Idiopathic Anaphylaxis

Jenni comes with a bracelet now:

I found the ID tag at Lauren's Hope.  I made the band with beads I found at Hob Lob.  I wanted it to be elastic so I didn't have to deal with a tiny clasp every day.

A few weeks ago I went to the allergist to review my blood work.  Dr. Leo told me that everything looked normal.  But he thinks that I am "allergic to myself".

Great.  I'm not exactly sure what to do with that...

I decided that I needed a second opinion.  So when I was in Utah I made an appointment to see my allergist that I went to growing up.  Dr. Yeates has saved my life and helped me learn to live with my crazy allergies and asthma.

I showed up for my appointment at 8am.  They looked at me confused and said, you're appointment's at 10am.  ?!?  Then I realized that I was in Michigan when I put it on my google calendar and it automatically made it "Eastern Standard Time".  So when we went to Utah and my calendar shifted to MST, it kept the original appointment in EST.  Two hour shift!  Gahhh!!!

When I finally got back to see him at the correct time, I showed him all my blood work and we went over my recent anaphylaxis episodes.  We talked about a lot of possibilities, but he agrees that it is "idiopathic - at least til the idiots like me figure it out."  haha!  He isn't convinced that I'm allergic to myself, there is not enough evidence to determine if it comes from inside or outside my body.

Dr. Yeates pointed out that if parabens effect my skin so violently (remember the Hive Debacle?), maybe I'm having reactions when I eat them.  I was confused - eat parabens?  Yes!  Parabens are in TONS of food!  It's used as a preservative in sauces, desserts, soft drinks, processed fish, jams, pickles, frozen dairy products, processed vegetables and flavoring syrups.  Check out this interesting article about Parabens.

I asked him if he really thought that the bracelet was necessary (cause honestly I feel silly wearing it).  He said "well, you could get a necklace if you would like."  haha!  That's not what I meant.  But he did tell me that I really should keep it on me.  It would help EMTs figure out what was wrong with me more quickly, and those few moments could mean all the difference.

We talked about Epi Pens.  He thought I was silly for not using it last time.  He said I should really think about it like this: "use the epi pen, ask questions later."  It won't hurt me, especially if I'm having a bad reaction to something.  Then I need to get to the hospital to be monitored and also because the epinephrine wears off in ~20 minutes.  Hopefully that will be enough time for the Benadryl to kick in, but if not they could administer a second dose.

We talked about going on Xolair.  It's a shot you get once a month (expensive!) it's prescribed for severe asthma too - so that would help on both fronts.  It binds to the IgE in your blood and prevents them from binding with the Mast Cells - so the mast cells never get the signal from the IgE to deliver histamines to your body.  It's not guaranteed to work, but it might be the only tool we have to be proactive with my idiopathic anaphylaxis.  There are some pros/cons that I need to go over with my Dr in MI next time I see him before making a decision.

Besides discussing Xolair, the only real plan I have is to try and eat Whole30 more often (less processed foods = less parabens).  Then if I do have another unexplained reaction, try to write down everything I did and everything I ate for the past 24 hours.  Then hopefully we'll figure it out over time.

So ya, pretty scary.  Both allergists told me that idiopathic anaphylaxis is pretty rare.  So at least I got that going for me.  I always like to stand out from the crowd!  "Gonna Stand OUT!.... 'til ya notice me."  (Anyone else singing that Goofy Movie song right now?)