2-DVD Set • $50

2-DVD Set • $50

Learn more about the DVD set

http://wolf.house.gov/uploads/ECRI.Institute.Lyme.1.18.12.pdf

The authors of the letter are Chris Smith, Frank Wolf, and Chris Gibson, all members of United States Congress.

Like it? Create your own at GoAnimate.com. It’s free and fun!

Chicago Tribune Article: http://www.chicagotribune.com/health/ct-met-chronic-lyme-disease-20101207,0,1251072,full.story

My article: http://www.lymebook.com/chronic-lyme-disease-science

That is the theme of the newest Lyme disease book on the market: Healing Lyme Naturally: History, Analysis and Treatments, by Wolf Storl.

Learn more about the book here or purchase it here.

Well, here are a few studies that prove that tick-borne diseases were in fact studied in depth at Plum Island, right around the same time period (early 90′s) as Lyme disease began to take off. You decide what happened…

http://www.lymebook.com/plum-island

http://presspubs.com/articles/2010/03/16/vadnais_heights_press/news/doc4ba0153b5eec0480200174.txt

MINNEAPOLIS — It was a bitter pill to swallow, but members of the Minnesota Medical Practice Board agreed to look the other way when it comes to disciplining physicians who treat chronic Lyme disease with long-term antibiotics.

The resolution circumvents legislation that would protect physicians who prescribe long courses of antibiotics for persistent Lyme patients. At a House committee hearing Feb. 17, a bill by Rep. John Ward (DFL-District 12A) was laid aside to give the state board a chance to find a non-legislative solution to the treatment issue.

The compromise barely passed by a 8-6 vote at the board’s monthly meeting March 13. It basically reads that in the interest of allowing time for science to resolve the issue, the Minnesota Board of Medical Practice (MBMP) voluntarily will take a five-year moratorium on the investigation, disciplining or issuance of corrective action based solely on long-term prescription or administration of antibiotic therapy for chronic Lyme disease.

October 24, 2009
An Open Letter to the Lyme Disease Community Stakeholders

Re: Clarifying the goals of the NeuroEndocrineImmune (NEI) Center™ and the Inclusion of Lyme Disease

Dear Friend in the Lyme disease Advocacy Community:

We are reaching out to you because of the recent developments within the Lyme disease advocacy community that are creating much confusion and misunderstanding of what the NEI Center is all about and what our mission is. We want to clarify false rumors that are being spread via the internet.

The NeuroEndocrineImmune (NEI) Center™ (of New Jersey) is dedicated to research, patient care, education, and community social services for patients with a group of illnesses that affect the nervous, endocrine, and immune systems. The body of current scientific research confirms that these illnesses share commonality and overlap of symptoms, which suggest shared, pathophysiological mechanisms that produce chronic illness in these patients. For example, in recent and in-press publications, researchers have reported that approximately 30% of previously diagnosed chronic fatigue syndrome (CFS) patients test positive for Lyme disease (LD). The Center for Disease Control and Prevention (CDC- William Reeves) at the May 27–28, 2009, CFS Advisory Committee meeting stated that Lyme disease is known to be a potential trigger for CFS. Therefore, if some patients with CFS are treated for LD, their quality of life and health will improve considerably.

The NEI Center™ is dedicated to increasing knowledge, improving patient care, developing new therapies, and serving as a repository and dispenser of scientific information regarding these illnesses. It is not the intent or role of center personnel to classify or reclassify or to name or rename any of these illnesses.

The NEI Center™ is committed to the development of a robust, healthcare community within the State of New Jersey. We believe that any interested party who wishes to mount a research, patient care, educational, or social services program within the state, and who is willing to abide by the laws and safeguards provided by the state and the federal governments, has the right to engage in such activity without the infringement or opposition of another organization.

Representatives of the NEI Center™ believe it is unfortunate and misguided for an alleged patient advocacy group to oppose efforts to enhance research, patient care, education, and community social services for an illness that the patient advocate group claims to represent. The motivation of such a group is suspect.

