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Second meeting of TBD Working Group

Here’s what happened on the morning of day two, Tick-Borne Disease Working Group. This post will be updated later to include afternoon remarks.

First meeting of TBD working group highlights Lyme patient perspective

The first meeting of the federal Tick-Borne Diseases Working Group has now concluded in Washington DC. The emphasis was on the patient perspective. There will be a second meeting tomorrow (Tuesday, Dec. 12).

Click on link above for’s Lonnie Marcum tweets.   (Other videos and content will be posted as it becomes available.)

On Twitter, check out: @LymeNews.



Dr. Muth will present information on new treatment options for Lyme disease. She will discuss various bacterial, viral and immunological effects that activate the immune system and cause symptoms to increase, as an over active immune system can mimic Lyme/MSIDS symptoms. She believes it’s important to look at all angles of the immune system and how it affects patients.

She will review how Marcon’s, Viruses, Heavy Metals and vaccines activate the immune system and cause increased brain inflammation. She will discuss treatment options available to date, including the AK protocol and how it can assist with Lyme treatment, as well as how it fits in with treatment successes in her practice.

When:  Saturday, Jan. 27 from 2:30-4:30

Where:  East Madison Police Station – 809 S Thompson Dr, Madison, WI

Parking details here:  No parking allowed in red areas. You may park in the dotted yellow areas, in-between the light poles and in the last row under the red, as well as on the road leading up to the station. 

For more information on Dr. Muth:


Conquering Lyme Disease
Science Bridges the Great Divide

Brian A. Fallon, MD, and Jennifer Sotsky, MD

Columbia University Press

Lyme disease is the most common tick-borne illness in the United States, with more than 300,000 cases diagnosed each year. However, doctors are deeply divided on how to diagnose and treat it, giving rise to the controversy known as the “Lyme Wars.” Firmly entrenched camps have emerged, causing physicians, patient communities, and insurance providers to be pitted against one another in a struggle to define Lyme disease and its clinical challenges. Health care providers may not be aware of its diverse manifestations or the limitations of diagnostic tests. Meanwhile, patients have felt dismissed by their doctors and confused by the conflicting opinions and dubious self-help information found online.

In this authoritative book, the Columbia University Medical Center physicians Brian A. Fallon and Jennifer Sotsky explain that, despite the vexing “Lyme Wars,” there is cause for both doctors and patients to be optimistic. The past decade’s advances in precision medicine and biotechnology are reshaping our understanding of Lyme disease and accelerating the discovery of new tools to diagnose and treat it, such that the great divide previously separating medical communities is now being bridged. Drawing on both extensive clinical experience and cutting-edge research, Fallon, Sotsky, and their colleagues present these paradigm-shifting breakthroughs in language accessible to both sides. They clearly explain the immunologic, infectious, and neurologic basis of chronic symptoms, the cognitive and psychological impact of the disease, as well as current and emerging diagnostic tests, treatments, and prevention strategies. Written for the educated patient and health care provider seeking to learn more, Conquering Lyme Disease gives an up-to-the-minute overview of the science that is transforming the way we address this complex illness. It argues forcefully that the expanding plague of Lyme and other tick-borne diseases can be confronted successfully and may soon even be reversed.

Brian A. Fallon, MD, is director of the Lyme and Tick-Borne Diseases Research Center at the Columbia University Medical Center.

Jennifer Sotsky, MD, is a physician with a specialty in narrative medicine. She is a resident at Columbia University Medical Center.  By James Lyons Weiler, Dec, 2017

Zika vs. Aluminum: Double Standards on Levels of Evidence and Media Liability

Millions of Dollars spent, Massive Media Coverage for Zika and Microcephaly – Based on One Autospy Report. Aluminum Found in Five Autistic Brains (N=5)… Media Crickets.
WHEN THE CDC announced that Zika virus had been found in 1 (ONE) brain of an aborted fetus from Brazil back in 2016, they heralded that 1 (ONE) data point as “The Srongest Evidence Yet”. Here’s the BBC News’s webpage from 10 Feb 2016:


And here is the Washington Post’s coverage:


And look at the page from USA Today:


All of that for ONE autopsy result.

