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Lyme disease news

Lyme doctor punished for helping children

Pediatrician and hero to many moms and kids with Lyme disease, Dr Charles Ray Jones is being "harassed" by the medical community for treating Lyme disease, says state Rep. Jason Bartlett (D-Bethel).

Bartlett sponsored a bill that was passed unanimously by Connecticut State Legislature in 2009 that protects doctors who treat chronic Lyme with antibiotics over extended periods. But although it may protect doctors in the future, it's not doing anything to protect Dr Jones right now.

"The law 'allow[s] a licensed physician to prescribe, administer or dispense long-term antibiotics for a therapeutic purpose to a patient clinically diagnosed with Lyme disease.'"

Jones has been ordered  to hire a monitor to examine his patients charts every month, given four years of probation and smacked with a $10,000 fine. Jones expects the monitor may cost $2,000 - $10,000 per month. He says "it's hopeless," because he simply cannot afford it. But what really burns up his supporters is that the good doctor appears to be the mouse in a game of legal cat-and-mouse being played out at his expense.

In a New Haven Advocate article from July 13, Time Is Running Out For Controversial Chronic Lyme Disease Doctor Betsy Yalga writes,

"None of Jones’ patients has complained, he’s quick to point out, and none has been harmed by his treatment. He’s never been sued for medical malpractice. The charges against him have been levied by fathers involved in custodial battles over their children. In those cases Mom was in charge of treatment and Dad was in charge of payment and disputed the need for treatment. By complaining, Jones’ supporters say, Dad could get back at Mom and possibly skirt paying a costly medical bill. There were no allegations of harm done to the children."


Please listen to a brief interview with Dr Charles Ray Jones in the member’s portal.
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IDSA submits letter to Waxman

Things are heating up in Washington DC as the July 30 hearing approaches.

Below is an excerpt from a letter written on June 25, 2009 and sent by the IDSA to US Representative Henry Waxman, Chairman of the House Energy & Commerce Committee. In it, the IDSA makes clear that it opposes the bill regarding Lyme disease treatment (H.R. 1179), which was recently reintroduced in the House of Representatives.

Here is a partial excerpt:
We believe it is important that Members of Congress who are considering co-sponsorship of H.R. 1179 be fully apprised of IDSA’s view, which is aligned with the broader medical and scientific communities’ view, that the long-term use of antibiotics for the treatment of Lyme disease is unproven and potentially harmful to the patients being treated and to the public’s health (due to the potential creation of drug-resistant organisms).

Further, it is IDSA’s position that no reliable evidence exists that supports the designation of Lyme disease as a chronic disease. Two recent reviews -- one published in the New England Journal of Medicine (N Engl J Med 357:14; October 4, 2007) and the other in the American Journal of Medicine (2008) 121, 562-564 -- give evidence-based assessments of Lyme disease diagnoses and the recommended treatments which substantiate our position.
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MSNBC prints story of Lyme suicide

MSNBC has posted a heartrending story by NBC news producer John Baiata about the suicide of his beloved sister Sue, who could no longer bear the pain she suffered from chronic Lyme Disease. Our thanks goes out to the Baiata family and to MSNBC for sharing this painful story. I urge our readers to drop them an email thanking and supporting them for helping us bring this issue to the greater public.

I know I'm not the only one of us who was moved (to tears) also by the overwhelming number of intense responses to the story. Among them was a statement by Pat Smith, reminding readers that children are at the greatest risk for Lyme, and that a valuable bill in support of Lyme disease research is still mired in political muck. Here is a partial quote of her comment:

"Another Congressman, Christopher Smith (NJ), who introduced the bill, HR 1179, said last year on the floor of the House, regarding Lyme disease, there is a "cover-up.” We echo that 1000 times over. MSNBC, I hope you will put all the power and resources you possess behind exposing that cover-up soon, as children ages 5-9 and 10-14 are at the greatest risk of acquiring Lyme disease, and the prevailing attitude is allowing government agencies to remove children from mothers who are having them treated with ANTIBIOTICS for Lyme disease by LICENSED physicians.

Meanwhile, our heartfelt sympathy goes out to the Baiata family. Many of us have experienced preventable suffering and tragedy due to this disease. However, the tragedy is usually not due to Lyme disease itself but to politics, cover-up, vested interests, and bias, often a much bigger threat than the Borrelia burgdorferi organism causing Lyme disease, which we could overcome if the cover-up were exposed fully in the light of day."


- Quoted from MSNBC.com article by John Baiata, All she lost: My sister's battle with Lyme disease, from a comment made by Pat Smith, President, Lyme Disease Association
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Good Morning America, where's the Lyme story?

