The headline caught my attention: CDC now lists Lyme as infection that can cause chronic symptoms. I thought I misread it. I read it again.
I followed the link to a new page on the CDC website titled Chronic Symptoms Following Infections. It noted:
I scoffed at this paragraph and said aloud to no one, “Really, it took decades to acknowledge this?
If you’re a patient with Chronic Lyme, it’s really hard to understand why this is a revelation to the CDC, but I kept reading with an open mind, hopeful for something more.
Next on the CDC page:
Some disease agents that have been linked to chronic symptoms include:
Borrelia burgdorferi (bacteria causing Lyme disease)
Coxiella burnetii (bacteria causing Q fever)
Again, old news. I continued reading.
Next, they list the chronic symptoms that can result from these infections.
I don’t even need to read them. I can write the list myself.
Why did I think this time would be any different?
Was I supposed to celebrate this weak attempt at correcting decades of wrongs?
My mind began to race. My face became warm. I flashed back to some of the worst moments of the past 25 years.
It’s 1998, and I’m sitting in an office, hours from home, struggling to sit upright, listening to another specialist tell me there’s nothing wrong with me. I look fine.
Conversations replay in my mind…
“Your son was treated for Lyme. It can’t be Lyme causing these symptoms. It must be stress”
Like watching an old movie, the frames slow, and the picture becomes blurry.
Despite my ability to stay present and be mindful in difficult situations, when it comes to the devastation caused by Lyme disease and the systemic wrongs of the medical community, it’s hard to stay calm and focused.
Why does a new page on the CDC website matter?
It matters because, for years, the CDC and others in the medical establishment refused to acknowledge that Lyme disease could become chronic. They ignored new scientific evidence that revealed the infection persists.
They also openly endorsed the IDSA Lyme treatment guidelines, which flatly denied that chronic Lyme exists. When the CDC removed the link to the IDSA guidelines on their website, there was no announcement about the change and little support from the medical community.
So, the acknowledgment by the CDC that infections such as Lyme disease can cause chronic symptoms and worsening health conditions is a cause for celebration, even if how it was done left much to be desired.
When misinformation becomes the norm, the path to the truth is painstakingly slow.
For the next few days, I looked for news of this update across various media outlets. It wasn’t reported in the local newspaper, on CNN, Fox, MSNBC, or NPR. It was nowhere to be found.
Not surprising.
I spent years in public relations. When a scientific breakthrough is made, it’s pretty easy to get that news into media outlets’ hands and disseminate it to the public.
So why wasn’t this news being reported?
Because it was done quietly and without fanfare.
The only outlets that discovered and reported it were associated with the Lyme community.
The community that’s been patiently waiting for change.
The community that’s been waiting for clinicians to acknowledge their condition, waiting for new research to be funded, and for treatments to be developed.
The children and families waiting for their lives to be repaired.
I was disheartened by the lack of attention but reminded that unless you are personally affected by something, you tend not to notice it. It’s human nature.
Then, this past week, while catching up on the many Substacks I follow, I saw the mention of Lyme in a headline. Was another publication covering the CDC change?
I began reading but realized it was not what I hoped. It was a post about a Lyme vaccine.
I took several deep breaths.
In the Lyme community, it’s widely believed that a Lyme vaccine is NOT the solution to the growing problem of Lyme disease. Instead, a Lyme vaccine is the purported solution from the pharmaceutical industry because of its positive effect on its bottom line, not its positive impact on stopping or curing Lyme.
I took a few more deep breaths. I tried to remember that for those not in the Lyme community, it’s hard to know the history, background, and politics of Lyme disease.
I reasoned that the author was probably unaware of the disastrous result of the first Lyme vaccine: the number of people it injured and the reasons it was quickly removed from the market.
I reminded myself that she was probably unaware that ticks carry many types of bacterial infections in addition to Lyme and many species of Borrelia. Even if a Lyme vaccine were to protect against Borrelia Burgdoferi, how would you protect against the dozens of others?
I appreciated that the author noted that Lyme is at the root of one of the most passionate and aggressive debates in chronic disease. She also stated that she thinks Chronic Lyme exists. But by focusing on the Lyme vaccine rather than new research or treatment advancements, she missed an opportunity to educate her readers on a topic that needs more honest attention.
I finished reading and began to compose a response. I responded because when your life has been forever altered by a disease and the misinformation espoused by the medical community, it’s impossible to ignore anything that may perpetuate the problem or leave the public unaware.
I was in the car with my son, traveling to yet another Lyme specialist out of state.
My thoughts wandered.
Would the truth about Lyme ever be fully revealed and acknowledged?
Would the millions suffering find true healing?
Would I see real change in my lifetime?
Would those responsible for the false narratives be held accountable?
It pains me to say I don’t have the answers, but I do remain hopeful.
How do I stay focused, calm, and optimistic about the future when things don’t seem to change?
I rely on my adversity toolkit: acceptance, resilience, perseverance, faith, a growth mindset, a mindfulness and gratitude practice, and the belief that change is possible, even if it’s painstakingly slow. I also cling to the glimmers of light that appear now and then. The changes to the CDC website could have been so much more, but I’ll accept it for what it is- progress- and wait for more to come.
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My Mess Is My Message II is coming soon!
I’m so excited to be a part of this multi-author book project, which will be published in December and available on Amazon! Look for more details coming soon.
If you’d like to join a list to pre-order the book, leave a comment, and I’ll be sure you’re added.
Until next week, be mindful and stay safe.
The first edition of The Power of Change was published on October 8, 2022.
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'Nevertheless, she/we persist."
Thanks for sharing your strength and continuing story.
Cheers, Nancy
Thank you for sharing your toolkit with us. It applies to many situations. I hope in your lifetime many more advances will be made to combat this disease.