Archive for the ‘Uncategorized’ Category

The Green Envelope Project Lyme Patients Can Do From Bed

Green Envelope Project Revised (Go here for letter to print off)

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Mission: To flood the White House with as many letters as possible in the month of May to increase awareness of Lyme disease and the issues surrounding it.

Rationale: May is Lyme Awareness month and, with the Lyme disease march occurring in Washington, DC at the same time, this will further generate awareness especially with the representatives in DC.

We encourage you to participate and, even if you can get one other person to participate, we can make a difference!

Instructions to participate

  1. Print out the letter {We chose to make it a generic letter that both Lyme sufferers and their friends and family use. We are not having people write their own stories at this time as it increases the difficulty for many Lyme sufferers and we want to make it as easy as possible}
  2. Sign your name on the bottom of the next page
  3. Print out the letter on the second page of this document and place it in a GREEN envelope {The green envelope is the attention grabber}
  4. Adding your own email or address at the bottom is optional
  5. Address it to:
    The White House
    1600 Pennsylvania Avenue NW Washington, DC 20500
  6. Send it on May 1st 2019 or throughout the month

*Things to remember: This is not about political parties or thoughts about who is in office, but to stand together in one voice to make an impact and create change. The letter may not include everything that you may think needs to be included, but with the complexity of this disease, it is important to focus on the key issues and to keep it as straight forward as possible

*We do encourage that if you want to share your story in detail or want to address issues that are not added in this letter, that you do so separate from this project. This is project is just one way to spread awareness, and we want as many people to be involved and send letters.

Letter states:

Dear President Trump:

There are only 30,000 cases of CDC identified Lyme cases each year. The CDC estimates the actual number is closer to 300,000 cases a year. That is 270,000 A YEAR that go undiagnosed or misdiagnosed according to the CDC standards. Getting a Lyme diagnosis is almost impossible because the CDC believes that their current two-tiered approach to testing for Lyme is sufficient, although there is evidence to show it gives false negatives over 50% of the time (this is the same test they have used for decades). Countless individuals have to pay out of pocket for testing that, is more accurate, but not currently approved. Some individuals have died because their diagnosis came too late.

The lack of physician education to Lyme disease is shocking. Many physicians will refuse to test for Lyme disease, if they do test, they are unaware of the ineffectiveness of the testing. Some physicians will not treat with positive tests or will undertreat. Some of the affected individuals that are lucky enough to get the “standard” treatment, but continued to have symptoms, will be told that they no longer have Lyme and that they should feel fine. Most are told they are either mentally ill,hypochondriacs, stressed out, or just to “suck it up.” All the while, these individuals are fighting debilitating horrible symptoms while trying to get the help they need.

The CDC is ignoring research that shows the bacteria is persisting after the standard dose of antibiotics were given. There are Lyme Literate Physician’s (LLMD) that believe and attempt to treat Chronic Lyme disease. Within the mainstream medical community, these physicians are seen as“quacks” taking advantage of a group of mentally ill individuals who “think” they are sick. Thesephysicians use multiple modalities and go against “standard medical guidelines” to help a group ofpeople that no one is helping, risking their license in the process. These Lyme sufferers have to search to find these physicians, and often must travel long distances, as well as shell out hundreds of thousands of dollars out of pocket.

They have lost jobs, homes, family, and friends to a terrible illness. The CDC has had decades to work for them and come up with testing and solutions. They have not, and it is evident that they will not.The people who have been pushing this under the rug need to be held accountable and Lymedisease needs to be addressed….by people that actually will address the real issue, Chronic Lyme exists and is destroying lives. They need to be heard, believed and helped.

To respond please send to _____________________________________________.

