Archive for the ‘Activism’ Category

Fighting Lyme Disease in Maine – TV Report

https://www.wabi.tv/content/news/Part-One-Fighting-Lyme-Disease-511540782.html (News Video Here)

Part One: Fighting Lyme Disease

HERMON, Maine (WABI) – “For me, the month of May is awareness month and I will fight to my death to get awareness.”

Every day last month Regina Leonard posted something on Facebook about Lyme Disease.

“To get people to acknowledge it.”

She knows first hand the havoc the tick-borne illness can cause someone.

“It was three years ago in the fall that I got a call from the teachers that Cooper was not feeling well and he had this random rash all over his body.”

“I immediately noticed that he had a rash on his face and he had raccoon eyes and it was all red and blotchy,” said Erica Hake, a teacher at Hermon Elementary School.

Cooper was six at the time. His teachers at Hermon Elementary School contacted Regina when they saw the rash and knew something wasn’t right.

“My heart sank. I was just really worried about Cooper,” said Hake.

“The fact that they caught it and called me meant the world.”

Regina immediately took Cooper to walk-in care.

“We literally saw the rash spread before our eyes at the doctor’s office. Within eight hours my kid couldn’t walk on his own. His hands were curled in like a paraplegic. He stuttered when he spoke. He just screamed and cried in pain and for the next two and a half weeks it was like that. I was really scared. There was a moment I really thought my kid was going to die,” said Regina.

“I remember things like waking up in the middle of the night and feeling sick and I remember when I first got it, throwing up in the trash can,” said Cooper.

One of the most alarming factors is the Leonards never saw a tick on Cooper.

“Never, ever did I think it was a tick. I didn’t find a tick on him. I do tick checks. I thought I was being thorough.”

It’s been a hard road for Cooper. They were only given two weeks worth of antibiotics. Regina says when their doctor said Coop was cured three years ago and they were still dealing with symptoms, they turned to a doctor in New Hampshire friends of theirs had success with.

“He’s a homeopathic but he works in an integrated health facility combined with holistic therapy in order to treat this. I left there completely in tears because I felt like we had answers, I was listened to and that he was going to get some help.”

“I think it’s just quite devastating and quite unbelievable in this day in age that we don’t have a better handle on this,” said Constance “Happy” Dickey.

Happy Dickey is an RN and a past president of the non-profit, MaineLyme. She’s also had to pay out of pocket for her own Lyme Disease treatment.

“The treatment is treat the patient. If the patient is getting better continue treatment if the patient isn’t responding change it up and do something else.”

Happy, along with the other members of Maine Lyme, began working to educate others about Lyme and other tick-borne illnesses in 2010. She says while more and more people are becoming aware of the damage ticks can do, many are still not taking critical precautions at a time when the tick population is growing in Maine.

“This is an epidemic. And we need to prevent people, help people prevent illness and we’re just not doing it. I shouldn’t have to do this. This should be coming from the CDC. This should be part of the doctor’s tool box and it’s not. It’s pretty devastating.”

For Regina, she says when she found out her dog, Lionel had Lyme it was easier to treat and cure him than her son. Now, she says they’re hoping for a break from the medications and from the bills.

“Not only for Cooper to get a break but for the wallet because it’s been really expensive to pay for this out of pocket.”

She says it was worth every penny but hopes their story will possibly prevent other families from going down the same road.

“I’d like to gather every single tick and then cover the bucket in gasoline, light it on fire then put some dynamite next to it,” said Cooper.

_________________

**Comment**

Thank God for astute teachers!

“Happy” Dicky’s statement is too logical for mainstream medicine:

“The treatment is treat the patient. If the patient is getting better continue treatment if the patient isn’t responding change it up and do something else.”

