Archive for the ‘Activism’ Category

Faulty CDC Lyme Webpages. Do NOT Fund This Organization Any Longer

**UPDATE**

Go here to tell your Congressman, “Don’t give the CDC one more dime, and no more data collection.”

Go here to read WI Senator Ron Johnson’s letter to CDC’s Director Rachelle Walensky on the fact the CDC admits it gave false information about COVID shot surveillance.

  • It inaccurately responded to a FOIA request and stated it conducted a certain type of analysis more than a year before it actually did.
  • The CDC not only said that the team didn’t conduct any abstractions or reports through October 2021, but that “an association between myocarditis and mRNA COVID-19 vaccination was not known at that time.”
    That statement is false.
  • By April 2021, the U.S. military was raising the alarm about post-vaccination heart inflammation, and by June 2021, the CDC was publicly acknowledging a link
  • The CDC promised in January 2021 that it would perform a specific type of data mining analysis on the VAERS reports called proportional reporting ratio (PRR). But when asked by CHD for the results, the CDC said that “no PRRs were conducted by the CDC” and that data mining “is outside of [the] agency’s purview.”
  • Dr. John Su, who heads the CDC’s VAERS team, told The Epoch Times in an email that the CDC started performing PRRs in February 2021 “and continues to do so to date.”
  • The CDC is now saying that both the original response and Su’s statement are false.
  • The CDC states it “misinterpreted” the request despite the fact the FOIA request specifically mentioned PRRs and their response mentioned they did not do PRRs.  Nice try.

What does this mean?  The CDC was not analyzing VAERS for early warning safety signals for WELL OVER A YEAR after the “vaccination” campaign began.  Also, the CDC hasn’t released the PRR results. 

https://www.lymedisease.org/cdc-lyme-pages-need-modifications/

The CDC’s Lyme webpages need some serious modifications

Aug. 23, 2022

By Dorothy Kupcha Leland

Subcommittee reports from the federal Tick-Borne Disease Working Group are now available for you to read on the Health and Human Services website.

Should you care? Yes. And here’s why:

These reports will help the Working Group decide what to ask Congress to do about Lyme disease and other tick-related conditions.

One of the most important subcommittees to Lyme patients is “Access to Care.” It’s chaired by Dr. Elizabeth Maloney and Captain Rebecca Bunnell, of the US Public Health Service.

It deals with the many barriers that prevent people from getting properly diagnosed and treated for Lyme disease.

The group’s report focuses on three key factors that account for many of the health disparities that patients with tick-borne illnesses experience:

  • Patient-encountered barriers,
  • Clinician-encountered barriers, and
  • Medical educational barriers.

What does CDC website say about Lyme disease?

While there are a lot of nuggets in this report, I’d like to highlight the section that focuses on what the CDC website says about Lyme disease.

This is often one of the first places that patients (and their doctors) turn to for information. As a result, it’s one of the first barriers placed in the path of Lyme patients in need of treatment.

The report states:

  • The content [of the CDC’s Lyme webpages] does not provide an accurate review of the current body of knowledge and fails to acknowledge what remains unknown, what is uncertain, and what continues to be debated [about Lyme disease].
  • The webpages miss the opportunity to fully describe this multifaceted disease, its many and varied presentations, and the consequences of missed and delayed diagnosis and treatment. Although much of the content is factual, it lacks sufficient depth and, at times, perpetuates common misconceptions.
  • The webpages on signs and symptoms do not provide detailed information regarding potential disease symptoms and signs or elements of the medical history that make Lyme disease more or less likely. Therefore, clinicians are ill-equipped to estimate patient-specific, pre-test probabilities. The section on diagnostic testing does not adequately discuss the well-known limitations of serologic testing.
  • Treatment recommendations do not acknowledge the low quality of the available evidence on which they were based and leave no apparent room for clinicians to exercise clinical judgment or engage in shared decision-making.
  • Although a limited list of references follows the treatment recommendations for erythema migrans, Lyme carditis, neurologic Lyme disease, and Lyme arthritis , these references do not appear to represent a systematic and comprehensive review of the pertinent evidence. Hand-cultivated lists are problematic because they often reflect the anchoring and confirmation biases of those selecting the evidence to be reviewed, which may perpetuate particular points of view, or even errors.
  • The content regarding PLD/CLD  [persistent Lyme disease/chronic Lyme disease] appears skewed in that it does not provide clinically helpful information or references regarding the condition, potential etiologies, knowns and unknowns, or the diverse and often conflicting scientific viewpoints that mark this challenging health problem. The list of references is overly weighted toward the risks associated with treatment and provides an inaccurate assessment of the potential benefits.
  • Although information about the scientific evidence may be too detailed for the general public, it could and should be included on the “health care providers” webpage. At present, this webpage offers an inaccurate portrayal of the available scientific evidence and current state of clinical uncertainties. This is best exemplified by including a video of a patient discussing his misdiagnosis of Lyme disease while omitting any discussion or videos of patients with Lyme disease whose lives were irretrievably altered by diagnostic and therapeutic delays when Lyme disease was erroneously diagnosed as something else, or the complex problem of PLD/CLD.

