Thanks for your thoughtful post about my sister. To be honest, we were a little disappointed with "our" appointment with the new LLMD. I don't know anymore, maybe it's us, but I just didn't get the feeling he took my sister's devastating symptoms seriously. He basically said that after getting "superior lyme treatment for the past 5 years", we shouldn't be sitting there in his office! How do you interpret that statement?? That it's all in my sister's head?? I could have burst into tears (didn't), and if you could have seen the look on my sister's face - well, it would have broken your heart.
I don't know where to turn - he did request that she come back in for another appointment in 2 weeks (May 28th) - in the meantime, he took her off all antibiotics - wants her to stay on herbal/vitamins, keep seeing her accupuncturist, go to a completely gluten-free diet, and he'd reevaluate her in two weeks.
I almost feel like we've wasted another 2 weeks of her life - the weakness, pain, numbness in her lower stomach and legs is continuing - which is scaring the daylights out of her. She still drags her legs and the fatigue is horrible!
We handed him a 2 inch thick stack of paperwork - which was a culmination of all previous IGenex tests, blood work, CD-57 levels, MRI's, spinal tap reports, etc., and I tell you the God's truth, I didn't see him look at one piece of paper! Again, I was so discouraged, I kind of shut down. He made a very generic statement, which I won't try to quote because I can't remember the exact words he used, but something like "you know, because of lyme's devastation to all body systems, it can trigger many other diseases". What the heck was that suppossed to mean?
Anyway, sorry for my rant - I just don't know how to help her anymore. I know there are many, many lyme victims that are in the same situation - frustrated and getting no where fast. I'm actually going to send georgiagirl a private e-mail - I found a recent post from her where she shared that she believes she's had lyme for 20+ years - is currently off all antibiotics, but I think is still taking herbs, etc. And, best of all, she indicated she felt "stable"! I don't want to intrude, and really hope she doesn't resent me contacting her, but I was thinking she might be an excellent resource on additional things we can try that might help my sister. By the way, my sister's name is Chris, and she is an amazing human being! So kind, and selfless, always thinking of others first, an incredible, loving Mom to two wonderful boys, and married to her childhood sweetheart for the past 33 years (she's only 54 years old)! You've been so kind in asking about her progress, that I wanted you to know a little more about her.
Well, guess I'll sign off. I will pray that you find your answers - and keep you posted if we find the "magic bullet". Please take care and God bless!