It’s crucial to acknowledge and treat congenital Lyme disease
By Kristina Bauer
Growing up in Illinois, I loved athletics and spending time outdoors exploring, hiking, camping, and boating. But I didn’t understand how important it was to prevent tick bites. My mom would check my head when I came in from playing in the woods, sometimes pulling off multiple ticks at a time.
I spent the next 30 years going from a very sick state, back to being athletic, and then going back to sick, not realizing what had resulted from those childhood tick bites.
Many doctors told me I was the healthiest sick person they knew, and I should increase my dose of treatment for Crohn’s disease even though I did not have typical Crohn’s symptoms. Truth is, they weren’t pulling the right labs.
I had flu-like symptoms, extremely painful fibromyalgia, migrating joint pain, frequent infections, and intestinal ulcers that would not resolve with prednisone and mesalamine drugs. Sixteen doctors missed my hallmark symptoms of Lyme disease because they hadn’t been trained in medical school about the symptoms and how to diagnose it properly.
I knew I was sick but got a pass from so many experts that I hoped I could lead a normal life. After college, when I married and had children, the health problems continued. By then, I was living in Texas.
Lyme disease and co-infections
In time, I visited the best-known Lyme specialist in the state and found I tested CDC-positive for Lyme and several co-infections. My LLMD made sure I tested my kids as well, although we knew that Lyme testing is not always definitive. Although none of my kids had ever had a known tick bite, they all had compromised immune systems—getting sick often and taking a long time to get well.
My sickest child also experienced periodic “absence seizures”— brief, sudden lapses of consciousness—yet had no bands on the Western blot Lyme test at all. Another child was positive through IGeneX Labs. The other two had only a few positive bands—but given a thorough history and taking into account the mother’s health, were given a clinical diagnosis of Lyme.
We treated all five of us over the course of 10 years, an expensive and gut-wrenching process.After about seven years, the kids and I were all feeling better. Over time, my kids resumed school, work, and enjoying their lives.
The heartache of watching our friends being active while we were stuck in bed, feelings of abandonment by the medical care system, and a lack of resources for the Lyme community is what fueled me to start advocating for congenital families.
The need for education
I thought, “how could this happen in America, and who is speaking for us?” I vowed to do what I could to change that by advocating, educating, and legislating for pediatric and congenital Lyme patients, and opening access to care for treatments. In time, I started the Texas Lyme Alliance and started speaking on behalf of congenital families because there was not a lot of discussion on the topic. I conduct interviews with leading clinicians and researchers for treatments and diagnostics to educate families and physicians alike.
I graduated from the Institute of Integrative Nutrition Health Coaching, and now connect people to resources for complex Lyme treatment all over the world. While I do not provide medical advice, I love unraveling the mystery of treating Lyme disease, and enjoy passing on my knowledge I’ve learned and my experience from treating with some of the best doctors from Texas to Germany.
This interview with Dr. Ronald Wilson can be passed along to your family, friends, and physician to help them understand how to test for Lyme, and how crucial it is to treat all the forms Lyme goes into to evade treatment and the immune system.
Dr. Wilson serves on the Medical Board of Texas Lyme Alliance.
Congenital Lyme, a Dr.’s perspective. Dr. Wilson is a board certified OBGYN of 31 years, delivered 6,000 babies, became a Lyme patient then turned Lyme doctor. He had treated 5,000 Lyme patients over 15 years. Dr. Wilson is a Harvard graduate and the President of Education for ILADEF, the international authority in guidelines (ILADS) for treating tick born illness. Thank you Dr. Wilson and all the Lyme docs around the world for helping us get our lives back! Interviewed by Kristina Bauer, founder Texas Lyme Alliance and Communications Expert GOTCHA.
You can see more of Kristina’s interviews on the website of the Texas Lyme Alliance.
