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So, a couple updates: Dr. C's office called and had an opening for THIS WEEK!! I'm trying to get the STACK of paperwork completed by then and get my symptoms and health info down in writing. But, I'm very "excited" to do this; get the ball rolling and hopefully find some answers.
Hubby and I will go up (2 hr. trip) wed. night. Stay in a hotel and my appt. is at 6am on Thurs. Can't believe it's this soon and trying not to hang every bit of hope I have left on getting this "diagnosis".
In other news: Went to my ND on Friday and...as it turns out, they DID NOT order my lyme test from Quest as they told me. After a bad blood draw, a rude nurse, a massive bruise that lasted over a week and an itchy, allergic reaction where it was drawn, she ordered the wrong test and not the lyme panel anyway.
Remember when I called the office and they told me it was negative?!?! Eeerk. But, it's probably better this way anyway, given the rep. of Quest. I will move forward with getting the test through LLMD and Igenex.
Initial blood tests for now show positive for Epstein-Barr and HHV-6, low progesterone and estrogen and high ESR.
Have Rheumy appt. Wed., LLMD thurs., MRI friday.
So...off I go. Wish me luck! Don't guess I'll know anything for a couple weeks, but will post any new findings from llmd.
Posts: 42 | From St. Louis, MO | Registered: Aug 2010
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Good grief. That post should go into a Lyme Runaround archive. Typical of the nutty things we confront when seeking a diagnosis. I hope your appointment with Dr. C goes well.
Posts: 212 | From San Francisco Bay Area, California | Registered: Aug 2010
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Thanks, everyone. Yes, Lymetoo...I'm assuming, I'll just fake it through this appt. However, this Rheumy is the one and only dr. who actually came up with *something* after all this time. She noticed that I have psoriasis (something I never thought related to anything) and dx'd me with psoriatic arthritis.
At least she recognized the pain as being "something" and connected the dots for me somewhat. I've (for YEARS) had Drs. tell me that I'm too young to have arthritis and that my pain was probably weight related or I was wearing the wrong shoes.
I'll be interested to hear what she says about all the other labs (the hormones, the EBV, the HV6) and how it may or may not relate. I WILL NOT connect the dots for her, though, or relay that I'm thinking Lyme. We'll see what she says, but I plan on this being a "yup...you still have arthritis" kind of appointment.
Posts: 42 | From St. Louis, MO | Registered: Aug 2010
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Appt. with Dr. C. went great! Absolutely loved him and wish he was our family doc. For now, I'll just see him as often as possible in order to fix me.
Initial visit doesn't tell you much, so still waiting results. He felt like tick co-infection was highly likely (btw, if people don't technically have "lyme" here, but have a tick-born disease do you still say, 'I have lyme?') total side note.
He noticed how wacky my hormones were from lab tests from current doc who was not being very aggressive with treatment and switched a bunch of scripts to get me back on track and says I should feel tons better once I'm back to normal levels. But, he also thought a chronic strep infection was likely, given my history.
Waiting results. Thanks everyone for the help and guidance. Don't know where I'd be if I didn't have this 'hope' right now.
Even if I don't 'have lyme'...I can't imagine checking in on everyone once in a while. Would that be okay?
Posts: 42 | From St. Louis, MO | Registered: Aug 2010
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Oh, also...of course Lymetoo was right. Should have cancelled the rheumi. I just need to lose weight and up my antidepressant. Also, need inserts for my shoes. LLMD of course has other thoughts, thank goodness he's checking at least.
Did I post all this already?? Sorry, this suddenly sounds very familiar as if I've posted this. *shrug* Just a shout-out to lymetoo for knowing how this works. I'm still learning, I guess.
Posts: 42 | From St. Louis, MO | Registered: Aug 2010
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For now, I'll just see him as often as possible in order to fix me. 
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