According to Lyme Advocate Carl Tuttle, legislation has not helped end the unimaginable pain and suffering that Lyme/MSIDS causes for the victims of this injustice. He recommends we all write our own letters supporting a congressional investigation and send copies to Chris Smith (Rep. New Jersey) and Collin Peterson (Rep. Minnesota) as well.
Also, Jenna Luche-Thayer has written a review of House Bill 5878 which will supposedly, “Provide for a national strategy to address and overcome Lyme Disease and other tick-borne diseases, and for other purposes.” She too is concerned whether it will truly serve the Lyme patient community or just “enrich certain individuals and entities.” In the following link she exposes Working Group Chair John Aucott’s 2015 patent for measuring cytokines and the fact he could make money while possibly affecting if and which patients receive extended antimicrobials and biologics. https://madisonarealymesupportgroup.com/2018/05/18/conflicts-of-interest-in-tick-borne-disease-working-group/. (Go here for details)
Following is Tuttle’s letter as an example. Please use your own story, details and facts when writing your letter:
May 20, 2018
The Honorable Chris Smith
United States House of Representatives
2373 Rayburn House Office Building
Washington, D.C. 20515
Dear Representative Smith,
Thank you for recognizing the seriousness of Lyme disease! Patient experience as you know is describing an illness that is destroying lives, ending careers, causing death and disability while leaving victims in financial ruin.
Lyme disease is capable of producing sudden death with no warning signs; [1,2,3] heart damage requiring transplant,  paralysis with seizures,  lymphoma  and persistent infection after antibiotic treatment [7,8,9,10,11] along with congenital transmission  and ability to create wheelchair bound patients  yet there are no Public Service Announcements informing the public that you could become horribly disabled or die from Lyme disease.
“Spirochetes disseminate to the lymph nodes, bone marrow, spleen and brain within a week of infection [A]. Lymph node germinal centers, where B cells are supposed to mature and be assigned an immune system function, are rendered incompetent [B]”
A. Lymphoadenopathy during Lyme Borreliosis Is Caused by Spirochete Migration-Induced Specific B Cell Activation
B. Suppression of Long-Lived Humoral Immunity Following Borrelia burgdorferi Infection
*Immune suppression allows latent viruses to rear their ugly heads (Epstein Barr, herpes etc.)
Through an elaborate racketeering scheme the disease has been downplayed because it became “too expensive to treat” as outlined in the SHRADER & ASSOCIATES, LLP court document.
The court document can be found at the following link:
We are dealing with a life-altering/life-threatening infection with faulty/misleading antibody tests, inadequate treatment, no medical training and absolutely no disease control; a public health disaster. And to make things worse, our blood supply is most likely full of Lyme disease.
A plague denied; essentially classifying this disease as a low-risk and non-urgent health threat.
A second lawsuit was filed recently against the CDC; additional evidence that the Centers for Disease Control here in the United States has mishandled Lyme disease for the past three decades. Dr. Sin Lee of Milford Molecular Diagnostics identified a case of chronic Lyme disease through his DNA sequencing technology and published his findings. After Lee published this case all communication with the CDC ended abruptly. It appears that the CDC does not want direct detection methods for the diagnosis of Lyme as this would upend the status quo that chronic Lyme does not exist.
UNITED STATES COURT OF FEDERAL CLAIMS Case No. 18-686C
$57.1 Million Lyme Disease Lawsuit Filed Against CDC
I would like to call attention to the attached pilot study recently identifying chronic Lyme disease in twelve patients from Canada.
Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease
All of these patients were culture positive for infection (genital secretions, skin and blood) even after multiple years on antibiotics so there was no relief from current antimicrobials. Some of these patients had taken as many as eleven different types of antibiotics.
Persistent Lyme disease has been intentionally/deceitfully suppressed for decades as described in the attached letter to past CDC Director Brenda Fitzgerald, MD:
The dishonest science here in the U.S. has denied chronic Lyme which stifled needed research to find a curative approach. Now the rest of the world is suffering. Lyme disease belongs in the same health threat category as AIDS.
Carl Tuttle is the organizer of the Change.org petition calling for a congressional investigation into the mishandling of Lyme disease. There are nearly 60,000 signatures from all across America and over twenty other countries. The primary focus of this petition has been to expose the deception and scientific misconduct while highlighting the fact that Lyme is life-threatening/life-altering ruining lives worldwide while foreign health officials follow what has been deceitfully established here in the United States.
