Posted 5/11/2009 5:27 AM (GMT -7)
Veronica you are absolutely right about us knowing more than the doctors and you are so lucky (like me) who has a doc who will treat aggressively based on symptoms. I had two Western Blots - the first one negative, but I had 3 bands (sorry, can't remember and IMO it doesn't matter) - the second one showed 2 bands, the third, none. Anyway, she treated me with orals and I got another bite in October. Started feeling really horrible in January - since I have to pay $200 for each Western Blot (I have 80/20 plan), she decided to do a CD57. Normal values are 60-300 - mine was a 19. By the time I got the PICC line put in in February, CD 57 was a 16. I am on IV Rocephin (2g 1x a day). Coinfections came out negative but was not getting much improvement (a lot of herxing though) with Rocephin, so she added the doxy - 400 mg daily - 2 weeks ago. Then I really herxed and still am. Taking probiotics, and various other supplments to keep my immune system as healthy as possible.
Sorry for the ramble; having a really bad brain day, but just wanted you to know you're not alone and I believe you have Lyme and I wish you the very best.
PS - What meds is doc starting you with?