GlaxoSmithKline (GSK) will pay 23andMe $20 million to extend its five-year contract to mine the company’s consumer DNA data for another year
The drugmaker is searching for hints about genes that might be at the root of disease. 23andMe will get royalties on any drugs developed
23andMe also recently launched a new DNA-sequencing service called Total Health, which sequences your entire exome, the protein-coding part of your genome, which is thought to be responsible for most disease-causing genes. The move is another step in 23andMe’s plan to transform itself into a full-fledged health care company that also treats patients
23andMe acquired a telehealth and drug-delivery startup called Lemonaid Health in 2021. Lemonaid doctors are being trained by 23andMe on how to interpret DNA results and provide tailored health advice
23andMe’s concept of “health care” is all about expanding the use of drugs by getting people on them earlier, before they even have symptoms, based solely on genetic risk factors
Do you know who has access to your genetic data? If you’ve used a DNA testing company like 23andMe, chances are your genetic data is in the hands of insurance companies and drug companies. It may also be in the hands of hackers. Either way, your DNA could be used against you.
GlaxoSmithKline Extends Data Mining Contract With 23andMe
As reported by Bloomberg,1 GlaxoSmithKline (GSK) will pay 23andMe $20 million to extend its five-year contract to mine the company’s consumer DNA data for another year:
“The idea for drugmakers is to comb the data for hints about genetic pathways that might be at the root of disease, which could significantly speed up the long, slow process of drug development.
GSK and 23andMe have already taken one potential medication to clinical trials: a cancer drug that works to block CD96, a protein that helps modulate the body’s immune responses.
It entered that testing phase in four years, compared to an industry average of about seven years. Overall, the partnership between GSK and 23andMe has produced more than 50 new drug targets …
The new agreement changes some components of the collaboration. Any discoveries GSK makes with the 23andMe data will now be solely owned by the British pharmaceutical giant, while the genetic-testing company will be eligible for royalties on some projects. In the past, the two companies pursued new drug targets jointly.”
In case this wasn’t obvious, YOU pay to have your DNA tested, and then 23andMe sells the mining rights of those data, and makes royalties on new drugs. Quite the profit model, having customers pay for their own exploitation. And GSK isn’t the only drug company mining your data. The deal is nonexclusive, so any number of other companies may be mining your genetic data as well.
23andMe Seeks to Transform Into a Health Care Company
23andMe also recently launched a new DNA-sequencing service called Total Health, which sequences your entire exome, the protein-coding part of your genome, which is thought to be responsible for most disease-causing genes. While their basic DNA test for health and ancestry has a price tag of $229,2 this expanded test will set you back $1,188 — per year.3
The move is another step in 23andMe’s plan to transform itself into a full-fledged health care company that also treats patients. With this goal in mind, 23andMe acquired a telehealth and drug-delivery startup called Lemonaid Health in 2021.4 Lemonaid doctors are reportedly being trained by 23andMe on how to interpret DNA results and provide tailored health advice. According to Bloomberg:5
“Total Health is designed to pinpoint genes 23andMe views as ‘actionable’ — those that some combination of lifestyle changes and medication can affect.
The list includes the more than 80 genes the American College of Medical Genetics consider actionable, including those for cancer, cardiovascular disease, metabolic disease and neurological disorders …
Someone who finds out they’re at risk for early heart disease would want to closely monitor their cholesterol levels and consider going on cholesterol-lowering drugs as soon as those levels become unsafe, said [vice president for genomic health at 23andMe, Noura] Abul-Husn, giving an example of how the information can be used …
The Total Health package’s biannual blood tests give customers a look at more than 50 biomarkers, helping them track progress in managing risks identified by sequencing. Clinicians will provide patients with personalized risk assessments and preventive health plans, along with an annual virtual visit and ongoing messaging …”
Genetic Predisposition — A Tactic to Increase Drug Sales
This is an excellent example of why Americans are so mired in chronic illness, and why genetic testing, as it currently stands, will do nothing to ameliorate the situation.
If you have genetic risk factors for early heart disease, the last thing you want to do is go on cholesterol-lowering drugs as they destroy heart tissue and act as mitochondrial toxins,6,7Statins also raise your risk of diabetes and dementia.
Unfortunately, if you do an online search for “statins damage heart” or something similar, the first page or two of results will be articles “debunking” claims that they can harm your heart. This is Big Tech censorship at work, and it’s only going to get worse from here. You have to dig deeper into the search results to actually find what you’re looking for. Eventually, you may not find it at all.
