View public comments given to the USA Tick-Borne Disease Working Group (TBDWG)

[CanLyme Note: In the comments of the Infectious Disease Society of America (IDSA) they state,”IDSA continues to advocate for utilizing the best available scientific evidence ” and “While we recognize debate on this subject, we request that any proposed new language reflects the best available data.” The IDSA has routinely ignored, maligned, massaged, and misrepresented published peer-reviewed research from some of the world’s leading universities and scientific minds.  They have taken their lead out of the playbook of the tobacco lobby.]

Please take the time to read “ALL” the comments as there are some very interesting issues discussed.

“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, ABIHM

We 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, 2020 exit disclaimer icon

As 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 Hovind

CEO 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.html

The 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 Mervine

President and Founder, LymeDisease.org

References

  • 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, 2020

Ben Beard, MS, Ph.D.

Deputy Director

Division of Vector-Borne Diseases

Member of the Tick-Borne Disease Working Group

Dr. 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/27652172 exit disclaimer icon

As 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 Tuttle

Lyme Endemic Hudson, NH”

The above comments were taken from the U.S. Department of Human Health Services on October 26th, 2020 at: Here

 

2 Comments

  • Rob Murray says:

    Pat Smith is the only patient representative on this TBDWG panel, which thanks to Dr. David Walker and Dr. Shapiro has turned into a gunfight. Medicine and government have failed us. To solve this medical stalemate it will require some degree of civilian oversight and the partial loss of privilege for medicine to self-regulate. This is because self-regulation only works if the profession is being altruistic. Medical schools, research funding and large political party donations now come from the pharmaceutical industry. The insurance industry has gained control of medical guidelines and can control medicine by that means.

    Professional Self-Regulation and the Public Interest in Canada, CanLyme.org 2017-01-17: https://canlyme.com/2018/04/13/professional-self-regulation-and-the-public-interest-in-canada/

  • Jenna Luche- Thayer says:

    All Lyme organizations should repudiate the non-neutral and harmful term Post Treatment Lyme Disease Syndrome. PTLDS (PLD/PLS) is wrongly defined by the CDC and systematically used to deny treatment for infection. Read this assessment to understand how the PTLDS term is abused to insinuate Lyme patients are hypochondriacs. https://www.linkedin.com/pulse/seventy-post-treatment-lyme-disease-syndrome-ignore-luche-thayer/