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Open Letter to Governors & Congressmen in Lyme Endemic Areas

The letter in the link above was written by microbiologist Tom Grier, who is director of pathology studies for the Dr. Paul H. Duray Pathology Fellowship.

In it, he explains why Lyme disease is so confusing, what the medical experts got wrong, and the following untrue facts have been disseminated by the IDSA, CC, NIH, Yale, Harvard, SUNY, and Mayo Clinics for decades:

Only blacked-legged ticks transmit Lyme
Lyme is not congenital
Lyme is not intracellular
Lyme stays in the blood and doesn’t enter the brain
Elisa tests are 99% accurate
Lyme does not persist beyond 28 days of antibiotics
Lyme is mainly an arthritic disease
Lyme is mainly found in the NE USA
The Lymerix vaccine had no side effects and was pulled because of anti-vaxx hysteria

Grier also has more than 100 references and photos proving pathogen persistence after antibiotic treatment.

Here’s 700 references demonstrating pathogen persistence: Peer-Reviewed Evidence of Persistence of Lyme:MSIDS copy

Here is documentation proving the conflicts of interests: ConflictReport

Grier’s letter takes on exactly what I was referring to when I wrote my comment about this article: https://madisonarealymesupportgroup.com/2019/08/24/its-time-to-get-serious-about-tick-borne-diseases/ If we are truly going to “get serious” about this pandemic, then we need to be concerned about what type of research is being funded. Right now there is a Pied Piper pushing a climate change agenda with research. Current tick research has already proven it a mute point and has even revealed faulty, biased research pushing an ideology that doesn’t pan out: https://madisonarealymesupportgroup.com/2019/06/17/ontario-public-health-officials-called-out-on-shoddy-biased-research-utilizing-an-erroneous-climate-change-model-to-program-a-futuristic-tick-problem/ This type of research is diverting dollars from neglected areas that demand answers such as accurate testing and diagnostics as well as transmission studies and effective treatments.

Category:

Activism, Lyme, Ticks, Treatment

It’s Time to Get Serious About Tick-Borne Diseases

https://blogs.scientificamerican.com/observations/its-time-to-get-serious-about-tick-borne-diseases/

By Mary Beth Pfeiffer on August 20, 2019

It’s Time to Get Serious about Tick-Borne Diseases

The U.S. vanquished malaria and beat back AIDS, but Lyme and other illnesses are raging unchecked

In the article in the above link, the author compares the treatment of Lyme/MSIDS patients with how those with AIDS were treated in the 80’s. She notes that patients with tick-borne diseases are dismissed similarly to how AIDS patients were, and are labeled anti-science, and are summarily denied insurance reimbursement. The author also compares the fact there are over 11,500 studies on AIDS compared to the 55 for Lyme.

West Nile virus, which currently infects about 2,000 people annually in the U.S. received $42 million from the U.S. National Institutes of Health
Lyme disease, which has 20 times the number of reported cases, got half as much

Evidently that number hasn’t budged in a decade.

She then aptly points out:

Zika, another mosquito-borne virus infecting just seven U.S. people in 2017, obtained $1.1 billion from Congress
Lyme, admittedly underreported, yet estimated to be potentially 427,000 new cases per year, received just $90 per new case from the NIH and $35 per new case from the CDC compared to $53,571 per new case of HIV/AIDS from the NIH and $14,054 per new case of HIV/AIDS from the CDC according to The Tick borne disease working group (TBDWG). The report states federal funding for Lyme disease has failed to increase as the problem has grown. https://undark.org/2018/09/06/lyme-research-funding/

Unfortunately, the author erroneously states that the lone star tick has migrated due to the climate warming; however, research has shown warmer winters are actually lethal to ticks and that ticks are extremely eco-adaptive and equipped for survival: https://madisonarealymesupportgroup.com/2018/08/13/study-shows-lyme-not-propelled-by-climate-change/

Please be aware the author of the article is selling her own book about climate change and Lyme.

Independent research has shown that birds and photoperiod are behind the movement of ticks: https://madisonarealymesupportgroup.com/2018/11/07/ticks-on-the-move-due-to-migrating-birds-and-photoperiod-not-climate-change/ This fact demonstrates why tropical ticks are found in Canada and Canadian ticks are found in the topics. They didn’t walk here because the weather was nicer.

I agree whole-heartedly with the author that precious time has been wasted and that research funding is “paltry and static.”

I think we would disagree; however, on how research dollars should be spent. If we are to truly “get serious,” we need to admit that the statically paltry research dollars need to go toward issues that directly affect patient well-being. I say, “NO MORE” funding on climate data which has not and will not help suffering Lyme/MSIDS patients. We need to start over with a blank slate. This complex illness is NOT what we’ve been told it is. There is much indicating it’s a STD, is spread congenitally, and potentially by other insects. We still don’t have accurate testing that picks up ALL pathogens involved. We still don’t have adequate treatment. And, we still don’t have a means of paying for treatment. There are so many other important issues that haven’t been addressed in over 40 years when the initial outbreak happened.

