In September, 2018 the Vermont Department of Health posted a webinar to help health care providers learn about the diagnosis and treatment of tick-borne diseases in Vermont. In our mission to provide Vermonters with accurate, equitable information about Lyme and TBDs in our state, this article by VTLyme.org highlights important information included in the VDH webinar, along with additional information and resources especially regarding the diagnosis and treatment of Lyme disease.
The Objectives of the VDH course are listed as: “1. Review the epidemiology of tickborne diseases in Vermont, 2. Define the symptoms of Lyme diseases, anaplasmosis, babesiosis and Borrelia miyamotoi infections, 3. Identify tests used to diagnose tickborne diseases common in Vermont, 4. Describe the appropriate use of antibiotics in treating Lyme diseases, anaplasmosis, babesiosis and Borrelia miyamotoi infections.” A health care provider can earn Continuing Education credits for viewing the webinar by completing a short test and submitting a form to AHEC. The webinar is available with audio on YouTube and as a separate slideshow.
The webinar was uploaded on September 20, 2018. As of September 3, 2019 it had 160 views. There are no comments on the webinar because comments are disabled. There is no way to know what percentage of the 160 views are by health care providers in Vermont, but AHEC confirmed that, as of September 5, 2019, six health care providers earned CE credits by submitting the short test. Four of these were CME, and two were nursing credits.
COURSE OBJECTIVE #1: Epidemiology
The review of the epidemiology of tickborne diseases (TBDs) by Bradley Tompkins (formerly of the VDH) is thorough and offers information about the increasing incidence of TBDs, disease trends in Vermont, locations where Vermonters are most at risk for being infected, and how the lifecycle of ixodes scapularis (the black-legged tick) affects TBD infections in our state. It includes information about Lyme disease and other TBDs present in Vermont including Anaplasmosis, Babesiosis, Borrelia miyamotoi, and Powassan Virus Disease.
Additional information about Erlichiosis
- The VDH website currently says, “The lone star tick, Amblyomma americanum, is the tick primarily responsible for transmitting Ehrlichia…. The presence of the tick has been documented in all the states around Vermont, but never in Vermont itself.”
- This statement contradicts the VDH’s “Project Lone Star” which has reported the presence of Lone Star Ticks in Vermont. The VDH’s Tick Tracker also documented the presence of Lone Star ticks in several Vermont counties since 2014.
- This data suggests that Erlichiosis should probably be mentioned in health provider education resources along with other diseases related to the Lone Star tick such as red meat allergy, and Southern Tick Associated Rash Illness (STARI), especially since the CDC refers to the Lone Star as “a very aggressive tick”. Bradley Tompkins mentions specifically (0:24) that the webinar focuses on “tickborne diseases that can be transmitted in Vermont” and, based on available data about the presence of the Lone Star tick in Vermont, health care providers should be informed about diseases transmitted by this tick.
Why this is important: Vermont Heath care providers must have a thorough understanding of the expanding presence of new ticks in Vermont, along with species-specific diseases.
COURSE OBJECTIVE #2: Symptoms
Dr. Jean Dejace (UVM Medical Center) presents a range of Lyme disease symptoms, explaining the differences between early and disseminated Lyme disease. Dr. Marie J. George (Southwestern Vermont Healthcare and Medical Center) discusses symptoms of Anaplasmosis, Babesiosis, and Borrelia miyamotoi.
Additional information about the Erythema Migrans rash in Lyme disease
Dr. Dejace’s presentation included important information about atypical EM rashes in Lyme disease with link to excellent reference images.
- Dr. Dejace says (8:15) that “diagnosis of early localized Lyme disease is predominately clinical based on the appearance of an erythema migrans rash”. This could be misunderstood as the rash being a requirement for clinical diagnosis.
- Dr. Dejace continues, “the rash is present in about 75% of cases” however the VDH 2016 Tickborne Disease Annual Report showed EM rashes in confirmed Lyme disease cases in Vermont have been steadily decreasing, with the most recent published total being closer to 60%.
- Symptom data was not included the 2017 VDH report, but the 75% EM rate that Dr. Dejace refers to could be an average mentioned in that report, “During 2005–2017, more than 70% of Vermonters with confirmed cases of Lyme disease developed an erythema migrans (EM) rash.” This average over 12 years does not inform Vermont health care providers of the more recent trend of decreasing incidence of EM rash in Vermonters with confirmed Lyme disease.
