Archive for the ‘Activism’ Category

Urgent Action Needed

Please find information regarding the potential NEW FEDERAL LYME law that could potentially CODIFY the IDSA guidelines. PLEASE contact your senator or congressperson TODAY and talk with anyone else you feel may have influence on this vote: requesting the following outlined by Gregg Skall:



The 21st Century Cures Act now being refined by the lame duck Congress is one of the most-lobbied health care bills in recent history, with nearly three lobbyists working for its passage or defeat for every lawmaker on Capitol Hill.

Legislation That Would Shape FDA And NIH Triggers Lobbying Frenzy
 
http://www.npr.org/sections/health-shots/2016/11/25/503176370/legislation-that-would-shape-fda-and-nih-triggers-lobbying-frenzy

Prior versions of section 2062 required diversity of working group members (i.e. members who support the variety of viewpoints and the diversity of science research respecting Lyme and Tick-borne diseases). This language has been stripped from the current version, undermining the interests of the Lyme community:
 


A reworked 21st Century Cures Act was released over the holiday weekend which contains wording that is undeniably HORRIBLE for the Lyme patient community.  The 21st Century Cures Act new version provides for the formation of Lyme committees without any guarantees of balance. Based on years of experience with all the parties involved, including and particularly NIH, this new provision will not provide for the required diversity of viewpoint required to arrive at a meaningful and useful result; indeed, it will have the opposite effect.  We are asking that the Tick-borne disease provision, starting at Section 2062 be deleted from the bill.
 
   

(c) TICK-BORNE DISEASES WORKING GROUP.—

10 (1) ESTABLISHMENT.—The Secretary may es-

11 tablish a working group, to be known as the Tick-

12 Borne Disease Working Group (referred to in this

13 section as the ‘‘Working Group’’), comprised of rep-

14 resentatives of appropriate Federal agencies and

15 other non-Federal entities, as appropriate, to provide

16 expertise and to review all efforts within the Depart-

17 ment of Health and Human Services related to tick-

18 borne diseases, to help ensure interagency coordina-

19 tion and minimize overlap, and to examine research

20 priorities.


The Lyme disease community is united against this wording as it currently stands. At this point, there is a consensus that we want section 2062–the part of bill related to Tick-borne Diseases–be struck completely from the bill.
 


Attached is a copy of the full 21st Century Cures Act and the Section that we need deleted.  Section 2062.  Also, attached is a PowerPoint I presented a couple of weeks ago that shows the provisions of the Gibson bill in side-by-side with a senate version.  The bullets under the side-by-side slides show the benefits of the Gibson version.  Compared to the new Sec. 2062 attached, you can see why we just want it pulled.

Thanks to Gregg Skall JD of Womble Carlyle and Susan Green, JD for sharing this information with ILADS.

 Thank you for your quick action!

The ILADS Board

21st Century Cures Act

http://imgsvr.eventrebels.com/ERImg/01/07/55/21stCenturyCuresActCPRT-114-HPRT-RU00-SAHR34(2)(1).pdf

Section 2062

  http://imgsvr.eventrebels.com/ERImg/01/07/55/SEC.2062.TICK-BORNEDISEASES(1).pdf

Lyme Legislation PowerPoint http://imgsvr.eventrebels.com/ERImg/01/07/55/LymeLegislation201621st.pdf

Category:

Activism, Uncategorized

Part 2 Lyme & Reason

  Fox5NY

Published on Nov 18, 2016

A follow-up to the groundbreaking LYME & REASON: THE CAUSE & CONSEQUENCE OF LYME DISEASE, “The Voices of Change” focuses on the use of social media as a tool to inform and open the door to change on the Lyme disease front, and how patients, advocates, physicians and others are moving the conversation forward. Plus, host Teresa Priolo sits down with TV personality and Lyme disease patient and advocate Yolanda Hadid about her ongoing battle with Lyme.

If you missed Part 1

 Fox5NY

Published on Jul 1, 2016

“LYME AND REASON: THE CAUSE AND CONSEQUENCE OF LYME DISEASE” presents an in-depth look at the cause and effect of Lyme disease, including the controversy over testing, the issues of misdiagnosis, and the personal struggles of medical professionals and patients contending with this life-changing illness.

-Brian A. Fallon, MD, MPH, Director of the Center for Neuroinflammatory of the Lyme and Tick-Borne Diseases Research Center at Columbia University talks about the cause of Lyme disease and what you should do if you’re bitten by a tick!

