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Lyme Patients File Civil Suit Against Insurers/IDSA/IDSA Panelists

The Lyme Disease Association (LDA) has announced that on November 10, 2017, twenty-three Lyme patients/estates of patients filed Civil Action No. 17-cv-190 in the US District Court for the Eastern District of Texas, Texarkana Division─4 counts under Racketeer Influenced and Corrupt Organizations Act (RICO) and one count of antitrust violations of the Sherman Act. The plaintiffs are asking for actual damages, treble damages, reasonable attorney’s fees, and court costs and have demanded a jury trial. The defendants are:

• Infectious Diseases Society of America (IDSA)
• Blue Cross and Blue Shield Association
• Blue Cross and Blue Shield of Texas
• Anthem Inc.
• Aetna Inc.
• Cigna Corp.
• Kaiser Permanente Inc.
• United HealthCare Services Inc.
• UnitedHealth Group Inc.
• IDSA Panelists: doctors Gary P. Wormser, Raymond J. Dattwyler, Eugene Shapiro, John J. Halperin, Robert B. Nadelman, Leonard Sigal, & Allen Steere.

Discussion of the investigation of the IDSA by then Attorney General Richard Blumenthal (now Senator) is presented, testimonies before governing bodies of an advocate and a doctor are included, and cases of defendant patients are presented as well as cases of some physicians who were charged by state medical boards.

One excerpt from the Factual Allegations Common to All Counts & Claims is below: (p.23-4)

The acts of the defendants form a ‘pattern of racketeering’

99. The IDSA, Insurance Defendants, and the IDSA Panelists, acting through their officers, agents, employees and affiliates, committed numerous predicate acts of “racketeering activity,” as defined in 18 U.S.C. §1961(5), prior to and during the period made the basis of this suit, and continues to commit such predicate acts, in furtherance of their scheme to prevent treatment of chronic Lyme disease and to prevent the proper testing of potential Lyme disease patients, including including (a) mail fraud, in violation of 18 U.S.C. §1341, and (b) wire fraud, in violation of 18 U.S.C. §1343. Such predicate acts include the following: mailing, causing to be mailed, knowingly agreeing to the mailing of various materials and information, and/or wiring information including, but not limited to, correspondence regarding the following: fraudulently and wrongfully claiming lack of insurance coverage for chronic Lyme disease; fraudulently and wrongfully denying insurance coverage to people with chronic Lyme disease; issuing false and misleading EOB’s to patients with Lyme disease; fraudulently and wrongfully claiming all Lyme disease patients can be easily treated and cured with short-term antibiotics; fraudulently and wrongfully claiming Lyme disease patients only have Lyme disease if they exhibit an EM rash or test positive with a two-tier serology test; wrongfully and illegally reporting doctors to their medical boards for treating chronic Lyme disease; fraudulently and wrongfully misleading people with Lyme disease, and their doctors, by classifying their chronic Lyme disease as a mental disorder; fraudulently and wrongfully misleading people with Lyme disease, and their doctors, by classifying their chronic Lyme disease as a different physical condition such as chronic fatigue syndrome or fibromyalgia; and fraudulently and wrongfully enforcing the IDSA guidelines even when doctors determine a patient requires long-term antibiotic treatment.

Click here for a news release on suit

Click here for complete lawsuit

Newsletter Archive



Animal Studies Show Spirochete Persists After Lyme Treatment

A number of animal studies have shown that the Lyme spirochete has survived antibiotic Lyme treatment. A brief review of these studies can be found in the House Foreign Relations Committee testimony of Stephen Barthold, DVM, PhD, University of California, Davis.

See link:

Congressman Chris Smith (NJ-4), was the Chair of the hearing, in which the Lyme Disease Association President also testified.

Click here for article on the hearing

Click here for Oral Testimony by LDA President, Pat Smith

Click here for Written Testimony by LDA President, Pat Smith

Click here for all LDA Testimonies, Speeches & Positions



Conference Registration

This is the conference registration.

