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Tick Talk: A Conversation About Lyme – Dr. Neil Spector

Tick Talk: A Conversation About Lyme

Published on Apr 14, 2019

PA still holds the crown for highest number of CDC reported cases of Lyme Disease making our state home to thousands of sick people. @drneilspector, Duke University Oncologist, chats with @Chick2Chick about his own Lyme story and how cancer research is providing hope for Lyme diagnostics and therapies! You can also listen to this as a podcast at your convenience through your favorite online podcast directory – iTunes, Stitcher, Spotify, TuneIn, Podbean or Google Play.
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For more:
Dr. Spector suffered from misdiagnosed Lyme disease for many years, and during that time, his heart was affected. He was near death and only a heart transplant could save his life. He chronicled the experience in his riveting memoir, Gone in A Heartbeat: A Physician’s Search for True Healing.  Since then, Dr. Spector has become a unique advocate for Lyme patients. He thoroughly understands the patient’s viewpoint, including what it’s like to know that something is seriously wrong with your body and yet have doctors dismiss your symptoms.

 

 

 

GLA Chief Scientific Officer’s Response to NIH on Tick-borne Disease Strategic Plan

https://globallymealliance.org/request-information-input-nih-tick-borne-diseases-strategic-plan/?

tick-borne diseases

BELOW IS A LETTER FROM GLOBAL LYME ALLIANCE’S CHIEF SCIENTIFIC OFFICER IN RESPONSE TO THE NIH’S REQUEST FOR INFORMATION TO THEIR TICK-BORNE DISEASES STRATEGIC PLAN

As Chief Scientific Officer of GLA, I herewith respond to the solicitation for feedback to the National Institutes of Health Tick-borne Diseases Strategic Plan, which was developed by the Tick-Borne Disease Working Group, a Health & Human Services advisory committee established by Congress in its 21st Century Cures Act. While the plan includes important topics on which research efforts should focus, our position is that it neglects several urgent areas that are of equal or higher importance.

Deficiencies in the current Strategic Plan include:

  1. The lack of any mention under the heading “Basic Research of the need to better understand mechanisms of bacterial persistence both in reservoir species and in the face of exposure to antibiotics and the implications for treatment failure and persistent infection/symptomatology.
  2. The lack of mention under the heading “Diagnosis and Detection” of the need to supplement indirect diagnostic tests, that rely upon the presence of antibodies, with direct tests that detect the presence of pathogen-specific protein antigens or nucleic acid. Additionally, the testing paradigm needs to shift towards multi-pathogen (bacterial, viral, etc.) rather than solely Lyme disease diagnoses.
  3. The lack of mention under the heading “Therapeutics” of the need to develop novel treatment strategies for those suffering from multiple tick-borne and/or opportunistic infections. Additionally, there is a need to explore non-traditional treatment modalities to care for patients continuing to suffer from persistent infection/symptomatology due to initial antibiotic treatment failure.

The list also underemphasizes (1) the ecology and management of ticks; (2) ecological interactions between ticks, hosts, and pathogens; and (3) environmental drivers of tick emergence, spread, and changing risk. Specifically, the plan lacks:

  1. Mention of national surveillance of ticks and tick-borne pathogens that would provide real-world representations of exposure risk in space and time;
  2. Any mention of finding vulnerabilities in the tick/host/pathogen life cycle and of the importance of seeking the means of exploiting such vulnerabilities to control exposure;
  3. A focus on identifying and ameliorating anthropogenic disturbances (land use changes, climate change, habitat degradation, etc.) that exacerbate tick-borne risk;
  4. Recognition of the importance of understanding how both native and non-native ticks (e.g., black-legged ticks, lone star ticks, long-horned ticks, etc.) become invasive, rapidly expand beyond their historic geographic ranges, and potentially share hosts and pathogens; and
  5. A focus on novel and existing methods to reduce tick populations.

It is our institutional view that any set of research priorities on tick-borne diseases in the United States must address these essential issues. We hope that by pointing out these omissions you will be allowed to redress their absence in a final draft of the NIH’s Tick-borne Diseases Strategic Plan.

