lyme and ivig

[pamsboy]

Got back PCR positive for Lyme for my son. Waiting on Western Blot. He has been getting ivig 800mg/kg with exacerbations for about 3 weeks afterward of pandas symptoms. To be fair, we also do solumedrol (iv prednisone) at time of ivig, and for a few days after do 1mg/kg of prednisolone.

 

What is the thinking behind IVIG and lyme not mixing well? Or do they? Is it a potential treatment? And what is the thinking behind steroids and Lyme not being a good mix?

 

thanks,

Pam

 

p.s. my son also has PANDAS (we are seeing Dr B in a few weeks) Cam was 183, however he is only ever slightly high on aso. I supposed this could be PITANDS due to LYME?

Edited October 1, 2010 by pamsboy

[Priscilla]

I am not sure about IVIG but I know steroids have immunosuppressive effects (supress the immume system) in addition to the anti-inflammatory effects they are often prescribed for. I can't imagine that having your immune system supressed is good during ANY infection. That is part of the reason I skipped the steroids all together. I am not sure, there may be some other reason why it is contraindicated with lymes as well.

[cobbiemommy]

IMHO, your child probably has PITANDS, same basic idea, just different cause. After we did HD IVIg and my son had a properly functioning immune system, all h*** broke loose. I think those little spirochetes had been multiplying like crazy. Then when he had enough immunoglobulin to go after them the symptoms of lyme exploded!

 

Proper treatment of the Lyme should hopefully help with the PANDAS symptoms. Our LLMD does not recommend IVIG as a Lyme treatment. IVIg could be used (possibly) as a treatment after the infection has cleared to mop up any remaining symptoms of PITANDS. That comes from the PANDAS doc.

 

Steroids are definitely NOT recommended for anyone with Lyme.

 

Cobbie

[pamsboy]

Thanks....but how do you know if the lyme is active and needs to be treated or he's just been exposed in the past? And are the symptoms of Lyme the same? Echolalia, complex,vocal and choreiform tics, OCD?

[cobbiemommy]

This is just our experience-but yes-those were all related to the Lyme bacteria and the Bartonella. We had been diagnosed as inconclusive for Lyme about a year ago, but I think if we had treated for it then, we would be miles ahead today. Get to a LLMD ASAP! They will tell you what you need to do and know. Also, since they use high dose antibiotics, same as some PANDAS treatment, you should start to see relief either way.

[pamsboy]

Thanks, we are seeing Dr Jones on Monday! And we are already on Zithromax but I wouldnt call it high dose. He does have yeast issues so that's a problem - leaky gut and antibiotics are not a great combo...

[Suzan]

Hi, if I'm understanding correctly, lyme can also cause high CamK result.

 

My dd9 has pandas and I'm pretty sure she's got lyme too. We see the LLMD in November. My dd gets low dose IVIG's and they only seem to last a month. She gets worsening leg pain after her IVIG and then her pandas symptoms are a lot better for about 3 weeks. I will ask all these questions about lyme and IVIG when we get to the lyme doc too.

 

Susan