Archive for the ‘Lyme’ Category

Contentious TBDWG Vote Delivers a Win For Patients

https://www.lymedisease.org/tbdwg-patient-viewpoint-prevails/

TOUCHED BY LYME: Contentious TBDWG vote delivers a win for patients

Dorothy Kupcha Leland

Nov. 20, 2020

Capt Scott Cooper and Pat Smith

The current session of the federal Tick-Borne Disease Working Group is drawing to a close. This panel has been meeting since June 2019 and its 2020 Report to Congress is due in December.

On November 17, it held what may have been its most significant meeting to date. This was as much for what it told us about the people on the panel and the entities they represent–as well as the public vote that was taken.

The most important and by far the most contentious item on the agenda was Chapter 7 of the upcoming Report to Congress.

This chapter encompasses many of the themes that the patient community cares most deeply about:

  • The barriers Lyme patients face getting the medical care they need
  • The lack of insurance coverage for long-term Lyme treatment
  • The stigma that patients face
  • Diagnostic errors that prevent patients from receiving the diagnosis and treatment they need to get well
  • The fact that the science in Lyme disease is unsettled
  • That divergent views about treating chronic Lyme disease exist
  • That shared medical decision-making should be used. (The concept that doctors and patients should discuss all treatment options and jointly decide how to proceed is generally encouraged in the medical arena. Except for Lyme disease, when instead everyone is supposed to just blindly follow the IDSA guidelines.)

Indeed, the drive to address these problems was why Lyme advocates fought so hard for the formation of the Working Group in the first place. The idea was to bring divergent voices to the table—including those of chronic Lyme patients—to jointly hammer out ways to help members of a marginalized community obtain the care they need and deserve.

And it is precisely those patient concerns that certain members of the Working Group (and the agencies or organizations they represent) cannot stomach, which has been evident from the start.

Naming Shapiro was early indication of problems ahead

An early example of this was when the Department of Health and Human Services selected the IDSA’s Eugene Shapiro, MD, for the panel. Shapiro has publicly denigrated Lyme patients for decades and actively worked against their interests. Among other things, he is a named defendant in Torrey v. IDSA et al, a federal lawsuit claiming he and others have colluded with insurance companies to deny care to Lyme patients.

Furthermore, at this panel’s first meeting in June of 2019, Co-chair David Walker announced that the previous Working Group had focused enough on Lyme disease. He didn’t think this panel should spend any more time on it. (He researches rickettsial infections and apparently wanted the group to pay more attention to that topic.)

Alas, such minimizing of the concerns of chronic Lyme patients has been evident from Walker and a few others ever since.

Eugene Shapiro skipped a lot of meetings early on, handing over his proxy to Walker. This meant Walker voted on behalf of Shapiro whenever the opportunity arose. Thus, for much of his time on the Working Group, Shapiro took no part in anything remotely resembling consensus-building—which at a minimum requires hearing and considering other viewpoints before casting a vote. You can’t consider other perspectives if you are not in in a position to hear them.

When he did participate, Shapiro disparaged any mention of persistent infection in Lyme, calling the concept “nonsense” and “unsubstantiated.” He opposed references to the ILADS guidelines and belittled any mention of the MyLymeData patient registry. “Propaganda,” he spat out. “No scientific validity.”

FACA violations

That all happened in previous meetings. Other efforts to gut Chapter 7 by diluting its contents (or throwing it out the window) took place behind closed doors. This violated the Federal Advisory Committee Act—FACA—which governs the Working Group and requires open meetings. The panel’s lone patient representative, Pat Smith, rightly called this out and forced the anti-Lyme cabal to address the issue in public.

Now, on November 17, the rubber was hitting the road. At this last full “working meeting” before finalization of the report, a big question in the Lyme community was “What will happen to Chapter 7?”

