Archive for the ‘Lyme’ Category

Occupational Risk & Zoonotic Diseases

https://www.galaxydx.com/occupational-risk-and-zoonotic-diseases-like-lyme/

For Lyme Disease Awareness Month: Occupational Risk and Zoonotic Diseases

 

Video Showing Questing Ticks in the Middle of the Sidewalk

https://www.facebook.com/BayAreaLymeFoundation/videos/1796606113818173/?t=45

May 10 at 11:13 AM

Please click on link above to watch a short video.  This PSA from Lia Gaertner & Shanti the dog show questing ticks in the middle of the sidewalk, demonstrating the need to be diligent with tick checks as well as spraying clothes/shoes with permethrin when out doors.

Ticks are being found in wide-open spaces now.  No need to go deep in the woods or shrubby areas to find them.

For more on prevention:  https://madisonarealymesupportgroup.com/2019/04/12/tick-prevention-2019/

https://madisonarealymesupportgroup.com/2017/05/11/tick-prevention-and-removal-2017/

https://madisonarealymesupportgroup.com/2018/10/01/tickology-video-series-everything-you-want-to-know-about-ticks-prevention/

And remember, it’s highly likely that the black legged tick isn’t the sole perp:  https://madisonarealymesupportgroup.com/2019/04/02/transmission-of-lyme-disease-lida-mattman-phd/

 

 

 

Why Aren’t Departments of Health Surveilling Disabled Lyme Patients & Reporting Back to the CDC About the Seriousness of the Problem?

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24570781?

“Let’s Talk Ticks” at Litchfield’s Public Library

MAY 17, 2019 — 

Please see the letter below addressed to the New Hampshire Department of Health and Human Services regarding a local presentation at Litchfield’s Public Library. The links provided are made available through my personal Dropbox storage area for use in future legislation/litigation.

The Departments of Health in each state across America are supposed to be “responsible for the health, safety and well-being of their citizens” but receive their marching orders from the CDC so they have been little more than an extension of the CDC’s failure to escalate Lyme disease to Highest Alert.

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

WAKE UP AMERICA!

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: abigail.mathewson@dhhs.nh.gov
Cc: Howard.Moffett@leg.state.nh.us, amknh78@gmail.com, Tom.Sherman@leg.state.nh.us, Martha.FullerClark@leg.state.nh.us, Jeb.Bradley@leg.state.nh.us, James.Gray@leg.state.nh.us, Shannon.Chandley@leg.state.nh.us, Doug.Marino@leg.state.nh.us, kathie@kathiefife.com, Polly.Campion@leg.state.nh.us, jc.salloway@unh.edu, wmarshmd@gmail.com, nhbidc@dhhs.nh.gov, saunderson.george@gmail.com, electdavidkarrick@gmail.com, cmcmahon55@gmail.com, james.potter@nhms.org, michael.padmore@nhms.org, jeffrey.meyers@dhhs.nh.gov, cutler_library@comcast.net, brett.giroir@hhs.gov, tickbornedisease@hhs.gov
Date: May 12, 2019 at 4:24 PM
Subject: “Let’s Talk Ticks” at Litchfield’s Public Library

May 12, 2019

New Hampshire Department of Health and Human Services
29 Hazen Drive
State Public Health Agency
Concord, NH 03301
Attn: Abigail Mathewson DVM, MPH, Zoonotic Disease

Dear Abigail,

On May 10, 2019 I and a few other individuals attended your presentation “Let’s Talk Ticks” at Litchfield’s public library. During this presentation the seriousness of Lyme disease was brought up and you had mentioned sudden cardiac deaths which as you know can strike without warning signs. All in attendance agreed that Lyme disease is a life-altering/life-threatening infection and I believe it was the librarian who mentioned the case of a mother and daughter residing in Litchfield severely disabled from the disease. You actually commented that you were perplexed as to why the CDC has handled the disease in the manner that they have.

