Really low-dose IVIG?

[MichaelTampa]

Still working on insurance approval, but my lyme doctor is recommending 20 grams of IVIG for the first time (in case of bad reaction), then 40 grams thereafter, every 2-3 weeks. He says he never goes over 40 grams. I weigh 130 pounds, which is 60 kilograms, so the initial dose is 1/3 of a gram per kg, then later doses would be 2/3 of a gram per kg. I am sure I have lyme, but also looks like I have PANDAS as well.

 

My memory is the lower doses IVIG have not worked as well as the higher doses, as far as people on this board. Does that sound right? Have the lower doses been bad, or just not as good? Anyone with lyme&PANDAS with IVIG experience to share? I have been treating with lyme protocol for 7 weeks, and getting some improvement, slow and steady mostly.

 

Michael

 

 

 

 

[just edited to say I weight 60 kilograms, not 60 grams]

Edited June 17, 2010 by MichaelTampa

[Fixit]

What a journey you've been on....Great News...and thanks for sharing....

i'll take slow and steady any day!!!!!!

[Suzan]

Michael, my 8 yr old dd started her first IVIG at .40 gm/kg, considered low dose. I was very concerned by this but our local neurologist held strong on the fact that this was his treatment plan. It's been rocky since (April 28th), but recently, I feel like she is really coping well. Not cured, but much better. She's on a reduced abx by 50% since her IVIG. Still has pandas episodes, probably needs another IVIG, but she is improved since before her first IVIG. Anyway, I hope this info somehow helps. We are still in the early stages of it all. Good luck to you!

 

Susan

[melanie]

Michael

 

danny does 60g(hes 135lbs 16 yrs old)every 21 days ,Not cured but doing much better.

 

Melanie