Opportunity to Help an Independent Researcher Publish His Work on Chronic Lyme Patients
https://www.gofundme.com/f/borrelia-research-microscopic-discovery Go Here to Donate
https://www.gofundme.com/f/borrelia-research-microscopic-discovery Go Here to Donate
https://www.lymedisease.org/mira-shapiro-dismantle-barriers/

Mira Shapiro gave the following public comment at the November 21 meeting of the federal Tick-Borne Disease Working Group.
Thank you for the opportunity to speak with you today. My name is Mira Shapiro. I am a chronic Lyme disease patient, biostatistician, and real world data specialist.
While attending ILADS as a patient several years ago, I was fortunate to learn about Lyme Disease.org and their MyLymeData patient registry. Since that time I have been working on projects using MyLymeData and have seen from our research results that I am not alone in my struggle with chronic Lyme disease.
Like many other patients, it took me more than 20 years to get an accurate diagnosis of my Lyme disease and co-infections. In that time, when I was misdiagnosed and dismissed by physicians, my symptoms escalated and interfered with my career progression, my family life, and overall quality of life.
As a scientist, I persisted and was eventually properly diagnosed. Had I not been able to do so, since my condition progressed to central nervous system involvement, I firmly believe I would be in a wheelchair or might not have survived.
I also had the resources for the cost for treatment that was not covered by insurance. I don’t consider myself well, but managed my condition as best I can. I wish I had been diagnosed at an earlier stage and avoided this lifelong debilitating chronic condition.
I consider myself lucky–not every Lyme patient has the knowledge or financial resources to fight this battle. You don’t have to look too far to read countless accounts of individuals who have been misdiagnosed with other conditions, and struggle to get an accurate diagnosis and the care they need for Lyme disease and other tick borne co-infections.
Although there are in excess of 400,000 new cases of Lyme disease annually, and most likely more, it is a disadvantaged disease from a research perspective. The last NIH treatment trials were conducted more than 25 years ago. Patients can’t wait for research to catch up.
The IDSA has essentially abandoned patients with chronic Lyme disease. Patients are disabled with chronic Lyme disease and many of them can’t work. It is unreasonable to interfere with patients’ ability to get treatment or leave them with no treatment options.
We need to recognize the fact that some patients are being treated by educated and dedicated Lyme Literate MDs. The NIH and CDC should not be putting up obstacles that interfere with patients getting the treatment and support they need to improve their health and quality of life. It’s about time we use all the scientific and medical resources available to put patients first and help them fight this battle.
Watch a video of Mira delivering her remarks in the top link.
________________
**Comment**
Unfortunately Lyme/MSIDS patients like Mira, who are even scientists, are unaware or refuse to take into account that the fact the NIH and CDC are corrupt organizations who have done nothing to help chronically infected patients in over 40 years. That’s a long time to do nothing. In fact, what they have done only further hurts these patients. A perfect recent example of this is the futility of attempting to work for six years at the federal level with the Tick-borne Disease Working Group (TBDWG). Hello?
The sooner we wake up and realize we are never going to receive help from these agencies, the better. We need to quit crawling in bed with the enemy, fund and do our own independent research. It’s the only forward progress we’ve ever made.
For more:
https://rawlsmd.com/webinars/ask-dr-rawls/
Wed. 12/7/22
8pm EST
QUESTION? Call 800-951-241
We know it’s been a challenging year for many people with Lyme, and we want to help our community wrap up 2022 on the best possible note. If you’re dealing with Lyme disease, coinfections, or another overlapping illness, you probably still have questions.
So what can we help you with? What’s been left unanswered?
Bring us those questions, and Dr. Bill Rawls will help you find as many answers as possible during our last LIVE Q&A webinar of the year, Ask Dr. Rawls: Lyme Disease 2022 Wrap-Up.
Dr. Rawls is the author of the bestselling book, Unlocking Lyme, and he knows firsthand what it’s like to struggle with chronic Lyme disease because his life was interrupted by it. In his journey to overcome it, Dr. Rawls explored countless treatments – from conventional medicine to a range of alternative therapies — until he finally discovered what worked.
