Madison Area Lyme Support Group

Free Webinar on Lyme – Dr. Sue Massie

https://tdinj.com/tdiwebinars/lyme-great-imitator/

Topic: Lyme: The Great Imitator

Date: Wednesday, 29 November 2017, at 07:00 pm EST

Presenter: Dr. Sue Massie

Cost: Free

• CALL US: (856) 596-5834

Thermographic Diagnostic Imaging/Health Through Awareness presents Dr. Sue Massie, a Board Certified Naturopathic Doctor as well as a Certified Natural Health Professional (CNHP). The title of Dr. Massie’s talk is “Lyme: The Great Imitator.”

With the number of confirmed Lyme disease cases on the rise, the general population is becoming more aware of the primary physical indicators of the disease: a tick bite, a bulls-eye rash around the area, fever and joint pain. Unfortunately, this is not the whole picture of the Lyme presentation. What most people and even physicians are unaware of, however, are the devastating neurological effects this disease can cause. Lyme disease is now confirmed as the “root cause” of many diagnoses e.g. Parkinson’s disease, ALS, MS, and a multitude of other degenerative, neurological diseases.

Please join us as Dr. Sue Massie shares her personal experience as well as the latest information on Lyme disease.

About the Presenter:

Dr. Massie is well-versed in holistic, drug-free health programs with lasting results. She specializes in degenerative, neurological diseases with Lyme disease, fibromyalgia and chronic fatigue being at the top of her list. Dr. Massie’s passion is identifying the root cause of a patient’s problem. She then teaches the patient how to detoxify, cleanse, nourish and rebuild their health. Dr. Massie has a practice in Red Bank, NJ.

**Comment** 

This is 7pm eastern time.  We here in Wisconsin are in Central time which means it’s at 6pm for us.

Lyme Patients File Lawsuit Against IDSA and Insurers Over Treatment Denials

https://www.lymedisease.org/lyme-patients-sue-idsa-insurers/
NOV 2017

Lyme patients file lawsuit against IDSA and insurers over treatment denials

From Courthouse News Service, Nov. 14, 2017:

TEXARKANA, Texas (CN) – Twenty-eight people claim in a federal antitrust lawsuit that Lyme disease victims are being forced to pay hundreds of thousands of dollars for treatment because health insurers are denying coverage with bogus guidelines established by their paid consultants, who falsely say the disease can always be cured with a month of antibiotics.

For actual lawsuit:  https://www.courthousenews.com/wp-content/uploads/2017/11/LymeDisease.pdf

**Researchers have been saying borrelia persists for a long time.  That message is not believed by the CDC/NIH/IDSA.  Since this is a political war, not a scientific one, doctors and researchers clearly understand their reputations and jobs are at stake if they depart from the controlled IDSA narrative.  

Viable spirochetes have been found in red blood cells after refrigeration for as long as 6 weeks, and being frozen in 4 degrees C.  It’s also been found in fresh frozen plasma, below -18 degrees C, for 45 days and in plateletconcentrates, 20-24 degrees C, for 6 days.  https://ticktalkireland.wordpress.com/lyme-links/transmission/.

And more just keeps coming out:  https://madisonarealymesupportgroup.com/2015/09/19/proof-of-borrelia-persistence/

https://madisonarealymesupportgroup.com/2017/08/18/drexel-prof-lyme-persists/

https://madisonarealymesupportgroup.com/2016/08/09/dr-paul-duray-research-fellowship-foundation-some-great-research-being-done-on-lyme-disease/

https://madisonarealymesupportgroup.com/2017/11/03/lyme-bug-stronger-than-antibiotics-in-animals-and-test-tubes-now-study-people/

Suffering from migraine headaches, an irregular heartbeat, hearing problems and nerve pain, lead plaintiff Lisa Torrey says in the lawsuit filed Friday in Texarkana, Texas federal court that she visited 36 doctors, some of whom misdiagnosed her with multiple sclerosis and fibromyalgia and said her symptoms “were all in her head,” before she was properly diagnosed with Lyme disease.

