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                              October 27, 2020, TBDWG Meeting (online)
                              TBDWG October 27, 2020 - Written Public Comment


    

    

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TBDWG October 27, 2020 - Written Public Comment








  
  
    

  
      





*This webpage  displays the written comments received by the Tick-Borne Disease Working Group  for the October 2020 meeting. The opinions expressed in each comment displayed  on this webpage belong solely to the author of the comment and do not  necessarily reflect the opinions of the Department of Health and Human Services  (HHS) or the Tick-Borne Disease Working Group. Any information provided in the  comments displayed on this page has not been verified by HHS.*
	  Anonymous 
  To the tick-borne disease working group:I’ve been watching this process since the beginning. I  thought you were off to a good start with your first report. You were a pretty  cooperative group - passionate, but willing to make a few concessions and find  common ground. Remarkable for the Lyme world!Certain 2020 members, on the other hand, have soured  the entire process. They’ve done nothing but argue, and we -the public- have  watched them become more and more stuck in their own agendas. At each meeting,  it’s the same people talking, saying all the same things, over and over and  over again. It’s no wonder no one else wants to speak -they’re afraid to get  attacked! Or have to listen to someone go on another tirade!Those “arguers” -**on  both sides of the issue**- **are** the  Lyme Wars. They keep us all divided with their offensive statements and rude  tone. They’re destroying any trust there ever was with their childish behavior.  Aren’t we ready for a new conversation? One that actually moves us forward -out  of the last century? It’s time for those people to step aside and allow some  fresh perspectives into that group.It’s clear that the “arguers” of the group are losing  sight of what’s important: the patient. They’ve gotten political. And they’re  rigid thinkers -they're completely unwilling to compromise or listen to each  other. Their egos have gotten in the way.And, guess what. The next report is going to stink  because of it. Are you going to fill it with minority opinions? What is  congress going to think about that? They’re going to see the complete lack of  agreement and wonder how that poor excuse of a report arrived on their desks.  I'm sorry, but all I can say is grow up! Don’t blow this opportunity to help  patients and save lives.The most recent working group meetings have been  embarrassing to watch. Why on earth are you editing chapters in front of a live  audience?! And weren’t you all supposed to be done by now? I see you’ve tacked  on several more meetings, so you can continue your bickering. If this isn’t a waste  of taxpayer money, I don’t know what is.Anonymous in New York(I might’ve signed my name if I thought you were a  nicer group of people.)
Central New York Lyme and  Tick-Borne Disease Alliance
Statement  to Tick-Borne Disease Working Group“Mystery”  - a frequent word in discussions about Lyme disease. Solutions are elusive,  practitioners are divided and patients suffer ongoing debilitating symptoms.There  are two schools of thought about and approaches to the disease - IDSA  (Infectious Diseases Society of America) and ILADS (International Lyme and  Associated Diseases Society) - and we are proud to have representatives of both  on the board of the Central New York Lyme and Tick-Borne Disease Alliance. They  inform us and talk with, share ideas with and learn from each other. While  mysteries of the disease persist, our doctors are just as persistent in  pursuing solutions.The  federal Tick-Borne Disease Working Group, preparing a report to Congress, has  developed recommendations approved by the committee, including those “educating  doctors and the public, as well as the issue of patient access to care.” While  the recommendations have been approved, there is still debate and contentious  language about Post-Treatment Lyme Disease Syndrome (PTLDS), aka “persistent Lyme” and “chronic  Lyme” - phrases describing unrelenting, devastating symptoms.“We  see too many patients who have lingering symptoms after their diagnosis and  treatment for Lyme disease and associated tick-borne illness. This same pattern  is showing up among patients with COVID-19. In order to better understand the  multitude of physical, neurological and sleep issues that develop after Lyme we  need better funding and research to help understand the chronic conditions that  develop.” - Kristopher Paolino, MD, MTM&H, FACP****“Lyme disease and associated  coinfections can present with some of the most complex and debilitating  symptoms that can affect virtually any functional and anatomic system of the  human body, either following treatment of an acute tick bite, or without a  known bite. Breakthroughs in diagnosis and treatment can only emerge with a  melding of IDSA and ILADS guidelines, strong funding and research as well as  practitioner education using merged guidelines and embracing an integrative  approach to care. Importantly, the first step in healing is practitioner  acknowledgement of the realness of the patient’s symptoms and any experience of  suffering.” - Heidi Puc, MD, FACP, ABIHMWe also note that Allen Steere,  MD, a leading practitioner in the