Post-Treatment Lyme Disease Syndrome

Lyme disease is becoming a more prominent and talked about issue, and for good reason. As the years progress, emerging strains of Lyme disease-causing bacteria are being discovered. This leads to a higher risk of encountering and developing the illness. When caught in the infection’s earlier stages, patients tend to respond well to antibiotic treatments such as doxycycline, amoxicillin, and cefuroxime.

However, not everyone is lucky enough to remove the tick before the 36–48 hour transmission period. In fact, nymphs (immature ticks) often go undetected as they can be smaller than a pinhead. In these unfortunate cases, long-term Lyme disease may become a higher possibility.

“An estimated 300,000 people in the U.S. are diagnosed each year with Lyme disease, according to the Centers for Disease Control and Prevention. Of those ideally diagnosed and treated, studies have reported a wide range (5 to 30 percent) of the proportion that goes on to experience post-treatment Lyme disease syndrome (PTLDS).”1

Climate change is a large reason as to why there are increasing tick populations and ticks found in non-endemic areas. More animals are migrating to places where climates better support their life cycles. Ticks hitch rides onto these animals and get a free and easy trip to any destination they want. This can create populations of ticks that learn to adapt to hotter or colder climates. In return, this creates a more wide spread issue for people that enjoy nature.

Symptoms of PTLDS include but are not limited to:

Arthritis, fatigue, headaches, short-term memory issues, numbness, Bells’ Palsy (facial drooping), heart issues (beating too fast or too slowly, and depression.

Treatment for PTLDS is often very difficult for physicians, considering there is a great debate on whether there is an active infection or not. There are multiple syndromes that fall under the umbrella of the post effects of having Lyme disease. They include:

Post-infectious Lyme arthritis, post-treatment LD syndrome, autoimmune joint disease, and autoimmune neurological disease.

Antibiotics are the main treatments that we currently use in the medical field to combat the lingering effects of the illness. However, in a lot of cases, patients stop responding to the oral antibiotics and intravenously administering (IV) them comes into play.

“Depending on the disease manifestation, the infection can usually be treated successfully with 2–4 weeks of oral antibiotic therapy. However, arthritis, a late disease manifestation, can be more difficult to treat. We start with oral antibiotic therapy, usually doxycycline, for 30 days. If patients have minimal or no response, we treat with IV antibiotics, usually ceftriaxone, for another month, and in most patients, the arthritis improves. One theory to explain this finding is that tendons, a relatively avascular niche in and around affected joints, may be infected, and better tissue penetration with IV antibiotics is necessary for successful treatment.”2

There is a debate on whether this is beneficial considering the amount of antibiotic resistance we are experiencing in the modern age. The debate goes even further as some physicians and health boards believe the symptoms might be psychological or in response to another undiagnosed illness, which is why traditional antibiotic treatments don’t always show significant improvements for those patients affected.

Lyme disease is often referred to as, “The Great Imitator,” so physicians misdiagnosing complex sets of symptoms as Lyme disease is possible. Borrelia burgdorferi, is able to undergo morphological changes from a mobile spirochete to a non-mobile sphere. This could be one explanation as to why PTLDS patients test negative for the disease even though they exhibit obvious symptoms.

“The spheres, which appear to be more resistant to unfavorable conditions and exhibit reduced immune reactivity when compared to spirochetes, might allow the B. burgdorferi to escape complete clearance and possibly ensure long-term survival in the host.”3

There are numerous reasons why some people experience PTLDS. One theory states that Lyme disease causes residual damage to tissues and nerves. Even when an active infection has cleared up with antibiotics it can take very long for those nerves to heal back to their original states. Another theory explains how our bodies have a strong auto-immune response to the bacteria. This can cause the body to continually attack healthy cells months after the onset of an infection.

One thing people are often oblivious to is that when they are bitten by a tick and are diagnosed with Lyme disease they could have a co-infection. Co-infections can be very complicated to treat, especially if your physician is unaware you are suffering from one. It’s important to eliminate all aspects of tick-borne illnesses and not just Lyme disease when bitten by a tick.

“In a comprehensive review of 61 different published reports, Nieto and Foley found that 2 to 5 percent of young nymphal I. Scapularis ticks were reported to be co-infected with more than one microbe. Adult tick co-infection rates with B. burgdorferi varied widely between 1 to 28 percent across the reports analyzed.”4

A very interesting theory as to why people experience Lyme disease symptoms is explained by Dr. Ettinger in his research. His theory is based around the fact that the tell-tale signs of Lyme disease are not generated by the bacteria, Borrelia burgdorferi. Instead, he believes the symptoms can be caused by the reactivation of one or more herpes virus within the nervous system. Herpesviridae is a large group of viruses with six common variants. The issues related to these variants can range in their severities from a common cold sore to encephalitis.

Herpes virus is known for its mechanisms that allow it to stay dormant in a persons immune system for years at a time. Herpes virus reactivates when the immune system is under some form of stress. A Borrelia burgdorferi encounter with our immune system or another pathogen from a tick can cause this reactivation. According to the World Health Organization, 67% of the population under the age of 50 have HSV-1.

More research needs to be done to investigate these reasons, as it could be extremely beneficial not only to those who are suffering from PTLDS, but also in hopes of stopping the illness from making it into our systems in the first place. Regardless of your particular stance, it is apparent that as the number of Lyme infections increases, the number of cases of PTLDS will grow with it. It’s important to find better preventative measures to aid in the fight against the disease so that people won’t have to struggle with finding long-term treatment options for a debilitating disease.


1 Rebman, Alison W, and John N Aucott. “Post-treatment Lyme Disease as a Model for Persistent Symptoms in Lyme Disease.” Frontiers in medicine vol. 7 57. 25 Feb. 2020, doi:10.3389/fmed.2020.00057

2 J Clin Invest. 2020;130(5):2148-2151.

3 Al-Robaiy, Samiya et al. “Metamorphosis of Borrelia burgdorferi organisms–RNA, lipid and protein composition in context with the spirochetes’ shape.” Journal of basic microbiology vol. 50 Suppl 1 (2010): S5-17.

4Kulkarni, Manisha A et al. “Major emerging vector-borne zoonotic diseases of public health importance in Canada.” Emerging microbes & infections vol. 4,6 e33. 10 Jun. 2015, doi:10.1038/emi.2015.33