**This “all in your head” stuff must end, and it’s a common thing Lyme/MSIDS patients hear over and over ad nauseum.  Obviously, if one thinks logically for just one moment, thousands and thousands of people can’t all be nuts.  Something is causing long-term symptoms after being infected with a tick bite – that responds to long-term antibiotics.  Do the math.**  https://madisonarealymesupportgroup.com/2017/09/21/its-all-in-your-head-until-finally-a-lyme-diagnosis/

People get the disease from the bites of infected ticks and many break out with a large red rash around the bite that looks like a bullseye.

**Yes and no.  Many never see a tick or a rash.  Requiring those for a diagnosis has caused untold harm to patients over the years.  Lyme/MSIDS is a clinical diagnosis.  Tests are rarely useful. There is congenital transmission and probably is a STD.**

There were more than 28,000 confirmed cases of Lyme disease in the United States in 2015, 95 percent of which came from 14 states in the Northeast and Midwest, according to the Centers for Disease Control and Prevention. The agency estimates that 300,000 people are infected with the disease each year.

Torrey – represented by lead attorney Eugene Egdorf with Shrader & Associates in Houston – lays part of the blame for her lack of health insurance coverage on the Infectious Diseases Society of America, or IDSA, a medical association whose 11,000 members research diseases and lead panel discussions about them. IDSA also develops clinical practice guidelines.

Torrey claims in her lawsuit that several major health insurers decided in the 1990s that treating Lyme disease was too expensive and bad for their bottom lines, so they paid IDSA-affiliated doctors – who were researching, not treating, Lyme disease – to establish arbitrary guidelines in 2000 that said the disease could be treated with 28 days of antibiotics.

“These doctors knew that short term antibiotics of twenty-eight days failed to treat up to 40 percent of patients with Lyme disease. This means more than 100,000 Lyme disease patients every year would be untreated if the IDSA guidelines were followed,” the lawsuit states.

Torrey sued the IDSA, Blue Cross and Blue Shield Association, Blue Cross and Blue Shied of Texas, Anthem Inc., Aetna Inc., Cigna Corp., Kaiser Permanente Inc., United HealthCare Services Inc., UnitedHealth Group and several medical doctors.
In addition to attorney Egdorf, Torrey and her co-plaintiffs are represented by Ryan Higgins with Rusty Hardin & Associates in Houston and Lance Lee in Texarkana.

Please also see:  https://madisonarealymesupportgroup.com/2017/08/28/metlife-discrimination-against-chronic-lyme-patient/, https://madisonarealymesupportgroup.com/2017/03/09/remember-vicki-logan/, https://madisonarealymesupportgroup.com/2017/08/19/dr-liegner-guidelines-used-by-managed-care-causing-lyme-deaths/

Torrey claims that she and others suffering from chronic Lyme disease need antibiotics for several months until their symptoms go away, but that the IDSA doubled down in 2006 and once again tapped doctors on the payroll of the defendant health insurers to come up with even more restrictive guidelines for treating Lyme disease.

“The 2006 IDSA Guidelines actually ‘promote the idea that Lyme is a simple, rare illness that is easy to avoid, difficult to acquire, simple to diagnose, and easily treated and cured with 28 days of antibiotics,’” the lawsuit states. “Even though the IDSA guidelines are not rules or requirements, the insurance defendants treat them as ‘de facto’ law that must be followed by doctors and refuse to cover treatment beyond the IDSA guidelines.”

According to the lawsuit, the 2006 guidelines reference an article by Dr. Leonard Sigal, a defendant in the lawsuit, in which he claims “’Chronic Lyme disease’ is a common clinical diagnosis in some geographic areas and is based on thinking that is at odds with scientifically validated findings.”

Torrey says the insurers began working with Sigal to deny Lyme disease coverage in the 1990s.

Sigal testified in a 1996 deposition that the defendant insurers paid him $560 an hour to review Lyme disease files for them and that he almost always denied coverage, according to the complaint.

