takeaway: Persistent Lyme disease symptoms are common and serious, but the health-care community is deeply divided about how to care for patients with this problem. Massage therapists can help by establishing a safe environment and being supportive of clients with long-term Lyme disease consequences.

Meet Rosie.1 At age 28, Rosie was energetic, athletic, and powerfully motivated. She was a first-grade teacher and active in her community. That summer, she attended a family event in an area where disease-carrying ticks are common, and a few weeks later was struck down by an unknown illness. The first thing she noticed was fatigue and that her heart rate slowed alarmingly—to about 32 beats per minute. She had no rash or other swelling, so her primary care physician declined to test her for Lyme disease, and she did not take the recommended course of antibiotics.
Rosie was struggling with dizziness, fatigue, and peripheral neuropathy. She stayed in the classroom until spring, until she realized that she couldn’t continue. She resigned from teaching and moved in with her parents. Rosie had developed blinding migraines, and the antiseizure drugs she was prescribed to treat them made it nearly impossible for her to function. She spent the next two years on the family couch, struggling to do even the most basic self-care tasks, let alone work. She sought help from conventional medical doctors, including neurologists, immunologists, cardiologists, and other specialists, most of whom assumed she had chronic fatigue syndrome or an eating disorder.  
Feeling she had nothing to lose, she consulted a physician who, without examining her, recommended several months of high-dose, intense antibiotic therapy—enough that her pharmacist was reluctant to fill her prescriptions. (This physician turned out to be under probation for malpractice at the time, and shortly after Rosie’s treatment concluded, his office was raided, and he was shut down.) The drugs made her feel awful—so bad that at one point she discussed her funeral plans with her mother. The antibiotics also damaged her digestive tract, which has not fully recovered. But Rosie finally turned a corner and began to improve.
Rosie still has a low heart rate and occasional dizziness and migraines. She is also allergic to wheat—something new since her illness and treatment. But otherwise, her health and vitality have been restored. She is now active and healthy with a fulfilling, demanding job, and she is raising a family.
Did the sketchy medical treatment help her? It’s hard to say definitively because correlation is not causation—but nothing else she had tried made any difference. Rosie’s story is not typical, but it is also not unusual. Large-scale clinical trials have not demonstrated that this treatment strategy is effective or even safe, but for some people it seems to help. And this is at the heart of the many controversies that surround persistent Lyme disease symptoms.

What Is Lyme Disease?

Lyme disease is a tick-borne infection with a pathogen called Borrelia burgdorferi. It was first identified in the US in the town of Lyme, Connecticut, in 1982, where a scientist named Wilhelm Burgdorfer tracked what looked like a local spike in diagnoses of juvenile-onset rheumatoid arthritis to the action of a spirochetal bacterium spread through the bite of deer ticks.
Now, Lyme disease is acknowledged to be the most common vector-borne disease in the US and Europe, spread by the Ixodes species of ticks, especially deer ticks and Western black-legged ticks. Almost half a million new Lyme disease infections are diagnosed in the US each year.   
The bacteria that cause Lyme disease move in stages. The first is early localized disease, which might be marked by a bulls-eye rash (the technical term is erythema migrans), fever, night sweats, headache, swollen lymph nodes, and more. This usually develops 7–30 days after a tick bite. The rash is not always found, however, so this stage may be missed or mistaken for flu.
The next stage is early disseminated disease. It may involve more rashes, arrhythmia, headaches, facial nerve paralysis, peripheral neuropathy, inflammation of the spinal cord and nerve roots (radiculomyelitis), and debilitating fatigue.
The last stage is called late disseminated disease. This can involve painful, erosive inflammation of the large joints; knees, shoulders, and elbows are often affected and may develop permanent damage. In addition to causing arthritis, late Lyme disease can involve severe headaches and migraines, mental fogginess, muscle and joint pain, vertigo, tremors, depression, anxiety, dizziness, arrhythmia, and nerve pain.
It is surprisingly difficult to diagnose Lyme disease if no initial bulls-eye rash is found—which is the case about a third of the time. Blood tests may reveal some signs of exposure, but they do not distinguish whether that exposure is recent or happened a long time ago. Taking a test too early or too late in the process may yield inaccurate results. For this reason, Lyme disease diagnoses must rely on blood tests, a physical examination, and the patient’s possible exposure to ticks.
Lyme disease is typically treated with antibiotics, although the type and duration of prescriptions may vary. Most specialists agree that it is preferable to start treatment as early as possible, but not all infections are identified in the first stage. Many patients do well with the recommended antibiotic therapy that lasts for several weeks, and they emerge with no long-term loss of function, but some people do not respond to this strategy. Somewhere between 10–20 percent of Lyme disease patients remain symptomatic long after their treatment is complete, and the challenges and controversies that these patients must manage can be overwhelming.

