I'm am going to see a LL neurologist (either Dr. K or Dr. W in CT) for evaluation for IVIG treatment. I have fairly intense autonomic issues---orthostatic hypotension or POTS, among other things.
I also have neuropathy.
For those who have received IVIG treatment, or those who know someone who has, how helpful has it been? Has it been worth it?
I need to decide by tomorrow, Thursday whether to keep my appt with Dr. K. Thank you.
Posted by ping (Member # 6974) on :
Rumigirl,
The results from people I know are half good and half no difference or not so good.
I've never done IVIG, never wanted to do it.
Posted by seibertneurolyme (Member # 6416) on :
Rumigirl,
I went to one of the New York City neuroborelliosis support group meetings once in late 2007 -- about 1/2 the patients there were patients of Dr Y -- the other IV IgG guru. In talking to those patients -- about half had at least some improvement with IV IgG.
Not sure there is any way to predict who will improve with this treatment -- but in my opinion neither Dr K or Dr Y have sufficient knowledge of coinfections. That could be why some of the patients don't improve.
Dr W had some training with the Dr B -- in discussions with that office I get the impression that he will diagnose and treat clinically for both lyme and coinfections. If hubby needs a neuro again he is the doc I would take him to. I was not aware that he used IV IgG -- but that is not something we have really pursued for hubby -- just seems like the more lyme literate neuros focus on that. Dr W is also very expensive for new patient appointments, but he does supposedly take some insurance. Waiting list of 4 - 6 weeks for new patients.
Bea Seibert
Posted by lymebytes (Member # 11830) on :
I recommend doing a search here on IVIG. Chances are 50/50 it will help.
Posted by Rumigirl (Member # 15091) on :
Thank you.
up for more replies.
Posted by Rumigirl (Member # 15091) on :
up.
Posted by Tracy9 (Member # 7521) on :
I see Dr. W and he is my LLD. I've been his pt for a couple of years now. He treats everything and is very up to date on supplements too.
He is incredibly thorough, and sends you for a gazillion tests. He is very expensive, $950 for initial appt, but takes Medicare, United Health Care, and I believe Aetna but no BCBS plans. Expect a long wait in his office, he runs behind, sometimes hours. Just plan for it.
He is brilliant, and the office staff is extremely receptive. I am on IVIG right now through him. He is also a pain management doctor and a back specialist.
We just started an IVIG group on www.lymefriends.org and have some great discussions going there! Come join us.
Posted by METALLlC BLUE (Member # 6628) on :
Mixed reports based on what I've been hearing.
Posted by Rumigirl (Member # 15091) on :
Thank you, Tracy, MB, and everyone else. It's hard, because we have no way of knowing whether IVIG will help or make us worse, or no effect. But that's the same with all tx for us!