- The 2017 report states, “Other symptoms of Lyme disease, such as fever, chills, headache, fatigue and muscle and joint aches may occur with or without an EM rash.” But in the webinar Dr. Dejace states (8:57) “In addition to erythema migrans, patients with early Lyme may develop systemic symptoms…” Again, this could result in a misunderstanding by some health care providers that an EM rash is required for a Lyme disease diagnosis.
- Dr. Dejace (9:37) does talk about “situations of diagnostic uncertainty.” In this context, it would be important for health care providers to know more about the increasing need to diagnose Lyme disease without an EM, and that early or prophylactic antibiotic treatment may cause infected patients to test negative in later blood tests.
- The first of the 5 questions on the post test asks about treatment in the presence of an EM rash, but the more difficult diagnosis in the absence of a rash is not addressed by this test.
Why this is important: It is agreed upon in the medical community that early diagnosis and treatment of Lyme disease reduces the chance of long-term complications and adverse impacts on a patient’s health. To ensure early diagnosis, Vermont health care providers must be knowledgeable about the less traditional presentations of acute Lyme disease, and the importance of clinical diagnosis in the absence of am EM rash, especially as VDH data shows the incidence of EM in Vermonters with confirmed Lyme disease is decreasing.
Additional information about the stages of disseminated Lyme disease
Dr. Dejace reviews symptoms and presentation of early disseminated Lyme disease (10:20) in three categories: skin, cardiac and neurologic. Late disease is also reviewed (12:40) with a sole focus on the arthritic presentation of late disseminated Lyme disease.
- According to the CDC, in addition to symptoms listed by Dr. Dejace, symptoms of disseminated Lyme disease may also include: “heart palpitations, episodes of dizziness or shortness of breath, inflammation of the brain and spinal cord, nerve pain, and shooting pains, numbness, or tingling in the hands or feet.” According the the VDH website, in addition to the cranial neuropathy, radiculopathy and meningitis mentioned by Dr. Dejace (12:00), disseminated Lyme disease may present with “cognitive impairment, encephalopathy, and pain that comes and goes in muscles, bones and tendons.”
- Dr. Dejace notes that disseminated Lyme disease most commonly occurs “weeks to months after infection” (10:32). The VDH website says “Watch for symptoms of tickborne illness for three days to 30 days after a tick bite” and a VDH press release reads, “Symptoms may begin as soon as three days after a tick bite, but can appear as long as 30 days after”. The incongruity in messages from the VDH about the timing of symptoms may be confusing to both providers and patients in Vermont.
- The emphasis on laboratory testing procedures for Lyme disease in the webinar does not make clear the CDC’s recommendation that Lyme disease be diagnosed “based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks” along with the results of laboratory test results in patient assessment when indicated. Dr. Dejace does say issues with lab testing are “why clinical diagnosis is important” but the webinar does not offer health care providers comprehensive guidelines for clinical diagnosis.
Why this is important: Manifestations of disseminated Lyme disease can occur days to years after infection, and late disseminated Lyme disease may present with different symptoms than the arthritic presentation Dr. Dejace describes in the webinar. Health care providers in Vermont should be made aware that additional symptoms mentioned above, or even issues like sudden onset anxiety, sleep disorders or cognitive changes, may be related to disseminated Lyme disease or other tickborne diseases.
Because Vermont is an endemic state with one of the highest Lyme disease rates in the USA, Vermont health care providers should know that disseminated Lyme disease may have a cognitive or psychiatric presentation. This requires providers to look past some symptoms to address underlying disease. For example, in the study of three cardiac deaths Dr. Dejace refers to (11:05) in the webinar, one patient had been diagnosed with anxiety just before his death, “The patient had complained of episodic shortness of breath and anxiety during the 7–10 days before death. No rash, arthralgia, or neurologic symptoms were noted. A physician consulted 1 day before death prescribed clonazepam for anxiety.”
Health care providers should be trained to consider a range of symptoms, medical and mental health histories, and patients’ likelihood of tick exposure in Vermont to rule out a tick-borne disease diagnosis. Chronic, non-specific symptoms are covered in the webinar (20:00) but only in the context of Post Treatment Lyme Disease Syndrome, not as an aspect of clinical diagnosis.