Respectfully,

Timothy J Sellati

 

Timothy J. Sellati, Ph.D.
Chief Scientific Officer
Global Lyme Alliance

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**Comment**

It saddens me that still after over 40 years, the basics need to be pointed out to the people running the show.  The issues delineated in this letter are so basic a kindergartner could explain them, yet authorities treat this as a one pathogen illness using testing that’s like throwing sand into the ocean.

My only concern with #3 in the last series is the mention of “climate change” when independent Canadian tick researcher, John Scott, has completely blown that “theory” out of the water showing ticks to be very ecoadaptive and able to survive harsh conditions by merely crawling under leaf litter or snow:   https://madisonarealymesupportgroup.com/2018/08/13/study-shows-lyme-not-propelled-by-climate-change/

Nothing has resulted from ANY data on the climate in helping very ill patients.

Recently advocate Carl Tuttle delineated 10 ways on how to maintain the illusion that the Lyme/MSIDS pandemic is under control:  https://madisonarealymesupportgroup.com/2019/04/19/how-to-maintain-the-illusion-the-lyme-misds-pandemic-is-under-control/

See link for references and entire article.  List below developed article:

1. Produce a two tier antibody testing algorithm where first line screening tests (Elisa) fail to detect 60% of infections. Those patients who do test positive will be allowed the second more sensitive test (Western blot) but design the test with strict criteria (Case definition) so as to rule out 90% keeping infection numbers artificially low.

2. Fund only those studies through institutions with researchers that have a bias against persistent infection.

3. Maintain a belief that all stages of infection, acute through late stage are easily cured with a standard two week treatment guideline and turn the disease into a syndrome when patients complain of persistent debilitating symptoms after unsuccessful treatment.

4. If a culture test should be developed which is the gold standard for many bacterial infections do not recognize this test and insist it is not government approved.

5. Create a map depicting limited territories were the infection is present.Use an existing institution with a bias against persistent infection to manage the data.

6. Define the disease exclusively as a zoonotic illness and disregard congenital and gestational transfer cases or transfer between sexually active couples.

7. No need to screen the blood supply for this pathogen.

8. Ignore Primate studies proving persistent infection.

9. Create a foundation to promote the disinformation campaign and staff the foundation with the same researchers with a bias against persistent infection.

10. Create a Working Group to talk about the problem for another decade (submitting reports every two years) without upgrading the threat to Highest Alert even though infection rates may exceed five times the AIDS epidemic or become twice as prevalent as breast cancer.

 

 

 

 

 

 

 

 


Lab Acquired Infections: Lyme

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24414377?cs_tk=AvrO18-

LABORATORY-ACQUIRED INFECTIONS: Borrelia burgdorferi

APR 11, 2019 — 

Please see the correspondence below identifying deaths from LABORATORY-ACQUIRED Borrelia burgdorferi in 1976 before Lyme was formally identified.

——– Original Message ———-

From: CARL TUTTLE <runagain@comcast.net>
To: brett.giroir@hhs.gov, tickbornedisease@hhs.gov
Cc: (96 Undisclosed recipients)Date: April 11, 2019 at 10:43 AM

Subject: The spirochete responsible for Lyme disease was not formally identified until 1982 by Willy Burgdorfer

April 11, 2019

U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201
Attn: ADM Brett P. Giroir, M.D., Assistant Secretary for Health

Dr. Giroir,

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

Excerpt:

SECTION I – INFECTIOUS AGENT

NAME: Borrelia burgdorferi

Date prepared: October 11, 1997 Prepared by- Canadian Office of Biosafety

Information edited by the Colorado State University Office of Biosafety; June 16, 1998.

From section VI:

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

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Discussion…..

The spirochete responsible for Lyme disease was not formally identified until 1982 by Willy Burgdorfer so how did laboratory personnel become infected (and with two reported deaths) prior to 1982?

Notice that “modes of transmission” identified are other than vector borne.
Were these infections acquired at Pathogen Detection Laboratories or bio-warfare facilities?

