Archive for the ‘Activism’ Category

IDSA Founder Used Potent IV Antibiotics for Chronic Lyme

Dr. Burton Waisbren Sr. of Milwaukee, Wisconsin is no longer with us but he would be speaking out about the CDC’s recent paper in the MMWR of five case reports of people who developed complications with IV antibiotics for Lyme disease. https://www.ncbi.nlm.nih.gov/pubmed/28617768https://www.ncbi.nlm.nih.gov/pubmed/28617768

A founding member of the IDSA, Waisbren disagreed with their stance that Lyme is hard to get and easy to treat, is not persistent, and that IV antibiotics are too dangerous to use as a treatment option.

In his book, Treatment of Chronic Lyme Disease, he discusses 51 difficult cases, nearly all Chronic Lyme disease sufferers that had been misdiagnosed with everything from ALS to mental disorders. They had all been neglected by main stream medicine that was following the CDC/IDSA stringent guidelines of essentially 21 days of doxycycline.

Interestingly, Waisbren stated, “Back in the 1950’s, when many of these drugs were first coming out, infectious disease doctors studied and used them widely,” he says. “We would put children with rheumatic fever on penicillin for twenty years or more to prevent strep throat and it (the penicillin) did not hurt them,” he says. https://www.uppitywis.org/blogarticle/making-difference-milwaukee-doctor-chronicles-silent-epidemic

In regard to IV antibiotic treatment for Lyme disease and other tick born illnesses, Waisbren used it often – and heavy doses at that.  In fact, in essay 10 of his book he gives two protocols to be considered for the treatment of chronic LD that includes 6-8 grams of IV ceftriazone for at least 6 weeks and longer if the syndrome has entrenched itself for over a year or if the response is coming along slowly. In tandem with the IV antibiotics he typically also used doxycycline, an erythromycin, Diflucan, Flagyl, Valtrex, and gamma globulin. When there was not a satisfactory clinical response he would treat Babesia with Mepron and/or other antimalarials. For evidence of intransigent bartonellosis (Bell’s palsy of the face and gut, and chronic dermatitis) he would add rifampin and sometimes intravenous genamicin.

That’s a far cry more than the CDC/IDSA mono treatment mandate of doxycycline.

There were no IV complications mentioned at all in his book from the myriad of patients he treated.

Here’s another case:  https://madisonarealymesupportgroup.com/2017/06/26/important-example-of-iv-antibiotics-for-lymemsids/   Initially diagnosed with dementia, “Once home, McGhee, who had begun receiving two weeks of IV antibiotics, seemed to be getting better. His confusion began to clear, his short-term memory improved and his tremors abated. ‘I could feel myself recovering,’ he recalled.”  This link also shows that Lyme/MSIDS can often present as dementia, ALS, Lupus, MS, and numerous other autoimmune diseases.  

About testing he states that the Western Blot appears to be the most positive finding in clinical LD, but…“setting arbitrary level of antibodies to diagnose a disease that has not been amenable to Koch’s postulates seems open to question.  By the same token, ignoring antibody results unless they meet arbitrary levels seems suspect.  The vast majority of patients in this series showed some WB antibody exposure, but many did not meet the arbitrary limits set….in our present state of knowledge, the diagnosis of chronic Lyme disease is a clinical one.  Many of the patients in this series have suffered serious ‘hurts’ when they have been told that they could not have LD because their WB did not meet arbitrary limits.”  

Waisbren gives a stern warning that the public should insist that any new Lyme vaccine be devoid of peptides that mimic those present in humans as this is a potential problem as researchers do not know whether the vaccine can cause molecular mimicry which in turn can cause autoimmunity and circulation with myelin T-cells.  For more:  https://madisonarealymesupportgroup.com/2017/01/26/lyme-vaccine-to-be-tested-on-humans/

Waisbren states in his foreword, “I have to come to the conclusion that there is an epidemic of chronic Lyme disease occurring in the United States that warrants more attention than it is getting from the government and the academic medical establishment. It is hard for me to believe that 51 cases of what I call the chronic Lyme disease syndrome represent a figment of my imagination….I suggest that those who doubt that the Lyme disease syndrome exists and that it can be treated turn to the over 200 peer-reviewed references included in summary articles written by two giants in the Lyme disease field: Dr. B.A. Fallon and Dr. Steven Phillips.”

If Waisbren thought chronic Lyme disease was an epidemic in 2011, what would he think now?

For more rebuttals to the MMWR article:

https://madisonarealymesupportgroup.com/2017/06/23/no-bias-in-mmwr-for-any-other-infectious-disease-requiring-iv-antibiotics-except-for-lyme/

https://madisonarealymesupportgroup.com/2017/06/19/stricker-johnson-rebuttal-to-article-in-mmwr/

https://madisonarealymesupportgroup.com/2017/06/21/ilads-rebuttal-to-mmwr-article/

https://madisonarealymesupportgroup.com/2017/07/01/dr-maloney-comments-on-mmwr-article/

https://madisonarealymesupportgroup.com/2017/06/26/lorraine-johnson-interview-on-cdc-mmwr-article/

https://madisonarealymesupportgroup.com/2017/07/01/dr-shor-on-mmwr-article/

https://madisonarealymesupportgroup.com/2017/06/19/lees-rebuttal-to-cdc-article-in-mmwr/

Global Warming Numbers Fudged

https://player.vimeo.com/video/226928039“>

 Mike Adams, Health Ranger, Approx. 7 min.