If we are truly serious, we need to care where the research dollars go.

https://madisonarealymesupportgroup.com/2019/08/13/lyme-disease-the-cdcs-greatest-coverup-what-they-dont-want-you-to-know/

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

https://madisonarealymesupportgroup.com/2019/07/22/lyme-disease-medical-myopia-the-hidden-global-pandemic/

https://madisonarealymesupportgroup.com/2019/08/01/why-we-need-to-stop-treating-lyme-disease-like-a-typical-infectious-disease/

Category:

Activism, Lyme, Ticks

“Mommy, I Just Want To Die:” Mother Recalls Daughter’s Fight Against Lyme Disease

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

“Mommy, I just want to die:” Mother recalls daughter’s fight against Lyme disease

AUG 21, 2019 —

The 3rd letter below addressed to Cynthia L. Sears, MD, FIDSA, President of the IDSA highlights yet another example how Lyme is “destroying lives, ending careers while leaving its victim in financial ruin.”

#1. It’s time to recognize that we need an entirely different approach; anything less is inhumane

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24913464

#2. IDSA treatment guideline has been identified as a “predatory device”

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24957930

Lyme Bumper Stickers (Public Service Announcement)
https://www.ebay.com/itm/123659578861

——– Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: csears@jhmi.edu
Cc: PracticeGuidelines@idsociety.org, tickbornedisease@hhs.gov, chris.smith@mail.house.gov, (88 Undisclosed recipients)
Date: August 20, 2019 at 9:22 AM
Subject: ‘Mommy, I just want to die:’ Mother recalls daughter’s fight against Lyme disease

On Aug 17, 2019 Carl Tuttle wrote: “I have 1,100 pages of comments describing a disease that is destroying lives, ending careers while leaving its victim in financial ruin. This PDF file is evidence that the Infectious Diseases Society of America has grossly misrepresented the disease and has left the horribly disabled to fend for themselves when the one-size-fits-all treatment guideline fails.”

Aug 20, 2019

IDSA
1300 Wilson Boulevard
Suite 300
Arlington, VA 22209
Attn: Cynthia L. Sears, MD, FIDSA, President

Re: Draft Lyme Disease Guidelines Public Comment

Dear Dr. Sears,

We can add the following article to the growing number of patients describing a disease that is “destroying lives, ending careers while leaving its victim in financial ruin.”

August 20, 2019

‘Mommy, I just want to die:’ Mother recalls daughter’s fight against Lyme disease

By Heather Schlitz, AccuWeather staff writer

https://www.accuweather.com/en/weather-news/mommy-i-just-want-to-die-mother-recalls-daughters-fight-against-lyme-disease/70009099

Excerpt:

Though Nicole’s doctors prescribed her a year’s worth of antibiotics that Jennifer said saved her daughter’s life, allowing her to go to college, become a nurse and later, a mother of three kids, Auwaerter is skeptical that long-term antibiotics benefit patients with post-traumatic Lyme disease syndrome.

The Lecrones emptied their bank accounts to pay for the uninsured doctor’s visits and to keep injecting $5,000-a-month Rocephin, an antibiotic, into Nicole’s IV. They lost their house and 401(k). Jennifer’s husband drove a truck for 15 hours a day. Jennifer’s oldest daughter, a high school student and varsity soccer player, gave her mom the paychecks she earned from working part-time at Subway and told her mom to use it to buy groceries and pay bills. The family struggled to function as Nicole languished in bed.

__________________

Dr. Sears…. This patient experience is happening all across America and the IDSA is 100% responsible for the mishandling of this devastating disease misclassifying it as “hard to catch and easily treated.”

What is the motivation for downplaying the severity of Lyme disease Dr. Sears?

A response to this inquiry is requested.

Carl Tuttle

Lyme Endemic Hudson, NH

____________________

**Comment**

We can add the following tragedy along with countless others who have died due to this dreadful disease(s): https://madisonarealymesupportgroup.com/2019/08/20/wisconsin-girl-loses-battle-with-lyme-disease/

Please see Lyme Activist Lisa Hilton’s Lyme Memorial: http://whatislyme.com/rip-lyme-friends-memorial/

Heartbreaking doesn’t even express….

Category:

Activism, Lyme, Uncategorized

Ad Hoc Patient and Physician Coalition From Around the World Reject Newly Proposed IDSA Guidelines

https://canlyme.com/2019/08/20/the-ad-hoc-patient-and-physician-coalition-from-around-the-world-reject-newly-proposed-idsa-guidelines/

The Ad Hoc Patient and Physician Coalition Comments On the IDSA Proposed Lyme Guidelines

By Canlyme

“About the Ad Hoc Patient and Physician Coalition: The Ad Hoc Patient and Physician Coalition consists of patients and physicians who are concerned that the proposed Lyme disease guidelines of the Infectious Diseases Society of America (IDSA), American Academy of Neurology (AAN), and American College of Rheumatology (ACR) will further restrict access to care and harm patients by leaving them undiagnosed and undertreated.”

