Letter to IDSA President: Why Do Guidelines Omit Treating Disabled Lyme Patients, Why Do You Discourage Routine Testing, & Why Are There No References to Failed Treatment & Persistent Infection?

May 12, 2021

**Comment**

Tuttle brings up many valid questions you may want to consider if you are planning on writing HHS on how best to address Lyme disease.

  • It needs to be understood that this complex illness started out historically through the myopic lens of a rheumatologist and has never expanded to include the many and varied symptoms that are experienced in reality and demonstrated through research.
  • Conflict if interest riddled public health ‘authorities’ still have not admitted the potential of sexual transmission and they still state that congenital transmission is ‘rare’ despite the fact nobody’s counting.  
  • They also continue to ignore the importance of other pathogens that research has shown cause more severe illness for a longer duration of time, and that require different medications.
  • Research has also demonstrated the different forms of borrelia that mainstream medicine continues to ignore, that also require different medications.
  • There is a sordid back-story (in which they took out the most specific band for Lyme) on current CDC-2 tiered testing which tests for ONE strain of borrelia, which misses a majority of cases.  They aren’t even looking for or testing for other pathogens.
  • They falsely continue to state that 60-80% obtain the EM rash, when research shows it’s highly variable and between 0-80%.  Only 25% had the rash in the first ever patient group.  The CDC has received a formal complaint on this false statistic in 2019.  Crickets.
  • Since obtaining a positive test and having the EM rash are requirements to enter research studies, it’s obvious that a HUGE subset of patients are not being studied.  This has been going on for over 40 years and needs to change.
  • The CDC also falsely states that only 10-20% go on to suffer persistent symptoms.  This only includes patients who were diagnosed and treated early.  There is a larger group of 40-60% of patients that are diagnosed and treated late. When you combine the two groups, perhaps over 60% of infected patients are chronically infected and struggle with severe symptoms. This distinction is extremely important because CDC statistics downplay the significance of the problem. Also, research dollars are limited and typically go to issues affecting the most people.

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

Inquiry to IDSA President Barbara D. Alexander, MD

MAY 4, 2021 — 

Additional information to be shared with the public originating from the monthly NH Lyme Study Commission

Study Commission Website:
http://www.gencourt.state.nh.us/statstudcomm/details.aspx?id=1515&rbl=1&txtbillnumber=hb490

I do not expect a response to the inquiry below so feel free to send a personal note to Dr. Alexander to remind her to answer my three questions.

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “alexa011@mc.duke.edu” <alexa011@mc.duke.edu>
Cc:  All members of the NH Lyme Study Commission
Date: 05/02/2021 8:19 AM
Subject: Inquiry to IDSA President Barbara D. Alexander, MD

May 2, 2021

Infectious Diseases Society of America
4040 Wilson Boulevard Suite 300
Arlington, VA 22203
Attn: Barbara D. Alexander, MD, MHS, FIDSA, President

Dear Dr. Alexander,

As a member of NH Governor Chris Sununu’s Lyme Disease Study Commission, I am forwarding the following three highlighted questions that were brought up during last month’s Zoom meeting. I am hoping that you can answer these questions which came to light after State Epidemiologist, Dr. Ben Chan reviewed your IDSA Lyme Treatment Guideline.

Question #1 refers to Lyme patients in wheelchairs as there doesn’t seem to be a section in your guideline focused on treating the disabled Lyme patient population.

I would also like to call attention to a statement from Dr. Ying Zhang, professor at the Department of Molecular Microbiology and Immunology at the Johns Hopkins Bloomberg School of Public Health:

Standard antibiotic treatment for Lyme disease does not kill persistent Borrelia bacteria.
http://droopyyoupi.blogspot.com/2015/08/standart-antibiotic-treatment-for-lyme.html

Excerpt:

-What has tuberculosis and Borrelia burgdorferi in common? In the late stage of the disease occurs persistent (tolerant) bacteria, which essentially means that the bacteria lasts and lasts and lasts. They protect themselves against antibiotics and are difficult to treat.

