Archive for the ‘Activism’ Category

CDC Agrees to Add Disclaimer to Lyme Disease Case Definition

https://globallymealliance.org/news/cdc-agrees-to-add-disclaimer-to-lyme-disease-case-definition/?

lyme disease case definition

Washington, DC – WEBWIRE – Monday, July 22, 2019

The Centers for Disease Control and Prevention (CDC) has agreed to add a disclaimer to the surveillance case definition for Lyme disease that it is

not intended to be used by healthcare providers for making a clinical diagnosis or determining how to meet an individual patient’s health needs.”

According to a July 16 letter from Lyle Peterson, MD, Director of the CDC Division of Vector-Borne Diseases, this change is being implemented on “all individual case definition pages, including the 2017 Lyme disease case definition page.”

This action was taken following an Information Quality Request for Correction complaint filed by the Patient Centered Care Advocacy Group on May 20, 2019.

According to the complaint, many healthcare providers incorrectly rely on the case definition to interpret results of the two-tier test, resulting in large numbers of patients who are misdiagnosed and denied medically necessary treatment and insurance coverage. This situation worsens the Lyme epidemic and increases the financial impact on our country in terms of lost productivity, disability, and increased medical expenses.

The CDC disclaimer states:

“A surveillance case definition is a set of uniform criteria used to define a disease for public health surveillance. Surveillance case definitions enable public health officials to classify and count cases consistently across reporting jurisdictions. Surveillance case definitions are not intended to be used by healthcare providers for making a clinical diagnosis or determining how to meet an individual patient’s health needs.”

According to the case definition for Lyme disease, most patients must either have an erythema migrans rash (EM, also known as a bull’s eye rash) or test positive on a two-tier blood test according to a narrow threshold. Yet many patients never get a rash, and a systematic meta-analysis of published data shows the mean sensitivity of two-tier test to be only 35.4% in the acute stage and 64.5% in the convalescent stage, with an overall sensitivity of 59.5%. The unreliability of the two-tier test is compounded by widespread misconception by healthcare providers and insurers that patients must test positive according to the surveillance criteria to confirm they have a legitimate case of Lyme disease.

“The disclaimer is a step in the right direction,” said Bruce Fries, President of the Patient Centered Care Advocacy Group, “but a lot more needs to be done to educate healthcare providers that the two-tier test is unreliable and the case definition should not be used for diagnosis. CDC has been encouraged by Congress as far back as 2002 to aggressively pursue and correct the misuse of the definition. Unfortunately, however, little was done and the case definition continues to be misused.”

Following are links to the complaint and CDC’s response.

Information Quality Request for Correction
www.lymepatientadvocacy.org/Documents/CDCInfoRequestforCorrection-05-20-2019.pdf

CDC Response
www.lymepatientadvocacy.org/Documents/CDCResponse-071619-CaseDefinition.pdf

_____________________

For more: https://madisonarealymesupportgroup.com/2019/06/27/idsa-aan-acr-2109-draft-lyme-guidelines-public-comments-allowed-until-aug-10-2019/

https://madisonarealymesupportgroup.com/2019/07/09/idsa-lyme-disease-treatment-management-business-as-usual-leaves-those-with-persisting-symptoms-to-suffer-die/

https://madisonarealymesupportgroup.com/2019/07/22/idsas-insincere-request-for-guidelines-feedback/

https://madisonarealymesupportgroup.com/2017/08/19/dr-liegner-guidelines-used-by-managed-care-causing-lyme-deaths/

https://madisonarealymesupportgroup.com/2017/06/29/british-lord-says-cdcidsa-lyme-guidelines-not-fit-for-purpose/

Category:

Activism, Lyme, Uncategorized

Lyme Disease: Medical Myopia & the Hidden Global Pandemic

Lyme Disease: Medical Myopia & The Hidden Global Pandemic

A Patient’s Guide to Navigating the Labyrinth of Diagnosis and Treatment

Coming out on August 30, 2019

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What if, at this very moment, hundreds of thousands of people were unaware that they were living in midst of an epidemic so large that it dwarfs the AIDS epidemic by sheer numbers in North America?

What if this epidemic cut across all populations: women and men, children and adults, the infirm and the fit, the very poor and the very rich?

And what if many of our best doctors in cities like New York, London, Paris, Dublin, Sydney and San Francisco were unaware of this very same problem?

This epidemic is upon us. It lurks in the most seductive of locations outside our cities – sought after vacation places frequented by urban dwellers. These are the favorite getaway spots for the often millions of people who work in our city centers, many of whom are unaware that they are at risk of infection from this insidious microbe.