The point here is that cholesterol has little to do with the development of heart disease, so the entire premise of this kind of “prevention” is flawed from the get-go. Basically, 23andMe’s concept of “health care” is all about expanding the use of drugs by getting people on them earlier, before they even have symptoms, based solely on genetic risk factors.
Your Genetic Data Can Be Used Against You in Many Ways
Adding insult to injury, your genetic data may be sold to insurance companies that may then charge you extra for a “preexisting condition” you don’t actually have but might potentially develop in the future. Life insurance companies may also charge you more, or decline coverage altogether. As reported in a September 7, 2023, article in The Conversation:8
“In Australia, life insurance companies can legally use the results of genetic tests to discriminate. They can decline to provide life insurance coverage, increase the cost of premiums, or place exclusions on an individual’s cover …
This week, a number of federal parliamentarians argued for a ban on genetic discrimination by life insurance companies … The Disability Discrimination Act 1992 prohibits discrimination on a number of different bases, including genetic risk factors.
However, there is a specific carve-out in the Act that allows life insurers to discriminate in ways other entities are prohibited from doing. This means companies providing insurance for death, income protection, and disability can discriminate on the basis of genetic risk of disease.
Other companies that provide risk-rated insurance (where insurers assess an individual’s risk factors and change coverage or premiums based on this risk) can also use genetic test results to discriminate. This includes travel insurance.”
23andMe, the Google of Gene-Based Medicine
As noted in a November 2013 article by Scientific American,9 23andMe poses a unique threat to the public that few ever discuss. While sold as a medical device, its true function is that of a massive information-gathering operation, just like Google turned out to be.
While it took a while, it’s now become crystal clear that Google is using all that personal data gathered from users to control and suppress information that doesn’t benefit its advertisers. Will 23andMe end up being a repeat of Google’s bait and switch? As reported by Scientific American:10
“Although 23andMe admits that it will share aggregate information about users genomes to third parties, it adamantly insists that it will not sell your personal genetic information without your explicit consent. We’ve heard that one before …
Even though 23andMe currently asks permission to use your genetic information for scientific research, the company has explicitly stated that its database-sifting scientific work ‘does not constitute research on human subjects,’ meaning that it is not subject to the rules and regulations that are supposed to protect experimental subjects’ privacy and welfare.
Those of us who have not volunteered to be a part of the grand experiment have even less protection. Even if 23andMe keeps your genome confidential against hackers, corporate takeovers, and the temptations of filthy lucre forever and ever, there is plenty of evidence that there is no such thing as an ‘anonymous’ genome anymore.
It is possible to use the internet to identify the owner of a snippet of genetic information and it is getting easier day by day. While the FDA concentrates on the question of whether 23andMe’s kit is a safe and effective medical device, it is failing to address the real issue: what 23andMe should be allowed to do with the data it collects.
For 23andMe’s Personal Genome Service is much more than a medical device; it is a one-way portal into a world where corporations have access to the innermost contents of your cells and where insurers and pharmaceutical firms and marketers might know more about your body than you know yourself.
And as 23andMe warns on its website, ‘Genetic Information that you share with others could be used against your interests. You should be careful about sharing your Genetic Information with others.’ Present company excepted, of course.”
For the record, that warning no longer exists on 23andMe’s website. In the end, we may well see DNA testing companies like 23andMe share everyone’s genetic data with insurance companies, which in turn may force you into pharmaceutical solutions for problems you don’t yet have.
The CIA Connection
Interestingly, the connection between Google and 23andMe is closer than you might think. 23andMe cofounder Anne Wojcicki was married to Google founder Sergey Brin for eight years and the couple have two children together. They divorced in 2015.