In a nutshell, Walker, Shapiro and Dennis Dixon (of the National Institutes of Health) tried again to torpedo it. They offered the same-old, same-old complaints, wanting to re-litigate issues such as the patients’ right to obtain access to the care they need to get well, shared medical decision-making, two standards of care, and—horror of horrors—persistent Lyme disease. (Even though the chapter’s major recommendations had been approved by the panel months ago.)

Effort to block

Walker termed these items “totally irrelevant to the chapter.” He and his team accused Pat Smith and her panel colleague Captain Scott Cooper of “railroading” their own ideas through the Working Group, and generally tried to block the chapter from being included in the recommendations to Congress.

Pat and Captain Cooper didn’t stand for it. They kept calling for a vote on the chapter in its current form, which the others resisted. At one point, Pat lost her cool and really read the riot act to Walker and the others. She justifiably pointed out that this chapter had gotten more scrutiny—both in public meetings and in behind-the-scenes shenanigans—than any other chapter in the report. They were trying to scuttle the issues that patients care most about—but seemed reluctant to go on the record as doing so.

She finally said (I’m paraphrasing): “Put up or shut up. Vote yes or no. Let the public and Congress see where you stand.”

And after some more foot dragging, the panel voted. And look at the results:

Yes

  • Adalberto (Beto) Pérez de León, DVM, PhD, MS–US Department of Agriculture
  • Angel M Davey, PhD–US Department of Defense
  • Scott Palmer Commins, BS, MD, PhD–University of North Carolina
  • Sam T. Donta, MD
  • Pat Smith–Lyme Disease Association
  • Leith Jason States, MD, MPH (FMF)–US Department of Health and Human Services
  • Leigh Ann Soltysiak, MS (Co-Chair)
  • Captain Scott J. Cooper, MMSc, PA-C–Centers for Medicare and Medicaid Services

No

  • Charles Benjamin (Ben) Beard, PhD–Centers for Disease Control and Prevention (CDC)
  • Dennis M. Dixon, PhD–National Institutes of Health (NIH)
  • CDR Todd Myers PhD–US Department of Health and Human Services (HHS)
  • Kevin R. Macaluso, PhD, MS—University of South Alabama (He has been funded by the NIH to study rickettsial diseases.)
  • Eugene David Shapiro, MD–Infectious Diseases Society of America (IDSA)
  • David H. Walker, MD—University of Texas Medical Branch. (He has been funded by the NIH to study rickettsial diseases.)

Chapter 7 remains intact

The motion passed, 8-6. The patient viewpoint prevailed. Chapter 7 of the Report to Congress remains intact. Those who voted against it are expected to submit a minority response, to be included at the end of the chapter.

Interesting observation of those who voted against it: Most have deep ties to the CDC, NIH, and IDSA. (The CDC and NIH have long had cozy relationships with the IDSA.)
Yet, look at those who voted yes: USDA, Department of Defense, HHS. These are government employees who seemed open to the consensus-building process, to the idea of listening and learning from each other and actually trying to do right by patients in need.

By the way, Shapiro signed off the call after the vote on Chapter 7, even though there was more work to be done. It gave the appearance that he only dropped in to try to kill that chapter on behalf of the IDSA. When that didn’t work, oh well, who cares about the rest of this stuff?

The absolute final meeting of the 2019-2020 Working Group is scheduled for December 2. Click here for information about submitting written or verbal comments and to register to attend the meeting online.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

Related Posts:

  1. TOUCHED BY LYME: Shapiro and Walker tried having it both ways. It didn’t work.
  2. TOUCHED BY LYME: Walker & Shapiro fail to change report’s Chapter 7
  3. Here’s our summary of TBD Working Group’s Sept. 22 meeting, in tweets
  4. TOUCHED BY LYME: Vote now to recognize “Lyme and Reason” for excellence

_________________________

My letter to the TBDWG:  https://madisonarealymesupportgroup.com/2020/11/06/the-proof-is-in-the-pudding-my-letter-to-the-tbdwg/

Other letters:  https://madisonarealymesupportgroup.com/2020/08/27/the-lyme-voices-you-didnt-hear-at-tbdwg-meeting/