– Both Borrelia burgdorferi and tuberculosis is relatively easy to cure in the early stages, even with the use of one antibiotic. In the late stage it is impossible to cure the disease with the same type of treatment in the acute phase, said Dr. Ying Zhang when he visited the year NorVect conference.
________________

Kindly hit “reply all” so all members of the NH Lyme Study Commission will see your response.
Respectfully submitted,
Carl Tuttle
Hudson, NH
 
Three highlighted questions that were brought up during last month’s Zoom meeting:

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: All Members of the NH Lyme Study Commission
Date: 04/28/2021 11:04 AM
Subject: April 23rd meeting minutes

Rep Marsh and Commission members,
For the record here is a copy of the questions I asked during the last Zoom meeting which should be summarized in the minutes.

Question #1 Stages of Lyme disease 
Stage 3: Months later; Arthritis (from the March 2th minutes)

I would like to call attention to the 43-page document I sent to all members prior to the start of this study commission. [1] On page two of that document under the topic “Severity of Lyme Disease” (cases that actually made headlines) there are references to Lyme patients in wheelchairs, along with Dr. Neil Spector requiring a heart transplant after his Lyme went untreated for four years.

Untreated strep throat can progress to rheumatic fever, causing irreversible heart damage. Untreated syphilis leads to progressive disability and dementia, and untreated HIV infection progresses to AIDS with significant disability and death. So what happens to a patient with Lyme disease who goes months, years, or decades before diagnosis because of a false-negative serological test result, missing bulls-eye rash, misdiagnosis etc., etc.?

Why isn’t the disabling stage of Lyme disease recognized? I have never seen a public Service Announcement informing the public that you could become horribly disabled or die from Lyme disease yet we have all this evidence nationwide that Lyme is destroying lives, ending careers while leaving its victim in financial ruin.

Question #2 IDSA Treatment Guidelines discourage routine testing for Lyme disease in patients who have been diagnosed with the chronic diseases of our time. 

On page 5 of that 43-page document I sent to the group there is a link to the 5min extended trailer for the documentary “Under our Skin” From the Lyme patient interviews;

I was misdiagnosed with:

-Chronic Fatigue Syndrome
-Lupus
-MS
-Fibromyalgia
-ALS

We also know that Kris Kristofferson was being treated for Alzheimer’s disease only to find out it was Lyme all along.

The 2020 IDSA Lyme treatment guidelines strongly recommend against “routine” testing for disease in patients with:

Typical amyotrophic lateral sclerosis (ALS),
Relapsing-remitting multiple sclerosis (MS),
Parkinson’s disease,
Dementia, or cognitive decline,
New-onset seizures,
Psychiatric illness, and
Children with developmental disorders.

Who in their right mind would not want to make sure that these patients are not suffering from an untreated Lyme infection; especially in a state with one of the highest rates of Lyme in the country?

Question #3 There are no references to failed treatment in the IDSA Guidelines so no acknowledgment of persistent infection. 

My letter to the editor published in the BMJ last June had a short list of failed treatment references; there are actually hundreds so why is the IDSA refusing to recognize this serious problem which is leaving hundreds of thousands if not millions worldwide in a debilitated state?

Letter to the editor of the BMJ:

Lyme borreliosis: diagnosis and management
https://www.bmj.com/content/369/bmj.m1041/rr-1

Carl Tuttle
Hudson, NH

Reference

1. 43-page document I sent to all members prior to the start of this study commission
https://www.dropbox.com/s/cfgrq6m1y645q3b/NH%20House%20Bill%20490%20Lyme%20Disease%20Commission%20Oct%203%202020.pdf?dl=0

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Give Your Comments to HHS on How Best to Address Lyme Disease

https://www.lymedisease.org/comments-hhs-lyme-disease/

Give your comments to HHS on how best to address Lyme disease

The Kay Hagan Tick Act, signed into law in 2019, called for the development of a national strategy to address vector-borne diseases, including Lyme and other tick-borne infections.

Since then, the Department of Health and Human Services (HHS) has been working to develop the plan. It includes such goals as improving surveillance, diagnosis, prevention, treatment, and research.

Now, HHS is seeking input from a variety of sources—including people affected by Lyme and other vector-borne diseases.

In a Request for Information (RFI) posted on the Federal Registry, HHS said that public comments must be received electronically no later than midnight Eastern Time on June 11.

Questions you can answer

It states:

This RFI seeks public input on strengthening and improving the nation’s response to vector-borne diseases in a number of areas. Responses may address one or more of the areas below:

  1. What do you recommend as the top priorities to address vector-borne diseases in the United States during the next five years? Why are these the most important priorities?
  2. What goals, objectives, and strategies would you propose for each of your top priority areas?
  3. Do you have recommendations on specific research or programmatic efforts to improve surveillance, diagnosis, prevention, and treatment of vector-borne diseases?
  4. Any additional topics you wish to provide input on.

