LDA President’s Blog – New CDC Webpage. Help for Patients?

Pat Smith, President

New CDC Webpage. Help for Patients?

After 39 years as a Lyme educator and advocate, I’ve become immune to the fact that the status quo with Lyme rarely alters, and if it does, it does not often make a dent in the lives of patients.  I had hoped that the new webpage placed on the CDC website the last week of October 2023, would change that.

HISTORY OF GOVERNMENT CHRONIC LYME DENIAL The new CDC webpage was not a surprise to me, as I had several discussions with CDC over the past few years about finding compromises in language for the CDC website. The CDC has made changes to its overall website so that it does not appear to openly endorse the IDSA guidelines─ somewhat of a compromise. However, it still uses the recommendations from the IDSA Guidelines on Lyme as its basic treatment plan, just without the use of the IDSA name.  It cites peer reviewed publications which support those recommendations.

How to overcome reliance on IDSA guidelines without “disowning” the recommendations for treatment has been problematic for the government. Discussions many of us have had with the government, have centered on the use of “chronic Lyme disease,” – problematic for the government defending that terminology under the existing Lyme environment which includes research it chooses to ignore. That is, acknowledging that chronic Lyme exists, although the science around the etiology of chronic disease remains unsettled. Thus CDC, NIH, IDSA, and mainstream medicine continue to deny “chronic Lyme” and do not recognize the right of patients to be treated when physicians and patients make an informed shared decision to extend treatment protocols for chronic Lyme disease. 

During the first four years when I was a member of the HHS Tick-Borne Diseases Working Group in DC, we the advocates and government reps were able to make certain language compromises identifying patients with “chronic Lyme” for reports to Congress, by using such terms like “patients with long term symptoms after Lyme treatment,” or other phraseology.  This was a small step in a positive direction for advocates. 

COVID INFLUENCE ON ATTITUDES After my stint on the WG, I understood that the CDC was working on a different type of webpage which would broaden the Lyme topic to diseases which have long-term or chronic symptoms. Some of this shift no doubt originates with COVID, when so many individuals were so sick and presented as “long-haulers,” an interesting though generic term which does not necessarily mean/doesn’t mean someone continues to have the disease.  The ability to explain the “long haul” aspect of COVID and the decades of explaining “chronic” for Lyme suddenly were linked, almost as if the long-term suffering of COVID patients gave validity, finally, to decades-long suffering Lyme patients. Both groups have suffered horribly, sometimes from both diseases. 

New CDC Webpage Titled Chronic Symptoms Following Infections:

  • The webpage opens by providing a bulleted list of 6 chronic symptoms. 
  • The next section Some Disease Agents that have been Linked to Chronic Symptoms is a bulleted list of 11 disease agents that have been linked to chronic symptoms, of which Borrelia burgdorferi is listed first.
  • The section titled Causes of Chronic Symptoms Following Infections consists of a paragraph suggesting why there might be chronic symptoms “after an infection,” all of which refers to immune and autoimmune inflammatory responses, damage to nervous system, changes to microbiome, and damage to the body’s ability to produce energy from food. I did not see mentioned anywhere the possibility of continued infection, not even as a NOTE. 
  • The Effects of Chronic Symptoms Following Infections section discusses type, duration, and intensity of chronic symptoms following an infection.
  •  Addressing Chronic Symptoms with a Healthcare Provider section provides various suggestions such as the provider will perform a thorough evaluation that might include a physical exam and testing to help them consider or rule-out possible causes of the symptoms. Often test results are normal, and the cause of symptoms remains unexplained. 

I would have been more encouraged if that above scenario wasn’t one in Lyme disease that too often occurs due to the lack of a gold standard test, and due to physicians too often afraid to exercise clinical judgment due to IDSA guidelines and government in concurrence with them. Plus, it does not specifically say anywhere on the new webpage that perhaps these chronic symptoms are not the effects after an infection, but the effects of a continuing infection whose symptoms doctors do not recognize or do not want to recognize.  

  • The Treatment for Chronic Symptoms Following Infections section states, “In many cases, there are no specific treatments or cures for chronic symptoms following an infection. There are, however, steps you can take to reduce the impact these symptoms have on your life… More information on how to treat chronic symptoms following a specific infection may be available at the above disease agent links.”   

I clicked on the Borrelia burgdorferi disease agent link which led me to an article titled Post Treatment Lyme Disease Syndrome, Perhaps the only value in it for those Lyme patients with long term symptoms after treatment appears as one sentence in paragraph 2, if anyone read that far, about why some patients experience PTLDS.  That term is a research construct, by the way, which the article does not mention. The one sentence states, “Other experts hypothesize that PTLDS results from a persistent but difficult to detect infection.”  One sentence that could possibly even help patients, lost in the total 14 sentences of the article–a proverbial needle in the haystack.

If someone goes further and reads the titles of the 8 bulleted journal articles below the PTLDS article, it is quite easy to determine that all articles are not only biased against long term Lyme patients getting help but scaring them to death in the process of even thinking about it.  Please read exact titles and authors and publications on CDC webpage/disease agent link/Borrelia burgdorferi for yourself, but I have provided shortened titles below to give you a sense of what I mean:

  • Self diagnosis of Lyme caused death in woman with SLE
  • Adverse events with antibiotics and IV therapies for PTLD
  • Serious bacterial infections acquired during treatment of patients given chronic Lyme diagnosis
  • Life threatening complication of antibiotic treatment of “chronic Lyme disease”
  • Antibiotic treatment for chronic Lyme disease say no to DRESS
  • Unorthodox alternatives therapies marketed to treat Lyme
  • Death due to C. diff in woman receiving prolonged therapy of suspected Lyme
  • Death from inappropriate therapy for Lyme.

So, does this new CDC webpage help patients with chronic Lyme? You need to decide for yourself after reviewing the new webpage. Sadly, my analysis leads me to conclude, NO. The CDC webpage could become helpful if Lyme community input is sought, incorporated, and adopted. We can hope that will happen.