Lyme confirmed.

Well Yeah I didnt do a western blot yet. The Lyme Doctor did just diagnose me by my symptoms. U may think i'm jumping the gun. But he said I am text book. I also came in with a Lyme rash I developed while taking minocycline In April. Mino that the infectious disease doctor gave me in spite of a negative serrologic blood test. (which are never correct in chronic). The Lyme doctor whom i love said to me... " He knew you had lyme thats why he gave you that minocycline even though he said you dont". He said judge people by what they do not what they say. Hes cool. Ive had a swollen knee and index finger, facial paralysis, butterfly rash, loss of muscle mass, loss of memory which he witnessed although he told me that i am a very intelligent woman that i noticed things other people dont which helped him see all my symptoms, and the specific type of chest pain. The present rash helped though, and some other symptoms. So i knew it was lyme it just felt good to hear someone believe me and he said "This is Lyme Veronica, and I am going to treat you."

I have been tested for lupus and I know it is elusive also and lyme can do anything. my other symptoms do not comply w lupus. And lyme can produce lupus like syndrome. I have done extensive research. And the doctors were the first to give me the information that lyme and lupus are the only two that cause butterfly rash. It is just much more prevelant in lupus. I did think it was lupus in the begining because of this. But I have been led to lyme instead. I dont identify with the lupus forum either when I read it. The lyme just fits. My lyme doc has clinically diagnosed me w lyme. And presently i developed a lyme rash while on mino.

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.

Hugs,

Laura

PS - What meds is doc starting you with?

Veromia, (I spelled your name wrong the first time too. Sorry about that)

I didn't mean to imply that you didn't have Lyme at all. I hope you didn't take me wrong. That's why I said that maybe Lyme was mimicking Lupus. I just wanted you to have all the information possible so that you could rule Lupus out. I see that you already had that done though. Good luck with everything and I'm sorry again. I didn't mean to come off in a negative way.

Thank you everyone, I do take it all as supportive information, after i get over my intitial sensitivity that has become a part of my brain. I wasnt so sensitive a few years ago. But i just love talking here. i love helping someone with something I have learned and so excited to see if someone responded to me. And you can call me veronica my daughters name is Era Mia . I mostly call her Mia. Veromia = Veronica+Mia! My western blot is in process. I am really interested in this Flow cytometry test though. I have taken mino which caused me to develope a lyme rash present when i went to my doc. i will begin 3 months on doxy after my western blot.

Thank you so much!