With regard to recently written materials already being circulated on the Internet and the comments made by a patient advocate group that has gone on record as opposing the inclusion of Lyme disease in the disorders to be studied at the NeuroEndocrineImmune (NEI) Center™, we respond:

• The NEI Center™ (also referred here as the Center) will serve as a repository for all data generated by its investigators and by those researchers who wish to submit their data to the Center.

• The NEI Center™ has not, and will not, address the issue of the classification of any of the illnesses being studied within the center or elsewhere. It is the position of the NEI Center™ that the classification of illnesses (be they diseases or syndromes) is the responsibility of the World Health Organization, which catalogues and classifies the recognized illnesses of the world. (ICD10/ICD9). It would obviously be presumptive of the NEI Center™ to usurp or attempt to alter the work of the World Health Organization.

• The NEI Center™, as does Western medicine, recognizes the distinction between symptomatic treatment and curative treatment of illness. Although curative treatment is the ideal goal of health care, curative treatment is not available for all illnesses. When such treatment is not available, or even if it is available, symptomatic treatment is standard medical procedure. Thus, for a patient with pneumonia, antibiotic treatment may be curative, but such treatment does not preclude the physician from dispensing medication that will ease the patient’s cough or reduce his or her fever.

• The NEI Center™ believes that many neuroendocrineimmune disorders have complex etiologies. Many researchers and physicians feel that long-term, chronic infection will deplete and invoke changes in the immune system. Multiple co-infections are now being found in many chronically infected patients. To preclude the investigation of co-infections in patients with Lyme disease based on the fear that such findings would suggest immune system abnormalities as stated by this patient advocate group in Lyme disease patients (see attachment), does a significant disservice to Lyme disease patients and prevents the freedom of scientific inquiry that is the basis of success in biomedical research and the development of new therapeutic agents and procedures.

• The NEI Center™ maintains that Lyme disease, as well as the other neuroendocrineimmune disorders (NEIDs) that the center embraces, is not currently classified as autoimmune disorders. Unless future scientific research demonstrates otherwise, Lyme disease will always remain in its current class of illnesses and, thus not be included or classified as an autoimmune disorder. However, the current and/or future classifications of Lyme disease do not preclude an autoimmune component from being present in this disease. The NEI Center™ and the biomedical research community should be permitted the right to investigate the possible presence of an autoimmune component in chronic or persistent Lyme disease (PLD) or the induction of autoimmune defects in persons exhibiting chronic or PLD.

• The NEI Center™ believes that the inclusion of Lyme disease in the center’s mission will accelerate research and the development of therapeutics for patients with LD as well as speed up research and development of therapeutics for illnesses with shared and overlapping symptoms.

• The concept and mission of the NEI Center™ is a scientific, medical, pharmaceutical, and patient-driven grassroots initiative that aim for quality of life solutions for a large population of Americans that for far too long have been forgotten and underserved within our current medical system. The overall concept of the NEI Center’s mission is already fully supported by administrators within the CDC, the National Institutes of Health (NIH), and the Vermont Department of Health.

• The NEI Center™, as proposed, complies with the new biomedical research model being promoted by the NIH and will stand as an example of the implementation of its Roadmap Initiative.

• The enhanced and accelerated study of neuroendocrineimmune illnesses, including Lyme disease, at the NEI Center™ can only improve the knowledge of and therapeutics for all these illnesses. There are no negative aspects to the inclusion of any related illness in the mission of the NEI Center.

The inclusion of Lyme disease within the illnesses that the Center will investigate will address and enhance the efforts not only to prevent but possibly to eradicate Lyme disease. The passage of this resolution is in reality a moral and significant victory not only for the citizens of the great State of New Jersey, who are currently suffering with the devastating consequences of persistent or chronic Lyme Disease, but will also impact the entire country. The passage of this resolution will be an additional, welcoming lifeline for the Lyme disease patient community.