Post-Treatment Lyme Disease Syndrome and Chronic Lyme Disease

The Centers for Disease Control and Prevention, the National Institute of Allergy and Infectious Diseases, and the Infectious Diseases Society of America (IDSA) recognize that a significant portion of people with Lyme disease have some signs and symptoms that persist for an unknown amount of time after treatment and have suggested the label post-treatment Lyme disease syndrome (PTLDS) as a diagnosis for these patients. PTLDS is generally recognized to involve evidence of previous exposure to Borrelia (which turns out to be difficult to demonstrate), along with symptoms of fatigue, pain, sleep disruptions, and cognitive difficulties that persist at least six months post-treatment. It is not clear why this develops, but immune system dysregulation appears to be an important factor. However, no specific diagnostic criteria have been developed to identify PTLDS, and no treatment protocol has been found to be widely successful. This is especially problematic in a health-care system that does not provide financial coverage for treatments without a proven track record. People with PTLDS are usually left paying out of pocket for any treatments they pursue.
Another organization, the International Lyme and Associated Diseases Society (ILADS), proposes a different label and diagnostic guidelines for post-acute Lyme disease symptoms. ILADS suggests the label chronic Lyme disease (CLD), proposing that, like PTLDS, it includes aspects of fatigue, brain fog, headaches, and sleep disturbances. However, ILADS adds to the list some neurologic features, neuropsychiatric presentations, arrhythmia and other heart problems, and musculoskeletal pain. ILADS does not rely on blood tests that indicate exposure to Borrelia burgdorferi.
Is chronic Lyme disease the same thing as post-treatment Lyme disease syndrome? It depends on whom you ask. Some scientists and researchers use the terms interchangeably. Others suggest that CLD is a broader umbrella. The term chronic Lyme disease is often discouraged by conventional health-care providers because it is considered to be so vague that it can encompass any number of other possible disorders, including chronic fatigue syndrome, fibromyalgia, and more.  
To further complicate matters, other pathogens may also be spread by the same species of ticks that carry Borrelia, but they require different treatment strategies. Therefore, a person’s long-term experience of fatigue, brain fog, aching joints, peripheral neuropathy, and varying skin rashes might be related to some other tick-borne illness and may be why their symptoms persist after their Lyme disease treatment is finished.

PTLDS/CLD Treatment

This is a complex situation because two issues affect the patient’s status: the pathogen and the person’s responses to infection. One thing most experts agree on is that treatment for PTLDS or CLD must be carefully individualized. Conventional health-care providers who follow IDSA guidelines typically recommend combinations of graded exercise, sleeping aids, low-dose antidepressants, antiseizure drugs (for migraines and fibromyalgia-like symptoms), and cognitive behavioral therapy.
By contrast, the ILADS recommendations include carefully monitored additional antibiotics, along with symptom control and other support.
At this point, the data on prolonged antibiotic use for PTLDS or CLD are not consistent, and, in fact, specifically discourage some antibiotic regimens because they don’t show benefit and demonstrate some important risks. Patients undergoing long-term antibiotic use for CLD have had serious, even deadly, complications related to their medical treatment. In addition, any time long-term antibiotics are in use, we raise the risk of developing resistant strains of bacteria.

