Immune Deficient, PANDAS and Lyme

[cynditk]

Hi everyone,

 

I want to know if anyone has had experience dealing with all 3 of these together. My son was dx PIDD when he was 12, dx with PANDAS at 16, and dx with Lyme at 16. His PIDD has progressed from subclass deficiency to more of an IgG deficiency/ borderline CVID. I have read recently that its important for people to have an intact immune system to be able to fight the infections-that the IVIG and abx assist the immune system, but if the immune system is not functioning well, its very difficult if not impossible to recover. Anyone else in this situation?

 

At this point my son is getting IVIG replacement for his PIDD, and abx to treat PANDAS. We have not yet treated Lyme.

Thanks for any feedback!

[sf_mom]

Yes all three of our children have immune deficiencies, PANS, Lyme et al. Only our 7 year DD gets monthly LD IVIG.

 

Typically with chronic Lyme deficiencies are common in the IgG 1 and 3 subclasses. All of our children have immune deficiencies in all subclasses inclusive of IgAs and IgMs. Our DD was the most immune deficient with IgAs at 21. She had immediate improvement with IVIG. However, after her 4th monthly IVIG she seemed to be regressing or her immune system finally started to activate by fighting infections and she appeared to be worse. We rotated her antibiotics to address the Lyme and Bartonella "more aggressively" and her recovery has taken off again.

 

For us, the antibiotic aspect of treatment was as critical as the IVIG.

 

Our children are not fully biologically related (two children were conceived via donor egg). All have similar immune deficiencies and all have gestational Lyme. We feel that the black mold exposure from our prior home was probably adding to the load on their immune system and probably why they had deficiencies well beyond just the 1 and 3 subclasses.

 

There are a couple of LLMDs versed at treating with LD IVIG. You might research Dr. Katz from CT. He is a neurologist who treats Lyme et al with LD IVIG and versed at psychiatric presentation.

 

Here is one blog post.

 

http://lymediseaseresource.com/wordpress/happiness-istotal-recovery-from-chronic-lyme-disease-ivig-part-one/

Edited June 19, 2014 by sf_mom

[cynditk]

Thank you! Who are you seeing to manage your care? And, how have you managed the PANDAS in concert with the Lyme? How do you keep it in remission while treating the Lyme?

[sf_mom]

Our kids have been treated for Lyme for the last 4 years. Treatment has pulled our twins that just turned 7 off the ASD spectrum and they no-longer have any OCD. Older DS no longer has any OCD either but more traditional symptoms of Lyme and is still being treated.

 

The OCD came and went and sometimes with HERX's/Antibiotic rotations. We are in the San Francisco Bay Area. Our children have several Dr.'s that are local and happy to outline them via private message (upper right hand corner of forum page). All of our Dr.'s treat children with PANS/PANDAS.

[rowingmom]

Our daughter's ASD diagnosis has also been withdrawn after 2 years of abx treatment for bartonella and now herbal treatment for bartonella/babesia-like-organisms (she tested negative for both B microti and B duncani).

 

The impact of infection on brain function is completely under-estimated by mainstream medicine.

 

Our doctor was an ILADS trained LLMD. She informed me of the association of bartonella infection with PANS reactions and assured me that DD's PANS symptoms would resolve with treatment for infections. They have.

Edited June 21, 2014 by rowingmom

[ktdommer]

My youngest is treating all 3. He is 19 now. Doc said no sense doing IVIG in the case of Lyme without antibiotics on board. abx lower bacterial load so IVIG can do its job better. My son has congenital Lyme so 15 years undiagnosed has caused havoc on his immune system. Doc believes all can get better. Our ILADS doc is treating PANS. Suspect three years of Lyme treatment wasn't successful due to poor immune system. We are with a new doc for 1 year now.