The study published last week by Dr. Chris Exley found high levels of aluminum in 5/5 kids with autism.


CDC has ONE autopsy report. Dr. Exley has FIVE.

Some have criticized the Exley study for not having “controls”. I’m sorry? There is not supposed to be ANY aluminum in children’s brains. Tested against the null hypothesis, yes, there is significantly more than zero.

CDC’s fetus with Zika virus came from a population in which Zika virus infection was high. Most cases of Zika virus infection during pregnancy did not lead to microcephaly. And microcephaly was highest in the northeastern part of Brazil, in poor women from the slums… who were being experimented on with whole-cell pertussis.

Yes, you read that right. WHOLE cell pertussis.

Well, it’s one thing to say the media is biased. After all, Exley’s study provides the strongest evidence to date that aluminum from vaccines is involved as a cause of autism. In fact, the study leaves no room for doubt, if we apply the same standard of the level of evidence used to support the idea that Congress had to pony up $1.1 Billion dollars for a vaccine against Zika.

But there is AMPLE room for doubt that Zika drove the microcephaly increase in Brazil.

Here is a timeline of microcephaly in Brazil:

Note that the microcephaly increase actually started in July 2012, a year after the advent of the national Stork program, a prenatal care program that includes vaccination during pregnancy. And note that July 2012 is BEFORE Zika landed on the continent of S. America in July 2014. In December 2014, Brazil’s mandatory Tdap vaccination program started. But vaccination during pregnancy had already begun. The CDC’s autopsied fetus study was published in early 2016 – that’s the CDC’s best evidence to date.

So it turns out that Zika infection rates are seasonal in Brazil. So we’d expect another surge in microcephaly with the annual increase in Zika infections, right?


No, not at all. Why?

Zika does not cause microcephaly. The American taxpayer has been duped. And sprayed with pesticides to “protect” against Zikain NYC even before any reported cases of Zika – with pesticides that are known to cause autism.

So when can we start asking: Is the media bias in the US now a causal factor in the autism epidemic? How can the media be held accountable?

What Can You Do?

You can write to the reporters on each of these stories and ask them to report on Dr. Exley’s study as providing “proof” that aluminum causes autism – be sure to send them the link to this blog.

Here are the email addresses:
Lena H. Sun (

Liz Szabo – nevermind, she is a senior medical reporter at Kaiser Health News in Washington. You can tweet her @LizSzabo.

Comment here on PBS’s lack of coverage:

You can also PRINT a copy of the aluminum study and mail it to a pediatrician, an ob/gyn, a legislator…

If bona fide, objective reporters write to me, I’ll share a manuscript that was not published by PLOS One because they found it too “confusing”. The manuscript simply listed all of the reported possible causes of microcephaly and examined the available evidence at that time.

Read more about Dr. Exley’s study:

Discovery of “Shockingly High” Levels of Aluminum in Brains of Individuals with Autism Suggests Link with Aluminum-Containing Vaccines

New study: Massive Aluminum levels in Autism brains, is this the smoking gun for vaccines?



Lyme/MSIDS isn’t the only topic of media bias.  The only way things are going to change is if we all play an active role and hold scientists and journalists accountable.  I’ve often pointed out the obvious bias in the handling of Zika vs the handling of Lyme/MSIDS.  While research for Lyme boasts 230 peer-reviewed studies showing borrelia persistence, Zika has 1 autopsy.

For a great article explaining the Lyme War

TheCaseforthePersistenceofLymeDiseaseAfterAntibioticTherapy  The truth is that over 50% of the IDSA’s guidelines are based on “expert opinion” rather than “evidence-based medicine” as their publication suggests. A further 31% of the IDSA guidelines are based on observational studies. Only a meagre 29% of the IDSA Guidelines fit into “evidence-based medicine”.(22,23,24,25,27) Importantly, the IDSA’s own research supports these very findings.(22)

Please understand for those of you just tuning in – THIS IS A WAR of epic proportions.

