Archive for the ‘Activism’ Category

How Can Mother to Fetus Transmission of Lyme disease Be Rare When No One Is Counting?

For those of you just tuning in, the CDC website recently admitted that Lyme disease can be spread congenitally (mother to baby) but that it’s “rare.”  https://madisonarealymesupportgroup.com/2020/02/01/cdc-website-updated-today-possibility-of-mother-to-fetus-transmission-of-lyme-disease/

https://www.lymedisease.org/cdc-mother-fetus-lyme-transmission/

But, Lyme advocate Carl Tuttle makes a great point.  How can it be “rare” when no one’s looking for it or counting it?

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/25767675?

What’s going on here Secretary Azar?

FEB 18, 2020 — 

Please see today’s letter to the US Secretary of Health and Human Services……

——— Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: Alex.Azar@HHS.GOV, tickbornedisease@hhs.gov
Cc: (92 undisclosed recipients)
Date: February 18, 2020 at 11:40 AM
Subject: U.S. health agency acknowledges Lyme disease mother-to-fetus transmission

Feb 18, 2020

U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201
Attn: Alex Michael Azar II, United States Secretary of Health and Human Services

Dear Mr. Secretary,

I would like to call attention to the following Chronicle Herald article:

U.S. health agency acknowledges Lyme disease mother-to-fetus transmission
https://www.thechronicleherald.ca/news/provincial/us-health-agency-acknowledges-lyme-disease-mother-to-fetus-transmission-409641/

Centers for Disease Control and Prevention website was updated Jan. 27 to include mother to fetus as a possible way of transmitting the disease. The new section states,

“Untreated Lyme disease during pregnancy can lead to infection of the placenta. Spread from mother to fetus is possible but rare.”

Comment:

Mother-to-fetus transmission is rare? If no one is looking; no one is counting.
___________________________________

The 1988 publication below identified mother-to-fetus transmission despite antibiotic treatment:

Borrelia burgdorferi in a newborn despite oral penicillin for Lyme borreliosis during pregnancy.
Published 1988 Paul H. Duray, Infectious Diseases
http://www.ncbi.nlm.nih.gov/pubmed/3130607

The attached list of 26 references identified mother-to-fetus transmission of Lyme disease dating back to 1985 but it took 35 years for the CDC to acknowledge Congenital Transmission of Lyme?
https://www.dropbox.com/s/z10em0szgpm8bll/Congenital%20Transmission%20of%20Lyme%202015.doc?dl=0

What’s going on here Secretary Azar?

In reference to “other modes of transmission” please refer to the Tick-Borne Disease Working Group website:

Clinical Aspects of Lyme Disease Subcommittee Report to the Tick-Borne Disease Working Group
https://www.hhs.gov/ash/advisory-committees/tickbornedisease/reports/clinical-aspects-lyme-2020/index.html

Priority 3: Further evaluate purported human-to-human sexual transmission of Lyme disease.

“But because of the implications of sexual transmission, some members recommended that further studies be conducted to validate or refute this possible mode of transmission,….” [1]

Please see the following 2003 publication

‘Lyme disease’: ancient engine of an unrecognized borreliosis pandemic?
http://www.samento.com.ec/sciencelib/4lyme/lymediseasepandemic.pdf
T. Harvey, P. Salvato Diversified Medical Practices, Houston, Texas, USA

“The data suggest there may exist a much larger unrecognized pool of Bbsl-infected individuals sustained by persistent intra-human transfer that we provisionally call “Epidemic Borreliosis” Treatment modalities and schedules to eradicate B. burgdorferi from all patients regardless of infection route or duration must be created. If our experience holds, this will be a difficult task and will require serious and rapid commitment from all nations.”

“Our clinical experience strongly suggests that predictable, possibly inevitable Lyme disease transfer between sexually active couples occurs. The preponderance of infected spouses we have tested to date also exhibit positive serology or PCR for Bbsl presence.”