Click here for more information about this RFI and how to submit comments.

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Abdominal Pain in Child with Lyme

https://danielcameronmd.com/lyme-disease-manifests-abdominal-pain-child/  Podcast Here

LYME DISEASE MANIFESTS AS ABDOMINAL PAIN IN A YOUNG CHILD

lyme-disease-abdominal-pain

Hello, and welcome to another Inside Lyme Podcast. I am your host Dr. Daniel Cameron. In this podcast, I will be discussing the case of a 9-year-old boy who presented with abdominal pain as his first symptom of Lyme disease and the subsequent onset of attention deficit and ataxia (or difficulty in walking).

By

I first read about this case by Savasta and colleagues in the Italian Journal of Pediatrics.1

There are a growing number of signs and symptoms of Lyme disease in children. Savista and colleagues describe the 9-year-old child as having a one-year history of “abdominal pain, progressive poor scholastic performance and gait disturbance.”

At age 8, the boy had been hospitalized for severe abdominal pain and underwent extensive testing. But results were negative. His abdominal pain remitted over the next two months.

One year later, the boy became ill again with new symptoms. “He experienced learning difficulties with attention deficit and irritability, in addition, he developed difficulty in walking,” wrote the authors.  “When he was admitted to our Department he presented with ataxic gait, difficulty in speaking and attention deficit.”

The child was diagnosed with abdominal neuroradiculopathy. “Although not confirmed by nerve conduction studies, the clinical characteristics of the pain, the exclusion of other causes, the diffuse spinal roots enhancement on MRI and the additional confirmation of peripheral neuropathy are highly suggestive for abdominal neuroradiculopathy as symptom of onset of the disease,” the authors wrote.

“We observed ataxic gait, learning difficulties with attention deficit and irritability, signs and symptoms reflecting bacterial involvement of central nervous system,” the authors wrote.

Diagnosis and Treatment

Additional laboratory and radiological findings confirmed the diagnosis of late Lyme disease.

The boy was treated with 3 grams of intravenous ceftriaxone for 3 weeks, followed by an additional 3-week course of oral amoxicillin.

The treatment was prolonged “considering the disseminated and long-lasting illness,” the authors wrote.

They explain that in hindsight, “Indeed, a thorough past medical history collection evidenced that the onset of abdominal pain started 2 weeks after a tick-bite episode occurred during a walk in the wood.”

Three months after treatment, the boy’s gait and scholastic performance had improved and resolved completely after one year. A repeat of his spinal tap showed marked improvements.

The authors concluded the abdominal pain was due to painful radiculopathy.  Painful radiculopathy leading to abdominal pain has previously been seen in adults but not children.

They suggest that abdominal radiculitis, “although extremely rare, could be the first manifestation of early Lyme neuroborreliosis in pediatric patients.”

The authors did not address whether the abdominal pain was associated with autonomic dysfunction.

This case report highlights the importance of considering “Lyme disease in the differential diagnosis of abdominal pain of unknown origin in children, especially in countries where the infection is endemic,” the authors wrote.

This podcast addresses the following questions:

  1. Have you seen abdominal pain from Lyme disease in your practice?
  2. What types of abdominal pain have you seen in your Lyme disease patients?
  3. What is abdominal neuroradiculopathy?
  4. Abdominal pain can have many causes and is quite common in children. So, at what point do you consider Lyme disease in the differential diagnosis of a child with abdominal pain?
  5. What is the importance of the tick bite?
  6. What is the significance of the ataxic gait, irritability and learning difficulties?
  7. Will Lyme disease patients tolerate antibiotics?

Editor’s note:  I have had Lyme disease patients with abdominal pain associated with autonomic dysfunction in my practice.  Thanks for listening to another Inside Lyme Podcast. You can read more about these cases in my show notes and on my website @DanielCameronMD.com. As always, it is your likes, comments, reviews, and shares that help spread the word about Lyme disease. Until next time on Inside Lyme.

Please remember that the advice given is general and not intended as specific advice as to any particular patient. If you require specific advice, then please seek that advice from an experienced professional.

Inside Lyme Podcast Series

This Inside Lyme case series will be discussed on my Facebook and made available on podcast and YouTube.  As always, it is your likes, comments, and shares that help spread the word about this series and our work. If you can, please leave a review on iTunes or wherever else you get your podcasts.

