Archive for the ‘Uncategorized’ Category

Another Conflict of Interest in TBD Working Group

https://www.linkedin.com/pulse/urgent-action-replace-kristen-honey-vice-chair-group-luche-thayer/

URGENT ACTION: Replace Kristen Honey, Vice-Chair of the Tick-Borne Disease Working Group

Jenna Luche-Thayer,

Friends from all countries,

We really need to replace Kristen Honey and FAST. Given the information I have verified and documented, every day I am more concerned regarding how she claims to represent Lyme patient priorities. Nevertheless, she continues to play a central role in the Report process of the Tick-Borne Disease Working Group. This Report may have GLOBAL ADVERSE IMPACT on access to diagnosis and care.

Once you’ve had a chance to read the complaint, and if you agree the information contained makes Honey an unsuitable Vice-Chair for the Tick-Borne Disease Working Group, then …

…. please, AS SOON AS POSSIBLE, copy, cut and paste the complaint and mail it in (revisions are fine). The complaint is addressed to the person responsible for FACA, the Designated Federal Officer (DFO) of the Working Group and the alternate DFO.

I also ask that you share this GLOBALLY and ask others to TAKE ACTION.

Remember, we got rid of Wolitski! We can do this!

Thanks – Jenna

…………………………………………………………………………………………………

To:   Tynetta.Dreher@hhs.gov, James.Berger@hhs.gov, Kaye.Hayes@hhs.gov

Cc:  brett.giroir@hhs.gov

Subject:  Failure to meet 21st Century Cures Act requirements and other Concerns

Dear Ms. Dreher, Mr. Beger and Ms. Hayes,

I have sound reasons to respectfully ask that Vice-Chair of the Tick-Borne Disease Working Group, Kristen Honey be immediately removed from her post:

1. apparently she has not truly represented a federal officer for the Working Group

2. while serving as Vice-Chair she is apparently seeking financing to bring a patent to market ‘to cure’ Lyme patients (and perhaps other patient groups)

3. her documented orientations toward healing has caused great concern among many in the Lyme community

I ask she be replaced with a federal officer familiar with complicated and persistent Lyme and coinfections, including tick-borne diseases and treatment options that have meet internationally accepted standards for clinical practice guidelines.

Not A Federal Officer

The Vice-Chair of the Working Group, Kristen Honey, is a Senior Research Scholar from Stanford University on assignment to the Office of Management and Budget, and apparently not a federal officer [1].

Her resume is on LinkedIn [2] and states from “January 2017 to present Senior Policy Analyst via Stanford University Interagency Personnel Agreement (IPA)”. The Intergovernmental Personnel Act (IPA) of 1970 allows the temporary assignment of skilled personnel between Federal and non-Federal entities.

However, since December 2017, Honey has been presented by HHS to the public as holding a White House post. Therefore, many of the those in the Lyme community assumed she was a federal official and met the criteria to be one of the seven federal voting members of the Working Group as required by law as required in the 21st Century Cures Act.

The SIX federal members are: 1. Charles Benjamin (Ben) Beard, 2. Commander Scott Cooper, 3. Dennis M. Dixon, 4. Captain Estella Jones, 5. Allen L. Richards and 6. Vanila M. Singh.

The EIGHT non-federal members are: 1. John N. Aucott, Chair, 2. Kristen Honey, Vice-Chair, 3. Wendy Adams, 4. Richard Horowitz, 5. Lise E. Nigrovic, 6. Robert Sabatino, 7. Patricia V. Smith and 8. Robert Smith

On June 16, 2018, during the Public Meeting of the Working Group I disclosed Honey’s legal status (in public comments) and now many in the Lyme community are disappointed to find that the Working Group leadership perpetuated what appears to be a deception regarding the Vice Chair’s federal status.

We also note that this failure to meet the basic membership requirements of the Working Group as cited in 21st Century Cures Act may invalidate all the Working Group’s efforts to date.

Fund Raising and Conflicts of Interest

Honey has a website  that claims [4] (see under Kristen’s Journey) “… based on limited scientific information and guided by my own personal tolerance for the unknown and risk (and after six months of FDA-approved antibiotics/antifungals failing to work), I ultimately chose the unknown. I went outside the bounds of FDA-approved treatments and self-administer intravenous injections of nanominerals … Fortunately, the treatments worked … Today, after two and a half years (from 2009 to 2012)… I am symptom free and 100% Lyme free.”