world of tick-borne disease and former  colleague of TBDWG member Eugene Shapiro, MD, has reversed his position, and  unlike Dr. Shapiro, is now able to recognize a symptom complex experienced by  some patients after treatment for acute Lyme Disease, and by some even without  such preceding Lyme Disease treatment, and he has validated that these cases  are real. He opens the door to a needed conversation and investigation about  cause and treatment, whereas Dr. Shapiro keeps the door chain fastened as he  searches for a deadbolt lock. It is our feeling that a dialogue needs to be  continued, not dismissed:“*The clinical features and pathogenesis of  what is often called post treatment Lyme disease syndrome (PTLDS) are quite  different. After any disease manifestation, but perhaps more commonly following  neurologic involvement, patients may experience pain, neurocognitive, or  fatigue symptoms, emerging during or within several months after antibiotic  treatment of the infection, lasting months or years. These patients may have  severe pain around joints (tender points), headache, brain fog, sleep disorder,  and incapacitating fatigue, which have a major impact on the quality of life.  Such symptoms may also follow certain other infections or physical or emotional  trauma, or the precipitating events may not be apparent. PTLDS or “chronic Lyme  disease” has become a diagnosis for this type of syndrome not only in patients  with recent Lyme disease but also in those who have little or no evidence of  previous Lyme disease.*” - *The Journal  of Clinical Investigation*, April 13, 2020As these discussions continue, we  urge a full-speed-ahead collaborative resolution. There is no room for bitter  contention as patients suffer dire consequences of “there is no answer yet.”Approved  by Board of Directors, October 15, 2020
Infectious Diseases Society of  America
The Infectious Diseases Society of  America (IDSA) appreciates the opportunity to submit comments to the Tick-Borne  Disease Working Group. IDSA is the largest infectious diseases medical society  in the United States, representing more than 12,000 physicians, scientists,  public health practitioners and other health care providers specializing in  infectious diseases. Our members care for patients of all ages with serious  infections, including tick-borne diseases. IDSA is committed to ensuring that  patients receive the highest quality care for infectious diseases, including  Lyme disease. Society members focus on the epidemiology, diagnosis,  investigation, prevention, and treatment of infectious diseases in the U.S. and  abroad.We have great sympathy for  patients and their loved ones who suffer from both short- and long-term effects  of Lyme disease or other conditions. Our goal is for all patients to achieve  the best possible outcomes.IDSA comments below reflect our  understanding of the Working Group's draft report's contents based upon the  discussion at the Sep. 15 and Sep. 22 meetings. IDSA is pleased that some of  the draft report's chapters offer important recommendations to strengthen the  federal response to tick-borne diseases. We welcome the opportunity for ongoing  dialogue with the Working Group to help ensure that its recommendations are  grounded in the best available scientific evidence, and best serve patients'  interests and public health.**Chapter 1: Background**IDSA agrees with and supports the decision to remove the epidemic  classification of tick-borne diseases from this chapter, though they remain  concerning. IDSA also supports more accurately referencing vectors of the  alpha-gal syndrome as tick and chigger bites instead of including all possible  vectors.**Chapter 2: Methods**IDSA supports the Working Group's determination to reflect the  need for continued funding for additional research efforts at the National  Institutes of Health, including research funded by the National Institute of  Allergy and Infectious Diseases, in the chapter's text. IDSA also agrees with  removing key themes from the public comment from this chapter.**Chapter 3:  Tick Biology, Ecology, and Control**IDSA  supports the inclusion of the CDC-led effort that resulted in the discovery and  Environmental Protection Agency registration of nootkatone to repel and kill  ticks. This discovery is an important reflection of interagency collaboration  on a One Health approach to managing ticks and mitigating tick-borne diseases.  We also suggest including the recently-released *National  Public Health Framework for Vector-Borne Disease Prevention and Control in  Humans*,  a collaborative effort across HHS, USDA, DoD, DOI, DHS and EPA to address the  growing threat of vector-borne diseases in the U.S.**Chapter 4:  Clinical Manifestations, Diagnosis, and Diagnostics**IDSA continues to advocate for utilizing the best available  scientific evidence and its inclusion in the final report. A substantial  proportion of patients who have had Lyme disease remain seropositive for  decades after the successful treatment of Lyme disease. Confusion often arises  when non-specific symptoms prompt serologic testing or re-testing for *Borrelia burgdorferi.