Scientists continue to use global warming/climate change as an excuse as to why ticks and the diseases they carry are proliferating.  In scientific circles, global warming is being used as a key to obtain grants to fund more research propagating it.  It’s circular reasoning at its best.

Please remember that Lyme disease began as an epidemic in Lyme, Connecticut in the 70’s.  It is now a pandemic – in every continent but Antarctia and as Dr. Bransfield says, “Given enough time it will be found there too.”  I do not believe for a minute that global warming and/or landscaping practices are causing what we are suffering with today.

This 30 page pdf points out that the steeper warming linear trend of historical GAST data used by the NOAA, NASA, and Hadley CRU, was accomplished by systematically removing the previously existing cyclical temperature pattern.

In sum:

The conclusive findings of this research are that the three GAST data sets are not a valid representation of reality. In fact, the magnitude of their historical data adjustments, that removed their cyclical temperature patterns, are totally inconsistent with published and credible U.S. and other temperature data. Thus, it is impossible to conclude from the three published GAST data sets that recent years have been the warmest ever –despite current claims of record setting warming. Finally, since GAST data set validity is a necessary condition for EPA’s GHG/CO2 Endangerment Finding, it too is invalidated by these research findings.

Abridged Research Report found here:

https://thsresearch.files.wordpress.com/2017/05/ef-gast-data-research-report-062717.pdf  June 2017

http://www.naturalnews.com/2017-07-26-nasa-confirms-sea-levels-have-been-falling-across-the-planet-for-two-years-media-silent.htmlAl Gore states he needs $15 trillion to stop rising ocean levels, yet NASA shows Ocean levels have actually been falling for nearly two years dropping from 87.5mm to below 85mm.  Even in the worst case scenerio, oceans rise at 3.4 mm per year – a foot per century!  https://climate.nasa.gov/vital-signs/sea-level/

http://www.climatedepot.com/2017/05/24/global-warming-is-not-about-the-science-un-admits-climate-change-policy-is-about-how-we-redistribute-the-worlds-wealth/

Excerpt:

Ottmar Edenhofer, lead author of the IPCC’s fourth summary report released in 2007 candidly expressed the priority. Speaking in 2010, he advised, “One has to free oneself from the illusion that international climate policy is environmental policy. Instead, climate change policy is about how we redistribute de facto the world’s wealth.”

Dark Ages of Immunization Medicine are NOW

https://jameslyonsweiler.com/2017/06/29/behold-the-the-dark-ages-of-immunization-medicine-is-now-george-takei-and-john-oliver/  June 29,2017 by James Lyons Weiler, author of The Environmental and Genetic Causes of Autism and Cures vs. Profits

Individual practicioners are losing their jobs; important research is going undone.  Individual press outlets exist under the threat of loss of advertising funding if they publish objective news reports on studies that relate vaccines to risk of neurodevelopmental disorders.  Autism is clearly medical, and has a biological basis (the human brain is, after all, a biological organ).

The phenomenological models of autism have nevertheless given sway to more mechanistic studies; even genetic studies are good as they point to specific impact pathways.  These studies leave room for 50% environmental influences, and yet no study has been conducted to find the genetic variation that exists that contributes to the risk of adverse events from vaccines.

To conduct those studies is taboo, because the conclusions would be blasphemous.  The orthodox view, echoed across media outlets in a disturbing autonomic unison, is that “Vaccines are Safe, Vaccines are Effective”.

If there is heresy, it’s because the orthodoxy is being rightfully challenged.  There is abundant evidence that blind faith in the absolute safety of vaccines is not warranted – and yet issuances of statements from regulatory agencies, media outlets, and vaccine pundits continue to be made, in spite the fact that >$3.5 billion have been paid out due to vaccine injury since the National Vaccine Injury Compensation Program, which came into being with the The National Childhood Vaccine Injury Act (NCVIA) of 1986. That act was created after vaccine manufacturers threatened to stop manufacturing vaccines. The government has broken every promise to the vaccine risk aware activists at the time, who now say they never would have accepted the Act if they had known where it would lead.  They trusted the US government. Instead of advocacy, they have provide adversary.  Instead of facilitating justice, they have obstructed justice. Instead of relieving the burden on families, the Vaccine Court imposes major burdens on families – in some cases fighting it out for nearly two decades. In one case, the plaintiff has sued to allow CDC Whistleblower William Thompson to come forward to testify.

The year that NCVIA passed (1986) was eighteen years before CDC employees Frank Destefano, Coleen Boyle, and Julie Gerberding decided to silence Dr. Thompson on the findings of increased risk of autism due to on-time MMR vaccination, compared to delayed vaccination (2002-2004). It was also eighteen years before the IOM blithely decided to ignore studies and cases relevant to the question of vaccine-induced autism because they didn’t have “a free weekend to plod through them” (2004).  I consider that comment, found in minutes of the IOM meetings to consider the vaccine/autism link, to be evidence of abdication of the IOM to the task of considering science on the question of vaccines and autism, and was one to two major inspiration for me to read 2,000 studies on autism and write “The Environmental and Genetic Causes of Autism“, which was published Nov, 2016.  The second major inspiration was Rr. Adm. Schuchat’s testimony to Congress in which she said that “no credible science” existed that supported a connection between vaccines and autism.  That’s a slap in the face to hundreds if not thousands of extramural researchers.  You can read those comments in “You Know Nothing About Autism, John Snow”). The first printing of “Causes”, by the way, sold out in two months’ time.