Where's the story? I know I wasn't the only one who was sorely disappointed to see that Good Morning America did not air the Lyme segment. Let's give them the benefit of the doubt, and assume that due to a programming snafu, they rescheduled. Please use this link to the ABC News contact form. Let them know that you - and your family and friends - all want to see it.
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Breaking News: IDSA guidelines under scrutiny

"Serious flaws in the IDSA's process for writing its 2006 Lyme disease guidelines" have been revealed during an antitrust investigation conducted by Connecticut Attorney General Richard Blumenthal. Reassessment of the guidelines must now take place with an outside arbiter and a "conflicts-free panel." The subsequent hearing is also required to be broadcast live on the IDSA's website.

Turns out it's not nice -- or particularly legal -- to stack the panel with people who stand to make loads of cash from drug and insurance companies, Lyme disease diagnostic tests and patents. Stay tuned for developments. It's bound to get wild in the coming weeks and months, especially with IDSA-loving Dr. Gary Wormser shrugging off the investigation and calling it "absurd." Conflicts? What conflicts?

This significant turn of events could soon impact your ability to get proper treatment. Meantime, we'll continue to interview physicians who specialize in Lyme and who can give us the inside scoop and help us understand the ramifications of the reassessment.

Please become a member to hear upcoming interviews with Lyme experts on this issue.

Read the IDSA's press release.
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DOH wants your Lyme story

Want to tell the Pennsylvania Department of Health about your personal experiences with Lyme disease treatment? The Lyme Disease Task Force wants to hear from you. Linda Wales, co-leader of Lyme patient rights group NYPenn Lyme Disease Support Group, posted this letter to the editor of the Star-Gazette.com this morning:

Task force seeks input on Lyme disease
January 4, 2008

It is time for Lyme disease patients to be heard.

The Pennsylvania Department of Health established a Commonwealth Lyme Disease Task Force in 2007 to examine issues and draft recommendations regarding Lyme disease. It was decided feedback from Lyme disease patients is needed. NYPenn Lyme Disease Support Group received notification this task force will host a public hearing from 1 to 4 p.m. Tuesday at the Keystone Building, Hearing Room 1, on Forster Street and Commonwealth Avenue in Harrisburg, Pa. Everyone is welcome; there will be question-and- answer sessions.

They recognize how important it is to receive a wide range of feedback and realize it would be impossible for many Lyme sufferers to attend. Therefore, letters explaining experiences with tick-borne diseases will be accepted through Jan. 31.

Please send to Dr. James Rankin, Pennsylvania Department of Health, Room 933, 7th and Forster Street, Harrisburg, PA 17120 or fax to (717) 772-6975.

Questions may be directed to Dr. James Rankin by telephone at (717) 787-3350.

Lyme disease is quickly becoming a serious health problem in Pennsylvania (and nationally). If you choose to remain silent or think you need to do nothing because someone else will, the Department of Health could believe it is no big deal and may drop the issue.

Linda Wales
Co-leader, NYPenn LDSG
Millerton, PA
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Lifelyme conference in January

We would like to share the following with you, regarding an upcoming conference for doctors and others dealing with Lyme and other chronic illnesses.

Dear Friend,

Lifelyme is pleased to announce we are jointly sponsoring a one day Lyme conference at the Vinoy Resort in St. Petersburg, Florida on January 19th, 2008. Enclosed is a copy of our brochure. If you would like us to send you additional brochures please email or call me.

The title of our conference is:
"Similarities and Paradoxes in Chronic Illnesses".

This conference is bringing together some of the top Lyme and CFIDS doctors to share the latest information on these diseases. Registration can be made on the Internet at the University of South Florida website set up specifically for this purpose.

Go to: www.cme.hsc.usf.edu/lyme

This is a medical conference jointly sponsored by University of South Florida Medical College, Morton Plant Mease and The Lanford Foundation - Lifelyme, Inc. CME - Continuing Medical Education credits are being offered for health care practitioners. Please share this information with your physicians.

Registration fee: $150.00 Les Roberts Author of the Poison Plum will be selling/signing books at the event!
Fee includes a Buffet Lunch at the Renaissance Vinoy Resort


Questions or Additional Information call:
The Office of Continuing Professional Development
(813-974-4296) or (800-852-5362)
or email: jahartfi@health.usf.edu

Looking forward to seeing you at the conference.

Warmest Regards,



Sandi Lanford, Founder/President
The Lanford Foundation - Lifelyme, Inc.
(850) 906-9108
www.lifelyme.org
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