Lyme Comm. Unites: Protect Patient Rights

UPDATE 5-6-15: Click here for LDA/LDo Press release on IDSA guidelines process

In a move designed to spotlight concerns about the Infectious Diseases Society of America (IDSA) guidelines’ development process, groups in the Lyme community nationwide have come together to make their voices heard. The effort to date consists of three different letters which were signed on by multiple groups representing dozens of states across the U.S. and were then sent to the US House of Representatives Lyme Disease Caucus, the US House of Representatives Energy & Commerce Committee, and the IDSA itself, which requested input into its newly structured guidelines development process.2009-10 LDA Aff Meeting 148kb2009 LDA file photo depicts Lyme leaders from across the U.S. at an LDA Affiliate Meeting in Maryland.*

Citing concerns about the lack of patient representation− a concept the Institute of Medicine (IOM) has endorsed for guidelines’ development in general− and also the lack of clinicians in the trenches who are treating not only Lyme but the often concurrent tick-borne diseases seen in many patients, the groups have requested specific actions to be taken by each letter recipient.

Further actions may be forthcoming by the Lyme Community. As other actions occur, we will post them.


NOTE: The IDSA has just extended its Lyme Guidelines Process Comments until April 24th. Anyone who has not replied to the IDSA directly can go to their website and register their comments. Click here for IDSA website.



Click here for Letter from US House of Representatives Lyme Disease Caucus to the IDSA



Click here for Letter to US House of Representatives Lyme Disease Caucus on the proposed new IDSA Guidelines process from 57 Groups

Click here for Letter to US House of Representatives Energy & Commerce Committee asking for a hearing on issues surrounding the IDSA Guidelines process from 57 Groups

Click here for and Lyme Disease Association Letter of Comments to IDSA Guidelines process from 67 Groups

Click here for LymeQuest Submission on behalf of 22 groups & 67 groups #

# NOTE: IDSA extended its filing time but would not permit LDA/LDo to submit additional comments with additional groups signed on. So LymeQuest submitted the additional comments to IDSA on behalf of all the groups, total of 89 (22 + 67).



Click here for’s IDSA Guidelines Patient Survey Results



Click here for AAFP President
Click here for AAN President
Click here for AAP President
Click here for ACR President
Click here for AMMI-CA President
Click here for CNS President
Click here for ESA President
Click here for ESCMID President
Click here for PIDS President
Click here for ACP President
Click here for IDSA President

+NOTE: Each mailing contained the cover letters shown above and copy of the two group submissions to IDSA.



Click here for comment letter to IDSA from the UK

Click here for comment letter to IDSA from Deutsche Borreliose Gesellschaft e.V. (German Society of Lyme Borreliosis)



Click here for history of Lyme Group actions

Click here for IDSA Project Plan: Guidelines for the Prevention, Diagnosis, and Treatment of Lyme Disease by the Infectious Diseases Society of America, the American Academy of Neurology, and the American College of Rheumatology (Note: By clicking this link, you will leave the LDA website and be on the IDSA website)


*The groups represented in photo above may or may not be signed on to one or more of the letters





AG’s Investigation: Flawed Lyme Guidelines

May 1, 2008, Atty. Gen. Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Iinfectious Diseases Society of America’s (IDSA) process for writing it’s 2006 Lyme disease guidelines and the IDSA has agreed to reassess them what the assess assistance of an outside arbiter.  

Click here for press release.

IDSA Guidelines Panel Decision 4-22-10


We are not surprised by the conclusions reached by the IDSA review panel but are certainly disappointed. It is certainly suspect that in considering a disease with numbers on the rise (250% increase from 1993-2008), one which is so highly controversial and with unsettled and “undone” science, that the panel would vote “lockstep” (8-0) except for one dissenting vote to uphold all of the original recommendations. The national Lyme disease Association (LDA) and its 35 associated organizations publicly expressed their concerns about bias in the panel selection throughout the process, including the selection of the chair, who is a former president of the IDSA, and the pronounced lack of community treating physicians.

We note with interest that IDSA separated out the only real area of contention among its panel, a 4-4 vote, and because it did not fit the required voting process, IDSA alleged that this was NOT a recommendation they needed to review, but only a statement in their Guidelines executive summary that the Attorney General asked them to review. It is a crucial statement on testing, the essence of which appears throughout the guidelines and is most often used by doctors and insurers to prevent patients receiving diagnosis and treatment. The panel’s apparently improper first vote on this issue was uncovered by a FOIA, (freedom of information act) on the panel voting process. The vote was 4-4, not meeting the supermajority required to pass it, so they characterized the testing issue as a non recommendation, which they claim, does not require a supermajority.

The IDSA’s empty “political” rhetoric, adherence to these guidelines is only voluntary, certainly we support clinical judgment, is belied by their statement “Based on current research for patients with non specific symptoms that may be seen in may illnesses…it would be a deviation from “best fit” [association between illness and likely diagnosis established by medical evidence] to attribute such symptoms to Lyme disease in the absence of more specific clinical features or laboratory results…All Lyme disease clinical findings including erythema migrans can be seen in diseases other than Lyme…It would thus be clinically imprudent to make this diagnosis of Lyme disease using these non specific findings alone.”

