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Question For Lisa And Heidi

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Hello Ladies!


Would you mind if I sent you both some medical info that I found about long term problems from EBV (Epstein Barr virus, in case someone isn't familiar with that) to get your opinion? One article was written by some doctors here in NY, and I've wondered if at some point I may have had mono, but it was passed off as the flu. Not to mention that 17 rounds of the "flu" with high fevers since childhood seems unlikely for anyone, and and there are some very distinct problems that can arise years later from EBV, one of which is chorioretinitis. About every 2 years since 1982 it has been the same thing; a month with a distinct rash, two months later the inflamed eye for a month (the last round damaged my retina), then another two months goes by and the "flu" hits, and each round is worse than the last time. That's why one doctor said it sounds like Lupus, but EBV also came to mind. The bouts are hitting more frequently now, and the symptoms aren't so spread out over the months, and last year I finally realized they were all connected. Always something, eh? At least I can see again!


Take care, and hope this year brings you great things!



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My son at age 19 had the worst case of Mono doctors around her have ever seen. He has the same recurrent problems you are describing here. I would be interested as well in seeing the information you are passing to Lisa and Heidi, but more for my own knowledge, not to approve it for the board.

Warm and gentle hugs,



ISN Support Specialist

International Scleroderma Network (ISN)

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