(See under Book) “… the novel IV nano-mineral solution — which Dr. Honey pioneered and calls her “lynchpin” for Lyme recovery and thriving wellness — has been patented using open-source intellectual property (IP)…If you or your organization wish to support Dr. Honey’s vision to bring this IV nano-mineral solution to market through open-source IP and open-source medicine, we welcome contributions and collaborations [5].”

Apparently, while ‘appearing to be a federal officer’ on the Working Group, Honey’s website is also actively seeking funding to bring her non-FDA approved technology for Lyme patients to market and indicates it will cure the disease. This does not appear ethical.

Optics, Orientation and Related Concerns

The follow information has been widely disseminated in the Lyme community and generated much concern regarded Honey’s claims to represent patient interests and priorities. 

Rachael Bleau [6] is a Doctor of Metaphysical Science. (Bleau’s Doctor degree can be earned on-line from the UniversityofMetaphysics.com.) Honey is featured in Bleau’s book titled Clear Your Way to Freedom —the key to unlocking your whole healing [7]. According to this book, Bleau uses a spiritual/religious belief in ‘Ascended Masters’ to heal persons [8].

Adherents of these Ascended Master Teachings, such as the Great White Brotherhood [9] believe that the All-Pervading Presence of God does not act nor create except through Its Individualizations. All creation comes forth through These Individual Identities and is sustained by Them. Included in this Cosmic Hierarchical scheme are Solar Logoi, Elohim, Sons and Daughters of God, Ascended Masters, Cosmic Beings, the Twelve Solar Hierarchies, Archangels, Angels, Beings of the Elements, and Twin Flames of the Alpha-Omega Polarity sponsoring Systems of Worlds and entire Galactic Systems.

Page 78 of this book describes Honey’s general background, confirming it is the same Kristen Honey who is the Vice Chair of the TBDWG [8]. According to this book, Bleau used her ‘spirit team’, which includes Ascended Masters, to heal Honey from illness including Lyme disease (page 76). On page 74, Bleau writes about finding an ‘unhappy attachment’ that was hooked on Honey’s left adrenal and ‘hanging on for dear life’. In this passage the author states she removed the unhappy attachment while Honey saw ‘black energy dissipating’. Bleau goes on to state that Honey then fills up with ‘a golden light like honey’ ‘just like her last name’.

On page 76, Bleau refers to the root energy of Honey’s debilitating Lyme disease as being evil. Bleau’s spiritual team was assembled and gave her instructions on where to place her hands on Honey. Bleau found ‘a dark seat of energy’ on Honey’s right thigh. Bleau then ‘profiled the energy’ to locate its home and claims to have heard a hissing sound, like that of a snake, when she pulled the evil energy from Honey’s body.

According to a 2013 blog by the Better Health Guy, Honey gave a presentation at the Integrative Lyme Solutions: The Evidence Basis Conference on June 21-22, 2013 in Dallas, Texas [10]. Honey shared her own personal recovery story. Honey spoke about how she was very sick, ‘likely from tick bites’ and struggled with Lyme infection, Babesia, Bartonella, Ehrlichia, and Mold. In her presentation, Honey noted:

×    she did ‘mind, body and spirit work for her successful recovery’

×    much of healing ‘is the responsibility of the patient to work on the spiritual or ‘upper levels’ of oneself

×    her healing was supported by nanoparticles of gold and silver

Apparently, Honey said she ‘feels strongly that we [Lyme patients] can recover 100% if we choose to’.

Many in the Lyme community are concerned with Honey’s apparent orientation for healing from these complex diseases. Does she believe that persons suffering from Lyme disease, including chronic Lyme with serious debilitation and disability, choose to stay sick?  Does this mean that Honey believes that these patients, many who are impoverished by their illness, should pay $350 for a 90 minute session with Bleau? Or someone with Bleau’s special healing powers? Or will patients be encouraged to purchase her ‘novel IV nano-mineral solution’ to be cured of Lyme?

Please remove Kristen Honey immediately from the post of Vice Chair of the Tick-Borne Disease Working Group, thank you.

YOUR NAME

…………………………………………………………………………………………….

