LYME TESTING LETTER
Have you ever been told, "Your test was negative, so you don't have Lyme"? Or had a positive IGeneX test brushed off with "This is a false positive, you don't have Lyme"? I have been there, and so have so many of you. We won't tolerate this any longer. Our doctors must take the time to learn. We don't deserve to be dismissed because they don't have the time to learn the new science.
The AMA's own ethics code asks every doctor to "continue to study, apply, and advance scientific knowledge."
Another thing doctors do to members of our community is refuse to believe a diagnosis or a positive test. Can you be a little bit pregnant? Would they say this about a pregnancy test? I will never understand why some doctors feel the need to tell someone they aren't sick, or to dismiss a disease with so much science behind it.
This letter is for any doctor who is relying on a test result alone. Every point comes from ILADS, the doctors' own mainstream guidelines, top universities, government agencies, the CDC's own words, state laws, medical ethics codes, national Lyme organizations, a major reference lab or peer-reviewed studies, and each one is linked at the end so your doctor can check it. 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.
There is a quick-view graphic with the key points at the bottom of this post.
WHICH LETTER SHOULD I BRING?
- Seeing your primary care doctor, or any doctor without their own letter? Bring the Doctor Letter.
- Seeing a specialist? Bring that doctor's letter: the Neurologist, Cardiologist or Gastroenterologist Letter. Each one includes the key testing facts.
- Is testing the problem? If your doctor says a negative test rules out Lyme, brushes off a positive test, or won't consider Lyme at all, bring this Lyme Testing Letter.
- Seeing a specialist, and testing is also the problem? Bring that doctor's letter to the visit, and send this Lyme Testing Letter a few days before through your patient portal so your doctor has time to read it.
Bring just one letter to the visit. A doctor is much more likely to read one letter than a stack of pages.
COPY FROM HERE
Dear Doctor,
Thank you for taking the time to read this. A lab result is being used to decide whether I have Lyme disease or a tick-borne co-infection, and I'm asking you to look at the whole picture. The science on testing has changed a lot in the last few years. ILADS, federal reports and state laws all recognize that a test result alone can't settle the question, and even the mainstream IDSA guidelines recommend clinical diagnosis, not lab testing, for the Lyme rash.
THE SHORT VERSION
- Lyme is a clinical diagnosis. ILADS teaches this, and even the mainstream 2020 IDSA guidelines recommend clinical diagnosis, not lab testing, for the Lyme rash. No rash, or no memory of a tick bite, doesn't rule out Lyme (ILADS).
- Standard tests miss many infections. A 2026 study 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 ImmunoBlot tests are the foundation of two FDA-cleared test kits.
- A positive result should be evaluated, not dismissed. A National Academies report on diagnostic error includes "failure to act on results of monitoring or testing" among diagnostic errors.
- At least 19 states have Lyme laws or medical board rules, including laws telling patients that a negative test doesn't necessarily mean they don't have Lyme.
The details and sources for each point are below.
LYME IS A CLINICAL DIAGNOSIS
- The International Lyme and Associated Diseases Society (ILADS) teaches that Lyme is diagnosed clinically, based on history, symptoms, exam and possible tick exposure. Lab tests can support the diagnosis, but on their own they can't make it or rule it out.
- The 2020 IDSA, AAN and ACR Lyme guidelines say the same about the Lyme rash: "we recommend clinical diagnosis rather than laboratory testing." They note that as few as 20% of untreated patients with a single Lyme rash test positive on a blood sample taken within a week of noticing the rash, that early neurologic Lyme can sometimes test negative at first, and that patients can be infected more than once, especially if the first infection is treated promptly and a full antibody response never develops.
- The CDC itself says its Lyme case definition is for counting cases, not for diagnosing patients. On that page it states that surveillance case definitions "are not intended to be used by healthcare providers for making a clinical diagnosis or determining how to meet an individual patient's health needs."
- The HHS Tick-Borne Disease Working Group, created by Congress, lists this knowledge gap among clinicians, first identified in its 2018 and 2020 reports, in its 2022 report: the "misconception that patients who do not meet CDC's surveillance case definition cannot have Lyme disease."
- Fewer than 30% of U.S. Lyme patients remember a tick bite, and fewer than 20% of Lyme rashes look like a classic bull's-eye (ILADS).
- 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.
