Johns Hopkins University: Post Lyme Syndrome is Real

While government agencies like the CDC have to admit that the cases of acute Lyme disease are increasing, we come across a lot of online debate over whether Post Treatment Lyme Disease (PTLD) is real or not. Many of those online opinions are dismissed as not credible for various reasons, but when the mainstream medical world’s leaders acknowledge PTLD asreal, we should take notice. In a post on Johns Hopkins’ own website, we read how their Lyme Disease Research Center offers multiple evidences for PTLD being real, not just a figment of our imaginations.

As the headlines fill with hysteria over Lyme spreading geographically and increasing in prevalence, those in functional, holistic, and integrative medicine are all saying, “I told you so”. To be clear, the media is capitalizing on this public concern not because they care but because they like the attention. However, for those who have suffered what feels like an invisible disease for so long, the recognition is encouraging. Hopefully, the apparent invisibility of acute and chronic cases both will end, leading to earlier, better treatment in both cases.

In the Johns Hopkins article, they offer convincing reasons to believe PTLD is real: objective findings, beyond just subjective symptom reports. This type of evidence is hard to ignore.

In one cited study, Dr. John Aucutt recorded the persistence of symptoms after appropriately treated acute Lyme disease. Despite the standard therapy, 14% of those patients reported ongoing symptoms that impaired daily function. These symptoms included severe fatigue, cognitive issues, and body pain.

In another study, Dr. Cheria Marvel demonstrated MRI changes in PTLD type patients. They used regular and functional MRI’s to show differences in patient’s brains after Lyme disease. They found white matter changes (the part of the brain where connecting axon fibers run between brain cells, in effect the brain’s wiring) which they believe connect to the “brain fog” reported by PTLD patients.

In another study, Brittany Adler et al report on different infections and triggers which can precede a diagnosis of POTS (Postural Orthostatic Tachycardia Syndrome), including Lyme disease. While the article admits that a direct causation has not been established, they urge more research in this area as link between PTLD and POTS seem obvious.

In yet another cited study, Dr. John Miller reported findings of continued joint inflammation in patients who continued to have pain after Lyme disease therapy. Ultrasound readings demonstrated inflammation underlying the pain, which supports the reality of PTLD as the symptom’s origin, even after Lyme therapy is over.

The Hopkins article notes that:

“Our research also shows Lyme disease patients exhibit different microbiome, metabolome, gene regulation and epigenetic patterns, and immune responses compared to healthy controls.”

This leads me to one final and huge question: why are Lyme patients and especially PTLD patients so often dismissed, ignored, and pushed to the side when they are begging for help. If the number of Lyme cases is going up, if even those who are treated “appropriately” with standard of care are experiencing PTLD, if many are not even being treated with standard of care due to missed diagnoses… then why can’t medicine get its act together and care for patients rather than telling them it’s all in their head?

In helping our patients restore the healthier, more abundant life, we take everything seriously. This includes looking for and treating both acute and Post Treatment Lyme disease. Even further, we look for the reasons beyond the infection that contribute to patients’ ongoing symptoms, factors like toxicities, coinfections, and deficiences. As we wait for conventional medicine to listen to its own leading institutions (like Johns Hopkins in the cited article), we see the invisible and care for them daily.

 

Primary Article:

Center, J. H. L. D. R. (2022, March 4). Risk of post-treatment Lyme disease in patients with early diagnosed and promptly treated Lyme disease: A prospective cohort study : Johns Hopkins Lyme Disease Research Center. Johns Hopkins Medicine Lyme Disease Research Center. https://www.hopkinslyme.org/news/risk-of-post-treatment-lyme-disease-in-patients-with-early-diagnosed-and-promptly-treated-lyme-disease-a-prospective-cohort-study/

 

Secondary citations:

Aucott J, Yang T, Yoon I etal. Risk of post-treatment Lyme disease in patients with ideally-treated early Lyme disease: A prospective cohort study. International Journal of Infectious Diseases, 2022; 116, 230-237

Adler, B. L., Chung, T., Rowe, P. C., & Aucott, J. (2024). Dysautonomia following Lyme disease: a key component of post-treatment Lyme disease syndrome?. Frontiers in neurology, 15, 1344862. https://doi.org/10.3389/fneur.2024.1344862

Miller, J. B., Albayda, J., & Aucott, J. N. (2022). The Value of Musculoskeletal Ultrasound for Evaluation of Postinfectious Lyme Arthritis. Journal of clinical rheumatology : practical reports on rheumatic & musculoskeletal diseases, 28(2), e605–e608. https://doi.org/10.1097/RHU.0000000000001732

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Sanctuary Functional Medicine, under the direction of Dr Eric Potter, IFMCP MD, provides functional medicine services to Nashville, Middle Tennessee and beyond. We frequently treat patients from Kentucky, Alabama, Mississippi, Georgia, Ohio, Indiana, and more... offering the hope of healthier more abundant lives to those with chronic illness.