References:
  1. Savasta S, Fiorito I, Foiadelli T, et al. Abdominal pain as first manifestation of lyme neuroborreliosis in children, case report and review of literature. Ital J Pediatr. Nov 23 2020;46(1):172. doi:10.1186/s13052-020-00936-y

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Federal Gov’t Telling Facebook to Silence Those With Vaccine Safety Concerns Says Lawsuit & Center For Food Safety Sues NIH

May 11, 2021

https://www.activistpost.com/2021/05/federal-govt-telling-facebook-to-silence-those-with-vaccine-safety-concerns-says-lawsuit.html

Federal Gov’t Telling Facebook to Silence Those With Vaccine Safety Concerns Says Lawsuit

MAY 6, 2021

By Matt Agorist

It is no longer a random act — Facebook censorship has become so blatant and massive that they have indefinitely silenced the former president of the United States. Many pro-censorship advocates cheer this on because they dislike the voices silenced by Facebook. They attempt to justify the censorship with the claims that Facebook is a private company and can do what they want, a lawsuit filed against the social media giant says that is not the case.

A lawsuit filed by Robert F. Kennedy Jr. — the chairman of the non-profit group Children’s Health Defense (CHD) — claims Facebook conspires with the federal government to squelch speech which advocates for vaccine safety.

(See link for article)

______________________

**Comment**

Facebook attempted to have the case dismissed but so far the judge “took it under submission.”

While many have attempted to sue FB for censorship, their rebuttal has always been that FB is a private company and can do as it pleases.  What’s new about this lawsuit is the documented collusion between FB, the federal government, the FBI, the Atlantic Council or Digital Forensic Research Lab (government funded) and the CDC and “it’s proxy,” the WHO.

But that’s not all.

From government-funded censorship arms to the revolving door of high-level bureaucrats who fill the ranks of the oligopolies, the “private company” Facebook concept comes crashing down when taking a closer look. Private-sector firms do not need to be explicitly nationalized to further the establishment’s interests; it’s enough to install their alumni in top regulatory positions. Through these methods, Facebook can put on the façade of privatization while actually acting as deputies for the state but alleviating any constitutional checks in the process.

The author of the article states that the answer for this censorship lies not in regulation but in boycott and that it’s imperative to get off these spying, banning platforms who sell your personal information for profit, and whom are tearing society apart.

He further gives alternatives platforms.  You can check them out here.

Source: The Free Thought Project

Matt Agorist is an honorably discharged veteran of the USMC and former intelligence operator directly tasked by the NSA. This prior experience gives him unique insight into the world of government corruption and the American police state. Agorist has been an independent journalist for over a decade and has been featured on mainstream networks around the world. Agorist is also the Editor at Large at the Free Thought Project. Follow @MattAgorist on Twitter, Steemit, and now on Minds.

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https://www.centerforfoodsafety.org/press-releases/6350/center-for-food-safety-sues-nih-over-unlawfully-keeping-secret-federal-funding-of-research-creating-new-more-virulent-pandemic-viruses

Center for Food Safety Sues NIH Over Unlawfully Keeping Secret Federal Funding of Research Creating New More Virulent Pandemic Viruses

NIH Failed to Promptly Release Documents Concerning “Gain of Function/Gain of Threat” Research on Influenza, MERS, SARS, and COVID

MAY 04, 2021

SAN FRANCISCO–Last week, Center for Food Safety (CFS) filed a Freedom of Information Act (FOIA) lawsuit against the National Institutes of Health (NIH), an agency with the Department of Health and Human Services (HHS). CFS is suing the agency over its failure to release government documents related to the approval and issuance of NIH contracts and grants that fund research projects involving controversial gain of function/gain of threat studies with dangerous, so-called “enhanced potential pandemic pathogens.”

“The NIH’s refusal to make public the research it is funding to enhance the transmissibility, infectiousness, and lethality of potential pandemic viruses is grossly irresponsible,” said Andrew Kimbrell, executive director of Center for Food Safety. “We are litigating to get that information because transparency and public knowledge about these highly hazardous experiments could be an important step in avoiding the next pandemic.“

(See link for article)

Important excerpt:

NIH’s unlawful withholding of public records undermines FOIA’s basic purpose of government transparency. CFS has a history of suing the federal government to compel agencies to be compliant with FOIA. CFS’s FOIA program is committed to upholding the principles embodied in FOIA, such as maintaining an open and transparent government.