Massage Therapy for Clients with CLD/PTLDS

Where does all this leave us and our clients whose lives have been disrupted by illness—whether it is chronic Lyme disease or not? It leaves us (and them) largely in the dark about specific circumstances—we can’t know if our client with fatigue, chronic pain, and brain fog has a long-term, hard-to-treat bacterial infection, chronic fatigue syndrome, or something else entirely. The medical community is deeply divided, and the health-care infrastructure cannot accommodate for the unknowns in this situation. Our clients may feel disrespected and abandoned by conventional therapeutic approaches, gaslighted by doctors who don’t believe their suffering is real, or preyed upon by unscrupulous purveyors of untested and possibly dangerous treatments.
The role of the massage therapist in this situation is to identify potential risks and benefits and then to design a session that maximizes benefits and minimizes or eliminates risks related to bodywork. It sounds simple, but in a situation where so much is unknown, it can be an intimidating process. To guide us along this path, I will fall back on the critical thinking steps I outlined in the May/June 2021 edition of Massage & Bodywork (“Critical Thinking,” page 54).

1. What Is the Question/Challenge/Goal?
Let us propose that your client with self-identified or diagnosed CLD wants simply to relax and feel less pain for the time they are on your table. If that relief from pain and fatigue lasts for a few hours, so much the better. But their main priority is to step away from their constant sense of frailty, just for a while, so that is our main goal.

2. What are the Relevant Variables?
Among the many variables before us, we must consider the client’s level of distress, any contributing factors we can identify, medications they use to manage their situation (and what side effects they cause), activities of daily living they can do easily, and activities that make them feel worse.

3. Challenge Assumptions
It is always good practice to check in on our assumptions about what our clients want and what we think is in their best interest because they’re not always the same things. Your client with CLD may have forward-head posture and a hiked-up hip, but if they have asked for an hour’s gentle respite from all-over pain and fatigue, then it’s not appropriate to try to “fix” their alignment today.

4. Consider Possible Strategies (and Alternatives)
In this step, we need to survey our own experience and history with similar situations. This is also a time to see what other health-care providers suggest for patients with similar goals—this, of course, is where research literacy becomes important.
I can save you a step: PubMed.gov offers nothing with search terms “chronic Lyme disease and massage” or “PTLDS and massage,” and Google Scholar has very limited information. These resources provide lots of material on chronic Lyme disease problems, but little or nothing about these issues in the context of massage therapy.

5. Plan and Execute Your Session
It’s time to get to work. Knowing what you know now about your client’s particular situation and goals, how will you design your session? What techniques, depth, speed, and duration will you use? What other accommodations will you need to make? CLD has a lot of unknowns about its pathophysiology, but some safety parameters are easy to identify: If our client has good sensation and healthy cardiovascular function, then most massage therapy that is comfortable is likely to be safe. If they have common complications such as facial paralysis, swollen joints, or muscle and joint pain, then it is possible to make adjustments in depth and focus of the massage.

6. Reflect on Results
This step is often shortchanged, usually because we interpret a client booking another massage as evidence that our work was successful. But especially with chronic, painful, hard-to-treat conditions, it is vital to track whether the choices we made were effective. This happens when we follow up—by communicating at the end of the session, the following day, or the following appointment—on if or how well the session we gave met the client’s goals. Your work is probably safe and welcome. But there may be things you could do to get even better results—so find out what that might look like.

Risks Vs. Benefits

In summary, risks include that massage might make inflammation or other pain-causing symptoms worse and the possibility that a massage therapist might be dismissive of a client’s experience or appear disrespectful of their choices.
Benefits include that massage might help reduce pain and stress and the therapeutic relationship might be supportive to the client.
I will leave it to you to identify how to minimize these risks and maximize these benefits—that will depend on each person’s field of expertise and approach to bodywork.
Chronic Lyme disease and post-treatment Lyme disease syndrome are persistent, painful, and often resistant to conventional treatment options. In this, they share a lot with other protracted, possibly post-infection conditions such as chronic fatigue syndrome, long COVID, fibromyalgia, and post-sepsis syndrome. Another common thread in all these conditions is that patients who are frustrated with their conventional medical options may seek massage therapy as part of their coping strategies.
It is not our job to decide if our client has CLD or not. It is not our job to share our opinion on whether CLD is real or our thoughts on the medical treatment they have decided to pursue. It is our job to be supportive of our client’s choice to receive massage and to celebrate their commitment to their health. Let’s do that.

