Despite a growing mountain of credible research evidencing persistent Lyme disease infection after antibiotic treatment due to biofilms, immune system evasion, and persister cells, unfortunately, there remains a deep divide in the standard of care for Lyme disease patients who are not better after a few weeks of antibiotics, the one-size-fits-all treatment promoted by the CDC and the Infectious Diseases Society of America (IDSA). Even when patients relapse with precisely the same symptoms, the CDC and IDSA take the position that it is “Post Treatment Lyme Disease Syndrome,” a wastebasket label diagnosis with no treatment options.
In a study published by authors that include Monica Embers and Brian Fallon in 2021, post mortem tissue was examined from an individual who had a well-documented history of Lyme disease that appeared to have been successfully treated with antibiotics; 4 years later the patient developed a neurodegenerative disorder leading to dementia consistent with Lewy body dementia. B. burgdorferi was identified by PCR in several central Nervous system tissues and by immunofluorescent staining in the spinal cord, offering proof of the principle that persistent infection with the Lyme disease spirochete may have lingering consequences on the central nervous system.
The one-size-fits-all IDSA treatment guidelines fail countless patients, particularly those who are not timely diagnosed/treated or present with co-infections such as Babesia, Bartonella, or rickettsial infections. A significant percentage of patients suffer persistent symptoms after antibiotic treatment.
The CDC previously estimated 10-20% of patients, but now they claim, without explanation, “following antibiotic treatment, about 5-10% of people with Lyme disease have prolonged symptoms of fatigue, body aches, or difficulty thinking as a result of their infection.” To the contrary, research demonstrates a higher percentage. See e.g. Post-treatment Lyme disease syndrome symptomatology and the impact on life functioning: is there something here? (at six months, 36% of patients reported new-onset fatigue, 20% widespread pain, and 45% neurocognitive difficulties). It is widely accepted that patients who are not timely diagnosed and treated are more likely to suffer from persistent symptoms after IDSA-recommended treatment.
Studies at Johns Hopkins showed doxycycline failed to eradicate the Lyme bacteria Borrelia burgdorferi in vitro. However, triple antibiotic combinations were effective in a mouse model. See also Superior efficacy of combination antibiotic therapy versus monotherapy in a mouse model of Lyme disease. It is critical to consider that studies showing “long term antibiotics are not effective” used a single antibiotic, did not have a true placebo (i.e. giving IV rocephin to the control group), and/or ignored improvement of symptoms such as fatigue. Studies were designed to fail and then were widely reported without mention of study limitations/flaws.
The failure to timely diagnose and adequately treat Lyme disease comes at a tremendous economic burden. Lyme patients had 87% more visits to the doctor and 71% more visits to the emergency room within the year following diagnosis. This does not take into account additional economic costs due to missed work and long term disability. See Johns Hopkins study Lyme Disease Costs Up to $1.3 Billion Per Year to Treat, Study Finds and Health Care Costs, Utilization and Patterns of Care following Lyme Disease | PLOS ONE; see also The Financial Implications of a Well-Hidden and Ignored Chronic Lyme Disease Pandemic – PMC
See also many more studies compiled below:
• Basic science (mostly) Lyme/Borrelia references referring to chronic or persistent infection/disease.
