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Please help. We are on our 2nd round with Pandas and now Lyme co-infections with my DS(23). Twelve years ago he responded beautifully to abx. This time he has not responded to abx or to one round of IVIG (no response at 8 weeks). He has treated yeast successfully, mycoplasma and H pylori successfully, no active strep or viruses, although ASOs still high 400s and Dnase B at 300. Babesia duncani at 40, and possibly some bartonella - although no symptoms for any lyme or co-infections. Physically he is the picture of health. His symptoms as an adult are invisible but still debilitating - extreme social anxiety and consistent depression. We are seriously interested in plasma exchange as a next step. It seems logical that cleaning his blood of antibodies and then re-training the immune system would alleviate his symptoms. We would love to hear some current experience with this. Who is doing plasma exchange? Our provider said she would do it if she could; apparently its almost impossible to get in California. If insurance will not pay - how much does it cost and can one get the contract rate? Does it matter that DS has primary diagnosis of autoimmune encephalitis? I would really like to hear some recent experiences with this? Most comments I see are from 6-8 years ago. Does this mean that no one is getting plasma? It is listed as a front line treatment for AE, which many or most of our kids seems to have as a diagnosis. We have to make a decision about next steps. DS is not getting any better. NO better on the path we are on. Is plasma exchange a good option - obviously knowing there are no guarantees. Thanks for any help.
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Receptionist just called. Being moved to another dr. NOT Dr. N.
Guest posted a topic in PANS / PANDAS (Lyme included)
We were supposed to leave Florida monday and see Dr. N tuesday but the receptionist just called and said we have to see a "Dr. Derek Chong". He has good ratings online and 3 very good reviews, but I don't know anything about him. Any advice would be welcome. My mom can't reschedule everything, she works full time as R.N. in busy hospital. WE have rented a loft as well. Can't say I'm not disappointed. He is board certified in neurology, psychiatry, and sleep medicine, which is GOOD. Can anyone give any advice in dealing with this situation? One time I was supposed to see a top M.E./CFS specialist in Miami and we ended up seeing her partner and it was a hellish experience. The "partner" doctor didn't have much knowledge, bad bedside manner, spent thousands of dollars and couldn't help me at all!!!!!!!!!! This happened to one of my best friends b/c we went down there at the same time, and this "partner's" treatment actually made my friend permanently worse so this is the concern we are having. Is it safe to see a partner? My experience when this happened was terrible. What I do like about this situation is: "1. He always returns calls/Emails promptly 2. he answers all my concerns/questions and never makes me feel "crazy" no matter how crazy they are 3. He fits me into his schedule if I need to be seen immediately 4 . He never makes me feel rushed in an appointment and will spend however much time is needed to answer all my questions 5. he asks a lot of questions and is very thorough in examining 6. http://www.vitals.com/doctors/Dr_Derek_Chong/reviews#ixzz2klDz5dn7" Also the day and time was rescheduled from afternoon which is better for me to VERY early in the morning (major sleep disorders). Thanks.