So what to do about it?

Later in the report, the subcommittee recommends:

Fund and support a directive for CDC to conduct a review of CDC webpages and the current CDC TRAIN CME [continuing education modules] pertaining to the prevention, diagnosis, and treatment of Lyme disease to determine whether they best reflect the current state of the science and appropriately delineate areas of scientific uncertainty.

Sounds like a pretty good idea, don’t you think?

CDC Director Dr. Rochelle Walensky recently called for an organizational overhaul of the CDC, due to the agency’s missteps during the COVID pandemic.

A similar overhaul is needed for all the CDC’s missteps related to Lyme disease–including correcting the website problems listed above.

I hope the Working Group takes the subcommittee’s advice, and asks Congress to fix this–pronto.

Here are links to all the subcommittee reports:

2022 Subcommittee Reports

2022 Access to Care Subcommittee Report to the Tick-Borne Disease Working Group

2022 Clinical Presentation and Pathogenesis Subcommittee Report to the Tick-Borne Disease Working Group

2022 Diagnostics Subcommittee Report to the Tick-Borne Disease Working Group

2022 Disease Prevention and Treatment Subcommittee Report to the Tick-Borne Disease Working Group

2022 Tick Ecology Subcommittee Report to the Tick-Borne Disease Working Group

Next meeting of the Working Group is October 4-5. As usual, the public can tune in to watch it live. We’ll post details of that meeting when they become available.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, Board President of LymeDisease.org. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

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**Comment**

I couldn’t disagree more with the recommendation to “fund the CDC to conduct a review of CDC webpages and the current CDC TRAIN CME [continuing education modules].

Are you for real?

The corruption, fraud, and collusion in this organization is long, prolific, and shows no signs of slowing.

This organization needs to go now!

An independent inquiry made by folks without conflicts of interests (receiving funding from Big Pharma, government, etc) into the mishandling of Lyme/MSIDS.  When will Lyme advocates learn, acknowledge, and act upon the fact that working with an enemy of 40 years has been a waste of time, effort, and tax dollars – not to mention stressful and fruitless?

DEFUND the CDC & break the public health monopoly!

Category:

Activism, Lyme

Celebrating “Generation Lyme Day” On Sept. 24

https://www.lymedisease.org/generation-lyme-day-2022/

Celebrating “Generation Lyme Day” on Sept. 24

by Jennifer Hoffmann, Generation Lyme board member

There was no holiday to celebrate the people of the Lyme community. So we created one.

On Saturday, September 24th, Generation Lyme will host the second annual Generation Lyme Day.

It’s an all-day virtual event honoring everyone whose lives are impacted by Lyme disease. We will celebrate each other for who we are, far beyond our illness, and recognize wherever we are in our journeys.

Generation Lyme is a community for people battling Lyme disease. We know how isolating it can be to live with Lyme, and we’re here to change that.

Meet-Ups

We host online Meet-Ups several times a week for patients, parents, partners, and supporters. We have a growing roster of dedicated volunteer hosts and cover several needs, with Meet-Ups for parents, partners, supporters, late-nighters, international participants, men, women, college students, and the BIPOC and LGBTQIA+ communities.