After the meeting I emailed a number of documents that included:

1. Deaths from Lyme Disease

https://www.dropbox.com/s/eo794dx7zspc1ln/Ld%20deaths.doc?dl=0

2. Congenital Transmission of Lyme

https://www.dropbox.com/s/z10em0szgpm8bll/Congenital%20Transmission%20of%20Lyme%202015.doc?dl=0

3. Seronegativity in Lyme borreliosis and Other Spirochetal Infections

https://www.dropbox.com/s/3d6m45jzlhhwalu/Seronegativity.pdf?dl=0

4. Peer Reviewed Evidence of Persistence of Lyme DiseaseSpirochete Borrelia burgdorferi and Tick-Borne Diseases (700 Articles)

https://www.dropbox.com/s/n09sk90eo6xz7ua/700%20articles%20LYME%20EvidenceofPersistence-V2.pdf?dl=0

5. Letter to past CDC Director Brenda Fitzgerald

https://www.dropbox.com/s/xaul84dqmqgbre0/Brenda%20Fitzgerald%20MD%20Director%20CDC.docx?dl=0

6. DNA Sequencing Reveals Another Novel Lyme Disease Spirochete in Blood of Boy Diagnosed with Psychiatric Disorders, Reports Connecticut Pathologist Sin Hang Lee, M.D.

https://www.businesswire.com/news/home/20160427006073/en/DNA-Sequencing

Documents handed to you at the end of the presentation:

1. Dr. David Volkman’s personal letter to past CDC Director Tom Frieden

https://www.dropbox.com/s/sl5x3gzguowpj6n/Volkman%20letter%20to%20Frieden.doc?dl=0

2. Quest Diagnostics Western blot example

https://www.dropbox.com/s/ppus0unm0j2oiff/Western%20Blot.pdf?dl=0

3. Borrelia were not killed by doxycycline alone

https://www.dropbox.com/s/e8axeoy7ow6ox8j/Borrelia%20were%20not%20killed%20by%20doxycycline%20alone.docx?dl=0

4. NH Tick Study from UMass Amherst

https://www.dropbox.com/s/kvxnp7tffoy4yas/NH%20Tick%20StudyText%20added.doc?dl=0

My email to you dated May 11 detailed the activities of Dr. Gary Wormser of New York Medical College who has been fixated on the acute stage of Lyme disease while hiding the late stage horribly disabled Lyme patient population:

Email to Abigail.Mathewson May 11 2019

https://www.dropbox.com/s/xmz0a1kfzb5yha9/Email%20to%20Abigail.Mathewson%20May%2011%202019.docx?dl=0

Post Treatment Lyme Disease Syndrome (PTLDS) after early treatment and untreated Lyme of months, years or decades are two entirely different disease states; the latter being ignored for three decades. Patients who have had a prolonged exposure to the pathogen are almost always incapacitated.

Purposely avoiding the advanced stage of disease hides the horribly disabled and anyone unable to see this is somewhat naive.

Untreated Lyme is destroying lives, ending careers while leaving the patient in financial ruin as reported by the disabled Lyme community for the past three decades. The absence of a bulls-eye rash after tick bite allows patients to progress to severe neurological disease instead of obtaining a prompt diagnosis and early treatment. It is well known that 20% of those who are treated early do not recover.

Examples:

A previously healthy cadet was found unfit for duty receiving a 100% service connected disability after discharged from active military service: (The cadet was 24yrs old)

1. Latent Lyme Disease Resulting in Chronic Arthritis and Early Career Termination in a United States Army Officer  (Published: 06 March 2019)

https://academic.oup.com/milmed/advance-article/doi/10.1093/milmed/usz026/5370051?searchresult=1

2. Nicole Malachowski: Unfit for Duty from Debilitating Tick-Borne Disease

http://cdmrp.army.mil/cwg/stories/2018/nicole_malachowski_profile

“Her medical retirement, however, was premature. At only 43 years old, she was deemed unfit for duty due to neurological damage from tick-borne illness.”