You know things are bad when your dog gets better treatment than you do…

 

 

GOTCHA CALL TO ACTION Addressing the TBDWG

https://www.linkedin.com/pulse/gotcha-call-action-addressing-new-tick-borne-disease-working-bauer/

*2019 assessment of the Tick-Born disease Working Group and CALL TO ACTION*
*2019 assessment of the Tick-Born disease Working Group and CALL TO ACTION*

GOTCHA CALL TO ACTION addressing the new Tick-Borne Disease Working Group (TBDWG) 2019

Kristina Bauer
Yoga Mom, Wellness practitioner and LymeEducator
After attending the first TBDWG of 2019 on June 4th in D.C., it was apparent there needs to be a louder voice from the Lyme patient community.

I was encouraged at the Tick-Borne Disease Working Group meeting to write all concerns to the following email address, tickbornedisease@hhs.gov.

I BELIEVE in democracy, and in one new member this year. I was very impressed particularly with Commander Rebecca Bunnell, who is on the federal side.

She is a Senior Advisor at CMS (Medicare and Medicaid). I spent some time talking with her and she is genuinely pushing for a PATIENT CENTERED TBDWG! I believe she has a very powerful impact potential for patients.

This is, I believe where we need to focus as patients and activists. Once Medicare and Medicaid approve covering a treatment and recommended tests etc., the private sector (insurance!) usually will pick up and follow, historically. That’s our goal is better tests, treatment, and insurance coverage.

Here is a sample letter you’re welcome to copy, paste and share in your groups. Add your name at the bottom, take mine off, and email it off to the TBDWG.

DON’T UNDERESTIMATE WHAT YOUR IMPACT CAN HAVE! THINK ACTUP! from the AIDS fight for medical justice. Lyme advocates are involved, strategic and TOGETHER WE CAN do this!

—————————————————-

TO WHOM IT MAY CONCERN,

The Lyme and associated diseases community are pressing for a congressional hearing on the mishandling of Lyme disease of the leadership of NIAID, NIH, CDC and HHS.

We will continue our efforts from across the globe until our demands are met for quality diagnostics, guidelines for treatments that work, and insurance coverage for effective treatments.

We have organized information chronologically from when the CDC took over in the late 1980’s until current time. This revealed inadequate studies were at the source of ineffective guidelines to patient’s detriment and in contrast, to develop a vaccine.

We need funds for research on infection persistence, with special attention be given to drug studies that consider the following:

1.The unusually long replication cycle of the organism

2. Borrelia’s stationary growth pattern, which allows for the formation antibiotic tolerant persister cells, once the stationary phase is reached

3. The tropism of the organism

4. The varied abilities of medications to pass the blood-brain-barrier

5. The formation of biofilm colonies that prohibit medication accessibility

6. The ability of the organism to compromise the immune system, likely necessitating the complete eradication of the organism from the body

7. The non-cultivability of the organism, once it experiences, even a limited exposure to an antibiotic

Advocates around the world are outraged by the conflicts of interest allowed at the table so far, including and especially Dr. Shapiro. We now have almost 23,000 signatures on our change.org petition written by Dorothy Leland of Lymedisease.org requesting his removal from the TBDWG.

Lyme patients worldwide DEMAND he be removed immediately!

Electing him is no approach to a “fair and balanced” working group makeup. He has proven to be against patients’ needs year after year. Another assessment by Mrs. Leland is at this link https://www.lymedisease.org/shapiro-tbdwg/.

As a result of this groups history, public participation has been poor, and faith never established. Allowing IDSA to continue to keep their admission of Shapiro’s appointment on the Tick-Borne Disease Working Group two weeks prior to what the public saw violates your transparency goals outlined in your charter, among many other violations.

IDSA publicly made a shocking omission on their website that they disagree with the TBDWG recommendation to Congress for insurance coverage for Lyme patients. The TBDWG was formed for the patient group not IDSA, correct? This is blatant medical discrimination violating our dignity and human rights. Would they say this about a child with cancer?

We ask the following:

A congressional hearing on the mishandling of Lyme from 1980 to current.

IDSA trained Dr.’s should be denied a place at the table until they prove to incorporate a patient focus to reinforcing the medical human rights of Lyme patients. The WHO’s constitution states that every person has the RIGHT to their best attainable health.

