FINDING A LYME DOCTOR
Lyme Science Blog
Apr 14

Doctor Who Treats Chronic Lyme: What to Look For

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Doctor Who Treats Chronic Lyme: What to Look For

Finding a doctor who treats chronic Lyme disease can be difficult, especially when symptoms do not fit a clear neurologic, rheumatologic, or infectious disease diagnosis.

Many patients are told their blood tests are normal even though fatigue, pain, dizziness, cognitive problems, or neurologic symptoms continue.

Patients often begin searching for help after months—or even years—of symptoms that remain unexplained or inadequately treated.

Symptoms may change from day to day or come and go over time, making recognition more difficult.

Why Chronic Lyme Disease Is Difficult to Recognize

Lyme disease is often associated with rash, fever, or joint pain in its early stages. But delayed diagnosis or incomplete recovery may lead to a more complex, multi-system presentation.

Symptoms may include:

  • Fatigue that does not improve with rest
  • Migratory muscle or joint pain
  • Brain fog or memory difficulty
  • Numbness, tingling, or burning sensations
  • Mood changes, anxiety, or depression
  • Dizziness or heart palpitations

What often complicates diagnosis is evaluating each symptom separately instead of recognizing larger symptom patterns across systems.

Why Patients Struggle to Find a Lyme Doctor

It can be difficult to find a Lyme doctor when patients:

  • Do not recall a tick bite
  • Live outside traditionally endemic regions
  • Have negative or inconclusive blood tests
  • Present primarily with neurologic or psychiatric symptoms
  • Remain ill after a standard antibiotic course

Many patients also present with overlapping conditions involving neurologic, autonomic, inflammatory, or psychiatric symptoms.

These presentations may include autonomic dysfunction, co-infections, persistent symptoms, and post-treatment complications.

Learn more about autonomic dysfunction in Lyme disease and Lyme co-infections.

Not All Doctors Approach Chronic Lyme the Same Way

Standard treatment approaches often focus on early Lyme disease. But when symptoms persist or relapse, clinicians may differ in how they interpret the illness.

An experienced Lyme clinician may consider:

  • Clinical diagnosis when laboratory findings are inconclusive
  • Co-infections such as Babesia or Bartonella
  • Neurologic, cardiac, or autonomic involvement
  • Persistent symptom patterns over time
  • Individualized treatment strategies

This approach emphasizes recognizing symptom patterns across systems rather than relying solely on a single test result.

Telemedicine and Lyme Disease Care

Telemedicine expanded rapidly during the COVID-19 pandemic and has increased access to specialty care for many chronic medical conditions.

For some Lyme disease patients, telemedicine may reduce the burden of travel and improve access to clinicians familiar with tick-borne illness.

Telemedicine has also been used in neurology, infectious disease, mental health, and chronic disease management.

Published reviews have found telemedicine comparable to in-person care for several chronic medical conditions when appropriately applied.

Access to Lyme-related telemedicine services varies by state regulations, physician licensing, and individual clinical practice policies.

PTLDS and Persistent Symptoms

Some patients are diagnosed with post-treatment Lyme disease syndrome (PTLDS), a term used when symptoms continue after standard treatment.

Persistent symptoms may involve:

  • Fatigue
  • Cognitive dysfunction
  • Neuropathic pain
  • Sleep disturbance
  • Autonomic instability

Rather than assuming symptoms are simply “post-treatment,” clinicians may need to reassess the broader clinical picture.

Conditions That Can Mimic Lyme Disease

Lyme disease is frequently confused with:

  • Fibromyalgia
  • Chronic fatigue syndrome (ME/CFS)
  • Multiple sclerosis
  • Autoimmune disorders
  • Anxiety or depression
  • POTS and autonomic dysfunction

Chronic Lyme symptoms often fluctuate and overlap across systems—patterns that may distinguish them from more isolated conditions.

When Should You Seek a Lyme Disease Evaluation?

Patients may consider further evaluation when they experience:

  • Persistent fatigue or cognitive dysfunction
  • Neurologic or autonomic symptoms
  • Chronic pain without a clear explanation
  • Symptoms that persist despite prior treatment
  • Fluctuating multi-system symptoms

Learn more about delayed Lyme disease diagnosis.

Frequently Asked Questions

Why is it hard to find a doctor who treats chronic Lyme disease?

Chronic Lyme symptoms often involve multiple systems and may not fit standard diagnostic frameworks, making recognition more difficult.

Can Lyme disease be present with negative blood tests?

Some patients with Lyme-like symptoms may have negative or inconclusive blood tests, particularly when testing occurs early or symptoms are complex.

What symptoms do Lyme specialists evaluate?

Clinicians may evaluate fatigue, cognitive dysfunction, neurologic symptoms, autonomic problems, migratory pain, sleep disturbance, and co-infections.

Can telemedicine help Lyme disease patients?

Telemedicine may improve access to clinicians familiar with tick-borne diseases, depending on local regulations and physician licensing requirements.

