joe the tick

February 12, 2010

Letter & update from Dr Jones

Filed under: Lyme Disease, Lyme Disease Fundraisers, Lyme Disease News, Lyme Fighters, Lyme Law — Tags: , — joethetick @ 7:43 pm

Dear Friends,

It is time to update you once again on the status of the charges that I have been fighting before the Connecticut Medical Examining Board (CMEB). I cannot thank you enough for the many expressions of support and encouragement that you have been sending my way over the past several months. These have made a huge difference to me, enabling me to maintain my determination to prevail.

I also extend a hearty invitation to you to attend the next meeting of the CMEB, which will take place
on February 16, 2010 at 1:30 at the Department of Public Health Complex, 470 Capitol Avenue, Conference Room C, Hartford, CT 06134. At that time, the Board will vote on the recommendations of the panel which has been hearing the most recent set of charges brought against me.

History and Overview
In this update, I will focus on the most recent developments in what has become a long series of charges and investigations by the CMEB and Connecticut Department of Health (CT DPH). For more detailed background information, I refer you to my letter dated September 5, 2008 , which is posted on the following website: www.lymesite.com

Currently, there have been two separate and distinct cases against me. The original case is under appeal, and the second case pertains to a new set of charges regarding a different set of patients.
In addition to this, we have learned that the court-appointed monitor has brought a number of complaints about me to the CMEB, which appear to be based on his reliance on the IDSA guidelines as the alleged “gold standard” for the diagnosis and treatment of Lyme disease. These currently are under investigation, but at this point no formal charges have been filed in relation to them.

First case:
I was brought up on a series of charges pertaining to two children from one family in Nevada, whose parents were involved in a post-divorce decree custody dispute. The children involved in the case were doing quite well and there was no allegation of harm done to either of them as a result of their treatment.
In its decision of December, 2007, the Connecticut Medical Examining Board (CMEB) imposed a $10,000 fine, a reprimand and two years of monitored probation. Despite these disappointing recommendations, this case was not lost. My license to practice medicine was not suspended or limited.

However, the CMEB introduced a very restrictive four part standard of care for Lyme disease at the very end of the proceedings. Left unopposed, this test would set a very dangerous precedent, and could be used against other doctors to shut down the treatment of chronic Lyme disease. It clearly had to be appealed.

Appeal of the First Case:
Most of the charges that I was found “guilty” of were stayed, or suspended, pending the outcome of the appeal, including the four part standard of care. The one exception was the monitoring requirement. I was required to find and pay for a board-certified pediatrician, licensed in the state of Connecticut, to conduct periodic chart reviews at my office for a period of two years. This was not an easy task: We contacted over 80 pediatricians before the current monitor was found; he was then approved by the CT
DPH.

The grounds for the appeal have been described in my previous letter. One of them pertains to the discovery of significant bias on the part of one of the panel members, Dr. Senechal, who was recognized by a set of parents who filed affidavits stating that he had expressed very significant bias against me and other Lyme literate physicians, including the statement that doctors who treat Lyme are quacks. A
hearing was held in Superior Court to review the question of the panel member’s bias. The judge rejected our arguments. The case is now on appeal to the Connecticut Appellate Court; the brief in support of my position is due in April.

Current case(s):
The Department of Public Health then filed another series of complaints against me. This set of charges differs from the first case in that it involves three separate families, with the respective cases conjoined into one proceeding. Although the exact facts differ, the cases are similar in that two of them involve
non-custodial fathers filing complaints.