-Yale-trained Lyme disease expert Steven Phillips, MD, addresses the controversy surrounding Lyme disease, while Paul Mead, MD, Chief of Epidemiology and Surveillance Activity of The Bacterial Diseases Branch of the Centers for Disease Control and Prevention, offers the perspective from the country’s lead public health agency.

-Singer and songwriter Dana Parish describes how Lyme disease temporarily derailed her music career during the prime of her life, and how she is now raising awareness about this debilitating illness!

-Lyme patient and advocate Susan Green of the non-profit The National Capital Lyme and Tick-Borne Disease Association (NatCapLyme) talks about the burden placed on families in terms of costs for the treatment of Lyme disease!

-Renowned oncologist Neil Spector, MD, shares his own personal story of his transition from doctor to patient, and how Lyme disease led to an emergency heart transplant!

-Actress and TV personality Marla Maples talks about her own diagnosis of Lyme disease, and how she is encouraging other celebrities to share their stories to put the spotlight on Lyme!

-Author, artist and designer Ally Hilfiger, the daughter of fashion icon Tommy Hilfiger, reflects on how Lyme disease stole her childhood, and her mind after being committed to a psychiatric hospital!

-Patricia De La Mora, Associate Professor of Clinical Pediatrics, Weill Cornell Medical College talks about prevention and how to keep your children safe, while Lawrence Putter, MD – Medical Director Lenox Hill Veterinarians discuss pet safety when it comes to ticks!

-12-year-old Julia Bruzzese shares her heartbreaking story of how Lyme disease has left her unable to walk, and how a blessing from Pope Francis on his visit to NYC last year has given her and her family hope for recovery!

Category:

Activism, Lyme, Treatment

Letter to the Editor/Petition

Oh, this is good.  Get the popcorn.

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/18499865?tk=HQJY_dTAdQhqzqoRTwpPEZ1G2bD9xSdDPNZuEPm2VJk&utm_source=petition_update&utm_medium=email

Letter to the Editor: The American Journal of Medicine

Carl Tuttle
Hudson, NH

NOV 17, 2016 — Per the recent publication in the Journal of The American Medical Association it would appear that Gary Wormser of New York Medical College is suffering from delusions of grandeur.

Nov 14, 2016

Elsevier Inc.
1600 John F. Kennedy Boulevard, Suite 1800
Philadelphia, PA 19103-2899
Attn: Joseph S. Alpert, MD Editor-in-Chief, The American Journal of Medicine

Dear Dr. Alpert

Lyme disease is capable of producing sudden death with no warning signs; [1,2,3] heart damage requiring transplant, [4] paralysis with seizures, [5] and persistent infection after antibiotic treatment [6,7,8,9,10] along with congenital transmission [11] and ability to create wheelchair bound patients. [12]

The last time we recognized a disease with this potential to cause serious harm, (Zika) the CDC wanted 1.8 billion for research. [13]

In contrast, Wormser believes Lyme disease is little more than a nuisance disease (like strep throat) curable with a one-size-fits-all treatment approach and any complaints after treatment are simply the aches and pains of daily living.

Wormser’s escapade in controlling the narrative [14] has been well funded and backed by the CDC.
Wormser has played a pivotal role in the collusion to deny a life-altering infection [15,16,17] which has been misclassified as a simple nuisance disease for over three decades. The focus has been to discredit the severely disabled [18] as opposed to finding a cure for this antibiotic resistant/tolerant superbug. [19,20,21,22]

Now Wormser nominates himself for a Nobel Prize and the The American Journal of Medicine publishes his nonsense?

If you haven’t signed the petition, please read about it and sign here:

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

REFERENCES

1. Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden
Cardiac Death Associated with Lyme Carditis. (March 2016)
http://ajp.amjpathol.org/article/S0002-9440(16)00099-7/abstract

Excerpt:

“Fatal Lyme carditis caused by the spirochete Borrelia burgdorferi rarely is identified. Here, we describe the pathologic, immunohistochemical, and molecular findings of five case patients.”

2. CDC Case Study #1: Three Sudden Cardiac Deaths Associated with Lyme Carditis: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6249a1.htm?s_cid=mm6249a1_w

3. CDC Case Study #2: A case report of a 17-year old male with fatal Lyme carditis
http://www.cardiovascularpathology.com/article/S1054-8807(15)00025-3/abstract?rss=yes

4. Professor Neil Spector: Duke physician uses near-death experience to encourage patient self-advocacy
http://www.dukechronicle.com/articles/2015/05/28/duke-physician-uses-near-death-experience-encourage-patient-self-advocacy#.VYlYnxtViko
Dr Neil Spector from Duke University required a heart transplant after his Lyme disease went undiagnosed for four years.