STANDARD TESTS MISS MANY INFECTIONS
- Johns Hopkins and Stanford (Journal of Clinical Microbiology, 2020, older source, still worth reading): Lyme bacterial DNA was found by PCR in the skin of patients with a Lyme rash, yet 20 of those 43 PCR-confirmed infections (46.5%) stayed negative on standard two-tier testing at both the first visit and the follow-up.
- Lyme Disease Biobank researchers, with co-authors from Mayo Clinic and Massachusetts General Hospital (Journal of Clinical Microbiology, 2026): the four FDA-cleared two-tier testing methods studied missed 64% to 78% of early Lyme cases at the first blood draw, including people with an EM rash.
- Lyme Disease Biobank researchers, with co-authors from Mayo Clinic and Stony Brook University (Frontiers in Medicine, 2025): only 34% of patients with a Lyme rash larger than 5 cm tested positive on standard two-tier testing at their first blood draw.
- New York Medical College and Tulane (Clinical Infectious Diseases, 2008, older source, still worth reading): the standard two-tier tests in this study were made from a single Lyme strain, B31. In 167 patients with culture-proven Lyme, two-tier testing caught 54.3% of infections caused by strains of the same type as B31, but only 25.0% of infections caused by one of the other strain types.
- Johns Hopkins Lyme researchers Rebman and Aucott (Clinical Rheumatology, 2015, older source, still worth reading): 41 of 104 patients (39.4%) with a doctor-diagnosed Lyme rash tested negative both before and after treatment. The authors note this makes past Lyme hard to recognize later in patients with unexplained or fibromyalgia-like symptoms.
- Tufts University and the Lyme Disease Biobank (Journal of Clinical Microbiology, 2025): the authors note that false negatives are common early on. A newer test was positive in 21 of 79 samples from patients whose doctors had diagnosed them clinically but whose standard tests were negative.
- Tulane University and Johns Hopkins, with the test's developer, Aces Diagnostics (Journal of Clinical Microbiology, 2026): the authors state that standard and modified two-tier tests are not sensitive enough in the first few weeks of infection. The new single-step test they studied, LymeSeek, detected over 90% of Lyme cases across all stages and found early cases, with or without a rash, that standard two-tier tests had missed. LymeSeek is still working toward FDA clearance and isn't available yet.
- The HHS Tick-Borne Disease Working Group's 2022 report says the two-tier test's weakness in early infection "is well established," and that "sensitivity in later disease is also less than ideal." It lists possible seronegativity among the major challenges, and notes that a person's antibody levels can fall outside a lab's normal ranges and yet the person can still be infected, and that for persistent or chronic Lyme, no tests exist to show that the bacteria have been wiped out.
- Tulane University (PLoS One, 2017, older source, still worth reading): in monkeys infected by ticks, intact, metabolically active Lyme bacteria persisted after doxycycline treatment, and the researchers found this persistence "may not be reflected" in antibody levels (animal study).
- In December 2025, the U.S. Department of Health and Human Services (HHS) stated that "current tests often miss early or late-stage infection." Global Lyme Alliance also notes that false negatives on Lyme blood tests could exceed 50%.
IGENEX IS STATE-LICENSED, AND ITS LYME TESTS ARE THE BASIS OF TWO FDA-CLEARED KITS
- IGeneX is a CLIA-certified high-complexity laboratory with a New York State Department of Health clinical laboratory permit, and New York approved its Lyme ImmunoBlots in 2018.
- IGeneX's Lyme ImmunoBlots are the foundation of the iDart ImmunoBlot kits, made by ID-FISH Technology, which received FDA clearance for IgG (2024) and IgM (2025) to aid in diagnosing Lyme disease. In the FDA's review, on the CDC's own early Lyme samples, the IgG kit found antibodies in 58.3%, compared with 30.0% for standard two-tier testing, and none of the CDC's 190 healthy and look-alike illness samples tested positive. The IgG kit also did not cross-react with any of 376 samples from people with other conditions, including Babesia, Bartonella, Epstein-Barr virus and syphilis.
- CDC's own 2019 recommendation says clinicians should consider FDA-cleared Lyme serologic tests as "CDC-recommended procedures."
A POSITIVE RESULT SHOULD BE EVALUATED, NOT DISMISSED
- The mainstream IDSA guidelines say standard testing is "highly specific when performed and interpreted according to current guidelines," and that "predictive value is increased when results are correlated with clinical features, patient history and risk factors."
