chronic infection.

 

I also spoke with Dr. K about this issue in person in January 2010 during our last hdIVIG treatment. It was unclear to him then how much was chronic infection and how much was auto-immune. He even stated that he could NOT disregard those children's recoveries that took off after hd antibodies were prescribed. We agreed that 'maybe' too much emphases was placed on the auto-immune component. Since then I am throughly convinced my children's chronic infections causes the hyper immune response that most call PANDAS/Pitands and the 'flipping of the pages' was actual herxheimer response. Dr. K is much slower to make these judgement about the pool of patients he sees and that is understandable.

 

-Wendy

Edited March 1, 2011 by SF Mom

[dut]

cool.. so I wasn't being mad then...

 

I didn't want to start a turf war between lyme/chronic infectionss and PANDAS.. I know and fully understand (been there myself) how much you get to "own" the diagnosis, that you probably had to fight really hard to get... it's difficult when you've lived and breathed one diagnosis and have to consider that it and the treatment you've battled for may not be the right or only one......

 

I'm still not quite there with Lyme but am warming to mycoplasmas and, at the moment, chronic infections feels right for my kids.....

[JuliaFaith]

It has taken me a while to get there with the 'chronic infections' as well but with all I have read and experienced so far, it sure seems likely. Thanks for your input and thoughts.

 

Julia

[pixiesmommy]

I'm absolutely convinced that the turning of the pages is a herx. We are pos for Mycoplasma, Lyme and HHV6. I have no idea if Pixie was pos for Mycoplasma at time of IVIG because we have not been able to have any access to her records from Dr K even though we have requested them numerous times. I am starting to believe he does not keep records or does not copy them for us to protect himself legally somehow.

[Tamistwins]

cool.. so I wasn't being mad then...

 

I didn't want to start a turf war between lyme/chronic infectionss and PANDAS.. I know and fully understand (been there myself) how much you get to "own" the diagnosis, that you probably had to fight really hard to get... it's difficult when you've lived and breathed one diagnosis and have to consider that it and the treatment you've battled for may not be the right or only one......

 

I'm still not quite there with Lyme but am warming to mycoplasmas and, at the moment, chronic infections feels right for my kids.....

Hi There ,

My son was found to have strep, mycoplasma, EBV he could not rid his system of the mycoplasma although strep titers declined. He has been on so many different and strong antibiotics for the mycoplasma, his behavior hasnt gotten better even after IVIG. I just found out my daughter has a positive IGM result, my son appeared to be negative soooo what is causing it and how to help I wonder. But we are going the lyme route for treatment now and I pray that it is the missing link.

[Suzan]

Hi there!

 

dd9 had worsening pain (leg, feet, hands, back) after her IVIG's that I now believe was herxing. Her IVIG's would help her behavior for about 3 weeks and then it would return. It never helped her pain, only made it worse for a while.

 

Susna