Footnotes

[1] https://www.linkedin.com/in/kristenhoney/

[2] source: LinkedIn, CV on https://www.slideshare.net/slideshow/embed_code/key/gPTaDnPp1hyR6N

[3] https://www.hhs.gov/ash/advisory-committees/tickbornedisease/about/21-century-cures-act/index.html

[4] http://honey2healing.org/

[5] http://honey2healing.org/book/

[6] Rachael Bleau’s website https://www.rachaelbleau.net/

[7] Clear Your Way to Freedom by Rachael Bleau MSC.D. Copyright 2014 by Balboa Press. Please note this book has a disclaimer, “the author of this book does not dispense medical advice or prescribe the use of any technique as a form of treatment for physical, emotional, or medical problems without the advice of a physician, either directly or indirectly. The intent of the author is only to offer information of a general nature to help you in your quest for emotional and spiritual well-being”

[8] See pages 39,40,59, 61, 62, 76, 81 https://books.google.com/books?id=1sAAAwAAQBAJ&printsec=frontcover&dq=editions:vAGjiTCFQpAC&hl=en&sa=X&ved=0ahUKEwiE68Cs-OHaAhXvmuAKHbCCC7oQ6AEIKTAA#v=onepage&q=Kristen&f=false

[9] Great White Brotherhood – https://www.summitlighthouse.org/great-white-brotherhood/

[10] Disclaimer from the blog of Better Health Guy: “Nothing in this text is intended to serve as medical advice. All medical decisions should be made only with the guidance of your own personal medical authority. This information was taken as notes during the conference and may not represent the exact statements of the speakers. Errors and/or omissions may be present. If you have any corrections to the content listed below, please Contact Me. [Better Health Guy]”

_______________

**Comment**

First, I’ll bet if you interviewed every single person on the Working Group about their beliefs, you’d hear 100 different answers.  Personally, I don’t care if someone “believes” the moon is made of cheese as long as they have the ability to weigh those “beliefs” and make productive decisions for really, really, sick people, despite personal preferences, beliefs, and experiences.

The only potential problem with Honey’s “beliefs” and personal experience is she may make the mistake of feeling her experience is the “right” one.  If there’s one thing I’ve learned on this journey to hell and back is that it hits everyone so differently and therefore requires different answers.  Long-term antibiotics DO work for some, and for some they do not.  To rule them out for everyone; however, would be foolish just due to the fact some continue to have symptoms.

What is super concerning is another conflict of interest.  Conflicts of interest got us into this mess and they keep rolling out like a barrel full of monkeys.  This HAS TO END!  Since Honey stands to make money on her patented “nano particle” treatment, she stands to gain by downplaying or eliminating long-term or IV antibiotics for Lyme/MSIDS.

If you have a conflict of interest, GET OFF THE WORKING GROUP.  Period.  If you stand to make money based on decisions the group makes – GET OFF THE GROUP.

 

Category:

Uncategorized

Latest on Electromagnetic Radiation

https://www.telegraph.co.uk/science/2018/05/17/electromagnetic-radiation-power-lines-phone-masts-poses-credible/

Electromagnetic radiation from power lines and phone masts poses ‘credible’ threat to wildlife, report finds

 

Electromagnetic radiation from power lines, wi-fi, phone masts and broadcast transmitters poses a ‘credible’ threat to wildlife, a new report suggests, as environmentalists warned the 5G roll out could cause greater harm.

An analysis of 97 studies by the EU-funded review body EKLIPSE concluded that radiation is a potential risk to insect and bird orientation and plant health.

However the charity Buglife warned that despite good evidence of the harms there was little research ongoing to assess the impact, or apply pollution limits.

The charity said ‘serious impacts on the environment could not be ruled out’ and called for 5G transmitters to be placed away from street lights, which attract insects, or areas where they could harm wildlife.

Matt Shardlow, CEO of Buglife said: “We apply limits to all types of pollution to protect the habitability of our environment, but as yet, even in Europe, the safe limits of electromagnetic radiation have not been determined, let alone applied.

“There is a credible risk that 5G could impact significantly on wildlife, and that placing transmitters on LED street lamps, which attract nocturnal insects such as moths increases exposure and thereby risk.