The reason we find ourselves here even 40 years after Lyme was “officially” discovered is due to money, power, and collusion at the highest level of government. The government holds the patents on Borrelia burgdorferi (Bb), Lyme testing, the Lyme vaccine, and has been controlling the narrative for decades, even taking specific bands out of the test that shows infection due to their patent on the Lyme vaccine. patent on OspA (outer surface protein) of Borrelia Burgdorferi (Bb). patent on Lyme test based on OspA (outer surface protein) which causes the same disease it was meant to prevent which is the real reason it was yanked from the market. Gov. patent on Lyme Vaccine A lengthy expose on all shenanigans for the stout of heart.

Please, don’t allow yourself to be fooled. The powers that be have been controlling research and the narrative on Tick borne illness from the start. Nothing about this is new. It’s as old as the hills. In fact, one researcher has filed an anti-trust law-suit due to government suppression of a more accurate and cheaper Lyme test:
This same researcher and others have also complained of how the CDC is controlling the research being done: This article explains how they do it:

Another lawsuit filed by patients is in the works as well:

Time for the media to stop peddling to biased stakeholders.  This will only happen if we call them out and stop buying their wares.  by Dr. Mercola, December 11, 2017

Poop Pills Can Combat Deadly Infections

poop pills

Story at-a-glance

  • An answer to a serious infection called Clostridium difficile (C. diff.) infection comes from a relatively new therapy called fecal microbiota transplantation (FMT)
  • C. diff., a common bacterium in hospitals, is a leading cause of diarrhea in health care today, with older people on medication at greatest risk, and often occurs soon after administration of antibiotics
  • FMT is when feces are transferred from a healthy donor to the gastrointestinal tract of a C. diff-infected patient to reintroduce healthy bacteria into their gut, but the pill form offers a noninvasive alternative
  • In terms of patient comfort, fewer trial subjects who were given the FMT capsule described the experience as “unpleasant” compared to receiving FMT through the colonoscopy route
  • Your gut health, as well as your overall health, are closely interconnected, so “feeding” your microbiome, as well as resisting antibiotics as much as possible, will optimize your microbiome

While it would seem that a fecal transplant in capsule form would be a somewhat bitter pill to swallow, scientists conducting a randomized clinical trial1 found this mode of transportation, in a matter of speaking, for fecal therapy was easier and just as effective for treating patients infected with the serious and dreaded Clostridium difficile infection (RCDI), or simply “C. diff.,” as receiving a fecal transplant via enema or colonoscopy, also known as fecal microbiota transplantation (FMT).

Further, FMT in pill form has the capacity to improve patients’ quality of life, as it caused fewer adverse events.2 For those who may be unaware of this protocol, fecal transplants are now not just common, but according to one study, so successful that the first trial was stopped early because the researchers deemed it unethical to withhold the treatment from patients (as some typically are given alternative therapies). As noted by NPR:

“That’s because C. diff. is kind of a special case. It’s a very invasive microbe that has repeatedly been assaulted by antibiotics which have caused a collapse in other microbes. So it’s an easy environment for microbes in a donor stool to invade.”3

C. Diff.:  Common Bacterium in Hospital Environments

One of the problems with C. difficile is that it’s one of the most common health care-associated infections and one of the foremost reasons hospital patients develop debilitating, recurrent diarrhea that’s hard to get a handle on, medically. It’s especially rampant among older individuals on antibiotics for other conditions. CIDRAP states:

“(C. diff.) can also be difficult to completely cure. As a result, recurrent infections have become a growing challenge. At least 20 percent of patients who get an initial CDI have a recurrent infection within eight weeks, with the risk of RCDI being as high as 50 percent to 60 percent after three or more infections.”4

Researchers at Brown University, where one program focuses on digestive microbes such as bacteria, fungi and viruses (human microbiomes), say C. diff. became hard to manage when antibiotics prescribed for other conditions disturbed what may have been perfectly functioning, benign gut organisms. By no means a trifling infection, Newsweek pulls no punches as it calls C. diff. both “nasty” and “deadly.”

