NEUROLOGIST LETTER
Updated: 49 minutes ago
This letter is for you to give to your neurologist, so they understand how Lyme disease and its co-infections can affect the brain and nerves, take you seriously and look deeper. Copy and paste it into an email or your patient portal, or print this page and bring it to your appointment. Add your name at the bottom. Every point comes from a published medical study, ILADS, a Lyme-literate doctor's treatment guidelines, an FDA review, a state law or the testing lab's own information, and each one is listed at the end, with a link where one is available, so your doctor can check it for themselves.
Short on time or energy? A quick-view graphic with the key points is at the bottom of this post.
COPY FROM HERE
Dear Doctor,
Thank you for taking the time to read this. Because of my Lyme disease (and/or tick-borne co-infections), I'm asking you to look carefully at my neurological symptoms. I'm not asking you to have all the answers. I'm asking you to keep an open mind, because a lot of new research on Lyme and the nervous system has come out in the last few years. I've kept this to peer-reviewed studies, ILADS guidance, Dr. Joseph Burrascano's treatment guidelines, FDA reviews, state laws and the testing lab's own information.
THE BRAIN, COGNITION AND NEUROINFLAMMATION
- Columbia University (Gorlyn et al., Archives of Clinical Neuropsychology, 2023): in post-treatment Lyme, problems with word fluency were not explained by memory or processing speed, unlike in major depression, so they appear to be a separate deficit.
- Johns Hopkins (Marvel et al., PLOS ONE, 2022, small study): during a working memory task on fMRI, 12 carefully screened patients with post-treatment Lyme responded more slowly than 18 healthy controls, under-activated several regions the task needs, and activated extra regions the controls did not use, including frontal white matter. The authors conclude that the brain is altered in post-treatment Lyme, with changes in frontal lobe white matter.
- Johns Hopkins (Coughlin et al., Journal of Neuroinflammation, 2018, pilot study): PET imaging of a marker of activated glial cells showed higher levels in eight brain regions in 12 patients with post-treatment Lyme symptoms than in 19 healthy controls.
- Tufts University (Logigian, Kaplan and Steere, New England Journal of Medicine, 1990, landmark study): of 27 patients with chronic neurologic Lyme, 89% had an encephalopathy affecting memory, mood or sleep, which started anywhere from a month to 14 years after infection, and 14 of those 24 had memory impairment on neuropsychological testing. Six months after two weeks of IV ceftriaxone, 63% had improved, and another 22% improved but then relapsed.
LYME BACTERIA FOUND IN THE BRAIN AND NERVOUS SYSTEM
- Tulane University and Columbia University (Gadila et al., Frontiers in Neurology, 2021): a patient treated with antibiotics for Lyme later developed dementia, and in this autopsy case study, Borrelia burgdorferi was found by PCR in several central nervous system tissues and by immunofluorescence in the spinal cord.
- Tulane University (Crossland, Alvarez and Embers, American Journal of Pathology, 2018): in rhesus macaques treated with 28 days of doxycycline, intact spirochetes were found in the brains of two treated animals, Borrelia staining was seen near peripheral nerves, and there was inflammation in the leptomeninges, brainstem and peripheral nerves. The authors say this supports the idea that chronic Lyme symptoms can come from persistent spirochetes and/or leftover bacterial antigen. This was an animal study.
NEUROPSYCHIATRIC EFFECTS
- Rutgers (Bransfield, Mao and Greenberg, Healthcare, 2023): this review explains that infections outside the brain can still affect it through the immune system. Inflammation raises the enzyme IDO, which shifts tryptophan away from serotonin and melatonin and toward quinolinic acid, a neurotoxin.
- Columbia University and Copenhagen (Fallon et al., American Journal of Psychiatry, 2021): in a nationwide Danish study of nearly 7 million people, those with a hospital diagnosis of Lyme had 28% higher rates of mental disorders, 42% higher rates of mood disorders, twice the rate of suicide attempts and a 75% higher rate of death by suicide. The authors advise clinicians to be aware of the possible psychiatric effects of Lyme.
CRANIAL NEUROPATHIES AND FACIAL PALSY
- Finland (Nieminen et al., BMC Infectious Diseases, 2026): facial palsy was the most common sign of neuroborreliosis in children (76%). One third of the children had no Borrelia antibodies in their blood, so a negative blood test doesn't rule out Lyme.