Gen Lyme Meet-Ups are ideal places to ask questions, share what’s on your mind, or just listen. You can connect in a safe space with people who understand what you’re going through and make new friends. We also share patient stories to show what it’s like to live with Lyme disease and help people connect with others who understand.

Facilitated by our Generation Lyme Board–Jesse Ruben, Brooke Stoddard, Haley DiBiase, and Jennifer Hoffmann, Gen Lyme Day is a holiday worth celebrating. It’s a day to bring us together, offer compassion, and uniquely uplift our cause.

The event will feature fun, relaxing, at-home ways to enjoy a day as a community. We will share stories, amplify diverse voices, go live on social media throughout the day, interview guests from across the country, record a live episode of The Generation Lyme Podcast, host a Meet-Up, and have an after-party (with a concert)!

Our message is simple: We see you, we hear you, we value you, and we celebrate you. We are thrilled to bring joy to a community that doesn’t get to experience it often enough.

You can join Gen Lyme Day from wherever you are. It’s an experience that anyone and everyone can attend for free and from home. Gen Lyme Day is for you whether you’re feeling symptomatic, unusually great, or anything in between. The reality of your experience is welcome.

For more about how to participate in this year’s Gen Lyme Day, click here.

To view everything we did in 2021, click here.

Join us on Saturday, September 24th, for the second annual Gen Lyme Day!

Generation Lyme is an initiative of Project Lyme, a 501(c)3 nonprofit dedicated to tick-borne disease research, education, advocacy, and patient support.

Category:

Activism, Lyme

Private Medicine Trumps Private Equity

Private Medicine Trumps Private Equity

By Marilyn M. Singleton, MD JD –https://marilynsingletonmdjd.com/

Over the last couple of years, we’ve been living in a frenzied political atmosphere of inflation worries, unaddressed crime, Covid, monkeypox, and a variety of social issues. These are distractions from thinking about the big picture: the march toward government and corporate control over our lives, including absorbing medical practice into the statist-corporate complex.

While many say that COVID-19 brought out the flaws in public health, it has also highlighted the joys and advantages of private practice medicine. People who are disappointed in the oft-times unscientific public health recommendations and mandates have benefited from seeking advice from private practitioners. Sadly, we are on the road to losing private practice, the heart of good medicine.

A recent article about a private equity purchase of a small rural hospital chronicled in great detail how the firm ran the hospital into the ground. The residents were left with no hospital in their area. That was but one example. Until the last 10 or 15 years, most hospitals were owned either by mainly religious nonprofit entities or by states and cities, with ties to medical schools. Private equity ventures have quadrupled over the last 10 years, and have spent approximately $750 billion during that time period. As Bain Capital put it, 2021 was a “banner year” fueled by an aging population and more chronic illnesses. Private equity firms now control a large swath of hospitals, physician practices, ERs, nursing homes, and hospice centers.

For years, health policy experts have been warning about the dangers of private equity and consolidation in medical services. The focus on return on investment by private equity owners puts profits over patients. One study found that hospitals increased their prices after being acquired by private equity firms. Additionally, studies in nursing homes and dialysis centers have found private equity ownership is associated with not only higher prices, but a decrease in quality of care.

Concurrently, consolidation has been on a roll. Five for-profit insurers now control 43 percent of the market, more than 60 percent of community hospitals belong to a health system, and less than half of physicians own part of a private practice. A large California study found that consolidation of the hospital, physician, and insurance markets increased prices of services as well as ACA premiums. ….

Legally, there is not much we can do about it except protest with our feet. Seek out private practices where you are treated as an individual human being, not an income generator. The ideal practice is a cash-based practice or direct primary or specialty care practice. With direct primary care, a monthly fee covers all doctor visits, drugs dispensed at the office at wholesale prices, and 24/7 access to your doctor. Odd as it may seem, paying cash to see the doctor or have outpatient surgery can be less expensive than buying insurance with its co-pays and high deductibles. All you really need is hospital insurance (unless you are a billionaire). ….

It is up to us to save the patient-physician relationship – and just maybe our republic!

READ FULL ARTICLE: https://aapsonline.org/private-medicine-trumps-private-equity/

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**Comment**

Hopefully, more hospitals will see the light in offering options to patients and will choose patient health and ethics over the dangling carrot of Federal reimbursement. The best way to protest is with your feet. Independent doctors are saving lives, despite being heavily persecuted. They saved mine.