Antibiotics may be the usual treatment in hospitals, but they only contribute to the problem by effectively wiping out beneficial bacteria in patients’ collective microbiome that might keep C. diff. in check, CIDRAP observes. In essence, FMT can be explained as feces being transferred from one healthy donor to the gastrointestinal tract of a C. diff. infected patient. The purpose is to “reintroduce healthy bacteria into the gut (as) a non-antibiotic therapy that’s shown promise in clinical studies.”5

What Happens When Your Gut Biome Becomes This Compromised?

C. diff. infection impacts half a million people in the U.S. every year. Further, it’s fatal for 15,000 of them, also every year, according to the Centers for Disease Control and Prevention (CDC).6 Still, there have been patients who found the prospect of fecal transplant therapy, even through surgical means, to be just too daunting. In fact, efforts have actually been made to extract the beneficial bacteria from the fecal matter to make the idea of swallowing it more palatable, but the effort failed.

Far from being a brand-new, innovative idea, using poop to fight the effects of C. diff. and other problems in patients has been around since at least the late 1950s. Different names, besides FMT, have included fecal biotherapy and fecal flora reconstitution. One study explains the science behind it:

“FMT involves reconstituting the normal intestinal microflora in a diseased person by infusion (via nasogastric tube, enema or colonoscopy) of a liquid suspension of stool from a healthy donor. The first report of the use of FMT (for a patient with non-CDI pseudomembranous colitis) was published in 1958. Since then, there has been mounting evidence supporting its use in recurrent CDI.”7

Your Microbiome Can Make or Break Your Health

How your microbiome works is still being scrutinized by scientists, especially in the way it can make or break your overall health. It’s clear that certain foods are considered positive for “feeding” your microbiome. Foods containing fiber are at the top of the list as they release nutrients for your gut lining. The connection between what you eat and how healthy your gut is are closely interconnected, so consider adding more fiber, especially if you aren’t getting the 50 grams of fiber per 1,000 calories you eat that I recommend.

One way fiber benefits your health is by providing beneficial bacteria in your gut with the materials needed to thrive. These beneficial bacteriaassist with digestion and absorption of your food, and play a significant role in your immune function.

One of the best ways to regain optimal balance in your gut is by eating fermented foods. Besides kimchi and other fermented vegetables, which you can make at home very easily, there are also fermented beverages such as kefir and yogurt, all providing trillions of beneficial bacteria — far more than you can get from a probiotics supplement.

Poop Pills, a Colonoscopy or the Other Alternatives?

It’s been a tough call for scientists and physicians alike, trying to determine which is worse: C. diff., antibiotics, colonoscopies (the most successful in terms of introducing fecal matter into patients) or the new poop pill-popping protocol. C. diff. being what it is comes with serious, life-altering symptoms, which Medline Plus8 says can include:

Watery diarrhea multiple times daily Stomach cramps Fever
Dehydration Nausea Abdominal pain and tenderness

A colonoscopy is an example of an invasive procedure, but there’s also the fact that patients typically undergo mild sedation, which introduces another risk because their breathing may become too slow. Further, there’s the chance that in the course of the procedure, the patient’s intestinal wall could be punctured, which could introduce life-threatening infections. Time observed:

“The benefits of swallowing a capsule are also undeniable compared to swallowing — or trying to swallow — a feeding tube through which a slurry of fecal matter is flowing through. (That’s the way that doctors testing fecal transplants originally administered their doses.) That carries the risk of aspirating some of the fecal slurry into the lungs — not to mention the unpleasantness of introducing feces to the mouth area and accidentally breathing it in.”9

The Poop-in-a-Capsule Trial

Dina Kao, a gastroenterologist at the University of Alberta in Canada, used the pills described by Time10 as “fecal matter manufactured into a capsule” for 116 patients in the trial. Compared to a colonoscopy, both methods showed a 90 percent reduction in C. diff. relapses. All 116 study subjects had suffered a minimum of three bouts of C. diff. and were randomly assigned a poop swap via either the capsule or colonoscopy.