Since his recovery more than a decade ago, Dr. Rawls has helped thousands of patients find their path to healing from Lyme disease and coinfections. Now, he’d like to help you.
So, bring your questions for this LIVE Q&A. PLUS: Don’t miss an exclusive gift for those who attend the live webinar.
NOV 30, 2022 —
Please see the following letter sent to all winners of the LymeX prize…
———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “contact@steveandalex.org” <contact@steveandalex.org>
Cc: The Tick-Borne Disease Working group and all winners of the LymeX prize
Date: 11/30/2022 1:12 PM
Subject: LymeX prize competition announces ten Phase 1 winners
November 7, 2022
LymeX prize competition announces ten Phase 1 winners
https://www.lymedisease.org/lymex-phase-one-winners/
“The ultimate goal of the multiphase competition is to nurture the development of diagnostics toward Food and Drug Administration review.”
To all winners of the Phase 1 LymeX Diagnostics Prize competition,
After spending the last thirteen years studying the mishandling of Lyme disease, I felt compelled to share the following facts (and supporting documentation) regarding prior attempts to introduce “new and/or improved” diagnostic detection methods. I concluded that a chronic relapsing seronegative disease does not fit the business model of vaccine development, patent royalties and pharmaceutical profits so laboratory confirmation of persistent infection after antibiotic treatment must be squelched/suppressed at all costs.
Examples
1. Culture: Advanced Laboratory Services
Barbara J.B. Johnson, microbiologist with the Centers for Disease Control and Prevention claimed laboratory contamination in reference to positive test results (Chronic Lyme) found in Advanced Laboratory Services’ Borrellia culture test. If this is the case, why didn’t the CDC work with Advanced Laboratory Services to perfect its culture test and resolve the so-called “contamination” issues?
New Lyme Culture Test Failed CDC Analysis Aug 20, 2013
http://www.medscape.com/viewarticle/809626
New CDC/FDA Warning Against Unapproved Lyme Culture Test
https://www.medscape.com/viewarticle/823840
“Dr. Nelson emphasized that for Lyme disease diagnosis, the CDC recommends a 2-step process of serologic testing: first, an FDA-cleared enzyme immunoassay, followed in immunoassay-positive or equivocal cases by confirmatory Western blot. Only patients positive on both tests are considered to have Lyme disease.”
Carl Tuttle’s comment: Current FDA approved Lyme disease tests (Antibody tests) cannot be used to gauge treatment failure or success which makes them ideal for concealing an antibiotic resistant/tolerant superbug allowing the thirty-year-old dogma to remain intact.
2. PCR testing:
We have seen similar actions from the CDC with PCR testing as well. In May of 2012 the CDC announced the Development of a Novel Genus-specific Real-time PCR Assay for Detection and Differentiation of Bartonella Species and Genotypes: http://www.ncbi.nlm.nih.gov/pubmed/22378904
Here the CDC is using PCR for a definitive diagnosis of Bartonella however, according to the CDC and the ALDF group on June 11, 2012 PCR cannot be used for Lyme diagnosis per the CDC expert commentary posted on Medscape below:
PCR for Diagnosis of Lyme Disease: Is It Useful? Christina A. Nelson, MD, MPH
https://www.medscape.com/viewarticle/764501
Quotes from Christa Nelson: (Medical Officer in the Bacterial Diseases Branch of CDC’s Division of Vector-Borne Disease)
“Is PCR useful for the diagnosis of Lyme disease? In general, the answer is no.”
“Two-tiered serology remains the mainstay of laboratory testing for Lyme disease.”
Carl Tuttle’s comment: PCR is acceptable for Bartonella but not Lyme disease. Double standard here?
