Can anyone tell me who is a leading expert or researcher in VGKC-AB? Hopefully nearest to NC area. I get screened for cancer every six months with nothing found so far. But I have many of the symptoms related to this and getting worse all the time. I am also positive for Lyme and Bartonella and those researchers believe there is a connection. The Dr who discovered my increased titer 2 years ago, and was recommending treatment due to my symptoms, is out on long medical leave possibly permanently. I have had even more bizarre symptoms in last year and have been pretty much bed- ridden the year.I hate to admit to some of the scarier symptoms that have occurred more recently on a fleeting basis and am fearful of an increase and loss of self. I Need to prepare my husband. I have had several hospitalizations this year and without proper knowledge base, the connection will not be made in the future. Would love to get help before I get to the point I am of no longer able to speak for myself. I believe to someone researching and working on this I would be of value at this point even if to keep track of changes. Though I am hoping for better diagnosis and treatment. We are QUITE DESPERATE at this point and many of my other conditions do not get treatment under insurance because of controversy.My Dr wanted to start 3 months of immunotherapy before she left. I cannot do the steroids because of infection. But IVIG or Plasmaphoresis could be of some help not only to the symptoms of VGKC-AB but also the Lyme and Bartonella. PLEASE! names of doctors who understand this .
I would love to hear from others who have this and have no malignancy as of yet also. Carolitis

Welcome to NeuroTalk:

These really rare disorders make it very difficult to find help.

I looked around and there is not much on the net either.

But this paper has an email, for one of the authors in UK...
If you use that email, and contact them, you may find a referral here closer to you that way. It is worth a try.

http://jnnp.bmj.com/content/79/2/202.abstract