Category:

Activism, Lyme

Jack’s Lyme Story

https://globallymealliance.org/jacks-story/

Jack’s Story

This blog post is part of our People to Highlight Series during our 2020 Year-end appeal.  Each week we’ll be spotlighting a GLA community member who has helped to advance our mission.  To support GLA: DONATE HERE

by Jack Terry

Lyme disease has impacted my life incredibly, both in the present and in retrospect. I experienced a variety of symptoms, including but not limited to overwhelming fatigue, bone and joint pain, frequent headaches, trouble focusing, and neuropathy. After a few years of depression symptoms that never seemed to greatly improve, it was time for a change. We tried a holistic approach, testing my physical health too; at long last, we got an answer when my Lyme test came back positive.

For years I wasn’t sure if what I was experiencing was real. I wasn’t seeing any improvement with my mental health, and over time more and more physical symptoms came up

Being diagnosed with Lyme disease has given me many answers for a variety of health episodes in the past, such as kidney failure. My diagnois has been debilitating because Lyme disease is challenging, yet productive because I feel more connected to my body and what I need to be doing for it to feel its best. For years I wasn’t sure if what I was experiencing was real. I wasn’t seeing any improvement with my mental health, and over time more and more physical symptoms came up.

One simple blood test has given me my life back, and I’d encourage anyone looking for a potential answer to consider looking into Lyme disease if they are dealing with unexplained symptoms.

Since being diagnosed and having treatment, my situation has improved immensely, but I am far from fully recovered. The numerous antibiotics, supplements, and IV treatments can only help so much.
FINDING AN ALLIANCE
Jack Terry & Parents
Jack (on right) with his Mom and Dad.

My mom was the one who found Global Lyme Alliance. She is an avid researcher, and she searched endlessly for ways to help myself and people like me. That’s how she came across GLA. Global Lyme Alliance has given me hope. Knowing that there’s a community dedicated to helping those who suffer from this debilitating disease helps because I know that it’s not in my head. They make me feel heard, unlike some doctors I’ve seen in the past.

It’s so difficult to give back to an organization that already gives so much, but I decided to use the GLA platform to start a fundraiser for Lyme disease. I created the fundraiser for two reasons: to help fund important research for improving diagnostic tests and to spread awareness of how debilitating this disease is for those not treated soon enough. It frustrates me that countless people are undiagnosed and suffering from this illness without knowing the root cause; nobody should have to experience the pain endured from chronic Lyme.

I was overwhelmed with the number of people who showed their support to me and others like me. I raised over $8,300 for GLA. With this fundraiser, I felt like I was able to support a group that cares so much about this cause. If we all joined together, imagine the progress we could make!

As you may know, GLA is solely funded by donor support. Due to COVID-19, we have been unable to hold our usual fundraising events. Please donate below if you’d like to support GLA, our programs, and our mission.

Category:

Activism, Lyme

Dr. Murakami, Lyme and the Hero’s Journey

https://www.linkedin.com/pulse/dr-murakami-lyme-heros-journey-lori-dennis-ma-rp/ Used with permission

DR. MURAKAMI, LYME AND THE HERO’S JOURNEY

Photo Credit:  http://murakamicentreforlyme.org/About%20Dr%20Murakami.htm

By Lori Dennis, MA,RP
Registered Psychotherapist
 

In 1997, Apple created an award-winning ad campaign called “Think Different.” The creative text written by Rob Siltanen went like this:

Here’s to the crazy ones. The misfits. The rebels. The troublemakers. The round pegs in the square holes. The ones who see things differently. They’re not fond of rules. And they have no respect for the status quo. You can quote them, disagree with them, glorify or vilify them. About the only thing you can’t do is ignore them. Because they change things. They push the human race forward. And while some may see them as the crazy ones, we see genius. Because the people who are crazy enough to think they can change the world, are the ones who do.