In none of the cases were any of the children involved harmed; indeed, as with the first case, the children all are doing very well.The CT DPH called on Dr. Lawrence Zemel and Dr. Peter Krause to provide expert testimony contesting my treatment.Following lengthy hearings concluding last May, a
three-member panel has issued its “proposed memorandum of decision” (MOD). This will be voted on by the CMEB on February 16, following the presentation of oral arguments by both attorneys:

* The third count involving one of the families was completely dismissed.
* The testimony of Dr. Zemel was thrown out, with the panel characterizing him as clearly biased against physicians who treat chronic Lyme, and against many of the labs that they use.
* The first count was upheld: this pertained to the charge that I had “improperly” ordered serology (diagnostic) testing prior to examining the patients. This seems strange, because, as far as we know, there were no patient complaints or patient harm. It is also difficult to comprehend why pre-examination testing should ever be the basis of disciplinary action against a
physician.
* The second count against me also was upheld. The issue here was the prescription of antibiotics to a patient whose symptoms were quite consistent with both Lyme and Babesiosis. I had obtained a comprehensive history from the referring practitioner who had contacted me about the case, and also from the patient’s mother. An ER had recorded an EM rash that went untreated My schedule was so heavily booked that I could not see the patient for a number of weeks. I was confident that the patient should be started on antibiotics immediately, and that the risk of not treating would be greater than the risk of treating. The patient did well.

In this case, the panel has denied that charges have been brought against me because I am a Lyme specialist. Instead, it has characterized its findings as generic and pertaining to medical practice as a whole. This is why we have not been able to utilize the recently passed physician protection bill in Connecticut.

Nevertheless, it is rather difficult to understand why such matters should have ever reached this level, or why their two expert witnesses were specialists in tickborne diseases. There have been no patient complaints, other than disaffected fathers involved in contested custody or divorce proceedings, and no harm has come to any of the children, who in fact have done well.

Once again, the panel has not recommended that my medical license be revoked. They have, however, recommended the following sanctions:

* Another $10,000 fine
* Four years of supervised probation, with a monitor again hired at my own expense

Why I Continue to Fight:
Some of you have expressed dismay that the Connecticut Department of Public Health has spent so much taxpayer money on these charges. You have been concerned that they will continue to bring charges against me until I am forced to close my office. This process has been undeniably stressful. It has been painful to see so much time, energy and valuable resources being expended on my defense. I continue to believe, however, that it is critical for me to continue to fight these charges and to prevail:

We must stand up for what we believe and know to be right in the matter of diagnosis and treatment of tick borne disease.
I am painfully concerned about the lack of effective care for children afflicted with tick borne disease. Because I decided to fight these charges when all of this began some six years ago, several thousand additional pediatric Lyme patients have received an appropriate diagnosis and treatment for their
tickborne disease.
A successful outcome for me will both hearten and protect other physicians who wish to diagnose and treat Lyme disease comprehensively, and will encourage other pediatricians in particular to train with me.
We must send a clear message to health departments across the country that we will not be bullied, or allow our right to medical treatment to be trampled.

Legal Fees:

I continue to be grateful for the excellent defense that Attorney Elliott Pollack has been providing, and to everyone who has made this possible through donations to my legal defense fund. Please note that Attorney Pollack has achieved some significant victories: my license has not been revoked and, most recently, the decision to throw out the testimony of Dr. Zemel on the grounds that he is biased, will most likely put an end to his usefulness as an expert witness in proceedings against other LLMD’s. The legal
representation necessary to oppose these charges has been very extensive and complex:

* multiple hearings have been held, each of which have required considerable preparation and review;
* many hours have been spent helping witnesses to prepare to testify;
* the filing of the appeal has been time-consuming but essential, and has entailed multiple appearances on the part of my attorneys in Superior Court, including three pretrial sessions.
* New charges have been levied by the monitor which need to be addressed
* Preparation and presentation of the oral argument which will be presented to the CMEB on February 16, after which they will vote on the proposed MOD.

This struggle has been costly, and I will continue to require your financial support in order to prevail. We have known from the outset that Pullman & Comley does not provide pro bono legal services, and Attorney Pollack is accountable to the partners in his firm. To date, the cost of my legal defense over these past six years has amounted to approximately $700,000, most of which has been funded by donations to the legal defense fund. It is extremely painful to think of the resources of the Lyme community being spent in this way. At the same time, it is important to recognize that these charges are not unusual or excessive for a legal defense that has been as complex and lengthy as mine has been. There is a current outstanding balance of approximately $80,000. This will increase over the next few weeks as a result of the ramped up legal activity that will be necessary to address the CMEB decision, the monitor’s complaints and the ongoing appeal.