I don’t know about you, but I’d like public policy that effects the health of every American citizen to be based on science.  Not weak correlation science that is so heavily manipulated to make the association disappear that it is no longer recognizable as science.  Not science that has been cherry-picked, ignoring studies that do show correlation, and that do show plausibility.

In fact, I am convinced that because CDC’s vaccine safety science was so poorly done that vaccine safety science does not exist in the United States.  Further, it is my professional opinion that the CDC is no longer a relevant actor in the question of vaccine safety because they, like the IOM, abdicated their responsibilities by working to ensure that no association could be found.

Many people are wondering what has become of the Vaccine Safety Science Commission that President Trump asked Robert F. Kennedy, Jr. to chair.  Every day that goes by, more children are subjected to large amounts of aluminum, including infants in the NICU.  That’s why I issued a challenge to the scientific and medical communities to produce studies that show that vaccination of premature infants is safe.  They did not produce the studies because they can’t: no such science has been conducted.  That’s why I called for a ban on vaccination in the NICUs around the country.  Naturally this fell on deaf ears.  So we’ll be taking the science right into the NICUs around the country, and into the Schools of Medicine.  Robert F. Kennedy also called out a challenge – backed by $100,000 cash – to produce a single study that shows that the use of Thimerosal in vaccines is safe.

So far, no one has been able to claim the prize.

So now, we rely on the vestiges of societal pressures to conform in the likes of John Oliver, and George Takei to lecture us about the urgency of vaccination – neither of whom, to my knowledge, have any particular expertise on immunology, toxicology, epidemiology.  I have no beef with John Oliver, nor George Takei.  I hold both of these entertainers in highest esteem.  Both celebrity spokespersons  who assume the task of shaming individuals who happen to be aware of the realities of vaccine risk appear to be a reflection of the vast ignorance about the actual events that led to the CDC’s policy that “Vaccines Do Not Cause Autism” Without knowledge of these events, because the media won’t cover them, well, are they to blame?  They are arguing from a position of ignorance, just like I did in my book on Ebola.  They deserve our compassion, not our scorn.

I bet if John Oliver and George Takei knew that Dr. Thompson was suspended for taking his concerns over pressures to NOT report to the IOM that they did find association between vaccines and autism, and for sending a letter to his boss regarding the 2004 DeStefano et al study that read:

“I will have to present several problematic results relating to statistical associations between the receipt of MMR vaccine and autism”;

And if they knew that Thompson’s boss at the time was Julie Gerberding, who later left the CDC and became President of Merck’s Vaccine Division (makers of MMR); if they knew that DeStefano later admitted to Sharyl Attkisson that the results were removed because they (CDC) did not “believe” them – thus, DeStefano et al. (2004) is not science.  The study was found flawed by IOM, the lead author admitted they spuriously omitted key results… the study should be retracted.

So, I’m asking you, John and George, to take a very close look yourself.   These issues are a matter of public record – the files are available here.  You can watch Rep. William Posey enter them into the Congressional Record.  Get a copy of the documentary “VaXxed”.  Invite Del Bigtree, former producer of “The Doctors”, Polley Tommey and Dr. Wakefield to a private screening.   Call and talk to Dr. Brian Hooker.

Then, John and George, if you have time, and the will to be informed, please give me call.  I can explain four specific mechanisms by which vaccines cause autism in some people.  It will take about one-half hour.

Shania Twain’s Vocal Chord Disorder Caused by Lyme Disease

http://www.cbc.ca/news/entertainment/shania-twain-lyme-disease-1.4194498

By Victoria Ahearn, The Canadian Press Posted: Jul 07, 2017 11:57 AM ET

Shania Twain was riding high in the early-2000s, coming off the smash success of the hit-packed Come On Over and the release of Up!, which topped Billboard’s album charts and got her booked to perform at the Super Bowl.

Then she saw the small bug.

“I saw a tick fall off me,” Twain recalled in a phone interview Thursday.

The Canadian country-pop music superstar was bitten by the tick in Norfolk, Va., and started immediately experiencing symptoms that threatened her performances.

“I was on tour, so I almost fell off the stage every night,“ said the Timmins, Ont.-raised singer-songwriter.

“I was very, very dizzy and didn’t know what was going on. It’s just one of those things you don’t suspect.”

Twain sought treatment and was subsequently diagnosed with Lyme disease, a tick-borne bacteria that leads to flu-like symptoms and can spread within the body.

For Twain it resulted in dystonia, a vocal cord disorder that eventually left her unable to sing for a while and forced her to undergo extensive speech therapy and vocal training.

“It’s difficult work,” she said. “It’s like dealing with an injury. I’m just glad that it’s not my heart or my kidneys or something like that. At least I can do something about it.”

Shania Twain

A throwback from Shania’s Up! days, hosting the Juno awards in 2003. (Tom Hanson/CP)

With a confessional new single on the charts — Life’s About to Get Good, off her upcoming album Shania Now (due Sept. 29) — Twain is talking for the first time about personal issues including her Lyme battle.

Though she was diagnosed right away, she didn’t realize until recently that it was Lyme that led to her vocal issues, which audiences first learned about on the 2011 docu-series Why Not? With Shania Twain.

“It took all these years to determine that,” said Twain. “Then it was all about, ‘Now what do I do about it? How can I fix it?’ So that took several years, just working out what therapy would work for me, without even knowing how well it would work in the end.

“But with perseverance and determination, I was able to record the album and I was able to tour. Getting through all of that, I’m encouraged now and I feel like I can tour again and I’ll make more records. So I’m feeling really successful with that challenge.”