5. Nashua Mom in the ‘Lyme Light’ on Katie Couric Show
http://patch.com/new-hampshire/nashua/nashua-mom-talks-chronic-lyme-on-katie-couric-show
Fifth-grade teacher Kelly Downing was paralyzed from the neck down and interviewed by Katie Couric.

6. Application of Nanotrap technology for high sensitivity measurement of urinary outer surface protein A carboxyl-terminus domain in early stage Lyme borreliosis.
http://translational-medicine.biomedcentral.com/articles/10.1186/s12967-015-0701-z
41 of 100 patients under surveillance for persistent LB in an endemic area were positive for urinary OspA protein after antibiotic treatment.

7. Culture evidence of Lyme disease in antibiotic treated patients living in the Southeast.
http://danielcameronmd.com/culture-evidence-of-lyme-disease-in-antibiotic-treated-patients-living-in-the-southeast/
Rudenko and colleagues reported culture confirmation of chronic Lyme disease in 24 patients in North Carolina, Florida, and Georgia. All had undergone previous antibiotic treatment.

8. DNA sequencing diagnosis of off-season spirochetemia with low bacterial density in Borrelia burgdorferi and Borrelia miyamotoi infections.
https://www.ncbi.nlm.nih.gov/pubmed/24968274

Faulty/misleading antibody tests landed a sixteen year old male in a psychiatric ward when his lab results did not meet the CDC’s strict criteria for positive results. His Western blot had only four of the required five IgG bands. Subsequent DNA sequencing identified a spirochetemia in this patient’s blood so his psychiatric issues were a result of neurologic Lyme disease misdiagnosed by antiquated/misleading serology. This patient was previously treated with antibiotics.

9. Granulomatous hepatitis associated with chronic Borrelia burgdorferi infection: a case report
http://www.labome.org/research/Granulomatous-hepatitis-associated-with-chronic-Borrelia-burgdorferi-infection-a-case-report.html
The patient had active, systemic Borrelia burgdorferi infection and consequent Lyme hepatitis, despite antibiotic therapy.

10. Scotty Shelton and Persistent Infection in Saginaw MN
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/11685820
“Scotty’s brain (cerebral cortex) was positive for Borrelia burgdorferi and Borrelia myamotoi, his testicle is positive for Bb. We are now testing other tissues. Seven years of antibiotics and 3.5 years of natural treatments (along with antibiotics) and he was highly highly positive.”

11. Congenital Transmission of Lyme/TBD
(See attachment-28 references)
DropBox file: https://www.dropbox.com/s/z10em0szgpm8bll/Congenital%20Transmission%20of%20Lyme%202015.doc?dl=0

12. Wheelchair-Bound Girl Calls Blessing By Pope Francis ‘Most Precious Moment Of My Life’http://newyork.cbslocal.com/2015/09/24/pope-francis-blesses-girl-in-wheelchair/
NEW YORK (CBSNewYork) — A 12-year-old girl who has been confined to a wheelchair since being diagnosed with Lyme disease said meeting Pope Francis as he arrived in New York Thursday was “the most precious moment of my life.”

13. $1.8 billion to fight Zika: CDC moves to highest alert level
https://www.washingtonpost.com/news/post-politics/wp/2016/02/08/obama-to-ask-congress-for-1-8-billion-to-combat-zika-virus/

14. Scientific misconduct or criminal offense?
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/14006106

Dr Gary Wormser of New York Medical College is using taxpayer dollars to support his career long bias against persistent infection while designing studies excluding the sickest of the patient population focusing on the acute stage of disease after early treatment.
The deceptive results of his study is then assumed to apply to the entire patient population giving the impression that Lyme is a simple nuisance disease and patients who are severely disabled are somehow delusional.

