“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 tick-borne conditions will affect more and more Americans as our planet warms.
Please help me. Ask Congress to address these needs. Thank you.
This is truly a complicated case, but most are in my experience.
While all patients deserve to be heard and treated properly, throwing yet more money at the TBDWG which is filled with people who do not believe in chronic infection, and which has done ZERO to help patients is not helpful. IF, and I mean IF any money is appropriated to study this, IMO – whoever is doing the work needs needs to be independently funded. Researchers can not be the regular cast of characters – receiving grants from corrupt public health agencies, that is literally a Cabal regurgitating old, outdated, highly myopic work which is designed for a pre-determined outcome and completely ignores a huge subset of people.
Unfortunately many patients and even advocates are oblivious to the sordid backstory of the corrupt agencies controlling research and funding. Insanity truly is doing the same thing over and over and expecting different results. Time to ditch the public health monopoly and public health agencies controlling research, funding, doctors, testing, treatments, and “vaccines.”
- https://madisonarealymesupportgroup.com/2022/09/19/cdc-who-beyond-hope-rehabilitation/ Please read to find out why I am diametrically opposed to Lyme Disease Organization’s (LDO) suggestion that we should “fund and support a directive for CDC to conduct a review of CDC webpages and the current continuing education modules?”
This isn’t just a “no”. This is a “hell no”.
More money will not make the CDC honest. Their long track record doesn’t lie.
The CDC is irredeemable and beyond all hope & rehabilitation.