MNsue Posted May 12, 2006 Report Share Posted May 12, 2006 I met with an immunologist today for the first time to discuss my POTS and various other autoimmune issues. I am very excited because he has treated many patients with dysautonomia and autoimmune issues. I was diagnosed with Chronic Fatigue 16 years ago after mono. He noted that I had a positive Ebstein Barr test. He said that Ebstein Barr attacks the immune system and can cause many autoimmune diseases including dysautonomia. I have responded well to prednesone in the past, however without a sinus infection, I was left without any treatment. He thought that he may be able to control my flares of dysautonomia with a number of autoimmune based drugs. I had a number of immune system blood tests done today. We will meet again in 2 weeks to go over the results. I am so excited to have someone that will treat the autoimmune disease that is slowly taking over my body. I hope this will help others in the same boat. Rhonda Quote Link to comment Share on other sites More sharing options...
mom4cem Posted May 12, 2006 Report Share Posted May 12, 2006 I hope this is the start of something great for you. Good luck and I look forward to reading how it is going/working for you. Quote Link to comment Share on other sites More sharing options...
Poohbear Posted May 12, 2006 Report Share Posted May 12, 2006 I'm glad you had a positive experience!!By any chance did he discuss the possibility of IVIG therapy with you? Quote Link to comment Share on other sites More sharing options...
MNsue Posted May 12, 2006 Author Report Share Posted May 12, 2006 I'm glad you had a positive experience!!By any chance did he discuss the possibility of IVIG therapy with you?My next meeting with the Dr. will be to discuss treament options. They are waiting for more labs to come back. Have you tried IBIG therapy? If so did you have an antibody marker that made it an option. He did talk about short burst of IV steroids for a flare. I'm not so excited about that option, but it beats no treatment at all. Rhonda Quote Link to comment Share on other sites More sharing options...
ellen Posted May 14, 2006 Report Share Posted May 14, 2006 Congratulations Rhonda! I'm so glad you finally found a good doctor. I hope you have some good results with the treatment. -Ellen Quote Link to comment Share on other sites More sharing options...
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