Caught in a ‘very short window’

The five-time Grammy Award winner cautions nature lovers to be vigilant about searching for ticks.

“[Lyme] is very dangerous because you have a very short window to catch it and then treat it and then even when you treat it, you could still very well be left with effects, which is what happened to me,” she said.

“Normally it can attack your nervous system or the vital organs — heart, liver, kidneys, nervous system. It’s a debilitating disease and extremely dangerous. You can’t play around with it, so you’ve got to check yourself for ticks.”

Twain said she counts herself lucky that she saw the tick fall off her, noting many people don’t.

“You’ve got to check out where you are and whatever region you’re in and what the rate of Lyme disease is in the region, if you’re going to go out in nature,” she said. “And I love nature, so that’s a big bummer for me.”

Twain is one of several celebrities who have spoken out about their experience with Lyme disease, including fellow Canadian Avril Lavigne, Alec Baldwin, and former US President George W. Bush.

CDC Sabotages State Laws Protecting Lyme Patients

https://www.linkedin.com/pulse/cdc-sabotages-state-laws-protecting-lyme-patients-jenna-luche-thayer?trk=v feed&lipi=urn%3Ali%3Apage%3Ap_flagship3_feed%3BUDHCBk0s9W%2BA1GLOF69nqg%3D%3D  by Jenna Luche-Thayer, July 4, 2017

The United States (US) Constitution states that ‘all men are created equal.’ However, American history has shown time and again that human nature and cultural beliefs have led to widely accepted discrimination against certain groups.  In almost every case, these marginalized groups have had to organize and demand their rights under the Constitution in order to overturn practices of discrimination.

When one reviews US history, it appears that the federal government takes leadership over state government regarding the rights of marginalized groups. In such cases, the federal government and Supreme Court has intervened to extend active protection for groups living under discriminatory state laws. Classic examples of federal protection of marginalized groups include the federal enforcement of desegregation in the nation’s public school system.

In current times, the US Lyme epidemic has created many thousands of patients debilitated and disabled by the disease and its coinfections.  In contrast to historic trends, there are significantly more state-level commitments to the protection of this vulnerable group than there are federal commitments.  In fact, the federal government has done nothing to protect many who make up this vulnerable group.

The numbers of state actions to protect and serve Lyme patients is directly linked to the increasing national impact of the Lyme epidemic. To put it simply, more and more state officials and legislators have family members, friends and constituents who are suffering significant and enduring debilitations, disability and financial ruin from Lyme, chronic Lyme, and complications from coinfections.  In some cases, the state officials and legislators themselves have Lyme, chronic Lyme or Lyme and coinfections.

As it stands, more than 25 state laws have been passed to provide some measure of protections for Lyme patients and/or practitioners who treat Lyme patients. There are 15 states that have such legislation and more are pending. There are ‘Lyme disease awareness’ laws in 14 states and more are pending.[i]  Furthermore, there are increasing numbers of grassroots Lyme advocates that have gained the support of state officials, legislators, medical and other community leaders to quietly make changes that advance access to Lyme treatment options for state staff and other workers at risk of tick-borne diseases including those in construction, landscaping, forestry, brush clearing, land surveying, farming, railroad work, oil field work, utility line work, park or wildlife management, and migrant workers.  This is driven by concern for staff wellbeing and economic considerations, e.g. the importance of having a healthy workforce and the desire to reduce costs driven by absenteeism, ill health and disability claims.[ii]

There are over 70 active and enduring nonprofit Lyme organizations throughout the US. Many are openly working with legislators and other state officials to advance Lyme awareness and protections for Lyme patients and their practitioners.  Such nonprofit organizations are informing the public and health practitioners that Lyme disease can be complex, dangerous and life altering, that current diagnostic tests are highly inaccurate and a month of antibiotics is often insufficient treatment.  Nonprofit Lyme groups in Michigan, Alabama, Florida, Georgia, Massachusetts, South Carolina, and Wisconsin have put up Lyme Awareness billboards. [iii] Such Lyme awareness activities differ dramatically from those of the federal government and particularly that of the Centers for Disease Control and Prevention (CDC).

Not only has the federal government done little to protect or serve Lyme patients, there is a federal agency that is actively sabotaging the State laws protecting Lyme patients. This federal agency is the CDC.  This may well the only case in US History where the federal government is actively undermining state laws that protect a specific group of suffering medical patients – many of whom are debilitated, disabled and financially ruined from illness.  [iv]

Furthermore, the CDC Lyme Corps program may well be the only public health education program in US history to serve this cruel objective by exploiting the energy of American youth who wish to serve their communities.

It appears that the CDC Lyme Corps program is a national public health education program.  From 2013 to 2016, the CDC website provided no information regarding Lyme Corps.  In mid-May 2016, the CDC website posted a few sentences that provide meager information regarding Lyme Corps.  In a clear departure from normal federal transparency practices regarding public access to unclassified program information, the CDC has made Lyme Corps’ basic program information largely unavailable.

Internet research has found some information regarding Lyme Corps.  According to a conference poster, the CDC Lyme Corps program is a “new means of educating health care providers (HCPs) and the public about Lyme disease because: 1) recent surveys indicate that provider practices are often inconsistent with current Guidelines  and 2) inaccurate information about Lyme disease is disseminated broadly through internet forums, social media, and traditional media.  Pairing these needs with the desire for a “hands on” approach, we developed Lyme Corps. Lyme Corps trains students pursuing health care degrees… to provide Lyme disease education and outreach to both HCPs and the public. Participants’ primary responsibilities include: 1) educating colleagues; 2) educating HCPs via clinic visits and material dissemination; and 3) increasing public knowledge in-person and online.” [v]

As noted, the CDC appears to be concerned that “provider practices are often inconsistent with current guidelines”.  The ‘current guidelines’ referred to are the 2006 Lyme Guidelines written by the Infectious Diseases Society of America (IDSA).