Sincerely,

____________________________________

Category:

Activism, Lyme, Uncategorized

Interview with Kris Newby – “Bitten: The Secret History of Lyme Disease & Biological Weapons”

UNDER OUR SKIN Director Andy Abrahams Wilson interviews Kris Newby, author of “Bitten: The Secret History of Lyme Disease and Biological Weapons.” May 1, 2019

LYME & BIOWEAPONS: CONSPIRACY THEORY NO MORE
Interview with Kris Newby, Author of “Bitten”
Kris Newby, science writer and Senior Producer of UNDER OUR SKIN, says she took five years on her new book because
“I wanted to make sure the evidence was rock solid.”
The result of her efforts is a captivating account of Lyme discoverer Willy Burgdorfer’s work for the U.S. biological warfare program.
“Willy was mixing pathogens in ticks,” Kris explains, and “ticks were part of the bioweapons program form the very beginning, after WWII.”
Kris paints Willy as an enigmatic, maybe tragic, figure and immigrant from Switzerland caught-up in something big that got out of control.
“I think he suspected that the whole Lyme outbreak was a bioweapons accident…but he was afraid to speak out,” Kris says. “He didn’t so much discover Lyme disease as recognized it from his 20+ years working for the bioweapons program.”
Also check out video outtakes from our 2006 interview with Willy Burgdorfer.
“Bitten: The Secret History of Lyme Disease and Biological Weapons” will be released by Harper Collins publishing house on May 14th. Pre-order “Bitten” on Amazon now!
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For those just tuning in, here’s a fantastic article to catch you up to speed:  https://www.lymedisease.org/lymepolicywonk-questioning-governments-role-lyme-disease-make-conspiracy-theorist/  Excerpt:

. . .I am a biologist, so that’s where I started working on ticks and mosquitoes—how to produce a lot of them. Drop them out of airplanes. Everything was very hush-hush, very secret. I’m still leery talking about it, because I think they might put me in jail because I’m delivering secrets. [Laughs.] It was a crazy time.

In PJ Langhoff’s book, “God Science: The Secret World of Rampant Genetics, Hidden Illness, and Biotech Profiteering,” she details how as a kid in Illinois, she and her siblings heard a radio announcer state that researchers from a nearby facility were going to drop items from an airplane and that people were to leave these items alone and let the researchers collect them.  Shortly after, every kid in the neighborhood was out hunting.  PJ first found a boring piece of cloth which she left, but after that found an interesting capsule that had broken open upon impact.  Funny looking bugs were crawling out of it. Bugs she didn’t recognize. She developed a perfect bullseye rash, went to doctor after doctor who had no idea what it was, went from a straight-A student to a struggling student, and the rest is history with her struggling with chronic/persistent symptoms ever since.  I highly recommend her book.  FYI:  Years later she attempted to obtain the “official” information on this tick drop and it was scrubbed from existence yet all her siblings remember it as if it was yesterday.

pps.dtic.mil/dtic/tr/fulltext/u2/660311.pdf  In this 1967 U.S. Army report, we find starting on page 600, ticks that were experimentally infected with various pathogens.  For instance, on page 301 that Boophilus australis was experimentally infected with murine typhus rickettsia.  Dermacentor albopiotuswith spotted fever, Dermacentor andersoni with typhus rickettsiae, and so on and so forth.

And I would be amiss to to mention all the work Dr. Garth Nicolson has done on Mycoplasma, which he wrote about in his book, “Project Day Lily.”  https://madisonarealymesupportgroup.com/2015/08/12/connecting-dots-mycoplasma/  Excerpt:

90% of evaluated ALS patients had Mycoplasma. 100% of ALS patients with Gulf War Syndrome had Mycoplasma and nearly all of those were specifically the weaponized M. fermentans incognitus.

*One of the hallmark symptoms of Mycoplasma is fatigue*

And the bad news for us is that Nicholson’s experience has found Mycoplasma to be the number one Lyme coinfection, and similar to other coinfections can be supposedly cleared for years only to reappear when conditions are right.

As to the “Swiss Agent” Newby refers to in the video:  https://madisonarealymesupportgroup.com/2016/10/12/willy-speaks-from-the-grave-rickettsia-helvetica/  Excerpt:

What makes this crucial for MSIDS patients is his fascination and concern with Rickettsia helvetica, something he coined, “Swiss Agent.” The article poses an idea that doctors might be mistaking this infection for Lyme or that this agent could also be another co-infection complicating and confusing cases.

Rickettsia helvetica is known predominantly in Europe and Asia as relatively rare but linked to sudden deaths from heart disease. Other symptoms include facial palsy, deafness, meningitis, chronic muscle weakness, temporary paralysis, debilitating fatigue, severe headaches, and sarcoidosis.

There is no test in the U.S. for Rickettsia helvetica.

