Four Proposed Post-Treatment Lyme Disease Syndromes Causing Persistent Symptoms
Post-treatment Lyme disease syndromes describe persistent symptoms that continue after standard antibiotic therapy for Lyme disease. Although many patients recover, a significant number remain ill for months or even years.
Individuals who suffer from persistent symptoms are often diagnosed with post-treatment Lyme disease syndrome (PTLDS) or what some patients describe as chronic Lyme disease. Studies estimate that between 34% and 62% of patients continue to experience ongoing symptoms even after standard antibiotic therapy.
Many patients remain ill for years. In fact, one population-based retrospective cohort study found that 34% of patients were still symptomatic an average of 6.2 years after antibiotic treatment.
Additionally, four clinical trials sponsored by the National Institutes of Health (NIH) highlighted the significant burden of persistent Lyme disease symptoms. According to the findings, quality of life in chronically ill Lyme 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.”
Four proposed post-treatment Lyme disease syndromes
In his editorial, “Post-treatment Lyme disease syndromes: distinct pathogenesis caused by maladaptive host responses,” Dr. Allen Steere acknowledges that patients can remain seriously ill after Lyme disease.
“These patients may have severe pain around joints (tender points), headache, brain fog, sleep disorder, and incapacitating fatigue, which have a major impact on quality of life,” Steere writes.
He notes that physicians often face uncertainty when evaluating these patients:
“Physicians are often in a quandary regarding whether these patients still have active infection or postinfectious phenomena.”
However, Steere dismisses the possibility that persistent infection may explain ongoing illness, stating that there is currently a “lack of evidence of persistent infection or antibiotic efficacy in human patients with PTLDS.” (A statement I dispute.)
Instead, he proposes that patients with persistent symptoms may fall into four distinct post-treatment Lyme disease syndromes driven by post-infectious immune responses.
1. Post-infectious Lyme arthritis
Post-infectious Lyme arthritis involves massive inflammatory synovial proliferation, typically affecting a knee and emerging after Lyme arthritis.
Proposed pathogenesis:
An excessive pro-inflammatory immune response with persistent high levels of interferon gamma (IFN-γ), which may interfere with normal tissue repair processes.
2. Post-treatment Lyme disease syndrome (PTLDS)
This syndrome includes persistent pain, fatigue, and neurocognitive symptoms following any manifestation of Lyme disease.
Proposed pathogenesis:
Steere proposes that sensory signaling during infection may not reset appropriately after treatment, leading to central sensitization syndrome.
3. Autoimmune joint disease
Some patients may develop autoimmune conditions such as rheumatoid arthritis, psoriatic arthritis, or peripheral spondyloarthropathy following Lyme disease.
Proposed pathogenesis:
Steere suggests that infection may act as an immune “adjuvant,” activating a previously silent autoimmune disorder.
4. Autoimmune neurologic disease
Steere also proposes that autoimmune neurologic conditions, such as chronic inflammatory demyelinating polyneuropathy (CIDP), may develop following Lyme radiculoneuropathy.
Proposed pathogenesis:
The mechanism remains uncertain.
Ongoing debate about persistent Lyme disease
Steere suggests that patients who develop autoimmune disease following Lyme infection may benefit from immunosuppressive or anti-inflammatory therapy.
He concludes that disabling post-treatment Lyme disease syndromes likely result from maladaptive host responses that persist after antibiotic treatment eliminates the infection.
Editor’s note: I disagree with Dr. Steere’s position. For transparency, I am an author of the International Lyme and Associated Diseases Society (ILADS) treatment guidelines. ILADS guidelines do not dismiss the possibility of persistent infection and support individualized antimicrobial treatment until Lyme disease symptoms resolve.
Related Articles
Case report: Persistent pain and fatigue following treatment for Lyme disease
Borrelia spirochetes are masters at evading the immune system
References
- Steere AC. Posttreatment Lyme disease syndromes: distinct pathogenesis caused by maladaptive host responses. J Clin Invest. 2020;130(5):2148-2151.
Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.
Symptoms • Testing • Coinfections • Recovery • Pediatric • Prevention
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?
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.
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.
They four syndromes are from the infection. The doctor assumes the infection has cleared.
I have had lyme doxi treatment numerous times over last few years. I now have a painful 2.5 cm lump in a groin lymph node. The lyme test shows prior lyme infections. Have you seen lymphoma from lyme after treatment? My primary thinks I push a lyme diagnosis too much as the root cause of fibromyalgia and brain fog.
I have not seen Lymphoma after treatment for Lyme disease. You need to see a doctor, i.e. surgeon or oncologist for an evaluation. I have patients with both Lyme disease and cancer. I have had to treat their Lyme disease along with their oncologist. Call my office at 914 666 4665 if you have any questions.
Does your pcp have any other ideas .. what’s wrong with treating your symptoms … just don’t bundle everything into one diagnosis because those words, chronic Lyme can bring a shit storm down on the the pcp’s head … I have the same issues as you do plus post sepsis syndrome which gets the same treatment .. they seem more open to post Covid symptoms which appear to be similar to both post Lyme and post sepsis .. they all three share massive inflammation as a common thread .. perhaps the post Covid issues will drive research that could help us all
Dr Cameron, in addition to (or apart from) borrelia/lyme infections, have you found other bacteria to be “persistent” such as Tularemia, Bartonella, Brucella and Babesia? Thank you sir,
I am not sure any one has looked at other infections.
The doc I’m seeing to treat Lyme put me on clarithromycin and cefuroxime twice a day . No length of treatment but provided 30 day supply with 1 refill. Unable to call MD to ask if I take it 30 or 60 days. Any thoughts? His office reopens 1/4/2021
1/4/21 is nearly here. I would typically extend therapy few a days until I could make an appointment for a reassessment. I cannot comment on your treatment.
Using a 2014 study to support his theory with 36 patients and one-third of them being his control group? Most others references were all based on his lunacy. I get so angry thinking anyone pays attention to the likes of this “Physician”. I was diagnosed 20 years ago in Ct. Although I was treated well by some of the best ILADS Doctors- I am living proof That Chronic LD exists. Ten years of remission and poof- gone in a minute! There was little or no testing for co-infections back then although I was treated for two of them for a while. Treatment options are near impossible having moved to a Southern State that denies LD exists here. Thank you for all your work Dr. Cameron. he best I can offer is to educate others so they learn and seek treatment soon!