COURSE OBJECTIVE #3: Testing
Dr. Dejace does a thorough review of two-tiered Lyme testing (4:38), and Dr. Marie J. George covers Anaplasmosis, Babesiosis and Borrelia miyamotoi. Beyond the objective of ‘identifying tests used to diagnose tick-borne diseases’, different symptoms and presentations of TBDs in Vermont are covered. Dr. George discusses tests used to diagnose Anaplasmosis, Babesiosis and Borrelia miyamotoi. Regarding Lyme disease testing, Dr. Dejace notes (26:40) that “even the best Lyme testing is imperfect and should be interpreted in the context of the patient’s clinical presentation.”
Additional information about testing for Lyme disease
A 2018 paper in the Oxford Academic Journal Clinical Infectious Diseases states, “The 1994 serodiagnostic testing guidelines predated a full understanding of key burgdorferi antigens and have a number of shortcomings. These serologic tests cannot distinguish active infection, past infection, or reinfection.” Dr. Dejace covers (5:50) these issues in the webinar and reminds providers that is “why clinical diagnosis is important.”
- Dr. Dejace included research papers to support his ideas about the accuracy of current testing protocols, however this research does not accurately reflect Lyme disease presentation and testing in Vermont.
- A paper (7:31) referenced by Dr. Dejace regarding his skepticism of commercial labs specializing in the diagnosis of Lyme disease (7:20) actually notes that “there was surprisingly little difference among the laboratories in percentage of positive results on most assays using CDC criteria”. There was “interlaboratory variability” noted as a problem, causing the authors to conclude, “In light of the relatively high level of discordance among laboratories, some clinicians may consider sending patient serum samples to a second laboratory if a case of LD is highly suspected but not confirmed by initial testing.” The positive results by one lab Dr. Dejace refers to in his lecture are a result of that lab using unvalidated criteria that was different from the CDC’s.
- Dr. Dejace mentions (7:16) that identifying positive IGM bands on a Western Blot can be “particularly troublesome” and references a paper titled “High frequency of false positive IgM immunoblots for Borrelia burgdorferi in Clinical Practice.” But the criteria used by researchers in this paper is questionable. For example, researchers “assumed that positive IgM immunoblot test results occurring during the winter were most likely to be false positive” because subjects “were regarded as having essentially no tick exposure because they were tested during the winter months”.
Why this is important: While Dr. Dejace states that testing for Lyme disease is imperfect, the webinar references several studies to support the use of current methods instead of highlighting the need for Vermont’s health care providers to thoroughly understand the nuances of Lyme disease testing, and clinical diagnosis as recommended by the CDC. The presentation of these studies in the webinar does not indicate the extent of current problems with Lyme disease testing, which may be confusing to Vermont providers.
COURSE OBJECTIVE #4: Appropriate Antibiotic Treatment
Dr. George covers the treatment of Anaplasmosis (28:36), Babesiosis (38:38) and Borrelia miyamotoi (49:09). Dr. Dejace notes that the standard doxycycline treatment for Lyme disease also treats Anaplasmosis. This webinar gives Vermont providers information about tickborne diseases that are emerging in Vermont in addition to Lyme disease.
Additional information about prophylactic treatment for Lyme disease
- Dr. Dejace reviews prophylactic treatment (14:00) for Lyme disease after a tick bite. He shares that this guideline is based on a single study where the primary outcome is the development of an erythema migrans (EM) rash. Dr. Dejace notes that EM is “an imperfect measure” of whether a person is infected with Lyme disease. Dr. Dejace does explain that other tick-borne diseases are not prevented by prophylactic doxycycline.
- Dr. Dejace’s notes on this topic in the slideshow (#34) say, “Largest study on this topic by far. Other smaller ones are in the Discussion section. The others found no benefit.” Dr. Dejace does not mention this lack of supporting evidence for prophylactic doxycycline in the webinar.
- VTLyme.org has written about other concerns regarding prophylactic treatment. For example, the duration of the study was only 6 weeks while the VDH and CDC say Lyme disease symptoms can present weeks, months, or years after infection.
- It is not explained to providers on this webinar that, according to the CDC, prophylactic treatment with doxycycline may cause a person to test negative in blood tests even if they are infected with Lyme disease. This is important information for Vermont health care providers considering testing as part of a patient’s assessment and diagnosis.
Why this is important: Vermonters need to know that prophylactic treatment is not a guarantee they will not get Lyme disease. Providers who prescribe prophylactic treatment should know about the limited research this recommendation is based on, educate patients about the symptoms of Lyme disease, and consider scheduling follow up appointments. Providers should be aware of the impact prophylactic treatment could have on the results of further blood tests.