And the information inside this obituary of Roger Breeze, head of the high containment laboratory at Plum Island from 1987 to 1995 is quite illuminating:  https://www.telegraph.co.uk/obituaries/2016/09/29/roger-breeze-expert-in-animal-diseases–obituary/  Excerpt:

“Bioterrorism,” he warned a food conference in 2001, “is a cheap alternative to nuclear war and, chances are, that is how the United States would be attacked…..

“People have no idea what’s out there,” he told an interviewer in 1995. “It’s all so goddamn crazy. There’s something called mad cow disease in England that we’re keeping a close eye on. We’ve got ostriches from Namibia that could be carrying ticks with Congo Crimean haemorrhagic fever. We’ve got Vietnamese potbellied pigs, alpacas and llamas, you name it.”

At Plum Island, America’s equivalent of Britain’s Pirbright Institute, a centre of research into livestock diseases, Breeze supervised a major overhaul of laboratory facilities and initiated research programmes into the genomic basis of disease pathogenesis, and the development of genetically-engineered vaccines and techniques known as PCR diagnostics (in which copies of short sections of DNA are developed or “amplified” from a very small sample of genetic material, enabling specific genes to be detected or measured quickly).

Anyone besides me getting the feeling that this very well may be a reason we aren’t getting better?

Category:

Uncategorized

Tick Talk: A Conversation About Lyme – Dr. Neil Spector

Tick Talk: A Conversation About Lyme

Published on Apr 14, 2019

PA still holds the crown for highest number of CDC reported cases of Lyme Disease making our state home to thousands of sick people. @drneilspector, Duke University Oncologist, chats with @Chick2Chick about his own Lyme story and how cancer research is providing hope for Lyme diagnostics and therapies! You can also listen to this as a podcast at your convenience through your favorite online podcast directory – iTunes, Stitcher, Spotify, TuneIn, Podbean or Google Play.
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For more:
Dr. Spector suffered from misdiagnosed Lyme disease for many years, and during that time, his heart was affected. He was near death and only a heart transplant could save his life. He chronicled the experience in his riveting memoir, Gone in A Heartbeat: A Physician’s Search for True Healing.  Since then, Dr. Spector has become a unique advocate for Lyme patients. He thoroughly understands the patient’s viewpoint, including what it’s like to know that something is seriously wrong with your body and yet have doctors dismiss your symptoms.

 

 

 

Category:

Activism, Heart Issues, Lyme, Uncategorized

GLA Chief Scientific Officer’s Response to NIH on Tick-borne Disease Strategic Plan

https://globallymealliance.org/request-information-input-nih-tick-borne-diseases-strategic-plan/?

tick-borne diseases

BELOW IS A LETTER FROM GLOBAL LYME ALLIANCE’S CHIEF SCIENTIFIC OFFICER IN RESPONSE TO THE NIH’S REQUEST FOR INFORMATION TO THEIR TICK-BORNE DISEASES STRATEGIC PLAN

As Chief Scientific Officer of GLA, I herewith respond to the solicitation for feedback to the National Institutes of Health Tick-borne Diseases Strategic Plan, which was developed by the Tick-Borne Disease Working Group, a Health & Human Services advisory committee established by Congress in its 21st Century Cures Act. While the plan includes important topics on which research efforts should focus, our position is that it neglects several urgent areas that are of equal or higher importance.

Deficiencies in the current Strategic Plan include:

  1. The lack of any mention under the heading “Basic Research” of the need to better understand mechanisms of bacterial persistence both in reservoir species and in the face of exposure to antibiotics and the implications for treatment failure and persistent infection/symptomatology.
  2. The lack of mention under the heading “Diagnosis and Detection” of the need to supplement indirect diagnostic tests, that rely upon the presence of antibodies, with direct tests that detect the presence of pathogen-specific protein antigens or nucleic acid. Additionally, the testing paradigm needs to shift towards multi-pathogen (bacterial, viral, etc.) rather than solely Lyme disease diagnoses.
  3. The lack of mention under the heading “Therapeutics” of the need to develop novel treatment strategies for those suffering from multiple tick-borne and/or opportunistic infections. Additionally, there is a need to explore non-traditional treatment modalities to care for patients continuing to suffer from persistent infection/symptomatology due to initial antibiotic treatment failure.

