Dr. B & IVIG for PANDAS/Lyme patients

[Iowadawn]

Hi all!

 

To those who have seen Dr. B, particularly my friends in PANDAS/Lyme. What kind of immune system problems has he found? Is he doing IVIG for these patients. Dose? Can/has he gotten approval for IVIG if you live out of state & then have you been able to get it done back in your state with a willing doc at your end? Scratching our heads here. Maybe these are redundant questions. Any other info? You can PM me if you want. Dawn

[kimballot]

Hi Dawn - I can only give you our experience:

 

1.

What kind of immune system problems has he found?

 

He found highly elevated C3D levels initially, indicating a large number of immune complexes - meaning DS was either fighting a really bad infection or he was having an autoimmune response. He also found mildly low IgG numbers overall, but found that DS was deficient in 11/14 s. pneumoniae specific IgG levels (which made sense since he had chronic sinusitis). About 4 months later he found mildly decreased IgA as well - and we had to keep an eye on this before starting IVIG as IVIG can be problemmatic with markedly decreased IgA.

 

2.

Dose?

1.5 Grams/ Kilo

 

3.

Can/has he gotten approval for IVIG if you live out of state & then have you been able to get it done back in your state with a willing doc at your end?

 

We do live out of state and that was not a problem with our insurance. I would love to move IVIG to our home town for every other visit (we go about every 6-8 weeks). I have a local doc (psychiatrist) who is willing to write the orders, but I've not yet contacted insurance to broach this. Dr. B would not write the orders for the out of town infusion, and it is my understanding that the insurance approval is physician-specific, though I am not completely certain. I would love to hear if others have experience with this.

[philamom]

Hi Dawn - I can only give you our experience:

 

1.

What kind of immune system problems has he found?

 

He found highly elevated C3D levels initially, indicating a large number of immune complexes - meaning DS was either fighting a really bad infection or he was having an autoimmune response. He also found mildly low IgG numbers overall, but found that DS was deficient in 11/14 s. pneumoniae specific IgG levels (which made sense since he had chronic sinusitis). About 4 months later he found mildly decreased IgA as well - and we had to keep an eye on this before starting IVIG as IVIG can be problemmatic with markedly decreased IgA.

 

2.

Dose?

1.5 Grams/ Kilo

 

3.

Can/has he gotten approval for IVIG if you live out of state & then have you been able to get it done back in your state with a willing doc at your end?

 

We do live out of state and that was not a problem with our insurance. I would love to move IVIG to our home town for every other visit (we go about every 6-8 weeks). I have a local doc (psychiatrist) who is willing to write the orders, but I've not yet contacted insurance to broach this. Dr. B would not write the orders for the out of town infusion, and it is my understanding that the insurance approval is physician-specific, though I am not completely certain. I would love to hear if others have experience with this.

#3 - That is my understanding.

[LNN]

I believe MommaKath found a DAN in her area who is willing to take over her son's IVIG treatments locally, based on Dr Bs previous treatments. But yes, it's the local doc writing the orders. You may want to PM her. I don't believe she logs in on a daily basis.

[Iowadawn]

Thank you all. We have the doc who has written the orders, but I think the insurance co. is going to give us a heck of a time for more after our year of approval, without "labs" to backup the request. We pushed REALLY hard last time and BCBS said any additional would need labs. Any ideas. Dawn

Edited January 12, 2012 by Iowadawn

[cobbiemommy]

Dawn,

You asked these questions before I could. We are seeing Dr. B on the second of next month and I was wondering the same things. One of DS's issues is viral (HHV6 and EBV), so hoping we can get some help there as well. So do I understand this right, that if your child is a candidate for IVIg, it must be done in Connecticut if Dr. B prescribes it?

 

At the moment, can't imagine flying halfway across the country every eight weeks, but where there's a will there's a way!

[philamom]

Dawn,

You asked these questions before I could. We are seeing Dr. B on the second of next month and I was wondering the same things. One of DS's issues is viral (HHV6 and EBV), so hoping we can get some help there as well. So do I understand this right, that if your child is a candidate for IVIg, it must be done in Connecticut if Dr. B prescribes it?

 

At the moment, can't imagine flying halfway across the country every eight weeks, but where there's a will there's a way!

If Dr. B gets the approval for IVIG, you will have to travel to him, whether it be for one IVIG or every 8 weeks.

Edited January 12, 2012 by philamom

[Bill]

Hi all!

 

To those who have seen Dr. B, particularly my friends in PANDAS/Lyme. What kind of immune system problems has he found? Is he doing IVIG for these patients. Dose? Can/has he gotten approval for IVIG if you live out of state & then have you been able to get it done back in your state with a willing doc at your end? Scratching our heads here. Maybe these are redundant questions. Any other info? You can PM me if you want. Dawn

 

 

My son has been diagnosed PANDAS and Lyme. We do not live in CT. He is (was) doing IVIG at 1.5g/KG total over two days. So for my son, that equated to 60 grams given thirty grams a day.

 

Dr. B. diagnosed variable immune deficiency. I think that this was based on very low strep pneumonia panel (14 serotype) results (10/14 were very low) and total IgG serums (low). Interestingly, we just got denied by insurance for a 4th IVIG and in the letter from the insurance, variable immune deficiency was on the approved list. I suspect that they want more tests run. Son is scheduled for total IgG serum blood test this weekend. Dr. B. relayed that you can't go by the pneumonia panel results once IVIG has been administered though. During our last visit, he was also referring to son's Cunningham test results which were high for the anti-Lysoganglioside anti-neuronal antibody titers. Caveat - I may have all of it backwards as when I just looked back through some of the old blood work, the total IgA and IgA subtypes values were low as well but I don't recall those being point out....

 

We have not tried having the procedure done locally. I did talk to a few doctors including two allergy immunologist who quickly referred me elsewhere. It seems that Dr. B. is one of the few who take the immunology part of their training seriously.

 

 

[norcalmom]

I have to wonder what the failure rate is on the that strep pneumoniae panel is they run. My son only made 1 titer in range, and of the others, he had 10 at absolute zero. They want you to revax in order to test if your immune system makes a response, which we did not do. There are other ways to get more infor according to more recent immunoligist, a sspecialized B cell testing (wihc our lab messed up blood sample on, and I didn't re-do because DS had horrible needle fear and getting him to do the first bloood draw was all I could take).

 

My son has very high mycoplasma pneumoniae titers for IgG, and wondering if any correlation to kids with hardly any response on the strep pneumoniae panel and chronic mycoplasma.(or Lyme). anyone else have these two things in their results?

[Tamistwins]

I have to wonder what the failure rate is on the that strep pneumoniae panel is they run. My son only made 1 titer in range, and of the others, he had 10 at absolute zero. They want you to revax in order to test if your immune system makes a response, which we did not do. There are other ways to get more infor according to more recent immunoligist, a sspecialized B cell testing (wihc our lab messed up blood sample on, and I didn't re-do because DS had horrible needle fear and getting him to do the first bloood draw was all I could take).

 

My son has very high mycoplasma pneumoniae titers for IgG, and wondering if any correlation to kids with hardly any response on the strep pneumoniae panel and chronic mycoplasma.(or Lyme). anyone else have these two things in their results?

 

All my children have low pneumococal titers and 2 out of 3 are pos for Lyme and the thurs has high mycoplasma titers. My mother just tested low pneumococal titers, she always has chronic sinusitis and more recently we discovered a mycoplasma issue with her as well. I'm wondering if she has Lyme too.