**Please see this article for more on Sigal’s shenanigans**  https://madisonarealymesupportgroup.com/2017/09/02/lyme-disease-and-long-term-antibiotics-contagion-live/

Torrey claims doctors who criticized the guidelines as too restrictive put their medical licenses at risk as they were targeted by the insurers.

“As a result of their speaking out, from 1997 to 2000, more than 50 physicians in New York, New Jersey, Connecticut, Michigan, Oregon, Rhode Island and Texas were investigated, disciplined or had had their licenses removed. Many of these doctors were reported to their medical boards by the insurance defendants,” the complaint states.

The insurers also allegedly reported doctors who were treating chronic Lyme disease to state medical boards, leading many doctors to refuse to treat Lyme disease patients.

**This is happening in every state in the U.S. and numerous docs in Wisconsin causing untold stress and anxiety, $50K and more in legal fees, and patients being turned away and having to stop treatment.  When a Lyme doc suffers, we all suffer.**

https://www.wis.community/blogarticle/wisconsin-lyme-doctor-gets-reprieve

https://madisonarealymesupportgroup.com/2017/06/24/llmd-daniel-cameron-disciplined-by-ny-medical-authorities/

The results of the treatment guidelines and doctor bullying have been disastrous for Torrey and her co-plaintiffs, she says.

They’ve been forced to travel long distances to find doctors willing to treat them, if they are healthy enough to travel, and pay thousands of dollars out of their pockets because doctors do not want to submit their claims to insurers, the complaint states.

Torrey says she suffers every day from the disease that can kill its victims.

Other plaintiffs are suing for the estates of Al Barnes, who developed paralysis before dying from untreated Lyme disease, and David Kocurek, who was an aerospace engineer and worked for NASA. Kocurek suffered from symptoms akin to the trembling and jerky movements caused by Parkinson’s disease.

“He visited more than 25 doctors and was told he did not have Lyme disease. He even tested negative for Lyme disease based on the IDSA testing guidelines,” the lawsuit states. “He was only diagnosed with Lyme disease after he researched the issue himself and convinced his doctor to test him again.”

**If I had a nickel for everyone who tells me, “I tested negative, I don’t have Lyme disease,” I’d be a millionaire.  Please know the current two-tiered CDC testing misses over half of the cases and no regular doctors are even considering the coinfections that typically come along with Lyme and are just as dangerous**

https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/

https://madisonarealymesupportgroup.com/2017/05/01/co-infection-of-ticks-the-rule-rather-than-the-exception/

Kocurek paid for his treatments and died from the disease in April 2016.

Torrey and her co-plaintiffs seek treble damages for RICO Act and Sherman Act antitrust violations.

To back their RICO claims, they say the insurers formed an enterprise rife with mail fraud and wire fraud with the IDSA and its panelists, by mailing fees over state lines to the panelists to pay for their allegedly fraudulent Lyme disease treatment guidelines.

IDSA spokeswoman Jennifer Morales declined to comment on the lawsuit, but defended its Lyme disease guidelines in a statement Tuesday.

“While anecdotal evidence may be relevant at times, it cannot be the basis for guiding patient care. The published guideline, ‘The Clinical Assessment, Treatment and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis,’ reflects the best information science provided to the broad range of physicians who might treat a patient with symptoms of Lyme disease,” she said.

**Funny comment considering the CDC recently wrote an article clearly designed to dissuade doctors from using IV antibiotics on Lyme patients based on anecdotal evidence of 5 patients:**   https://madisonarealymesupportgroup.com/2017/06/23/no-bias-in-mmwr-for-any-other-infectious-disease-requiring-iv-antibiotics-except-for-lyme/

Cigna and Anthem said they don’t talk about pending litigation. The other insurers did not immediately respond Tuesday to emailed requests for comment.

The defendant medical doctors are Gary P. Wormser, Raymond J. Dattwyler, Eugene Shapiro, John J. Halperin, Robert B. Nadelman, Leonard Sigal and Allen Steere.