The list also underemphasizes (1) the ecology and management of ticks; (2) ecological interactions between ticks, hosts, and pathogens; and (3) environmental drivers of tick emergence, spread, and changing risk. Specifically, the plan lacks:

  1. Mention of national surveillance of ticks and tick-borne pathogens that would provide real-world representations of exposure risk in space and time;
  2. Any mention of finding vulnerabilities in the tick/host/pathogen life cycle and of the importance of seeking the means of exploiting such vulnerabilities to control exposure;
  3. A focus on identifying and ameliorating anthropogenic disturbances (land use changes, climate change, habitat degradation, etc.) that exacerbate tick-borne risk;
  4. Recognition of the importance of understanding how both native and non-native ticks (e.g., black-legged ticks, lone star ticks, long-horned ticks, etc.) become invasive, rapidly expand beyond their historic geographic ranges, and potentially share hosts and pathogens; and
  5. A focus on novel and existing methods to reduce tick populations.

It is our institutional view that any set of research priorities on tick-borne diseases in the United States must address these essential issues. We hope that by pointing out these omissions you will be allowed to redress their absence in a final draft of the NIH’s Tick-borne Diseases Strategic Plan.

Respectfully,

Timothy J Sellati

 

Timothy J. Sellati, Ph.D.
Chief Scientific Officer
Global Lyme Alliance

_______________________

**Comment**

It saddens me that still after over 40 years, the basics need to be pointed out to the people running the show.  The issues delineated in this letter are so basic a kindergartner could explain them, yet authorities treat this as a one pathogen illness using testing that’s like throwing sand into the ocean.

My only concern with #3 in the last series is the mention of “climate change” when independent Canadian tick researcher, John Scott, has completely blown that “theory” out of the water showing ticks to be very ecoadaptive and able to survive harsh conditions by merely crawling under leaf litter or snow:   https://madisonarealymesupportgroup.com/2018/08/13/study-shows-lyme-not-propelled-by-climate-change/

Nothing has resulted from ANY data on the climate in helping very ill patients.

Recently advocate Carl Tuttle delineated 10 ways on how to maintain the illusion that the Lyme/MSIDS pandemic is under control:  https://madisonarealymesupportgroup.com/2019/04/19/how-to-maintain-the-illusion-the-lyme-misds-pandemic-is-under-control/

See link for references and entire article.  List below developed article:

1. Produce a two tier antibody testing algorithm where first line screening tests (Elisa) fail to detect 60% of infections. Those patients who do test positive will be allowed the second more sensitive test (Western blot) but design the test with strict criteria (Case definition) so as to rule out 90% keeping infection numbers artificially low.

2. Fund only those studies through institutions with researchers that have a bias against persistent infection.

3. Maintain a belief that all stages of infection, acute through late stage are easily cured with a standard two week treatment guideline and turn the disease into a syndrome when patients complain of persistent debilitating symptoms after unsuccessful treatment.

4. If a culture test should be developed which is the gold standard for many bacterial infections do not recognize this test and insist it is not government approved.

5. Create a map depicting limited territories were the infection is present.Use an existing institution with a bias against persistent infection to manage the data.

6. Define the disease exclusively as a zoonotic illness and disregard congenital and gestational transfer cases or transfer between sexually active couples.

7. No need to screen the blood supply for this pathogen.

8. Ignore Primate studies proving persistent infection.

9. Create a foundation to promote the disinformation campaign and staff the foundation with the same researchers with a bias against persistent infection.

10. Create a Working Group to talk about the problem for another decade (submitting reports every two years) without upgrading the threat to Highest Alert even though infection rates may exceed five times the AIDS epidemic or become twice as prevalent as breast cancer.

 

 

 

 

 

 

 

 

Category:

Activism, Lyme, Uncategorized

Lab Acquired Infections: Lyme

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24414377?cs_tk=AvrO18-

LABORATORY-ACQUIRED INFECTIONS: Borrelia burgdorferi

APR 11, 2019 — 

Please see the correspondence below identifying deaths from LABORATORY-ACQUIRED Borrelia burgdorferi in 1976 before Lyme was formally identified.