This copy was a huge hit. Why? Because we love the underdog, the hero, the so-called “crazy ones” who break the rules in the name of justice. We love this copy because we relate to it. We love it because it hits a nerve. We love it because we know, without question, that it’s the so-called crazy ones, the ones who go against the grain, the ones who have the courage to stand up to the powers that be, that push for change, who we root for and admire.

Think of David and Goliath, Nelson Mandela, Erin Brockovich, Norma Rae. Everyone loves an underdog. We can relate to this unlikely quintessential hero who has to work hard for his or her heroism. Fight hard for his or her cause. We long to support this archetypal character in movies, plays, literature, fables—and in real life.

The underdog allows us to root for the seemingly less powerful one, revel in a success story, feel something deeply, have our hearts and our minds captured by someone worthy of our attention and admiration. While so many doctors are reluctant, even terrified, to speak out about chronic Lyme disease, there are some true heroes in the Canadian Lyme story.

Dr. Ernie Murakami of Hope, British Columbia, is one of these Canadian heroes. A rebel with just cause. This passionate and highly compassionate eighty-four-year-old former MD and chronic Lyme activist is a voice of reason in the Canadian Lyme War. Murakami has been dedicated to understanding and healing chronic Lyme disease for much of his career.

Dr. Murakami is beloved because he is one of those round pegs in a square hole. Unlike the majority of doctors in this country, he is determined to help Lyme sufferers and to make sacrifices to do so. We admire him because he “gets it,” because he is generous with time and knowledge, and because he cares.

This man has a big heart.

Throughout his medical career, having a degree in bacteriology and immunology, he directly treated more than 3,000 people with chronic Lyme disease, and another 6,000 indirectly. In 2008, after years of being investigated, bullied, and harassed by the College of Physicians and Surgeons of British Columbia, he relinquished his medical license.

He suffered at the hands of the College and it affected his health and well-being. Upon the insistence of his wife—who was worried about his health—he eventually decided to give up his license and find other ways to keep serving the Lyme community. But not without a good college try.

Today he stays in the Lyme world by teaching naturopaths in British Columbia how to treat chronic Lyme, by providing free information to medical doctors, and by focusing on his breakthrough research on cannabidiol (CBD)—a derivative of the hemp plant, which is an effective treatment for symptomatic control for Lyme and other chronic illnesses. He also makes himself accessible to support and direct Lyme sufferers by phone or by text when approached.

When I was in the throes of writing Lyme Madness in 2015, I had the pleasure of speaking with Dr. Murakami. Here is what he had to say:

“The medical profession has been misdiagnosing Lyme disease for decades. In Canada, we have the highest M.S. cases in the world according to the MS International Society and we have the lowest Borrelia Burgdorferi cases in the world according to WHO (World Health Organization).

Germany has reported nearly one million cases of Lyme disease in one year recently as evidenced by the cases of Chronic Erythematous Migrans rash clinical diagnosis and laboratory tests. The temperature and environment is the same in Canada as in Germany but we barely come close to the reported number of cases. Canada reports that it has the lowest numbers of Lyme disease in the world by WHO and the highest number of Multiple Sclerosis cases in the world 240-340/100,000 population. No other country comes close to this figure.

Germany’s land size is 349,2233 square kilometers and Canada has 9,982,679 square kilometers or twenty eight times the land size and the rapid warming effect of the world is identical up to the Arctic circle in Canada and the European continent. It is long overdue that we demand an explanation and in my personal feeling a very obvious MISDIAGNOSIS by our medical profession.

The test results and interpretations of them that patients get from infectious disease doctors are seriously wrong because these doctors are uninformed, misinformed and closed-minded about chronic Lyme. In medical school, we are not taught about the Lyme spirochete and the survival forms which require specific prolonged therapy. Instead, the IDSA teaches members that thirty days is all that is needed to cure this disease at any stage.

The ELISA and Western Blot antibody tests are the same around the world. Our results in Canada indicate that there are very low numbers testing positive in Canada. This is not true.

And without question, the long-term use of antibiotics to treat chronic Lyme has more benefits than risks. I’ve seen what this disease can do to people when it’s not treated long term. It can disable people for life.