“Therefore we call for all 5G pilots to include detailed studies of their influence and impacts on wildlife, and for the results of those studies to be made public.”

As of March, 237 scientists have signed an appeal to the United Nations asking them to take the risks posed by electromagnetic radiation more seriously.

The EKLIPSE report found that the magnetic orientation of birds, mammals and invertebrates such as insects and spiders could be disrupted by electromagnetic radiation (EMR). It also found established that plant metabolism is also altered by EMR.

The authors of the review conclude that there is “an urgent need to strengthen the scientific basis of the knowledge on EMR and their potential impacts on wildlife.

“ In particular, there is a need to base future research on sound, high-quality, replicable experiments so that credible, transparent and easily accessible evidence can inform society and policy-makers to make decisions and frame their policies.”

_____________

Effects of Cell Phone Radiation Just Released by the NIH:

https://ntp.niehs.nih.gov/ntp/about_ntp/trpanel/2018/march/tr595peerdraft.pdf

https://www.linkedin.com/pulse/effects-cell-phone-radiation-just-released-national-institutes-cruz/   The rodents in this study received whole body radiation while in utero, during nursing, and for up to 2 years after weaning.  The rodents were pulsed for 10 minutes of radiation on, 10 minutes off, for 9 hours each day. They used 2G and 3G radiation, the same frequencies and modulations currently in use for texts and voice calls in the United States.

The study findings:

  • Tumors found in rodent’s who were exposed to whole body radio-frequency radiation included: malignant schwannoma of the heart, malignant gliomas of the brain, pituitary adenomas, and adrenal gland pheochromocytomas.
  • It didn’t take long… for example, after only 14 weeks, the researchers found that the right ventricles of the hearts of male rats was already starting to increase abnormally, developing cardiomyopathy.
  • After two years of high exposures to cell phone radiation, exposures were found to affected male rodents more than female rodents: increasing the incidence of malignant schwannoma in the hearts of male rates… while female rats did not have an increased risk of this cancerous tumor. Male rats also had abnormal changes in the prostate gland, liver, pancreas islet cells (the cells responsible for producing insulin) and granular tumors of the brain, and glial cell hyperplasia of the brain.  These changes were not seen in female rats.
  • Both male and female rats had abnormal heart growth (in the right side of the heart, called right ventricular cardiomyopathy.)
  • There were changes in body weight (lowered birth weight in babies born with radiation in utero exposure) as well as genetic damage in both male and female rodents.
  • There was an interesting side effect of the whole body radiation in that the male rats that were exposed to radiation had a longer life span on average than the non-exposed male rats. Life span did not change for the female rats.
  • These changes reflect tumors that have already been reported in humans after prolonged cell phone use, most notably the cancerous gliomas of the brain.

Category:

Activism, Adrenals, Uncategorized

Conflicts of Interest in Tick Borne Disease Working Group

https://www.linkedin.com/pulse/jenna-luch%C3%A9-thayer-may-16-2018-public-comment-disease-luche-thayer/

May 16, 2018. Jenna Luché-Thayer’s Three Minute Public Comment to Tick-Borne Disease Working Group

“As of yesterday, (May 15, 2018) this Working Group effort appears to have:

  • Violated FACA law by obstructing the public’s right to properly prepare for public meetings with access to materials used by federal employees.
  • Shifted to maintaining the status quo while possibly channeling federal funding to specific organizations and individuals.

Most Subcommittee recommendations that could help to immediately improve access to diagnosis and treatment options were removed in favor of ideas that will take much time and money to yield results, such as establishing the Centers for Excellence and the establishment of a new federal website even as the National Guidelines Clearinghouse is defunded.

Pathogenesis appears to restrict Lyme to Borrelia burgdorferi and skirt the many borrelia strains that cause Lyme-like illness and are found in the USA. This restrictive approach will not help to open access to diagnosis and treatment options.

The Working Group’s conflicts of interest information needs to be made available to the public.

For example, the Chair John Aucott’s 2015 filed patent for measuring CCL19 cytokines could be used in relation to the sequalae and complications from Lyme he listed in yesterday’s meeting [1]. Aucott could make money while this restrictive technology is possibly misused to channel which Lyme patients:

·      receive extended antimicrobials to reduce infection or

·      biologics that modify symptoms and suppress the immune function.

