Most of my life growing up I loved to sink my teeth into a juicy steak.  I would say I was a “meat and potatoes” kind of girl.  I also have always loved to be outside whether it be gardening, raising herbs or caring for chickens.  Unfortunately, there is a tiny but diabolical insect lurking outside that put a major wrench in those two things for me!

In 2011 I began to have very unusual allergic type symptoms that ranged from severe upper stomach pain, itchy skin, hives and sneezing. I never thought this could be associated with a tick bite but now that I look back I had been bitten by a few lone star ticks in the past but nothing really recent or that stood out in my mind.  The reactions became worse as the weeks went on and I couldn’t really figure out what was causing it.  The symptoms would start anywhere from 2 to 6 hours after eating.  I started paying attention to what I had actually eaten before a reaction and found a common thread with eating beef.  Like any naturally minded person I thought that maybe it was something that was added to the beef so I decided to get some pasture raised organic sausage from my local organic farmer.  The reaction that followed was one that I will never forget but wish I could pretend never happened.  As I was standing at the sink washing dishes after our evening meal I suddenly felt extremely light-headed and faint. This I was later to discover is caused by a dramatic blood pressure drop.  Directly after that parts of my body started to itch intensely and within about 20 minutes I was in full-blown anaphylaxis which is a life threatening condition in which at least two systems of the body are affected at a time. My body felt completely out of control and like it was shutting down.   I had been to an allergist twice that year and was never tested for the allergy, nor was it even  mentioned to me as a possibility  but after this reaction  and testing it was confirmed that I was allergic to a carbohydrate called Alpha Galactose 1,3 found in all mammalian derived ingredients. Mammals are classified as any animal that nurse their young, have live births and have hair or fur. Any type of birds or fish would not be considered a mammal.

Due to the discovery of this condition my life is quite different from it was before, I now must adhere to strict avoidance and carry an epi pen and antihistamines with me in the event of accidental exposure almost all of the time.

It is not yet clear how this condition happens for some individuals but researchers believe that the tick feeds on a deer or other mammal and then bites a human host.  This person then forms antibodies to the sugar found in the mammal previously exposed to the tick and the next time the person consumes mammal meat their body reacts in a negative manner.  Reactions vary from GI distress, hives, wheezing and itchiness and can progress to full-blown anaphylactic shock depending on the person’s immune system and continued exposure to the carbohydrate.

Ticks are becoming so much more prolific now and the condition is becoming much more common especially in the Southeastern part of the United States.  It has also been found in other parts of the U.S  and other countries such as Australia and South Africa.  There have also been reports that other ticks could also be a carrier of this condition aside from the lone star tick.

News outlets and magazines have begun to cover the condition which is a good thing, but many times there are facts that are misrepresented  about the condition.  So let’s bust some myths!

It’s a “Red Meat Allergy” only

Recently this term “allergy” has been changed to “syndrome” by researchers due to the fact that there seem to be other symptoms that trouble many sufferers such as fatigue, joint pain and other autoimmune like symptoms.  Also, this is the only known “allergy” that is actually transmitted to a person by a bite and also the only known “allergy” to a sugar.  This makes this condition different then a common allergy although the predominant symptoms are certainly severe allergy symptoms.

Although it is also true that the allergy symptoms do seem to be brought on by red meat such as beef, it also includes all mammal meat such as pork, lamb, venison AND mammal derived products such as dairy, gelatin, glycerin, magnesium stearate and other products that come from mammals.  It is staggering to many AGS sufferers how much mammal is incorporated into our food chain through these products.  Even things as simple as Vitamin D which is derived from Lanolin is added to many things you would never think of having a mammal product in it such as fruit juice! Accurate food labeling is crucial to those living with this on a daily basis.  I would like to note here that each person’s reactions vary greatly and while some may be able to tolerate dairy and these other products since they do contain less Alpha Galactose than meat there are many that cannot tolerate any of it especially with continued reactions. Each person is certainly different.

Mammal derived ingredients are also found in many medications, vaccinations and can even be found in the gelatin surrounding supplements and medicine!  It is also found in adhesives on bandages, shampoo, conditioner, fabric softener, soaps, detergents and toothpaste.  Whoa! Much more than red meat!

It seems that the reactions have a wide a range according to how full the person’s histamine “bucket” is at that time and also that particular person’s immune system in general. What may cause one person to react may not cause another so it’s very much trial and error as to how the individual will react to each product.

It goes away if you just don’t eat meat for awhile

While there have been few noted cases of people being able to eat meat again this seems to be more like a “remission” then just simply a cure.  Sometimes with repeated bites by ticks or even consuming the mammal meat on a regular basis again it has been known to resurface again after a time of absence.  However, there are some known cases of those that it has not returned and these particular people seem to be younger people. This has still yet to be studied statistically and can’t be said definitively that it goes away as you may have read or seen on the news.

