Chronic Lyme & the CDC

November 3, 2023

https://www.globallymealliance.org/blog/chronic-lyme-is-getting-more-validation?

Chronic Lyme is Getting More Validation

byJennifer Crystal October 23, 2023

The narrative around chronic Lyme disease is shifting, bringing more validation to those who have been battling for recognition of their illness. Despite the progress, there is still work to be done.

The narrative around chronic Lyme disease is shifting. If you have chronic Lyme, you might read that sentence and roll your eyes. I understand if you do. For decades, Lyme warriors have been battling doctors, friends, family members, insurance companies, and the government for validation of their illness. For validation of themselves.

Yes, of themselves. Chronic Lyme is not, in fact, an identity, as was erroneously and hurtfully purported in a 2019 New York Magazine “The Cut” article that made the rounds again this summer. As I explain in my recent “What it Means to Live with Chronic Lyme Disease” blog post, chronic Lyme is a clinical diagnosis of persistent Lyme disease symptoms that must be made by a medical doctor. It is not a diagnosis of exclusion, a chosen diagnosis, or a chosen identity. No one wants to be a Lyme warrior, but when they’ve been sick for months or years due to delayed diagnosed, complications with co-infections, immune dysregulation, treatment-resistant infection, or other factors, Lyme disease does become part of their identity. Thus, when their illness is denied, it feels like part of themselves is denied.

I continued to sometimes wrestle this denial even after I found Lyme literate doctors, my friends and family became Lyme literate, and I twice achieved remission. I still had to fight for validation from insurance companies, new doctors, and, often, the general public, whose narrative about Lyme had trickled down from what they heard from the government or in the news. Chronic Lyme was still a contentious term, one that I had to be careful to avoid depending on my audience. In articles, the term was often written in quotation marks, suggesting that it wasn’t real. Articles like the one in “The Cut” and others debated the veracity of the illness.

This was a reality for so long that many people don’t realize is changing. I was upset when “The Cut” article got shared on social media again this summer, because it’s old, fake news. In 2023, chronic Lyme hasn’t fully gained the acceptance the Lyme community would like, but the needle is absolutely shifting.

Take, for example, the recent Boston Globe article “Chronic Lyme Disease Research Gets Big Boost.” The title alone is cause for celebration, especially from a publication that has previously run articles questioning chronic Lyme or using alternate terms for it. (In fact, my first big Lyme-related publication was an op-ed in response to a Boston Globe piece almost a decade ago). In “Chronic Lyme Get a Big Boost,” the word chronic is not in quotation marks. It’s just stated as a name of a disease that desperately needs—and is finally getting—research attention. The article goes on not to question chronic Lyme, but to discuss its possible causes, which are being studied by the NIH.

While the article does loop chronic Lyme patients under the Post Treatment Lyme Disease umbrella—when the inverse is actually true—it doesn’t use the PTLD term exclusively, but instead uses liberally and without question the terms chronic Lyme and long Lyme. The article quotes, “In announcing the new grants, the NIH said it hopes that broadening scientific understanding of what causes chronic Lyme might help researchers decipher similar mysteries with other infection-associated chronic illnesses, like long COVID and myalgic encephalomyelitis, formerly known as chronic fatigue syndrome.” Thanks to long COVID, other long-haul illnesses like chronic Lyme are finally getting the attention and validation they’ve needed for too long.

A big part of the chronic Lyme debate has always been whether Lyme can cause persistent infection following a short course of treatment. Over the years, we’ve watched the science catch up to the lived experience of chronic Lyme infection. And while we haven’t heard a definitive “chronic Lyme is caused by chronic infection” from important stakeholders, we are hearing that infection is one of the possible causes of chronic Lyme, and that researchers are studying other causes like altered neural pathways, immune dysregulation and chronic inflammation.

To me, there are two important shifts here: the first is that chronic infection is being accepted as a legitimate cause of persistent symptoms. The second is that the other options are not necessarily being considered instead of persistent infection—when for years the pat line was, “chronic Lyme infection doesn’t exist, so it must be something else”—but possibly in addition to infection. In other words, the causes of chronic Lyme disease are probably not mutually exclusive.

This is evident in the updated wording on the CDC website, which says, “The state of the science related to the persistent symptoms associated with Lyme disease is limited, emerging, and unsettled. Additional research is needed to better understand how to treat, manage, and support people with persistent symptoms associated with Lyme disease.” While the CDC isn’t using the term chronic Lyme, they are validating the experience as well as the need for better research to understand it. Again, the needle is moving in the right direction.

With Lyme treatment and recovery, everything happens in baby steps (sometimes forward and sometimes backwards). We want to get immediately better, but when you’ve been sick for a long time, there isn’t a quick fix. We appreciate little progress as we work towards a larger goal of wellness. When it comes to validation of chronic Lyme disease, I similarly appreciate the progress that is being made, knowing there is still distance to be covered. I believe we Lyme warriors have reason to hope.