“Substantial data support the probability that human Bbsl infection can persist indefinitely.”
______________________________________

The attached PDF published in 1999 by the Canadian Office of Biosafety Information which was edited by the Colorado State University Office of Biosafety references laboratory acquired infections. https://www.dropbox.com/s/pjqxu42638071sq/Infectious%20Agent.pdf?dl=0

Section VI: LABORATORY-AQUIRED INFECTIONS: 45 reported cases up to 1976 with  2 deaths

SURVIVAL OUTSIDE HOST: Infected guinea pig blood – 28 to 35 days at room temperature, survives for short periods in urine.

Transmission by Contact via Feces, urine or Tick excretes-can Borrelia burgdorferi enter through intact mucous membranes?http://lymerick.net/Transmission-Bb-contact.htm

Per the study below, North Carolina has gone from the CDC declaring there was no Lyme disease 15 or so years ago to now declaring it an “emerging” state. Shows what happens when you exercise sufficient medical neglect: an unbridled epidemic!

Trends and Patterns in Lyme Disease: An Analysis of Private Claims Data
A FAIR Health White Paper, December 2019
https://s3.amazonaws.com/media2.fairhealth.org/whitepaper/asset/Trends%20and%20Patterns%20in%20Lyme%20Disease%20-%20An%20Analysis%20of%20Private%20Claims%20Data%20-%20A%20FAIR%20Health%20White%20Paper.pdf

__________________________

Summary:

It would appear that the US Centers for Disease Control has failed to recognize the severity of Lyme disease while aligning itself with the academics focused on suppressing evidence of Congenital Transmission along with persistent infection after aggressive antibiotic treatment. (Racketeering scheme)

These actions have misguided an entire medical community as some physicians here in New Hampshire claim they don’t believe in Lyme disease as depicted in the attached caricature. (Reference available upon request) We have lost three decades to this racketeering activity [2] while the attention and research dollars should have been used to find new approaches to fight this antibiotic resistant/tolerant superbug.

https://www.dropbox.com/s/dljlsmjbvk2trur/lyme%20toon.JPG?dl=0

“We are seeing so many young people, previously completely healthy & vital with lives totally de-railed by (the disease that does not exist) chronic Lyme disease.  The medical profession is entirely ‘blind’ to this devastating, complex, multi-system illness that, in aggregate, can be totally disabling. (not to mention, of course, the compounding factors of co-infections making their illnesses even more complex). To me, like playing 3 simultaneous games of chess against 3 opposing ‘Chess-masters’”  -Kenneth Liegner, MD

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 whatsoever; a public health disaster.

Lyme disease is a 21st Century plague hidden in plain sight as patient testimony all across America is describing a disease that is destroying lives, ending careers while leaving its victim in financial ruin. ….. Lyme disease is a public health emergency Secretary Azar!

Respectfully Submitted,

Carl Tuttle
Lyme Endemic Hudson, NH

Cc: New Hampshire Senate Health and Human Services Committee and the NH Medical Society.

References:

1 Stricker, R. B., & Middelveen, M. J. (2015). Sexual transmission of Lyme disease: Challenging the tickborne disease paradigm. Expert Review of Anti-Infective Therapy, 13(11): 1303–1306.

2 Racketeering antitrust lawsuit against the Infectious Diseases Society of America
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/22161412

Circular reasoning: “Suppress all evidence and then proclaim there is no evidence”

_________________

**Comment**

A moratorium on ALL Lyme vaccines should be demanded until the issues of congenital, sexual, and other means of transmission are cleared up as well as the very real issue of persistent infection.

Funny how the CDC will admit things (congenital transmission) right before they want to promote a vaccine that will line their pockets.  Coincidence?  I think not.

The following news story is a great example.  They used sick patients to explain how devastating this is only to be supposedly “saved” by a new magic-bullet vaccine:

 

 

 

 

Category:

Activism, Lyme, Uncategorized

Ink to End Lyme 2020 Isthmus Tattoo

http://lymewarrior.us/ink-to-end-lyme-2020  Go Here to Donate

Visit Isthmus Tattoo on Feb 20 for an awesome day of tattooing for Lyme Disease!

