Living with Alpha-Gal Syndrome

 You make plans, set goals and one event can change so much.  May 19, 2021, I found a tick on me.  A trip to urgent care and minor surgery was the only way to get it removed.  Lone star tick, a tick that would change my life.  Within a month I was diagnosed with Alpha-gal syndrome.  Life changing with no cure.

Being diagnosed as AGS positive, I read I could not eat beef, lamb, pork, deer, etc.  Initially, I was frustrated but thought, "I can do this."  The phrase "fin or feather" helped me remember "safe" eating.  What I didn't realize is the amount of mammal in every product we use.  Unfortunately, I learned this as I had case after case of hives that were slow to heal.  Hand and body lotions, shampoo, face cleaning products ... all have mammal-based ingredients.  My husband would fry sausage in the kitchen, and I would become so nauseous that I would need to go outside and sit on the deck until the smell left.  We set up an outdoor kitchen area and he would then cook there so I would be okay.  Eating at restaurants was a challenge since cross contamination was as bad as eating something mammal.  We enjoy eating out with friends and it was challenging to eat "safe" and not be overwhelmed and/or affected by the smells.

The doctor told me it was important to not get bit by another tick.  I noticed I was much more sensitive to the sun and heat but still loved being outdoors when I could.  I researched essential oils and mixed my own tick repellent.  If you smell peppermint and lavender on me, that's what I often include in the mix.  I like to garden and enjoy my flowers, especially my roses.  Ticks love to hang out on grass, trees and shrubs and will often hitch a ride on a pet into your home.  We believe that is how I got the tick bite.  My little pal Dottie is on tick and flea medications, but corgis have really thick fur and we've learned to check her when she comes in the house.

About six months after the diagnosis, I was sent to an allergist.  More tests were run to include a second alpha-gal panel.  The doctor placed me on several supplements.  Keep in mind that gel caps are made from mammal products so even medications become complicated.  But the mix he had me taking began to help with some of the symptoms.  After two years I was finally to a place where my husband could cook his beef and pork with me in the other room.  Anytime he cooked with butter still caused nausea for me but overall things were much better.

At a time when many of my symptoms were easing, I began to have breathing issues.  I was substitute teaching and would have severe reactions to teens spraying perfume around me.  It usually took 6-8 hours before the respiratory issues and exhaustion from the incident improved.  

Fast forward to May 8th of this year.  I woke up to find a tick embedded in my shoulder.  24 hours later, it was so swollen and inflamed that I saw the doctor.  Two weeks again of antibiotics and an encouragement to be careful with ticks.  Within another 24 hours, my reactions and sensitivities were back with a vengeance.  

Alpha-gal isn't the same for everyone.  And a persons symptoms can change over time.  You may be able to eat a bit of cheese today and tomorrow you have a severe reaction.  I've worn my leather band for my Fitbit and break out with hives that take weeks to heal.  My skin has always been sensitive and now it's ridiculously sensitive.  Muscle cramps from hell can occur if I eat something that has a bit of mammal I didn't notice.  I'm still learning to read labels and learn what words are "mammal" based as many things like Carrigan and magnesium stearate are examples of this.  I can eat chicken but I can't eat chicken that has Carrigan injected.  Alpha-gal symptoms can include hives, stomach pain, diarrhea, wheezing or shortness of breath, nausea, vomiting and anaphylactic shock.  

My PSA is this.  Be careful with ticks.  Use preventative measures and if you get bit, contact your doctor.  Record the date of the bite and monitor for symptoms.  Educate yourself on the syndrome so you know what symptoms to watch for.  Anaphylactic shock is the most severe. One of the challenges with AGS is that unlike normal food allergies, the reactions often come 3-8 hour after exposure to a mammal product which leaves you wondering what in the world did you eat that created the reaction?

Just google Alpha-Gal syndrome.  There is so much more information now than there was two years ago.  While the research is beginning on AGS, there is no cure.  My best option is to be extremely careful with products and food and not have another tick bite.  Trust me when I say, this is life changing.  It doesn't just impact me, it affects my family.  They try so hard to be sure there is something I can eat when we get together.  Often, it's easier for me to bring something I can eat and tell them not to worry so much about what I can and can't eat.  Friends and family want to help and I love them for that.  I also know that my reactions are unpredictable and it's more important to share time with them than the meal itself so I focus on staying well.

For more information, search the internet and/or view the CDC information at:

Alpha-gal Syndrome | Ticks | CDC