It’s the obligation of the TBDWG to make that happen.

Every member on the TBDWG who has conflicts of interests need to step down, so the direction is squarely centered on the patients without a payday for players. All conflicts of interest of the TBDWG need to be fully disclosed and transparent to Congress and on public record.

We ask for a public announcement for the termination of the use of the term PTLD/PTLDS. It has no scientific backing and negates the user’s credentials immediately to the reader.

Lyme constitutes 80% of all Tick-borne diseases the CDC estimates, therefore Lyme should make up 80% of the subcommittees.

All pregnancies need tested for Tick-borne diseases right away, and ILADS guidelines the standard treatment allowed.

States need to require Doctors to be educated in Lyme and Tick-borne diseases before graduating medical school. It is shameful that didn’t happen out of the first meeting. AMA approved CME’s (Continuing Medical Education credits) offered at ILADEF.org need to become required immediately by all medical personnel.

We ask you protect our Dr.’s. No physician adhering to a reasonable protocol backed by peer reviewed studies should be under scrutiny or harassment by any medical board.

Dr Walker at meeting #9 posed the question,

“what caused the increase in Tick-born disease?”

The answer is in bioengineering the fertility, and force-feeding of pathogens to ticks admitted by government employee, Doctor Willy Burgdorfer for NIH. Per his own account and made public (BITTEN, by Kris Newby), this was the big turn for an increase in the tick population.

The government is responsible for fixing this epidemic today, starting with patients already infected.

Please respond to this email addressing my concerns outlined above and commit this to public record.

Respectfully,

Kristina Bauer, Texas Lyme Alliance and GOTCHA, Global Oversight for Transparency against Corruption in Healthcare Alliance

_________________

**Comment**

While I agree with Ms. Bauer on most points, I am concerned that many of these action points could backfire against patients and doctors.  It’s a very delicate situation.

Doctor protection laws have inadvertently put practitioners under the spotlight and they are being singled out and scrutinized more after the so called ‘protection’ than before it. Politics are often counter intuitive.

I’m concerned about the comment that 80% of the subcommittees should be singularly focused on Lyme disease. Many of the coinfections are not reportable diseases and there is absolutely no record of prevalence. In my opinion, the entire Lyme paradigm needs to shift from a singular entity into a far more complex, systemic illness often accompanied with other pathogens either directly transmitted by ticks OR that are reactivated via tick bite, vaccinations, or other assaults on the immune system.

In short, few have ‘just Lyme’ anymore.
Part of the current problem is the continued myopic definition of the disease.

Either Lyme has evolved into this complex monster, or it was always present yet under-appreciated. According to many ILADS trained doctors with decades of experience, coinfections weren’t as prevalent years ago as they are now. They admit it it used to be much simpler to treat.

Now, cases are extremely individual and complex.

This is where we can cut our nose off despite our face with legislation that continues to pigeon-hole this beast into something it’s not.

The longer I observe, the more I’m convinced we need to fund our own work to get to the bottom of the chronic/persistent issue as well as recognize concurrent infections, create proper testing that takes both these issues into account, find all the transmission modes, and effective treatments. Notice treatments is plural. The only box this fits into is Pandora’s.

The answers for some of these issues are going to be extremely individualistic. We should quit putting this into a 2-minute sound-bite and mandating a “specific” treatment to all or we will end up no better than we started.

Somehow we need to continue to allow Lyme-literate doctors to treat this appropriately without infringing upon their rights, while encouraging other doctors to become trained. The problem I see is we will never fit into a Western medicine paradigm and a 10-15 minute appointment. This complex disease is far too sticky. So, even if insurance covered it and mainstream medicine treated it, the entire formula wouldn’t work unless it’s a simple acute case. My first appointment with a LLMD was 90 minutes long and I filled out medical chronology going back to infancy. Do you seriously think medical monopolies are equipped for that kind of detail and introspection?