For more:

Category:

Activism

Hospital With Patient Options Enters 9th Month Without Federal Reimbursement. Despite “Vaccine” Mandates Being Dropped, Wisconsin Healthcare Workers Who Had Exemptions Must Get Novavax Shot Or Lose Job

https://www.theepochtimes.com/hospital-that-allows-for-patient-options-in-healthcare-enters-ninth-month-without-federal-reimbursement

Hospital That Allows for Patient Options in Healthcare Enters Ninth Month Without Federal Reimbursement

By Matt McGregor
September 3, 2022

An independent community hospital in Texas, known for allowing patients to choose individualized care plans, is entering its ninth month without Medicare reimbursement for reasons one patient advocate says “don’t add up.”

The Centers for Medicare and Medicaid Services (CMS) terminated its agreement with United Memorial Medical Center (UMMC) on Jan. 11, 2022, “based on continued serious findings of deficiencies” showing a “failure to meet the minimum required patient safety and quality standards,” CMS told The Epoch Times.  (See link for article)

__________________

SUMMARY:

  • Priscilla Romans, a former nurse who exited government funded medicine, and owner of the patient-advocacy business Graith Care, has had clients flown to this independent hospital due to the fact they give patients options – not just the top down dictates of the federal government which has bribed hospitals with money to conform to their policies.
  • Romans states there are 64 million enrolled Medicare patients who deserve access to the care options they want.
  • CMS, through the CARES act, reimburses (bribes) hospitals for using “brutal” COVID treatment protocols known as the Fauci death protocol, which includes remdesivir, which is known to be toxic and kills 53% of those who take it. 
  • Hospitals make more money if you die from COVID than if you recover.
  • One such patient option was the Front Line COVID-19 Critical Care Alliance (FLCCC) treatment protocols, which include hydroxychloroquine, zinc, and vitamin C.
  • Attorney Tom Renz asks why CMS hasn’t investigated the hospital that malnourished and neglected the patient who was moved to another facility.  (As with Lyme literate doctors, investigations such as these nit-pick until they find any little nit – making the doctor/hospital look bad.  It’s really a form of punishment for dissenters, not that infractions don’t ever occur, but they occur everywhere, particularly when hospitals are busy and crowded).
  • Hospitals are taking patients off ventilators without informed consent and without family involvement. When relatives advocate for their loved ones to keep them vented, they are told their position “isn’t supported by science.” In one case a judge sided with the family member and helped organize a transfer to a new facility.  The patient was found to be malnourished, dehydrated, and 30 lbs underweight – clear signs of patient neglect.  He made tremendous progress at the new facility but died essentially due to how he was treated for so long at the first facility.
  • Similarly to Dr. Simon Gold a medical doctor and also an attorney who started America’s Frontline Doctors, who was unfairly arrested and is now doing jail time for a misdemeanor simply for peacefully speaking at the Capital in January, UMMC is being used as an example to other hospitals to show what happens to those who don’t toe the line.
Welcome to the New Normal.

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https://www.axios.com/2022/09/09/companies-are-dropping-vaccine-mandates

Sep 9, 2022

Companies are dropping vaccine mandates

Illustration: Sarah Grillo/Axios

Excerpts:

Some companies are rolling back mandates for employee COVID vaccination — but few are making official public statements about it.

Why it matters: These moves signal that we’ve shifted into a new chapter of the pandemic — and that employers are desperate to get people back to the office.

What’s happening: “[Companies] decided that the rationale for [mandates] had become weak enough that they don’t want to continue,” Jeff Levin-Scherz, population health leader at Willis Towers Watson, tells Axios.

Zoom out: The White House yesterday called on businesses to take certain actions to protect employees and customers from COVID-19 this fall. Mandates weren’t on the list.

Yet, despite the fact these injections don’t stop transmission, infection, severe illness, or even death – and have actually been linked with more reports of severe reactions and death than any other “vaccine” in the history of VAERS, which historically only captures 1% of reactions:

Wisconsin Healthcare Workers Who Had Religious, Medical Exemptions Must Get Novavax COVID Shot or Lose Job

A Wisconsin hospital this week said it is withdrawing medical and religious exemptions for some employees from the hospital’s COVID-19 vaccine mandate, giving those employees until Sept. 21 to get the Novavax vaccine.