*Either EIA values  or IgM or IgG immunoblot bands are interpreted as a new or persistent infection  instead of merely reflecting past disease. Despite language incorporated on  testing reports, communication of positive or negative results requires  clinical interpretation. While we recognize debate on this subject, we request  that any proposed new language reflects the best available data. Misdiagnosis  based on serology points to the need for improved education regarding Lyme  disease diagnosis both when clinicians are faced with objective as well as  subjective symptoms. Improvements in diagnostic approaches for Lyme disease are  also needed, especially direct assays that accurately detect the bacterial  organism's presence.**Chapter 5: Causes, Pathogenesis, and Pathophysiology**IDSA agrees with removing the  table that listed tick-borne diseases and their primary pathogens, tick  species, modes of transmission, pathogenesis and pathophysiology, and that any  information should only be included in the final report if it can be presented  accurately. We also support the suggestion to ensure language is consistent  throughout the report.**Chapter 6: Treatment******IDSA supports removing a table  that listed current treatment options for tick-borne diseases and agrees that  the information may not be relevant to the target audience. We also urge using  the most recent and accurate data to support any information included in the  final report, including the fatality rate of Rocky Mountain spotted fever.**Chapter 7: Clinician and Public Education, Patient Access to Care**IDSA supports using a range of  percentages to reflect accurate information from several studies on patients  with persistent symptoms after a Lyme disease infection. We also find the use  of patient registry statistics problematic due to their self-reported nature  and agree that language should be added to describe the methods used to create  the patient registry as well as the limitations.IDSA urges the Working Group to  ensure that any information included in the final report is accurately  presented, particularly concerning the table that compares IDSA and ILADS  guidelines for Lyme disease treatment. IDSA guidelines are focused on clinical  (not research-oriented) diagnosis, treatment and management of infectious  diseases. They are intended to assist practitioners and patients in health care  decision-making and aim to promote – not limit – shared decision making. Based  on a systematic review of the literature, IDSA guideline recommendations are  developed using a robust methodological process that ensures rigor and  transparency and minimizes bias. They seek to provide evidence-based  recommendations to assess the benefits versus harms of treatment options from a  patient-important outcome perspective.We are troubled by the apparent  bias in presenting these guidelines in the draft report and request that both  sets of included guidelines include a reference to their respective  publications. IDSA is currently working with the American College of  Rheumatology, the American Academy of Neurology and representatives from an  additional 12 medical/scientific specialty societies and patient  representatives to finalize new joint guidelines, which IDSA plans to release  before the end of the year. They address not only treatment but also prevention  and diagnosis and complications from neurologic, cardiac and rheumatic  symptoms, among other issues.**Chapter 8: Epidemiology and Surveillance**IDSA agrees  that the inclusion of other transmission examples outside of tick bites would  be problematic considering the lack of existing evidence to support such  concepts. We also agree that additional research is needed to test these  hypotheses.We are  concerned that references to IDSA's guidelines for Lyme disease treatment are  being removed from the report. While we agree that links to the most relevant  information on tick surveillance from CDC should be included, we are concerned  that accurate, evidence-based treatment guidelines are being removed due to  apparent bias.**Conclusion**IDSA thanks the Working Group for its attention to tick-borne diseases  and looks forward to the opportunity to help inform and advance evidence-based  policy that will best serve patients and public health overall.
Robin L. Generaux
Your strategy is to do NOTHING!  You pay fake "scientists" to do your dirty work. You have no  intention of helping anyone in the Lyme Disease community. You think the  "acute" stage is important? A couple of weeks of Doxycycline and all  is good! You completely ignore the effects of long term Lyme sufferers and  focus on your made-up statistics. Your "diagnostic" tests are more  than 71% unreliable. And to keep referring to your CDC website is such an  insult. If the CDC ever had any intention of being of any use, they would have  real scientists, and real doctors treating this devastating illness. But  instead, you pay [redacted] like [redacted], et al. to gladly give you false  information. You have had enough time to fix this and yet refuse to do anything  positive. The CDC almost went apoplectic over a few kids dying from vaping! Oh,  the horror! Yet lives are being destroyed by this sickening disease and not  only do you not fund truthful research, but you are also complicit in having  physicians lose their medical license if they dare treat long term Lyme.Robin L. Generaux, Ph.D, CRC
Laura Hovind
We allege conspiracy between pharmaceutical companies,  academic researchers, nonprofit organizations and government employees in a  scheme to falsify the diagnostic standard for Lyme disease such that vaccines  could be falsely validated but most victims would be prevented from obtaining  diagnosis or treatment.