___________________

**Comment**

This is the inevitable outcome of ignoring and mistreating people for decades.  This is not the only lawsuit brewing and I predict much more to come.  People in Lyme-land are frustrated, suffering, and fed up.

https://madisonarealymesupportgroup.com/2017/09/25/speaking-of-fake-science-fifty-seven-million-anti-trust-lawsuit-against-cdc-lyme-tests/  An unprecedented anti-trust law suit of $57 million is being prepared against the CDC. They are accused of deliberately suppressing the use of an accurate DNA direct diagnostics for Lyme disease.

https://madisonarealymesupportgroup.com/2017/10/13/1st-officially-recognized-report-on-violations-of-lyme-patients-human-rights-is-released-updating-borreliosis-diagnostic-codes/  Human rights violation has been reported to the U.N. regarding the treatment of Lyme patients.  https://madisonarealymesupportgroup.com/2017/11/14/thayer-interview-commentary-on-tick-borne-disease-working-group/

Thayer Interview & Commentary on Tick-borne Disease Working Group

//www.dailymotion.com/embed/video/x691rok“>

Approx. 9 Min.

Monte Skall, executive director of NatCapLyme, interviews Jenna Luche-Thayer – ILADS 12-11-2017

§ discusses some of the concerns related to the newly forming ‘Working Group for Tick-Borne Diseases’ being implemented under the 21st Century Cures Acts

§ presents some of the impact of the work by the Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes

To summarize, the following critical information is ON RECORD AT THE UNITED NATIONS:

( I.) Ten human rights violations against Lyme borreliosis (LB) or Lyme disease patients.

Human rights violations of Lyme and relapsing fever borreliosis patients include policies recommending practices that:

1. prevent proper diagnosis and treatment for many patients
2. promote discrimination based on illness manifestations
3. misapply defunct somatic diagnosis to deny medical care**
4. obstruct treatments based on illness manifestations
5. promote discrimination based on financial status
6. support attacks on human rights defenders —including medical practitioners, scientists and researchers who act on behalf of this vulnerable patient group
7. restrict information regarding treatment options
8. routinely exclude key stakeholders from decision-making venues —making them invisible to policy makers, economists and practitioners and researchers
9. sick children under treatment are forcibly removed from their parents
10. in certain countries, there have been alarming cases where euthanasia is offered in place of treatments that have meet internationally accepted standards —such treatments are obstructed and denied

**MUS has been repudiated by the APA and removed from the DSM.

( II.) Hundreds of peer reviewed publications identifying many previously ignored, serious and potentially fatal complications from LB are on record at the UN:

Congenital Lyme disease, persistent infection, Borrelial lymphocytoma, Granuloma annulare, morphea, localized scleroderma, lichen sclerosis and atrophicus, Lyme meningitis, Lyme nephritis, Lyme hepatitis, Lyme myositis, Lyme aortic aneurysm, coronary artery aneurysm, late Lyme endocarditis, Lyme carditis, Late Lyme neuritis or neuropathy, Meningovascular and Neuroborreliosis – with cerebral infarcts, Intracranial aneurysm, Lyme Parkinsonism, Late Lyme meningoencephalitis or meningomyelo-encephalitis, Atrophic form of Lyme meningoencephalitis with dementia and subacute presenile dementia, Neuropsychiatric manifestations, late Lyme disease of liver and other viscera, late Lyme disease of kidney and ureter, late Lyme disease of Bronchus and lung and seronegative and Latent Lyme disease, unspecified.

( III.) Tens of thousands of chronic LB patients have been successfully treated with longer term care that meets internationally accepted standards … so that they may live, have a decent quality of life and be productive.

https://www.linkedin.com/pulse/commentary-21st-century-cures-act-working-group-lyme-luche-thayer/  by Jenna Luche-Thayer, Nov. 14, 2017

Commentary: 21st Century Cures Act ‘Working Group for Tick-Borne Diseases’ & Lyme Patient Human Rights

Dear Friends,

Dr. Richard Wolitski, Director of the HHS Office responsible for the 21st Century Cures Act Tick-borne Disease Working Group, addressed participants at the International Lyme and Associated Diseases Society (ILADS) annual scientific conference, held in Boston November 2017.