To be clear, the CDC is using Lyme Corps to tell health practitioners the only valid treatment for Lyme, chronic Lyme and complications from coinfections are found in the 2006 IDSA Lyme Guidelines.  However, key science institutions and federal agencies would not support this objective.

For example, the federal Agency for Healthcare Research and Quality (AHRQ) is charged with improving the safety and quality of America’s health care system. AHRQ develops the knowledge, tools and data needed to improve the health care system and help Americans, health care professionals and policymakers make informed health decisions. The federal National Guideline Clearinghouse (NGC) provides summaries regarding evidence-based clinical practice guidelines, including their development and implementation. AHRQ sponsors the NGC database and website for information on evidence-based clinical practice guidelines. The 2006 IDSA Lyme Guidelines were removed from the NGC in February 2016 because they failed to meet federal standards evidence-based clinical practice Guidelines.

The IDSA Lyme Guidelines  have also failed the prestigious Institute of Medicine’s (IOM) Standards for Developing Trustworthy Clinical Practice Guidelines  and the Grading of Recommendations Assessment, Development and Evaluation (GRADE) Working Group system for grading the quality of evidence and strength of recommendations. [vi]

The CDC Lyme Corps was initiated in 2013 prior to the NGC delisting of the IDSA Lyme Guidelines. Nevertheless, as of July 4, 2016, the IDSA and the CDC Lyme policy and programs, including Lyme Corps continue to promote these outdated notions and noncompliant Guidelines.

In 2014, CDC Vector-Borne Disease Branch (VBDB) official Christina Nelson enlisted Lyme Corps members from professional staff in the Vermont Department of Health and students at University of Vermont (UVM). UVM Students shared their altruistic reasons for joining Lyme Corps in the University of Vermont medicine blog Joining Lyme Corps to Raise Awareness in Vermont posted June 11, 2015:

In the fall of 2014, “Dr. Christina Nelson, a medical epidemiologist at the CDC in Fort Collins, Colorado…described a program called Lyme Corps, a CDC-sponsored, interdisciplinary program consisting of medical students, public health students, and residents from the University of Vermont. We were immediately interested in joining the effort. Here’s why…

[Student 1] I grew up in a community in Maine where there is a high incidence of Lyme disease. I have known many individuals who have been affected by this disease and when I volunteered in my local pediatrician’s office three years ago, I got to see first-hand how families can be impacted by this tick-borne illness. I decided to participate in Lyme Corps because I wanted to help teach both my community here in Vermont and back in Maine more about this condition through increased awareness and prevention.

[Student 2] As medical students, there is some straightforward and important information we can relay to patients to help combat misinformation and confusion about Lyme disease.”

The CDC’s initiation of the Vermont Lyme Corps program followed the passing of a Vermont bill that protects Lyme patients and health practitioners who treat Lyme patients. The H. 123 bill has been effective as of July 1, 2014.

According to the July 14, 2014 Providence Journal article  New Vt. law aims to aid in treatment of Lyme disease as cases soar by Lisa Rathke, “Vermont lawmakers passed a bill that they hope will help with treating the [Lyme] symptoms. The new law makes doctors and other health professionals immune from professional conduct charges if they prescribe a course of long-term antibiotics to treat Lyme disease…Vermont joined Connecticut, Massachusetts, Rhode Island and California in protecting doctors if they prescribe antibiotics for more than a month to people with the disease.” [vii]

The Vermont H. 123 bill states:

  • Lyme disease, caused by one or more Borrelia species of spirochete bacteria…has become endemic in the State.
  • Lyme disease may be successfully treated with a short-term course of antibiotics if diagnosed early; however, for patients whose Lyme disease is not identified early, complex and ongoing symptoms may require more aggressive treatment as acknowledged by the CDC and the International Lyme and Associated Diseases Society (ILADS).
  • Treatment of Lyme disease needs to be tailored to the individual patient, and there is a range of opinions within the medical community regarding proper treatment of Lyme disease.
  • Coinfection by other tick-borne illnesses may complicate and lengthen the course of treatment.
  • The purpose of this act is to ensure that patients have access to treatment for Lyme disease and other tick-borne illnesses in accordance with their needs and the clinical judgment of their physicians.
  • The Board [Vermont State Board of Medical Practice] shall not pursue disciplinary action against a physician, physician assistant, or nurse practitioner, as appropriate, solely for the use of medical care recognized by the Guidelines of the CDC, IDSA or ILADS for the treatment of a patient’s symptoms when the patient is clinically diagnosed with Lyme disease or other tick-borne illness.

It should be noted that, in contrast to the IDSA, the ILADS Lyme Guidelines are federally sanctioned by AHRQ and are posted on the NGC.  ILADS Lyme Guidelines have also met the IOM Standards for Developing Trustworthy Clinical Practice Guidelines and the GRADE Working Group system for grading the quality of evidence and strength of recommendations.