Ordinarily, Pullman & Comley does not allow clients to carry an unpaid balance on their account. They have been impressed by the stream of donations that so many of you have been sending, and have been unusually flexible in this regard. Each time that the unpaid balance grows, however, my legal representation is in jeopardy. It is necessary to demonstrate once again that the legal defense fund is solvent, and will be able to meet the cost of my legal defense.

Because of this, I am asking you to make a donation to my legal defense fund, in whatever amount that your circumstances will permit. I hope that you will continue to find the means to support this fight, despite the hardships which I know that so many of you already live with.

The current instructions for donating to my legal defense fund are noted below. These instructions also are posted on Kay Lyon’s website:

http://lymesite.com/Dr_Jones_use_paypal_to_make_donations_to_.htm

For those of you who may have additional questions not answered by this update, I invite you to send them to me by letter or by fax: 203-772-0682. Please reserve for telephone calls for urgent matters only, given the very high volume of patient calls that the office receives.

With warmest wishes,
Dr. Jones
Charles Ray Jones, M.D.

HOW TO DONATE TO THE LEGAL DEFENSE FUND:
Make Donations payable to: ” Pullman & Comley Trust Account-for Dr. Charles Jones”
Mail to:
Elliott B. Pollack, Esquire
c/o Pullman & Comley, LLC
90 State House Square
Hartford, CT 06103-3702

Note “gift” in the memo field
To use PayPal to donate to the defense fund, go to the following web address:
http://lymesite.com/Dr_Jones_use_paypal_to_make_donations_to_.htm

Temple Douglas, Intel finalist for Lyme disease research

Filed under: Lyme Disease, Lyme Disease News, Lyme Disease Research, Lyme Fighters — Tags: , , , , — joethetick @ 11:12 am

Temple Douglas of Thomas Jefferson High School for Science and Technology has proposed a faster way to test for Lyme disease.

By Holly Hobbs
Fairfax County Times
Thursday, February 4, 2010

A high school senior’s research paper on Lyme disease is getting national recognition for proposing a method of early detection that cuts diagnosis time from a month to mere minutes.

“We’re going to develop a new diagnostic test so that we can detect it earlier and more accurately,” said Temple Douglas, 18, of Thomas Jefferson High School for Science and Technology in Alexandria.

Douglas was recently named one of 40 finalists nationwide in the Intel Science Talent Search, an annual contest sponsored by Intel that scouts for research conducted by high school seniors in science, health and technology.

She received a $5,000 scholarship for the ranking, a laptop and a chance to compete in March in Washington for a $100,000 scholarship.

Douglas said her research was inspired by three relatives’ struggles with Lyme disease.

“My sister and brother had joint pain, but my mom had more severe symptoms,” she said.

Almost half the cases of Lyme disease in Virginia are reported in Loudoun County, where Douglas lives. A resident of Lucketts, she buses 90 minutes to her Fairfax County school each day.

Students at Thomas Jefferson must do a senior research paper. Douglas chose Lyme disease for hers.

“At the end of the summer, I was thinking of the testing and its inaccuracies and what could be improved,” she said.
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Currently, blood tests are used to detect Lyme disease.

“Now, you have to wait for antibodies to show up [in your blood]. That can take up to three weeks,” Douglas said.

Her research paper, “The Application of Hydrogel Nanoparticles for Early Lyme Disease Diagnosis,” proposes using a urine test instead.

“Nanoparticles are added to the urine to allow you to see the bacteria,” she said.

Staff and teachers at Thomas Jefferson said they are not surprised by Douglas’s successful ranking.

“As a student, Temple was very inquisitive and enthusiastic,” said teacher Robert Latham, the school’s science and engineering fair coordinator. “The choice of what to do after high school or college rests with Temple, but from the experience gained in her scientific project work and from the maturity developed in writing a scholarly scientific research paper, she has demonstrated high-level skills that would make her very successful as a research scientist or in a related field.