The hospital is Froedtert & the Medical College of Wisconsin, which operates 11 hospitals and more than 45 health centers and clinics throughout the midwest and employs more than 2,000 physicians.

Novavax was granted Emergency Use Authorization (EUA) in July.  Prior COVID-19 shots made by Pfizer, Moderna and Johnson & Johnson used fetal cell lines from unborn fetuses in various stages of development and testing, but the Novavax shot is a protein-based technology purposely created to entice “vaccine” holdouts with ethical concerns about using human fetal cell lines.

But, per usual, few are talking about safety and efficacy.
The ones that are have been jailed, discredited, and bullied.  And the list keeps growing.

Dr. Meryl Nass, a member of the Children’s Health Defense (CHD) scientific advisory committee, pointed out that the Novavax shot contains a novel adjuvant, Matrix-M, “so it is not really an old-fashioned shot.”

Category:

Activism, Treatment, vaccines, Viruses

A Deer, A Cow, And Learning to Heal From Lyme Disease

https://www.lymedisease.org/deer-cow-lyme-disease-bennett/

A deer, a cow, and learning to heal from Lyme disease

Sept. 6, 2022

by Jamie Bennett

What is your health worth to you? If lost, how far would you go to get it back? These are questions I’ve had a lot of time to think about.

I was living the life. Upwardly mobile in my career, a major crimes detective in her prime. Sure, I had the occasional strep throat, flu, or overall yucky day, but nothing that I thought was different from everyone else. Things were under control, predictable, and manageable…until they weren’t.

After moving to a 26-acre farm and getting pregnant with my third child, things started to change. I. Was. Exhausted. I could barely function, and things that we normally don’t even think about became major blocks.

I had to crawl up stairs because my legs burned, I was short of breath, my heart was on its own agenda, and my head wanted to explode. Taking a shower seemed like a marathon, and I would have to rest when I was done.

The doctors assured me that these were just pregnancy side effects. They said these problems would go away when my son, Thomas, was born.

No symptoms resolved

Once I was a stay-at-home mother of three, however, things never got better. In fact, they were worse. None of my symptoms resolved, but I was too focused on my newborn son to make them a priority.

My little man, who never cried when born, began to regress. Each time he was given a vaccination he would “disappear” for a few days. Then, at 19 months, he didn’t bounce back. My son no longer looked at me. He looked through me with glazed-over eyes. He became completely nonverbal and showed no interest in interacting with others. Classic signs of a spectrum disorder.

After my son’s diagnosis of high-functioning autism, I started biomedically treating him. I was living on adrenaline, squeezing every little bit out of my already-depleted reserves to stay up and research. I altered his diet, got him into speech and physical therapy, and eventually put him in the Head Start program in our county.

We traveled for hours, crossed state lines, and stayed overnight in hotels to see specialists. If it was available, we did it. And he improved! Our son went from having a low IQ to one that was above average. We were making progress, but still, it seemed we were missing something.

Meanwhile, my health that had been put on the back burner needed to be addressed. I was getting worse, and I needed to figure out why. I saw primary care physicians, neurologists, endocrinologists, infectious disease specialists, cardiologists, you name it!

They diagnosed me with a million things, from hypoparathyroidism to congenital heart defects, but no one could find the smoking gun—the root cause of all of my health problems.

I had muscle biopsies, EKGs, EMGs, MRIs, SPECT scans, radioactive scans, heart ablations, bones fused, and organs removed. In response, doctors offered narcotics and various speculations about a cause. First, I was being poisoned. Then, it was psychosomatic. From there I had muscle myopathy, rheumatoid arthritis, lupus, early onset Parkinson’s, and ALS. We continued to treat the symptoms without knowing their cause.

The smoking gun–Lyme disease

Eventually, a doctor found my smoking gun—Lyme disease and its many co-infections. Evidently, I had contracted Lyme and other tick-borne diseases before conceiving my son, and then transferred it to him in utero. In addition, my defiant and academically struggling daughter also tested positive for Lyme.