It must have been an exercise in “mind over matter” for the patients who were required to swallow down 40 capsules in one sitting, which took an average of a half-hour to an hour. The reduction in C. diff. relapse was determined after 90 percent of the patients remained C. diff.-free after 12 weeks. Preeti Malani, professor of medicine at the University of Michigan, who wrote an editorial to go with the study, noted:

“Based on this study, I think it would be very reasonable to think about fecal transplant capsules as your preferred approach. If it were myself or a family member, I think avoiding colonoscopy would be helpful.”

Still, Melani and other researchers believe more studies are needed, not only to confirm the results found in Kao’s study, but also to get a better understanding of how fecal transplant works.

Kao herself says she plans to study all the components of fecal transplants to get a clearer picture of what exactly helps control C. diff. Besides C. diff., microbe transplanting via a capsule is also a therapy currently used for obesity, diabetes, colitis and Crohn’s disease. It’s a way gut bacteria can be positively linked to lowering the risks of such disorders and conditions as obesity, allergies, asthma and even some mental illnesses.

A Protocol Still Unapproved by Government Agencies

While fecal transplantation may at first glance come across as quackery of the highest degree, once you understand the process, it’s clear it’s a successful way to swap bad bacteria for good.

Kao, whose first reaction upon the successful trial, quipped, “It’s absolutely insane. We just don’t see (this) kind of efficacy with drugs,”11 added that she believes the favorable outcome of the fecal transplant pills will “transform” the way conventional medicine at large thinks about the unconventional therapy. She listed several of the benefits over the current protocols of antibiotics or surgery. Poop pills are:

  • Noninvasive
  • Less expensive
  • Free of the risks associated with sedation
  • Can be done in a doctor’s office

As it stands, the Food and Drug Administration (FDA) hasn’t yet given the proverbial green light to fecal transplants.It does, however, permit doctors to perform the therapy for patients not currently responding favorably to other forms of remediation, but only as long as patients understand that the poop pill is still being scrutinized as a viable treatment.

In addition, CIDRAP notes that in March 2016, the FDA proposed regulations that would further restrict use of FMT by requiring that either the patient recipient or the treating clinician personally know the donor — a restriction that, as yet, is not finalized.

Interestingly, among patients who’ve been asked what they thought of the idea of swallowing poop pills, most responded that after all was said and done, it wasn’t too bad. Newsweek observes that two-thirds of the 57 patients who got the pills described the experience as “not at all unpleasant,” while 44 percent of the 59 patients who underwent FMT via a colonoscopy were not as positive.

Perhaps when the patients remembered the alternative — that to them, poop pills were a hero of sorts due to their ability to stop the unstoppable on the other end — the therapy could only be seen in a positive light. As Kao concluded, “We still don’t understand what’s going on, and in these other conditions it’s not as clear-cut that the disturbance in the bacterial composition is the cause. Stool is such a complex mixture.”12

– Sources and References



Lyme/MSIDS patients use antimicrobials and have to be concerned with gut health.  In fact, antibiotic resistance and adverse events are often cited by some physicians as to why they shouldn’t be used or only in extremely limited amounts.  FMT is a clear and concise answer for this potential problem, and I pray people are taking note.  

Any treatment demands a risk/benefit assessment and until the denialists understand the severity/complexity of Lyme/MSIDS, patients will be swimming against the current and having to fight for proper/effective treatment which is much more than 21 days of doxy.  Doxy, for instance, will not touch numerous coinfections and has been found to throw the spirochete into the non-cell wall form to rear its ugly head later.

10 points about suing the architects of Lyme policy—as a task force meets to review it

by Mary Beth Pfeiffer  12/07/2017

5a276ba6140000f66fb6baafFor nearly a generation, a small group of physician-researchers has directed how Lyme disease is diagnosed and treated in the United States, Europe and, as the disease spreads, Canada and Australia too. As a result, US insurance companies routinely refuse to pay for antibiotic treatments longer than 28 days. Doctors have been punished for prescribing them. Patients have been told their lingering problems are psychological or they have other sickness.