Because there is not one doctor in Canada who can or will treat Lyme sufferers with antibiotics for more than the 28-day IDSA sanctioned protocol, we are being forced to tap into ‘out of country’ for Lyme treatment—primarily in the US. We are forcing patients to spend upwards of $50,000 for treatment.

Canadian doctors, like myself, who are vocal about treating chronic Lyme have been shut down. It’s never stated directly. But they will harass you and bully you until you’ve had enough. They make you seem incompetent. That’s what happened to me.”

Murakami says doctors regularly phone him for advice about how to treat patients but don’t want anyone to know that they’re consulting with him for fear they will be investigated by their Colleges or peers. He continues,

“My colleagues are all afraid that what happened to me will happen to them.

“The only colleague of mine who stood by my side was Dr. Pat McGeer, Neurological Disease Researcher at UBC and because of his support, he no longer has a license. We have both suffered the same fate because we chose to help Lyme patients.

In my case, the College made me seem incompetent. I couldn’t keep attending their mandated professional development lectures. In my career, I’ve gotten lots of letters of support and commendations. Yet they hired two doctors and sent them to my office—after 40 years of practice—to oversee my work. I ended up with hypertension, ulcers, mild strokes, bleeding bowels. My wife begged me to quit so I resigned, gave up my license. I was condemned for making people better.

The medical world is petrified to diagnose or treat this disease because they will be investigated. It’s tragic. When it comes to chronic Lyme, there is pathological denial. I don’t understand the resistance but I was a victim of it like all of the sufferers out there.”

Murakami’s passion is his research into the use of cannabidiol for the treatment of Lyme disease, as well as cancer, epilepsy, and other chronic illnesses. Says Murakami,

“In the past 20 years, since my first case of this disease when the patients were telling me that when all the standard medications were not helping the severe symptoms of pain, arthritis, fatigue, depression (with suicidal ideation), mental fog with multi-organ failure, they resorted to smoking marijuana.

I was deathly against the use of pot and smoking but I was becoming more interested in the benefits mentally and physically and I directed them to use the cannabidiol oil or paste since there were no psychoactive effects.“

When Murakami learned that he, himself, had an asymptomatic brain tumor—discovered after hitting his head on a beam while playing hockey with his grandson—it led him to investigate the treatment of a brain malignancy. It was then that he came across the use of cannabidiol in dissolving a glioma tumor. Says Murakami,

“I thought this was an impossibility until I saw the MRI reports showing the absolute gradual resolution of the tumor in four months. Other anecdotal cases of cannabidiol treating chronic infections resistant to standard antibiotics convinced me that there was an antibiotic effect with cannabidiol. Patients who had used CBD for up to three years and were unable to continue due to the cost found their symptoms of Lyme disease did not return. CBD appears to also be effective treating other co-infections as well. This made me suspect a potential antibiotic effect on Lyme disease and co-infections.”

Dr. Murakami continues to be involved in the E. Murakami Centre for Lyme: Research, Education and Assistance Society and still answers inquiries.

To those of us in the Canadian Lyme world, Dr. Ernie Murakami will always be a true hero. A doctor who cared enough to risk his own profession, and sacrifice his own health and well-being to support and care for Lyme sufferers from coast to coast. We are all indebted to him, his expertise and his humanitarian efforts that go above and beyond the call of duty.

Lori Dennis, MA, RP is a Registered Psychotherapist and the author of LYME MADNESS, named #1 NEW RELEASE in Immune System Health on Amazon. LYME MADNESS is available on Amazon. For more information on Lyme Madness, go to loridennisonline.com. 

(Above is an excerpt from Lyme Madness – pp 302-309)

Postscript: This past January 27th 2017, Dr. Murakami’s beloved wife Patricia passed away after a prolonged illness, with her husband by her side. She is survived by Dr. Murakami, her sister Lucy, and daughter Julie, sons Paul and Douglas, granddaughter Emily and grandson Che. Patricia met and married Dr. Ernie Murakami at a hospital where she was working as a psychologist and Moved to Hope B.C. and was employed by the upper Fraser Valley School Board as a child psychologist.

