Monday, May 12, 2014

Movement ??

I got in to see Primary Care, this morning.  Yea !!

Next steps:

 - Cytochrome P450 testing (DNA test, from saliva)

 - referral to Dermatology (the ongoing skin issues, since the Christmas crash)

 - referral to Infectious Disease (look for 'hidden' infections, like Cytomegalovirus, Human Herpesvirus, Epstein-Barr Virus) that may have flared up and caused the hepatitis

 - referral to Immunology (try to figure it all out)

On Friday, I placed a call to, and spoke to, one of the two authors of THE book on Drug Induced Liver Injury.  

She was great.  

In short, she thinks my theory about DRESS Syndrome/Anticonvulsant Hypersensitivity Syndrome is a whole lot more likely than the Cymbalta thing.  She also thinks that the Lymphocyte Toxicity Assay (testing for which I've been pushing) is exactly the right way to be sure, since it's VERY accurate in determining a genetic, flawed response to anticonvulsants.

Also, I once had a fairly severe reaction to Bactrim (a sulfa antibiotic).  She was pretty sure there was "cross-reactivity" between Sulfa and anticonvulsants.  

That means ... those who react adversely to one are highly likely to react adversely to the other.

As I think I did.

I checked.  She was right.

She was SO great on the phone ... that she even said ..... "I don't think your case is all that complicated.  You probably should have the P450 testing, and should stay away from anticonvulsants and sulfa drugs."

[sounded eerily familiar to me, since it's pretty much what I've been saying ....]

I would still want somebody to look at the neosensitization thing, out of an abundance of caution.

This is the problem with Mayo's approach.  Rather than rule in/rule out that I have an immunological problem with anticonvulsants (that would explain everything), they found it easier to warn me off of any and all "non-essential" prescription drugs.

Still not sure how long I'll need to be here, but .... things are starting to move, once again.  

I'm just going to have to put North Carolina on hold.  They really want to enroll me in one of their studies, for which you need to be seen within six months of the liver event.  That would put it at late-June.  I'm not so much looking to be in a study, though, as I am trying to figure out what happened, why, and how to avoid it in the future.

Besides ... if I'm right (and I think I am), then this is really much more about Immunology than it is about Gastroenterology and Hepatology.

So ... hold that thought, UNC.

I also spoke to the lab, this morning.  The ... er .... stool sample DID get processed, and the results WERE put live.  They told me to get in touch with IT (basically) to figure out why neither I nor any of the doctors could view the results.

One day at a time.......

Ciao for now ... from ... the cool, rainy, overcast, and generally NOT Southern California weather of ... The Gulag.

No comments:

Post a Comment