Resources

BBC. “Long-Term Lyme Disease ‘Actually Chronic Fatigue Syndrome.’” BBC News (October 10, 2019). www.bbc.com/news/health-49998344.
Cairns, Victoria and Jon Godwin. “Post-Lyme Borreliosis Syndrome: A Meta-Analysis of Reported Symptoms.” International Journal of Epidemiology 34, no. 6 (December 2005): 1340–45. https://doi.org/10.1093/ije/dyi129.
Campos, Marcelo. “Lyme Disease: Resolving the ‘Lyme Wars,’” Harvard Health Blog. June 18, 2018. www.health.harvard.edu/blog/lyme-disease-resolving-the-lyme-wars-2018061814071.
Centers for Disease Control and Prevention. “Lyme Disease.” Last reviewed January 19, 2022. www.cdc.gov/lyme/index.html.
Contagion Editorial Staff. “Is There a Link Between Lyme Disease and Chronic Fatigue Syndrome?” Contagion Live. Filmed July 9, 2018. www.contagionlive.com/view/is-there-a-link-between-lyme-disease-and-chronic-fatigue-syndrome.
Degnan, Carolyn. “‘Gaslighting’ by Some Doctors Can Undermine the Chronically Ill.” LymeDisease.org. October 15, 2020. www.lymedisease.org/gaslighting-undermine-patients.
Dennis, Lori. “The Gaslighting of Chronic Lyme Patients Has to Stop.” The Mighty. January 9, 2017. www.themighty.com/2017/01/chronic-lyme-disease-gaslighting.
Gaudino, Elizabeth A., Patricia K. Coyle, and Lauren B. Krupp. “Post-Lyme Syndrome and Chronic Fatigue Syndrome. Neuropsychiatric Similarities and Differences.” Archives of Neurology 54, no. 11 (November 1997): 1372–76. https://doi.org/10.1001/archneur.1997.00550230045015.
Hsu, Mayla. “What is PTLDS?” Open Medicine Foundation. Accessed May 11, 2022. www.omf.ngo/what-is-lyme-disease.
International Lyme and Associated Diseases Society. “Controversies and Challenges in Treating Lyme and Other Tick-Borne Diseases.” Accessed May 11, 2022.
www.ilads.org/research-literature/controversies-challenges.
Kamat, Pavankumar. “Lyme Disease Tied to a Higher Risk of Fatigue.” Medscape. April 4, 2022. www.medscape.com/viewarticle/971496.
Lantos, Paul M. “Chronic Lyme Disease.” Infectious Disease Clinics of North America 29, no. 2 (June 2015): 325–40. https://doi.org/10.1016/j.idc.2015.02.006.
Maksimyan, S., Munir S. Syed, and Varun Soti. “Post-Treatment Lyme Disease Syndrome: Need for Diagnosis and Treatment.” Cureus 13, no. 10 (October 2021): e18703. https://doi.org/10.7759/cureus.18703.
Marzec, Natalie S. et al. “Serious Bacterial Infections Acquired During Treatment of Patients Given a Diagnosis of Chronic Lyme Disease—United States.” Morbidity and Mortality Weekly Report 66, no. 23 (June 2017): 607–09. https://doi.org/10.15585/mmwr.mm6623a3.
Meyerhoff, John O. “Lyme Disease: Practice Essentials, Background, Etiology.” MedScape. April 5, 2021. https://emedicine.medscape.com/article/330178-overview.
National Institute of Allergy and Infectious Diseases. “Chronic Lyme Disease.” Last reviewed November 21, 2018. www.niaid.nih.gov/diseases-conditions/chronic-lyme-disease.
Shor, Samuel et al. “Chronic Lyme Disease: An Evidence-Based Definition by the ILADS Working Group.” Antibiotics 8, no. 4 (December 2019): 269. https://doi.org/10.3390/antibiotics8040269.
Van Hout, Marie Claire. “The Controversies, Challenges, and Complexities of Lyme Disease: A Narrative Review.” Journal of Pharmacy and Pharmaceutical Sciences 21 (November 2018): 429–36. https://doi.org/10.18433/jpps30254.
Wong, Katelyn H., Eugene D. Shapiro, and Gary K. Soffer. “A Review of Post-Treatment Lyme Disease Syndrome and Chronic Lyme Disease for the Practicing Immunologist.” Clinical Reviews in Allergy and Immunology 62, no. 1 (October 2021): 264–71. https://doi.org/10.1007/s12016-021-08906-w.

Note

1. Not her real name; details have been edited for privacy.