For far too long healthcare challenges have silenced the voices of many enduring chronic or persistent Lyme Disease, as well as the other illnesses that the Center embraces. Passage of this resolution in its entirety will certainly enhance and give these individuals a strong voice, allowing them to act as agents for change within their own community, and the opportunity to truly make a difference for others, their families and more importantly for themselves. To us, the founders of the NEI Center™, we strive for these results and we view them as priceless.
In Good Health,

Sandi Lanford                    
Sandi Lanford                          
Founder & President, The Lanford Foundation – Lifelyme, Inc.
Director at Large – P.A.N.D.O.R.A.
www.lifelyme.org
Marly “Marla” C. Silverman
Marly C. Silverman
Founder, P.A.N.D.O.R.A.
www.pandoranet.info 
You can direct additional questions you may have to either
Dr. Kenneth J. Friedman at friedman@umdnj.edu
Or Lifelyme Inc., at lifelyme@yahoo.com
The Lanford Foundation – Lifelyme, Inc.
Tallahassee, FL
www.lifelyme.org

Disclaimer:
The mission of  “THE LANFORD FOUNDATION – LIFELYME, INC., is to provide educational information for anyone interested in tick-borne diseases, chronic infectious, systemic diseases and related disorders.  Information presented is intended only for educational exchange.  This information is not offered by LIFELYME as medical advice for anyone. 

 
Sandi Lanford, Founder/President
The Lanford Foundation – Lifelyme, Inc.
Tallahassee, FL
www.lifelyme.org

Disclaimer:
The mission of  “THE LANFORD FOUNDATION – LIFELYME, INC., is to provide educational information for anyone interested in tick-borne diseases, chronic infectious, systemic diseases and related disorders.  Information presented is intended only for educational exchange.  This information is not offered by LIFELYME as medical advice for anyone. 

According to the Connecticut Post:

Thursday the state House of Representatives took a strong stand on the issue. In a 137-0 vote, members passed legislation to reassure doctors they will not face retaliation if they choose to diagnose chronic Lyme disease and treat it with long-term antibiotics.

Source: http://www.connpost.com/ci_12267343

This will hopefully be the first domino to fall in what will likely turn out to be a series of wins for chronic Lyme treating physicians and patients. I’ve written about this topic before and am glad to see this development!

Bryan Rosner

When will this end.

Bryan

—–

Abstract:

Science, Politics, and Values
The Politicization of Professional Practice Guidelines

John D. Kraemer, JD, MPH; Lawrence O. Gostin, JD

JAMA. 2009;301(6):665-667.

The Infectious Diseases Society of America (IDSA) issued updated clinical practice guidelines in 2006 for the diagnosis and treatment of Lyme disease.1 Within days, the Connecticut attorney general launched an investigation, alleging IDSA had violated state antitrust law by recommending against the use of long-term antibiotics to treat “chronic Lyme disease (CLD),” a label applied by advocates to a variety of nonspecific symptoms for which frequently no evidence suggests the etiologic agent of Lyme disease is responsible. The IDSA was forced to settle the claim to avoid exorbitant litigation costs, even though the society’s guidelines were based on sound science. The case exemplifies the politicization of health policy, with elected officials advocating for health policies against the weight of scientific evidence.

The Antitrust Investigation of IDSA

Although untreated or inadequately treated Lyme disease can progress to cause neurological complications and arthritis, there is no evidence the…  full text: http://www.mimosabridalaz.com/Science%20Politics%20and%20Values.pdf

Author Affiliations: O’Neill Institute for National and Global Health Law, Georgetown University, Washington, DC.

Text of the bill:

General Assembly
    Proposed Bill No. 5625
   
January Session, 2009
    LCO No. 869 
     
Referred to Committee on Public Health
   
Introduced by:
   
REP. FAWCETT, 133rd Dist.

REP. GODFREY, 110th Dist.

REP. HORNISH, 62nd Dist.

REP. LYDDY, 106th Dist.

REP. REEVES, 143rd Dist.

SEN. MCKINNEY, 28th Dist.
 REP. TABORSAK, 109th Dist.

REP. TONG, 147th Dist.

REP. BYE, 19th Dist.

REP. HURLBURT, 53rd Dist.

REP. HWANG, 134th Dist.

REP. DREW, 132nd Dist.

AN ACT CONCERNING THE USE OF LONG-TERM ANTIBIOTICS FOR THE TREATMENT OF LYME DISEASE.