“I would like to see her win a Nobel prize.”

Douglas has been accepted to several colleges, including the Massachusetts Institute of Technology.

Principal Evan Glazer had similar praise for Douglas, saying, “Her work is inspiring because she pursued groundbreaking work in a topic that could help her family.”

Twelve of Douglas’s fellow students were named semifinalists in the contest this month, each receiving a $1,000 prize for themselves and $1,000 for their school.

Last year, two Jefferson students were finalists in the Intel competition, Alexander Kim and Narendra Tallapragada.

Of the D.C. conference in March, Douglas said she is excited and nervous to compete, adding that she would find it “neat” to meet President Obama.

“The kids last year got to meet Obama,” she said.

Douglas said she hopes to one day assist in the efforts to find a cure for cancer.

November 21, 2009

Nurses with Lyme disease Form Southern Oregon Lyme Disease Support Group

Filed under: Lyme Disease, Lyme Disease News, Lyme Fighters — Tags: , , , , , , — joethetick @ 3:49 pm

By Bill Kettler
Mail Tribune

Put two nurses with 70 years of combined experience in the same room and chances are they’ll find plenty to talk about.

When both have Lyme disease, the conversation transcends the usual shop talk.
The first meeting of the Southern Oregon Lyme disease support group has been scheduled for 6:30 to 9 p.m. Thursday in the Smullin Center, Room 35, Rogue Valley Medical Center, 2825 E. Barnett Road, Medford.

For more information, call 944-5068 or 879-0222. For general information about Lyme disease in Oregon, contact the Oregon Lyme Disease Network at 541-312-3081 or visit the Web site at www.oregonlyme.org.

Sharon Lee of Eagle Point was infected some 30 years ago in California, when nobody on the West Coast knew much about the strange tick-borne disease that’s difficult to diagnose and produces a wide range of symptoms among its victims.

When Judi Johnston of Ashland came down with Lyme during the past year, she realized the Southern Oregon medical community still knows relatively little about the disease.

“I don’t know what made me more upset,” Johnston says. “Personally, not being able to find the (treatment) resources, or professionally, knowing the resources aren’t here.”

Lee and Johnston plan to use their nursing experience and training to assist Rogue Valley residents who may not even know they have Lyme disease. They’re organizing a support group to help local people determine whether they’re infected, and steer them to physicians who can give them appropriate care.

“There’s far more Lyme disease than is being recognized,” says Johnston, a nurse for more than 30 years. “And we don’t have Lyme-literate physicians in this part of the country.”

The group’s first meeting is scheduled for Thursday at the Smullin Center on the campus of Rogue Valley Medical Center.

The bacterium that causes Lyme disease is transmitted to humans by certain species of ticks, including the blacklegged tick (Ixodes pacificus), which thrives in Southern Oregon and California. The bacterium is also carried by tick nymphs, which are so tiny people often fail to realize they may have been bitten.

Johnston says she “never did see the tick,” that infected her.

Lee describes the bacterium itself as “a stealth organism” that evades the body’s natural defense mechanisms. If it establishes itself in the body over time, “your immune system can’t even find it,” she says.

Symptoms vary widely from person to person. The bacterium may attack the joints, the heart, the brain or other parts of the nervous system. Lyme has been confused with a number of other diseases, including multiple sclerosis, fibromyalgia, chronic fatigue syndrome, amyotrophic lateral sclerosis and even Alzheimer’s.

“Some people can be sidelined and in a wheelchair,” says Lee, who retired to Eagle Point after 45 years in nursing. “Others can respond (to treatment) and do pretty well.”

Ticks often carry a number of other infectious agents, and Lee says researchers now believe the wide variety of symptoms associated with Lyme may be related to those other tick-borne diseases.