Now, a lawsuit asserts that the design and implementation of Lyme disease care–as outlined in the treatment guidelines of the Infectious Diseases Society of America—is rooted in corruption. It asserts that key architects of Lyme policy, naming seven physician-researchers, took money from and worked with insurers to develop guidelines that allowed claims to be denied. The conspiracy involved efforts to belittle the legitimate complaints of patients, the suit asserts, and to stifle competition from doctors who did not follow the IDSA guidelines, which the suit terms “a predatory device.”

The lawsuit is a stunning development in the contentious and rapidly shifting world of Lyme disease science and politics. It was filed just a month before a 14-member federal working group is poised to meet—in Washington next Monday–with a mission to scrutinize Lyme disease care and policy in America. Significantly, a defendant in the lawsuit, Dr. Gary Wormser, was also a member of the working group; his name was removed from the roster this week, four days after 10,000 people signed a petition by opposing him. The development may indicate the burgeoning strength of a movement to change the way Lyme disease is viewed or merely Wormser’s, and the government’s, aversion to the controversy he literally would bring to the table.

The petition cited conflicts of interest reported by Wormser, who is lead author of the IDSA treatment guidelines. They include receiving research grants from private companies, owning equity in a company that has developed a Lyme disease test, and testifying in malpractice cases involving Lyme disease–an issue raised in the lawsuit. Wormser and his co-defendants did not provide comment for this article, nor did eight insurance company defendants. Federal officials said Wormser ”declined the invitation” to serve on the task force.


The original listing for Dr. Wormser’s appointment to the Tick-Borne Disease Working Group, which was removed Dec. 5.

Dueling science not the issue
While the petition made no mention of the 53-page lawsuit, its focus was clearly the motivation behind Wormer’s outsized influence over Lyme care. Here’s what you should know about the litigation against the IDSA, gleaned from my discussions with lawyers, physicians and scientists.

1. The court will not be asked to rule on the dueling science of whether Lyme disease can be chronic. Rather, the case will offer another view of Lyme disease besides the IDSA’s, which holds that short-course antibiotics kill the infection. Evidence will be offered showing patient improvement on longer-term antibiotics, in particular as multiple laboratory studies show the Lyme bacterium difficult to kill.

2. In that vein, the case won’t assert that the IDSA guidelines are intrinsically flawed, as many patient groups believe. Instead, it will acknowledge that the guidelines may work for a segment of early-treated patients. Other protocols, such as those developed by the International Lyme and Associated Diseases Society, should play a legitimate role in care, it will assert.

3. Evidence will be offered to show that alternative views on Lyme disease were systematically squelched in the development of the IDSA guidelines, in a monopolistic effort driven, the suit asserts, by money. “(B)y excluding physicians with differing opinions from participating in its panel and suppressing scientific evidence, the 2006 IDSA Guidelines not only adversely affected IDSA competitors—physicians who treat chronic Lyme disease with long-term antibiotics—but also unreasonably restrained the Lyme treatment market.” The suit contends insurers and guidelines writers worked together to report physicians treating outside the IDSA guidelines—“in an attempt to strip them of their medical licenses.” The insurers then paid the IDSA defendants to testify against doctors—the suit estimates 50 were professionally disciplined—who did not follow the IDSA course of care.

4. These are explosive charges that remain to be proven. The well-connected, 11,000-member IDSA won’t go down without a fight, nor, to be sure, will eight insurance companies and the seven so-called “IDSA panelists” named in the conspiracy, at least one of whom repeated IDSA axioms in a recent article on the lawsuit.

5. Initial efforts to dismiss the lawsuit will likely assert that the Racketeer Influenced and Corrupt Organizations Act—the one the civil lawsuit says was violated—does not apply in this case or that the suit does not state a legitimate claim. Legal experts predict it will survive this legal tactic. The lawsuit will have more trouble surviving attempts by the opposition to seek “summary judgment,” namely in which a judge is asked to rule on the strength of the case–and whether it should go to trial.