- Mass General and Mass Eye and Ear, Harvard (McEntire et al., Neurology: Clinical Practice, 2025): facial palsy is a common sign of Lyme and needs prompt antibiotics, and the limits of current lab tests can make it hard to tell apart from Bell's palsy early on. The authors built the FACE DROPS score, where fever, aches, headache, unusual fatigue, a dermatomal or radicular pattern and stiff neck point toward Lyme, and ear pain points slightly toward Bell's palsy. A score of 7 or more pointed to Lyme with at least 96% accuracy, and the authors say the tool may help guide antibiotics while lab results are pending when there is no rash.
- National Institutes of Health (Marques et al., Annals of Clinical and Translational Neurology, 2022): of 44 patients with Lyme facial palsy, 13 had it on both sides, usually one side after the other, and 14 also had painful radiculopathy. The authors advise actively asking about a recent rash or feverish illness in anyone with sudden facial palsy, especially when both sides are affected.
NEUROPATHY: RADICULONEURITIS, POLYNEUROPATHY AND SMALL FIBER NEUROPATHY
- Finland (Nieminen et al., BMC Infectious Diseases, 2026): painful inflammation of the nerve roots (radiculitis) was the most common sign of neuroborreliosis in adults (37%).
- Mass General Brigham and Harvard (Novak et al., Scientific Reports, 2025): of 107 patients whose small fiber and autonomic neuropathy was proven by skin biopsy and autonomic testing, 16 had confirmed earlier Lyme disease or post-treatment Lyme disease syndrome, and Babesia and Bartonella infections were also recorded.
- University of Bologna (Furia, Liguori and Donadio, Brain Sciences, 2025): this neurologists' review of what causes small fiber neuropathy connects post-treatment Lyme with damage to both the sensory and the autonomic small nerve fibers, and advises looking for small fiber neuropathy when someone with an infection or other linked condition has nerve-type pain.
- Norway (Solheim et al., European Journal of Neurology, 2024): of 105 patients with neuroborreliosis followed for a year, 79% had radiculopathy and 13% had only subjective symptoms, mostly pain, so neuroborreliosis can show up as pain alone. A year after treatment, 15% still had symptoms affecting daily life, most often fatigue, and a high symptom burden was linked to lasting complaints.
- Norway (Skarstein et al., Journal of Neurology, 2024): in 90 patients with neuroborreliosis, about 60% had raised blood levels of neurofilament light, a marker of nerve damage, when diagnosed. Levels were higher when spinal nerve roots were inflamed, and in most patients they had returned to normal six months after doxycycline.
- Slovenia (Ogrinc et al., Clinical Infectious Diseases, 2022): in 112 patients with painful Lyme radiculitis (Bannwarth syndrome), the tick-bite rash was on the same body area as the nerve-root pain in 79%, which the authors say suggests Borrelia travels from the skin along peripheral nerves to the spinal cord.
- Slovenia (Ogrinc et al., Journal of Internal Medicine, 2021): in 693 patients with acrodermatitis chronica atrophicans, a late form of Lyme that affects the skin, about one in five (20.8%) had symptoms or signs of nerve damage in the arms or legs (peripheral neuropathy).
- Harvard (Novak et al., PLOS ONE, 2019, small study): all 10 patients with post-treatment Lyme had at least one abnormal skin biopsy for small fiber neuropathy, and all had abnormal cerebral blood flow velocity on autonomic testing.
- Tufts University (Logigian, Kaplan and Steere, New England Journal of Medicine, 1990): 70% of patients with chronic neurologic Lyme had a polyneuropathy, with nerve-root pain or tingling in the hands or feet, and nerve testing showed an axonal polyneuropathy in 16 patients.
AUTONOMIC DYSFUNCTION, DYSAUTONOMIA AND POTS
- Serbia (Milovanovic et al., Canadian Journal of Physiology and Pharmacology, 2026): 233 patients with late-stage Lyme had significantly more sympathetic and parasympathetic dysfunction than 91 healthy controls, with lower heart rate variability and baroreflex sensitivity.
- Serbia (Milovanovic et al., Biomedicines, 2025): orthostatic hypotension was found in 53.4% of patients with late-stage Lyme, with a pattern suggesting adrenergic failure.