Fast forward through several years of homeschooling, PICC lines, oral antibiotics, herbals, special diets—including the Specific Carbohydrate Diet and the Autoimmune Paleo protocol—and more doctor visits than we could count. Here you will find us chugging along just like everyone else. Unfortunately, we’re not like everyone else.

Every single person in my family has been diagnosed with at least one tick-borne disease, if not several.  Yet, healing is possible. My son is now testing gifted and in a math program two years above his grade. My daughter is climbing the corporate ladder, one of the youngest to have achieved her position at the company where she works.

And me? Well, after researching the effect of nutrition and biomedical intervention on Lyme, autism, inflammation, and autoimmune disease for two decades, I went back to school.

Functional nutrition

I earned a certification as a Functional Nutritional Therapy Practitioner and Autoimmune Paleo coach so I could help others from a nutritional and biomedical standpoint. Emotionally, I’d say we’re not worse for wear, but our health will always keep us on our toes.

Through all of our difficult times, my mother was my rock, biggest cheerleader, and best friend. Three years ago, she encouraged me to share our story, and I took up that challenge.

The result is a book called There’s A Deer At The Door And A Cow In The Mudroom: Learning to Live while Living with Lyme. My goal is to help others by sharing what I learned from those dark years. Our family’s transformation through faith, farming, and chronic illness was a roller coaster of emotions and learning lessons but certainly not all bad.

The deer my daughter rehabilitated was as instrumental to her recovery as her medication. Waking to find the deer waiting at the door gave her a reason to get up and continue to fight each day. The calf–it really was in the mudroom. It become one of the many farm lessons that molded my children, teaching them to live each moment as though they were never sick.

My mother didn’t live to see the publication of this book, but she was instrumental in helping to bring it about.

My family healed through our various experiences. I hope that learning about what we did can help you heal, too.

Jamie Bennett maintains a website geared towards helping people obtain optimal health. Click here for more information about her book.

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**Comment**

Great read and the book sounds marvelous.  Notice the little nuggets of truth:

  • A “vaccine” once again seemingly served as a trigger for health problems.  They are not safe and effective for ALL people and the risk/benefit ratio MUST be considered by each person. Medicine is not “one size fits all,” and the COVID debacle set us back to the Dark Ages in this area.  Never allow someone bully you into making a decision that YOU and you alone will have to live with for the rest of your life.
  • Necessity pushed this mother to find answers. There are silver linings in having to deal with poor health if you refuse to quit.  There will be dark days for sure, but keep on chugging.
  • Notice how this woman’s mother was her bulwark.  Be a bulwark for someone.  You will never know how your words could help someone out of a dark pit.  I’ve shared it before but it’s worth repeating: I was told by my children’s martial arts teacher, “Lyme has nothing on you.  You have an indomitable spirit and you will survive this.”  At the time I felt anything but indomitable and was questioning the reason for even trudging on.  But, after those words were uttered, I felt myself revive deep inside.  I will never forget those life-affirming, saving words.
  • Notice all the misdiagnoses.  This is a common theme with Lyme/MSIDS and until the root issue of tick-borne illness is dealt with, you will not fully regain your health; however due to politicization, it is often the last thing dealt with.
  • Notice how ALL the things learned and used had a cumulative effect on health.  While addressing the infection(s) is crucial, there are many other facets that also need addressing such as detoxification, hormones, minerals/vitamins, exercise, sleep, psychological issues including anxiety, PTSD, trauma, and so on – and each patient has different needs requiring different methods and treatments. This illness is highly individualized and takes a savvy approach – again, not a “one size fits all” approach – which allopathic medicine ascribes to.
  • Notice the daughter’s rehabilitation of a deer was as important to her recovery as directed treatment.  This deer helped her get her mind off of herself.  We all need something to help us overcome our own selves!  We can actually stand in our own way in healing.  We need productive, healthy outlets to focus on with what little energy we have.
  • Some of the best ideas come from other patients willing to take the time to share their stories and what helped them.  Even if their ideas don’t work for you, it will nudge you to keep looking.
NEVER EVER QUIT!

Category:

Activism, Autism, diet and nutrition, Gut Health, Heart Issues, Lyme, Treatment, vaccines