She says early diagnosis is critical for effective treatment, but tests don’t always provide conclusive proof of infection. Some people produce a rash with a characteristic bulls-eye pattern soon after they’re infected, but others may not, further complicating the diagnostic process.

Lee says she and Johnston hope to recruit a local physician who might be willing to learn more about Lyme disease so that local people can get effective treatment without traveling to California.

“We want this to be more than a support group,” Johnston says. “We want to educate people, too.”

Reach reporter Bill Kettler at 776-4492 or e-mail bkettler@mailtribune.com

November 14, 2009

Sara Marie’s Lyme Disease Story

Filed under: Lyme Disease, Lyme Fighters, Lyme Stories, Lyme Videos — Tags: , — joethetick @ 8:55 pm

Timothy Grey invites Dr. Allen Steere to see “Under The Eightball”

Filed under: Lyme Disease, Lyme Disease Documentary, Lyme Fighters, Lyme Videos — Tags: , , , , , — joethetick @ 8:25 pm

Director Timothy Grey invites Dr. Allen Steere to see his new film “Under The Eightball“. A documentary about the Origins of Chronic Lyme Disease.

October 26, 2009

Alzheimer’s & Lyme Disease: Is there a connection?

Filed under: LLMDs - Lyme Literate Doctors, Lyme Disease, Lyme Fighters — Tags: , , , , , , — joethetick @ 1:57 pm

Alan MacDonald discuses with the Lyme Disease Research Database founder his research looking into a connection between Alzheimer’s and Lyme disease.

Dr. Daniel Cameron’s Lyme Disease Seminar Introduction (Brookfield, CT. – Oct 6, 2009)

Filed under: LLMDs - Lyme Literate Doctors, Lyme Disease, Lyme Fighters — Tags: , , , , , , , , , , , — joethetick @ 11:12 am

This is the introduction to a seminar on Lyme disease which was held at the Candlewood Inn, Brookfield, CT, on October 6, 2009. It featured Dr. Daniel Cameron, the current Presidents of ILADS (International Association of Lyme and Associated Diseases) and Dr. Steven Phillips, its past President. The event was sponsored by the Rotary Club and the Lyme Disease Task Forces of Brookfield, Newtown and Ridgefield, CT.

Jerry Murphy, a selectman from the Town of Brookfield, welcomes the audience, followed by Russ Cornelius, co-founder of the Brookfield Lyme Disease Task Force, who introduces the event. The introduction summarizes the work of the task force. It is a model for other communities, especially the work with school children. The Task Force also focuses on reducing the deer population. A video clip by Dr. Kirby Stafford succinctly explains the link between deer overpopulation and Lyme disease.

October 24, 2009

Lyme Fighter Eileen Kile – Recognition of a Dedicated CVS Pharmacist

Filed under: Lyme Disease, Lyme Fighters — Tags: , , , , , , , , — joethetick @ 10:26 pm

Eileen Kile, a CVS pharmacist, was recognized by the Ridgefield Lyme Task Force for her dedication and personal commitment to educate and help her customers in the prevention of Lyme disease.

The presentation was made at a Lyme disease seminar on October 6, 2009 in the Candlewood Inn, Brookfield, CT. It was hosted by the Rotary Club and the Lyme Disease Task Forces of Brookfield, Newtown and Ridgefield, CT.

Lyme Disease – A Primer – Dr. Daniel J. Cameron

Filed under: LLMDs - Lyme Literate Doctors, Lyme Disease, Lyme Fighters — Tags: , , , , , — joethetick @ 10:20 pm

Dr. Daniel Cameron, President of ILADS (International Association of Lyme and Associated Diseases), describes the disease carrying tick, explores facts and myths about the infamous rash pattern and discusses testing methods.

The presentation was made at a Lyme disease seminar on October 6, 2009 in the Candlewood Inn, Brookfield, CT. It was hosted by the Rotary Club and the Lyme Disease Task Forces of Brookfield, Newtown and Ridgefield, CT.