3. Nested PCR and DNA sequencing: Milford Molecular Diagnostics
In September of 2012 the CDC entered into an agreement with Dr. Sin Lee to evaluate the viability of his DNA sequencing technology. Martin E. Schriefer, Ph.D., the chief of the CDC’s diagnostic and reference laboratory, stated the following: (from the attached court document) https://www.dropbox.com/s/8irsb6oqunwy3zq/Notice%20of%20Appeal.pdf?dl=0
“So wherever possible we encouraged and required other non-serologic-based tests in addition to clinical presentation so that might have included PCR or culture or both. . . . And again I’m looking forward to seeing a greater utilization of PCR as a diagnostic tool in the future.” -Martin E. Schriefer, Ph.D.
When Dr. Lee published a case of persistent infection (Chronic Lyme disease) in 2014 all communication with the CDC ended abruptly with no explanation.
DNA Sequencing Diagnosis of Off-Season Spirochetemia with Low Bacterial Density in Borrelia burgdorferi and Borrelia miyamotoi Infections http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4139787/
Carl Tuttle’s Comment: It should be noted that the chronic Lyme disease case identified in this publication was found in blind-coded serum samples sent to Dr. Lee’s laboratory from the CDC’s Lyme disease serum repository and other species of Borrelia were found within these samples using DNA sequencing; the CDC had no idea that multiple pathogens were involved.
Has the CDC purposely discredited other innovative technologies which are in competition to the invention being patented by Theresa M. Russell and Barbara J.B. Johnson of the NCEZID under Pub. No. WO 2013110026 A1 entitled “Compositions and methods relating to Lyme disease”?
Dr. Lee although participated in the competition, was not awarded the LymeX prize. Does anyone believe that this decision was just a coincidence?
4. NIST
New Experimental Test Detects Signs of Lyme Disease Near Time of Infection February 11, 2016
https://www.nist.gov/news-events/news/2016/02/new-experimental-test-detects-signs-lyme-disease-near-time-infection
“The current standard blood test for Lyme disease exposes the infection only after antibodies have accumulated to detectable levels, which can take up to 4 to 6 weeks. If patients exhibit a telltale bull’s-eye rash, diagnosis and treatment can begin earlier. But the rash does not occur in 20 to 30 percent of Lyme disease patients, according to the Centers for Disease Control and Prevention.
Rather than waiting for an infected person’s immune system to produce noticeable amounts of antibodies, the team chose to home in on the bacteria itself—specifically, proteins the bug sheds when attacked by the body’s defenses.
“From many candidates, we chose one that is both easily distinguished from human serum proteins and an unambiguous indicator of the bacteria,” Turko says. “This protein, which resides on the outer surface of membranes, became the target of our search in serum samples.”
Carl Tuttle’s comment: Response from Dr Illarion Turko; “This project did not receive further development and is on-hold for now.”
So, who at the CDC got to Dr. Turko and discouraged further development?
Other examples of interference/intimidation
In 2008 Nordin Zeidner published his study regarding single dose Doxycycline for tick bite. Pamela Weintraub interviewed Zeidner for her book:
Cure Unknown (Revised Edition): Inside the Lyme Epidemic
By Pamela Weintraub
https://books.google.com/books?id=
Excerpt:
“Immunologist Nordin Zeidner, chief of the CDC’s Vector-Host laboratory in Fort Collins, Colorado, told me internal agency studies had found the strategy questionable, and definitely ineffective in mice.”
“With the support of his CDC colleagues, Zeidner had begun to work with industry to develop an alternative: a form of injectable Doxy that could be sustained in the body for nineteen days.”
“Trying his formulation on mice, Zeidner found that 100 percent were protected from Lyme as well as the coinfection, anaplasmosis.”
“…..single dose doxy stopped Lyme disease not in 87% of mice, but rather, in 20 to 30 percent at most.”
_____________________________
Dr Gary Wormser of New York Medical College (who has controlled the Lyme disease narrative for the past three decades) published a study earlier promoting the use of single dose Doxy for tick bite. (See Wormser’s 2001 flawed NEJM article)
I understand that it was Wormser who called Zeidner’s superiors at the CDC to put an end to Zeidner’s work. Zeidner was told to discard the mice sera instead of testing for antibodies as he had promised.