6. Should it go forward, the discovery phase, in which parties trade documents, will be key to connecting the dots and proving the alleged conspiracy, which the lawsuit calls “current and ongoing.” The suit asserts, “Dr. Gary P. Wormser, Dr. Raymond J. Dattwyler, Dr. Eugene Shapiro, Dr. John J. Halperin, Dr. Robert B. Nadelman, Dr. Leonard Sigal, and many others were paid large sums of money by the Insurance Defendants in consulting fees, in expert witness fees, and to review, and deny, insurance coverage claims related to Lyme disease.” While the suit provides an example from a published legal case, it will need far more to flesh out what it says was a “pattern of racketeering.” It asserts that five IDSA panelists received payments from insurance companies for 22 years and one for 11 years. A seventh defendant, Lyme pioneer Allen Steere, was paid to endorse limits on Lyme disease treatment, the suit asserts, pointing to guidelines Steere published in an insurance medicine journal and a paper he wrote for insurance medical directors. Even if proof of the payments is obtained, lawyers for the plaintiffs must show the payments were motivating factors that shaped American Lyme disease care–a huge leap.

7. Within weeks of the lawsuit filing, the U.S. Centers for Disease Control and Prevention removed its website references and links to the IDSA care guidelines. A CDC statement issued to me explained: “It has been over a decade since the IDSA guidelines on treatment of Lyme disease, developed in 2006, were published. Since then, additional published research further informs Lyme disease treatment.” Nonetheless, the CDC’s advisories still strongly reflect IDSA tenets. Only last August, a CDC spokesperson referred me to the guidelines when I was researching my upcoming book, even though the 11-year-old guidelines had been removed from the National Guidelines Clearinghouse.

8. Although physicians and advocates who question IDSA policies were gratified by the language in the lawsuit, some were nonetheless leery of the lawsuit’s approach. Two experts were fearful that assertions of Lyme-caused illness might be unprovable or come off as wildly exaggerated—in particular a claim that Lyme doctors know that untreated patients “will eventually die from Lyme disease.” A third expert believed the lawsuit could succeed on evidence showing an IDSA effort to silence competing voices and science; the question is whether that will be enough to win under a statute normally applied to organized crime.

9. While the lawsuit pits 25 patients against a powerhouse backed by major medical journals–the IDSA–this is no David-and-Goliath scenario. The plaintiffs have three well-heeled firms on their side who have agreed to take on a case without any money upfront. The firms include one that secured an acquittal for pitcher Roger Clemens after charges of perjury related to alleged steroid use and another that has won multi-million-dollar sums against Dow Chemical and Ford Motor Co. Lawyers involved in the case invested perhaps a year scoping out the facts before filing suit.

10. Despite the lawsuit, the IDSA still intends to release updated Lyme disease guidelines this spring. The review process, involving many original guidelines writers, has been seen by Lyme patient advocates as an attempt to reinforce views that the disease is not chronic and to continue existing treatments.


The lawsuit refers to insurers paying IDSA physician researchers to uphold their “arbitrary guidelines.”

Timing may be everything
Attorneys on the suit needed to convince themselves there was a case before taking it on. They are optimistic. “There is a circular relationship that exists between the IDSA panelists and the insurance companies,” the suit’s lead attorney, Gene Egdorf, said, “in which these IDSA panelists come out with guidelines and the insurance companies pay them to defend them. It’s a symbiotic relationship, and it comes from money.”

If he’s right, the IDSA’s control over Lyme disease care may end. That’s a big if, but timing may be key. Society, medicine, and, even, the courts may be willing to accept that there is a different, more complicated version of Lyme disease than the one proffered by the IDSA and embraced by the CDC. Claims of ongoing, Lyme-induced symptoms have been bolstered by new research showing the failure of common antibiotics against the Lyme pathogen. Most recently, these breakthroughs were embraced by a group of scientists at New York Medical College, where the leading authors of the Lyme disease guidelines are based.