The Subcommittee for patient access to care and support veered off their scope of work to identify Lyme groups mostly affiliated and associated with Lyme Disease Association as service providers for the Lyme community.

Such organizations only address ‘a drop in the bucket of need’ related to this epidemic and I sincerely hope the focus on these particular organizations is not an attempt to steer tax dollars to support their activities, as that would be extremely unethical and have limited results.

All Subcommittee Reports were not available until the May 10, 2018 public meeting and there is no evidence the 1000+ public comments were reviewed for these Reports.

These and other practices have obstructed public preparation for a high-stakes Report for diseases that may disable, bankrupt, and kill.

Additional Concerns

1.  The Vice-Chair is a Senior Research Scholar from Stanford University on assignment to the Office of Management and Budget, and apparently not a federal officer [2].

As seven federal members are required by law [3], I ask she be replaced with a federal officer familiar with complicated and persistent Lyme and coinfections, including tick-borne diseases.

2.  The Chair Aucott terminated Dr. Enid Haller without cause and to date, has not put in writing the defamatory accusations he made in the presence of the Vice-Chair, former DFO [Designated Federal Officer], current DFO James Berger and Co-Chair Scott Cooper.

I ask the Chair be replaced with a medical professional who has a reputation for ethical treatment of Lyme patients and advocates.

3.  Some advocates on the Working Group and Subcommittees have tried to inhibit advocacy efforts regarding FACA transparency; this is disturbing, unacceptable and now on public record.

4. Why were two security men with Flak jackets needed?

5. And, how high does the body count have to be for you to do something?”

………………………………………………………………………………………………………………………….

[1] https://patents.google.com/patent/US20160305956

“In a specific embodiment, a method comprises the step of prescribing or administering a second course of antibiotic treatment to a patient who is determined to have an increased level of CCL19 as compared to a control after completing a first course of antibiotics for Lyme disease.”

[2] https://www.linkedin.com/in/kristenhoney/

[3] https://www.hhs.gov/ash/advisory-committees/tickbornedisease/about/21-century-cures-act/index.html

______________

**Comment from Allison Caruana, treasurer at the Mayday Project and Owner of Lyme Disease Awareness Flags””

Did you know that John Alcott has a patent on CCL9 (MRP2), a cytokine associated with inflammation properties of Lyme Disease, and is directly associated with the ability to develop co-resistance to macrolides? Besides tetracycline, macrolides are the only antibiotic thought to have some (not complete) impact on the control of Rickettsia, a quasi cross-kingdom bacteria/virus. Did you know that macrolides have antiviral properties that help reduce inflammation through an “unknown” mechanism? But wait a minute…Alcott has a patent on CCL9 (MRP2) for its anti-inflammatory properties!!!! Excuse me? What does Alcott really know? Don’t you think he should answer that question?

Category:

Uncategorized

Bartonella Neuroretinitis – Not Atypical

https://www.ncbi.nlm.nih.gov/m/pubmed/29713803/

Bartonella neuroretinitis : An atypical manifestation of cat scratch disease

Lapp N, et al. Ophthalmologe. 2018.

Abstract

Cat scratch disease (CSD) typically manifests as a febrile lymphadenopathy and is caused by a Bartonella henselae infection after contact with cats. This article describes the case of an atypical presentation of CSD in a 52-year-old patient with acute unilateral loss of vision and headache without fever or lymphadenopathy. Funduscopic examination showed an optic disc swelling and macular star exsudates, pathognomonic for infectious neuroretinitis. A Bartonella henselae infection was confirmed serologically. Systemic antibiotic combination therapy was initiated with doxycycline and rifampicin for 6 weeks resulting in good morphological and functional results. A Bartonella neuroretinitis should be considered in the differential diagnosis of patients with loss of vision and papilledema, even in the absence of fever or lymphadenopathy. Immediate serological testing and initiation of antibiotics are important for the outcome.

_____________

**Comment**

Again, researchers need to seriously QUIT using the words “atypical manifestation” regarding anything Lyme/MSIDS and that includes Bartonella.  There is so much unknown about all of this that it is premature to announce that anything is “atypical” at this point.