The CDC Vermont Lyme Corps disseminates public education messages that subvert the patient protections stated in the Vermont H. 123 bill. These include the outdated CDC and IDSA claims that Lyme is hard-to-contract-and-easy-to-diagnose-and-cure.  These messages are detailed in UVM blog The Ticks Are Out! Get the Facts About Lyme Disease In Vermont and The Medical Students’ News Publication of the American Academy of Pediatrics (AAP) – Section on Medical Students, Residents & Fellowship Trainees  Issue 28, Winter 2016   (pages 5 and 6).  [viii] [ix]

For example:

  • The existence of patients with persistent infection is denied.
  • Complications from coinfections are minimized and trivialized.
  • The public and practitioners are denied information regarding the range of opinions within the medical community regarding proper treatment of Lyme disease.
  • There is little to no message regarding how Lyme treatment needs to be tailored to the individual patient.
  • The federally non-compliant IDSA Lyme treatment protocols are advanced as the only treatment option for all patients.
  • Practitioners’ clinical diagnoses are suggested to be less valid than the 1995 two-tiered test designed for surveillance purposes.

In addition to promoting the outdated and noncompliant 2006 IDSA Lyme Guidelines, the CDC has trained its Vermont Lyme Corps student members to disseminate misinformation to practitioners and the public.  These Lyme Corps messages undermine the core purpose of the Vermont bill “to ensure that patients have access to treatment for Lyme disease and other tick-borne illnesses in accordance with their needs and the clinical judgment of their physicians.” These transgressions can be categorized as explicit misinformation, the denial of patient rights to federally sanctioned treatment options and a neglect of patient centered care.

Apparently, Lyme Corps has also been quite active in Pennsylvania.  In 2013, CDC recruited “10 Lyme Corps team members in partnership with Drexel University and the Philadelphia Department of Public Health.  Participants attended a 2-day training workshop on clinical and public health management of Lyme disease.  Participants kept detailed logs of activities, participated in monthly conference calls, consulted with CDC organizers regularly.  From April-May 2013, participants distributed over 1500 printed materials to schools, clinics, parks, etc. They gave 23 presentations to clinical staff at medical practices (average practice size 1,800 patients). Participants also presented to public health officials and a wide variety of adult and children’s groups from the general public. Total direct reach was 917 persons. Participants answered over 200 Lyme disease-related questions on health forums.”[x]

Pennsylvania also has a law regarding Lyme.  According to Newsworks July 10 2014article, New Pa. Lyme disease law focuses on education, lacks mandatory tick registry by Jessica McDonald, BILL No.177 is aimed at providing Lyme disease “information to both the public and healthcare providers” and “created a task force to work on prevention and treatment.” [xi]  The Pennsylvania Lyme bill also provides some measure of protection in the way Lyme and coinfections are defined and diagnosed.  The bill language describing the illness is very current compared to the outdated Lyme misinformation disseminated by IDSA, CDC and Lyme Corps on July 4, 2016.

BILL No.177 defines Lyme disease as a

  • clinical diagnosis of a patient by a licensed physician or certified registered nurse practitioner of the presence of signs or symptoms compatible with acute, late-stage, persistent infection with Borrelia burgdorferi”
  • “complications related to such infection” and “other acute and persistent manifestations of such an infection”
  • or with such “other strains of Borrelia that are recognized by the CDC as a cause of Lyme disease” – this would include Borrelia mayonii and other Borrelia. 
  • The bill recognizes “Bartonella, babesiosis/piroplasmosis, anaplasmosis, ehrlichiosis or other tick-transmissible illness” – this would include Rocky Mountain Spotted Fever, Southern Tick-Associated Rash Illness, Tick-Borne Relapsing Fever, Tularemia, Anaplasmosis, Colorado tick fever, Powassan encephalitis,  Q fever and so forth.

In summary, Bill No.177 acknowledges and recognizes the need to treat persistent or chronic Lyme infection and related complications and coinfections.  It also reinforces the right of physicians to make a clinical diagnosis independent of the CDC’s preference for the 1995 two-tiered tests developed for disease surveillance. [xii]

CDC Lyme Corps activities have also been confirmed in Maryland and Virginia. As in Vermont and Pennsylvania, Lyme Corps has disseminated the message that the 1995 two-tiered test designed for surveillance purposes – a test that is 50% inaccurate [xiii]  – is needed to validate a clinical diagnosis by a health practitioner.

Both Maryland and Virginia have passed laws whereby any patient who has this outdated two-tiered test must be informed by their practitioner that ‘a negative test does not mean they do not have Lyme.’ The Lyme Corps message insisting on the validity of the two-tiered test undermines the purpose of these laws and endangers the public.

False negative test results often lead to delayed diagnosis and full systemic complications. These complications may include serious heart, nervous system and immune impairments, organ dysfunction, life-altering damage and death.  Officials in many states have engaged with Lyme patients who have suffered devastating health, social and financial consequences from false-negative Lyme test results.

According to the CDC, “Lyme Corps is…dedicated to developing a talented, committed team of students and residents who provide Lyme disease education and outreach to both health care providers and the public…Lyme Corps is community-based… members facilitate Lyme disease education in …schools, and community events (farmers’ markets, trail runs, etc.).” [xiv]  However, the CDC trains its Lyme Corps members to champion federally noncompliant IDSA Lyme Guidelines. Such members, regardless of talent and commitment, will fail to provide their communities relevant Lyme disease education.

There are other CDC activities that threaten Lyme patients’ legal protections. For example, the CDC Lyme website recently posted an advance publication of the Medscape Volume 22, Number 7—July 2016 Continuing Medical Education (CME) Activity,  Current Guidelines, Common Clinical Pitfalls, and Future Directions for Laboratory Diagnosis of Lyme Disease, United States.   Four of the article’s five authors are CDC’s DVBD staff and one of them is Lyme Corps’ C. Nelson. Like Lyme Corps, and the CDC/IDSA Lyme Guidelines themselves, the information provided in this CME activity appears to be limited to outdated information.