What is most disturbing here is a reported death rate of 4% for this group. The CDC recently estimated an annual 329,000 Lyme disease cases occur yearly in the U.S. and a 4% death rate would equate to 13,160 deaths annually.

Reference:

How many people get Lyme disease?
https://www.cdc.gov/lyme/stats/humancases.html

“In this study, researchers estimated that 329,000 (range 296,000–376,000) cases of Lyme disease occur annually in the United States.”

How prevalent is death from complications of Lyme disease if no one is looking for the pathogen at the time of death? Wouldn’t it make sense to screen still births, the hearts from cardiac deaths or the brains from patients who pass from Alzheimer’s disease for Borrelia infections?

If no one is looking then no one is counting.

For example: Take a look at the Microbiology Laboratory page for Brigham and Woman’s Hospital which is located in one of the highest Lyme endemic regions in America. Do you see any mention of testing for the causative agent of Lyme disease; Borrelia burgdorferi?

Brigham and Woman’s Hospital Microbiology Laboratory
https://www.brighamandwomens.org/pathology/clinical-pathology/microbiology-laboratory

It’s as if this disease is of no concern for the medical community and that needs to change Dr. Giroir as patient testimony continues to describe a disease that is destroying lives, ending careers while leaving its victim in financial ruin.

Carl Tuttle
Lyme Endemic Hudson, NH

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**Comment**

This 2005 video with transcript of Dr. Lida Mattman states Bb transmission can happen in numerous ways – not just by a tick:  https://madisonarealymesupportgroup.com/2019/04/02/transmission-of-lyme-disease-lida-mattman-phd/

Excerpt:

We know now it’s in tears and people wipe their eyes and then you shake hands with them. Or we don’t laugh so hard about the physician we had in the hospital who wouldn’t touch the doorknobs in the hospital without taking his white coat and handling the doorknob through a coat. Maybe he wasn’t so insane after all.

So we think this is spread by what is called fomites (an inanimate objector substance that is capable of transmitting infectious organisms fromone individual to another) which is the pencil in the bag as you pick up a pen to write a check or anything you handle. So it’s in urine and in tears and it’s also spread by mosquitoes and who hasn’t had a mosquito bite?  We’ve tested the mosquitoes in Michigan and sure enough they can carry the Lyme spirochete.  

Together with her collegue JoAnne Whittacker, Mattman did groundbreaking work on Lyme testing. Her Gold Standard Culture Method has disappeared thanks to the concerted suppression on microscopy. In 2004 she already claimed that she could not find any uninfected blood in the USA anymore.

Mattman isolated living Borrelia spirochetes in mosquitoes, fleas, mites, semen, urine, blood, plasma and Cerebral Spinal Fluid. She discovered that this bacteria is dangerous because it can survive and spread without cell wall (L shape). Because L-forms do not possess cell wall, they are resistant to antibiotics that act upon the cell wall.

Others have found various ways Bb is transmitted as well:

THE CDC/IDSA/NIH STILL HAVEN’T RECEIVED THE MEMO or they are ignoring it

 

 

 

CDC to Start Monitoring Tick Distribution & Their Diseases

https://www.webmd.com/arthritis/news/20190327/cdc-to-start-tracking-ticks-as-diseases-rise  See link for full article which includes a slide show and prevention tips

CDC to start monitoring tick distribution and their diseases

 

Save the Date – May is Lyme Awareness Month: Free Showing of ‘Under Our Skin,’ Best Primer on Lyme Disease

Mark Jason Lim

Please spread the word.

I will be bringing posters for you to take & distribute at the next Lyme support meeting on Saturday April 13. Details on the meeting here:  https://madisonarealymesupportgroup.com/2019/03/11/april-2019-lyme-support-meeting/. A person from group has agreed to share practical tips on diet/nutrition. Bring a notebook and pen to take notes and ask questions.

Our last meeting until fall will be the May 4 viewing of “Under Our Skin” with a Q & A following.  Please bring family, friends, co-workers, anyone who needs to learn about this 21st century plague that is a pandemic.