_____________________

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Bill Gates, China, 23andMe, And Your DNA

The purpose of this post is 3-fold:

  • Everyone should understand this for privacy reasons.  Medical care should be personal, confidential, and protected.
  • Lyme/MSIDS patients in particular often get DNA testing to discover if they have the MTHFR gene or other genes that may inhibit proper detoxification as well as information on their ability to handle certain medications.
  • To reveal, yet again, the importance of understanding the many conflicts of interest and the tangled web of connections that best exemplify the expression, “Things are not as they seem.”  These conflicts of interest/connections drive public health decisions which in turn affect all of us.

https://www.thelastamericanvagabond.com/bill-gates-china-23me-and-your-dna/

Gates

Bill Gates, China, 23andMe, And Your DNA

Posted on Author
Derrick Broze
Is there a connection between China, Bill Gates, YouTube, and DNA collection?

Recent reports reveal that a Chinese company with connections to the Gates Foundation is involved in COVID-19 testing and poses a potential threat to American privacy, particularly the medical and health data of those who have been tested for COVID-19.

In late January, CBS’ 60 Minutes reported:

“60 Minutes has learned Chinese company BGI Group, the largest biotech firm in the world, offered to build COVID labs in at least six states, and U.S. intelligence officials issued warnings not to share health data with BGI. 

The largest biotech firm in the world wasted no time in offering to build and run COVID testing labs in Washington, contacting its governor right after the first major COVID outbreak in the U.S. occurred there. The Chinese company, the BGI Group, made the same offer to at least five other states, including New York and California, 60 Minutes has learned. This, along with other COVID testing offers by BGI, so worried Bill Evanina, then the country’s top counterintelligence officer, that he authorized a rare public warning.”

“Foreign powers can collect, store and exploit biometric information from COVID tests” declared the notice. Evanina believes the Chinese are trying to collect Americans’ DNA to win a race to control the world’s biodata.”  (See link for article)

________________________

**Comment**

  • This information could be used to monopolize drugs and treatments.
  • Reuters reported in January that more than 40 publicly available documents and research papers show BGI’s regular partnering with the People’s Liberation Army (PLA). They share a dozen patents for DNA tests.  A 2015 patent is for a “low-cost kit to detect respiratory pathogens, including SARS (Sever Respiratory Syndrome) and coronaviruses.  
  • BGI’s chief infectious disease expert is listed as an inventor on the patent while also being one of the 1st scientists to have sequenced COVID-19 samples from a Wuhan military hospital. Please remember; however, that China’s chief epidemiologist states the virus was NOT isolated.
  • Natalie Winter of National Pulse uncovered documentation of a relationship between the Bill and Melinda Gates Foundation and BGI going back nearly a decade, with the Gates Foundation funding BGI projects relating to genome sequencing alongside Chinese Communist Party bodies such as the Ministry of Science and Technology and Academy of Agricultural Sciences.  Dr. Tadataka Yamada, former president of the Bill & Melinda Gates Foundation’s global health program, serves as the Chairman of BGI’s Scientific Advisory Board.
  • BGI, worth a market value of around $9 million and known for creating a cloned pig, has sold millions of their COVID-19 test kits around the world.

The article then switches to dangers posed by genealogy companies and that millions have voluntarily submitted their DNA for ancestry and health information.

A former counterintelligence officer told 60 Minutes that Chinese companies are investing in U.S. biotech companies which gives them access to health data. This officer ominously states that this genetic material represents “your past and your future as well as your children’s future.”

China is far from alone and most governments will seek to mine DNA information, which includes the U.S. government, military, as well as private companies.

The article then states 23andMe was discussed on 60 Minutes and that its CEO states the company plans to use DNA information to develop drugs.  The company announced in February it would become a publicly traded company with help from billionaire Richard Branson.

The article connects a spider-web which includes Branson, Jeffrey Epstein, Bill Gates and the BGI Group.  Another little known web includes the CEO of 23andMe, her sister who is CEO of Youtube, and her former husband – one of the founders of Google (which owns Youtube) and president of Alphabet Inc. until 2019.

These webs must be understood due to severe conflicts of interest to understand the wide censorship by Youtube labeling anything that doesn’t fit the COVID-19 narrative as “misinformation.” 

___________________

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