- Johns Hopkins (Adler et al., Frontiers in Neurology, 2024): this review discusses the evidence that Borrelia burgdorferi can cause dysautonomia. It points out that dysautonomia is now broadly recognized after COVID-19, that post-treatment Lyme shares many of the same features, and it reviews how to evaluate and treat dysautonomia.
VASCULAR INVOLVEMENT: CEREBRAL VASCULITIS AND STROKE
- Denmark (Dos et al., Journal of Neural Transmission, 2026): 13 of 413 patients with neuroborreliosis had a stroke or TIA, and 7 of the 13 had cognitive symptoms before the stroke. When high-resolution vessel wall imaging was done (3 patients), it showed concentric vessel wall enhancement.
- Connecticut and India (Daniel et al., scoping review, Annals of Indian Academy of Neurology, 2026): in 90 cases of neuroborreliosis with cerebrovascular involvement, imaging showed vasculitis in 72% and ischemic stroke in 51%, and most improved once Lyme was found and treated, which shows why it should not be missed. The authors advise suspecting neuroborreliosis in unexplained (cryptogenic) stroke in endemic areas.
CO-INFECTIONS AND THE NERVOUS SYSTEM
Bartonella
- North Carolina State University (Bush et al., Parasites and Vectors, 2024): this review of published cases links Bartonella to cranial nerve paralysis, neuropathic pain, Guillain-Barre syndrome, CIDP, peripheral vasculitic polyneuropathy, transverse myelopathy, neuroretinitis, encephalitis and encephalopathy, cerebral vasculitis and aneurysm, and neuropsychiatric conditions.
- Columbia University and North Carolina State University (Delaney et al., Frontiers in Psychiatry, 2024): DNA (PCR) testing of the blood found Bartonella in 43.2% of adults with psychosis, compared with 14.3% of adult controls.
Babesia
- Yale (Locke et al., Emerging Infectious Diseases, 2023): more than half of 163 patients hospitalized with babesiosis had at least one neurologic symptom, most often headache, confusion or delirium, and impaired consciousness.
Other tick-borne infections
- Spain and Stony Brook University (Garcia-Monco and Benach, Journal of Neurology, 2025): this review notes that Powassan virus and tick-borne encephalitis virus injure the nervous system directly, that Babesia microti and Ehrlichia can cause neurologic disease, and that infection with more than one tick-borne pathogen can make illness more severe.
WHAT ILADS TEACHES
- The International Lyme and Associated Diseases Society (ILADS) teaches that Lyme is a clinical diagnosis. Lab tests can back it up, but they can't make or rule out the diagnosis on their own.
- Fewer than 30% of people with Lyme in the U.S. remember a tick bite, and fewer than 20% of Lyme rashes look like the classic bull's-eye. ILADS also notes that some patients have flu-like symptoms with no rash, or no memory of one, and that doctors should still consider Lyme where it is common, even without that sign.
- ILADS advises that Lyme be on the list of possible causes (the differential diagnosis) for neurologic conditions.
- ILADS lists these among the symptoms of Lyme: facial nerve weakness or paralysis (often mislabeled as Bell's palsy), severe headaches and neck stiffness, nerve pain, numbness, tingling, hot or cold sensations, cognitive dysfunction, memory impairment, pain that can interfere with sleep, lightheadedness or fainting, and psychiatric symptoms including depression, anxiety and mood changes.
- ILADS notes that Lyme blood tests miss more cases when Lyme affects the nerves: the Western blot picks up about 72% of neurologic cases, compared with 96% of Lyme arthritis cases. So a negative test does not rule out neurologic Lyme.
WHAT TO KNOW ABOUT LYME TESTING
- Standard tests miss many infections. A 2026 study in the Journal of Clinical Microbiology found the four FDA-cleared two-tier testing methods it studied missed 64% to 78% of early Lyme cases at the first blood draw.
- IGeneX is a CLIA-certified lab licensed by New York State, and its Lyme ImmunoBlots are the foundation of two FDA-cleared test kits (IgG 2024, IgM 2025). A positive result from IGeneX deserves to be evaluated, not dismissed.
- Many states have Lyme laws. Maryland and Rhode Island laws require that patients be told a negative Lyme test does not necessarily mean they don't have Lyme.
WHAT I'M ASKING
- Please listen to my history and symptoms, even if my blood tests are negative.