______________________

Abigail: You had mentioned the need for additional tick studies but the one completed by UMass Amherst already disclosed that 77% of ticks in the town of Litchfield were carrying Lyme disease. You also mentioned that surveillance personnel and funding was needed to complete these studies.

All due respect Abigail but why isn’t the New Hampshire Department of Health surveilling the disabled Lyme population and reporting back to the CDC as these numbers continue to grow. As you know, the CDC is estimating 329,000 new cases of Lyme this year and that number is five times the AIDS epidemic and twice as prevalent as breast cancer.

There is no short term cure for the Lyme patient who went months, years or decades before diagnosis as these patients are completely ignored and left to fend for themselves. There is high incidence of treatment failure for those prescribed the one-size-fits-all IDSA treatment recommendation.

Patient testimony is describing a disease that is destroying lives, ending careers while leaving its victim in financial ruin so why is Lyme disease still considered a low-risk and non-urgent health threat? There are no Public Service Announcements informing the public that you could become horribly disabled or die from Lyme disease. It’s time to escalate Lyme disease to Highest Alert and establish a Manhattan project to find a cure for all stages of disease.

Lyme disease is a public health disaster/crisis which has gone on for decades all under the watch of the New Hampshire Department of Health and Human Services which is supposed to be “responsible for the health, safety and well-being of the citizens of New Hampshire.”

We all know that we’re dealing with an antibiotic resistant/tolerant superbug as the evidence is overwhelming found in 700 peer reviewed publications. An astute fifth grader with access to PubMed could find these references but for some unknown reason our public health officials at the Centers for Disease Control has turned a blind eye to this science leaving the sick and disabled to fend for ourselves.

As spokesperson for the horribly disabled Lyme community I am challenging the New Hampshire Department of Health and Human Services to demand an upgrade of Lyme disease to Highest Alert by the US Centers for Disease Control in order to increase funding to the threat level Lyme disease commands as lives continue to be lost to this life-altering/life-threatening devastating disease. Please escalate this appeal to the Office of the Commissioner.

A prompt response to this inquiry is requested.

Respectfully submitted,

Carl Tuttle

Hudson, NH

Lyme Disease: Call for a “Manhattan Project” to Combat the Epidemic
Raphael B. Stricker, Lorraine Johnson
Published: January 02, 2014DOI: 10.1371/journal.ppat.100379

http://www.plospathogens.org/article/info:doi/10.1371/journal.ppat.1003796

Cc: -The New Hampshire Medical Society Advisory Council on Tick and Other Insect Borne Diseases

-The Tick Borne Disease Working Group

-ADM Brett P. Giroir, M.D., Assistant Secretary for Health

-Rep. Howard Moffett sponsor of  House Bill 490

https://legiscan.com/NH/bill/HB490/2019

___________________

**Comment**

A few points:

  1. The post treatment Lyme disease syndrome (PTLDS) group that everyone keeps saying is 10-20% doesn’t accurately describe the problem. Microbiologist Holly Ahern takes this on and states it’s more like 60% of patients who go on to have persistent/chronic symptoms:  https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/
  2. It’s highly likely that the black-legged tick isn’t the sole perp and much more work needs to be done on transmission:  https://madisonarealymesupportgroup.com/2019/04/02/transmission-of-lyme-disease-lida-mattman-phd/  and https://madisonarealymesupportgroup.com/2017/02/24/pcos-lyme-my-story/  These links reveals numerous transmission probabilities including sexual, blood transfusions, other bugs, mucus membranes, via breast milk and much, much more. This research is screaming to be done.  People need to understand risks.
  3. We must NOT allow research dollars to be diverted to “climate change.” Independent Canadian researcher, John Scott, has shown that tick and pathogen proliferation have NOTHING to do with the climate:  https://madisonarealymesupportgroup.com/2018/11/07/ticks-on-the-move-due-to-migrating-birds-and-photoperiod-not-climate-change/  More climate date is NOT going to help sick patients.  Transmission studies, research for better testing and treatment, and the acknowledgment that this can cause persistent debilitating symptoms is what we need along with recognition by the CDC/NIH/IDSA that this is a legitimate disease(s) which is reflected in scientific literature, updated guidelines, and proper medical education for health professionals.  This in turn will change the status with insurance companies who are currently hiding behind antiquated and unscientific 2006 CDC “guidelines” that have ruled like an iron curtain for over 40 years, refusing coverage to very sick patients.
  4. We also need our government to come clean:  https://madisonarealymesupportgroup.com/2019/05/15/is-lyme-disease-a-bioweapons-experiment-gone-bad/