- The FDA describes positive results from the cleared ImmunoBlot kits as "supportive evidence for the presence of antibodies and exposure," to be used together with the patient's clinical evaluation.
- In a survey of 986 people with Lyme (Healthcare, 2023), U.S. respondents with a positive blood test were no more likely to be believed than those who had no test: 79% said their doctor was still unconvinced.
- The National Academies' landmark report on diagnostic error (2015) reprints the Institute of Medicine's list of diagnostic errors, which includes "failure to act on results of monitoring or testing." The federal AHRQ patient-safety guide uses repeated positive test results that were "dismissed as contaminants" as an example of a thinking error that delayed the correct diagnosis.
- Geisinger and Johns Hopkins (Frontiers in Medicine, 2020, older source, still worth reading): when treatment was delayed more than 30 days after symptoms began, patients had 2.26 times the odds of post-treatment Lyme disease syndrome.
AT LEAST 19 STATES HAVE LYME LAWS OR MEDICAL BOARD RULES
Laws requiring warnings about Lyme test results:
- Delaware requires that patients get a written notice when blood is drawn for a Lyme test, warning that the tests can give wrong results and telling them to ask about retesting or treatment if unexplained symptoms continue.
- Maryland requires a written notice that standard tests are often inaccurate, that testing too early can miss antibodies, and that a negative result "does not necessarily mean you do not have Lyme disease."
- Rhode Island requires doctors who order a Lyme test to give patients a notice that standard tests "often result in false negative results" and that a negative result does not necessarily mean they don't have Lyme. The preamble to its Lyme law also states that "Laboratory tests for Lyme disease are not definitive."
- Virginia requires labs reporting Lyme results to the ordering provider, for tests ordered in an office-based setting, to include a notice that Lyme tests vary and may produce inaccurate results, so "a patient may not be able to rely on a positive or negative result."
- Maine's legislature directed the Maine CDC to post information that a negative Lyme test result does not necessarily mean Lyme disease is not present.
Laws recognizing clinical diagnosis:
- Connecticut, Massachusetts, Maine and New Hampshire law say Lyme can be diagnosed clinically from medical history and physical exam alone, or with tests that support it. Massachusetts and Maine law include clinical diagnoses that don't meet the CDC surveillance criteria.
- Pennsylvania and Rhode Island law define Lyme as a clinical diagnosis by a physician.
- Missouri's 2026 law says Lyme may be diagnosed by standard testing, a similar blood test "or by clinical evaluation."
Laws protecting doctors who treat clinically diagnosed Lyme:
- Connecticut, Illinois, Missouri, New York and Rhode Island law protect doctors from discipline based solely on Lyme treatment, such as long-term antibiotics, under each law's conditions. Iowa's medical licensing rules do the same, and New Hampshire and Vermont law direct their medical boards to state that doctors won't be disciplined solely for this kind of treatment. California protects doctors treating persistent Lyme under set conditions, and notes that the National Institute of Medicine has reported "it can take up to 17 years for a new best practice to reach the average physician and surgeon."
- Vermont's Board of Medical Practice, by state law, also directs its licensees to help patients understand the available Lyme tests, what a result means and the limits of that result (2014 policy, older source).
- Texas law requires its medical board, when a doctor is investigated over the choice of care for tick-borne diseases, to consider, if relevant, approved continuing education on tick-borne diseases the doctor completed in the last two years.
Other state laws:
- New Jersey law finds that Lyme "is often misdiagnosed or not diagnosed."
- Connecticut, Illinois, Minnesota, Rhode Island and West Virginia have insurance laws covering Lyme treatment.
CO-INFECTIONS ARE ALSO HARD TO CATCH
- ILADS notes that testing for co-infections like Bartonella and Babesia can be challenging, and that available tests vary in how well they work.
- Babesia (IDSA 2020 babesiosis guideline, chaired by Dr. Peter Krause of Yale): PCR detects Babesia better than a blood smear does and is especially useful when the parasite level is low, and Babesia can be missed on thick blood smears. The standard Babesia microti antibody test does not detect Babesia duncani. If a Babesia microti PCR is negative but babesiosis is still suspected, the guideline advises a blood smear or a pan-Babesia PCR.
