IVIG Question

[justinekno]

Can you treat Pandas with IVIG if you have Lyme too? Or does the Lyme need to be cleared first?

[Suzan]

Can you treat Pandas with IVIG if you have Lyme too? Or does the Lyme need to be cleared first?

 

From others who also have lyme I have heard the lyme docs say to clear the lyme first.

 

s

[justinekno]

Thank you. That would make sense.

 

Can you treat Pandas with IVIG if you have Lyme too? Or does the Lyme need to be cleared first?

 

From others who also have lyme I have heard the lyme docs say to clear the lyme first.

 

s

[laurenjohnsonsmom]

Ditto! Lyme has to go first and it is so tricky to diagnose & treat. (so many bands). Even doing the elisa and/or western blot doesn't necessarily rule Lyme out (did I mention so many bands and it hides). I know more families/children who went through IVIG unsuccessfully only to find out later that their pandas child/children/whole family has Lyme!

 

All suspected PANDAS children should always be thoroughly tested for Lyme in my opinion (only my opinion)!

 

Lauren and I just sent our serum to Igenix (sp?) lab for a comprehensive Lyme panel (not cheap at I believe a $475 price tag each) but worth it if it gives us more clues/answers.

 

 

Can you treat Pandas with IVIG if you have Lyme too? Or does the Lyme need to be cleared first?

[justinekno]

We are waiting for our Igenex test results (should get them next week at our appt) so I was kind of jumping the gun a bit and seeing how IVIG plays out if you have Lyme. Just getting prepared for that visit next week!

 

Ditto! Lyme has to go first and it is so tricky to diagnose & treat. (so many bands). Even doing the elisa and/or western blot doesn't necessarily rule Lyme out (did I mention so many bands and it hides). I know more families/children who went through IVIG unsuccessfully only to find out later that their pandas child/children/whole family has Lyme!

 

All suspected PANDAS children should always be thoroughly tested for Lyme in my opinion (only my opinion)!

 

Lauren and I just sent our serum to Igenix (sp?) lab for a comprehensive Lyme panel (not cheap at I believe a $475 price tag each) but worth it if it gives us more clues/answers.

Edited July 7, 2010 by justinekno

[KeithandElizabeth]

Gosh, I really agree with LaurenJohnson'smom about every child doing the IGENEX lyme test!! Both of my children have PANDAS and lyme disease and the lyme disease really threw us for a loop because our son did not have any of the "typical" lyme symptoms.

 

I have to say that so far, the lyme treatment has been amazing and has really helped both of our children dramatically. Usually, lyme is treated with multiple antibiotics at the same time in order to treat the lyme in the blood as well as the organs/tissues. On top of multiple antibiotics, an anti-cyst drug is used since lyme literate doctors now know that lyme will go into hiding from the antibiotics. And the dosage of antibiotics is shocking compared to what we were doing for our PANDAS treatment.

 

I do wonder for our daughter, who never had IVIG, if she will even need it once the lyme treatment is over. Our son did have several high dose IVIG's and small dose IVIG's and he is now doing much better since we began the lyme treatment.

 

Elizabeth

Edited July 7, 2010 by KeithandElizabeth