________________________
 
**Comment**
 
I recently wrote about the AMA’s sordid history of condemning anything that competes with their allopathic products (tests, treatments, vaccines, etc).  Right now, they are going after homeopathy:  https://madisonarealymesupportgroup.com/2020/11/13/fda-declares-homeopathic-medicine-illegal-help-save-it/  History lesson in the comment section.
 
  • In short it took 11 years of continual litigation by some chiropractors who had had enough of the bullying to finally win their case which put a “cease and desist” order into place against the AMA for its concerted actions against the chiropractic profession.
  • It also took years for a “cease and desist” order against the AMA’s “seal of approval” on food products, which supplicants paid for.  They didn’t even have the lab equipment to test food!  Meanwhile, the FDA seized many of these products due to decomposed animal substances in them.

Yes, the AMA, CDC, and other large organizations are all about monopolizing medicine:

  • People were arrested for giving away booklets on vitamins.   Others received fines and prison sentences.  Injury was never alleged.
  • Heavily armed SWAT teams, often in the dead of night, broke down doors to capture elderly women and their stocks of herbal teas.
  • A Dr. Mendelsohn called modern medicine “The Church of Death,” whose Four Holy Waters are 1) immunizations 2) fluoridated water 3) IV fluids 4) silver nitrate.
 
 
 
 
 

Here we learn Facebook and Google spent $700 Million to “Buy off the press”:  https://www.naturalnews.com/2020-10-27-facebook-google-spent-700-million-buy-off-the-press

Name-calling and bullying are the new ‘science’: https://madisonarealymesupportgroup.com/2020/07/25/anti-vax-labelling-and-the-mainstream-media-who-is-coordinating-this/  They’ve done this with masks as well – equating anyone who doesn’t wear a mask as someone who is killing grandma.  Ludicrous!
 
And just today an article titled, “AMA: Docs Must Fight False Facts, Belittlement of Science,” came out with the president of the AMA stating:
 
“Never again can we allow anti-science bias and rhetoric to undermine our public health institutions and discredit the work of physicians, scientists and researchers.”  https://www.medpagetoday.com/meetingcoverage/ama/89677
 
The article doesn’t state exactly what this “anti-science” bias is but please remember that numerous articles on COVID have been retracted due to horrible science.  Also, when you understand the AMA’s long history of bullying any medicine that conflicts with their own lucrative allopathic treatments it becomes clearer that a doctor recommending vitamins would be considered “anti-science.”  
 
When you study the history of AMA bullying doctors and scientists such as Andrew Wakefield, Judy Mikovitz, various Lyme doctors, etc, it becomes clearer that this is NOT about unscientific rhetoric, it’s about control.  

For more:  http://murakamicentreforlyme.org/Home.htm

Category:

Activism, Lyme, Treatment

Yale Scientists Identify Protein That Protects Against Lyme Disease

https://news.yale.edu/2020/11/11/yale-scientists-identify-protein-protects-against-lyme-disease

Yale scientists identify protein that protects against Lyme disease

By Bill Hathaway
November 11, 2020
Lyme tick
(© stock.adobe.com)

Yale researchers have discovered a protein that helps protect hosts from infection with the tick-borne spirochete that causes Lyme Disease, a finding that may help diagnose and treat this infection, they report Nov. 11 in the journal PLOS Pathogens.

Lyme Disease is the most common vector-borne disease in North America and is transmitted by ticks infected with the spirochete Borrelia burgdorferi. The course of the disease varies among individuals, with the majority experiencing mild symptoms easily treated by antibiotics. However, in some cases of untreated Lyme the infection can spread to the heart, joints, nervous system, and other organs.