Ink to End Lyme 2020

Ink to End Lyme is a national event in which tattoo shops donate a day to Lyme research.

Last year we raised $18,800 for the amazing research of Eva Sapi at the University of New Haven!

How it works: Tattoo shops host flash days, auctions, or a variety of other events with proceeds benefiting research for a cure or improved treatment during February 2020.

If you are a tattoo shop interested in participating email lymewarriornonprofit@gmail.com
Download a flyer here to take to your local tattoo shop!

tattoos+for+Lyme+disease

*****Disclaimer**** Lyme Warrior does not encourage anyone with health issues to get a tattoo. Please discuss if a tattoo is right for you with a licensed trusted physician. The materials available at this web site are for informational purposes only and not for the purpose of providing medical or legal advice. The opinions expressed at or through this site are the opinions of the individual author and may not reflect the opinions of the nonprofit or any individual.

Over 427,000 people are being diagnosed with Lyme Disease annually.

Help us find a cure for those living with this disease.

 

Category:

Activism, Lyme

Free Lyme Treatment Masterclass – Tues. Feb 18th 4pm EST – Greg Lee

Free Masterclass on Tuesday Feb 18th at 4pm EST where Greg Lee will present Lyme disease case studies!

Click here to register for the Tuesday February 18th 4pm EST Masterclass II: https://lnkd.in/euRfF-e

He’ll be covering the microparticle essential oils, treatments, and other remedies that helped debilitated patients overcome stubborn Lyme inflammatory and toxic pain symptoms, calm anxiety, and replenish vital energy.

He’s creating this as a part of a training course for medical providers who want to get faster results in their Lyme patient’s pain, fatigue, and brain fog.

The Essential Oil Masterclass II Lyme Case Studies is free, of course.

Just to be clear…

This isn’t a webinar…

And not a typical Facebook Live…

And it’s not a boring ‘lecture.’

Thanks,

Greg

P.S. If you missed the first masterclass, you can see the replay by clicking here too: https://lnkd.in/eQgyEUA

Category:

Activism, Herbs, Treatment

How to Win Your Disability Case

https://www.painnewsnetwork.org/stories/2020/2/6/how-to-win-your-disability-case

How to Win Your Disability Case

By Mia Maysack, PNN Columnist

A dear friend and I have ventured through the Social Security disability process. We’re both severely impacted by chronic head pain caused by traumatic brain injuries. Her pain stems from a motorcycle accident, while mine is a souvenir from bacterial meningitis.

Our paths crossed while attending a lobbying event. We bonded instantly — not only because we could relate to each other’s pain — but because we pushed ourselves far past our limits. Accepting reality is tough on us both.

Neither of us are fluent in the practice of law, although my friend worked as a paralegal prior to her health deteriorating. Together, we’ve cultivated a few main points to be used as a guide for others who may be considering their own pursuit of disability. (See link for article)

____________________

**Comment**

Also, read the comments after the article.  I found this one most interesting and helpful:

I am a retired Social Security Disability Adjudicator. In order to be approved one must have a medical condition that prevents work and is expected to last one year or result in death. It is necessary to have medical documentation supporting your disability. Also, be prepared to document how your condition affects your Activities of Daily Living. If your doctor agrees that you are disabled, get what is called a “Medical Source Statement” from your doctor endorsing your disability. The Social Security Adjudicator must give what is called “weight” to this statement. This is a legal term used in disability reviews. In my opinion, you do not need an attorney. The three levels of review or Initial, Reconsideration, and Administrative Law Judge review. You do not need an attorney at ANY level. One other thing, if not allowed on the first and second level, apply for review within the timeframe given because if this is not done, you end up at the initial level rather than Reconsideration level as you did not apply timely. Also, pain is definitely supposed to be considered in any evaluation decision.

