Wednesday, May 14, 2014

Allergy/Immunology, revisited

Ohhhhh-kay.  'Nother update.

Just met with the Chief of Allergy again.  This worked.  He didn't seem rushed.  He seemed very open.  My play went something like this:

"You've got a TON of patients to take care of.  I just have one: me.  I think I can add value, here."

Told him who I'd talked to, what I learned, and what I believed.  He said ... "I think that makes sense."  He checked my chart for when I had taken the anticonvulsant, and said ... "Yep.  That fits."

If at all possible, he will order the Lymphocyte Toxicity Testing.  The only place I knew of was up in the Toronto (Canada) area.  I showed him the PDF.  He jotted down all the relevant information.  As long as the Mayo lab can draw the blood, package it up appropriately, and ship it out appropriately ... we can get this done.  We'd plan to check the anticonvulsant AND the Cymbalta.

I talked to him about "neosensitization --" could I have become 'reactive' to other drugs taken during the same time.  He wasn't really aware of the concept, but took the time to look at the peer-reviewed paper that I showed him.  He thought the conclusions were sketchy, the sample size was very small, and that the risk was extremely low.  I actually tend to agree, but .... wanted to cover it out of an abundance of caution.

And ... I mentioned ... since THREE docs have now mentioned HIV as something that would explain my immune and medication reaction issues ... though I'm HIV-negative ... I said "It sounds like we're talking about some fairly serious immune problems, if they're consistent with HIV."

I asked him about evaluating my B-Cell and T-Cell function.  While my total lymphocytes are normal, he WILL check the B and T cells underneath that count.  Frankly, if there's an issue there ... nothing can be done about it, but ... I still want to know.  If you know what it's called ... you can keep track of ongoing research and developments.

When I explained my read on the history of my lab work regarding EBV and CMV, he agreed: the whole AHS/DRESS > immune suppression > viral reactivation thing ... fits perfectly.

This guy's sold.  Now, it's just a question of pinning down the trigger and staying FAR, FAR away from it.

Infectious Disease, tomorrow morning.  We have a few things to look for and discuss.  They may or may not merit treating.  Unclear.  I smell .... yet another blood draw ;-)

And then ... Internal Medicine.  I have to talk with her about things that follow AHS/DRESS, and ... not too UN-commonly ... like .... autoimmune diseases and something called "Fulminant Type 1 Diabetes."  

1 in 5 die from AHS/DRESS.  It's pretty serious.  It can have recurring consequences over the long-term ("sequelae").  I have to get a better understanding of what to watch for, how often, and with whom.

My family's oldest and dearest friends .... Barb and Don ... paid for me to go eat at the best-reviewed restaurant in Rochester, MN -- Pescara.  I'll do that tomorrow evening.  Wonderful people.  Really incredible gesture.  So ... if you're out there .... thanks SO much, Barb & Don ... as always.


  1. Sounds like you're making progress -- everything does fit with what you're saying, at a cursory glance. It looks like the neosensitization study -- small, like you said -- mostly involved antibiotics? Hopefully, the classes of antibiotics you were taking then, in addition to sulfa, might be preferentially avoided in the future, while still hopefully leaving *some* options?
    But mostly, it seems like a cascade of overwhelming immune response and trying to process those drugs at the same time. Yeah, avoid anti-convulsants...and to be sure, you might just HAVE to start drinking EtOH -- in the name of science! -- which would only STRENGTHEN the hypothesis that it was something else: a temporary (but critical) state that occurs only when you're on anticonvulsants.
    Get better, and get out of Minnesota! Though if you stick around long enough it's bound to start getting nice there.

  2. I'm gonna' have to get over Beer Fear first, but ... yeah :-)

    Leaving on Saturday. Will land DEN in the afternoon, then Super Shuttle back to my old faithful Extended Stay America hotel in Lone Tree.

    Planned 2nts there. Probably up to the Fort after that. THINK I still have a car in the area. Have to check on that.

    Stay tuned, and ... one way or el otro .... see you soon !