For the study, the Yale team expressed more than 1,000 human genes in yeast and analyzed their interactions with 36 samples of B. burgdorferi. They found that one protein, Peptidoglycan Recognition Protein 1 (PGLYRP1), acts like an early warning signal to the immune system when exposed to the bacteria. When exposed to the Lyme spirochete, mice lacking PGLYRP1 had much higher levels of B. burgdorferi than mice with the protein and showed signs of immune system dysfunction, the researchers report.

“Stimulating the ability of people to make more of this protein could help fight infection,” said Yale’s Erol Fikrig, the Waldemar Von Zedtwitz Professor of Medicine (Infectious Diseases) and professor of epidemiology (microbial diseases) and of microbial pathogenesis and co-corresponding author of the study.

Fikrig and his colleagues are also investigating whether people with higher levels of PGLYRP1 may be less susceptible to infection by B. burgdorferi, which would help explain why some infected individuals have better outcomes.

Yale’s Noah Palm and Aaron Ring are co-corresponding authors of the paper.  Akash Gupta, Gunjun Arora, and Connor Rosen of Yale are co-lead authors.

The work was primarily funded by the National Institutes of Health and the Steven & Alexandra Cohen Foundation, a nonprofit that supports Lyme and tick-borne disease research.

______________________

**Comment**

A few points:

They state, “The course of the disease varies among individuals, with the majority experiencing mild symptoms easily treated by antibiotics. However, in some cases of untreated Lyme the infection can spread to the heart, joints, nervous system, and other organs.”

OK – this is FALSE.

No, a majority do NOT experience mild symptoms easily treated with antibiotics.
  • Current CDC 2-tiered testing is missing 70-86% of cases.  They have ZERO idea of prevalence due to all the people being misdiagnosed or undiagnosed.  Also, even the people who win the testing lotto and manage to test positive are told they have “false positives” and are sent home empty-handed to worsen.
  • As to being “easily treated with antibiotics,” how do you explain the 40-60% or more who go on with life-long symptoms?  https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/ and the fact there has been treatment failure in nearly every antibiotics study ever done?  https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/
  • They state that only the “untreated Lyme” patients struggle with infection in the heart, joints, CNS, and other organs when this can happen WITH those who are treated as well.  In fact, in my experience ALL the patients I deal with have these severe symptoms.  ALL!
  • While I don’t want to appear to be a stick in the mud, I’m highly skeptical that lacking a certain protein is the sole reason for having lower levels of Bb.  I can think of numerous reasons for this – including being infected with numerous pathogens – suppressing the immune system.
  • Stay tuned.  These studies promise a lot but often deliver little, especially when the premise behind it all is that this complex illness is due to immune dysregulation NOT the underlying persistent infection. Again, in my experience it’s both that are a problem but by treating the underlying infection, the immune dysregulation is also treated.

Category:

Lyme, research

Galaxy Diagnostics Launches Direct Detection Test For Lyme Disease

https://www.prlog.org/12846049-galaxy-diagnostics-launches-the-most-sensitive-test-available-for-direct-detection-of-lyme-disease.html

Galaxy Diagnostics Launches the Most Sensitive Test Available for Direct Detection of Lyme Disease

Science Leader in the Testing of Flea and Tick Borne Illness Introduces the Nanotrap® Urine Test for Lyme Borreliosis

By: Galaxy Diagnostics, Inc.123

Nanotrap Most Sensitive Test for Lyme Borreliosis

Nanotrap Most Sensitive Test for Lyme Borreliosis

DURHAM, N.C. – Nov. 10, 2020 – PRLog — Galaxy Diagnostics, Inc., the science leader in sample enrichment powered testing solutions for elusive flea and tick-borne pathogens, today announced the launch of the Nanotrap® Urine Test for Lyme Borreliosis.  This urine-based Lyme antigen test provides the most sensitive direct detection of Borrelia burgdorferi infection at all stages of the disease.  The test provides advantages antibody testing does not, namely:

  • Identifies positive cases missed by CDC-recommended Two-Tiered Testing (TTT)
  • Reduces concern for false positive results via direct detection of OspA proteins
  • Uses easy-to-collect urine sample

The revolutionary test greatly increases the likelihood of Lyme disease confirmation via innovative Nanotrap® technology developed by Ceres Nanosciences. Nanotrap® particles capture and concentrate low abundance Outer surface protein A (OspA) in urine samples confirmed by a highly sensitive Western blot.

