Does a “Watch and Wait” Approach Work for Lyme Disease?
Some patients with persistent symptoms after Lyme disease are advised to follow a “watch and wait” approach rather than receive additional treatment. However, several studies suggest that a significant proportion of patients do not fully recover after standard therapy.
What Do the Data Show?
Investigators at Johns Hopkins University followed patients after a standard 3-week course of doxycycline.
- 14% met criteria for Post-Treatment Lyme Disease Syndrome (PTLDS)
- 38% remained symptomatic
- Only 47% returned to their prior level of health at 6–12 months
More than half of patients had not fully recovered 6 to 12 months after treatment.
These findings raise questions about whether observation alone is sufficient for all patients.
Long-Term Outcomes
A separate study from New York Medical College followed patients 11 to 20 years after early Lyme disease.
Approximately 11% continued to meet criteria for PTLDS despite initial treatment.
Many patients also developed additional medical conditions or required hospitalization over time, although the relationship to Lyme disease was not fully defined.
What Happens in Clinical Practice?
Despite recommendations supporting observation in some cases, retreatment with antibiotics is commonly reported in real-world practice.
One analysis of insurance claims found:
- 18% of patients received extended antibiotic courses (average ~86 days)
- 43% were switched between antibiotics
- 18% received combination therapy
These patterns suggest that clinicians often individualize care when symptoms persist.
Is One Approach Enough?
Lyme disease does not always follow a uniform course.
A “one-size-fits-all” approach may not address the variability seen in patient outcomes.
There remains ongoing discussion within the medical community regarding the role of additional treatment versus observation in patients with persistent symptoms.
Clinical Perspective
For some patients, symptoms resolve with time. For others, ongoing symptoms may affect quality of life and daily function.
When more than half of patients report incomplete recovery in some studies, the decision to observe without further intervention may warrant careful consideration.
Shared decision-making—taking into account symptoms, history, and patient preferences—may be an important part of care.
Patients may benefit from understanding persistent symptoms, reviewing treatment variability, and exploring ethical considerations when treatment decisions are uncertain.
References
- Aucott JN et al. Clin Vaccine Immunol. 2016.
- Weitzner E et al. Diagn Microbiol Infect Dis. 2016.
- Nadelman RB et al. Ann Intern Med. 1992.
- Massarotti EM et al. Am J Med. 1992.
- Tseng YJ et al. Clin Infect Dis. 2015.
Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.
Symptoms • Testing • Coinfections • Recovery • Pediatric • Prevention
I have been diagnosed with acute Lymes disease several years ago. I had since had breast augmentations and was deemed disabled one year later. I have neck and back pain- immflamtion from scar tissue in hips- spondylitis- mayo facial- and major musculoskeletal issues that cause spasms 80% of my day- need a cane to just support my weight most days. I have a knowing’ I have BII Breast implant illness due to Lymes attacking the foreign object in my body. I’m scared to death I have mold in sub-muscular implants and pain from them. The complicates from Lymes and implants has cost me depression and full body musculoskeletal spasms. I am on a lot of different mess. But proud to say I’m doing it all Opiate free. Which is not easy road to travel. My insurance won’t cover an explant and I just KNOW if I got my implants removed more than half of my health issues would dissipate. I have a team of dry. Including a rheumatologist. What’s your opinion on what I should do? I get brain fog, confused easily, can’t add properly or speak without mixing up my words, diagnosed with depression among other muscular issues. I feel like the Lymes is mimmoking a lot of my disabilities and I have been misdiagnosed many times! I have Medicare and Medicaid! No one will help me, I don’t know where to turn since most doctors are uneducated. What should I do? Your my only hope- Jessica Johnson Im**********@***il.com. Please read my story at
http://Www.gofundme.com/operatiomjessica
Oops sorry. http://Www.gofundme.com/operationjessica I spelled it wrong. Please. Read my story and see if you find any similarities! I also been having sides of mf my neck swell up & tingle and close off half my airway. And newer symptom is vision disturbingses PLEASE HELP
Please lord let this doctor help me- Jessica
Two weeks later, their suspicions were confirmed: McWilliams tested positive for Lyme. After a course of antibiotics, the disease and her symptoms disappeared.