 

Live Interview with Lyme Activist Jenna Luche-Thayer on July 15, 2019

$Lyme Author, Jenna Luche-Thayer Interview

Live interview coming up on July 15, 2019 at 1:00pm EST

Click on link above to set your reminder “on” to hear this.

 

BBC Video ‘My Life is Dominated by Lyme Disease’

https://www.bbc.com/news/av/uk-scotland-48636858/my-life-is-dominated-by-lyme-disease  (Video Here)

June 17, 2109

‘My life is dominated by Lyme Disease’

One tiny tick under the skin can cause chronic illness but GPs can be slow to diagnose and to give treatment for Lyme Disease.

“Disclosure: Under The Skin” meets sufferers who feel let down by the health service and asks what more can be done to combat this debilitating disease.

The programme was aired on BBC One Scotland on Monday 17 June, 2019.

Steere Publications the Past & Today

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24727806?

Steere publications the past and today

JUN 20, 2019 —

Today’s letter to Dr. Fauci as a follow-up to an earlier letter found here:

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24713888
——— Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: afauci@niaid.nih.gov
Cc: tickbornedisease@hhs.gov, (98 Undisclosed Recipients)
Date: June 20, 2019 at 7:05 AM
Subject: Antibiotics are generally effective at all stages of the disease

June 20, 2019

Office of the Director,
National Institute of Allergy and Infectious Diseases (NIAID),National Institutes of Health
Bethesda, MD 20892
Attn: Anthony S. Fauci, M.D., Director

Dr. Fauci,

As a follow-up to my previous email dated June 17, 2019 I would like to call attention to the following Steere publications. The first dated 1977 and the latest published just this week.

1. Lyme arthritis: an epidemic of oligoarticular arthritis in children and adults in three connecticut communities. (1977)

Steere AC, Malawista SE, Snydman DR, Shope RE, Andiman WA, Ross MR, Steele FM.

https://www.ncbi.nlm.nih.gov/pubmed/836338

Excerpt:

The best treatment for this illness is not clear. Some physicians have reported that penicillin or tetracycline results in disappearance of the skin lesion (41,42), but others find antibiotics ineffective. Four of the patients with expanding skin lesions received penicillin but still developed arthritis.”

Carl Tuttle’s comment: Forty two years ago Allen Steere knew that antibiotics used to treat Lyme disease were not working.

2. Borrelia burgdorferi peptidoglycan is a persistent antigen in patients with Lyme arthritis (2019)

https://www.pnas.org/content/early/2019/06/11/1904170116

Excerpt:

“Although antibiotics are generally effective at all stages of the disease, arthritis may persist in some patients for months to several years despite oral and intravenous antibiotic treatment.”

What happened over the past decades that suddenly made 30-year-old antibiotic therapy effective for treating Lyme disease in all stages especially when there are more scientific references highlighting treatment failure than success? [i]

Might I remind you Dr. Fauci that Allen Steere has been named in a racketeering lawsuit [ii] that alleges he and six other co-defendants colluded to deny persistent infection through an elaborate racketeering scheme. This scheme has been financed through tax payer dollars in the form of NIH grants. Steere’s latest study was funded through NIH Grant # AI101175 and AI144365.

Patient testimony is describing a disease that is ruining lives, ending careers while leaving its victim in financial ruin. Patients who fail 30-year-old antibiotic therapy for Lyme disease are left to fend for themselves. Hundreds of thousands (if not millions worldwide) have been harmed by these actions bought and paid for by US taxpayer dollars. Public health officials globally are blindly following what has been deceitfully established here in America. We lost forty years to this racketeering scheme when we should have been developing more effective antimicrobials.

The mishandling of Lyme disease can be traced back to vaccine development when at that time, the infection was classified as “easily diagnosed and treated.” Publications prior to Dearborn (1994) painted an entirely different picture. The 1977 Steere publication listed above is just one of those publications.

So why do we need a Lyme disease vaccine (now on fast track with the FDA) if “antibiotics are generally effective at all stages of the disease?”

