I have been doing IVIG every three weeks. Monday I did the 8th one.
I'm beginning to think the infusions are provoking TBD symptoms. Symptoms last a week or more.
The picture has cleated up since I have been off of IV doxy for a month. I am now doing only rocephin 4 days on and 3 days off.
Appreciate any input or comments you may have.
Thought for the day....... “Ideas come from everything” Alfred Hitchcock
Posted by Sammi (Member # 110) on :
lightfoot, I believe IVIG could cause a herx-type reaction. If your immune system is being aided by the IVIG, it may be better able to detect Lyme and company and stir things up.
What do you mean by "The picture has cleated up since I have been off of IV doxy for a month?"
Posted by lightfoot (Member # 2536) on :
Hi Sammi!
I wasn't sure if the herxing that I had been experiencing after the IVIG was the IV doxy.
Now that I'm off of the doxy, it seems pretty clear that it is the IVIG. I don't really herx from rocephin.
Question is.....is this beneficial?
Thought for the day....... “Education is a social process . . . education is growth . . . education is not a preparation for life; education is life itself.” John Dewey (1859-1952)
Posted by Tincup (Member # 5829) on :
Hey lightfoot! Good to see you! Sorry you are experiencing this craziness!
I followed one patient's progress- volunteer advocate too- and she may be willing to give you some help?
I can't share her email online without her permission, so if you feel it would help you can email me at the address below and I'll forward your info to her.
Always good to be here!
Posted by dbpei (Member # 33574) on :
Hi lightfoot. Sorry you are experiencing this. When I was on IVIG, I would always feel worse for at least a week - sometimes two. It was very discouraging. But close to the time for next IVIG, I often felt better.
I only stayed on for 6 months because I didnt feel it was helping me much. But now I am off all ABX and just taking herbs and doing okay. So perhaps it did help me more than I know. Good luck to you.
Posted by Sammi (Member # 110) on :
lightfoot, are you on the IVIG for an immune deficiency?
I felt a lot worse after the IVIG infusions for some time after I first started getting it.
Is it beneficial? If you are getting it for an immune deficiency, I would think it is. I know it is hard to do something that makes you feel even worse.
Posted by Keebler (Member # 12673) on :
- While it may be hard to determine exactly the "why" one "what" is that your liver / kidneys are likely stressed & your body may require a different approach to liver support from what you are currently doing.
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