- Please don't rule out Lyme because I don't remember a tick bite or never saw a rash.
- Please consider Lyme and its co-infections, including Bartonella and Babesia, as a possible cause of my neurological symptoms, and use your judgment on which tests fit my symptoms.
- If I have facial palsy, please consider Lyme alongside Bell's palsy, especially with the FACE DROPS signs.
- I would prefer to avoid steroids, since they can weaken the immune response to Lyme (ILADS treatment guideline, 2014; Dr. Joseph Burrascano).
- If I have burning, tingling or numbness, or feel worse when I stand, please consider small fiber neuropathy and autonomic dysfunction.
- If it would help to consult a colleague, Dr. Peter Novak, an autonomic neurologist at Brigham and Women's Faulkner Hospital (Mass General Brigham) and Harvard Medical School, has published research linking small fiber neuropathy and autonomic dysfunction to post-treatment Lyme.
- If you feel Lyme or a co-infection may be involved and this isn't an area you treat, please help me find a doctor who does.
- Being believed matters to me. In a Johns Hopkins study, post-treatment Lyme patients who felt dismissed by providers had worse symptoms and quality of life (Rebman et al., 2024). Dr. Robert Bransfield (Rutgers, 2017) found that Lyme and associated diseases contributed to suicidal thoughts in some people who were not suicidal before, and that negative attitudes toward Lyme from family, friends and doctors may add to that risk.
- Please work with me as a partner. I want to get better, and I believe we can do that together.
WHERE THIS RESEARCH COMES FROM
The studies in this letter include research from Johns Hopkins, Columbia, Tulane, Harvard, Yale, Tufts, North Carolina State, Stony Brook, Rutgers, the Hospital for Special Care in Connecticut and the National Institutes of Health, and from hospitals and research centers in Denmark, Norway, Finland, Italy, Serbia, Slovenia, Spain and India. The 2026 testing study comes from the Bay Area Lyme Foundation's Lyme Disease Biobank, and the letter also draws on FDA reviews and state Lyme laws.
Thank you for your time, your care and your willingness to learn more about this illness with me.
Sincerely,
(Your name)
SOURCES
Horn et al. - Evaluation of Standard and Modified Two-Tiered Testing Algorithms Using Well-Characterized Early Lyme Disease Samples (Journal of Clinical Microbiology, 2026)
IGeneX - Licenses and Certifications
IGeneX - FDA Clearance
FDA 510(k) Decision Summary - iDart Lyme IgG ImmunoBlot Kit, K233367 (August 2024)
FDA 510(k) Decision Summary - iDart Lyme IgM ImmunoBlot Kit, K242872 (June 2025)
Maryland Health-General Section 20-1701
https://mgaleg.maryland.gov/mgawebsite/Laws/StatuteText?article=ghg§ion=20-1701&enactments=false
Rhode Island General Laws Section 5-37.5-6, Lyme disease testing information disclosure
Gorlyn M, Keilp JG, Fallon BA - Language Fluency Deficits in Post-treatment Lyme Disease Syndrome (Archives of Clinical Neuropsychology, 2023)
Marvel CL et al. - A multimodal neuroimaging study of brain abnormalities and clinical correlates in post treatment Lyme disease (PLOS ONE, 2022)
Coughlin JM et al. - Imaging glial activation in patients with post-treatment Lyme disease symptoms: a pilot study using [11C]DPA-713 PET (Journal of Neuroinflammation, 2018, older source, still worth reading)
Logigian EL, Kaplan RF, Steere AC - Chronic neurologic manifestations of Lyme disease (New England Journal of Medicine, 1990, landmark study, still worth reading)
Gadila SKG, Rosoklija G, Dwork AJ, Fallon BA, Embers ME - Detecting Borrelia Spirochetes: A Case Study With Validation Among Autopsy Specimens (Frontiers in Neurology, 2021, older source, still worth reading)
Crossland NA, Alvarez X, Embers ME - Late Disseminated Lyme Disease: Associated Pathology and Spirochete Persistence Posttreatment in Rhesus Macaques (American Journal of Pathology, 2018, older source, still worth reading)
Bransfield RC, Mao C, Greenberg R - Microbes and Mental Illness: Past, Present, and Future (Healthcare, 2023)