The epidemic in question is a tick-borne disease, namely the spirochete bacterium Borrelia burdorferi, or Lyme disease, as it is more commonly known. Along with a number of other co-infection pathogens, including deadly viruses, this bacterium has become the scourge of the Northern Hemisphere and is now spreading into Asia and even Australia.

In this book, Dr. Bernard Raxlen attempts to answer many of those questions through the perspectives of patients and physicians from around the world, exploring the reasons for the medical myopia that blocks accurate diagnosis and treatment of tick-borne disease. He draws on his thirty years in the field and more than forty thousand clinical hours listening to and treating TBD patients and also invites other expert physicians in TBD from around the world to share their experiences and expertise. His recovered former patient, co-collaborator and Lyme advocate, Allie Cashel, author of Suffering the Silence: Chronic Lyme Disease in an Age of Denial, contributes a section of the book, illuminating life after TBD and the difficulties encountered in the post-Lyme world.

Also includes contributions from international authorities Dr. Laura Alonso Canal (Spain), Dr. Jennifer Armstrong (Canada), Michael Cook (UK), Doug Fearn (US), Dr. John Lambert (Ireland), Jenna Luché-Thayer (United Nations), Dr. Mualla McManus (Australia), Zhaneta Misho (Germany), Dr. Omar Morales (Mexico), Dr. Christian Perrone (France), Dr. Armin Schwarzbach (Germany), and Dr. Leo Shea (US); with illustrations by Rolo Ledesma.

Coming out August 30, 2019.  To preorder:  https://www.amazon.com/Lyme-Disease-Medical-Myopia-Epidemic/dp/1781611300

__________________

For a great paper titled “Double Rejection of the TBD Patient With Psychiatric Symptoms,” written by Dr. Raxlen: Raxlen’s paper on TBD’s

Favorite quote:

An untreated or partially treated Lyme patient is reminiscent of a disoriented train traveler in a Kafka-like scenario. The traveler wishes to board a train on the East Coast with the intention of reaching the West Coast. However, once arrived at the train station, the traveler can’t find the “right boarding track.” The information given to him concerning “schedules and time” is hopelessly “outdated” and inaccurate. In addition, the “information booth” official continues to direct him to the wrong gate. The conductor on the platform denies the existence of such a train ever traveling to the West Coast. The traveler, hopelessly confused, finally boards the correct train that appears to head to the West Coast. Halfway through the journey, he is told that his destination has been reached. He is instructed to get off the train. Little wonder, the “traveler” is disoriented, feels crazy, and begins to doubt the reality of his/her own senses. After all, if the supposed successful course of treatment does not improve, the patient’s symptoms are no better off at the end than he was at the beginning. – Dr. Raxlen

Category:

Activism, Lyme

IDSA’s Insincere Request For Guidelines Feedback

https://www.lymedisease.org/idsa-insincere-request/

19 JUL 2019
idsa lyme guidelines
By Dorothy Kupcha Leland  Touched by Lyme

Last month, the IDSA released a long-awaited draft of its latest Lyme treatment guidelines. The accompanying announcement stated: “We are looking for feedback from not only physicians and healthcare professionals, but also individuals affected by Lyme disease, such as patients, care givers, patient organization members, advocates, and researchers.”

Maybe you thought you’d print off the 100-page report and curl up on the couch to read it? Ain’t gonna happen.
How about downloading a PDF and reading it on your Kindle? Heck no.

Why not, you ask? Because the IDSA has purposely made it impossible for anybody to make a copy of either the guidelines or the 200-page list of accompanying resources.

The only way to read any of it is to go to the IDSA website and view it in real time on your screen.

Makes you wonder how serious that request for public feedback actually is, doesn’t it? This cumbersome process makes it difficult for anybody to read such long documents—whether you are a patient, a busy doctor, or a journalist interested in the story.

Wait. We’re not done yet. After you’ve slogged through all that just to read the darn thing, there’s another burdensome procedure for making comments.

Here’s how the IDSA website explains it:

In this form, you are given 20 opportunities to enter your comments on the guideline. Please note that you will need to complete your review in one sitting as your work in progress cannot be saved. Once you hit the “Save and Next” button at the end, your responses will be recorded and saved. If at the end you have additional comments, please click “Enter Additional Comments” and complete the survey again.

For each comment, you must select which section of the guideline your comment relates to:

·       General comments on entire draft

·       Introduction & methods

·       Tick bites prevention and prophylaxis of Lyme disease

·       Early localized Lyme disease (erythema migrans)

·       Neurologic Lyme disease

·       Lyme carditis

·       Lyme arthritis

·       Prolonged symptoms following treatment of Lyme disease

·       Cutaneous manifestations of Eurasian Lyme disease

·       Lyme disease coinfections

·       Supplement Materials

For each comment, you must be specific (section, page number, line and/or table number, comment).