  In the 1980s it was observed that Lyme disease  manifestations were “protean,” ranging from a simple arthritic knee to severe  neurologic disease. The high antibody responders tended to have an arthritic  knee, and the low antibody responders tended to be very ill.
  The CDC discussed this issue in its “Lyme  Disease Surveillance Summary,” Volume 2, No. 1, January 25, 1991:  “When the overall proportion of positive  tests was used as the outcome variable, donors who met the Lyme disease case  definition were less likely to be seropositive than were donors who did not  meet the case definition....Regression analysis did, however, show an  association between overall seropositivity and donors with arthritis when  adjusted for the presence of erythema migrans and time from onset of illness to  collection of serum sample.”
  Allen Steere, one of the discoverers of Lyme  disease, confirmed the phenomenon and reported a genetic correlation with those  two outcomes in his 1993 report, Association of treatment-resistant chronic  Lyme arthritis with HLA-DR4 and antibody reactivity to OspA and OspB of  Borrelia burgdorferi. “When single serum samples from 80 patients with Lyme  arthritis were tested, 57 (71%) showed antibody reactivity to recombinant Osp  proteins; in contrast, none of 43 patients who had erythema migrans or Lyme  meningitis (P < 0.00001) and 1 of 5 patients who had chronic  neuroborreliosis but who never had arthritis (P = 0.03) showed antibody  reactivity to these proteins.”
  In 1994 there were three companies competing  to bring the first Lyme vaccine to market. They could not conduct phase III  trials with the existing diagnostics due to the high rate of false negatives.  Reliable testing was necessary to identify cases of vaccine failure, and  thereby characterize the efficacy of the vaccines.
  Knowing that “Lyme arthritis” cases were most  likely to produce antibodies, these companies and their co-conspirators  conducted a series of meetings under cover of government agencies to narrow the  case definition of Lyme disease to “Lyme arthritis.” This would ensure that  even if 100% of trial participants contracted Lyme disease, only a small  minority would be able to test positive, making the vaccine seem effective.
  The disease definition was falsified by  implementing a “two-tier” diagnostic scheme consisting of a first-tier “ELISA”  test followed by a second-tier “Western blot” test if positive or borderline.  This scheme ensured only cases with high antibodies were considered positive,  knowingly excluding the vast majority who are sicker.
  The CDC then established a “serum repository”  of “well-characterized” samples and solicited high-antibody samples to populate  the repository. These samples are screened using the two-tier methodology.
  The CDC serum repository is used by  manufacturers to validate diagnostic test kits submitted for clearance to the  FDA. It ensures all new tests adhere to the definition of Lyme as arthritis  only.
  [redacted] is a researcher at New York Medical  College [redacted]. He was lead trial administrator for one of the Lyme vaccines,  for which he was sued by injured patients. His colleague at NYMC, [redacted],  participated in the CDC proceedings to falsify the diagnostics.
  Gary Wormser has received federal grant  funding to provide serum samples to the CDC’s repository.
  [redacted] serves as a paid third-party  reviewer for diagnostic manufacturers’ FDA 510K applications, knowingly using  the false standard and testing scheme and causing manufacturers to submit false  data to the FDA.
