Tuesday, April 29, 2014

Mayo - 4/29/14 - Lunchtime

It's snowing, so the heat is on in every building.  Hotel room is 28% humidity WITH my travel humidifier going.  Big trouble -- eyes and sinuses

Due back at Hepatology at 1pm, but the initial feedback isn't good.

Mayo doesn't -- apparently -- DO the sort of genetic testing necessary to determine why my body has drug-related problems.  The hepatologist talked to another Drug-Induced Liver Injury Network doctor (from Indiana) to see what sort of testing they recommend, and where/how it can be done.

Awaiting response.

BUT ... the hepatologist agrees that ... a diagnosis of some genetic defect that causes me to metabolize drugs differently ... isn't actionable.  It just becomes a really bad diagnosis that I'd have to live with.  Says that's true if it's metabolic, if it's genetic, or if it's mitochondrial.

He's going to follow up on that sort of testing -- who can do it, how, and where -- but is moving forward on the assumption that there IS a fundamental problem with my body and prescription meds.

So he's going to talk with Allergy and Immunology about drug testing me -- picking a handful of drugs and trying to test my body's reaction TO them, either in a test tube/petri dish or ... via skin testing.

Two major issues:

  1) This testing isn't 100%.  I can test "okay" to a medication, and still have a major reaction to it;

  2) They have to pick and choose which drugs to test.  How do you do that when I have a Primary Immune Deficiency that seems to render me susceptible to all kinds of issues -- viral, bacterial, inflammatory, and fungal ??  And chronic pain that we've yet to find a successful management strategy for ?

He's going to have Radiology look at my liver MRI.  He's not sure that the "stricture" California saw WAS a stricture.  It could have been pooled bile.  Not actionable.  Wouldn't change much.  Would only rule out a few things that would just be worse, anyway.

They also drew about nine more tubes of blood.

He's not sure what to make of the ongoing viral, fungal, and bacterial infections subsequent TO the 12/25/13 crash.  I guess I'll be taking that up with Immunology.

He's also not 100% sure that whatever happened IS purely drug-induced, and didn't have some viral/autoimmune problem that underlies it.  Wouldn't mean I'm NOT at risk, in terms of taking meds, going forward.  Just doesn't think this is a clean, clear-cut, or simple presentation.

He agrees with my alternate theory, that ... too much or too many drugs at the same time can simply trigger this, even if I don't test "positive" to any of them, individually.

You can't test for everything, in every conceivable combination.  Even if you could, it's not guaranteed.

So ... yeah ... Russian Roulette ... Pharmaceutical Style.

I'm still fighting for a referral to Mitochondrial/Genetic.  Should have no problem being seen by Allergy/Immunology.  Will try to be seen by the ENT (Ear, Nose, and Throat) people, concerning the ongoing sinus infections.

Got some lunch.  Going to lay around for a bit, before heading back to Mayo, via the underground tunnels.  I'm not as fascinated by the snow, wind, and cold as I might otherwise be .... ;-)

Ciao for now, then ... from the Blustery Arctic Offices of .... The Gulag.

1 comment:

  1. Dear One,
    A big slog, huh? The one advantage of Mayo is you don't have to wait months for this info. Here's hoping for more clarity.
    Go buy a bigger humidifier.