An Alpha-gal Update and a Vaguely Funny

 Actually, let's do the vaguely funny first.  

Last week Gary and his sister Gail went on a driving tour to Kentucky and West Virginia and a loop around back home.  I didn't want to go this time, I don't do well on driving tours, Ellen had to work, and it just didn't work this year for all of us to go.  So Ellen and I stayed home and had the care of the chickens and Gail's cat.

Princess, the cat, stayed in our little cat "habitat" that Gary had made several years ago for this purpose. We parked it in the shade and I made sure to take her frozen 2 liter bottles of ice and place on her shelf to cool her off if she needed it.  She did great.  I kept her food and treats in the house, of course.  One morning I got up and found the bag of cat treats on the laundry room floor; torn open with only 2 remaining.  

I had wondered why Smudge hadn't been in to wake me up for her breakfast! Crazy pudgy cat.

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This past week, to make a long story short, I figured out that my Alpha-gal has morphed over into MCAS.  This is my own diagnosis; I would have to be formally diagnosed by an allergist, but from all evidence of what I have gone through I am convinced that is what has happened.

MCAS is mast cell activation syndrome, also referred to as MCAD, disorder instead of syndrome. Since last Wednesday I have gone from reacting to mammal exposure to reacting to any sort of chemical smell, any strong cooking smells.  Everything from toothpaste to detergents, shampoo, deodorant, all sorts of soaps...anything vaguely scented.  

Mast cells are the cells in your body; only your corneas do not contain mast cells, I believe, that release histamine as an allergic response to something they "sense" doesn't belong in your body. I haven't studied it too in depth yet, but it's kind of an immune response.  So as soon as I smell anything scented my mast cells release a freaking massive load of histamine into my system, a histamine dump I have heard it called, which causes my particular reaction.

My reaction consists of; muscle weakness, lightheadedness, brain fog, heart palpitations, rapid pulse and nausea.  I just start feeling sick to my stomach.  The nausea is a fairly new development, just this past week.  These are not typical reactions for alpha-gal.  I have yet to find a dr who believes me. 

On Wednesday I had a series of horrible reactions.  I had been helping a friend clean an Airbnb house over in Windyville 2-3 times per week.  Well, Wed I go over there and was changing the bed sheets when I could feel myself getting a reaction. I coudn't figure it out until I was downstairs and noticed that the kitchen stove was absolutely COVERED in grease.  Apparently they had had bacon for breakfast and hadn't even had the courtesy to clean up the stove.  So I told my partner and we switched houses.  But the house I went to had super strongly scented dryer sheets; plus all the products for mopping and all. After about 3 or 4 hours there I could feel myself reacting as I headed home.  Then all evening it got worse. Finally I had Ellen take me to the ER.  Of course by the time I was able to be admitted my reaction had calmed down.  The ER dr did all sorts of tests, said my heart was fine, totally dismissed that my palpitations had anything to do with alph-gal, and as much as suggested that I had had a panic attack. He also thought I needed to be checked and wear a heart monitor for a time to check on my heart palpitations so they can track when it is happening and what is going on. 

This morning I have a follow up with my primary care nurse practitioner; who I also know is not going to believe me when I tell her. It's to get a reference to a cardiologist to get a heart monitor.  An exercise in futility, but maybe since this alph-gal does affect my heart, it won't hurt to have it monitored and to be checked out.  

In any case, yesterday I didn't go to church due to the amount of perfume and scented lotions I know will be there.  This is becoming very, very isolating.  

But on a positive note; now that I know what is causing my worst reactions I have been going through the house eliminating anything vaguely scented, as far as my own use that is.  I have been showering using just baking soda on both hair and skin, no deodorant-which sounds gross, but if you wash up several times a day and use baking soda to absorb the oils...well, so far even in this heat I haven't noticed any odor. I brush my teeth with just a brush, no paste, several times a day in that same vein.  

All the hand soaps and things in the bathroom I have put in ziplock bags, which annoys Ellen, though she is completely supportive of it all.  Last night I slept in Sunny -for the second night- but I had the best night's sleep I'd had for the past week.   I had suggested to Gary that I try sleeping in Sunny for a few nights to see if that would change things for my reactions.  To see what I was reacting to.  The first night I made the mistake of putting on deodorant...and I reacted to it big time. 

My diet has been severely restricted, more-so than usual for alpha-gal, simply because I kept reacting wildly to all sorts of different things and wasn't aware of the fume reactions to any strong scent...sometimes even strong cooking smells will make me react, like to onions, which are alpha-gal safe.  But now that I know to eliminate anything and everything scented, I will wait until my system is calmed down a bit and then start introducing new foods one at a time to make sure I don't react to them.   

It's like my life has been taken back to square one and I have to figure out everything, EVERYTHING, out from the beginning; what to eat, what to drink, what I can even smell without causing an allergic reaction.

 And no help from any medical doctor whatsoever, so far; aside from the actual alpha-gal blood test.  

Fun times!