The IDSA’s position at the onset of this investigation and settlement process has been that the Attorney General of Connecticut’s investigation was interfering in medical practice rather than the guidelines formation process. To apply logic to their way of thinking, any changes in the Guidelines would admit wrongdoing on their part and set a precedent for future government actions in creation and development of their many guidelines. So instead, the IDSA panel upheld all the recommendations, failed to provide after each recommendation the specific references that were considered and used to justify upholding each recommendation (the resources are lumped at the end of the paper). We consider it striking that they provides lists of items that need to be considered in the “next” upgrade of their guidelines, thereby relieving themselves of responsibility of acknowledging that changes are needed to these current guidelines.

The IDSA admits to receiving a large volume of case reports & case series that attested to “PERCEIVED” clinical improvement with long term treatment. One would assume that in most cases, doctors were perceiving the improvement in patients, and thus their years of clinical judgment would carry significant weight. Yet the IDSA excluded all of that evidence as not justified. IDSA also discounted the controlled studies which did indicate improvement after long term antibiotics

Patients cannot wait for the entrenched medical establishment to address the problems with this disease. They need treatment and relief now. The ratification of these guidelines by IDSA becomes another nail in the coffin for those afflicted with Lyme disease. We call upon the Attorney General of Connecticut to examine the entire process to determine compliance with his stated requirements and to take further action should grounds be found to do so.

Pat Smith

Analysis: Why Klempner Study is Not Useful to Rule Out Benefits of Long-Term Treatment

Analysis: Why Klempner Study is Not Useful to Rule Out Benefits of Long-Term Treatment
Allison DeLong, Brown University
I. The clinical trial by Klempner et al. cannot be used to assess the effectiveness of re-treatment of Lyme disease in patients with continued symptoms following standard treatment
A. The trial was poorly designed
1.   The sample sizes were too small to detect clinically meaningful treatment effects (the study was underpowered).
a.   Determined by examining the ability of Klempner’s study to detect levels of improvement that were found to be of value in studies of other chronic illnesses.
2.   The (Klempner) presumed treatment effect for sample size calculation was so large for one of the two primary outcomes (mental score) that Lyme patients would have been forced to perform better than the general U.S. population at follow-up.
a.       E.g.− The trial was terminated early because it was unlikely that the presumed treatment effects would be statistically significant.
1)   Since people were not going to achieve Klempner’s unreasonable requirement for improvement (see #2), then this poorly designed trial should have been terminated.
3.      Lack of statistical significance cannot be used to infer ineffectiveness in a poorly designed study. This is especially true here since Klempner’s confidence intervals for the treatment effects contain clinically meaningful values.
a.   Because meaningful values are in the confidence intervals, you can’t say treatment is ineffective.
      B. The trial data were poorly analyzed (summarized rather than analyzed)
1.   The statistical method used was less likely to obtain a statistically significant result than recommended methods for analyzing clinical trials (e.g. omitted ½ the data, categorized the outcomes leading to loss of information).
      a.  30 day, 90 day measures of outcome were not included in the analysis
      b.   If a longitudinal analysis of uncategorized data was done (all data included), it would have increased the ability to detect a significant treatment effect.           
2.      Klempner’s treatment effects cannot be interpreted for clinical meaning. Patients with Lyme have symptoms that wax and wane. For example, patients classified as “improved” could have unchanged health status, patients classified as “unchanged” could have improved.
                   a.   They categorized people rather than examining individual scores− it is unknown how treatment affected the mean outcomes in the placebo vs. antibiotic groups.
3.      The findings are likely biased (i.e. wrong) because the analysis didn’t adjust for baseline, and baseline scores differed by arm, and there was an inadequate presentation and analysis of participants lost to follow-up. Klempner does not say how many were lost to follow-up, and they were simply placed in a “worsened” category.
Allison DeLong, MS Biostatistician Brown University Center for Statistical Sciences Providence, RI, provided an in-depth analysis of the Klempner study at the IDSA hearings in Washington, DC on July 30, 2009. A video of that presentation can be found on The Lyme Disease Association thanks Ms. Delong for working with LDA to provide this shortened simplified analysis.

© 2009 Lyme Disease Association, Inc.
PO Box 1438
Jackson, NJ 08527