Any questions marked with an asterisk (*) require an answer in order to progress through the comment form.

You must click “Save and Next” at the bottom of each page or your responses will not be saved.

Complicated enough for you?

LymeDisease.org is currently going over the draft guidelines with a fine-tooth comb and will have comments ready soon. Stay tuned.

Aside from the content of the document itself—which, spoiler alert! is plenty disturbing—the process by which the IDSA arrived at this draft is highly problematic.

Why the guidelines matter

For those who may be new to this party, some background:

The 2006 IDSA Lyme guidelines have long been a point of contention. They rigidly define what is “allowed” to be diagnosed as Lyme disease and limit permissible treatment to a short course of antibiotics. Thus, they deny treatment to the unlucky many who don’t fall within those narrow parameters.

Furthermore, insurance companies often use the guidelines to deny payment for Lyme treatment, and medical boards use them to revoke licenses of physicians who don’t follow them. Currently, the guidelines are also the centerpiece of a federal lawsuit. It charges that the document’s authors and eight insurance companies conspired to deny medical care to Lyme disease patients.

In 2016, the IDSA announced that it would re-evaluate and update the Lyme guidelines. At the time, the group also announced with much fanfare that they had named a “patient representative” on the guidelines panel. When our organization spoke to her, the woman in question admitted that she had no experience with Lyme disease whatsoever!

After the Lyme community protested loudly, the IDSA changed her designation from “patient representative” to “consumer representative.” They also said they would add three “patients” to the panel as well. But “to protect their privacy,” the IDSA refused to name the people who were supposedly there to “represent” us.

So basically, three people we’ve never heard of—and never will hear of—supposedly spoke on behalf of the Lyme community throughout the guidelines process. Are you feeling “represented” yet?

Click here for the draft guidelines.

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For more:  https://madisonarealymesupportgroup.com/2019/07/09/idsa-lyme-disease-treatment-management-business-as-usual-leaves-those-with-persisting-symptoms-to-suffer-die/

https://madisonarealymesupportgroup.com/2019/06/27/idsa-aan-acr-2109-draft-lyme-guidelines-public-comments-allowed-until-aug-10-2019/

https://madisonarealymesupportgroup.com/2017/06/29/british-lord-says-cdcidsa-lyme-guidelines-not-fit-for-purpose/

https://madisonarealymesupportgroup.com/2017/08/19/dr-liegner-guidelines-used-by-managed-care-causing-lyme-deaths/

 

Category:

Activism, Lyme

Did Pentagon Turn Ticks into Bioweapons That Spread Lyme Disease? N.J. Congressman Wants Answers

Did Pentagon turn ticks into bioweapons that spread Lyme Disease? N.J. congressman wants answers.

Rep. Chris Smith speaks in Middletown at a 9/11 memorial ceremony. ( Tom Haydon | NJ Advance Media for NJ.com)

Tom Haydon | NJ Advance Media

Rep. Chris Smith speaks in Middletown at a 9/11 memorial ceremony. ( Tom Haydon | NJ Advance Media for NJ.com)

By Jonathan D. Salant | NJ Advance Media for NJ.com

WASHINGTON

It sounds like the plot for a science fiction movie: A government agency decides to use ticks and other insects to spread disease and kill its enemies, only the ticks got out and infected the country’s residents itself.

New Jersey Rep. Chris Smith says that may not be too far-fetched.

He’s won approval from the House to have the Defense Department’s inspector general investigate whether the Pentagon actually looked at using ticks stuffed with pathogens as bioweapons during the height of the Cold War beginning in the 1950s.

He said several books and articles pinned the blame on the Pentagon, and perhaps some of the ticks and insects got out and helped to spread illnesses, most notably Lyme disease.

“If this isn’t true, let’s put it to rest,” said Smith, R-4th Dist. “For the sake of public health we should demand these answers.”

false

Lyme disease cases dropped last year in N.J., except in these 3 counties

The state saw a 22.3% decrease in confirmed or probable cases of the disease.

The provision is part of the National Defense Authorization Act, which sets defense policy for the 12 months beginning Oct. 1. That’s the same bill that includes Pentagon projects at Joint Base McGuire-Dix-Lakehurst and the Picatinny Arsenal, as well as prevents President Donald Trump from launching an attack on Iran without first receiving congressional approval.

House Democrats allowed Smith to bring up an amendment to begin the study, and then joined with Republicans in unanimously adding it to the legislation.