During his presentation, Dr. Wolitski outlined the Working Group’s ‘plan for dialogue with the larger community, operating procedures and goals’. Based on my experience with federal government, here follow some observations on the subject.

Tick-borne Disease Working Group

Transparency, Representation and Accountability Concerns

As I understood Dr. Wolitski, the plans and procedures are viable regarding the main Working Group. I say this because there will be some members on the Working Group who recognize chronic and complicated cases of Lyme.

However, it is by no means a fair representation from the perspective of the human rights abuse on record at the United Nations (UN). Skills to represent and integrate this record of human rights abuse should be part of the Working Group’s capacity.

According to Dr. Wolitski, the subcommittees will be made up of the ‘true experts’ who will then forward their recommendations for review by the Working Group. Therefore, the undermining of the somewhat fair representation of the main Working Group can be easily achieved due to the lack of required representation and transparency that may shape the multiple ‘subcommittees’.

According to Dr. Wolitski, the true experts will work on the various subject-specific items listed on the Working Group’s agenda. In other words, it will be the sub-committees that do the ‘expert reviews’ of the diagnostic tests, the guidelines and the science informing the Working Group’s decisions.

In this case, the subcommittees will have significant power to shape the outcomes of the Working Group —for example, a strong bias can come out of any one of these subcommittees leaving no ‘expert-researched’ alternatives for the Working Group to discuss. In this case, the Working Group may feel pressure to choose from ideas that are biased and opinion-based rather than relevant and diverse ideas. For example, choose between similar opinions A1, A2 and A3 rather than the criteria that is met by A, B, and C.

Regarding transparency, the Working Group meetings are to be videoed and probably live-streamed. In contrast, Dr. Wolitski said that the subgroups meetings’ minutes and discussions might not be videoed or shared … with either the Working Group or the public. Dr. Wolitski indicated that costs may be the reason for this lack of transparency.

This lack of transparency on the subcommittees is very concerning, particularly given:

§ there is no requirement to have representation of patient realities with persistent and complicated forms of LB on the subcommittees

§ the continued ignoring or suppression by the CDC of the hundreds of peer reviewed publications that describe the many serious and potentially fatal complications caused by LB

§ the CDC’s impunity with regards to breach of federal law —breaches include: collusion with and preferential promotion of one medical society’s outdated LB guidelines and attacks on viable diagnostic technologies that compete with patents of (unreliable) diagnostics held by CDC officials

§ the NIH’s impunity with regards to formally filed complaints that show inexcusable breaches in research ethics —breaches include: allowing certain grantees to misuse over 30 million dollars to support publications that fail all grant objectives and are filled with slander, slurs and defamation such as Lyme patients and their human rights defenders are dangerous, anti-science, nefarious, to be pitied, delusional, promoters of fake news, undeserving of engagement with policy makers and undeserving of medical treatment for persistent infection

Change

I have participated in a number of federal working groups —some have been very task oriented to address a situation… and others are formed more to ‘demonstrate political attention to a subject’ but don’t necessarily intend to change a situation. I have also participated in federal Working Groups that shared both kinds of objectives.

I have seen federal Working Groups set changes in motion, however, I can honestly say I have never seen a federal Working Group change reality. Changing reality requires many other state actors, political will, public support and agreement by special interests who were benefiting from the situation.

Furthermore, in my experience change does not occur when marginalized and abused people wait for others to draft their future.

Change happens when it is demanded — widespread public understanding and opinion must shift, almost every political and legal mechanism must be challenged and then used to correct injustice, and those responsible for and benefiting from the related human rights abuses are named, shamed and removed from positions of influence.

In the next few days, I will be posting a video named Addressing Systemic Obstacles in the Borreliosis Pandemic. This video shows the full presentation given to an international audience of over 700 medical and scientific professionals concerned with the Lyme and relapsing fever borreliosis pandemic and other tick-borne diseases at the Boston ILADS Conference. Every one of us concerned with this pandemic can use the information in this video to make change. Its content can help to require accountability from our government officials, elected officials, legal systems and medical systems.

Jenna Luche-Thayer