For more:  https://madisonarealymesupportgroup.com/2017/02/04/moores-v-colvin-help-for-lyme-patients-seeking-disability/

https://madisonarealymesupportgroup.com/2016/07/27/great-article-if-you-need-to-consider-disability/

https://madisonarealymesupportgroup.com/2017/07/26/when-the-campus-disability-office-needs-educating-about-lyme-disease/

https://madisonarealymesupportgroup.com/2018/03/07/vermont-lyme-sufferer-fights-to-get-disability-gets-nadda/

 

Category:

Activism, Lyme

HH’s Eric Hargan Tells Advocates: “We Can Bring About a Lyme Tipping Point”

https://www.lymedisease.org/hargan-lyme-tipping-point/

HHS’s Eric Hargan tells advocates: “We can bring about a Lyme tipping point”

Hargan from HHS

Eric D. Hargan is the Deputy Secretary of the Department of Health and Human Services (HHS). He delivered the following remarks to attendees at the recent “Lyme Action Fly-in” event in Washington DC. 

Feb 14, 2020

Good evening, everyone. It’s great to be with you all.

Before I begin, I want to specifically thank you all for your continual efforts, dedication and commitment to this important cause.

The work you do matters, and I know it’s a source of encouragement and hope to those struggling with Lyme disease and other tick-borne illnesses. So, thank you for the work you do.

Please know that you have strong support and attention on this issue from President Trump, Secretary Azar, and me. This entire administration stands with you.

While many of you know this issue very well, for those of you in the audience who may not be familiar with how we see the public health situation around tick-borne diseases, I’ll take a few moments to provide some broad context.

According to a 2018 CDC study, tick-borne diseases more than doubled in the last 13 years, and they comprised 77 percent of all vector-borne disease cases reported in the United States.

One of the reasons for this increase is the significant geographic expansion of ticks and, subsequently, the risk of tick exposure to the American people.

A number of factors that are likely to be contributing to the increase in geographic spread of ticks include changes in land use and expanding suburban development, as well as increased exposure of people and other mammal hosts.

Surge in cases

We have a number of tick-borne diseases that affect Americans, caused by bacteria, viruses, and parasites, but Lyme disease remains the most prevalent. According to the CDC, nearly 30,000 new cases of Lyme disease were reported in 2018, but actual cases are estimated to be closer to around 300,000.

This surge in cases is leading to growing public awareness around this issue. Some of you know that the popular singer, Justin Bieber, recently announced that he has Lyme disease. While I think I’m not quite the primary demographic for Mr. Bieber’s music, I know I can speak for us all when I say we wish the very best for Mr. Bieber in his battle against the disease and we’re thankful for his voice, literally, on this issue.

After Justin Bieber shared his diagnosis with the world, our HHS emails and HHS social media accounts surged with messages about Lyme disease. I want you to know that we, at HHS, hear you. We, at HHS, are listening to your input. We, at HHS, are responding and making Lyme and other tick-borne diseases a priority.

Trump administration response

How exactly is the Trump Administration prioritizing Lyme disease?

First, as I stated at the outset, fighting tick-borne diseases, and in particular, Lyme disease, is a priority for the President and this Administration. HHS will be leading the charge in this effort, as we do on many serious infectious disease threats—especially around the innovations we need to combat such threats.

Increasing the priority we place on Lyme disease means taking a strategic approach, and it means an increased federal budget for Lyme disease.

Earlier this week, we laid out a vision for how we believe that should work in the President’s 2021 budget, which was just released this week. The Budget requests $189 million, an increase of $58 million, to address tick-borne diseases. This includes $115 million for NIH to expand its research for tick-borne disease, including on prevention, diagnosis, and treatment; and it includes $66 million for CDC activities like tick surveillance, insecticide resistance activities, and development of improved diagnostics. This is a $14 million increase compared with the 2020 enacted level for vector-borne disease activities with CDC—a more than 25 percent budget increase in one year.

The President’s 2021 Budget also proposes an action plan that will prioritize and advance the most promising candidates and technologies for diagnosing and preventing Lyme and other tick-borne diseases.  This plan, which would be led by Admiral Brett Giroir and his Office of the Assistant Secretary for Health, in partnership with NIH, CDC, and the FDA, addresses four primary areas: innovations in diagnosis and advanced detection, developing vaccine-based prevention, ensuring robust domestic surveillance of vector-borne diseases, and providing additional knowledge to advance the best treatment and prevention options.

