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Letters from The Medical Community

In 2006 the previous Lyme disease guidelines were issued; then in 2009, the IDSA did a review and concluded they were fine as is and made no changes, despite all the objections from patients and doctors.  In 2016, the guidelines were reviewed again by the IDSA and in 2019 a draft of new guidelines was […]

Persistence of The Lyme Disease Bacterium,Borrelia burgdorferi The following references for persistence of Lyme disease (Lyme borreliosis) are listed alphabetically and chronologically: Aalto A, Sjowall J, Davidsson L, Forsberg P, Smedby O. Brain magnetic resonance imaging does not contribute to the diagnosis of chronic neuroborreliosis. Acta Radiol 2007; 48: 755-762. [white matter hyperintensities or basal […]

Response to Proposed IDSA/AAN/ACR Guidelines, 2019 The IDSA/AAN/ACR guidelines give the illusion that Lyme disease is hard to catch, easy to diagnose, and easy to cure. The party-line message conveys the idea that Lyme disease is practically a non-issue. Any protean, clinical manifestations associated with Lyme disease that remain after 28-days of treatment are attributed […]

General comments on entire draft, pages 2-69, lines 45-1605: Throughout the 2019 draft revised guidelines, an overriding concern is the generation of false positive diagnoses and misattribution of symptoms to Lyme disease. In contrast, there is little, or no concern voiced about the possibility of false negative diagnoses and misattribution of Lyme disease symptoms to […]

Tick bites, prevention, and prophylaxis of Lyme disease – What diagnostic tests should be used following tick bite?, pages 19-20, lines 453-467: It states, “We recommend against testing for B. burgdorferi in an Ixodes tick following a bite”. While true that the presence of a pathogen does not reliably predict the likelihood of clinical infection, there still is valuable information […]

Neurological Lyme disease – For which neurological presentations should patients be tested for Lyme disease?, page 36, lines 840-841: It states that “In patients with cognitive decline the guidelines recommend against routine testing for Lyme disease.” Global Lyme Alliance vehemently disagrees with this statement because it does not take into consideration the extensive evidence in […]

Prolonged symptoms following treatment of Lyme disease, page 61, lines 1412-1419: Reference is made to studies of “patients appropriately diagnosed and treated for Lyme disease” who describe either “persisting or recurrent fatigue, musculoskeletal pain, neurocognitive and other non-specific subjective symptoms”. These are in fact patients clinically defined by Rebman et al. as having PTLDS and yet reference to this […]

Prolonged symptoms following treatment of Lyme disease – Chronic Lyme disease, page 64, lines 1474-1479: It states that “The term ‘chronic Lyme disease’ as currently used lacks an accepted definition for either clinical use or scientific study, and it has not been widely accepted by the medical or scientific community”. Although this statement is correct with […]

Prolonged symptoms following treatment of Lyme disease – Should patients with persistent symptoms following standard treatment of Lyme disease receive additional antibiotics?, pages 62-63, lines 1445-1449 and 1464-1468: Four randomized, controlled trials are cited as evidence against repeated antibiotic treatment (references #317, 321, 319). A careful statistical analysis of the trials and their design calls into question the […]

Inadequacy of tick- bite prophylaxis recommendations: The IDSA recommendation for prophylaxis of Lyme disease are based on a study published in the New England Journal of Medicine in 2001.[i] The study evaluated the efficacy of a single dose of doxycycline for preventing Lyme disease after a tick bite. Endpoints in the study included erythema migrans […]

The following organizations have endorsed the Ad Hoc Patient and Physician Coalition Comments of the IDSA Proposed Lyme Guidelines, August 8, 2019 Bay Area Lyme Foundation Brookfield/Wolfeboro New Hampshire support group Central Massachusetts Lyme Foundation Charles E. Holman Morgellons Disease Foundation Colorado Tick-Borne Disease Awareness Association Florida Lyme Disease Association International Lyme and Associated Diseases […]

How long should a patient with EM be treated? IDSA Draft Guideline Recommendation: “We recommend that patients with EM be treated with either a 10-day course of doxycycline or a 14-day course of amoxicillin, cefuroxime axetil or phenoxymethylpenicillin rather than longer treatment courses (strong recommendation, moderate quality of evidence).” IDSA guidelines recommending a 14-day course […]

Letter regarding the IDSA/AAN/ACR 2019 Draft Lyme Disease Guidelines Lyme and Psychiatric Illness 7/28/2019 As a psychiatrist specializing in infection-associated psychiatric illness I have some concerns about the proposed 2019 draft of Lyme disease guidelines. 1.On the question of should all adult patients with psychiatric illness be tested for Lyme disease the guideline authors recommend […]

Tick borne diseases offers unique health care challenges. Well-written guidelines can offer a unique opportunity to address them. Numbers of tick borne disease cases continue to increase along with missed or late diagnoses and unacceptable levels of treatment failure. By employing root cause analysis, some of these problems can be defined and corrected through guidelines […]

Medicine has never been an exact science and is dependent on research and new discoveries and the incorporation of new and updated clinical and evidence-based information and innovative approaches to treatment for illnesses. (For example we no longer use blood-letting as a form of treatment for “consumption.”) Guidelines written in 2006 for a disease that […]

These guidelines are terribly flawed and I hope that you reconsider. Patients with ALS, MS, dementia, Parkinson’s and sudden seizures may also have Lyme and TBDs and should be tested and treated if the test is positive. A month of abx. has been in the guidelines for years. One doxycycline pill will have no effect at […]

To the IDSA, AAN and ACR regarding the proposed Lyme disease guidelines I’ve reviewed the draft of the new Lyme disease guidelines. I am struck by a few things On page 6 the draft states “Abstracts and conference proceedings, letters to the editor, editorials, review articles, and unpublished data were excluded. The panel made an […]