Madison Area Lyme Support Group

Please share your experience living with Lyme disease!

The NH Lyme Disease Study Commission (2020-2021) concluded that Lyme disease testing (two-tier serology) is unreliable in ALL STAGES of disease:

Final Report
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/reports/RSA%20141-C%20Lyme%20Commission%20Study.pdf

Amendments to the Final Report
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/reports/Proposed%20Amendments%20to%20the%20Final%20Report.pdf

Laura Hovind CEO/Executive Director, truthcures.org testified on Aug 23, 2021 (video)
https://rumble.com/vmyzi9-nh-commission-to-study-testing-for-lyme-and-other-tick-borne-diseases-08.23.html

If you have been harmed by faulty Lyme disease tests, please consider taking the following survey as TruthCures moves forward with legal remedies for the harm caused by the lack of a valid Lyme disease diagnostic:

Survey:

Effects of Lyme Disease test Failure
https://www.surveymonkey.com/r/JF5LWSJ

Laura Hovind’s letter to the Chair of the NH Lyme Disease Study Commission:

Dear Representative Cushman,

Thank you for your interest in improving Lyme disease diagnostics and advocating for the rights of Lyme sufferers in New Hampshire and beyond. I am the founder of a 501(c)3 action-oriented, patient-led Lyme organization called TruthCures. Our singular focus is rectifying the fraudulent case definition which was adopted by the CDC and FDA to facilitate late-phase trials and approval of SmithKline/Yale’s vaccine, LYMErix.

Without the falsified case definition and reverse-engineered testing scheme, they would not have been able to claim efficacy in phase III LYMErix trials. Despite the vaccine having been withdrawn after three years, the fraudulently adopted diagnostics remain, nearly three decades later. The result of this fraud is that the sickest patients are unable to obtain a Lyme diagnosis. Worse still, the perpetrators have spent decades propagating disinformation about Lyme to cover their tracks. They downplay the disease’s seriousness, dismiss victims as “loonies” or hypochondriacs, and abuse their power to ensure the current dire situation of zero-care is perpetuated.

In June 1994, the FDA’s Vaccines & Related Biologics Product Advisory Committee (VRBPAC) held a meeting where the stated primary question was, “Is the CDC case definition for Lyme disease appropriate for a pivotal efficacy trial?” Participants of that meeting included CDC and FDA officers, and representatives of all three pharmaceutical companies that had Lyme disease vaccines in development, among others.

Raymond Dattwyler, a researcher/physician from State University of New York – Stony Brook stated that seronegative patients are sicker: “The ones that failed to mount a vigorous immune response tended to do worse, clinically. So, there was an inverse correlation between the degree of serologic response and the outcome. So, individuals with a poor immune response tend to have worse disease.” He was arguing that the proposed testing scheme—to require a broad spectrum of borrelial antibodies for positive diagnosis—was antithetical to the science which had demonstrated those who produced few or no Lyme antibodies were sicker. The CDC published this fact in the January 25, 1991 “Lyme Disease Surveillance Summary” by the Centers for Disease Control Division of Vector-Borne Infectious Diseases. They described the difficulty in diagnosing Lyme disease using the serology methods available at the time. They found “no association between the [1988] case definition and seropositivity” but that late Lyme arthritis cases were associated with seropositivity. That means the CDC was well aware of seronegative Lyme disease. In other words, an indeterminate proportion of victims would not be able to test positive despite being infected.

Allen Steere, credited as one of the discoverers of Lyme disease, concurred. Steere’s 1993 report, “Association of Treatment-Resistant Chronic Lyme Arthritis with HLA-DR4 and Antibody Reactivity to OspA and OspB of Borrelia burgdorferi” went a step further, describing a genetic association between a high-antibody response and the arthritis outcome. Arthritis patients with specific “HLAs” showed an antibody response while only one of the patients with meningitis, neuroborreliosis or a bullseye rash (which by itself is diagnostic of Lyme disease) showed antibody reactivity.  “When single serum samples from 80 patients with Lyme arthritis were tested, 57 (71%) showed antibody reactivity to recombinant Osp proteins; in contrast, none of 43 patients who had erythema migrans or Lyme meningitis (P < 0.00001) and 1 of 5 patients who had chronic neuroborreliosis but who never had arthritis (P = 0.03) showed antibody reactivity to these proteins.”

Lyme disease diagnostics were rigged to identify those cases that are genetically predisposed to mount a strong immune response and experience minor symptoms of arthritis. Meanwhile, the meningitis and neuroborreliosis cases—those who now identify as “chronic Lyme” victims—were left to fend for themselves without a diagnosis, treatment, or even belief from doctors that they are actually sick. Documents that support these claims are linked within my Website page, https://www.truthcures.org/testing-fraud How has the CDC perpetuated the fraudulent diagnostic scheme? In a bizarre exercise of circular logic, their Lyme serum repository screens samples using their bogus case definition. All research, all new test kits, all vaccine trials, all inclusionary/exclusionary criteria for anything Lyme-related is corrupted and excludes the people who are sick. Unless the CDC case definition is rectified, we will forever be trapped in the false reality created by SmithKline, Yale, and a cadre of scientists who sought to profit from the Lyme epidemic without regard for human suffering.

TruthCures met in 2019 with the Assistant U.S. Attorney and FBI Healthcare Fraud Unit in Boston. We were encouraged to seek whistleblower representation, but we are not convinced a qui tam case is viable, due to the public disclosure bar and other issues. We continue to seek legal representation so we can pursue justice for all victims in whatever type of action is most expedient. In addition to legal pursuits, I am interested in working with any individuals or entities committed to righting this horrendous wrong. Please feel free to contact me by email or by phone if I can be of any assistance with the work of your commission. In addition, Carl Tuttle, a member of the commission, is a friend, and he understands much of what I’ve laid out for you here. Thank you very much, Laura Hovind CEO/Executive Director, truthcures.org