Alpha-Gal? What’s that?

By Mia Valdez

Tick transmitted diseases are not new, for both horse and rider alike, but are sharply on the rise due to the spread of  tick populations across the US.

Photo courtesy Britta Cruz

Equestrians are, because of the time spent outdoors with our equine partners, at an increased risk of exposure to ticks and therefore contracting tick associated diseases.

More than 75% of reported vector borne diseases in the US are Tick-borne. (Source: CDC) One of the fairly new and grossly misunderstood tick transmitted diseases is Alpha-gal Syndrome (AGS):

What is Alpha-Gal?

“Alpha-gal syndrome (AGS), or mammalian meat allergy,  is a tick-induced allergy to galactose-α-1,3-galactose. This sugar, commonly known as alpha-gal, is found in all mammals except for humans and some primates. Products made from mammals can also contain alpha-gal. These include mammalian meat (like beef, pork, and lamb), milk and dairy products, gelatin, medications, medical products (like heparin and vaccines), personal care products (like lotion and make-up), and many other items.  Reactions, which can be life-threatening, may be immediate, as in the case of injected drugs, or delayed from 2 to 10 hours, as is typical after the consumption of  mammalian meat.”

Source:  www.Alphagalinformation.org

My Story

My name is Mia Valdez. I am fourteen years old, a C+ pony clubber in the Old Dominion Region, with Mountain Skyline Pony Club. I contracted Alpha-gal and Lyme disease in 2021.

I had a huge advantage and was diagnosed incredibly fast due to my mother also having Alpha-gal. Now, you would think that we live in an epi center of tick transmitted diseases, but the reality is that we live in Central Virginia and have been bitten by ticks many times without any dire consequences. Alpha-gal is severely under-diagnosed and is likely the leading cause of Anaphylactic shock in the US on patients undergoing anesthesia these days.

My mother’s ordeal to get a diagnosis is not unusual. Even though she has a medical background and went to the doctor, equipped with the knowledge that she had a tick bite, it still took 2.5 years and five doctors to finally get a diagnosis. The median time from exposure to diagnosis is 7 years.

If you are Alpha-gal positive you may find out in a rather dramatic way by experiencing anaphylaxis. It is likely the fastest route to a diagnosis. Eat meat, 5-10 hours later experience severe allergic reaction leading to anaphylaxis.

Photo courtesy of Britta Cruz

Many people with AGS however do not experience this severe reaction. Instead, like my mother, they become slowly sensitive to all sorts of foods, have systemic inflammation,  joint inflammation, sudden lactose intolerance, gut issues and the list goes on and on.

These symptoms are often mistaken for other problems and are delayed after meat consumption which makes it very hard to pinpoint and connect to mammal exposure.

In my case, I greatly benefitted from my mother’s experience. I contracted a tick bite and reacted with a simple rash after consuming cheese shortly thereafter. I had never had a rash before in my life. My mother quickly had me tested at the University of Virginia, where she sees an AGS specialist. Even I told her that I thought she was overreacting and “seeing AGS everywhere”.

Well, she was correct, I had a positive result for Alpha-gal and was spared the complicated diagnostic journey so many people with Alpha-gal or other tick related disease encounter. Because my mother has become quickly educated through her own tick related illness she knew to immediately get me tested for ALL tick transmitted coinfections. I learned that I also had been exposed to Lyme. This is where the real problem with diagnostics for tick transmitted disease lies.

What I Learned & My Advice Based on This Experience

  1. Get tested for ALL tick transmitted diseases, Rocky Mountain Spotted Fever, Babesia, Bartonella, Lyme, just to name a few. Your doctor may not be familiar with all possible tick transmitted diseases and only test for Lyme.
  2. Be aware that most doctors are NOT familiar with the pitfalls of current testing, timing can greatly impact test results, negative does not always mean negative.
  3. If you have a typical bulls eye rash(Lyme), start antibiotic treatment immediately. Not having a typical rash does not mean you do not have Lyme disease! Having the typical rash means 100% of the time that you have contracted lyme!
  4. You have to advocate for yourself and educate yourself about symptoms, testing and treatments.
  5. If you have odd symptoms such as GI distress and acquire sudden food sensitivities or allergic reactions late at night, these are all hallmark signs of Alpha-gal.
  6. The medical community is so uneducated about Alpha-gal that going to the emergency room can be a dangerous undertaking. Most medications have mammal components and doctors will not always be open to hearing that the medication they just prescribed may cause you great harm.
  7. Dr. Pratt at UVA in Charlottesville, VA and Dr. Commins at UNC are the leading experts in the US on Alpha-gal
  8. www.alphagalinformation.org is a great educational resource
Photo courtesy of Britta Cruz

If you have a tick bite, remove the tick as soon as possible.  There are options to test the tick and the results are often much more reliable then testing yourself for the diseases. You can keep the tick in a sealed ziplock bag to preserve for testing.There are even at home test kits available now.

Most medical providers are not knowledgeable about testing for Alpha-gal. Often the tests ordered are incorrect. Always obtain a copy of the test results. This will be the only way to know if the correct tests have been ordered.

Alpha-gal is a very individualized disease that still, very little is known about. Some people are very reactive despite very low antibodies, even reacting to the fumes of meat being cooked. Other people are able to consume low fat milk without major issues.

You will need to carry an epi pen if you have been diagnosed because an anaphylactic response could happen at any time.

Avoiding mammal and mammal derived products is the only known treatment. Some people do react to their pets. Our dogs are only consuming non mammal feed to keep reactions to a minimum.

I currently do not experience any reactions to my horses. My mother however cannot be in a large barn when manure is being disturbed without it causing respiratory distress.

Be vigilant and use long sleeves when outdoors, treat yourself with a safe tick repellant and treat your animals with the appropriate tick products to keep everyone safe.

If you have a tick, make sure to let your parents know! Watch for any symptoms that could indicate a tick transmitted disease.

Sources:  www.CDC.gov, www.alphagalinformation.org

Photo courtesy of Britta Cruz

This article about Alpha-Gal was originally published in the Spring 2022 issue of Discover USPC magazine. Read more content from that issue.

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