Don Bragg, Gold medalist pole vaulter knows all about ups and downs

Filed under: Lyme Celebraties, Lyme Disease, Lyme Disease News, Lyme Fighters — Tags: , , , , , , , , , — joethetick @ 6:09 pm

Don Bragg is best known for reaching athletic heights — he won the gold medal with a world-record pole vault in the 1960 Olympic Games — but he surely deserves at least as much credit for how he’s weathered the low points in his life. He required spinal surgery more than 40 years ago from one-too-many falls in hard landing pits. He contracted Lyme disease several years later, which contributed to premature arthritic conditions.

A heart attack eight years ago precipitated open-heart surgery. A fire at the Clayton home he rented destroyed his family photos and much of his athletic memorabilia in 2003. And along the way, his wife Theresa and son Mark survived bouts with lymphoma cancer.

Don Bragg never complained. He set his jaw and lived by the family motto: “Just suck it up.” But after a stroke felled him on Father’s Day, when he and Theresa were living in Laguna Niguel, Bragg came the closest he had ever come in his 74 years to surrendering to adversity.

The left side of his body was severely affected, and his eyesight was impaired. Facing mounting medical bills and other financial pressures, he considered selling his gold medal. News traveled quickly when it was listed on Craigslist.

“It was a moment of total weakness,” said Theresa Bragg, his wife of 48 years. “The depression just overwhelmed him. He kept thinking: How do I provide? How do I support my family?

That was the only thing he had of value.”

It was then that the Braggs discovered how many friends they have. Complete strangers, learning of an Olympic hero in distress, besieged them with contributions.

The medal is no longer for sale, and it is headed back to the East Bay. After a six-year absence from Clayton, the Braggs plan to relocate there, where three of their children live.

Don Bragg, who is recovering slowly from his stroke, has been a larger-than-life character all his life, even answering to the nickname of Tarzan. As a child, he reveled in Tarzan movies and swung from ropes in neighborhood trees. As a strapping 6-foot-3, 200-pound gold medalist, he once was cast to play the role in a Hollywood movie.

His introduction to the skill that led him to fame came almost by accident. He was roaming the streets of his hometown, Penns Grove, N.J., as a youth when he and a group of buddies discovered discarded bamboo poles behind Weinberg’s Furniture Store.

“In those days, rugs came rolled up on bamboo poles,” Don Bragg explained.

They first used the poles to vault over a nearby creek. Then, on a dare, they tried to vault over a clothesline. When Don Bragg was the only one to clear 5 feet, he realized he possessed a rare talent.

“I was always building Tarzan swings and hanging from ropes,” he said. “I think the strength it took to hold up my weight prepared me for pole vaulting.”

After excelling in high school, he achieved greater heights at Villanova University, winning the NCAA championship in 1955. Then came indoor and outdoor Amateur Athletic Union titles. It was while serving in the Army that he qualified for the Rome Games, where he achieved a lifelong dream by clearing 15′ 5″.

“How many times does an individual set such a high goal for himself and accomplish it?” Bragg said. “It was overwhelming. Afterward, I kept asking myself: ‘Did it really happen? Did I really win it? Or am I dreaming?’”

He punctuated the accomplishment in fitting form. As the stiff-collared Avery Brundage, International Olympic Committee president, hung the gold around Bragg’s neck, the world’s greatest pole-vaulter let out a hair-raising Tarzan yell.

“There were 100,000 people in the stadium who screamed back,” Don Bragg said. “Brundage had quite a look on his face.”

His film role of Tarzan never quite panned out. A legal challenge over copyright issues prevented the picture’s completion. And a checkered career that included stints as small-college athletic director, vitamin distributor and kids camp operator never matched the excitement of his summer in Rome.

But when he’s asked today, he says he has no regrets.

“The gods have been good to me,” he said. “I’m enjoying life.”

He plans to share his good fortune this Christmas season. Using some of those generous donations from strangers, he will put on a Santa suit to distribute gifts to foster children in the East Bay.

Maybe that record-setting pole vault isn’t all he should be remembered for.

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