15. Amy Tan: SLyme Disease: How A Speck Changed My Life Forever
http://www.humanthology.com/lyme-disease/2014/9/15/slyme-disease-how-a-speck-changed-my-life-forever

16. Averil Lavine: Avril Lavigne Opens Up About Her Health Crisis: ‘I Was Bedridden for 5 Months’
http://www.people.com/article/avril-lavigne-lyme-disease-bedridden

17. Yolanda Foster: Yolanda Foster on Lyme Disease: I’ve Lost Ability to Read, Write, Watch TV

RHOBH’s Yolanda Foster Says Lyme Disease Has Taken Ability to Read

18. Antiscience and ethical concerns associated with advocacy of Lyme disease
Prof Gary P Wormser, MD coauthor
http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(11)70034-2/abstract?rss=yes

19. A Drug Combination Screen Identifies Drugs Active against Amoxicillin-Induced Round Bodies of In Vitro Borrelia burgdorferi Persisters from an FDA Drug Library
http://journal.frontiersin.org/article/10.3389/fmicb.2016.00743/full
Johns Hopkins researchers recently identified Borrelia as an antibiotic resistant/tolerant superbug capable of developing round body forms after antibiotic exposure.

Quotes from Dr. Ying Zhang, professor at the Department of Molecular Microbiology and Immunology at the Johns Hopkins Bloomberg School of Public Health:

-What has tuberculosis and Borrelia burgdorferi in common? In the late stage of the disease occurs persistent (tolerant) bacteria, which essentially means that the bacteria lasts and lasts and lasts. They protect themselves against antibiotics and are difficult to treat.

– Both Borrelia burgdorferi and tuberculosis is relatively easy to cure in the early stages, even with the use of one antibiotic. In the late stage it is impossible to cure the disease with the same type of treatment in the acute phase, said Dr. Ying Zhang when he visited the year NorVect conference.

20. Researchers’ discovery may explain difficulty in treating Lyme disease
http://www.northeastern.edu/news/2015/06/researchers-discovery-may-explain-difficulty-in-treating-lyme-disease/

Excerpt:

“Northeastern University researchers have found that the bacterium that causes Lyme disease forms dormant persister cells, which are known to evade antibiotics.”

21. Evidence of in vivo existence of Borrelia biofilm in borrelial lymphocytomas
http://wtnh.com/2016/02/23/unh-discovers-biofilm-in-those-affected-by-lyme-disease/

Excerpt:
“An article by a UNH research team led by Professor Eva Sapi is the first to show that the microorganisms that cause Lyme disease are resistant to treatment due to what’s called a biofilm. A biofilm – which has a protective layer of “slime” – allows the organisms to hide away from antibiotics at the microscopic level.”

22. Notes and Observations on Cell Wall Deficient Forms. By Tom Grier
http://www.lymeneteurope.org/info/cell-wall-deficient-bacteria
This area of microbiology has long been neglected, and we are now paying a price for that neglect. Dr. Mattman’s work suggests that cell wall deficient forms are prevalent, and pathogenic.

Category:

Activism, Lyme

LymeData 3-Mo Follow-up

https://www.mylymedata.org

If you haven’t done it already, make sure to fill out the follow-up to the MyLymeData Project which allows patients to pool their health information through a secure website. “Big data” projects use advanced technology to gather and analyze huge amounts of patient data, which can assist researchers in studying disease patterns and answering important questions such as why do some people recover from Lyme disease, while others remain ill?

If you’ve never heard of the project and would like to know more, please read:  https://madisonarealymesupportgroup.com/2015/11/11/lyme-research-project/

Your data, without your name or other identifiers, will be combined with the data of other patients and analyzed to help begin to answer important questions about the course of illness and factors that affect whether patients remain ill or become well.

The LymeDisease.org study team will analyze this data on its own and in partnership with researchers and clinicians who are interested in patient-centered research. Independent researchers working on patient-centered research projects approved by LymeDisease.org. may also analyze de-identified patient data.

LDo will provide information about its findings to the community through blogs, publication of white papers, and peer-reviewed articles.

Previous surveys have been published in peer-reviewed publications and used to inform healthcare policymakers on issues affecting the community.

The new follow-up includes a regular 3 month survey that tracks treatments, symptoms, treatment response and quality of life. It also includes a component about genetics, whether Lyme runs in the family, and other related illnesses (e.g. Parkinsons, Lupus etc) that people may have.  This survey is a regular quarterly survey to track treatment response and look at what treatments may be working.  There will also be a decedent survey that will allow people to enter information on behalf of someone who is deceased–for example, what was the cause of death?

If you want to share information about a Lyme patient who has passed away, there are two ways to do it. If you are enrolled in the program yourself, there is now a place to click to enter information about someone who has died. Otherwise, you can just join in that person’s name, and answer the questions on that person’s behalf. There’s a spot to indicate that you are answering for someone who has died.

To do the follow-up, go to:  https://www.mylymedata.org.  You will need to type in your user name and password.