After typing in Opthalmic Manifestations & Bartonella in the search bar:  https://madisonarealymesupportgroup.com/2017/10/23/opthalmic-manifestations-of-bartonella-infection/  and another: https://madisonarealymesupportgroup.com/2017/07/21/bartonella-and-neuroretinitis/

NOT ATYPICAL…..

And, cats aren’t the only perp here.  Quit saying they are.  Many are claiming ticks transmit as well as numerous other arthropods.  According to some, Bartonella may very well be the most commonly carried and transmitted pathogen.

More on Bartonella:  https://madisonarealymesupportgroup.com/2016/01/03/bartonella-treatment/

https://madisonarealymesupportgroup.com/2018/05/07/fox-news-bartonella-is-the-new-lyme-disease/

https://madisonarealymesupportgroup.com/2018/05/09/rheumatological-presentation-of-bartonella-koehlerae-henselae-a-case-report-chiropractors-please-read/

 

 

 

 

Category:

Bartonella, Uncategorized

Some States Only Provide LD Estimates – Houston, We Have a Problem

http://www.wmur.com/article/despite-prevalence-of-lyme-disease-nh-provides-only-estimate-of-cases/20107070

Despite prevalence of Lyme disease, NH provides only estimate of cases

Officials say thousands of cases reported, but official statistics show smaller count

Amy Coveno   
News Anchor/Reporter
CONCORD, N.H. —Thousands of cases of Lyme disease are reported each year in New Hampshire, but the last complete set of data recorded in the state was five years ago.

Lyme disease is one of 60 diseases that are required by law to be reported to the Department of Health and Human Services. State officials said close to 3,000 cases are reported each year, but the current number is an estimate because an exact count hasn’t been made since 2013.

“Since 2014, we’ve had some challenges keeping up with the volume of reports we’ve been receiving,” said Beth Daly, chief of the Bureau of Infectious Disease Control.

Daly said all the funding for Lyme surveillance in the state comes from the Centers for Disease Control and Prevention. The federal agency provides a $77,000 grant.

“We’ve dedicated those funds to two part-time positions to help us collect this information from health care providers,” Daly said.

The bureau started estimating Lyme disease cases in 2014 because of staffing shortages and budget limitations, Daly said. There is no state funding provided to track cases of the disease.

“We rank 39th in the country relative to state support for the work of public health,” said Lisa Morris, director of the Division of Public Health Services.

State officials admitted that the statistics posted about New Hampshire on the CDC website are way off. The site lists 691 confirmed cases of the disease in 2016, but state officials told News 9 that they receive 2,700 reports of the disease each year, a statistic that Daly said has remained stable over the past five years.

Lyme disease reporting is mandated, but surveillance methods among the top 14 states vary considerably, officials said.

“It’s only reflecting the number of cases that we have had the capacity to investigate,” Daly said. “They will not print our estimated number.”

Naturopath Julia Greenspan, who says she specializes in Lyme disease at Greenhouse Naturopathic Medicine, said she is alarmed that state officials have been estimating the data.

“If we had a better understanding of the infection around the state or in New England, I think people would take it a lot more seriously,” she said.

New Hampshire isn’t alone. Vermont receives no state funding, but officials said they still investigate every report of Lyme disease, as does Maine. Massachusetts provides estimates, like New Hampshire.

For 18 years, David Hunter has facilitated Lyme support groups. He calls it a labor of love after his daughter’s high school career was waylaid by the disease. He said he’s also critical of the practice of estimating cases.

“If you take statistics down a peg, it just means awareness is down a peg,” he said.

But state officials argued that instead of handwringing over counting every case, resources might be better shifted to prevention and education.

As of February, the Bureau of Infectious Disease Control has hired two people to fill the vacancies for Lyme surveillance. Daly said she’s hopeful that in 2018, New Hampshire will once again have complete data instead of estimates.

______________

**Comment**

This right here, ladies and gentlemen, is part and parcel of the problem regarding Lyme/MSIDS.

I whole-heartedly concur with both the ND and the advocate in this article.  If states can’t show reasonably accurate numbers, and those numbers appear low, no one is going to take this epidemic seriously.  Numbers equate out to time and money.  Without accurate numbers, corresponding monies will NOT be allocated to this modern-day plague.
If your state only estimates cases, you need to write your state representatives today.  Time to change how all of this is being handled, and only We the People are going to do it.

Category:

Activism, Lyme, Uncategorized