What conditions can be mistaken for chronic Lyme disease?

Conditions commonly confused with Lyme disease include fibromyalgia, ME/CFS, autoimmune disorders, multiple sclerosis, and autonomic dysfunction.

Clinical Takeaway

Finding a doctor who treats chronic Lyme disease can be challenging because symptoms often involve multiple overlapping systems and may not fit conventional diagnostic patterns.

Careful clinical evaluation—including recognition of fluctuating symptoms, neurologic involvement, autonomic dysfunction, and co-infections—may help guide a more complete assessment.

Understanding broader symptom patterns may improve recognition of complex Lyme disease presentations and help patients pursue more appropriate evaluation.

Related Articles

What Is a Lyme Literate Doctor?
What Is Chronic Lyme Disease?
Persistent Lyme Disease Mechanisms
Lyme Disease Misdiagnosis
Lyme Disease Symptoms Guide

References

  1. Fallon BA, Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psychiatry. 1994;151(11):1571-1583.
  2. Sigra S, Hesselmark E, Bejerot S. Treatment of PANDAS and PANS: a systematic review. Neurosci Biobehav Rev. 2018;86:51-65.
  3. Muehlenbachs A, Bollweg BC, Schulz TJ, et al. Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis. Am J Pathol. 2016.
  4. Kanjwal K, Karabin B, Kanjwal Y, Grubb BP. Postural orthostatic tachycardia syndrome following Lyme disease. Cardiol J. 2011;18(1):63-66.
  5. Krupp LB, Hyman LG, Grimson R, et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 2003;60(12):1923-1930.
  6. Krause PJ, Telford SR 3rd, Spielman A, et al. Concurrent Lyme disease and babesiosis. Evidence for increased severity and duration of illness. JAMA. 1996;275(21):1657-1660.
  7. Rebman AW, Aucott JN. Post-treatment Lyme Disease as a Model for Persistent Symptoms in Lyme Disease. Front Med (Lausanne). 2020;7:57.
  8. Portnoy J, Waller M, Elliott T. Telemedicine in the Era of COVID-19. J Allergy Clin Immunol Pract. 2020.
  9. Hatcher-Martin JM, Adams JL, Anderson ER, et al. Telemedicine in neurology: Telemedicine Work Group of the American Academy of Neurology update. Neurology. 2020;94(1):30-38.
  10. Burnham JP, Fritz SA, Yaeger LH, Colditz GA. Telemedicine infectious diseases consultations and clinical outcomes: a systematic review and meta-analysis protocol. Syst Rev. 2019;8(1):135.

Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.

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7 thoughts on “Doctor Who Treats Chronic Lyme: What to Look For”

    1. The laws differ from state to state and continue to change. Doctors differ in their approach to telemedicine. I offer telemedicine once I have seen a patient but that varies from patient to patient and may also change over time.

  1. i live in France and my wife got lyme last year in ohio is there a way of contacting a doctor for a test review or any help?

  2. You use the word “may” multiple times in this post. I received a tick bite back on Thanksgiving day, and while I tested negative for Lyme at six weeks, acquired something that settled in my neck and can lead to migraine-like symptoms, nausea, and muscle stiffness if I stress my neck too much or put pressure on the back of my head/neck. Three weeks of doxycycline almost worked, but not quite. I’ve been in touch with various regional neurologists, rheumatologists, etc. and most are happy to see me…in March or April. I was hoping telehealth could be a way out, but it seems in reality specialists and telehealth don’t often mix.

  3. Dr. Daniel Cameron
    Tammy P Evans

    I need help finding a Dr. that can help me with neurological lyme disease symptoms. I am seeing a neurologist, but he is not up-to-date with treatment. I’ve had it for several years, but I had also had it for several years before being diagnosed. Right now I am having a really bad flare-up and just getting worse. I am in South Alabama in a small town that doesn’t even have a psychiatrist. I can’t even get help with symptoms, much less any appropriate treatment. Both of my ears at different times over the past 3 years have broke out with knots that are extremely painful and become infected from Lyme Disease infection. The skin around my ear will tear and then harden up like the texture of a shellfish. I am a landscape designer and contractor and I’m use to daily hard, physical labor, but now I can hardly get out of bed. I’ve gone into a tremendous amount of debt just to try to work. Now I don’t even know how I’m going to provide for me and my son and I can’t get any help. I am so worn down physically, mentally and emotionally that I couldn’t survive a round of antibiotics right now. I’ve had to go to the emergency room for fluids because I’m just so weak and somehow had become dehydrated. I feel like I should be in a hospital now, but if I were to go they’d probably just send me home not understanding what all is wrong with me as usual, just like it was so hard to get a diagnosis in the first place. I don’t know how much longer I can take this. I’m just exhausted. I can’t do anything but cry and I am getting more and more depressed every day and giving up. I just need somebody to help me and tell me what I should do that I would be able to in my situation.

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