Wojcicki’s sister, Susan Wojcicki, was one of Google’s first employees. In 2006, she convinced Google to acquire YouTube and served as YouTube’s CEO from 2014 until 2023. She’s now an adviser to Google and its parent company Alphabet.11,12
As reported by Quartz magazine, Google came about largely thanks to research grants for mass surveillance technologies from the CIA and NSA.13
Similarly, Wojcicki was finally able to take 23andMe public after raising more than $1 billion in funding from, among others, Google, GlaxoSmithKline, Johnson & Johnson and Sequoia Capital,14,15 the latter of which is also heavily invested in artificial intelligence and has drawn scrutiny from Washington for having “significant operations” in China that might benefit the Chinese military.16
Google — probably the biggest spy machine ever built — the CIA, NSA, Big Pharma and a Chinese-linked AI investment firm. These are all either directly invested in, or linked to through investments, a company (23andMe) that is harvesting the genetic code from millions of Americans. Does that really sound like a good idea?
You don’t need predictive AI to figure out that the beneficiaries of 23andMe’s data will be the drug industry and the intelligence agencies that are working to further the transhumanist and technocratic goals and ambitions of the globalist deep state.
Data Breaches Are Inevitable, and Have Already Occurred
Data breaches and hacks are becoming ever more prevalent, and 23andMe is not immune to that threat. In fact, in late October 2023, the company notified customers that a breach into its “DNA relatives” databank had occurred. As reported by Reuters:17
“Genetics testing company 23andMe … sent emails to several customers to inform them of a breach into the ‘DNA Relatives’ feature that allowed them to compare ancestry information with users worldwide …
Since news of the hack, many customers have expressed worries their ethnicity and other sensitive information could be used against them if leaked.”
While that might sound paranoid, Thor Benson, in a June 2020 IEEE Spectrum article18 argued that “DNA databases in the U.S. and China are tools of racial oppression,” and that “What is initially presented as a public good can easily be used for evil ends.”
Your DNA Could Be Used to Pin a Crime on You
Benson’s article focuses not on the use of DNA in medicine but rather its use in law enforcement. DNA samples are routinely collected when you’re arrested, and that DNA database is then used during other crime investigations.
But DNA samples are also collected from victims of crime, and in late 2021, a California rape victim was charged with an unrelated crime based solely on the DNA from her rape kit sample, taken five years earlier. Public outcry ensued, and once the district attorney learned of the source of the DNA, the charges against her were dropped. As reported by Mission Local:19
“Under the Fourth Amendment, law enforcement must obtain a warrant or written permission from a court to lawfully seize evidence. And, in this case, ‘It’s very clear that they’re not consenting to their DNA being collected to use five, 10, 15 years later on in a law enforcement investigation,’ [district attorney Chesa] Boudin said.”
California lawmakers have also approved a bill to prohibit the use of DNA collected from victims for any other purpose than to identify the perpetrator of the crime against them.20
Now, if DNA samples from victims can later be used to tie them to another crime, how do you think DNA samples voluntarily handed over to a DNA testing company may be used? Anyone can essentially be framed for any crime.
DNA Can Be Used Against Dissidents of All Stripes
Going back to Benson’s article:21
“A report that was published by the Australian Strategic Policy Institute in mid-June claims that China is operating the ‘world’s largest police-run DNA database’ as part of its powerful surveillance state.
Chinese authorities have collected DNA samples from possibly as many as 70 million men since 2017, and the total database is believed to contain as many as 140 million profiles. The country hopes to collect DNA from all of its male citizens, as it argues men are most likely to commit crimes.
DNA is reportedly often collected during what are represented as free physicals, and it’s also being collected from children at schools. There are reports of Chinese citizens being threatened with punishment by government officials if they refuse to give a DNA sample.
Much of the DNA that’s been collected has been from Uighur Muslims that have been oppressed by the Chinese government and infamously forced into concentration camps in the Xinjiang province …
James Leibold, a nonresident senior fellow at the Australian Strategic Policy Institute and one of the authors of the report on China’s DNA database, tells Spectrum that he is worried that China building up and utilizing this database could normalize this type of behavior.
‘Global norms around genomic data are currently in a state of flux. China is the only country in the world conducting mass harvesting of DNA data outside a major criminal investigation,’ Leibold says. ‘It’s the only forensic DNA database in the world to contain troves of samples from innocent civilians.’
Leibold says ethnic minorities like the Uighurs aren’t the only ones threatened by this mass DNA collection. He says the database could be used against dissidents and any other people who the government sees as a threat …
‘We know the Chinese police have planted evidence in the past, and now it is conceivable that they could use planted DNA to convict ‘enemies of the state.'”