Calling for a Congressional investigation of the CDC, IDSA and ALDF
There are now over a thousand pages of comments from horribly disabled Lyme patients all across America.
A congressional investigation is long overdue Representative Smith, just as Senator Ted Kennedy exposed the CDC’s Tuskegee Syphilis Crime.
The study of untreated syphilis in the negro male.
LEGISLATION FOR LYME DISEASE HAS DONE NOTHING TO ALEVEATE THE UNIMAGINABLE PAIN AND SUFFERING CAUSED BY LYME DISEASE.
Please initiate a congressional investigation of the CDC, IDSA and American Lyme Disease Foundation with subpoena power to expose the motivation behind the downplaying of a disease destroying countless lives nationwide so that this travesty will never be repeated. Why was evidence of persistent infection suppressed for three decades?
Important: You or a loved one is just a single tick bite away from experiencing this travesty.
Carl Tuttle (Representing New Jersey Lyme Patients who have signed the petition)
Lyme Endemic Hudson, NH
References: (Please read them!)
1. Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis. (March 2016)
“Fatal Lyme carditis caused by the spirochete Borrelia burgdorferi rarely is identified. Here, we describe the pathologic, immunohistochemical, and molecular findings of five case patients.”
2. CDC Case Study #1: Three Sudden Cardiac Deaths Associated with Lyme Carditis: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6249a1.htm?s_cid=mm6249a1_w
3. CDC Case Study #2: A case report of a 17-year old male with fatal Lyme carditis
4. Professor Neil Spector: Duke physician uses near-death experience to encourage patient self-advocacy
Dr Neil Spector from Duke University required a heart transplant after his Lyme disease went undiagnosed for four years.
5. Nashua Mom in the ‘Lyme Light’ on Katie Couric Show
Fifth-grade teacher Kelly Downing was paralyzed from the neck down and interviewed by Katie Couric.
6. Infection by Borrelia burgdorferi and cutaneous B-cell lymphoma (Cancer)
Specific DNA sequences of Borrelia burgdorferi were identified in cutaneous lesions from 9 patients (follicle center lymphoma: 3/20; immunocytoma: 3/4; marginal zone B-cell lymphoma: 2/20; diffuse large B-cell lymphoma: 1/6).
7. Application of Nanotrap technology for high sensitivity measurement of urinary outer surface protein A carboxyl-terminus domain in early stage Lyme borreliosis.
41 of 100 patients under surveillance for persistent LB in an endemic area were positive for urinary OspA protein after antibiotic treatment.
8. Culture evidence of Lyme disease in antibiotic treated patients living in the Southeast.
Rudenko and colleagues reported culture confirmation of chronic Lyme disease in 24 patients in North Carolina, Florida, and Georgia. All had undergone previous antibiotic treatment.
9. DNA sequencing diagnosis of off-season spirochetemia with low bacterial density in Borrelia burgdorferi and Borrelia miyamotoi infections.
Faulty/misleading antibody tests landed a sixteen year old male in a psychiatric ward when his lab results did not meet the CDC’s strict criteria for positive results. His Western blot had only four of the required five IgG bands. Subsequent DNA sequencing identified a spirochetemia in this patient’s blood so his psychiatric issues were a result of neurologic Lyme disease misdiagnosed by antiquated/misleading serology. This patient was previously treated with antibiotics.
10. Granulomatous hepatitis associated with chronic Borrelia burgdorferi infection: a case report
The patient had active, systemic Borrelia burgdorferi infection and consequent Lyme hepatitis, despite antibiotic therapy.
11. Scotty Shelton and Persistent Infection in Saginaw MN
“Scotty’s brain (cerebral cortex) was positive for Borrelia burgdorferi and Borrelia myamotoi, his testicle is positive for Bb. We are now testing other tissues. Seven years of antibiotics and 3.5 years of natural treatments (along with antibiotics) and he was highly highly positive.”
12. Congenital Transmission of Lyme/TBD
13. Wheelchair-Bound Girl Calls Blessing By Pope Francis ‘Most Precious Moment Of My Life’ http://newyork.cbslocal.com/2015/09/24/pope-francis-blesses-girl-in-wheelchair/
NEW YORK (CBSNewYork) — A 12-year-old girl who has been confined to a wheelchair since being diagnosed with Lyme disease said meeting Pope Francis as he arrived in New York Thursday was “the most precious moment of my life.”