Be it enacted by the Senate and House of Representatives in General Assembly convened:

That the general statutes be amended to provide that: (1) A physician may prescribe, administer or dispense antibiotic therapy for therapeutic purpose to a person diagnosed with and having symptoms of Lyme disease if a diagnosis and treatment plan has been documented in the physician’s medical record for that patient; and (2) no physician may be subject to disciplinary action solely for prescribing, administering or dispensing long-term antibiotic therapy for a therapeutic purpose for a patient clinically diagnosed with Lyme disease, if a diagnosis and treatment plan has been documented in the physician’s medical record for that patient.

Statement of Purpose:

To allow physicians to prescribe, administer or dispense long-term antibiotics for therapeutic purposes to patients clinically diagnosed with Lyme disease.

I urge ALL OF YOU to support this doctor in whatever way you can, be it financially, politically, writing letters, or contacting relevant organizations and/or spreading the word.

We are living in dark, dark times. It almost feels like a bad dream – a nightmare. I hope very much that I live to see the day when Lyme doctors are vindicated.

Here’s the link:

http://tinyurl.com/help-llmd

It is with a sad heart that I go to sleep now.

Bryan Rosner

His legal battles have been ongoing and brutal. He releases various press statements to alert his supporters of the latest progress. This blog post shares one such press statement.

Please do what you can to support Dr. Jones, who is a hero.

For Distribution:

The next session before the Connecticut Medical Examining Board will take place on Tuesday, June 10, 2008 at 9:00 a.m. at the Department of Public Health located at 410 Capitol Avenue, Hartford, CT., Hearing Room C. At that time, the Department will finish its examination of Dr. Zemel, its expert witness, and Attorney Pollack is scheduled to cross-examine him.

At the last session on May 9, we heard testimony from one of the fathers involved in the current set of charges against Dr. Jones. The other witness who was scheduled to testify was Dr. Harwin, the retired pediatrician who had served as the expert in pediatrics for the Department of Public Health (DPH) in the last case. He did not appear, however. We learned from Attorney Tilles, the prosecutor for the CT DPH, that Dr. Harwin will not testify at all in this case. Those of us who were able to attend this previous session were struck by some of the insightful questions asked by the hearing panel.

Dr. Jones extends a warm invitation to all who are interested to attend the next hearing session on June 10. For those of you who aren’t able to make the trip, please know how very much he appreciates your support and good wishes from afar.

For those of you who can’t attend in person and would like to support Dr. Jones, a number of opportunities currently are available for contributing to the Charles Ray Jones, M.D. Legal Defense Fund:

1. Purchase a book or other item from Amazon.com by accessing the link through Kay Lyon’s website, and 4% of your total purchase will be donated to Dr. Jones’ fund: http://www.lymesite.com/amazon%20fundraiser.htm

2. Book signing and sale of Cure Unknown by Pamela Weintraub, science journalist: hosted by Drs. Russell Donnelly, Sheila Statlender and Family on Saturday, June 7, 2008 from 1:30 to 4:30 p.m. 50% of the proceeds from book sales at this event will go to Dr. Jones’ fund. For those who can’t attend, it will be possible to order a copy which we will mail to you. Watch for more information, or email SStatlende@aol.com to place an order for this book.

3. Donate directly to the Charles Ray Jones, M.D. Legal Defense Fund (note new instructions below):

Make Donations payable to ” Pullman & Comley Trust Account-for Dr. Charles Jones”
Mail to:
Elliott Pollack
c/o Pullman & Comley, LLC
90 State House Square
Hartford, CT 06103-3702

Note “gift” in the memo field

2) A WEBSITE FOR DR. JONES IS NOW READY TO TAKE PAYPAL
CREDIT CARD CONTRIBUTIONS TO THE DEFENSE FUND.
http://www.DefendLymeDoctors.com

July 9, 2008 Update:

Please share this with everyone you know ASAP and ask them to help Dr. Jones, for the sake of the children with Lyme who need him.  Don’t let the IDSA win this war and shut him down, please.