This is a deeply personal story about how the Centers for Disease Control and Prevention (CDC) ruined my life. Let it be known that I am a big fan of vaccines—I have many of them and love them all. I also support prescription drugs – again, I am on many of those and they are lifesavers – although I do not support Big Pharma.) I will not be covering the scope of the CDC’s horrific failings: see the AIDS epidemic (see this letter from Act Up San Francisco in 1988 https://aep.lib.rochester.edu/node/49111), the COVID pandemic, etc. No, my beef with the CDC is, as I noted, personal and specific.
There is a silent and fatal pandemic sweeping the US and overseas. It is a tick-borne illness called Lyme Disease (Borellia). I, unlike the average person, know the mind-numbingly catastrophic effects Lyme and its oft-ignored co-infections can have. I am living it. The CDC, however, thinks I am faking.
The first time I was diagnosed with Lyme Disease, I was 12 years old. I grew up in Boston and on Cape Cod in Massachusetts, an area known for its massive tick population. I knew what Lyme was before I was diagnosed. It was a frequent occurrence in my life for people to find ticks on themselves and go on a quick preventative course of antibiotics if the tick tested positive for Lyme or if they had a certain rash(https://www.bbc.com/news/health-47198019). My diagnosis did not fit either of these criteria. Rather, I had recently suffered a traumatic brain injury, which severely weakens the nervous system and thus the immune system, and when I took a test for Lyme, I had a few markers for the Lyme infection. In fact, according to the CDC, I did not have enough markers to warrant a diagnosis based on the tests; rather, my diagnosis came from the inconclusive tests and my suggestive symptoms.
Fast forward a decade. Yes, ten years. I am 22. I have spent time in a mental hospital. I am on psychiatric drugs. I have such severe migraine disease I almost dropped out of college. I am unable to exercise due to fatigue and had to quit my elite college sport. I have gained weight and lost muscle mass. I can barely work part time. I give myself a shot of anti-CGRP medicine once a month (migraine preventative drug) and I get 40 shots of Botox in my face, head, and neck every 12 weeks. I have a severely limited diet. I developed obstructive and central sleep apnea. I have extreme GI issues. I am not getting better.
I was fed up and hopeless. Doctor after doctor had no idea what to do with me. Most of them told me to do intense exercise three times a week to lose weight and that would fix me! As many spoonies (https://www.patientsrising.org/what-is-spoonie/) have experienced, my tests all came back “normal.” No iron deficiency, no thyroid issues, no endometriosis, no Ehlers-Danlos, no more Lyme disease (ostensibly), and the list goes on. But I knew something was wrong. So I went back to when everything started deteriorating–Lyme and my concussion. I decided it was time for a Hail Mary. Thanks to @tickbootcamp on Instagram and the Global Lyme Alliance, I was able to find a Lyme-literate doctor close by.
I had been right all along. Not only did I still have Lyme (almost definitely the same infection I had when I was 12, including at least one more infectious tick bite), I had two other severe tick-borne illnesses I had never heard of; babesiosis and bartonellosis. A host of other issues came to the surface as well. Finally, finally, finally, all my symptoms made sense.
Back to the CDC—this will get technical. When Lyme was discovered in the late 20th century, the CDC set the standard that in order to test officially positive, five “bands” had to be labeled as “reactive” on the Western Blot test. The Western Blot is taken, in fact, to confirm the results of the first test your doctor gives you, called an ELISA. However, ELISA tests have terrible sensitivity and only give accurate results 35-50% of the time in early cases, which is when most people test. Yes, you read that correctly. Try to understand how insane that is; you might as well flip a coin if you have certain symptoms to decide whether or not you have a possibly fatal infection. (https://www.columbia-lyme.org/diagnosis)
The CDC is doing nothing about the negligent standard of ELISA test, which, once again, has the accuracy of a flip of a coin. Imagine if that’s how accurate MRIs were, meaning brain cancer could only be diagnosed with a 35-50% accuracy rate. They also have not reworked their requirement for five reactive bands on the Blot test either, despite the fact that hundreds of Lyme researchers, doctors, organizations, and patients (like myself) have proved that 3 bands is adequate. In fact, you could theoretically test negative on the ELISA but still have five or more reactive bands—but it wouldn’t matter because doctors take the ELISA as gospel. From 2011 to May of 2021, I only ever had three reactive bands, and my ELISA test was always fairly inconclusive. In fact, once I started treatment this year, four bands started reacting because the spirochetes (Lyme bacteria) were exiting my tissues after being buried there for ten years, flooding my bloodstream and showing up on the Blot. Yet, I still do not pass the CDC’s litmus test.
Because of this, most of my doctors and medications are not covered by insurance. I have spent thousands and thousands of dollars since my fateful and horrifying diagnosis less than a year ago trying to get back on top of things (I say back on top as if I had a life before Lyme and its little sneaky friends, when really I was only a child). Let me be crystal clear; if I was not able to afford this treatment thanks to my family and how we have unfairly benefited from capitalism, I would be dying soon. The bacteria would have continued to eat into my nervous system, brain, and spinal cord. I possibly would have become paralyzed (something I have shockingly avoided so far). My digestion would have continued to fail. I likely would have developed a severe auto-immune disease, of which I am already on the verge. I would not have been able to advance in my career. I probably wouldn’t have been able to live independently anymore, which is already difficult and only possible again thanks to my family’s financial resources. And did you know that if you are on disability insurance and get married, you lose your benefits?
This is why it is just about impossible to be disabled and not support universal healthcare. It is the core of why I am a socialist. It is why, when the CDC and the Biden administration tells us we only need to quarantine for five days after testing positive and acknowledges the standard is changing simply to save the economy because everyone will get COVID eventually anyway, I cry, then laugh, then scream (https://thehill.com/policy/healthcare/587553-cdc-comes-under-fire-for-new-covid-19-guidance). They are making a mockery out of disabled people who, as always, bear the brunt of their negligence, who are stuck without treatment for half of their lives while diseases eat their brains and destroy their futures, who are stuck at home because the public don’t care if they die, who cannot afford the medically-accurate non-covered treatments and die as a result. The CDC ruined my life, then radicalized me, and I am only 23.
Lilian McCarthy (she/they) is a queer and disabled academic living in Dublin, Ireland.