Additional information about patient outcomes
Dr. Dejace shares several notable studies as part of “a substantial amount of evidence for good clinical outcomes” (16:17). One important consideration is that these studies may not reflect the diagnostic circumstances, treatment timing, or outcomes of Vermont’s population being treated for Lyme disease.
- Both the Luger study (1995) and the (2003) Wormser study included only patients with physician-documented erythema migrans. Therefore, patients in these studies received early diagnosis and treatment. As discussed previously, not all Vermont Lyme patients present with an EM, or are diagnosed and treated early in their illness.
- The 2015 Wormser study measuring Quality of Life was also limited to patients who had a confirmed Lyme EM. The study authors acknowledged a “limitation of our study is that it was not directed at patients with extracutaneous manifestations of Lyme disease.” In addition, 283 patients were recruited for the study but only 100 of these returned to fill out the Quality of Life Surveys throughout the duration of the study. The authors noted, “there was a significant difference in the number of baseline symptoms” between subjects who continued their participation in the study and those (with more symptoms) who did not. One could surmise that patients with more difficulties related to their illness would be less likely to continue their participation in the study, and therefore it is possible the 183 patients who did not return to complete the study could have been statistically significant in determining post-treatment Quality of Life. In addition to acknowledging this issue, the authors also noted that “Data from certain European studies have suggested that impairment in health-related quality of life may occur as a consequence of neurologic Lyme disease specifically.” (Neurologic disease being a different circumstance than the acute EM presentation of subjects in this study.)
- The Kowalski study (2001) included only patients with an EM or positive lab results. The study measured ‘treatment failure’, and defined ‘treatment failure’ as “a patient developing persistent erythema migrans despite antibiotic therapy”, or objective clinical and laboratory findings of progressive Lyme disease “not present on initial diagnosis.” In addition, “Patients who developed a second episode characterized by erythema migrans skin lesion(s) during a subsequent tick season were considered to have a reinfection not treatment failure.” Both the subjects and the criteria in this study could be seen as limited in a way that does not reflect the full scope of Lyme disease presentations or treatment outcomes in Vermont, or the possibility that some discounted symptoms could have represented disease progression, not reinfection.
- Finally, these studies of Lyme disease that was diagnosed and treated early still had up to 10% treatment failure rates. Again, early diagnosis and treatment results in a positive outcome in the vast majority of patients, but Vermont providers should know to follow up with Lyme disease patients (who will range from the early, acute illness in the studies presented by Dr. Dejace, to late, disseminated disease), and inform them about the possibility of treatment failure.
Why this is important: Dr. Dejace’s statement “We saw that the overwhelming majority of patients do well with standard treatment” (19:30) is based on studies where patients had documented EM, and were diagnosed and treated early in their illness. These studies were also based on limited criteria for “treatment outcomes”. It is important for Vermont providers to understand that the patients represented in these studies do not accurately reflect Vermonters’ diverse presentations of Lyme disease, or different timings of diagnosis and treatment.
Additional information about Post Treatment Lyme Disease Syndrome (PTLDS)
Dr. Dejace briefly discusses symptoms of PTLDS in a “minority of patients”, with a focus on prescription of longer term antibiotics as a treatment for PTLDS. He also notes that symptom resolution after Lyme disease treatment may take weeks to months (19:45).
- Dr. Dejace cites a study by Nowakowski as an example of a “subset of patients, perhaps 10%, who develop persistent subjective complaints (PTLDS).” But, like the studies mentioned previously, this study included only patients with EM and “All patients were treated with antibiotics at the time of diagnosis.” Dr. Dejace notes (19:40) “none developed objective findings of late Lyme disease” but it is important for providers to understand the likely relevance of these patients’ early diagnosis and treatment to their outcomes in this study.
Why this is important: Studies of treatment outcomes can be skewed by only including patients with an EM rash who have received early diagnosis and treatment. These outcomes do not reflect a substantial part of the general population in Vermont who may not present with a rash, get an early diagnosis, or early treatment for their illness.
Most patients with EM who get treated right away do have good outcomes, but the way this study is presented can misguide providers about potential long term outcomes, including chances for developing PTLDS, in patients with delayed diagnosis, disseminated disease, or delayed treatment.