  The falsification of the Lyme disease case  definition and testing in order to falsely qualify vaccines is a scheme that  has caused every Lyme disease diagnostic test submitted to the FDA since 1995  to be scientifically invalid.The scheme is enforced by:
The FDA’s 510(K) process which clears new  tests based on “substantial equivalence” to a previously cleared test, all of  which refer back to the original, fraudulently approved scheme;
  Published CLIA standards requiring labs to  perform “two-tier” testing and which are referenced by the FDA in 510(K)  documentation. Authors of these standards participated in the original scheme  and continue to work in government and academia to influence Lyme policy;
  The Association of Public Health Labs (APHL),  which is the current incarnation of the organization (ASTPHLD) that sponsored  the meetings where the false standard was adopted. APHL received federal grant  funding to conduct the meetings and additional grant funding to implement the  false standard in labs globally. Some of the same individuals who implemented  the scheme are still employed at APHL;
  The Infectious Diseases Society of America  (IDSA), who publish the diagnostic & treatment guidelines. Some of the  authors participated in the original scheme. [redacted] author of IDSA’s  guidelines;
  The insurance industry, which adheres to IDSA  guidelines to deny care;
  The ALDF, [redacted]. This organization  presents itself as a pseudo-governmental entity and the single authority on  Lyme disease other than the CDC. ALDF employs propaganda techniques to control  the dialogue and ensure media reliance on their “expertise;”
  Government insiders who participated in the  scheme and still hold positions of authority to set policy. Some hold patents  that would be worthless if the scheme were to be exposed.
  The Federal Tick-Borne Disease Working Group,  created by the 21st Century Cures Act in 2017. Despite the group’s mission and  the requirement to include expert opinion outside the mainstream as well as  public input, the group has been co-opted by the perpetrators of this scheme.Laura HovindCEO of TruthCures, Inc., a 501(c)3 organization dedicated to  justice for victims of Lyme disease fraud
Phyllis Mervine
To the Tick-Borne Diseases Working Group,**Tick-Borne  Diseases Are Actually a Problem in California**Once again I invite you to take a look at the CDC map of Lyme  disease incidence in the US. (1) The map suggests—shockingly—that Lyme disease  isn’t a problem in California and the West Coast. In fact, one only need take  it seriously in 15 states (and the District of Columbia) in two limited  geographic areas in the Northeast and upper Midwest. This map belies the fact  that Lyme disease has been reported in all states and has infected people in  every state, that it’s carried by birds and that the testing is so insensitive  it shouldn’t be used for screening. The map doesn’t even attempt to accurately  portray the epidemic that is claiming lives across our great country.Set aside the fact that the CDC and the IDSA promote the  surveillance case definition for clinical diagnosis, which contributes greatly  to the epidemic of undiagnosed and chronic cases. This CDC *MAP* alone  makes it more difficult for people to be correctly diagnosed in states other  than those very few designated “high risk” by the CDC’s restrictive counting system.  This is a problem the Working Group could easily fix by asking the CDC to  revert to the previous style of map that highlighted counties rather than  states, allowing much finer-grained assessments of risk.I live in a high-risk county for Lyme disease that doesn’t appear  on the CDC’s Lyme map because it’s in the state of California which is  considered low risk. Yet Mendocino County is bigger than Rhode Island and  Delaware combined and back in the nineties the health department reported the  incidence in my county as 26/100,000. (Robert Murray, unpublished data) That’s  the same as Wisconsin’s 3-year average, comfortably in the middle of the CDC’s  high-risk zone. The incidence in Trinity County, just to the north of me, was  74/100,000, comparable to Vermont, the second highest on the CDC’s list. Yet  none of this is revealed on the CDC Lyme incidence map because California is  labeled a “low risk” state.States designated high risk may get federal funding for their  serious problem with Lyme disease. Doctors in CDC’s high-risk states at least  might think of Lyme disease when a patient comes in. Doctors who don’t think of  Lyme disease also don’t order diagnostic tests, artificially depressing numbers  of reported cases. Patients are left in a limbo of sickness or misdiagnosed  with MS, chronic fatigue or one of the other diseases that Lyme mimics.If doctors do test, California isolates of Borrelia burgdorferi  are less likely to test positive against antigen from B31, the New York isolate  used