Wednesday, May 7, 2014


Sort of......

I have to whine, rant, and vent a bit (more)....

I probably got sick in early or mid-December.  Just ... pretty much stopped getting out of bed.  That's not like me.  I move.  I like to move.  I need to move.

Then came Christmas Day, when it HIT.

On 12/26, I had a scheduled Pain Clinic appointment, and I went.  Not a doc I knew, but I told him about the fever, chills, and dark urine.  He replied, "You should talk to a doctor about that."  It would have been funny sarcasm, but for the fact that it wasn't meant as either.

That day, I stopped into Primary Care, told them what was going on, and that I needed to be seen by a doctor.  January 15th was the first available appointment.  I probably should have gone to Urgent Care or the Emergency Room, but ... I was so tired ... I just didn't care.

We know what happened next, and it was bad.

By the time I was referred to Gastroeneterology (gut) and Hepatology (liver), it was February 5th ... almost six weeks later.

Yesterday's pharmacy guy and I agree: it's quite likely that the anticonvulsant I was given suppressed my immune system, and allowed some hidden infection to rage.

UC Irvine tested me for Epstein-Barr Virus (EBV) and Cytomegalovirus (CMV), either of which could explain every aspect of what happened to me, AND how I'm feeling now.  In both, the test results indicated "past infection," but not "current infection."

So they blew those off.

In looking at those lab test results, Mayo blew those off, too.

But I awoke, this morning, profoundly exhausted ... with whole-body chills ... and went back to bed.  I never go back to bed.  I may WANT to ... but I don't ;-)

When I awoke, I put on my four-pound, fish-bowl glasses and tried to understand the EBV and CMV test results, asking myself .... how long does "current infection" SHOW UP in the blood before it looks like "past infection ??"

The answer was crystal clear: the markers for "current infection" fade to black within "a few weeks."  My blood wasn't tested for these things for six weeks ... from the worst of it (I don't really know what the first of it was .....).

When I had a severe reaction to an anticonvulsant in about 2004, it was believed that the med suppressed my immune system, and allowed some hidden infection to flourish.

When I had a severe reaction to the DPT vaccine in about 2007, it was believed that the vaccine had suppressed my immune system, and allowed some hidden infection to flourish.

In October ... against my better judgment ... I allowed the Pain Clinic to put me on a low dose of another anticonvulsant (to treat neuropathic pain).  I got sick immediately, and stopped taking the med.

Maybe I never got better ?  Maybe that's what set up the liver issue.

There's ample research that shows that anticonvulsants can suppress the immune system.  Other ample evidence says that you can BECOME allergic to ANY med you're taking during that "Anticonvulsant Hypersensitivity Syndrome" immune crisis.

If I can't take this further, with Mayo ... somebody ... somehow ... somewhere ... I'm going to leave Rochester, Minnesota wondering when the next bomb is going to go off.  All it would take is one more good sinus infection, and a course of antibiotics, and ... potentially ... BAM !!


I've now asked three departments if they will refer me to General Internal Medicine.....

UPDATE: Just got a call from the husband of the Rochester, MN cousins.  He works in Gastroenterology research, at Mayo (, as it turns out....).

Bless his heart .... 25 minute call.  I told him what was going on -- what we THINK, what we KNOW, and what I think (with which Mayo doesn't necessarily agree).  

In short, he agrees that this is neither a simple, nor clean, nor straightforward presentation of .... well .... damned near anything.  

[Can I get an 'Amen ?']

He can make no promises, but he's going to talk to the GI/Liver doc who saw me, and talk about how we can poke, prod, and look further -- "peel back the layers of the onion a little bit," in his words.

I haven't had a drop of alcohol since October.  I could use a drink.  Ditto some (more) junk food.  I eat too darned healthy.....

Maybe a burger, fries, and a Coke for dinner.  Take THAT, liver !!!!

Ciao for now ... from ... the still confused, and existentially weary, offices of ... The Gulag.

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