Fallon BA, Madsen T, Erlangsen A, Benros ME - Lyme Borreliosis and Associations With Mental Disorders and Suicidal Behavior: A Nationwide Danish Cohort Study (American Journal of Psychiatry, 2021, older source, still worth reading)
Nieminen A, Soderqvist S, Jero J, Oksi J - A retrospective study on differences in neuroborreliosis symptoms, signs and findings between adults and children (BMC Infectious Diseases, 2026)
McEntire CRS et al. - FACE DROPS: A Clinical Risk Assessment Tool for Differentiation of Acute Lyme Disease-Associated Facial Palsy From Bell Palsy (Neurology: Clinical Practice, 2025)
Marques A et al. - Characteristics and outcome of facial nerve palsy from Lyme neuroborreliosis in the United States (Annals of Clinical and Translational Neurology, 2022)
Novak P et al. - The effect of high-dose long-term therapy of intravenous immunoglobulins in autoimmune autonomic and sensory small fiber neuropathy: a retrospective open-label controlled study (Scientific Reports, 2025)
Furia A, Liguori R, Donadio V - Small-Fiber Neuropathy: An Etiology-Oriented Review (Brain Sciences, 2025)
Solheim AM et al. - Clinical and laboratory characteristics during a 1-year follow-up in European Lyme neuroborreliosis: A prospective cohort study (European Journal of Neurology, 2024)
Skarstein I et al. - Serum neurofilament light chain associates with symptom burden in Lyme neuroborreliosis patients: a longitudinal cohort study from Norway (Journal of Neurology, 2024)
Ogrinc K et al. - Colocalization of Radicular Pain and Erythema Migrans in Patients With Bannwarth Syndrome Suggests a Direct Spread of Borrelia Into the Central Nervous System (Clinical Infectious Diseases, 2022)
Ogrinc K et al. - Acrodermatitis chronica atrophicans: clinical and microbiological characteristics of a cohort of 693 Slovenian patients (Journal of Internal Medicine, 2021, older source, still worth reading)
Novak P et al. - Association of small fiber neuropathy and post treatment Lyme disease syndrome (PLOS ONE, 2019, older source, still worth reading)
Milovanovic B et al. - Cardiovascular autonomic dysfunction in late-stage Lyme disease: a comprehensive autonomic assessment (Canadian Journal of Physiology and Pharmacology, 2026)
Milovanovic B et al. - Cross-Sectional Study Evaluating the Role of Autonomic Nervous System Functional Diagnostics in Differentiating Post-Infectious Syndromes: Post-COVID Syndrome, Chronic Fatigue Syndrome, and Lyme Disease (Biomedicines, 2025)
Adler BL, Chung T, Rowe PC, Aucott J - Dysautonomia following Lyme disease: a key component of post-treatment Lyme disease syndrome? (Frontiers in Neurology, 2024)
Dos AH et al. - Ischemic stroke and transient ischemic attack associated with neuroborreliosis: a Danish retrospective cohort (Journal of Neural Transmission, 2026)
Daniel AS et al. - Exploring Cerebrovascular Manifestations of Neuroborreliosis: A Scoping Review (Annals of Indian Academy of Neurology, 2026)
Bush JC, Robveille C, Maggi RG, Breitschwerdt EB - Neurobartonelloses: emerging from obscurity! (Parasites and Vectors, 2024)
Delaney S et al. - Bartonella species bacteremia in association with adult psychosis (Frontiers in Psychiatry, 2024)
Locke S et al. - Neurologic Complications of Babesiosis, United States, 2011-2021 (Emerging Infectious Diseases, 2023)
Garcia-Monco JC, Benach JL - Tick-induced neurological disorders (Journal of Neurology, 2025)
ILADS - Lyme Disease Basics for Providers
ILADS - Controversies and Challenges in Treating Lyme and Other Tick-Borne Diseases
Cameron DJ, Johnson LB, Maloney EL - Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease (Expert Review of Anti-infective Therapy, 2014, ILADS's current guideline)
Burrascano JJ - Advanced Topics in Lyme Disease, 16th edition (2008, older source, still worth reading)
Rebman AW, Yang T, Aucott JN - Invalidation by medical professionals in post-treatment Lyme disease (Scientific Reports, 2024)
Bransfield RC - Suicide and Lyme and associated diseases (Neuropsychiatric Disease and Treatment, 2017, older source, still worth reading)
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