for the big commercial labs like Quest and LabCorp. (2) People infected in California—or  in any other area with diverse Borrelia species and genotypes (at least 24  genotypes of B. burgdorferi have been detected in the state so far)—may be at a  special disadvantage with the CDC testing protocol. California  has the most species of Borrelia sensu lato of any state (six to be exact), as  well as four species of relapsing fever borreliae. California also has at least  10 other tick-borne diseases. Even if patients are eventually diagnosed  correctly they are more likely to have worse outcomes and higher healthcare  costs because of their delayed diagnosis.California is over 1,000 miles from north to south and in area  more than double the size of New England. Its terrain and climate are  incredibly diverse. It does not make sense to mash all the counties into a  single undifferentiated lump.World-renowned  UC Berkeley medical entomologist Robert Lane, who has devoted his life to  studying Lyme disease and other tick-borne illnesses in California and is a  highly ranked NIH grantee, summarized some important points about the focal  nature of Lyme disease in the state and why those differences should be  highlighted in any CDC discussion of Lyme disease in the Far West. [*Excerpt  abbreviated to highlight contrast between northern and southern counties in  California*]:Paradoxically, Lyme disease (LD)  is a highly focal disease with incidence rates at the ZIP code level within  some northern counties (>20 cases/100,000 person-years) approaching those  reported from some highly endemic states in the northeastern United States....  Since LD is reported infrequently from southern California, Calif. Dept. Public  Health, 2011), our chief finding that the overall mean-temporal abundance of  nymphs questing in oak-woodland and chaparral-litter areas in the Santa Monica  Mountains (SMM) (0.4 nymphs per hour) was a mere 0.4% of what it was (105.8  nymphs per hour) in a B. burgdorferi-enzootic oak-woodland community in  Mendocino County was not surprising. Furthermore, none of the SMM nymphs was  infected with either LD or relapsing-fever group borreliae. In contrast, the  prevalence of Bb sl infection in I. pacificus nymphs alone can range as high as  ∼15–40% in some northwestern  Californian woodlands, a region where the nymph has been incriminated as the  primary vector.... Despite the moderate abundance of adult ticks in some of the  habitats surveyed, the Borrelia spp. infection prevalence (0.3%) area-wide in  the SMM was 3–14 times lower than it usually is (∼1–4%)  in adult ticks from northern counties.(3)California is a large and ecologically diverse state. Lyme is much  more common in some areas than others. We have a vested interest in preventing  diseases that are costly. The CDC is supposed to assist in this effort. What  could be simpler?Although the CDC map is problematic, this Working Group clearly  has the power to amend it. The Working Group should ask Congress to make a priority  of making quick and basically no-cost fixes that would have a beneficial effect  on public health for all citizens, irrespective of geographic region.  Without this simple change of a map people in  states the CDC considers low risk, including high risk counties like mine, will  continue to be undiagnosed and misdiagnosed. Many will suffer from late stage  Lyme disease unmitigated by any effective treatments. They will develop chronic  disease and pay more each year in medical costs—indeed, according to evidence  from our patient registry, MyLymeData, many will be disabled and lose their  jobs. (4-7)Having the CDC acknowledge the ILADS guidelines as well as the  IDSA guidelines is another example of such a quick fix. Many patients fail to  recover their health when treated according to the IDSA guidelines, while a new  analysis of data from MyLymeData shows that patients who are now well or who  report substantial improvement have taken longer courses of  antibiotics.(5)I refer you to my previous submission if you need a refresher on  Lyme disease in California.**Tick-borne  Diseases Are a *Big* Problem in California**  https://www.hhs.gov/ash/advisory-committees/tickbornedisease/meetings/2018-06-21/written-public-comment/index.htmlThe  bottom line:California  unquestionably has earned a place on the CDC map. The northwestern part of the  state is highly endemic and one of the best-studied and -understood regions in  the country.  Science is something we  have plenty of, thanks largely to Robert Lane and his army of graduate  students, postdocs, technicians, colleagues and collaborators through the years  who have continued to work on Lyme disease. The Working Group can learn a lot  from California.The CDC map downplays the incidence of Lyme disease in all but 15  states (and Washington, DC). The old county-based map wasn’t perfect, but it  was much better than the latest version. If you look at the CDC map and don’t  know better, you might think that Lyme disease only occurs in two areas of the  country. That is far from the truth.The Working Group needs to ask the CDC to give us a map that more  accurately portrays the incidence of Lyme disease all across America.  An easy fix, costs nothing, alleviates  needless suffering, and will save lives.Phyllis MervinePresident and Founder, LymeDisease.orgReferences
