One of the most frustrating things about Lyme disease is that it can linger long after conventional (antibiotic) medical treatment occurs—in some cases people suffer its effects for the rest of their lives, despite largely normal physical exams and laboratory analyses. This is called Post Treatment Lyme Disease Syndrome (PTLDS), a diagnosis, which until quite recently, was very controversial, but has now been recognized and adopted by the larger medical community. 

Let’s take a look a little at what PTLDS is, why it occurs, and the latest research.

What is PTLDS?

As mentioned above, PTLDS is Post Treatment Lyme Disease Syndrome. It refers to a specific set of symptoms that linger after a patient has sought and received traditional (antibiotic) medical treatment for Lyme disease. The Infectious Diseases Society of America defines PTLDS as the development of significant fatigue, widespread musculoskeletal pain, and/or cognitive difficulties such as depression, insomnia, and difficulty thinking that arise within six months after completion of antibiotic therapy for physician-documented Lyme disease and that last for at least six months. These symptoms can last for months to years after treatment, and they occur even when lab tests and physical exams come back relatively normal. Dr. John Aucott of Johns Hopkins University School of Medicine put it like this, “Post-treatment Lyme disease syndrome (PTLDS) is a real disorder that causes severe symptoms in the absence of clinically detectable infection.”  

Previous efforts to study and understand PTLDS have been fruitless because the medical community lumped together any Lyme disease case that lingered after treatment under the umbrella term “chronic Lyme”. While the term ‘chronic Lyme disease’ or CLD is commonly used by patient advocacy groups, researchers, and patients, the CDC and National Institutes of Health don’t support the use of the term.

“The International Lyme and Associated Diseases Society (ILADS) provides an evidence-based definition of chronic Lyme disease. Definition: ILADS defines chronic Lyme disease (CLD) as a multisystem illness with a wide range of symptoms and/or signs that are either continuously or intermittently present for a minimum of six months. The illness is the result of an active and ongoing infection by any of several pathogenic members of the Borrelia burgdorferi sensu lato complex (Bbsl). The infection has variable latency periods and signs and symptoms may wax, wane and migrate. CLD has two subcategories, CLD, untreated (CLD-U) and CLD, previously treated (CLD-PT). The latter requires that CLD manifestations persist or recur following treatment and are present continuously or in a relapsing/remitting pattern for a duration of six months or more.”

A 2018 Johns Hopkins study made headway in establishing PTLDS because they only studied Lyme disease patients with a specific and narrow range of symptoms and excluded patients with symptoms that mimicked PTLDS.

Whether you label it PTLDS or CLD, these symptoms are real. There are cases that may not fit neatly into the PTLDS category such as Lyme positive patients who were never treated and positive Lyme patients who relapsed months or years after acute phase treatment.

Why Does it Occur?

Some research suggests that PTLDS occurs when there is a neurological component to the initial infection. PTLDS “patients may experience pain, neurocognitive, or fatigue symptoms, emerging during or within several months after antibiotic treatment of the infection, lasting months or years. 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.” This is just one hypothesis. Exactly why PTLDS occurs is not completely understood. “One hypothesis is that in patients with PTLDS the enhanced sensory signals during the infection do not reset after infection, and the increased sensitivity to pain, brain fog, and marked fatigue persist, called a ‘central sensitization syndrome.’”

Another cause for PTLDS symptoms could be chronic encephalopathy produced by Borrelia burgdorferi either by its persistence in the bloodstream, cerebrospinal fluid and tissues due to resistance to treatment, under the well-known mechanism of “Biofilm“.

• Generation of neurological damage due to the persistence of Borrelia burgdorferi in tissues that do not regenerate, such as the nerve cells.
• An inflammatory process that remained in the nervous system and tissues after eliminating the causative agent.
• In some patients, the coexistence of other diseases such as Ehrlichiosis, Babesiosis and Bartonellosis, which worsen the symptoms and obstruct the treatment.

The Johns Hopkins study notes that risk factors that increase the likelihood of a patient developing and suffering from PTLDS is delayed diagnosis (perhaps due to lack of effective diagnostic tests) and exposure to inappropriate treatments with antibiotics and steroids. Misdiagnosis can also delay treatment.  

Conclusions

Although the cause of PTLDS still remains unclear, what is clear is that PTLDS is characterized by a specific set of symptoms that sets it apart from other Lyme disease and tick borne infection sufferers. “‘Even though their exams and lab tests didn’t show much in the way of a common or clear biological marker or markers of PTLDS, it’s clear these patients don’t feel well,’ says study co-author Kathleen Bechtold, Ph.D., associate professor of physical medicine and rehabilitation at the Johns Hopkins University School of Medicine. ‘These symptoms are more severe than what the average non-PTLDS patient is experiencing even on a bad day.’ The findings show distinct differences between PTLDS and the normal aches and pains of daily life, Bechtold adds. Even with no objective laboratory or exam markers, she says, the results of this study suggest that PTLDS can be diagnosed through careful and thorough examination of symptoms.”

Now, finally, the medical community is catching up to what those of us who have suffered from PTLDS and battled Lyme disease have known for a very long time—this is a very real, very painful, and debilitating condition. But, being acknowledged by the larger medical community as a whole is a positive step in the right direction. Acknowledgement and better categorization of Lyme disease conditions and co-infections may mean that more funding, research, and attention will be shed on this debilitating category of diseases.  Perhaps most importantly of all for Lyme disease and PTLDS sufferers will be the recognition from the medical community, friends, and family that their experiences and pain is REAL.

If you or someone you know is suffering from Lyme disease, PTLDS, or other tick borne disease and Lyme co-infections there is HELP. Lyme Support is devoted to helping Lyme disease sufferers like you regain their health and wellness through holistic Lyme protocols and a functional medicine approach. For more information contact us. 

 References

Hedin, M. (2018, February 1). Study Shows Evidence of Severe and Lingering Symptoms in Some after Treatment for Lyme Disease. Hopkinsmedicine.Org. https://www.hopkinsmedicine.org/news/newsroom/news-releases/study-shows-evidence-of-severe-and-lingering-symptoms-in-some-after-treatment-for-lyme-disease

Lapenta, J., et al. The Post-Lyme Disease Treatment Syndrome (PTLDS) A Review of its Origin and its­­­­­­­­­­ Consequences in the Socio-Economic Sphere (2019) Invest Dermatol Venereol Res 5(1): 1- 6.

Shor, S., Green, C., Szantyr, B., Phillips, S., Liegner, K., Burrascano, J., … Maloney, E. L. (2019). Chronic Lyme Disease: An Evidence-Based Definition by the ILADS Working Group. Antibiotics, 8(4), 269. doi:10.3390/antibiotics8040269

Steere, A. (2020, April 13). Posttreatment Lyme disease syndromes: distinct pathogenesis caused by maladaptive host responses. The Journal of Clinical Investigation. https://www.jci.org/articles/view/138062