 

 

 

 

Buy 1 Get 1 Free Sale of “Under Our Skin,” & “Emergence” – Best Documentary on Lyme Disease

https://underourskin.com/store

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Under Our Skin and Emergence

BOGO Blowout – Buy One DVD Get One FREE!

May is Lyme Awareness Month, and we’ve been on the scene and behind the scenes as the patient revolution that we helped kickstart continues to roll out.  From rallies in Congress, to federal lawsuits, to new bombshell books, things are heating up.  In order to keep-up the pressure and help spread awareness, we’re donating one free DVD for every DVD purchased.  Use these free DVDs to help educate friends, family, physicians and policymakers.  Buy one get one free; buy two, get two free, and so on.  We’ll automatically double your order; the tab’s on us!  And if you have a great idea to use our DVDs to educate on a grand scale, we can donate in bulk – just let us know your idea.

Act now – offer ends May 31st!

___________________

**Comment**

For those of you who follow this website, you realize I never push or sell anything. By the time patients find this site they’ve been chewed up and spit out by the medical establishment – many with a serious fear of those in white coats.

My promotion of “Under Our Skin” and “Emergence” is two fold:

  1. I might be dead if I hadn’t watched them as I diagnosed myself and my husband after viewing them.
  2. This is one of the absolute best ways to educate people.

In these ground breaking videos you will see a multitude of people explain how they were misdiagnosed with everything from MS, Lupus, fibro, ALS, to depression, but they were all infected with Lyme/MSIDS.  

Investigative journalist Kris Newby also exposes that a majority of people sitting on the CDC Lyme guidelines panel have rife conflicts of interest – leading us to where we are today, which is no where.

“Emergence” is particularly encouraging to patients who are struggling through treatment.  You get to witness many regain their health.  Proper treatment is imperative and this documentary reveals that.  There is no greater encouragement than seeing others obtain their health.

The Financial Burden of Lyme Disease Caused This Woman To Take Action

https://www.doctoroz.com/article/financial-burden-lyme-disease-caused-woman-take-action

The Financial Burden of Lyme Disease Caused This Woman to Take Action

Learn about one woman’s personal struggle with this debilitating disease.
By Jasmin Boyce
Brandi Dean, Lyme disease treatment

After serving four years in the U.S. Coast Guard, Brandi Dean was used to tackling tough missions head-on. But in 2011, she faced one that was largely out of her control: battling Lyme disease. In October 2010, Brandi was living in Boston and pregnant with her son Finn when she was bitten by what she thought was a spider. It left a bruise “the size of a softball.” Even though it was alarming, she tried not to think much of it. Symptoms like vertigo, unsteadiness, and heart palpitations soon followed, but she just assumed they were a side effect of her pregnancy. Shortly after she gave birth, her symptoms began to intensify, and she ended up in the emergency room. There, Dean was diagnosed with Lyme disease, and it would end up changing the course of her life.

Dean received treatment for Lyme, but soon after finishing, her symptoms returned. They were so severe, it left Dean incapacitated for months at a time, inhibiting her ability to move her arms and legs and causing immense muscle and joint pain.