 

Category:

Activism, Lyme, research

Naled Causes Microcephaly

Naled (trade name Dibrom), is being sprayed over Miami.  According to nospray.org not only is it the least effective mosquito control measure, it actually can cause the microcephaly they claim Zika causes.  Again, for those just tuning in, please read:  https://madisonarealymesupportgroup.com/2016/03/08/fixation-on-zikapolio/

http://nospray.org/naled-insecticide-fact-sheet/  “The U.S. Centers for Disease Control and Prevention has written that “adulticiding, application of chemicals to kill adult mosquitoes by ground or aerial applications, is usually the least efficient mosquito control technique.

Naled is no exception. For example, researchers from the New York Department of Health showed that 11 years of naled spraying was “successful in achieving short-term reductions in mosquito abundance, but populations of the disease-carrying mosquito of concern “increased 15-fold over the 11 years of spraying.

Like all organophosphates, naled is toxic to the nervous system. Symptoms of exposure include headaches, nausea, and diarrhea. Naled is more toxic when exposure occurs by breathing contaminated air than through other kinds of exposure. In laboratory tests, naled exposure caused increased aggressiveness and a deterioration of memory and learning.

Special Susceptibility

Malnourished individuals may be particularly susceptible to naled poisoning. Researchers from the Institute of Hygiene and Occupational Health (Bulgaria) studied naled’s effects on rats that were fed a low-protein diet and found that naled was almost twice as toxic to them as it was to rats fed a normal diet. In addition, the rats fed a low-protein diet developed liver damage from their naled exposure.

Naled’s breakdown product DICHLORVOS (another organophosphate insecticide) interferes with prenatal brain development. In laboratory animals, exposure for just 3 days during pregnancy when the brain is growing quickly reduced brain size 15 percent.  https://www.ncbi.nlm.nih.gov/pubmed/8065512 

DICHLORVOS also causes cancer, according to the International Agency for Research on Carcinogens. In laboratory tests, it caused leukemia and pancreatic cancer. Two independent studies have shown that children exposed to household “no-pest” strips containing dichlorvos have a higher incidence of brain cancer than unexposed children.

Aerial applications of naled can drift up to one-half mile. According to the U.S. Environmental Protection Agency, naled is moderately to highly toxic to birds and fish. It also reduced egg production and hatching success in tests with birds and reduced growth in tests with juvenile fish. convulsions, paralysis, and death.”

The nospray.org website above has much more on Naled than I copied here.  Please see the website for details.

https://www.sott.net/article/324189-For-your-Zika-protection-Florida-to-spray-neighborhoods-with-microcephaly-causing-insecticide  “As Activist Post’s Bernie Suarez has previously reported, it still has not been proven that microcephaly — a birth defect that causes babies to be born with abnormally small heads and the new big concern from zika — is even officially caused by zika.  All evidence thus far is entirely circumstantial, as even Director-General Maraget Chan of the World Health Organization has gone on the record to state. In fact, decades of scientific literature show zika is largely benign…. Could this have anything to do with the fact that the GM mosquitoes purposefully released over Florida to combat Dengue fever aren’t dying off the way they were supposed to?”

https://www.sott.net/article/311265-Could-there-be-a-link-between-the-release-of-genetically-modified-mosquitoes-and-the-Zika-virus  The possible mosquito in the ointment (pun intended) could be the involvement of tetracycline.  The actual mechanism that kills larvae only works if tetracycline is not present during its development.  

“According to an unclassified document from the Trade and Agriculture Directorate Committee for Agriculture dated February 2015, Brazil is the third largest in “global antimicrobial consumption in food animal production” — meaning, Brazil is third in the world for its use of tetracycline in its food animals.”  

A confidential 2012 internal Oxitec document divulged that survival rate could be as high as 15% — even with low levels of tetracycline present. “Even small amounts of tetracycline can repress” the engineered lethality. The 15% survival rate was described by Oxitec:

“After a lot of testing and comparing experimental design, it was found that [researchers] had used a cat food to feed the [OX513A] larvae and this cat food contained chicken. It is known that tetracycline is routinely used to prevent infections in chickens, especially in the cheap, mass produced, chicken used for animal food. The chicken is heat-treated before being used, but this does not remove all the tetracycline. This meant that a small amount of tetracycline was being added from the food to the larvae and repressing the [designed] lethal system.”

Whoops.

While the exact relationship of GMO bugs and Zika is not known, there are many questions that remain.

 

Category:

Activism, mosquitoes, Viruses