- Bartonella (ARUP Laboratories, University of Utah, updated 2026): this major reference lab notes that Bartonella antibody tests can have low sensitivity and can cross-react between Bartonella species, that PCR on blood is often not sensitive, and that PCR becomes less sensitive the longer someone has been infected.
- Borrelia miyamotoi (Yale, Pathogens, 2023): this tick-borne relapsing fever infection can cross-react on some Lyme screening tests, but the Lyme Western blot will be negative. Diagnosis requires PCR or a blood smear.
WHAT I'M ASKING
- Please look at my history, symptoms and possible exposure, not just one test result.
- Please don't rule out Lyme because I don't remember a tick bite or never saw a rash.
- Please don't dismiss a positive result because it came from a specialty lab. IGeneX is CLIA-certified and licensed by New York State, and its Lyme ImmunoBlot tests are the foundation of FDA-cleared kits.
- Please use your judgment on which tests fit my symptoms, and remember that a negative test, especially for Bartonella or Babesia, doesn't rule out infection.
- If this isn't an area you treat, please help me find a doctor who does. HHS announced in May 2026 that patients will be able to find ILADS's clinician locator through hhs.gov/lyme. If we see this differently, I'd appreciate your support in getting a second opinion. The AMA Code of Medical Ethics asks doctors who refer a patient or seek a consultation to let the patient know they may seek a second opinion.
- Being believed matters to me. In a Johns Hopkins study of 80 post-treatment Lyme patients, those who felt more dismissed or misunderstood by medical professionals had worse symptoms, lower quality of life and less trust in doctors (Rebman et al., 2024).
- The AMA Principles of Medical Ethics ask every physician to "continue to study, apply, and advance scientific knowledge." I'm asking you to take a fresh look at this science with me.
WHERE THIS RESEARCH COMES FROM
The research in this letter comes from ILADS, the IDSA, AAN and ACR guidelines, the CDC, HHS and its Tick-Borne Disease Working Group, the FDA, the National Academies, the federal AHRQ, the American Medical Association, Johns Hopkins, Stanford, Tulane University, New York Medical College, Geisinger, Tufts University, Yale, Mayo Clinic, Massachusetts General Hospital, Stony Brook University, ARUP Laboratories at the University of Utah, the Bay Area Lyme Foundation's Lyme Disease Biobank, Global Lyme Alliance, LymeDisease.org and IGeneX, plus the laws and medical board policies of 19 states: California, Connecticut, Delaware, Illinois, Iowa, Maine, Maryland, Massachusetts, Minnesota, Missouri, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Texas, Vermont, Virginia and West Virginia.
Thank you for your time, your care and your willingness to learn more about this with me.
Sincerely,
(Your name)
SOURCES
ILADS - Lyme Disease Basics for Providers (updated 2026)
ILADS - Controversies and Challenges in Treating Lyme and Other Tick-Borne Diseases (updated 2026)
IDSA, AAN and ACR - 2020 Guidelines for the Prevention, Diagnosis and Treatment of Lyme Disease (Clinical Infectious Diseases, 2021)
CDC - Lyme Disease (Borrelia burgdorferi) 2022 Case Definition
HHS Tick-Borne Disease Working Group - 2022 Report to Congress
Johns Hopkins and Stanford - Molecular Microbiological and Immune Characterization of a Cohort of Patients Diagnosed with Early Lyme Disease (Journal of Clinical Microbiology, 2020, older source, still worth reading)
Horn et al. - Evaluation of Standard and Modified Two-Tiered Testing Algorithms Using Well-Characterized Early Lyme Disease Samples (Journal of Clinical Microbiology, 2026)
Horn et al. - Lyme Disease Biobank: 10 years of 3 month follow-up visits from 2014 to 2023 (Frontiers in Medicine, 2025)
Rebman et al. - Characteristics of seroconversion and implications for diagnosis of post-treatment Lyme disease syndrome (Clinical Rheumatology, 2015, older source, still worth reading)
Hickman et al., Tufts University - The multiplexed single-tier InBios Lyme Detect Multiplex ELISA is more sensitive than standard two-tier tests in the early stages of Lyme disease (Journal of Clinical Microbiology, 2025)
