Tuesday, May 6, 2014

The Wind Just Changed Direction ... if only slightly.....

This is the way it goes .....

I just met with ... Medications Management (or something like that) -- a really cool guy with his Pharmaceutical Doctorate degree.  

USUAL CAVEATS: Long story short, my words -- not his, but .....

He doesn't know why Mayo booked me with Gastroenterology/Hepatology, and NOT a Primary Care doc to coordinate all of this (neither do I).

He thinks I NEED to be seen by a "really good" Infectious Diseases guy, since he believes some of these med reactions HAVE suppressed my immune system, and could EASILY have reactivated some underlying virus or infection.

Of course, HE can't refer me to any of those groups, but ... more on that, later.

He went through all the meds with me ... to which I'd had noteworthy adverse reactions, and ... using the Up-To-Date website ... we evaluated how each was metabolized.  The Cytochrome P450 enzymes are largely responsible for breaking down things like drugs.  

In humans, it's believed there are about 57 such enzymes that matter.

Each of the main meds to which I've had an adverse reaction, and ... all five of the meds I was on when the Christmas thing happened ... are metabolized, at least in part, by one or more of THREE different CYP enzymes.

It looks like they (Mayo Labs) CAN run genetic testing (to look for disorders) for those three CYP enzymes.  Doing that is a no-brainer.

It looks as though Mayo can test for a number of OTHER CYP enzymes (to see what other classes of drugs MIGHT kill me).  That is a no-brainer to me, but will undoubtedly take me fighting with Mayo and/or my health insurance carrier.

It turns out I have a cousin, here -- a retired Administrator from Mayo.  It turns out ... her husband is a Mayo Gastroenterologist/Liver Doc.  I've reached out to them, and should talk to them tomorrow.

The PharmD's notes are going to be sent back to the Genetic/Mitochondrial doc.  She (the Mito/Genetic doc) referred me to Pharmacy.  That's how it works.  She would also have to decide what testing to order, and order it.

I'm going to have to push for a few things .... probably starting with Gastroenterology, and HOPEFULLY with my GI doc cousin's assistance:

- a referral to a GREAT internal medicine doc ... hopefully leading to

- a referral to a GREAT infectious disease doc, and

- as much of the P450 testing as I can get

Mayo's been tough, Folks.  They were tougher than me last time, and they're tougher than me this time.  I've been pretty darned sick, and really darned exhausted.  There's no fight left in me.

This PharmD guy .... rekindled a tiny ember .... not yet a spark ... but a tiny ember in me.  

He was my last scheduled appointment (outside a 5/12 Psychology app't that I was leaning toward canceling).  When he asked me what was next on my schedule, I told him that: nothing.  He seemed genuinely and deeply troubled by that ... FOR me.

This isn't likely a game changer.  The most it does is support my long-standing belief that:

- I have something very basic wrong with my immune system

- I have some underlying infection(s) that recur during times of stress

- I have some problem with how my body processes medication

Figuring out something in the infection group .... as always ... points to meds to treat.  That puts me squarely in the face of that third problem ... again.

Getting these referrals won't be easy.  

Getting the reasonable and appropriate testing authorized and ordered won't be easy.

Getting a solid diagnosis(es) won't be easy.

Treating whatever they do find won't be easy either.

But at least I had one guy who basically said to me: don't go home.  Don't give up.  Not yet.  It's not over yet, or ... at least ... it shouldn't be.

Stay tuned.....


  1. re: mitochondrial testing, well, it would have been quite rude to blame Mom right before Mother's day!
    CYP3A4: Gonna lay off the grapefruit, just in case?

    Jokes is all I got. We miss you and are excited to see you...within the next week or two?!

    1. :-)

      This IS THE time to be _thinking about_ Mom. It just so happens my thinking's a bit disordered, just now ;-)

      Yeah. Odd, huh ? I was drinking eight ... nine gallons of fresh squeezed grapefruit a day, in early December.

      I chalk it up to sheer coincidence, though :-)

      Miss you, too. Still ticketed for 5/10, but ... subject to change .....

      Hey. Update the FRR, slacker ! :-)