In this post-COVID era, you can replace “China” with most Western countries, and “Uighur Muslims” with “anti-vaxxers,” whom intelligence agencies have declared “a national security threat.”
WHAT MIGHT SUDDEN CARDIAC DEATH DUE TO LYME DISEASE LOOK LIKE?
“Although rare, sudden cardiac death caused by Lyme disease might be an under-recognized entity,” according to researchers who describe their findings from an autopsy study on 5 case patients who died from sudden cardiac death and were found post mortem to have Lyme carditis. The cases are discussed in an article entitled Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis, published in The American Journal of Pathology.
Fatal Lyme carditis is rarely identified. In reviewing five post mortem cases, Muehlenbach and colleagues found that Lyme disease was not suspected for one patient who complained of episodic shortness of breath, while the second patient tested negative for Lyme disease. Two other patients did not seek medical care. Details regarding the fifth patient were not released.
Ultimately, two case patients were diagnosed during unexplained-death investigations at the Centers for Disease Control and Prevention (CDC). Lyme disease was suspected in two of the other cases by cardiac pathology at a tissue bank transplant service. Muehlenbachs and colleagues reassure the readers that cardiac tissue was not transplanted. [1]
Autopsies reveal several findings
Spirochetes were present in the heart on all 5 cases. When using immunohistochemistry (IHC), spirochetes were found “within the myocardial interstitial infiltrates, in the subendocardium, and occasionally in pericardial tissue in association with lymphohistiocytic infiltrates.” Muehlenbachs adds, “Rare spirochetes were seen in the leptomeninges of two cases by immunohistochemistry.”
All 5 cases lived in Lyme-endemic areas. Patients resided in counties with a high or moderate incidence of Lyme disease including, New York, New Hampshire (with recent travel to Connecticut), Massachusetts and Indiana.
All 5 cases reportedly engaged in outdoor activities. “Two patients had known exposure to ticks, and one patient reported a recent bite.”
None of the 5 cases met the CDC surveillance case definition for Lyme carditis.This definition includes: recurrent, brief attacks (weeks or months) of objective joint swelling in one or several joints; lymphocytic meningitis; cranial neuritis; radiculoneuropathy; encephalomyelitis; acute onset of high-grade (2nd-degree or 3rd-degree) atrioventricular conduction defects, and myocarditis.
Only 1 of the 5 cases underwent serologic screening for Lyme disease and the results were negative.
All 5 cases were symptomatic prior to their death. “A prodrome was reported for each of the patients that included the following: non-specific viral-like illness, malaise, shortness of breath, and anxiety,” according to Muehlenbachs. “One of these patients also had joint and muscle pain, and the other two patients had joint pain for an unknown duration.”
“No dermatologic lesion was documented or reported for any of the patients, although one patient was evaluated in an emergency department 1 month before death for an arm lesion diagnosed as a possible spider bite from which methicillin-resistant Staphylococcus aureus was isolated in culture.”
“Providers should consider Lyme disease in patients who have cardiac symptoms and exposure in an endemic area.” [1]
All 5 cases were seropositive post mortem according to the CDC’s two-tier criteria. “One sample met both IgM and IgG Western Blot (WB) criteria, with two of the three IgM bands and 6 of the 10 IgG bands reactive. The four remaining samples were positive by IgM WB criteria only, although three were nearly IgG positive with 4 of the 10 bands reactive,” states Muehlenbachs.
Underlying cardiac disease may have played a role in 3 of the 5 cases of sudden cardiac deaths associated with Lyme disease, Muehlenbachs points out, since there was significant underlying heart disease present in two patients, and an additional patient had moderate atherosclerosis, discovered at autopsy.
Physiological cardiac stress was considered a potential factor in 2 of the 5 cases. “In the other two patients, who were otherwise healthy, a degree of physiological cardiac stress likely was present: the woman had given birth 6 months previously and the man was a physically active outdoor enthusiast,” according to Muehlenbachs.