The National Institutes of Health continues to finance this racketeering scheme under your watch Dr. Fauci.

Carl Tuttle

Lyme Endemic Hudson, NH

References
[i] References for persistence of Lyme disease (Lyme borreliosis) are listed alphabetically and chronologically

Compiled by: John D. Scott, Research Division Lyme Disease Association of  Ontario

April 2013 (My personal Dropbox storage area)

https://www.dropbox.com/s/reiown7v732av00/Persistence%20of%20Lyme%20Disease.doc?dl=0
[ii] Racketeering lawsuit court document

https://www.dropbox.com/s/18uyrli878ug51m/LymeDisease%20RICO%20Lawsuit.pdf?dl=0

Anti-vaxxers stopped the last Lyme disease vaccine. The FDA has just fast-tracked a new one
The U.S. Food and Drug Administration (FDA) this week announced plans to expedite approval of a vaccine for Lyme disease. Valneva…

Legal Defense Fund For Dr. Kenneth Stoller

https://gogetfunding.com/legal-defense-fund-stoller/

Legal Defense Fund For Dr. Kenneth Stoller

Michigan Lawmakers Who Want More Regulations Around Lyme Disease Face Pushback

https://www.mlive.com/news/2019/06/michigan-lawmakers-who-want-more-regulations-around-lyme-disease-face-pushback.html

Michigan lawmakers who want more regulations around Lyme disease face pushback

390650 07: A Close Up Of An Adult Female Deer Tick, Dog Tick, And A Lone Star Tick Are Shown June 15, 2001 On The Palm Of A Hand. Ticks Cause An Acute Inflammatory Disease Characterized By Skin Changes, Joint Inflammation, And Flu-Like Symptoms Called Lyme Disease. (Photo By Getty Images)

Getty Images

A Close Up Of An Adult Female Deer Tick, Dog Tick, And A Lone Star Tick Are Shown June 15, 2001 On The Palm Of A Hand. Ticks Cause An Acute Inflammatory Disease Characterized By Skin Changes, Joint Inflammation, And Flu-Like Symptoms Called Lyme Disease. (Photo By Getty Images)

A group of lawmakers and survivors are pushing for stricter regulations for testing, diagnosing and reporting Lyme disease cases in Michigan – but critics of the bills say the legislation would further confuse how the cases are handled.

On Thursday, the Michigan House Health Policy Committee took testimony on eight bills and one resolution supporters said would help those who suffer from the tick-borne illness get correctly diagnosed and treated sooner.

Reps. Karen Whitsett, D-Detroit, and Gary Eisen, R-St. Clair Township, who both sponsored bills in the package, told lawmakers they suffered from Lyme disease and struggled getting a straight answer and treatment from doctors for years. Whitsett showed the committee a stack of stuffed binders she said were only a portion of her medical records while she sought diagnosis and treatment for her illness.

It took me months to find a doctor willing to test me,” she said. “You cannot get the help that you really need and deserve.”

Lyme disease is transmitted to humans through blacklegged ticks, also known as deer ticks, and if left untreated can spread to joints, the heart or the nervous system. The Centers for Disease Control and Prevention says most cases of Lyme disease can be treated successfully with a few weeks of antibiotics, and warns against prolonged use of antibiotics to treat Lyme disease symptoms.

The resolution in the package would urge the Centers for Disease Control and Prevention to update its definition of Lyme disease symptoms and reconsider standards for diagnosing and treating the disease.
House Bills 4603 through 4609 would require additional testing for and reporting of Lyme disease cases, require health insurers to cover Lyme disease testing and prohibit any disciplinary action for doctors who opt to treat Lyme disease patients with long-term antibiotic use.

A separate bill, HB 4659, would require state parks, campgrounds and trails to post signage warning patrons about tick-borne diseases.

Supporters of the bill who survived Lyme disease told the committee it could prevent others from going through years of pain and illness before hitting on a treatment that worked, and keep them from paying thousands of dollars out-of-pocket for necessary treatment.

