I have neuroborreliosis, and recently met with a neurologist from Cornell university who works with lyme patients. They have had the opportunity to try IVIG with a few Lyme patients there, and feels it might be beneficial for me to try. Anyone with any experience with IVIG or plasmaphoresis?
Thanks
Posts: 143 | From Louisville KY | Registered: May 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
At a cost of $15,000, it better be more than just 'maybe beneficial.' Are your IgG subclasses drastically reduced?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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IVIG can be very difficult to get covered by insurance. My son has had three high dose IVIG treatments. The first one cost us $15,000 - Seekhelp is right on the money there. Our insurance then changed and the next two were covered - Thank God!!
My child was diagnosed with PANDAS and had the first one in Dec. 2009. He slipped again the following Sept. and had two more in Oct. and Nov. 2010.
We saw improvement after the first one but he got worse after the second and third one. He has since been diagnosed with LD and we will not do another.
I know of a lot of children who have had IVIG. For some it works wonders. The kids that don't respond well or stay well - the majority of them are testing positive for LD. Most of the parents have stopped IVIG for these kids and are seeing better results with LD treatment.
One thing to keep in mind is the dosage. The ones my son received are high dose. Some doctors just give a smaller dose monthly to boost the immune system. This has not worked well with the children I know of but may with an adult. I don't know any adults receiving it.
My LLMD's assistant gets monthly IVIG but I do not know how she is doing with it. She also has neuro issues.
-------------------- If I was a magician .... I would make this all disappear!!! Posts: 8 | From Wisconsin | Registered: Feb 2011
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