Zeidner’s research was terminated for “lack of industrial support” Mead, and he was promoted, and his email address inactivated. The CDC stopped his research and sent him to Europe
I have attached Zeidner’s 2008 study for your review:
A sustained-release formulation of doxycycline hyclate (Atridox) prevents simultaneous infection of Anaplasma phagocytophilum and Borrelia burgdorferi transmitted by tick bite
https://www.dropbox.com/s/jc0h9g9arjhc8l1/Zeidner%202008.pdf?dl=0
Questions for LymeX prize competition winners:
Are all of you confident that the current pandemic was handled properly by our Public Health Officials? Was diagnostic testing controlled/manipulated in any way? Have lifesaving therapies been suppressed over pharmaceutical profits (vaccines)?
I ask the competition winners to be suspect of HHS oversight for this LymeX prize competition and if any dishonest/suspicious activity is experienced as described previously in this letter, please seek early legal counsel, (perhaps collectively) and involve your state senators to expose the ongoing corruption hell bent at maintaining the false thirty-year Lyme disease narrative: “Lyme is Hard to Catch and Easily Treated” (with a 2-4wk antibiotic treatment mandated by the Infectious Diseases Society of America)
Respectfully submitted,
Carl Tuttle
Hudson, NH
Cc: All LymeX prize competition winners, All members of the 2022 Tick-Borne Disease Working Group, the Steven & Alexandra Cohen Foundation
More examples of interference/manipulation as reported through the experience of a clinician on the front lines:
2018 ILADS Webinar – History of Lyme Disease by Joseph J. Burrascano, Jr. MD. (Video Recording)
https://vimeo.com/306846706 Summary:
Joseph Burrascano, MD’s cogent history of Lyme: East Hampton, Long Island NY had the highest rate of Lyme in the world. 1965 internist Sidney Robin coined the term “Montauk Knee”.
1985 87 seronegative patients all had spirochetes produced using Alan McDonald’s culture technique. “Seronegativity is real”
@7:00 re: PTLDS – “There’s never, ever, ever been a description of this Post Lyme Syndrome from an immunological point of view that clarifies what it is and applies to every single patient”.
@9.05 Stony Brook study of 21 day doxycycline “… had a 100% FAILURE RATE… THEY KICKED ME OUT OF THE STUDY AFTER THAT; AND THEY NEVER REPORTED THOSE RESULTS.”
@9.35 Patient Evaluation: “I took advantage of Dr. McDonald’s culture… after treatment ended, if you waited a few weeks, they [patients] were all culture positive. It was failed treatment and a persistence of the infection.”
@12.45 Late 1980’s “Rocephin came onto the scene… 100% failure rate of 2 weeks of Rocephin, even at high dose… Duration of treatment is really, really what’s important.” Findings presented @ 1990 Stockholm International Conference.
@13.50 633 patient records reviewed indicated at least 4 months treatment for those “with multiple bites, Lyme arthritis, heart murmurs, hormonally active women, those sick for more than 1 year, age over 60, acute carditis, documented immune deficiency, failed oral treatment.”
@26.50 Discovered on lecture circuit Dr. Ed Masters from MO, John Druhl, NJ & Paul Levy, San Francisco all independently concluded higher doses and longer treatment necessary. They’d never met or communicated previously.
1990 NIH Gold Stain – 73 chronic patients, 13.5 months mean treatments. Discovered blebs and biofilms.
@31.19 “So, whatever happened to this great gold stain? Know what? Nothing. NIH stopped the funding… closed the whole thing down and never again did they ask front line Lyme doctors to contribute specimens to their studies. So, there’s some politics one more time.”
@32.58 Co infections seem to affect only chronic Lyme patients.
@34.19 Lyme is the thing that takes over the immune system, weakens our defenses….
@36.52 Lyme is an immune suppressive illness….
@38.25 McDonald presented cultures at “… a meeting of NYS Medical Society… detractors were people from Yale and Stony Brook who didn’t want their patented serologic tests to be usurped, and they started claiming that McDonald was falsifying his data and so forth.”