Additional information about longer-term antibiotic treatment
Dr. Dejace also discusses longer term antibiotic treatment for Lyme disease. While he represents a common view, his statement that “there is a strong consensus within the medical community regarding antibiotic therapy” (21:33) does not accurately represent the ongoing research, discussion, and debate by physicians regarding the treatment of Lyme and TBDs. Dr. Dejace covers three indications for IV therapy (19:19) and the possible need for extended antibiotic treatment of Lyme arthritis (18:35).
- Dr. Dejace lists 4 notable randomized human trials (22:05) “regarding prolonged antibiotics for Lyme” and stated “All reached similar conclusions.” However, the studies have too many variables to be accurately referred to as reaching “similar conclusions”
- For example, one study by Wormser (2003) compared the difference between 10 and 20 days of doxycycline while a second study compared three months of IV oral antibiotics with placebos. A third study gave all patients IV ceftriaxone for two weeks, and then continued with three months of oral antibiotics or placebo. (This study was done in Europe where Borrelia strains that cause Lyme disease are different, and according to the authors have “different clinical manifestations“, than those in the USA and Vermont.)
Why this is important: Presenting these extremely diverse research studies as confirming a consensus about longer term antibiotic treatment for Lyme disease could be confusing to Vermont health care providers. It is important for Vermonters, and their providers, to understand that the treatment of Lyme disease is an emerging science, not one that has been settled by extensive, cohesive research.
Additional information about the misdiagnosis of Lyme disease
- Dr. Dejace mentions a paper describing 3 cases where significant illness was misdiagnosed as Lyme disease (26:27). He does not mention that there is also formal documentation of Lyme disease being misdiagnosed as Juvenile Rheumatoid Arthritis, cellulitis, multiple sclerosis, polymyalgia rheumatica, or as sports related injuries.
Why this is important: Vermonters and their health care providers should be provided with equitable information about the diagnosis and treatment of Lyme disease. There are multiple physician documented cases of serious illnesses mistakenly diagnosed as Lyme disease, and also of Lyme disease misdiagnosed as another illness. In both cases comprehensive physician education would reduce incidence of misdiagnosis.
Tickborne diseases have a significant impact on Vermonters. Vermont is often first or second in the USA for incidence of Lyme disease, other tickborne diseases are on the rise in Vermont, and a new tick species is in the process of establishing itself in our state.
It is commendable that the VDH has offered this webinar to help Vermont’s health care providers better diagnose and treat tickborne diseases. This article highlights the need for additional, thorough, and equitable information regarding the clinical diagnosis and effective treatment of Lyme disease.
Vermonters and their health care providers should be provided with information that accurately reflects disease presentation and progression in our state, and the full spectrum of potential treatment outcomes. It is not made clear to providers watching the webinar that the patient subjects in the studies referenced by Dr. Dejace do not reflect the circumstances of many Vermonters with Lyme disease, and the treatment studies are far too diverse to be fairly presented as reaching “similar conclusions”. Vermonters and their health care providers deserve to understand that there are a range of professional opinions about the treatment of Lyme and tickborne diseases (not a “strong consensus within the medical community” as Dr. Dejace says) so they can make truly well-informed decisions about their health care. This is especially true as the well-established controversy in the medical community about Lyme disease creates opportunities for frauds and con-artists to prey on the needs of vulnerable Vermonters who are ill.
Truly equitable information about Lyme and tickborne diseases would acknowledge that we don’t know what we don’t know. That being said, there is enough we do know about tick-borne disease to provide a basis for standard care. One could question if the 5 question post test providing CE credits ensures Vermonts’ health care providers are adequately trained in the objectives of this webinar; of critical importance in an endemic state where children ages 5-14 are at highest risk for Lyme disease.
Vermonters and their health care providers need comprehensive education about Lyme and tickborne diseases. They should have accurate and up-to-date information about disease presentation in Vermont. Providers should be trained to understand potential problems with blood tests for Lyme disease, and be able to make a clinical diagnosis. Additional presentations of disseminated Lyme disease, like those listed on the VDH and CDC websites, should be included in the webinar. Providers should be trained to recognize psychiatric and cognitive manifestations of tickborne diseases, along with behavioral and other unique presentations of pediatric tickborne illness in Vermont’s children.
When we give Vermonters and their health care providers access to thorough and equitable information, we empower them to use their training, expertise, and experience to make informed and individualized health care decisions that benefit Vermonters affected by tickborne diseases, their families, their employers, and their communities.