“Nine EpiPens in a month.” The burdens of Lyme, AGS, and more.
Cortney McCord delivered the following public comment at the Oct. 25 meeting of the federal Tick-Borne Disease Working Group.
I’m Cortney McCord, a registered nurse from Tupelo, Mississippi. Since May 8, 2021, I have been in a battle for my life against alpha-gal syndrome, Lyme borreliosis, bartonellosis, babesiosis, and mast cell activation syndrome.
I developed the most severe clinical presentation of alpha-gal syndrome: I react to airborne and contact exposures as well as dietary exposures to alpha-gal.
For me, it’s way more than just a meat allergy.
In January 2022, my infectious burden grew after I contracted COVID. COVID sent me into full-blown mast cell activation syndrome and made asthma and chronic urticaria a part of my daily life.
After being gaslighted by a local allergist who was ignorant of mast cell activation syndrome and airborne alpha-gal reactions, I made an appointment with expert allergist and former Working Group member Dr. Scott Commins. I am thankful to have him in my corner even if it takes a 12-hour drive to see him..
Patients like me do not have the luxury of time to sift through a myriad of ignorant doctors to find someone familiar with their condition. Because symptoms of tick-borne infections, alpha-gal syndrome, and mast cell activation syndrome are manifested in every organ system, physicians in every medical discipline should be literate in these conditions. Nobody deserves to be gaslighted because of a lack of physician education.
Another tick bite
I was bitten by another larval lone star tick at the end of this past August. In September alone, I had to use nine EpiPens. All of this from a tick the size of a speck of dirt.
In addition to long Lyme, I believe I have long COVID complicating my clinical picture.
Long COVID and long Lyme are very similar. Both Sars-CoV-2 and Borrelia burgdorferi are persistent in tissues. Both affect the host’s immune system. Both can cause mast cell activation syndrome. The medical world has no problem saying that COVID is a persistent “long” disease. Why is that not the case for persistent ‘long” Lyme borreliosis? There are stacks of good science supporting persistent “long” Lyme infection–some of which was done by current working group member Dr. Monica Embers.
I refuse to believe that this is the best that our medical and scientific community can do. Testing for both mast cell activation syndrome and tick-borne diseases is abysmal. That has to change. There should be a law requiring alpha-gal to be listed as a major allergen on every medicine, food, and consumable product that Americans have contact with. We need the Tick-borne Disease Working Group to continue in perpetuity because tic-kborne conditions will affect more and more Americans as our planet warms.
Please help me. Ask Congress to address these needs. Thank you.