The IDSA guidelines are used by countries throughout the world and these countries presume proper ethics in science and medicine were followed in the creation of those guidelines. They were not, and the rebuke of the newly proposed IDSA guidelines is endorsed by Lyme disease professional and stakeholder organizations from around the world, including the Canadian Lyme Disease Foundation.

The IDSA uses very similar tactics to the tobacco lobby in misrepresenting facts, hiding evidence, pruning research to present only that which supports their position (mostly citing their own members), and creating a false discussion within the medical community regarding patients and their experts being anti-science or pseudo-scientists. Conflicts of interest are understated or not reported. Drug companies (drugs inappropriately prescribed to ‘manage’ symptoms), and medical device manufacturers (joint replacement, valve replacement, etc) appear to be the ultimate beneficiaries of keeping people sick while not acknowledging the true cause, and the fix.

Collectively and internationally we are asking our legislators, the United Nations and the World health Organization to intervene and stop this monopolistic control of a disease that has reached pandemic proportions, all under the control of the IDSA/US CDC over several decades.

This matter was presented to the United Nations in June of 2018 as a human rights abuse issue, denial of access to care.

Read full text
List of global co-signing organizations

Category:

Activism, Lyme

Lyme Disease Is Baffling, Even To Experts

https://www.theatlantic.com/magazine/archive/2019/09/life-with-lyme/594736/

Lyme Disease Is Baffling, Even to Experts

But new insights are at last accumulating.

The September 2019 issue by Meghan O’Rourke gives her narrative about the difficulty in getting diagnosed and treated for Lyme disease. It also shows clearly the Lyme Wars in action as she questions her own sanity and symptoms after talking with Dr. Allen Steere.

Go to link for entire article.

_________________

**Comment**

Overall – great article.

A few points:

Despite the CDC’s opinion of patients, “the proof is in the pudding.” If your test results show antibodies, you begin treatment and feel worse before you feel better….what more can be said? This is a clinical diagnosis.
Nobody’s denying there can be other factors at play. No – not everything is Lyme – but Lyme CAN be anything.
The climate is a mute point regarding tick borne illness: https://madisonarealymesupportgroup.com/2018/08/13/study-shows-lyme-not-propelled-by-climate-change/, and https://madisonarealymesupportgroup.com/2018/11/07/ticks-on-the-move-due-to-migrating-birds-and-photoperiod-not-climate-change/
For anyone versed in Tick-borne illness, the author has a hallmark case. Not remembering people you should know, having electric shocks all over your body, as well as burning, pain, numbness, severe exhaustion, vertigo, joint pain, tremors, headaches, brain fog – all of which wax and wane….remind me of Dr. Jemsek’s quote: “You either have 20 diseases or you have Lyme disease.”
It’s a good thing she chose to listen to Dr. Horowitz or things would be very bad for this author right now.
Please remember that Steere is the one who created the entire paradigm keeping patients from getting effective treatment for this 40 years ago. https://sites.google.com/site/jerryleonard999/home/allen-steere-psychopath-at-large In short, Steere is a pharmaceuticals consultant, influential researcher and co-author of the IDSA Lyme disease guidelines, and a CDC/EIS biowarfare officer which is chartered with responding to biowarfare agents released on U.S. soil, as well as developing vaccines against them. He also worked for the private Yale Corporation that worked closely with the biowarfare tick lab in Connecticut. Working with Yale, Steere personally oversaw the Lymerix vaccine trials and associated tests run by the company that licensed the vaccine from his previous employer. Steere personally testifies against doctors who who treat chronic Lyme. Why a patient would ever entertain a word this man says defies logic.

Category:

Activism, Lyme, Ticks, Treatment

Madison Area Lyme Support Group

Archive for the ‘Activism’ Category

Open Letter to Governors & Congressmen in Lyme Endemic Areas

Grier also has more than 100 references and photos proving pathogen persistence after antibiotic treatment.

It’s Time to Get Serious About Tick-Borne Diseases

It’s Time to Get Serious about Tick-Borne Diseases

The U.S. vanquished malaria and beat back AIDS, but Lyme and other illnesses are raging unchecked

Evidently that number hasn’t budged in a decade.

Please be aware the author of the article is selling her own book about climate change and Lyme.

I agree whole-heartedly with the author that precious time has been wasted and that research funding is “paltry and static.”

If we are truly serious, we need to care where the research dollars go.

“Mommy, I Just Want To Die:” Mother Recalls Daughter’s Fight Against Lyme Disease

“Mommy, I just want to die:” Mother recalls daughter’s fight against Lyme disease

‘Mommy, I just want to die:’ Mother recalls daughter’s fight against Lyme disease

Heartbreaking doesn’t even express….

Ad Hoc Patient and Physician Coalition From Around the World Reject Newly Proposed IDSA Guidelines

The Ad Hoc Patient and Physician Coalition Comments On the IDSA Proposed Lyme Guidelines

Lyme Disease Is Baffling, Even To Experts

Lyme Disease Is Baffling, Even to Experts

But new insights are at last accumulating.

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