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.

Friday, April 4, 2014

Mayo = BOOKED !!

I'll be flying to Rochester, Minnesota on April 28th.  I scheduled a return flight for May 10th, but ... that's subject to change.

This morning, I heard from the original liver doc: he agrees ... the low platelet count thing could be serious.  He wouldn't have expected it this far out, after the initial ... whatever.

We'll re-check that in about a week.  

He reviewed the results of the liver biopsy.  He agrees: drug-induced liver injury.  He agrees: it's the Cymbalta.

But he still seems to think that -- as long as the liver enzyme values are coming down -- all is well.  

I won't argue with him, but I don't agree with him.  Nuh-uh.  I've learned too much ;-)

So I'll go to Mayo.  From there, I'll fly to Denver, see some family and friends, and ... fetch my car.  Not entirely sure how I'll make the 1,000 mile drive back, but ... one mile at a time, I guess :-)

Gotta' handle a few logistics.

But there it is.

Thursday, April 3, 2014


Daylight come and me wan' go home.

I'm working with the 'original' Mayo Clinic, in Rochester, Minnesota, to schedule me with their team.

It appears that thrombocytopenia (declining platelet count) can BE the result of a drug-induced liver injury, but it would normally have resolved by now.  

It's also a known, but rare, side effect from Cymbalta.

But my laundry list of questions remains unanswered, and ... based on the research that I've pushed my visually-impaired self to do ... the questions are pretty critical.

There's a lot of information that says ... if this was a drug reaction, I might now be sensitized to OTHER drugs as a result.

A couple of the docs have told me that ... if you're labs come down ... when they're back to normal ... it's all over.

Not true.

Studies that follow people with a drug-induced liver injury show that the liver injury can often BE permanent, or even worsen over time, despite having stopped the offending med.

The worst cases were those who did NOT stop, or re-started, the offending medication.

So ... while the primary liver doc tells me I can start back on the meds (if I avoid NSAIDS) ... I absolutely and strongly disagree with him.

It looks like there ARE ways to do blood tests, and:

  • know with virtual certainty which drug it was
  • know with virtual certainty what other drugs could cause me problems
  • know if there's a particular problem with the way MY body metabolizes drugs, and ... if there is ... while it would mean avoiding a whole bunch of different meds ... we could drastically reduce the likelihood of something like this happening again
We should also be able to figure out if there's some underlying immune thing (in addition to the IgG Subclass Deficiency that Mayo diagnosed in '07) that sent my body into a flurry of viral, fungal, and bacterial infections after this liver thing.

Mayo can whip through a guy like me in 5-7 +/- business days.  So ... maybe two weeks in a hotel, spending 8hrs/day playing lab rat ... and ... with luck, I'll have the whole story.

As I implied in that other blog post ... 

Hey, Man ... I GOTS to know :-)

Stay tuned.....

Tuesday, April 1, 2014

Platelet count is dropping

It's CALLED Thrombocytopenia.

But that means next to nothing.

It can be caused by a million different things.

I put in a message to my docs.  This looks like a pretty clear trend, downward.  Last Wednesday's blood draw, though, showed it's now below the low end of the "reference range" (150).

You have to hope the trend doesn't continue on its current trajectory, otherwise ... Very Bad Things will happen in less than a month.

Anybody getting tired of this yet ???


Stay tuned :-)