A blood test for an allergy to meat will tell you if you have this allergy

Myth! The standard blood test you might be given for beef or pork for instance is checking whether you are allergic to the PROTEIN in the meat.  Most all food allergies are to the protein in the substance.  A separate test for the SUGAR or carbohydrate in the meat is the one that tests for Alpha Galactose 1,3 which is different than just a meat protein allergy. This is considered a very unique condition because it is actually to a sugar and it is a “vector borne” allergy or syndrome.  Which simply means a person contracts it from a tick rather than just being born with it or developing it without this aspect. I will place information below for the particular lab that performs the AG test for you to take to your doctor.

As long as you don’t eat mammal meat you will not react

Possibly the case for some people but there are many others that are also affected by smaller amounts in gelatin capsules whether it be from medications or vitamin supplements, glycerin, “natural flavors” possibly, or even magnesium stearate and dairy.  There are also several noted cases of fume reactions to mammal meat being grilled or cooked. If you have been diagnosed with this syndrome and are still having off and on random symptoms that you can’t pin down try eliminating more of the mammal products and see if you feel better.  I thought I was fine by just eliminating meat.  I was continually getting a rash on my face though and was told it could be lupus or rosacea.  When I became very ill with mysterious sores down my throat and mouth for three months that even caused an Ear, Nose and Throat MD to be stumped I eliminated all mammal derived ingredients and the rash has not returned nor the sores in my mouth.  Everyone’s body is different and reacts differently which makes this a difficult condition to deal with for those diagnosed.

 

 

Prevention is Key

I can’t stress enough how necessary it is to prevent tick bites for yourself and your family members.  This condition can be quite hard especially for children because mammal can be hidden in so many foods it is a challenge to keep from ingesting some of these ingredients unaware.  Don’t take it lightly and if you are going to be in grassy or wooded areas with a lot of undergrowth wear protective clothing and spray clothing with permethrin or Deet.  If you have large tick populations in your yard take precautions to control the population by either spraying the yard with Permethrin which is a fairly non toxic substance to humans and animals or if your property allows and you raise animals there are birds that consume large amounts of ticks such as guineas. There are also products that can be purchased at your local hardware store that kills ticks. Check your clothing when returning inside from spending time in these areas and throw clothing directly into the washer for cleaning right away rather than leaving clothes in your bedroom.  Check non conspicuous areas on the body such as behind ears, scalp and folds of the skin. And of course check any pets that may be going in and out of your home that ticks could be hitching a ride on right into your house or worse yet your bed if your pet sleeps with you!

What happens if you find one attached to your skin?

This is the particular protocol I use for myself due to the risk of Lyme disease, STAARI, Rocky Mountain Spotted Fever and of course Alpha Gal that ticks transmit.  I first carefully remove the tick with an inexpensive twist tool that can be found very easily and inexpensively on Amazon.  I wipe the bite with alcohol and then apply a drawing agent right away such as Prid or a Bentonite clay paste.  I leave this on the bite and reapply for 24 hours.  Place the tick in a freezer bag with date, person bitten, and place bitten and stick in the freezer overnight.  I will then send the tick to a lab to test the tick for co-infections that cause some of the diseases listed above.  There is not a particular co-infection known for Alpha Gal Syndrome at this time so with that one you will just simply have to watch for any allergic type symptoms that may crop up.  While I am waiting for the tick to be tested I personally take Oil of Oregano capsules (not the essential oil) a couple of times a day for a week along with some extra vitamin C.  There are of course variations to this protocol such as choosing to wait a few days to send the tick in to see if any symptoms do arise first.  Others choose to go directly to their doctor and begin a preventative medication for Lyme disease while waiting for the result from the Lab. It depends on how you feel the most comfortable approaching it.

Alpha Gal Syndrome is a new and evolving condition that may be affecting a loved one or yourself personally in the near future.  As with any challenge in life arming yourself with knowledge, courage and faith above all else we discover that there is no obstacle that can’t be faced together.  Help those with this condition by spreading awareness about it so that when they go to their local restaurant the staff has actually heard of AGS and is able to accommodate them with safe food or if they are in an emergency situation the EMTS and trained medical staff will be very aware of the condition and know right off hand which medications are safe to use to help them.  Spread awareness so the AGS child can have a safe school trip or lunch and no worry about a reaction.   Most of all help spread awareness so others will be mindful of tick exposure so they never have to face this life altering condition at all.

Please see below for Resources that may be of help.

Intro video for those newly diagnosed.

Lab that tests for Alpha Galactose 1,3 to show doctor.

Lab testing for ticks borne co-infections.

Tennessee Alpha Gal Support Group

Alpha Gal Syndrome Support Public Page

The Alpha Gal Kitchen Facebook group. (All about AG safe food and recipes)

Tick borne United group

 

Disclaimer: I am not a doctor and this is not meant to be any sort of medical advice I am just merely sharing my experience for educational purposes. Please consult a tick borne literate MD if you have any issues that need medical advice.