I have my second appointment with my new (and really great...so far) LLMD tomorrow morning. It was supposed to be at noon but she had to reschedule it so now it's at 9am. Yikes! I'm just really glad I only live twenty minutes away.

Anyway, I don't really have any questions about anything which is nice for a change but I just wanted to post this here so that maybe I could feel some support when I'm there tomorrow. I'm going alone which I don't normally do. Usually my mom goes with me but she hasn't been feeling well lately (she has Lyme, too) and she can't make the trip up here to go with me. I think I'll be okay by myself but it's nice to have the support (and memory) of someone else there with you.

I'm keeping my fingers crossed that I keep moving in a good direction with this LLMD. I finished my month of Levaquin and Nexium but the herx never stopped and now, three days off it, I'm still feeling like s***. I'm not sure if she'll want to put me back on them or if she'll just keep going with the plan we laid out and try to get me set up to start IVs in July. Either way, I do feel good about it and feel I can trust her to know what she's doing. It's a nice feeling.

I'll let you all know how it goes.

--Annie

What are you most intrepid about--driving
alone or just going alone? You feel pretty
good about this new LLMD, and you seem to
have faith in her.

Go with your gut and be honest about your
health right now, your questions, anxious
thoughts, etc.

I have a feeling you will do just fine.

We will be with you in spirit tomorrow!

I am so pleased that you are liking your doc, even with the 'so far' comment.

You might think about taking a small tape recorder with you to your apt. as an extra set of ears.

I know in my apts., there is so much info floating around that most of it floats over my head, and I usually have to call back up afterward to ask a few questions.

I have always thought this would be a great idea...but always seem to forget it when I am packing

Be sure to write your questions out before hand, and take your symptom journal too.

If you haven't seen this already, there may be a few points here as well:

Making the most of your LLMD visit: http://flash.lymenet.org/ubb/Forum1/HTML/020605.html

Best of luck, and let us know how it went, OK?

Melanie

So, the thing I'm not as happy about is that she wants me to have a picc line instead of a port. I understand her reasons for wanting to go the picc line route - less invasive, less chance of really dangerous infection (although I know the risks are there). But, I had trouble getting my first one in, I have bad veins, and if I'm pulsing a port makes more sense to me. But I'll go with the picc for now at least. I'm going to be on the IVs for a minimum of four months, probably longer than that, so a port may be in the picture down the road if my picc fails. I'm going to have it put in in my right arm (unfortunately I'm a righty) because I only have one good vein and it's there. This vein is the vein they always use to draw blood from so she said they'll probably have to draw blood from my hand while the line is in. Ouch! Oh well. If the vein fails, she said, I'll get a port. But, for the sake of saving myself some grief, I hope the vein holds up at least for a little while.

I also got the results of some tests I had done a month ago. I had tests done at Bowen and Igenex but for some reason the Igenex results didn't get to the office so I didn't get them when I was there today. She said they'd call when they get in touch with Igenex and get the results. But, my Bowen Q-RIBb was positive! It was 1:64 which is almost the highest! I was very shocked when I saw this but also extremely relieved. I'm so happy to have this result to back up the diagnosis. I don't know why I never had this test from Bowen before. I also had my CD57 tested and it was 15 which my LLMD says is extremely low (according to Dr. B at least). So, we'll keep an eye on it and we can use it as a marker for whether or not things are improving. I wonder why I never had this tested, either!

So, that's the deal with the appointment. Like I said, I'm really really happy. I called my mom after the appointment (she usually goes with me but is having trouble with her own Lyme) and she congratulated me. Kind of a weird thing to be congratulated on but it seems appropriate. I finally feel I'm on the road to recovery! Yay!

Thanks to everyone who sent positive thoughts my way. They obviously did their job!

--Annie

I am so glad that you had a great visit with your llmd. I think that half the battle is having the guidance and support of a good doctor. Sounds like you are on a good path. Please keep checking in to let all of us know how you are doing.

The QRIBb test stands for (not sure what the Q stands for) Rapid Identification of Borrelia burgdorferi. It's a fluorescent antibody test where they basically look for the antibodies by staining the sample and looking at it under fluorescent lighting (at least as I understand it). You can get more info about it at www.bowen.org/lyme_testing.htm Bowen is the only lab that does this test. I got to see the pictures from my test, they're pretty cool. I wasn't sure what I was looking at but it was still pretty cool.

CD57 cells are a kind of natural killer cell and there is a panel (blood test) that measures the levels of all your natural killer cells. There's a very good article about it in this post: http://flash.lymenet.org/ubb/Forum1/HTML/025286.html Basically it's believed (although not proven) that there is a relation between Lyme and the CD57 level. A lower level means worse infection. A higher level means there is possibly some progress in treatment. I *think* what my LLMD said was that below 50 is considered (for Lyme stuff) to be very low and that it really needs to be over 100 before treatment is stopped or there is a very high chance of relapse. It's an interesting test, I'm just learning more about it myself. You might want to ask Dr. L about having it done at your next visit. And I'm glad to hear you finally got in touch with my LLMD's office and have an appointment. When will it be?

--Annie

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``The best way out is always through.'' -Robert Frost