Ahern et al., Tulane University, Johns Hopkins and Lyme Disease Biobank - Multiplex single-tier LymeSeek test improves sensitivity during the diagnostic gray zone of early Lyme disease (Journal of Clinical Microbiology, 2026)
LymeDisease.org - New data shows LymeSeek can improve detection of early Lyme (October 2026)
Embers et al., Tulane - Variable manifestations, diverse seroreactivity and post-treatment persistence in non-human primates exposed to Borrelia burgdorferi by tick feeding (PLoS One, 2017, older source, still worth reading)
HHS - Secretary Kennedy Convenes Lyme Disease Patients and Providers to Announce New Diagnostic Efforts (December 2025)
Global Lyme Alliance - Lyme Disease Diagnosis (no date shown)
IGeneX - Licenses and Certifications
IGeneX press release - New York State Grants Approval of IGeneX's Newly Developed Lyme ImmunoBlot Tests (Business Wire, August 2018, older source, still worth reading)
IGeneX - FDA Clearance
FDA 510(k) Decision Summary - iDart Lyme IgG ImmunoBlot Kit, K233367 (August 2024)
FDA 510(k) Premarket Notification database - 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
Rhode Island General Laws Section 5-37.5-2, Preamble
Code of Virginia Section 32.1-137.06, Lyme disease test result information
Connecticut General Statutes Section 20-14m
Massachusetts General Laws Chapter 112, Section 12DD
Vermont Board of Medical Practice - Lyme Disease Policy Statement (2014, older source, still worth reading)
IDSA - 2020 Guideline on Diagnosis and Management of Babesiosis (Clinical Infectious Diseases, 2021)
ARUP Consult, University of Utah - Bartonella Infection (updated June 2026)
Burde, Bloch, Kelly and Krause, Yale - Human Borrelia miyamotoi Infection in North America (Pathogens, 2023)
Rebman, Yang and Aucott - Invalidation by Medical Professionals in Post-Treatment Lyme Disease (Scientific Reports, 2024)
HHS - HHS Unveils Sweeping Plan to Combat Lyme Disease and Advance Treatment (May 2026)
American Medical Association - Opinion 1.2.3, Consultation, Referral and Second Opinions
California Business and Professions Code Section 2234.1
Wormser et al., New York Medical College and Tulane - Effect of Borrelia burgdorferi genotype on the sensitivity of C6 and 2-tier testing in North American patients with culture-confirmed Lyme disease (Clinical Infectious Diseases, 2008, older source, still worth reading)
CDC - Updated CDC Recommendation for Serologic Diagnosis of Lyme Disease (MMWR, 2019, older source, still worth reading)
FDA 510(k) Decision Summary - iDart Lyme IgM ImmunoBlot Kit, K242872 (June 2025)
Fagen, Shelton and Luché-Thayer - Medical Gaslighting and Lyme Disease: The Patient Experience (Healthcare, 2023)
National Academies of Sciences, Engineering, and Medicine - Improving Diagnosis in Health Care (2015, older source, still worth reading)
AHRQ Patient Safety Network - Diagnostic Errors (Patient Safety Primer, reviewed 2024)
Hirsch et al., Geisinger and Johns Hopkins - Risk Factors and Outcomes of Treatment Delays in Lyme Disease: A Population-Based Retrospective Cohort Study (Frontiers in Medicine, 2020, older source, still worth reading)
Delaware Code Title 16, Chapter 30N, Lyme Disease Information
Maine Revised Statutes Title 32, Section 3282-B (moves to Section 20155 on January 1, 2027)
Maine Public Law 2013, Chapter 340 (LD 597)
New Hampshire Laws of 2011, Chapter 157 (HB 295)
Pennsylvania Act 83 of 2014, Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention and Treatment Act
Missouri HB 2372 (2026), Missouri Lyme Disease Eradication Act
Illinois Compiled Statutes 225 ILCS 60/22
Iowa Administrative Code 481, Chapter 655
New York Public Health Law Section 230
Rhode Island General Laws Section 5-37.5-3 and 5-37.5-4
New Jersey Statutes 26:2P-1
Connecticut General Statutes Section 38a-492h
Illinois Compiled Statutes 215 ILCS 5/356z.35
Minnesota Statutes Section 62A.265
Rhode Island General Laws Section 27-18-62
West Virginia Code Section 33-6-38
Texas Occupations Code Section 156.059
American Medical Association - AMA Principles of Medical Ethics (revised 2001, still in effect)
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