Kay Hagan Tick Act

The action plan laid out in the budget builds on the Kay Hagan Tick Act, which was signed into law by President Trump.

As many of you know, the act was named after the former North Carolina Senator, Kay Hagan, who tragically died in October after a years-long battle with encephalitis, caused by Powassan virus, an emerging tick-borne virus. Much like other tick-borne diseases, cases of Powassan virus continue to rise and, unfortunately, for this virus, there is no vaccine and no specific therapy to combat it once it’s contracted.

The Act requires the development of a national strategy to combat vector-borne diseases, and supports CDC research grants and funding to state health departments in areas that are considered high risk for vector-borne diseases.

Admiral Giroir and the Office of the Assistant Secretary for Health, like our plan in the budget, has been tasked with leading the development of this national strategy.

As Admiral Giroir mentioned at last month’s public meeting of the Tick-Borne Disease Working Group, his office is the ideal place to locate this important work. It is home to the Office of Infectious Disease and HIV/AIDS Policy, which works as a coordinator among HHS operational divisions on infectious challenges like this.

Admiral Giroir and that office also bring to this challenge the experience of having launched President Trump’s initiative to end the HIV epidemic in America. As Herculean as the Ending HIV Epidemic initiative is, in many respects addressing tick-borne diseases is even more challenging.

Unlike with HIV, we still lack fundamental tools like sensitive, early diagnostics; currently marketed vaccines; and basic scientific understanding of host-tick pathogen biology and interactions.

The scale of these challenges

I raise these issues not to discourage you, but to underscore that we at HHS understand the scale of the challenge we face—and to note how we, as Americans, do solve tough problems when we fund science and focus our attention and collective ingenuity to finding a way. We did it with HIV/AIDS, which today is a manageable condition. We did it with Hepatitis C, which today is curable.

To confront the multifaceted challenges surrounding Lyme disease, we truly need a holistic approach that includes not only physicians and medical scientists, but also epidemiologists, environmental scientists, veterinarians, entomologists, and many other professionals.

No silver bullet

There likely will not be a silver bullet for fixing the problems caused by tick-borne illnesses. We must fight this battle on many fronts: by decreasing the ticks in the environment through traditional or innovative means; by better managing the wildlife that carry the ticks; by immunizing people against the viruses or find ways to immunize against the tick itself; and of course, driving innovation toward more sensitive and reliable diagnostics, therapies, and preventive measures including vaccines.

That is an immense array of actions we need to take, and none of it will be possible without continued engagement from the community leaders and activists who’ve brought new levels of attention to this issue.

The Trump administration has made achieving better health for all Americans a top priority, especially through tackling impactable, emerging, and neglected health challenges. Sadly, in some sense, tick-borne disease represent all three—but they also represent an area of focus for us and an area where we believe we can make real progress.

We’re grateful for the bottom-up work that so many have done to illuminate this challenge and drive action.

Thank you for giving us the hope that progress can be made, and I look forward to working with all of you to make it happen. We fully support your community momentum with Lyme Innovation. You have the full support of HHS and the Trump Administration.

This is just the beginning; together, we can bring about a “Lyme Tipping Point” to transform today’s landscape.

Thank you again for having me here this evening.

___________________

**Comment**

Research money is only as good as the research it supports – as well as the type of researchers doing the work.  If it’s going to be “same-o-same-o” biased researchers collecting data on climate change, patients are doomed.  We need better testing, effective treatments, recognition that this is typically a polymicrobial illness (many pathogens), that borrelia mutates and forms biofilm as well as persisters which survive antibiotic treatment as well as the immune system, and that due to this patients can have a persistent/chronic infection(s).  We need transmission studies on other bugs, sexual & congenital transmission – as well as blood transfusion and organ transplants, so the medical world understands how severe this is and takes appropriate steps.

 

Category:

Activism, Lyme