——– Original Message ———-

From: CARL TUTTLE <runagain@comcast.net>
To: brett.giroir@hhs.gov, tickbornedisease@hhs.gov
Cc: (96 Undisclosed recipients)Date: April 11, 2019 at 10:43 AM

Subject: The spirochete responsible for Lyme disease was not formally identified until 1982 by Willy Burgdorfer

April 11, 2019

U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201
Attn: ADM Brett P. Giroir, M.D., Assistant Secretary for Health

Dr. Giroir,

Please see the attached PDF published in 1999 by the Canadian Office of Biosafety Information which was edited by the Colorado State University Office of Biosafety.  https://www.dropbox.com/s/pjqxu42638071sq/Infectious%20Agent.pdf?dl=0

Excerpt:

SECTION I – INFECTIOUS AGENT

NAME: Borrelia burgdorferi

Date prepared: October 11, 1997 Prepared by- Canadian Office of Biosafety

Information edited by the Colorado State University Office of Biosafety; June 16, 1998.

From section VI:

LABORATORY-AQUIRED INFECTIONS: 45 reported cases up to 1976 with 2 deaths.

________________________________________

Discussion…..

The spirochete responsible for Lyme disease was not formally identified until 1982 by Willy Burgdorfer so how did laboratory personnel become infected (and with two reported deaths) prior to 1982?

Notice that “modes of transmission” identified are other than vector borne.
Were these infections acquired at Pathogen Detection Laboratories or bio-warfare facilities?

What is most disturbing here is a reported death rate of 4% for this group. The CDC recently estimated an annual 329,000 Lyme disease cases occur yearly in the U.S. and a 4% death rate would equate to 13,160 deaths annually.

Reference:

How many people get Lyme disease?
https://www.cdc.gov/lyme/stats/humancases.html

“In this study, researchers estimated that 329,000 (range 296,000–376,000) cases of Lyme disease occur annually in the United States.”

How prevalent is death from complications of Lyme disease if no one is looking for the pathogen at the time of death? Wouldn’t it make sense to screen still births, the hearts from cardiac deaths or the brains from patients who pass from Alzheimer’s disease for Borrelia infections?

If no one is looking then no one is counting.

For example: Take a look at the Microbiology Laboratory page for Brigham and Woman’s Hospital which is located in one of the highest Lyme endemic regions in America. Do you see any mention of testing for the causative agent of Lyme disease; Borrelia burgdorferi?

Brigham and Woman’s Hospital Microbiology Laboratory
https://www.brighamandwomens.org/pathology/clinical-pathology/microbiology-laboratory

It’s as if this disease is of no concern for the medical community and that needs to change Dr. Giroir as patient testimony continues to describe a disease that is destroying lives, ending careers while leaving its victim in financial ruin.

Carl Tuttle
Lyme Endemic Hudson, NH

_____________________

**Comment**

This 2005 video with transcript of Dr. Lida Mattman states Bb transmission can happen in numerous ways – not just by a tick:  https://madisonarealymesupportgroup.com/2019/04/02/transmission-of-lyme-disease-lida-mattman-phd/

Excerpt:

We know now it’s in tears and people wipe their eyes and then you shake hands with them. Or we don’t laugh so hard about the physician we had in the hospital who wouldn’t touch the doorknobs in the hospital without taking his white coat and handling the doorknob through a coat. Maybe he wasn’t so insane after all.

So we think this is spread by what is called fomites (an inanimate objector substance that is capable of transmitting infectious organisms fromone individual to another) which is the pencil in the bag as you pick up a pen to write a check or anything you handle. So it’s in urine and in tears and it’s also spread by mosquitoes and who hasn’t had a mosquito bite?  We’ve tested the mosquitoes in Michigan and sure enough they can carry the Lyme spirochete.  

Together with her collegue JoAnne Whittacker, Mattman did groundbreaking work on Lyme testing. Her Gold Standard Culture Method has disappeared thanks to the concerted suppression on microscopy. In 2004 she already claimed that she could not find any uninfected blood in the USA anymore.

Mattman isolated living Borrelia spirochetes in mosquitoes, fleas, mites, semen, urine, blood, plasma and Cerebral Spinal Fluid. She discovered that this bacteria is dangerous because it can survive and spread without cell wall (L shape). Because L-forms do not possess cell wall, they are resistant to antibiotics that act upon the cell wall.

Others have found various ways Bb is transmitted as well:

THE CDC/IDSA/NIH STILL HAVEN’T RECEIVED THE MEMO or they are ignoring it

 

 

 

Category:

Uncategorized