These pathologic findings provide insight into the possible cause behind sudden cardiac deaths associated with Lyme disease. “The findings support the proposed disease mechanism of spirochete cardiac tropism during early disease dissemination, the infiltration of cardiac tissue by inflammatory cells, and involvement of the conduction system, which likely mediates sudden cardiac death.” [1]
Is early diagnosis and prompt treatment possible?
“Early diagnosis and prompt treatment for Lyme carditis can be life-saving,” according to Muehlenbachs. “Health care professionals should evaluate all patients with suspected Lyme disease for cardiac signs and symptoms, and obtain an electrocardiogram promptly if carditis is suspected.” Furthermore, “diagnosis is based on clinical suspicion and serologic testing, with the caveat that serology testing may be falsely negative in a patient with recent illness onset.” [1]
Fishe and colleagues describe how early diagnosis and treatment helped save the life of a 15-year-old African-American girl with Lyme carditis. [2] The patient was hospitalized after a 3-day history of intermittent retrosternal and epigastric pain. After treatment was initiated, she developed a heart block. Tests for Lyme disease were positive and she was diagnosed with Lyme disease-associated myocarditis.
The adolescent was empirically started on doxycycline and was concurrently treated with milrinone infusion for afterload reduction and intravenous furosemide for pulmonary edema. Her EKG changed to first-degree heart block by day 2 and resolved completely on hospital day 3.
She recovered and was discharged home on hospital day 7 on oral furosemide, enalapril, and doxycycline, according to Fishe and colleagues.
However, another adolescent was not so fortunate. He died suddenly from undiagnosed Lyme carditis, following complaints of flu-like symptoms. The case is discussed in another All Things Lyme blog, Relying on a Negative Lyme Disease Test Can Prove Deadly.
“In patients with Lyme disease who complain of cardiopulmonary symptoms, clinicians should have a low threshold for obtaining an EKG to evaluate for Lyme carditis,” Fishe points out. Furthermore, clinicians should take note that in “children and adolescents, respiratory and gastrointestinal complaints, with or without chest pain, are the most frequent presenting symptoms.”
References:
Muehlenbachs A, Bollweg BC, Schulz TJ et al. Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis. Am J Pathol, (2016).
Fishe JN, Marchese RF, Callahan JM. Lyme Myocarditis Presenting as Chest Pain in an Adolescent Girl. Pediatr Emerg Care, (2016).
Sadly, getting a Lyme test is not always helpful. Since testing is so abysmal, it misses a vast majority of cases – which can be worse in the long run because when the test comes back negative doctors tell patients they don’t have Lyme, when they very well could be infected with numerous life-altering infections. Getting to an experienced Lyme literate doctor is your best bet as they use more sensitive tests AND they diagnose clinically based on symptoms, not a test with arbitrary antibody levels.
Jacksonville Lyme disease patients say they had to ask a dozen times for a test
Researchers at the University of North Florida say official Lyme disease statistics underestimate the number of people with Lyme disease.
JACKSONVILLE, Fla. — Schools may be out for summer break, but we are now in tick season. As your family spends more time in the fresh air, it’s important to know how to avoid the disease-carrying arachnids.
At the University of North Florida, researchers are working to create a more sensitive test for Lyme disease, a disease that is transmitted through ticks. Needing a more sensitive test and getting doctors to give a Lyme disease test in the first place, are just some of the problems people with Lyme disease say they face.
“It was March 3, 2011,” said Melissa Bell. “He came home from school, I know the exact day because it was a traumatic day, saying, ‘I don’t know what’s wrong, I’m falling down at P.E.’ And then an A+ student started having problems with short term memory, C’s, D’s, F’s, started losing the ability to walk.”
Bell’s son was 11 years old when he started showing symptoms of Lyme disease, but no one knew what it was. Bell, who is now the president of the Florida Lyme Disease Association, says it took nearly a year of advocating for her son to get a diagnosis.
“We probably asked for Lyme testing a dozen times,” Bell said. “It shouldn’t be that hard to have children tested for Lyme disease.” (See link for article)
_______________
**Comment**
Sadly, this is the norm in Lymeland.
Important quote:
“If you get a negative Lyme test, it doesn’t prove that you don’t have the infection,” Clark said.
