IVIG and Lyme

[Betty04]

My DS8 is being treated for the last year for Lyme, Bart and babesia. We have made no progress and a times are at a worse point. 3 years ago when diagnosed with PANDAS he had 2 days of HD IVIG 2kg/g. His response was very negative and continued to be so for months after. He is IgA and IgG deficient. Discussed the pros and cons with our LLMD today about trying IVIG again as he stated others have had a positive response. Would love to hear from those who have had a positive and sustained response. Thanks for any feedback!

[mommakath]

My DS8 is being treated for the last year for Lyme, Bart and babesia. We have made no progress and a times are at a worse point. 3 years ago when diagnosed with PANDAS he had 2 days of HD IVIG 2kg/g. His response was very negative and continued to be so for months after. He is IgA and IgG deficient. Discussed the pros and cons with our LLMD today about trying IVIG again as he stated others have had a positive response. Would love to hear from those who have had a positive and sustained response. Thanks for any feedback!

It has really helped us and after 1.5 years of ivig and 2.5 years of lyme, bart, myco treatments, along with lots of gut healing, DD14 is finally getting a healthy immune system that is showing signs of working as it should. But, it's not been any one thing.....it's been the combo. I think I've read that low IgA means certain types on ivig only? May be wrong on this but was wondering if that may have been part of the bad reaction. I will say that we changed brands and went from every other month to monthly. Monthly made a huge difference in their reactions. Plus, we tweaked pre and post meds until we got them comfortable. So, a win for us. And, I have two kids getting it.

[socalmom]

Hi Betty04,

 

I may be mistaken but when my son had IVIG I was told you cannot have an IgA deficiency. IgG subclass is fine but IgA was one even NIMH said was uneligible for IVIG.

 

maybe someone else will chime in here.

[tpotter]

Hi Betty04,

 

I may be mistaken but when my son had IVIG I was told you cannot have an IgA deficiency. IgG subclass is fine but IgA was one even NIMH said was uneligible for IVIG.

 

maybe someone else will chime in here.

 

Depends how low IgA is. And, yes, there are other brands that can accomodate for low IgA.

 

We had good results for both my boys getting IVIG, but we never had a particularly bad reaction. And, as also mentioned, we also have done a lot with supplements, supporting and treating the gut, immune system, yeast, detox, and homeopathy. It really is the packaged deal...not just any one thing.

[msimon3]

Aside from IVIG, what is your treatment protocol?

 

We are seeing big improvements in two months using a pulsed antibiotic regimen prescribed by our LLMD. Advocates of antibiotic pulsing say that sustained treatment doses of antibiotics can have an immunosuppressive effect, are stressful on the body, and can lead to bacterial resistance. Pulsing keeps the immune system engaged, is less stressful, and reduces risk of bacterial resistance.

 

Time will tell. We are not free from symptoms yet, but this protocol has been noticeably effective compared to past protocols.

 

Since IVIG is itself immunosuppressive, could it be the cause of the low IgA and IgG?

[rowingmom]

Aside from IVIG, what is your treatment protocol?

 

We are seeing big improvements in two months using a pulsed antibiotic regimen prescribed by our LLMD. Advocates of antibiotic pulsing say that sustained treatment doses of antibiotics can have an immunosuppressive effect, are stressful on the body, and can lead to bacterial resistance. Pulsing keeps the immune system engaged, is less stressful, and reduces risk of bacterial resistance.

 

Time will tell. We are not free from symptoms yet, but this protocol has been noticeably effective compared to past protocols.

 

Since IVIG is itself immunosuppressive, could it be the cause of the low IgA and IgG?

Not to derail this post but we are also seeing big improvements after 1.5 months on a pulsed antibiotic protocol.