Hey Annie,

Sorry for the delay, I haven't been feeling well. Sounds like you haven't been either. How are you feeling today?

I wanted to address some of your questions and thoughts from your last post. Thanks again for taking so much time to think on this and help me with suggestions, it really means alot.

1. I had a doc run a lyme disease panel back in October. It was western blot, so I'm guessing it was accurate at the time. Negative.

2. You are exactly right in suspecting Guillain-Barre. That was the first thing they thought of when I got to the ER. They did several tests to rule it out. I never lost my reflexes, which made GB unlikely. After the various GB tests, the docs said it was off the table as a possibility.

3. We did a chest CT to look for a pulmonary embolism at one point, but we never did a CT looking for a Thymoma. Do you know if it would have shown up on the lung CT scan? The report doesn't mention anything unusual other than opacities in my lungs. I do realize that thymoma is a risk since those striational antibodies are present.

4. I have most of the labs from my hospital stay. Looks like anything that was sent to an outside lab is not here. I called about this and they said i definitely could have those reports, I'll just have to go back for them.

5. I am concerned about the liver and kidney function too. Glad you said that though because the neurologist i just met with seemed really annoyed that i asked if we could run follow up labs just to make sure everything had stabilized. He made me feel like I was being paranoid about it, so I dropped it. I am going to see a new PCP on Monday, so hopefully he will help me draw some labs, just to check on this. Also, I have contact info for the nephrologist who was helping me in the hospital. They did consider diabetes of one type, and they ran tests, but i was transferred to a different hospital before I ever heard back. I will try to call them to follow up.

6. You asked about lupus testing...is that the ANA test? The ANA tests were negative. I was also checked for ESR sed rates, HIV, West Nile, enterovirus, parvovirus, RPR with titer, rheumatoid factor, HSV type specific (the HSV non specific triggered reactive, strangely), Rickettsial disease panel (Typhus and Rocky Mountain Spotted fever triggered positive. Docs think its false positive, even though it continues to show positive in repeated tests), immunoglobulins, complement, coccidiodes (triggers reactive for ab IGM), EBV (positive for nuclear Ag index and EBNA), toxoplasma, cystericus, india ink, ABF, Crypotococcal, VC igm, and lots more.

7. You asked about polymyositis. I don't think that was specifically checked, but i do see a lab for aldolase, which is normal. I don't specifically see a draw for creatinine kinase and aldolase together. Might be worth looking into though.

8. You are right about testing positive for ACHR antibodies while on prednisone. I am not on it anymore, but when i tested positive for it before, i was on 30mg of pred. I was on a taper, down from 1000mg of solumedrol. You are right..I wonder what my levels would have been without the pred. I am going to see if my PCP will order a repeat of this test, just to see what it shows.

9. Your other post mentioned B12 levels with the brain lesion. I actually had a B12 shot not long before all this happened (my former doc thought it may boost my immune system) so my B12 levels are actually really high. Not sure what they would be without the shot though. Wish I knew.

10. Nobody has checked for hemochromatosis or done an anemia profile. Although my regular labs my RBC counts are within normal range and my folate is also normal. I don't see any check for iron or any of the other things you mentioned. I will definitely look into that if I can.

I think that's all. If I missed something, don't hesitate to ask again. Thanks so much for taking the time to help me brainstorm some of these things. Do you think my PCP is likely to be annoyed if I ask for specific labs? How does it work with sending labs to Mayo? Can any PCP office send the ACHR lab directly to Mayo if i ask them to? I have never had to deal with any of this before, so its all new. I think my family is exhausted of thinking these things over, so I am really on my own. Hoping the new PCP and the Barrow's doc will be willing to help me make a plan for staying on top of things. I'm putting a call into that nephrologist to see what he found on my tests and if he recommends follow up.

Hope you are feeling a little better today. You'll be in my thoughts and prayers. Thanks again,

Mandy