CDC incidence map, accessed 10/16/2020 https://www.cdc.gov/lyme/datasurveillance/maps-recent.html
  Lane RS, Lennette ET, Madigan JE.  Interlaboratory and Intralaboratory Comparisons of Indirect Immunofluorescence  Assays for Serodiagnosis of Lyme Disease. J Clin Microbiol, Aug. 1990,  1774-1779. https://pubmed.ncbi.nlm.nih.gov/2203813/
  Lane RS, Fedorovaa N, Kleinjana JE,  Maxwell M. Eco-epidemiological factors contributing to the low risk of human  exposure to ixodid tick-borne borreliae in southern California, USA, Ticks  Tick-borne Dis 4 (2013) 377– 385. https://pubmed.ncbi.nlm.nih.gov/23643357/
  Johnson, LB. Annual Lyme disease costs  may exceed $75 billion. TBDWG July 24, 2018 - Written Public Comment, accessed  10/16/2020. https://www.hhs.gov/ash/advisory-committees/tickbornedisease/meetings/2018-07-24/written-public-comment/index.html
  Johnson L, Wilcox S, Mankoff J,  Stricker RB. Severity of chronic Lyme disease compared to other chronic  conditions: a quality of life survey. In PeerJ, Wilke, C., Ed. 2014; Vol. 2, p  e322. https://pubmed.ncbi.nlm.nih.gov/24749006/
  Johnson L, Aylward A, Stricker RB.  Healthcare access and burden of care for patients with Lyme disease: a large  United States survey. Health Policy 2011, 102, 64-71, doi:10.1016/j.healthpol.2011.05.007.  https://pubmed.ncbi.nlm.nih.gov/21676482/
  Johnson L. MyLymeData 2019 Chart Book.  figshare. Book. 2019. Accessed 10/16/20 at  https://doi.org/10.6084/m9.figshare.8063039.v1.
  Johnson L, Shapiro M, Stricker RB,  Vendrow J, Haddock J, Needell D. Antibiotic Treatment Response in Chronic Lyme  Disease: Why Do Some Patients Improve While Others Do Not? Healthcare 2020, 8,  383. https://pubmed.ncbi.nlm.nih.gov/33022914/Carl  Tuttle
Member  of NH Governor Chris Sununu’s HB490 Commission to Study Lyme Disease: https://legiscan.com/NH/text/HB490/id/1962817. As a member of the  Governor’s commission, the following inquiry was sent to TBDWG member Dr. Ben  Beard with no response as of Oct 16, 2020.Oct  7, 2020Ben  Beard, MS, Ph.D.Deputy  DirectorDivision  of Vector-Borne DiseasesMember  of the Tick-Borne Disease Working GroupDr.  Beard,On  September 2, 2020 I copied you and the rest of the TBDWG members on an email  sent to Dr. Eugene Shapiro regarding evidence of persistent Lyme infection  after extensive antibiotic treatment. That letter was posted to the social  media platform Change.org for your review: **Persistent infection a Religious  Belief? WG Co-Chair Says Yes**https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/27652172As  you well know, Dr. Shapiro is a defendant in the Lisa Torrey vs IDSA  racketeering lawsuit in Texas District Court so how he was nominated to the  Working Group is beyond belief. Let me remind you that the maximum penalty for  a RICO violation is twenty years in jail. Dr. Shapiro refused to answer my  question presented to him in that letter:“Could  you please explain your motivation for suppressing evidence of persistent  infection after extensive antibiotic treatment and then claiming there is no  evidence?”The  CDC’s refusal to acknowledge persistent infection has left hundreds of  thousands (if not millions worldwide) in a debilitated state as the disease has  been misclassified decades ago as a low-risk and non-urgent health threat.  (Hard to catch and easily treated) Failure to recognize this pathogen as an  antibiotic resistant/tolerant superbug leaves everyone in our state of New  Hampshire vulnerable to its incapacitating outcome.So  now I will ask you Dr. Beard, “what is the motivation for suppressing evidence  of persistent infection after extensive antibiotic treatment and then claiming  there is no evidence?” As a member of the Tick-Borne Disease Working Group  representing the US Centers for Disease Control, I respectfully request a  response to this inquiry.A  copy of this email has been sent to the Chair and members of Governor Sununu’s  HB490 Commission to Study Lyme Disease here in New Hampshire in which I too am  a member. Members of this group have also received a copy of Lyme patient [redacted]  1991 positive culture report performed by the Centers for Disease Control in  Fort Collins.Please  hit Reply-to-All with your response.Respectfully  submitted,Carl  TuttleLyme  Endemic Hudson, NH

                    
  


Content created by Office of Infectious Disease and HIV/AIDS Policy (OIDP) Content last reviewed October 22, 2020Back to top
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