4 distinct post-treatment Lyme disease syndromes?

Man holding head, looking tired from post treatment lyme disease

In a recent editorial, Dr. Allen Steere describes the clinical features and proposed mechanisms triggering what he believes are 4 distinct post-treatment Lyme disease syndromes (PTLDS) in patients who fail antibiotic treatment for Lyme disease. [1]

Individuals who suffer from persistent symptoms may be diagnosed with post-treatment Lyme disease or ‘chronic Lyme disease.’  Studies estimate that between 34% and 62% of patients continue to have ongoing, chronic symptoms even after standard antibiotic therapy. Many remain ill for months to years. In fact, according to one study, 34% of a population-based, retrospective cohort were still ill an average of 6.2 years after antibiotic treatment.

Additionally, four clinical trials, sponsored by the National Institutes of Health (NIH), demonstrated the potential seriousness of Lyme disease. According to the findings, the quality of life for chronically ill patients “was equivalent to that of patients with congestive heart failure; pain levels were similar to those of post-surgical patients and fatigue was on par with that seen in multiple sclerosis.”

In his editorial, “Post-treatment Lyme disease syndromes: distinct pathogenesis caused by maladaptive host responses,” Steere concedes that patients can remain seriously ill. “These patients may have severe pain around joints (tender points), headache, brain fog, sleep disorder, and incapacitating fatigue, which have a major impact on the quality of life.”

“Physicians are often in a quandary regarding whether these patients still have active infection or postinfectious phenomena,” he writes.

Unfortunately, Steere dismisses the hypothesis that a persistent and active infection could be causing ongoing illness in patients with ‘chronic Lyme disease’ or post-treatment Lyme disease syndrome, as he claims, there is a “current lack of evidence of persistent infection or antibiotic efficacy in human patients with PTLDS.” (A statement which I dispute.)

Instead, he has developed and proposes that patients suffer from various post-infectious syndromes, which include:

Post-infectious Lyme arthritis

“Massive inflammatory, synovial proliferation usually affecting a knee, emerging from Lyme arthritis.”

Pathogenesis: Excessive pro-inflammatory immune response with high IFN-γ levels persistent in the post-infectious period, blocking appropriate wound repair processes.

Post-treatment Lyme disease syndrome

“Pain, neurocognitive, and fatigue symptoms emerging after any LD [Lyme disease] manifestation.”

Pathogenesis: Increased sensory signals during infection do not reset appropriately after infection, called ‘central sensitization syndrome.’

Autoimmune joint disease

“Rheumatoid arthritis, psoriatic arthritis, or peripheral spondyloarthropathy emerging after any LD [Lyme disease] manifestation.”

Pathogenesis: Adjuvant effect of infection activating latent autoimmune disease.

Autoimmune neurologic disease

“Chronic idiopathic demyelinating polyneuropathy emerging from Lyme radiculoneuropathy.”

Pathogenesis: Unknown.

Steere points out, that individuals with systemic autoimmune diseases following Lyme disease may benefit from immunosuppressive or anti-inflammatory therapy.

He concludes, “disabling posttreatment syndromes may still develop, which appear to result primarily from disadvantageous or maladaptive host responses to the infection that persist after spirochetal killing with antibiotics.”

Editor’s note: I do not agree with Dr. Steere’s position. And for transparency purposes, I’m an author of the International Lyme and Associated Diseases Society (ILADS) guidelines, which does not dismiss the persistent infection hypothesis but supports ongoing antimicrobial treatment until Lyme disease symptoms resolve.

References:
  1. Steere AC. Posttreatment Lyme disease syndromes: distinct pathogenesis caused by maladaptive host responses. J Clin Invest. 2020;130(5):2148-2151.
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5 Replies to "4 distinct post-treatment Lyme disease syndromes?"

  • Kikiwik
    07/07/2020 (12:44 pm)
    Reply

    Question about the use of “post-treatment” language. Do these syndromes apply only to those who were treated while in acute phase? Or to anyone post-acute? For example, in my case, my bite was confirmed many years after the fact, and I had never had treatment, but certainly have post-acute-stage issues. In other words, are the syndromes above truly related to the typical treatments applied during acute stage, or to the Lyme infection itself?

    • Dr. Daniel Cameron
      07/07/2020 (3:08 pm)
      Reply

      I am not a fan of the term “post-treatment” as some doctors assumed there is no evidence of persistent infection. Some have used the term if symptoms persist after 3 weeks of antibiotics.

      • Kikiwik
        07/07/2020 (5:56 pm)
        Reply

        Ok, are you saying that these 4 syndromes are really post-infection, and not related to the treatment itself? But using the “post-treatment” label out of convenience. What I’m trying to understand is whether these syndromes result from the treatment or result from the infection.

        • Dr. Daniel Cameron
          07/07/2020 (7:40 pm)
          Reply

          They four syndromes are from the infection. The doctor assumes the infection has cleared.

  • Ernestine _
    07/01/2020 (9:36 am)
    Reply

    Everything said is true. I’m sensitive to sounds. My skin is weak. The body is boiling inside from the pain. The knees are so bad. It feel like tones put on my body. The list goes on. 21 days treatment for late stage infection of this kind will not be enough. Result : is hell on earth. (That the life I’m living)


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