Published data shows that the Nanotrap Urine Test is very effective for confirmation of early stage Lyme borreliosis in patients with EM rashes (24/24). Galaxy validation data (unpublished) shows that the Nanotrap® Urine Test will often confirm active infection in patients with negative TTT results. Further research is needed to confirm clinical utility for other presentations of Lyme borreliosis, including Lyme arthritis, Lyme carditis, and neuroborreliosis.

“The addition of the Nanotrap® test aligns with our mission to bring the most scientifically advanced sample enrichment technologies and diagnostic advances to the forefront of flea and tick borne disease”, said Galaxy CEO Amanda Elam. “Lyme disease is the fastest growing tick-borne illness in the United States. We are committed to improving the standard of care around detection of these elusive, low abundance pathogens to ensure better patient care for millions globally.”

Galaxy advocates for a new standard of care in Lyme Borreliosis testing and recommends a combination diagnostic protocol with Nanotrap® Urine test to confirm active infection and the CDC recommended TTT to detect the presence of antibodies.

You can order here and learn more at galaxydx.com.

About Galaxy Diagnostics

Galaxy Diagnostics is a privately held medical laboratory located in Research Triangle Park offering the only testing solutions powered by revolutionary sample enrichment technologies for elusive flea and tick borne pathogens. The company’s mission is to “Go Beyond” the limits of conventional detection by driving scientific innovation, creating new clinical knowledge through research and publication, and providing medical education and excellent customer support to healthcare providers, veterinarians, patients, and research customers in this important area of emerging infectious disease.

About Ceres Nanosciences

Ceres Nanosciences is a privately held company, located in Northern Virginia, focused on incorporating its novel Nanotrap® particle technology into a range of diagnostic products and workflows. The Nanotrap® particle technology can improve diagnostic testing by capturing, concentrating, and preserving low abundance analytes from biological samples. The Nanotrap® particle technology was developed with support from the National Institutes of Health (NIH), the Defense Advanced Research Projects Agency (DARPA), the Bill and Melinda Gates Foundation, Schmidt Futures, the Defense Threat Reduction Agency (DTRA), and the Commonwealth of Virginia.

Contact
James Rebenski
***@galaxydx.com

Photos:
https://www.prlog.org/12846049/1
https://www.prlog.org/12846049/2
https://www.prlog.org/12846049/3

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**Comment**

According to Dr. Shor, this “urine-based antigen test,” based on the OspA protein, is 100% sensitive for acute cases with EM rash (24/24 patients with EM rash tested positive). Please remember that while appearing successful for acute Lyme, this is a small study group. Also, having the EM rash is DIAGNOSTIC for Lyme – i.e. no testing even required.

It is far less effective for those who are chronically infected. It was positive for 42% out of 100 chronically ill patients.

I believe I heard Dr. Klinghardt recommend rolfing (deep tissue massage) before taking this test to force the organisms out in the blood where they can be excreted and picked up on this urine test.

To watch Dr. Shor’s presentation:

http://  Approx. 1 hour 20 Min

May 24, 2017

NatCapLyme Presentation

Diagnosing people early is critical as doctors, despite knowing this complex illness can become very severe and more difficult to treat if left untreated, continue to take a ‘wait and see’ approach. They continue to rely upon faulty testing that misses anywhere from 70-86% of cases, and often wait for test results before treating – dooming thousands of patients to a life-time of suffering. This test will hopefully help these early cases; however, it will not be as effective for the chronically infected – nor help with those who are coinfected.

Diagnosing tick-borne illness has always been a clinical diagnosis.

Time for doctors to become educated instead of lazily relying upon faulty testing.




Category:

Lyme, Testing