“The symptoms were far more severe than I had ever experienced… I told people it was like being tortured from the inside out,” she says. The physical pain was met with mental distress, as the disease pushed Dean to have severe anxiety and panic attacks. “I really think that the infection and inflammation affected my brain as well, because I felt like I was such a burden on everyone around me,” she says. “I lost hope that I was going to push through.”

During this time, she made countless appointments to try and find another solution for more treatment options. But instead of doctors diagnosing her with chronic Lyme and suggesting further treatment options, most of her appointments ended with misdiagnoses of anxiety or stress.

Though it’s estimated that there are nearly 330,000 new cases of Lyme disease each year in the United States, current diagnostics miss up to 60 percent of acute cases, according to the Bay Area Lyme Foundation. Dean was part of the latter percentage; medical professionals were unequipped to properly diagnose her symptoms, and frequently wrote them off as the side effects that come with raising small children.

“If I received the proper treatment from the beginning… I would not have had to suffer like I did years after that bite,” says Dean.

After learning first-hand that the treatment aid for chronic Lyme disease was few and far between, Dean decided to take matters into her own hands to not only help herself but help others as well. In 2015, she founded and developed The Dean Center for Tick Borne Illness, which serves as both a research program and specialized clinic to help with the emotional and financial burdens of chronic Lyme disease.

In 2016, her home state of Massachusetts officially mandated that insurance companies cover the long-term care of patients with Lyme disease. It was a step in the right direction, according to Dean, but this is not the case for insurance companies in all 50 states.

Based on both Dean’s personal treatment and information from The Dean Center for Tick Borne Illness, a typical week of IV antibiotics can cost upwards of $5,000, and that’s excluding other medical expenses, like in-home nursing care.

“The cost is just extraordinary and we’re fortunate that we had the resources to pay for that, but many patients don’t,” says Dean. “That’s why [The Dean Center for Tick Borne Illness] helps patients on a weekly basis who are losing their homes and taking on a huge amount of debt.”

Even though Dean founded the Center to help others, she still had a long personal battle ahead. In May 2016, she was bitten again by a tick carrying the virus and suffered with symptoms every day. This time, when searching for a solution, she turned her research overseas.

In August of 2017, she received hyperthermia treatments at Klinik St. Georg in Germany. Dean says that just one day after treatment, her difficulty breathing, chest pain, anxiety, numbness in her legs, and brain fog seemed to disappear immediately; she was even able to walk up a hill to see a castle in Austria. She lived virtually symptom-free for seven months after treatment, and to this day, she has infrequent and minor symptoms.

After recovering from the second tick bite, Dean began to incorporate exercises like yoga back into her routine. Though she hadn’t done a lot of cardio in a while, a trip to a Soul Cycle class with a friend opened a new chapter in Dean’s life and gave her a new idea for raising money for the Center.

“[Soul Cycle] was this message of strength, and hope, and it was so inspiring I left the class in tears and I remember thinking this would be a great place to bring our [Lyme] community together,” she says.

Dean believes that support systems are essential for those battling Lyme disease.

“That sense of compassion from [my] community really helped me pull through… I feel like I had lost the strength to pull through the difficult days and if it weren’t for the strength of my family and friends I don’t know if I’d be here today,” she says.

She has since created a Lyme disease fundraiser along with her friend and co-founder, Jill Fulginite. Partnering with Soul Cycle, Ride Out Lyme’s charity spinning classes raise funds for the “treatment, wellness and support programs for Lyme patients and their caregivers,” according to the fundraiser’s website. Ride Out Lyme’s next event will take place in New York City on May 19.

For more Dr. Oz wellness tips, recipes, and exclusive sneak peeks from The Dr. Oz Show, subscribe to the Dr. Oz newsletter.

___________________

**Comment**

Keep these stories coming.  Shout this to the world.  The tide will turn when enough people in positions of power are affected by this plague.  Lyme/MSIDS is causing homelessness, suicide, and outright misery and death.  It is not a simple case of fatigue and joint pain in a multitude of patients.