“With Lyme disease and other tick-borne diseases exploding in the United States — with an estimated 300,000 to 437,000 new cases diagnosed each year and 10-20 percent of all patients suffering from chronic Lyme disease — Americans have a right to know whether any of this is true,” Smith said. “And have these experiments caused Lyme disease and other tick-borne disease to mutate and to spread?”

Since a similar provision is not in the Senate version of the bill, it will be up to congressional negotiators to make sure it makes the final defense legislation. Smith said he’s talking to Senate leaders to gain their ascent.

The Lyme Disease Association is pushing senators to agree to the study.

“We know that the government was doing other kinds of experiments during that time,” said Pat Smith, president of the Jackson, N.J.-based group. “Absolutely it needs to be looked at. The public needs to know if this has occurred.”

And if it turns to be true?

“Maybe there is something in the research that would lead to helping patients get better or constrain the spread of ticks across the country,” Smith said.

Category:

Activism, Lyme, Ticks

Newby Responds to Washington Post’s Slam About Bitten

https://www.lymedisease.org/newby-responds-wapo/

Newby responds to Washington Post’s slam about BITTEN

Washington Post on Bitten

On July 17, the Washington Post reported on the House of Representatives’ recent request for an investigation into allegations that Lyme disease may have been weaponized. New Jersey Congressman Chris Smith cited the recent book, BITTEN, when he proposed the amendment to Defense Department funding. In the Post’s article, reporter Morgan Krakow quotes a scientist as saying “there’s just no credible evidence,” pointing to weaponizing ticks or Willy Burgdorfer’s involvement with such a project.

BITTEN’s author, Kris Newby sent the following response to the Post. It is republished here with her permission.

I’m the author of BITTEN, an engineer by training, a Stanford science writer by profession, and a lover of getting the facts right.

My first real job was as a Washington Post papergirl during the unfolding of the Watergate scandal. Every morning around 5 a.m., before I stuffed newspapers into the wire baskets of my royal-blue-fat-tire Schwinn bike, I was thrilled to be the first in my neighborhood to read the latest revelations from the Watergate reporters, Woodward and Bernstein.

They were my heroes, role models who in some small way led me to this point in life, when I was able to reveal a major finding, the weaponization of ticks during the Cold War.

In my book, I present ample evidence that accidents associated with this massive bioweapons program may have contributed to the mysterious epidemic of tick-borne diseases that was first noticed around Long Island Sound in the late 1960s.

I felt an infinite sadness when I read Morgan Krakow’s coverage of this story, which got many facts wrong and relied on an expert who hadn’t read the evidence in my book, or worse yet, ignored it for political reasons.

The cited expert, Michael Osterholm, may have personally known the discoverer of the Lyme bacterium, Willy Burgdorfer, but this didn’t mean that he knew what was inside of his heart.

Over five years, I have an unearthed an extensive array of documents that prove his role in the bioweapons program, and I have a videotaped interview of Willy where he told me about some of his bug-borne biowarfare experiments.

Evidence leads us to conclude that the epidemic of sickness during the late 1960s was not caused by the Lyme bacterium, but another genetically engineered organism that no one is looking for.

Towards the end of his life, he felt remorse about this dark pursuit, and it was obvious that he wanted to set the record straight before his death. His admissions aren’t something that we want to believe, but now that the truth is out, we, as compassionate human beings, must put our Cold War past behind us and strive to stop the suffering.

Read the Washington Post’s story here.

Read LymeDisease.org’s review of BITTEN here.

Kris Newby is Communications Manager and Science Writer for the Research Office at Stanford University’s School of Medicine.

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For more:  https://madisonarealymesupportgroup.com/2019/05/01/interview-with-kris-newby-bitten-the-secret-history-of-lyme-disease-biological-weapons/

https://madisonarealymesupportgroup.com/2019/05/15/is-lyme-disease-a-bioweapons-experiment-gone-bad/

https://madisonarealymesupportgroup.com/2018/12/19/its-1984/

https://madisonarealymesupportgroup.com/2019/07/19/biological-warfare-experiment-on-american-citizens-results-in-spreading-pandemic/

https://madisonarealymesupportgroup.com/2019/05/17/where-lyme-disease-came-from-and-why-it-eludes-treatment/

https://madisonarealymesupportgroup.com/2019/07/16/house-orders-pentagon-to-say-if-it-weaponized-ticks-and-released-them/

https://madisonarealymesupportgroup.com/2019/07/21/got-15-minutes-the-officially-ignored-link-between-lyme-plum-island/

 

 

 

 

Category:

Activism, Lyme