They have restricted doctor and patient choice, care, and access in a number of ways, but one way they cling to like a survivor on a raft is testing. Lyme testing has been fraudulent from the get-go and their suppression of other tests is something that should be made into a movie. In so many ways the CDC and FDA are maniacal evil twins – both doing all within their power to monopolize medicine.
Dr. Sin Hang Lee has sued the CDC for suppressing direct detection tests for Lyme disease, and promoting their own newly patented, unproven metabolomics technology for diagnosis of LD. Current and former CDC representatives receive royalties as a result of working on the approval and promotion/CDC endorsement of a Lyme disease serology test.
Instead of fixing the obvious errors (no positive control sample, no data on false positives, faulty cycle thresholds, and refusal to publish Ct values due to it being “proprietary”,) HHS, FDA, and CDC opted for arbitrary and perpetual diagnosis of COVID.
It’s important the CDC and FDA control testing because then they can completely steer the narrative about any disease – even if the numbers are all based on faulty testing. They’ve been doing this in Lymeland for over 40 years by
“setting arbitrary level of antibodies to diagnose a disease that has not been amenable to Koch’s postulates seems open to question. By the same token, ignoring antibody results unless they meet arbitrary levels seems suspect. The vast majority of patients in this series showed some WB antibody exposure, but many did not meet the arbitrary limits set….in our present state of knowledge, the diagnosis of chronic Lyme disease is a clinical one. Many of the patients in this series have suffered serious ‘hurts’ when they have been told that they could not have LD because their WB did not meet arbitrary limits.” ~ Dr. Burton Waisbren IDSA founder who disagreed with his colleagues. RIP
Medscape: New Federal Oversight of Lab Developed Tests
Carl Tuttle
Hudson, NH, United States
NOV 1, 2023 —
Please see the following inquiry sent to Dr. Paul Auwaerter regarding his commentary (verbal diarrhea) published on Medscape. He has yet to respond to my serious question. Why not email Dr. Auwaerter and demand a response?
“I often see patients who are concerned they might have Lyme disease, or they’ve been told by other physicians that they have a tickborne or multiple infections. I’ve had patients who claim to have five or six infections: Lyme disease, Babesia, Bartonella, Mycoplasma, or Epstein-Barr virus. They bring LDT results from outside laboratories, which often have a proviso that these tests are only for research or educational purposes. Yet, they purport finding analytes (antibodies or proteins) that suggest the patient has an active infection. These patients may have been treated but are not improving, so they are referred to me.”
Oct 25, 2023
The IDSA Foundation
1300 Wilson Boulevard Suite 300
Arlington, VA 22209
Attn: Paul Auwaerter, vice chair of the IDSA Foundation
Dear Dr. Auwaerter,
As a member of New Hampshire Governor Chris Sununu’s 2020-2021 commission to study diagnostic testing for Lyme disease, I read your commentary with great interest. After a full year of deliberation, study results concluded that the FDA approved two-tier serologic immunoassay for Lyme was not reliable in all stages of disease. (No better than a coin toss)
“A commission to study the role of clinical diagnosis and the limitations of serological diagnostic tests in determining the presence or absence of Lyme and other tick-borne diseases”
With that conclusion, serology cannot be used to determine who has or does not have Lyme disease.
“FDA approval” (Federal Oversight) has failed miserably in this example.
The CDC has warned the medical community that “surveillance case definitions” (which include the IgM and IgG Western blot serologic bands) are not to be used for making a clinical diagnosis:
NOTE: A surveillance case definition is a set of uniform criteria used to define a disease for public health surveillance. Surveillance case definitions enable public health officials to classify and count cases consistently across reporting jurisdictions. Surveillance case definitions are not intended to be used by healthcare providers for making a clinical diagnosis or determining how to meet an individual patient’s health needs.
________________________
In our prospective cohort of 192 children with a physician-diagnosed erythema migrans (EM) lesion, two-tier Lyme disease serology had higher sensitivity in children with multiple EM lesions (76.8% multiple lesions vs. 38.1% single EM; difference 38.7%, 95% CI 24.8 to 50.4%). The diagnosis of cutaneous Lyme disease should be based on careful physical examination rather than laboratory testing.
Madison Area Lyme Support Group 