But health providers balked at some of the requirements the bills would impose, noting the CDC does not currently recognize Lyme disease as a chronic illness, meaning there are no set codes for insurers to use to cover it.

“In an emerging area of clinical medicine, we are concerned with a government mandate for treatment protocol that is not agreed upon by the medical community,” Kristen Kraft of Blue Cross Blue Shield of Michigan wrote in provided testimony. “Blue Cross does recognize the appropriate use of antibiotics for extended treatment periods for certain disease indications, done in consultation with providers.”

The Michigan Lyme Disease Association also opposed the bills as introduced, taking the position that reform is needed, but that the bills are repetitive, loosely worded and would do little to help Lyme disease patients.

“In their current form the bills are not relevant in some cases, are not a top priority in others, are incomplete, lack funding to accomplish their goals and lack substance,” Carrie Nielsen, the association’s secretary, wrote in testimony to the committee.

The bills would have to be passed through the House and Senate and signed by the governor before becoming law.

_________________

**Comment**

I do believe Wisconsin’s legislators are getting their current ideas from Michigan. They have adopted many similar measures:  https://madisonarealymesupportgroup.files.wordpress.com/2019/05/time-to-bite-back-against-lyme-disease-05-23-19.pdfWhile WI bills 1-4 are all about prevention and certainly helpful, bill #5 is opening a can of worms that could potentially hurt patients and the doctors who dare treat them. The reason for this is it calls for a 16-member panel to propose legislation on the diagnostics and treatment of Lyme disease.  Since there is such disagreement in the medical community on these issues, the panel could be loaded with CDC/IDSA-types who espouse to the CDC antiquated and unscientific guidelines of essentially 21 days of doxycycline for everyone, despite length of illness, coinfections, and the persistence of the organism in the human body which can cause relapsing symptoms.

Please note the Michigan Lyme Disease Association is OPPOSED to the bills.

I’m certain they are concerned about the same issues.

Even if you staff the panel with well-meaning but uneducated Lyme/MSIDS patients, they very well could inadvertently go along with something that would be catastrophic to patients and Lyme treating doctors.  Many patients do not understand the diabolic back-story to all of this and the underhanded way it’s all been handled.  https://madisonarealymesupportgroup.com/2018/12/10/tuttles-letter-to-the-assistant-secretary-for-health-is-the-mishandling-of-lyme-a-result-of-incompetence-or-collusion/

These muddied politics take savvy and persistence that’s akin to borrelia itself. Many patients do not have the required education, health to handle stress, and healthy skepticism required.

After speaking with numerous Lyme treating physicians in Wisconsin, they too oppose WI bill #5 due to government overreach – telling them how to treat patients. They state to imagine the government telling doctors how to treat diabetes or cancer.…it just isn’t done.  Doctors attend medical school to be in the business of treating people. The government should stay out of that. If we allow this type of overreach in medicine, how long will it take before overreach happens in every facet of life?

Another comment by a WI LLMD is that they are in contact with ILADS-trained Lyme/MSIDS treating doctors in states that have adopted “Doctor protection” bills. These doctors are NOW under the Eye of Mordor and are now being persecuted. So while patients believe they are helping doctors, these protection measures have and often work against doctors by putting them in the spotlight. 

Politics is often counter intuitive.

After pondering this issue for some time, I’m in agreement with microbiologist Tom Grier who states the best way for the Lyme Wars to end is by doing the proper science. He points out that 40 years of attempting to change this politically hasn’t worked & has at times completely backfired.  His belief, and now mine, is we need to fund pathology work to end the Lyme Wars:  https://madisonarealymesupportgroup.com/2018/04/13/chronic-lyme-post-mortem-study-needed-to-end-the-lyme-wars/

Back to Michigan’s proposed measures.

Similarly to the WI proposed bills, the signage at state parks, etc., is all good. Messing around with bills that could backfire against the few doctors in Michigan treating this appropriately is not good.

I stand with Michigan Lyme Disease Association.  STOP any and ALL bills that mess with treating physicians.