In the last 20 years, Pat Smith, president of the Lyme Disease Association and a feisty long-time patient advocate, met with lawyers two or three times to discuss a possible class-action lawsuit on behalf of aggrieved Lyme patients. “The timing wasn’t right,” she told me. “Now there’s so much scientific evidence…Now if you put it on a scale, we have a lot more to show our point of view.”


Selected comments on the RICO lawsuit
Here are comments provided to me in response to the lawsuit:

Infectious Diseases Society of America:

“While we cannot comment on pending legal matters, we want to assure you that the priority of the Infectious Diseases Society of America (IDSA) is to promote human health through excellence in infectious diseases research, education, prevention, and patient care.

In developing guidelines for the treatment of infectious diseases, including Lyme disease, IDSA authors rely on evidence-based research performed according to widely accepted scientific standards and consider, when appropriate, anecdotal evidence. The published guideline, “The Clinical Assessment, Treatment, and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis,” reflects the best information science provides for the broad range of physicians who might treat a patient with symptoms of Lyme disease.

IDSA is a non-profit organization of more than 11,000 distinguished physicians, researchers and healthcare workers who specialize in a wide range of infectious diseases. The Society is committed to listening to our members and patients while conducting the necessary review and synthesis of evidence to ensure our guidelines promote safe and effective care.”

U.S. Sen. Richard Blumenthal, who leveled conflict-of-interest charges against the IDSA in 2008 as then-Connecticut Attorney General:

“Lyme and other tick-borne diseases continue to plague communities across the country. The allegations raised in this lawsuit further underscore the urgent need for research into this growing public health threat. That is why I fought to ensure that the Department of Health and Human Services worked expeditiously to convene the Tick-Borne Disease Working Group as legally mandated in legislation I authored. We need federal agencies, physicians, researchers, patients and advocates at the table together working to cure these debilitating diseases.”

Lorraine Johnson, Executive Director of

“Why should IDSA researchers, who do not examine or treat these patients and do not see the suffering caused by their guidelines when patients remain ill, be setting the medical standards for the disease? The IDSA guidelines have been used to further the cost-cutting interests of insurers and destroy the careers of physicians who actually examine and treat the patients and can see whether or not a treatment is working.”

Pat Smith, President of the Lyme Disease Association and a member of the Tick-Borne Disease Working Group:

“This has been a long time coming; it shows that what patients and advocates and treating physicians have been saying for decades have been saying for decades is absolutely true…These entities have intersecting agendas and they have used those to prevent patients from getting the treatment that they needed to get better.”

Dr. Kenneth Liegner, a leading Lyme disease physician who is cited in the lawsuit as having faced investigation by licensing officials. The twin probes lasted several years each; he was never charged:

“Being ‘investigated’ had a profound impact: the vast resources of the State against one as an individual. Psychological impact; emotional impact; impact on family; impact on ‘quality of life’; financial impact; disruption of normal routines and very significant necessary allocation of time in order to defend oneself; conferring with health care law attorneys; limitation of time that would ordinarily be devoted to ‘patient care’ activities, etc. I was able to successfully defend what I did and why because of my familiarity with the scientific and medical literature and meticulous record keeping.”

Candice Burns Hoffmann, CDC spokesperson, on removal of links to the IDSA guidelines, weeks after the lawsuit against the IDSA was filed:

“It has been over a decade since the IDSA guidelines on treatment of Lyme disease, developed in 2006, were published. Since then, additional published research further informs Lyme disease treatment. As a result, CDC is updating its website with treatment information more immediately helpful to health care providers and people with Lyme disease. We are aware that IDSA is working on updates to its guidelines. Because CDC is not involved in this effort and does not know when these guidelines will become available, we have chosen to share information that may be helpful to health care providers and people with Lyme disease. We look forward to reviewing the new IDSA guidelines once released.”


More on lawsuit:

And yet another on Lyme testing: