Information overload...

Helpful stuff to get you through this ridiculous post (after realizing that it's not normal to know all of these abbreviations):
ID = Infectious Disease specialists
HOA = Hematology/Oncology Associates
PCP = Primary Care Physician

On Tuesday morning, I had an appointment with my Internist (my PCP).  It was an extremely stressful appointment.  He has randomly decided that I should be at the Infectious Disease specialists at Upstate, not HOA (where I was on Monday).  The strange thing is that he's the one who referred me to my doctor at HOA, yet on Monday he didn't even want me go to back for the blood work or my follow up appointment next week.  We've decided to go to both appointments and not just cancel them, because if that happens to be the place that I need to be (seeing as I'm still undiagnosed), randomly leaving them after they've offered to help is a terrible way of going about things.  What's ridiculously frustrating is that we asked to get into the ID people 6 months ago and were "denied."  We also brought up Lyme to all of my doctors last fall, and ALL of them said it wasn't Lyme.  Within the last week, my GI, Hematologist, and Internist have all said that they think it's Lyme or another tick-borne illness.  However, none of them really seem to understand Chronic Lyme at all, and they wouldn't be the doctors who would make that diagnosis... which is where the ID people come in.

 The ID at Upstate wouldn't just look for Lyme Disease.  For all we know, it could be some infection I've never heard of, or some blood disorder I've never heard of (which is why we haven't ditched the hematologist quite yet)... and I guess I shouldn't forget about some virus that has yet to be discovered (the doctors like to remind me of that one, although I don't think I'd like being a guinea pig of a new virus).  We think it's Lyme Disease, but we're trying to be open to other ideas, too.  One of the best ways to see if it's Lyme is to see what happens after a few days of taking Antibiotics.  Normally, a person with Lyme Disease will get a Herxheimer reaction from the toxins being released into their blood stream while the Lyme bacteria is being killed off (in other words: you get worse before getting better).  I don't remember having a herx reaction, but I also haven't been on anything like IV antibiotics, shots, etc... and I've had good days and terrible days anyways, so who knows.

On a much more positive note... I was feeling better for the past couple of weeks. =)  Definitely not completely better, but better than I've been.  My temperature had only been going over 100 once or twice a week, and I wasn't in as much pain for awhile.  I've been feeling more tired/feverish the past couple of days though and my hands/joints/muscles have been hurting again.  We're pretty much waiting to see if I continue to have more good days, or if I start getting more sick again the longer that I'm off antibiotics (I've been on them pretty consistently for the past 6 months).  If I go back to how I was throughout the winter or if new symptoms pop up, we'd definitely be closing in on a diagnosis of some type of chronic infection... I think.

I was over at HOA today for blood tests (it was switched from Tuesday to today), and then I'll be back there next Thursday.  I wish every doctors office was like that place.  Besides the puzzles and coffee that I talked about in my last post, there's also checkers, free candy, a gift shop, and everyone is really nice.  It makes sense, because it's an entire cancer center (lab tests, treatment, doctors appointments and everything else are done in the same building)... it just makes other waiting rooms seem extra boring.  Other than that, we're waiting for a phone call from ID to see when I have to go there.

Whew.  That was intense... kind of like the past few days.