Therefore, this CME also subverts the Lyme protections detailed in nearly 1/3 of the country. There are additional legal conflicts surrounding the Lyme CME. For example, any state official or health practitioner would be well within their rights to refuse to participate in this CME on the grounds the content contradicts their state protections for Lyme patients and practitioners.

Such state officials and health practitioners should be exempt from this requirement without repercussions to their professional standing or promotions.  In almost 1/3 of the country, there are an array of similar legal concerns regarding the adoption of most of the Lyme material currently being disseminated by the CDC.

As previously noted, the CDC Lyme policy and all its programs give singular preference to the noncompliant IDSA Lyme Guidelines.  There are four IDSA members – intimately involved with 2006 and pending IDSA Lyme guidelines – who also generate income by acting as expert witnesses on behalf of health insurance companies to deny patients non IDSA treatment protocols and they assist members of medical boards affiliated with the IDSA to sanction doctors who treat patients for chronic Lyme and Lyme with coinfections. [xv]

The IDSA has also taken numerous actions against Lyme patients’ and practitioners’ protections.  One such IDSA website post  State-Level Lyme Disease Advocacy Efforts  openly admits to undermining Lyme patient rights in: California, Connecticut, Maine, Maryland, Massachusetts, Minnesota, Nebraska, New Hampshire, New Jersey, New York, Ohio, Oregon, Pennsylvania, Rhode Island, Texas, Vermont, Virginia, West Virginia and  Wisconsin. [xvi]  Another such IDSA web announcement is the IDSA’s Lyme Disease Advocacy Efforts. [xvii] The ‘anti-protections’ advocacy letters are detailed.

03/13/2013 – IDSA objects to a Virginia law that requires physicians to provide patients with a written notice explaining the uncertainty of test results for Lyme disease. The Society supports better diagnostics and public education, but the specific communication mandated in the law doesn’t take into account ongoing scientific advances.

04/05/2011 – IDSA has urged lawmakers not to support bills that would restrict the State Board of Medicine from disciplining physicians who prescribe dangerous therapy for Lyme disease.

06/25/2009 – In a letter on the proposed Lyme and Tick-Borne Disease Prevention, Education, and Research Act, IDSA raised concerns about patients being improperly diagnosed with “chronic” Lyme disease and receiving dangerous treatments.

08/07/2007 – IDSA sent a letter to the National Governors Association and National Conference of State Legislatures opposing the prolonged usage of antibiotics in the treatment of “chronic” Lyme disease as well as urging the inclusion of board-certified infectious disease physicians in public hearings on Lyme disease.

As noted, Lyme Corps and other CDC Lyme programs wrongfully subvert state laws that protect Lyme patients and their practitioners. Such programs are the direct responsibility of certain CDC officials. These CDC officials are disregarding a number of federal laws in order to promote the CDC Lyme policy and programs. These violations include the following: [xxii] [xxiii]  [xxiv] [xxv] [xxvi] [xxvii]

A breach of public trust by the CDC Directors responsible for protecting the public health and welfare against Lyme epidemic – all these CDC officials are members of IDSA and there are no non-IDSA members among the Directors responsible for CDC’s Lyme policy and programs.  [xxviii]

This group of CDC officials show continuous and singular “preferential treatment” for the ‘Lyme product’ of a private medical society, the IDSA. The product is the IDSA Lyme Guidelines; these Guidelines have failed federal criteria for evidence-based medicine.

The promotion of these federally noncompliant IDSA Guidelines make waste of tax dollars and misinform the public. Such actions run contrary to protecting the health and welfare of the public against the Lyme epidemic and they show a strong a lack of “honest effort in the performance of their duties.”

These same officials (employees) show a clear pattern of discrimination against patients  handicapped by persistent Lyme infection and Lyme and coinfections and in this regard “do not adhere to all laws and regulations that provide equal opportunity for all Americans regardless of race, color, religion, sex, national origin, age, or handicap.” The term equal opportunity includes equal access to federally sanctioned Lyme treatments. Furthermore, they have created, enforced and/or implemented a series of policies and programs that actively restrict treatment options for Lyme patients and dismiss and trivialize their pain and suffering.

Through Lyme Corps and other activities, and in close partnership with the IDSA, these CDC officials have “misused their own time, misused the time of state officials and subordinates and misused government property” to advance programs and policies that misinform and endanger the public and discriminate against Lyme patients and practitioners who treat Lyme patients.

These behaviors are being undertaken by handful of CDC officials.  However, these actions are affecting Lyme patients nationwide.  Furthermore, there are now chronic Lyme patients among the government officials found in state and federal agencies. There are now presidential advisers who have chronic Lyme, members of Congress and the Senate who have Lyme and staffers suffering from chronic Lyme.  According to one staffer living in Virginia, a recent poll showed Lyme disease to be the number one concern of residences in Northern Virginia.[xxix] Such residents are not concerned about the CDC’s version of Lyme, a simple nuisance illness that is hard-to-contract-and-easy-to-diagnose-and-cure; they are concerned about the complex life-altering illness that is disabling and bankrupting their friends, neighbors and family members.

Residents of Northern Virginia, like many residents in Virginia, Maryland, Vermont, Massachusetts, Ohio, New Jersey, Rhode Island, Pennsylvania, New York, New Hampshire, Minnesota, Maine, Delaware, Connecticut and California have not sat idly by waiting for the federal government to address the Lyme epidemic and take care of Lyme patients. These states’ legislators and citizens have passed laws to take care of this marginalized and vulnerable patient group.

