She Was Told to Wait. Then Told It Was PTLDS. But Her Symptoms Persisted.
Some Lyme patients improve quickly.
Others continue to struggle long after treatment ends.
And sometimes the explanation is more complicated than expected.
A woman developed persistent symptoms after treatment for Lyme disease and was eventually told she had
Post-Treatment Lyme Disease Syndrome (PTLDS).
She was advised to wait for recovery.
But over time, her symptoms continued.
What followed raised an important clinical question:
What if the original explanation was incomplete?
Persistent Symptoms After Lyme Treatment
Many patients improve after standard Lyme disease treatment. Others continue to experience fatigue, cognitive dysfunction, pain, sweats, dizziness, or exercise intolerance long after therapy ends.
Some are diagnosed with PTLDS, a term used to describe persistent symptoms following standard treatment.
However, PTLDS does not explain why symptoms persist in every patient.
In some individuals, further evaluation may reveal:
- Missed co-infections
- Autonomic dysfunction
- Immune dysregulation
- Inflammatory complications
- Ongoing infection-related concerns
This uncertainty is one reason persistent symptoms deserve careful reassessment rather than automatic dismissal.
Babesia Was Eventually Identified
In this case, the patient’s ongoing symptoms were later found to be more consistent with
Babesia,
a malaria-like parasitic infection commonly transmitted alongside Lyme disease.
Unlike Lyme disease, Babesia is not treated with doxycycline alone.
Symptoms that raised concern included:
- Drenching night sweats
- Shortness of breath or air hunger
- Exertional fatigue
- Temperature dysregulation
- Persistent symptom fluctuation
These symptoms are often attributed to anxiety, menopause, burnout, long COVID, or unexplained PTLDS.
But in patients with tick exposure and persistent illness, co-infections deserve consideration.
Why This Matters Clinically
Not every patient with persistent symptoms has ongoing infection.
At the same time, not every patient with persistent symptoms has a fully resolved infection either.
Some patients improve after treatment directed at previously unrecognized co-infections or overlapping conditions.
This is why the distinction between PTLDS, co-infection, immune dysfunction, autonomic instability, and ongoing infection-related concerns remains clinically important.
The challenge is that current testing often cannot fully distinguish between these possibilities.
The Problem With “Wait and See”
In some cases, patients are advised to simply wait for symptoms to improve.
For certain individuals, that approach may be appropriate.
But when symptoms continue worsening, fluctuate significantly, or fit recognizable co-infection patterns, additional evaluation may be warranted.
Clinical reassessment may include:
- Review of tick exposure history
- Reevaluation for Babesia or Bartonella
- Assessment for autonomic dysfunction
- Review of symptom progression over time
Persistent symptoms should not automatically be assumed to represent only one mechanism.
Clinical Takeaway
Persistent illness after Lyme disease exists along a spectrum, and symptoms do not always have a simple explanation.
Some patients recover fully. Others continue to experience symptoms that may involve overlapping mechanisms — including immune dysregulation, autonomic dysfunction, co-infections, inflammatory injury, or ongoing infection-related concerns.
In some patients, further evaluation may identify contributors such as Babesia or other co-infections that were not initially recognized.
Careful reassessment often matters more than prematurely forcing symptoms into a single diagnosis. Ongoing symptoms deserve thoughtful evaluation rather than automatic dismissal.
References:
- Rebman AW, Aucott JN. Post-treatment Lyme Disease as a model for persistent symptoms in Lyme disease. Front Med (Lausanne). 2020;7:57.
- Vannier E, Krause PJ. Human babesiosis. N Engl J Med. 2012;366(25):2397-2407.
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 had LYME since Oct 1984. It was originally diagnosed Epstein Barr Virus & Chronic Fatigue Syndrome. I have had a few major stressful events and I am bedridden again like in the early stages. It is severely active. I have never been treated with antibiotics for it. Ironically last week I had bilateral itching near both thumbs to the point of drawing blood. Now I am having severe joint pain in both thumbs which I was told years ago was arthritis. I am assuming I have significantly elevated EBV again as I feel as bad as I did 38 years ago.
Hi Paula, how are you doing now? Did you ever take antibiotics or seek herbal remedies?
Great article. I was unaware that a Herxheimer reaction was not caused by the release of toxins as the bacteria were killed. I also was not aware the cause remains unknown. An incredibly complex disease (s) that in Canada is not recognized at all. As a result little research is being done. Thanks
I was interested to read that the boy was given additional antibiotic treatment, which was effective. It is good news that the spinal tap was negative. I am glad to hear that you typically avoid prescribing steroids, to avoid suppressing the immune system.
Besides low awareness, I think sometimes doctors are nervous about prescribing antibiotics beyond 30 days, unless there is a positive spinal tap.
I think I read of a slightly longer course being recommended for lyme arthritis.
If you find an attached tick, going to urgent care to have it removed professionally is a safer option – they may also prescribe a prophylactic antibiotic starting the same day.
You can get Lyme more than once.
I think probiotic drinks can be helpful to maintain immunity – even between antibiotic doses, as well as once the course of antibiotics has ended.
Thoughts?
Only 2 of 27 patients with neurologic Lyme disease had an abnormal spinal tap according to Logigian and Steere 1990 NEJM. That means up to 9 out of 10 patients with neurologic Lyme have a negative spinal tap. I am not a fan of a single dose doxycycline for a tick bite. I encourage probiotics during and after antibiotic treatment.
Tiny ticks got all over me delivering mail to a house with an overgrown lawn in the country, only two got beneath my clothing and attached.. 2 weeks later i was hurting somewhat but it went away. I thought no more of the tick bites. a couple of weeks later I thought i had a circular area of veins becoming varicose and I wish I had looked better as it has went away and I believe it to have been the bullseye rash. 2 years later I have neurological symptoms muscular vasciculations, weakness and fatigue and am currently thinking about going on antibiotics. I do have enough medications to get me through 4 weeks of doxycycline as my dr’s are slow to respond or do anything at all no testing no nothing I am tempted to treat myself with 4 weeks of antibiotic. Is there a reason I shouldn’t go ahead and do this. I don’t want to be sick anymore
I advise my patients to work with a doctor experienced in treating chronic manifestations of Lyme disease and work to rule out other causes of their illness.
I’m sorry, but they do not work with you. They think it’s all in your head and when you try to suggest something to them they ask what doctorate I got my degree from that’s terrible.
I experienced acute knee swelling and tendinitis when taking azithromycin and 4.5 months later same thing when taking doxycycline. I just tested positive for Lyme and wondering if that’s why I had this reaction to antibiotics. If so I don’t know how to treat it without making it worse.
I have patients with Lyme disease who present with a Herxheimer reaction. I have sene this flare up in patients with a persistent infection.
I have received 2x doxycycline 100mg on day one, followed by 30 days of 100mg a day of doxycycline, followed by 12 days of 200mg of doxycycline a day, is this enough to eradicate Lymes disease????
I suspect I had Lymes for nearly 5 months before diagnosis and treatment starting as I had no bullseye rash, however I had a large fixed, hard and painful lymph node come up suddenly under my jaw bone and had felt unwell for a couple of days, before diagnosis and treatment I experienced severe neurological pain, especially in my head and torso joint pain, among other issues
I ask my patient to return after a month to determine whether additional treatment might be warranted. Some are well. Some are not. Some patients have a co-infection ie Babesia that is not treated with doxycycline