***

Writer
By Jennifer Crystal

https://www.globallymealliance.org/news/the-long-shadow-of-lyme-infection-cdc-update-sparks-new-conversation

Chronic and Persistent Lyme Symptoms: CDC Update Underscores Progress

by Global Lyme Alliance on October 30, 2023

The CDC’s update on Lyme infections is a shift in tone on the long-lasting symptoms and challenges faced by individuals. As acceptance of ‘long COVID’ and the concept of persistent illnesses grows in familiarity, the CDC’s update on Lyme disease is no exception.

In the evolving landscape of post-infection ailments, the CDC’s recent update delves into persistent symptoms following Lyme infections. This exploration underscores a crucial reality: infections can cast a long shadow, leaving individuals with enduring symptoms that debunk conventional CDC timelines, persisting for weeks, months, or even longer, despite what is deemed ‘appropriate’ treatment.

The CDC’s goes on to list disease agents or co-infections associated with chronic symptoms, including Borrelia burgdorferi, Campylobacter, Chikungunya virus, Coxiella burnetii, Dengue virus, Ebola virus, Epstein Barr virus, Enterovirus, Poliovirus, SARS-CoV-2 (COVID-19), and West Nile virus. What’s striking is the challenge faced by many: identifying the specific infection triggering these persistent symptoms. For some, the initial infection might have gone unnoticed, leading to a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome.

This update holds broader significance. For years, the medical community, including the CDC, resisted acknowledging the chronic nature of Lyme disease. Even after distancing itself from the IDSA Lyme treatment guidelines, which denied the existence of chronic Lyme, the CDC remained cautious in recognizing persistent Lyme symptoms. However, the arrival of COVID-19 shifted the paradigm dramatically.

The pandemic brought forth a wave of ‘long COVID’ cases, characterized by symptoms like debilitating fatigue and cognitive fog—symptoms strikingly similar to those endured by individuals with persistent Lyme disease, ME/CFS, and other chronic conditions. A 2022 CDC survey revealed the staggering scale of long COVID’s impact: nearly 18 million Americans wrestled with it since the pandemic began, with almost 9 million still affected at the time of the survey.

Perhaps ‘long COVID’ forced the hand of the CDC to shift its language around Lyme disease.  Nevertheless, this is not an admission of chronic Lyme, but it is an acknowledgement of chronic illness and symptoms that interplay with a Lyme diagnosis. This update underscores progress, acknowledging the enduring impact of infections. Yet, it serves as a stark reminder of the long road ahead in the fight for recognition and understanding of chronic Lyme disease. While the CDC’s step towards recognizing persistent symptoms is notable, the battle for acknowledging and addressing chronic Lyme disease at the CDC is far from over.

To see the updated webpage on the CDC’s website, click here

_____________

**Comment**

I do not share the same optimism as the authors of these articles, and I write about my reasons in the comment section of this article.

In short, the CDC is such an abject, conflict riddled organization that abandoned science so long ago, it should be completely disbanded.  Any statements it makes should not only be taken with a grain of salt – you should do the exact opposite.

If their brazen, continued illegal handling of COVID didn’t prove this, nothing will.

This institutionally biased agency has manipulated, ignored, and hidden data for its own purposes, insists upon using its own faulty tests, cherry picks and destroys inconvenient data, owns patents on virtually every aspect of disease, and actually purchased, monitored, and used your cell phone data.  Source

For some reason people still want to believe in this evil agency when it has done nothing to help patients.  And when I say nothing, I mean nothing. In fact, it has been the direct cause of patient suffering for over 40 years.  Did you know it began in 1798 as the Marine Hospital Service (MHS) which then morphed into the Public Health Service (PHS) in 1902 that sprayed for mosquitoes with DDT during WWII.  What started as 400 employees mushroomed to 15-16 thousand.  Did you know that it was behind the Tuskagee Experiment before changing its name to the Communicable Disease Center (CDC) which then became the Centers for Disease Control (CDC)?  The agency’s initial focus was on tropical and subtropical diseases.

Did you know it is not a true government agency due to vast amounts of private funding it funnels through the CDC Foundation?
No matter how many times this agency changes its name, it remains the same evil, corrupt agency.

I also question the entire premise of “Long-COVID.”  Until the “vaccinated” are separated from the unvaccinated – nobody will ever get a true picture of anything.  “Long-COVID” could very well be a bait and switch to distract from all the adverse reactions from the gene therapy injections that are riddled with so many problems it’s hard to keep up with them all.  ‘The powers that be’ definitely need a scape-goat and “Long-COVID” fits the bill perfectly.

I’m so done with the CDC and you should be too.  

Category:

Activism, Lyme, Viruses

Comments Off on Chronic Lyme & the CDC