Regrettably, the CDC is making history by undermining state laws that protect Lyme patients, many of whom are debilitated, disabled and financially ruined from illness.  CDC discrimination against Lyme patients is resulting in such patients being denied access to federally sanctioned treatments. On July 4th 2016, the rule of law does not appear to apply to CDC Lyme policy and programs.

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Bio – Jenna Luché-Thayer’s expertise includes government transparency and accountability and the integration of marginalized groups. Luché-Thayer is informed by three decades of professional policy and grassroots experience in 40 countries.  She has extensive experience in congressional relations, testimony and legislation.  She has worked with governments, the United Nations, nonprofits and the corporate world and has over 65 sponsored publications.  Luché-Thayer received the International Woman’s Day Award for Exemplary Dedication and Contributions to Improving the Political and Legal Status of Women (US government) and built the Highest Ranking Technical Area in Accomplishment, Innovation & Comparative Advantage for United Nations Capital Development Fund.

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Endnotes

[i] Sources include Lyme Disease Association and Lyme Disease Organization – two nonprofit organizations that advocate for improved testing, treatments and Lyme awareness.

[ii] This information has been gathered from interviews and the sources will not be disclosed.

[iii] https://www.lymedisease.org/get-involved/take-action/lyme-awareness-month/

[iv] There is federal and state controversy over medical marijuana – medical marijuana is used by many different patients groups to reduce nausea and pain.

[v] https://nphic.confex.com/cdc/nphic14/webprogram/Paper35413.html

[vi] IOM is now the Health and Medicine Divisions (HMD)

[vii] http://www.providencejournal.com/article/20140712/NEWS/307129986

[viii] https://medcenterblog.uvmhealth.org/family-health/the-ticks-are-out-get-the-facts-about-lyme-disease-in-vermont/

[ix] https://www.aap.org/en-us/Documents/coms_newsletter_winter_2016.pdf

[x] https://nphic.confex.com/cdc/nphic14/webprogram/Paper35413.html

[xi] http://www.newsworks.org/index.php/local/healthscience/69957-new-pennsylvania-lyme-disease-law-focuses-on-education-lacks-mandatory-tick-registry

[xii] The Council of State and Territorial Epidemiologists (CSTE) is the organization responsible for providing CDC with disease surveillance guidance. In 2011, CSTE redefined the surveillance case definition for Lyme disease. They stated that the two-tiered test is to be used only for surveillance purposes and not for diagnosis. https://wwwn.cdc.gov/nndss/conditions/lyme-disease/case-definition/2011/

[xiii] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2078675/

[xiv] http://www.cdc.gov/lyme/faq/index.html

[xv] See under Disclosures in article Unorthodox Alternative Therapies Marketed to Treat Lyme Disease    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4490322/

[xvi] http://www.idsociety.org/State_Lyme_Policy.aspx

[xvii] http://www.idsociety.org/Lyme_Policy/

[xviii]http://www.idsociety.org/uploadedFiles/IDSA/Topics_of_Interest/Lyme_Disease/Policy_Documents

/VA_LabTestingBill_2013.pdf

[xix]http://www.idsociety.org/uploadedFiles/IDSA/Topics_of_Interest/Lyme_Disease/Policy_Documents

/Lyme%20disease_Legislative_Letter_NH_Bradley_%204-05-2011.pdf

[xx]http://www.idsociety.org/uploadedFiles/IDSA/Topics_of_Interest/Lyme_Disease/Policy_

Documents/IDSA%20HR%201179%20Letter%20to%20US%20House%20of%20Representatives%20062509.pdf

[xxi]http://www.idsociety.org/uploadedFiles/IDSA/Topics_of_Interest/Lyme_Disease/Policy_Documents/

IDSA%20Letters%20to%20NGA%20and%20NCSL%20Regarding%20Problematic%20Lyme%20Disease%20Legislation%20080707.pdf

[xxii]https://www.oge.gov/Web/oge.nsf/Resources/Standards+of+Ethical+Conduct+for+Employees+of+

the+Executive+Branch

[xxiii] PART 2635 – STANDARDS OF ETHICAL CONDUCT FOR EMPLOYEES OF THE EXECUTIVE BRANCH SUBPART A – GENERAL PROVISIONS  § 2635.101 Basic obligation of public service.

[xxiv] Reference : 5 C.F.R. Part 2635 As amended at 76 FR 38547 (July 1, 2011) –  Page 55 SUBPART G – MISUSE OF POSITION § 2635.701

[xxv] Page 57 (d) Performance of official duties affecting a private interest.

[xxvi] Page 59  § 2635.704 Use of Government property.

[xxvii] Page 60 § 2635.705 Use of official time.  (b) Use of a subordinate’s time.

[xxviii] This is the chain of command: DVBD L. Petersen reports to B. Bell à National Center for Emerging and Zoonotic Infectious Diseases Director B. Bell reports to R. Khabbaz à Infectious Diseases Director R. Khabbaz reports to CDC Director. Furthermore, C. Nelson, the DVBD official responsible for implementation of Lyme Corps joined the American Academy of Pediatrics (AAP) in 2014. In 2015, the AAP was selected as one of the key IDSA collaborators to develop the new Lyme Guidelines.

[xxix] Information provided during May 2016 meeting by staffer representing member on the Science Subcommittee on Oversight